Movements

The past few days have been busy and kinda intense.

On Friday I had my radiation planning session. I lay in a CT scan machine while technicians drew all over me in sharpie, repositioned me, scanned me, and eventually tattooed me with six little dots so that the beams of radiation would be aimed perfectly.

One of the oddest things about this experience is that so many of these events would have been significant just on their own, but they're all piled up together so I don't have much time to fuss. I never imagined that my first tattoo would be a scattered bunch of dots representing the Boobie constellation.

Other things that happened: my foot continued to hurt, and I went to a foot doctor who told me there's not much to do for it but ease back into walking. (Being semi-immobile is unbelievably frustrating.) We said goodbye to a friend and ate incredible Cambodian food. We got a flat tire on a really busy downtown road. And we're in the midst of moving from our old apartment to a new one.

It's strange to be moving in the middle of treatment. The old apartment was the one where I got diagnosed, where I looked at my body in a bemused way as I showered after my first surgery, and where my family came up over the holidays so I wouldn't have to travel during chemo. We never intended to stay there for more than a few months (it was a short-term lease), but leaving it behind is confusing.

However: our new apartment is incredible. My fiance, his family (my family now! They are an awesome family) and our friends have been absolute heroes about moving while I grumpily nursed my foot. We have our own place with furniture that's ours. It's peaceful.

What else? Oh, I went to an art gallery event for young people with cancer. It was put on by my hospital, and was the fourth in a group of visits. The other patients are wonderful, brave people. One woman got cancer when she was 23. We talked a bit about the 'theme song' music we listened to during treatment, and she shared hers with me:


I was a big Dave Matthews Band fan in high school. This was one of my favorite songs, and it's strange but appropriate to hear it ten years later in a cancer context.

Busy

I have a lot of things to write about, but we're moving and there's a lot going on. So, here's a picture from a quick kayak trip that we took yesterday. We bought the kayak last fall, the day before my most frightening scan. It's coming in handy on days when my foot hurts too much to hike a lot.

Besides packing, the past few days have involved a zillion doctor trips (not unusual), but also some great meals with friends, a whole lot of sun, some sweet shopping, and an excellent night spent watching documentaries about the deep sea. I also bought a book about tide pool critters and have been trying to teach myself the names of algae and sponges.

Rad

On Saturday morning we heard a weird knocking sound in our living room, like someone was hammering in morse code. I couldn't figure out what it was, but my fiance insisted that it was a woodpecker tapping on the house. I told him that this was ridiculous.

We went to the window. Sure enough, there was a little downy woodpecker trying his best to carve a hole into our shingles. Whaaaat.

Today we woke up early and went down to meet with the radiologist for the first time. I kept yawning -- my energy's still totally depleted from the surgery. Luckily my gentleman friend took notes. The radiologist was a huge nerd, which suited us just fine. She quickly adjusted her explanations once she figured out how much of the science we knew and didn't know. It was pretty impressive!

I'm going to get zapped with the same amount of radiation as a person would've gotten at Chernobyl right at the reactor over a span of ten minutes (but in a very localized way). This explains why it'll take the radiologist a couple of visits and a week of calculations before she feels comfortable putting me on the table. I'll be getting 33 treatments over a span of a few weeks.

The list of side effects sent my head spinning, but it's no worse than the side effects of all my other treatments. My body's been through an unbelievable amount of stuff.

Mental maps

I thought I'd write a post about mental health. It's a sensitive topic for me, but it's been a really important part of my care.

My cancer clinic has an incredible mental health program. But I didn't take advantage of it at first, because I wondered, what could a counselor really say that would make things better? I'd had therapy in the past that took a hard look at my anxieties as an overreaction to situations. This was new.

When I finally reached out a tentative hand, though, I got a whole lot of very valuable help. I got a psychologist who put me onto an antidepressant (Lexapro) and some anti-anxiety meds for the worst days. I got a social worker. And, maybe most importantly, I got a really amazing psycho-oncologist.

Yep, psycho-oncologist. I love that word.

The goal of this mental work hasn't been to make everything okay. Cancer sucks. Sucks, sucks, sucks. And it's a uniquely challenging thing to experience as a young person (maybe I'll talk more about this in a different blog entry). What has happened, though, is that I'm able to enjoy almost all of my days. I go on vacations. I love my friends, I go to parties, I smooch my boyfriend. I eat good food. I'm able to take good physical care of myself, and for the most part I have a decent quality of life.

It's been a lot of work with everything from existential questions to the basics, but it's worth every moment.

Almost too sleepy to type

Today I woke up in a state of serious worry. It was de-draining day.

I've learned that it can be much less painful to get chunks of your body removed than to get medical devices implanted. The two drains made the last few days miserable; every hour or so they'd get jostled and I'd feel a sharp, intense stab in my chest. Sleeping was really difficult, and it was made more difficult by all of the painkillers, which gave me awful dreams. I tried watching comedy shows before bed to get into a calmer state of mind - and spent the night fleeing nightmarish versions of Liz Lemon and company.

So, when I was told that I'd get my drains removed today in a process that would involve no anesthetic, I was pretty unhappy. Even if it meant that I could appear in public without looking like I was pregnant with something horribly wrong.

In preparation for the visit I got two extra-strength tylenols and two oxys "on board" (as the nurses say). Then I limped to the car and we traveled to the hospital. I'll spare you the details of what happened next, but the nurse was wonderful, I held my mom's hand, swore only a little, and suddenly the drains were gone! I could stand up! And breathe! YESSS!

Then my mom, fiance and I went out for a celebratory lunch. I ate salmon and drank a very rich hot chocolate. We chatted and watched the leaves of a silver maple flutter in the wind outside. I went home, sat down, and suddenly felt so exhausted. There was a blur of time and now it's almost midnight.

Time for sleep.

Drained

This is going to be gross; you are forewarned.

There are two drains coming out of my surgical site. They're plastic, and end in containers that I have to empty several times a day. I need to measure the output. Once it's below a certain cc, I can have them removed.

They're really unpleasant to empty. I learned yesterday that I can only do it when I'm on a full dose of painkillers. I have a pretty idiotic urge to take fewer painkillers than I'm supposed to, and it's been driving my caregivers crazy. But after yesterday's experience I'm just going to swallow my oxy and tylenol like a good girl.

I'm living in a haze of drugs. Being a bionic person is a whole lot less fun than it is on tv.

Home again, jiggety-jig

Blogger was having severe issues over the past day, deleting posts and forbidding updates. This is probably a good thing, because I spent most of my time in the hospital seriously, deeply stoned.

It would have been a nice sleep if someone hadn't come by every couple of hours to take my temperature, check my bandages, give me some painful shot or exam, or (most hopelessly) try to give me some instructions. But boy, did I ever get nice hospital care otherwise. Here were the perks:

• I had a private room, which was a good thing because all of us folks on that floor were pretty sick.
• They let my fiance stay over. I had been dreading spending the night alone, but they let me have someone to hold my hand and tell me I'm hardcore.
• The food was amazing. On my first night I ordered some delicious soup, a salmon dinner and chicken with gravy and fruit. Munchies, maybe?
• The nurses came right away when I needed something, and they really advocated for my care.

But it's so good to be home. My mom is here, and the bulleted list for that would stretch off the page.

Surgery time

My surgery is finished and I'm up in my overnight hospital room. Everything went well this morning. I'm still full of drugs and out of it, but very comfortable. The staff here are so nice. This is taking a long time to write, so it's time for me to snuggle into this bed and nap.

You are over-encumbered

I've been feeling very subdued and slow. The major upcoming surgery, my awful flu of last week, and my busted foot have made things more challenging. I'm not depressed, just thoughtful and physically exhausted. I'm definitely being less social than I should be.

The other night a friend came over and we sampled some gourmet lollipops for the wedding while putting together the invitations that she'd designed. Even though I was tired, there was a lot of joking and eating and fun, and the invitations are amazing.

I've been playing a lot of The Elder Scrolls iv: Oblivion. This is a video game in which I am a powerful but tiny lady with an enormous club that shoots fire. Enough said.

I'm trying to be patient with myself. I'm hugging my fiance and breathing.

Am I cured yet?

This is a tough post to write, but I think it's pretty important.

People keep asking me when I'll know that the treatment worked and that I'm cured. It's a totally reasonable question, but it's also, unfortunately, impossible to answer.

Detecting cancer cells isn't an exact science. Mammograms don't catch all cancers, breast self-exams are useful but crude, and the mother of all scans - the PET/CT - can't detect the tiniest of tumors.

Treatment isn't perfect, either: the goal is to eliminate enough cancer cells so that the body can clean up the rest of it. Once breast cancer spreads to the rest of your body and takes hold, it's incurable. (Compare and contrast to Lance Armstrong's cancer, which was curable even though it had spread to his brain, lungs and bike helmet.) To read more about this stage, check out this extremely excellent article.

In the middle of the night, I sometimes ask myself, where's my tricorder?



There's a big misconception that once treatment is done, it's over. Here's the truth: once treatment is done, the waiting begins. Every ache and cough could mean that the cancer has spread. If I make it two years without the cancer spreading, that's great. If I make it another three years, that's really great. If I make it ten years, the odds are low that the cancer will spread. Hormone-positive breast cancer is never, ever declared cured.

I'm not going to detail my odds here. Though there's reason for optimism, they don't paint a full picture, and the more we learn about my cancer as we go, the fewer statistics there are for my unique situation. I'm at one of the best cancer centers in the country, and my cancer is somewhat slow-growing. Breast cancer is relatively treatable when compared with some other illnesses. These are comforting to me. But if I continue to be afraid for a long time, here's why.

Regrouping

My mom gave me some much-needed advice yesterday: I need to take it easy.

I'm not very good at doing nothing. Last week I hiked like mad, tromped through the mud, busted my foot, and so on. And that's why I got so sick. It was confusing to feel a little bit healthier after the chemotherapy, because it seemed like I was suddenly just as strong as I've always been - but anything feels like perfect health compared to the four-month-long emotional and physical struggle of chemo.



So, yesterday and today were mostly about getting over the tail end of that flu: sleeping, drinking water, snuggling into a new sweater and breathing the steam from copious amounts of tea. But I did go on a very gentle bird-watching walk.

I've become a total hedonist lately, squeezing pleasurable experiences out of the moments when I'm not feeling terrible. I'd like to write about that, and also about more serious cancery things, but right now I'm relaxing. Mom's orders.

Low points

I'm sitting in the prep room for my next surgery. I'm wearing a pretty swanky robe. They also gave me a hairnet, which strikes me as totally hilarious.

Yesterday I went to a walk-in clinic to get a sore foot checked out, and it turns out I probably have a little fracture in a metatarsal. So, I got a special shoe.

Then, last night, I started feeling really achy and sick. I took my temperature, and sure enough, I had a fever. Looks like some kind of gastrointestinal bug.

So, limping and nauseated, I dragged myself to surgery this morning at 5:30 am. People stared at me in the waiting room. This happens a lot, probably because I'm usually the youngest person there, but today I found it pretty funny trying to guess which of my three problems they were looking so worried about. As I'm typing this, my docs are deciding whether to operate.




... Aaaand it looks like I'm being pushed to next week.

On the one hand, I'm sad - I'd emotionally prepared myself for this surgery, and now I have to do the same thing next week. On the other hand, all I want to do is chug this gatorade and sleep for a thousand years, so wish granted.

Women

Okay, time for a happy post.

Confession time: growing up, I had mostly male friends. This was pretty much an accident - my interests were, at the time, mainly male-dominated. As time went on, I awkwardly stumbled toward the goal of building a social life that also contained a group of strong, supportive women. And I mean awkwardly.

So, here I am, planning my post-treatment wedding (which, by the way, is a pretty big act of hope), and I realize that I've reached place where I can muster up a big pack of bridesmaids, all from different places and points in my life, all absolutely incredible women. And I'd totally have a dozen bridesmaids if it wouldn't be ridiculous. (Not to mention an imposition - asking all of my gal friends in the world to color coordinate seems unnecessarily cruel.)

I've met some female cancer patients since the diagnosis who are the strongest people I've ever known. My doctors are also incredible, geeky, brilliant ladies. And I'll probably write a completely separate post about how the women in my family are facing this disease with me, because it would just choke me up right now.

I love you all, and I'm so grateful that you're in my life.

When you face cancer, some people want you to come out of it completely different, treasuring every single moment. Honestly, I think it's effing impossible to treasure it all, especially the parts where you take off a hat and your wig decides it's a good time to hurtle into the air like a furry meteor, or where your good friends klonopin and ativan are the only things keeping you from solid panic, or where you need to jump in the bath for the sixth time that day just to quiet the pain in your bones. A friend of mine and I were talking about how cancer hasn't fundamentally changed who we are - it hasn't given us a personality-ectomy.

But there are a few small, cheesy ways that I've changed. I pause more often than I used to (which was, actually, pretty often, because I'm a sap like that) to appreciate things like this.

The story so far

In the fall of 2010, I made an appointment to get a regular checkup with my gynecologist. A few days before the appointment I noticed a tiny lump in my breast. My mom had a history of benign breast lumps, so I figured that my lump was similarly benign.

My gynecologist did an exam and also noticed the lump. He wavered about whether to get it checked out, because:

• breast cancer in young women is incredibly rare.
• the first step toward diagnosis is an ultrasound, and then all suspicious lumps get a biopsy. Of the lumps that make it that far, only 1/20 is cancer. The American Cancer Society has pulled away from supporting breast self exams in part because of the unnecessary biopsies.
• young women have pretty dense, lumpy boobs.
• they didn't want to make me nervous.

Just to be cautious, I pushed to get the ultrasound. I didn't think it was cancer, but I figured I was being a good health-conscious lady and it would help me learn what non-cancerous lumps are like.

The doc didn't like what he saw, so I got a breast biopsy.

A week later, my gynecologist called me, totally shocked. "Invasive lobular carcinoma medical word medical word" he said in a rush. I looked it up. Shit.

The initial news looked great - my cancer's really tiny, just 1.6 cm at its longest end. However, later tests found that the little guy had spread himself around. This is a matter of luck, as is so much with cancer. Like people, each carcinoma is unique (but unlike people, they are all assholes). I got the full swath of genetic tests, all negative.

Suddenly I found myself at 29 with later-stage (but non-metastatic) breast cancer, facing surgery, chemo, surgery, surgery, radiation, and probably more surgery if they can find something else to chop out.

As of this moment, I'm done with some of the surgery and all of the chemotherapy. There was still cancer in my breast after the chemotherapy (in a margin that had to be cleaned up - more shitty luck) so I'm headed for more surgery. We're racing to catch the cancer before it goes metastatic.

I'd just finished grad school, and I'd done my first internship. I was about to start a career. I was about to get engaged.

Some of this continues with cancer. Some of it stops.

So, here's what that's like.