MausMarrow

“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.”

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 .

“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 +833 bonus question: performer Gilda Radner and show Saturday Night Live (correctly IDed by Sherry and Michael)

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.)

“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.

Opthalmology

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!

“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.

“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)

“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!

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

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

“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 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!

“(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