I’m being researched

Everyone keeps saying cancerland will eventually stop being so strange, that eventually I will become accustomed to the smells and the colors and the multiple times each day that “BC Cancer Agency” pops up as the caller on my phone screen. It’s been three months now, exactly. Today’s my three-month cancerversery, and I still find it profoundly strange and destabalizing, despite the fact that I have now amassed so much cancer knowledge I could write a second dissertation on the subject. There are really significant ways my life has radically changed in the past few months, and really mundane ways in which it is utterly the same.

A major marker of the radical-cancer-shift in my life is this little pedometer that I have in my possession. I am supposed to wear it to track my steps per day. I need to do this for seven days in a row. I am utterly incapable of completing this simple task. You see, I am part of a research study, and for some reason they want this information. That’s right, I’m a research subject. The research project is about women with breast cancer and how exercise improves the chemo experience (anything would improve “the chemo experience,” dare I say, which is the worst experience ever), but I suppose the goal is noble- to make having access to a gym and a trainer the standard of care for women with breast cancer in chemo. I could also write some kind of significant article about being a research subject, which is profoundly weird. Wow, I should totally do that. I could be a researcher researching the researchers researching me.

Anyways, back to why it’s so strange, being researched, that is. When I go to this gym space, lots of people are more than a decade older than me, and most of them are more like two or three decades older than me. There’s a bit of horror around my presence in that space, and a whole lot of “you’re so young.” Sometimes women in that space who are, like me, searching to understand why cancer happened, ask me questions like if I carry my cell phone in my bra, because they saw on TV that the cell-phone-in-bra-phenomena causes breast cancer in young women. I feel defensive when this happens, and anyone who’s worked with me in Latin America knows the best location for a Nicaraguan cell phone in hundred degree heat is always in the built in bra of a tank top. I assure you, that’s not why I have cancer.

Other times, reconstruction comes up, and a couple of women have now told me that if they were young like me, they would have had reconstruction, but it doesn’t matter now that they are “old” and “not like me” and “don’t wear tight shirts.” This is such a perplexing conversation to me, especially because it repeats again and again with women older than me who have had breast cancer: what is it they are actually saying? That women over fifty are not sexy? That I need to have breasts to be sexy because I’m young? That younger bodies need to be sexy, and that one must have breasts to be sexy if one is appropriately girly? That I will stop caring about sexiness on the day I turn fifty? That I should wear tight shirts so people can see two breasts? I’m confused. As far as I know, people over fifty have sex, still want to be sexy sometimes, if not all the time, whether they have breasts or no breasts, and sometimes even wear tight (read: sexy, I think?) shirts, and also, there are clothes that are not tight shirts that are sexy, and people without breasts who are sexy, and there are people who have sex with one breast and presumably are just fine. It’s not like reconstructed breasts are right front and center in the sex realm, because they don’t have any sensation, people! Really, now. I find these conversations really interesting, when everyone tells me they made X reconstruction decision, but would have made Y decision if they were young, and so I should consider Y. My reconstruction decisions, though, are another post.

So back to being researched. It’s a quantitative study. Numbers. Rankings. Counting of steps. This kind of research kind of makes sense to me, but I’m constantly perplexed about all the ways in which I cannot be encapsulated as a research subject, into a number of steps per day and a 1-10 ranking of work-out difficulty. The steps, oh the steps. I can’t remember to wear this pedometer, so sometimes I shake it vigorously above my head, until the number of steps on the screen accounts for for my walk to the store, and maybe a little more- I don’t want them to think I’m inactive. Ah, the performance of good research subject- there it is. Here I am, manipulating their data so that they think I approximate what I think they think is “good.” Same with the ranking of my workout: each time when I get off the treadmill, I am asked to rank how hard I worked. I subtly shift– “well, I didn’t feel good today, so I’ll go with a low number to reflect my nausea,” or I think, “my heart rate was really high, so pick a higher number even though it didn’t feel very high,” and the truth is, I don’t know what I’m comparing to, so I just pick a number somewhere in the middle, lest they think I found it hard to exercise on a treadmill! I want to know, how is this accounted for? How is my ambivalence about the pedometer represented? What about the conversations on the treadmill about reconstruction, where are those in the data? Where am I, where is my body, my experience, me, in the data?

My body, my experience, me is not in the data. I exercise because it is supposed to improve my chemo-experience, but nothing is mentioned of the community of people with breast cancer, and the possibility that my experience is better not because I am exercising but because I am able to relate to a whole bunch of women on the same breast cancer trajectory as me. Instead, I am translated into a series of numbers and points. In a multiple-page questionaire, I was actually asked to rank my feelings 1-10, and to pick a number for how breast cancer changes how much of a woman I feel like. A number! I couldn’t answer this question. I literally didn’t know what they wanted. I wondered if they were asking about my femininity in relation to being hooked up to and flooded with poison every other week? Or were they asking about if losing some of the body parts that make me an F on my passport made me feel less like a woman? And what did they mean by woman? I’m still floored when I think of that initial survey, and the assumption that one could answer a question about one’s embodied way of being in the world with a number. How utterly minimalizing.

Then there’s the “volunteers” and “students” and “PhD student researchers.” I can’t quite figure out what their purpose is, these mostly UBC students who seem to do little more than weave between exercise machines making small talk with women as they work out. Sometimes they take blood pressures and heart rates, and maybe they enter data or something, I don’t know. When they come to hover near my treadmill or bike station, I never know what to say to them. Technically, many of them are my peers- MA and PhD students at UBC. However, they would never know this. They never ask what I do. They already know enough about me: cancer. In relation to them, that’s all I can be. It seems I am supposed to ask them what they do, though, so I do, and they tell me they study exercise and physical therapy and cancer. I keep my identity secret, though I’d share if they asked, and insideI roll my eyes a little bit because it feels like they think they occupy a very special student-place in relation to those of us who are merely, cancer. It’s as though they cannot fathom that one of their peers- another PhD student- could ever inhabit this space of breast cancer, could ever be a body with cancer. I am just another body on a machine, my worth is as a research subject, not as a peer who is also a graduate student. I offered the information up once, to one of these people identifying herself as a “PhD student,” and she engaged this information briefly. Then I mentioned I didn’t feel I was getting enough of a work-out with the target-heart-rate, and she told me to trust her, she knew what she was doing, and she knew bodies on chemo, because she had lots of experience. At that point, I shut down completely. Obviously, I know my body best, and I know when I’m not working hard enough, and I know best what I need, chemo or no chemo. And yet, she’s “the researcher,” she knows, and presumably, I, the research subject, don’t know, because I don’t know “bodies on chemo” or have this kind of experience.

Except I am a body on chemo. I live from inside a body that receives chemo, and I am the one to animate and feel this body-full-of-chemo in the gym as well. I have this experience of being a body on chemo. From the inside. I think in fact, the researcher should trust me. How could anyone know better, from outside this body on chemo, what is best for this body on chemo?

And yet, I think I’m supposed to feel grateful. I don’t think I am supposed to complain or wave my critical feminist theory in any one’s face. After all, they are giving me a gym. They are letting me work out under the supervision of a really awesome and compassionate trainer. I think I am supposed to clap and smile and be grateful. What is it about this research project that engenders this particular kind of subjectivity, where I feel a need to perform thank-you-for-allowing-me-to-particpate?

I look, aghast, at my own research. My own participants. My own youth. They said thank you. They must have felt similarly. Thank you, because since we participated in your research project we got to make movies and have access to media tech, and so we now need to perform this same kind of thank-you that I feel I need to toss out every time I leave the gym. I know my project- an interventionist one- had this tendency. I try desperately to engage it in my writing. I think that qualitative work has a better chance at dealing with some of these complexities, though I know I delude myself somewhat in order to continue doing this work.

I cannot fathom any way in which this feeling circulating around and inside of the gym where we go to exercise and provide our rankings will emerge in the data. Quantitative data can’t do that. It leaves no space for my objection. It holds no recognition of the big, fat feeling hovering over each number I provide. It can’t account for how we relate to each other or situate one another as we are so busy learning how to be and do and embody researcher, researched, breast cancer patient, breast cancer trainer…

What’s incredible is that I have about seventy million more paragraphs to write about this… but I need to go work on my actual dissertation research. Youth media production project, I’m coming, and now that I’ve been a research subject, we got some things to talk about!

cancer-helping: appreciative inquiry style

I’m hesitant to write this post. But I will write it anyway. I will write it a la appreciative inquiry.

I’ll write it because whenever I hang out with other young (and not as young) adults with cancer, it comes up. I’ll write it because for some reason,  people keep forwarding me these lists of “what to say/not to say to you your friend with cancer,” which I think it so interesting because I’m the one with cancer, and presumably, I know what not to say. Sometimes, they’re cheeky. Often, they’re grimly funny. Always, they hold some truth. You can easily find multiples of these lists if you google “what not to say to your friend with cancer,” or something like that. Periodically, they float around Facebook and even other sites like HuffPost and NYTimes. It should be easy to find them.

It seems that, although there are myriad of these lists out in the world, those of us with cancer are driven to write them again and again because people don’t read them, and/or continue to say the things on these lists. Chances are, if you can find it on a list someone has said it to me at least twice, and I’ve talked about it with other young women with cancer. Sometimes I think there are so many lists like this that the over-proliferation of “what not to say” lists is why sometimes people tend to total radio silence: absolute fear of actually saying one of the listed “what not to say” things, because when you read them in list form, they seem absolutely insane. They provoke reactions like, how could anyone ever say that?!?!? Trust me, everyone could say these things, often they do, they don’t mean to be so wildly insensitive, and it doesn’t seem like they are so horrendous in the moment. Enough people say these things that I have a collective list running with some cancer-buddies. Even I could say these things, and I have cancer.

So, I won’t repost, reiterate, retell the same story about what-not-to-say, though mine is a related one. This is a story about the helping everyone around me wants so badly to do, the helping that always falls short of actually fulfilling what everyone would like to do, which is to take away the cancer. This is a story about the famous line, “let me know if I can do anything, anything at all,” that is accompanied by eyes that speak volumes more, that are spoken by dear people all around who desperately want to do something, anything. I am so fortunate to be surrounded by people who always let me know that they are willing to help me in any way I can dream up. And I think that when they say “let me know if I can do anything, anything at all,” what they really mean is, “I am so sorry I can’t make it go away. I hate that I can’t make it go away. I want to think of something that will make it at least a little tiny bit better, but I have no idea how to do that.”

Thing is, I’m not ever actually going to call any of them and ask them for help with anything. Why, you ask? Because I have no idea what to ask for, I have no idea how to start the conversation and while I do actually need help with many things breaking them down into chunks that won’t overwhelm my friends is cumbersome. I’m worried about overtaxing you. I’m worried about your reaction to this total madness. I don’t want to be treated like a tragedy, and helping sounds like something you do in a tragedy.

Now, if you’ve offered to do something for me, or help me with anything I need, please do not feel bad. I really, really do appreciate the sentiment. It’s lovely to know people are thinking of me. Frankly, I wouldn’t know what to say in many of these situations either. It’s a little mind-boggling, which is both why you look at me with those big eyes and offer to do anything I need and why I have no idea what to do with your kind offering of “anything I need.”  I don’t often know what I need right now, let alone tomorrow or next week.

So, I’ll list here some of the most helpful things people have done, that don’t make me feel like a tragedy, and that are very helpful. I think the done part is key: all these people acted. Sometimes, doing is really helpful. Sometimes, friends know what might make the day a little brighter, or the treatment a little less awful, or writing a little easier. They did something, and its the action there that is the best thing, ever, because it’s concrete. It’s a concrete suggestion/offer/action, and I can engage with the concrete, and I don’t need to do any of the work thinking up what they could do that would be helpful.

This exercise, for me, is a little appreciative-inquiry-y. I learned about appreciative inquiry from my artist-friend Sita back in 2002, when we were but baby AMIGOS living in Barahona, DR. She is someone who can sit quietly in any corner of the world and listen, and hear beauty. Not rainbows and unicorns beauty, but real, solid, thoughtful, inspiring beauty. She can then move others to listen carefully enough until there is a whole symphony of beauty sounding out from that corner of the world. That’s something to aspire to, and that is the embodiment of appreciative inquiry. When we think with an appreciative inquiry lens, we think of what’s worked really well and acknowledge those things working well, and make more of them, because we know that our bodies, communities, worlds are capable of healing themselves without the crazy amount of fixing and making better that are endemic to the Western world. It’s a way of thinking about situations and people and worlds that have historically been treated as broken such that we can recognize capacity and sparkle, and build on capacity and shine sparkle. It’s about vibrancy, it’s about what already exists, what is already right. It’s about holding others carefully and closely, and seeing creatively, and it’s about a deep respect for others and it’s about grounded hope.*

So here we go, a list of the most awesome ways people (some of these the same person over and over again) have helped, when I didn’t need to come up with what they could do or what I wanted them to do or what I needed:

  • I got a text message today that said, “What was the happiest moment of your day today?” Immediately, I knew she was thinking of me. I was invited to think of something sweet. With her text, she acknowledged that my life is not entirely crap-filled, by suggesting that something was great enough in my day to share. In responding, I got to think about multiple really special things about today, and decide which one to share with her. It was a mutual exchange. I could ask the question back, and she could answer, and I could delight in her own moment of happiness.
  • Appointment Buddies & Remembering Dates One friend asked for my appointment dates, my chemo dates, all kinds of dates. He periodically checks in before each of these dates, which he put in his calender, to make sure Sam can come with me or I have a buddy, and/or offers to come. I don’t have to ask him to remember. I don’t have to remind him. I know if I need a buddy, he’ll ask a few days before. It takes all the pressure off of me to make sure I have someone coming. He’s totally fine if I already have a buddy, and doesn’t mind being on stand-by in case I need one. He lets me know exactly what his schedule is around the appointment times, and around my chemo times, so that I know when he can help if I need help.
  • Persistent phone messages An old friend has left me probably four phone messages in the last two weeks. We recently caught up on facebook chat, but we still have not found a time to talk on the phone. Nevertheless, she continues to call. Because she continues to call and leave sweet messages, I know she isn’t upset with me for not answering, but rather, that she supports me and that when I have the time and spirit to pick up, she’ll be there. I know she cares. And she showed me its OK not to answer, both by saying so in her message and by continuing to call.  Her persistence is really important to me. It makes it so clear that she continues to think about what’s going on, and she continues to be there. She keeps calling. It’s incredible.
  • Normal Days  I have cancer, but I’m still me. I still also like to drink almond milk lattes and get my nails done. One friend in particular knows this really well. She still talks to me about the same old drama we’ve always loved to gossip about. She doesn’t ask invasive cancer questions. She shares whats going on in her life. We make dinner as we always have. The normalcy with which she approaches this new normal is comforting. She still expects me to support her, and I still want to. She still supports me as she always has. Going to a doctor appointment isn’t so different from meeting for coffee, after all. It’s really lovely to have a friend continue to be as she always has been, even though things have became anything but as they always were.
  • Pajama Box I have received two lovely packages with fuzzy jammies and socks in them. This is awesome, because it says, “Hey, I know things kind of suck, here’s some warm and fuzzy things that might make it suck a little less. Also, since my feet are freaking out from the chemo in the form of painful nerve damage to the soles of my feet, the fuzzy socks are now my best friends.
  •  Borrowed Movies I was really worried about my fourth chemo, because I was insanely sick after my third chemo. A friend brought me a splendid set of her movies, which I diligently have watched since the last chemo. That gave me something to look forward to even though I was dreading feeling crappy, and something to distract me from the fact that I was too tired to do what I wanted to be doing. And every time I get to watch one of these movies, I think of this friend lending them to me, and feel special that I am lucky enough to have a friend with such an amazing collection of DVDs.
  • A memory A girl I worked with on youth projects, and with whom I shared an absolute love of poster-making, sent me a set of poster-markers. These poster-markers were particularly cool, because they were exactly the same as the ones I attempted to quietly steal from her, one by one, during the time we worked together on said youth projects. This made me laugh. And dream up ways to use the markers. I was transported to another time, to a happy moment, and to a whole bunch of caring and friendship and ridiculousness I shared with this girl. I also knew that she would be using the same set of poster-markers as she cavorts around continuing to run youth projects, and that made me hopeful and excited about something else in the world.
  • Dinner & Snack-Pack Last week, someone brought me what can only be described as dinner and a snack-pack. They made a really simple dinner that was bland enough for my sensitive taste buds, and delivered it wrapped with ribbons. I did not know it was coming. It also came with a brown bag of tangerines, peanut butter & rice crackers, and a gingerale for me and a coke for Sam. It was really simple, but it was so important to me that this person also thought of Sammy- with the Coke! I’d never drink coke, but he loves it. And he’s also right here, dealing with everything with me, doing all the dishes and making sure my supply of frozen grapes isn’t low. It was really nice to have him remembered. And the tangerines and PB&crackers were a lovely next-day snack. It was so thoughtful and touching to come home to an already-made dinner after a long day of appointments.
  • A Visit From Afar Especially when people come from far-away, it’s a relief both to know they are coming and be able to express that that feels good, and then, for them to handle the rest of the process without me. It’s true, that it wouldn’t be OK for everyone to come a-running to Canada, but a few people visiting, mostly people from the inner circle and old friends, that’s really great. A friend called and said, “OK, I booked my tickets!” after we talked briefly about her coming a certain weekend. Another wrote and was explicit about exactly what she wanted to do while she was here, checked dates with Sam, and then also booked her tickets. I didn’t have to do much either time, beyond have one single conversation about how it would be great for them to come. I do live far from a lot of my nearest and dearest friends, so these visits are always welcome, and its so nice when people will lie on the couch with me, or go wig shopping, or endure an appointment, or eat plain rice and steamed veggies with me, or go with me to Bikram yoga because they’re here even though they hate the heat. I appreciate how little I have to do to make these visits happen, and how easy they are.

*Grounded hope. It’s a thing. It’s different than just hope. I have more to say about why I needed to qualify the hope as grounded, but I’m too tired right now, so I’ll write this little footnote later.

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.

Knowing

Normally, we don’t know we’re going to be sick. We might get there slowly, feeling a cold coming on and knowing if we don’t stop pushing we’ll be in bed for a few days. Sometimes you can feel something coming on, but if you can feel it, the hope is you can drink enough Emergencee to ward it off. Not so with cancer and chemo. I think that’s what is so unnerving.

Tomorrow is my last day of AC-chemo. I know, without a doubt, I’ll be sick- I just don’t know how sick. I’ve spent the last couple days refusing to think about the orange sherbert colored curtains and the volunteers pushing carts of ginger-ale and the nurse who has to robe up in order to administer the first drug because its so toxic she doesn’t want to risk spilling it on herself. But now I have to think about it. I am running around like crazy, finishing edits on this doc and that, doing the laundry, going shopping for the few foods I can stomach right after chemo.

It’s a mad-dash to get somewhere I absolutely totally don’t want to be.

Knowing I’m about to step into five days of what feels like the-worst-hang-over ever has produced a sense of dread in the bottom of my belly. The cancer agency should be trimmed with black, and there should be dark and scary gargoyles with red eyes perched on either side of the door, and they should play haunting music in the elevator. The sixth floor, the chemo floor, should be dark, scary, eerily silent. That’s how it feels to go there, even though its jarringly cheery up on the sixth floor, with florescent lights and big green reclining patient chairs and a guest chair beside each poison-pumping station. Don’t get me wrong, everyone is very nice up there on the sixth floor. The nurses smile and joke, the volunteers bring sodas and snacks, Sam and I are going to play banana grams and edit our wedding pictures. It’s just that the chemo floor reeks of illness, and worse, it so reeks of illness-about-to-come that even the thought of it produces nausea.

There’s something very odd about knowing I’ll be sick for many days before it happens. Add it to the list of weirdness in Cancerland.

And send your good vibes to me tomorrow.

estas son… las mananitas…

Disclaimer: While WordPress shows me as having written this on January 22, it’s really just barely 11 pm here in Vancouver, on January 21. So I didn’t mess up my birthday!

“Estas son… las mananitas…” are the first words I heard this morning. They came in the form of a sweet Mexican birthday song from Sammy. Today is my first birthday with cancer. I did some cancer-things this morning, like a blood test and then an oncology appointment. For those who are wondering, the oncology appointment was about three million times better than the last one– I only saw Dr. G, she’s going to gather more information to help me make the radiation decision, and she’s going to facilitate a plastic surgeon appointment with the plastic surgeon I want (who is way backed up and I don’t have an appointment until April) before the chemo is over, and she has some solutions and ideas on the weird foot-pain front. So, all is well.

The rest of the day was luxury. Writing in a cafe, even feeling energized and focused as I worked on final edits of my methods chapter. A hot pink iphone buzzing with happy birthday text messages from friends near and far. A nap in Sammy’s arms, with the kitties snuggled under the blankets. Hot, sweaty, familiar yoga. Cards full of glitter, homemade honey and bulbs, trader joes snacks and head scarves all stuffed in colorful packages waiting for me in our mail slot. Cancer certainly increases the amount of mail I get by tenfold, and receiving packages and cards and notes and envelopes full of glitter always makes me smile. More writing and early grey tea with steamed almond milk. Dress up and a polka-dotted dress for dinner on the hundredth floor. Sangria as our restaurant slowly turned in a circle as we gaped at the city full of tiny lights. Cheesecake and dreams for the future.

It was luxury because I felt good. I feel functional. I can think clearly. I can taste the sweetness of this kind of life, where everything feels good. Luxury because I didn’t think about the impending days of horrific illness that will begin Thursday afternoon. Luxury because I could stomach wine. Luxury because I got to spend the weekend with one of my favorite people ever, M. Luxury because Sammy and I could hold hands throughout the whole dinner. Luxury because I couldn’t decide if I should wear the short blue/blonde wig or the long deep, curly red wig.

Cancer makes you stop and think. Cancer makes you wonder, with each big day passing, what it feels like to do something for the last time. Cancer makes me hug my friends a little longer, cancer makes me hold Sammy’s hand a little tighter as we fall asleep, cancer makes me think a whole lot harder about what I want out of my life, however long, on this planet.

As I embark on this next year of my life, I hope I can be present in each moment, even the boring ones. Boredom allows us time to think, and even, time to not think, time to just allow feelings and thoughts and ideas to percolate, to swim through the body, to find a place to take up residence and grow in new and creative ways. I’m looking forward to being present as I finish my Ph.D. and explore ways to sustain myself as an academic and writer, be it as a professor or otherwise.

Tonight as my birthday comes to a close, I also want to say thank you to the many of you have sent texts, hats, earrings, flowers, cards, socks, cookies, tea, well-wishes, snacks, emails, notes, and all other forms of energy and love across the planet to me. Your love and energy is really important to me and I cherish all the support as it comes. Please send lots of good vibes Thursday afternoon, when I have another chemo, and through the weekend, which I’ll spend trying desperately to recover.

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.

Image Image

Sunshine

Today, sunny. Finally. Awesome.

I got up early and I wrote, and I had a orange-berry smoothie that was delicious. I drank it all and it tasted like sweet magic. I it’s got to go to morning yoga, and I could do all the postures, and it was warm and familiar and I felt so powerful and centered. Now I’m sitting in a cafe, without a single commitment to anyone this afternoon. I have the whole rest of the day to listen to classical music and work on my dissertation. Even better, I want to work on my dissertation, and I feel well enough to work on my dissertation. Tomorrow my best friend comes to visit, and it’s supposed to stay sunny.

Remember in the Land Before Time, when Little Foot found that leaf in the desert, with the droplet of water in it? Well, if you also grew up in the 80s and 90s and watched Land Before Time as much as my cousins and brother and I did, then you probably remember. It’s a lovely moment, and he looks into that water in the leaf in the desert, and Little Foot finally has something to drink. Today isn’t exactly like that, it’s just a little like that. It’s a handful of sunshine and feel-good in a place where there isn’t a whole lot of awesome.

Sure, I’m still tired. My stomach turns if I think about the next chemo or whiff the wrong smell. But I feel a thousand times better than yesterday, and five thousand times better than the day before yesterday, and…. Now, that’s all that matters. Feeling well enough to do things I love in the world. Feeling well enough to get excited about the urgency with which my diss awaits. Feeling well enough to hole up in a cafe to write. Feeling well enough to stop and buy the cats treats. Feeling well enough to walk from yoga to the cafe and let the sunshine fall on my freckled skin. Feeling well enough.

So here’s some random wig pics…

Thoughts on Lisa Adams & the Media Flurry

So by now, you have probably heard about this whole Lisa Adams debate. Basically, two married journalists, Emma Keller and her hubby Bill Keller- wrote about Lisa’s awe-inspiring twitter presence (and related blog) with regard to her stage IV breast cancer. Both journalists were critical of Lisa, calling her writing about her cancer and about dying “TMI,” being generally totally tone-deaf, and in my opinion, absolutely missing the point of social media and why someone with a life-threatening illness, indeed, someone with a terminal diagnosis, might put herself and her experience out there for others to witness. I won’t rehearse these amazing critiques, responses, and thoughts on Lisa and her writing, but here are a few great pieces about what has gone down.

The initial articles shame this woman who has boldly, humbly shared her experience of dying. As if her metastatic breast cancer was a dirty, dirty secret she should hide. As if she did something to cause her breast cancer. As if she’s incapable of making her own decisions about what to share in public digital spaces. As if she were a child to be reprimanded for sharing her hurt. As if rupturing the picture-perfect personas that populate digital publics but that don’t really reflect life is a horrendous transgression. As if we were not all responsible for the cancer invading her body, precisely because we’ve not yet launched a massive revolution contra the insanely toxic capitalist invasion of our bodies, our earth, our world.

I was floored to discover Emma Keller, the initial writer, herself had breast cancer. How on earth…. I thought, and then, suddenly, it all made sense. She’s probably deathly afraid of a recurrence. Simply terrified. And there is Lisa Adams, blogging and tweeting away, the embodiment of exactly what she hopes to never be. She probably wants to run in the other direction, forget it ever happened, refuse the possibility. It would have been better if she just turned off her twitter feed.

The thing is, we live in comfortable la-la-land about breast cancer. Everything is happy-happy pink, people call themselves “survivors” (I just can’t get on board at the moment- it seems to imply that other people had to die so the “survivor” could survive those other, dead people. Can’t do it.), and we have celebratory walk-run-things in which we gather girlfriends, wave pom-poms, and adorn ourselves in clothing, makeup, and all kinds of decorations that come from the companies that produce the very toxins linked to breast cancer. It’s a la-la-land.

No one wants to know about the deaths, no one wants to hear about the treatments not working, no one wants to stare down the statistics and imagine themselves on the wrong side, no one wants to sit and listen to what it’s actually like, pom-poms and survivors aside. Lisa Adam’s tweeting ruptures the la-la-land. It’s public. It’s not pink. There’s no pom-poms, because, in fact, she’s dying. It’s not exactly something you can cheer on, there’s no “surviving.”

You might not hear these stories. I hear them everyday from other young women with breast cancer, from women with breast cancer in all different stages. I hear about, and feel the constant pressure to smile and say its “getting better” and that we’re “making it through.” I hear about, and sense, feeling alone in the midst of a crowded room, even when there are people bringing food and texting hearts and offering to be appointment assistants. I hear about and tango with the fear, the sadness, the horror that is not pictured anywhere, not reflected at all, except in the eyes of the other young women I know, who speak the language of chemo and hormone status and nausea.

Maybe the first writer, Emma, and her husband desperately need to convince themselves that what is happening to Lisa won’t happen to Emma.

The other day, I met a young woman with metastatic breast cancer. She’s the first person I’ve met who has metastatic breast cancer. We both attended a yoga class for young adults with cancer. She’s just like me. We were born the same year. She has a job and a fiance and dreams. And metastatic breast cancer.

I’m certain my eyes were wide. Inside, I gasped. My stomach churned. I desperately wanted to believe it wasn’t true, couldn’t be, impossible. I hoped it was a garish, ugly cancer joke. I would have done anything to make it not real, this young woman, standing in front of me, chatting about hormone status and chemo hats and oh- metastatic breast cancer. Anything. But there she was, with me, on the same road as me, attending the same yoga class as me. Nothing is permanent. Not her, not me, not the yoga class we attended. And so we sat and talked in that comfortable room with the high ceilings and drank tea, and there was nowhere to go.

I think Lisa Adam’s social media presence and the flurry around it should be a wake-up call. I think it should jar us out of the la-la land. I think it should make us think what might happen if we took her seriously, if we stared the stats in the face, if we got really up close and personal with death.

I’m afraid, though, that like so often on social media, the flurry will pass, and we will move on because we liked, shared, commented, participated. And Lisa Adams will still have metastatic breast cancer, and chemotherapy still won’t work very well for lots of people, and I will keep meeting young women with cancer, and some of them will have metastatic breast cancer. I don’t want it to pass. I want the flurry to come with us into the future. I want the flurry to grow. I want the flurry to be angry. I want the flurry to scream and shout and writhe and be black and ugly and angry. I don’t want it to be just a flurry of feeling. I want it to be a storm that doesn’t end until we actually deal with breast cancer. And all the other cancers. Then the flurry can die down, when there is no more cancer.

sick

After each chemo, I become what I think most people envision when they think she has cancer: very sick.

I sleep twelve hour nights. I watch movies. I cannot decide sometimes whether I am insanely hungry or horribly nauseated. I sip ginger ale and suck on ginger tablets and wager if I can get buy with less of the dreaded steroids that make me feel so jittery. I wear pajamas all day. I take long naps. I ask Sammy to buy out ginger-chew Gravol (like Dramamine) at the drug store. I marvel at how much my bald head looks like an alien in the mirror. I eat apple sauce and frozen grapes, and sometimes plain rice. I have zero desire to cook, though I’m always trying to think of other easy-to-prep and easy-to-digest options.

I had chemo Friday. I even start to feel sick just thinking about it, it’s that awesome. I’m immediately OK after chemo, but it doesn’t last long. Soon after, the blood drains from my face and I turn ghostly pale. As I’ve gone through the treatments, this happens faster and faster. After the first chemo, I woke up the next morning and went to a dissertation committee meeting. Chemo numbers 2 and 3? Definitely sleeping the next morning.

The sick feeling generally lasts four days. The first day, my pee is the color of koolaid, like the cocktail they inject with me. After that, I’m left to lull around in a half-awake, really-yucky state for a few more days. On the fifth day, I’m still very tired, but I can creep out into the world, and kind of pretend I’m healthy. Then I have some really great days to write my way out of five lost dissertating days before chemo again on day 13. Those are the days people generally say, “Wow, you look so good!” Trust me, I don’t look good on the post-chemo days, but thankfully there’s a bit of a reprieve between the infusions.

I’m already dreading January 23, the next chemo, though I imagine afterwards I can cautiously celebrate that Jan 23 will be the last of the cocktail that causes flu-like symptoms, before I switch to one that folks describe as making you feel like you “have a really bad cold.”

So that’s chemo for you.

Dear Doctor Gray-Hair

Dear Doctor Gray-Hair,

My oncologist is Doctor G.. She is in charge of the team.

If you are not Doctor G., and especially if you are seeing me when I expected to see her, then don’t expect me to trust you because you wear a white coat and someone told you to look me in the eye. I can tell that’s a practiced skill of yours, Doctor Gray-Hair. That’s another thing, I’m plenty capable of understanding what you said without you speaking ever-so-slowly. I’m a grown woman, and I nearly have a Ph.D.. I can toss around big words just like you can, so talk to me like a big girl. Sorry if all this pink frilly crap made you forget you’re actually treating someone who hasn’t played with Barbies in decades. Get a grip. And throw out the pink while you’re at it.

Now, about big girls: we have questions. Sometimes, they pop up before the chemo begins. Sometimes, they pop up in the middle. Sometimes, they pop up after the chemo. Regardless, they pop up. I did my research. I continue to do it. I have more questions. I’ve listed them out for you. When I ask you to answer them, don’t busy yourself checking my lymph nodes and brush me off. When I ask where my oncologist is, don’t pretend the question is a silly one, and answer it by telling me that she will see the paperwork and that I might not see her when I come in for these pre-chemo appointments. Doctor Gray-Hair, when I protest, don’t assure me you, too are a medical oncologist. Don’t tell me that’s how the system works. It’s not working for me, so fix it. Don’t pretend it doesn’t matter that I’ve never met you, Doctor Gray-Hair. It matters. When I ask you a second time about the relationship between hormonal therapy and scoliosis and menopause-like symptoms affecting my back, don’t tell me I would have gone into menopause at some point in my life anyway. It is a horrendous answer. My appointment was with Doctor G.. When I try to ask my questions yet again, don’t tell me this is a check-in appointment to “T-up the chemo” and that questions should be asked before chemo or when chemo is complete. When I ask my questions a third time, don’t tell me not to compare myself to others. I can figure out to what standard I will compare my treatment. Just answer the goddamn question. Following up by then asking if “whatever is urgent” has been covered is not good enough. When I ask again to see Doctor G., and when I roll my eyes at you because of your dumb answer, don’t tell me that you’re “part of the team.” I’M THE TEAM CAPTAIN AND I GET TO SAY WHO IS ON MY TEAM AND I HAVEN’T EVER SEEN YOU PLAY BALL. SO NO, YOU’RE NOT ON MY TEAM. Don’t tell me I need to get used to seeing other doctors when it’s clearly causing combustion. Don’t make me feel like I’m asking for the world to spin the other direction. It’s a pretty bad sign when I start rolling my eyes. You’ve made me feel entirely unstable Doctor Gray-Hair: I don’t know why treatment decisions were made, and you are not answering my questions. That makes me feel a whole lot worse. Exponentially worse. I don’t care if I have to wait. You might not know, since we never met when I had hair, that I’m a redhead, and that sometimes I have a temper to match my hair. I do not like you Doctor Gray-Hair, and I want my oncologist, and I want her now. You did a crappy job with my questions, you talked to me like I can’t possibly understand my treatment and my doctors’ decisions, and you did not make me feel confident about what is going to happen next, in fact you’ve made me insanely terrified about this whole, entire thing. So send me MY oncologist and get the hell out.

Now let me tell you, dear gray-haired doctor, what happened when Doctor G. walked in. She realized how upset I was. She asked what had happened. She gave me a hug. She apologized for you saying this was not a time to ask a whole lot of questions. She said I’d never see you again. She reminded me I could call her anytime. And then she took my list of questions and answered them in detail, one by one. She told me about the oncotype test and why its irrelevant for me. She explained the latest research on chemo, hormone therapy, and scoliosis. She assured me this was the right course of action. She told me to try the marijuana for the nausea because it couldn’t hurt. She discussed the new radiation study for women under 35, and the new study about giving women under 35 shots to stop our periods in addition to tamoxifen, after chemo. She asked if I had any more questions. She made sure I knew I could call her directly in case anything else came up. She gave us both hugs and said she’d be sure she saw me next time.

End of story. You see, Doctor gray-hair? Just a little information and something called respect, and we’re all fine and dandy. But that’s why I see Doctor G.. She’s one of the smartest, most compassionate doctors I’ve met. You can tell she cares, right away. And you can tell she is absolutely up to date on all the research. She makes it very clear she’s in charge, and she’s got everything under control, and that I can trust her. That makes me relax. She exudes competence and caring at the same time. It’s not hard, Doctor gray-hair. Just be nice. Be compassionate. And don’t expect me to trust you just because you have the same letters after your name that Doctor G has. I’ve never met you. Learn how to trust-build. For goodness sake, do it for the patients that are yours.

Sincerely,

Chelsey