Celebrating National Cancer Survivors Day
The lucky unlucky
The first Sunday in June marks National Cancer Survivors Day in the US.
Why do we celebrate survivors? We are “warriors”, “fighters”. I feel less like a warrior than simply someone who went to my appointments and let medical professionals do things to me. We survivors managed not to die of our disease. We are the lucky unlucky.
According to the National Cancer Society, approximately 40% of people in the US will develop cancer during their lifetime. 20% of people in the US will die of cancer. It’s the second leading cause of death, behind cardiovascular disease.
My cancer, Hodgkin’s lymphoma, is one of the most curable. The doctor told me, “It’s the good kind.” Stage I, or localized, Hodgkin’s has a 93% 5-year survival rate. Statistics fail to comfort those diagnosed with a rare disease. A person has only 0.2% chance of developing Hodgkin’s lymphoma during their lifetime. 99.8% chance of not getting it.
I’m a lucky unlucky person to get the “good cancer” and survive it nine years and counting.
I’m not the same person who walked into the doctor’s office that February Wednesday afternoon. I emerged from the fire of treatment bald, weak, and a few pounds lighter. It started a metamorphosis that continues nearly a decade later.
Visible Scars
I wear medals of honor commemorating my treatment. A small scar inside my left hip reminds me of the cancerous inguinal lymph nodes surgically removed. “It’s probably nothing, but we will biopsy just in case.” When stretching that left hip flexor during yoga, I feel extra tightness from the scar tissue and radiation.
A one-inch scar, once angry red, now chilled-out white, marks a small dent above my right breast. This is where the surgeon carved out space for my chemo port. The device spared the veins in my arms, giving the medicine direct bloodstream access to save my life. The port was in and out in five months, a good sign. The doctors didn’t think I’d need a second tour.
A dark shadow resembling a bruise marks my left tricep. Before my first chemo treatment, the nurse tested me for Bleomycin allergy. She injected the drug into my arm, watching. Searing pain absent anaphylactic reaction meant it was fine (?!?) to continue. I’m not sure how it’s ok for something that melted my flesh to be in my veins, but I’m alive.
Sometimes my left ankle and foot feel a bit puffy. Perhaps from missing lymph nodes?
My reminders are subtle compared to survivors missing organs, breasts, or limbs. Many endure lifelong neuropathy, fatigue, digestive changes—a drug commercial disclaimer for life. The reminders are unnecessary.
Hidden Scars
Chemotherapy and radiation change us below the surface. Cellular damage is the price for survival. I received eight treatments of ABVD chemotherapy followed by 16 doses of radiation.
As a Hodgkin’s lymphoma survivor, I may be twice as likely as the average person to get cancer again. The chart below shows the rate of a second (subsequent) cancer diagnosis, by gender and primary site of cancer.
The observed-to-expected (O/E) ratio scores below mean:
1 = equally likely as someone demographically similar who hasn’t had cancer
2 = twice as likely
The chemotherapy drug Adriamycin (the “A”) increases my risk of heart disease. Bleomycin (the “B”) can cause lung toxicity, sometimes triggered by receiving pure oxygen. Some warn against scuba diving after receiving bleomycin. I couldn’t find anything definitive against it, so I decided to try it in 2019. I lived! A lucky unlucky.
Radiation exposure damages cells, increasing cancer risk in exposed areas. That one already bit me. (Lucky) unlucky again. Last year, a biopsy of a radiation-treated area revealed carcinoma in situ, a high grade “pre-cancer”. After two surgeries to cut it out and an angsty few months, I had clear margins. No chemo needed. Thwarted again, this time.
Last year, I attended an online survivorship conference. One of the speakers shared that many cancer survivors go through their most difficult emotions after completing treatment. No longer in active treatment, no steps to follow, a survivor with fresh scars and lingering side effects must return to normal life.
The ghost of cancer haunts. Will my body betray me again? The dull buzz of anxiety amplifies approaching scan dates. Scanxiety. The prize for good scans is eventually no more scans, which carries its own stress. How do I know I’m still a lucky unlucky?
Perhaps… just lucky
I came into treatment a battered workaholic parading as superwoman. My body rebelled. My chemo was every other Monday, with a week off in between to allow me to rebuild strength. I didn’t know how I would feel during that “good” week, so I decided to take a continuous 3-week leave and play it by ear with intermittent leave after that.
After the devastation of diagnosis, telling people I loved, putting on a brave face, and taking a few days to organize work and life on hold, I braced for the first poisoning. I emerged from chemo malaise a few days later feeling surprisingly fine.
The next week was bliss. I’d just been through a mini emotional and physical hell. It felt like the first morning after a weeks-long head cold when I finally slept through the night and could breathe freely. I had no treatment, no work, no responsibility. I went to the movies—two movies in one Wednesday afternoon—by myself!. I went to Zumba. I met up with friends for lunch. I took walks in the budding spring sunshine, a respite before dose number two.
One of my first weeks back at work full time, I remember one of the managers reporting to me coming into my office seeking drama veiled as guidance. There was a big dispute over an administrative work rule. A few months earlier, I would have jumped into problem solving mode, even when I didn’t need to get involved. I couldn’t conjure an ounce of giving a shit. I remember telling her I really didn’t care, and she could do what she felt was best.
Cancer gave me an offramp. Shortly after, I advocated for a new role at work allowing me to build my department’s first dedicated analytics team. I took a step back from a stressful 24/7/365 operational leadership role to create my dream job.
When I finished treatment, a coworker who was also a running coach said, “The hard part’s done. Now it’s time to train.” She signed me up for a race. I started training and completed my first half marathon one year after my first chemo treatment. Consistent cardio and strength training now have me in the best shape of my life. The kid who dreaded field day is now an athlete.
A year later, I started dancing again. I rediscovered my love of music and movement. I met a community of people who are now some of my closest friends. I made space for joy, creativity, and playfulness.
Most importantly, cancer helped me cultivate empathy. My own suffering opened my eyes to others' struggles, and how to be there for people. I knew I could never repay the generosity and love from those who supported me during treatment. Instead, I try to pay it forward.
In 2020, when my employer offered early retirement during the COVID-19 crisis, I took the leap. I took a one-year sabbatical, a mid-life “gap year”. My health doesn’t guarantee me traditional retirement years. Really, no one’s does.
I want to enjoy life now, not toil away for those future theoretical years.
That started me on this new path, stumbling towards clarity.
Despite the scars, visible and not, despite the lingering ghost, despite suffering endured and possibly to come, I still say:
Cancer is the best thing that ever happened to me.
It gave me a path to create a new body, a new career, a new life.
I share this story for anyone still in the hard part. Look forward to creating moments of bliss in between suffering. Look forward to seeing waterfalls. Look forward to the life you can create, while you still have time.
Beautiful story and beautifully written.
Your writing on this subject stopped me in my tracks. Claire, thank you so much for this beautiful, impactful, thought-provoking piece. Speaking of lucky, we as readers are lucky to receive your reflections. ❤️