“My life changed forever on October 29th, 2002. I was diagnosed with acute myeloid leukemia at the age of six and given a 50 percent chance of survival. Make no mistake, my six- to eight-year-old self was an absolute badass. I handled hospital stays, Hickman infections, blood clots, low blood counts, transfusions, spinal taps and surgeries with so much strength, that I often look up to my childhood self with awe and admiration. I endured numerous rounds of chemotherapy during my initial diagnosis and continued rounds of chemotherapy with added full body radiation when I relapsed. My relapse was essentially a guarantee as I always needed a bone marrow transplant, however my family members weren’t a match with me. My medical team thankfully found an unrelated donor that graciously accepted the responsibility of giving me the necessary stem cells to fight for a second chance at life.
Long story short, battling cancer was a bitch, but I crushed it… twice – the most difficult part of my journey has been the chronic aftereffects of surviving my 50/50 diagnosis.
When receiving a transplant (especially from an unrelated donor), you are at risk for graft versus host disease, or GVHD. GVHD is a disease where your white blood cells attack the new cells in your body because that is their job- they attack foreign entities to protect you. Your cells do not know that they are attacking the new, cancer-free blood. These white blood cells, therefore, attack in full force and can negatively affect tissues, organs, joints, et cetera and the side effects include itchiness, pain, body and mouth sores, tightened skin, hyperpigmentation and peeling skin, and joint restriction. For me, GVHD has affected my eyes, mouth, and joints, but the biggest organ affected has been my skin. GVHD entered my life immediately after my transplant and the only solution to calm my white blood cells down was a prescription for massive amounts of prednisone. The GVHD caused SEVERE hyperpigmentation from my scalp to my toes, but I also gained an excessive amount of weight and blew up like a balloon because of the drugs that were supposed to fix my GVHD. I didn’t realize at the time how much I had physically changed but I also unconsciously stayed away from mirrors. Adults and kids alike made me acutely aware of the fact that I was now different. I was stared and laughed at and people pointed at me whenever I was in public. I began wearing long sleeves and leggings or pants so that I could make myself disappear as much as possible to the outside world. I avoided eye contact and cried often. My self-worth and confidence became nonexistent. I feared losing friends because I thought that they would realize that I wasn’t worth their time or effort, and I was ashamed anytime I looked in the mirror. Boys would either ignore me or use me to get to my friends and I truly never thought that I would experience a life worth living.
I was a lively, confident, and sassy six-year-old that had boy and girl friends. I wanted to be a doctor, have my own babies and was confident that all my dreams would come true. I would yell at bullies on the playground and blow kisses at my kindergarten crushes. As a preteen and teen, it became very apparent that this kid did not survive, and I lost all hope that I would find love or build the confidence in myself that I had had as a child. I knew I wouldn’t be able to have my own kids because of the chemotherapy and radiation that I endured, and I knew that even if I made friends or met a boy, that they could reject me at any moment because I looked different and would never be able to lead a stereotypically normal life. I felt (and still sometimes feel) isolated because I knew I wouldn’t ever meet someone that understood the intense feelings that I felt during every waking moment and mourned the person I could’ve been and the connections I could’ve had if I hadn’t had cancer.
I still sometimes feel isolated because my GVHD scarring is still very visible on my body, because I have stretch marks all over my body from my prednisone days and I still mourn the children that I will never get to personally have of my own. BUT if you’ve gained anything from my story, it’s that I do not give up. I pushed myself to grow into myself; I stopped covering up my body, advocated for myself by going to therapy, and gave myself grace throughout my journey. I signed up for dating apps, flirted with men, went on good and bad dates, and met the love of my life (who has accepted the fact that we may or may not be adopting eggs and having a surrogate to have babies. Who has also accepted my love for Harry Styles, my stretch marks and scars, and supports me during every doctor’s visit, procedure and health scare that I have to this day). I have nourished real, genuine relationships with friends and have pruned out individuals that ended up not having a positive impact on my well-being. I have active and open conversations about my journey and advocate for others to do the same. My life is not perfect, and my anxiety and depression can get the better of me like everyone else, but I can genuinely say that I have never been in such a beautiful and secure place.”
Taylor