Have you ever watched the Amazing Race TV show? Teams race across the globe, overcoming puzzles and challenges, for a $1M prize. Right at the end, after the winners have crossed the finishing line the host recites the statistics of their journey, listing numbers of countries, thousands of miles traveled and how long it took, punching the air with every statistic.
I feel like today I could use someone doing that for me, as I complete my final radiation treatment, and mark the end of my active therapy for male breast cancer.
“259 days since diagnosis, 15 chemo infusions, 35 doses of zofran, 1.2 liters of drained fluid, 30 radiation treatments, dozens of clinic visits, countless needle sticks …” he’d be saying as I stand there, panting at the finish line.
OK. So that didn’t happen, and I didn’t win $1M either. No, I got to do something much better. I got to ring a bell, a tradition here at MD Anderson that allows patients to mark the end of a treatment phase. And I got to do it with Irene, my wife and fellow breast cancer survivor at my side. Also there were members of the great team that has been delivering my radiation therapy over the past 6 weeks and friends from the Riders for the Cure motorcycle club. And to me that is a better finish than any race.
So how did it feel? Mostly there was relief at having successfully completed active treatment, with its attendant physical and emotional challenges, not to mention the demands of having to fit it in to a busy work and family life. It is good to be done, and to get a three month break before my next clinic visit. It is good to have beaten the disease back and to have gained what is hopefully years of breathing room.
At the same time, I acknowledge that a different phase of being a cancer patient, or perhaps now survivor, begins. And that is emotionally not so simple, because survivorship also has its challenges.
By coincidence, I finish my active treatment mid-way through the week that marks cancer survivorship. We started the week on June 1st, with the Ride for Life, a motorcycle ride that raises funds for the survivorship conference in the fall. There are events throughout the week celebrating survivors. But what does it mean to be a survivor?
Today you are encouraged to call yourself a survivor the day of your diagnosis. I have to say that didn’t really feel right to me. The day of my diagnosis I hadn’t survived anything, and there were more questions than answers, so I didn’t know that I would survive. Now, nearly 9 months later, I have survived some things and have a clearer picture of where I stand. Looking at the currently available data, the 5-year survival of people (alright, women) with my disease is more than 80%. So, I am now more comfortable with calling myself a survivor.
When I’m in a different mood I think of Monty Python, and the scene from the Holy Grail where the plague cart makes the rounds. To the delight of my 9-year old daughter when we recently saw Spamalot on the stage, the old man being placed unwillingly on the cart complains that he isn’t quite dead yet. That’s a pretty good operational definition of a cancer survivor – someone whose cancer hasn’t made them quite dead yet. I actually mean that somewhat seriously. I have watched my step-father battle progressing prostate cancer over the last 10+ years. He has beaten it back many times, and done so bravely. But it’s still there. And as I have said elsewhere, for those of us who get cancer at a relatively young age (I am 20 years younger than the median age of diagnosis for men with breast cancer) the fact that you have an 80% chance to live 5 years isn’t as comforting as it might be. I don’t know what my future holds. I haven’t sold my retirement yet, so I have not lost all faith in a longer term future. Of course I also recognize that all life shares this uncertainty. Perhaps a good definition of a cancer survivor is someone who is more aware of their mortality than many. And isn’t quite dead yet.
And that points to the mixed feelings I am experiencing now, as I transition from being an active cancer patient to being a cancer survivor. While you are doing your therapies you are actively fighting the disease. You are fully engaged, and feel satisfied that you are doing all you can. You’re focused on making it to that goal line, that finishing bell. Once you cross, and have caught your breat, you could begin to think that you are waiting for the cancer to come back. So another definition of being a cancer survivor is someone who remains engaged in the fight against cancer.
In a way I am lucky – I get to take a magic little pill every day, tamoxifen, which suppresses my cancer and so for the next 5+ years will get a little emotional benefit of continuing the fight. But even if you aren’t getting this kind of long-term therapy, you can remain engaged: you can take good care of yourself, both physically and emotionally. You can be a member of the cancer survivor community by advocating for cancer causes or by supporting others fighting cancer. You can remain informed, support research, and be counted.
To me the core of cancer survivorship is this: the realization that cancer changes most areas of your life, including your fundamental outlook. The skill of survivorship is to leverage the challenges, the misery and fear of it all into energy that allows you to move forward, to be there for your loved ones and perhaps to make a difference.