After I was diagnosed in January of 1989 the medical profession tried their best to use me as a guinea pig. I believe they do this because they know you are in shock and very vulnerable. At age 29 and three small children, I was definitely in shock. The doctor who diagnosed me said I would be dead in 3 to 3 and one-half years. The fear was overwhelming and I know now that I was incapable of making a rational decision. I decided to put off a BMT and keep my options open.
Finally, at age 35 I decided to have the BMT. My family members were tested and luckily I had two siblings that were both perfect matches. A BMT is not a surgical procedure but a medical procedure that is non-invasive but very intense. I along with nine others I began the procedure on the same day as they did. We received 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 they kill you and then they do their best to try and not just revive you but to keep you alive for as many years afterwards as possible.
Call me the lucky one, but the other nine BMT recipients began to die almost immediately and by the end of the first year there were only three of us left. And during the next six months the other two succumbed to the BMT. Once you have a BMT the leukemia never is the cause of death. The number one cause of death after a BMT is graft vs host. Graft vs host is where your new bone marrow sees all these foreign organs and objects in your body and tries to eliminate them. Remember you have the donor’s bone marrow in you and the bone marrow sees your body as completely foreign. The doctors try hard to help the bone marrow to adjust but it is normally a losing cause. I am not absolutely sure but my guess is that all of the other nine people lost their life to the battle that went on inside of them because of graft vs host.
After having the BMT I was tested several times to see whether I had graft vs host but I never did. I did happen to have and get almost every other ailment and malady possible but I have survived and am currently doing okay. Life has been very different from what I was expecting. At 53 years old I am still unable to work a full-time job. The chemotherapy and radiation does things to the body that the doctors are still looking for answers to.
To give you a brief idea as to what I have gone through– I have had pneumonia 15 to 20 times and each time was a hospital visit of on average 2 weeks. I contracted the shingles more than 10 years ago and still suffer from that on occasion. I have had cataract surgery on both eyes. A month or two after the BMT my weight dropped down 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 rapped in skin and I could barely walk. At my home I had to crawl up the stairs to the bedroom because I could not stand to be on my feet that long. I had double hernia surgery and several other painful maladies that still seem to linger.
I still have trouble with my weight so the doctors have given me a medication to increase my appetite so that I can gain weight. It took me approximately 2 years to finally get up to 150 pounds but today I have gain much more weight due to the medication and am at nearly 200 pounds. This is about the perfect weight for my body.
To this day my main problems are severe fatigue and terrible digestive track problems. But, at least I am alive and have seen all four of my children grow and become adults. I currently have 3 grandsons and 2 grand-babies in the oven. Life is not necessarily great but I do know that it could be a lot worse.