After about a month of feeling fairly normal, a few trips to Tampa for preliminary tests, and classes on what to expect as a patient or a care-giver, it was now April 2010 and time to check-in as an in-patient at the Moffitt Cancer Center.
While the initial chemo (in West Palm Beach) was very strong, we were warned that the pre-transplant chemo would be even stronger. They were correct. Essentially they completely kill your bone marrow so that all blood being produced after the transplant will come from the new marrow. As in the past, the reaction to the chemo wasn't immediate and when I got the transplant I was still feeling fairly good. We didn't know why at the time but the transplant was delayed one day and we were told it was being flown in and would arrive late the day of the planned transplant. Too late to administer that day since Moffitt had to do their own testing on the stem cells and would only perform the transplant during the day when the hospital is fully staffed. We now know what caused the delay. Sorry you had to do a second day Kylie.
The actual transplant (receiving the stem cells) was much easier for me than for Kylie. It was very much like getting blood; hook up bags to a pump to regulate the flow, adjust and let it drip. But that was the end of the easy part. Now the chemo is starting to rear its ugly head so I'm not feeling great. I have no white blood cells so there is great risk for infection and we have to watch very carefully to make sure my body doesn't reject this important new material. A 10 for 10 match greatly reduces the risk of rejection but doesn't eliminate the risk completely. Once again, loss of hair, weight and appetite along with a variety of pain medications. All from the chemo, not the transplant. They actually have a candy cart go to each room every afternoon with candy and cookies, hoping you will at least eat something, even if it is junk food. There were a few days when I couldn't eat anything, not even M&Ms.
As the month progresses so does the healing. With daily blood tests and occasional bone marrow biopsies my progress continues and by the fourth week I'm feeling a little more human; and counting the days until I can get out of there. Tests reveal that my new marrow is starting to produce healthy blood cells. Great news!
During this month my wife is busy working almost full time, visiting me, and working with friends and family to schedule care over the next two months when I'll be in the clean apartment near the hospital.
Finally, discharge from the hospital and off we go for the 5 minute ride to the apartment. Nice, modern, 2 bedroom 2 bath apartment reserved specifically for Moffitt patients and kept spotless between patients by Moffitt employees. Without any problems, friends and family came (from Florida, Oregon, California and Pennsylvania) for a week at a time to help with my care. They cooked, cleaned, did laundry and took me to the hospital for my tests and to pick up various prescriptions. It felt like a real breakthrough when we didn't have to go every day. I'm very grateful for all of the work involved to make that happen.
While I continued to improve, the progress was frustratingly slow and at the end of the two months in the apartment I felt much better but far from normal. Looked at another way, I was doing very well for someone who had a disease that kills two out of three people. The trip home seemed to take forever but it was great to walk into our own house (and crawl into my own bed).
Part 3 will cover the continued treatment and healing.
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