Day +1479: I’ve got you under my skin…

“I’ve got you deep in the heart of me
So deep in my heart that you’re really a part of me
I’ve got you under my skin…”

12/18/2014: This morning, I awakened to great news. My bone marrow biopsy showed 100% Mary Lou cells and no evidence of MDS! I’ve spent the day basking in relief. Here’s a summary of last week’s medical appointments.

Hematology

My annual bone marrow biopsy and checkup on December 11th with my transplant team went well.

I had only three tubes of blood drawn but lots of testing done on that small amount: CBC (blood counts), CMP (metabolics), TSH (thyroid), ferritin (iron), protein electrophoresis serum, and immunoglobulin panel (igM, igA, igG). Most of the results were within my usual good ranges. However, looking at the immunoglobulin panel today, I noticed that my igM level has steadily risen since transplant and is solidly in normal range, the probable reason I don’t get infections too easily. On the other hand, my igA and igG levels have steadily declined and are both below normal. That could explain why I’ve had the unusual infection in my outer ear, the UTI, and the chronic cough last summer and why it takes me so long to get over infections. I’ll have to remember to ask my hematologist about that when I see him next month.

Anyway, after phlebotomy we headed upstairs and settled in for an expected anxiety-ridden 45 minute wait. Much to my delight, my very favorite bone marrow biopsy technician, Physician’s Assistant Don, showed up within a few minutes and did the procedure early. As usual, it was uncomfortable but soon finished. Don is incredibly fast and efficient and engages in pleasant personal conversation as a good distraction while he works. Michael photo-documented for me:
Bone Marrow Biopsy
Basically, I lie face down on the table. The tech numbs my lower right back with a large syringe of lidocaine and a long needle. Then the tech uses an even bigger needle and syringe to draw marrow aspirate and a small piece of my pelvic bone. The most uncomfortable parts are the two marrow draws. I can feel pain all the way down my leg sometimes and am sore for a couple of days afterwards.

Sadly, Don may be retiring before my biopsy next year. I begged him to wait until after my 5 year checkup in December 2015. He said he’d been doing bone marrow biopsies for 39 years. No wonder he’s so good! I know there are other patients who refuse to let anyone else do the procedure. I wonder what they’ll do when he’s gone.

Next, we went back downstairs and saw Nurse Practitioner Audra, who was also able to see me early. She updated my medication list and examined me thoroughly, listening to my lungs and heart, looking inside my mouth and at my limbs and torso, and poking and prodding my midsection. She joked with me about my washboard abs – the sclerotic cGVHD makes my abdomen very hard and dimpled. She said everything sounded and looked quite good, including my blood work. My potassium is slightly elevated, not terribly but should be monitored.

I then saw Dr. Jones. He also looked me over fairly completely and said I’m doing well. Both he and Audra said my fatigue and mixed pigmentation are probably from cGVHD. He commented on my great tan and recommended continuing the UVA1 treatments for GVHD and seeing him for a followup in six months, June 11th.

We were finished by 11 a.m. and on our way to lunch at our favorite local Indian buffet and home for a nap shortly thereafter.

Dermatology

“It’s a cold and rainy day…”
I saw my dermatologist, Dr. Sweren, on December 16th at Greenspring Station instead of East Baltimore. I like going to that office because I can get almost all the way there on scenic country roads and stop on the way home for freshly churned ice cream at the Prigel Family Dairy. Unfortunately, the phototherapy equipment is available only at the East Baltimore main campus outpatient center.

I arrived early and was lucky to find a nearby parking place in the pouring rain. Astonishingly, I didn’t have to wait at all to see Dr. Sweren either. He’s always entertaining. When I told him what Audra said about my washboard abs, he proudly announced that he used to play the washboard in a band. He’s a few years older than me and we reminisced some about the old days and what a politically interesting time we grew up in. He theorized that today’s youth would be more politically active if the draft were in effect to give them a more vested interest.

Back to the exam, he did a full body check for skin cancer and found nothing suspicious. I have a raised rough spot on my right lower leg that he says is seborrheic keratosis, nothing to worry about. I also have a few lentigines (age spots) on my face from the UVA1 treatments. My vitiligo (unpigmented patches on my face and scalp) probably resulted from GVHD. He said my skin looks good overall. I’m going to try reducing my treatments to once a week. The GVHD continues to progress but we think the UVA1 slows progression.

I asked his opinion about my neck surgery scheduled for January 16th. He knows the surgeon, Dr. Boahene, and was impressed that my otolaryngology surgeon got me a same day consultation with him. I learned that the planned procedure is a chin lift, a common cosmetic procedure, although I’m not having it for cosmetic reasons. Dr. Sweren does not think the surgery will exacerbate my skin problems.

My next routine dermatology checkup will be in six months.

Life in General

In general, life is good. Aside from some fatigue and nuisance level aches and pains, I feel very well most of the time. It’s been a year of emotional ups and downs. Michael was in two auto accidents – he’s fine but his 18 month old car was totaled in the second and had to be replaced. My eldest grandnephew was in middle school when I was diagnosed with MDS in 2010 – I feared I wouldn’t live long enough to see him grow up but tearfully watched his high school graduation this year. Very emotional! We hosted our annual Mother’s Day party in the spring, not realizing it would be my mother’s last. She died on September 5th, 20 days before her 93rd birthday. She lived a good, long life, and her end was peaceful but it’s always difficult to lose a parent. We vacationed in Rochester, MN and celebrated my friend, Laura’s 5th rebirthday. It was exciting to finally meet my “transplant twin” in person. I returned a few months later for another relaxing and enjoyable visit with her and her family. We unexpectedly lost our youngest cat, Tommy, to kidney disease and learned that another of our 12-year-old cats, Moritz, has advanced heart disease. He’s not doing well. Our cats are our children and we love them dearly. Michael and I celebrated our 30th wedding anniversary with a road trip to New York City. We stayed at the Grand Hyatt two nights, walked for miles, ate a lot of good food, and saw a couple of Broadway shows. I love New York.

I celebrated my 4th rebirthday with my family!!! Life is very good.

Happy Holidays, everyone!

Day +1471: It’s been a long time coming…

Superhero“It’s going to be a long time gone
And it appears to be a long
Appears to be a long
Appears to be a long time
It’s a long, long, long, long time…”

12/10/2014: I was going to wait until after my annual checkup and biopsy results to do another post but I realized it has already been nine months since I did a medical update here. My anxiety level is high tonight, anticipating tomorrow’s procedure and the seemingly endless wait for results. And the best result one can hope for is the equivocal “no evidence of disease” (NED); all unequivocal results tend to be bad news.

YES, the annual bone marrow biopsy is a big deal for me. Those close to me (aside from Michael) probably don’t realize this – my medical appointments are so frequent and varied that I may come across as blasé. DEFINITELY NOT THE CASE. Fellow travelers understand this well.

Having said that, I’ll move on to the boring, routine (for a cancer survivor) medical events, mostly for Michael’s and my record.

Dental

I closed the March 10th update with a pending trip to the dentist to have five cavities filled. I was mistaken – there were 8! The good news is that I had all eight done in one sitting on April 8th with neither sedation nor Novocaine/lidocaine. Yes, I’m incredibly impressed with myself! I was able to cancel the following week’s appointment and enjoy a day at home instead. My mouth continues to be extremely dry. I’ve been more diligent with fluoride gel, mouthwash, Biotene, and flossing but am likely to need work with every visit, one of the adjunct benefits of being a bone marrow transplantee. I postponed my next dental appointment until January when my new in-network dental insurance takes effect. I signed up for the wrong plan last year.

Gynecology

I had my annual gyn exam and PAP on April 1st, returning to my local gynecologist. The PAP was clear but I wasn’t happy with the exam in general. The gynecologist admitted he knew nothing about GVHD. The complete lack of coordination with post-transplant specialists is a continuing frustration with Hopkins. Some other facilities such as “The Hutch” in Seattle do a better job with this. I had a mammogram on April 23rd with normal results.

Otolaryngology/Otology/Audiology

On May 20th, an otologist diagnosed my intermittent left ear aches as probable temporomandibular joint syndrome (better known as TMJ). He recommended eating softer foods to reduce chewing for a few days when it flares.

ScopeAlso on May 20th, I saw my otolaryngology surgeon for a routine checkup. She said everything looked great and didn’t even scope me. I asked if anything could be done for the discomfort caused by the numbness and bulkiness in my neck below my chin. She arranged a same day consultation with a plastic surgeon, Dr. Boahene. He explained the procedure: “To remove the bulkiness, suck out fat/fluid through a pencil sized hole, then cut to remove excess skin.” Cuts are usually made behind the ears but he said he would use my existing scars. To help relieve tightness, he might cut muscles at the base of my neck. Recovery for bruising and tenderness would be about a month; total healing, a year. Unfortunately, insurance companies often see no difference between surgery for medical versus cosmetic reasons. They see just a number, a procedure code, but he will try to justify. I’m uncertain about having the procedure so keep putting it off. My transplant doctor suggests surgery could exacerbate GVHD. He said that my prior neck surgery could have caused the flare-up of skin GVHD on my back. He forgets the GVHD preceded my neck dissection by nearly a year. Anyway, I’m currently scheduled for surgery on January 16th but may change my mind again.

I had additional routine follow-ups with my otolaryngology surgeon on August 5th and November 11th. She scoped me both times and said everything looked great. The photo above shows her scoping me with an image of my tongue base on the screen. I’ll see her again February 10th. She said after three years with no evidence of disease we can lengthen the time between visits to six months or even a year.

My hearing test on June 2nd revealed mild hearing loss in the upper ranges. This could be genetic, chemo-related, or normal wear and tear. I return in a year for a recheck unless the hearing loss is interfering with life enough for me to want hearing aids.

Ear Actually more of a dermatology issue, but included here because it involved my outer ear – I had an infection in my right intertragic notch (see diagram) in mid-May. Dr. Patel, a Hopkins dermatologist, examined it during one of my photopheresis sessions and noted that it didn’t look like cancer. The antibiotic ointment she prescribed didn’t help, so she added a 10-day course of oral Keflex starting June 8th.

Side note: In general, since my bone marrow transplant, I don’t get that many more infections than before but when I do, they seem to linger an unusually long time. Fortunately, I’ve had nothing serious.

Dermatology

Because of cGVHD, I see my transplant doctor, Dr, Jones, quarterly instead of yearly. At my March 27th checkup, he told a visiting doctor that chronic GVHD occurs in 40%-50% of transplant patients but at Hopkins, they see less than 10% because of their post transplant Cytoxan protocol. He attributed my GVHD to trauma from “radiation and surgery.” I said I’d never had radiation, to which he responded, “But you did have surgery.” As usual, his memory was selective regarding the onset of my GVHD. I suspect the incidence of GVHD in Hopkins patients may be under reported but I do believe the Cytoxan helps. It’s quite amazing that I’ve had no systemic steroids or immunosuppressants and am faring no worse than my contemporaries from other facilities who’ve had both. I’m grateful to avoid the nasty side effects of those treatments. According to Dr. Jones, there is no cure for cGVHD, and despite many studies, one treatment has not been consistently more effective than another. Therefore, his goal is to minimize size effects while at least slowing the progression of the cGVHD.

While I was there, I again asked what might be causing the high cellularity in my marrow. Surprisingly, he admitted he honestly didn’t know – increased cellularity can be indicative of MDS but my last biopsy showed 100% donor and no chromosome abnormalities. He thinks that the reason might be inflammation from GVHD, particularly since my platelet count is also high. I’m anxious to see how my marrow has changed, if at all, over the past year.

My checkups on June 26th and September 25th were fairly routine. Dr. Jones said my increased fatigue was not surprising with cGVHD and treatments due to the breakdown of cytokines. My vitals and blood work are always good; every visit, he examines my mouth, eyes, and the active spots on my back and notes the absence of hair on my arms and legs and the dimpling of the skin on my limbs and abdomen. Each time, he pronounces, “I think it’s better.” Mostly, I coordinate my phototherapy treatments with my dermatologist, Dr. Sweren, and he bases them upon my feedback about how I’m responding.

By the way, my health insurance accepted the additional documentation provided by Dr. Sweren and ended up fully covering my photopheresis treatments. As I’ve said before, I’m very lucky to have great coverage, helped by being doubly insured through Michael’s military retirement and his current employment.

In mid-March, after two and a half months of extracorporeal photopheresis (ECP) twice a week, I felt a sharp pain deep in my left shoulder blade, an indication of where the next spot of skin GVHD would appear. I can feel the changes underneath before anything is visible on my skin. Sure enough, my left shoulder became dry and striated with “cigarette paper skin” and gradually became hyperpigmented with a pink center area, much like the spot on the middle of my back. It is also sore and itchy. My right shoulder is following the same trend, albeit more slowly. Wearing a bra is exceedingly uncomfortable. Underwires help relieve the pressure UVA1on my shoulders but are more aggravating to my abdomen. Home is never a problem since my main attire has always been loose-fitting loungewear. Unfortunately, I’m uncomfortable going publicly braless – because of my size (and the long-term effect of gravity on my DDDs), outer clothing fits very poorly. My compromise is to skip the bra and wear bulky sweatshirts for therapy or medical appointments and wear one when I go out socially. Winter is good for hiding under my coat when I shop and run other errands. It’s lucky I’m not very social!

After seeing no improvement by mid-April, I asked Dr. Sweren if I could have concurrent UVA1 and ECP therapies. He said that it wasn’t a problem medically but had never been done because insurance companies do not approve. However, his eyes lit up when I reminded him that the UVA1 also helped my seborrheic dermatitis, an entirely different diagnosis code. So, starting on April 28th, I became the first Hopkins patient to have both treatments ongoing. My new routine entailed 10 minutes (30 joules) in the UVA1 booth before beginning my photopheresis each time. I pass the time in UVA1 doing my neck exercises.

I continued ECP for a total of 7-1/2 months, missing only a few sessions due to vacations, illness, or holidays. Some sessions went smoothly but with increasing frequency, the ECP machine halted with annoying alarms due to the flow rate being too slow. The nurse suggested that the problem might be with my high platelet count combined with other unknown blood properties but I suspected a problem with the port. Finally, on August 13th when the flow rate remained zero after many attempts, I decided to take a break from ECP. When the effect of a treatment is gradual and subtle, one way to find if it’s working is to stop and see if the condition worsens. As you know from Michael’s post on August 25th, I had the port removed. The problem turned out to be a loop in the internal line. The surgeon offered to go through my groin and straighten the line or to replace the port with a new one but I wanted to be free of it altogether. I knew I could get a new one if I decided to resume ECP. So far, I haven’t. I don’t think it was helping. Michael is less certain.

Beginning August 20th, I increased my UVA1 exposure to 50 joules per session (15 minutes, 9 seconds) and have remained at this level twice weekly. I’m thinking of trying to cut back to once a week after I see Dr. Jones tomorrow and Dr. Sweren on December 16th.

Hematology

Backtracking a bit, you may recall that my ferritin level remained high after transplant; although gradually dropping, my count was still double the high end of the reference range. My transplant doctor and hematologist were unconcerned but I kept reading about others on marrowforums.org who were being treated for the same issue, either with drugs or phlebotomy. I definitely didn’t want drugs but I had an idea. After photopheresis, a small amount of blood is left in the bottom of the collection container. The nurse pours this into a bag and infuses it via the connected line. I decided to skip having that bit of blood returned each time to reduce my ferritin level. The nurse said she’d had some others do the same.

The slight blood loss each time caused my red counts (RBC, hematocrit, hemoglobin) to drop. When the counts dropped slightly below normal in mid-May, I resumed having my blood returned. They continued to drop, then increase, then drop again, never low enough to warrant a transfusion or to be terribly concerning but worrisome to us nonetheless.

At my routine checkup on June 25th, my local hematologist, Dr. Bahrani, reiterated what Dr. Jones said about the treatments and GVHD causing fatigue. He also said the treatments were most likely the reason for my slightly lower blood counts. When my extreme fatigue continued through the summer and my counts did not recover, I saw Dr. Bahrani again on August 26th. He ran more blood tests and called me with results on September 1st – my ferritin had dropped to 13 (below normal). He recommended getting an iron infusion, which I had on September 16th, and advised getting a gastroenterology checkup and colonoscopy to rule out internal bleeding.

I saw my gastroenterologist on October 16th. Since I wasn’t due for a colonoscopy for several more years, he opted for a blood test to rule out celiac disease and a stool sample to check for occult blood. Fortunately, both tests came back negative. I had my blood work rechecked with Dr. Bahrani on October 27th, and all primary counts were back within normal ranges. I’m still tired and lacking stamina but not nearly as much as before. I no longer need daily naps.

Ophthalmology

My eyes continue to be my greatest source of frustration post transplant. The Thermalon mask that I mentioned in a prior post does help. I resumed using Restasis nightly as of May 13th. It seems less irritating if I use the drops right before the bedtime hot compress (mask). Beginning on November 18th, I started using Restasis before my morning compress, as well. Oddly, it’s intolerably irritating if I put drops in both eyes but not so bad if I do only one eye. The pain/irritation is worse when I focus at a distance – perhaps the untreated eye compensates for the other and reduces the strain. Whatever the reason, I try to do anything that helps. When I’m having an especially bad eye day, I use the mask more frequently. I clean my eyelids and lashes with Ocusoft before and after each compress application. I also use preservative free over-the-counter eye drops many times a day.

Back in mid-March, I contacted my ophthalmologist, Dr. Prescott, via patient portal to let her know the medroxyprogesterone drops were not helping and to ask about tacrolimus (an immunosuppressant) eye drops. The vet prescribed these drops for my cat when he had severe eye ulcers but I couldn’t find much information about human use. She replied:

“I do not recommend tacrolimus for dry eye, though I have used it with some success on one patient with very severe atopic disease. Since it is off label, and still so new, I am concerned with possible side effects and long term effects.

“…I think it is worth having an evaluation with Dr. Hessen [a Wilmer optometrist], who is wonderful! I have seen great results with the PROSE lenses, so it is definitely worth exploring. They are about $5,000/lens, but insurance may cover them. I will send Dr. Hessen a note and put in a referral request…”

I procrastinated and finally scheduled an appointment with Dr. Hessen for June 27th. Unfortunately, I didn’t realize she was pregnant – her office called me to cancel on June 21st because she had her baby sooner than anticipated. I could’ve scheduled with another doctor but wanted to await her return because she came so highly recommended from multiple sources. Her specialties are dry eye, autoimmune diseases, and scleral lenses.

I was shopping for new frames at the local optometrist’s office on May 14th, and they offered to do a vision test. Dr. Butterworth took a photograph of the back of my eyes and discovered a hemorrhage in the left eye. He said it could be from many different causes – strain, coughing, etc. He forwarded the results to Wilmer but I forgot to ask about it when I saw Dr. Prescott.

I saw Dr. Prescott again on August 1st. She noted that in addition to dry eye, I have anterior and posterior blepharitis (inflammation). Anterior blepharitis affects the outside front of the eyelid where eyelashes are attached. Posterior blepharitis is caused by dysfunction of meibomian glands within the eyelids that secrete oils to help lubricate the eye. The crusty eye yuck is from blepharitis. She advised me to continue using Lotemax steroid drops, gel, and ointment twice daily as well as the OTC eye drops, Restasis, and mask.

At my next follow-up on October 27th, Dr. Prescott measured my vision at 20/40 with glasses. That was with great effort and much squinting on my part to read the eye chart. She mentioned that Dr. Hessen was back at work and again suggested I consult her about scleral lenses. I called Dr. Hessen’s office the next day and was lucky to get an initial consultation on October 29th due to a cancellation.

Dr. Hessen is personable and excellent at explaining things. She took as long as I needed to answer my questions and Schirmer Testreiterated I could contact her via patient portal if I thought of more. My eye pressure was tested and found to be slightly high, 22 in both eyes, probably because of the steroid drops. Normal pressure is 10-21 mmHg. I had a Schirmer test on both eyes to measure tear production. As you can see in the diagram on the right, normal range is 15-25mm. My result was 1mm. That is very bad but the tech said any result above zero is hopeful because it means that tears can be produced. It may be possible to increase production or at least keep the tears being produced in the eye longer.

Dr. Hessen discussed three possibilities for treatment:

  1. PROSE lenses (prosthetic replacement of the ocular surface ecosystem) – large hard lens with a significant learning curve for insertion. They must be inserted and removed daily. $5600 each – insurance may cover. A side benefit of the lenses is correction of near or distance vision (but not both).
  2. IPL (intense pulse light for dry eye) – 5 treatments (once a month for five months), about $500 each, may require additional maintenance treatments. Insurance won’t cover.
  3. Lipiflow – one treatment, about $2000, may need to be repeated. Insurance won’t cover.

I need to do more research on these and write a separate post for those interested. I’m scheduled for a PROSE lens fitting on December 29th. Dr. Hessen says she has had a 100% success (i.e., significant improvement) rate for patients who are able to get past the learning curve and tolerate wearing the lenses. I have concerns about my patience level, having tried “normal” contact lenses when I was young and not liking them. However, this time I have more incentive – better vision rather than vanity.

In the meantime, Dr. Hessen wants me to wean myself off of Lotemax (which I’ve done) because high eye pressure puts me at risk for glaucoma. She said to use HOT compresses at least twice a day, as hot as possible short of burning my lids. I’ve increased the time I heat the Thermalon mask from 20 to 35 seconds in the microwave and am getting more of the gunk out, presumably helping unclog the glands. I also wear the hot mask for 10-15 minutes at a time instead of 5 minutes. She also said to continue using preservative free OTC drops and Genteal ointment and to take an oral supplement of 2000-3000mg daily of Omega-3, either fish oil or flaxseed oil. I’m taking fish oil capsules, two 1500mg capsules every night.

Miscellaneous

Beginning July 18th and lasting 7 weeks, I had a tickle in my throat and chronic cough, accompanied by hoarseness (no other symptoms of illness, aside from fatigue). I suppose it may have been allergy. I treated it with Benadryl and Sudafed.

On September 21st, I was treated at Patient First for a urinary tract infection, my first in many, many years. I used to be able to get rid of UTIs by drinking lots of cranberry juice but this time, I also needed a week of Cipro antibiotic.

I’ve had more frequent bouts of nausea in the past six months. I don’t know why. It comes on very suddenly but usually abates if I eat something or take a 0.5mg Ativan. The low dose of Ativan also helps on the rare occasions I have trouble sleeping.

That’s about it for now. I hope to have another update soon with results from my annual bone marrow biopsy.

Day +1461: And we don’t care that tomorrow comes with no guarantee…

Karen & Mary Lou“And come what may,
You and me, we’ll stay together
Year after year,
Won’t we my dear?
We’ll always be you and me.
We’ll always be you …and…
Me!”

11/30/14: “My name is [Karen] and I am four fingers old; mostly I just try to do the things that I am told….”
Four years ago, Mary Lou gave me the precious gift of her bone marrow. This perfect stranger was my perfect match, and now is literally a part of me for life. I got to meet and thank her in person a year and a half post transplant, an incredible experience.

This past year, I finally had the pleasure of meeting another of my personal heroes face to face, Laura Evans. We met online through marrowforums.org about 4-1/2 years ago and it was sort of “love at first write” – I’ve mentioned her here before. Laura celebrated her five year rebirthday in June and met her donor, Carin, for the first time in late August. In honor of Laura’s and my friendship and in the spirit of the season of giving, I’m posting her donor’s story here today. Please consider giving someone else the gift of life! There’s more information on how to join the registry at Be the Match.

Somewhere out there…

“And even though I know how very far apart we are
It helps to think we might be wishing on the same bright star
And when the night wind starts to sing a lonesome lullaby
It helps to think we’re sleeping underneath the same big sky
Somewhere out there
If love can see us through, then we’ll be together
Somewhere out there, out where dreams come true.”

Carin & Laura

I wanted to share with you the story how I became the lucky one to be able to donate my bone marrow to Laura.

Life is full of circumstances. You just never know what your own actions, what you say and what you do can make a difference in somebody’s life. Just like when you give a smile to that stranger you meet on the street, or when you do a random act of kindness. You just never know what will come out at the other end, how your actions can literally change another person’s life. Like in the movie “Pay it forward”.

Here is my story consisting of such circumstances. Back in the mid 90’s, I worked at the University of St. Louis Hospital in St. Louis, MO. One day, I was early for work and near the elevators I saw an event held by the Bone Marrow Registry. As I had some time left before work, I stopped by. I decided to sign up, gave some blood and then jumped in the elevator to my shift at the pharmacy. Then I heard nothing for years and years. Sometimes I thought whatever happened to my blood sample. Did it get lost? Or was my blood not a match for anyone?

Through the years I changed jobs a few times, started a family, moved twice, the second time even across the world to my home country of Sweden. About 13 years later in spring of 2009, my blood was finally a possible match! For official purposes such as taxes, I had left an address in USA of my mother-in-law. The Bone Marrow Registry in US contacted her, and as she stated that I had moved to Sweden, the Swedish Bone Marrow Registry took over the search to find me. The registry here is called Tobias Registret after a young man called Tobias, who unfortunately died after never finding a bone marrow donor. Tobias Registret looked me up in the phone registry and called my cell phone. I was visiting my parents when I got the call that I was one of about 10-20 best matches.

A few days after I got back home, I left a blood sample at the local health clinic to see if my blood after 13 years was still a good enough match. It was a very good match and more tests were done to find out how good. When I got the news from Tobias Registret that I was the best match, I went to one of the best hospitals in the country 300 miles away for a thorough check up as well as meetings with coordinators and doctors to see if I was both physically and mentally up for the donation. It was also decided that my marrow would be harvested using the method of drawing up the marrow in syringes in my hip bone near the lower back.

A few weeks later, I was back on the train going about 300 miles to the same hospital for the actual donation. It would be an overnight stay, and it was decided that my mother would join me as my husband had just started a new job a week earlier and couldn’t get time off. This was the same town as there my mother had received her nursing degree many years earlier, so in the evening she wanted to show me the university, the area where she stayed, as well as the cathedral where her graduation took place. We also went to a classical concert at the cathedral before it was time to head back to our room at the hospital.

The next morning, everything went great at the procedure. The marrow was rushed to the airport and then flown using a courier some 10 hours to USA. I was told it would be transplanted that same day into my recipient. I was later told by my coordinator at the Bone Marrow Registry that all had gone well, but it was too early to know anything. All I was knew about her was that she was in her 20’s-30’s, living in the Midwest and desperately needing a bone marrow. Five years later, I get to know her name, and we are now literally blood sisters.

Long story short: You will just never know how your life will change another person’s life, how small circumstances can literally save someone’s life. What if I had been off work that day back in the mid 90’s? What if I had been late for work and not have had time to give that blood sample? Mind boggling to say the least…

~Carin Harrison, July 2014

I’m way past due for a major medical update here – I’ll try to post soon after I get the results from my annual exam and bone marrow biopsy on December 11th. In the meantime, please assume I’m being basically boring.

Taglines

  • Day +1148: Looking Out My Back Door, Creedence Clearwater Revival (IDed by Leslie)
  • …Faith, George Michael (IDed by Guy and Cathy)
  • Day +1196: Wheel in the Sky, Journey (IDed by Leslie, also a valiant attempt by David)
  • …Does Anybody Really Know What Time it Is, Chicago (IDed by Cathy)
  • Day +1230: I’m Gonna Be (500 miles) (IDed by Heather, David, and Leslie)
  • Day +1364: Skating Away, Jethro Tull (IDed by Debbie and Chris)
  • Day +1364: Skating away…

    “Skating away…
    Skating away on the thin ice of new day…”

    Greetings all – it has been quite a while since Karen or I posted which is a sign things are going ok! Currently, Karen is in the OR getting her port removed and hence I am falling into my Johns Hopkins waiting mode. Unfortunately, the port removal is not a sign that her GvHD is disappearing, merely an administrative procedure to remove the port and suspend treatments for a while.

    All in all life is good, and yes the tag line is odd for August, but the thin ice line seemed appropriate for a cancer survivor saga.

    10:55 Procedure complete, all is well.

    Michael

    Day +1230: But I would walk 500 miles…

    “…And I would walk 500 more
    Just to be the [wo]man who walked a thousand miles
    To fall down at your door
    Da da lat da (Da da lat da)
    Da da lat da (Da da lat da)”

    Be the Match

    4/13/2014: Roll back the calendar four years. I had been diagnosed with AML/MDS in early January and had completed 3 cycles of Vidaza (azacitadine). Miraculously, my blood counts were rising toward normal and my blast percentage falling. Both my oncologist and hematologist were urging me to get a bone marrow transplant but the prospect seemed dismal, especially with the high risk of death or other serious complications. Why make myself ill when I felt healthy?

    LauraI’m not inclined to ask for advice, preferring to research and decide for myself. No one’s ever accused me of being indecisive! Yet, there I was with my emotions all over the place and not knowing which way to turn. I’m also generally a loner, by choice, but discovered a wonderful online community at Marrowforums.org. Laura (pictured right with Simon), then nearing her first rebirthday, immediately grabbed my attention. Her journey had taken many difficult twists and turns but she’d not only persevered – she’d offered practical advice, assistance, and hope to others like me who had barely taken their first steps.

    Laura’s fifth rebirthday is fast approaching on June 18th. In typical fashion, Laura is kicking off her grand celebration with her husband, Ryan, by participating in the Be The Match® Walk/Run in Minneapolis on May 17 to raise critical funds to help match volunteer marrow donors with patients who have blood disorders like aplastic anemia, MDS, leukemia, or lymphoma. PLEASE DONATE to help Laura reach her goal of raising $500 for this worthy organization that saved both of our lives and continues to save the lives of countless others around the world.

    http://www.bethematchfoundation.org/goto/evanslj08

    Laura and I have a lot in common besides being transplantees, and we connected on a very personal level. I jokingly claim we’re transplant twins, separated at rebirth. Michael and I are incredibly excited about our upcoming trip to Rochester, MN in June to help Laura celebrate her 5th rebirthday with Simon and her other family and friends.

    Day +1196: Wheel in the sky keep on turning…

    “I don’t know where I’ll be tomorrow…”

    Sunset

    3/10/2014: Greetings! It’s been awhile since I posted, so you should assume all is well. Either Michael or I will let you know if something goes awry.

    After a cold, snowy winter across the United States, I know most of you are eager for spring. Crazy person that I am, I never tire of the chilled whiteness. However, I’m sympathetic to those less fortunate who must move the stuff around for commuting.

    Daylight savings time this weekend is a sure sign that spring is near. “Does anybody really know what time it is…does anybody really care about time?”  Personally, I’d like to abolish daylight savings – why must we muck with the time anyway! Time cannot be saved, only spent.

    Following are updates from my medical appointments over the past couple of months – nothing terribly exciting (boring is good).

    Ophthalmology

    Thermalon MaskMy eye doctor previously suggested warm, moist compresses but because I disliked messing with the wet cloths, I didn’t do them often. I discovered a better solution on Amazon – a microwavable moist Thermalon mask. I microwave the mask 20 seconds and apply it for 5 minutes upon awakening in the morning and again before sleeping at night. OcuSoft

    I also use Ocusoft Pads to clean my lids and lashes after the warm mask. I like the no-rinse moisturizing pads but if you find these too costly, diluted baby shampoo will suffice.

    The mask and cleansing pads are soothing but my eyes are still quite dry and ultrasensitive to light, and my vision blurry. I saw Dr. Prescott on February 7th. She advised me to continue using Lotemax steroid ointment at night and prescribed medroxyprogesterone 1% (hormone) drops 4x daily. These drops are compounded at the Johns Hopkins pharmacy that mixed up my prior prescription. I checked this one very carefully when I picked it up on February 12th. The drops are completely non-irritating but don’t seem to be doing much. This week, I’m to let her know via the patient portal how I’m doing. She’ll let me know when she wants to examine me again.

    The ECP (photopheresis) therapy doesn’t seem to be helping yet either. It may be too soon to tell on that. I’m fairly frustrated with not being able to see clearly much of the time. I can see well enough to function but it’s a constant strain. I’m about ready to try Restasis again, but only at night this time.

    Hematology

    I saw my favorite hematologist, Dr. Bahrani, on February 5th. His office moved to the newly built cancer center at our local hospital, Upper Chesapeake (owned by University of Maryland). Despite being busier than ever and looking a bit stressed, he never makes me feel rushed. This time was no exception. Michael accompanied me this visit. Dr. B discussed the results of my January 30th high-resolution CT scan while we viewed them on his computer screen together. He took the time to explain how he determined everything looked great.

    Michael and I discussed our concerns about my last bone marrow biopsy, compared to the prior two, and the fact my white count has been slightly elevated the past six months. Dr. B immediately examined my blood sample under the microscope. He saw no abnormal cells but did see signs of inflammation of unknown origin. He said it might be due to my cutaneous graft versus host disease (GVHD) but to be cautious sent an additional sample to the lab for flow cytometry analysis to rule out blood malignancies. I received the results about a week later, thankfully all clear!

    “In the sample analyzed, there is no evidence of B or T-cell proliferative disorders or increased blasts.

    “Viability 7AAD: 99%
    There is a mixed population of myeloid cells, B cells and T cells. No abnormal myeloid antigen expression is seen. There is no increase in CD34+ blasts (<0.1% of total). The B-cells (16% of total) appear polytypic and the T-cells (15% of total) show no pan T-cell antigen deletion. The CD4:CD8 ratio is within normal limits (1:1)."

    We still don’t have an explanation for the increased cellularity of my marrow, and I will ask my transplant doctor about it again when I see him on March 27th. We may never know but that’s okay as long as it’s doing me no harm.

    My blood work continues to look good overall:

    February 5
    WBC 11.4 (ref 3.0-11.2)
    Granulocytes (~ANC): 4.7 (ref 1.4-9.0)
    Platelets: 476 (ref 130-382)
    RBC: 4.23 (ref 3.90-4.90)
    HGB (hemoglobin): 14.0 (ref 11.5-14.3)
    HCT (hematocrit): 41.5 (ref 34.2-42.2)
    Bilirubin: 0.5 (ref 0.0-1.2)
    Alkaline phosphatase, S: 79 (ref 25-150)
    AST: 22 (ref 0-40)
    ALT: 13 (ref 0-40)
    Potassium, serum: 4.2 (ref 3.5-5.1)

    I get weekly CBCs and CMPs with my photopheresis treatments at Hopkins. As always, my metabolics (CMPs) are perfect, and my CBCs are consistently good. A couple of weeks ago, I had a scare when all my counts dropped dramatically in a single week but it turned out to be a lab error. When I was retested the next day, everything was fine.

    Dr. B listened to my heart and lungs and examined the swollen nodes on the back of my neck. He said the enlarged nodes are due to skin or scalp inflammation, both of which I have.

    He renewed my prescriptions for Prevacid, Acyclovir, and Ativan. I still take 0.5 mg. Ativan occasionally for nausea. It works well but makes me sleepy, not a bad side effect if I take it at night. I continue to take Prevacid for acid reflux and Acyclovir as a prophylactic antiviral daily. Every time I stop, I get a herpes flare-up so I’m trying a reduced dosage, 400 mg. instead of 800 mg. He also wrote me a prescription for a Dexascan (bone density) which I scheduled for March 18th.

    My next checkup with Dr. Bahrani will be on June 4th.

    Otolaryngology

    My regular 3-month checkup with Dr. Gourin was on February 18th. She did the usual through-the-nose scope to look at the base of my tongue and poked and prodded my oral tongue and mouth – everything looked good. She said there’s no need for MRI or X-rays. I told her about my woes with attempted scheduling of Johns Hopkins oral surgeons. She offered to recommend someone outside of Hopkins but I told her I’m happy with the surgeon I found through my insurance. She looked at my exostoses and said there’s no indication of malignancy, and a biopsy is not needed. The bony ridge gets sore periodically so I eventually may have Dr. Yalamanchili (oral surgeon) smooth it out for me.

    I get intermittent mild earaches in my left ear. Because the MRI I had last spring showed no abnormality, and the earache is not continual, Dr. Gourin believes it is a eustachian canal defect. I’m scheduled to see an otologist the same day as my next followup appointment on May 20th. Sudafed helps but keeps me awake so I don’t like to take it. Insomnia is worse than a little ear pain!

    My neck scars feel tight. I think I need to do my stretching exercises more often.

    Dermatology

    My twice weekly photopheresis treatments continue. So far, there’s no improvement in either my skin or eyes. My skin is worse than before. My back itches, and the areas up near my shoulders are spreading. I keep reminding myself I’m only in my third month of treatment and was warned it might take six months to be effective. I haven’t given up yet. I’m having some trouble with my primary insurance. Hopkins called them before I started the treatments and they said it was covered under my plan. Now, the insurance company is rejecting part of the claims, saying the treatment is “unproven.” The treatments are extremely expensive and the therapy is NOT experimental or unproven, so I will persist in fighting this one. If my primary rejects the claim, the secondary will follow suit.

    Dental

    I saved the worst for last – today’s (March 10th) dental appointment. I have 5 cavities along my gumline that need to be filled. My transplant nurse practitioner warned me that this might happen because of my dry mouth. The dentist is prescribing fluoride gel to use twice daily to try to prevent further decay. I admit I’ve been negligent about using the recommended fluoride rinse, and now I’m paying the price. I already use Biotene mouth rinse. My teeth are also increasingly discolored. I don’t know if that’s caused by the eroding enamel or if anything can be done about it. I don’t want to risk damaging my enamel further.

    Taglines

    There was a second song buried in the Day +1148 post (last paragraph under Hematology) that no one identified. I’ll give you some more time.

    That’s all for now. Don’t be alarmed if we don’t post for a few months! No news is good news.

    Day +1148: Doo, doo, doo, lookin’ out my back door…

    Looking Out My Back Door

    1/21/2014: It’s been a gorgeous snowy day here, beginning around 8:30 a.m. and still snowing now at 11:00 p.m. I love watching. Overnight snowfalls are fine but they have a prerecorded feel about them – I prefer the live action. A day of putzing on the computers and taking pictures of birds and squirrels out my back door is hard to beat!

    My latest project has been creating a chronological iTunes playlist of all of our tag lines, a musical journey of sorts. In the midst of my work today, I found a page of notes that never got posted, miscellany, more for myself than for others but included here for completeness.

    Ophthalmology

    I telephoned the Hopkins Arcade Pharmacy on December 16 and spoke with a pharmacist, Tammy, about my prescription error. She asked lots of questions, the first of which was, “Are you okay?” I explained (see Day +1103) all that had transpired. She was very apologetic. I described the bottles and labels in detail and my reaction to the actual cyclosporine drops when I got the refill. The compounds are made in batches and stored in the refrigerator. The cyclosporine drops are next to the vfend drops, and someone apparently grabbed the wrong bottle when I picked up my Rx. The good news – it’s unlikely that someone else ended up with mine, compounding the mistake. She explained that all the information goes into an error database and asked if I’d bring both prescriptions in on my next visit to Hopkins. She apologized and thanked me for being patient and understanding. I spoke with her face to face on January 15 when I dropped off both sets of drops and containers. She was very pleasant and professional and again expressed relief that I was okay. Lesson learned: Always verify your prescriptions when you pick them up. If you have any doubts, ask in person – don’t rely on telephone or email. Mistakes do happen.

    My eyes have been dry and my vision very blurry. I’m tempted to try using Restasis again, just at night, but I’d like to wait and see what the ECP treatments do, if anything. I use GenTeal gel and Tears Naturale Forte during the day and Lotemax steroid ointment at night. Every morning, I scrub my eyelids and eye lashes with Occusoft pads.

    Podiatry

    Toenail SurgeryI had a “medical” pedicure on December 17. I think I’ll go back to the cosmetic ones that are more comprehensive for less money. Occasionally, I get ingrown toenails and had the edges of my left big toenail surgically removed after my pedicure. Surprisingly, the lidocaine injection in my toe (“you’ll feel a little pinch”) was way more painful than any of my bone marrow biopsies. As my toe was numbing, I experienced crampy pain running up the front of my leg all the way to my knee and asked the doc about it. “Huh, never heard of anything like that. It shouldn’t be from the lidocaine.” My theory is that he hit a nerve. He completed the minor surgery and sent me home with a bright red Coban™ wrapping covering most of my foot and ankle to keep the dressing on my toe. Before I went to bed 9 hours later, my toe was still completely numb, no feeling whatsoever. I was a bit worried but next morning the toe was sore and throbbing, as expected. It took several weeks to heal instead of the usual 10 days or so. Now that it’s healed, I’m happy, but I had serious doubts in the interim. I probably won’t get the rest done anytime soon. At least the enormous red bandage matched my boots and electronic gadgets. ;-) Dr. R said the red was purely accidental – he grabbed the closest available roll from the shelf. After the first day, all I needed was a band-aid anyway.

    Dental

    Less than a week after my Dec 14 oral surgery consultation, I felt something in my mouth while talking on the phone. It turned out to be a teeny tiny chip of bone which I saved to show the surgeon when I went for my biopsy. I returned to the oral surgeon on December 28, apprehensive about potential nerve damage during the biopsy that could permanently numb part of my tongue. However, after Dr. Y examined my mouth, she was so pleased at how much better it looked that instead of doing surgery, she decided to wait another two weeks and reassess. It’s possible that the bone sliver was causing the irritation. Because of my ongoing photopheresis treatments, she also wanted to speak with my oncologist before doing any surgery. So instead of getting cut, I had brunch – hurray! Dr. Y telephoned me January 7 to ask how I was doing. By then, the soreness was almost completely gone. She examined me again on January 18. I had healed so well that she deemed the biopsy unnecessary. She offered to make a small incision and smooth out the bony protrusion (exostosis) but I declined because it is isn’t bothering me at all now. I can always return if it becomes troublesome again.

    Hematology

    On December 20, I received an email notification that my full bone marrow biopsy report was available via the patient portal. I eagerly logged in to read and wished I hadn’t.

    “1. BONE MARROW (BIOPSY AND ASPIRATE): HYPERCELLULAR MARROW WITH TRILINEAGE HEMATOPOIESIS AND ATYPICAL LYMPHOID AGGREGATES, NO EVIDENCE OF ACUTE LEUKEMIA. SEE NOTE.
    NOTE: Several atypical lymphoid aggregates are present suggesting the possibility of a low grade B cell lymphoma.

    “MICROSCOPIC DESCRIPTION: The marrow is hypercellular (80-90%) and there is trilineage hematopoiesis. The myeloid:erythroid ratio is increased (5:1). There is left-shifted myelopoiesis, and the erythroid lineages shows a full range of maturation Megakaryocytes are increased in number and focally abnormal in morphology with small, hypolobated and hyperchromatic forms with focal clustering. The accompanying aspirate shows progressive maturation of both the myeloid and erythroid lineages. There is no dysplasia or increase in blasts. Flow cytometry, reported in detail separately, shows no increase in blasts.”

    Trying to remain calm, I emailed a copy to my most trusted doctor, my hematologist, and asked if I should be worried. I also emailed my transplant doctor. Still, my mind was racing – enlarged abdominal lymph nodes could explain my raised right hemidiaphragm as well as my white counts being in the high normal range and my lymphocyte percentage being very slightly above normal. I’ve also been tired and easily winded. I started searching the internet for B cell lymphoma and learned on MedScape: “Non-Hodgkin lymphoma (NHL) is a collective term for a heterogeneous group of lymphoproliferative malignancies with differing patterns of behavior and responses to treatment. Most (ie, 80-90%) NHLs are of B-cell origin.” I realized it was pointless to research more until I understood the specifics of my pathology better. I resisted more surfing until I heard from Dr. Bahrani and/or Dr. Jones.

    Thankfully, Dr. Bahrani replied very soon – “Looks good!” I emailed him again, asking specifically about the lymphoma comment. Again, a speedy response:

    “I noticed that, nothing to be concerned about at this time; we will just monitor your counts and do lymph node examination periodically. No need for any treatment for this.”

    Because he’s always been completely straightforward with me, even when the news was bad, I trust what he says. The same answer from someone else would not have carried as much weight with me.

    Dr. Jones responded December 26, apologizing for the delay. He ordinarily replies immediately but my message had ended up in his spam folder. He wrote:

    “Lymphoid aggregates – benign – are very common in bone marrows of older patients. I have no idea why pathologist is suggesting low-grade lymphoma. You had them last year and they were read flat out as ‘benign.’ We never run down lymphoid nodules in marrow without some other reason to do it. And, you had a PET scan last year which didn’t show any abdominal nodes. Low grade lymphoma doesn’t grow that fast, and we don’t treat asymptomatic patients with the disease since it often doesn’t cause any problems or change survival in any way (hence, the name ‘low-grade.’)

    “If you read down in report, the B cell clonality studies were not done because the marrow was being done to evaluate MDS, not lymphoma. Again, I can’t say with 100% certainty that this isn’t lymphoma, but I can say with 90% it isn’t and with 100% even if it was, we wouldn’t do anything differently. We can add B cell studies to marrow next year.”

    After Michael and I talked about the replies, we were still apprehensive. I emailed Dr. Bahrani again and asked if I could get a chest/abdominal CT for additional peace of mind. He readily acquiesced. I was scheduled today but postponed until January 30 because of the snow. I’ll get the results at my regular exam on February 5.

    Like most cancer survivors and their caregivers, Michael and I will always be a little paranoid; however, we do trust my doctors “‘Cause I gotta have faith….” They’ve gotten me this far without serious problems against some frightening odds.

    Otolaryngology

    I’ve had an earache in my left ear off and on for the past couple of months. I attributed it to the respiratory infection and/or dental problems but it’s still there sometimes even with those resolved. It doesn’t feel like it did when I had the base of tongue cancer. I took Sudafed for a week which helped but also caused extreme dryness and insomnia, so I stopped. I also have a swollen node on the right back side of my neck. I suspect I have fluid and a low-grade infection in my ear and will get it checked by Dr. B on February 5 as well as by my surgeon at my next appointment on February 18.

    My lymphedema has been worse lately, probably my fault for not wearing my mask as much as I should. The mask is quite uncomfortable.

    Photopheresis

    I’ve completed five ECP treatments. My back is itchy but less sore, and my eyes may be a little better. It’s probably way too soon to tell. My port remained very sore for several weeks after implantation and is still tender. There’ve been problems with repeated occlusions and slow flow rates during my ECP sessions. Last week, the machine errored and I had to move to a different machine and start over. The apheresis nurse said they’re going to try a stronger heparin mix on the flushes. My platelets are high (around 500k) but I’m inclined to suspect the problem is with my port. If the same thing happens next time, I’m going to ask them to do a one-time treatment using an IV directly in my vein to rule out the port as the source of trouble.

    On a side note, the guy in the chair next to me had his transplant at “The Hutch” in Seattle and participated in the radioisotope clonal antibody trial that I considered. I was excited talking to him about his experiences there. Very interesting stuff. He also confirmed my belief that they’re much more coordinated than Hopkins with other medical specialists (dentists, cardiologists, dermatologists, etc.) who are experienced with treating transplantees.

    Taglines

  • Day +1111: If I Didn’t Have You, Thompson Square (IDed by Leslie and Cathy)
  • Day +1117: If You’re Going Through Hell, Rodney Adkins (IDed by Cathy)
  • Day +1123: Bleeding Out, Imagine Dragons (IDed by Cathy)
  • Day +1127: The Raven, Edgar Allan Poe, covered by Alan Parsons Project (IDed by Cathy)
  • Welcome to My Nightmare, Alice Cooper (IDed by Cathy)
  • True Love, P!nk (IDed by Cathy as My Life Would Suck Without You, Kelly Clarkson – also correct although not what we had in mind)
  • Breathe, Pink Floyd (IDed by Cathy)
  • Day +1131: Reflections, The Supremes (IDed by Cathy as The Way Life Used to Be, Snoop Dog – also correct although not what we had in mind)
  • Cathy is a superstar and our hero for taking the time to look up and identify every tagline! Kudos to Leslie, too, for identifying the Thompson Square song. Thank you both.

    Postscript

    January has been a month of celebrations – my sister’s birthday, our grandnephew’s Eagle Scout Court of Honor, our newest niece’s christening, and plane tickets purchased to attend a fellow transplantee’s five-year rebirthday party in June. And, of course, lots of snow!

    Day +1131: Reflections of the way life used to be…

    Winter Welcome1/4/2014: Happy New Year – wishing everyone a happy and healthy 2014!

    Today we feature a guest post from gifted fellow traveler, Kathy, whose eloquent words paint vivid images in the mind.


    Reflections – Not Resolutions

    KathyAs the year 2013 is coming to a close, I have been reflecting on what an incredible year it has been. I stopped making New Years resolutions a while ago, because I really never kept the ones I made, and somehow the importance of doing that seems so trivial now. I can completely understand wanting to start the new year with sort of a clean slate, and to hopefully have a more productive, full, enriching, happy year ahead. As for me, I look at 2014 the same way I did last year when 2013 was just around the corner — a most amazing gift.

    It has now been 605 days – 20 months- since my bone marrow transplant. If you think it is quirky to count each day and keep track of them, all bone marrow transplant survivors and their medical teams do exactly that. So we have those numbers constantly in our heads, keeping track of each new milestone. This year (2013) has been the best year I have had for a long time. I’m still recovering, but I am definitely as close to feeling 100 percent as I can be. My energy level is high and it feels so good to be busy and do the things that I love. This year has been a true blessing.

    Without getting too melodramatic about it, when I spent two months in Hopkins in isolation, I had a lot of time to think. When anyone comes face to face with a catastrophic medical illness, the reality of the situation kicks you in the gut pretty fast. When I was not in my drug-induced and chemo-induced red haze, I put a lot of images in my brain to get through it. I prayed every day, of course, but I did other things as well. I took trips, I painted pictures, I had imaginary conversations, I listened to music, I played a movie loop of my life so far — you get the idea. This was done laying flat on my back hooked up to the largest IV pole I had ever seen. I use the term “red haze” because strangely, when I closed my eyes (and my eyes were closed a lot) it appeared so red. Was it all the brand new marrow trying to take up residence in my body? I don’t know. I only experienced that for about three months.

    During this time I also made up my mind to revel in each and every day that comes my way. It’s amazing how much in this world is clutter that depletes our bodies and souls of much-needed love, energy, and appreciation of life. The 24-hour news cycle that constantly bombards us with “important” happenings every day, and then relentlessly replays those happenings until we beg for relief. And all the nastiness that erupts from so many venues about almost everything is so disheartening. I have come to believe that of course there are very important issues in this world that need to be discussed and resolved, but those issues will eventually resolve themselves if good and loving people take the lead. And if those nasty, screaming people would just get out of the way.

    The crazy things you think of when you are so vulnerable after being told the diagnosis. My doctor was and is amazing. Here is a man who has the reputation of being one of the best, if not THE best, oncologist/hematologist/scientist in the world when it comes to rare blood diseases at Hopkins. As I listened to him and watched him, I was impressed. He had compassion and very kind eyes with a lot of laugh lines, so I knew he must smile a lot. And he is a hugger. My husband and I have received numerous hugs from him. When he looked me straight in the eye and said, “we WILL get you through this”, I completely believed him and trusted him. And I never once thought about what his opinion was of The Affordable Care Act, gun control, immigration reform, what his religion was or if he even had a religion, what political party he liked, etc. All the hot button issues of our world faded away. All the clutter disappeared. It was just me and my husband and my daughter in that room preparing for battle, alongside my doctor and his arsenal of weapons. The biggest weapon of all was always the prayers from so many people, but the doctor’s expertise and tools at his disposal were very much needed also.

    I don’t sweat the small stuff or the big stuff anymore. I feel very much at peace. My family would say that I still get “hyper” about some things, but that is just my personality. I am truly peaceful. I am in contact with two other women, both BMT survivors, pretty regularly. One just passed the two year mark and the other passed the three year mark. It’s good to be on this journey with others who have come before you. They have given me so much support and good information. I am trying in some small way to “pass it forward” to help other people in any way that I can. Amazingly, opportunities have arisen this past year to do just that. People have contacted me about their own challenges with BMT or challenges their loved ones are facing after being diagnosed with leukemia.

    So, no New Years resolutions for me. Just reflections on the wonderful life I have, my loving family and extended family, all my friends in art class and elsewhere, and what I would like to experience in 2014. Take a look around. The smallest thing may inspire you. God is truly great.

    Kathy

    Day +1127: Ah, distinctly I remember, it was in the bleak December…

    “…and each separate dying ember wrought its ghost upon the floor”

    My mind is laced with sleep; worried, troubled dreams run deep
    …Dream, Dream, Dread…

    “… a nocturnal vacation, unnecessary sedation, you want to feel at home ’cause you belong…”

    Nightmare

    Nightmare? A dream in 3D…

    She must journey on, what else is there when no other wisdom can be drawn upon?
    Black blood stains mark the passage upon the jagged frozen ground,
    A red moon drowned within the clouds, phantoms hide ahead, no other sounds,
    She peers into the night, uncertain of her visions, determined in her plight
    Yet, she continues to journey on…

    Blood seeps, a little does she stumble, the ground reels, she does not tumble,
    The motion rides from gut to brain, shakes the body to the core – always sore,
    Instinctively her crippled hand clutches at a cane, launching another storm of pain
    Lightning creeps up her arm and implodes upon the brain – breathe
    The icy air stabs the lungs and tries to kill, yet she musters all her will – journey on

    Assaulted eyes try to find the shape of an entropic house within the mind,
    A place of peace? A trollish caretaker shatters the illusion,
    He looks but does not see and comes to his own conclusion,
    Hence, with a withered smile, serves her a pile of bile, her senses reel, the gut turns to mud,
    Another bite of noxious goo, remember it’s all good for you – journey on.

    A weary traveler, she seeks some rest, and so to bed she does stumble,
    A wave of fire, a flame of frost throughout the night she is tossed,
    The skin and body shrink and do not embrace to be at point in the same place.
    The morning comes, and there she sits, a smile to say she’ll never quit
    I ask her what she’ll do today – she smiles again and says: journey far away.

    Cancer is a nightmare, not a gift! Unless you take the meaning of the word in German: Poison.

    Ok, a little of the dark side seemed appropriate (well appropriate for me anyhow). All in all, Karen is doing well and has her “little” side effects. All perfectly normal and hence, when I thought about what it would be like for me to be that “normal” you get some of the 20 lines above.

    “…life would suck without you… “

    In my tradition, I’ve buried three tag lines within this blog. Thank you to those who keep playing our little game. It is often good to know someone remembers!

    Happy New Year – 2014. Originally, this wasn’t meant to be the New Year’s post; maybe a bit reflective and speculative would have been appropriate, but we tend to shy away from the dark. Yes, we are grateful, thankful to friends, family and the whole medical profession (witch doctors included), but then again, one can always look forward, too … and hope for things to be a little bit better. Twenty lines may not be much to sum up a year, devoid of crises isn’t a bad thing either, but the little 20 lines weave thru the symptoms, ailments, and annoyances of ever changing “normal”.

    So, best wishes to all the travelers out there, and also to the one or two fools like me, who don’t realize that we are travelers as well!

    “…and all you touch and all you see…
    Is all your life will ever be…”

    Enjoy life! Lest fate becomes fickle.

    Happy New Year!

    Cheers,
    Michael

    Day +1123: I’m bleeding out, I’m bleeding out for you…

    ECP Therapy12/27/2013: Seated in a comfy recliner with my iPad, I’m in the midst of my first ECP treatment at Johns Hopkins this afternoon. I’m learning the new routine. Vitals checked, large needle inserted in port (small ouch), nothing happens, nurse Joyce frowns. Heparin flush, blood observed…ah, that’s better. Moments later the machine complains…beeping. Occlusion. Joyce frowns again: “Do you know what size port you got? It seems small.” Images of port replacement immediately flash silently through my mind: Please, no, not again. Not another mistake, another procedure, another delay. Another heparin flush. I hold my breath. Joyce smiles. “Now it’s flowing.” During the next hour, this scene is repeated several times. Finally the first of three draws is complete….

    Extracorporeal Photopheresis (ECP)

    In 1972, medical technologist Herb Cullis invented the first blood cell separator, the Fenwal CS3000™. The prototype has been on display at the Smithsonian Institution in Washington, D.C. since 2002 and is claimed to be the only invention on display while still in production. An estimated count of 3,500 machines worldwide are still in active use for apheresis (from Latin aphaeresis – to take away), a procedure where blood is drawn and separated into its components via centrifugation (see diagram below). Some components are retained, and the rest reinfused.
    Apheresis
    Photopheresis, invented by Dr. Richard Edelson at Yale University in the early 1980s, is a type of apheresis in which white blood cells (buffy coat in diagram) are treated with a photoactive drug and then exposed to ultraviolet (UVA) light before reinfusion. Photoactive drugs are inert until they’re irradiated. The term extracorporeal means simply that the cells are treated outside the body. This treatment originally targeted cutaneous T-cell lymphoma but is now used to treat graft-versus-host disease (GvHD), organ transplant rejection, and a number of autoimmune disorders, as well.

    Advantages

  • ECP is very safe, having fewer acute side effects and less toxicity than systemic drug therapies. No long-term side effects have been observed.
  • Hooked Up

  • In contrast to immunosuppressant and steroid therapies, ECP does not suppress the immune system and therefore does not add to the risk for opportunistic infections.
  • Unlike PUVA or UVA1 phototherapies or topical drugs, ECP treats multi-organ GvHD.
  • Secondary malignancies have not been associated with ECP.
  • ECP retains graft-versus-leukemia effects so does not increase risk for relapse associated with the use of conventional immunosuppressants.
  • Disadvantages

  • It may take months of treatment to see a response, and overall response rates are estimated at 50-60%.
  • ECP is expensive, ~$4600 per treatment.
  • Therapy sessions are time-consuming, 3-4 hours per session.
  • ECP may not be available at a nearby facility.
  • Because intravenous (IV) access is required, most patients have catheters or ports and therefore are at some risk for infection or blood clots. If a port is not used, there is a risk of collapsing the vein.
  • ECP is associated with a few acute side effects from the therapy itself, including increased sensitivity to light, occasional hypotension (low blood pressure), mild fever, itching, or general tiredness and lethargy. My apheresis nurses say that very few of their patients complain of any side effects.
  • Specifics of My ECP Therapy

  • I receive treatments twice a week at Johns Hopkins, using the THERAKOS™ UVAR XTS® Photopheresis System pictured below. The photopheresis area is on the opposite side of the same room where I had my UVA1 treatments.
  • My clinical apheresis nurses are Dawn and Joyce. Both are extremely skilled and kind, as well as patient with my seemingly endless questions.
  • JHU Photopheresis Center

  • The machine takes 15 minutes to prime. During this time, a nurse checks my blood pressure and temperature. An IV is started via my port, using a 16 gauge x 1″ high flow, straight, non-coring needle. It hurts a bit going in. A tube of blood is drawn for CBC and CMP tests once a week. I’m connected to the photopheresis machine with plastic tubing.
  • Needle

  • About 10% of my blood is treated each session in three “large bowl” cycles of 225ml each. Volume is estimated based on body weight.
  • Each cycle, whole blood is drawn and separated by the centrifuge. White cells (buffy coat) are retained, and red cells, platelets, and plasma are reinfused via my port to complete the cycle. The pictured tray of cells look slightly peachy pink because a few red cells and platelets inevitably end up in the mix.
  • Buffy Coat

  • After the third cycle, the bag of about 250ml of accumulated buffy coat cells are injected with a syringe (~3-5cc) of the photoactive drug, methoxsalen, and exposed to UVA light. Time of exposure varies with a baseline of 8 minutes and an additional 1 to 60 minutes calculated by the machine based on hematocrit, volume, and light intensity (bulb age).
  • The treated cells are reinfused via my port.
  • The nurse flushes my port with heparin and disconnects the line. She rechecks my blood pressure and temperature.
  • The entire process takes 3 to 3-1/2 hours. An attending dermatologist and a resident stop by about halfway through to ask how it’s going. DVD movies are available, or I can bring my own. I can eat and drink during the treatment but there are no bathroom breaks. I wish I’d known that before I drank the 24oz bottle of water on my way to the treatment center!
  • That’s about it! The only aftereffect I noticed was fatigue. My port was sore, too, but I don’t think it’s completely healed yet. Let me know if you have questions or notice any errors/misinformation. I’ll keep you posted with my progress.

    Day +1117: If you’re going through hell, keep on going…

    The Open Road“Well you know those times
    When you feel like there’s a sign there on your back
    Says, ‘I don’t mind if ya kick me.’
    Seems like everybody has.
    Things go from bad to worse.
    You’d think they can’t get worse than that,
    And then they do.

    “If you’re going through hell
    Keep on going, don’t slow down.
    If you’re scared, don’t show it.
    You might get out
    Before the devil even knows you’re there.”

    12/21/2013: Recovery is a marathon, not a sprint. This mantra can be particularly difficult to remember during the holidays if your world is topsy-turvy. Today we’re very pleased to bring you an inspiring guest post from a fellow caregiver. Deb kindly has permitted us to reprint her recent Caring Bridge update. Celebrating Day +74, she and her husband, Doug, have cleared many major hurdles during the past year. Here’s hoping for a smoother path in 2014!


    Day +74 – Dec 21, 2013 5:36 PM

    One year ago today the Mayans said that the world would end. We did not experience the world ending, but we certainly had our own apocalypse. It was one year ago today that Doug received the news that he had MDS. Our world was turned on end! But gradually things have gotten better. We will never be the same and our new “normal” is quite different from what we ever pictured. But we both can say once again and with conviction that, “Life is good.”

    It is amazing to look back at everything we have done and everything we have come through. Some of the things my husband has endured, I would not wish upon anyone. But as with many experiences in life, it has taught us a myriad of things.

    You really don’t know how strong you are until you are put to the test. That test is usually different for everyone. We have learned that you face it, do it, and get through it. For if you don’t, you will not survive. There may be times when you are ready to crumble and think that there is NO way that you can go on. But you do. And then you do it again.

    Things I thought I would never do:
    1. Flush Doug’s catheter on his chest port every day–me wielding a syringe? Who knew?
    2. Help my mom learn how to prick her finger and get more blood out. I have never been a fan of the sight of blood. Now I know how important and lifesaving it can be!
    3. Attend my brother’s funeral. You always think there is more time. He and I were so close all through our lives–very different, but very close.
    4. Drive in Chicago area rush hour traffic and only be worried about the man sitting next to me in the passenger’s seat.
    5. Stop in that same traffic on the side of the road and talk to the valet!!!
    6. Coordinate things at the hotel while trying to coordinate Doug’s release at the hospital.
    7. Talk to the doctors and nurses on a daily basis–joking, questioning, worrying–all of us together!

    Doug and I watched It’s a Wonderful Life last night. We usually try to watch it every Christmas. But we certainly had a different perspective in watching it this year.

    Two very good friends stopped by to visit today. What fun! More reminders of what makes life good.

    What the next year will bring, none of us know. But hopefully we can remember that it is a wonderful life, and it is good:)

    D.S.

    Deb and Doug, thanks again for allowing us to share this. Wishing you both a very Merry Christmas and the happiest of new years.

    Karen & Michael

    Day +1111: I couldn’’t live without you, baby…

    Merry Christmas“Sometimes, it feels like I’’m gonna break.
    Sometimes, this world gives more than I can take.
    Sometimes, sunshine gets lost in the rain.
    And it keeps pouring down
    It just keeps coming down.
    This life would kill me If I didn’’t have you….
    You were made for me.”

    12/15/2013: Greetings and happy holidays! It’s been a busy couple of weeks. We finally got around to a belated celebratory rebirthday lunch with my family at a local Chinese restaurant yesterday.

    First, the great news I received via email Friday and the reason for today’s tagline, dedicated to my donor, Mary Lou

    “Bone marrow results show no evidence of disease with 100% donor. Enjoy the holidays.”

    If you’re looking for the perfect gift this holiday season, sign up for the Marrow Registry. It’s hard to top the gift of life!

    Hematology 12/5/2013

    We awakened to a dense fog and barely made it to my appointment on time despite leaving home extra early. Michael wore a mask to prevent spreading the respiratory infection he caught from me. We’re both better now, just a bit of lingering phlegm and cough.

    Only 3 vials of blood drawn, one less than last year! They did a full panel – CBC, CMP, TSH, T4, T3, ferritin, magnesium, and LDH. The results were good:

    December 5:
    imageWBC: 10420 (ref 4500.-11000.)
    ANC: 4340 (ref 1500.-7800.)
    Platelets: 460 (ref 150-350)
    RBC: 4.39 (ref 4.00-5.20)
    HGB (hemoglobin): 13.9 (ref 12.00-15.00)
    HCT (hematocrit): 41.7 (ref 36.00-46.00)
    Bilirubin: 0.7 (ref 0.1-1.2)
    AST: 31 (ref 0-31)
    ALT: 19 (ref 0-31)
    Alkaline Phosphatase: 92 (ref 30-120)
    Ferritin: 389 (ref 13-150)

    No immunizations this year, so we had some time before my bone marrow biopsy (BMB). We picked up my cyclosporine prescription refill (the subject of my prior post) and stopped by the dental clinic (more on that below).

    I tried to keep my anxiety at bay as I awaited the BMB. It’s funny, I was terrified before my first in January 2010 and then found it wasn’t bad at all. After several more with no problems, I was quite relaxed about the whole process. But then came the difficult #8 two years ago. Even though last year wasn’t too bad, I couldn’t erase the one before it from my mind. When last year’s tech, Don, showed up to take me to the procedure room, I breathed a big sigh of relief. He had been very proficient and had had no trouble getting a good sample with only a brief episode of pain. This BMB, my 10th, was again done quickly and easily and painful only for a moment. It stayed sore a few days this time, and I had some sciatic pain when walking or lying down. All in all, not bad though. I know some facilities don’t continue doing BMBs after the first year or two but I like the peace of mind that comes with “100% donor/no evidence of disease” – well worth the temporary discomfort to me. Johns Hopkins does them annually for 5 years post transplant, so it’s 3 down, 2 to go (knock wood).

    More waiting – this time we went to the cafeteria and had lunch, much more enjoyable and easy to consume than it had been on the past two yearly exam days.

    After lunch, we saw the transplant nurse practitioner (NP) and doctor. I went in, determined to maintain a positive attitude and to not make any sarcastic remarks, no matter what. The visit went surprisingly well and I slipped only once. After I commented that this was my 10th BMB, Dr. Jones said, “Oh, I’ve only had six. Of course, not for the same reason.” I jokingly blurted, “Oh, you practiced on yourself using a hand mirror.” His back was to me so I couldn’t see his reaction but he stammered something like, “No, no – nothing like that.” Michael was facing him and told me later that I “got him” – so much for good intentions. I can’t help myself sometimes.

    Dr. Jones looked at my skin GvHD and said he thought it looked better than when he’d last seen me. I agreed, and told him I was going to try the ECP (extracorporeal photopheresis) because the dermatologist didn’t think the UVA1 produced enough positive change. The ECP will tone down my immune system. I asked if it could increase my risk for relapse. He assured me that studies show a little GvHD helps prevent MDS relapse but there’s no evidence that more is better; he said I’d had quite enough. Finally, we are in agreement on this issue.

    I asked about my raised right hemidiaphragm, and he poked and prodded my midsection. He said any abdominal issues would have shown up in my blood work, and he couldn’t feel anything problematic. (In fact, I later looked up my results from last year’s swallow study and saw that my right hemidiaphragm was slightly raised a year ago and not considered a problem then either. I guess it’s just my normal.)

    Audra, the NP, said she’d try to get me an appointment for a bone density scan the same day as my first ECP on December 27th. I requested a pulmonary function test but she said there was no justification to order one. I also told her about my dental problems, and she said they’d had a difficult time with the Hopkins dental clinic when trying to do referrals for their patients – and they’re part of the same hospital!

    I asked how often I should get blood work between annual visits. Dr. Jones said he wanted to see me in three months to assess my progress with the ECP and my GvHD.

    So, on the way out, we made an appointment for March 27th and were on the road well before rush hour – excellent timing and not a bad day.

    Dermatology 12/12/2013

    Vortex PortI had a port implanted last Thursday in preparation for my photopheresis treatments. Click the thumbnail for a description. Mine is the titanium/silicon/single model. My sister went with me since I couldn’t drive home after the general anaesthesia. I had to arrive at 9 a.m. for a 10:30 procedure. As it turned out, I didn’t get into the operating room until after noon. I’m good at waiting but I was simultaneously hungry, thirsty, and nauseated after not eating or drinking for 14 hours. After the implant was completed, I awakened with no ill effects New PortMy first request in recovery was food, and I was surprised when the nurse brought me a turkey wrap, Goldfish crackers, a small chocolate bar and choice of beverage. Not bad!

    I remained hungry despite the snack, so we stopped at Chili’s for salads on the way home. By the time we finished, the pain killers were wearing off and I was feeling a little woozy. It hurt more than I expected and has remained sore and bruised, although there’s no sign of infection, and it is healing. I still can’t sleep on my right side. I don’t remember the Hickman catheter being this sore.

    Ophthalmology 12/13/2013

    My port was still so sore Friday morning that Michael decided to drive me to my eye appointment and go into work a little late. I wanted him to meet my ophthalmologist, Dr. Prescott, anyway. She is super. We talked about the prescription error. She looked at both bottles and said that I needed to talk to the pharmacy supervisor about the mixup which was apparently caused by the verifier. She noted that the drugs were most likely compounded correctly, so someone else probably got the cyclosporine intended for me when I got their VFEND. I hadn’t thought of that – the compounds are prepared only when there’s a specific order. I haven’t contacted them yet but plan to call Monday.

    The doctor agrees that I shouldn’t use any more cyclosporine or Restasis drops and wants me to do a three-week tapering course (3x/2x/1x daily) of mild steroid Lotemax drops to calm the irritation and to use Lotemax ointment nightly instead of every other night as I have been. She said my eyes are definitely drier than at my last visit in October. She, too, was extremely disappointed about the drug mixup and the fact that I wasn’t able to tolerate the stronger cyclosporine after all. She had told others about my apparent sensitivity to inert ingredients in Restasis and how great it was that I could use the stronger cyclosporine instead (so we thought). After receiving my note last week, she also researched VFEND to see if there were any studies or indications that it might have an off-label benefit for dry eyes. Sadly, she found nothing. She concurred with my assessment that the effect of VFEND had been neutral. My eyes felt and saw better without the irritating Restasis but gradually dried out again after not using it.

    Like me, she hopes my eyes will benefit from the ECP treatments. There’s a good chance they will if the dryness is caused by GvHD. She wants to see me in six weeks on Feb. 7 to reassess.

    Dental 12/14/2013

    As I mentioned earlier, we went to the Hopkins dental clinic in between appointments on December 5th (more than a week after our prior visit and subsequent referral from my regular dentist). Recall that I’d been trying to schedule an appointment since Nov. 19th with none of my phone calls returned. The staff were once again fairly rude and kept us waiting. Eventually I was told that the soonest appointment I could have would be January 22nd. Frustrated at their lack of responsiveness, I told them to forget it and walked out. On the way home, I telephoned my primary insurance and asked for the name of an in-network provider close to home and was dismayed to learn the closest one was in Baltimore. At the thought of having to drive all the way downtown for a new doctor, I began to have second thoughts about Hopkins. It’s comforting to have everything in a central, familiar location plus Johns Hopkins now has a nice patient portal where I access my records and contact my doctors online. When I got home, I called and left a conciliatory voice mail, indicating that I had walked out because I was late for another appointment and asking them to call so I could schedule, even if I couldn’t see anyone until late January. Of course, they never returned my call. Fortunately, I went online the next day and discovered an in-network oral surgeon about a 30 minute drive from home. They were so nice on the phone that I wondered why I’d wasted my time with Hopkins. They offered me an appointment within a few days but I had a schedule conflict so made it for Saturday, December 14th.

    They first did a panoramic x-ray of my jaw and had me complete a load of paperwork. Then I had a preliminary exam by a technician followed by a thorough exam and consultation with the surgeon, Dr. Yalamanchili. I liked her very much. She asked lots of questions about my medical history, with encouraging comments every step of the way.

    After peering in and poking around my mouth, she said the outer tissue looks pink and healthy but she thinks there is some splintering of the underlying bone and asked if I’d had any injury there. She then showed me my x-ray, noting that my left jaw was much darker than my right on the image, indicating something was going on there. She said it is a good sign that the swelling and soreness improved with the antibiotics I took for my cold – malignancies don’t generally get better with antibiotics. However, it is possible that the improvement had nothing to do with the antibiotics, that the timing of the natural healing was coincidental.

    She wants to wait two weeks, and if it isn’t completely healed, she’ll open the area and clean it out and do a biopsy. She said she doesn’t think anything serious is wrong but wants to be cautious because of my history. I agree. For the same reason, she also wants me to take a prophylactic antibiotic (amoxicillin) immediately before and after the surgery which will be done with general sedation on December 28th. She says the aftermath will be similar to having a wisdom tooth extracted – pain and swelling for several days after the surgery. I’m not happy about that but again, the peace of mind will be worth the pain. After two unrelated cancer diagnoses in the past 4 years, I’m rather paranoid!

    Fun Stuff

    Our blog mostly consists of medical updates but sometimes I like to remind everyone that the medical stuff is truly a small part of our lives overall. Here’s a sampling of our “other life”: For my 60th birthday in October, we spent a beautiful long weekend at Lake Tahoe with my sister and brother-in-law. My niece and I had plenty of good food and good fun in NYC on November 15th. We treated each other to the spectacular Rockettes Christmas Show. It’s truly amazing how they integrate the live and digital components. Also in November, Michael and I visited a friend in Cumberland (western Maryland). She has many adorable cats and kittens. It was very hard to resist bringing one home but we already have six, more than enough. Those who know me know my love of winter and snow. Last year, we had disappointingly little, maybe a few inches the entire winter. This year, we’ve already had three snowfalls in a single week – 7″ on December 8th, 4″ on December 10th, and another 3″ before turning into rain on December 14th. I realize these aren’t impressive amounts but hey, very beautiful nonetheless.

    Taglines

    Nice to see all the recent tagline comments. Thank you!

  • Day +1055: Ultraviolet, U2 (IDed by Heather)
  • Day +1061: Touch of Grey, Grateful Dead (no one IDed – I expected Deb and Mike to chime in on this one)
  • Day +1096: Miracle Cure, The Who (IDed by Cathy)
  • Day +1096: Yesterday, Beatles (IDed by Cathy)
  • Day +1096: Memories of East Texas, Michelle Shocked (IDed by Cathy)
  • Day +1100: I’m Going Slightly Mad, Queen (IDed by Cathy)
  • Day +1103: Ironic, Alanis Morissette (IDed by Heather, Leslie, Dana)
  • Cathy is the superstar with 4 IDs this time! Way to go!

    Day +1103: A little too ironic…and, yeah, I really do think…

    “It’s like rain on your wedding day
    It’s a free ride when you’ve already paid
    It’s the good advice that you just didn’t take
    Who would’ve thought… it figures”

    12/7/2013: In between appointments at Johns Hopkins Thursday, we picked up my first refill for the cyclosporine 1% eye drops. They have to be compounded specially by one of the outpatient pharmacies there. Recall these are the “miracle” drops I talked about last post. I told the tale of being allergic to inert ingredients in Restasis a few times throughout the day to staff updating my medication list. Believe me, after the two-year struggle with irritated eyes and blurred vision, I was very excited about this discovery and apparent solution.

    Fast forward to Thursday night. One drop in each eye from the fresh, new bottle, as I’ve done with the old since October 21. WHOA! That burns like crazy!! What’s going on?

    I remove the old bottle from the trash to compare. Each eyedrop bottle is delivered packed in one of the regular amber plastic pill bottles. Prescription labels match: “c-cyclosporine 1% ophth solution Place one drop in each eye nightly.”

    ComparisonI next examine the new eyedrop bottle. It’s smaller than the old wrapped in a stick-on label with Johns Hopkins, batch number, date, and c-cyclosporine 1%. I peel the label and see Artificial Tears commercially printed directly on the bottle. This makes sense as I was told this is what they use for a compounding base. However, the old bottle is not the same. It’s a generic clear plastic bottle with just the stick-on label with Johns Hopkins, batch number, date and c-VFEND 1%.

    I had noticed the word “VFEND” before but thought it was a stock number or generic name so hadn’t paid much attention. After seeing the difference in the new label, however, I looked it up on the internet. To my surprise and horror, I discovered VFEND is an antifungal drug used to treat a specific type of corneal infection that I’ve never had. The pharmacy filled my original prescription incorrectly back in October! I’ve used the wrong medication for six and a half weeks.

    It’s midnight when I realize this but I leave a lengthy message for my ophthalmologist using the Hopkins patient portal, explaining what has happened and asking to see her as soon as possible. I want to assure no harm has been done by unknowingly using the wrong prescription and having stopped the Restasis/cyclosporine abruptly with no tapering. If all is okay, I don’t want to resume either the Restasis or stronger cyclosporine compound.

    Fast forward another 12 hours. I skipped the morning dose and hopped in the car to drive cross town for a vet appointment with my cat. My eyes started burning and my nose running profusely. This is the same thing that had been happening in early October, driving to Hopkins for my phototherapy after my morning Restasis. Only this time, it was much worse. By the time I left the vet, the pain was excruciating. I pulled to the side of the road a couple of times to try flushing my eyes with over the counter drops. Finally, I made it home and rinsed with cold tap water until the pain subsided. My eyes remained swollen, red, and sore the rest of the day. They’re fine again now after another night’s sleep and no more cyclosporine.

    The funny thing is that I questioned both the pharmacy and the doctor on those drops in October when they didn’t burn or irritate my eyes. It seemed too good to be true. But after reassurances from both, I was convinced that the prescription was correct. Because I did my questioning via phone and email, and no one else asked me the right questions, the VFEND label was neither noticed nor discussed.

    I see my ophthalmologist Friday and will figure out what to do from there. It will be difficult for anyone to persuade me to use any kind of cyclosporine in my eyes ever again. I need to file a formal complaint about the pharmacy error. Medication errors could have very serious consequences.

    Will let you know how it all turns out!

    Day +1100: When the outside temperature rises…

    “And the meaning is oh so clear
    One thousand and one yellow daffodils
    Begin to dance in front of you, oh dear
    Are they trying to tell you something?
    You’re missing that one final screw…”

    12/4/2013: Greetings! Tomorrow I have my 3rd annual checkup and tenth bone marrow biopsy, so I figured I’d better catch up on the past couple of months beforehand.

    Ophthalmology

    Recall that because I’ve reacted so badly to Restasis for the past two years, Dr. Prescott prescribed a stronger cyclosporine solution (1% vs. 0.05%) to use only at night before I go to bed. That way, I wouldn’t need to use my eyes for many hours after applying the drops. I first tried the new prescription on October 21, anticipating strong burning from the 20x stronger mix. Imagine my surprise when I felt no irritation whatsoever! Next night, same thing, so I experimentally tried reading afterwards instead of going straight to bed. With Restasis, this would have caused blurred vision and horrible irritation. My eyes felt fine, and my vision was clear! It turns out that I must be allergic to one of the inert ingredients in Restasis rather than the cyclosporine! I delightedly let Dr. Prescott know, and she said to try the new drops twice daily. I’ve done so since with excellent results. Lesson learned: if you don’t think something is quite right, don’t give up mentioning it, even if you begin to sound like a broken record. In addition to the drops at night, I alternate using Genteal Nighttime Ointment and a mild steroid ointment, Lotemax.

    Dermatology

    After 20 UVA1 phototherapy treatments, I saw Dr. Sweren on November 27. His greeting: “What’s the definition of insanity?”
    My reply: “Repeating the same action over and over and expecting a different result.”
    Him: “So why can’t the guys in Washington figure that out?”

    The first couple of weeks, the UVA1 treatments seemed to be helping. The spot on my back was no longer sore at all, even though it didn’t look much different. But the soreness gradually returned. Instead of improving with the increased levels, it grew worse again. Dr. Sweren recommends trying extracorporeal photopheresis (ECP) instead. The nurse inspected my veins and said they look tiny. The photopheresis needle is large with a lot of suction, so I’m going to have a port implanted next week. I envisioned something like my Hickman with dangles but they assure me the port is completely under the skin and maintenance free. I’ll let you know! The port needs to heal for two weeks, so I won’t begin the new treatments until after Christmas, December 27th. I’ll write a post, too, explaining the ECP procedure at some point.

    In the 10 days since I stopped UVA1, my back has pretty much reverted to its original pretreatment rawness on the one spot. I guess that although the phototherapy wasn’t curing the problem, it was keeping it from getting worse. I also got a nice tan. ECP is essentially the same process but applied to the blood instead of the skin to try to calm down my immune system.

    Otolaryngology

    I had my four-month checkup with my surgeon, Dr. Gourin, on November 19th. She peered at and poked and prodded my mouth and tongue and said everything looks good. She planned to spare me from the through-the-nose scope this visit but I told her the peace of mind it would bring more than outweighed the temporary discomfort. So, scope me she did and again announced that everything looks great 13 months post surgeries. I breathed a huge sigh of relief and thanked her profusely. She noted once more how great it was that I had been able to avoid radiation and told me to return in three months for another check. While I was there, I mentioned that my gums were a little sore but they get like that sometimes and then are fine in a day or two.

    Dental

    Instead of getting better the next day, my gums became very sore on my left side, too painful to chew on that side at all. Fearful that my lower left rear molar was abscessing, I saw my dentist two days later, November 22. An x-ray showed nothing wrong with the tooth. He examined and felt the area, and said, “I think I know what the problem is,” and guided my fingers to some bony areas inside my mouth. “These are called exostoses,” he said. “75% of people don’t have these.” (He wondered why I laughed and muttered, “Of course they don’t.”) Based on his examination, he said he thought the problem was due to a splinter from an exostosis beyond my last molar, and I should see an oral surgeon.

    I called the Johns Hopkins dental clinic the same afternoon and received a recording, “We are away from the desk or on another call. Please leave a detailed message with your name, nature of your call, and number and we’ll return your call as soon as possible.” I left a message repeating what my dentist said and asked for a call back. I also left a portal message online for my otolaryngologist, explaining what was going on. She responded she would put in a referral and see if her office could expedite getting me an appointment. By Tuesday, November 26, I’d not heard from dental, so I tried again, same message. Wednesday, Michael went in person to the dental clinic while I was in dermatology and was told (rather rudely) I could not have an oral surgery consultation without a referral from my dentist and there was no referral in the system for me. We obtained business cards with a fax number to send the referral, and stopped at my dentist on the way home. He faxed them the referral right away.

    By the time I got home, I was miserable, with my jaw swollen and sore and also coming down with cold or flu. I missed Thanksgiving dinner at my in-laws’ on Thursday and slept the day away.

    Friday, I was feverish, aching, and congested with a very sore throat and swelling on my left neck. Michael took me to the urgent care clinic where I was prescribed antibiotics for the respiratory infection. (More on that later.)

    Because of Thanksgiving, I expected to hear from Hopkins dental on Monday. When I hadn’t, I left another detailed message, asking that they at least let me know if they received the referral and if anything else was needed. Tuesday, nothing, so I left one more message. Today, nothing still, an entire week after the referral was sent. No matter when I call, the recording is the same. I’m thoroughly disgusted and plan to stop by there again tomorrow to find out what’s going on. At least the antibiotic settled down the inflammation, and I’m able to chew again on that side.

    Cardiopulmonary

    Chest X-RayWhen I went to the clinic for my respiratory infection, my heart rate was elevated, and I was experiencing some shortness of breath, so they did an EKG and a chest x-ray. Thankfully, the EKG looked fine. The PA said my x-ray was a bit odd with a concave curved area at the base of my right lung. She said she’d forward the films to their radiologist who would call me with results in a few days. They also provided me with a copy of the films on CD. My report came back fine as far as my lungs are concerned – no sign of pneumonia or other anomaly. The x-ray tech told me she had noticed the raised diaphragm on the right (hence, the curved area) and that it would be a good idea to show the images to my primary care physician to determine if they wanted to do a different type of scan, such as a liver ultrasound or CT, to check for enlargement. I’m taking the film with me to my exam tomorrow. In the meantime, I looked on the internet and discovered a “raised hemidiaphragm” can have many causes and is not necessarily a problem. It might have even been like that all along.

    Some good news is that I’m mostly over my respiratory infection. Although I still have some phlegm and coughing, I’m feeling good. I was really miserable over the long weekend.

    That’s it for tonight – a long day at Hopkins tomorrow! If I procrastinate posting, don’t worry. It is generally safe to assume that no news is good news as far as our blog is concerned. Also, it will probably take a week to receive results from tomorrow’s tests.

    In the meantime, hoping to hear some guesses from you on the tag lines from the past several posts!

    Day +1096: Extra! Extra!

    “Read all about it
    The Pinball Wizard in the Miracle Cure!
    Extra! Extra!
    Read all about it
    EXTRA!”

    Happy Rebirthday, Mausi!

    A MUD BMT 30 November 2010.

    “…Yesterday, all my troubles seemed so far away…”

    In contrast, today is a very mundane event; Karen has been battling the flu and we spent some time yesterday at the clinic to get inhalant and antibiotics and a bizarre X-ray ( Will save that one for another time). Today, she dragged herself to the sofa and is only taking visits from the cats. Dory Alexander, Maya, Moritz and Samson all checking up on her. Delylah and Tommy maintain watch with me. The collective we, have been trying to “force liquids” – can’t remember the line that implies that this would be good advice for a camel – not sure medically. Time seems to be what is required now and thanks to Mary Lou that is what we have.

    Ok, Karen is sitting up and resting now ( yes, I really type that slowly ).

    “…Their lives ran in circles so small,
    They thought they’d seen it all
    And they couldn’t make a place for
    A girl who’d seen the ocean…”

    An obtuse third song for the masses. Well, maybe that is the point, crisis holds our interest, the rest of the time the spilled coffee rates right up there with Armageddon!

    Happy Rebirthday, Mausi! Hope you feel better soon! For the rest of Karen’s fellow travelers – enjoy each moment today and far into the future!

    Cheers,
    Michael

    Day +1061: Every silver lining’s got a touch of grey…

    Happy Birthday
    “Oh well, a touch of grey
    Kind of suits you anyway
    That was all I had to say
    It’s all right
    I will get by
    I will get by
    I will get by
    I will survive”

    10/26/2013: Good morning, and Happy Birthday to me! I’ve always loved my birthday. What better day to celebrate than the beginning of your own existence? When I was 55, I naïvely thought I’d probably live to be 100. My grandmother lived to age 89, and my mother is still going strong at 92; each generation lives a little longer, right? A brief year later, I had little hope of seeing 57. It’s been quite a roller coaster ride but here I am, very happy to be celebrating my 60th with 3 of my favorite people – my husband of 29 years and love of my life, my sister, and my brother-in-law. Life is good.

    Day +1055: Baby, baby, baby, light my way…

    10/20/2013: I’m in full birthday/Halloween mode. We had our annual anniversary pizza at Bertucci’s on the 11th, the beginning of the traditional two week gift-a-day marathon. Michael outdid himself this year, complete with Halloween decorations and a Hello Kitty theme. I’m loving it! We’re celebrating my 60th birthday this week with a long weekend at Lake Tahoe October 24th-27th with my sister and brother-in-law.
    Birthday

    Dermatology

    I’ve completed 6 UVA1 treatments at 30 joules and 2 at 50 joules. The added 7 minutes and 24 seconds (for a total of 18m 31s) hasn’t bothered me at all. I count to 100, shift 1/8 turn, move my hands to the top bars, to the side bars, or to hold up my breasts for another 100 count, and repeat until the time is up. I have a slight tan. I’ve been using sunscreen on my face. The hyperpigmented and pink areas look about the same all over but the soreness is mostly gone from my back (knock wood). My overall stiffness, aches, and pains come and go and may not be related to the GvHD at all. The primary UVA1 side effect I’ve noticed is extremely dry skin. I use Aquaphor to rehydrate. I also drink more water. The 45 minute drive each way (an hour by the time I park and get into the building) hasn’t been bad at all since I can choose appointment times that don’t coincide with rush hour.

    Opthalmology

    I had my 4 month check-up with Dr. Prescott at the local Wilmer clinic on October 18th. My eyes look medically better than last time with fewer dry spots; however, externally, they still look red and feel irritated. My left punctal plug fell out again. Dr. Prescott tried squirting fluid into the duct and determined it’s blocked by scar tissue, forming a natural plug. That works in my favor since it obviates the need for the artificial plug or cauterization. The Restasis (cyclosporine) keeps the GvHD from doing permanent damage but is extremely irritating. I’m apparently more sensitive to it than most. For most patients, it burns for a little while immediately after administering the drops but is then no problem. For me, it doesn’t burn at all when I use the drops but my eyes are extremely irritated for many hours if I try to focus on anything – driving, computing, reading – and are also excruciatingly light sensitive. I’m okay at night because I go to bed right after I put the drops in. So, Dr. Prescott decided to try me on a stronger cyclosporine solution once daily instead of Restasis twice daily. I have to pick up the prescription at Hopkins as it is specially compounded there. In addition, I’ll continue to use over the counter lubricating drops during the day and alternate Lotemax steroid ointment and Genteal ointment at night. I return in 4 months, February 21st.

    Tag Lines

    We haven’t had many participants in the tag line game lately.

  • Day +1012: We Are the Champions, Freddy Mercury (Queen)
    …September Song from And All That and More, Kurt Weill
    …You’ve Got Your Troubles, The Fortunes
  • Day +1034: Remedy, Jason Mraz (IDed by Leslie)
  • Day +1035: The Time Warp from The Rocky Horror Picture Show (IDed by Sherry and Chris)
  • Day +1042: Blinded by the Light, Manfred Mann’s Earth Band, written by Bruce Springsteen
  • Day +1043: You Light Up My Life, Debby Boone [Note – I never liked this sappy song but I figured I should use it because the lyrics fit so well and, since it was the most commercially successful single of the 1970s, I figured a lot of people would know it. Alas, no IDs…]
  • Day +1043: You light up my life…

    “You give me hope to carry on…”
    UVA1 booth 10/8/2013: Greetings! A lovely fall day here. As I write, I’m enjoying the sights and sounds of our fabulous Halloween decorations. Continuing yesterday’s update…

    Dermatology – UVA1 Phototherapy

    I hope yesterday’s post didn’t fall into the realm of TMI. Today should be better.

    Pictured left is the Daavlin ML24000 UVA1 unit I’ve been using at Johns Hopkins. Click on the photo to enlarge or the link to see the manufacturer’s description. The four light towers alternate with open space. There are hand grasps – circular bars in the ceiling and vertical bars in the side openings – to help expose hard to reach areas. Each tower contains six UVA1 spectrum light bulbs backed by reflectors to diffuse the light more evenly. Because the lights generate a lot of heat, a stong fan circulates cool air around the inside of the booth. If I close my eyes, there’s the sensation of standing in the hot sun with a stiff, cool breeze. Aside from the noisy fans, it feels quite pleasant. The phototherapy nurse, Tracey, said I could bring music with headphones to block the noise; however, to avoid holding my phone or iPod, it seems like I’d need a long wire from the headphones to leave the source outside on the chair – there are no pockets or places to clip a phone when you’re naked. Seems like too much trouble for the short time I’m in there. So far, the fan hasn’t really bothered me. Because of the green goggles, everything has a rather eerie green glow except that the blacklight effect makes my fingernails and toenails glow bright white.

    A curtain, pictured below, surrounds the booth and chair for privacy. Each session, I undress completely, don my goggles, enter the machine, and yell to Tracey that I’m ready. She sets the timers and turns on the machine. The lights shut off automatically after the set time but the fan keeps running. I learned after the first time to jump out as soon as the lights go off. Otherwise, it’s cold!

    Before my first treatment, Tracey examined me to establish my baseline. She’ll check again tomorrow before my 4th treatment to assure I’m having no adverse effects. It usually takes 10 or more treatments to determine if there’s improvement. My planned treatment schedule is as follows:
    image

  • 30 joules, 6 sessions, 11 minutes 7 seconds each
  • 50 joules, 6 sessions, 18 minutes 31 seconds each
  • 70 joules, 3 sessions, 25 minutes 56 seconds each
  • See doctor to evaluate progress.
  • I chose UVA1 instead of PUVA or extracorporeal photopheresis (ECP) primarily because it’s simple and relatively free of side effects. The photoreactive drug, psoralen, that is required with PUVA therapy is metabolized via the liver and excreted via the kidneys and may cause nausea or an allergic reaction. ECP takes a long time each session to draw the blood, treat it and return it, and I’d probably have needed a port or picc line, a nuisance for maintenance and a potential source of infection. For UVA1, all I have to do is undress and stand in a booth for 11-26 minutes! Besides that, it’s leading edge technology :-).

    UVA1 light does not burn but my skin will darken. I don’t mind that at all! Another short term effect is dryness. I need to drink lots of water and use a good moisturizer (without sunscreen). Potential long term side effects are essentially the same as those from exposure to sunlight – increased risk of skin cancers and photoaging. Because I’ve had so little time in the sun over the course of my lifetime, I’m at an advantage in that respect. My former coworkers jokingly called me the cave woman and once presented me with a Fred Flintstone costume at a staff meeting.

    After only two treatments, the brown patches on my arms, legs, and abdomen seemed lighter. Michael thought so, too. I had some red bumps inside my right forearm, probably a polymorphic light eruption rash from photosensitivity. They disappeared within a day. My skin overall is very slightly darker, noticeable to me but probably not to others who routinely get more sunlight than I. My back is dry and peeling slightly but otherwise unchanged. The most dramatic change I noticed, which may or may not have anything to do with the phototherapy, was a reduction in my overall aches and pains. Tracey said it’s too soon for any discernible results but maybe I’m atypical in a good way this time. Fingers crossed!

    General UVA1 Information

    UV refers to light energy in a range between visible light and x-rays and has three subranges:

  • Infrared 780nm-1mm
  • Visible light 400-700nm (rainbow colors)
    ………………………………….
  • UVA 320-400nm
  • UVB 290-320nm
  • UVC 290-100 nm
    ………………………………….
  • X-Ray 0.01-10nm
  • Sunlight contains UVA, UVB, and UVC. We aren’t exposed to UVC because it’s absorbed by the ozone layer. The UVB rays are absorbed by the outermost layer of skin, the epidermis, and don’t penetrate deeply. They cause sunburn. UVA rays penetrate more deeply and cause tanning as well as aging and carcinogenic effects. Both UVA and UVB rays can be therapeutic for skin conditions because of their effect on the different types of cells, particularly certain T-cells. UVA rays are useful in treating sclerotic conditions but don’t penetrate deeply enough to be effective without the assistance of a photoreactive drug like psoralen. UVA1 light, in the range 340-400nm, has the shorter wavelengths removed and thus penetrates deeper without the drug. It is also believed to affect different cells than UVA. More research is needed to completely understand why and how the various light therapies work.

    UVA1 treatment originated in Germany around 1997 and is still more widely used in Europe than here. The United States didn’t start treating with UVA1 until about 2003. Other parts of the world use higher doses than the US.

  • Low dose UVA1 refers to 10-20 J/cm2 per single dose
  • Medium dose UVA1 refers to 50-60 J/cm2 per single dose
  • High dose UVA1 refers to 130 J/cm2 per single dose
  • The highest dose given at Johns Hopkins is 70 J/cm2, while doses of 130 J/cm2 are routinely given in Europe and New Zealand.

    I’ve linked a couple of interesting articles under “Other useful info…” on the left sidebar in case you’d like more detailed information.

    Day +1042: Blinded by the light…

    “Revved up like a deuce
    Another runner in the night”

    image 10/7/2013: It’s a beautiful (to me) rainy day here – we were long overdue. The tagline is misleading except that it popped into mind as I contemplated the two subjects of today’s post. It’s from a song with some of the funniest misheard lyrics of all times. I always heard the second line as “wrapped up like a deuce” and that’s the thought that hit me the first time I tried on my new lymphedema mask, pictured left.

    Lymphedema Therapy

    I had my last session with the therapist on September 11th and was measured for my custom compression mask that I picked up last Tuesday. I’m supposed to sleep in this monstrosity every night but haven’t quite yet summoned the gumption to try. The sales rep assured me that it should help with my lymphedema anytime at resting heart rate, so I’m wearing it now as I write, minus the removable eye and mouth pieces. The mask is composed of soft, stretchy material lined with varying thicknesses of dense foam, and quilted. It has an adjustable strap that closes with velcro at the top of my head with another behind my neck. There’s a large open area on the back of my head. The fit is intentionally snug. Along with this, I continue the self-massage and facial contortion exercises I described on Day +999 (“Well, we all have a face that we hide away forever….”) Fortunately, my lymphedema is not so severe that I need the mask nightly. I also should order a wedge pillow to elevate my head slightly at night – just haven’t gotten around to doing it yet. I’m very grateful to have had the mask donated jointly by the manufacturer and distributor.

    Dermatology – chronic cutaneous sclerodermoid GvHD

    Chronic cutaneous sclerodermoid GvHDAfter reading Kathy’s comment on my last post, I realized I’ve mentioned the spot on my back quite often over the past year or more but have never attempted to document the progression. For myself and for others who might have similar symptoms, I’ll try to do so now. Note that the described changes occurred gradually over months – very slowly the first year and more rapidly in the last 6 months.

    The photo on the right shows the spot just before I started phototherapy last week. Sorry it’s a bit blurry. Click on the image to zoom in. This started as a small dry, scaly spot about the size of a nickel, first noticed by my physiotherapist in November 2011, 11-1/2 months after my bone marrow transplant. I called it GvHD almost from the start although my hematologist was the only one of my doctors who agreed with me. The spot gradually became larger, darker and the skin thicker. Michael and I think this is my sequence for the lesions on my back:

    1. Intermittent brief, sharp, stabbing pains before any visible change.
    2. Development of what the dermatologist calls “cigarette paper” skin (thin, fragile look)
    3. Development of striations (visible in the photo above the brown spot) – largest area currently about 5″x8″
    4. Hyperpigmentation (brown spot approximately 2″x4″) plus other isolated splotches on arms, legs, back, and abdomen
    5. Hardening/thickening of the darkened skin
    6. Development of spreading pink center starting in the same location as the original dry spot – now about 1″x2″

    The large brown patch is sore, as are smaller ones up near my shoulders on both sides. My entire back feels itchy and irritated most of the time. The scattered brown patches on my arms, legs, and abdomen are not thickened and sore like the ones on my back. They appear mostly at contact pooints – inside upper arms, between thighs, around waist, and under breasts.

    Sometime during the last year, my abdomen became very pebbled; I’m not sure exactly when as I assumed it was cellulite and didn’t pay much attention. Dr. Gaspari at University of Maryland noticed it right away, the reason he suspected sclerotic GvHD and ordered the biopsies. Also, when I stretch my arms and legs out, they look vaguely “lumpy” instead of smooth. The change is subtle, and my skin is generally rather loose, so I didn’t notice right away. My transplant doctor noticed the changes on my lower legs last visit.

    I’m not sure if it’s related but I’ve felt increasingly stiff, sore, and tired over the past months. I hope I don’t sound too miserable – really, I’m not. I’m primarily concerned with stopping the progression before it becomes worse.

    My doctors have all said that the presentation of my GvHD is atypical, so this information may not be useful to others. On the other hand, it might be more common than they think and simply not being diagnosed.

    The hour grows late and the post long. I’ll save my discussion of the UVA1 therapy for another day.

    Goodnight!

    Day +1035: It’s so dreamy…

    image

    “Oh, fantasy free me
    So you can’t see me
    No, not at all
    In another dimension
    With voyeuristic intention
    Well secluded, I see all…”

    9/30/2013: UVA1 Phototherapy Day 1 – I think I look pretty goofy, don’t you? Nothing like the image of the stylish woman in the previous post. But I must confess that I stood there in the Daavlin ML24000, wearing only protective green goggles and a big silly grin, as I imagined myself teleporting in time and space. It’s just a jump to the left….

    Day +1034: Well, something on the surface it stinks…

    “I said something on the surface
    Well it kind of makes me nervous
    To say that you deserve this
    And what kind of God would serve this
    We will cure this dirty old disease

    “Well, if you’ve gots the poison, I’ve gots the remedy
    The remedy is the experience, this is a dangerous liaison
    I says the comedy is that it’s serious
    This is a strange enough new play on words
    I said, the tragedy is that you’re going to spend
    The rest of your nights with the light on
    So shine the light on all of your friends
    Well, it all amounts to nothing in the end

    “I, I won’t worry my life away
    I, I won’t worry my life away”

    9/29/2013: Greetings and Happy Autumn! We’ve been busy decorating the house for my favorite month, October….anniversary, birthday, Halloween. Last year this time, we were preparing for surgeries – has it really been a year already?!

    Dermatology

    I had back to back appointments with University of Maryland and Johns Hopkins dermatologists on September 18th.

    At University, we got the official results from Grand Rounds. The resident, Dr. Schleichter, saw us first and said there’d been a lot of discussion and disagreement at the meeting after they’d all examined me on August 27th. Some thought I might have localized scleroderma or morphea. One pondered why treat at all since it’s hidden under my shirt. I was appalled that any of them thought the issue is cosmetic! However, in the end, all were in agreement for a diagnosis of sclerotic GvHD with recommended phototherapy treatment.

    While awaiting Dr. Gaspari, Michael and I simultaneously noticed a black hand print about 10 feet up from the floor on one of the walls. We looked at each other and had a good laugh as we envisioned someone literally climbing the walls, trying to escape the small, windowless examining room.

    Dr. Gaspari reiterated the sclerotic GvHD diagnosis and recommended four months of PUVA therapy, thrice weekly. I told him my transplant doctor at Johns Hopkins said PUVA was only good for acute GvHD, not chronic, and said the proper treatment is extracorporeal photopheresis. (Recall that my transplant doc didn’t even acknowledge I had GvHD until after I’d been diagnosed at University, despite showing him my symptoms several times over the past two years.) Dr. Gaspari remained professional but disagreed, “My experience has shown otherwise. I’ve had very good results with PUVA.” Michael and I told Dr. Gaspari that we have a lot of faith in his experience and expertise and would like to continue seeing him but get treatments at Hopkins because I’d had my transplant and other cancer surgeries there. He was very understanding and offered to help make coordination of care as easy as possible for me. He knows Dr. Sweren, the Hopkins dermatologist, very well and will forward notes and medical records to him. Ironically, Dr. Sweren actually trained at University of Maryland. I’m to follow up with Dr. Gaspari twice a year. He said he’d be honored to keep me as a patient.

    We then headed two miles crosstown to see Dr. Sweren at Johns Hopkins. He lacked the great “chairside manner” and graciousness of Dr. Gaspari but did seem very knowledgable and provided excellent technical information about the various phototherapy options. Interestingly, he too disagreed with my transplant doctor’s recommended treatment of extracorporeal photopheresis, believing either PUVA or UVA1 would be preferred in my case. We toured the phototherapy room and met a couple of the nurses. I asked if the goal is to stop the progression of the GvHD. Dr. Sweren said, “No, our goal is always try to make it better.” It will take a long time to know if the treatment is effective, and it does not provide a permanent cure. Both Drs. Gaspari and Sweren said that treatment cycles often need to be repeated periodically. Dr. Sweren reassured me that with phototherapy, a patient isn’t locked into a particular therapy – if one isn’t working out for whatever reason, it’s easy to switch. Also, it isn’t a big deal if a session is missed now and then.

    imageSo, I finally have a diagnosis of sclerotic GvHD confirmed by my transplant doctor and dermatologists at both University and Hopkins. It doesn’t appear to be limited to my back. I just didn’t suspect the other areas because I didn’t know what to look for – the pebbled skin on my abdomen and the subtle “lumpiness” on my arms and legs. I’ve also been increasingly stiff and sore all over. Both Michael and I believe that I’d not have been diagnosed at Hopkins if it weren’t for my consultation at University of Maryland with Dr. Gaspari. After hearing about the three phototherapies, those of you who know me won’t be surprised to hear I’m going for the latest and greatest technology, UVA1, more widely used in Europe than in the United States. Hopkins is one of the first US facilities to offer full body standing treatments using the futuristic looking machine pictured here. That’s Dr. Sweren on the right. I’ll write more after my first treatment tomorrow!

    Tag Lines

  • Day +1009: Hey Look Me Over, Cy Coleman and Carolyn Lee
  • Day +1010: Living with a Hernia, Weird Al Yankovic (IDed by Heather)
  • Day +1011: Show Me from My Fair Lady, Alan Jay Lerner and Frederick Loewe (IDed by Linda)
  • Day +1011: You Took the Words Right Out of My Mouth, Meat Loaf
  • Due to lack of responses, I’ll give you some more time for the three songs on Day +1012!

    Day +1012: We are the champions, my friends…

    “And we’ll keep on fighting till the end…”

    9/7/2013: Another inspiring guest post today, this one originally a comment on yesterday’s post. Sherry kindly granted permission to move it here for greater visibility to our readers. She’s even included her own tag line.


    When the autumn weather turns leaves to flame…

    Autumn
    “One hasn’t got time
    For the waiting game

    Oh, the days dwindle down
    To a precious few
    September, November

    And these few precious days
    I’ll spend with you
    These precious days
    I’ll spend with you”

    The days. They are precious. Anyone who has endured the rigors of transplant knows just how precious they are. Anyone who has endured the rigors of care-taking also sees each precious day as a gift: never promised, but truly appreciated.

    I just passed my 14 month birthday from an allogenic transplant for AML-6. This week, I had yet another scare when my dentist noticed some suspicious areas on my tongue. A quick referral and 4 days of staring at my tongue in the make-up mirror later, the oral surgeon reports that it’s PROBABLY just mouth ulcers from biting my tongue in my sleep, which I have somehow begun to do at the ripe old age of 61. I get to go back in 3 weeks for a biopsy if it doesn’t go away.

    I hear and feel your pain when it comes to medical care post transplant…post the acute care phase where everyone is running around making sure all your systems are in order. When you start looking too good, they kinda lose interest in you. I’ve been told I’m the poster girl of their clinic, but there’s no glory in that as I continue to monitor my GVHD and deal with all the new issues that POP up.

    Besides fearing relapse, I am always GOOGLING some symptom to see if I am experiencing some new GHVD issue OR did I just overdo it on the tennis court and hurt my knee? It’s so easy to hashtag everything on my medical complaint list as GVHD related.

    I had a great experience at MUSC in Charleston. The team could not have been better and the hospital facility/clinic is top notch. I am trying to interface that experience with my local family practice and other physicians. So many physicians outside of the transplant circle seem to have limited understanding of the effects of transplant. For a while, I didn’t even bother with regular visits to my family practice doctor, since I was just focusing on staying ALIVE at that time. I mean, who cares if you have a small patch of squamous cell carcinoma on your arm when you might relapse and die anyway? Colonoscopy for slow-growing cancer when you’re checking out in a couple months? Mammogram for some calcifications when you’re blast count is climbing? I’m just sayin.’

    I laughed out loud when I read how your friend was going to throw something if she heard the words ‘new normal’ again! Indeed. There’s NOTHING normal about this life we lead! It’s hardly predictable at all. It’s a dark ride at the amusement park…we’re barrelling along in some little twisted path and suddenly some door bangs open and a new ISSUE drops down to scare the shit out of us. Hardly amusing at all.

    Status report: I’m down to 2 prophylactic antibiotics a day. I ditched the topical steroid for my mouth and have learned to live with its limitations. Most of my issues are mucous membrane related. Compared to so many, I feel lucky and blessed. I have resumed all physical activity and have great stamina. Today, I played tennis for 2 hours straight in 90 degree heat and humidity. I’m at the top of my 61-year-old game and alive to enjoy it.

    I believe that as survivors we have proven to ourselves the power of positive karma and energy…some would say prayer. We have awed many with our strength of will. When I visit the forums, as I often do to touch base with my kindred souls, I am always impressed with the positive attitudes reflected in their posts revealing so many significant medical issues.

    I have never given myself the leukemia excuse for not doing the things I choose to do. Leukemia chose the wrong person to mess with here! I ain’t goin’ down easy, if I’m goin’ down at all. I think I can say the same about you, Karen. “You’ve got your troubles, I’ve got mine…” and you seem to walk through adversity like Moses parting the Red Sea. When I got the news about my tongue this week, I thought about you…how you seemed to walk before me in so many ways.

    Keep posting, please. Unlike your medical team, there are many of us who have not lost interest in you or the plight we share.

    Yours in the fight,
    Sherry

    Thank you, Sherry! Your words are much appreciated.

    Day +1011: Words! Words! Words! I’m so sick of words!

    “I get words all day through;
    First from him, now from you!
    Is that all you blighters can do?”

    9/6/2013: The following email from a fellow bone marrow transplantee arrived on my iPad yesterday while Michael and I were on our way to Hopkins. I was in the midst of vocally [profanely] dreading the upcoming appointment. Hoping the message would improve my mental state, I paused mid-rant to read it aloud to Michael as he drove. Her words resonated with both of us. Talk about perfect timing! My friend kindly granted permission to repost here.

    You took the words right out of my mouth…

    “I’m just saying hi and hoping you are doing well. I am doing well and enjoying a period of blissful calm. It was sixteen months yesterday since BMT.

    “I’ve been reading your blog and saw your husband’s post last week and your recent post yesterday. Your husband’s post I’m sure mirrors the feelings of other husbands (mine too) and caregivers out there who have been there every step of the way with their loved one. Their loved one is doing ‘fine’ and everything is mostly ‘normal’ again, but there is always this undercurrent of issues to be dealt with at times, mostly physical but also mental. I sensed a great deal of frustration in both posts. That’s just my take on it. Because me and my husband have felt the same at times. Once we left the cocoon of constant monitoring and frequent visits to Hopkins, it was a little hard to cut the apron strings, but we eventually did it. We then had to transfer to our ‘local team’ for future issues that may come up. In my case, I am still being monitored by Hopkins because of the mixed chimerism. I found a local eye specialist (thanks to you), and am now asking around about a local dentist. The one I’ve had for the last fifteen years is in Parkville, and I really am so done with driving that far to see him. And his eyes sort of glazed over when I talked about GVHD of the mouth. I’m saying this after all the mileage we accumulated going back and forth to Hopkins. Go figure.

    “So, we are sort of pushed out of the nest with gentle prods and glowing words to fend for ourselves. Don’t get me wrong. I’m so grateful for the world class hospital, doctors, medicines, etc. that I have access to and to my wonderful donor daughter especially. But in my mind I believe that all transplant survivors are very unique patients. It is really not like any other transplant situation, even heart, kidney, liver, etc. It is much more complicated, even though other organ transplants can cause problems too long term. I think that the follow up care and consultation with BMT survivors is severely lacking. The big teaching hospitals like Hopkins or University of Maryland are in the business of saving people, in the business of research and clinical trials, and to a certain extent the follow up care of those patients. But the follow up of issues that may return maybe two, three, four or more years later is pitiful. You would think that this would be a priority for them to gain as much knowledge as possible from former patients as to quality of life. We have all filled out some survey forms and have been very open about what is happening to us on a daily basis, but that ship has sailed in many ways. They are on to their next BMT patient, to give them the chance at life too. And now we are reduced to feeling like specimens in a lab when we try to get an answer to a physical symptom or condition. And if I hear the term ‘new normal’ again from anyone, I swear I’m going to throw something. That’s a term that has crept too much into the doctor-speak lately. An issue may be new, but it certainly ain’t normal. Someone at some seminar must have told medical professionals to start using it to help quell patients’ anxieties about disturbing symptoms. It’s not working. Not with me, at least. LOSE THE TERM.

    “I’m on my soap box today a little bit. We just want to be taken seriously and given the respect of being treated well. And that includes a good conversational rapport coming from doctors, residents, interns, whatever, when they are examining you and talking about you, around you, but not to you. Hell, we’ve been through a lot. It’s the hardest thing we have EVER done in our lives. We want a gosh darn medal for heaven’s sake! Well, maybe not a medal, but a ‘job well done’ pat on the back. I’m crazy about my doctor at Hopkins and all the other medical professionals that helped me, but REALLY? I will see him again on Sept. 26, and will definitely quiz him about many things, especially the mixed chimerism.

    “I am now off of all medication. I took myself off the Dapsone almost three months ago. They didn’t know it then. And then THEY said to go off the Dapsone and the Valcyclovir at my last visit. I have since found out that those two medications were the sole reason for my problems with eating and tasting and anorexia. Also the low red cells. Since I have gone off of those meds, the red cells have come up to almost normal, I no longer feel anemic. And I can feel hungry, I can eat anything and I can taste everything. Hooray. I spent a lot of months of anxiety, frustration and sometimes depression worrying about the red cells and the eating issues. I began to feel like I was crazy, Why couldn’t I eat?? If only my doctor had said to me, these two meds may be the reason for that, but just hang in there a little longer, and these issues will probably resolve themselves when we take you off them. He had originally said I would be on them another couple of years!!

    “Thanks for listening to my rant. And I want you to know that I am always pulling for you. You’re coming up on three years. Wow. What a miracle. Blessings to you and to your ‘caregiver’ (husband). What would we do without them?”

    I couldn’t have said it better myself!

    Day +1010: Went to see my physician, Dr. Jones…

    “He took my trousers off, told me to cough
    Doctor says there ain’t nothin’ to discuss…

    All the time, such aggravation
    Gonna be my ruination

    Too much back pain
    Good gawd, drive me insane”

    Hint: No, I don’t have the ailment that’s in the song!

    9/5/2013: I saw my transplant doctor at Johns Hopkins today. I’ve fretted about the appointment all week, mentally rehearsing what I’ll say if he once again says my skin condition doesn’t look BMT related.

    My first surprise upon arrival is no blood draw. The tech checks my weight, temperature, blood pressure, and oxygen levels (all good) and escorts us to an exam room. Our next surprise is no waiting. Audra, the nurse practitioner, appears within a few minutes for the preliminary examination. She notes that the dimpling on my stomach was not there last December and the hyperpigmentation has increased. She asks the usual questions about symptoms and additionally asks if I’ve noticed any changes in motor skills. Michael notes I’ve had hand cramps that send my fingers in odd directions and I also stumble for no reason occasionally (I call it spontaneous dancing). I rate my back pain as a “2” but he ups it to a “3” based on the extent of my complaining. He knows me well after 29 years and factors in my high tolerance for pain.

    Dr. Jones arrives soon after and agrees that the abdominal tightness is new and observes there is also tightening of the skin on my lower legs. He tells me that I probably have chronic sclerodermoid GvHD although it is an atypical presentation (surprise, surprise). Reticent as always, I blurt, “Well, I wish you’d decided that nearly two years ago when it was a tiny spot!” He says it isn’t bad, to which I reply, “I don’t care what it is medically. It’s a quality of life issue and I want it treated.” He asks me how it affects me…. Big sigh… Let’s see…sitting, sleeping, wearing clothing….

    Philosophically, I like it that Hopkins is conservative about GvHD treatment. My primary reason for choosing Hopkins, besides proximity, is their post transplant Cytoxan protocol to avoid the steroids and immunosuppressants that seem to be so readily prescribed at many other transplant centers. Still, it’s terribly frustrating that it took this long, circuitous route through other doctors for them to consider the GvHD diagnosis at all.

    The good news is that this type of cutaneous GvHD is generally limited and doesn’t typically (I hate that word) affect other organs. The bad news is that treatment may or may not be successful, about a 50-50 chance. He says PUVA is not appropriate for chronic GvHD, only for acute (first 90 days post transplant). The preferred treatment is extracorporeal photopheresis. I’ll discuss that further when/if it happens. Dr. Jones wants my biopsy slides from University and wants me to see the Hopkins phototherapy dermatology specialist, Dr. Sweren. He also wants blood work for thyroid and gammaglobulins. If treatment is done, it will probably be twice weekly and may take a long time to see any results.

    I end our meeting complaining to the doctor about how often I hear the word “unusual” applied to me medically. Audra smiles sardonically, “Oh, there’s no danger of you ever being ordinary!”

    I’ll close for now. Stay tuned for an excellent guest post from a fellow traveller.

    Day +1009: Hey look me over, lend me an ear…

    9/4/2013: HAPPY BIRTHDAY, MARY LOU!!!

    Your immune system is partying within me, so it feels like my birthday, too. Thank you again for this most precious gift of life.
    .

    Dermatology

    It’s been more than a week since my case was presented at University of Maryland Dermatology Grand Rounds. Dr. Gaspari was in Scotland so unable to attend. Dr. Cowen from NIH wasn’t there either, although I learned later that Dr. Gaspari conferred with him via telephone.

    I’m ambivalent, even a bit disappointed with the overall experience. When I met with the multidisciplinary team at Johns Hopkins last year before my tongue and neck surgeries, I was already diagnosed. The purpose of the meeting was to decide the preferred treatment option(s), given my circumstances. Meeting with a group of about 10 physicians and students all at the same time generated dynamic discussions in which I felt like an active participant. I suppose I expected something similar for Grand Rounds. I thought it might be even more interesting because autoimmune disorders and/or GvHD are much more challenging to properly diagnose and treat, depending more on clinical analysis than on simple pathology results.

    For Grand Rounds, Michael and I were escorted to an exam room by the first year resident coordinating the session, Dr. Groleau, (part of the training process). She and I didn’t have a good rapport so I didn’t start in the best frame of mind. Over the next 45 minutes or so, about 20 doctors and students entered the room one or two at a time, revolving door style, to briefly examine and query me about my symptoms and history. It became rather repetitive: introductions, ask when symptoms began, look at my back, look at my stomach, look at the discolorations on my thighs, ask about aches and pains or itching. Some also examined my fingernails and asked about my dry eyes and mouth or if I suffered digestive issues. Each exam lasted only a few minutes. There was no time for us to ask questions. Michael and I quickly lost track of names and how many we saw.

    Although all were polite, it seemed that some were just going through the motions while others had obviously reviewed my history. One, Dr. Driscoll, took me to another room for a brief pelvic exam and noted there was scarring but no evidence of current inflammation. She was the most thorough and seemed the most interested. I think the pathologist who had analyzed my biopsies, Dr. Kao, was the only one who addressed me by name and took the time to ask how to pronounce it correctly. She was also very interested in seeing the areas where the samples were taken so she could compare them with what she’d seen on the microscopic level. She said she trained at “The Hutch” in Seattle. You may recall that was my favorite of the transplant facilities I visited before selecting Johns Hopkins close to home. Another doctor commented, “You’ve had quite a ride.” His tone indicated that he had some comprehension of all I’ve been through. I didn’t sense that with the others.

    Although I was pleased to be examined by so many specialists and to participate in the training of new doctors, I felt disappointingly detached from the entire process. I wish I could’ve attended the meeting to hear their discussions about my case after they’d seen me. Later, Michael commented that it was better than being on display in an auditorium full of people. Surprisingly, to me anyway, I’m not so sure. Although I prefer socializing one on one, perhaps I’m a performer at heart, playing best to an attentive full house. Would I do it again? Yes. Would I recommend the experience to others? Absolutely. But my experiences at NIH and Johns Hopkins were more entertaining.

    Dr. Groleau phoned the next day, summarizing the informal diagnosis and treatment recommendation, subject to review by Dr. Gaspari when he returns: sclerotic skin GvHD/phototherapy. My next appointment with Dr. Gaspari is September 18th.

    I emailed my transplant doctor at Johns Hopkins to let him know what was going on and to assure he had no contraindications to any proposed treatments. He responded immediately:

    “Everything after transplant to non-transplant specialists is GVHD, and unfortunately, biopsies are not specific. While this could certainly be chronic GVHD, as you might expect because the cells are everywhere, GVHD localized to one or two areas of skin would be rare. So, let’s have you come see us, as GVHD is a clinical diagnosis not a pathologic one. If we decide we want to see biopsy results, we actually will need biopsy not just records, but let’s see you first before making that call. When can you come?”

    I’m seeing him this Thursday, September 6th, and already plan to tell him I don’t care what label anyone wants to use – I just want it fixed. I’d like to try the phototherapy unless he comes up with a compelling reason not to. The treatment is the same whether the diagnosis is GvHD or some autoimmune condition, and I’m more comfortable with the idea of light therapy, even if it includes the drug psoralen, than with systemic steroids or immunosuppressants.

    The saga continues.

    Tag Lines

  • Day +959: My Life, Billy Joel (IDed by Robb & Susanne)
  • Day +999: The Stranger, Billy Joel (IDed by Mike & Susanne)
  • Day +1000: It’s Me Again Margaret, Ray Stevens (IDed by Susanne)
  • Day +1003: The Grand Illusion, Styx (IDed by Dana)
  • Day +1003: Sounds of Silence, Simon and Garfunkel (IDed by Dana & Leslie)
  • Congratulations to Susanne for three in a row!

    P.S. We had 24 people, including Michael and me, at the birthday party Saturday. It went very well. Thanks for the delicious contributions from all who attended and also a special thanks to Chris, our friend in Colorado who couldn’t attend but sent us a wonderful assortment of Nueske’s cheese and sausages.

    Day +1003: …Welcome to the grand illusion…

    “Come on in and see what’s happening…
    Pay the price, get your tickets for the show…”

    WARNING: This is a Michael Post.

    The place is work and the question is: “Is Karen ok?”
    Yes, she is fine – A checklist response.

    So that is the illusion: Fine. Ok. Normal. Neutrally pleasing words that translate into a qualified statement people don’t want to face. Hell, most days I don’t want to face, and I’m just the bystander on the sideline of her life. So, for a multiple cancer patient with continuing symptoms of graft versus host disease, she is fine because she is alive! What is cured? No relapse in five years – no treatment side effect(s) that are as life threatening as the disease – heck, no pressure there for the day to day living. No worries or fears that the morning sniffle or cramp in the night is a sign that “it” may be back. Is this crippling? – no, Karen ‘deals’ with it, finds the joys and finds the hope to keep going. However, life is certainly not fair.

    The stage is set. In the continuing evolution of Karen’s treatment; I’m often rudely awakened by how much is really a guess – yes, brilliant and well educated, well meaning – never the less still a guess – true; based on years of experience, but like all good human experience biased by a particular view or perspective. I see cancer as the most individualist disease; the body goes astray at the genetics level, and just because last 1,000 patients may have “responded” well to a treatment or drug – there are no guarantees. The person is sliced in functions of experience – blood, skin, eyes, organs (definitely differentiate there), bones, etc. – lots of specialized areas. But I don’t think quality of life is a deterministic equation of human subsystems. This is my obtuse statement that it is often hard to get the doctor to truly look at Karen as a whole person.

    The price – in emotions? Priceless! (Note: sarcasm) In hard currency? Frighteningly debilitating – we are extremely lucky, that through current work and military retirement we are doubly insured. I’m not advocating “national health insurance” – what I’m trying to do here is raise a little awareness. The singular, limited but major event in Karen’s treatment – the BMT, cost more than $500K. Put your own insurance deductible against that and realized that it was a very short term event in years of continuous treatment. What do people do without insurance? No golden future there.

    The show:

    “…Hello darkness, my old friend,
    I’ve come to talk with you again,
    Because a vision softly creeping,
    Left its seeds while I was sleeping,
    And the vision that was planted in my brain
    Still remains
    Within the sound of silence….”

    Yes – it is only a two song post. The information age provides the opportunity to share experiences both light and dark. Hopefully, Karen’s journey as reflected in this blog will help others in some little way with living their life. Technology is not inherently good or bad; however, the silence of a blog or website of a fellow traveler can bring on the greatest of fears. Sometimes that fear is realized, at other times it is a sign that someone is approaching “true” normal for awhile.

    1, 000 days slip by….. Karen is “fine”. Thank you for asking.

    Michael

    Day +1000: It’s me again, Margaret…

    8/26/2013: Good morning! It’s another unseasonably cool summer day, just the way I like it. August weather has been surprisingly nice this year, particularly after July’s heat wave. Picking up where I left off last night…

    Physiotherapy

    I forgot to mention how impressed the lymphedema therapists were with my neck scars. In their line of work, they see a wide variety of scars on patients who’ve had different combinations of surgery, chemotherapy, and radiation. They judged my scars as “beautiful” even compared to others who’ve had surgery only. I told Kathy about the ScarAway silicon strips I used after surgery on the recommendation of my local physiotherapist. Kathy passed the info along to another of her patients who started using them immediately and saw some improvement within a week. My scars have been feeling tighter lately, so I decided to abandon the gel my dermatologist recommended and go back to using the strips for a couple of months. The gel was expensive and sticky and didn’t seem to work as well.

    Heather and Kathy both commented that it would be better if they saw patients sooner post surgery, and I expressed my frustration that I hadn’t been referred to a lymphedema specialist until many months later. Right after my neck dissection, I was given a generic prescription that simply noted the surgeries I’d had. Choice of therapy was left to the physiotherapists, and choice of therapists was left to me. I knew about lymphedema therapy only because of my contacts with other patients online via forums and my research. It is not standard procedure after neck dissections, particularly if radiation has not been administered. Heather said she’d contact the Hopkins otolaryngology department and strongly recommend more explicit referrals for all neck dissection patients soon after surgery.

    Dental

    My 6-month check-up and cleaning on July 19th went well and wasn’t as painful as last time. Because I’d had a recent head and neck MRI, they opted to delay the currently due panoramic x-rays until next time. No new cavities showed up in my oral exam. A small filling on my lower front tooth keeps falling out. They decided to just keep an eye on it instead of replacing again. It isn’t readily visible. The hygienist and dentist both noted that I had stubborn stains that wouldn’t come completely clean. I suspect this is a sign that my enamel is eroding from my dry mouth. I return for my next check-up January 23rd.

    Ophthalmology/Optometry

    I have my medical eye exams and treatments at Wilmer but I prefer a small local shop for my glasses. I got three new pairs last month – progressives, computer glasses, and polarized prescription sunglasses. My optician, Devin, was an affable young man, very conscientious about the proper fit. He was concerned that my glasses not be too tight but snug enough for physical activity. I told him I thought they’d be okay unless they flew off if I got too wild on one of my video games. He said wryly, “What do you play – Candy Crush Saga?” I chided him for his stereotypical view and told him I’d been playing computer and video games since long before he was born. This generated a lively discussion on various types of gaming. By the time I left, he gave me his business card with his PS3 gamer tag hand written on the back.

    I’m happy with my new glasses. I don’t see a lot of difference in my Silhouette progressives – the prescription change was small – but my computer glasses and sunglasses were older and the change more dramatic.

    The Restasis has seemed even more irritating to my eyes lately so I returned to Dr. Prescott at the local Wilmer clinic on August 21st. My left punctal plug had fallen out. When she replaced it, she couldn’t get it to seat as deeply, and theorized that scar tissue might be forming in the duct. This isn’t necessarily a bad thing as it might serve as a natural plug. She said if the plug fell out again, she’d do a drainage test.

    A fellow transplantee from another facility had her ducts cauterised. The idea was totally creepy to me initially but then again, so was the concept of plugs, and they’ve helped tremendously. I inquired about the procedure and asked what the potential long-term downside might be. Dr. Prescott said the disadvantage is that it’s irreversible; if a patient ended up having too many tears, nothing could be done. We both agreed that probably wasn’t a big danger in my case. So I’m thinking about having this done. Thanks for the idea, Lori – the ability to share this kind of info with other patients via the internet is invaluable! We live in a wonderful age.

    Thanks to Kathy, another fellow transplantee, I also asked about steroid drops to help with the Restasis irritation. The doctor prescribed a tapering course of Lotemax drops, 3x daily for a week, 2x daily for a week, 1x daily for a week. Lotemax is a mild steroid, only about 1/8 as strong as Prednisone. She also prescribed Lotemax ointment to use at night until my next visit. I return for a follow-up October 16th.

    Hematology

    I saw my favorite hematologist on August 7th. We exchanged book and movie ideas. His cousin’s film, At Any Price, had only a limited run in theatres, so I preordered it on DVD. I’d just finished the audio book, Stiff by Mary Roach, and recommended it to him. A history of human cadaver research, it’s not for everyone, but Dr. B and I have similar tastes in reading.

    My blood work looks quite good:

    WBC 11.6 (ref 3.0-11.2)
    Granulocytes (~ANC): 4.5 (ref 1.4-9.0)
    Platelets: 412 (ref 130-382)
    RBC: 4.56 (ref 3.90-4.90)
    HGB (hemoglobin): 14.7 (ref 11.5-14.3)
    HCT (hematocrit): 44.1 (ref 34.2-42.2)
    Bilirubin: 0.6 (ref 0.0-1.2)
    Alkaline phosphatase, S: 85 (ref 25-150)
    AST: 21 (ref 0-40)
    ALT: 13 (ref 0-40)
    Potassium, serum: 5.5 (ref 3.5-5.2)
    LDH: 141 (ref 0-214)

    Dr. Bahrani noted that the patch on my back looks worse and said he’d be very interested in the results from my then upcoming first consultation with Dr. Gaspari. (More on that next.)

    Because my annual post transplant exam at Johns Hopkins is in December, I’m not scheduled with local hematology again until February 5th. I’m being weaned.

    At checkout, the receptionist complimented my hair and asked if I was going to keep it white. She was amazed when I pulled it off, and she realized it was a wig. She wants to get one for herself to wear on days she doesn’t feel like doing her hair.

    Dermatology

    Michael accompanied me to my initial consultation with Dr. Gaspari at University of Maryland August 15th. First, the resident, Dr. Halvorson, examined me and took a medical history while medical student, Terrence, observed. They both returned a short while later with Dr. Gaspari who examined me thoroughly all over and asked many questions. I was surprised at how hazy my memory had become on some of my history post transplant. I wasn’t very well prepared because I expected him to just look at the spot on my back. Michael was able to look up some of the info on our blog with his iPad during the exam. I emailed more detailed information later.

    Based on the pebbling of the skin on my abdomen that I thought was cellulite and the many discolorations on my skin that I thought were leftovers from conditioning chemo, Dr. G suspects sclerotic GvHD. He said he wanted punch biopsies from my abdomen and a different area on my back and then wanted me to return for my case to be presented at Grand Rounds for evaluation by a larger audience. He also wanted to invite Dr. Cowen, my dermatologist at the NIH GvHD study nearly two years ago. Dr. Cowen is a former student of Dr. Gaspari.

    Dr. G briefly described several possible treatments if his suspicions are correct:

  • PUVA: http://en.wikipedia.org/wiki/PUVA_therapy
  • UVB:http://www.ncbi.nlm.nih.gov/pubmed/21616558
  • Extracorporeal photopheresis (ECP): http://www.marrowmatters.com/Photopheresis.html
  • Dr. G ordered blood work to rule out Lupus and Sjögren’s syndrome. PUVA is contraindicated for Lupus.

    While Dr. Halvorson took photos and did my biopsies after Dr. G left, I asked about Grand Rounds. I wasn’t familiar with the term. He replied that cases are chosen because they’re interesting or unusual or both. Michael showed off my post surgery Bride of Frankenstein photos from last fall, and Terrence added, “Another condition is that the patient have a great personality!”

    Later, seeking more info about Grand Rounds on the internet, I found the following excerpt from an article Dr. Halvorson wrote his first year of residency:

    “The most interesting cases are presented weekly at our Grand Rounds conference where patients come from across Maryland, the United States, and occasionally the world for a comprehensive evaluation of their unique conditions. Each case is presented to the group by a first-year resident along with a differential diagnosis that is constructed with the help of our senior residents. A lively discussion follows, which involves our medical dermatologists, dermatopathologists, Mohs surgeons, and community physicians as we try to accurately diagnose and treat these complex cases.”

    Despite my high hopes of being medically boring this time, it seems that my case is once again interesting. I’d rather be a simple case or better yet, no case. Since I’m not, however, I’m pleased to have the opportunity to take part in education and to be seen by a variety of doctors. Tomorrow’s my big day. I’m both curious and hopeful. Michael overheard me talking to my niece about the difficulties of diagnosing T-cell disorders. She said, “I know – look at all those cases on House.” Michael muttered, “If Hugh Laurie shows up, we’re leaving!”

    Dr. Halvorson called with my biopsy results last Thursday. They are indeed suggestive of GvHD. He confirmed that I’ll be attending Grand Rounds on August 27th. My blood work was normal.

    Miscellany

    You’ve probably noticed that Michael and I include more details in our blog than would be generally interesting to the average reader. We do this for ourselves. This is our own journal as well as the public blog. We like going back and realizing how far we’ve come on this journey. As we learned with Dr. Gaspari, the blog is also a valuable resource for documenting my medical history along the way. Based solely on the information here, I was able to construct a fairly concise and accurate timeline that will help with my diagnosis.

    Happy Birthday, Michael!We have a busy week ahead. In addition to Grand Rounds, my cousins are visiting from Missouri, and we’re hosting our annual August/September family birthday bash this Saturday. My cousins from DC will be up for the party. We’re expecting a new niece sometime in the next couple of weeks so we’ll have one more family birthday to celebrate next year. We already have 10. Michael’s was last Friday, August 23rd. Doesn’t he look great?

    Day +999: Well, we all have a face that we hide away forever…

    “And we take them out and show ourselves
    When everyone has gone.
    Some are satin, some are steel,
    Some are silk and some are leather.
    They’re the faces of a stranger,
    But we love to try them on.”

    8/25/2013: I’ve meant to write an update for quite a while but, as usual, “procrastinate now” has been in effect. It’s hard to believe that summer is nearly over and in a couple of hours I’ll be 1000 days post bone marrow transplant! Wow.

    Physiotherapy

    I saw a lymphedema therapist at Johns Hopkins (Greenspring Station) on July 24th. My intention was a single consultation to verify the extent and treatability of my neck and head lymphedema and to ask them to recommend a therapist closer to home. However, I was so impressed with the therapists and other staff that I opted to continue my treatments there. The drive is 45 minutes each way but there’s a great creamery halfway where I treat myself to freshly churned ice cream with hot fudge after every PT session.

    You may recall my local physiotherapist, Suze, had no experience with lymphedema but read about it and massaged my neck each session last winter to move the fluids. I learned from my Hopkins therapist that general lymphedema therapy certification requires 140 hours intensive training (30 hours online plus ten 11-hour days classroom and hands on). Another 50 hours training is required for head and neck specialization.

    On my first visit, the general lymphedema specialist, Heather, examined me thoroughly, checked range of motion, and took many measurements. The goal is to teach the body new pathways to drain the lymph into arm pit and abdominal nodes through massage, sleeping on a wedge pillow, and wearing a custom-made compression mask at night. She taught me the first couple of techniques to use at home:

  • Breathe in, expanding stomach while pressing with one hand on left side, and breath out pressing the right side with the other.
  • Cross arms over chest and locate “wells” on both sides at base of neck/top of collar-bone. Use flattened fingers to pull skin down without sliding fingers across skin.
  • Repeat each 5 times daily.

    I was then scheduled for six visits with a head and neck lymphedema specialist, Kathy: July 30th and August 1st, 6th, 8th, 13th, and 22nd. On my first visit with Kathy, she gave me a temporary mask she’d made from ace bandage material and velcro to use until I get something more permanent. Each visit, Kathy reviewed earlier techniques, observed and corrected as she watched me do them, added a new technique, and massaged my head, face, and neck with her hands and with a Lympha Touch suction machine. She said the body would never be fully retrained and that I’d need to use the tools and methods she taught for the rest of my life. A brief summary of what to do daily:

  • First do the exercises Heather taught me, then massage the area around my arm pits to open pathways, working upwards and inwards to the base of my neck below my scars and then back down to my arm pits.
  • Use a single finger to gently massage the inside of each cheek, a path from back to front. Repeat 5 times.
  • From the top down and ears toward chin, use four flattened fingers to pull the skin, without sliding, in semicircles along pathways to the opening between scars at the base of my neck. Repeat each pathway 5 times. Pay extra attention to working the scars along the paths.
  • Using the same motions, follow pathways from the base of neck to arm pit on each side, repeating each full path 5 times.
  • Sleep on a wedge-shaped pillow to help drain fluid at night.
  • Wear a facial compression mask at night. These are custom-made from quilted, padded material measured to fit each person according to need.
  • In the morning, do a series of facial exercises while still wearing the mask – lifting eyebrows, making a “worry” face, “fish” face, jutting jaw, “surprise” oh! face, etc.
  • Fortunately, I received written instructions with diagrams. I’m easily confused with these types of tasks.

    I’ll buy the wedge pillow myself but the custom masks are ridiculously expensive, thousands of dollars, and insurance covers only a small part. However, my therapist and the mask distributor are working on alternatives to greatly reduce the cost for me. When I look at the masks, I can’t help but think how overpriced they are, another example of the insanely inflated prices of medical equipment and procedures. The excuse is “But they’re custom-made!” My reply is that I could get a custom-made Italian suit for that price, sewn from more expensive material and more complex pattern. Someone is making an enormous profit! My friend, Toby, sews quilted household and personal items and does custom orders. I think of the mask being rather like one of her custom appliance covers that sells for well under $100. Toby, you’re in the wrong business! With your skills, you could make a fortune.

    I’m waiting for Kathy to contact me with an appointment to be measured for my mask. Then it will take about two weeks for it to be constructed, after which I’ll return a couple of times to make sure it fits correctly.

    The midnight hour is fast approaching, and I have contractors coming early tomorrow to start work on a retaining wall in our front yard. I’ll write more tomorrow. Lots of catching up to do.

    Goodnight all!

    Day +959: I don’t need you to worry for me ’cause I’m alright…

    Karen 7/16/2013: Today, I had a regular 4 month follow-up with my surgeon, Dr. Gourin. She peered in my mouth and ears, poked and prodded my oral tongue, did the usual through-the-nose scope to view the base of my tongue, and said everything looks wonderful. I asked if the neck numbness under my chin is most likely permanent. She said it’s difficult to tell for the first year or longer if the nerves will heal and feeling return. I’ve contemplated plastic surgery to remove some of the bulk in hopes that it might feel more comfortable but I can’t summon the courage to go under the knife again yet. She assured me that it would be considered medical, not cosmetic, and therefore covered under insurance. For now, however, I opted for a referral to a lymphedema specialist at Hopkins instead to see if more physiotherapy might help, this time with someone more familiar with the procedure than my local physiotherapist. I need to call for an appointment. My next surgical follow-up is in four months, November 19th. Of course, there’s no shortage of medical appointments in the meantime – dental this Friday and dermatology and hematology next month.

    On a more fun note, Michael and I are in the midst of planning a long weekend at Lake Tahoe with my sister and brother-in-law for my 60th birthday in October. The four of us stayed at the Calneva Resort on the north end of the lake for my 50th and loved it. Sadly, the Calneva will be undergoing renovations this fall so we’ll have to stay elsewhere.

    Tag Lines

  • Day +929: Angel Eyes, ABBA (IDed incorrectly by Dana)
  • Day +930: I Hope You Dance, Lee Ann Womack (IDed by Nicole and Leslie)
  • Day +939: Thick Skin, Otem Rellik (IDed by Leslie)
  • Day +947: Firework, Katy Perry (IDed by Leslie)
  • Congratulations to Leslie for three in a row!

    Day +947: You just gotta ignite the light and let it shine…

    “Just own the night like the 4th of July

    “‘Cause baby you’re a firework
    Come on, show ‘em what you’re worth
    Make ‘em go, oh, oh, oh
    As you shoot across the sky

    “Baby, you’re a firework
    Come on, let your colors burst
    Make ‘em go, oh, oh, oh
    You’re gonna leave ‘em falling down

    “Boom, boom, boom
    Even brighter than the moon, moon, moon
    It’s always been inside of you, you, you
    And now it’s time to let it through.

    4th of July

    Happy 4th of July!

    7/4/2013: We just returned from a very enjoyable family cookout at my niece’s. Her husband and sons made the annual trek with Michael Sunday to buy fireworks. They really outdid themselves this year. Even the weather cooperated. Earlier, it was cloudy, hot, and muggy but a cooling breeze reduced the humidity and cleared the skies just in time for the spectacular display. Great job, boys!

    .

    Day +939: And I’m wondering why my skin’s thick like the bark on trees…

    “And I’m wondering why my skin’s so thick…”

    6/26/2013: I had a follow-up with my dermatologist today. The lichen sclerosus/cutaneous GvHD on my back doesn’t seem to be getting any better; in fact, I think it’s continuing to spread. I like my doctor but we’re running out of ideas for what else to try. She suggested stopping the Protopic (tacrolimus) and switching from clobetasol cream to spray because it is more penetrating. Hoping not to offend, I asked if it might be helpful for me to see someone who specializes in autoimmune diseases for another opinion. Much to my relief and to her credit, she enthusiastically agreed it was a good idea. I told her I’d unsuccessfully searched the internet for a cutaneous GvHD specialist and asked if she could recommend anyone. “Yes!” She replied. “Dr. Gaspari at University of Maryland. He’s brilliant. He lights up when he hears T-cells mentioned.” She said he was her mentor and has done loads of research in addition to years of clinical experience. I asked about specific experience with GvHD and she said he often was called to the transplant ward to determine whether skin conditions were allergic reactions or graft versus host disease.

    As soon as I got home, I Yahooed Dr. Gaspari (I don’t Google) and learned he is chief of dermatology at the University of Maryland Medical Center. More interestingly, I discovered he is somewhat of a celebrity due to diagnosing the mysterious Treeman in Indonesia. My immediate thought was, “At least this guy is not going to think I’m unusual. Finally, I may get to be a boring patient.”

    My consultation is scheduled for August 15, the first available new patient appointment.

    I was all set to post this update but neither Michael nor I could think of an appropriate tagline. I tried searching for lyrics on the internet with key words like trees, skin, changes, opinions, new beginnings, or even songs about medical conditions but nothing seemed quite right. Imagine my delight when I typed the words “thick skin” in iTunes and was rewarded with the perfect song, with regard to both my sclerotic (literally thick) skin and to Dr. Gaspari’s claim to fame! I don’t expect anyone to guess this one without looking it up. Hint: The artist is a white rapper from Colorado and the song from his 2008 album.

    p.s. I also got a new gel for my neck dissection scars today. They’ve been feeling very tight despite my daily stretches.

    Oh, on an unrelated note, I got my ears repierced last week. The holes had closed from disuse after my surgeries. I rarely wear jewelry, not even a wedding band, but I do have a fondness for earrings. When I remove the piercing studs in six weeks, I’ll enjoy Michael’s treat of beautiful new tricolor gold hoops, my favorite!

    Day +930: I hope you never fear those mountains in the distance…

    “Never settle for the path of least resistance
    Livin’ might mean takin’ chances but they’re worth takin’,
    Lovin’ might be a mistake but it’s worth makin’,
    Don’t let some hell bent heart leave you bitter,
    When you come close to sellin’ out reconsider,
    Give the heavens above more than just a passing glance,
    And when you get the choice to sit it out or dance.
    I hope you dance….I hope you dance.”

    6/17/2013: We’ve gotten to know many fellow travelers on our journey these past few years. Each of their setbacks and victories feels oddly personal, and it’s disquieting when someone drops off the map for a time. Thus, I felt so deeply touched and uplifted when I received the following email last week that I asked the sender for permission to reprint it here anonymously. She kindly acquiesced.

    Words from a Fellow Traveler

    It’s been a while since I’ve updated, and that’s really a good thing. I have been feeling great the past six months. It is now 402 days since the transplant — over a year! This time last year (2012) I wasn’t even out of the hospital yet and feeling physically pretty bad. I feel so grateful and truly blessed. The love, support and prayers from all of you have gotten me (us) through this. And every day I thank God for my daughter/donor. I still have some issues with GVHD which causes dry eyes, severe dry mouth and occasional breakout rashes. All of that is expected and treatable. Eating is really a challenge, because my taste buds don’t work well, and I seem to have lost the ability to feel hungry. I literally have to remind myself to eat, because I need the nutrition. I feel plenty thirsty all the time, but not hungry. I am constantly popping sour lemon drops in my mouth, because they taste good and keep the saliva flowing. I think I have become an addict. All and all, life is GOOD.

    A couple weeks ago I had my one-year checkup. A lot of blood was drawn (15 vials), bone marrow biopsy (ouch), and the first five childhood immunization shots were given. The nurse said I would feel “punky” for a couple days after the shots. I don’t know what punky means, but I definitely felt out of sorts and sore for a couple days. I feel sorry for little babies who get all those shots at once. Next month I will get more immunizations. Even though I had a lot of those childhood diseases, I have to be immunized again. And these days there are more shots than ever before.

    The day of the checkup, my husband and I went up to the fifth floor to the transplant unit that had been my home for two months. That was our first time back. As we slowly walked the hallway and discreetly looked into the patients’ rooms, we marveled at how far I have come. Everything looked oddly smaller than I remember. When I used to do my laps in that circular hallway, lugging my giant IV pole, it seemed wider and longer. We walked quietly and said a prayer for all the patients lying in their beds, just starting on their journey. We saw familiar faces and hugs were given out. The staff recognized my husband before they recognized me. I looked very different last year, as you can imagine. They were grateful we came for a visit. They see patients at their sickest and don’t always see them later on. It was in a way therapeutic for us, and everyone said I looked great. As we left the unit I kept thinking, did I really do this?? We saw my doctor also that day, and he basically gave us a pep talk and told me to keep up the good work. He smiled a lot and gave us hugs. Everyone at Hopkins has been super.

    It was a long tense ten days waiting for the results of all those tests. Yesterday my doctor e-mailed the results. After all that waiting I was suddenly afraid to look myself, so my husband read the e-mail to me. The first sentence – in capital letters was – NO LEUKEMIA. It took us a few minutes to gather our composure enough to read the rest. We were so relieved. Everything looks very stable. I am still a little anemic, meaning the red blood cells are on the low side. The doctor feels that this will eventually work itself out. And I have iron overload, which is pretty much a common occurrence in transplant patients because of having to receive so many blood transfusions over a period of several weeks at the beginning. They will start to correct this at the two-year mark by either medication or literally having me “give blood” on a regular basis for a while. That blood will have to be thrown away and not given to anyone else.

    Fatigue is still a problem at times for me because of the anemia, but my energy level has increased a lot. I am doing just about anything I want, but I pace myself. I have no restrictions now, except common sense ones like: STAY OUT OF THE SUN; don’t be around sick people; wash your hands and use hand sanitizer a lot; no salad bars or buffets, etc. I only take two pills a day now, a wide spectrum antibiotic and a pill to keep me from getting shingles. The doctor said I’ll be on them at least a couple more years. A couple more years? It’s nice to be talking about a couple more years — and beyond.

    My hair has completely grown back — gray of course, and thick — but it’s not MY hair. It’s chemo fried, coarse feeling and sticks straight up. I can’t do anything with it. I’ve used all kinds of products to try and tame it, but to no avail. I expected the gray hair, but not THIS. My daughter says I should just go with the flow, use a lot of gel and create a “spiked” look. I’m sorry, but that’s just not me or at least the me I’ve come to know all these years. So, while I try to come to terms with this, I still wear a wig and try to figure out where to go from here. I think a trip to my hair stylist is in order soon. It’s been a long time.

    I’ve always said that this whole process has been difficult physically. But I think mentally it’s just as hard, maybe harder. To keep your mind focused constantly like a laser beam on getting past all the real hard stuff, and to concentrate on getting well every minute of every day is daunting. And when things get too tough mentally, my family is there to help chase those dark thoughts and fears away. Meanwhile, summer art classes are underway again, and I’ve got two paintings going at the same time.

    Remember, enjoy life and don’t sweat the small stuff. Most things in life are small stuff. Take personal time for yourselves doing what you love. Everyone has heard those old sayings over and over, but they are all so true. And the truest one of all — when you’ve got your health, you’ve got everything.

    Day +929: Don’t look too deep into those angel eyes…

    6/16/13: I saw the new ophthalmologist, Dr. Prescott, last Monday (June 10) at the Wilmer clinic closer to home. I spent the hour’s wait looking at new frames but couldn’t find any I liked better than my old Silhouettes. The personable new doctor has fantastic credentials and spoke very highly (“She’s brilliant!”) of my previous ophthalmologist, Dr. Akpek. The GvHD is apparently fairly stable, and I’m to continue my current regimen, adding up to two more doses of Restasis daily, if possible. Dr. Akpek has urged me all along to use Restasis more often but it’s extremely irritating to my eyes. I’ve done better the past few months, twice daily instead of just once before bedtime. Dr. Prescott suggested refrigerating the drops to decrease the burning sensation. The punctal plugs are still in my lower ducts and partly alleviating the dryness. My vision is clearer some days than others. I’m scheduled to return for followup in four months, October 16. I like the new doctor and the convenience of the local clinic but miss all the eager young residents and students and the opportunities to participate in research.

    Tag Lines

  • Day +912: Destroyer, The Kinks
  • Day +919: I Remember, The Eurythmics (IDed incorrectly by Robb)
  • Day +919: Well there’s a colour picture in my mind…

    “…of all the places that I’ve left behind.”

    6/6/2013: Just a quick note to let you know I finished sorting and updating the photo gallery.

    Day +912: Doctor, doctor, help me please, I know you’ll understand…

    image “There’s a time device inside of me, I’m a self-destructin’ man
    There’s a red, under my bed
    And there’s a little green man in my head

    “And he said, “You’re not goin’ crazy
    You’re just a bit sad
    ‘Cause there’s a man in ya
    Knawin’ ya, tearin’ ya into two”

    “Silly boy, you self-destroyer
    Paranoia, the destroyer
    Self-destroyer, wreck your health
    Destroy your friends, destroy yourself
    The time device of self-destruction
    Light the fuse and start eruption, yeah

    “Yeah, it goes like this, here it goes
    Paranoia, the destroyer
    Here’s to paranoia
    Paranoia, the destroyer”

    5/30/2013: I’m in the midst of moving the blog to a new server and reorganizing my photo albums. The new gallery plugin is a lot more flexible than the old. I’m not done yet but didn’t want to let another month go by without an update. As some of you requested, you’ll now be able to comment on, like, and share photos as well as posts. It’s probably best to put off viewing the gallery for a week or so until I’ve finished the uploading, sorting, and captioning.

    Otolaryngology

    The ache in my left ear persisted for several weeks after I saw my surgeon in mid-April, so she scheduled me for an MRI on May 8. Happily, a member of her staff called me two days later with an “all clear.” The aching finally stopped about 10 days later. Given the timing, about six to seven months post surgery, I’m guessing my nerves are reknitting. I’ve noticed some twinges and tightening on my neck scars, as well, and an occasional stabbing pain underneath my chin. Truthfully, Michael and I spent a month or more of paranoia because the ear pain was so similar to what I had last year that was ultimately diagnosed as cancer. We’re relieved that Dr. G ordered the test. I received a copy of the more detailed written report last week that noted my sinus inflammation is slightly worse than on February 8 but everything else was basically the same, i.e. no evidence of disease.

    Dermatology

    My biopsy site is completely healed but the GvHD/lichen sclerosus on my back is about the same. It begins to improve with the steroid (clobetasol) and tacrolimus creams but then worsens again. The area seems to be gradually growing larger and is somewhat sore and itchy. To prevent permanent damage from the steroid, I’ve been instructed to use it two weeks on/two weeks off. I saw the dermatology PA on May 23 and will see the doctor on June 26 for another follow-up. Apparently, the condition is not likely to be cured but instead controlled in hopes of preventing/slowing further progression. I think I’ll try to get a second opinion if it doesn’t improve soon. It isn’t miserable but is rather annoying and I do worry about it progressing.

    Miscellany

    In general, all is well. We had some beautiful (to me) cool spring weather but it has turned hot again this week. My family gathered here for an enjoyable Mother’s Day on May 12, an annual tradition. Michael’s family was on vacation so only 10 attended, including us. The photo is of my mother and me at the party.

    It’s hard to believe a year has passed since I met my donor (thank you again, Mary Lou!) and 2-1/2 years since my bone marrow transplant! Life is indeed good.

    Tag Lines

  • Day +846: Snow, Bing Crosby, Danny Kaye, et al, in White Christmas (IDed by Cathy)
  • Day +868: 59th Street Bridge Song, Simon and Garfunkel (IDed by Guy)

    p.s. We saw Iron Man 3 and Star Trek Into Darkness and loved both!

  • Day +868: Got no deeds to do, no promises to keep…

    “I’m dappled and drowsy and ready to sleep
    Let the morningtime drop all its petals on me…
    Life, I love you, all is groovy.”


    Spring!

    4/16/2013: Typical Maryland spring, i.e., no telling what weather to expect one day to the next. Not long after our surprise snow, we had days of temperatures climbing to 90 degrees F, but this past week has been beautifully spring-like in the 60s and 70s. Not seeing many April showers though.

    I’m feeling great. My cold finally went away after about three weeks and the lingering fatigue another week later. I’ve had a bunch of medical appointments since I last posted – here’s an update.

    Dermatology 3/27/13

    The occlusive opsite bandage has helped a lot with both pain and healing on my biopsy site. Dr. E said the spot was actually coming along nicely, to which I replied, “After 10 weeks it should be completely gone!” I had to laugh when she responded, “Ah, but you’re a special case – GvHD is a scarring process in itself,” first, because she has no idea how many times I’ve been a “special case” in the past few years and second, because she finally acknowledged that I probably do have cutaneous GvHD.

    We both agreed that a punch biopsy would serve no useful purpose at this time. The diagnosis of either lichen sclerosus or gvhd call for the same treatment plan – topical steroids and tacrolimus. The diagnosis for GvHD is rarely unequivocal, even with a biopsy. Based on the location and timing, Michael and I find it highly likely in this case. Remember, this is not necessarily bad – the desired graft versus leukemia effect goes hand in hand with graft versus host.

    I’m to continue using tacrolimus daily, even on the biopsy spot, plus alternating the Clobetasol steroid two weeks on/two weeks off. She replaced neosporin with Atrapro gel on the biopsy and said to change the bandage twice daily until it healed. She recommended using DHS lotion for general dryness but my pharmacy said it has been discontinued; I’ve been using Hydrocerin instead.

    Dr. E also checked my face and said it looks good. The seborrheic dermatitis comes and goes. Laughably, she started to examine my scalp, not realizing I had on a wig. When she touched the hair and realized it was synthetic, she exclaimed, “That’s a great hairpiece!”

    My biopsy site finally healed enough to quit using bandages two weeks later. My next dermatology appointment is May 29.

    My seborrheic dermatitis has flared up again on my face the past couple of days. I alternate ketoconazole and Promiseb creams for treatment.

    Hematology 4/3/13

    When I saw Dr. B on April 3, I was nearly over the respiratory infection. My lungs sounded clear again. Dr. B examined my neck and said he couldn’t feel any lymph nodes. I laughed and replied, “That’s because they’re gone!” Of course they aren’t all gone. I like it that he gets my sense of humor, unlike some of my other doctors. He tested my immunoglobulin levels in addition to the usual blood work. Low levels could account for the frequent infections. If levels were extremely low and infections serious, IVIG treatments could be done. As it turned out, my levels are only slightly low, not enough to warrant IVIG and associated side effects, and not something to worry about. In general, my blood counts are very good:

    WBC 9.9 (ref 3.0-11.2)
    Granulocytes (~ANC): 5.3 (ref 1.4-9.0)
    Platelets: 454 (ref 130-382)
    RBC: 4.59 (ref 3.90-4.90)
    HGB (hemoglobin): 14.0 (ref 11.5-14.3)
    HCT (hematocrit): 44.3 (ref 34.2-42.2)
    Bilirubin: 0.4 (ref 0.0-1.2)
    Alkaline phosphatase, S: 97 (ref 25-150)
    AST: 19 (ref 0-40)
    ALT: 17 (ref 0-40)
    Potassium, serum: 4.5 (ref 3.5-5.2)
    LDH: 134 (ref 0-214)
    Immunoglobulin G, Qn, Serum 1286 mg/dL (ref 700.-1600.)
    Immunoglobulin A, Qn, Serum 84 mg/dL (ref 91-414)
    Immunoglobulin M, Qn, Serum 39 mg/dL (ref 40-230)
    Immunoglobulin E, Qn, Serum 63 mg/dL (ref 0-100)

    All in all, Dr. B says I’m looking good and doing well. My next routine followup is August 7.

    Mammography 4/8/13

    Mammograms are never pleasant but the technicians are usually exceptionally nice and manage to distract with idle conversation. Not this time! The tech was very mechanical and abrupt. A small adjustment in positioning can also make a big difference in discomfort. Some of the techs just seem to have a knack for minimizing trauma. Unfortunately, this one did not. Pinch! Flinch! Silent ouch! However, it was over very quickly and the results came back fine: “There are scattered fibroglandular densities. No suspicious masses, calcifications or other abnormalities are seen. There is no mammographic evidence of malignancy.” I return in a year.

    Otolaryngology 4/16/2013

    The automated check-in kiosks were down, and the old inner waiting room was closed so the outer area was very crowded. My appointment was for 11:15, and I finally saw my surgeon at 12:25. The nurse had numbed my right nostril in preparation for the scope. Too bad I forgot that I have a spur on that side and should’ve told her to numb the other side. I had to wait another 15 minutes for Dr. G to return after she numbed the left. Fortunately, I had no place else I needed to be and I had my iPad for entertainment and a comfortable seat while I waited.

    The oral exam and through-the-nose scope exams went well – no evidence of any problem. My nose was a little red inside, probably a leftover from my last cold. I told her I’ve been getting slight earaches in my left ear lately but it could be from the congestion. She said if it persists to call her, and she’ll schedule another MRI.

    I also mentioned that my neck under my chin is still numb and feels very bulky. She said I should consult a plastic surgeon and gave me the card of one of her colleagues.

    I ran into my speech pathologist in the hallway, and she said I look and sound great. I told her I’m still doing my tongue stretches. My voice becomes slurred if I’m too tired or too dry.

    I’ll return for my next routine otolaryngology checkup in three months, July 16.

    Tag Lines

    I’m going to give you more time since I got no responses on the last one! A hint for the current one – it’s our Oreo cat’s (Dory Alexander) theme song on our MausCats.com website :-).

    Day +846: Snow, snow, snow, snow, snow…

    Snow!

    “It won’t be long before we’ll all be there with snow
    Snow, snow, I want to wash my hands, my face and hair with snow
    Snow, I long to clear a path and lift a spade of snow
    Snow, oh, to see a great big man entirely made of snow, snow”

    3/25/13: We sleep in a dark, windowless room in the basement, our own quiet little comfort cave – cool in the summer, warm in the winter – a habit we acquired while living in Alaska. This morning, I was awakened with what I thought was Michael’s routine goodbye kiss and mumbled the usual, “Love you, be careful.” Imagine my delight when he replied, “I’m not going anywhere. We have 5 inches of snow!” I ran upstairs and did a happy dance for the unexpected and amazingly beautiful wonderland our woods had become overnight. Click the thumbnail above for the larger photo (sorry it’s blurry and really doesn’t come close to the magnificence of the reality).

    I probably won’t do another blog update until after my next string of seemingly never ending medical appointments: dermatology on 3/27, hematology on 4/3, mammography on 4/8, and otolaryngology on 4/16. But here’s a quick synopsis.

    After 10 weeks, the biopsy site on my back still has not healed. It’s not even as good as it was a couple of weeks ago, although it’s better than before. The opsite bandages really help with the pain.

    After nearly two weeks, my cold is still with me and has moved into my head in addition to the initial chest congestion. I ran into Dr. B in the hospital hallway after visiting my mom last week. He said I sounded terrible and upon listening to the raspy wheezing in my lungs, he called in prescriptions for a chest x-ray, avelox antibiotic, and albuterol sulfate inhaler. The chance meeting was fortuitous; I’d just called his office to try to get an appointment but he was booked solid. They were trying to work me in. Thankfully, the chest x-ray was clear. I’m coughing a lot and still very tired despite getting more sleep but otherwise am not feeling bad.

    Tag Lines

  • Day +829: It Gets Better, Fun.
  • Day +833: Listening to You / See Me, Feel Me from Tommy by The Who (IDed partly by Chris who correctly named the artists and album – and yes, our cat Tommy is named after the song lyrics)
  • Day +833 bonus question: performer Gilda Radner and show Saturday Night Live (correctly IDed by Sherry and Michael)
  • Day +833: See me, feel me, touch me, heal me…

    3/12/13: Today is the first day since I had my skin biopsy done on January 16 that the spot isn’t excruciatingly painful when the dressing is changed. It’s still very sore but I’m able to touch the wound and feel that it’s shallower. Michael and my dermatologist have both been telling me the spot is slowly healing but today was the first time in eight weeks that I could notice an improvement myself! I’m so glad we thought of using the opsite bandages. The entire area is also better after using the stronger steroid cream (clobetasol) for two weeks, although I can’t use it on the biopsy site or under the bandage.

    The other, less happy, milestone today is coming down with my third cold since Christmas, this time starting in my chest and throat. In the words of Roseanne Roseannadanna, “It’s always something….” (Bonus points if you can identify the actress and show. Hint – watch this: Columbia School of Journalism Commencement Speech.)

    Day +829: Like starlight crashing through the room, we’ll lose our feathers…

    “Yes, I know it hurts at first but it gets better…”

    3/8/13: I’m a procrastinator by nature, especially when it comes to writing. One of my excuses to myself for delaying blog updates goes something like this: “I have another medical appointment soon – might as well wait to see what happens with it and write about everything at once.” I had quite a few doctors’ appointments last month and thus managed to procrastinate a full six weeks between updates. (Make that seven – it’s been another week since I began writing this.) I’ll caution in advance that this is likely a long, boring post, an uncreative historical update for the record. Of course, in cancer and bone marrow transplant recovery circles, boring is good! In general, when you don’t hear from us here, no news is good news.

    Respiratory

    The day after I wrote my last blog entry, I awakened with a sore throat and sniffles, disappointingly, my second cold since Christmas. Fortunately, it ran its course in about 10 days without medical intervention, basically a snotty inconvenience.

    Dermatology

    I was supposed to follow-up and get biopsy results on Feb. 6 but my biopsy site was extremely painful and healing slowly so I moved the appointment up a week. The PA, Todd, said my diagnosis came back as lichen sclerosus, and he prescribed the topical steroid, clobetasol, to be used after the biopsy site healed. He said the site didn’t look infected and was healing, albeit slowly, and scheduled me for a follow-up in 4 weeks. As I was leaving, I remembered to ask for a copy of the report.

    Imagine my dismay when I read the lab report later and discovered the lab had ruled out cancer, Graves disease, and lichen planus (eczema) but no mention of any evaluation of GvHD, my primary reason for requesting the biopsy in the first place. I left a voice mail with my dermatologist and received a call back from an assistant who said the doctor would discuss my results further at my next office visit. I told her I’d already been waiting 15 months for someone to address my concerns while I watched the small dry patch grow into a larger sore, scaly patch and I wasn’t ready to wait another month. “We can do this the hard way and I can go to another doctor and have them request my slides to send to their lab for further diagnosis, or we can take the easier route of my current doctor calling the current lab and asking them to check for GvHD.” The assistant became flustered and said she’d speak with my doctor again. Dr. E called me the next day and said the lab was sending my slides to Cornell for evaluation for GvHD. She phoned me with the results the following week, saying I don’t have GvHD and they still believe it is lichen sclerosus (LS). I had my doubts but didn’t argue this time because the treatment is the same for LS and cutaneous GvHD – topical steroids.

    In the weeks that followed, my biopsy site continued to heal [literally] painfully slowly and I developed new raw spots from the paper tape on the dressing. I quit covering the spot with the bandage. The lack of protection made it even more painful despite frequent applications of Neosporin antibiotic/pain killing ointment. I saw Todd again on Feb. 27. He said the site is still healing and does not show any signs of infection but he noticed a couple of new lesions spreading from the original scaly area. I expressed my doubts about the diagnosis since GvHD diagnoses are rarely unequivocal. Also, I read the latest lab report while I was still in the office this time and it did not rule out GvHD – instead it said that a punch biopsy would be needed if further evaluation was desired. Todd wanted to do the punch biopsy but I declined for the time being – the treatment is the same regardless, and I don’t want to introduce any new wounds before the current one heals completely. Because of the location in the middle of my back, the sore spot is already negatively affecting nearly every aspect of my life. I asked about adding topical tacrolimus to the treatment since I’d read it’s sometimes beneficial in treating either LS or GvHD. Todd decided I should apply the clobetasol twice daily for two weeks and then switch to the tacrolimus (Protopic) twice daily for another two weeks, carefully avoiding the biopsy site in both cases. He also prescribed topical lidocaine for the pain and recommended taking Tylenol or other general analgesic.

    After another frustratingly painful couple of days and nights, Michael and I came up with a new idea. I recalled that I’d had the same adhesive issues with the covering for my hickman catheter two years ago and finally found I was able to use an opsite dressing without too much skin irritation. Luckily, we still had a few of the 4″x4″ patches left over, the perfect size for my sore back. We tried it last night and I got immediate relief. The thin, transparent covering is almost like a second skin. The area is still tender but no longer raw as long as I keep it covered. I found the same product on Amazon (they really do have everything) and ordered a bunch more.

    Hopefully, the wound will be completely healed by my next dermatology visit on March 27. I’d like to get the punch biopsy for a more definitive diagnosis on the GvHD. Todd said the punch biopsy should heal faster because it will be a sutured incision instead of an open “scoop.” I hope so!

    Dental

    I returned to my dentist for three fillings on February 6. Despite my extreme apprehension beforehand, the visit wasn’t bad. I even managed to let him do all the fillings without anesthetic! I return July 19 for my routine cleaning and check-up.

    Speech

    My follow-up with the Hopkins speech pathologist on Feb. 7 was uneventful. Heather was pleased with my progress. My speech is nearly normal, probably as good as it’s going to get, and my eating issues are minimal. She advised me to continue with the tongue exercises but does not need to see me again.

    Otolaryngology

    On Feb. 8, I had an MRI of my head and neck with and without contrast, followed by a consultation with my surgeon. Dr. G used the through-the-nose scope to examine the base of my tongue and did a thorough oral exam. She said she wished she’d made the neck incisions a little further back for cosmetic reasons – thought they were too visible looking at me face to face – but was very pleased with everything medically. The MRI was clean, no evidence of remaining or recurring cancer. She scheduled another follow-up for April 16.

    Gynecology

    I saw a new gynecologist at Johns Hopkins Bayview site for my routine exam and PAP smear on Feb. 12. As noted at NIH in Oct. 2011, I have strictures and scarring, presumably from GvHD but no current inflammation. My PAP came back with, “A few (rare) atypical cells seen, all other cells normal,” but the doctor was not concerned. She advised that I be sure to get another check-up and PAP in one year. My HPV test came back negative. I have a mammogram scheduled for April 8.

    Ophthalmology

    I saw my ophthalmologist at the Johns Hopkins Wilmer clinic on Feb. 21. I began by donating a vial of blood for a research study on serum tears.

    The resident stained my eyes ghoulish green and took a closer look. The dry, damaged areas pick up the dye. He told Dr. Akpek I had some staining. She spoke as she repeated his examination, “I’m not seeing the staining…oh, here it is laterally on the right side. That’s very unusual.” I laughed and told her I’d heard those words way too many times. Medically, I’m an outlier.

    My vision was better, 20/20 in my right eye and 20/30 in my left (with glasses). The punctal plugs in my lower tear ducts helped a lot but my eyes were still dry so I agreed to plugs in my upper tear ducts, as well. The insertion was more painful than the prior set and my eyes continued to feel extremely itchy and irritated, even swelling at times, for the next two weeks. I wasn’t scheduled to return until my annual check-up but returned yesterday to get the top plugs removed. Dr. Akpek said my eyes actually looked much better, and she didn’t want to take the plugs out. I replied that they probably looked less dry because I’ve been using so many drops and washes to try to ease the intense itching. She agreed to the removal if I would continue using extra eye drops. I was much relieved that the itching stopped as soon as the plugs were out. She also reinserted the lower plug in my left eye that must have fallen out when I was rubbing my eyes the past two weeks.

    She reiterated that GvHD is progressive and can cause blindness, and urged me to use the Restasis as often as I can tolerate, up to four times a day. Thus far, I’ve used it only once at night because of the burning, blurring, and light sensitivity but I’m trying to build up my tolerance to an additional dose in the morning.

    I’m to return for a check-up in three months. Wilmer has a clinic in Bel Air now, much closer to home. At my request, Dr. Akpek recommended someone, Dr. Prescott, I can see there for the follow-up on June 7. If I’m not satisfied, I can always return to East Baltimore.

    Physiotherapy

    I was discharged from physiotherapy on February 25. I wasn’t able to do many of my exercises the final couple of weeks because of the sore biopsy spot on my back but my range of motion and strength are all fairly good. I’m to continue some of my exercises, especially the neck stretches, at home. The numbness and fibrosis under my chin are probably permanent but hopefully won’t get any worse. I’m going to miss those neck massages!

    Hematology

    I finally got the full printed reports from my Dec. 6 bone marrow biopsy. My NP had already told me that I’m 100% donor with no evidence of disease but it’s nice to have the reports for my records. The only new information I noticed was, “A small benign lymphoid aggregate is present.” Apparently it’s nothing concerning, but I’ll ask Dr. Bahrani when I see him for my routine check-up on April 1st.

    Tag Lines

    Day +770: Heart Attack, Olivia Newton John (IDed by Guy)
    Day +778: Everybody Hurts, REM (IDed by Chris and Leslie)

    p.s. Spring’s around the corner. I am disappointed we didn’t see any of the big snows that were threatened/promised this year – typical Maryland!

    Day +778: Well, everybody hurts sometimes…

    “Everybody cries. And everybody hurts sometimes.
    And everybody hurts sometimes. So, hold on, hold on.”

    1/16/13: Although I love winter and I love rain, today I’ll join others complaining about the weather. No question about it, forty-something (Fahrenheit) temperatures and precipitation are a bad mix. I wish it were colder and snowing or warmer and thunder-storming. This in-between stuff is cold, wet, and miserable, especially on a day when I have a lot of running around to do.

    I started my day with my annual dermatology checkup. The dry spot in the middle of my back has grown larger, drier, and sorer over the past year. I’ve tried all sorts of creams and lotions including, among others, hydrocortisone, ketoconazole, and neosporin. It feels like a bad sunburn, and although small, the location is particularly uncomfortable for sitting, moving, sleeping, clothing – just about everything. It’s been looked at by all of my doctors but never diagnosed. “Oh, is that all – it doesn’t look like much of anything.” Last month, I expected my transplant team to pronounce it GvHD and at least prescribe a stronger steroid cream. Instead, I got their usual, “Hmmm… Probably nothing to do with your transplant. Doesn’t look like GvHD. Might be eczema, see your dermatologist.” At least they acknowledged seeing something there this time.

    Despite what they say, I’ve done a lot of research on my own and still believe it’s most likely GvHD. Cutaneous GvHD does sometimes have an eczema like presentation. One potentially good bit of information I gleaned from my reading is that both eczema and cutaneous GvHD often respond well to tacrolimus. Interestingly, both conditions relate to T-cell activity. Today, the doctor gave me some Protopic (tacrolimus 0.03%) samples to try for the next few weeks until I see her again. She also took a biopsy to try for a more definitive diagnosis.

    I was unpleasantly surprised at how much the local anaesthetic injection hurt. “OUCH!” FLINCH. This from me! I’ve endured nine bone marrow biopsies with hardly a twitch. Adding insult to injury, the biopsy hurt anyway, and the spot then was covered with an adhesive bandage that pulls at my already sore skin. Ironic how it’s the little stuff that gets to you.

    I finished just in time to head to my dental appointment where I was subjected to more than an hour of painful cleaning and examination due to more plaque and staining than usual. I nearly came out of the chair at one point when Dr. F jabbed a particularly tender spot. Xerostomia (dry mouth) is taking its toll over time, aided and abetted by the tongue surgeries I had in October. I have three cavities (top right, top left, bottom left) but the dentist says my mouth and tongue look very healthy in general. I return in three weeks, coincidentally same day as dermatology again, for fillings. Good thing we picked up dental insurance this year.

    After the dentist, I went to physical therapy. I couldn’t do my exercises today because of the biopsy but had the lymphatic massage on my neck. The area of my neck under my chin feels very hard and numb. I’m concerned about permanent fibrosis. The goal of the massage is to keep everything moving.

    At least I got a bit of good news when I returned home – a message from my hematologist that my potassium levels are normal. One less thing to worry about and a positive end to an otherwise yucky day.

    Day +770: My mouth is dry, my legs are weak…

    “I’m thinking this cause I can’t speak.
    If you only knew what you’re putting me through…”

    1/8/2013: This afternoon, the phone rings. “Hello, this is Debbie from Dr. B’s office. He asked me to talk to you about last week’s blood work and schedule a follow-up…” In that few seconds, I feel my heart stop. I can’t believe how quickly my mind races through the many fears, the possibilities of what might be wrong. This would not have happened in my pre-cancer life. I don’t spend time dwelling on the negatives but each day nonetheless holds some split-second reminder of how things have changed. I miss that sense of innocence and complacency that had arisen from 56 years of being essentially fat and happy and in remarkably good health.

    As Debbie continues in the next few seconds, I learn that the anomaly in my blood work is elevated potassium. Dr. B recommends that I avoid potassium rich foods like bananas, oranges, and tomato sauces (none of which I often eat anyway) this week and get a retest on Friday. Some quick research pretty much allays my fears. I don’t have any symptoms, it was normal four weeks earlier, and false readings are not uncommon, especially if there’s a delay in processing the blood. I had the blood drawn on January 2, and unlike the CBC, the CMP was processed by a third-party lab. Most likely, a lot of people were still on vacation or not functioning at best capacity the day after the holidays. It’s great that Dr. B is diligent with follow-ups but I realize if he were very worried, he’d have called me personally. He never relays bad news through others and he’s always very straightforward, qualities that make me trust him implicitly. I’ll post an update when I get my next results.

    In the meantime, as promised, here’s a somewhat overdue tagline update:

    Day +711: Hurt So Good, John [Cougar] Mellencamp (IDed by Chris)
    Day +720: Growltiger’s Last Stand from the Andrew Lloyd Webber musical, Cats – lyrics by T.S. Eliot (IDed by Guy and indirectly by Robb)
    Day +731: Let’s Live for Today, The Grass Roots (IDed by Debbie)
    Day + 737: Ride the Wild Wind, Queen
    . Revolution 9, The Beatles (IDed by Chris)
    . Truckin’, The Grateful Dead (IDed by Debbie)
    . The Long And Winding Road, The Beatles (IDed by Debbie)
    Day +743: Bargain, The Who (IDed by Debbie and partly IDed by Chris)
    Day+762: Time Passages, Al Stewart
    . 99.9 F, Suzanne Vega
    Day +764: I Am Woman by Helen Reddy (IDed by Chris and Dana with a valiant attempt by Robb)

    Day +764: Oh yes I am wise but it’s wisdom born of pain…

    “Yes, I’ve paid the price
    But look how much I gained
    If I have to, I can do anything
    I am strong (strong)
    I am invincible (invincible)….”

    1/2/13: Happy 2013 everyone. Thank you so much for your support and encouragement throughout the past year. I really like Michael’s abbreviated 2012 year in review, particularly the travel advice! However, he did neglect mentioning one big event. Although I’m still not much for cooking, I love, love, love our beautiful and functional remodeled kitchen. Anyway, it has been a year of ups and downs but it’s flown by with amazing (frightening) speed.

    The holidays were good – time with family and friends. Of course, I was thrilled that we got a little snow. On the down side, I picked up an upper respiratory infection of some sort but am not suffering too much, and it hasn’t gotten in the way of my daily activities.

    I saw my hematologist for my regular three-month checkup today, and my blood work continues to look great.

    January 2, 2013:
    WBC: 10.8 (norm 3.0-11.2)
    Granulocytes (~ANC): 6.3 (norm 1.4-9.0)
    Platelets: 513 (norm 130-382)
    RBC: 4.74 (norm 3.90-4.90)
    HGB (hemoglobin): 14.9 (norm 11.5-14.3)
    HCT (hematocrit): 46.0 (norm 34.2-42.2)
    Bilirubin: 0.5 (norm 0.0-1.2)
    Alkaline phosphatase, S: 128 (norm 25-150)
    AST: 21 (normal 0-40)
    ALT: 16 (normal 0-40)
    Potassium, serum: 5.3 (norm 3.5-5.2)
    LDH: 174 (norm 0-214)

    Dr. B was delighted with my recent bone marrow biopsy results. He was also happy that my lymph nodes were all clear and was impressed with the surgeon’s work on my neck. Despite his specialty being hematology, he was extremely interested in the details of my surgeries. He asked if my speech impediment would continue to improve (after noting that it is very minor). I told him about my tongue exercises and that I’m to practice saying lots of “s” and “z” words. His response: “But not ‘f’ words?” I laughed and assured him that I’ve practiced them a good bit, too, in recent months.

    These past three years since I was first diagnosed with MDS have been difficult but I’ve managed to stay positive and optimistic most of the time. However, I’ve found this task a greater challenge with the base of tongue cancer despite the treatments being less intense, the recovery time much shorter, and the prognosis more positive than it was for the blood cancer. Perhaps it’s the cumulative effect of one thing on top of another. Yes, I am strong but of course I’m not invincible! I feel a lot of anger, self-pity, and longing for my pre-cancer life at times. Then I think about how well I’ve fared through it all and start feeling guilty because so many others are much worse off than I. But I saw a quote recently that helped. I can’t find it now but it went something like this: “Saying it’s wrong to be sad because others have it worse than you is like saying you shouldn’t be happy because others have it better.” (If anyone can direct me to the actual quote/source, I’d much appreciate it.)

    Another of Michael’s remarks that is oh so true: “Life is good, it’s day to day living that is the pain.” I am both happy and grateful to be alive! But some days are definitely better than others.

    Let’s hope that 2013 will be a better year for all of us.

    I started this post an hour and a half ago (troubles putting thoughts into words) and had good intentions to update taglines this time but the hour is late, and I grow weary…next time, I promise. Procrastinate now!

    Day+762: Well I’m not the kind to live in the past…

    “…The years run too short and the days too fast…”

    ” …The things you lean on
    Are the things that don’t last..
    Well it’s just now
    and then my line gets cast into these
    Time passages”

    Happy New Year everyone…

    This will be the life saga (abbr. 2012 only) in 99.9 words or less. Karen is getting ready for a very small New Year’s gathering. She straightened up the house, made chili today, and is awaiting the boys. All very mundane and very ordinary; which is really what we hope for in the coming year. The high of meeting Mary Lou, Karen’s bone marrow donor, in the spring to the falling off the cliff with the news of SCC in the summer and subsequent surgeries this fall made 2012 a roller coaster ride not for the faint of heart.

    Days slip by…

    Karen continues to exhibit minor GvHD symptoms in her eyes and skin; and the neck and throat surgeries brought about a couple of new “side effects” – slightly restricted neck and arm movement, a little speech impediment, and a touch of lymphedema.

    Life is good, it’s day-to-day living that is the pain.

    To everyone out there, we thank you for your support and understanding and wish you a great 2013!

    For everyone on a similar journey as Karen: Burn the roadmap and take a different path!

    Seriously, we wish you the best! High Hopes – dare to dream, dare to live!!!

    Insert Bugs Bunny Epitaph here.

    Michael

    Day +743: In life, one and one don’t make two…

    “I look at my face in the mirror
    I know I’m worth nothing without you
    In life, one and one don’t make two
    One and one make one
    And I’m looking for that free ride to me
    I’m looking for you

    “I’d gladly lose me to find you
    I’d gladly give up all I got
    To catch you I’m gonna run and never stop

    “I’d pay any price just to win you
    Surrender my good life for bad

    “I’d call that a bargain
    The best I ever had”

    12/12/12: The message from my transplant nurse practitioner today was short and oh so very sweet:

    ***************************************************

      “Bone marrow biopsy shows no evidence of disease with 100% donor. Great news.”

    ***************************************************

    Mary Lou, I think we both agree that you, and consequently I, have some excellent bone marrow!

    Going back to Michael’s post last week, yes, the biopsy was painful but finished very expeditiously, and I wasn’t even sore the day afterwards. Much, much better than last year’s. On the other hand (both arms actually), my immunizations were painful for the moment and very sore for a couple of days. Again, I felt sorry for toddlers going through this who don’t even understand the benefit of the shots. I received the following vaccinations:

    • diphtheria/Tetanus (actually got this 11/19/12 after the cat bite)
    • H. influenzae type b conjugate [bacterial meningitis]
    • Hepatitis B
    • Inactivated polio
    • Pneumovax 23 [pneumococcal pneumonia]
    • MMR (live attenuated virus) [measles-mumps-rubella]

    I also had my seasonal flu shot in September.

    Another difference from last year’s exam was that they drew only 4 tubes of blood (instead of 11). Blood work continues to be very good:

    December 6:
    WBC: 8730 (norm 4500.-11000.)
    ANC: 4310 (norm 1500.-7800.)
    Platelets: 584 (norm 150-350)
    RBC: 4.39 (norm 4.00-5.20)
    HGB (hemoglobin): 14.2 (norm 12.00-15.00)
    HCT (hematocrit): 42.2 (norm 36.00-46.00)
    Bilirubin: 0.7 (normal 0.1-1.2)
    AST: 24 (normal 0-31)
    ALT: 20 (normal 0-31)
    Alkaline Phosphatase: 114 (norm 30-120)
    Ferritin: 393 (norm 10-300)

    All in all, the day passed quickly and easily.

    Yesterday, I returned to Hopkins for a swallow study and consultation with the speech pathologist, Heather Starmer. She asked me to eat and drink some barium laced items – applesauce, juice, and pudding on a very dry graham cracker. After each bite, radiologist Dr. Fynes and Heather studied a real-time x-ray as I swallowed to find any problem areas. As I already knew, food does tend to stick a bit in my throat but overall my functionality is very good with no evidence of aspiration. As long as I drink plenty when I’m eating, all is well. Heather instructed me on some swallowing and tongue exercises to improve speaking and eating functionality further. I also have some lymphedema under my chin – Heather said to ask my physiotherapist to show me how to do the lymphatic massage myself to augment the massages I get during therapy.

    Other than continuing physical therapy 2-3 times weekly, my next medical appointments aren’t until my recheck MRI and followup with the surgeon and speech pathologist next month. Hurray, a little break for the holidays!

    Look for tag line updates next post – there’s still time to send your guesses on old posts, too!

    Day + 737 Ride the wild wind… Push the envelope, don’t sit on the fence…

    “(Hey, hey, hey)
    Ride the wild wind
    Live life on the razor’s edge
    (Hey, hey, hey)
    Gonna ride the whirlwind
    It ain’t dangerous – enough for me”

    Greetings everyone, we are happily at home after spending the day at Johns Hopkins for Karen’s TWO YEAR post BMT check-up!

    The morning started with the usual blood draw in preparation to see the doctors. Karen will publish the counts, but they are good!

    ” …number nine, number nine, number nine …”

    Karen had a bit of anxiety over having to face yet another bone marrow biopsy. The last one wasn’t a joy; hence, one never knows. She had a new Tech, Don, assisted by Tasha to extract the required sample plus the additional donation for research (my lab rat participates in all studies and trials if the opportunity presents itself – a little for others and the future). Don executed the biopsy flawlessly, but it was very painful.

    We ate at the cafeteria after the procedure; Karen had a steak fajita salad. There was enough food that Rocky, too, will eat well tonight. Food tastes ok which is ever a major quality of life factor!

    Karen ran into her neck surgeon in the hall and had a short chat. Her neck scars where quickly assessed and directed to be covered up! Well, it was an honest opinion, not a “wow you look great but you really looked awful earlier” – Karen can explain this phenomenon later.

    The visit with the transplant doctor was short but good. It can be summed up with: You’re doing great! Get your two year “baby” shots, yup it is a spot on your back, see the Dermatologist and come back soon – I mean in a year. Karen’s NP has new boots and a new hair color which were the topics to cover awkward waiting periods. What did one expect – things are going well!

    “…Lately it occurs to me what a long, strange trip it’s been…”

    The opening tagline is really directed at how quickly another year has passed. For everyone on a similar path as Karen: we wish you the best on “the long and winding road” of Life!

    There all you alls out there, that is four songs to ID!

    Cheers!

    Michael

    Day +731: Sha-la-la-la-la-la, live for today…

    “Sha-la-la-la-la-la, live for today
    And don’t worry ’bout tomorrow, hey, hey, hey
    Sha-la-la-la-la-la, live for today
    Live for today…”

    11/30/12 01:04:42: Exactly two years ago at this time, Mary Lou’s marrow began entering my bloodstream and finding its way into my bones for rebirth as my new immune system. I have no words to thank her sufficiently for her incredible gift of life.

    Happiness comes in moments. Seize each one as it comes your way.

    Day +720: Woe to the bristly bandicoot that lurked on foreign ships…

    “And woe to any cat with whom Growltiger came to grips!”

    image11/19/12: Updates are fewer and further between – that’s a good sign that things are going well.

    Physical therapy is good, although not progressing as fast as I’d like. I was hoping to be able to turn my head well enough to drive by now, especially since we got a new Subaru Legacy last week. When we moved here nearly 10 years ago, we said we’d just stay in and enjoy our cozy place in the woods when it snows. I love snow! This worked well until I started having health issues; now we face each winter with a certain amount of trepidation – what if I need medical attention and we can’t get out? We decided it was finally time to get an all wheel drive vehicle for the peace of mind.

    We had a delicious lunch out on Saturday (my first Mexican food post surgery) with my mother, sister, and brother-in-law. Unfortunately, Mom took a tumble on the way back to the car afterwards and ended up at Hopkins Bayview ER. After scans from head to toe, we know she is fine but it’s better to be sure. Michael and I decided we’ve spent way too much time at hospitals lately, a variety of them at that! Thankfully, we are all okay.

    What has all this to do with the tag line? Absolutely nothing. Another small incident last week. Those who know our “Oreo cat” Dory Alexander know he is a very social animal, our official greeter for all human visitors (or even our woodland friends – squirrels, raccoons, deer). Unfortunately, he absolutely hates the neighbor’s cat, Squirty, and literally guards our property against him tooth and nail. I had the bad judgment to pick up Dory and try to bring him inside for the night while Squirty was still in the yard. Dory was so intent on getting back to the chase that he bit my right index finger, four deep puncture wounds that hurt like the dickens (not exactly the word I used at the time). This is the first, and hopefully last, time in 11 years that he’s done this, so I never saw it coming. My finger swelled up like a balloon and continued to hurt badly for the next day or two but with a splint, antibiotics, a tetanus shot, and salt water soaks it’s healing well now.

    Here’s hoping for more boring times from now on!

    Wishing our American readers a safe and happy Thanksgiving…we again have much to be thankful for this year. I am so happy to be here, living the life that I love.

    Day +711: Come on baby, make it hurt so good

    11/10/12: An easy tagline today, often used for workouts and physical therapy, and chosen because I started physical therapy on my neck and shoulders yesterday. I returned to my previous therapist from a year ago, Suze, fortunate to have someone I like close to home. Initially, I’ll be continuing the exercises I’ve already been doing but increasing repetitions and hold times. She also gave me a heavenly massage. I can’t wait to return on Monday for another. It makes the pain worthwhile.

    I’m doing very well, down to painkillers twice a day. I switched from hydrocodone with Tylenol to plain oxycodone (5mg) because I’m worried about too much Tylenol damaging my liver. I learned during my transplant that although narcotics are dangerous because of their addictive qualities, they are much easier physically on the body because of the way they’re metabolized. This has to do with a family of cytochrome enzymes called P450. I had intended to explain this process further but after a lot of reading, I still don’t understand it well enough to do so succinctly. A chemist I’ll never be!

    Thank you again for the support and the comments here. We appreciate them all greatly!

    Tag line update
    Day +702: Cat’s in the Kettle, Bob Rivers (IDed by Leslie)
    Day +703: Keep on the Sunny Side, The Whites from O Brother Where Art Thou? (originally written in 1899 by Ada Blenkhorn with music by J. Howard Entwisle)
    Day +707: I’m Still Standing, Elton John (IDed by Chris)
    Day +708: There Only Was One Choice, Harry Chapin
    Day + 709: Celebration, Kool and the Gang (IDed by Linda)

    Just curious, did anyone look up the Harry Chapin epic? It’s from one of my favorites of his albums, Danceband on the Titanic. I used to listen to it over and over on cassette (or was it 8-track?), driving back and forth to college – a very long time ago, lol. Both Michael and I love Harry Chapin because he was such a great story teller.

    Day + 709: Yahoo! This is your celebration

    “…Celebrate good times, come on! (Let’s celebrate)
    Celebrate good times, come on! (Let’s celebrate)…”

    You’ll just have to read Day+708 and guess why we are excited!

    Michael

    Day +708: What I’ve run through my body, what I’ve run through my mind …

    “My breath’s the only rhythm — and the tempo is my time
    My enemy is hopelessness — my ally honest doubt
    The answer is a question that I never will find out”

    11/7/12: Some of you have asked the understandable question that we contemplated ourselves, even as we awaited the pathology results: If the lymph nodes are not cancerous, why did you have the neck dissection? Wasn’t it unnecessary surgery? That depends on your definition of necessary. I’ll do my best to explain the situation as I understand it, going all the way back to the original diagnosis.

    Diagnosis

    The initial diagnosis of cancer resulted from a biopsy taken from a one centimeter lesion on the left base of my tongue. This biopsy showed squamous cell carcinoma (SCC) with presence of the human papilloma virus (HPV+), moderately differentiated (medium growth rate), and invasive (in the deeper epithelial tissue as well as on the surface). This diagnosis was confirmed independently by different pathologists from different facilities using the actual slides. Because this is a biological examination on a cellular level, a misdiagnosis is unlikely.

    The next step was a PET/CT (positron emission tomography/computed tomography) scan to determine if the cancer had spread. Unlike tissue pathology, the PET/CT is a nuclear imaging tool that shows different levels of metabolic activity throughout the body after injecting a combination of a radioactive isotope and glucose. Malignant tumors are very metabolic and rapidly absorb the glucose. A specially trained radiologist interprets areas with elevated uptake values or “hot spots” and decides if they’re indicative of cancer or some other anomalies. This is a combination of art and science but when augmented with other clinical data as well as known progression paths for some cancers, it is quite accurate – about 87% for head and neck cancers, and is the best non-invasive diagnostic tool currently available. Still, there can be “false negatives” where cancer is present but not detected or “false positives” where the hot spots are caused by other types of inflammation. Obviously, a false negative is more dangerous.

    In my case, the PET scan showed increased metabolic activity on my tongue base and in lymph nodes on both sides of my neck, consistent with the usual “drainage” paths of base-of-tongue SCC. Based on studies, the metatastic path of this type of cancer is quite predictable. There was no evidence of cancer elsewhere in my body. My PET scan was also interpreted independently by multiple radiologists at multiple institutions.

    In addition to my biopsy and PET/CT scan, I also had an MRI (magnetic resonance imaging) scan with contrast to verify the results, and I was physically examined with a scope on four separate occasions by three individual specialists plus a multidisciplinary team of medical oncologists, radiation oncologists, surgeons, speech pathologists, and medical students.

    Based on all of this information, I was diagnosed as T1N2cM0, Stage IV SCC HPV+, where T1 means a primary tumor of < 2 cm, N2c means lymph node metastases on both sides of my neck, and M0 means no other metastases evident. If the suspected lymph node involvment had been only on the same side as the primary tumor, it would have been classified as Stage II instead of Stage IV. Stage III classifications are reserved for larger tumors.

    Treatment

    At most top cancer centers, including Johns Hopkins, the currently preferred treatment for this diagnosis is radiation plus chemotherapy with a platinum based agent, and no surgery. HPV+ cancers respond well to this protocol and have a high cure rate. In addition, base of tongue surgery has a high potential for impacting speech and swallowing functions, both huge quality of life issues.

    However, being the medical “wonder” that I am, the doctors considered my prior MDS and bone marrow transplant as part of the equation. Chemotherapy and radiation are both carcinogenic in themselves and can cause MDS or other cancers. Ordinarily, this risk is far outweighed by the need to eliminate the current cancer as quickly and completely as possible. But I’m already at high risk for MDS relapse, plus radiation or chemotherapy could exacerbate my existing chronic graft-versus-host disease. Thus, my team wanted to avoid these therapies if at all possible.

    Fortunately, my primary tumor was small and located completely to the left of the center line of my tongue. This made me an excellent candidate for TORS (transoral robotic surgery) with minimal functional impact. Robotic surgery was approved for otolaryngeal cancers only about 4 years ago, so I’m very lucky to have had this option available.

    My TORS surgery was successful with clear margins and no evidence of residual cancer. Great news!

    The “hot” spots on my lymph nodes, although on both sides, were relatively small, indicating that the cancer probably had been caught early. But the best way to confirm the actual extent of lymph node involvment is via surgical removal, i.e., neck dissection. Needle biopsies are not practical in this case because there are so many lymph nodes and they’re so small. Head and neck cancers have a high incidence of microscopic cancer (dispersed single cells as opposed to clusters or tumors) that could easily be missed with a needle biopsy. Therfore, it’s common practice, particularly for breast or head and neck cancers, to remove numbers of nodes for pathological testing and diagnosis. This provides valuable information for optimizing treatment plans. If no nodes are positive, there’s a very low risk of hidden cancer cells remaining. However, even a single positive node dramatically increases the probability of undetected microscopic cells elsewhere.

    For neck dissections, surgeons used to remove nerves and arteries in addition to the lymph nodes, resulting in significant functional impact. Fortunately, they’ve gotten a lot smarter and more precise and are able to excise the nodes while leaving most of the nerves and arteries intact. They’ve also learned that removing levels I and V carry a higher risk for complications and a much lower risk for cancer than the other levels. Therfore, my neck dissection included only levels II-IV and is classified as “selective” instead of the “modified radical” I was expecting. The surgeon does not remove the lymph nodes one at a time but in clusters with surrounding fatty tissue. It is up to the pathologist to separate, count, and test the nodes. The pathologist determines if there is any cancer evident within each node and also looks for capsular leakage that indicates the cancer has spread from the capsule enclosing the node into the surrounding tissue. The results are used to decide if further radiation and/or chemotherapy is recommended.

    According to pathology, I had a total of 92 lymph nodes removed – 51 on my right side and 41 on my left side. Although there was no cancer detected in any of them, there was inflammation termed as “granulomatous lymphadenitis” which was further tested for fungal (GMS) and acid fast (AFB) organisms with negative results. No cancer is great news! I need to ask my doctor if I should pursue the cause of the inflammation since it is currently unknown. She believes it could be related to my graft-versus-host disease. I’ll discuss this with my transplant doctor.

    So, based on pathology from the surgeries, my revised diagnosis is T1N0M0, Stage I (small tumor, no metastases).

    I should find out tomorrow if radiation treatment is still recommended. I’m hoping it won’t be but will update this post as soon as I know. Update 11/8/12: I just got great news from my surgeon. The tumor board reviewed my case again this morning and are all in agreement that I do not need radiation. I’m to have a follow-up MRI with contrast in 2-1/2 months and again 3 months after that to confirm all is well. After that, I’ll be monitored clinically at increasing intervals.

    Future Impact of Surgeries

    At this point, I honestly don’t know what my long term effects will be from my surgeries. It’s too soon to tell. My doctors are optimistic. My surgery sites are healing very well thus far.

    I’m still having some trouble speaking but everyone tells me I don’t sound too bad, and my speech is understandable. Eating is difficult but I’m able to eat normal, solid food as long as I drink plenty of water. I require additional hygiene after meals because the food gets trapped. Both speech and eating will undoubtably improve with time and therapy but I don’t know what my new normal will be.

    Scarring should not be too bad on my neck. Dr. G did a great job following the natural creases in my neck and using glue instead of stitches or staples to minimize cosmetic effect.

    Before I agreed to the neck dissection, I asked both my hematologist and my surgeon about the consequences of having lymph nodes removed. One worry is lymphedema, where the lymph accumulates locally because of blockage and causes swelling, pain, and risk for infection. This is more common for breast cancer patients who’ve had the lymph nodes removed from under their arms. Although possible with neck dissections, it is less likely, and can be treated with lymphatic massage if caught early. My surgeon said my neck looks fantastic at the moment with less accumulation of fluid than usual for this stage of recovery. It’s still a possibility that I need to monitor.

    A larger concern is the potential impact on my immune system. I’ve asked my doctors and searched the web. Although it seems counterintuitive, the doctors said there should be no impact on my immunities – there’s enough redundancy in the lymphatic system with hundreds of nodes to make up the difference. The system will modify the flow to bypass the missing nodes, and the remaining nodes are sufficient to maintain immune function. I sure hope they’re right!

    My neck mobility is impaired but that will definitely improve with time and therapy. I still have numbness in my ears and along my jawline. I have some weakness in my left arm that should improve with therapy. Again, I don’t know what to expect as a new norm. I need to be diligent with my physical therapy to prevent future issues with scar tissue. I’ll probably start my formal physical therapy next week, although I’ve been doing my neck and shoulder exercises daily since the day after my dissection.

    I’ll write some follow-up posts to track my recovery over the next year.

    Conclusion

    Based on everything I’ve said here, I definitely believe that surgery was the correct choice, both the TORS and the neck dissection. Without it, the doctors and I had no way of knowing for certain whether the cancer was in my lymph nodes. There was compelling evidence of nodal involvement. The main point of the surgery was to avoid chemotheraphy altogether and hopefully avoid or reduce radiation because of my MDS and transplant. If the doctors had ignored my prior medical history, then I’d have been automatically treated with radiation and chemotherapy without surgery, based on my SCC HPV+ diagnosis, putting me at much greater risk for MDS relapse or graft-versus-host complications. Also, in cases of HPV negative or where head and neck tumors are larger or in locations other than base of tongue, it is not uncommon to do surgery on the primary and use neck dissection as a diagnostic tool to determine if additional treatments are advisable. My treatment was still standard care in that sense.

    It’s never a bad thing to be told you don’t have cancer unless, of course, it is a false negative that would cause it to go untreated. There are no guarantees that all the microscopic SCC cells are gone and that I’m not at risk for recurrence. However, my prognosis at this point is excellent!

    In closing, I’ll quote another few lines from the tagline, an epic 14:12 long song by Harry Chapin. I’ve given you half the answer but look it up to find the title – the lyrics are worth a read, or better yet, try to listen to the song – it’s quite interesting musically because of the many variations as the song progresses. It’s also very autobiographical and ironic on his part.

    “And as I wander with my music through the jungles of despair
    My kid will learn guitar and find his street corner somewhere
    There he’ll make the silence listen to the dream behind the voice
    And show his minstrel Hamlet daddy that there only was one choice”

    p.s. Please let me know if you have questions or if I’ve inadvertently provided any misinformation!

    Day +707: Don’t you know I’m still standing better than I ever did…

    “Looking like a true survivor, feeling like a little kid
    I’m still standing after all this time”

    11/6/12: It’s been a long day, and I’m super tired but couldn’t wait to share the good news my surgeon gave us today. All the lymph nodes she removed show no evidence of disease! There was swelling and inflammation, hence the hot spots on the PET scan, but no cancer. Dr. G is presenting my case to the tumor board again on Thursday to discuss recommendations regarding further treatment/follow-up. Fingers crossed that I won’t need radiation after all! :-)

    I’ll write more about upcoming physical and speech therapy another day.

    Day +703: Clouds and storms will in time pass away…

    “The sun again will shine bright and clear.
    Keep on the sunny side, always on the sunny side,
    Keep on the sunny side of life.”

    11/2/12: I woke up this morning expecting to feel much better with the drains out. I did feel better physically but bluer than ever emotionally. I sat in my chair and decided to spend the day dozing and feeling sorry for myself and was successful in this endeavor until midday.

    Then my friend, Sugar Sorbet (name anagrammed to protect the innocent), called and offered to come and get me to go back to his place for a Dexter date. We’ve been watching the show together since its inception in 2006. I don’t have Showtime so we always watch at his house. He kindly accumulates all the episodes but waits for me before he watches. On the way out, I grabbed from the freezer a pint of the delicious ice cream that my donor, Mary Lou, sent me from ecreamery.com – this is some seriously good stuff! It turned out to be a terrific afternoon. Dexter ended on a potentially awful plot line last season but took a turn for the better with the first two new episodes we watched today – they were both very good.

    Tonight, Michael treated me to a belated birthday dinner at Josef’s, our local hangout. Surprisingly, with the help of lots of water and hot tea, I was able to enjoy their homemade liver pate on toast points AND a reasonably sized piece of veal piccata. Being the foodie that I am, this was a very big deal. Veal turns out to be a good texture – thinly sliced and not stringy or crumbly like other meats. We always sit at the bar, and I hid discreetly behind my napkin so I wouldn’t gross anyone out with my slightly contorted chewing.

    All in all, a good day!

    Day +702: There’s a cat in the kettle at the Peking Moon…

    “…the place where I eat every day at noon.”

    Cat in the Kettle11/1/12: No, this is not another from our Weird Al collection, although it is incorrectly attributed to him on the Internet. It is a parody, however, of Harry Chapin’s Cat’s in the Cradle. That’s your hint for the day. This Cat in the Kettle video is very funny.

    I had a bad night – couldn’t get comfortable for sleeping and got up irritable and nauseated again. I was expecting a call from Hopkins to reschedule my drain removal and my surgeon checkup, so naturally everyone but them called. I tried calling the scheduler at noon but all I got was voicemail. Eventually, I obtained a number for the nurses’ station, and they told me I could come in anytime today or tomorrow for the drains. I took some hydrocodone for pain and Ativan for nausea and hitched a ride with my brother-in-law downtown. We didn’t have to wait long at all and the nurse, Maureen, was very nice. She forewarned me that it would be “take your breath away” painful each time she pulled one of the four drains. I’d also read this in another patient’s blog so was worried. Actually, it wasn’t bad at all, just a very brief twinge each time. I was grateful I’d taken the pain killers ahead of time. Hurray, a step toward normalcy again, no more borg tubes.

    I’ve been rather depressed the past few days, longing for the ordinary post transplant life I’d happily settled into before this latest cancer turned everything upside down once more. It’s especially upsetting to have the nausea return and to have so much trouble eating again. My throat isn’t very sore but my tongue isn’t moving properly, nor is my jaw, so the food gets trapped in various unreachable places when I try to chew or in my throat on the way down. Before this, my brother-in-law and I used to stop at P.F. Chang’s frequently for lunch or dinner on the way to or from Hopkins appointments. Today, I made up my mind I was going to go there and eat my usual fare. We always get an array of appetizers to share and top it off with banana spring rolls for dessert. We sat in a dark corner of the bar since my table manners aren’t great right now. I substituted wonton for my usual hot and sour soup and didn’t have room for dessert but I was able to eat at least a few bites of everything else – crab wontons, chicken lettuce wraps, and dynamite shrimp. It was frustratingly slow going, and I consumed two pots of peach ginger tea and two large glasses of water to get it all down but I did it! Small victories. I brought Michael carry-out mu shu pork for dinner. He didn’t eat it all so that may be my lunch tomorrow.

    You’ve done well with tag lines this week. We’ll give you credit for the ID even if you didn’t get the titles or artists quite right in every case, all in the spirit of good fun.

    Tag Lines:
    Day +698: Do I Creep You Out, Weird Al Yankovic – parody of Do I Make You Proud by Taylor Hicks
    Day +700: Ballroom Blitz, Sweet (IDed by Chris, Dana, good attempts by Guy and Robb)
    ……….Whatever You Like, Weird Al Yankovic – parody of Whatever You Like by T.I. (IDed by Guy and Mike)
    Day +701: This Is Halloween, Danny Elfman from Nightmare Before Christmas (IDed by Robb, Leslie)

    Day +701: This is Halloween, this is Halloween – Pumpkins scream in the dead of night

    “This is Halloween, everybody make a scene
    Trick or treat till the neighbors gonna die of fright
    It’s our town, everybody scream
    In this town of Halloween”

    10/31/12: Happy Halloween Everybody! Too bad we never get trick or treaters here. I could be very frightening this year with the perfect slit throat costume.

    We had routine furnace mainenance today, and they sent a new guy. I don’t know what he thought when he saw me but he maintained his cool: “I’ve never seen an A-frame before. I always was curious about them.”

    Not much new. Michael returned to work after another week off. I’m managing fine by myself although I am extremely nauseous. I took an Ativan for the first time in quite awhile which pretty much quelled the nausea but also made me terribly drowsy. I keep nodding off in the middle of doing things.

    I’m still waiting to hear when I’ll be able to get the drains out. Sandy caused everything to be rescheduled, and they’re still playing catch-up at Hopkins.

    Good job on the primary tag line last post but still no guesses for the second. Anyone? Mike K? Guy, good guess on #1 although not correct. Now I can’t get Kung Foo Fighting out of my head. Great song. Robb, it isn’t Time Warp either, although that’s what popped into my mind when Michael first quoted the lines. Dana and Chris have it.

    Be safe and enjoy your Halloween!

    Day +700: Oh yeah! It was like lightning…

    “…Everybody was frightening…”

    Greetings from a dry house with electric power/internet; hence, “Sandy” was very kind to us. Sticks in abundance throughout the yard which is normal after every storm.

    Karen’s appointment to get the drains out today has been postponed until Thursday. The drain sites are very sore and the tubes cumbersome. Although in concept emptying the drains is not very difficult, in practice it is not fun.

    This is the TMI section: The four plastic bulbs to collect the fluids provide a little vacuum pressure to assist draining. To empty the drain lines, one pinches off the end of the tube by the neck and with an alcohol pad runs the fluids towards the bulb with the other hand. However, the lines like to stretch and can “snap” back – with a result that is extremely painful at Karen’s neck. To avoid this, I anchor the pinching hand on the shoulder until I move the fluids four to six inches away from the neck then reposition the blocking hand. Untangling the lines before hand is also essential. Initially, all drains yielded red fluids with all but one turning to amber, then yellow by day three. The volume has been 20ml or less per drain. We’ve been emptying the bulbs twice a day (recommended was thrice). A part of the effort is sometimes to break up or move clots out of the tubes. Again not to offend sensibilities, but a part of this is always for others on a similar journey.

    Karen also has been fretting over the extended use of painkillers, specifically the narcotics, and often tries to stretch out the periods between meds over the “allowed” dosage timetable. It is her balancing act of dealing with the pain now and wanting an easy transition after the tubes come out. Additionally, the drugs tend to put the bowels out of action.

    “… I said you can have whatever you like…
    Yeah..

    … …Mac and cheese would be alright…”

    Food has been mostly liquid offset by “semi-solids” such as soups or Mac&Cheese.

    All and all, Karen is doing well – moments of fear and anxiety do happen, but mostly it is dealing with the things of the moment.

    Thank you for those who actively comment on the Blog – it is appreciated. Hence, I added the second tagline just for the entertainment value!

    Cheers
    Michael

    Day +698: But the only question with me now is “Do I creep you out?”

    10/28/12: A quiet Sunday afternoon, all tucked in and ready for the approaching Frankenstorm, thanks to some great help from Susanne, John, and Joseph this morning, clearing the driveway and deck and putting away deck furniture. Help from both of our families has made all of this so much easier.

    I’m still taking pain meds around the clock but am doing well and eating better all the time. The thicker bean and pea soups go down easily in normal sized bites, as do cake and ice cream :-). This may not sound like much but, believe me, it’s a big step forward from taking hours to finish a single cup of clear broth in small sips last week.

    The four drains in my neck are uncomfortable but not unbearable. I don’t think I mentioned that my incisions are closed with glue instead of staples or stitches – lots more comfortable and should produce less scarring, too!

    It occurred to me belatedly that some of the photos I’ve posted might be too creepy for our viewing public with the tubes sticking out from my neck and the dangling containers of multi-colored fluids. If so, sorry! As usual, I was so selfishly preoccupied with the more interesting mechanical and biological aspects of the setup that I didn’t even think about how it looks to others. Come November, I promise to resume posting more civilized snaps minus tubes and with my “nice” wigs.

    Michael is stuck with the twice daily chore of “stripping” the drains. This entails applying steady pressure the full length of each tube (without pulling on the part attached to my neck) to purge the tube of clots and fluids. He then has to empty the containers into separate cups to measure quantity and note any suspicious cloudiness or color. It sounds awful, I know, but he’s doing a great job and never complains a bit! By the time I’ve finished all of my medical treatments for MDS and SCC, he’ll be fully qualified for a new profession in case he tires of being a government guy.

    I’ve been doing my physical therapy exercises twice daily and can already see a little improvement in my left arm strength.

    Time to catch up on some tag lines:
    Day +688: It Only Hurts for a Little While, Ames Brothers/also covered by Skeeter Davis (IDed by Linda, Guy)
    Day +689: Purple Haze, Jimi Hendrix (IDed by Debbie)
    Day +692: Getting Better, The Beatles (IDed by Leslie)
    Day +693: Leavin’ on a Jet Plane, John Denver/covered by many others including Mamas & Papas, Peter, Paul & Mary, Ben Affleck (IDed by Robb, Dana, Leslie)
    Day +693: Gypsies, Tramps & Thieves, Cher (IDed by Dana)
    Day +694: Star Trekkin’, The Firm (IDed by Mike and Cindy)
    ……….Sneaky Snake, Tom T. Hall (IDed by Susanne)
    ……….It’s All About the Pentiums, Weird Al Yankovic – parody of It’s All About the Benjamins by Puff Daddy (IDed by Mike)
    ……….I’ll Sue Ya, Weird Al Yankovic
    Day +695: Handle with Care, Travelling Wilburys
    Day +695: Wake Me Up, Wham – George Michael
    Day +696: Birthday, The Beatles (IDed by Leslie)
    ……….Tradition, from Fiddler on the Roof
    ……….Happy Birthday to You, traditional ©Warner Chappell

    We’ve really enjoyed your participation this week, particularly the well timed “Ben Afffleck” reference from Leslie and the John Denver irony from Robb. The added commentaries are icing on the cake. Keep those IDs coming!

    Day +696: You say it’s your birthday…It’s my birthday, too – yeah…

    “They say it’s your birthday
    We’re gonna have a good time
    I’m glad it’s your birthday
    Happy birthday to you.

    “Yes we’re going to a party party
    Yes we’re going to a party party
    Yes we’re going to a party party.

    “I would like you to dance–Birthday
    Take a cha-cha-cha-chance-Birthday
    I would like you to dance–Birthday
    Dance”

    10/26/12: My birthday got off to a great start with my tech, Lashawna, dancing me around the room and singing to me at 2 a.m. when she came to take my vitals. The doctors and students team followed at 6:30 a.m. They loved my costume and sang a round of Happy Birthday. My gift from them is that I’ll most likely be going home today.

    Will add to post as day progresses :-).

    12:45 pm – I have a student nurse assigned just to me today. We entertained her with Weird Al videos, including Like a Surgeon, Living with a Hernia, I’m Fat, Perform this Way, Another Tattoo, and Party in the CIA, all essential components for a young nurse in training.

    We roamed the halls, Bride of Frankenstein wig in place, and enjoyed the smiles as well as the puzzled, pitying, or downright peculiar looks.

    Rumor has it that my discharge papers are ready but I need to wait to see the doctor about the drainage tubes.

    I’m about to have a milkshake for lunch. I tried scrambled eggs for breakfast but they were too dry. I decided that on my birthday I shouldn’t have to fight to eat and opted for the easy lunch.

    We’ll post later if/when we’re home…

    Home again…

    3:00 pm – I was discharged after lunch – the cafeteria sent me home with a birthday cake! We left the hospital by 2 pm and made it home within the hour. I’m already settled into my favorite chair, ready for my afternoon nap. Once more, life is good. I ended up keeping all 4 drains – fine by me! I’d prefer to have them all removed at once when I return for my checkup on Tuesday.

    8:00 pm – I’m so happy to be here. My surgeon called a little while ago to see how I am and was surprised that I answered the phone myself. After visits, delightfully ghastly gifts, singing, and ice cream cake from family and with my kitties and my love by my side, life is indeed beautiful.

    xoxo,
    Karen

    “…Tradition, Tradition…
    …Tradition, Tradition…”

    Happy birthday Mausi, Happy birthday to you,
    Happy birthday dear Mausi, Happy birthday to you!

    Love,
    Misch

    Of course I’m very anxious for us to go home today – Karen has always been very excited over her birthday, and ’bout 28 years ago, I started the “birthday present a day” between our anniversary and her birthday. Some years it was very challenging to come up with ideas to cover the period. However, Karen loves Halloween and now there is Amazon! Very early on in our marriage she was in the hospital for gall bladder surgery and I got her a little statue of a goblin sitting on a throne of skulls – at that point I thought it a little ghastly to bring it to the hospital – ah, but not anymore!

    Happy Birthday Mausi!

    Michael

    The Goblin King

    The Goblin King

    p.s. from Karen – Ha, I remember so well the raised eyebrows of the hospital staff as I giggled gleefully over the skull goblin with strains of Michael Stipe (R.E.M.) singing “Losing My Religion” on the radio in the background. It must have been number one that week because they kept playing it over and over. Of course that predated personalized iPod playlists by a long time!

    Day +695: Wake me up before you go-go…

    Well, I caused another big ruckus at Hopkins yesterday. Recall two weeks ago, I was the rare patient with the post op bleed and rarer yet second bleed. The incident this time, fortunately, was not life threatening or even traumatic for me but I’ve got a lot of people very upset.

    I woke up a little early in the OR, as they were finishing up my procedure. At first, I thought they were all done, but then could hear them talking and could feel some tugging and activity (no pain). My eyes were covered so I couldn’t see anything. I just lay there, quiet and motionless, so they had no clue I was awake until the anaestheologist took the covering from my eyes. I had no idea it was such a big deal until I innocently said something. Wow, what a fuss I caused!

    Apparently, this is considered inhumane and horribly traumatic, something that should never, ever happen. I just thought it was great that I woke up so easily with no post anaesthesia grogginess or nausea. I woke up as easily two weeks ago (except not quite as early) and marveled at the beauty of modern anaesthesia and even mentioned before this surgery what a great cocktail they’d mixed for me last time. They offered me immediate psychiatric counseling as well as a standing long term offer in case of any PTSD (post traumatic stress disorder) despite my assurances that I am not at all upset, quite the contrary found the whole thing very interesting.

    You’re probably thinking, “Oh, they’re just worried about a potential lawsuit.” Although this possibly was a concern, it was clear that these people genuinely cared about my being okay and felt like they’d failed me. My care here has been top notch. My anaesthesiologist and a couple of other doctors spoke with me separately at length. Dr. P is apparently one of their most highly regarded anaesthesiologists and had a perfect record of nothing ever going wrong until now. He was extremely distraught and upset with himself that this could happen. I actually felt bad for him and almost wished I hadn’t said anything.

    My surgeon told me that many hospitals use an EEG strip across the forehead to monitor patients for consciousness. She said there will be a board review over my incident, and she hopes it will result in the same policy being implemented at Johns Hopkins. My doctors all told me to quit being a statistical outlier but I can’t help it that I’m a “wonder” – it’s not a path I choose. I try so hard to be a boring patient!

    I did NOT like being an oddball having MDS with an unusually high number of chromosome abnormalities at an unusually young age. I definitely did NOT like getting a second, unrelated relatively rare cancer or being among the small percentage of surgery patients with post op bleeds. I didn’t even like being among the tiny percentage of people who don’t get their hair back properly post chemo. But I’m glad this particular waking incident happened to me instead of to someone who would have felt traumatized or someone who would have seized an opportunity to sue and potentially ruin an excellent doctor’s reputation or career. I’m also happy to contribute to prevention of a recurrence with someone else if a new policy is implemented. I like doing what I can to further science, technology, and medicine when it’s with no harm to myself. :-)

    p.s. I also updated my previous post with today’s activities.

    Day + 695: Been beat up and battered round…

    “Been sent up, and I’ve been shot down
    You’re the best thing that Ive ever found
    Handle me with care

    Reputation’s changeable
    Situation’s tolerable
    Baby, you’re adorable
    Handle me with care…”

    Michael, my caregiver, my love, my life – THANK YOU. I couldn’t have done it without you.

    10/25/12: Two drain tubes emerging from each side of my neck, and neck is extremely sore and stiff from my positioning during the 4-hour surgery but drugged and resting, doing okay. More later.

    Later, as promised…

    It’s been an okay day. I’m thoroughly medicated on painkillers but still mostly coherent. My surgeon visited this morning and was incredibly upbeat. She said she removed nodes in levels II-IV, and pathology should be back in a week. She didn’t remove levels I or V because the potential benefits do not outweigh the potential risks – there’s a higher risk of complications on those levels and a low risk of cancer. My incisions and drains are looking good.

    The physical therapist has been to see me already and checked my range of motion and gave me a bunch of exercises to start immediately. I also walked a dozen laps around the ward.

    I’m going to try my first solid food in two weeks for dinner tonight – mac and cheese should be arriving momentarily. They have a nice system here where you call and order room service from a menu, rather like a hotel.

    Tomorrow, they’re hoping to remove two of the drains and let me go home if all is well.

    Thanks for all of the support and good thoughts – we do appreciate them.

    We’ll keep you posted.

    Day + 694: …Boldly going forward ’cause we can’t find reverse…

    “… … Medical update, Dr. McCoy…”

    Hello everyone, Karen went into pre-op at 10:00 and then into the OR at 13:24. During the pre-op discussion with her surgeon we were told that the surgery would be at least 4 hours. Additionally, the Dr. relayed that the biopsies from the last surgery were clean. This is great news!

    Will post status as the day progresses.

    16:11 Status update from OR: Going fine so far – still working.
    17:38 Dr. G just came and talked to me; she was very upbeat and happy with the surgery. Karen is in post-op now. I anticipate being able to see her within the hour.
    19:04 Still waiting for follow-on word from recovery
    22:24 Karen is settled in Ward 4A, pain is manageable; however, she is having a hard time getting her head positioned so it doesn’t hurt. Looking for some nap time ( we did the birthday ritual).

    At first, I wasn’t sure if I would use this particular tagline and picture; however, it is close to Halloween. The concept of a neck dissection conjured images in my head when coupled to the robotic surgery that all led to the enclosed picture. More to the point, over the course of Karen’s treatments and in the face of unknowns it is easy for the imagination to jump to the worst of possibilities. For instance, we have talked about the bone marrow biopsies being not joyful, but the harder part is the waiting on results to come back – that time of unknown.

    Karen brought her bride of Frankenstein wig – spirit and humor will carry her thru; in the mean time you’re stuck waiting with me.

    “… And then Sneaky Snake goes dancin’, wigglin’, and a-hissin’
    Sneaky Snake goes dancin’, gigglin”, and a-kissin’…”

    During the signing of the consent forms, the doctors are obligated to inform the patient of the potential risks & side effects. In discussion with Karen’s anesthesiologist, Dr. Michael Phelps, the doctor likened the likelihood of catastrophic blood clot to the chance of being bit by a rattlesnake (7 fatalities cited last year). Of course, Karen having a small leaning towards math started discussing with the Dr. the demographic of human population density in contrast to the distribution of rattlesnakes. Pre-op is weird!

    “…You’re just about as useless as jpegs to Hellen Keller…”

    Well, the Army does teach one to wait – I’m pretty good at waiting, but do feel fairly helpless as things are being done just walls away.

    There gives y’all three taglines to chase (now four).

    More to follow…..

    Michael

    Note: “…I sued Ben Affleck… …Aw, do I even need a reason?…” Thank you Leslie, we had a good tension-easing laugh this morning watching the clip of Ben Affleck singing Leaving on a Jet Plane. Not the “singer” we were going for but great!

    Day +693: Sell a couple bottles of Doctor Good…

    The focus of the moment is quickly shifting to the second surgery but before that wave hits us – I want to outline our concoctions.

    After the TORS we were a little surprised that Karen’s staple diet through the BMT transplant, milkshakes, did not work because of cold / nerve sensitivity. Hence, warming the liquids became key.

    The shakes consisted of one chocolate or vanilla Carnation Breakfast Essentials (11 fl oz/ 250 cal) mixed with 2 opposite flavor Häagen Dazs ice creams (3.6oz cup/ 220 cal). Mixing the flavors toned down the intensity of the pure chocolate or vanilla flavors. This was mixed with a ten ounce glass of ice in the blender.

    To increase the calorie level at that time, we started adding BeneColorie; however, the almost fishoil or varnish consistency didn’t tend to mix in as well, and it had an unpleasant aftertaste.

    Post the TORS, we added vanilla Nestle Boost, Very High Calorie (8 fl oz / 530 cal). The viscosity of the Boost is better than the BeneCalorie but not great. No bad aftertaste. Adding a packet of Swiss Miss Hot Chocolate helped.

    The shake with Boost, ice cream, Instant Breakfast and ice top out at a little more than a liter of fluids – warmed, Karen nursed that throughout the day.

    A Boost, Häagen Dazs, and Swiss Miss Hot Chocolate combo made a more reasonable serving (about 11 oz – I still added a little ice during mixing). I sampled it and thought it tasted yummy but Karen said it was a little thick. She liked the liter mix better.

    As Karen was not on steroids during the BMT or post surgery and has never had blood sugar issues, maximizing calorie intake was the focus, not managing sugar intake!

    Note: Carnation Instant Breakfast is available with no sugar added. We did try some of the Ensure products, too, but settled on this set of concoctions.

    Also, I realize that the powder mixes are more economical and varied, but for consistency in preparing the mix, I liked the little bottles and ice cream cups. Plus prior to my own second cup of coffee, I’m not very functional – it all had to be doable in Zombie mode.

    Warm herbal teas with honey (Tazo Zen, Twinings Chamomile or Peppermint, and Traditional Medicinals Throat Coat), chicken and beef broth, and boullion broth were also essential this time. The Throat Coat tea was recommended by Karen’s speech pathologist.

    Discovery learning,

    Cheers
    Michael

    Day +693: My bags are packed, I’m ready to go…


    10/23/12: As ready as I’ll ever be, I suppose. My neck dissection was originally scheduled for 7:30 tomorrow morning but got pushed until noon. That means we can arrive at the hospital at the more reasonable hour of 9:30 a.m. instead of 5:30 a.m.! Presumably, my hospital stay will be 3-5 days. I don’t have a good idea of what to expect this time, despite talking with my doctors and nurses and reading accounts from others who’ve had similar surgeries because the information varies quite a bit. I guess it’s a case where I’ll just have to wait and see. I trust my surgeon to do a good job. That’s what’s important at this point.

    The good news is that my throat pain is much better today. I haven’t had any hydrocodone since yesterday – just a couple of Tylenol. I’m continuing to enjoy this beautiful autumn we’re having. The view from our little home in the woods is lovely. I hate leaving it, even for a few days.

    Day +692: I have to admit it’s getting better, a little better all the time…


    10/22/12: Good morning! I finally noticed some improvement yesterday, mainly that I was able to wait an extra hour in between pain meds plus I was able to consume a larger quantity of my liquid diet.

    Michael put the finishing touches on my Halloween Mausoleum setup, and it looks great! The photo really doesn’t do it justice without the associated lights, sounds, and moving parts. My grandnephew came over to watch Prometheus (the prequel to the Alien movies) with me last night – all in all a good day.

    I slept well and required no pain meds for more than 11 hours – I still need them to be able to eat and drink more than a sip though…a step at a time.

    Day +689: Acting funny and I don’t know why…

    “Excuse me while I kiss the sky…”

    10/19/12: Ok, an exaggeration, I’m not that high but I am rather hazy today. The pain worsened quite a bit in the middle of the night, and I reached a point where I couldn’t even drink water. I have a high tolerance for pain and thus far had managed with only Tylenol during the day and one lowest dose hydrocodone (5/500) overnight. Starting around 4:30 this morning, I gave in and started taking the next higher hydrocodone level (7.5/500) every 5 hours to keep ahead of the pain and to keep myself hydrated. It’s working but I’ve always been a “cheap drunk” and am therefore a little loopier than my normal self and taking more naps. It still isn’t as bad as the mucositis I had post transplant. The big difference is that I was hospitalized then and received all the meds and fluids via IV. Anyway, I’m resting well and healing.

    Day +688: It only hurts for a little while…

    “That’s what they tell me, that’s what they say.”

    10/18/12: It’s still extremely painful for about 15 minutes after every time I try to eat and drink but I’m managing to stay hydrated. Clear liquids are about all I can deal with. I spoke with the triage nurse at Hopkins today, and she conferred with my surgeon. They said that it’s not uncommon for the pain to start to get better and then worsen again when the nerves reknit. I should feel better again in another few days, just in time for my next surgery. No signs of any complications. When I’m not eating or drinking, I don’t feel too bad.

    Michael returned to work for a few days since I’m fine on my own now. Did I mention he gives me a gift every day between our anniversary and my birthday? It’s wonderful being born in October because I get lots of fun Halloween themed presents. Last night we watched the film Dark Shadows, a remake of the old 60s TV vampire soap directed by Tim Burton and starring Johnny Depp, Michelle Pfeiffer, and Helena Bonham Carter. It was okay although not one of Burton’s best. He could have done a lot more but from the interviews I watched afterwards, it was apparent they all had a great time making the movie. One of the reasons I like watching films on disc is seeing the interesting behind the scenes interviews and “making of” features that you miss in the theater or with download services like Netflix.

    That’s it for now…I see a nap on my horizon. A beautiful fall day here.

    Tag Line Update
    Day +665: Waiting, Jack Johnson (IDed by Thomas)
    Day +671: Arkansas Traveler, Michele Shocked
    Day +676: Headlong, Queen
    Day +681: Brain Dead, Pink Floyd (IDed by Thomas, Dana)
    ……. Helpless, Neil Young
    Day +681-682: Someone Saved My Life Tonight, Elton John
    …… Note: “Tuesday” was a reference from the ER TV show but Mike’s song guess of On Tuesday by Men Without Hats was very appropriate!!
    Day +682: Everything’s Alright from Jesus Christ Superstar (IDed by Dave, Dana)
    Day +683: Ode to Billie Joe, Bobbie Gentry (IDed by Guy)
    ……. I Want More, Chumbawamba
    Day +684: Sunday Morning Coming Down, Kris Kristofferson/also covered by Johnny Cash (IDed by Guy)
    Day +685: I’m Not in Love, 10cc (IDed by Guy)
    Day +685: Back Home Again, John Denver
    Day +687: Take Your Pain Away, The Eurythmics (IDed by Leslie)

    Addendum from Michael on the “Tuesday” reference: Karen watched the entire 15 seasons of ER from the time she was originally diagnosed with MDS. One instance I found a little surrealistic was sitting “gowned up” in the University of Maryland isolation ward where she was being treated for pneumonia and watching ER. The thing that struck a chord with us is in the “making of ER” featurette, it was noted that when a patient enters the Emergency Room it is often the most important day of their life, whereas to the staff it is “Tuesday” – another patient, just another day at work. Hence, to Karen and I, it is a reference to the whole medical and support team doing their best each day and, like all of us, some days are better than others.

    Day + 687: If I could find a way…

    “…To soothe your troubled mind
    Then I would erase your fears
    And help you to unwind

    I would ease the burden
    That you carry everyday
    Oh, don’t you know I’d find a cure
    And take your pain away

    Take your pain away…”

    Karen picked this tag line for some day in the future; however, it seems appropriate for today. We have been home for two days and nothing serious is wrong, but then again nothing goes smoothly! Pain management is increasingly difficult with Karen having sharp pains in her ear and throat, sometimes rising to her temple. Her tongue is very coated and we’ve started a Nystatin regimen. Today she is back on clear liquids. Objectively, we both realize this is all very temporary, but in contrast to how good she felt immediately after the surgery, this…well…simply ain’t great. Moment by moment.

    Later.
    Michael

    Day +685: Hey, it’s good to be back home again…

    “Sometimes this old farm feels like a long lost friend
    Yes, ‘n, hey it’s good to be back home again”

    10/15/12: Cats, naps, pain meds and Michael’s special Haagen Dazs milkshake for dinner. Life is good again…well, at least okay. It IS good to be home. I had a lazy afternoon, lying back in my recliner, half-sleeping and half-listening to my music collection on the iPad. I have some intense pain in brief episodes, generally after I nap and don’t move my tongue awhile and then try to drink/swallow upon awakening. Swallowing is a little tricky, not from a pain point of view so much as mechanically being a bit off but I am already doing better with that. I’m to remain on a full liquid diet until after the next surgery on the 24th. I’m treading carefully with the pain meds, fearful of nausea and vomiting. So far, just a little queasiness. Michael is taking very good care of me and nagging regularly about keeping hydrated and trying to eat.

    Thanks for all the well wishes and for playing our music game with us!

    Goodnight all.

    Karen

    Day + 685: “… Ooh you wait a long time for me…”

    ” …Ooh you wait a long time for me…”
    “…requesting quiet … requesting quiet … requesting quiet”

    Good Morning. Karen is resting. Pain management is the operative word today (she handles that just fine, been with me for 28 years after all). After the morning Doctors’ round, Karen was placed on a full liquid day. Note: In reference to yesterday’s tag line, Kris Kristofferson would not find this very satisfying.

    All in all very quiet, maybe be released this evening.

    Short update, released from the hospital this afternoon; Karen is very tired. Working on fluids and napping but at HOME!

    Later…..

    Michael

    Day + 684: “…Well I woke up Sunday morning…”

    “…with no way to hold my head that didn’t hurt..”

    Karen is currently napping.

    She had a very quiet night, and we were visited very early by Karen’s primary Surgeon in “civies” checking on how she was doing. Karen and I both had to laugh when the Dr. reiterated the unlikelihood of post surgery bleeding (4%) and the very small odds of a second or third episode. Being math people by nature and having had Karen “hit” long odds consistently, when something is said to be unlikely or improbable, it is a good time to “duck”!

    The morning routine progressed with the team of doctors doing the rounds. Karen endured another scope literally thru the nose to ensure the surgery site was healing ok. Karen is not prone to complain about pain, but was uncomfortable, and being bed bound for so much time has made her back very sore.

    For the curious in reference to the back pain, in the ICU, Karen is tethered to the multiple monitors in addition to the IVs. So getting up to walk like up on the transplant ward is not very doable.

    Day ahead, we are expected to leave the ICU and move to the 4th floor ward for another day of observation. All very routine for our “normal” day.

    Note: One song IDed! (Today’s tag line was too perfect not to use, meaning I didn’t check if It is a duplicate.)

    Michael

    Day +683: “…I’ll have another piece of Apple pie, you know it don’t seem right…”

    Did I mention Karen is staying in the ICU tonight? We got home about 2PM, Karen got settled in her comfy chair, sipping on a cool bottle of southern water with which she was trying to wash down a first meal of delicious pudding. The cats were happily playing the in-out-in-out game, and I was putting stuff away from the stay, when this surrealistic setting was washed away by a few simple words: “I’m bleeding.” We quickly went through a couple of paper towels, some expletives ’cause I couldn’t find a mouse-light quickly (hard to see the back of the throat), and then an untheatrical 911 call.

    The bleeding mostly subsided by the time the ambulance arrived (we were happy about that).

    By 4:52 we had a secluded room in the Upper Chesapeake Hospital ER. “…Saturday night in Leeds…”; well Saturday night in the county meant a couple of heart attack cases and a steady flow of ambulance traffic. Did I mention Karen is fine…well you should have read ahead….
    At 7:12 the ER doctor examined Karen and after a call to Karen’s surgeon at Johns Hopkins, she was transported via ambulance back to Johns Hopkins ICU for a night of observation.

    Notes: We really liked the UCH ER doctor! Karen and I are pretty good at waiting, and you have to appreciate that the team needed to deal with the most critical first. Besides, we really didn’t want to be number 1 again.

    Sleep well! ID those tag lines – at least two in here…

    Michael

    Day +682: Try not to get worried…

    “Try not to turn on to
    Problems that upset you, oh.
    Don’t you know
    Everything’s alright, yes, everything’s fine.
    And we want you to sleep well tonight.
    Let the world turn without you tonight.
    If we try, we’ll get by, so forget all about us tonight”

    Got the breathing tube and foley catheter out this afternoon and am feeling human again. I had my last dose of Fentanyl at noon and just using IV administered Tylenol have been pain free except when I swallow. I look like I was in a bar brawl. My tongue is still pretty swollen from last night’s life saving maneuver so I’m not able to drink and can barely talk but all in all doing very well. Let’s keep it that way tonight!

    Day + 681-682 …Someone saved my life tonight…

    …Someone saved my life tonight…

    Nothing is ever as simple as planned, true of complex robotic surgery. Karen is ok. Again, Karen is ok, but…

    At about 10:48 Karen started spitting up blood. We buzzed our ICU nurse, which rolled into motion an episode of ER. By 10:50 Karen’s room was crowed with the ICU team. Dr. Ryan L. had popped up on Karen’s hospital bed and was using a set of tongs with gauze (tonsil ball) to apply direct pressure to the tongue and back of the throat. He very calmly worked and directed the team. Used a flashlight, then scope to look for specific source of bleeding. A “level one” warning order went to the Operating Room. The nurses were busy transferring IVs and disconnecting monitors for transport. By 10:51 the on-call surgical team arrived. Then, literally seconds later, with Karen sitting upright in the bed with the doctor sitting opposite still applying pressure, they were rolled away to the OR.

    (Nobody yelled cut. – recording times is what iPADs are for).

    …Waiting again…

    Around 11:00 first call came to the ICU that Karen’s primary doctor was there.
    11:37 came the call that they had the bleeding under control.
    12:15 The DR came and told me what they had encountered / done. Cauterized a couple of areas. Karen was coming back to the ICU shortly, they packed her mouth with gauze and because of that put in a breathing tube.
    By 01:30 she was settled back into the ICU.
    We already had the morning round and the packing gauze has been removed. Think of it like a magician pulling yards of streamers out of his sleeve.

    It was the most important moment in our life – it was “Tuesday” (really Friday). …but you get bonus point if you understand the reference.

    The unexpected is always there…nice to have a top notch team waiting in the wings.

    Cheers.
    Michael

    The Morning AfterAlso, this is a reminder about this BLOG in general; for Karen and me, it serves as a reminder of what she is going thru, a roadmap for others on a similar journey (we recommend skipping this particular scenic stop if possible) and last, a way to communicate.

    From Karen: The morning after. I was stunned at the havoc wreaked by my post op bleed last night. They told me the bleed is quite uncommon, occuring in less than 4% of patients. I’m grateful for the calm, rapid, and skilled response of my medical team.

    Day +681: There’s someone in my head and it’s not me…


    10/11/12: I asked Michael to post this while he’s waiting for me to get out of surgery. The timing for the tagline was too perfect with my surgical team and da Vinci robot working their magic while I sleep. Please ignore the fact that in the photo the surgeons are performing abdominal rather than throat surgery! It was my favorite pic of those I found. I especially liked the nice dark room.

    Karen

    At 3:21 Karen went in the operating room.

    “…Helpless, helpless, helpless
    …Baby can you hear me now…
    …The chains are locked…
    …and tied across the door…
    Baby, sing with me somehow…”

    At 5:21 Waiting…no update…
    At 6:08 Still in surgery, heard from OR nurse.
    At 7:12 Karen is in post-OP, will be in ICU tonight – no room at the inn problems being worked. I talked with the DR surgery went ok.

    Michael

    imageAddendum from Karen: Much better than I expected! I awoke in the OR and could already talk and swallow. Allowed to sip water and Italian ice when I got to my room. Isn’t modern technology wonderful! In the pre-robot days, they’d have split my jaw to get to my base of tongue.

    Day +676: And you’re rushing headlong, you’ve got a new goal…

    10/6/12: Sorry it has taken so long to post an update after my consult with the surgeon on September 28 but I like to stay relatively positive here. After the doctor kept me waiting two hours, then rushed me through the appointment and still didn’t finish in time to coordinate scheduling for my surgeries, I had nothing good to say. At least Michael kept you entertained in the meantime – he does have a way with words!

    Everything got sorted Monday morning, and the appointments are in place: speech pathology baseline and preop physical October 8, robotic tongue surgery (partial glossectomy) on October 11 (our 28th wedding anniversary), and bilateral modified radical neck dissection on October 24 (two days before my birthday). I’ve already ordered my bride of Frankenstein wig for Halloween from Amazon!

    I found a video on You Tube that does a good job describing the transoral robotic surgery (TORS) procedure. I’m so thankful that this fairly new technique is available. Surgeons used to have to cut through the jaw to reach tumors in the throat and then do reconstructive surgery afterwards to clean up the mess. With the non-invasive robot, only the tumor and surrounding margins are resected.

    Lymph NodesI’ll spare you the gory details of the neck dissection (even the name is creepy, isn’t it!) but did find an interesting clinical anatomy document with diagrams describing all the levels of lymph nodes in the neck. Basically, “radical” in this case means removing the nodes at all levels, while “modified” means preserving the nerves and other major structures. The doctors say they don’t expect a significant functional impact. I hope they’re right! I will have some great “Frankenstein” incisions just in time for Halloween though.

    I don’t know yet if I’ll need radiation therapy later. That will depend on the extent of the cancer in my lymph nodes. Because of my post MDS and transplant status, they’re moving cautiously.

    I had my routine hematologist visit on Wednesday. My blood is still looking good, and it’s always reassuring to talk with Dr. Bahrani. We talked a lot about my upcoming treatments, and he believes I’m on the right path for recovery. He also allayed a lot of my fears, especially regarding the lymph node removal. I don’t see him again until January but he asked me to email him with updates in the interim.

    That’s it for now. We’re headed out for a movie date shortly, a double feature of Frankenweenie and Hotel Transylvania with Mexican dinner in between.

    Michael or I will keep you updated with my progress.

    October 3, 2012
    WBC: 11.3 (norm 3.0-11.2)
    Granulocytes (~ANC): 5.7 (norm 1.4-9.0)
    Platelets: 254 (norm 130-382)
    RBC: 4.59 (norm 3.90-4.90)
    HGB (hemoglobin): 15.4 (norm 11.5-14.3)
    HCT (hematocrit): 45.9 (norm 34.2-42.2)
    Bilirubin: 0.6 (norm 0.0-1.2)
    Alkaline phosphatase, S: 124 (norm 25-150)
    AST: 22 (normal 0-40)
    ALT: 19 (normal 0-40)

    Day +671: …Hey farmer, you been livin’ here all your life – not yet

    “Hey farmer, where does this road go?
    Been livin’ here all my life, it ain’t gone nowhere yet…

    “… …Hey farmer, when you gonna fix that leakin’ roof?
    Ah stranger, when it’s a rainin’ it’s too wet to fix it
    And when it’s dry it’s just as good as any man’s house…

    “… …Hey farmer, you’re not too far from a fool are you?
    Just a barbed-wire fence between us
    Hey farmer, you don’t know very much do you?
    No, but I ain’t lost”

    Entropy or really mental entropy, or is it simply stagnation of the non-comprehending mind… eat your heart out Sigmund!
    Maybe just WTF…

    Yes, I have not posted in a while, more specifically, I haven’t posted since before the new cancer news.

    Leaking roof, paint, malfunctioning garage door, shorted out lights, trees growing out of the gutter spouts, general disarray of the yard, etc., etc., etc….

    Truth in advertising; home repair plus has never been first on my list – but what I’m really saying is there isn’t much mental flexibility left to care about anything not associated with treatment, treatment plans, and the emotional sine wave oscillation between pure apathy (minus?), utter helplessness (neutral!), and total frustration (plus?).

    Karen has alluded to the fact that I’m basically a pessimist – not quite true. In discussion with my new boss on the view of “if the glass is 1/2 empty or 1/2 full” my perspective is the glass contains piss so does it really matter? Drink up.

    So what? The real genius of the human mind is the ability to rationalize the absurd and create a new random norm. Too complicated – as stated before, it never ceases to amaze me how quickly the bizarre becomes ordinary.

    So we will manage, muddle, stumble, cry, fear, laugh and love, but most of all just carry on with each day, hour, minute, and second and try to keep our simple life together, doubly reminded how fragile and uncertain it all is.

    Cheers,
    Michael

    Day +665: Must I always be waiting, waiting on you…

    “I keep playing your part
    But it’s not my scene
    Want this plot to twist
    I’ve had enough mystery
    Keep building it up
    Then shooting me down
    But I’m already down

    “Just wait a minute
    Just sitting, waiting
    Just wait a minute
    Just sitting, waiting”

    9/25/12: I’m very frustrated with how slowly things seem to move through the bureaucracy of Johns Hopkins. Is this typical of the large cancer centers?

    I now have to meet with my surgeon, (the same doctor with whom I originally consulted), before I can even be put on the schedule. I asked why I couldn’t be placed on the schedule and then talk to her in the interim and was told that we have to meet face to face to discuss my treatment plan before the surgery consult form can be completed. The earliest appointment to see her is Friday. What I see is ANOTHER week gone by with this time bomb ticking away.

    Is this the price of going to a prestigious hospital? I’m feeling very helpless, caught between the proverbial rock and hard place. Should I have gone with a slightly less renowned but undoubtedly competent center like University of Maryland or Greater Baltimore Medical Center? Now I’ve already invested over a month with the local ENT and nearly another month with Hopkins and no scheduled treatment yet. If I changed at this point, I’d lose even more time.

    I’m not looking to you for answers today. I just really needed to vent.

    As promised in my previous post, recent tag lines:
    Day +571: Dentist!, from Little Shop of Horrors Soundtrack
    Day +628: You Took the Words Right Out of My Mouth, Meat Loaf
    Day +636: Hot Stuff, Donna Summer
    Day +637: I Love Rocky Road, Weird Al Yankovic – parody of I Love Rock and Roll by Joan Jett
    Day +640: 30,000 Lbs. of Bananas, Harry Chapin (IDed by Michael)
    Day +644: Carry On, Crosby, Stills, Nash & Young;
    …………………The Sidestep, Charles Durning in The Best Little Whorehouse in Texas
    Day +647: Mother and Child Reunion, Paul Simon
    Day +654: Peace of Mind, Boston
    Day +659: The Rock, Harry Chapin (IDed by Leslie)
    Day +661: Wonder, Natalie Merchant (IDed by Leslie, Toby, Cathy)

    A big thank you to everyone for your encouragement and support and an extra thank to those who participate in our silly little music game!

    Day +661: I must be one of the wonders of god’s own creation…

    “Doctors have come from distant cities just to see me.”

    9/21/12: Wow, what an experience today, and I mean that in a positive way. We arrived a little early and didn’t have time to settle into a chair in the waiting room before the nurse took me in to check my vitals. She handed me paperwork to complete but before I could finish line one, the first doctor was in to see me. She said not to worry about the paperwork – she’d rather ask the questions in person anyway.

    She talked a lot about HPV+ and why that’s good – it has a much higher cure rate than non-HPV related cancers. In answer to the earlier questions, it is very unlikely to be related to my MDS, transplant, chemo, prior smoking and family histories, or the original benign parotid tumor that indirectly led to my MDS diagnosis. Although my weakened immune system may have left me somewhat more vulnerable, HPV+ oropharyngeal cancers apparently arise with at least equal frequency in those with no predisposing factors. There are more than 100 strains of HPV and more than half the population have probably had an HPV infection. However, only a very small percentage of the strains are potentially cancer causing. Among the people who contract the dangerous strains, fewer yet eventually devlop cancer. The virus can also lie dormant for decades and never cause any problem. Fortunately, there is a vaccine available now to help prevent infection. If your teenage children haven’t been vaccinated already, it’s worth getting done.

    I asked about the lymph node involvement on both sides with such a small base of tongue (bot) tumor. She said they actually see that pretty often because the tongue is so vascular. 

    She escorted me to another room where a resident numbed my nose in preparation for the camera to be threaded through (yuck again). After a short wait, the room was literally filled with doctors and a couple of students – I believe there were 10 in all, not including Michael and me, in an average size examination room. They all introduced themselves and most said they’d also attended the big tumor board meeting yesterday where my case was presented by both my surgeon and other surgeon I’d consulted. All eyes were on the image of my throat and tongue on the screen. I had another thorough examination of my mouth and ears, too, and did some swallowing tests with dyed applesauce.

    The radiation oncologist was the lead today – I expected him to talk to me about radiation treatments and effects but instead he and the others all concurred excitedly that I was an ideal candidate for TORS (robotic surgery). Down to the last one, they were all extremely optimistic about my prognosis because the cancer is HPV+ and has apparently been detected very early compared to usual bot. They praised my local ENT highly for following up on something for which many others might have taken a “wait and see” approach. 

    I joked with the radiology oncologist that I was shocked he didn’t want to do radiation and with the medical oncologist that she didn’t want to do chemo and told them I expected everyone to advocate their own specialty. The surgeon spoke up with a grin, “Well, I still want to operate!” 

    They want to avoid or minimize radiation and chemo due to my past history. They’re going to determine that after my surgery which will be scheduled asap. Realistically, that may be as long as 4 weeks from now to find me a slot where both my surgeon and the robot are available, the downside to going to a busy high tech hospital. I was forewarned that I’ll be miserable post surgery but should heal well. The surgeon promised me the sorest throat I’ve ever had. I told him that would be a challenge since I had severe mucositis with the transplant. The first week post-surgery should be the worst.

    A few weeks after the TORS, they’ll do a neck dissection (removal of lymph nodes), the extent of which is still to be determined. This cannot be done with a robot. After the biopsy of the nodes they remove, they’ll determine if I should get a low dose of radiation for extra insurance.

    At the end of today’s session, even my stressed and pessimistic by nature husband was feeling better about my future. He assured me that yes, the doctors really were genuinely excited and optimistic – it was NOT just me grasping at straws and seeing something hopeful that wasn’t there. 

    I worry that the treatment might not be aggressive enough but I at least feel comfortable with my team and their competence and combined years of experience in a great cross-section of disciplines. I’m lucky to live so close to a top comprehensive cancer center. I don’t think I could be in better hands. I’m also an “interesting case” because of my transplant and gvhd so am getting more attention from more people than usual. I would rather be ordinary medically but the extra interest and attention is a good thing, I think.

    We were done in time to have the lunch buffet at our favorite Indian restaurant and ice cream at Dairy Queen on the way home.

    I’ll identify all of the recent taglines next post. In the meantime, I’m hoping to see some IDs or at least guesses. Remember, there’s no such thing as cheating in this game. All sources are legal.

    Day +659: He was showing them contingencies…

    9/19/12: I had my consultation with Dr. Tufaro at Johns Hopkins today and liked him very much. He examined my mouth and throat (the dreaded through the nose scope again) and palpated my neck in addition to looking at the cutaneous (i.e. skin) GvHD on my back. He was considerate and apologetic for any discomfort he caused during my exam and told me I’m a great patient. He also pulled up all of my test reports (MRI, PET, CT, and biopsy) on the computer and printed copies for me without my having to ask. He showed me the MRI images and discussed the results. He treated me with courtesy and respect and as an intelligent adult.

    He was very encouraging about my prognosis based on what he saw. First the bad news – involvement in lymph nodes on both sides of my neck is fairly certain as indicated in the original PET scan two weeks ago. However, he said this is quite common in base of tongue cancer because the tongue has so much lymphatic material; it is specifically designed to move debris and toxins to the lymph nodes to be handled. The “hot” spots on the nodes are also small. The base of tongue tumor is very small and does not cross the center line – it is on the left side. This means it is a good candidate for TORS (TransOral Robotic Surgery). The tumor is HPV 16+ (human papilloma virus type 16 positive) which, according to several studies, has a five times higher survival rate than HPV negative oropharyngeal cancer. The usual treatment is radiation and chemotherapy. The advantage to surgical removal of the primary tumor would be that the cancer could be treated with less radiation.

    The doctor is concerned about chemotherapy for me because I’ve had so much already with the bone marrow transplant. He’s also worried about the potential effects of radiation and chemotherapy on my graft-versus-host disease and wants to confer with another GvHD expert before making his recommendations to Dr. Gourin and the multidisciplinary team. He said he’d get this done before my meeting with them on Friday.

    He said that the treatments are very unpleasant but the long term prognosis for survival and quality of life make them worthwhile. A lot of the probable side effects, particularly from radiation, sound similar to what I’ve already experienced with the transplant – dry mouth, taste buds not working properly, and mucositis. In addition, because of the lymph node treatment, I’d also have a stiff neck. These effects should pretty much correct themselves with time and therapy, much as they’ve done with the BMT, although yet again I’ll probably have a new and different “normal” when all is said and done.

    I guess I didn’t get a lot of new information today (except the HPV+ factor) – I’ll know more on Friday – but I did feel encouraged that all is not hopeless. I had a good rapport with the doctor and I liked his positive but honest attitude. I liked it that he said, “It won’t be fun but I think this problem can be fixable.”

    As for my quest for pre-treatment poundage, I dined on crab soup, pot roast, and peanut butter pie for lunch on the way to my appointment and escargot, lobster, baked potato, and hazelnut mousse pie for dinner later this evening. At least this part of the preparation is fun :-).

    p.s. We had a great time visiting our friend last weekend! See Gallery 2 for the action shots, ha ha.

    Day +654: And you wanna run but somehow you just keep on stayin’ 

    “Now if you’re feelin’ kinda low ’bout the dues you’ve been paying 
    Future’s coming much too slow 
    And you wanna run but somehow you just keep on stayin’ 
    Can’t decide on which way to go 
    Yeah, yeah, yeah 

    “I understand about indecision 
    But I don’t care if I get behind 
    People livin’ in competition 
    All I want is to have my peace of mind.”

    9/14/12: My appointment with the multidisciplinary team has been postponed until next Friday. While perusing the Johns Hopkins website, I discovered one of their physicians, Dr. Tufaro, has expertise with both base of tongue cancer and graft-versus-host disease, a very unusual combination as far as I know. It occurred to me that he might have insights into my unique status as a transplantee. My consultation with him is scheduled for next Wednesday. He’s also a plastic surgeon and a dentist, a man of many talents. My surgeon wanted me to see the team after I’ve seen him, hence the postponement. It makes sense to have as much information as possible before making decisions about treatment.

    I had my MRI Wednesday, squeezed in between a lunch of steak fajitas on the way there and freshly made dark cherry ice cream with hot fudge on the way home. I’m trying to add a few pounds in anticipation of the probable upcoming loss. I’m not claustrophobic so the MRI was a piece of cake (mmmmmm). I know a lot of people panic at the thought of being trapped in a clanging tube but I lay there peacefully, closed my eyes, and let my thoughts wander. They’ve been wandering all over the place this past couple of weeks as I contemplate the frightening array of treatments that go with head and neck cancer. I’ve decided that blood cancers are perhaps kinder and gentler. Of course, there’s the “rear view mirror” bias at work here, too. Things do tend to look better in the known past than in the unknown future.

    We’re headed out of town this weekend to visit a friend. It will be great to do something fun and forget all of this medical stuff for awhile.

    Day +647: I would not give you false hope…

    9/7/12: Not much to report but I didn’t want to leave you wondering for a week.

    I had a brief appointment with my ENT this morning. He seemed upset that I was going to Johns Hopkins and didn’t have much to say. I cancelled my endoscopy appointment for next week. I think it will be best for me to get everything done through Hopkins. I’m lucky to live less than an hour away from the #1 ENT hospital and #3 cancer hospital in the United States.

    I had my initial consultation with a surgeon at Johns Hopkins this afternoon. Nothing concrete yet, but I had a good first impression. I feel more hopeful after talking with her. She was not able to read my PET image disc but questioned the report because of some of the uptake values. She said the spots were very small, the largest being only 1 cm. She forwarded the images to radiology (they have more experience reading “foreign” formats) and will confer with them. She also wants to get my actual biopsy slide and, if possible, do an HPV test on it.

    She did a thorough exam of my neck, head, ears, nose, and throat, including a look at my throat with the scope threaded through my nose, and said it was good that the lesion is small and on the left side rather than in the center because there is less potential for function impact from surgery.

    She wants me to get an MRI with contrast this week, saying this is the best diagnostic tool for the tongue base, and then wants me to meet with the multidisciplinary team next Friday to consider my case and treatment options, which may include TORS robotic surgery, radiation and/or chemotherapy. I won’t get any staging or prognosis information until my diagnosis is confirmed but I feel comfortable so far about being treated there.

    Day +646: I am a timebomb, a ticking ticking ticking timebomb

    “Hear the ticking of your heartbeat beating
    Hear the breaking of their promises
    Hear the smashing of your expectations…”

    9/6/12: A quick update. I got the PET scan results which confirm the spot on the base of my tongue plus indicate lymph node involvement on both sides of my neck. My consultation at Johns Hopkins is tomorrow. We’ll know more after that. The good news is that there’s no indication of cancer elsewhere in my body.

    Day +644: A new day, a new way, I knew I should see it along.

    “The sky is clearing and the night has gone out.
    The sun, he come, the world is all full of light.
    Rejoice, rejoice, we have no choice but to carry on.

    “The fortunes of fables are able to sing the song.
    Now witness the quickness with which we get along.
    To sing the blues you’ve got to live the tunes and carry on.”

    9/4/12: No news yet but the last post was such a downer, I think an interim update is in order. Michael and I had a roller coaster of a weekend with thoughts and emotions all over the place. 

    Then I did what I do. I searched the web, I read, I analyzed, I sought a logical sequence of events, a cause and effect, a path from there to here and from here forward. Of course all the conjectures will remain conjectures, never provable, never certain. But the mathematical part of my brain must still do this, futile as it may be, before it will rest and yield to the pragmatist I am at heart. 

    Then I did what I do. I thought of the potential test results – best, worst or in between – and devised a plan. So no matter what, I will carry on because that is what I do. No matter if the plan changes along the way – of course it will! But I am more at ease that I won’t feel pressured into a hasty decision in the process. I’ve thought things through ahead of time. This makes me calm and ready to face anything.

    I saw my hematologist and did blood work this morning. My PET scan is tomorrow afternoon, and I’ll probably get the results Thursday afternoon or Friday morning when I see my ENT again. I have a consultation with an otolaryngologist (I learned a new word) at the Johns Hopkins Head and Neck Cancer Clinic on Friday afternoon. Depending on the outcome of the Hopkins consult, I may reschedule the endoscopy. I’ll keep you all posted.

    “Ooh, I love to dance a little side step.” ***

    For those who have asked if this cancer is related to the MDS, the answer is “not really maybe indirectly sort of.” Squamous cell cancer (SCC) is probably best known as a type of skin cancer but is also the most common type of head and neck cancer and can occur anywhere there are epithelial cells (lungs, esophagus, bladder, sex organs, etc.). It’s completely distinct from the blood cancer. However, statistically, there is a higher incidence of SCC among those with autoimmune disorders, those who are immune compromised, or those who’ve had a transplant of any sort. There are theories and studies regarding reasons and correlations (such as chronic GvHD, chemotherapy, immunosuppressants) but apparently nothing definitive. At least one study suggests that patients with AML/MDS harbor a constitutional tendency towards the development of SCC. I am also at higher risk for head and neck cancer because I used to smoke and because my grandmother had head and neck cancer (although I don’t know if hers was SCC).

    ***Bonus tagline. Michael and I had a good laugh tonight watching the film clip that goes with this song. Extra credit if you name the film and actor.

    P.S. HAPPY BIRTHDAY, MARY LOU!

    September 4, 2012
    WBC: 11.7 (norm 3.0-11.2)
    Granulocytes (~ANC): 6.4 (norm 1.4-9.0)
    Platelets: 259 (norm 130-382)
    RBC: 4.80 (norm 3.90-4.90)
    HGB (hemoglobin): 16.0 (norm 11.5-14.3)
    HCT (hematocrit): 48.1 (norm 34.2-42.2)
    Bilirubin: 0.8 (norm 0.0-1.2)
    Alkaline phosphatase, S: 115 (norm 25-150)
    AST: 25 (normal 0-40)
    ALT: 22 (normal 0-40)

    Day +640: Harry, it sucks.

    8/31/12: My ENT called with the biopsy results this afternoon…squamous cell carcinoma on the base of my tongue. I won’t know anything more until further testing is completed, a PET scan next Wednesday and an esophagogastroduodenoscopy on September 13. He said he was very surprised because the spot did not look like cancer.

    This is where I’m supposed to say, “Oh, another bump in the road – we’ll beat this, too.” But I’m too upset and angry at the unfairness of it all to say much of anything right now.

    I’ll post more when the rest of the results are in.

    Day +637: I hear those ice cream bells and I start to drool…

    8/28/12: The procedure was surprisingly quick and easy. Going to the small outpatient surgery facility in Bel Air was so much better than going to a hospital – quiet, fast, and efficient. There are probably a lot fewer germs floating around there than at the hospital, too! I was in and out within a couple of hours. The Surgcenter is privately owned but Dr. Hoyt told me it is staffed with doctors from GBMC (Greater Baltimore Medical Center).

    The nurse checked my vitals, verified my history and allergies, and started my IV with no problem whatsoever.

    My ENT reviewed his potential “plans of attack” with Michael and me. He couldn’t be certain what he’d do until he actually got into my throat.

    The anaesthesiologist, Dr. Jose Dominguez, a personable and obviously knowledgeable fellow, spent as much time as I wanted explaining his part. Curious by nature, I always have lots of questions. Because my lesion was in a difficult-to-reach, prone-to-swelling area, I was given a cocktail consisting of a pain killer, a muscle relaxant, a steroid, an antiemetic, and a sleep inducer, and I also had a breathing tube. He told me the names of the drugs but I’ve already forgotten. Whatever they were, they worked beautifully. All I remember is very heavy eyelids and hearing “sweet dreams” and then “all done” seemingly a moment later although it was actually about 30 minutes. I awakened easily with no unpleasant aftereffects.

    My ENT told Michael that the spot was easier to reach, shallower, and simpler to remove than anticipated. He took a biopsy sample and cauterized the lesion. He prescribed liquid painkillers and a liquid diet for the day and a bland, soft diet for the rest of the week, with a return checkup in two weeks.

    I awoke from the anaesthesia very hungry so we stopped at Wendy’s on the way home for a milkshake. They were small so I had two :-). My cat, Maya, and I had a long nap this afternoon, and I had Haagen Dazs ice cream cups (they were small so I had 2 :-), Dulce de Leche and Strawberry), chicken noodle soup, and two cups of Parisian roast coffee for dinner. My throat and ear are a little sore but eating and talking don’t hurt too much. I didn’t need any painkillers – didn’t even get prescription filled. More ice cream, Edy’s Butterfinger, for an evening snack. Yes, life is good!

    We’re hoping to get the biopsy results Friday.

    Day +636: Looking for some hot stuff…

    8/27/12: For the past couple of weeks, I’ve been obsessively craving all of my favorite hot and spicy cuisines – Thai, Indian, Mexican, barbecue, cinnamon, ginger, Buffalo chicken, jalapeno poppers, french fried jalapeno slices. I’ve even added chopped fresh jalapenos to my salads! It must have something to do with the fear that I might not have them for awhile after my surgery tomorrow. No food or drink after midnight tonight. I’ve stocked up on ice cream for afterwards.

    Day +628: On a hot summer night, would you offer your throat…

    “…to the wolf with the red roses?”

    8/19/12: How can it be mid-August already?! The summer is flying by quickly, as I knew it would. This has been the hottest summer I’ve seen in a very long time but I’m not outside much so it doesn’t affect me dramatically. It is actually very cool today, in the 70s F.

    It’s been more than 20 months since my bone marrow transplant. I had a regular checkup with my hematologist, Dr. Bahrani, on July 16. He says my color looks excellent and he’s thrilled that I’m able to enjoy eating. I don’t see him again until October. My blood work continues to look good:

    July 16, 2012
    WBC: 7.6 (norm 3.0-11.2)
    Granulocytes (~ANC): 3.4 (norm 1.4-9.0)
    Platelets: 362 (norm 130-382)
    RBC: 4.40 (norm 3.90-4.90)
    HGB (hemoglobin): 14.4 (norm 11.5-14.3)
    HCT (hematocrit): 44.1 (norm 34.2-42.2)
    Bilirubin: 0.6 (norm 0.0-1.2)
    Alkaline phosphatase, S: 148 (norm 25-150)
    AST: 39 (normal 0-40)
    ALT: 35 (normal 0-40)

    Not long after I recovered from my spring respiratory infection, my left ear started aching slightly, not like an ear infection but more like there might be an ulcer where my ear canal and throat meet. Dr. Bahrani could see nothing about 10 days later when I went for my checkup. He said to see my ENT if the problem didn’t clear up within a week. I saw my ENT on July 24. My ears looked clear so he ran a small scope through my nose (ugh) to get a better look at my throat. He observed a small red raised spot on the base of my tongue. A CT scan on the 27th showed nothing remarkable and a follow-up exam on August 3rd showed no change. I conferred with my transplant doctor via email. He doesn’t seem worried and thinks it’s probably not related to my MDS or transplant.  

    My ENT says the spot doesn’t look malignant but he still thinks it would be best to remove and biopsy just to be safe. Because of the location, this will require general anaesthesia. Therefore, I’ve scheduled the procedure at the local outpatient surgery center on August 28th. I had my pre-surgery physical last Monday ( EKG, blood pressure, blood work) and everything looks fine:

    August 13, 2012
    WBC: 8.4 (norm 4.0-10.5)
    ANC: 3.9  (norm 1.8-7.8)
    Platelets: 470 (norm 140-415)
    RBC: 4.71 (norm 3.77-5.28)
    HGB (hemoglobin): 15.4 (norm 11.1-15.9)
    HCT (hematocrit): 45.2 (norm 34.0-46.6)
    Bilirubin: 0.7 (norm 0.0-1.2)
    Alkaline phosphatase, S: 131 (norm 25-150)
    AST: 30 (normal 0-40)
    ALT: 24 (normal 0-40)

    For some reason, I feel a lot of apprehension about having the surgery, minor as it is. There’s the natural fear that the biopsy will show cancer but beyond that, I guess I’m worried about “stirring something up” at this stage. The tongue and throat are very critical areas for quality of life – talking and eating are important! What if I don’t heal properly or it takes a long time to heal? What if it gets infected? What if the spot is GvHD and the biopsy inflames it further? I’m still ultimately optimistic about the outcome but can’t help feeling nervous at the same time. I never used to be such a worrier.

    I saw my ophthalmologist, Dr. Akpek, at Wilmer on August 9th. My vision is frustratingly blurry from the dryness but I still test at nearly 20/20 with my glasses and much blinking and squinting. I’d rather see more crisply than pass a test. At least there’s apparently no further damage from the GvHD/dry eye. The resident, Dr. Koo, suggested small plugs in my tear ducts to help with the dryness. I resisted initially but she assured me they are very simple to insert with a good chance of helping so I agreed. After a couple of numbing drops, the insertion was as easy as promised. If she hadn’t told me what she was doing, I’d never have guessed she’d put them in. I can’t feel them at all, and they’re essentially invisible. The best part is that the plugs do help! Although my eyes still feel dry, my vision sharpened mere hours after insertion. The plugs work by keeping the little moisture I have from draining out of my eyes. I’m supposed to continue using Restasis and return for a check-up in six months. I don’t like the Restasis drops. They make my eyes sting and hypersensitive to light. The only time I’m able to use them is right before I go to sleep for the night. My ophthalmologist would like me to use them more frequently but their use is mutually exclusive to my being functional!

    The spot of skin GvHD in the middle of my back has grown larger although still isn’t too bad. My joints have been achy all over but especially in my hands, possibly a bit of GvHD there as well. I keep reminding myself that a little GvHD is a good thing to keep the leukemia away.

    I continue to need intermittent Acyclovir to keep the herpes in check and Previcid for acid reflux. I’m thrilled to have avoided immunosuppressants and steroids thus far (knock wood, as Dr. Bahrani would say).

    I’m still having problems with the seborrheic dermatitis on my face, head, and ears. The doctors say it is unrelated to my transplant but I tend to disagree based on the following info from Wiki: 

    “Genetic, environmental, hormonal, and immune-system factors have been shown to be involved in the manifestation of seborrhoeic dermatitis. Seborrhoeic dermatitis may be aggravated by illness, psychological stress, fatigue, sleep deprivation, change of season and reduced general health. Those with immunodeficiency are particularly prone to it.”

    Whatever the cause, the itchy red bumps grow tiresome. Although it’s wonderful that I’m feeling great, I want to look in the mirror and see a healthy looking person, too, not someone with irritated red eyes and blotchy skin. Yes, I am greedy!

    Speaking of appearance, I got a couple of new wigs (buy one, get one free :-)), a short boy cut for summer and a long curly one for a change of pace now and then. There are photos in Gallery 2.

    Guess that’s it on the health front for now. I’ll post an update after I get my biopsy results next month. Although I may sound rather grumbly, my complaints are all small, and I’m thankfully feeling very well with spirits high!

    Day +571: Here he is, girls, the leader of the plaque…

    6/23/12: Greetings and welcome to summer. It arrived full force here last week with temperatures above 100F and high humidity. Ugh. However, I don’t want to wish my time away, and winter will arrive again with the blink of an eye.

    The good news is that I finally recovered fully from my respiratory infection a couple of weeks ago. Overall, it lasted about six weeks. My ears were badly clogged after flying, and the resulting partial deafness made for some amusing conversations, reminiscent of the old “another case of bad cellular” radio ads. I was feeling pretty disheartened and worried about my immune system until I discovered that a few of Michael’s coworkers with “normal” immune systems took just as long to get over [apparently] the same virus. I don’t wish anyone else ill but I was uncharacteristically pleased with the news that they’d suffered equally long. Although I’d ordinarily celebrate my differentness, I’m happy in this case to be among the “normal.”

    My six month checkup with the dentist on June 20 went very well. My mouth isn’t as dry, and I had no new cavities. I was rewarded with a purple and pink princess toothbrush.

    No hematology appointments in June – Michael and I are experiencing withdrawal, fretting about the unknown.

    I’m usually not much of a worrier but lately, I’ve gone through a phase of anxiety over every little anomaly: Where did that bruise come from? Why is my heart pounding? Am I more easily winded than usual? Why am I so tired? Why do my legs ache at night? How did I lose weight when I’ve been eating so much? I suspect anyone who has ever had cancer is never entirely free from the fear that it has returned.

    Then there are the worries over the dangers of chronic graft versus host disease. The recent death of fellow transplantee Sharon Julihana due to complications from GvHD is a sad reminder that it can be as deadly as the cancer itself. But as I follow the journeys of other transplantees, I am enormously thankful that I’ve fared so well. My health and quality of life are excellent and the new immune system from my hero, Mary Lou, truly seems to be the perfect match in every sense. Repeating the words of my hematologist, Dr. Bahrani, I probably have just the right amount of GvHD, enough so that I gain the graft versus leukemia effect but not so much that my health is dramatically affected. Hurray for me!

    Closing on a lighter note, a tagline update (none of which were IDed):
    Day +504: High Hopes, Frank Sinatra
    Day +533: I’m So Excited, The Pointer Sisters
    Day +537: Reunited, Peaches & Herb
    Day +539: Suite: Judy Blue Eyes, Crosby, Stills & Nash
    Day +541: Vacation, The Go-Go’s
    …………………Willkommen (from Cabaret), Joel Grey

    Day + 541: Vacation … All I ever wanted…

    “Vacation … Had to get away…”

    Wow, well we are back home and recovering from the whirlwind tour – Ok, a little helicopter reference early. However, this has been a wonderful time for both Karen and me. In a way, it is hard to believe that we are doing something normal, as what other people consider normal. The trip to meet Karen’s donor, Mary Lou, and her family was made even better by a great stay on the Colombia river in Astoria, Oregon. The Helicopter ride to the crater of Mount St. Helens was spectacular! However, all of the remains of blown over trees reminded me that Karen is still not out of the woods. She started battling her first ‘flu’ before the trip, and yesterday she spent time getting X-rayed, cultured, and issued a second regimen of antibiotics (Levaquin this time). Just like on the mountain, things are fragile, but life is beautiful. I suppose the nagging feeling will always be there, that little doubt, that this ache, pain, etc. is not just routine. I’m not trying to be pessimistic (my basic nature), but the primary target audience for Karen’s Blog is people on a similar journey; so we do try to show what is going on both physically and emotionally.

    However, back to the great vacation! All ‘great’ vacations must have a few days in Estes Park, Colorado! The mountains? The forest? The shops? The food? The activities – ok if you fall for that one, you really have not paid attention to this Blog. It’s the Chipmunks!!! We have hundreds of pictures of many generations of Colorado rodents. Why did we save that picture – oh, a tiny rock with a tail in a shot of vast mountains (a version of “find Chip or Dale”). Maybe, it may have something to do with Colorado being the place where we decided to get married.

    Now we are relaxing / recovering at home with the Memorial Day holiday ahead (and only limited checking in on work).

    Undoubtedly, the most important thing for this vacation is meeting Mary Lou! THANK YOU!

    See Gallery 2 for photos!

    Michael

    Day +539: Thrill me to the marrow…

    Today’s tagline is stolen (wish we’d thought of that one ourselves!) from the terrific article written by Cathy Zimmerman of The Daily News in Longview, Washington. Bill Wagner captured a lovely photo of Mary Lou and me to go with the story, linked here.

    Thank you, Cathy and Bill!

    Day +537: Reunited and it feels so good…

    “There’s one perfect fit and sugar this one is it.
    We both are so excited ‘cuz we’re reunited, hey hey….”

    Mary Lou and I were “united” for the first time on November 30, 2010 when I was infused with 1342 ml of her life saving bone marrow. We finally met face to face nearly 18 months later on May 16, 2012. It’s hard to say which of us was more excited with ear to ear grins, bone crushing hugs, and instant rapport. It was a fantastic afternoon all the way around.

    Michael and I first visited with Mary Lou and her husband, Jeff, and her adorable snoodle, Lucy, for a couple of hours, enjoying the perfect weather and breath taking view of the Columbia River from the deck of their beautiful home. We exchanged stories and photos, both eager to know every detail of our respective experiences with the donation.

    We then had the honor of being interviewed by Cathy Zimmerman, features editor for The Daily News of Longview, Washington. I can’t wait to read her story!

    We finished off the day with a pizza party with Mary Lou’s extended family, all of whom were eager to meet me. Everyone was warm and welcoming, and I instantly felt comfortably at home. It was very much like the family gatherings at our place (except for the food). The pizza was, without exaggeration, the best I’ve ever had. Mary Lou hand tossed her own special recipe dough, and we assembled the pizzas with different combinations of the wide array of available toppings. Jeff transported these culinary delights to their custom built outdoor, wood burning pizza oven where they baked to perfection. Sadly, although I’ve apparently inherited Mary Lou’s sweet tooth, I failed to gain her extraordinary talent for cooking. It’s difficult to imagine a more perfect day.

    Thursday, we drove to Mount St. Helens. Michael surprised me with a helicopter tour. It was the day before the park officially opened for the season, and we had the pilot, Darren, and aircraft, a shiny new red Eurocopter, all to ourselves for an hour of spectacular views and interesting narrative. Once again, the weather cooperated beautifully. We finished the day with a Bosnian feast of cabbage rolls, lamb, fresh fruit, and Turkish coffee at the Drina Daisy in Astoria.

    Friday, we visited the Maritime Museum and the local sea lions before meeting Mary Lou for dinner at The Bridgewater Bistro near our hotel. We had another good visit during and after dinner and parted with promises of staying in touch and meeting again.

    Yesterday was another travel day. We flew to Denver via Salt Lake City and drove to Estes Park with a stop for dinner along the way at an old favorite German restaurant, The Black Bear. Sadly, the place is for sale after 35 great years. I can hardly believe it’s been nearly 28 since Michael and I ate there the first time.

    It truly has been a wonderful vacation. My only disappointment is this nagging respiratory infection which seems to have settled in my sinuses and chest. It hasn’t stopped me from doing anything I wanted, but I wish I felt better. My raspy cough is also embarrassing in public places. Flying was particularly unpleasant with all the pressure changes. We’re taking it easy today, emerging from our cozy mountain cabin only long enough for our traditional Sunday brunch at the famous (from The Shining) Stanley Hotel. I’ve been in contact with both my hematologist and my transplant doctor via email, and they believe I’ve picked up the virus that’s going around and should be fine without medical attention until I return home Tuesday night, as long as I’m having no fevers or shortness of breath. That being said, I think it’s my nap time!

    p.s. I’ve discovered the Photo Dump app which allows me to upload photos easily from my iPad. I created Gallery 2 and added more photos. There’s no option to change the sequence once they’re uploaded so the photos are somewhat out of order.

    Day +533: I’m so excited…

    “…and I just can’t hide it.”

    It’s been a busy month since I last posted. Work on our kitchen continued two weeks beyond the scheduled three week completion and is still not quite done yet. However, we were able to mostly move back in the day before our annual Mothers’ Day gathering. The weather cooperated, and we had a very pleasant afternoon with our families, a total of 18 in attendance including us. We feasted on steamed crabs, bbq ribs, and an assortment of delicious sides and desserts supplied by our guests.

    The kitchen is looking great, and it’s so much more functional with the added storage. The finishing touches will be added when we return from vacation next week.

    In the midst of remodeling and preparing for the party and trip, I managed to catch my first post transplant respiratory infection, disappointing timing to say the least! I thought it was nearly gone but it worsened over the weekend. When I went for my routine bloodwork Monday, Dr. Bahrani prescribed Zithromax antibiotics which I started immediately. My blood counts continue to look good. The whites are elevated, a sign that they’re doing what they’re supposed to, fighting my infection. My liver enzymes are all in normal range!

    May 14, 2012
    WBC: 11200 (norm 3000.-11200.)
    Granulocytes (~ANC): 7600 (norm 1400.-9000.)
    Platelets: 365 (norm 130-382)
    RBC: 4.37 (norm 3.90-4.90)
    HGB (hemoglobin): 14.7 (norm 11.5-14.3)
    HCT (hematocrit): 44.1 (norm 34.2-42.2)
    Alkaline phosphatase, S: 147 (norm 25-150)
    AST: 36 (normal 0-40)
    ALT: 29 (normal 0-40)

    I took a Benadryl before bedtime, and it really knocked me out. Our long awaited journey to meet my donor began [not so] bright and very early yesterday morning. I fared well, all things considered, but I was completely exhausted by the time we reached our hotel in Astoria, Oregon yesterday evening. I noted our beautiful room and view at the Cannery Pier Hotel, snapped a few photos, and napped for a couple of hours. We went to dinner at a local seafood place, The Silver Salmon, chauffeured by a distinguished gentleman named Spencer in a 1952 Cadillac. Freshly baked cookies awaited us upon our return to the hotel. I think I was fast asleep again within minutes and slept soundly through the night, much refreshed upon awakening.

    Just a few more hours until we finally see Mary Lou face to face for the first time! I’m both a bit nervous and extremely excited, so eager to meet and thank her but worried that I might disappoint. Nothing I say or do can adequately express my gratitude for her amazing gift of life. My perfect match!

    I’ll write more soon, after the big event, and post some photos.

    Day +504: Keep those high hopes…

    “Keep those high hopes, keep those high-apple-pie-in-the-sky hopes….”

    Wow, it’s already been more than 500 days since my bone marrow transplant. One month from yesterday, we get to meet my donor Mary Lou and her family in Washington. I can’t wait!! It will also be our first post-transplant vacation. We’ve so much to look forward to in the near future, including a visit from our friend Heather next weekend and a visit from our friends Mike and Cindy in June.

    Now that spring has officially arrived, I’ve let go of my winter dreams and am reveling in beautiful shades of the new greens, pinks, and yellows so much in abundance this time of year. Our daffodils and single tulip are gone, and our azaleas are blooming.

    I had my monthly blood work yesterday, and everything continues looking good:

    April 15, 2012
    WBC: 7200 (norm 3000.-11200.)
    Granulocytes (~ANC): 3900 (norm 1400.-9000.)
    Platelets: 369 (norm 130-382)
    RBC: 4.57 (norm 3.90-4.90)
    HGB (hemoglobin): 15.3 (norm 11.5-14.3)
    HCT (hematocrit): 46.4 (norm 34.2-42.2)

    Work began on our kitchen last week and is supposed to be completed by the end of next week. I expected the ensuing chaos to be unbearable but so far, it hasn’t been bad at all. Surprisingly, we were able to move the fridge and dining room table and chairs into the living room temporarily without moving out any of the living room furniture. The toaster oven, grill, and microwave are adequate for cooking, and the cats are actually enjoying exploring the new layout. We’re eager for the work to be finished and nervous about the final results but otherwise managing just fine.

    We filed our tax returns late last week, days before the deadline…whew.

    In other news, I traded in my long ashy brown wig and got a new short auburn one at the American Cancer Society last week. They provide free wigs to cancer patients and survivors. Michael and I both love the basic color and style but the wig is not as high quality as my silver one – the color looks too uniform and the part looks a bit “wiggy” by comparison. I’ve decided to return to the shop where I got the silver and buy a similar one in red. My consultation is Thursday. It will be fun to change colors and/or styles back and forth so easily. After many years of hair dyes, I can really appreciate the convenience. Who knows how many I may end up with, lol.

    Sorry I’m so behind on posting photos. With my iPad, I’m rarely on my computer anymore. I need to set up my albums differently so I can upload pics from the iPad instead.

    My friend Chris and I continue to enjoy our weekly movie nights. We finally watched Temple Grandin, recommended by Cathy, and it was excellent. We also watched Bridesmaids and enjoyed some good laughs along with some surprisingly touching moments. Our most recent watch, The Spiderwick Chronicles, was just so-so. Next week, we’ll probably go out to see The Hunger Games. Keep those recommendations coming – I’m always looking for something new.

    Today’s tagline is from my Story of Hope (linked here) published on the Aplastic Anemia and MDS International Foundation site last month. I was flattered to be invited and happy for the opportunity to contribute.

    Day +479 Tagline
    Crazy, Patsy Cline (IDed by Chris)

    Day +479: Crazy, I’m crazy for feeling so lonely…

    “I’m crazy, crazy for feeling so blue…”

    I started writing this post after my doctor’s appointment on Monday, and the tagline was meant to be a joke because Dr. B didn’t want to see me again for another 4-6 months, i.e., he rejected me in favor of more interesting patients, ha ha. My counts are looking excellent.

    March 19, 2012:
    WBC: 6200 (norm 3000.-11200.)
    Granulocytes (~ANC): 3000 (norm 1400.-9000.)
    Platelets: 332 (norm 130-382)
    RBC: 4.24 (norm 3.90-4.90)
    HGB (hemoglobin): 14.5 (norm 11.5-14.3)
    HCT (hematocrit): 43.1 (norm 34.2-42.2)
    Alkaline phosphatase, S: 157 (norm 25-150)
    AST: 30 (normal 0-40)
    ALT: 31 (normal 0-40)
    Ferritin: 605 (normal 12-150)

    The truth is I have been feeling a bit blue and curmudgeonly this week with an especially low tolerance for [melo]drama. I guess it’s a good thing I don’t watch soaps. I’ve also been cranky about everyone’s excitement over our early spring. Am I the only one who likes winter and snow and am thus very disappointed that we had only a dusting this year? Even as a child, I never liked summer. We haven’t had any rain in awhile either. I like the peacefulness of dark, rainy days. Speaking of darkness, and while I’m on a rant anyway, I hate daylight savings time, too. Why must we muck with the time? The number of hours of daylight doesn’t change when the time is shifted in either direction! It’s supposed to be light in the morning and dark at night. You can imagine how well I fared with Alaskan summers, lol. My post transplant sensitivity to light has underscored the fact that I am a night person through and through. Okay, enough complaining, at least for now. I’m sure it’s a sign that I’m cured when I’m annoyed by minutia!

    And now for some good things, besides the great check-up, that happened this week: I got the new iPad, and it’s lovely – faster, sharper, and brighter than the old. The preorder came with free engraving. I chose:

    Mausi
    High Hopes, 11/30/2010

    Mausi is Michael’s nickname for me, High Hopes is a musical tagline, and 11/30/2010 is the date of my rebirthday.

    This week, we also had a nice family get together at my sister’s for my grandniece’s 21st birthday. She has a new baby, so five generations were there! I guess that makes me a great great aunt (but we knew that already :-)).

    Sunday, we’re returning to The Dupont, this time with our friends, Chris and Lynn, for brunch and a production of Lord of the Dance. It will be our final show there for the season. We didn’t get tickets for next season because there wasn’t much we were interested in seeing. Maybe we’ll find something good in Baltimore instead.

    Day +461 Taglines:
    Shot in the Arm, Wilco (no one IDed)
    Big Shot, Billy Joel (no one IDed)

    Day +461: Maybe all I need is a shot in the arm…

    Greetings! Sorry I’ve been a little slow with updating the blog. Also, it looks like the “auto notify” feature for subscribers is broken so that no one was notified of my last post either.

    I went for my checkup and booster shots at Johns Hopkins on February 16. I must be well – they took only two tubes of blood! They’ve never drawn fewer than 10 in any of my prior visits. My blood counts are looking great aside from a slight elevation of my liver enzymes:

    WBC: 6290 (norm 4500.-11000.)
    ANC: 2660 (norm 1500.-7800.)
    Platelets: 352 (norm 150-350)
    RBC: 4.54 (norm 4.00-5.20)
    HGB (hemoglobin): 15.3 (norm 12.0-15.0)
    HCT (hematocrit): 44.2 (norm 36.0-46.0)
    Alkaline phosphatase, S: 211 (norm 25-150)
    AST: 85 (normal 0-40)
    ALT: 75 (normal 0-40)

    I also received the following booster immunizations:

    • Diptheria/Tetanus
    • H. influenzae type b conjugate [bacterial meningitis]
    • Hepatitus B
    • Inactivated polio

    I got two shots in each arm. A bonus tune comes to mind: “You had to be a big shot, didn’t you?” Both arms were extremely sore for the next several days. I feel sorry for babies going through this, not even able to comprehend what’s going on, knowing only that someone is hurting them.

    The best news was that my next appointment with the transplant doctor isn’t until my two-year checkup on December 2! In the meantime, I’ll continue getting regular blood draws with my local hematologist just to keep a close watch on everything.

    We finally chose a kitchen contractor last week, and work is scheduled to begin the first week of April. I’m not looking forward to several weeks (if all goes well) of chaos and construction but the end result should be nice.

    Disappointingly, it looks like our winter is about done here with essentially no snow this year. It’s chilly but none of the white stuff is forecast for the next 10 days. Snow later than that is very uncommon here. That’s probably good news for most of you who are looking forward to spring – I know I’m in the minority. I do admit it will be great to see the greenery and flowers replacing all the browns and greys.

    I’m sure Michael is eagerly anticipating warmer weather for riding his new “little red bike” – a carnival red Triumph Thunderbird SE motorcycle he got last weekend. We took the older, larger Rocket III in for service and ended up trading it in for a newer, smaller one instead.

    This weekend, we’re looking forward to returning to The Dupont Theatre with my sister and brother-in-law for Sunday brunch in the Green Room and La Cage aux Folles starring George Hamilton. It should be fun.

    I was recently asked to write a “Story of Hope” for the MDS and Aplastic Anemia website. I’ll let you know if/when it’s published.

    And now what you’ve all been waiting for, the Tag Line update, lol.
    Day +437: Feelin’ Stronger Every Day, Chicago (no one IDed)

    Day +437: Feelin’ stronger every day…

    A quick update – I had my six month check-up at Wilmer eye clinic yesterday and am doing well. My eyes are still very dry but there are no cracks or erosion. I’m to continue using Restasis and over the counter lubricant drops as well as an ointment at night. My next follow-up is in another six months.

    The dermatitis on my face has been worse lately. I think it is nearly clear and then get a fresh outbreak of itchy bumps. However, if this is the worst I have to suffer, I’m delighted!

    I’m happily eating and enjoying meals again, reveling in my gluttony when something is extra good. I’m trying hard to wean myself from the sweets I’ve become addicted to the past year and move back toward my prior savory preferences. I feel much better when I eat a lot of protein. In fact, I’ve been feeling great with lots more energy! My life is close to my pre-illness norm.

    These days, we’re preoccupied with making decisions about remodeling the kitchen instead of remodeling me :-).

    Last week we saw a live performance of Blast! at the Dupont Theatre in Wilmington, preceded by a delicious brunch buffet in the hotel’s luxurious Green Room. Both were super.

    Thanks for the movie recommendations! Cathy, I got but haven’t yet watched Temple Grandin. Currently, I’m reading Duma Key by Stephen King. Anyone else have book or movie ideas?

    I’ll write more next week after I have my booster shots and check-up with the transplant team at Johns Hopkins.

    Day +420 Tagline
    Movies, The Statler Brothers (IDed by Cathy)

    Day +420: The movies are great medicine…

    “Thank you, Thomas Edison
    for giving us the best years of our lives.”

    I had routine blood work today, and almost everything continues to look good:

    January 24:
    WBC: 5800 (norm 3000.-11200.)
    ANC: 3200 (norm 1400.-9000.)
    Platelets: 351 (norm 130-382)
    RBC: 4.11 (norm 3.90-4.90)
    HGB (hemoglobin): 14.8 (norm 11.5-14.3)
    HCT (hematocrit): 44.1 (norm 34.2-42.2)
    Alkaline phosphatase, S: 190 (norm 25-150)
    AST: 67 (normal 0-40)
    ALT: 68 (normal 0-40)

    My hematologist believes the slight elevation of liver enzymes is due to mild GVHD. I’ll be checked again in a few weeks.

    The dentist filled my two cavities today and prescribed a fluoride toothpaste. I return for a regular cleaning and checkup in June.

    I saw the dermatologist January 9. The CeraVe wash and Promiseb cream are helping with the seborrheic dermatitis, so I don’t need to return for a year.

    The only prescription med (aside from the topical cream) I’m taking currently is Previcid for acid reflux several times a week. Life is returning to normal!

    What prompted this week’s tag line? I saw The Girl with the Dragon Tattoo last week. Wanting to know more details, I’ve been reading Steig Larsson’s trilogy this week on my Kindle. These are not literary greats but are definitely page turners. I usually like books better than their film counterparts but this time, the film followed the book very closely, although the answer to the central mystery was changed somewhat. I suspect the change was made to keep the film from being too long and did not affect the story in any bad way.

    For me, both books and movies are great medicine. We have a huge DVD collection, and my friend Chris and I have movie night every week. This week we’ll probably watch the original Swedish versions of the Larsson films. Recently, we’ve been enjoying the BBC television series, Merlin. If you have any film or book recommendations, please include them in your comments or send me an email!

    Tag Lines…
    Day +401: Holding Out for a Hero, Bonnie Tyler (although I was thinking of the Shrek version by Frou Frou), (IDed by Sarah)
    Day +409: Hello Mary Lou, Ricky Nelson (IDed by Greg)

    Day +409: And though I never did meet you before…

    “I said, ‘Hello, Mary Lou
    Goodbye heart
    Sweet Mary Lou
    I’m so in love with you

    I knew Mary Lou
    We’d never part
    So hello Mary Lou
    Goodbye heart'”

    Michael and I are very excited! I’ve been corresponding with my donor, Mary Lou, all week. She’s a delightful person, as I knew she must be. We’re flying to Washington state to meet her and her family in May, so I’ll finally be able to thank her face to face. In the meantime, we’ll continue to be in touch. Getting to know each other is both interesting and fun! Words can’t begin to describe how I’m feeling.

    Mary Lou has kindly given us permission to post her comments about being a donor:

    “My [bone marrow] donation experience was wonderful – I received so much support from every person that I encountered throughout the process. I live in SW Washington – our home is actually on the Columbia River which borders Washington and Oregon so I’m about as far south in the state as you can go!  I had to go to Seattle, which is about 3 hours away, on 3 separate occasions for screening, pre-op and the procedure.

    “The procedure itself was uneventful. Post-op, I recovered very nicely. I anticipated that it would be extremely painful and was pleasantly surprised that it was not as bad as I feared. It took about a month or so for me to return to my normal energy level. I would do it again in a heartbeat, and have encouraged everyone I know to sign up for the donor registry.

    “My husband and I had signed up about 5 years before I was called as a potential donor. I couldn’t believe how easy it was to get on the registry – just provide a cheek swab and you are good to go! I honestly don’t understand why anyone who is able, would not sign up to be on this registry. The discomfort/inconvenience a donor goes through is nothing compared to the gift that they can give. Many people I knew were skeptical about me doing this and would say, ‘I could never do something like that,’ and that is just so hard for me to understand.”

    If you’d like to join the NMDP (National Marrow Donor Program) registry and potentially save someone’s life, please visit the Be The Match website. There’s a link in the lefthand column under Useful Info.

    Day +401: I’m holding out for a hero…

    “Where’s the street-wise Hercules
    To fight the rising odds?
    Isn’t there a white knight upon a fiery steed?
    Late at night I I toss and turn and dream of what I need
    I need a hero
    I’m holding out for a hero ’til the end of the night”

    I just received wonderful news from Johns Hopkins – contact information for my donor! I’m emailing my hero now to thank her a million times for saving my life.

    Happy New Year, everyone!

    Tag Lines…
    Day +373: DNA, Jonathan Coulton (no one IDed but Tim made a valiant attempt)
    Day +387: Almost Cut My Hair, Crosby, Stills, Nash & Young (IDed by Mike…sort of)
    Day +396: Someone Keeps Calling My Name, Harry Chapin (no one IDed)
    Day +396 rejected: My Wife and My Dead Wife, Robyn Hitchcock (no one IDed – based on the lack of comments on his New Year post, Michael says there must not be any Robyn Hitchcock fans out there ;-) )

    Day +396: Someone keeps calling my name, my name…

    “…My name is Jonathon, I’m fifty seasons old
    I say it that way ’cause I love
    the changes each year holds
    But as I look around I see some changes nature never planned
    I guess it’s time to change ourselves, at least while we still can
    Someone keeps calling my name….”

    The journey continues – yes, there were doubts, tears, fears, pain, sorrow, frustration, boredom, monotony, hope, joy, cheers, happiness, and love. Emotions meant to be felt!

    New Years is a time of reflection as well as looking ahead. First and foremost, to all who are on the same journey as Karen: we wish you a great 2012 and hope to share experiences and both small and large victories ahead.

    Thank you to all for the support, encouragement, and sometimes just a different perspective.

    This December 31st Tagline may not be as emotional as the theme from ‘Rent’. However, it does reflect Karen’s striving to have life be ordinary and to enjoy the simple things like bread. Normalcy. We have gradually gotten used to the idea that blood counts really don’t have to be done daily…every other day, weekly, or even monthly. Cancer and GvHd are never far away, but they are not consuming or haunting each moment.

    I still plan to do a list of rejected taglines (songs) – although they may have accurately captured the mood of the moment, we often went for a softer delivery. Ok, for the curious here is a prime rejected tagline example: “… My wife and my dead wife, Am I the only one that sees her….” Yup there was lots more stuff like that one last year.

    Lastly, I am going to shift this a little to pass a big THANK YOU to our Soldiers, Sailors, Airmen, and Marines for their service.

    Best wishes for the New Year!
    Michael and Karen

    Day +387: Almost cut my hair…

    “It happened just the other day
    It was getting kind of long
    I could have said it was in my way”

    2011-12-14beforehaircutsOkay, not almost. As you can see in the “before” photo, my hair was just plain wild…so I got it buzzed on December 14, more than a year after my last haircut. My “after” pic is in the gallery. All of my doctors are in agreement that my hair probably will not ever be much thicker than it is now, so I’m seeing lots of caps and wigs in my future. I readily admit I miss my hair but recognize it’s a small price to pay in exchange for my life. Still, I’d rather have both (along with all of my brain cells intact, self-hydrating eyes, and fully functional salivary glands). Just call me greedy. By the way, for readers who have an SCT or BMT in their futures, permanent hair loss is not common. It’s more common to have changes in color or curliness.

    After the haircut, I finally ordered new glasses. My prescription was already 4 months old. The new glasses are almost like the old except a bit smaller. They should be ready next week.

    These small tasks somehow feel larger and more significant, in a good way, than I expected. Paradoxically, their significance lies in their fundamental ordinariness. I’ve not had any debilitating physical impairments for many, many months but I’m finally moving forward mentally, past my illness and resuming normal (delightfully mundane) life as I knew it before my MDS diagnosis.

    Another milestone – after Thanksgiving, I eliminated the dietary supplements from my morning milkshakes (the mainstay of my diet for the past year). In case you noticed a recent drop in Häagen-Dazs stock, as of December 10 I resumed eating all “regular” food with no milkshakes at all.

    December 15, I had my 6-month dental check-up. Unfortunately, my enamel is eroding, and I have two new cavities at the root line underneath old, large fillings, most likely due to my severe dry mouth. The old fillings will have to be removed to do the new ones so I see a lot of money going to my dentist next month. I hate getting dental work. It isn’t especially painful but the sounds and vibrations drive me crazy, admittedly a short trip.

    Speaking of oral issues, I tried the steroid rinse for a few days. It tasted terrible with a lingering aftertaste and made my mouth a little sore. I worried about upsetting the balance and improvement I’d achieved and consulted with NIH and Hopkins doctors via email. They were in agreement that I should discontinue the rinse and continue doing the acupressure. The NIH dentist, after conferring with her colleagues, said that the rinse might not be that beneficial for me anyway since not much would be absorbed in the salivary glands where I need it.

    I saw my local hematologist, aka my favorite doctor, on Monday. My blood counts are very good:

    December 19:
    WBC: 5100 (norm 3000-11200)
    ANC: 2800 (norm 1400-9000)
    Platelets: 284 (norm 130-382)
    RBC: 4.11 (norm 3.90-4.90)
    HGB (hemoglobin): 14.5 (norm 11.5-14.3)
    HCT (hematocrit): 42.3 (norm 34.2-42.2)
    Alkaline phosphatase, S: 215 (norm 25-150)
    AST: 54 (normal 0-40)
    ALT: 48 (normal 0-40)

    Dr. B says it will take several months for the Vidaza to be completely out of my system and to determine my new baseline. He commented again how remarkably well I’ve done. I replied that I give him a large part of the credit for my current well being. Beginning with my first meeting with him in January 2010 and continuing throughout the process, he made the right decisions regarding my treatment. He biopsied me right away and referred me to University of Maryland where I could be seen by a specialist within days instead of waiting weeks to get in at Johns Hopkins. He conferred with my oncologist at Maryland and oversaw my Vidaza treatments. He always treated me with kindness and respect and answered my endless supply of questions patiently, frankly, and intelligently. He encouraged my consulting with multiple facilities prior to choosing one for my transplant. He took the time to read and discuss research papers I got from other sources. He replied to my emails quickly and succinctly. He clearly understood and sympathized with my fears and doubts. He never downplayed the seriousness of my illness but remained ever hopeful. He gave me good advice (better than that of my transplant doctor) for staying well while awaiting engraftment and beyond. He prescribed medications and gave medical direction sensibly. He wasn’t afraid to confidently convey his own opinions, including his reasons, but knew his boundaries and referred me back to my oncologist or transplant team when appropriate. He was never too busy to chat informally about everyday things that had nothing to do with illness – books, films, electronics. He listened. He cared. My next follow-up with him isn’t until mid-March. I’ll miss him.

    Michael commented that I have Dr. B high on a pedestal. I guess that’s true. After reading and hearing the stories of so many others, I realize how differently everything might have turned out if I hadn’t received such good care from him and my other doctors, especially in the beginning when I knew so little, and critical decisions had to be made. Many others have not been so fortunate.

    Both Michael and I will need time to adjust to seeing my blood counts far less frequently than twice a month. They’ve simultaneously been our yardstick to measure progress and our lifeline to sustain hope.

    Yesterday, I saw my dermatologist. She believes the itchy bumps on my face and ears are seborrheic dermatitis. The cream prescribed by her PA last time isn’t helping so she’s trying me on a different one with follow-up in a few weeks. She loved my shoes, the purple “oil slick” Danskos I got last year :-).

    I’ll probably finish my physical therapy next week.

    As always, I love my iPad. I’m also enjoying my Kindle and getting accustomed to my iPhone. The tiny screen on the phone is hard on my eyes, and Siri doesn’t seem to understand me as well as my old phone did, but I do like the smartphone convenience for email, calendars, and surfing. It sure is a lot less weighty than carrying around the iPad.

    I’ve started a new album in the photo gallery for the coming year and posted some snapshots. I need to post some more from October and November but that will happen another day.

    Guess that’s it for this week’s news. Happy Holidays, everyone!!!! We have much to celebrate.

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