Monthly Archives: October 2010

In the Name of Cancer

On a Saturday morning in early October Josie and I were headed to a birthday party when we arrived to find the main road into the park blocked by a stage, tables and an abundance of balloons. There was no easy way to get to the playground, dog park, soccer fields or the Gymboree where the party was being held. I took a few turns trying to figure out how to get there and so did everyone else who wanted to use the park that fine Saturday morning.

Finally I found the right building. I was trying to park when a woman came running, waving her arms with fire in her eyes – clearly caught up in the adrenalin of a live event. This road is closed, she yelled, this road is closed!

I rolled down my window, pointed at the building and said I was parking for a birthday party over there. She told me I wasn’t allowed to be there and she was so adamant that I turned around. As I drove away she screamed – It’s a walk to benefit breast cancer!

Seriously?

I didn’t know what to think at first. Did I feel a little guilty because, after all, I’m alive and cancer-free? Sure, I’ve lost a few body parts and a few friends but not my mother or my sister. I wondered if I should feel bad because I had been frustrated with the woman. Then I remembered that I wasn’t the one who was frustrated. I wasn’t the one who raised my voice. I was just looking for parking. I was just trying to get my 3 year-old to a birthday party.

Eventually we made it to the party. We had a lovely time. As we drove out I saw the woman. I didn’t say anything to her but I wish I had. I wish I had stopped and gotten out of my car. I wish I had said that I wasn’t mad or upset or threatening her in any way. I wish I had re-iterated that I was just trying to get my daughter to a birthday party, and that I had, in fact, been parking in the right place. I wish I had told her that I was sorry for her loss, that I was sorry for her grief.

I wish I’d told her that I’d had cancer once. I wish she’d told me her experience. I wish we’d really listened to each other. Then without giving her a hug or sharing any tears or secret handshakes, but simply as one compassionate adult to another, I wish I had said goodbye and been on my way. Most of all, I wish we’d both really heard each other. Maybe if all of us did more of that, then maybe someone would stumble upon a cure for our sadness.

Awash in Squash

Garden Update: first it was the broccoli, then the greens, now we’re awash in spaghetti squash. The vine took over the 4’x10’ bed then tried to crawl across the aisle and up the bean trellis. A few weeks ago I noticed that the vine had withered and died and I decided that even though they were still a little under-ripe it was time to bring them inside. I had 8 of them lined up along our kitchen counter.

I think we may hand a few out at Halloween. Here kid, have a giant under-ripe squash. Boo!

Or maybe we’ll hand out kale. The kale I planted in the spring never bolted, it’s still growing and producing. A few weeks ago, I thinned out a few plants but I still have three. They’re taller than I am. I tied their stalks loosely to stakes so they won’t blow over. I expect them to walk into the house and curl up next to the fire any day now.

Hey kid, would you like a Reese’s peanut butter cup or… a stalk of kale?

Anyway, what are you awash in this fall? Are you planning to grow anything over the winter?

Here’s one of my favorite spaghetti squash recipes. It’s kind of like lasagna only without noodles and with squash so really nothing like lasagna. Forget I said that. Of course, it’s gluten-free. I made a Josie a special dairy-free section without the cheese.

Recipe: Spaghetti Squash Gratin with Tomato Sauce

Ingredients

  • 1 2 lb spaghetti squash
  • 1 lb ground buffalo (or beef)
  • 1 tsp olive oil
  • 2 minced garlic cloves
  • 1 tsp salt
  • 1 tsp pepper
  • 1/4 tsp crushed red pepper
  • 2 28oz cans whole tomatoes drained and chopped
  • 3 oregano sprigs
  • 3 thyme springs
  • 1/2 c grated Parmesan
  • 2 tsp chopped fresh oregano
  • 1 tsp chopped fresh thyme
  • 1 15oz carton ricotta

Instructions

  1. Preheat oven to 400.
  2. Pierce squash with a fork and place it on a baking sheet. Bake for at least an hour or until tender. Cool. Cut squash in half lengthwise. Throw away the seeds and use a fork to remove spaghetti-like strands to measure 4 cups.
  3. Brown ground buffalo (or beef) in a frying pan.
  4. Heat olive oil in a large sauce pan over medium heat. Add garlic and cook for 2 minutes. Add 1/2 teaspoon salt, 1/4 teaspoon black pepper, crushed red pepper, tomatoes, oregano and thyme sprigs. Bring to a boil. Reduce heat and simmer for 20 minutes. Discard oregano and thyme sprigs. Mix in browned buffalo, Parmesan, and remaining salt, pepper, oregano and thyme.
  5. Layer squash, tomato and buffalo mixture, and ricotta cheese in a 9×13 baking dish. Bake at 400 for 50 minutes.

Trust

Back in the spring when it was clear something was wrong in our house, when Josie started behaving like a colicky baby, waking up for two hours every night and screaming for two hours every day, I took her to a new pediatrician. He came highly recommended for complex cases and was considered to be fairly woo-woo. A friend told me he had a naturopathic physician in his office – my dream come true.

At our first appointment, he ordered more blood work, an EEG of the frontal lobe of her brain, and a breath tolerance test. The tests were going to be such a pain and I really didn’t think they were going to find anything. Here was an MD I respected who was taking my thoughts and concerns seriously and making suggestions and all I wanted to do was roll my eyes and say, an EEG, really?

The EEG was awful. It didn’t hurt her but I did have to hold her still for a long time then try to get her to fall asleep. The blood draw was hard to get. It took 3 visits and multiple tries. By the time we were done, Josie was crying, I was crying and I think the phlebotomist was on the verge.

When those tests came back normal, I decided we needed to take a break. The final piece, the breath tolerance test was supposed to take 3 hours and I just didn’t have it in me. A few months had passed when I finally decided to schedule it, not because I thought it would yield illuminating results, but because I wanted to see this doctor again and I didn’t feel like I could go back without following through with his recommendations.

So I started talking to Josie about the test a few days in advance. I explained that we’d go in the morning, that we wouldn’t have any breakfast, that she’d drink a glass of special juice, then breathe into the tube every 30 minutes for 2 and a half hours. They’d be able to tell by her breath if something (lactose) was giving her tummy ache. If she was unable to digest lactose they would find a level of hydrogen in her breath that would reach its peak after two hours – that’s why we had to stay so long.

We arrived the morning of the test, loaded down with bags of her favorites books and toys and a few snacks for when it was all over. We’d had three breath samples, and had been there for about an hour when the tech came out and told us we were done. We could go home.

But… Wait… I mean, we haven’t even touched the DVD’s yet. She’s only just now started rolling on the floor. We still have toys to play with. We’ve been pacing ourselves!

We were done. They sent us home after an hour because she’d already reached the top level, demonstrated the strongest reaction possible. They didn’t even want to see what happened when the level of gas in her tummy peaked at 2.5 hours.

Apparently our girl is totally off-the-charts lactose intolerant. You guys, I almost didn’t have her take the test because it was a hassle and because I didn’t think it was the real problem.

This is something I’ve had a problem with in the past. There are so many tests I wish I’d had. The things I could have learned – that I had endometriosis, that I was allergic to gluten, that I was B12 deficient. I should have let the doctors do their jobs. Here’s what I’m learning: when looking for the cause you’re bound to run into some dead ends, but you’ve got to go down those roads to see where they lead anyway because eventually, one of them may actually lead to a castle or a princess or a pony in a field, and I’ve always wanted a pony in a field.

The Rules of the Pink

I like October, fall, Halloween and the month of Josie’s birth, but I’m not fond of breast cancer awareness month. It started with the first October after diagnosis when I picked up a local magazine that had a story about my new label, Inflammatory Breast Cancer. There was a picture of a teenager with her pompoms. She had symptoms and a diagnosis similar to mine; she died after six months. I read that it wasn’t a question of if it returned but when. I know that I’ve said this before but I have to repeat it, to mimic the track that runs over and over in my head, it said I had a 10% chance of living 5 years.

Then there was the tv news. I was fast forwarding through commercials one night when I saw the flash of a photo of a red, irritated breast, the mark of inflammatory breast cancer. Against my better judgment, I stopped to hear what they had to say. It was a teaser for the late-night news. The reporter said something sensational like: Are your breasts trying to kill you? That night I dreamt that I was filled with green spiders that were killing me from the inside and spilling out of my mouth and down my arms. It took months to get that image and those words out of my head and my dreams.

And then there’s all the pinking. Sure, when I was first diagnosed I found comfort in the pink. It was nice to know I was part of something bigger, that there were people living through this every day. But as I passed through treatment I began to feel like this was a club I didn’t really want to belong to. I’m not much of a joiner. I don’t really like pink. Inspirational symbols make me queasy.

I went to a cancer walk once when I was bald. I met a woman who was handing out pens with the website URL for an inflammatory breast cancer educational site. She started telling us about it. It was the deadliest form. I said I knew, that I had it. She gave me a sad look as if I was already dying.

I think she was the one who sent over the news crew that morning. When the reporter asked what brought me out for the walk I wanted to tell him the truth, that my mom dragged me. I wanted to tell him I was worried about my upcoming mastectomy, that I wouldn’t have enough skin to cover the hole where my breasts used to be. I wanted to tell him about the lesser known side-effects of treatment – Let’s talk about vaginal atrophy, shall we?

But I knew he wanted me to say something like: No one should have to face cancer alone or Together we’re going to beat this damn cancer, or some other rah-rah bullshit. But I could tell that he didn’t really see me. He didn’t care that I wasn’t a joiner or that I never liked pink. He saw the inspirational story he wanted me to be.

That day, I hadn’t had the fight in me or the presence of thought to articulate my desire for independence. Instead I just told him I wasn’t interested in being on television.

This time of year, when breasts invade the news, when even the milk cartons are dressed in pink, when giant pink ribbons are stretched across a football fields, I do my best to remember my early days accurately. I hold my unique fear and unique experience tightly in an effort to keep it from being repackaged and rebranded, and to keep myself from being engulfed in this homogeneous sea of pink.

Irretrievable

Norah’s a swimmer, not just a fetch-the-stick kind of swimmer, but an I-can’t-see-her-anymore, she’s-been-gone-for-an-hour, the-neighbors-called-to-say-she’s-headed-for-the-straits kind of swimmer.

One morning on the island we’re walking to my parent’s house at low tide, and while Josie and I turn over rocks looking for tiny crabs Norah leaves land to swim after a seagull. The crabs all scurry into the water and mud or under other rocks before we can catch them. All except the hermit crabs that stop where they are and retreat into their shells. Josie picks one up and pets it with her index finger.

Thirty minutes later, we’re done playing with crabs but Norah’s still gone. I scan the water looking for that tiny dot of a blond head on the horizon. Once she’s offshore, once her feet have left the rocks, we can call her all we want, but she will not come. She’s irretrievable. We’ve thought about leashing her on the beach but she loves the long swim so much and our fear of her drowning doesn’t seem enough to keep her from it. Instinctually she must know when she’s getting tired, right? We’re trying to trust that she will come back even if it’s an hour or so later.

This time when I spot her head I also see the brown heads of three otters. These aren’t the cute little sea otters that float on their backs, cracking open clams. These are river otters, overgrown brown rats that live in family groups of a dozen or so. There’s an island rumor that they lure dogs into deep water where they attack with their claws.

One otter dives and pops up further out. The other two stay at her sides – she’s surrounded. I think I’ve mentioned before that Norah is not really my favorite, beautiful, dream dog. She’s good with kids and nice enough, but she’s a black hole of screeching, whining neediness. People have recommended training, but really, I just don’t care. I’m trying to convince an almost three year old to hold my hand in parking lots, to wipe when she’s done with the potty and to use her words instead of her fists. And, after living with a dog who had a bad habit of biting people, a little (or a lot) of screeching doesn’t seem like a trainable offence.

Even so, Norah has grown on me. She’s become part of the family. I’d be sad to see her go if she slipped under the water never to return. But I cannot handle the thought of death by otter. I cannot handle the thought of her suffering. I cannot handle the thought of her blood spilled on the sand.

An otter dips under the water and pops up a few feet further out. It looks back at us and back at Norah. It dips and pops up again. Even though I know it will do no good I stand on the beach screeching Norah’s name. Once, I think she turns to me. I think she hears me but then she’s swimming out after the otter again. I yell her name over and over and over “norahnorahnorah.” She turns her head but it never lasts.

After watching her paddle after the otters for 15 minutes I have to leave. I take Josie up the stairs to my parent’s house and leave Paul to the dog. When I get to the top I can’t help but watch from the deck. I try to let it go; to leave it up to fate.

Forty-five minutes later, Norah crawls up on shore unharmed, thin and shivering from the cold. She trots up the path to the house and gives me a good shake and her usual what’s your problem look. I realize how similar that look is to the one I give her when she’s screeching at me. I pat her head and she walks past me without a hint of neediness to her favorite spot on the deck where she stretches out in the warm sun.

Teamwork

Sailing season is over. It happens every fall, and not because of the change in weather but because of the dwindling daylight. We’ve got to have time to get through traffic (even if we cut out of work early, and we do cut out early), get the boat rigged, and finish a few races before dark.

With any luck, it will be snowboarding season soon and I’ll pick up my love/hate relationship where I left off last year. Maybe I’ll go back to yoga or I’ll make it to my aerobics class more often. I enjoy all of these activities but none of them are sailing.

One of the things I’ll miss most this winter is my team. Teamwork brings to mind all kinds of cheesy cliché’s, but there’s something so beautiful about a good team. When I raced in my twenties there was so much ego involved, so much self-definition. As a young woman people often assumed I didn’t know what I was doing, and I spent precious time and energy proving them wrong. Now, partly because I’ve been sailing with Doug on and off for twelve (twelve!) years, the definition and egos are gone (mostly), even when we add a third crewmember. There’s just the beauty of synchronization.

Our teamwork involves more than physical coordination, the logistics of who hoists the kite and when, or who will stay down on a roll tack in light air but also how the larger decisions are made: whether the shift is persistent or oscillating, where the next puff will appear, and where we want to place our boat on the course. We have intense conversations, debates, heated at times. We draw pictures with tiny pencils on the fiberglass seats to make a point. We go to restaurants and use cups, salt shakers and straws to illustrate the boat and the course and the wind direction in an effort to reach a consensus. On such occasions, some of us occasionally regret having a glass of sake, wishing we could focus better and keep our debating skills sharp. We do all this without having an individual member of the team, even the tipsy ones, lessened, weakened or belittled by the exercise.

We took first place in eight races in a row this summer. We started the season strong, sailing well but not placing well. Then it was like we couldn’t not win. Every move one of us made seemed to complement the others. Of course, eventually, the magic ended but for those races in late-July we were in a state of near perfection – blue sky, white sails, and Mt Baker glowing pink in the evening sun.

For now, I’ll put my bag of sailing gear in the garage and maybe I’ll buy a new pair of yoga pants. I won’t think about sailing too much until some gray February day when I’ll be on the freeway, driving over Portage Bay. I’ll remember those cold winter afternoons of college sailing where we raced right up to the decks of the houseboats and waved at the people sitting on their couches, sipping their hot beverages. I’ll think about the slide of the boat into a roll tack — when every person has their motion that must be perfectly synchronized with the others and adjusted to suit the conditions. I’ll crave that movement like a runner’s high or a hiker’s summit. I’ll go home and watch this video and think about my team and count the days until daylight savings time.

PS – The video starts pre-race and continues up the first leg almost to the first mark.

AND – In case you (or your spouse, mother, brother, friend) hasn’t voted already, the contest ends on Sunday. Last time I checked I was 1% out of first place. Thank you, thank you!

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Accupuncture

When I was in chemo I tried nearly every holistic and western medical treatment. Yoga? Of course. Poison? You bet. Steroids? If you think so. Massage? Oh twist my arm. Vitamins? Definitely. Chi gong? Sure, sure. I was live experimentation at its best. When I started chemo I went to an acupuncturist and my sessions seemed fine, restful enough, and pleasant but I didn’t know if they were helping because I had nothing to compare them too. I’d never had chemo without acupuncture. Then my practitioner moved away.

I didn’t feel much worse for the next few weeks. Then I started seeing Darin at Seattle Cancer Treatment and Wellness Center. He was highly recommended and specializes in the treatment of cancer patients. I entered his office in the midst of weeks of terrible insomnia. When I left I was hardly able to drive home I was so sleepy (I’m just gonna rest myzzzzzzzsnort). At home, I crawled into bed and slept for hours. And that wasn’t the only change. My nausea wasn’t gone but it felt lighter, less crushing. I felt… Better. I have been a believer in acupuncture and a loyal follower ever since.

Since then several studies have come out testing acupuncture and nausea. This one was released around 2000 and found that “Seven of the 8 patients responded to the addition of acupuncture to control nausea and vomiting. These patients generally were able to tolerate additional courses of chemotherapy.” 

This year Henry Ford Hospital in Detroit ran a test on women with hormone positive breast cancer that compared acupuncture to the drug Effexor, an anti-depressant that has been shown to reduce hot flashes. Acupuncture worked as well as Effexor at reducing hot flashes, but with fewer side effects. Women receiving the acupuncture treatments reported more energy and a better sex drive than women taking the drug.

I still see Darin every few months to help me with ongoing problems like hot flashes and anemia. This year Darin was featured in Seattle Metropolitan’s Top Docs issue in the field of acupuncture. I couldn’t be more proud.  When we see each other we still need a good 20 minutes to chatter and get all caught up before the session starts. He has to see pictures of Josie and I have to hear stories about his dog – a great dane named after the Easter bunny who has her own facebook page and says things like I can touch my eyeball with my tongue. Maybe it’s the dog stories, maybe it’s the needles, or maybe it’s both these things, all I know is that when I leave his office I always feel better.