Saturday, September 17, 2011

Day 499: Fight Like a Girl

Wow; writing that blog title was strange. Today is the 500th day of knowing I had cancer; I started writing this blog the day after my diagnosis. I guess the one thing that can be said about cancer is that it's often a slow-moving beast, even when you have a fast-growing, aggressive type like mine. Cancer was growing in me for an estimated three to five years, and there I was, nurturing other human beings in and from my body, using my body to the best of my ability, living life. Other diseases can do you in a lot quicker, I suppose. I'm thinking about this because we went to see Contagion last night, a movie I swore I wouldn't go see, because of the mass death of children, focus on disease and treatment, and the fact that if I'm going to pay $60 for a movie since I need to pay the babysitter it had better be the best damn movie of my life.

But we ended up there anyway last night, since it was too cold to go to see a high school football game, our dorky date of choice for a Friday night. Can I just give a shout out to high school football games? When you're actually in high school, maybe it doesn't seem so great (actually, it did, when I was there), but this is one of those things that is just stopped in time and is still fundamentally awesome, even if you don't know a soul on the field. It's still $3 for a hotdog dinner, it's still beautiful in the fall and you don't even have to talk to your date because you're watching the game, and there's a band and halftime entertainment and just the people watching alone, especially all of the insufferable posturing of teenage boys, is worth the price of admission. We went last weekend and we could've walked the few miles to the game, but we were testing out our new 13 year old next door neighbor babysitter so we didn't leave early enough. We had a blast. As another aside, here's a shout out to the neighbor kids too. I'm in the office looking down into my yard and there's the 11 year old neighbor who is the quarterback on his little football team yelling things like "go straight down the middle Augie!" and patiently watching as my two year old son and five year old daughter run around like fools having the time of their lives. And it was his idea no less! I love it.

So the 11 year old's 13 year old sister watched the kids and we got a quick beer and then went to see a show. I was so prepared to hate it and be supremely disturbed. Granted, it's rough at the beginning, but it's so clinical and everything happens so fast that you don't even have a chance to feel sad about any of the individuals. There's actually one scene that's funny. But damn, they title the scenes just like this blog, in number of days, and by Day 100 or so, millions of people are dead. And though it's not at all related, since obviously cancer isn't contagious, I have to give the movie credit for making me think about things a little differently.

I remember very clearly when I reached 100 days. I was so deep into chemo, and it was a week or so before my 35th birthday. I don't mean this as any kind of slight to people who have cancer and don't do chemo for whatever reason, but sometimes I feel like if I hadn't had to do chemo, cancer would've been just a blip in my life. My way of thinking about cancer is directly linked to my experience with chemo. Yes, the fear was there, the grief and disbelief, that was all there pre-chemo. The surgery was shocking for so many reasons, especially since I had to do it again. Not knowing my BRCA status, my stage, yes it was all a nightmare. Radiation was no walk in the park. But I knew the moment I was diagnosed that I would need to do extensive chemo, and damn. Chemo--it did things to me I didn't know were possible to have happen to a living person. I know that sounds dramatic, but for this woman whose body rejects most drugs, it's the truth.

And yet. How much better it must have been for me than for people who tried the first chemotherapies as human experiments 30, 40 years ago. This was back when no one knew if chemo could be effective, when the doses were extreme and the protocol was to do it for an entire year regardless of your stage or type of cancer. I kept thinking about this as I was watching this film full of great actors, some of them pretending to be doctors or scientists searching for a vaccine for this disease that killed people almost before they even knew they were sick. This thing moved so fast, you hardly had a prayer. I loved the juxtaposition of the conspiracy theorists in the movie, who are convinced that the government is in bed with the pharmaceutical companies; some believe the disease is made up, others believe the purported cures are fake. And everyone here knows how I railed against chemo, how close I was to quitting, and how I questioned whether or not I was trading an early stage cancer for some kind of unknown lethal side effects, other cancers or heart disease down the line, etc. I was definitely a chemo-hater. I still am. I'm still glad I didn't take the side effect drugs, that I did acupuncture instead.

But I'm also glad I did chemo. Now that I know what I know, I can see that I came back to myself after all of that. I feel just as young, fit and healthy as I ever did. What does this mean? My chemo nurse told me at one point that the chemo was affecting me so severely that I at least should take heart and know it was working. Now I look at it like this: My body took that. What a punishment, what a beating. And now here I am, almost like it never happened. Score! When one character in the movie last night was talking about how no one knows what the side effects will be of the vaccine, I thought, no one gives a shit. You would take it anyway given the carnage. You would rail against the vaccine, and against chemo, and you would do it anyway, because you would have some evidence that it worked for some people before you. How brave those people must have been in the face of all those unknowns! How glad I am for them, so that I could have this one chance to fight this triple negative beast.

Ah, triple negative. The status of my cancer that makes me wish the internet didn't exist. I found some blog today, written by an MD who specializes in breast cancer, which stated that the test that they do to determine hormone receptive status for breast cancer is wrong 10-20% of the time. It is only wrong in one direction, apparently: some significant minority of women who are deemed to have estrogen negative cancer are actually estrogen positive, and yet they are denied the drugs like tamoxifen that could save their lives because they are never re-tested.

Boy, did I not need to read that. On the one hand, I am so grateful I don't have to take any more drugs, so glad that I don't have to have artificially-induced menopause anymore. But it makes you think. What if that is the reason that recurrence is so much higher for triple negative women, that the mortality rate is higher? Is it because they're not triple negative at all, they were just denied the right treatment?

It could make me angry, it could make me paranoid, it could at least make me ask for another test. And yet, I mostly just think, well, in reality, they are doing their best. Don't get me wrong. There is a lot of B.S. in the medical industry in this country, a lot of politics and way too much money wrapped up in it. There is a lot of sexism, a lot of infantilizing of grown women, there's a lot of shit, that's for sure. But most of the time, I think individual doctors and nurses are doing their best, knowing that they know nothing, even when they act like know-it-alls.

Contagion brought me to this thoughtful place, but I have to admit that the reason I get to be contemplative about chemo is that I'm not in the middle of it anymore. Back at day 100 I just thought oh please God, not again. Don't do that to me again. I couldn't get reflective about it when it was knocking me on my ass. But who was I talking to? I was the one who handed my damn arm over every two weeks. I was the one who kept going back.

I don't know what precipitated the desire to write this blog, but for the need to acknowledge that I actually think science is cool, and that it has aided my life in some very real ways. I also think it's important that science is no science--there's a lot of guesswork, a lot of mistakes, and maybe those of us who need to rely on it at some point in our lives just need to accept that.

When I dabbled with being an animal rights activist in high school (that didn't last long--I'm way too people-focused, and everyone knows I'm no pet person), I just couldn't get behind the whole no-testing-medicine on animals debate. I was taking Depakote twice a day, after all, the drug that poisoned my liver and that simultaneously allowed me to live a normal, seizure-free, life. Even after all the testing that had been done before me, that drug was toxic as hell (I don't understand why drugs like Depakote are prescribed so widely today, for all kinds of conditions, when they have such potentially devastating consequences). Of course it couldn't have been tested on humans first. It's hard to admit that, but it's true. Animals died, people suffered in the early stages of prescription, but, for me, it was worth it. It worked for me, amazingly, and I blended into the world fairly effortlessly. Wouldn't you want that for yourself, for your children? You could say otherwise, until you're confronted with some other reality, and then you're willing to try anything.

Well, almost anything. I wasn't willing to enter a clinical trial and try Avastin, which had no expected benefit for someone with my type and stage of cancer, but had unbelievably disturbing potential side effects. (In a controversial decision, the $100k a year drug was taken off the FDA's approved list for breast cancer treatment very soon after I started chemo). But no one would argue that chemo isn't toxic, especially adriamicin and cytoxan. Taxol's not much better. If something can destroy the nerves in your body, obliterate your ovaries and rot your fingernails right out of their beds, it's no joke. But if it can kill your cancer too? Well, it's debatable for some, but as I sit here feeling entirely like a healthy and happy 36 year old woman, it sure seems worth it.

I never thought I would say that. While I was in it, it was so horrible. Life is like that though--as they say, this too shall pass. The hope is that you will be there to look back on it, that the experience will pass on, not you. So far that's happened to me. I never thought I would say that I hope I am truly triple negative either, but I do hope the test was right. If it was, I can say that I did everything I could do (except for the fact that I've been eating too much good food recently, and I swore I would avoid fatty things, but now that I can eat without vomiting or having hot flashes I am just loving it. 118 pounds here I come!). If somehow the test was wrong, well shit, it's not good for me to be getting these periods now is it? But at some point you have to stop second-guessing and just accept it. We're all doing our best with the information available to us at the time. You can't get lost in the possibilities.

Way back at the beginning of my cancer diagnosis, I got a call from the mother of my best friend from high school (my friend sent me this shirt that I'm wearing in the pics, and another Fuck cancer one, which isn't my style, but now that I'm out of treatment I think this one is cute). She had had breast cancer herself. We talked for a bit and she said one of the most human things anyone said to me at that time: "I know you'll do your best, Katy." Not, I know you'll beat this, I know you're a fighter, I know you'll live, I know you'll kick cancer's ass. Just, I know you'll do your best. That's the only thing you can do, and I do think I have done it. Maybe they'll know better by the time Lenny's grown. Maybe fewer women will get breast cancer at that point. Maybe I'll even be around to find out for myself! And if not? I did my best.

Maybe that's what it means to fight like a girl. Don't expect to win, don't get cocky about it, don't shove your victories in anyone's face, don't think you got there on your own, and don't thump your scarred-up chest too early. Fight like a girl, and see what you can learn from the game. Just do your best.

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