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

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

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

Hematology

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

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

Anyway, after phlebotomy we headed upstairs and settled in for an expected anxiety-ridden 45 minute wait. Much to my delight, my very favorite bone marrow biopsy technician, Physician’s Assistant Don, showed up within a few minutes and did the procedure early. As usual, it was uncomfortable but soon finished. Don is incredibly fast and efficient and engages in pleasant personal conversation as a good distraction while he works. Michael photo-documented for me:


Basically, I lie face down on the table. The tech numbs my lower right back with a large syringe of lidocaine and a long needle. Then the tech uses an even bigger needle and syringe to draw marrow aspirate and a small piece of my pelvic bone. The most uncomfortable parts are the two marrow draws. I can feel pain all the way down my leg sometimes and am sore for a couple of days afterwards.

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

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

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

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

Dermatology

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

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

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

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

My next routine dermatology checkup will be in six months.

Life in General

In general, life is good. Aside from some fatigue and nuisance level aches and pains, I feel very well most of the time. It’s been a year of emotional ups and downs. Michael was in two auto accidents – he’s fine but his 18 month old car was totaled in the second and had to be replaced. My eldest grandnephew was in middle school when I was diagnosed with MDS in 2010 – I feared I wouldn’t live long enough to see him grow up but tearfully watched his high school graduation this year. Very emotional! We hosted our annual Mother’s Day party in the spring, not realizing it would be my mother’s last. She died on September 5th, 20 days before her 93rd birthday. She lived a good, long life, and her end was peaceful but it’s always difficult to lose a parent. We vacationed in Rochester, MN and celebrated my friend, Laura’s 5th rebirthday. It was exciting to finally meet my “transplant twin” in person. I returned a few months later for another relaxing and enjoyable visit with her and her family. We unexpectedly lost our youngest cat, Tommy, to kidney disease and learned that another of our 12-year-old cats, Moritz, has advanced heart disease. He’s not doing well. Our cats are our children and we love them dearly. Michael and I celebrated our 30th wedding anniversary with a road trip to New York City in October. We stayed at the Grand Hyatt two nights, walked for miles, ate a lot of good food, and saw a couple of Broadway shows – I love New York. We were sadded by the loss of fellow traveler, Ann Gregory, on November 26th.

I celebrated my 4th rebirthday with my family on November 30th!!! Life is very good.

Happy Holidays, everyone!

5 Comments:

  1. …and the beat goes on… Hi Mausi, love Misch

  2. Now, that’s what I call a Christmas present! Congratulations and God bless!

  3. We got a bit behind. My mom is with me and we colaborated on the song. “I’ve Got You Under my Skin” by Cole Porter. A lot of artists have covered this one. Here it is with Frank Sinatra singing.

    https://www.youtube.com/watch?v=unXfuhmgIyw

  4. This sounds really painful. I am so sorry you have to endure all this pain. But so glad they have the technology to heal you. Bless you!

    I am glad you are able to go on these mini vacations/trips. What exactly is a “transplant twin”? Did she also receive a bone marrow transplant from your same donor?

    So sorry about Tommy and Ritz. They were such sweet cats. But their spirits are still with you. 🙂

    I noticed there was a double tagline. The second one is:
    Frank Sinatra-Here’s That Rainy Day

    Love,
    Cathy 🙂

  5. Cathy, “transplant twin” is a term I coined for my friend Laura because we have so many common issues and interests. Have you heard the expression, “Twins, separated at birth,” referring to unrelated people who are a lot alike? I jokingly told Laura, “We are transplant twins, separated at rebirth!” There is no relationship with our donors, families, etc. we’re just kindred spirits. Karen

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