You never know how you’ll respond when you’re faced with a life-threatening diagnosis. On December 13, 2016, I was diagnosed with leukemia. That was the day my journey began. A journey full of helplessness, fight, hope, anger, depression, anxiety, weakness, nausea, and many more emotions.
Also, being only 16 years old when diagnosed with cancer seemed to only heighten those emotions. I mean, I was so used to my mom always being able to help or to “fix it”, but this was out of both of our control.
I felt so angry. I was too young. I wasn’t ready to die. I hadn’t even experienced living life yet! So, it was time I began fighting.
I went through my first round of chemo and was in remission after that. There was no trace of leukemia in my peripheral blood or my bone marrow, but we still went on with the next 2 rounds of chemo.
Shortly after those rounds, the doctors relayed the news that I had 4 different types of genetic mutations in my blood. These mutations made it likely that I would relapse in the future. So, how do you get rid of those mutations and lower the risk of relapse? That’s when they advised me to have a bone marrow transplant. They reassured me that a bone marrow transplant would lower the risk of relapse, but since the mutations are genetic, it’s still a possibility my leukemia could return.
My bone marrow transplant began with a lot of uncertainty and fear. It also began with signing consent forms to have the bone marrow of a 22-year-old male transplanted in me. After all the consents were signed, we began the process of prepping my body for transplant day and starting the chemo; but this chemo was in much larger doses and a whole lot stronger. I mean, it had to be strong enough to completely wipe out my current bone marrow so that the new bone marrow would engraft.
After the bone marrow was transplanted and engrafted, that’s when I spent the next 4 ½ months inpatient and in and out of ICU fighting to stay alive. I had kidney failure and heart failure. I also had a 3-way-foley catheter for 2 months due to the inner lining of my bladder shredding from the chemo. It completely wiped out my immune system and made me not able to fight off a very minor/common virus.
I was also on a ventilator at one point during my transplant due to fluid being on my lungs. That was the scariest part of transplant — not knowing if I would recover and ever wake up. Not knowing if that was the last time that I’d be able to tell my mom I love her. The unknown was horrifying.
Soon after, I began a new journey. A journey that seemed just as hard of a fight as leukemia. My new bone marrow that was transplanted began rejecting my body and causing various organ failures. They put me on very high doses of steroids and immunosuppressants (a medicine to make your immune system weak and unable to fight off common colds or infections.)
I became so tired of the constant battle with trying to keep my donor’s cells happy. I felt like I would do everything in my power to try and remain as healthy as possible (taking my meds on time every day, avoiding anything that could potentially flare up GVHD, staying away from illnesses, and being overly cautious of germs and handwashing nonstop). But it was never enough.
The steroids made me gain weight very fast to the point where I’m covered in stretch marks. I was so embarrassed to show my face to the public. I had anxiety at the thought of walking into the grocery store. Having a steroid face and body was way more humiliating than being bald.
I was so disgusted by myself that I avoided family events or even seeing my friends. I isolated myself from the world. This gave me way more time than I needed to think about my life.
I began contemplating my purpose and what my future holds. Was I ever going to be done with treatment? It felt never ending, even though it had only been 3 years. I was tired, physically and mentally. I yearned for normalcy. All I wanted was a decent quality of life.
Not only that, I was diagnosed with Crohn’s Disease (an autoimmune disease of the gut) which was caused from my new immune system disagreeing with my organs. I will now have to do treatment indefinitely for this disease. This was hard for me to adapt to. I am a teenager, and I didn’t want to adapt to this new life of taking medicine every day.
Everything I deal with to this day is because I chose to have a bone marrow transplant. I chose to live. I chose to not let cancer determine my time of death.
Unfortunately, this is the price I had to pay to survive. I spend every day thankful to spend another day with my friends and family. Thanks to my care team, I get to continue experiencing life and the joys that come with living.