Mick McKellar Update--Day +77
The intrepid walkers dared the elements at 5:30 AM, only to arrive at the Charleton Lab A, with a line already out the main door. Monday's are crazy, yet they completed my tests before 7:00 AM. This allowed us to walk back to the transplant house, arriving about 20 minutes before the rapidly-darkening skies opened up and a wicked thunderstorm deluged the area.
Our second trip to the hospital was by Patient Shuttle, because of the heavy rain. After consultations, however, the storm passed and we were able to walk back.
The medical news is less stellar. My GVHD rash is back, so we will continue to battle it with steroid creams. There is also a problem with my red blood cells. Something appears to be killing them off at an accelerated rate (hemolysis is the term, I believe), so the search is on to determine the culprit -- probably one of the medications I am taking. In the meantime, we watch my red skin and hope that the rash fades away again. My creatinen is up two points again, so more medication adjustments are being considered.
And I am still trying to drink at least three liters of water a day -- sounds easy, but try it. Otherwise, there are no new indicators of medical problems.
To sleep, perchance...
Sleep remains elusive, despite chemical aids. My "hammer" does knock me out for a few hours, but the three liter water thing results in multiple risings overnight, only to struggle to get back to sleep. I try to rest (nap) in the afternoon, but have not been successful. Walking and stair-climbing physically tire me, but triggering a nap escapes my grasp again and again.
Sometimes, the odd result is a twilight state, where I am not quite able to day dream or snooze, but feel only about half-awake -- as though I am falling asleep, and falling and falling...but never quite getting there. Oh, I know that medications can cause this -- that odd combination of drugs like Prednisone that keeps you up and others that promise drowiness and dizziness. Sometimes it is hard to tell who is winning in the race to mess with Chemical Elwin's head.
To fight encroaching malaise, I write this journal and, when my Muse permits, a poem. “My Twilight” (and its introduction) attempt to explain the sensation of what many here call "chemo brain." At least, this has been my experience with that phenomenon. Your mileage may vary.
Thank you for your prayers and good thoughts.
God bless and good night,
Mick
And now, My Twilight
Over the past year, since my diagnosis with leukemia, I have begun to doubt that old phrase about "better living, through chemistry." (One of the major chemical companies used it as a slogan on radio and television many years ago.) In the last year, I've had drugs as innocuous as Tylenol and some that would burn a hole through a tile floor pumped into my bloodstream or popped down my pie-hole. A substantial number warn me that they may cause drowsiness, dizziness, stomach upset, sensitivity to sunlight, and a host of other wonderful side-effects.
At times, the compounded effects of these drugs, when hitched to my wagon alongside a healthy dose of fatigue, take me to a twilight state -- not quite awake and not quite asleep. I can hear you, distantly. I can respond to you, but slowly. This is not the comfortable warm fuzziness of day dreaming or the languorous swim back from a nap. This is swimming in Jello with my head below the surface. It is dim world, where I feel connected and detached at the same time. It is not intoxication, it's twilight.
Mick
My Twilight
You sound so yonder when you talk to me,
Your voice, as though descending from a cloud,
Touches my ear as would the distant sea:
Calling, singing, but never very loud.
Heard imperatives, bear no urgency,
Or penetrate my soft, fuzzy cocoon --
In my redoubt from all emergency,
Where nothing needs to happen "very soon."
So, I decide it's best a note to write,
But now my fingers feel so faraway,
And in this growing gloom, I'd need more light
To find a piece of paper anyway.
I will try to remember what you said,
At least, what has not leaked out of my head...
Mick McKellar
May 2011