Mick McKellar Update — Day +523

T.G.I.F. (?)

I always have liked Fridays. When working, Friday marked the end of the "official" work week, bringing a period of accomplishment to a close and sometimes opening a door to a couple of days away from the cares of my regular job. These days, Friday passes with little or no holiday air — perhaps because I no longer have an "official" job — leukemia has become my career and survival my profession. My old jobs defined my life by setting its parameters. In a fashion, my illness, my cancer, my malady defines my life by setting new parameters. It's a 24/7/365 gig and my first vacation will be my last. At least, I get to work at home...

A call about numbers...

The Blood and Marrow Transplant desk (at Mayo) called last night with the results of yesterday morning's blood tests (at Portage Health). Again, the numbers looked pretty good. There were no indicators of problems. Even my blood glucose was behaving itself, coming in at a respectable 97. The latest critical factor, my breathing, lung capacity, and oxygen level won't be tested again until August 16, when we return once more to Rochester for a day of testing and consultations.

Sunday story...

Although it is Friday afternoon, I was thinking about last Sunday morning. I began my "morning constitutional" at 6:20 am (despite a valiant effort to leave 15 minutes earlier). A slow walk on a cool morning, resplendent with a bright blue breeze and bounteous birdsong, should have been an anodyne for all that ailed me. However, I quickly was denied that sunrise analgesic by cockcrow coughing and carbonaceous Canadian air.

Sensing something was amiss, I slowed my gait almost immediately — for some reason the air seemed thicker than normal and had a faint smokey taste. I was unaware of the warnings about smoke stealing down from Ontario's forest fires, so I immediately searched the skies for signs of a local fire or some scofflaw burning rubbish in the open. I labored to no avail — it was imported smog that caused my cough and awakened my wheezing. Still, retaining some intestinal fortitude, or just plain stubbornness, I plodded onward — doing my best imitation of an old, single-piston, steam engine.

By the time I reached the corner of 4th and Hecla in Beautiful Downtown Laurium, I was gasping like a surprised fish out of water. I leaned against the morning cool stone of the Vivian building and waited for my head to clear. Recovering quickly, I let go of the building (It would stand on its own now...) and started toward the intersection. An older, black, pickup truck rumbled to stop in front of me, and a young man leaned out the drivers window.

"Are you OK?" He asked, "Do you need a ride somewhere?"

Caught by surprise and immensely gratified by the concerned look on his face and on the face of his young daughter beside him, I hesitated and rasped out: "I'm fine (cough) just stopped to catch my breath (cough) — thanks for asking." My smile must have mocked a grimace behind my sunglasses and under my floppy sun-hat. He looked unsure for a second, then flashed a quick grin and drove away.

I finished the remainder of my 2.5 mile route with a lighter step and less effort — partially because the rest of the path was slightly down hill toward home and partially because the kindness of that stranger lifted my spirits. The next morning would be the last day I would gasp my way through the route without medication to improve my breathing.

Tough Monday

Monday morning started out tough. The air seemed clear when I left the house — more than a half-hour late — and I had high hopes for a more pleasant walk, minus the labored breathing, wheezing, and coughing from Sunday morning. However, about half-way through my walk, the air seemed to thicken and I was once again gasping. Fortunately, about a half a mile from home, I was rescued by Marian. Driving home from dropping Amanda at work, she pulled over and suggested I might need a ride. I happily complied.

Only 2 miles for Monday...rats!

Things improved Monday afternoon when my new medications, ordered by my doctor in Rochester, MN, finally arrived via USPS from Medco mail order pharmacy. These medications, Advair and Singulair, were prescribed and ordered on June 28, yet circumstances, errors, and bureaucracies on steroids contrived to delay delivery nearly a full month.

I started taking the new medications Monday evening, and I think my breathing has eased.

Like pulling teeth...

Writing updates, a past pleasure and I hope a future joy, has become a momentary challenge. It seems the issue of chemo brain or chemo fog continues to haunt me by locking the doors to my mental kingdom and forcing me to use the windows to get in. I found this list of symptoms on the Mayo Web site:

Signs and symptoms of chemo brain may include:

• Being unusually disorganized
• Confusion
• Difficulty concentrating
• Difficulty finding the right word
• Difficulty learning new skills
• Difficulty multitasking
• Fatigue
• Feeling of mental fogginess
• Short attention span
• Short-term memory problems
• Taking longer than usual to complete routine tasks
• Trouble with verbal memory, such as remembering a conversation
• Trouble with visual memory, such as recalling an image or list of words

Signs and symptoms of cognitive or memory problems vary from person to person and are typically temporary, often subsiding within two years of completion of cancer treatment.

Also see: http://well.blogs.nytimes.com/2009/08/11/coping-with-chemo-brain/

Many of the doctors I see don't openly scoff at this problem, but smile patronizingly and share knowing glances over the issue. I manage to remain fairly high functioning, but only by concerted and extreme effort, using tools that constantly slip and twist in my mental hands. Like an athlete who knows when his muscles are not responding appropriately, I sense the faltering in my mental gymnastics. Let me explain...

Left Brain, Right Brain, Chemo Brain...

For a plethora of distant and even vaguely unimportant reasons, I lived much of my early life inside my own head. I created my own worlds and teased aspects of the "real" world to respond to my rules. What I could not accomplish with innate talent (e.g., singing or painting), I could force by fierce focus and consummate concentration. My memory seemed both phenomenal and inexhaustible. In the sixth grade, using 11th grade Scholastic testing materials, I read 700 words per minute with retention of 98-100%. I became fascinated with words...so many words! If we count distinct senses and archaic words (not in the OED), English approaches three-quarters of a million words. I wanted to know them all...

Enter Limitations

Despite my aspirations, plans, and perorations to family and friends, the modern world held no place for a teenaged Renaissance smart-ass, with self-delusions of grandeur. Smack-downs came early and often — the first of many lessons learned about reigning in the horsepower and keeping it under the hood; about gearing-down and applying torque to projects at once diverse, satisfying to the mind, and gratifying in detail. Life was good inside my head.

Then fences appeared, and my professional life became compartmentalized due to educational, ethical, vocational, political, and physical barriers and boxes. Yet within that framework, I could compose entire documents in my head, reorganize and edit the copy, and type out a nearly final draft — a real time saver. The Rolodex in my head held the data in a searchable format, easy and quick to retrieve — if not entirely complete. I didn't have a photographic memory, but an eidetic one. I could recall images in vivid detail, but might forget our meeting at 2 pm...or even someone's name -- a great memory for a poet.

Of course, as I approached my sixties, there was an image or two blurred or missing data from the Rolodex, but my cache of words remained my pride and joy.

Then came my worst nightmare.

Over the last two years, I have lost the ability to edit entire documents in my head, making it difficult and time-consuming to write and edit. Documents like this update take days to prepare and I find mistakes days later that appall and embarrass me. Word loss and word search have become critical, affecting even conversation. My Rolodex is out of date, perhaps broken. My poetic Muse left town in disgust and seems to be on a long sabbatical...

Most distressing is the change in my personality. I have less patience than earlier and get angry more often — usually through inability to quickly respond appropriately to a new challenge or problem. Communicating feels like sorting dimes while wearing choppers (leather mittens). I have all the concentration and focus of a caffeine-addicted gnat. At least, that is how it feels to me now.

Is it the chemotherapy drugs, the ongoing medications coursing through my veins in a toxic soup, the accumulated stressors of my journey since May 2010, or a combination of all the above? I don't know. I pray it is at least a temporary imprisonment in a smaller, less wondrous mental world. I pray I will get my tools back, all sharpened and organized — and the confidence and wit to use them. I pray that my Muse will return and reopen my ears to the music of poetry, and make fertile once again the barren, dusty, fallow plain in my brain.

I thank all who have read this far. I know it sounds depressing, but it's not as bad as my complaints describe. I am alive. I can think (slowly). I have not lost the will to fight. I have my faith, and God sustains me. And I have all of you, who pray for us and think about us as our journey continues. 523 days so far, and I pray for many more — time enough to crawl out from under the shadow of chemo brain (or whatever it is) and share more of the thoughts and insights that flare suddenly, brilliantly in my mind — and then escape before I can catch them. It is hard to do, wearing mental choppers...

Good day and God bless,

Mick

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,

Mick

Mick McKellar Update — Day +500!

Me, Sandy, Tim, and Kevin

Serendipity — maybe, but in my (never) very humble opinion, it's great that the 500th day since the gift of life from my brother Kevin should also be the birthday of our country. Although I may gasp a bit for breath when singing about today's milestone, it truly feels wonderful to be alive and kickin' five hundred days from my blood and marrow stem cell transplant. It has been only a few short days since brothers Kevin and Tim, Kevin's son KJ, and my sister Sandy visited for a mini McKellar family reunion of sorts. We spent days pouring over old family photos Kevin had been storing since our Dad's death in 2005. When my son, Andrew, brought his family over, three generations of McKellars spent hours sharing and laughing ourselves silly over a game of Apples to Apples. 

I hope I can remember that day...

Sibling Revelry

I had four younger siblings, however in 2003, my youngest brother, Daniel, died from COPD (emphysema). Remaining of my parents' offspring are: me (the oldest), Tim, Sandy, and Kevin. We five all arrived within a span of less than seven years, so we are pretty tight age-wise. Growing up, however, a barrier (mostly of my own construction) grew up between me and my younger siblings. I believe it was partly due to an accident in my crib that injured my hands and feet when I was 18 months old, making my parents especially careful when playing with me...meaning they did not often play and almost never would "rough house" with me as a child. My mother said that, as a child, I was grim — and ofttimes referred to my saturnine face and dark, watchful eyes. At about age 3, I turned to books and pretty much quit playing games, except for flashlight tag and war games in our back yard, using small lumps of clay soil as weapons (like paintball, but without the armor...).

Perhaps the most disconcerting aspect of our evenings during their visit, was to finally hear myself described in their experience as studious, stiff, and standoffish. I guess I was rather self-contained — staying indoors most of the Detroit area summers because of asthma and hay fever — reading books and writing short stories and "sappy" poems. This made it difficult to relate to my extremely active siblings. Still it was magic to reminisce about things we did with (and to) each other. Although I've been telling the stories for years, I was overjoyed to hear them from another point of view. Their visit was a precious gift.

Still Waiting for the Other Shoe to Fall...

My doctor at Mayo Clinic called on Monday. The echocardiogram was normal...I do have a heart, and it does not look any worse than the last exam. Certainly, there was nothing apparent to cause my dramatic loss of lung function. The CT scan of my lungs showed nothing abnormal — no fuzzy clouds of infection, no blockages, no apparent damage. The results from the bronchoscopy were not yet available. They looked around with a camera, did a bronchoalveolar lavage, and a biopsy. I hope to hear something this week to explain why I am so short of breath and why my results on a pulmonary function study showed a nearly 60% loss of capacity and function, compared to my last test, more than two months ago.

My other test results looked great. My recalcitrant GVHD rash seems once again in retreat, though reluctant to retire from the battlefield. My eyes are holding their own, although the cataract in my right eye grows steadily worse — allowing me to view the right side of the world through the bottom of a old, yellow bottle. The neuropathy in my hands and feet remains, although I try to stem the tide with exercise and working about the house. Now, if only I could just carry a bag of groceries from the car without having to sit down and catch my breath, and then find something to mop the sweat from my bushy brow and newly capacious forehead before it drips into my sensitive eyes. 

Is the Intrepid Walker Back?

Perhaps. However, he is much slower than previously. Each morning, beginning July 1, I've walked my 2.5 mile path, as an early morning constitutional. I have to get up by 6:00 AM, and try to get on the road by 6:15 - 6:30 AM. This allows me to walk without worry about excessive exposure to direct (and very, very warm) sunlight. I must walk slowly — it takes me an hour, perhaps 2 or 3 minutes more, to walk the 2.5 miles, because I must stop to catch my breath and my bearings. Early joggers sometimes do a quick double-take at the slow-moving old fart — wearing long-sleeves, floppy hat, and sunglasses — tottering about on the early morning mean streets of Laurium. I say, let them giggle in their tiny shorts, tees, and trainers.

A few weeks ago, a small fellow (about 4 or 5 years old) asked me why I was wearing that hat. I told him it was to keep the last of my hair from blowing away. I could still see his small face, watching silently, as I turned the corner a block away. I think he may have believed me...

Best Wishes...

for a blessed and happy Fourth of July, and a great bundle of thank yous for all the prayers and good thoughts you send us. I must get to bed and try to sleep to the sound of fire crackers and home fireworks exploding in our neighborhood.

Good night and God bless,

Mick