Oscar Wilde said, “In this world there are only two tragedies. One is not getting what one wants, and the other is getting it. The last is much the worst.” His insight applies directly to my current medical circumstances, and helps explain why it is so difficult to manage all the chemistry taking place in my veins. Determining and maintaining an optimum therapeutic level of cyclosporin, the drug that helps prevent rejection is like spoon-feeding gasoline to a running engine and keeping it at peak efficiency. Why is this important?
Along with Kevin’s stem cells came his T-cells -- the attack dogs of blood cells. We need for those cells to remain active, scouring the whole of my system for any remaining leukemia cells, and to destroy those leukemia cells. On the other hand, these little guys consider all my cells to be fair game and go after the most active ones -- besides cancer cells, active cells include hair cells, mouth and esophagus cells, and (of course) my intestinal tract. Put too much anti-rejection drug in there, and the cells don’t do their job. Put not enough in there, and there are too many losses from “friendly-fire.” What does this mean for me?
Well, it means aches, pains, fatigue, nausea, mouth and throat sores, and a bewildering variety of internal maladies that are simply part of the process. They have amazing drugs to help with the nausea and pills to help protect my liver and my kidneys. It means I must drink at least three liters of fluids (or more) each day -- try it, it’s not as easy as it sounds. I have to eat more than I could possibly want, especially when so much tastes so little, and still I am losing weight. Poor Marian is my Drill Sergeant. Imagine having to nearly force-feed someone you just spent over 39 years pleading with to stop shoveling food in his pie-hole.
Today has been a little better than yesterday. Some of the adjustments to the medications are relieving some of the more severe reactions. Marian is still fighting with her cold --
Marian decided to take the Shuttle to WalMart this morning and get sundries and supplies. Shortly after she left (and before she was to return) a nurse called from the hospital to advise me that I needed a three-hour IV booster for Magnesium. I called the Patient shuttle as late as I could and the the WalMart Shuttle was late coming back. Marian was only able to make the Patient shuttle by setting a new record for putting things away, flying up two flights of stairs twice, and sprinting for the bus. The IV, of course, lasted until after the last shuttle for the day, and we had to walk back to the transplant house. It is becoming a typical day and I expect it will get worse as the transplant gets more exciting.
We received some wonderful cards today, and reading them was a beacon of light in a chilly and frustrating afternoon.
We will soon be turning down the lights and drifting off for another night of totally interrupted sleep. The process is after my intestinal tract right now.
Once again, your notes, e-mails and cards help tremendously, as you your prayers.
Thanks and God bless,
Mick