GUEST COLUMN: Dancing with Fate: My journey to graduation
Hudson senior Kyle Tanner explains his struggle with a terminal illness on his way to graduation
We are all dying, but inversely, we are also all living.
For the past eight years of my life, I have been called a fighter and a warrior. I have dealt with more medical trauma in the past eight years than most will in a lifetime. However, I have not fought a single battle. I have not gone to war, but I have stepped on to the dance floor to dance with fate, to hold hands with what may eventually lead to my death.
When I was 16 years old, I was diagnosed with a rare, life-threatening disease called Fanconi Anemia (FA).
Fanconi Anemia is a condition that affects many parts of the body but mainly contributes to problems in bone marrow function, organ defects, blood defects and physical abnormalities.
FA also affects the way that my DNA repairs itself. This will most likely lead to some type of cancer before age 30.
The average life span of someone with FA is 33 years… Very grim, right? At 16 I had no idea how to process the major shift that happened in the way I looked at the world around me. I remember my doctor asking if I was scared. I don’t remember what I said -- I didn't understand the severity of my illness. I have heard from peers that doctors would rather see leukemia than FA.
I went from thinking about school, girls and video games to feeling like the world was crashing down on me.
After the diagnosis, I was treated differently by everyone, but most people did not understand the full scope of what was wrong with me.
I enrolled at Central Michigan University and tried to enjoy my time away from home, although I still had frequent bone marrow biopsies and blood draws to monitor the progression of the disease. I was trending toward needing a bone marrow transplant, but the timeframe was unclear.
It was during the fall semester of my senior year when my bone marrow biopsy showed the rapid formation of chromosomal aberrations, which if left untreated, would lead to Acute Myeloid Leukemia, separate from my already underlying Myelodysplastic syndrome (Pre-Leukemia). It was just days before finals when my doctor and I decided that I would get a bone marrow transplant. Little did I know what would happen over the next two years.
To prepare for the transplant, I was strapped to a cold, hard radiation machine while my body was blasted with destructive, yet possibly life-saving radioactive waves. I also went through five days of intense chemotherapy -- not the type that most cancer patients receive -- this chemo would bring me as close to death as I could get, without actually killing me.
The day came: Feb. 7.
The day I would receive my new cells, and my body would hopefully accept the new marrow, while my old, tainted cells die off.
The transplant itself lasted about 30 seconds. It was more of a glorified blood transfusion if anything.
Something didn't seem quite right though. I was told the process would last a few minutes to an hour. Why did it only last 30 seconds? The doctors assured me everything was fine.
The next morning, one of my doctors came in with some news. She said I didn’t receive enough cells. She needed to contact the donor again to see if they would be willing to donate more or search for cord blood in the registry. My body had already been pumped full of cell-killing chemotherapy, and my cells were quickly dying off. At this point, I thought, whatever happens is out of my control.
The side-effects of the chemotherapy began to kick in. Starting with mucositis, which causes inflammation and ulceration of fast-dividing cells in the mouth and digestive tract. I was put on 24/7 IV fentanyl to control the pain.
I realized then that this was not a fight. I didn't benefit from expelling my energy trying to fight the flow of life. I was not a fighter; I was a dancer. A dancer moves gracefully through life, rolling with the obstacles life inevitably presents.
Around a week after my first transplant, the doctor had some good news: my donor in Germany agreed to donate again. I received my next transplant on Feb. 17. I cannot thank my donor enough for this selfless act. This time I received hematopoietic stem cells which increased the risk for developing graft vs. host disease. Graft vs. host disease, or GVHD, is a post-transplant complication that results in the donor's bone marrow cells attacking the new body.
I improved over the next two weeks and was sent home. I thought the worst was behind me, but I was wrong. One month later I developed severe headaches and a lack of appetite. I was readmitted and diagnosed with bacterial meningitis.
I began to lose weight rapidly. I lost 12 pounds in five days. After multiple negative tests, I received a diagnosis that confirmed my worst fear: a severe case of lower colon GVHD. The severity of my case made my survival questionable.
There is currently no cure for GVHD, so I was put on a high dose of prednisone to reduce the inflammation. Prednisone saved my life, but the side-effects made my life miserable. On top of receiving nutrition through a tube in my chest, my diet consisted of white rice and plain noodles to help my gut heal. Unfortunately, the prednisone made me extremely hungry. I was sleeping two to three hours each night and constantly researching treatment options for GVHD.
Around this time I was taking an online religion class at CMU. The course, REL 334: Death and Dying, was built around the textbook, "The last dance: Encountering death and dying." There was something therapeutic about writing about death and dying, as I stood with what felt like one foot in the grave. I learned that culture in the United States treats the topic of death as taboo. Other cultures see death much differently, even celebrating and embracing its inevitability.
The next year was the hardest year of my life. Because weakened immune system was weak, I was in isolation and couldn’t return to school. I struggled with depression watching my friends graduate, while I was at home watching Netflix and wearing a mask out in public.
I finally returned to school in Fall 2018 against my doctor's advice to finish my last two semesters. Having almost two years off made the transition difficult. I successfully survived my first semester, not without struggles and an MDS relapse scare, but this final semester of my undergraduate career has been the most difficult.
Halfway through the semester I got bacterial meningitis and was hospitalized. Just a month ago, I was admitted once again with similar symptoms, but the doctors couldn’t pinpoint my illness. After getting out of the hospital, I had many assignments to catch up on. I worked diligently to catch up, and I am proud to say that I did it. I will graduate from college.
Our time here is precious. Our life is fragile. I have had many people call me a fighter or a warrior, but I am done fighting FA. My disease will never go away. I will never fight it and win, so instead, I've decided to dance as if my life depended on it.