Mick McKellar Update--Day +28
Today was a mixed bag. We had to take the earliest shuttle to Rochester Methodist, so I could have some blood work done. They only drew about 10 vials, and with the Hickman central line in place, that did not take long. One of the vials is for the Chimera test. I hope to hear by Thursday what percentage of the blood in my veins is Mick Blood and what percentage is Kevin Blood. We are all voting for Kevin blood as the clear winner.
All my numbers are up and that is good news as well. In fact the doctors say it appears I am fully engrafted -- very quickly and with few if any early signs of GVHD.
My desensitizing to Bactrim began today. It's a sulfa drug and my parents always told me I was allergic to sulfa drugs. No reaction yet. We are praying this works because the chronic cough caused by the nebulizer infusion of pentamidine (sp?) to prevent a particularly nasty form of pneumonia (a real killer) on March 10, has become a central problem with my life. Bactrim is standard preventative treatment.
The cough is preventing me from getting any real REM sleep at night and each day is a bit foggier. Tonight, we bring out the big guns: Benadryl and Robitussin D with Codeine. Propped up in bed, I ought to get a few zzzz's.
Eating remains a problem. I am not hungry and nothing tastes good to me, period. Marian does her best, but it has become a chore to eat anything at all. And my energy level is still under the red line.
After my inquiry about recovery and energy levels, Dr. Srivastava told me today that the level of trauma to my body caused by my blood and marrow stem cell transplant is far greater than if I had had open heart surgery and is far more extensive.
So that is the bottom line: I am doing great and feeling lousy.
My bright spot has been Marian. She is managing well, changing dressings, flushing the lumens on my Hickman with Heparin every day. and still has the energy to prepare meals for me to ignore (or eat as much as she makes me eat). When she said "for better or for worse," she meant it. The time she spends in waiting rooms must seem endless, and she helps keep me walking so I don't regress to a wheelchair -- despite the fact that my speed is somewhere between dead slow and dead crawl. And she has encouraged me to climb stair cases that make every muscle and fibre ache. When I start to complain about how tough it is for me, I think about her job, and I shut up. (Well, most of the time..)
Speaking of shutting up, I have about reached the end of my useful battery power for tonight. It's up early and back to the hospital for more tests tomorrow.
Thank you all for following along on my journey. Some of this stuff is pretty mundane, but I am reminded daily that, as happens with a significant number of BMT patients, I could simply doze off one afternoon and never again wake up in this world. Talking with you about the gains and pains. Kvetching about the small stuff. Talking with God about the big stuff and knowing your prayers are ascending and good thoughts are surrounding us, makes the rest bearable. Each night I thank God for the day lived and I ask for one more. So far, He's been generous...and you cannot imagine the value every minute of each new day has for me. I am looking for a cure, but I am loving every extra day among my friends.
Thanks for the cards, letters, e-mails and calls. One I got today was so funny it caused a coughing fit. Thanks for the pieces of home.
I am tired now, so God bless you all and good night.
Mick