Saturday, October 8, 2011

The Tribe has Spoken

So every October as we all jump higher and higher to prove that we hate cancer, particularly breast, by buying products that are pink for the month, there's usually an article or two to discuss the term "survivor" as it is applied to cancer patients. We used to apply it to people who "beat" the disease, but lately I have seen it applied to those of us living with it as well.

I never understood why people objected to use of the word. I mean didn't people who fought the disease actually survive something. It's one of the few times that word actually applies (please, please tell me you've seen the episode of Curb your Enthusiasm when Colby keeps trying to compete with the Holocaust Survivor at dinner, it's hilarious) Also aren't we just trying to keep positive? Like when we say "cancer free", it's not technically true or at least there's no way to know if it's actually true, but it sounds awesome so we use it when someone's cancer can no longer be detected. I remember when my dad got his "cancer free" bill of health and I was so excited. And then my former friend (who shall remain nameless) said "he'll never be cancer free Jaime", not "that's great news" not "you must be so relieved". But she also decided to tell me how I caused my own miscarriages so why I expected comfort I'll never know. But that's why she's a former friend...

Anywho, if you are not familiar with this argument it is usually coming from people who have lost loved ones to the disease. Now it didn't bother me in the beginning because I gladly will call someone who beat the disease a survivor. And no one I know who has beaten it would ever think that they beat it because they were somehow superior to someone who did not. We patients don't even like to compare stages, let alone survival statistics.

Frankly, I used to think it was a petty argument, until you find yourself typing the words "lost their battle with ____ cancer" several times and then you realize it just doesn't sound right. They didn't lose, they fought like hell. Medicine lost, the doctors lost, the world lost, but not my friend. It does kind of imply that there is some responsibility on the part of the patient. It may not seem that way to some people (I never saw it that way before now), but after a while I can see how you start to feel resentful. It's like the stop smoking commercials in NYC. I love that NYC is using tough tactics to get people to stop smoking. I think tobacco companies are evil incarnate, they are the only product allowed in the US market that if used properly, will kill you.

But when you have lung cancer these commercials are like torture. First off it can feel like it's saying "well if you have lung cancer, don't come crying to me, you did it to yourself". Then there's the one that says "dying from smoking is never painless", um thanks. And now the new one, "the only thing worse than being diagnosed with lung cancer is having to tell your kids" with the young mother. That one makes me want to throw a shoe at my TV (I will not, because it's brand new, I should have thrown it at the old one, that might have made me feel better).

I just read an article (that I can't find to reproduce here) about a woman who is BRCA-1+, lost her mom and fought breast cancer herself. Her parents are also Holocaust survivors but her dad says "I was in concentration camp". She asked him why he chose those exact words and not "I was in a concentration camp" or "I am a holocaust survivor". And he responds, "because it was through no action of my own, it was just luck." He chooses his vocabulary to reflect that he is in no way alone in his suffering. The author uses the term "succumb to the disease" when she describes her mother's death. I think I like it better than "lost the battle". What does lose mean anyway? I know the people who are left behind have lost, they lost someone they loved. But what about us, the actual patient, what do we lose (yes I know you lose your life) but I mean what do we personally lose? Dignity? No. Strength? No. Courage? No.

Am I making any sense? I don't feel like I am. But I guess ultimately truth is it sucks no matter what vocabulary you use.

But I have to say one thing, even though it is a battle it hasn't felt much like one yet. In fact being a patient can feel rather passive, esp. when you are waiting rooms all the time. But after talking today with Laura, I think maybe making a shift to a battle mode is what is in order? We'll see. Of course I could really go for a nice nap too... ;)

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