Tuesday, December 31, 2013

Radiation, and the illusion of control

I’m overdue for posting! Many thoughts, but I’ll start with an update. For the past few weeks I enjoyed a bit of a holiday from being a cancer patient. Chemo toxins purged, arm and shoulder recovered from surgery, eyelashes and eyebrows flourishing. I even got a falsie (aka breast prosthesis), so I am feeling downright human again.

The feeling might be short-lived, as I started radiation today and already feel like I have a mild sunburn in the irradiated area. I’m slathering it with something called Manuka cream and plan to procure more potions; apparently the impact is cumulative and the discomfort and fatigue tend to worsen through the six-week course of treatment.  

I’m getting used to my scar and zone of no-sensation, and so is Alder. I don’t know if I’m creating (yet more) fodder for future therapy sessions, but I don’t always bother to kick him out when I’m getting dressed. I was careful about the surgery area for a while because I thought it might be a jarring visual (well, it is a jarring visual), but he’s gradually seen more of it. And? He is entirely unfazed. So maybe I’m helping create a man who will see beyond women’s physical flaws, and will respond with compassion and caring … that’s my positive spin on it, anyway.

Anneliese, the Nordstrom bra lady who fitted me with a prosthesis, couldn’t nod vigorously enough when I told her I don’t plan to get reconstruction. She has an actual certificate in fitting misfits to breasts and bras, and has seen a lot. Given all that she’s learned, she said she’d go my route. Incidentally, she said the only really convincing faux-boobs she’s seen were on a former man.

I’m almost a month into Letrozole, the estrogen-suppressing drug I’m supposed to take for the next decade. I haven’t yet vaporized and been replaced by a crone, but the achiness is a reality. I’ve been able to exercise, which according to virtually everyone is the key to keeping the side effects at bay. Thanks to the treadmill, my walking is becoming jogging is occasionally becoming running… ever so slowly and fitfully. I’ve also started walking with a few women I’ve met on the island, and despite my effort not to make friends here, the companionship is a boon.

Winter break has been a peaceful blend of baking, sleeping, lounging and letting my kid do too much screen time, punctuated by the occasional visit to the great outdoors. Brian’s son Hatcher visited and we all went to a small resort nearby called Alderbrook over Christmas. The lobby cat, Alder, is the first non-tree I have met who shares my son’s name. I love hotels with big warm lobbies – this one had a big fireplace, gingerbread houses, a communal jigsaw puzzle, bowls of apples and oranges, two cats and lots of board games. I was in heaven. I re-taught Alder to play Checkers and we attempted Chinese Checkers, which I pretty much played for both of us.

Over Thanksgiving and Christmas I compromised my self-imposed dietary restrictions, which are a constant source of second-guessing – mostly from others and occasionally from myself. I fundamentally believe what we ingest has a huge impact on our health and well-being, but I don’t want to be one of “those people” who makes everyone feel like an ogre, who won’t go to restaurants with friends, who drones on about the nutritional benefits of quinoa versus brown rice, whom you have to text four times for ingredient approval if you invite her over to eat.

So like everything else, it’s a question of balance. The goal of my eating choices is to reduce the risk of my cancer recurring. There isn’t a lot of clinical data linking specific foods to increased or decreased risk of cancer (not because the links don’t exist, but because no one puts a lot of money into clinical studies that don’t involve a drug or procedure), so my diet is based on a combination of research[i], observation, personal preference and voodoo, all of which I like to sum up as educated intuition. Besides the obvious – eating almost no processed food and lots of fresh fruits and veggies – here are some of my basic dietary goals:

-no alcohol (big breast cancer risk factor)
-low-to-no sugar or refined carbohydrates (which are sugar, which cancer likes)
-only organic meat and dairy (I don’t want those nasty hormones)
-no tofu or soymilk (it’s a natural estrogen, which feeds estrogen-positive cancer, though the role of soy is debated and could be the subject of its own intensely boring blog post)

Then there are particular spices that are good  -- like turmeric – and fats that are bad – like canola and safflower oil and animal fats -- but it's all starting to sound very Portlandia. Blah blah blah, gluten, blah blah, tree nuts, allergens, toxins, blah blah blah.

None of these dietary restrictions has felt terribly onerous, which may be because I’m not a tyrant. For example, I just had to bake five batches of cookies in five days before Christmas, and obviously I had to make sure they tasted okay. 

My self-imposed diet plan has gotten somewhat mixed reactions among the medical crowd. One oncologist said, “I hope you’re not blaming yourself for your cancer – you didn’t get it because of what you ate.” No, I said, totally exasperated, I don’t blame myself. What I thought but didn’t say was, Why must eating well invoke psychosis? A radiation oncologist told me diet is unrelated to cancer except in cases of metabolic disorders, which I clearly do not have, so I should eat whatever I want. I think my medical oncologist, who pooh-poohed some of my dietary decisions as not supported by clinical data, was mostly concerned about my losing weight, which did not happen.  

I understand that the docs are trying to temper my expectations about being able to master cancer. And it’s true – the effort to control what I’m putting in my body is at root an effort to control what happens to my body. I know the impact may be marginal, but in the face of an uncharted future, it’s healthy and necessary to focus on the things we can control in order to stay sane and stay positive. As I told one dubious doctor, “I know – it’s the illusion of control, but it’s working for me.”

Wishing you all love, laughter, good food and good health in 2014.

[i] The following website provides a well documented, annotated list of foods – the good, the bad and the ugly – for breast cancer: http://foodforbreastcancer.com/recommended-foods.php Another great source is the cookbook/guidebook, The Cancer-Fighting Kitchen by Rebecca Katz.

For some reason this reminds me of a scene from a Woody Allen movie... it was my radiation simulation. The real thing involves a different contraption but the pink robe is my actual institution-issue radiation garb.
My friend Laura sent an amazing gift -- 43 (I counted) hand-made cards from kids (and a few adults) with riddles and jokes for Alder. One of our new faves: What did one snowman say to the other? (Answer: Do you smell carrots?)
Hatcher and Alder with their first round of all-you-can-eat Christmas brunch buffet.

Twelve minutes later.

Rainbow catch at Fay Bainbridge State Park

Sunday, December 8, 2013

Attitude and gratitude

I'm thrilled my surgeon was able to cut me open and remove my cancer, but thanks be to God for my physical therapist for repairing the damage. Thanks to her, my arm motion is greatly improved, and with it my outlook on life. I had my radiation simulation, which is when they do a CT scan to determine exactly how they’ll line up your body for radiation, and tattoo little dots on your chest to use as guidelines for each session. The plan is for me to start in two weeks (they’re busy), and to have 33 treatments, the last five of which are a “boost” to the scar area, which is apparently especially vulnerable.

The point of radiation, and of all of it, is to try to eradicate any cancer cells that may be lurking in my body. Cancer cells are tenacious, and even when you poison them with chemotherapy, cut them out with surgery, nuke them with radiation, there is still a decent chance they’ll sneak back to life at some unknown future time.

Hence the fourth prong of the attack: I’m to take an aromatase inhibitor for ten years to shut down estrogen production in my body. I shuddered reading the list of common side effects. I’ll spare you the details and give the take-home message: the stuff is old-ladyhood in a bottle. When I squirmed and asked my oncologist for clinical data on my chances of recurrence with and without Letrozole, she sternly told me this drug will reduce my chances of recurrence by 50 to 60 percent, and is basically non-negotiable. I procrastinated for eight days and then swallowed the first pill last night. Ten years. OK, sigh. I can do this.

My hair is beginning to grow in, all fuzzy and baby-like. It’s kind of patchy and uneven, and I figure it’ll be a slow process, but it’s nice to run my hands over my furry head. Oddly enough, my eyebrows decided to give up just as the hair up top began to return. I thought my eyebrows were critical to my sense of humanness but it turns out I barely noticed when they fell out.

It’s funny all the things we think are essential until we lose them, at which point we realize we can live with just about anything. It’s not always a great thing, this human adaptability. I remember an exhibit at the Museum of Science in Boston that fascinated me as a kid. It was a simple illustration of human population growth that said something like, “In the year 2020 (or probably some year that’s already gone by), there will be one person per 2.3 square feet.” Lines on the floor outlined the space, and we’d take turns standing in the square and imagining the entire world filled with people in their squares.

It was a horrifying image but I thought, that will never happen. People just won’t tolerate it. But for better or for worse, we humans will pretty much take whatever comes. There is a vast difference between our wants and our needs (if anyone figures out how to teach that to my kids, please let me know) – and right now my needs feel very simple. Food is essential; eyebrows optional. Warmth is important; two breasts, not so much. Sleep is key; all the stuff in my Juneau basement, dispensable.

Venison is edging close to the essential line in my life right now, and I’m pleased and just a bit proud-by-proxy to say "my" hunt was successful. Ben and our friend Kyle spent a day in 33-degree rain – a bone-wearying cold only Juneauites fully appreciate – boating and hunting and butchering. A few days later Ben gave two Styrofoam boxes of plastic-wrapped packets of nutritional gold to my friend Layla, who hand-delivered them to me on Bainbridge. “Here’s the carry-on carrion,” Layla said when she handed me her black hockey bag. Service with a pun; I am truly blessed.

At Layla’s insistence, I made her “super-iron” African-style palaver recipe as my venison opener. It was as delicious as promised and I gorged on it for two full days.[i] I swear I can feel my red blood cells plumping up already. 

Last weekend Alder and I went to Boston for Thanksgivikah.[ii] I got to meet several of Rosie’s new friends and their families, and spent quality time with my own family and a few close friends who are still in the area. We did a jigsaw puzzle and jumped on pogo sticks and overate. I got a girls’ night with my cousins and sister-in-law where we gorged on Indian food.  

My cousin Judith experienced the sudden death of her 38-year-old husband a few months after John died. It was a surreal double-whammy for our heretofore super-stable family, and Judith and her kids have been a huge source of support and kinship to me and my kids. “Love” isn’t really a strong enough word for the feelings Rosie and Alder have for their cousins on both sides of the family. They feel intensely connected despite growing up in Alaska, and I believe those connections – that feeling of being authentically and indelibly loved – are the most valuable asset they have. Apologies for descending into the trite; blame it on the season!  

[i] Plasas or palaver stew

1 pound minced lamb, beef or venison
2 onions, chopped
2 pounds kale, finely chopped (or a big pile of any greens)
1 red or green chili pepper, de-seeded and chopped
½ cup peanut butter (or skip the chili and use a chili-spiced “artisan” nut butter like I did)
Cooking oil
Soup stock

Heat the oil and cook onions until translucent. Add the meat and peppers. When meat is browned, add kale. Add enough stock to cover. Boil, then cover and simmer 20-30 minutes. Stir in peanut butter. Cook ten more minutes. Add salt and pepper to taste. It’s good with brown rice or chunky pasta.  Layla says it freezes well.

[ii] Thanksgiving + Chanukah.  The two holidays coincided this year, spawning all sorts of memes, including my personal favorite, the menurkey, or turkey-shaped menorah. The best thing about Thanksgivikah is its ridiculous name; the worst thing is that it undermines the point of Chanukah, which is a trumped-up secondary Jewish holiday meant to assuage  modern American Jewish kids’ Christmas envy. But this year’s Chanukah and its bounty will likely be long forgotten by the time Christmas rolls along. As will the drowned-out message of gratitude Thanksgiving is supposed to teach.  

Rosie, Izzy and Lila light the menorah

Improvised menorah on Bainbridge with carrion-carrying Layla
Rosie on her new pogo stick    

Alder on his new pogo stick

I am grateful to Ben, Alaska, and especially the Sitka black-tail deer for this gift.

Joyful in anticipation of the miracle-working hands of my physical therapist
Cheesy posed selfie, taken today on a frigid walk. Who knew Seattle got so cold?