After I was diagnosed in January 1989, the medical profession did everything possible 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 with three young children, I was definitely in shock. The doctor who diagnosed me said that I would be dead in 3 to 3 and a half 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 have the BMT. My family members were tested and luckily I had two brothers who were perfect. A BMT is not a surgical procedure but a non-invasive but very intense medical procedure. I along with nine others 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 go out of their way to try and not just 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 a BMT, the 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 organs and foreign 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 do their best 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 inside them due to the graft vs. host.

After I underwent BMT, I was tested several times to see if I had graft-versus-host, but I never did. I happened to have and had almost every other ailment and illness possible, but I have survived and am currently fine. 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 to.

To give you a brief idea of ​​what I’ve been through, I’ve had pneumonia 15-20 times and each time it was a hospital visit of an average of 2 weeks. I contracted 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 the BMT, my weight dropped to 114lbs, and at 6’2″ I had very little flesh on my body. Other than no hair anywhere, I was a bunch of bones stuck in the skin and I could barely walk. At home I had to crawl up the stairs to the bedroom because I couldn’t stand standing that long. I had surgery for a double hernia and various other painful conditions 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 gained 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 into 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.