Acute Myelogenous Leukemia – “Except I kept getting worse and then somehow a mono diagnosis turned into an acute myelogenous leukemia one instead.”
When I was nineteen and nearing the end of my freshman year at art school, I started feeling flu-ish. No big deal. I didn’t let it get in my way. So, I visited the school clinic and they told me it was mono, sent me off with a bottle of antibiotics and that was that. Except I kept getting worse and then somehow a mono diagnosis turned into an acute myelogenous leukemia one instead. Needless to say, it was quite the shocker for me… My concept of the world and my place in it changed within a few minutes in an emergency room. I remember thinking “I really understand how Charlie Brown and all those kids in Peanuts felt when their parents talked to them..” because that’s how I heard everything the doctor told me after he handed me my Dixie cup of water and told me I had a cancer called AML (adolescent and Young adult cancer) … “Whaa wha wha whaa wha..”
After what felt like days, but was probably record-breaking time, my parents came and took me back home for treatment. Although I was nineteen and technically, an adult, I followed what people told me like a three-year-old tethered to her parent. I had minimal knowledge of leukemia except for what I had seen on commercials of bald, dying children. My life felt like an alternate reality that I really didn’t have to make any decisions in, so I let others do all the decision-making for me. My memory of that time is fuzzy and comes in comic strip-like images, which I’m assuming I did to protect myself.
The chemo worked a little but not enough and so it was decided that I needed a bone marrow transplant, which could be done nearby at the Cleveland Clinic. All we had to do was wait to see if my older sister or either of my parents were a match for me, and my sister turned out to be a perfect match. My bone marrow transplant was scheduled to take place on September 12, 2001. On 9/11, I remember feeling numb and completely hollow and empty. I felt like there was nothing I could do to save anyone in New York, let alone myself. I felt like the walking dead – a person without anything inside to protect her, waiting for someone else’s blood to be placed where there was just emptiness. It was at that point I lost my sense of identity.
The transplant went smoothly and was entirely too much of a non-event for me, because it was just another set of IV bags. After the transplant, I lived in isolation and followed all the rules for the first 100 days, which is considered the critical time when you wait to see if the graft takes to the host and if the patient develops acute graft vs host disease, which can be problematic, to put it mildly. It was an incredibly lonely and revelatory time for me, because I finally had the time to process what had just happened.
I actually think of everything up to day 100 as the easy part. It was later, when I developed chronic graft vs host disease that things got a little rough. I spent the next decade on the roller coaster ride of prednisone, trying to guess what was going to happen next. In that time I developed a series of odd, irritating, chronic, and life-changing conditions either because of gvhd or the treatment for it. It didn’t make any sense to me to be given all these bonus years if they were spent in pain or lacking any positive quality of life. It was also during this time that my family became extremely frustrated because we had so much trouble finding information about graft vs host disease even though it impacts approximately half of all patients who receive bone marrow transplants. So in 2007, my dad and another fellow cancer survivor decided to start The Meredith A Cowden Foundation, which was designed to provide funds for research and education about blood cancers and complications of treatment, specifically gvhd. Since then we’ve had a number of events that raise money, which is donated for research and patient services programs. Every year we have a golf tournament, a chef dinner with six courses (it’s my favorite), and beginning last year, a national gvhd symposium for both clinicians and patients. My hope for the foundation is that we can help provide researchers with the funds they need to figure out ways to prevent the complications that I and many other BMT patients deal with on a daily basis. I want people to get all those bonus years with great quality of life. I also hope that we can help patients learn about gvhd and post-transplant complications so they have the information they need to get through whatever they’re dealing with, because (I’m sure I’m quoting grade school teachers everywhere) knowledge really is key. If you want to learn more about the foundation, please visit www.cowdenfoundation.org.
In the meantime, I’ve managed to finish graduate school and currently work as an art therapist and counselor, which I find both challenging and rewarding. As far as my health goes, I still have a bunch of problems, but I take things day by day and make my way through the hard days to enjoy the good ones, which aren’t so few and far between anymore.
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