Survivorship: Don’t Ever Tell Me to Carpe this Diem!

There are few phrases I hate more than “Carpe Diem.” When I was diagnosed with cancer as a teenager, a well-meaning, kind family friend gave me a T-shirt with some artistic stick figures dancing in front of what I can best describe as an abstract, stained-glass-ish sunny forest with the words “Carpe Diem” plastered across the chest. I still, decades later, can close my eyes and see that shirt. And, yes, I still hate it. 

 

Why, you may ask, was I so offended by this gift that was meant to be a considerate gesture to an adolescent girl undergoing chemotherapy and radiation? I was so affronted by the idea that I should “seize the day” and live each day as if it were my last because I wasn’t even in high school yet! I didn’t have the time between bone marrow biopsies, spinal taps, chemo infusions, enzyme injections, blood tests, and swallowing fists full of pills to go frolic in a meadow. I wanted to live long enough to see my brothers, and I grow up together, go to college, have a career, and perhaps a family of my own if that was even possible. Living each day as if it were my last would be celebrating being a girl in junior high, which is miserable enough. Now imagine it being bald and seriously ill. 

 

Ultimately, I survived, and I have been a cancer survivor for the entirety of my adult life. To date, I have never frolicked in a meadow, as being a cancer survivor has come with its own significant set of challenges. When I went to college, I did not refer to myself as a cancer survivor, as I was not five years out from finishing my treatment. I would, for years, refer to myself as a former cancer patient because there was a very real chance I could relapse, develop a secondary cancer, or suffer from some serious short or long-term side effects of my treatment. In my mind, survivorship was reserved for those veterans who had come out of the other side of that potentially fatal morass and had the t-shirt to show for it.

 

What I have come to learn, however, is that just being on the other side of your diagnosis and living each day past knowing you have cancer makes you a survivor. I have been forced to think a lot about my own survivorship lately. I, like many women my age, have to prepare for the biological processes that come with middle age. On a call with my mother a few nights ago, I started laughing as I said to her, “It never occurred to me that I would actually age! Get old, yes, but not age!” As the majority of cancer survivors find, we have to navigate the long-term side effects of our various cancer treatments alongside all of the changes that accompany each life stage. 

 

I consider myself very fortunate in what I have had to face in my thirty years as a cancer survivor. Childhood and adolescent cancer survivors like myself have a 60–90% chance of developing at least one chronic health condition and a 20–80% chance of experiencing severe or life-threatening complications as adults. Yes, I was diagnosed with and treated for two chronic conditions. The first, which was expected from receiving cranial and spinal radiation as a young teenager, was ADD, with an onset expected in my mid-twenties. The second was secondary adrenal disorder, a condition identical to Addison’s disease, that resulted from my cranial radiation therapy, causing damage to my pituitary gland. I was also hospitalized in my senior year of college for not being able to breathe as I had developed hundreds of small blood clots in both lungs from being in bed with West Nile. I had a brand new immune system from chemo and radiation therapy, wiping out every immunity I had to anything. I thus could not fight off the tiny amount of West Nile in a mosquito bite I got near campus like everyone else my age. I subsequently had to be in bed for a couple of weeks, where I developed blood clots. I spent a year in pulmonary rehabilitation and finished my undergraduate degree. 

 

I know that some of you may struggle to see those parts of my medical history as “fortunate,” but keep in mind that I have been a cancer survivor for almost three-quarters of my life. I also have benefitted from many of the newer vaccines and public health interventions that were only available to the generations below me. Even though my brother gave me chicken pox in second grade, any immunity I developed before treatment was gone, so I got the chicken pox vaccine as a college student. I also qualified for the HPV vaccine in my late twenties, and I am grateful to be protected against three virulent female cancers.

 

Few things teach you more about yourself than having cancer. Honestly, every time I face an emergency, acute, or chronic health issue or condition, I say to myself, “Well, it isn’t as bad as two years of chemo and radiation, so let’s figure this out (not always that calmly).” My own cancer survivorship journey forced me to become my own advocate as the hospital where I was treated did not and still does not have a follow-up or survivor program or clinic. You do not have to piece together your own path. Let my experience inform yours.

 

Just like your cancer journey, survivorship is just as scary, unique, and rewarding. You learn things about yourself you never otherwise would, and that in and of itself is empowering. You never go back to who you were before being diagnosed with cancer but appreciate who you are becoming. One thing I, and a lot of cancer patients and survivors, forget is that, as humans, we are constantly growing and evolving, and that has to be part of the calculus when determining how to navigate cancer and survivorship. While we all may be fighting to kill, keep at bay, or prevent our malignancies from returning, our bodies and minds are growing in spite of it. I am here to remind you of that and help you live your best life wherever you are.