The Club

Have you ever joined a group that nobody wants to be in?  Usually it's involuntary, your joining, because you get assigned by some unwanted label, like "unemployed" or "single" or things like that.  That's what a cancer diagnosis does for you.  It makes you a card-carrying member of the club no one wants to join.  And what a strange club it is.

If the Cancer Club had a balloon parade like Macy's, breast cancer would be the enormous pink ribbon balloon, and every other kind of cancer would be represented by the people walking below it holding ropes, waving at the crowd in vain because no one really sees them, they are just holding onto the breast cancer strings.  It's hard not to feel that way about it when breast cancer awareness is such a powerful media machine, and everyone's talking about it and funding it and walking for it and running for it and companies are profiting off the lapel pins and the bumper stickers and the key chains and the rubber bracelets.  

I respect the walkers and the runners and the survivors.  They are real people with real cancer affecting their lives or their relatives and they need research and early detection and cures.  But I don't have a lot of patience for the people on the phone calling to ask me for money for breast cancer research.  I'm sorry, I tell them, but I can't give you money for breast cancer research.  I have my own cancer to fight, but no one's ever heard of it because it's not on the news and there's no fundraiser marathon and not really much research and this is usually about the time when the polite telemarketer hopes I'm feeling well and wishes me luck with my cancer fight and ends the call.  I feel kind of bad about ranting to these folks, because it's not their job to provide me with a telethon for my kind of cancer and cause copious research to manifest on my behalf, but I wish they could.

Sometimes I browse cancer blogs and articles, searching for someone with the same cancer as me, but I don't find anyone.  I want to find that camaraderie, like the sisterhood of the breast cancer warriors; I'm searching for the support group full of wheelchairs where the biggest accomplishment of the night is when someone is able to STAND UP for their "Hi, my name is _____ and I have spine cancer" introduction.  I find touching and inspiring stories, to be sure, but rarely anything that makes me feel less alone with this rare disease.  I don't even have the same lingo as my fellow club members.  I have not been assigned a Stage.  I don't have any real prognosis, not the slightest idea how long I can expect to live with this obscure tumor.  It could be decades.  It could be less than five years.  It might never metastasize, or it might spread.  It's anyone's guess. At what point do you get to call yourself a survivor, that term that everyone associates with "winning" the fight against cancer, if you're going to have your cancer for the rest of your life?  It's not going anywhere.  We're just watching it... indefinitely.

Don't get me wrong, I'm not ungrateful for the position that I'm in.  I understand that not knowing my prognosis is better than having a short one.  I don't envy the warriors suffering through chemo treatments.  I'm thankful not to be enduring that along with everything else.  I know that I'm not the only person with a rare illness that hasn't been researched enough, that there are others out there in the same boat as me wondering when they're finally gonna get a lifeline tossed their way.  And I usually focus on the positives, on the hope, on the things I can do instead of the things I can't.  But it would be dishonest not to show that there's this other side of things as well.  That sometimes I still pout, and like a rebellious teenager sent to her room I rage that this is unfair, and ask why me, and melodramatically lament that no one understands me. 

I'm allowed to have these moments, it says so on my membership card.