Tuesday, November 30, 2010

Day 208: Tangled

I was debating which movie to refer to in my blog title today. I thought that Love and Other Drugs might be appropriate, except for the love part, and the part where I don't really want to relate to a movie about a young woman who knows she might soon die from Parkinson's and a guy who works for some evil pharm company. Tangled is good as well, and as of today, I've actually seen the movie. I did really like it, as did Lenny (though it's scary for a four year old in some parts), but I did have some issues.

My Disney princess issues go back a long time. I don't care if Lenny likes the princess stuff, because she doesn't actually know much about the stories. The stories themselves disturb me. (I like the songs though.) In college, a friend and I did a research paper on sexism in Disney movies. I'm not talking about girls being princesses, getting saved by Prince Charming, getting married, evil stepmothers, and all that boring stuff. I mean the violence and abuse: Ariel's legs getting ripped apart, Belle being imprisoned and starved by her "love," Sleeping Beauty and Snow White, you know--dying.

So this one was a big improvement over those, though the imprisonment was there and for some reason Rapunzel loves a criminal. But whatever. She doesn't seem interested in getting married, she kicks some butt, and she is a total Renaissance woman who can do everything, even if only BECAUSE she has been imprisoned. The issue I had this time was with the hair.

Long magical hair! Or is it? Long beautiful hair keeping her down! Or not? Blonde hair is beautiful, brown is ugly! Or the other way around? I didn't really get the message, except maybe, you shouldn't love someone for her hair. That's the message I wanted to make out of it though. Right before the movie Lenny and I went shopping and at least five different women stopped her--a 4 year old--to tell her how beautiful her hair was. I can't say I was jealous, because it wasn't jealousy, but it was recognition that I heard that for over 30 years and I don't hear it anymore, and I don't know if I ever will, since I think my hair is brown now. I like brown hair, don't get me wrong. I just have no concept of having it myself, or how that could be me. What is it like to shop without some kind of hair comment? Beautiful red hair! Sexy bald head! That's what I've been used to my entire life. Well, I'm finding out. Strange, ugly duckling hair--no comments there. Gabe thinks it's red. I think it doesn't matter, until I go back out into the world and realize that to everyone else, it does. We make movies about it, after all.

This is a long pontification on a simple movie, but it's better than the two other things I have to blog about. Hot flashes, for one. Apparently it's considered a serious problem if you have more than four hot flashes a day in menopause. Excuse me? I wouldn't even CARE if that was the case. How about six an hour at night? How about an hour of sleep every night for the last four? I have been so desperate I would have tried anything. I went back to the anti-depressant they gave me when I was on chemo which is supposed to reduce hot flashes by 60% or something if you use it for a month. Well, I can't use it for even a day. All night long, in addition to my hot flashes, my heart was racing and I was starving. I also felt nauseous, and I have all day today as well. I don't know if it's the drug or radiation. I sure as hell shouldn't have been hungry, because we ate a huge meal of leftovers from Thanksgiving, including pumpkin pie. But the hunger and heart racing just kept me awake, which is not the result I wanted.

So there's really nothing for me. All the doctors just tell me to wait, that my body will start to repair itself due to my age. It might take six months, a year. Are these people fucking kidding me? Very few women have such severe hot flashes, but it does happen. My mom has had them for 12 years. I've talked to other women who have them, including women who sincerely believe in alternative treatments. When they're this bad, nothing works but the hormones. NOTHING. And honestly, what do these women say about that?

I don't care if they kill me, I don't care if they give me cancer, it's better than dealing with hot flashes.

This might sound crazy, but that's because most people reading this have never had one hot flash. If you've had one, imagine having them every five or ten minutes. Imagine being fatigued from cancer treatment in addition to insomnia. Imagine how cold you get when you're bald after your whole body sweats and then is reminded that it's winter in Chicago. Imagine a one year old who doesn't know how to talk but can a strange version of "hot flash," since we had to find a way to tell the kids why I was turning bright red and looking like I would explode.

Love and other drugs my ass. I've done acupuncture, and I'm still doing it. I'm doing this damn icool anyway. I can't take the Effexor, I won't take neurontin (I had enough of the liver-killing anti-convulsants, thanks), I will never be allowed to take the hormones, and I am supposed to just wait.

If I was working right now, I don't know what I'd do. Yesterday I almost got in an accident on the way to radiation since I was so out of it. I put my gown on backwards. I stared at my pilates instructor as she told me how to position my legs as if she was crazy, though I'd done it several times before, because I could not register what she was telling me. She asked what was up. 45 minutes of sleep, I said. Girl, she said, they are putting you through the ringer.

I've done this before--I've had pregnancy insomnia, I've had newborns, I've had mono and chemo insomnia and everything. Those things ended, and that's what keeps you going through it. This might not end. It's depressing, and I still feel old, and frustrated, and when the flashes are terrible I wish I'd never done chemo and killed my perfectly good ovaries.

So there's the hot flash rant. I know I'm only six weeks out of chemo but I feel like I'm just doomed to the permanent menopause, as is has come on with such a vengeance. I don't care if you think it's sexist, but if men had these, there would be a solution that didn't risk your life. Or, everyone would be allowed to retire upon menopause. It's just the truth.

My other rant is a general triple negative one. Because of the menopause, I've been feeling angry about my dumb luck to be triple negative and have this aggressive disease that necessitated chemo. I'm stage one! No matter, kill the ovaries anyway, lose your hair, receive a poorer prognosis, be left out on your own to see if you live. And why?

Birth control pills.

I've always suspected it, and at least some real research supports my claim:


I was on the pill for 11 years, starting at 18 and stopping when we started trying to conceive Lenny when I was 29. The pill was great for me in some ways, as I had long periods that were heavy and irregular, and the pill changed all of that for me. Suddenly I had five day cycles every 28 days with no cramps, not to mention no pregnancy scares. For a teenager living 400 miles away from home that was a huge relief.

But on the other hand, I wasn't the best candidate for the pill. I always felt like I was one of the real AIDS generation, growing up with Ryan White and safe sex messages galore. AIDS was to me what cancer must be to others. So for probably half the time I was on the pill, I didn't use it for birth control purposes. It was backup, sure, but I always used condoms. A pregnancy isn't the end of the world after all, but any kind of STD just wasn't worth the price to me. And I didn't sleep with very many people, but I did have some boyfriends, and they knew I was on the pill, and never questioned the condom thing. Except one guy, who had been trying to get me to date him forever, and then he tried to get me to sleep with him forever, and then we were finally in bed and he started arguing with me about using a condom. I wasn't even mad--I just didn't get it. Was he crazy or something? There were better ways we could spend time. The argument lasted a few minutes. It was my apartment, so I just put my bathrobe on and went in the other room and turned on Law and Order reruns. That whole stupid experience was perhaps worth it to see the look on his face as he came out of the bedroom, naked and excited, saying baby, what's wrong? Well, it looks like you had better go fuck someone else, I said. And he walked his sorry butt back to the el.

Personal story, I know (not as deep as the poem blog though, right?) but that's what pisses me off about the pill and triple negative breast cancer, if that's the truth. Why didn't anyone tell me? Well, back in 1994 when I went on it, I'm sure no one knew, but I still think that this article is right--it won't ever be out there. Can you imagine what would happen to our society if women were told the pill could cause breast cancer, especially for young women? The pill was touted as such a gender-equalizing thing, but in reality I think what it did more than anything is let a lot of guys off the hook. I know that's not the case for many guys, including those from my personal experience, but it is true for lots of men, I'm afraid. Now, I'm married to the guy who thinks nothing of the vasectomy and couldn't care less if we use condoms as long as we're having sex, so there was no reason for me to ever go on the pill again after age 29. And now I can't, because of cancer, and he might not go for the vacectomy since I'd like him to wait in case I don't make it, or in case my menopause is permanent, since that would make the surgery irrelevant.

Any way you look at it, the pill connection is a bunch of shit, though I don't regret my choice to be on it. I didn't know. Even after I answered about a dozen questions about the pill on my health questionairre right after diagnosis (compared to one each on things like alcohol consumption, activity level and weight--the only three "lifestyle" factors that have been directly linked to breast cancer), when I asked my doctor if there was a connection, they looked me in the eye and said, we don't know but we don't think so. Same with clomid, which I took once in order to conceive Augie. It worked on the first try, so I doubt that was it--plus, I'm fairly certain I already had breast cancer at that point.

Is the goddamn birth control pill going to kill me? Even if not, can I be a cheerleader for the condom industry? I remember back in the day when I was a young teenager who wasn't having sex and I would buy condoms for my friends if they were too embarrassed. If that girl grew up to have cancer because of the pill, bitter irony never had a better name.

I've never liked the idea that was need to inject, or swallow hormones in order to prevent pregnancy. When I first went on the pill I had this big long discussion with my boyfriend at the time. I have to do this every day, and it will change my body, and I can't forget to take it, and what will you do? Well, I would pay for it and pick it up from the store for you. I said, of course you will! Now I was a pretty willful 18 year old, and it never occurred to me that he wouldn't do something, since it takes two to tango, right? It never occurred to him either, and for years that's what he did, but I still felt this odd sense of the balance being out of whack at the beginning. I grew to appreciate the pill, as I said, but it took time.

Boy if I had known, the balance would have seemed plain stupid. People complain about condoms and I think, what are they talking about? It doesn't feel as good, but it still feels good--it's still sex! And please don't talk to me about spontaneity if you have children. It takes away the element of surprise! And what element is that, exactly?

How about this? Condoms are the only birth control that prevent STDS and potentially CANCER.

Now of course maybe there's no connection, maybe this isn't true at all, maybe I have cancer because of hormones in my milk or meat, because I live on the south side of Chicago around a bunch of old paint factories, or maybe I just wasn't meant to live a long life. Maybe it's someone's plan for me to always live with this tangible knowledge of my body, what it feels like to breathe or walk, or what it can mean to have something wrong--a hard line that doesn't feel right in the breast, a back pain that could be something else, trouble seeing that's really seizures, arthritis that reminds me of my hip fractures, cold air reminding me I used to have hair. I can't understand it, why the whole damn thing had to happen, but the potential connection with something as unnecessary as the pill makes me kind of angry, you know? Kind of on edge, kind of unbelieving at the pettiness of it all, kind of, well, tangled.


  1. You are meant to live a long and wonderful life and to tell this story. And to keep telling it -- so incredibly well - until things change.

    Night and I hope you sleep,

  2. You know, my mom wonders the same thing about the diet pills she was on in the 70's. I say, be mad, you have a right to be. And please keep telling everyone about it. Tell it all. It's not fair. You do NOT deserve any of this. You deserve pretty shoes and games of tag with your kids. But if you're looking for purpose, maybe that's exactly why this is happening to you. Because you don’t stand for a bit of it and you’ve been bringing so many injustices to light.

    When (just humor me for now with “when” and not “if”) you’ve recovered from all of this, maybe you'll have enough fight in you to keep talking about it. Please do talk, and publish… like your mom said. Maybe that’s the Why.