I never wanted to be an advocate. I’m a conflict-adverse introvert by nature. When my youngest son was born with Down syndrome, the title of Advocate was foisted upon me. I was also suddenly a Special Needs Mom. These were clubs I never signed up for.
Thrown neck-deep into the health system with a baby with medical issues, I quickly learned to speak up at specialists’ offices to get my questions answered. I figured out that most advocacy work is relationship-based, which means if you have a relationship with the person you are directing your advocacy efforts towards, things will go much better.
There is something magical and special about the holiday season. However, in December 2016, instead of hanging ornamental balls from the tree, I was in the thick of completing chemotherapy to battle the cancer that had spread from my testicles to my lymph nodes.
My battle with cancer isn’t the only history of trying times in the holiday season. In high school, I struggled with pretty severe clinical depression. One of my lowest points during my struggle with depression was around the holidays in 2007. I was angry, sad, apathetic, and just all around down. I was in therapy and on anti-depressants to help and eventually came through a stronger person. However, the holidays were something that helped me rally and keep on living.
I was diagnosed with Stage IIB Nonseminoma Testicular cancer in November 2016, at the ripe old age of 25. Along with surgery and chemo, I encountered the burden of the emotional journey that a cancer diagnosis includes.
Much to my wife’s chagrin, I’ve never been one to talk about my emotions. Blame it on society, my own stubbornness, or whatever other factor you want to point fingers at, but when it comes to my feelings, you’re not going to get much from me beyond “I’m fine.”
Cancer Survivorship – The Fight After the Fight and All of its Firsts
After our fights with cancer are over, we all want so badly to believe that everything is behind us and that life is going to get back to normal. Those first weeks and months after our cancer fights are such a precious time. It’s our first taste of freedom after having been wrongfully held hostage by cancer for so long. I had my life back, but as time and the months went on I realized that it wasn’t my old life that I had back, but rather an entirely new one. Cancer survivorship brings with it an entirely new set of life circumstances and a whole lot of firsts, many of which I was completely unprepared to handle or to deal with at all.
When heading to my urologist for my 5-year check-up for testicular cancer I wasn’t concerned at all from a cancer standpoint. Just two weeks earlier, I had returned from a spring break trip with my girlfriend and her daughter so I was completely relaxed. In fact, being a huge self-advocate, I had already requested my medical records from my CT scans, chest X-ray and tumor marker blood tests that I had a few days earlier so I knew all was fine. All that was left was the physical exam. However, in the preceding few months, I was feeling physically worse than any time since my diagnosis. Unbeknownst to me, I was suffering from a perfect storm.
Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood. Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families. Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship. His goal is simple: to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.