Somehow I find it hard to begin both with the story of my cancer diagnosis and to begin life again after remission. I think this feeling will be with me for quite some time.
Shortly after celebrating my 33rd birthday in which I sent out a punny “Jesus Year” party invitation, I found myself in a position where the rest of my life was met with a question mark in bold. I rebuke the idea of getting “karma cancer” for my cheeky e-vite but the truth was I had it and I had to take it on, quickly.
When I learned that I was diagnosed with Ph+ chromosome acute lymphoblastic leukemia (Ph+ ALL). I was terrified before going to sleep each night with the real fear that I might not wake up again. Since it was what felt like blood cancer at hyper speed, my doctor said he couldn’t stage it like other cancers that I was more familiar with. I was told I had to move quickly to avoid it spreading to my brain. Thanks to my amazing medical team at NYU Langone who had access to the latest resources, new research studies and advancements in blood cancer treatments funded by Blood Cancer United, I was assured a successful outcome was possible. I had a chance.
My oncologist told me that 10 years ago, he wouldn’t feel confident that I would survive but with the new advancements and treatments, though not entirely perfect, he strongly believed I would live a long healthy life. So I trusted him, I went through chemo, I was lucky to have access to immunotherapy, and my mother was able to donate her bone marrow. Because of that care, the cancer diagnosis in June of 2023 transformed to a remission date, stamped in August 2023.
This was just the beginning of my affiliation with Blood Cancer United. I attended my first Blood Cancer United Light The Night Event the summer of 2024. My core caregivers, my aunt and my big brother attended, alongside my little rays of sunshine - my nephew and my niece. I remember I was still in shock that I was there, how grand the gathering was and that I was actually holding a white survivor’s lantern. I can still picture my nephew guiding me through the crowd to join other attendees in the middle of the event where he nudged my elbow, proudly encouraging me to raise my lantern. I love that Blood Cancer United gave us that special moment together.
As I reentered my the world, my life, my routine, with Bambi legs, things began to feel somewhat "normal." Remission hit me almost as fast as the diagnosis. Just like that, as if it never happened, but it did and now I am dealing with chronic Graft Versus Host Disease (GVHD), a side effect of the bone marrow transplant. This life saving method is now my latest challenge, a challenge that Blood Cancer United understands and is funding research to help tackle.
In addition to the new science behind GVHD treatments emerging from this research, Blood Cancer United also gifted me with a community that has been healing me in numerous ways beyond medically. Mentally, emotionally, and physically, Blood Cancer United’s Team In Training program has been there for me in ways I didn’t know I needed. Training with this team for my first ever marathon in the city that saved me will forever be a core memory. They showed up not only as coaches, teammates and friends but as a light I hope to see in more people, especially during such dark days in our society. With them, I ran through world problems and personal pains.
One example that resonated with me the most is a moment with one of my couches. GVHD affects certain areas in my body like my joints and eyes. That Saturday, during one of my first double digit long runs with TNT, my joints started to cramp up in Central Park. The physical pain and constant reminder of new limitations become overwhelming. As I started to cry, I couldn’t produce tears (another effect of GVHD). That caused me to choke up. I had never had that feeling ever before, I couldn’t breath let alone run.
My coach noticed and we stopped together, we paused our Garmin watches and sat in the grass where she gave me electrolytes and a pep talk. She was patient with me as I stretched out my joints and consoled me, understanding that the root of my emotional state was deeper than a runner’s cramp. After taking a few moments to catch my breath, we finished the run together. We ended up meeting with our teammate (one of my new favorite people) who was waiting for us at the end of the course. That’s what I picture when I think of Blood Cancer United. This is why for as long as I’m around, I will continue to support this community.
Blood Cancer United provides more than what meets the eyes and I am grateful to be a living example of their efforts in plain sight.
Rachael
Ph+ chromosome acute lymphoblastic leukemia (Ph+ ALL)
