A Story of Survivorship after Childhood Cancer

In our guest blog series, we hear from Jana, a childhood cancer survivor as she navigates through adulthood after her cancer diagnosis. 

     Many remember that summer after high school graduation as one filled with late nights, laughter, tears, and intense goodbyes as lifelong friends part ways. Along with these happy memories I also remember agonizing pain in my back that I couldn’t stretch, strengthen, or medicate my way out of. I persevered through the pain to keep pace with my friends, working late nights at a summer job, staying out until curfew, and checking off the boxes on my college to-do list. Just a few weeks before my scheduled move out of my childhood home and into the unknown but exciting world of independence, an MRI confirmed what was causing such severe pain: a mass pressing against my spine. The plan I had so meticulously prepared for was derailed in one moment. Subsequent tests diagnosed me with Stage IV Non-Hodgkin’s Lymphoma just a few days shy of my 18th birthday.

Jana

     I shrunk back into my childhood bedroom and unpacked my college bags, trying to prepare myself for what was to come. What followed was a year of intensive chemotherapy, followed by a relapse, preparations for a bone marrow biopsy, declaration that the biopsy was unnecessary 3 days before it was scheduled, and then 6 final months of chemotherapy. Recalling memories from this time is difficult and emotion-filled, but many more are absent from my mind entirely and only remembered by family members that were by my side throughout the journey.
     What I haven’t blocked out are the almost nine years since treatment ended, living my life as a young adult who was diagnosed with cancer at the precipice of independence. Those first few years after treatment were very much about figuring out how to reintegrate back into society. Despite your best attempts, you can’t just beat cancer and then leave it in the past. For me it stayed with me by completely altering my career choice, life goals, maturity level, and outlook on life. It also stayed with me physically by way of some intense side effects.
     My immune system never quite worked properly, and after countless rounds of infections and antibiotics, I was sent to an immunologist and it was determined that one of the chemo drugs that helped save my life also permanently knocked my immune system out. I was left with only one choice if I wanted to stay healthy: receive monthly infusions to replace my absent immune cells. My left hip also began causing me intense pain and an X-ray showed that high doses of prednisone had completely cut off blood supply to my hip joint with no hope of revitalization. When my limp and pain became unbearable, I finally received a hip replacement at the early age of 25. Even after a cancer diagnosis, these are not easy diagnoses to swallow as a girl in her early twenties who otherwise appeared perfectly healthy.
     Early this year I went to my first oncology appointment intended for prevention and survivorship care. I met with an oncologist I hadn’t seen since I was in active treatment and shared with her how I had been married for three years and gave birth to a healthy and beautiful baby one year ago. Telling your oncologist about milestones like a wedding and becoming a mother is powerful, as you owe them your life and making it to places at one point no one thought you would.
       In this appointment, she explained that childhood cancer survivors are largely in uncharted territory as the oldest survivors are now in their 50’s and long-term side effects for many of the drugs used are only just being researched. The most major side effects she knew about I either already had (immune deficiency and disease of my hip joints) or completely defied (ability to have my own child). We talked about the difficulties I will deal with because of what I’ve been through. For example, the financial impact of being a cancer survivor. My infusions that reduce my risk of life-threatening infections cost $4,000 per month. I have already found myself having to decline risky career decisions or taking extra time off to be with my new baby because of the crippling medical debt I would face without comprehensive insurance coverage. Even in a job that offers an insurance package that is superior to other options I have explored, I still must budget for meeting my $3,500 deductible at the start of every year.
     As a young adult making an average income in Maine, piling this cost on top of my student loan debt and necessary monthly bills means I am unable to save to buy a house or for retirement. Moving my career in a different direction always brings up concerns about having to switch to a new insurance plan, meaning I would have to satisfy two deductibles in one year. I could also face the possibility of not receiving as much flexibility to work out of an infusion center one day each month or leave at various times for appointments with my long list of specialists. Instead of additional assistance for those of us who has survived a traumatic and life-threatening event such as cancer, we face even more restrictions and burdens than people with no difficult medical history.
     At the end of this survivor’s appointment, I asked the question that always lingers in the back of a cancer survivor’s mind: should I prepare myself to get cancer again in my lifetime? My physician confidently answered “no” and supplied me with information about how to best take care of myself with prevention to ensure I wasn’t at a much higher risk than anyone else in the population. Although that appointment brought up old memories of the most physically and emotionally taxing times in my life, it also left me feeling empowered to go out and live my fullest life without fear of what may come next.
       For me, finding physical health despite my obstacles seemed easy because there was a straightforward plan for that, and I was familiar with following treatment plans. What was not easy was healing my mental health. It’s easy to focus on how your body is feeling as a cancer survivor and accepting anxiety or depression as your new normal. I want to help others recognize when you need help and to find the strength to accept it.  I could never have walked my path alone- my parents, my sister, my best friends and my providers were all right there beside me. I think of people who are not as fortunate to have certain supports in place like close access to treatment, stable socioeconomic status, and loving relationships to lean on.
     When I was first diagnosed I stated, “My whole life will be about cancer.”  I was right in saying this, but not because it’s only filled with doctor’s appointments and various chronic conditions, but because this experience shaped me to hold wisdom that someone my age does not typically hold, to be able to believe I can overcome any difficulty if I just persevere through the pain and discomfort, to experience the overwhelming joy that having my own child brings even on days when my patience wears thin, to strive to be my healthiest self physically and psychologically even if that means making difficult “right” decisions, and to know that having the opportunity to live beyond a life threatening experience means I’m motivated each day to live as my best self.

Jana
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