Day 195: Halfway to "Done"

Today marked my 17th day of radiation, so I am officially more than halfway done with this last part of my treatment. I just started to notice a little bit of pink on my skin; next week they might up me to the prescription cream. But apparently many people already have a skin reaction at this point, so I am holding up very well. The technician today told me that being thin helps guard against skin reactions from radiation. I have no idea why this would be true, but it would be the only time in cancer treatment so far that being thin was a positive rather than a negative for me, so I'm willing to take her word for it.

As I think about nearing the end of cancer treatment, I wonder what that really means. I will definitely be very emotional, happy, and in a celebratory mood come December 10 when I can mark the end of what will be over 7 months of continuous treatment, from surgery to chemo to radiation, with very little break in between. And yet, I won't actually be "done" at all. I will go to see my surgeon and my oncologist on January 4, and at the end of February I will have my first of many post-treatment mammograms. For the next two and a half years, I will have a high risk of recurrence/metastisis. For two years after that, they will continue to monitor me very closely. For the next several years, I will go to my specialists every three months, hold my breath, lose sleep, and generally go crazy wondering if this aggressive cancer will come back. I've heard stories of women who just finished chemo and found out that their cancer was back. Others have recurrences 10 years later, though that's rare with triple negatives. Our big hurdle is getting through the first three, during which time every backache seems like bone cancer, every headache is a brain tumor. And those are more positive than cancer spreading to your liver, which basically just kills you right there.

I feel like I'm doing pretty well with acting like a normal person, considering that this is the future I'm looking towards. I hope it gets easier, rather than harder, when treatment ends, but I wonder. So many people talk about how impressive it is to have gotten through chemo. But I ask you, how many people have you heard that die from chemo? I'm sure 99.5% of people live through it. It's horrible, but it usually doesn't kill you, at least not right away. The heart problems, the unknown effects of the poison, those probably take years to show up. Living through chemo means nothing for your overall ability to survive cancer. I'm hoping against hope that it will help me because chemo is the only thing I could have done to fight triple negative breast cancer, but if it were to come back or spread, what a piece of shit that will be for putting me through all of this for the last five months.

All of this! This damn menopause, for instance. When I tell people I'm in menopause or having hot flashes, they assume that I mean that chemo causes hot flashes. No, that's not true. Some drugs cause hot flashes. This chemo regimen kills your ovaries. Hot flashes are just a potential side effect of that death. There are lots of others, including changes in your sex life, your moods, your bones. But none of those should overshadow the killing of a healthy body part.

Same with this hair. Boy do I hate it right now. I much preferred being bald, especially when I had eyebrows. Now I think I just look like a pathetic old man or something. When will I ever look normal again? I miss being a normal-looking, even dare I say, a pretty woman. I'm sick of this, but I just can't wear the wigs. I barely remember how, and even though I hate this current look, I at least feel more like myself. We put so much focus on how being bald looks that I think we often forget what's really going on--again, that chemo killed my hair, down to the follicle, because it's such heavy poison.

I feel that there is a lot of forgetting when it comes to breast cancer, or at least that there's a lot of misrepresentation. With all of the focus on hope and positivity, it's easy to think that this is some kind of easy disease. We talk about mammograms as if they are preventative, rather than detection screens. The death rate hasn't changed for breast cancer for 10 years. The chemo regimen hasn't changed much in 20. We don't know what triple negative breast cancer is or what causes it, though I have my own theories, ranging from testosterone levels to hormone changes brought on by pregnancy and nursing to environmental factors such as diesel fumes. And yet all of the hype around breast cancer leads people to believe that all this progress is being made, that you will be just fine, as long as you're positive enough in your attitude.

Tell that to the women who die from this disease no matter what they do. Tell that to me, when I'm at the beginning of this "journey," when I've suffered, been disfigured, made my kids worry and my husband cry. Tell that to the family of anyone who goes through this. I don't want to focus on hope, which doesn't really mean anything, or on exciting new poisonous treatments. I want some progress to be made on prevention. How many people's lives will be cut short in their thirties or forties while everyone else was wearing pink? How many breast cancer survivors' daughters will have to start having mammograms at age 24, like Lenny will, if we don't find something better? How many people will lose their sense of self while the world at large tells us we're heroes?

I think that the real issue here is larger than breast cancer--much larger. It's all wrapped up in the idea that we have in the U.S. that we are a meritocracy. If you are successful, it's because you deserve it, and if you are poor, or uneducated, or sick, it's your fault. When people first learn I have breast cancer, they inevitably ask one of two things: Is that in your family? Do you have any risk factors? "Risk factors" is code for, what did you do? And if it's in your family, then you're just naturally doomed and that doesn't affect anyone else. No one seems to think that shit just happens and it's not fair. We don't consider that our society has a lot of artificial environmental stuff in it that none of us can directly control. Finally, we just can't wrap our minds around the idea that positive people die from cancer, and shitty cranky people live. Old people can live for years after a diagnosis, folks in their twenties only months. Whatever we do or don't do is not the point and is not what causes cancer.

Ir's hard to believe that, though, if we're addicted to the idea that we can control our own fates and that we deserve what we get. I think often about an old colleague of mine, a man who worked for social justice causes all his life. I kind of had a crush on this guy in the way you admire someone 20 years older than you. He was handsome, and bright, and extremely friendly and committed to the causes he had chosen. He was very serious, in excellent physical condition, very healthy, and never even swore. You could try to talk to him about sports and he would turn the conversation to civil rights and it didn't even seem annoying.

And one day he found out he had a brain tumor and he was soon gone, just like that.

The way you live your life doesn't always affect what happens to you, and that sucks. I guess it can help; I've come through cancer treatment fairly well so far in part because I'm in good shape and I'm very active and take care of myself. But it still knocked me on my ass and might affect me permanently with menopause, potential lymphedema, heart conditions. No amount of taking care of myself could prevent those things. I don't think I deserved it.

Don't think I'm feeling sorry for myself, now. I'm just reiterating my old theme: Let's stop talking about what a privilege it is to go through this, how strong people are, how brave. That's some U.S. talk right there. In other places I bet they say "cancer! wow, that's terrible, sorry." And even here, it's a gendered response. Do we ever tell a man with testicular cancer, hey I know you only have it in the one but let's take both of them just because, and if you don't like it, you're being vain? Do we tell men who become impotent from chemo, well, I'm sure you didn't have much time for sex anyway? At one point I was complaining about menopause to my gyne, and he started to say, well I'm sure your husband underst...and I interrupted him. What part of menopause is about my husband? I'm talking about ME.

No one wants to go through cancer, and once you are in a place where you have to, no one wants to think it will kill them. I can say that I worry about death without really believing that could happen to me. My daily life seems so far removed from that possibility. It involves things like my 4 1/2 year old daughter making a book at school--bound with cardstock and all. She wrote and illustrated the whole thing and there's even a page that says "I dedikait this book to my mom and dad." When she talks to her brother she says things like "I wasn't suggesting that you do that, Augie." Instead of me reading her one of the books I got her about kids with moms with cancer, she reads it to me. When we get to the part about feelings (this is a book for much older kids, but oh well), I asked her how she feels about my cancer. "Happy, because you're almost done." My life with her is often a marvel, because I wonder where the hell she came from and how she got like that.

Same with my son, but for different reasons. I think he has been reincarnated from a circus performer mixed with a rabid monkey or something. He has learned to climb onto the table in the dining room, he scales himself up to his high chair, will only eat if you give him a fork and let him feed himself, and will almost never let you hold him because he is physically incapable of sitting still. He's no dummy by any stretch and he knows everything that's going on, but he rarely has the attention span to sit quietly with a book. This picture is some of the only evidence we have of anything like that. Five minutes later he learned how to stand on the desk.

So my life is filled with that sort of thing. If I don't look in the mirror and if I'm not having a hot flash, I could almost forget about having cancer. Well, not really, but I sure as hell don't feel like I'm dying. So hopefully I'm not, but I know that other people felt the same as I do, and didn't last a year. Just like I know that other people were sure they would walk again after losing the ability, and then they never did. Just like lots of kids were convinced their anti-convulsants would work, and they got brain damage from all the seizures anyway. Did I deserve those positive outcomes from those bad situations? I sure as hell did. But so did a lot of other people for whom life turned out differently.

This is all just a long way of saying I'm almost done but even so I won't really be done. I've been feeling very introspective recently, so sorry if this blog is too deep. Maybe it's a good distraction from this God-awful chicken little hair. How can something that feels so soft look so ridiculous? Is there a normal looking lady in there somewhere? If not, my appearance has finally matched my personality...not much normal going on there, I suppose.