Written on July 28, 2018 for Summit Quest’s “Voices Over Cancer” Annual Publication
How can I fit a three year journey on to these pages? I thought that as the days, months, and years went by that talking about my cancer journey would get easier. It never does.
In April 2015, I was finishing my last semester of graduate school at the University of Georgia. It was a whirlwind. I was so excited to finally be graduating. A few finals, some papers, and then walking across that stage! Not so fast, though.
I made an appointment with my doctor at the University Health Center after noticing some bumps in my neck that had been there for a few months. After some blood work and a physical examination, he came back into the room looking concerned. He said it could be anything from an infection to lymphoma. Lymphoma? Like cancer? Whoa. It just got real.
We went into high gear. I had turned 26 at the beginning of April so I had a month to find insurance before I was removed from my parents’ insurance plan. On top of trying to finish my degree and the road to diagnosis, I was also on a time crunch to find insurance coverage. I am so grateful that the Affordable Care Act had put a restriction on covering patients with pre-existing conditions. Otherwise, I would not have been so lucky.
After the blood work, biopsies, and tests, my initial consultation with my first oncologist led to an official diagnosis on April 28, 2015. “You have cancer.” It was Stage 3 Hodgkin’s Disease to be exact. They told me not to worry because blood cancers were the easiest ones to treat. The team assured me that I would be cancer free after six months of chemotherapy. Six months? That’s doable. I walked across the stage at graduation on May 8 and began chemotherapy on May 13.
Fast forward three years.
That six month timeline was a lie. I had failed the first line of treatment for Hodgkin’s. I failed the second line of treatment. I failed salvage treatment. My doctors were at a loss. My parents didn’t understand. Why was it that other Hodgkin’s patients were in remission after six months of treatment but I’m still here three years later with a team of doctors who had no idea what the next step was?
Year 2. After keeping me alive with an experimental immunotherapy drug, Brentuximab, my team decided to move forward with a stem cell transplant using my own cells to try to reboot my immune system. Long story short, it didn’t work. I immediately relapsed and the cancer had metastasized to my bones. I had two weeks of spinal radiation and went back on Brentuximab until they could figure out what to do.
Year 3. Yes, it took them almost a year before they decided on my next course of treatment. The Brentuximab could keep the cancer under control, but it would not get rid of it in the long run. I started another round of chemotherapy that is typically used for non-Hodgkin’s Lymphoma and then I was placed on a clinical trial after that. A few months later, I was finally declared in remission on February 8, 2018.
Having such an aggressive form of Hodgkin’s, my doctors wanted to make sure it was never going to come back. So it was time for another stem cell transplant. This time around, I needed a donor. Being a minority, we knew it’d be tough to find a donor through the bone marrow registry. I only have one sister so there was only a 25% chance that she would be a match. With today’s medical advancements though, we didn’t need a full match. We finally lucked out and got some good news. My sister was a perfect match!
After pre-transplant conditioning of high dose chemotherapy and full body radiation, we were ready for transplant #2. My new birthday landed on March 1, 2018. I stayed in the hospital for a month before I was discharged for my 100 days of post-transplant isolation.
Although I am a few months out from the transplant and still in remission, the treatment continues. Brentuximab has now been approved by the FDA as a first line of treatment for Hodgkin’s patients. I’d like to think that I played a role in that. I will be receiving Brentuximab infusions for the next year, as long as the side effects don’t get too bad. I am still fighting with fatigue, nausea, vomiting, neuropathy, insomnia, unstable weight loss and gain, chronic pain, hand tremors and graft versus host disease.
There are good days and bad days. You just never know which it will be until you wake up in the morning. I have been on this rollercoaster for so long. Now I know what everyone meant when they said you have to find your new normal. I have spent a long time mourning the person I used to be. As a young adult cancer survivor, I have faced some unique challenges from trying to graduate while on the road to a diagnosis, trying to find employment, trying to find insurance, and even dating, like a “normal” 20-something year old should be doing during this time in her life.
The road has been longer than expected. I’ve met some great people along the way. I’ve lost some great people along the way. The only thing that got me through it all these years was knowing that whatever I had to go through would be one less thing for the next patient to endure.
Honestly, I am not one of those people who is happy to have had this experience. Yes, I did learn a lot. But if I could get those beautiful years of being young in my twenties back, I would want to live it cancer-free, without the doctor’s visits, hospitalization, chemotherapy, radiation. I wouldn’t wish this experience on anyone.
That is the reality of living with cancer. As for who I am now, I am still trying to figure that piece out. Being in remission isn’t as lovely as people may want it to be. Every cough, every swollen lymph node, every painful movement, even a runny nose, triggers fear and worry. Like one of my fellow survivors said the other night in our support group, “We were fighting to beat the cancer. Now we are fighting to stay in remission.”