After I was diagnosed in January 1989, the medical profession went to great lengths to use me as a guinea pig. I think they do this because they know you are in shock and very vulnerable. At 29 years old and with three young children, he was definitely in shock. The doctor who diagnosed me said that I would be dead in 3 to 3 1/2 years. The fear was overwhelming and I now 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 take the BMT. My family members were tested and luckily I had two brothers who were perfect. A BMT is not a surgical procedure but rather a non-invasive but very intense medical procedure. I along with nine others started the procedure the same day they did. 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 go to great lengths to try and not only revive you but keep you alive for as many years as possible.
Call me the lucky one, but the other nine BMT recipients started dying almost immediately and by the end of the first year there were only three of us left. And over the next six months the other two succumbed to BMT. Once you have BMT, leukemia is never the cause of death. The leading cause of death after BMT is graft versus host. Graft versus host is where your new bone marrow sees all these foreign organs and objects in your body and tries to remove them. Remember that you have the donor bone marrow in you and the bone marrow sees your body as completely foreign. Doctors work hard to help the bone marrow adjust, but it’s usually a lost cause. I’m not absolutely sure, but my guess is that the other nine people lost their lives in the battle that raged within them due to graft versus host.
After I had BMT, I was tested several times to see if I had graft versus host, but I never did. I happened to have and have had just about every other ailment and illness possible, 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 to the body that doctors are still looking for answers for.
To give you a brief idea of what I’ve been through, I’ve had pneumonia 15-20 times and each time it was an average 2 week hospital visit. I got shingles over 10 years ago and still get it from time to time. I have had cataract surgery in both eyes. A month or two after BMT, my weight dropped to 114 pounds, and at 6′ 2″ I had very little flesh on my body. Besides no hair anywhere, it was just a bunch of bones stuck in my skin and I could hardly walk.At home I had to crawl up the stairs to the bedroom because I couldn’t stand standing for so long.I had surgery for a double hernia and several other painful ailments that still seem to persist.
I still have problems with my weight, so the doctors have prescribed me a medicine to increase my appetite so that I can gain weight. It took me about 2 years to finally get to 150lbs, but today I have put on much more weight due to medication and I am almost 200lbs. 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’m alive and I’ve seen 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.