Sunday, August 30, 2009

Does Anyone Really Lose Their Battle With Cancer?

I think not. When someone dies of cancer, why do people say that they "lost their battle?" We don't hear of people "losing their battle" with heart disease, or diabetes, or high blood pressure, or obesity, or any other chronic or life threatening illness. So why cancer? Maybe it's the "battle" metaphor. In a war, someone has to lose. But aren't all diseases wars? And aren't many treatments wars too?  I never hear people say, "She lost her battle with chemotherapy," or radiation, or surgery, even though cancer treatments often claim peoples' lives before cancer has a chance to.  I never understood how society, especially the media, can characterize people like Farrah Fawcett and Ted Kennedy as having "lost."  They died of their cancer. But they did not lose. Far from it.

Since watching the documentary on Farrah Fawcett's cancer journey, Farrah's Story, I became downright irritated when people said that "she lost her battle with cancer." She fought long and hard, leaving behind a story that documented her cancer experiences so that others could learn from them. She lived her story outside the box, seeking alternative treatments that were not widely accepted in the U.S., fearlessly looking for a way to stay alive.

What about Leroy Sievers, the well-known news correspondent who, before his death from colon cancer last year, inspired tens of thousands of people with his NPR podcast and blog, sharing his personal story with the world on a daily basis?  If it weren't for Leroy and his willingness to undergo a radiofrequency ablation (RFA) procedure on camera for the Living With Cancer Discovery Channel documentary, I would never have learned that RFA could successfully kill all my lung tumors.  Leroy also won, in the end.  His impact can never be measured - the people he comforted, supported, and, like me, guided out of what he called Cancer World.

With Ted Kennedy's passing, I heard the phrase again. With all that this incredible leader accomplished, can anyone really say that he "lost his battle?" He died of brain cancer, a winner by everyone's standards. He lived his life fighting for health care reform that would make life better for all of us when (not if) we get sick. Although cancer ultimately took his life, Ted Kennedy - the voice for the voiceless - won countless battles.

What about all the other people who have died of cancer who were not in the spotlight? Did they "lose their battle?" Or did they die of cancer, having fought like hell to live?

Death is an undeniable part of life. Since we're all going to die someday, will we "lose our battles" against the diseases that will eventually take our bodies? Not me. With the exception of a few bad days, I never really believed that I would die of my cancer. I can't explain this; it's just a knowing that comes from deep within. But if, by chance, after all that I am doing to kill my cancer and prevent a new one from developing, I die from this disease, I do not want anyone saying that I "lost my battle." The winning is in the fighting - that's how the end of life should be remembered.



Sunday, August 23, 2009

Fear, Faith and Other F Words

I recently received the 2009 Flame of Courage Award from the Cancer Hope Network, a New Jersey non-profit organization that pairs cancer survivor volunteers with newly diagnosed patients to provide guidance, support, and resources. My friend, Lindsay Tasher, is on the Board of Trustees, and she graciously nominated me for the award. Some people said that they liked my speech, so I decided to include it here.
Acceptance Speech for Flame of Courage Award
Cancer Hope Network - June 15, 2009

Fear, Faith and Other F Words

Thank you very much for this award. Lindsay said that I have about two minutes, so I tried to focus my thoughts, and I've titled my comments tonight, "Fear, Faith and Other F Words."

All Survivors remember the moment that we are diagnosed - and, for those of us with metastatic disease, we sometimes have a second moment, when we are diagnosed again. In addition to fear, I was confused and felt very isolated because no one really knew my disease or what to do with me.

Over the last 10 years, I have experienced many, many sides of the cancer journey. They have given me a window into a disease that allows me to relate to just about any cancer survivor. I'm lucky that way. Fear is a powerful motivator. Fear pushed me up against a very hard wall. I might not have found a door if it wasn't for Faith.

My faith helped me pull together my own team of medical doctors and alternative practitioners. We work together to find the best way for me to build my immune system to overpower my cancer. I think we're doing a pretty good job.

Organizations like the Cancer Hope Network give survivors a place to start making connections and building their teams.

When I was diagnosed with metastatic disease in October 2006, I was hungry for information about others with rare cancers like mine. Jonathan Alter, also a cancer survivor with a rare metastatic disease, describes this in his cover article in the April 9th, 2007 issue of Newsweek, called “How I Live With Cancer.” He says, “Unfortunately, many hospitals still do little or nothing to connect newly diagnosed patients with those who have survived the same disease for several years, though this is what we crave.”

The Cancer Hope Network offers a solution to this problem. Volunteer survivors teaming up with newly diagnosed patients with similar medical histories gives patients an opportunity to express feelings, talk about fears and concerns, and ask questions of someone who can offer an “I’ve been there” understanding that few others can.

I’ve been asked how I cope with those moments when the reality of my diagnosis surfaces and my mind wanders over to the Dark Side. Having spent a little time on the Dark Side, I eventually realized something rather extraordinary: Death is not the worst thing that can happen. Not living a purposeful life, not leaving an impact, for me, would be far worse.

So my last F word tonight is Front, as in United Front. Cancer patients and our medical teams need to work together toward treatment goals that we actively participate in setting. We research, we learn, and we become knowledgeable, as we fight the helplessness that we feel from a disease that takes control from within. On a broader level, the fight against cancer is best fought with a team approach: Scientists, doctors, survivors and their families, working together to set goals, make connections, and think outside the box, all in the name of healing. I applaud all of you tonight for being part of this United Front.

I promise not to put this award on a shelf until it is time to pass it to next year's recipient. I promise not to take it for granted. I will do my best to live up to all that the Flame of Courage represents.

Thank you.