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 I haven’t yet vaporized and been replaced by a crone, but the achiness is a reality.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? 

Monday, November 25, 2013

Cords, noobs and deer

My surgery was four weeks ago tomorrow, and its aftermath has melted my cockiness. It feels like someone opened my chest and duct-taped it shut in the exhaled position. Which is just about what happened: The surgeon scraped every last iota of breast tissue, including the fascia of my chest muscle, because the cancer went to within a millimeter at the deep margin (the back of the breast).

I also had 22 lymph nodes removed, and now know more about lymph than any normal human should. The lymphatic system is a sort of shadow transport system that moves interstitial fluid and the various waste products that collect there. The lymph system helps filter debris, fight infection, and keep the body’s fluids in balance by returning filtered fluid to the bloodstream.[i]

When you zap 22 lymph nodes, it’s like damming a bunch of tributaries. If I’m lucky, alternate channels will form and keep the lymph flowing smoothly; if not, back-ups of fluid in my arm will cause swelling and discomfort known as lymphedema. Being lean reduces my risk because there is less tissue and hence less fluid in my body, but the high number of nodes removed means I’m at risk regardless. Activities that increase risk include airplane travel, saunas and hot tubs, and carrying a backpack. Great…. Thoughts of hiking the Chilkoot trail with my kids have gotten me through this year; how can I carry 60 pounds without a shoulder strap? Pack animals, my physical therapist advised. 

A more immediate problem is that I developed a side effect called axillary web syndrome, or cording. It should be temporary, but it is pretty debilitating and painful, and is currently preventing me from beginning radiation. (I literally can't raise my arm above my head, the position I need to assume while getting radiated.) I could be the poster girl for axillary cording, but in the interest of preserving a shred of my dignity I am stealing a schematic to illustrate:

The cords are the consistency of piano wires, and it feels like someone tuned mine too tight. Straightening my arm out to my side or over my head is impossible. No one knows exactly what the cords are made of,[ii] but they're believed to be some combination of necrotizing lymph and blood vessels that no longer connect to a lymph node. My physical therapist snapped three of them (they actually made an audible snap) but said I probably have 19 more.

The surgical nurse told me, when I finally got the dreaded drain removed (15 days with that thing), that I need to touch the area where my breast used to be. I had shied away from the scar and the plucked-chicken skin around it. For one thing, it was and is completely numb. She said I need to touch it to retrain the nerves and to activate the lymph system. 

For some reason it came as an epiphany that I need to touch the skin of my former breast to bring it back from the dead. But it makes sense. As cheesy as it sounds, there is clearly some universal power to touch. Babies who aren’t touched fail to thrive; studies of spousal interactions document the calming effect of touch; other studies indicate that touch – a hand on the shoulder, an encouraging pat on the back – is correlated with improved performance in a variety of settings.[iii] Bolstered by this notion, and as the scar and swelling abate, I’m getting less squeamish about the surgical area.  

Part of my alienation from the part of my body formerly known as my right breast – besides the fact that it looks like Frankenstein's forehead – is missing vocabulary. Its lack of a name adds to the feeling that it’s a no-man’s land, some kind of demilitarized zone. Plus, it's impractical. Instead of telling my surgeon, “There’s some swelling in the area where my breast used to be,” wouldn’t it be handy to say, “There’s some swelling in my noob.”  

Or my whatever. We really need a word for it. I’m officially taking suggestions. 

Fortunately, disability has its perks. A few weeks ago my friend Debbie said her husband Ben, who had reached his deer limit, offered to get me my own deer by proxy. Alaska’s proxy hunt program enables able-bodied Alaskans to hunt for the elderly, blind and disabled. My first thought was, I’m not disabled! My next thought was, YUM! 

My anemic blood is pining for clean Alaska meat. I looked up the program. An Alaska physician needs to certify that I’m 70 percent disabled. Um, ok... Does that mean I’m unable to do 70 percent of the things I usually do? It’s 70 percent harder for me? I have a 70 percent less chance than normal of killing a deer? (Seventy percent of zero is zero, but no one asked how many deer I’ve actually killed.)  

I made a phone call. “What does 70 percent disabled mean?” I asked the program guy at the Alaska Department of Fish and Game. I outlined my cancer and treatment status. I told him my present condition is temporary. He said it sounded like I’m a good candidate for the program.[iv]
My primary care doc and friend, Kate Peimann, agreed and completed the affidavit. After an absurd amount of email traffic and a lot of help from Debbie and Ben, I acquired a hunting license and deer tickets and filled out a proxy authorization form. Happy hunting, Ben! I’m so excited I can taste it … venison burger … venison chili … venison curry …

Meat, prayer, miles, hats – the support and caring from friends and family takes many forms. A friend ran a marathon for me. Another told me her in-laws in Senegal are praying for me. Thank you. I feel it. It helps me keep stretching my arm when it feels like I’m fighting steel coils; it helps me believe I will be able to bring my family back together, that we will hike the Chilkoot trail, that I will live to raise my children and beyond.

Speaking of children, you know you're cancer patient when your five-year-old makes up jokes like this one:


Who’s there?

White blood cells.

White blood cells who?

White blood cells are busy!

If you have any jokes or riddles for Alder, please send them my way! As you can see we're desperate for some new material.

[i] If for some crazy reason you want to know more, the American Cancer Society has a good overview of the lymph system and its significance in cancer: http://www.cancer.org/cancer/cancerbasics/lymph-nodes-and-cancer

[ii] At first I thought, we can put a man on the moon but we don’t know what these cords are made of? But the last thing you want to do to a person with axillary web syndrome is biopsy the cords. By definition, a person with axillary cording is at risk of lymphedema; any cut or infection in the affected arm exacerbates that risk because the compromised lymph system means a compromised local immune system.

[iv] I don’t know if the proxy hunt program is unique to Alaska, with its subsistence tradition and Alaska Native culture of the able-bodied providing for the community, but I think it’s great. (I'll note that it's one of several blatantly socialist policies our state government embraces.) More info here: http://www.adfg.alaska.gov/index.cfm?adfg=huntlicense.proxy

Portia, Katie and Rosie at the butterfly house during a Seattle extravaganza for Rosie's birthday.
The "Great Wheel" juts out 40 feet past the pier and is especially awesome at night!

Debbie and I on (in) the wheel. I'm so glad I didn't chicken out, I loved it!

Unless it's homemade N. Douglas chocolate cake, Rosie's not a cake fan. She and Alder loved the chocolate tulip shell with fresh berries and whipped cream I improvised for her family b-day dinner.
Alder and a classmate on an all-school walk to the food bank to deliver donations.
The excitement this weekend was a surprise sleepover with Alder's friend Jerry while Jerry's mom was busy birthing a beautiful baby girl! After playing Legos until nearly midnight, they biked and played at Fort Flagler for three hours on Saturday. Alder introduced Jerry to the sugar-producing magic of fairy houses.