After I was diagnosed in January 1989, the medical profession did everything it could to use me as a guinea pig. I think they do this because they know you are in shock and you are very vulnerable. At 29 years old and three young children, he was definitely in shock. The doctor who diagnosed me said that I would die in 3 or 3 and a half years. The fear was overwhelming and now I know that I was unable to make a rational decision. I decided to postpone a BMT and keep my options open.
Finally, at the age of 35, I decided to do the BMT. My family members were tested and luckily I had two siblings who were perfect matches. A BMT is not a surgical procedure, but a non-invasive but very intense medical procedure. I, along with nine other people, started the procedure the same day as them. We get three days of what they call lethal chemotherapy and then four days of total body irradiation. The only way to describe what they do to you is that they kill you and then do their best to try not just to revive it, but to keep you alive for as many years as possible.
Call me the lucky one, but the other nine BMT recipients began to die almost immediately and at the end of the first year there were only three left. And for the next six months the other two succumbed to the BMT. Once a bone marrow transplant is performed, leukemia is never the cause of death. The leading cause of death after bone marrow transplantation is graft versus host. Graft versus host is where your new bone marrow sees all of these foreign organs and objects in your body and tries to remove them. Remember you have the donor bone marrow and the bone marrow sees your body as completely foreign. Doctors struggle to help the bone marrow adjust, but it is usually a lost cause. I’m not absolutely sure, but I assume that the other nine people lost their lives in the battle that unfolded within them due to the graft against the host.
After I had BMT, they did several tests to see if I had graft versus host, but I never did. I happened to have and have contracted almost every other possible ailment and illness, but I have survived and am currently doing well. Life has been very different from what I expected. At 53 I still can’t work full time. Chemotherapy and radiation do things in the body that doctors are still looking for answers to.
To give you a brief idea of what I have been through, I have had pneumonia 15 to 20 times and each time it was an average 2 week hospital visit. I contracted shingles more than 10 years ago and still suffer from it on occasion. I have had cataract surgery in both eyes. A month or two after the BMT my weight dropped to 114 pounds, and at 6’2 “I had very little meat on my body. Besides having no hair anywhere, I was a rack of bones beaten into the skin and I could barely walk. At home I had to crawl up the stairs to the bedroom because I couldn’t bear to stand for so long, I had double hernia surgery and several other painful illnesses that still seem to persist.
I still have problems with my weight, so the doctors have prescribed a drug to increase my appetite so that I can gain weight. It took me about 2 years to finally reach 150 pounds, but today I have gained a lot more weight due to the medication and I weigh almost 200 pounds. This is the perfect weight for my body.
To this day my main problems are severe fatigue and terrible digestive problems. But, at least I am alive and have watched my four children grow up to be adults. I currently have 3 grandchildren and 2 grandchildren in the oven. Life isn’t necessarily great, but I know it could be a lot worse.
