Day 88

I have spent the last few days trying to get used to this blinding white head of mine. I guess after 33 years protected from the sun by all that hair, my scalp is just not used to the elements. I still kind of hate how it looks, and I much prefer these pictures of me with my little GI-Jane look. This is more Jane Curtain-Conehead if you ask me. I have gone out in public bald, and I have received many more stares and some comments (a little boy perched on top of his porch railing, looking like he was going to plummet 10 feet, shouting "Why are you bald?!") and it's infinitely harder than having just that little bit of hair.

It's definitely starting to feel like this particular cure is worse than my particular disease. It astounds me that with all of the awareness of breast cancer, all of the attention paid to it, that I am receiving the same treatment as a woman with much more advanced cancer. Where is the walk to support research into what triple negative actually is? I love this quote from an online interview with a bunch of oncologists. The one is talking about triple negative and why that is a bad name. He says "That's like seeing a redhead and saying, there's a non-blonde, non-brunette who doesn't have a beard." That's what I'm saying. What disease do I really have?

Where's the pink ribbon campaign geared towards making a breast cancer chemo that doesn't make you lose your hair, your fertility, your sexual function, your mind, and your toenails? There are many chemos out there that are less toxic than what I am doing, even for cancers that are more advanced or in deadlier areas of the body. It doesn't make sense to me. This is literally called "cut, kill, burn," this treatment that I'm doing. It comes with huge risks, and the things that are most obvious, such as hair loss, are actually just physical reminders of what the medicine is doing--killing many of your healthy parts. And not everyone who goes through chemo goes through a chemo like this.

Barbara Ehrenreich has written this book I need to read called "Smile or Die." Interestingly, in the U.S. we've given it a less-toxic name. It's about how she believes that the doctrine of positive thinking that permeates our culture has had huge negative impacts, because it enables us to blame individuals for the things that happen to them rather than look for systemic causes. I haven't read it yet, but she starts her research from her experience with breast cancer, when she was constantly being told she should be grateful, to see cancer as a gift, to fight it! and join the sisterhood and everything else. And she asked, well, why isn't anyone else pissed off that they don't know why breast cancer rates are skyrocketing, especially among young women, why they haven't figured out better treatment options when breast cancer is so curable and survivable? Why are we swatting mosquitoes with a sledgehammer?

And that's a great metaphor. For someone like me, it's as if you thought you saw a mosquito on your hand, so you took a sledgehammer to your hand, breaking all your bones, only to find there was no mosquito in the first place. And your response is supposed to be, thank you, may I have another?

I have so many other questions about breast cancer treatment. Let's talk about everyone's favorite cancer poster child, Lance Armstrong. Now, while it drives me crazy to hear about this fight, and battle, and everything, and I cringe when I read his statement "cancer is the best thing that ever happened to me," I don't begrudge the guy his horrible situation. At 25, he found his testicular cancer had spread to his abdomen, lungs, and brain. He has never publicly said anything but negative things about chemo. But--here's what gets me. He had stage 4, metastatic cancer. He finished his treatment and went on to win all those damn bike races. If breast cancer becomes metastatic or is initially diagnosed as stage 4, women are often told that they will be on chemo for--get this--the rest of their lives.

What the hell is the difference? Lance had cancer in the BRAIN. He went on to date some rock stars and have babies and become world famous. Women with metastatic breast cancer, or even early stage breast cancer, are for some reason put into another bucket entirely. No amount of pink advertising will make that sit right with me.

Right now, I have no cancer in my body--none. Cancer caused me no pain or physical suffering. Surgery had its issues but those lasted merely days, with the exception of the scars and the potential for my left breast to be slightly disfigured, or smaller. So I became cancer free and started on a path to destroy a healthy body.

I'm going to continue with the treatment, since there is literally nothing else for me to do, being the redhead of the group, the triple negative one. But I absolutely dread the idea of my next a/c chemo on Wednesday and what it will do to me for the week after that, and the potential for what it could do to me forever. I try not to think about taxol, the chemo I will do in September and October which is supposed to be much "better" but often causes excruciating bone pain, neuropathy, and can make your fingernails fall out completely.

I mean, really? I can't imagine that in 30 years we won't look back and say, that was a bad idea. But right now I just try and hold on to these 6 or so "good" days that I have between chemos. I got my appetite back last Wednesday, and even ate some pizza on Friday, much to my astonishment. Besides the bone-dry nature of my whole body and this shiny white head, I feel almost normal. The torture is in having that feeling, only to voluntarily surrender it again in a matter of days.

I know that I write a lot about the bad aspects of chemo in this blog. There's actually a reason for it, and it's not that I'm just a big complainer. It is the hidden aspect of breast cancer that no one wants to talk about. I feel like as a culture, there is an aspect of cancer that we just cannot bear to discuss. We are more comfortable talking about death than talking about this other thing. And that thing is suffering. We are a society that is convinced that suffering is unspeakable and terrifying. And yet everyone suffers in their lives. But hell if you should ever admit it. I go searching on breast cancer blogs for people to talk about the realities of chemo and I get these one sentence ominous statements about the "unbearable pain" or "humiliation" of treatment, surrounded by paragraphs and pages about the great things learned from the cancer experience. Where are the details, the sharing of pain? When you're pregnant, there is nothing that is unspeakable, no experience, no matter how personal or even disgusting, that you can't talk about with other pregnant women. Women will talk about their labors, episiotimies, hemorrhoids, constipation, breast engorgement, lack of libido, you name it.

You have breast cancer? Don't talk about the bad stuff, you're supposed to be grateful to be alive. Well, yes, I'm glad I'm not dead. But that's the key, right? I'M NOT DEAD. I don't want to feel like I am half the time I'm trying to cure my disease. And there are some things that have happened to me through chemo that are too personal to even ever write about here. It's hard--it's isolating.

I have to say that it does seem like part of what the positive thinking-mantra does is get you to be complacent so you will take this shit without complaining. Don't ask questions. I feel like it infantilizes women. We talk so much about breast cancer, but if you have it, you get a pat on the head and are told, here's what you should do. If you ask why, you are told, well, because. I will always hold the pictures in my mind of the times when I did lose my shit in front of doctors or nurses, and screamed, or cried, or told them I wasn't going to leave until they answered my questions or told me what I wanted to know. The surprise was palpable. She's mad, she's upset, she's questioning us, she's stubborn and maybe a little crazy, they're thinking. This is not how it's supposed to go.

And yet, each time I did that, I got a little bit of what I wanted. Being happy, or positive, didn't get me that. Accepting my treatment course without question did not get me a reduced chemo dose that wasn't based on a made-up ideal weight for someone else. It didn't get me an earlier second surgery date, or a guarantee that I could do that surgery after the mammograms showed the "dermal calc" that almost led me to mastectomy.

Sometimes these seem like pointless victories, and sometimes they seem like the only ones, so on my better days I'm proud. And I love the doctors who are out there who just want to treat the disease, even if I think their ways are imperfect. I don't want them to treat my attitude or my psyche. I was fine with those the way they were before, thank you. One doc on a message board says that he tells his patients, you can be as pissed off or as happy as you need to be. It won't make a damn bit of difference to your tumor.

I lived with my tumors in harmony for many years, during which time I put my body through a lot, including pregnancy and nursing. Once the cancer was discovered, it was necessary for me to believe my death was imminent in order to do what I needed to do. If I questioned needing chemo as a stage 1 patient, I was told, we want to save your life. But I'm not dying, not today. I really think that no one would do chemo if they weren't convinced death was the only alternative. I believed that once, but now I'm not so sure. I've already gone down the path though, so I'll finish it. I just can't say that if this ever comes back that I would do it again.

Now that I've finished my chemo rant, I wanted to say something about the last blog. Gabe has said to me that sometimes he is jealous of this blog. He feels like he finds out things about me at the same time as everyone else, and he should know me better, because he's my husband. And I know that this blog actually has the potential to pull me farther apart from people, because it is so different than the public version of Katy. I am usually fairly lighthearted, even when I'm into my genocide interests or whatever. I like to talk about sports, and stupid movies, and celebrity antics and stuff like that. I talk about my kids and my job. I rarely get into deep discussions about my feelings and secret fears. I don't do personal things in public, like sing, make out, or cry. I understand if some people just don't know how to relate to me after they read some of this stuff, because it's so heavy.

And the last one was like that. Even now though, a few days later, I can see that experience of Gabe and I in the bathroom somewhat differently. I understand how people see it as beautiful, intimate, strong--that image of a husband shaving his wife's head. And yet that image must be so common. There are thousands of couples who have done that. It is, quite frankly, a moment of intimacy that both Gabe and I could have happily done without.

But there is something about it that sticks with me, thinking about it now. I interpreted Gabe's comment about his father, or lack thereof, as being probably deeper than it was. He wasn't talking about some life lesson he never learned. I think he was saying that he had never learned how to use men's clippers before; that should have been obvious since he was reading the instruction manual before he attempted a hack job on his own hair. I think he was saying, hey, I don't know what I'm doing, I've never used these before, because no one ever showed me how. Once the attempt to clip my buzz failed he actually have himself a very nice haircut.

I'm thinking about the days when Gabe doesn't use the electric razor on his face and goes for the Bic. It's often not a pretty sight. There are cuts, bloody kleenex on his face, razor burn that lasts for days. Three days ago he shaved my entire head--huge heaps of short thick hair--with a disposable razor and a 79 cent can of shaving cream. And I had not one nick, not one spot of blood. My razor burn was gone within an hour.

It doesn't impress me that he shaved my head, that we cried, that it was hard. The image I'm keeping is of me sitting still, watching the whole thing in the mirror. What I couldn't see, the part that really means something to me, is his perfectly steady hand. So when you ask how we're doing over here, we will give you some kind of answer, but that's what you should think of too. That's how we're doing it.