On Mortality

If you only read one book about living with cancer, this is the one to read. I ordered it as soon as my sister alerted me to its publication last June, and then it arrived, and my mom read it all in one sitting before bringing it to me to read. It’s written so beautifully, and contains so much insight. Among my favorite parts:

I am reminded of an image that one of cousins — a woman who lost her husband to a swift and brutal cancer last year — suggested to me recently over email: that living with a terminal disease is like walking on a tightrope over an insanely scary abyss. But that living without disease is also like walking on a tightrope over an insanely scary abyss, only with some fog or cloud cover obscuring the depths a bit more — sometimes the wind blowing it off a little, sometimes a nice dense cover. (p 243)

Let’s pretend, for a moment, that this is type of blog that tells you what to buy. Because Black Friday is coming, and I have that side of me, the dyed-in-the-wool Jewish-American consumer side of me. And the holidays are coming. And it’s silly to pretend that presents don’t matter when clearly they do. My husband’s family has a lovely tradition of receiving new pajamas on Christmas Eve, so clearly it’s time to embrace the pajama present concept, even if it happens on Hanukkah and even if I’m late to the pajama party. Last Hanukkah we gave the kids tickets to see Hamilton in Chicago on the first night. They danced for joy, and that cannot be beat. Anyway, for the shoppers …

Have you discovered Thirdlove Bras yet? In a recent post I complained about bras, but I’ve also been on the lifelong hunt for the comfortable bra in all its permutations. This one is supposed to be somethng that you wear around the house, but I’m here to tell you that you can wear this to the grocery store or even to work if you are busy fighting the patriarchy, like all the awesome women I know. I have this one in a size Medium and it seems to be working when I bother to wear it.

When lounging around the house, which is where I’m supposed to be these days, I have to champion a Canadian brand. I have two Aritzia Veronika dresses. They are long plaid flannel shirts. And leggings from a local boutique that are made mostly of bamboo. The boutique is run by an Eastern European engineer who could not work as an engineer in Canada, and it is called Bela Booteek.  And if you remember the 90s, like I do, you might wear a silk slip dress underneath. Just saying.

Can we talk about being a capitalist consumer? I want brick and mortar retailers to be there. Sure, you can order whatever you want online, but can you look at and feel the merchandise? Can you make small talk with the person who picked out the merchandise and lives in the same region as you and who watched the same sunrise? Do you have any idea of what you are getting? Can you lose yourself in a shop with its colors and textures for a few minutes or an hour? Can you come out with a pair of navy and gold botanical print flats that will make nice strangers ask you where you got them when you are at an academic conference? No, no, no. Amazon, I love you sometimes, but I need to keep supporting my local retailers, who for better or worse still provide some of the most vital public space available in the little city where I live.

Also, for lounging around the house: I give you the Jockey 100% cotton pajama pant, a feature that is shockingly hard to find. In the summer, they absorb sweat. In the winter, they are cool and comfortable. If you have ridiculously sensitive skin, then you know that the difference between 100% cotton and 95% cotton is like night and day. So for continuing to manufacture 100% cotton, Yay, Jockey.  However, when the kids come home from school, I have discovered, it is best to be wearing something that passes for street clothes so that your children can count you among the living and not some twilit zombie breed, though you may be so.

Oh, and a visiting nurse told me that I need to up my napping game. Before all of this insanity hit, I thought that I had a good-enough sleep mask.  Turns out that this is the best sleep mask, a gift from a friend who does nursing shift work. According to The Historian, it kind of makes me look like a bug from outer space. Also, the podcast Sleep with Me is HILARIOUSLY soporific. And the visiting nurse also approves of my meditation practice – I recommend the Calm App as $60/year well-spent.  And if you are really a serious napper, you might consider the Ostrich Pillow. We took the mini version with us on a transAtlantic flight to Paris (see image above, courtesy of Neige), and it worked out quite nicely. What is sleep supposed to look like, anyway? It seems that I’m up for a couple of hours every night, and I’ve come to love the quiet of the house, where I can prowl around and listen to everyone else snore and peek in on my children sleeping and catch up on reading or netflixing or blogging or what have you.

I just got a dress made from this company. It’s an attempt to fulfill a lifelong dream of putting on the same dress for any occasion and feeling comfortable and confident. Is it going to work? You’re going to have to check back with me at the end of the winter on that one. A while back I read this book Women in Clothes, and it had a story about a woman who fell in love with a dress and so she had it made up in different colors and fabrics, and every day she would put on the same dress in whatever fabric/color struck her fancy and dress it up with whatever accessories lit her fire that day. And I thought, wouldn’t that just be amazing, to have one dress that is all that you want to wear every day? One dress that never itched or rode up when you sat down or made you feel overdressed or underdressed? Could one dress do all that? So I took the proceeds from my shoe sales and invested in this dress, but in black:

I’ve finally come to the realization that loose fitting dresses are 100% my jam. I don’t care if they don’t hug all the right places or instantly take 10 lbs off. How about zero hugging and room for food babies? Awesome, thanks!

It was kind of like The Uniform Project, in which a little magic pixie fashion student wore the same dress for a year to protest fashion waste and also to raise money for a girls school in South Asia somewhere. Okay, I can’t fully explain it, but trust me it made sense in 2008. And here is the magic of the “conscious dressing” movement, which seems to be designed to make life easier for the dresser. You can be like Steve Jobs or Barak Obama, and just wear the same thing every day (neutral hoodie or blue/grey suit)! Reduce decision fatigue! Focus on your life and not what you wear! Oh, this message is so seductive.

Few people I know would doubt that we have too much stuff. Over the course of my lifetime, the cost of ordinary goods like food, clothing, and home supplies has decreased, as adjusted for inflation, so that very few necessities are out of reach for the typical family. We end up with so much stuff chaotically crammed into our closets, pantries, desks, kitchen cupboards, etc, that sometimes it’s easier to just buy something new than to try to hunt down the old thing and figure out if it’s appropriate. Added to that, if it’s a piece of children’s clothing that you are looking for, there is a good chance that it will be outgrown before you find it.

I realized the magnitude of this problem over the summer when we had to move out of our kitchen in order to allow a contractor to renovate. Moving food out of the old refrigerator into the new, smaller storage fridge that we had put the basement, how many bottles of mustard and jars of hoisin sauce did we have? How many medium-sized jars got lost, crowded Condiment Purgatory in the back of the fridge? It turned out I had 3 jars of hoisin sauce and 4 of mustard, most likely because there is only one recipe that I like to make with hoisin sauce, so if I decided to make it on a whim, I didn’t remember what ingredients we had at home and found it more expedient to buy hoisin sauce on the spot in the grocery store.  There was a similar process for the many pounds of beans that turned up in the Great Kitchen Pack-Up.

The problem is many times worse at my parents’ house. I seem to remember an occasion when my brother-in-law went searching for mustard in their fridge and found 8 jars, all of which had expired. Some the mustards had expired before my parents even moved into their house, suggesting that they had moved expired mustard from the kitchen of their old home to the new. Hmmm. [If you’re curious, skip to the bottom to see how this turned into a conversation about racial identity.]

As the summer kitchen renovation approached, I decided that this is a real problem worth facing and strategizing around. For one thing, I had 3 pounds of red lentils to eat up, and I don’t even like red lentils. For another, I read that North Americans throw away almost half the food that they buy, and that if you ate all of the food that you bought you could possibly reduce global warming. I thought about my dear and creative friend Kathryn, who took on a New Years’ resolution to see how many dinners she could make in a row without shopping for ingredients. She had to be thoughtful about what she had and sometimes make substitutions, but the answer was that she was able to make many dinners without buying any new ingredients. Her experience, along with my week of eating detested red lentils, led me to wonder where we got our sense of the need to accumulate stuff in our kitchens. Why, for example, will I impulse buy some random item in the farmer’s market, thinking, “Oh, I saw a nice maitake and kabocha curry recipe the other day, maybe I’ll make that…”  Spontaneity can be exciting, or it can lead to an overabundance of Japanese produce in your food storage space. Also, I come from a long line of frugal self-deniers who would prefer to spend less money rather than more. I’m the girl who can keep squeezing toothpaste out of the same spent tube for a week or more after my husband has declared it better to just throw it out and get a new tube.

Moving out of our kitchen I discovered drawers full of partially-used flour, pasta, rice, beans, dried fruit, nuts…all things I love and need but was not using.  Our culture makes it so easy to accumulate and acquire new things and harder to use and enjoy what we have. To use up your beans you need to find the recipe that you like and the time to make them. And our lives are not set up to be generous with time, at least not mine. When I stop and think about it, this accumulation of stuff is a symptom of the striving lifestyle of late capitalism.  We strive to be successful parents, professionals, partners, friends, human beings, etc. So my kids eat homemade meals, The Historian and I read academic journals in our spare time, and I exercise and eat kale every day; but all of that does not make for a fulfilling life. It does not even keep us safe from cancer, does it?

The decision to do a modest renovation of our little galley kitchen was a commitment to having a space where we could enjoy spending time preparing the food that we eat.  After a few months of chaos, we have an awesome kitchen. Having packed everything up, we have attempted to unpack only what we need are are working on culling the rest. I discovered duplicate spices and gave them to people who said they could use them. We donated some usable food to the local Food Bank. We ate stuff up. For the sake of streamlined design, we got a slightly smaller fridge for the new kitchen and now anything that gets used less than once a week is stored in the basement extra fridge. I’m making a big effort to only buy what we need, and so now we can actually see the back of the fridge, cabinets, etc.

This is not just about our kitchen, and it’s not just about stuff. It’s about the way that we understand what it means to live our values. I’ve had some time to dip my toe into the literature about mindfulness and minimalist lifestyles, starting with this great post.  It turns out that I can’t let The Market decide what is important to me, these  are decisions only I can make.

• I love to spend time in the kitchen, experiment with recipes, see ingredients transform into something new.  I love to cook for myself and also for family and friends.
• Nothing beats spending time with the people I love. A relaxed dinner of a bowl of soup and a salad together can be as nice as an elaborate meal that I spend all day on.
• There is no winning at life if you don’t know what you value.

Okay, off now to tackle that maitake that’s sitting on my new counter.

***

Digression: Because everything is connected, this led to the following discussion around our little nuclear dinner table.

Me: You can put any of these condiments on your sausage and potatoes.

Kids (a.k.a. Neige and The Prophet) lay claim to hot sauce, mustard, relish, or whatever catches their fancy.

Me: You know, when I was growing up, we never put condiments on the table. We had a refrigerator full of mustard that we never used. Is that because it was the ’80s, or because I’m descended from hoarders? Or is it an ethnic thing?

Husband/The Historian: We always had condiments. But that’s because we’re WASPS. British food doesn’t traditionally have any flavor on its own, so we need condiments.

Me: Do you guys know that you’re White, or WASP?

N: I never thought of that before, I know that I’m Jewish, but most people don’t know that I’m 1/4 Japanese and they’re surprised to hear it.

H: Yup, you’re Anglo Saxon and Scottish, too, whether you want to be or not. That’s the thing about privilege. It’s not something you get to have or not. Also, when people assume that you are White, then you get treated as White, whether you want that or not….

It seems that my little Canadian-American-Jewish-Japanese-WASP progeny were blissfully unaware that these are labels that get stuck on them whether they want them or not. It’s not enough to think that you are leading by example, you have to have the actual discussions.

 

When I was newly diagnosed with breast cancer, many people who have been through this wringer said to me, “Welcome to the club that you never wanted to join.” And in doing so, they may as well have said, “We’re here for you; we see you; we understand your pain and fear and anxiety.” But the truth is that there is another club within the breast cancer club that people don’t like to talk about or even acknowledge, and that is the club that I am in, the club for those diagnosed with Metastatic Breast Cancer (MBC), or Stage IV Breast Cancer. MBC refers to breast cancer that has spread beyond the breast and lymph nodes, it is the only form of breast cancer that is life-threatening, and it is incurable. It bears repeating: Metastatic Breast Cancer is the only form of breast cancer that is life-threatening. A docile tumor can stay in the breast for your entire life and not cause you trouble, but the aggressive, cagey tumors that spread to bones, lung, liver, or brain are the ones that kill.

It came out of the blue; I didn’t even know that you could be diagnosed with Stage IV cancer with no prior history of breast cancer.  What’s more, I had no family history with the disease, and generally had no lifestyle or risk factors to mark me as someone who should be on guard against breast cancer. The diagnosis came as a surreal joke, but the truth is that the majority of those diagnosed with breast cancer have no known risk factors. So when the Breast Cancer Awareness Month campaigns rolled around last October, with its ubiquitous advertisements and pink ribbons, I was feeling raw and shell-shocked in the way that you do for the first 1 or 60 months after diagnosis.

That’s when I encountered the bus. I traveled the same route as the bus when I picked my kids up from school each day. Most days in October I trailed behind the bus staring up at its large, pink advertisement plastered across the back that went something like, “Even young women can get breast cancer. Check your breasts regularly. Early detection = cure.” Screw you, bus.

I had checked my breasts regularly, had even found the lumps that would be diagnosed malignant, and had found them early enough that in an initial consultation, a surgeon told me that my chances of surviving were very good. That was before the CT scan that found suspicious lesions in my liver, lesions that would prove to be malignant, that would signal that my cancer was no longer considered curable. I realized with a sense of shame that I would never be a “survivor” in the sense that I would go through the breast cancer experience and come out on the other side.

For the 6-10% of women whose breast cancer is metastatic at initial diagnosis, there is no hope of getting through the experience, just of persisting within it. It doesn’t matter if you find it “early,” as some breast cancers are so aggressive that they metastasize before they are detectable.  Some would claim that you can be a “survivor” while living with breast cancer, but that seems disingenuous to me, as our doctors tell us that we will never have a life after cancer. Women who have been diagnosed and treated for breast cancer also face a risk of developing MBC. In total, about 30% of breast cancer patients will develop MBC.

Given that MBC is the most dangerous form of breast cancer, you would think that there would be a lot of research on it, wouldn’t you? You would be wrong. According the Metastatic Breast Cancer Network, only 7% of breast cancer funding has gone to studying MBC. The Global Status of Advanced/Metastatic Breast Cancer’s 2016 report found that, similarly, over the past decade only 7% of scientific papers on breast cancer related specifically to MBC.  Furthermore, while survival rates for early stage breast cancer have made some gains in the past decade, survival rates for MBC patients have remained about the same. The upshot is that while breast cancer itself has a fairly high profile–judging by the number of pink ribbons I see, as well as the number of fund-raising emails I get every October—MBC is both under-funded and under-studied.

How has this happened? For years we embraced the idea that increased screening, vigilance, and early treatment of all types of cancers would result in better survival for the population overall. As a result, doctors found and treated more cancers, including cancers that did not need to be treated. More recently, it is becoming apparent that we need to understand why and how cancer metastasizes if we are to develop effective treatments for all patients.

And there’s a darker side to this problem. We need to ask the question, is it possible that early stage breast cancer gets more research funding because it affects a larger population, thus offering a larger market for new drugs? Or is it simply a more effective marketing tool, to tell potential donors that by giving money to efforts to detect and treat breast cancer early, they can save lives? The book Pink Ribbons, Inc. by Samantha King argues that breast cancer fundraising campaigns have been predicated on providing an upbeat message promising survival for those who comply with breast cancer screening. This strategy has instituted a “tyranny of cheerfulness” over breast cancer patients, especially during the annual Pinktober awareness campaigns. There was little room in this narrative to talk about MBC.

The “early detection = cure” message is a cruel joke to members of the MBC community. How many nights did I lie awake wondering, if I had just found the suspicious lumps 3 or 4 months earlier, might I, then, be a “survivor”? That pink bus seemed to be suggesting that if I had just fulfilled my personal responsibilities…. Last October, one blogger, a woman who is at high risk of breast cancer due to carrying the BRCA1 gene, had the audacity to write, “My doctor told me that women who follow the rules don’t die from breast cancer.” Such statements put the blame squarely on patients for the spread of their cancer. To which I say, screw you and the bus that you rode in on.

It’s not fair to blame patients for their illness, especially when what is needed is more research and more focus on MBC. If you are receiving fundraising messages for Breast Cancer Awareness month, please ask yourself the questions: Is this fundraiser going to benefit all breast cancer patients or just those in the early stages of the disease? Is the message focused on early detection and treatment, or is it focused on responding to the needs of all, including the most imperiled? If you would like to donate to support breast cancer research, please consider giving to an organization that recognizes the need for more research and support for MBC patients.

On October 1, I took part in my local Run for the Cure event to mark Breast Cancer Awareness Month. Given my skepticism towards these efforts, I was not sure what to expect. But, as the old feminist adage goes, Sisterhood Is Powerful. Gathering with so many people of all ages marking their personal losses from breast cancer as well as their collective hope for a cure made me feel supported. Indeed, flawed as this movement may be, it has gone a long way towards making breast cancer a popular cause. There was a time when people would not even say the word “cancer,” and now I can be celebrated for living with it. (“You’re amazing!” one young volunteer enthused when I went to pick up my free pink t-shirt.) More importantly, as I walked the course with friends who have been through the breast cancer experience, it opened up a space for us to have conversations that would otherwise feel out of place. We talked about facing fear, the places where we find strength, and dealing with the limits of scientific knowledge.

This year that bus is back with a large pink ad, proclaiming, “Breast Cancer . . . not just a disease of older women,” next to a photograph of a vibrant young women, telling us she “was only 24 when she lost her life to breast cancer.” This acknowledgement that women die from breast cancer suggests that the message is moving in the right direction. Over the past year, I have learned that there is no shame in having MBC, and by telling my story I can change the collective understanding of breast cancer to include those of us living with the disease, not surviving.