Tuesday, July 17, 2012

Mick McKellar Update -- Day +513

Smiling in the shade at Mt. Olympus
It seems I am destined to remain forever out of step with the latest fads and current styles. Just as so many are gearing up for a fabulous fright over the end of the world on December 21, 2012, I am finally focusing on the wonder and promise of each new day and the joy in just waking up and discovering I am alive. Oh, there are plenty of reasons...excuses, actually...to be upset with my situation. Although Philadelphia chromosome positive, chronic myelogenous (or myeloid) leukemia (CML) is not exactly rare (1-2 people, per 100,000 contract CML, and the only well-described risk factor for CML is exposure to ionizing radiation — no, I was not at Hiroshima in 1945), I beat those odds when I found it, or it found me. Not only that, but also to contract a strain resistant to imatinib (Gleevec) demonstrated mighty luck of the disagreeable and detrimental sort — especially when my CML seemingly skipped the advanced stage and went directly to the third and final stage: blast crisis. When four courses of chemotherapy failed to stop the beast, we chose to risk a blood and marrow stem cell transplant.

But, that is old news...

Over the 513 days since I received my brother Kevin's stem and T-cells, I have attempted to chronicle the complex relationship between my body and his blood. The transplant was a success and I remain in remission — with the help of teams of doctors and some very powerful medications. Each day brings either new or ongoing symptoms. Most of the medications I take are to treat the side-effects of other medications or Graft versus Host Disease (GVHD, where the new organ, the new T-cells, reject my body by attacking parts of me). Regular blood tests monitor my hematologic health and currently look pretty good. However, Kevin's Tennessee T-cells have not agreed to live quietly in a Yooper body. The latest manifestations of their disquiet include:
  • The Neverending Skin Rash — almost gone, but forever there — ready to flare
  • Some eye problems, including an worsening cataract in my right eye, and early stage dry macular degeneration in both eyes
  • Peripheral neuropathy in hands and feet — progressive loss of sensation and control
  • Splayed in the shade...
  • Loss of >50% of my lung function — decreases in both capacity and oxygen levels — currently unexplained — all diagnostic tests negative
The most distressing and limiting has been the breathing problems. It appears my childhood bronchial asthma demon may have joined forces on the dark side — with my new nemesis, GVHD — causing extreme shortness of breath, even when pursuing chores as simple as washing dishes or carrying a bag of groceries from car trunk to kitchen table.

Of course, I remain immune-suppressed, hyper-sensitive to sunlight, and tired (very tired). Yet, these are the risks with something as drastic as a BMT. Most BMT patients succumb to the effects of the treatment, not the disease after transplant. I accepted that going in, and I am extremely grateful for each and every day after transplant, days I would not have had without my brother's Gift and God's grace.

Then there is human bureaucracy...

...one of the few constants in the known universe. Let me step back to yesterday, day 512 after transplant.

I must admit, I did not fancy starting my week the way I ended my previous week: on the phone, trying to straighten out my prescription coverage ID numbers and regain access to my online accounts. The story would be funny, were it not so painfully important. I still do not have prescriptions that were ordered for me by my doctor in Rochester on June 28 or 29 — right after our last visit. In fact, thanks to some royal account number mix-ups, the order was held and then stopped. It was restarted only yesterday morning.

It all started with Medicare.

I qualified for Medicare coverage beginning 6/1/2012 — 24 months after my first eligibility for monthly Social Security Disability benefits. Upon this grand change, two things were to happen: First my pension with the Michigan Public School Employees Retirement System (MPSERS) would be adjusted upward because my SSA benefits went down to pay for part B of Medicare. It happens automatically for those turning age 65, but not for those on disability. I did not know I should have filed a form with MPSERS before June 1 to get the adjustment. The only place I know it says to file the form, is on the form itself...I certainly did not received any notification regarding forms to file upon Medicare eligibility. I mailed the form in June (same day I found out about the requirement), but was advised that I would not receive a retroactive adjustment for June...just too bad for me, I guess.

Shortly thereafter, I received a new BCBS card, with a different ID number than my old one, but not what I expected...for I expected to be enrolled in the Medicare Advantage plan. So, I called BCBS. Some very helpful folks at BCBS tracked down the problem: Oops! I had slipped through the cracks — and they would fix it. On the same day, I received my first ID cards from Catalyst RX, the folks who process prescriptions for retirees on MPSERS plans. I now had a second new ID number to use, separate from my BCBS ID number. Oh, joy!

A week or so later, I received a letter and new BCBS cards, this time for the Medicare Advantage plan...and a third new ID number. Now, I think I have the right number — for health insurance and medical. On the same day, I received yet another set of new cards from Catalyst RX, with the same ID number on them. So, I logged into my online pharmacy account to update ID numbers...after all I had two new prescriptions in the pipeline (for nearly two weeks already) and some refills coming due soon.

Friday Surprise!

I logged in and discovered I was locked out of my pharmacy account until I updated my profile. OK — I opened the profile page and entered my new ID numbers. None of them worked AND the system told me that my date of birth was incorrect — only it was correct. After multiple entries in various permutations and combinations with the new ID numbers, I gave up and called the online pharmacy for tech support. Not only was my account messed up because of the ID numbers, but I had TWO ACCOUNTS! One had my name with the "Jr." attached and the other did not have the suffix. When the helpful technician corrected the account, an odd looking claim number (not the Catalyst RX number) popped up. I told him it was not my number — so, he set up the account with the number I received from Catalyst RX. He stopped the processing on my new prescriptions, to restart them when the account updated. I could log in, but it would be some time before I could view my account. This was Friday.

Saturday Surprise!

There was a single envelope in Saturday's postal mail. With trepidation, I tore the envelope open and read, with unbelieving eyes, the notice from MPSERS that I had been enrolled in the Medco Medicare Prescription Plan and advising me that I had another new ID number for my prescription coverage. It was the odd looking number I had rejected on Friday...come back to haunt me. Then, later on Saturday, the specialty pharmacy unit of my mail order pharmacy called to schedule delivery of the next refill for the tyrosine kinase inhibitor medication that helps keep me in remission from my CML. They could not complete the process because my account was still inaccessible.

Monday Results!

Finally, yesterday, after more than an hour on the phone, my account was moved to the correct account number, activated again, and I was able to schedule the delivery of my special medication. They told me the orders for the new prescriptions were restarted again.

Journey to Mt. Olympus

Not everything has been taxing and negative for the past month. From July 8 — July 11, my daughter, Amanda and my son Andrew (and his family) invited us to spend a few days with them at Mt. Olympus Resort in Wisconsin Dells, WI. Although I spent most of my time on the periphery of events, staying out of the sun and far away from the water (and dense crowds of people with children), I had a great time — eating too much, laying about in the shade, and snapping photos with the telephoto lens on my camera. I did get to drive bumper cars (indoors) and go karts — and I went horseback riding for the first time in over 30 years (on a very shady trail along a canyon).

We had a suite with two bedrooms. The others slept in the bedrooms and I slept on the sofa-bed, with the air conditioning turned up full. Everyone was kind about waiting for the old wheezing geezer to catch up, and they came to visit me off in my distant, shady corners of the various theme and water parks at Mt. Olympus. I had a great time, gathering memories and sharing stories.

On that pleasant note, I will end this wild, rambling update and once again thank you all for your prayers and good thoughts. I have no idea what the diagnosis will be regarding this suddenly loss of lung function, nor do I know if the proposed treatment will help (three weeks and I still do not have the medications in hand). I leave those decisions in God's hands and will face whatever challenges may come, as we have learned to face them...one day at a time.

I have missed a couple of days of my 2.5 mile walk, because of breathing difficulties, but will try to resume in a day or so.

Good evening and God bless,


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