cancer and my ’90s phone

Many of you know about the phone dramas I’ve had lately. First my iPhone died, and so i got a new iPhone5. Six weeks later and 3 weeks into the cancer diagnosis, my phone slid from my back pocket into the toilet bowl, where I peed on it. I only wondered where it was when my mom Facetimed me and it became to ring— from the toilet bowl! I fished it out, but it was too late.

Luckily, Sam had convinced me to buy the insurance, but the phone still took about 10 days to be replaced. In the interim, I have been fielding phone calls from what feels like hundreds  of medical professionals, and I have been doing this from the cheapest replacement phone I could buy: A FLIP PHONE. It has felt like the late 90s and early 2000s.

And there has also been something strange and almost sensual about the tactile sensations I get from this phone. It’s so hard to send texts because I have to click through all the numbers, and it makes these loud beeps when I hit keys, and has ring tones that could only belong to the first few cell phones I owned when I was 17, 18, 19, 20. Sam can even play whole songs on it– this morning at the doc’s office he made me smile while they fished through my bruises for a suitable vein to draw blood by playing “Jingle Bells” and “Mrs. Robinson” with my sexy little flip phone. Only a really musically talented pareja can do that.

Cancerland is not-time, out-of-time, a foreign time. My little black flip phone fit perfectly out-of-time in this f*cked up world.

In her article Living in prognosis, Lochlain Jain writes:
“for one thing, living in prognosis severs the idea of a timeline, and all the usual ways one orients oneself in time: one’s age, generation, and stage in the assumed lifespan……………Living in prognosis, then, is about living in the folds of various representations of time.”

The phones, side by side, for me are these folds of time. I wish when I had my first set of flip phones, I’d found this lump. Known then about this cancer, for surely when I was still delighted about my little flip phones there were cancer cells lurking in my left breast, sliding around in there, waiting until I discovered them. Most breast cancers are around 2-10 years before you find them.

“Cancer is creepy. After it shows up one realized that it must have been there for a while, growing, dispersing, scattering, sending out feelers and fragments. After the treatments, often one hasn’t any idea if it is still there, slinking about in organs or through the lymph system- those parts of the body you can’t really even visualize. But the apparently definitiveness of the prognosis, which seems at first counterposed to the unpredictability of the disease, can be as mysteriously tricky as the errant cells.” -Lochlainn Jain, Living in Prognosis

I wish I knew why. Was it the scoliosis X-rays? My mom swears there were only 4, and judging by the fact that she has in her possession all of the X-rays I’ve ever had since I was 8, with the exception of an ankle X-ray I had at 25, she’s probably right. And so its tricky to treat- should I have the other breast removed, it, too, tainted by the radiation they used to monitor my curvy, curvy spine?

 “Because cancer is always about time. Its progression is marked by stages the staging is not exactly arbitrary, but neither is it terribly precise….. Cancer spreads over time, but no one knows how or when: it is possible to have metastasis after Stage 1 cancer, or none with Stage III. But no matter one’s stage, virtually everybody wants to have been diagnosed sooner”  -Lochlainn Jain, Living in Prognosis

I cannot stop thinking, about this old phone device- that’s also new to me-  and this newer replacement, and the different times they represent in my life, and my different relationships to them, and the way my entire sense of time has radically shifted since Halloween, when I found out I have cancer. It’s the 90s and the now, it’s a recalculating of now and the future, its slipping between these building blocks that were built out of big, sturdy logs and that were the structure I stood on, I understood, I oriented to. I could see for miles, months, years into the future. In that future, I saw myself as a professor, a lover, a mother, a public intellectual, an artist, a Bikram yogi. It’s as though now, the logs are floating on water. They are slippery, moss-covered, and beneath me there are depths unknown. And in my hands, are these phones, a hot pink iPhone5 and an old-style beeping flip phone.

 

cancer girls group

I went to the Rethink Breast Cancer group tonight. It was weird.

Everyone was so nice. There was probably ten women there, all in their 30s and 40s, and while they were still mostly older than me it was really OK to be surrounded by women close enough in age.

It was just so strange to recognize myself , and to be recognized by others, as part of a community of young women living with and after breast cancer. Everyone else was already through, I guess I was the only one with, and they were all after. They gave me lots of tips about getting through, and were so kind, and offered a completely different kind of support and space than others who have not ever had cancer can offer. Both are valuable.

Truth is, though, I wanted to bolt. Run in the other direction so fast that I’d be a blur, and nothing about that blur would scream cancer. Just a blur no one could read. Being read in the world as having cancer is extraordinarily unsettling. Relative young-ness and breast cancer were the organizing mechanisms that brought this group of young women together to discuss turmeric and lemon water and buying olive oil in dark glass bottles.

I don’t want to be organized near, by, or with breast cancer. And that, my friends, is the sticking point. I don’t want someone to call out cancer to me, I don’t want to be able to answer the cancer call. I don’t want to be recognized as having cancer, doing cancer, knowing cancer, being cancer. And at the same time, I also feel the polar opposite. I want to sit in this room with women with breast cancer and drink tea. I want to stare into their eyes and see what I find. I want to listen to the stories. I want to be in a place where cancer things are made for young women. I want to nod knowingly. I want to trade stories and ask questions of these women who look like me. Who’s lives are kind of like mine.

And also, I don’t want them to ask. I wish it was already over. I squirm when they ask about stage and chemo and wigs. I hate recognizing the knowing look in their eyes, when they learn I’m newly diagnosed. I know they know, and their knowing makes my knowing more palpable. I can fool most people. These are not women who can be fooled.

I desperately want to be there. And more than anything, I wish I could un-do that want.

the flip side

As a teenager, I was pushed to volunteer. It was required for school. It was required by my parents. It was just something I had to do. I volunteered at a crisis nursery, watching the toddlers of young women who needed a break presumably because they were in crisis. I volunteered at an animal museum, feeding little raccoons with baby bottles and dropping dinner into the beaks of baby birds fallen from nests (we all know what that lead to). I volunteered at a women’s center in college, a gender/sexuality rights organization during study abroad, and also during college, at a Day Laborers’ Center. And in the following years, there were girls groups and food drives and all kinds of volunteering.

Participation in the public sphere— I did lots of it. My kind of participation was exclusively from the giving/volunteering/programming/providing perspective.

Sure, I participated in girls/tech groups as an adolescent, but I was never the most marginalized in the group, and there was always someone else it was helping and I was always encouraged to make sure those others were helped. I cannot recall a time when I was on the receiving end of these kinds of services: my community has never been offered AMIGOS volunteers and I have never been offered a bag of donated food for the holidays.

Enter cancer.

Now that I have a life-threatening disease, I am eligible for all kinds of services. Acupuncture. Free wigs. Support groups and buddy systems. Counseling. Massage. Prescription pay support. River rafting trips. Young cancer bumper stickers.

And suddenly, I want none of it. I know what they say, the volunteers/programmers/givers/planners/providers/organizers, and I know what they say because I’ve probably said it. They question why I don’t want the services. After all, free wigs, that’s so great— why would I pay? And river rafting, how could I not want to go? What about support groups and buddies- I need that!

It just kind of rubs me the wrong way, the people standing behind the table with the hats for people with cancer. Hand-made. Of course. They don’t have cancer.

I am annoyed when the people pairing me with a young cancer buddy want me to recount my life story on the phone, and want to discuss the details of my diagnosis. I’ve never met these people. Why would I bare my soul? I can hear her though, waiting for me to answer the questions with more words than I have so that she can “match” me. My answer is too short, the silence screams across the phone line. As though she could ever know me well enough to “match” me from a phone conversation. So why bother? Any cancer buddy will do. I don’t need to recount my life story, and frankly, it’s intrusive. I can tell she is wondering why I’m not more forth coming. After all, she’s a “good one!” She’s “caring” and says all the right things. Yet, there’s no pause to consider why they actually need to know all this information in order to “match me” with a “cancer buddy,” or to consider the fact that maybe I didn’t want this phone call.

Even so, I really like my cancer-buddy. She doesn’t do any of these annoying things the person who matched me with her does. But then, she had cancer. It’s entirely different.

I can still pass as not-having-cancer. In the hospital, as I walk by the tables of hats and blankets that are for chemo patients, I know they don’t think to offer them to me. I don’t yet look unhealthy. I keep my head down, and keep walking. It’s like being outside of my own skin to be the one to whom the service is actually supposed to be offered, especially when I’d never be recognized as such, at least for the next few weeks until I’m bald.

a plan!

OK, there’s a plan.

Today, I had lots of appointments. Sammy came to the one in the morning, with the surgeon. She’s making things happen with test and decisions and appointments. Then my dear friend A came with me to the one in the afternoon. She had to skip some meetings and take the afternoon off work, but she did and I’m forever indebted. I put down her relationship to me as “bridesmaid” and she rocked it. She asked questions and everything. Then we had lots of falafel and sorbet. Which fixes everything.

Besides, I don’t feel like too much needs to be fixed. I think mostly, we’re on the right track. I trust the doctors. I feel like they know what they are doing. Things are moving. The waiting is nearing an end. And what I’m really bad at, anyone who has worked with me knows, is this thing called patience. I always told my mother it was a virtue I didn’t have when she recited that whole “patience is a virtue” thing to me when I was young.

Everyone is so worried about my emotional health right now. I’m really OK today. I’m actually delighted there’s a plan. I’m not as fragile as you think, promise! Sure, sometimes I get frustrated and upset and pissed, but then I make charts and go to yoga. Sometimes it feels awful, but right now, after the day of appointments I have so long awaited, I feel ready to do this. Bring it. I think I have bad-ass doctors, and there’s a rock-star resident who, when she interacts with my medical oncologist, who is her supervisor, makes me smile because, A and I both agree, they’re kind of like me and my PhD supervisor.

You know what this approximates? One time, a long time ago, I was an AMIGOS Project Director for the third time, and I was ecstatic to be living in a yellow house across from the mayors office in Boaco, Nicaragua. That was even our address, “Yellow House in Front of Mayor’s Office, 2 Blocks North of the Central Park.” It was one sunny morning, and I looked outside and saw a bunch of people with a) big machine guns and b) big cameras. So obviously, I thought, a movie! They must be filming a movie! We live in a film set!

This part is when like they thought the cancer was a pappillary lesion. Grossly wrong, in both cases, but in both cases, seems totally benign to either have a lump in the boob or lots of men with machine guns and movie cameras on the front door step.

So, off we went, my APD on errands and my SPS (who is now a Regional Director! boy am I proud) on community visits. I had the whole house to myself, except for a pukey volunteer and a baby bird I was feeding with an eye dropper. That’s when the shit started to hit the fan. First the sketchiest hotel man ever called to tell me to get the hell out of the house. Then I peeked outside again, and knew it really wasn’t a movie. There were rubber bullets, trucks full of men in black gear, and hundreds of protestors. And guess what was right smack in the middle? The AMIGOS staff house. You betcha, we got front row seats.

This is kind of like when they had to do the surgery for the lesion. I thought, we can deal with this. It was a front-row seat to what cancerland looked like, but not actually, cancerland. I’d never even been in the theatre, and this was like a sneak peak.

So I bundled up the volunteer, and gathered various electronics, and told the volunteer to hold my hand and keep her head down. We were about two houses down when I realized I forgot the baby bird, so I had to bring the volunteer on a u-turn to get the baby birdie. Once we had safely tucked him into my purse and also realized we should bring a change of clothes, we did the whole hand-holding-head-down-sprint-down-the-street-and-try-not-to-see-the-rubber-bullets-or-machine-guns. We holed up in the sketchy hotel, some staff and more sick people joined us, and waiting ensued.

There’s lots of waiting in cancerland.

Then things started to go sour. People got dengue. We couldn’t get our cots. The protests worsened. The SPS saw a man got shot and we had to pile up in taxis and leave town without clothes or cots. I have a vivid memory going down the mountain behind another cab full of staff and volunteers with dengue, and because we had worked all week to throw a suprise birthday party, we were carting a pinata, and staring out at us from the back window of the cab was that spiderman made out of crepe paper, his body filled with candy and his eyes blank out the window.

That’s like when the doctor called me to tell me the biopsy was positive. Scary as fuck, and I was entirely unsure how we would fit all these people in Maribel’s 2-bedroom home, where we were headed. And also, some weird black humor. The spiderman pinata.

We had a party in her house, with the pinata, and slept five to a bed and the bed broke in the middle of the night.

Like when A and I decide to eat lots of ice cream and get boudoir photos taken before the surgery.

Sometimes things got bad, like when I couldn’t admit we would actually have to live in Teustepe (believe me, not good) and we had nothing in our house with dirt floors and a latrine except for a few cots, and S had to come and break the news in person.

That’s like when I just kept hoping I’d wake up from this terrible, terrible nightmare.

But eventually, we got some plastic chairs, and I learned to love our outdoor shower, and the latrine wasn’t that bad (in retrospect), and I learned all the things on the menu at the only restaurant, and at least I was in the same town as Maribel.

So, that’s like now. I have a plan. I have a team. Things will happen. I have a nutritionist and multiple oncologists and a personal trainer and a special nurse.

It’s not like I really have a choice about this. I need the chemo. I need a wig. I need a mastectomy. I need a port in my chest and a hundred blood tests and another biopsy. I need big earrings, soft hats, and new jammies. I need to write like mad RIGHT NOW because I need a draft conclusion. That doesn’t make me brave or awesome or emotionally unstable or in denial or anything. It just means I have to do what I have to do and I have to do it now. It’s really the same as the “movie that wasn’t a movie” in Boaco. We just have to bundle the kittens, and run like hell.

And I never want to leave Canada. Like, ever. Everything is paid for. There’s no co-pays. It’s really really good.

Plus, I’m part of a study that entails me getting a personal trainer. And they love that I do yoga. And I can swim with the chemo port. Any my boobs will be perkier than everyone elses when I’m old, because they’ll be silicon, and they’ll be tattooed brightly with california poppies and dandelions.

some information, soon.

I am so relieved to have many major, informative appointments tomorrow. I just thought I’d share what prepping for these things means, for me. I’m sure lots of people have very different ways of getting ready to attend these appointments where they will receive a lot of information and make some very serious decisions about surgery, treatment, and the like. My way of prepping for these things is to gather as much information as possible. I will read anything. I search for everything. I read everything that comes up in google, until all the links are purple. My medical vocabulary has seriously expanded in the past few weeks.

Our very, very kind fertility doctor (more on that whole situation later) who I think is The Most Awesome, told me I’m the most informed patient he’s every had! My research skills are paying off, folks. For everyone who’s ever said doing a Ph.D. is not worth it because there’s so many more Ph.D.s than jobs,  (a whole different topic), they were wrong. They were wrong because obviously, I would never have these kinds of research skills without also almost having those three letters behind my name. I also would not have access to the databases, where I do all this research. So, yes, indeed, a Ph.D. where you study youth/media/poststructuralism/feminist theory/globalization actually does, indeed, give you insanely critical skills you can use when you have cancer. My research skills have served me well. I have read a TON of articles about young women and breast cancer. I even made a bibliography, just in case they ask where I got this information (which, I know, they won’t).

Once I have enough info (well, there’s never enough, but at some point you have to stop) I then organize everything into topics and questions and notes to discuss with the doctors. And of course, I print these things out, both for my cancer binder (which has a parallel digital format) and for my trusty appointment buddies, who are just amazing. And so nice about my totally anal need to organize information, re-organize information, find more information….

Tonight, it looks like this:

Image

on telling

I’ve been thinking a lot lately about telling.

Telling people I have cancer.
Saying those words, letting them fall onto others’ ears and into others’ inboxes. How weird it is to say, “I have breast cancer,” how strange those words sound as they roll around in my mouth.

There’s really no way to soften it. No way to tell it easier, to tell slowly, to only tell a little. At some point, you kind of just have to say “i have cancer,” and let what will happen.

Mostly people are insanely nice, so kind, so full of love and worry and concern. You guys offer to take me to lunch and to do whatever I need (though I don’t know what that is right now), and you give me your sleeping pills and say you’ll teach me how to smoke weed (I’ve never been very good at it or liked it very much) and you bring over ice cream and text like crazy and tell me we’ll get through this, and that we’ll just deal with what we have to deal with. The we is really good.

It’s still anxiety producing, though, telling. It breaks the surface chatter, silences the laughter about nothingness, produces black humor about cancer and death.

There’s not much to be done. The only thing I want to be done is for a fairy or a witch or a genie to appear and to make it go away, to wave a magic wand and be shaken awake from this nightmare. (certainly, soon enough there will be actual things I need, actual support people near by can provide, like after my surgery and during chemo). The nightmare feels like being stuck in the dark swimming pool waters of a big pool after the covers have been pulled. Truth be told, I don’t know what that feels like, but I imagine it feels like this. As a child, I used to be so afraid of getting stuck under there. Probably, that was just the fear instilled by endless coaches warning us not to play under the tarps, where it is dark and black and easy to get confused about which way is up, and hard to break the seal between water and tarp, and let air in.

Telling is like admitting someone got stuck under the tarp, we weren’t careful enough when we pulled it over the pool at nights end and there’s a feeling of horror and dread, knowing that someone (could have) gotten under the tarp, stuck there, overnight. That’s how I think it is for the people I tell. I’m the one under the tarp, the one no one wants to be, the one who didn’t kick fast enough or scream loud enough when the tarp was pulled.

I’ve told most people now. College friends. AMIGOS friends. PhD friends. “Home” friends. I only had to tell my Mom, and she told the rest of the family.

Now, those other people. The ones you run into at the grocery store or yoga, who ask, “how are you?” These everyday conversations do not have the capacity to handle “I have cancer.” There’s not enough room. What would you say, to someone who said that to you as you dropped something off at the postal office? Nothing, you can’t. There’s no room. Since there’s no room for “I have cancer,” I have to tell some other version of my reality. Everything else feels like a lie, but mostly, “I’m great, thanks!” feels like a big, giant, charade.

Then there’s the people who I see all the time, and who are in my lives for various reasons. Fellow young academics who wonder why I’m dropping out of the conference panel we were putting together, when I normally organize these things. Others who would never wonder, never imagine something so horrific, like professional contacts and the girl who paints my toenails and the hundreds of AMIGOS youth I’ve mentored over the years. Then there’s the people who will soon know, but who I’d rather not tell- academics at UBC, other students who I see around, yoga teachers who’s classes I frequent, the people in my building. They’ll all know at some point. Cancer is news, cancer is news that spreads. And soon enough, it will be wildly public. My bald head will be a public signifier. But until then, telling is such an odd way to be in relationship to other people, to the world, to myself.

old friends

At some point in life, some friends become old friends. It’s not really based on time. It’s not about how many days, months, years have passed since you first met, or about the times you have had dinner or gone to yoga or shared a book. It’s more about the thickness of the bond. It should be slow and viscous like molasses, and it should sparkly in the sun and be deep and dark and full of knowing at the bottom. Sometimes you need lots of dinners and late night chats and swim meets to grow a thick bond. Sometimes you need much less, just a few text messages and late night escapades and some shared experiences.

Many of my college friends are old friends now. K is one like that. We spent lots of time making our bond big and thick and real and full of love. It grew during late nights at Pitzer college, while we ate spaghetti could only be described as “soooo spicey” in the dining hall, and during swimming winter training (I don’t think we’ll ever be in such shape again. We literally swam all day for weeks).

And so K, lovingly called Bebe K because she was just such a goof in college and a year younger than the rest of us, was really an amazing person to spend the weekend with. She came up from Seattle. We walked all over Vancouver. She practiced her natural medicine back-cracking techniques on me. We got foot massages and ate out a lot. Bebe K knows a lot. She’s finishing up med school (woohoo!) and she’s pretty much a rockstar, and she kinda already speaks the breast cancer-well, the medical- language.

It was really, really good to sink into the old friend bond and settle in there for a weekend. It’s easier to breathe there, when you’re sharing space with such an old friend. We can talk about cancer and not-cancer in the same sentence, and it doesn’t matter. There are old memories, and new ones to make. There’s a sense of all being well, the world being right, when you get to snuggle into those spaces and decide to stay home and drink cider and back-crack and gossip late into the night instead of going out to see flamenco. It’s gloriously comfortable. She can ask, “Are you scared?” And I can answer “Yes,” and we can talk about something else, and come back to that. Or not. It’s easy. And its lovely. And its exactly what I needed this weekend.