This I Believe

Patricia - East Syracuse, New York
Entered on February 6, 2008

I’ll be glad to see March come again this year. In March 2004, I knew that I was sick, that something was wrong–but I didn’t know yet that I had Stage IV rectal cancer. So I watched all the colorectal cancer (CRC) awareness ads and thought “well, whatever is happening, at least it isn’t that.”

But it was that. By April 20, about 8 weeks after my symptoms started, the doctors were getting suspicious. By April 30, they knew–and by May 3, I was in the first treatment of 16 rounds of FULFOX plus Avastin, and started on a journey none of us wants to take.

Now, almost four years into that journey, I am a survivor, out of remission and facing a new surgery and another round of treatment. Like many of you, I get calls to action, emails and all sorts of cancer advocacy awareness messages. I answer them all. I advocate locally, I work with survivors, I participate in CRC education to the extent that time and life permit. But every year, some marketing advisor convinces nearly every advocacy group to put forward the story of some young person who has lost his life or who is valiantly fighting this disease. The slant is always the same– ‘isn’t it terrible that someone SO YOUNG should have to face this disease?’

Yes, it is terrible. However…

It is terrible that anyone, of any age–married or single, parent or childless–has to face, fight and maybe deal with dying from CRC. CRC is preventable and treatable. I understand the need to emphasize that the prevention must start much earlier than age 50, and that screenings should be available to people regardless of age, sex or insurance coverage. But unfortunately, these awareness campaigns do every CRC patient a disservice by focusing on the tragedy of getting diagnosed or dying young. The tragedy of fighting and possibly dying from a preventable disease doesn’t discriminate based on age.

I’d like to ask all of us, in our advocacy and cancer education, to avoid basing our message on pity-based-on-age. If we try to educate with ‘look what happened to

this poor young person,’ it follows that it’s somehow less bad that cancer happened to someone older. That just fosters even more dangerous misconceptions!

It is not inherently more terrible or more tragic to be a cancer patient in his 20s than it is to be a cancer patient in his 30s, 40s, 50s, or older. It is not inherently more terrible that the patient is parenting young kids versus. parenting older kids, putting kids through college, childless but part of a loving family, on the other end of the equation caring for aging parents, or utterly alone. It is not more terrible to become a patient at the beginning of your adult life than it is to be diagnosed at the height of your career, or diagnosed at the start of what you had hoped would be an active retirement.

I was 48, at a career high point. My oldest nephew was almost through college and planning to marry within a year. His younger brother was finishing his senior year in high school, entering college in the fall. I was trying to help my parents negotiate my father’s dementia diagnosis, training two promising dogs, and shifting gears financially so that I could retire between 52 and 55.

My diagnosis meant that I had to place my younger dog in another home, miss special family occasions when I was too ill to participate, give up the fast track I’d been on at my job, and sometimes leave my parents to sort out their own medical and financial issues (not always in a good way.) Because of the costs of fighting CRC, retiring at 52, or even 55, is now out of the question. If I live to 55, the only way I could afford to retire would be on long-term disability. That wasn’t the retirement I’ve always planned.

When against all odds, the surgeries and chemo that were supposed to help me manage the end of my life actually worked, and extended my life into a remission, it was like getting a second shot at the things I’d been unable to do during treatment. I was able to take my tragedy and turn it around…at least for a few months. But my story is no less tragic than someone who was diagnosed at an earlier age, or someone who was older, or someone with kids living at home, or someone who never married. All of our stories are valid. None of our stories is more tragic than another–they are just different.

It is terrible that any of us had to become a patient, whenever and under whatever conditions it happened. But all of us have the ability to tell our stories, and make a difference, whatever those stories are.

So please, in our efforts to advocate and educate and gain support for our goals of increasing funding for cancer research and CRC screenings, let’s not reinforce ‘the tragedy of dying young.’ The tragedy we should try to hit is that any one has to become a cancer patient. The tragedy is that anyone of any age dies because diagnosis was too late, or treatments failed. We all need to tell that story. To do it, we must stop focusing on the

heartbreak of the diagnosed young parent as the way to make a difference. The difference we can make in cancer education is that CRC can affect everyone, even thought it doesn’t have to affect anyone…