Mick McKellar Update--Day +87
When Roger Whittaker sings The First Hello, The Last Goodbye, I am always struck by the line: "They say the moment that you're born, is when you start to die." I was reminded of that line in conversation with my doctor this afternoon, when she handed me a prescription for Dasatinib -- the very same medication I was taking in 2010 to control Chronic Myeloid Leukemia.
I will be taking a lower dosage of the medication, as a control against the re-appearance of the BCR-ABL fusion protein, associated with the Philadelphia chromosome. This little wonder, where chromosome 9 and chromosome 22 contribute to the creation of the Philadelphia chromosome, is the source of both my chronic myeloid leukemia and then my acute lymphoblastic leukemia. Dasatinib inhibits the development of that protein.
No, they have not detected it anywhere yet. Next week, I will have a bone marrow biopsy to see what we shall see. Bone mineral density tests, x-rays, pulmonary function tests, and lots and lots of blood tests -- all next week as we approach day 100 -- traditionally, the end of the acute GVHD period and the beginning of the chronic GVHD period. It appears that my rash may be transitioning from an acute version to a chronic problem and I may be treating it, off and on, for the rest of my life. Oh, joy.
My red blood cells continue to die (Hemoglobin now at 8.9), but the hemolysis is progressing slowly and seems likely due to one or more of the 16 medications I take every day. A test was done to see if any of my old antibodies might have survived and been fighting with antibodies I inherited from my brother/donor Kevin. That test came back negative. The mystery continues.
My liver numbers look normal. My kidneys have stabilized, but at a higher number (creatinen 1.9) than they would like. Most of my other numbers are in really good shape. She reduced my Prednisone dosage from 20MG per day to 15MG -- another step in the right direction, but not enough to terminate insulin control and treatment for the (we hope) temporary diabetes.
Today was a sobering day, as the realization of the frailty of my success soaked into my chemically-treated brain. Forced to think ahead and step out of my one day at a time focus to consider the challenges, roadblocks, and dangers on the path, I felt a little chill spread inside at the cost: extreme vigilance and expensive medications.
Walking it off
The intrepid walkers traipsed to the hospital twice today (6:00 AM and 11:00 AM) in weather that seemed to threaten rain, but brought only warm temperatures - 70 at least - and it is still 65 degrees at 8:00 PM. We have the next three days free of hospital visits (other than the pharmacy) and the weatherman says all three threaten thunderstorms.
Our third and last jaunt downtown was to Bilotti's Italian Village for some very cheesy and delicious pizza. With my current reduced capacity for food, and my limited ability to digest cheese, I have leftovers for two more meals, so it works out well for our budget. Marian, being the smarter one, ordered a much smaller pizza and has leftovers for only one more meal. I was happy to walk the seven blocks back to the transplant house.
Fading light tells me that sunset is happening somewhere and twilight will be upon us soon. I was thinking about a story I read in the news tonight -- about the latest prediction that the Rapture will come upon us this Saturday, May 21, 2011. As I thought about it, my mind clicked on the thought: "Yeah, but I still have tomorrow, if God permits, and then Saturday will arrive for me or it won't." That decision is not mine to make, only the decisions on how to live my each and every gifted day are mine. I think we forget the tenuous nature of our existence sometimes, and spend time worrying about distant dates that may never arrive -- time we could spend living now the best lives we can manage. Hence, Personal Rapture touts the treasure to be found by living in the precious present.
Thanks for the treasure of your prayers and good thoughts. Thanks for the gifts of your communications. Thank you for your visits and cards and e-mails and calls, bringing us close to home each day.
God bless and good night,
Mick
And now, Personal Rapture
When Roger Whittaker sings The First Hello, The Last Goodbye, I am always struck by the line: "They say the moment that you're born, is when you start to die." We forget that life is a temporary job and could lose that job without a lot of notice. Young people seem to have little sense of danger or personal mortality. Older people sometimes seem to simply give up and let their lease expire.
For those threatened by a disease or disaster which could or will end that life, the initial reaction (at least in my case) is fear of losing everything and of dying alone. However, many discover that by living each day as a gift, and as though it may be your last, you can live in the present, the precious present, and not worry about tomorrow, for tomorrow is in God's hands and is His present to bestow.
Mick
Personal Rapture
It's so easy to lose track of the fact,
That we all have an expiration date.
Little wonder so many of us act,
As if life and health remain on our plate,
Until we decide that the meal is done.
Invulnerable, we think, in our youth,
Many seek out thrills for life is boring;
And in our old age, though we sense the truth.
We spend a great deal of our time snoring,
Or worse, we end up spending it alone.
For those whose illnesses threaten their lives,
Fragile veils of self-deception shatter.
The loss of children, of husbands, of wives,
Of leaving behind the things that matter,
Fills their hearts with fear for when they are gone.
The precious present, for those who find it.
Is treasure beyond any Earthly store.
Some day they will die, but they don't mind it,
Living each day as if gifted one more,
Loving the gift as though it's the last one.
Mick McKellar
May 2011