My immune system turns three years old on July 21st. I successfully completed chemotherapy for Hodgkin lymphoma in 2009. My case was textbook. I breezed through the treatments, and moved on. Five years later, my medical team and I watched my cancer slowly come back over a yearlong period, even before it could be diagnosed. I went through a terrifying year of pain and uncertainty as the cancer slowly took hold again, cancer is very good at hiding what it truly is.
In May of 2014 an APRN told me my cancer was back. It was one of the worst days of my life. She was wrong; a biopsy came back no evidence of disease. However, no one could explain why my left leg was swelling. It continually got worse.
By August of 2014, I was diagnosed with a blood clot from my knee to hip and started blood thinners. But my leg continued swelling. An MRI showed three more blood clots in my inferior vena cava. They changed my medication and took a more aggressive approach.
During all of this, I continued riding my horses in 25-mile competitive rides. Undeniably, something was very wrong with me, but no medical test or physician could figure it out. Then, in April 2015, I was diagnosed with relapsed Hodgkin lymphoma, all in the lymph nodes of the left pelvic region.
The next five months were both a whirlwind and some of the longest days I’ve known. Medical appointments, three in-patient hospital stays for chemotherapy, stem cell harvest, PET scans that showed the chemotherapy wasn’t fully effective, stem cell transplant, radiation, and finally a maintenance chemotherapy. I was no longer textbook. I now have oncologists at three different cancer centers on my team.
After all of that, the stem cell transplant was anti-climatic, similar to any other infusion day. But the recovery after the transplant will not be forgotten. I was an in-patient at Yale following transplant, and lost 15 pounds in three days, as my medical team struggled to stabilize me, and protect my immune system that had been wiped clean.
I had no energy – getting up, showered and dressed was an achievement. But I kept trying to move forward, watching the ride calendar; live streaming horse shows from my hospital bed, and negotiating with myself about when I would be ready to get back on a horse.
I went back to work full-time at 27 days post stem cell transplant. At Day 73 post stem cell transplant, I was competing in a 25-mile competitive trail ride in Maine on one of my Morgan horses. Yes, my doctors knew where I was, and I did ride with a friend who is a nurse. She is a diabetes nurse, but medical professional nonetheless!
I still had one radiation treatment left, but I was determined to get back out there. I remember being exhausted on the trail. I was grateful to be out there, considering everything that I had been through in the last five months. Was it smart? No. Did I push too hard? Probably. Would I do it again? Yes.
A couple of months later, I started 16 rounds of maintenance chemotherapy. Looking back on it all now, I probably should have given myself more time to rest and heal. But we all need motivation; something that gets us up in the morning and keeps us moving forward; something to look forward to, and to keep fighting for. We also need to feel normal, and feel that we have some sort of control over our lives. I’ve learned that control is an illusion, and we really just need to make the most of the moments we are given.
I ride horses; it’s been a constant pursuit throughout my life. Whether it’s family, a sport, traveling, gardening, art, or anything in between, cultivate your passion, and let it feed your spirit through the good times and the bad.
My body has already failed me twice, and that scares me. When I am out on the trail riding one of my horses, I am focused. The worries and stress of life melt away as I ride each stride, and anticipate what my horse will need to successfully complete the miles ahead. The resiliency I developed facing cancer helped me as I competed in my first one-day 50-mile ride in 2017 (resiliency and a fantastic group of friends).
One of my challenges is striking that careful balance between living in the now and planning for a future that seems fairly uncertain given my medical history. But here’s the thing – I have a reason to keep moving forward. There is a ride schedule to peruse, and horses to keep in shape. And that alone may be the thing that quiets the voices of fear and worry in my head, and lets me focus on the future.
After the stem cell transplant, I jumped headfirst back into work and volunteer organizations as well. I completely overbooked myself, trying to make up for lost time. In the three years since, I’ve learned how important down time really is, and what the most important parts of life really are for me. In the end, no one, including me, is going to care how many boards I volunteered for, or hours I worked at my job. I need to find more of the moments that matter; the moments that build my spirit and sustain me through the hard times.
So on the third anniversary of my stem cell transplant, I’ll be on the side of a mountain in Vermont, competing in a 50-mile ride with my Morgan horse. My goal is to finish with a fit and happy horse, and, I am going to enjoy the ride.