Day +1230: But I would walk 500 miles…

Apr 13th, 2014 by

“…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…

Mar 10th, 2014 by

“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…

Jan 21st, 2014 by

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…

    Jan 4th, 2014 by

    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…

    Dec 31st, 2013 by

    “…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…

    Dec 27th, 2013 by

    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…

    Dec 21st, 2013 by

    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…

    Dec 15th, 2013 by

    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…

    Dec 7th, 2013 by

    “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…

    Dec 4th, 2013 by

    “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!

    %d bloggers like this: