Let’s Be Real.

OK, let’s be real. I haven’t been real about this surrogacy thing, on the blog. I’ve been real about it at the Young Adult group at Callanish, and I’ve been real with close friends on the odd walk around the sea wall or on those occasions when you’re riding your bike by your friend’s house late at night, and they happen to be home, and you have a spontaneous curb side chat and never take off your helmet. But we had to break the news before I was real. News is broken. We all know its about to be awesome in our house, with two tiny baby girls to cover in kisses. So. Let’s be real.

Two weeks ago, I sat in the waiting room. I waited. While a technician did the ultrasound of my babies on our surrogate. It felt wrong to be in the waiting room. “But that’s what the fathers do,” the secretary explained. Fuck that. I’m not the father. But I waited quietly. Forever, it seemed. Far enough that I might have been miles away, as an old Brit took measurements of my babies in someone else’s belly. Because of course, the secretary explained again, “that’s what the fathers do.” Newsflash. I’m not a father. And it does make me wonder, what about the partners that are also mothers? I’m not the father, I’m the mother. And those are my babies. And I should have been there, for the entire ultrasound. I don’t give a single sh*t about the technician doing their job, taking measurements, not needing other people in the room. They’re my babies. Mine. And I should not have been in the waiting room.

I couldn’t pull it together that day to advocate, but I knew it wasn’t right. I could feel it in the pit of my belly. It felt horribly wrong, horribly unreal, horribly impossible to wait in the waiting room while someone else had an ultrasound that to check the measurements of my babies. I just couldn’t articulate it until tonight, until someone sat across from me in that sacred space that is Callanish, and shared exactly this experience, shared exactly this anger, shared exactly this alienation, this invisibility, this impossibility. You bet I’ll be calling that facility tomorrow, to help them learn from this experience. Object lesson, for the hospital staff. But that feeling in the pit of my stomach, the one that burns with the sensation of something being terribly out of place? That feeling isn’t only one that lurks during ultrasounds. That feeling is one that has pervaded the last twenty weeks. Knowing I can pour myself a glass of wine without any concern for my babies’ developing brains and bodies is absolutely unnerving. Heartwrenching. Full of ache. It cannot feel right, because it isn’t right. They should be inside my body. My breasts should be intact. My ovaries should be functional. My body should be their safe place for growth.

That woman tonight, that other woman who has two girls by surrogacy, both born post-cancer? “I have always trusted my gut,” she explained, “but with the surrogacy, I couldn’t. There was never a gut-feeling that this was OK, because fundamentally, it wasn’t.” Of course not. How can your body send you a feeling of OK, when what should be OK in your body is so not OK it’s not in your body? Having my babies inside someone else’s body cannot make me feel, ever, OK. It can only make me feel like my babies should be inside my body, and they are not. That ache, that horribly unsettling feeling? I’m pretty certain it’s here to stay, until our little girls are in my arms, until they are mine to take care, just as they should be right now.

Right now, it seems like everyone is pregnant. Friends all around me have bellies busting through their t-shirts. They have ultra-sounds and they leave their husbands and wives in the waiting room until the technician is done with her “job” and ready to play show and tell. They order sprite instead of champagne. Sometimes they tell me how hard their pregnancies are. How awful they feel. I want to receive their words with care and comfort. I think I can hold the space with love and listening. I hope I do. I certainly try. But you know what really gets me? What really shatters me is when they tell me how lucky I am. How I wouldn’t want to feel as horribly as they do. How I shouldn’t want to be pregnant. How I’m so fortunate. It makes me feel invisible. It makes my heart ache. It makes me shut my mouth. It makes the heartache worse. It makes me defensive. It makes me scream, DO YOU KNOW I AM DOING THIS BECAUSE I HAD CANCER, AND THE HORMONES WOULD KILL ME, AND THEN THE BABIES WOULDN’T HAVE A MOTHER?

It makes me want to shut down communication. It makes me call my cancer friends in tears. It makes me rush to Callanish, and it makes the words of anger and sadness and confusion and frustration pour out by the bucket. It makes me feel like the wedge between us grows, exponentially. What I wish they would say instead, is that they have no idea what it would be like, to have their developing baby outside their body. What I wish they would say instead, is that they are listening to what I am saying, and they don’t know what to say at all. What I wish they would say instead, is that they hear me, even if they cannot relate. Tonight, the pregnant facilitator of the Young Adult group looked me in the eye and said, “I have no idea what it would feel like to have my baby outside my body.” My eyes filled not because I was sad, because I finally felt visible. Heard. Seen. She doesn’t understand, but that’s not the point. I don’t want her to understand. What I wanted from her, and what she did so gracefully, was to centre herself in her own experience- which made me visible. What I wanted from her was to hear her talk from her place of knowing, and for her to acknowledge what she could feel, and how she could know- and also, what she can’t know in her body. She didn’t tell me how I should feel, what I wasn’t missing, or how her experience should or could narrate, explain, or justify my own. And in doing so, she made space for me, too, made space for the unknown, my unknown, together next to hers. Not the same as, but next to. Listening to. Knowing with. Space for. Enough. It’s all I could ask for. It’s all I could want. It’s all I need. Not the same as, but next to. Listening to. Knowing with. Space for. Enough.

I wonder why we have such an urge to narrate each others’ experiences. To compare what is worse. To tell others how it is. To use our own experiences to provide judgements and shoulds. To educate about someone else’s experience, while only knowing from our own. Sometimes I think education itself is an inherently violent practice, and this is why- for the hurtful possibility that telling someone else how to know something, how to be, from outside that someone’s body is just so violent. It is not about sympathy. It is not about comparing. It is not about you telling me how it is for me from your vantage point. It is about listening. Silence pregnant with listening, so much listening that there’s only silence. Caring. Listening hard. Listening to our inside voices.

And my inside voice? It’s time to be the fierce advocate I know how to be. It’s time to be full of fire. I will call the hospital tomorrow, the one where our dear surrogate had her eighteen week ultrasound. It won’t make a difference for me, but it will make a difference for someone else, I hope, in the future. It’s time to be the fierce advocate I know how to be, for our baby girls. It’s time to write into the birth plan what I know we need for them, it’s time to draw boundaries and make commitments and shape futures, because I am a fierce mama. She told me so, the other young woman with babies by surrogate after cancer. She told me making those decisions, doing what I need, asking for the absolute- that’s not being a bad mother, she said. That’s just the opposite- that’s being the fierce and hopeful mother you have to be, the one you already are.

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the worst part

I got excited.

I thought we could have a baby, and soon. I was imagining strollers and waking up in the middle of the night and that tiny-baby smell. I started thinking about how maybe things would work out, maybe the cancer hadn’t derailed all the baby-making plans entirely. I got ahead of myself. It’s important to be measured and careful in thinking about having a baby via surrogacy, because there are so many things that could go awry. Things could get out of hand because it’s such a profoundly weird thing to contemplate for all parties involved, because it requires such massive amounts of paperwork and documentation. Thing is, I probably wouldn’t use “measured” or “careful” to describe my personality. Certainly I am organized and efficient and I have my sh*t together, but I don’t like to wait. I like to run with the wind with all abandon and move quickly and jump into new situations with both feet at once. Of course, you can’t exactly run with the wind when you’re asking someone else to carry your baby and there are so many hearts and souls and bodies involved, and someone could get hurt.

This is the worst part of cancer. The fertility derailment is the worst part of cancer, I mean.

There are less hearts involved if you hire a surrogate though an agency, but that feels creepy-crawly, it feels like baby-buying and it feels like something I want to shrug off, though the possibility lingers. And it is $30,000. That is the easier route, and also the totally unaffordable route, but it’s clear to me why some people choose that route, why they don’t want to risk heartbreak, why they don’t want to get family or friends involved, why they have fundraisers and sell heirlooms to pay a stranger to carry their baby. I get it. I also get that this is not an option available to most young adults who have had cancer, for financial reasons.

Sometimes I think I should just go off my estrogen blocker and get pregnant myself, and I will begin my research on this option in earnest, tonight. The gist of it is that my cancer responds to estrogen, and the estrogen-blocker I take every night would be potentially harmful to a fetus. I take this estrogen-blocker to prevent a recurrence: even though I’m cancer free right now, this drug makes a serious dent in the possibility that my cancer recurs. It’s interesting, because the estrogen-blocker (tamoxifen) used to be used as a fertility drug, until too many babies were born with birth defects.

And so I’m left in a quandry: wait another year, until the oncologist semi-approves of me going off the drug and get pregnant myself as it appears I’m still fertile; get pregnant now, anyway, because I cannot wait even if it means going off the estrogen-blocker; or muddle my way through surrogacy and search for someone who might be in a place in their life to carry a child that is not their own, now. There are no good options. It is the worst part of cancer.

What’s a girl aching to have a baby to do? Certainly, I wish we hadn’t waited until now. I wish we hadn’t listened to the people who said we should wait till after the Ph.D., I wish we hadn’t talked ourselves into the sensibility of waiting, I wish-I wish-I wish, but as we all know from trying to wish cancer away, wishing falls flat in the face of reality. I want a baby. I think we would be great parents. Now’s as good a time as any, and I so badly want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby. I want a baby.

Someone wise told me once that grief is the space we reside in when we refuse to accept life as it is. And perhaps they were right. I cannot accept that we can’t have a baby, I don’t even know if I can accept we can’t have a baby, now. And so I put this out to the universe, not expecting a response but in grave need of guidance: What do we do now? Do I go off the meds, and get pregnant? Do I search high and low for a surrogate? Will one appear in my life, or is someone already in my life ready and waiting, because the universe knows how much we want a baby? Do I decide to wait until my oncologist grants semi-approval? Do I forget the whole baby-making endeavor entirely and focus on writing an academic book?

Ha. As if I could forget. Anyone who knows me knows how very stubborn and determined I am. Watch me make this happen. Somehow.

So community of mine, spread the word. We’re looking for an answer here, in the form of research about very young women and tamoxifen and pregnancy, or in the form of contacts and ideas and innovation, or in the form of support and love and care. So community of mine, where do we go from here?

Some videos

I’ve made lots since I had cancer, but not published any on the blog, or elsewhere, for the most part. Here are two: one from this week, one from November, just after I was diagnosed.

regrowth. resistance. resurgence.

 There has to be regrowth. Resistance. Resurgence.

My body has resisted. Each time I was pumped full of poison meant to kill the cancer cells, poison that also killed my intestinal cells, the cells that become my hair, my red and white blood cells, and the cells on the inside of my mouth, my body resisted. That poison made me feel like I was dying, and each time, my body built itself back up. My body scrambled to make sense of what was happening, and I got better. Every time. It got harder and harder, as evidenced in my blood cell counts, where each week, my white blood cells count dropped lower and lower, and each week, it couldn’t quite get back up to where it had been the previous week. That said, it never dropped below the very low end of normal, hovering at .4 above the lowest “normal” at last count. Bodies are amazing. I am amazed that my body recovered each time, time after time, especially because as soon as my body was just starting to get a hold of things again, boom, I was pumped again full of poison. No time to recover on the dose-dense cycle. As the weeks wore on, my nails really started turning colors. They yellowed, and they grew extraordinarily brittle, and they flaked and they grew too tender for manicures. I hated it.

Now, it’s been just about three weeks since my last chemo. A week ago, my friend Ariana and I got manicures. The manicurist tried to buff off the yellow, but of course failed, for this is a yellow deep inside my nails, the physical manifestation of weeks in and weeks out of chemotherapy, the way the cancer treatment wreaked havoc on my body. In the last few days, I felt like the top half of my nail was not attached to my nail bed. It was odd. Today, I removed the remaining pale pink nail polish, and look what gross-ness I found underneath.

ImageImage

But also. Underneath the yellow and the white and the dead and the ridges of nail utterly exhausted from trying to cling on, there is normal, pink nail bed. Time is marked on each nail, and I can see that after the ugliness grows out there is something sweet and pink and healthy. I can tell that the poison will drain from my body (and hopefully it will take the last of the cancer cells with it) and that soon, there will be evidence of health growing on my fingertips. They might still fall off. I do not know. Where they are discolored, they are not attached to my nail bed, and each time they bump against something, or get caught on the sponge when I’m washing dishes they hurt and I have to look down, wondering if I’ve torn the entire nail off.

I could get a manicure. I did once already, to cover up the ugliness. I won’t this time. I’ll watch, as they grow out and the gross-ness fades away and new nail is born, and my body stays strong enough to keep growing new nail until all of my nails are pink and healthy, and none of them are dead, yellow, painful. It is the passing of time, marked visibly on my body. It is the passing of cancer, marked visibly on my body.

There are so many ways that my nail growth mirrors the emotional havoc that cancer has wrecked on my life, and on the lives of people close to me. It will pass. I will still snag my nails, they will still ache, just as cancer will continue to f*ck sh*t up and meddle in both my day to day decisions and my longer life plans. But soon, it will be less visible. I will cut my nails and the cancer will move to a place of lesser prominence. It will no longer be front and center.

There will be regrowth, even in place my body has resisted. There will be resurgence of things I love, and already, that is happening, resurgence of things I love that were pushed to the side and forgotten about while cancer took center stage. There will also be splinters of resistance, the cancer not wanting to be entirely forgotten, and I see the small white marks still marring the bottoms of my nails, and I wonder how long it will be until my skin returns to normal, and the dry, dry chemo-wrinkles that make my hands look over sixty fade. Or will they fade? Certainly, there will be permanent scars, on my breasts and in my armpit, and on my collarbone. With time, those will fade, too. But my body will be forever changed, and because my body will be changed so to, will my experience of the world. For now, I will watch as time marks my fingernails, and the days go on and on and pile up high enough that my fingernail clippers can remove all traces of discoloration, all the brittle and yellow and brown cut off, forgotten. For now, my fingernails will remind me that time marches on, and that cancer has an end, and that there will be resistance, resurgence, and regrowth.

othering me: i can’t fold my body that way

Ouch, she said. It’s the bones, of course. It’s not being able to move normally. It’s aching from deep inside the marrow. It’s a tremendous pain that begins as soon as I sit down, lay down, am still. It creeps through my ankles and hips and ribs and femurs and spine. And so I walk. I pace. I go to yoga and kickboxing and the gym. I ride my bike. I bounce on my toes at my standing desk while I type.

I’ve never had chronic pain before this. Sure, my back hurts sometimes from sitting in front of my computer writing, and my ankles are weak and perpetually sprained and swollen from my totally clumsy way of navigating the world, but it’s never chronic pain like this. I mean this is actually, pain. Like a really terrible headache, but in my body. Sometimes I can feel the toxicity-based-pain in my skull and in my fingers- no bone is spared, but mostly, it moves quickly between my hips and femurs and ankles. I am the highest dose of the medicine that’s supposed to fix this, but alas, it hurts like a b*tch. Luckily, it won’t last forever. As soon as the ugliest poisons are diluted enough each cycle, the bone pain will fade, leaving in its place neuropathy, which means that my hands and feet are basically numb from absorbing so much toxicity. Probably, the bone pain will fade tomorrow. Then I have one more cycle left.

Today, I went to an academic lecture and discussion at UBC. I went to a different one last week, and at the beginning of that one, the speaker said something to the effect of, “I want to invite you to do whatever you need to do with your body to be comfortable, whether that means walking around, stretching, laying on the floor, sitting on a chair, etc., in order to bring awareness to the ways that academe shapes and disciplines our bodies and excludes particular ways of being in the world through that shaping/disciplining.” I thought that was so cool, and today, I would have taken her up on the offer. After ten minutes of listening to today’s lecture, I couldn’t sit in my chair any more. The bone pain was traveling between my hips and my femurs, and I had to get up. I stood in the back, pacing and bouncing and marching in place. I’m sure people were like what-the-eff? I worried I’d distract the speaker, but she never looked up from her paper.

And so then we moved spaces, and the group became markedly smaller, and we had a “discussion.” I warned the person convening the discussion I’d need to move about beforehand and she was entirely fine with my doing laps around the meeting table, but I’m sure the other participants were like WTF?

I can’t fold my body that way. I can’t fit into academe’s stringent body-shaping. I can’t sit in a chair for more than ten minutes, especially if its lecture/professional-style, with my feet on the floor and my hands in my lap, and the only variation is crossing my legs.

Today’s experience trying to mold my body into normative shapes and be comfortable about it felt glaring. It was just another time, and now, a time where it was very obvious to others, that I no longer belong in the realm of the healthy normal, a time where I had to broach normativity and where I embodied otherness in a way I never did before cancer. You see, I am and have a body I can normally make fit, a body that can normally access privilege without a second thought. I am a white body, a cis-gendered girl body, a body that is whacked and policed and monitored through gendered body image, but nevertheless a body that fits in airplane seats easily and that can fit into the sizes available at stores where I shop.

Because of my body, I’ve gotten a lot of “things,” if you will- I’ve gotten on airplane and flown across multiple states without any identification post-9/11, and I assure you, this ability to convince folks I was just a girl with a lost purse and a real need to get home was directly related to my race and gender and relative young-ness. At that point, I was probably twenty, maybe twenty-one, and I smiled cute and shrugged my shoulders and forced my eyes to fill with tears when they tried to block me- and suffice to say, I got from Houston to LAX without a hitch and even ordered some alcohol on the way.

Similarly, most of my before-cancer experience in hospitals took place in Latin America, where I was a white female body negotiating for care for other white, mostly cis-gendered female bodies. I knocked that shit out of the park- I got the best doctors and I cut all the lines and had all the tests expedited. I refused to wait, and so I got what I wanted- be it a helicopter to air-vac a teenager from Nicaragua to Miami now, or be it skipping ahead of the waiting-room full of patients, or be it having the doctor close her office to drive with me two hours to someone with an allergic reaction. You don’t need to tell me how insanely colonial and racialized this is: effectively, I used the power afforded to me by my white skin, my emergency credit card, and my ability to demand I get what I want to make sure my people were treated before everyone else. I took full advantage of all sorts of privilege and justified it by saying that the people I was caring for needed it, and that I was insanely busy and couldn’t wait in the waiting room. We could do a whole analysis of development work and youth programming vis a vis health care, and the sorts of colonizing relationships justified in the face of something like health, or safety. But such is not today’s topic.

Today’s topic is that today, the multiple ways in which cancer has othered me, in many ways for the first time ever, became blatantly apparent in the lecture, when I became so other, so unable to meet the simple and normative standard of sitting in a chair and listening. It’s not just this moment, there are many moments in which cancer makes me the other.

bell hooks, writing about her experience in graduate school, writes “nonconformity on our part was viewed with suspicion, as empty gestures of defiance aimed at masking inferiority” (hooks, 1994, p.5). Refusing to conform by sitting did indeed warrant scowls and stares, raised eyebrows that seemed to suggest, “And why can’t you simply, sit? And why can’t you discipline your body, as we are, here, together in this room?” Of course, they would have certainly looked the other way and nodded knowingly, probably with pity, if they knew I had cancer. But they did not know, and they seemed to ask, why must you refuse this basic norm, when we are already here in a space that feels threatened, discussing critical race theory, when we are here already trying to undo legacies of colonialism, racism, misogyny? Of course, they didn’t actually ask, and I am writing of how I interpret their gazes on my body, their turned heads and the feeling emanating from their body to mine.

I wonder, did they remember what the last speaker asked, about making space for bodies out of chairs? Did they watch me bouncing on the balls of my feet in the back of the room and think, like I did, of the last speaker who gestured to refusing that our bodies be disciplined by chairs? Did it occur to anyone, that we were together discussing global justice, talking about capitalism and its ill-will, and that, perhaps the reason I was pacing was because the front-end of capitalism- cancerous invasion of our bodies- was playing itself out inside of my breast?

No, I am sure they did not think that. But that is not the point. The point is, cancer has forced me to experience otherness in a way I never did before. Even in the cancer-world, I inspire horror. Regularly, when I meet older women with breast cancer- which is like, every day- they gasp about my age. Their hands fly to cover their mouths as they murmur, “but you’re so young.” In the regular world, horror, too. I inspire skin-crawling fear. I embody that which no one wants to be. Nobody wants to imagine it could be them, and I’m too close. That girl, that almost-Ph.D. with cancer. It’s easy to imagine it only hits the old people, the sick people, the people who drink too much coke and eat too much fast food. Having me in your midst disrupts that false sense of security, pops the bubble of the other— the other is your peer, your graduate student, the girl sitting next to you. Even at the breast cancer exercise study, I’m decidedly othered as impossible in relation both to the many older women present, and most significantly in I’m othered as impossible in relation to the graduate students working on the breast cancer project: for they are different than the women with breast cancer. Except then there’s the grad students with breast cancer. Sorry dudes, I’m here. We’re here.

There are of course safe spaces. There are safe spaces too, of course. There are knowing nods from other women with cancer. There is the fact that everyone in my academic circle is insanely supportive. There are big hugs and knowing hugs from my academic mentor who had cancer, and who is of course in charge of this space.

But still, there are the raised eyebrows. Surely, they would turn right into kind eyes if they knew, but I think the point here is that we can’t always know. Besides, its entirely unfair to only be accommodating when you know, and puts the burden of educating and informing and telling directly on my shoulders to expect me to justify not being able to fold into an appropriately disciplined chair so that others can be comfortable, can be knowledgeable, can make kind eyes instead of eyebrows-raised-eyes.

And so I have to wonder: what might a pedagogy look like, where there are no expectations? Would it be a pedagogy of encounter? Situating the self in relation to other in such a way that denies and rejects expectations is such work: like anti-racist pedagogy, it takes consistent encounters with the uncomfortable, consistent ability to reside in a space of unknowing, consistent willingness to f*ck up. How might we encounter the political in the space of cancer, in the face of the constant seduction of normalcy, of body policing, of urge to hide cancer, of positivity? What does a political pedagogy of cancer look like, and how do we engage such a pedagogy as communities of people where not everyone has cancer?

I wonder what would happen if we took the chairs out of the lecture? What if we sat on pillows instead? What if we started each lecture with some way for participants to share their experiences of the day, like -oh no, here we go- with an energizer or short check-in? What if we put on different ways of sensing the world, and thought theory through those glasses that are not our own? How do we think about what is radical and political, in a space already so policed that we almost need normativity in order to gain credibility? What does it mean to be a young scholar who cannot fit oneself into normativity and cannot thus gain credibility that way?

There is much yet to think about in terms of how cancer others.

There is much yet to think about in relation to how we might engage a political and embodied pedagogy of cancer.

There is much yet to think about in a world where we so clearly wish to ignore, expel and banish cancerous bodies.

maybe.

I had the dreaded chemo Thursday. Today is Saturday. It’s only Day 2. Based on my last three experiences, this fourth one should have brought endless sleep and icky nausea and general malaise.

It is different this time. Dare I say, I feel OK.

Yesterday I woke up so, so, groggy and made myself drink some ginger tincture, and went to the exercise study (deserving of a post in itself, but I go to a little gym three times a week full of women with breast cancer and a lovely trainer and I’m a research subject instead of a researcher). I walked on the treadmill, which I never do, not even reaching my target heart-rate, a number I usually far exceed. I lifted weights and chatted with the only other woman close to my age in the study. I stretched. Then I left, and I bought $10 organic berries from Whole Foods. I gulped some ginger tincture. I had tea with my fellow dissertator S, which was lovely, and came home and napped. I got up and rode my bike to yoga, where I practiced next to D, one of the most hard core exercise people I know. I did one set of everything, and two sets of some things, and I laid in savasana a lot. Then I biked home and had more ginger tincture. And I made an awesome dinner for Sammy and me– vegan mac’n’cheese with quinoa pasta! Amazing. The cheese was red bell pepper and tomato and onion and cashews and turmeric. Delish. We cuddled and watched one of the amazing movies our dear friends lent us (don’t worry, we are taking such good care of them!) I thought maybe I was feeling OK from the steroids, but this morning, also OK. I woke up and Sammy made me fruit salad and I ate it all. That’s right, I ate something besides plain white rice and frozen grapes. And then I cleaned the kitchen. And now I’m writing a blog post and drinking the chai tea my college roomie sent. And I don’t feel like I’m going to hurl. I better have some more ginger tincture.

I spent the whole day only taking care of me and my body. I worked out twice. I napped. I listened to Sammy play the marimba for me. I ate whole, organic, home-made, good foods. I drank warm tea. I biked in the sun. I wrapped myself in an aqua shawl, which is a healing and calming color. I cuddled with Sam and wore fuzzy slippers. I took a bath and read a novel (not a diss book, people. a novel, a fun book, a story). I went to bed before midnight. Maybe we should all take care of ourselves like that more often. It occurs to me that taking such good care of our bodies is pretty rare. When was the last time you put on fuzzy socks and brewed your favorite tea and read a really good book for fun? When was the last time you thought about what color you should wear to make you feel good? When was the last time you just layed in the sunshine and let it soak into your skin? When was the last time you really tasted a berry salad? When was the last time you were brutally honest about what you want in life? When was the last time you let yourself day dream? When was the last time you let yourself sink into soft blankets without thinking of anything but how soft the blankets are? When was the last time you let yourself lay in savasana in yoga? We should do that more. We should take care of ourselves more, we should surround ourselves with soft moments and caring and color and kittens.

I’m kind of waiting for the other shoe to drop. I expected to feel crappy. I dreaded this chemo. Sam had to change his schedule all around to come with me even though I had other chemo-buddies who volunteered, since I was so worried it was going to go poorly. People sent vibes. Maybe it’s that. I have not taken off these anti-nausea wrist bands. Maybe it’s that. My mom generously gifted my a totally epic massage at the Hammam pre-chemo, and it was divine. Maybe it’s that. People brought movies. Maybe it’s that. The naturopath prescribed all kinds of things, including ginger tincture, and I definitely think it’s that.

It just feels… tentative. Maybe this weekend will be OK. Maybe I can go on a walk in the sunshine with a visiting college friend. Maybe I can finish editing my job letter. Maybe I can do laundry. Maybe. Maybe. Maybe.

That’s kind of what life is right now. Maybe I can do this or that or the other thing. Everything is uncertain, because I have cancer, and also because I’m on the totally uncertain PhD job market, and I’ve only had on Skype interview which resulted in not getting a follow-up interview. Maybe I’ll get an academic position- a job or a post doc or something. Maybe we’ll be in Vancouver at this time next year. Maybe I can go to yoga tonight. Maybe I’ll lose my eyebrows and eyelashes in the next round of chemo. Maybe I’ll remember to buy green tea the next time I’m at the store. Maybe it will help that I’ve cut flour, sugar, corn, soy, eggs and most animal products (I just can’t give up on cheese entirely) out of my diet. Maybe it makes sense to have radiation. Maybe I should contact an editor at MIT press about getting my diss into a book. Maybe the chemo will work. Maybe I’ll go on a young adult cancer adventure retreat. Maybe my cousin will be pregnant with our baby sometime soon. Maybe I should go to the store and buy out nausea wrist bands and ginger gravol. Maybe I should write my methodology. Maybe I’ll continue to feel well.

Working with uncertainty, living in uncertainty, feeling out what it means to live in this world with maybe, without the ability to reliably envision and depend on any kind of certain future. Today, uncertainty is delivering a sunny afternoon and a calm-ish belly. I’ll take it.

henna

I’ve done henna a few times. Once, at an Indian wedding where the artist stayed during the reception and painted hands in a booth. Another time, Telegraph Avenue, teenage years. Casual henna. Nothing serious. I’ve always thought the curls and scrolls and dots were intriguing, whimsical, fun.

ImageAnd so, Friday night after my BFF arrived I limped into the henna shop, sat myself down in a chair, and chatted with two sisters while they freehanded my head, promising me the whole time it would make my hair grow. I was limping because, well, you know, there’s so many things they don’t know about my diagnosis, my medicine, my treatment, my outcome, and this time, my side effects. To look at the bottom of my feet, you’d think nothing was wrong. They look entirely normal.

Five or so six days ago, I thought I was developing some kind of painful-ish callus on the bottom of my foot. So, of course, I set up a foot spa. I used a bubbly soap specifically for feet, soaking for a while before I went at that callus with an industrial strength pummice stone. I scrubbed and scrubbed, and my feet became oh so very soft, but the weird pain was absolutely not going to be scrubbed off. I probably made it worse in my quest to pummice-stone the pain away, but really, who would think chemotherapy, injected into my veins and traveling through my blood stream, would cause painful spots on the bottom of my feet?

By the day we went to get the two sisters in their red henna and brow bar to paint my scalp with curly cues and squiggles reminiscent of of peacocks and spring flowers, the pain was becoming really significant all over the right foot, and starting up on the left foot. What’s a girl to do? Obviously, strap industrial strength ice-packs to the bottom of my feet and curl up in bed. It was becoming so bad that I could only walk with thick fuzzy socks and slippers on my feet, even inside.

The next morning, worse. I went everywhere in the slippers and fuzzy socks- outside, grocery store, yoga, even out to dinner with my jeans tucked into myphoto(23) slippers and my hot pink extra-fuzzy socks peeping out over the side. It was classy. When I called to report this ailment to the nurses’ line, they had the on-call oncologist call me back. She was baffled. Totally confused. The kind of chemo I’ll receive after I finish the AC is Taxol, and Taxol can cause numbness in the hands and feet, but right now I’m on AC. And AC never causes numbness, which is the most common symptom of taxol-caused-neuropathy, though occasionally there can also be some pain. Nevermind the fact that my feet are absolutely not numb, but rather, intensely tender and painful. She called another oncologist, inquiring about possible causes. Nothing. No one knows why my feet decided to freak out and put a halt to walking for a few days. No one knows why they look kind of like they are the wrong color and are still tender to the touch. Simply, no one knows. Most people around me seem horrified that they could not know what is going on, or at least, that they couldn’t figure it out or venture a guess. To me, it seems par for the course. There’s so many unknowns, so much uncertainty. Cancer is, precisely, not knowing.

An hour after the sisters started my henna, they finished. I left the henna on all night, but still, it didn’t set very well, leaving only a pale orange-ish print all over my scalp. Still, it was fun. I like it the curlies and the dots and the little designs they painted. I’ve not really worn it this way in public, still wearing a wig or a hat, but I did wear it this way in yoga, which was entirely anti-climatic and totally fine despite the fact that it seemed like a big deal I was going to yoga with a bald head. I do wear it this way at home, admiring the designs in my reflection in the mirrors and windows. It’s much too cold to go out with a bald head, anyway.

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