It was March 4, 2000, four months before my 21st birthday, when I was diagnosed with chronic myeloid leukemia (CML). Even though I had many of the symptoms, it was a shock to hear the news. I had rationalized an excuse for the various symptoms and didn’t get checked out until I couldn’t rationalize away the pain in my left side. When the doctors did a blood test, my white blood cell count was 387,000 and way over the normal count and that was causing my spleen to be enlarged which was causing the pain. I was admitted to the hospital, and we went over my options for treatment. I chose to try for a bone marrow transplant, and my brother was going to get tested to be a donor. It turns out he wasn’t enough of a match, and they tried to find a donor in the registry. I lucked out because they were able to find a perfect match for me in less than three months. In June, I did all the various tests for my pre-transplant workup, and my transplant date was scheduled for July 19. I was admitted into the hospital on July 12, and I had six days of extensive chemo to kill my cells before I got the donor cells. After the transplant day, I was in the hospital for a few weeks for observation, and then I was released.
I managed to stay out of the hospital for almost three weeks, and then I was having severe bouts of graft-versus-host disease (GVHD) of the gut. I went back into the hospital on August 27. I had other complications when my central line got tugged and fell out the next day, so I had to get a new one put in. Then I had a reaction to medications and went into septic shock.
On September 10, I fell into a coma for two weeks. When I woke up from the coma, I had to learn how to walk again and relearn some of my fine motor skills, like writing. And I lost my voice when I was intubated while I was in the coma (which didn’t come back until months later). I stayed in the hospital for over a month, going through physical therapy and being observed/helped for the continuing graft-versus-host disease. When I was finally released, the doctors made me go back in because they thought I had CMV. It turns out I didn’t have that, and I was released a couple of days later. I managed to stay out of the hospital until after Christmas. On the 27th, I ended up getting a fever of 102.3 and was back in the hospital until New Year’s Day. That was my last hospital stay, and I was on the road to recovery.
I went back to work like normal in May 2001. When I had my one-year check-up, they told me that I was 100% my donor down to the DNA. In 2004, my friend, who had leukemia when we were in grade school, was actively involved in the Light The Night (LTN) walks, and she got me to join her team. After a couple of years, I branched out and formed my own team, and I have been walking and raising money for Blood Cancer United ever since. In March 2008, I got to meet my donor in person. And over the last 10 years, I have been a mentor for other bone marrow transplant patients/survivors. I want to help and/or inspire others with my story and what I went through during my treatment.
Michelle
chronic myeloid leukemia (CML)
