This is the day my hair should start to fall out, so last night, Sam took to it with the razor.
I have to say, I feel again like I did when I first cut it into the (longer) short cut- like the world was conspiring to keep this gigantic secret from me, this secret that was practically bursting at the seams to scream “REALLY SHORT HAIR IS AWESOME.”
My hair isn’t falling out yet, though I’m sure it will soon, and then, I will be very happy I’ve got it in a buzz cut. Turns out, I have stubborn, thick cowlicks at the back of my head and at my temples. Suddenly, I can see my eyes and the shape of my face better. Weird.
And that is that. I liked the other short hair cut a LOT. I like this one also, a LOT.
Tomorrow I will have the second chemo infusion. Then I probably will be horribly exhausted, again, for a few days, before things get back to the normal swing of things. For now folks, I’ll just enjoy this buzz cut, and be grateful I don’t have a total block head. The actual shape of my head is to be discovered.
It’s Christmas! We are cooking and opening gifts and listening to Sam’s selection of Christmas classical. The kitties are eating the turkey liver and the lights on the tree are twinkling and the friends will come knocking this evening. Yoga is in few- yes, we cooked in the morning so we could go to yoga this afternoon. Awesome.
I’ve been considering the various implications of all kinds of adjuvant- read, in addition to the traditional slash/burn/kill of chemo/surgery/radiation- treatment. There is a homeopath about an hour from where I live who has a whole cancer care centre. While initially I thought I’d go to Inspire Health, which is a Vancouver-based integrative care centre, it seemed like this particular homeopath, who, in the words of another homeopath, “has treatments available nowhere else in Canada.” Sounds good, right?
I have to say, I was convinced. Entirely. My family was going to pay, though I considered asking my friends to fund, partially, via the oh-so-popular breast cancer fundraising that so many of my young breast cancer buddies are relying on to pay for American treatment. It sounded really important, entirely critical, to hear the naturopath describe the importance of heating the breast area on a water bed before and after chemo, and to listen to him describe the endless benefits of IV vitamin C, even though I’ve been told again and again not to take any vitamin C while on chemo. I took his diet recommendations seriously, strictly controlling my diet: no flour, no sugar, no estrogen, no chemicals, no non-organics, not too much fat. I swallowed his vitamins, embracing his philosophy entirely. After all, I have breast cancer: I might as well do everything I can and then some, and try all the cures and remedies and magic potions, right? Unless, of course, it hurts.
And hurt is exactly what it could do, I learned, when my oncologist had a really big, forceful opinion about this place and this naturopathic doctor, and his vitamin C and his water beds and why on earth I’d fork over so much $ for something without a lot of evidence behind it, and something that, in her opinion, would actually be harmful. His studies, the ones he showed me to get me entirely on board? The oncologist, Dr. G., raised her eyebrows and her voice at their shady methodological approaches, no end points and not large enough sample sizes! In the end, convinced as I was by this naturopath, I can’t go ahead unless Dr. G. gives the thumbs up. She referred me to another naturopath, one she likes and trusts and who’s work is more reliable. I’ll see that person, soon. I really think naturopathic care is critical and important, but I’m not about to make moves that clash with my oncologists’ ideas.
I do think the naturopath had some important ideas about diet, but also, I think those ideas are generally good ones for people living in the world- like no-flour-and-no-sugar, and organic everything, especially meats and dairy. Well, OK. I mean whole grains are less processed, and too much sugar makes me very shaky when I balance in yoga, and I’m all for eating as much local and organic as possible. However, as a wise someone reminded me, if cancer were caused by diet or by sugar/flour/non-organic consumption, or even by estrogen consumption, cancer would be distributed across the world’s populations wildly different than it actually is distributed. So we know eating doesn’t cause- or cure- cancer. And also, we know bodies generally feel better when we eat less crap. Likewise, the environment feels better when the carbon footprint is smaller, when food is grown locally, when fewer fields are sprayed with pesticides.
I hope your Christmas was as lovely as ours. We cooked and ate and drank (organic) wine and couldn’t decide if we liked the (sugar-free!) lemon ice cream I made. We watched our little orange kitten race around the house like he was full of redbull and the boys played music and sang and the lights on the Christmas tree twinkled and sparkled. To you and yours, I hope it was magical.
I am totally exhausted. And totally incensed at the pack of pathology reports I requested- and received- from BC Cancer. Certainly, the doctors are awesome. Their reports are complete and full and attentive. I am receiving excellent care.
But WTF, screening technologies. “In particular, the left breast is unremarkable.” “Not seen on mammogram.” “Most likely a benign fibroadenoma.” “Negative mammogram.” “On physical examination, there was no specific discernible palpable mass.” “Mammogram unremarkable.” “Invasive cancer not seen on mammogram.” “She looks well.” “No suspicious enhancing lesion identified in either breast.” “Benign appearing mass.”
So, the incense is twofold. On the one hand, why did my Left Breast cells start morphing, when everyone else’s Left Breast Cells are just as exposed to toxins and plastics and pesticides as mine, at least on a daily basis? But mostly, why all the furor around early detection mammograms? Why’s everyone running around telling me they are going to get mammograms now that I have breast cancer? BECAUSE I HAD A MAMMOGRAM. A NEGATIVE MAMMOGRAM. That’s right. It could have gone like this: feel lump, have mammogram, negative results, go home fine, end up with metastatic breast cancer in a few years, die before 40. That is what would have happened, if I had not insisted on more investigation, even though, as one doc put it, “I’m not concerned.” So don’t go parading around the world like a mammogram is going to save you, or could have saved me, or might save any person in particular, especially if you are under 40. Clearly, early detection mammogram screening is not what is going to get us out of this mess. We need something radically more political.
The only things that got me here was insisting a mammogram was not enough. Which, when you read this section of one oncology report, you, too, will understand why a screening detection system (ie, MAMMOGRAM) that doesn’t work and that isn’t even used to screen young women seems outrageously ridiculous:
“…Given Chelsey’s age and ER positivity, this represents a high risk breast cancer and studies suggest that ER positive breast cancer in young patients represents a unique, more aggressive disease entity compared to their older counterparts. Her risk of recurrence, regardless of axillary node involvement, is high. She will require adjuvant chemotherapy, horomonal therapy with tamoxifen for 10 years…”
It’s an interesting dynamic, because most people think that I know I have breast cancer now- at this young age- because of something like “early detection.” They think I’m a mammogram machine, knowing I already have breast cancer. It is totally random I found that lump, for the record, and multiple doctors said it was not a palpable lump, that that was how normal breast tissue feels. So, I’m never really quite sure what to say to the smile that accompanies the comment, “Well, early detection! Lucky you got it early!” Don’t let age fool you. Don’t let the early-detection-madness fool you. Breast cancer is worse in younger women, like most cancers. Most younger women are diagnosed with more extensive disease than I have, and with the same aggressive markers I have.
If you haven’t checked it out already, please watch PINK RIBBONS, INC.
Tonight, I saw Hunger Games. There are so many parallels. And that post will come, as soon as I grade six more student portfolios from this semesters’ class….
When I got to the intersection of Oak and 16th today, I watched my dear bridesmaid A (since I wrote that on a chart as her relation to me, its now official) flip a U turn in her itty bitty Smartcar. You could practically do a u-turn on the sidewalk in that thing, its so tiny! It was fun to ride to chemo in the bitty-bitty-plastic-toy-car. I’ve always wanted to see what that was like, and today I got my chance. A came with me to this chemo because Sammy had some important work stuff happening, and the poor guy has already re-arranged his schedule probably a hundred times to come with me to things. I’m going to have to line up some friends to come to these exceedingly boring appointments with me.
After we rode the elevator up to the 6th floor and checked in, we noticed the absolutely ridiculous selection of books. I absolutely love trashy novels, but these were even beyond my typical trashy airport fare. One even included a title something like “The Handbook for Handling His Lordship: Scandalous Brides” and the picture on the cover was of a woman who’s blouse was slinking down her shoulders. This book would probably give me high blood pressure. I mean seriously. I should have photographed this awesomeness so you too could appreciate the scandalous and trashy reading the cancer agency is providing for patients. Then again, all these old people probably need a little trashy romantic novel porn with their chemo.
The nurse came and got me, and settled me in a big chair. She connected my port, which hurt because its still bruised! Next time I’m bringing some numbing cream to make the needle prick not something I have to worry about. And then we waited. The nurse has to specially administer the first cocktail, which is bright red, from a syringe into my port with the saline solution. I couldn’t feel anything beyond the initial poke into my port. After that, I switch to the second drug, which is 45 minutes, and then I’m done with everything. It’s pretty easy. There’s warm blankets and ginger-ale and cookies. And its hella boring.
An older woman getting chemo in the same room told me not to shave my head because who knows what will happen, but I’m doing it anyway. In the next few days, I’m doing it, well, really, either my friend C is doing it, or Sammy gets to do the honors. If I wait a few more days, I get to rock this short haircut I am in love with a little longer, and as an added bonus, if I decide to go to the department holiday thing tomorrow evening there won’t be too many questions about why I shaved my head, just crowing over how awesome short hair is, which I can totally handle. The nurse said it will likely start falling out right around my second chemo treatment, which is in two weeks, and right after Christmas.
The many faces of chemo:
Oh, and guess what? I was kind of jazzed anyway this afternoon because my article on gender/media/development got published in Feminist Media Studies! This is totally awesome, mostly because I have wanted to be among these writers for like, ever. Finally, I’ve arrived. To Feminist Media Studies. And, I got “Accept as is” after the first set of revisions, which is also totally awesome. In my supervisors’ words (and lets face it, she knows everything) “This never happens. Except when it does.” And it did, to me! There is hope after all. If someone could just let the cancer know I can easily battle back with cultural theory, media studies, and feminism, that’d be great. I’m certain I can out-write this fucker. If only that was the challenge.
I feel a bit strange now. I think I’m dizzy from the steroids. Yep, I’m getting steroids. And an array of little pills the nurse described as “stop-signs” and “house-shapes” and for the ovals, “yellow footballs.” Officially weird. So, since I’m now feeling a little strange, I’ll go ahead and close this blog post and go read a trashy novel in the bathtub. Next time, I’m gonna get one of the even trashier cancer novels, maybe something about lordships and scandalous brides.
Today, I went to yoga. I’ve missed lots lately, because of various procedures, appointments, surgeries. Normally, I go daily, often five or so times a week, though cancer has seriously cut into my hot, sweaty Bikram time.
Yoga. One of my favorite teachers says, always, “Yoga means union. Yoga means unity. Yoga means you.” She is right. Yoga is warm (hot, in fact! It’s Bikram!) and familiar, especially when the snow is falling on Vancouver and I am asked to repeat my name and birthday four hundred million times to four hundred million medical professionals when I walk into a hospital, which is like, everyday. The poses are always the same, my body knows them. I know what is coming and at the same time, I haven’t a clue, but even in the not-knowing how it will go any particular day, yogeando, as we call it in our house, is the most awesome, mind-clearing, body-feel good, instant-skin-refreshing, experience. I love.
Today, I did something I never do. I left. Before the class was over. It’s totally taboo to leave before the 90 minutes are up. But tonight, my port incision pulsed. I can’t lay on my belly. My lymph node incision really began to ache. I was tired. I felt pulled to writing my diss conclusion, hanging in the balance at home.
And so, after the long halfway break and then the first posture, when everyone flipped to their bellies and it became apparent my seriously marked up chest- two port incisions and a port-bump, a neck biopsy bruise, a lumpectomy scar, a giant blue blotch of dye from the node surgery, and a node removal scar- was not going to have any of the laying-on-the-belly savasana, I decided I’d had enough. I relaxed for a bit, drank the rest of my water, put my rings back on, and tip-toed out.
“Yoga means union. Yoga means unity. Yoga means you.”
Sometimes, yoga means listening to the body, responding. Listening to the scars screaming for cold air, even as the muscles need to stay so badly. Bringing the body back into balance with itself, re-channeling energy and being kind to the broken body parts, the parts marked so barbarically by modern medicine.
Slash/burn/kill. This is cancers’ treatment. Unable to distinguish between good and bad, vibrant and malicious, nurturing and abnormal, the slash/kill/burn approach throws unity, union, you out with the wind because there is not another choice. There is not enough knowledge. There is not a way to distinguish, to pick apart, to know what is good, vibrant, nurturing and what cells will soon morph, becoming bad, malicious, abnormal. Yoga pleads, in contrast, for unity, union, you. For centering in unknowing, for salty sweat in eyes and for locked knees and for yearning for clean, fresh water. For warm spaces, for familiar movement, for favorite teachers. For back stretches, for flexible shoulders, for touching the head to the knee. For imagining a posture is a theorist, and rocking it. For yoga-breathing in the midst of haphazard writing. For a cell phone left in the car, unanswerable. For a deep breath and a comfortable familiarity and a sweet release.
Tonight, I am thankful to have yoga. It’s bring a friend for free month. What Vancouverites want to come with me? Email me!
Hair is a feminist issue. That’s a no-brainer. There are fiery feminist discussions over all kinds of body hair. Today though, today for me it’s just about the hair that grows atop my head.
It was long. And wavy-ish. Curly-ish. Frizzy-ish.
Hair made me distinguishable: I am a redhead. I identify with other redheads, but sometimes if there’s too many redheads around, I’m like— dude, what? I’m supposed to be unique and special! There’s lots of my heroes who are or who were redheads, like Eve Sedgwick and Pippi Longstocking.
My hair has been short before, but not too short. More like, pixie-short. Today I had ten inches cut off, and I’ll bring them to this woman in Vancouver who makes free wigs for kids with cancer.
Long, strawberry blonde hair is part of how I see myself. I love piling it on top of my head when I am working, and the bangs have certainly been a hair adventure. Long hair is part of what screams girly about me. This time, I was shooting for it to get down to my butt. Alas, no more. Of course, long hair isn’t all peachy. It gets in the way at yoga, it takes a lot of expensive shampoo to wash, and it frizzes out like you wouldn’t imagine.
The plan is to shave my head shortly, before I begin chemo. I just don’t want to deal with hair falling out. It sounds simply horrendous to me, to go around the house, hairs floating off your head to the ground. I know it isn’t exactly like that, but its close enough. More and more hair coming out each time you run your fingers through your hair; more and more strands on the pillow in the morning; bigger, thicker clumps gathering around the shower drain. No thanks. I’ll go bald on my own terms.
I’ve thought about this a fair amount. Women with shaved heads basically always look like bad-asses. They don’t even have to do anything, except be in the world with a shaved head, and automatically they are read as bad-ass. This afternoon, I said to my bestie, “Women with shaved heads—” and she finished my sentence, “–are so intimidating. Scary. Like don’t mess with them” I think the woman with shaved head equals total bad-ass is about women saying ‘Fuck You’ to the patriarchy, as in, who cares about my long tresses, don’t mess with me. It’s being aggressive, being a bad-ass, and you all know how I love aggressive. Its kind of awesome.
There’s really not a whole wide array of choices here for me to pick from, in terms of how I’m going to respond to this. People keep saying things like “you’re so brave,” in its various iterations, and yet— I have not done anything, folks. In fact, I haven’t even survived anything except more biopsies than anyone should ever have and some other random, weird procedures. I didn’t go running into a burning building to save someone, or make a speech to thousands or foster world peace, or lift a car off someone pinned underneath, or bunji-jump off a cliff. I just went to the doctor one day, and came out the other side with breast cancer. So, given that there are not endless choices for how to handle this, bad-ass with a shaved head seems like a good-enough bet, especially so because I don’t have to do anything to be read as a bad-ass once I have a shaved head, I just have to take my hat off. I could stand being treated like a bad-ass. It certainly feels more accurate than “brave.”
And if I don’t want to be the badass girl with a shaved head, I can always wear this long, perfectly curled dark red wig. Because you know, a girl needs perfectly curled hair at least sometime in life. Chemo seems like a good time. My real hair will never curl so nicely.
So, I’ve taken another step towards badass/intimidating/awesome on the hair spectrum today. This morning I called and made an appointment at a salon on Main. I knew it was the right place when I walked in, my hair matted under a beanie because I haven’t been able to show-show (as in, shower) since I had my Epic Day of Small Surgeries on Friday. I can’t yet get the port incision wet. Yah, that little collarbone incision is the top incision from the port. I have another, large one and a bump under which a plastic port sits a few inches below. Bionic woman, I am. Since my veins roll and retreat deep into my arms each time they try to give me an IV or draw blood, this thing is going to save us a lot of heartache. It hurt like crazy after they put it in, but it’s getting better little by little.
So, the hair is asymetrical. It’s fun. I think it will be easy to take care of, for the few days I will have it. The girl who cut is was just lovely- telling me about how her chemo clients come back with hair that is super curly. and giving me tips about short hair and buzz cuts and bald heads. I have no idea how it will hold up in yoga!
So, here we go. I start chemo in five days, and before then, I’ll shave this thing. Well, my friend C, who has a bad-ass haircut herself, will shave it. I’m slightly concerned I may have a blockhead, because I recall my brother and father having big square heads when they shaved them in the summertime. I’ve been assured by two hair professionals- the wig-maker and today’s hairdresser, that it seems I have an exceptionally round head. Which is good.
Speaking of hair, there’s a few other things that happened with hair this week. For starters, I shaved my legs, got my hair all rolled up like they did in the 50’s, and took some fun pinups! I mean, a girl must do something when she’s gonna chop her long red locks and start chemo and march forward toward mastectomy. We did all kinds of outfits, but here’s an (unedited) preview.
Things are so odd in cancerland. Every time we get more information, or I take a phone message, or I look at my body, or I make a decision, things get weirder. I am making decisions I didn’t even know were possible to consider a month ago. I am interfacing with people, places, and spaces that are entirely foreign. And it is profoundly strange.
We got the results from my node surgery: negative! This is very good. I do still have a node in my neck that is slightly swollen, so I get that biopsied Friday, but otherwise, the nodes are clear. Everyone is very invested in knowing what stage my cancer is- everyone asks this, all the time, urging me to discuss it with my doctors and to have a clear idea of stage. I think people might not realize that stage is a bit arbitrary– someone decides what stage the cancer is. It is about size, node status, and grade. Mine is large, my nodes (look) clear, and its grade 3, which means it’s aggressive and fast-growing. The cancer is stage 2. The thing, though is that who knows if that means anything. Maybe it means a percent here or there, but actually, does it matter? In my case, who knows. We don’t yet know how nasty the cancer that took up residence in my body is, we don’t know if it will recur or when it could recur. Stage is knowledge people I care about crave, and I understand the relief at the early-stage diagnosis, and also, it feels entirely arbitrary. It feels like little more than an assurance cast into my world by doctors answering my questions. For such a sought-after piece of information, the doctors give it little time and attention. Just a tiny piece of knowledge, produced in our interactions, in my attempt to understand more and their inability to communicate years of much more finely tuned complexity to me in such a short period of time. Likewise, I have passed on this not-very-informative piece of information, and people grasp and run with the wind like the fact that the cancer is stage 2 matters more than the world itself.
Hair matters. My dissertation matters. Who can be a surrogate matters. My sweet little kitten matters. What we’re having for dinner matters. I’m just not so sure percentages actually matter.
Speaking of what matters, today Jose Esteban Munoz died. Munoz was a rock-star academic who’s worked seriously informed scholarship on race, gender, sexuality, temporality. I love his work on utopia, and his insistence that something more, something beyond can exist; I love his work on queerness as the insistence that something not yet materialized can inform and become the world in ways we do not yet know. He just died. I don’t know why, despite multiple internet searches. Simply, an academic in his late forties, he stopped existing yesterday. There was no warning. No one to tell him his body was in any kind of “stage,” or that he had a such-and-such percentage of five year survival, or that if he integrated milk thistle and lemon water into his diet, he’d have a better shot. Nope, he just woke up one morning, and that was all there was left.
What would he have done differently if he had known? Can you think backwards like that, obsessing over the past, over moments and choices and possibilities before they became decisions? I obsess sometimes, over backwards thinking. What if? If this, then that? As any good poststucturalist scholar knows, I am well-aware that this sort of correlation and causation is impossible. And yet, I cannot stop wondering, thinking, meandering back into the recesses of time, hoping for a glimpse at what never was, wondering if what never was included breast cancer, now.
Thinking backwards. There is a possibility my Aunt Sara had breast cancer in her early 30s. Why, I wonder, did I not know this? My grandmother, Sara’s mother, died of melanoma when she was not very old at all- in her early 50s. Melanoma and breast cancer are loosely correlated, with melanoma being related to the gene mutation that is linked to breast cancer. Three generations. Three women. We’ll know with the results of the gene test, if this is a horrendous coincidence or a family mutation.
Family got in the way. No one talks to Sara. They say she’s manipulative and mean-spirited and obsessed with wealth. It may be true, partially true, sometimes true, if of course, we pause for a moment to ascribe to the idea that there could ever be any kind of truth, however multiple, fractured, or shiftless. Truth doesn’t seem to be a good measure here, mostly because I have no truth of my own to compare- I have relatively few memories of Sara.
I remember once, when I drew Aunt Sara in a family Christmas picture and presented it at dinner, and she asked why she was so much bigger in the drawing than everyone else. My seven year old self realized in a split second that though she was obese, it was wrong I had drawn her as such. Mortified, I said she was pregnant and that I wanted a cousin. I remember another time when she took my brother and me to F.A.O. Shwartz in San Francisco, and she bought us stuffed giraffes and tool belts. In retrospect, maybe she was trying to break the gender binary, however I was utterly confused about what to do with a tool belt. She often told me how much I look like my grandmother; her Oakland hills home at white carpets and a spiral staircase I loved; once, she made garlic mashed potatoes and I found a hair in them. And that is all I can tell you about Sara. The rest of what I know of this blonde woman, who married a man as old as my grandfather and lived in the Oakland hills is hearsay. Drugs, stealing money, sex, the fast life. A house in Tahoe, scandals, manipulations, tantrums. The list is long. I’m sure she is probably nuts, but really? Her brothers aren’t sure if she had breast cancer in her thirties?
What is knowing? Did they not want to know? Is knowing too hard to know, sometimes? Knowledge is produced in between people, in relationships and events and moments and practices and beliefs. Families make knowledge over dinner, designating what is important enough to think about and what should be left aside; Sara made knowledge with me when she asked about my larger drawing of her body, and I knew, immediately, to obscure that I had meant fat when I drew her. I learned fat was not OK. And did she mean to teach me that? No. But I learned. We shared knowledge about bodies, as we sat at that family dinner. I am most certain I am the only participant in this knowledge-sharing moment that remembers.
Knowledge is fleeting and sensual and intimate, and we can forget knowing. It happens in the small moments, like when I press the doctor for a stage, a prognosis; like when everyone else digests that piece of information through their pop-culture-cancer-lens. When knowledge is traumatic, sometimes we forget it. We block trauma in ways that are healthy and life-giving: some things are too hard to remember. And yet, it seems unethical to block knowledge, and the ripples are far and wide. It feels entirely wild that I could have an aunt who maybe had cancer in the 90s and that my family could have not known. It seems violent.
Knowing about cancer is violent for some people. Having cancer is even more violent. How could they not know? When we block cancer-knowledge like we do trauma, we feed into a system sticky with environmental trauma, plastics, and toxins, and their violent interaction with our genes and our cells and our lives. And a sister! How could they not know?
This world is so strange. Everything seems like fun-mirrors. Family, genes, stages. At every turn, something weirder happens. It keeps getting stranger.
We had an awesome thanksgiving. A short summary: Megs, my BFF from home came, we lit the turkey on fire, and my friend A hugged me so hard my earring cracked. Earring-crushing hugs, best friends, and flaming turkeys, these things make for the best thanksgiving.
Thanksgiving is less of a big deal here than in “America.” Nevertheless, I con all my Canadian friends into celebrating every year, which is a feat, since in my opinion, so much of Canadian identity is defined by being “not American,” and there is really nothing as American as turkey and pumpkin pie on American Thanksgiving. The Canadians always ask when it is, and I’m always thrown that not everyone knows it’s obviously and always the fourth Thursday of November. I have lovely Canadian friends that, for the most part, put away their disgust (hey, I harbor this disgust, too!) with the good ol’ US of A and participate in Thanksgiving a second time for me. Canadian Thanksgiving is before Halloween and you can celebrate it on whichever day over the long weekend that works best for your family, which is to me, well, blasphemy.
So, 2 days post sentinel node surgery, my BFF from home and I foraged at Jericho beach for decoration supplies and we mashed potatoes and we drank lots of cranberry mimosas. And friends from Vancouver came, and were not scared off when we lit the turkey on fire, even though the smoke made it a bit challenging to see each other across the room. It was lovely. And I am thankful. For friends, for good food, for the best hubby in the world, for people who distract me and laugh and listen and think with me, for the biggest Christmas tree we’ve ever had (purchased the day after Thanksgiving, like a true America), for sweet kittens and for the opportunity to write about something I care about. And also, of course, for quite a bit more.
Today, on this thanksgiving weekend, I’m thankful to have a cousin who has offered to be our surrogate. I knew she was thinking about it, and I was stunned at even the moment of her “I’ve been thinking about it.”
This is a girl who painted my face with red lipstick when we were little, and put my hair in side ponytails even though my father got angry because he thought it was going to make me sassy. We both turned out sassy anyway, thank goodness. This is a girl who served like a hundred tequila shots at her Thanksgiving one year and who painted my old red car like an American flag when I went away to college. This is the girl who had a “Don’t Worry be Happy” t-shirt I loved so much as a kid, and who still paints her nails in patterns and polka dots. This is the girl who understands how my family works like no one else.
There are not words that could possibly approximate the feeling of gratitude and wild compromise and insane love and care I feel towards this girl right now.
In my fridge, there are boxes and bags filled with syringes, glass capsules of powdery hormones and saline solution, alcohol rubs and these tiny little medicine mixers called Q-caps where I concoct medical solutions from different viles before injecting myself in the belly. It’s literally a science experiment, and I’m the mad scientist shaking, injecting, pinching fat, tapping bubbles out of the syringes.
You see, chemotherapy often results in decreased fertility or sterility in young women. There’s basically a black hole of research when it comes to very young women and breast cancer, particularly in terms of fertility and chemotherapy, likely because most women with breast cancer are over 45, and most of those are over 55, and so of course, most of the research dollars go to that bulk group. Most folks are not frantic about baby-making, because they’ve already made babies by the time its time to use modern medicine to kill all dividing cells in the body. Cells that make eggs are cells that divide. Cells that chemotherapy kills.
And so here we are. Sammy and I were just waiting to think about what city we’d raise our bilingual, bicultural, rockstar babies in. We were waiting ’til my medical chart would read “Dr. Chelsey” for the birth of the newborns. We had a vision, of these bilingual babies and the home we would decorate with bright colors and the pups that would roam the land around us and the professor and composer/musician jobs that would fill our bank accounts with enough money. And we were so close. Close enough to smell the soup simmering on the stove and close enough to hear the symphonies and concertos filling our home with sound and close enough to think about which publishers might turn my diss into a book and close enough to imagine the next projects in our research and musical careers.
That was life B.C.. Life Before Cancer. Then, now, there is life A.C., After Cancer.
In this life, we freeze embryos. We are part of a special program where fertility preservation is seriously subsidized— all you need to do to get affordable, nearly free IVF is get cancer.
Some people think I shouldn’t be so public about this. That getting ultrasounds of my now-swollen ovaries every 48 hours, and that injecting my belly fat with three different needles every night is private business. But you know what?
This cancer is not private business. Cancer is about plastic and toxins and the stunning realization that the careless way we treat our environment, the world, others, profit, capitalism is manifesting in my body in ways that I cannot control, manifesting in such ways that it could eat its way through those dreams, cutting away the time I needed to publish more books, to paint living room walls bright blue and vibrant red, and to cuddle in front of the fire with tea and popcorn and lovers and best friends. So it often seems like an old and tired argument, but here it seems apt. The most private, what happens inside our breasts, breasts who’s image is torn between the pornographic, the sexy, the motherly, is absolutely political, public, and practically bursting to be discussed, to be chewed over, to be written about thoughtfully, carefully, complexly. Cancer is most definitely a public issue, a political issue, and especially when it comes to breast cancer in very young women like me. Its wildly hot, insanely unjust, and urgently in need of radical, responsive attention. It’s an over-boiling zone, where environmental justice, feminist theory, cultural studies, globalization and toxins, biology and fertility are in red-hot collision, producing sparks and flames and smoke.
So yes, I think its absolutely appropriate to write about this journey through heartache, where the dreams shatter and the babies become not babies, but frozen embryos. Neither dead nor alive. Which makes them ZOMBIES. That’s right. The doctor told me today it looks like we’ll end up with about fifteen embryos from eggs in my oh-so-swollen ovaries. And those embryos will be frozen in time. Neither dead nor alive. How odd it is, to think we’ve come to a place in the world where we can stimulate ovaries to over-production, harvest them from a woman’s body like apples from a fall tree, and fertilize them with the sperm from her man lover, and then hold them indefinitely, suspended in time and in ice, until there is a uterus, probably not mine, that they can call home for long enough to grow and become human, alive, long enough for them to grow eyes and ears and hair and a pair of lungs. Inside someone who is not me.
Not me, because I will most likely be on tamoxifen for 5-10 years. 10 years! We know young women with estrogen positive breast cancer do better when they stay on tamoxifen, which inhibits estrogen production, for ten years, instead of the standard five. Some young women go off this drug to get pregnant, and there are very mixed reviews about this practice. On can find studies arguing its better to get pregnant and that pregnancy decreases the rate of local and distant recurrence in young women, and one can find studies arguing the local and distance recurrence rate skyrockets with pregnancy. Recurrence is a really big deal, because its mostly the second time women get breast cancer, in the form of a recurrence, that they die. Once breast cancer spreads beyond the breast and lymph nodes to the bones, liver, lungs, or brain, where breast cancer cells like to set up shop, there is no cure.
So, I hope someday our zombie babies, the frozen embryos to be made from my swollen ovaries, will take up residence in the uterus of someone I love. It’s really so much to ask, for someone to give up nine months of their lives, hold a baby in their bellies, and then hand us the baby upon birth. We are fortunate that maybe a sister or two, and maybe a friend might be able to donate their warm and healthy wombs. But who knows if that will work out, with visa laws and flight-bound-embryos… that said, we’ve been through enough visa and border trials that if anyone can make a zombie baby into a real baby across borders and with visas, its us.
I know lots of people struggle with fertility: that is evidenced in the swanky service-for-pay offices the fertility doctor inhabits, and that it’s not easy for anyone to have swollen embryos. Many people have reminded me of this, and yet this, I think, is distinctly different. It’s not the ups and downs of living from a human body, the necessary but frustrating tribulations of human imperfection. It’s cancer, it’s deadly, it’s caused by human malfunction, human abuse, and environmental trauma. So I feel some solidarity with the women crowding into the fertility office, hoping to make a baby and throwing all those carefully socked away funds at their baby-dreams. And also, I feel nothing like them, I feel entirely out of place.
Lots of folks deal with devastating illnesses, infertility, disabilities, challenges. I don’t think its worth comparing. I know it’s entirely unhelpful to think about who has it “worse,” and what “better” is for different bodies. What I know certainly, though is this. I am insanely, imperfectly, horribly jealous of everyone without cancer. That feeling is ugly, especially in the face of “cancer is a gift” and that feeling is rough on the ears, especially when folks need me to affirm I will be OK. Jealousy is harsher than sadness, anger, and spite, and it speaks to the kind of relationality that allows us to think about who we are, we were, what we might become. Jealousy makes painfully clear that we are all implicated here, knotted together in a web of toxic, plastic capitalism. Jealousy is the feeling of capitalism.
I have no idea if I’ll be OK. And what is OK, after all? Is OK just alive? Is OK a PhD? Is OK fear of recurrence? Is OK avoiding terror of cancer in the other breast with a bilateral mastectomy even though the medical community assures me it won’t improve my survival? Is OK a baby in someone elses’ belly? Is OK a house with colorful walls? Is OK breast cancer in my bones and a prognosis? What percent is OK? Is OK having a few breast cancer buddies who get it? Is OK when my BFF comes to visit and I wish she’d never leave? What prognosis is OK? How is OK a percent chance at five-year survival?
So for now, zombie babies. We’re making them. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is. I won’t be pregnant in the spring, I’ll be on chemotherapy. It’s weird as fuck. I won’t be pregnant in the spring, I’ll be on chemotherapy. And I have no idea what OK is.