A Visit to Mayo Clinic
It has been five days since my day filled with tests and talking at Mayo Clinic in Rochester, MN. Slowly, the days have accumulated, now 1,548 since my transplant, and I’ve made a glacial shift from “each day may be my last,” to “make the most of each day AND maybe there will be more to come.” It seems that the light at the end of my tunnel may not be a freight train after all.
Thursday, Bloody Thursday
Our day started, as usual, with an early walk to Lab A of the Charlton Building. It was threatening to rain heavily, but only misted -- almost an attempt to dampen our spirits -- yet, we remained upbeat. My phlebotomist discovered that I was not joking about my stealth
veins. Despite several careful efforts, the weary, wary, and scarred veins in my left arm refused to let a needle penetrate and simply rolled away. Finally, she had to puncture a vein on the back of my right hand to draw vampirical quantities of blood. Covered in bandages and feeling as though I was leaking blood from both arms, we progressed to the nuclear medicine lab in the Gonda Building.
Bones and Breath
After a quick stop at the cafeteria for decaf and a bran muffin, my bones were scanned to find out if either my Graft vs Host Disease (GvHD) or my medications were leaching minerals from my bones and weakening them. Later, I would find out that although I lost a little in one hip, all my bones are well within normal bone density range. Good news.
Next came the always-present Pulmonary Function Study. Breathe through a tube, breathe in a box, breathe on the stair stepper. No improvement, but no further loss of lung capacity. I did note, however, that after three minutes on the stair stepper, my oxygen level never dropped below 93%. No gold medals were given, but I was pleased.
The Art of Conversation
The next four hours were spent waiting and talking and waiting and talking. We reviewed all the medications I dutifully dragged with me to the BMT Unit. Then I talked to a transplant coordinator and my doctor. It seems I am doing very well.
My CellCept (anti-rejection medicine) dosage has been halved to only one pill per day. Two years ago that was four pills per day. If in the near future they can stop the CellCept, which suppresses my immune system, I should be able to stop the antivirus, antifungal, and antibiotic medicines because my immune system should step up and do its job. This was great news, but only part of what I learned.
Next year will mark five years on Sprycel (Dasatinib) during which time, not one trace of the telltale fusion protein has been detected. They well might stop the Sprycel as well. It is unlikely I will be free of medications, as all the chemicals and treatments have profoundly altered my body chemistry and treated my system rather rudely. Still, who at my age, doesn’t take a pill for blood pressure control or an aspirin to help prevent heart attacks?
I’ll still have only 25% lung capacity and have to be careful about exposure to viruses, dust, and allergens. I can never swim again and will still walk slowly. But, I will be smiling…
Note: One week from today (May 26th) will mark my anniversary as a 5-year survivor! Thanks for all the prayers and good thoughts, positive energy and best wishes! I treasure each day and try to live every minute. Life is precious to me and I have hope for the future!
Good night, and God bless!Mick