Beneath the surface

Much like my ability to hide the addiction issues from my friends and family, I essentially learned how to do the same thing with my health problems. From just looking at me, no one would have any clue about what I’ve been through physically and continue to deal with. This gets a bit technical but I’ll try to keep it as basic as possible with the correct info.

I fell ill shortly after graduating from college in late 2002 and it took about six months of being monitored at the Midwest Cancer Center in Columbia, Mo., before I was finally diagnosed with a rare blood cancer affecting the bone marrow called aplastic anemia. Basically, this meant that my body stopped creating the blood cells called platelets which we need in order for our blood to clot. Starting out, I had to get platelet transfusions and other blood transfusions on a monthly basis to keep my levels normal, but it didn’t take long before I required the transfusions more frequently. For example, my platelet count averaged in the 40s when normal counts range between 130-400. Plus, platelets only last 24-72 hours after transfusion.

It was decided by my doctors and family to undergo Antithymocyte globulin or ATG treatments in September/October 2003. The treatment was a serum administered intravenously for several hours during the process of four days in order to suppress my immune system from attacking the new cells that my body created. Starting off, the first treatment gave me a severe allergic reaction that required my first experience of being slammed with steroids to combat my body’s rejection of something that’s supposed to help me. Other than a problem with my veins giving out, blowing, or collapsing on the IVs that were replaced repeatedly, I made it through the treatments and was placed on cyclosporine pills. This medication was designed to keep my immune system suppressed while I had to wait for 6-9 months to see if the ATG treatments had been effective.

To the relief of my doctors, friends and family, my blood counts stabilized and I was able to live two years on the immunosuppressive therapy before I started getting sick again. Apparently, my disease had mutated into a more advanced bone marrow disease called myelodysplastic syndrome (MDS), otherwise known as pre-leukemia. I was admitted to the hospital a number of times in late 2005 and early 2006. My health continued to deteriorate including my blood counts. This was when I was informed that I would only have 6 months to live if I didn’t receive a bone marrow transplant…