Tuesday, October 26, 2010

Day 173: Radiation #1

I feel like I have put myself on the cancer treatment fast track. I just had my last chemo 8 days ago, and we are already pretending like that was all in the past. Of course, until I am at least 3 weeks out of chemo, I won't know if I will feel any more like my old self, since I've always had 14 or at the most 19 days between treatments. In a few weeks I'd like to take stock and see where I have ended up. I might know a little by then about how chemo has affected me in the short term.

In the meantime, I decided to just try and get radiation over with as soon as I can. Yesterday I got my tattoos--three of them. I can't actually see them, since they were placed under the sharpie and tape. They put red ink on me and inserted the needle, which felt just like a blood-draw stick for two of them. The third one hurt for about ten minutes, which surprised everyone. But the longest part was getting put into position--more on that in a minute.

I told them that I would like to start the next day, so this week I go in every day at 8:30, and I'll start at 8 next week. Once you start radiation, there's no turning back. Unless you have a truly horrible skin reaction towards the end, there's no stopping. I go every day, Monday-Friday, for 33 treatments. They give the staff Thanksgiving and the day after off, so I will go in the Sunday before Thanksgiving to make up a day. This means I should finish radiation on December 10, in time to recover for a few weeks before Christmas. Maybe by then I will be able to tell if I have serious radiation fatigue or if I'm still just exhausted from having all of these horrible hot flashes and not falling asleep until the morning (I fell asleep at 5 am last night). Maybe we will even go up north for a few days before the holidays; right now, we can't go anywhere. There are lots of maybes these days.

Regardless, I went out this morning in our crazy Chicago weather (torrential rain, incredible wind), got to the hospital and went right to the women's changing area, put on my two gowns, and started to read the paper in the waiting room. I was annoyed that they didn't come to get me until 8:40. I am trying to time this so that I can help get the kids to daycare, but also so that I can keep them home on some days. To do that, Gabe will have to stay with them until I get back, and then he won't get into work until closer to 10 due to the train schedule. So I was thinking, come on people, this is the easy stuff, I'm told. I should be in an out of here in a few minutes, right?

Well, not really. I left my house at 8:10 to go to the hospital, which is very close by, and I got home at 9:15. So this will take some time. It's a good thing that I'm not working right now. I remember when my grandma did this, she said that she looked at it like it was her job. And it is--half of it is just showing up, commuting, being on time. Even though radiation will be much easier than chemo, I think it would be more annoying to work through it--it's like a second daily grind.

And the waiting really is the hardest part. Once they were ready for me, I laid down on the same metal table they used to do the CT scan and to give me the tattoos. Then the process of prepping me began. It reminds me so much of that CT scan I did when I was 6 and I was told I couldn't move for what seemed like an eternity. There was a sheet underneath me, and they literally moved my body around by centimeters and inches by lifting the sheet. These two women put their hands under my hips and rolled me, pushed my torso to one side or another, just manipulated me until they got it right.

There are so many rules! My legs must be relaxed and not crossed. Every time I will be asked to put the fingers of my right hand in the belt loops of my pants (so, I guess I have to wear jeans, or pants or skirts with belt loops, every day). My left arm is lifted over my head and placed very exactly on a metal shelf. My head must go just like this, my butt like this, and DON'T MOVE. It's actually really hard to do. My nose started to itch right away (they say that happens to everyone), I got something in my eye, the metal table felt cold. It doesn't matter; just lie perfectly still. You can sneeze or cough, but you just have to let it go.

So there I was, immobile, waiting, staring up at this bizarre nature scene they put in the ceiling around the lasers. Then a few x-rays were taken and the treatment began. I could hear a loud buzzing, and I could see a green light, but I couldn't feel anything. I could see the green lines and red marks from the machine outlining where on my body the radiation was supposedly going, and there's something about the whole thing that is reminiscent of what they show on tv when they're portraying an alien abduction. But the strangest part is that it really is all a leap of faith. For now, they could be radiating my feet for all I know. The technician told me I would know they were getting the right spots in a few weeks, or maybe sooner, when I start to get that nice tan on my breast and chest. Until then, I need to use aquaphor on my chest twice a day to help my skin, which looks totally normal for the time being, and just take their word for it.

As an aside, I've made the mistake of looking online at pictures of radiated breasts, and it's really pretty disgusting. There's so much breast cancer hype out there, especially this month, and it's all about ribbons and teddy bears and hope. The reality is much, much uglier--truly. I know that I don't have any idea how my skin will react, and it might not be that bad, but it's hard to be optimistic after my experience with chemo.

Any way I look at it, I'm doing it, and like I said, there's no going back. I kept meaning to have a photographer or someone take pictures of my breasts before I went through radiation, but there hasn't been much time. I thought I would do it after chemo, but then I was all marked up the day after chemo ended. Gabe did take some pictures yesterday, so if my left breast just looks atrocious I can remember what it was like to have normal-ish breasts, even with the scars and the marks. I've been sad about this for the last few days. I still do like my boobs. You can call me vain, or tell me it's irrelevant, but I just don't like the idea of the disfigurement at this age or stage of my life. Maybe it would never be easy, but it really isn't now. Of course, in all these pictures, I'm still pretty much bald, so that's a disfigurement in a way as well, and I've gotten surprisingly used to that.

Perhaps someday, when the skin goes back to normal (the doctor says it will eventually be the color of the skin on my face, and while that breast will be firmer and the skin tauter, it will be hard to tell), I will take some more pictures. I wish I had been less shy when I was younger--I should have taken a thousand pictures of my boobs! They were awesome! Now it's hard for me not to see them as some harbingers of suffering, even though they look pretty good in the shots we took, all things considered (and no, I won't be sharing). Gabe said, see, you've had two kids AND nursed AND had breast cancer and they still look good. I'm glad at least he thinks so!

I don't know why the potential effects of radiation on my breast bothers me more than the scars from the surgeries. Those don't bother me at all. I've never minded scars, as they are just reminders that something happened that you are supposed to remember. I actually kind of like them, and I'm lucky enough to be married to someone who likes scars and stretch marks as well. He's weird enough to think they're sexy. It's also good to be married to someone who is so hell-bent on the idea that I am the only person in the world he wants now or ever, even if I don't believe that's true, or that it needs to be true to be real love. It's not like it's a contest, and only those people pledging eternal loyalty can win.

I'm saying these things here in a way to acknowledge that I have never really put into words how hard breast cancer has been on my marriage. You think having two small kids is tough, juggling work, dealing with this economy? I used to think so, but I was pretty much wrong. We already had issues, like everyone does, but this has been some real bullshit that has affected just about every aspect of marriage, including ones I didn't know existed. I've heard that while the divorce rate is 50% for the general population, it is more like 67% for people where one partner has cancer. In fact, 80% of couples divorce if the woman has cancer, compared to 20% if the man does. This is due to the fact that men have a tough time dealing, and to the fact that women feel too guilty to leave a sick spouse. I don't remember where I was reading this but it disturbed me at the time. So while I feel like we have had some big struggles, at the end of the day, we've done pretty good, all things considered. We still have romance and fun and passion and all that stuff.

But we also have some strange conversations. The other day I was talking with some girlfriends about birth control, a common topic for those with busy little kids. Now I can't take anything with hormones, and I think about 20 doctors would kill me if I got pregnant. It's easy enough to just use barrier birth control. In the long term though, it makes the most sense to have a more permanent solution. I'm not going through a six week recovery and another major surgery to get my tubes tied, so that leaves a vasectomy. We always planned on doing that anyway. This seems like a no-brainer to me. I think every man in my extended family had one back in the day. My parents chose to cap their family at age 25 or 26. And Gabe doesn't have a problem with it, so I told my friends that we would do that once I'm through with cancer treatment.

But then I started thinking about it. The next day I told Gabe about the conversation and I said, you know what? I think you should wait. I don't think you should do it. Recently, he has seemed sad about not being able to have more kids. Augie runs us ragged, and especially runs him ragged these days, but he's been talking about how cute he is and getting wistful about babies. So I took a deep breath and said, look. What if I die? You should be able to have kids with someone else.

And that's the closest I think I've ever come to getting hit by my husband. Not really, but boy, was he mad at me. I think he would get the operation just to prove he was serious when he said he wouldn't want to have kids with anyone else ever and that I was going to bury him first and all that. Even if it's not true. It just made me realize that while couples all talk about these things, for a while at least, our conversations will be just a little different. It also made me realize that one of the biggest burdens of cancer is that elephant in the room. Just like my bald head is the physical manifestation of the elephant in the room that is my cancer, pretending that death doesn't exist is the emotional equivalent.

As cancer patients or survivors we are not supposed to talk about the Big D. It's too hard on everyone else and it sure as hell doesn't qualify as "positive thinking." But if I can't mention these feelings to my husband of all people, what the hell else am I supposed to do with the fact that I think about things like this every single day? Some people think, what if I regret not being able to have another child if my husband has a vasectomy? I think, how would I deal with the guilt of knowing that I left two kids motherless as well as one man alone and unable to have more kids if he has a vasectomy? I have normal conversations, and in the back of my mind, that's the kind of stuff that pops up, and that probably always will. I don't feel like I need a support group or a therapist to deal with that. I just need to be able to mention it every once in a while, without folks acting like I just made death up as a concept out of spite.

On that note, or actually totally unrelated to that note, I'm going to do something here that I haven't done before--include a poem. You would think that now that I've been off of work for a few weeks I would do some creative writing or something. Not so much. I'm exhausted due to lack of sleep, and when I'm not trying to nap or going to the hospital, I try to get some exercise, do housework, go to the grocery store. There's not a lot of time for writing, especially since I write this blog. This takes up all my mental energy right now. Also, I think I need to be a few steps away from cancer to really be able to write about it in a creative way. I hope I have a chance to get a few steps away from it, that this treatment that will end in December will be it, but you never know. Anyway, writing this blog today made me think about a poem I wrote about 10 years ago on a napkin in a coffeeshop after watching this young woman talk with her boyfriend at a nearby table. I don't think this poem is particularly good, but it is a poem about scars, and how many of those are there? That's a good question, actually. Feel free to send some my way if you find any. Meanwhile, here's mine, for what it's worth.

Accidental Figure Model

The art of the body is so beautiful in women,
and you--you could be the subject
or the object for all the masters,
their reason for expending time and sanity
to recapture what could never
really be captured at all--your youth,
your style, the intensity of your made-up eyes,
bones angling and curving in ways
that are usually only theoretical,
but even more than that--your grace,
a presence that remains in the aftermath
of your sly grin, which could bring
a more personal closeness and character
to the eventual art of you,
the focal point of the memories
forever accredited to you.

If I could take these hands and make them move
in a way that could even come close to capturing you,
I would create mostly this:
A view from the side, a peripheral vision
of your ethereal arm, so thin and purposeful,
so brightly olive on this dark day,
making waves of motion for emphasis,
showing off the long, deep scar
that runs from your beautiful shoulder
down to your perfectly constructed elbow,
shouting out, I'm real, something else made me
before you ever came along.


  1. What I have never understood about the elephant in the room and the idea of talking around something one can't really ignore is that fact that one can't really ignore an elephant.

    But what one can do is see past it.

    And like your poem, that's worth everything.


  2. We're all going to die sometime, but yes, I'll say it... with cancer you do have a higher risk of it happening sooner. I'll admit that I've thought about it. Realized that I would still go visit Gabe and the kids without you there. Wouldn't be the same, though, not even close to the right universe. But I'd go whenever I was back in Chicago. To be with them. To be with your family, whom I love. I've thought about all sorts of scenarios. And of course, I'm crying a little while I type this. Because I want you to live for a long, long time.

    In the meantime, though, I don't think you're being negative if you need to talk about death. You have to honor your own feelings, including your fears. As long as you are honoring all of your hopes, and dreams, and future goals, too (which it seems like you really are), then your room gets bigger. That room with the big fat elephant of death in it. You do seem to be doing a good job of also keeping the room filled with hippos of hope, llamas of love, jaguars of joy, ostriches of outrage, turtles of tolerance, [I am purposely trying to be as silly as possible here to lighten the mood - how'm I doing?], platypuses of patience, crocodiles of courage, antelopes of affection.

    Go easy on Gabe. He loves you like the sun. You guys will get through these conversations, just take it slow. Maybe remind him that it's like an insurance policy - if you make plans for the worst, then you'll wind up never needing to implement them.

    P.S. Your poem is beautiful.

  3. Glad to see the poem. Sorry I haven't been able to talk to you guys in a little while; every time I get home it seems to be like it is right now (that is, some ridiculous hour to be calling someone with little kids). I'll give it a shot this weekend. And I'll search out some scar poems, if you really want some. I have read a few over the last few years, but my brain can't process well enough to place them right now. Anyway, keep writing new ones....