Monday, June 27, 2011


Today I took my first dose of tamoxifen, a drug that blocks cell growth in hormone-positive tumors. Tamoxifen has the unfortunate side-effect of sliding the body into a kind of early menopause. When people ask me if I'm done treatment yet, I'm not sure what to say, but the quick answer is no. I'll be on hormone-blockers for the next five years.

My fiance whipped up a fizzy drink and I took it like a shot. Down the hatch.

Radiation's kicking my butt. I have a huge red burn across my chest. I napped all day today, and all day yesterday. I've been trying to keep up with paddling, but yesterday I got into the kayak and promptly fell asleep.

The most hilarious radiation room song I've heard so far: Your Body Is A Wonderland by John Mayer. Your body is a wonderland... I'll use my GAMMA RAYS.

I've had some really great times with friends lately. And it helps to have someone tell me I'm brave over and over. I need to hear it, and holy crap am I ever.

Did I mention I'm half-Scottish?

Friday, June 24, 2011



This morning I went in to see a podiatrist about my sore foot. She gave me an enormous foot boot and ordered me to stay off of it for three weeks.

This way lies madness.

Wednesday, June 22, 2011

This and that

I spent last night watching the sun go down, geeking out with some friends and drinking soda and eating fancy food, on a beach covered in plovers and terns.

My busted foot means that I've been kayaking a lot. My knowledge of ocean wrack is exponentially improving.

I'm hanging out in the radiation lounge, and I just spent about a half hour cheering up a lady with cancer. I gave her all of the tips I'd learned, things like: It's okay to be sad. Use the social workers as much as you can. Talk to the dietitians about planning chemo meals. At the end, we hugged, and I realized that I felt a sense of peace about today - I've accomplished something important, so the rest can just be fun.

Monday, June 20, 2011

Why me?

Early on in my breast cancer experience I went through a period of guilt. I think that everyone with cancer goes through this stage. I asked myself, what did I do wrong that gave me cancer?

So, here's what I found out.

Genetics: Well, my mom had breast cancer. She was much older than me when she got it (sorry, mom!); also, she was the only one in our entire extended family who got breast cancer. But the known breast cancer gene mutations bring a greater risk of breast cancer in younger women, which might explain my situation. So, I went through a full battery of genetic tests.

The results? Nope, I don't have any of the known genetic mutations.

Known risk factors: Okay, there are a slew of known and potential risk factors. Research into these risk factors is splashed across news sites every few weeks: all sorts of foods might cause breast cancer, caffeine might cause breast cancer, alcohol might cause breast cancer, medications might cause breast cancer, eating skittles while skydiving might cause breast cancer. With many of these risk factors, the link is tenuous, and it's often later found to be unsupported.

Some risk factors do withstand scientific scrutiny. Here's a handful of them. My risk rises if I'm black (which I'm not), if I smoke (nope), if I started my periods young (nope), if I'm obese (nope). It rises if I don't have kids (yup) and if I have dense breasts (yup). There are also all sorts of studies about diet and breast cancer, but they're so complex and nuanced that I gave up reading them. I've run across vegans, people who are lactose intolerant, and people from all sorts of dietary backgrounds who have cancer. Unraveling that link, if any, is going to be complex.

I was on the birth control pill shortly before my diagnosis, and I agonized about that for a long time. But I discovered that the link between the pill and breast cancer is ridiculously complicated. Also, if I count back to the time when the cancer may have started, I wasn't on the pill.

The results? Well, here's where I get on my soapbox.

Once, I came across an article called 'A clean-living young athlete with breast cancer asks: Why me?' There are some assumptions in that headline that really bother me. And after my research, I'm confident that the answer is this:

We don't know why young women get breast cancer. We may not ever know. And not knowing sucks. But no matter what risk factors a young woman may have, her odds of getting breast cancer are very low. Only about 5% of breast cancer happens in women under 40. Something like 0.03% of women my age get breast cancer.

So, whether you're a clean-cut young athlete, or somebody who doesn't run a lot of marathons; whether you've got kids or you don't; whether you eat only carrots or drink booze and eat cupcakes - you still probably won't get breast cancer young. The vast majority of young women who fall into a known risk category don't get breast cancer, and many people who get breast cancer don't fall into any risk category.

Here's the important bit: as far as we can tell, bad luck plays a big part in whether someone develops the complicated and mysterious cellular mutations that cause cancer. Life is about calculated risks, and the risk of getting breast cancer as a young woman is small.

I don't want to minimize the issue; breast cancer in young women is awful and it's something that needs more attention (a little self-promotion there). It's the second leading cause of cancer death in young women, robbing many wonderful gals of the future they deserve. Also, for reasons that we don't understand, the disease is more vicious in the young. We need money for research; we need to find out, for example, if environmental toxins are a key factor. Maybe all we need to do is stop the production of a few chemicals, and we can save hundreds of thousands of young women needless suffering.

But, back to personal responsibility: I'm not advocating destroying your body through rampant partying and misuse. A happy body leads to a happy brain. But assigning guilt and blame just doesn't make sense. This is something I struggle to internalize, but it's true. We women deal with enough needless guilt as it is.

In the case of this crime against my body, the thief is long gone and there are very few clues. I need to leave the evidence for the scientists and activists to sift through; my job is to pick up the pieces.

Saturday, June 11, 2011

Day-to-day life

So, here's what I've been up to over the past couple of days. I think it's a pretty good slice of the emotions and activities I'm experiencing lately.

On Thursday and Friday I woke up, did some chores, and felt so incredibly powerful to be able to... load and unload the dishwasher. Unpack boxes from the move. Make breakfast. Although I'm grateful that my partner was able and willing to handle pretty much everything during heavy treatment, I can't tell you how useless I felt. Going from a rewarding, high-pressure job to my new job, "Trying not to throw up and sleeping all day", was... well, at least I was fully qualified.

Then I hopped in the car and we went to radiation. Yesterday's radiation room music was hilarious. Michael Buble's cover of the Spiderman theme song? Honestly? Zapped by a radioactive field, she becomes... ridiculously unlucky cancer woman!

And then, kayaking. Gliding over green water. Hiking in a beautiful arboretum. Having a picnic. The ocean. Late-night thunderstorms. Board games and friends. Insanely awesome nature experiences. Little baby orioles.

Most of me is able to enjoy these things, but a tiny part of me is always worried, thinking, I love this place. I want to stay. It's a strange and exhausting kind of double vision.

We drove home and a totally rocking music party occurred. I'm not any better at car dancing despite practice. But when I got home, I found that a friend had sent me a story about a woman who died of metastatic breast cancer five years after she was initially diagnosed with a less-serious cancer than mine. I had a moment.

Then I cuddled into bed, and woke up next to someone who I love so much. Who makes me laugh, and gives me hope. I got up. Lather, rinse, repeat.

Wednesday, June 8, 2011


I had my first radiation treatment today. The radiation team had a Bob Marley CD playing in the room, and I got to listen to "Get Up, Stand Up" while uncomfortably stretched out and confined on a treatment bed.

My geeky fiance has forged a special bond with my geeky radiologist. The radiologist saw me for about five minutes before she rushed out - but when I'd changed and walked out into the waiting room, I found her talking my fiance's ear off about radiation science. I have to admit that the whole process is dead cool. Y'know, when it's not terrifying.

I've been resting my foot and recovering from a cold, but kayaking every moment I can, taking pictures of nesting shorebirds and breathing in the salty air. I saw Tim Minchin live in concert and spent a bit of time with friends. It's been beautiful lately.

I found out today that I'm not allowed to wear anything sleeveless this summer. I'll have to wear high-necked t-shirts in order to keep the sun from damaging the irradiated area when I'm outside. I'd just bought a few very nice tank tops and tank dresses, and absolutely all of my hiking stuff is sleeveless, so, well, crap. If you have advice about what I can wear that's high-necked and mildly sleeved, I'd love to hear it.

It's true that the worst part of cancer is the way it threatens my life. But sometimes I feel like cancer's a bully, stumbling around punching little parts of my life in the face. It sounds like such a petty thing, but it took me a long time to become comfortable expressing myself through clothing, and to wear things that were comfy to me. Now, like a member of a snotty high school clique, cancer's telling me that my style is totally passe.

Sunday, June 5, 2011

You grew on me like a tumor

During one of my medical visits, my doctors told me that my cancer was probably growing inside me over the past 6 or 8 years.

This means that I've had cancer since getting to know most of you. My carcinoma was there when I was getting drunk at a fancy wine bar in New York City and hitting on the guy who would become my fiance. It was there when I took a dizzying bus trip to first see him, and when I told him I loved him. It was there while I was climbing mountains and slogging in swamps throughout my MS degree, and while I was learning the tango and how to make video games and gaining 50 other random skills. As I was turning into the person I am now, this very tiny thing was branching out in my breast.

On the down side, it's horrifying to imagine this thing getting into bed with me every night. On the up side, this has been me, in some sense, living with cancer. Imagine what I could do without it.

Thursday, June 2, 2011

Busted foot blues

My foot continues to hurt. I went to a foot doctor, and he ordered me to walk gently on it when it didn't hurt - so I tried this, and the pain came back tenfold. New doctor time.

I met with my surgeon and oncologist yesterday, and they recommended a podiatrist. I called his office first thing this morning and made an appointment, but he can't see me for three weeks. I brought out the C-card and he agreed to put me on his cancellation list as high priority.

I'm having a hard time with this. Even throughout chemo, I could stumble down the street to look for birds. Now I'm stuck in the apartment unless we go for a drive. And it's not just my mental health that's suffering; my oncologist is concerned because exercise decreases the risk of a cancer recurrence by something like 40%.

I'm trying to react to this the way I did during chemo, and with my old arm-related repetitive strain injury - imagining creative ways that I can stay happy and healthy within the confines of my physical ability. I've been kayaking, for instance, and I'm thinking of joining a gym so that I can gently exercise on machines that don't involve feet. Oh, and did I mention that I'm eating like a pro? My new best friend is kale. Kale.

But at some point I get so damn tired of expending the energy to come up with fancy solutions for my body's collapse.