Mick McKellar Update—Day + 1096

Mick McKellar Update—Day + 1096

"Life does not consist mainly — or even largely — of facts and happenings. It consists mainly of the storm of thoughts that is forever blowing through one's head."
—Mark Twain's Autobiography

I haven't written one of these for awhile — the last one was on September 23, 2013 (day +945). I wrote about 60° F weather, light breezes, and enjoying time on the deck (in the shade, of course).

Today, I cannot even find my deck...it is one with a huge snow bank against the west side of my house. The snow continues to fall. The best measure (accurate for Laurium) is the Keweenaw County total, which yesterday reached 260 inches this season. Check it yourself. However, it snowed last night: According to Karl Bohnak (meteorologist at TV 6) they received a notice Laurium (that us) received 4 inches in 90 minutes. It did not continue at that rate all night, but as Marian could tell you, there was plenty to scoop in the driveway after the plow came by this morning.

The Philadelphia chromosome
as seen by metaphase FISH.|

Special Day
I originally planned an excursion for late this afternoon. Today is the third anniversary of the Gift of Life I received from my brother, Kevin. Early in the morning on February 21, 2011, at Rochester Methodist Hospital, doctors and nurses of the Mayo Clinic BMT unit attached a couple of bags to my Hickman Catheter. The bags contained stem cells and T-cells harvested from my brother. They had two jobs: The stem cells were to find my blasted bone marrow (blasted by several days of methotrexate and other drugs) to engraft and restart my bone marrow AND the T-cells were to hunt down and destroy any remaining non-functional while blood cells (i.e., leukemia). It was a disappointingly simple and low-key procedure, and it scared the hell out of me, because there was no going back from this change.

Obviously, the procedure worked. I engrafted quickly as my bone marrow bounded back and began producing a good variety of cells, and the T-cells really cleaned up on the bad guys in town. However, that was when all the fun started, because although the T-cells knew they were in the right neighborhood, they also knew they were in the wrong house. In about a month, they decided to attack my liver and my skin, and I learned what Graft versus Host Disease is all about. I have remained in full remission of the Philadelphia chromosome positive, chronic myelogenous leukemia ever since, and my most recent molecular testing still reveals I remain 100% donor in my blood stream. Than means although my skin and tissue contain my good old regular DNA sequence, my blood is 100% my brother's DNA. This really brings siblings close, you know?

Tremendous gratitude prompts me to celebrate, and I planned to have dinner at a local eatery. However, the blizzard has short-circuited those plans. Better to rail and cry at the unfair weather, than to suffer the consequences of driving about in supremely inclement weather. My prime concern today is whether or not UPS or FedEx will be able to deliver my anti-cancer drug — the one I take to keep my CML in remission.* When I tell the online pharmacy where to deliver and under what conditions, they tend to whistle and not want to believe. You see the drug is very sensitive to temperature extremes and is horribly expensive. Local pharmacies and most hospitals do not stock it, because of the expense and because CML is relatively rare in the U.P. Ah! The joys of living 14 miles past the End of the Earth. It's ~12 miles from Houghton, MI to where we live in Laurium, MI. (See photo above.)

How Am I Doing?
Most of my friends and acquaintances ask that question whenever we make contact by phone, by e-mail, on Facebook, or face-to-face. It's a fair question and I'm never certain how to answer. Usually, I smile and say, "Great...I'm still here!" That may be the best answer of all. Detailed information about my daily experience would both frighten folks and bore them to tears. Large parts of my day are routine. I take medications four times each day, because some drugs cannot be taken within an hour of other drugs, and some cannot be taken with food, while others need food, both to work properly and not cause incredible distress. Azithromycin, I take only three days a week (MWF) and I don't look forward to those days as much, because the side effects are, shall we say, troubling and embarrassing.

I have a quick response kit: High dose antibiotics and prednisone, which I will take at the first sign of a cold or fever — even before the necessary trip to a hospital emergency room. They might be overkill, but could prevent another air ambulance flight to Rochester.

My lung capacity, when last tested, remains at about 25-27%, so I get out-of-breath easily and very cold air causes my lungs to almost seize (sometimes) making it painful to breathe. This hampers helping with the snow removal and even limits walking Dante. I try to take my turn with Dante, both because it feels right and I rather enjoy my time with my fuzzy friend. I look forward to warmer days, when we can walk (slowly, very slowly) about the area and get much needed exercise (while avoiding that treacherously inviting sunlight).

Recluse
Most have noticed that I seldom appear outside the house. I visit Portage Health once a month for blood tests (and sometimes an EKG
to see if one of my meds is messing with my heartbeat), and I sometimes go to Walmart — shooting for non-busy times and quick trips. Mostly, I stay home and avoid near contact with anyone who might have a sniffle. Although I had a flu shot and pneumonia vaccination, my ability to fight off these nasty bugs is minimal at best. I think I miss going to church the most. However, sitting for an hour in close proximity to so many folks who just might have a bug or two to share is frightening.

One cannot argue with success. On February 5, I passed one full year with no hospitalization for illness or injury.

Not Lonely
Of course, I am not always alone. Marian and Amanda are here and have learned to deal with my "storms of thoughts," and "poetry spasms." I spend a lot of time alone, both to think, read, watch movies, etc. and to give them time away from the grumpy, needy, curmudgeonly old head of household. Winter makes it even more important to maintain some personal space. It helps that I have my own room now. I had to take over the guest room (Michael's old bedroom) because it does not have carpeting and it does have air conditioning (for those rare simmering, sultry summer days when breathing is difficult). I keep the heat very low, and the blankets piled very high, all to assist with breathing. This also makes it less likely I will disturb Marian on those nights I cough myself to sleep.

So, although I spend a great deal of time alone, I am not lonely.

So, Then, How Am I Doing?
I am happy to be alive. I am blessed to have additional time with my family and friends. I am overjoyed that my muse has not deserted me, though some of my readers may wish she would take a vacation. I still try to live one day-at-a-time, with necessary consideration for the future, but no need to dwell on it. I spend my thoughts on fond memories of the past, with little need for regrets or recriminations. I read, I write, and I think crazy thoughts. I dream and I try desperately to remember those dreams, so I can share them. I have friends, and that has been the greatest balm for all my wounds. From early childhood, I had few friends, most of whom died, so I avoided making lasting friendships. Now, I have many and treasure them all.

How am I doing? I'm doing great! --
* BTW, UPS made it. They brought it from Marquette!

Mick