Wednesday, May 17, 2006

LiveSTRONG Day

Today, Wednesday May 17, was designated LiveSTRONG Day by the Lance Armstrong Foundation. As part of that effort, a representative of the foundation wrote and asked if I would blog today "about (my) experience with cancer or on a specific issue (I) feel most passionately about.... What would have made Mom's cancer experience a better one?" I'm happy to participate but fear I won't be very inspirational. However, I'll be honest.

I once thought the phrase "They're inventing new and better treatments every day" was an empty platitude employed to inject false hope into a hopeless situation. I don't believe that anymore. Ten years ago, my mother wouldn't have gotten the brief remission and approximately two extra years of life she worked so hard to win. Today, medical science has treatment options that weren't available to my mother even a couple of years ago. Cancer treatment is improving incrementally, with revolutionary therapies--gene therapies, nanotechnologies, custom chemotherapy that targets only cancer cells, other stuff I don't understand--on the realistic horizon.

At the same time, cancer patients are more than meat and bones to be repaired and sent on their way. What would have made Mom's cancer experience better? Continuity of care: one physician who understood the entire picture, pointed Mom to the right resources, smoothed the path for her. As it was, Mom faced too many specialists concerned only with their little piece of brain or foot, and no one who seemed aware that cancer can affect the whole body no matter what particular organ it attacks. When Mom had one physician championing her cause, she got good care; when she didn't, she didn't. Family can fill some of that role but not all. I think it's important to build a history with a pro who knows who you are, not just what's wrong with your parts. If you're not satisified with the care you're getting, complain or shop around until you do. No one else will care more about your welfare than you do.

I get e-mails from people going through terrible ordeals, cancer and otherwise. I'm always quick to say I'm not a healthcare professional and can't give medical advice, but most already seem to know that. They're just looking for someone who understands... who's maybe been down the path they're standing at the trailhead of and can draw them a rough map of the hard climbs and switchbacks ahead. That's the main reason I wrote Mom's Cancer, and I think that's part of what the Lance Armstrong Foundation and similar organization are about.

I tell people who write me that Hope is never in vain. It has to be tempered with realism--I never advocate false hope--but I sincerely believe that it's reasonable to be optimistic. Reasonable to anticipate a better treatment or alternative therapy or acceptable quality of life. Sometimes the best you can hope for is a graceful, painless end--which after all is the best any of us mortals can hope for--and medical science can help that happen, too.

I'm no spokesman for any particular organization or cause. But in general, I think the road to surviving cancer has two parallel lanes: scientific progress and advocacy for those afflicted. Any person or group engaged in either or both is doing right.

2 comments:

Eva Whitley said...

It's not just cancer where you don't get continuity of care. When my husband was in his coma, there were several specialists who told me how little pieces of him were doing--his heart stayed strong the whole time--but they couldn't tell me why he was in a coma, if he would ever recover, and how long it would take. Possibly I might have gotten those answers if I had quit my job and moved into the hospital, but then we wouldn't have had health insurance.

BrianFies said...

Absolutely right, Eva. It seems like anything complex that affects more than one body part at a time really befuddles them. It's frustrating as hell. I'm sorry you had to go through it with Jack.