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Tuesday, May 25, 2010

Being back & more appointments

Well I've been back from Ocracoke since Friday evening and it has been a whirlwind of activity -- Ashley & Phil's wedding to attend on Sat., old friends to get back in touch with, BBQs, games of mah jong, the finale to the series LOST (and just for the record, I did not like it but it's hard to end something so epic) and of course prep for wedding and chemo.

There's not much to report on the cancer front--a few friends have asked if I have been feeling any ill effects from having cancer. And I haven't--all the after-effects have been due to treatment like the biopsy and surgery--in other words, I had pain after surgery (which is to be expected) and I'm still a bit sore but otherwise I'm fit as a fiddle--or feel fit as a fiddle. Whatever microscopic traces of cancer still in me that the chemo is going to eradicate (and hopefully eradicate all of it) I don't feel.

Anyway, I have an appointment to see my oncologist, Dr. Lisa Carey, next week Wednesday June 2. And then the following Tuesday, June 8, I have an appointment for a quick outpatient surgical procedure for them to put in a port by my collarbone so that on Thursday, June 10, when I start my first double-dose of chemo (they always double-dose you for your initial appointment) they can use the port for the chemo rather than stick me each time. And then it's 2 weeks off and 1 week on for the chemo schedule--which I should have confirmed by next week.

So that's all for now. Probably won't write another post until after my meeting with Dr. Carey on Wed. And when I do I promise to include photos from the wedding--esp. ones of my hair--the photographer we hired has promised to take lots and lots of photos of my hair since in about 3 weeks it's going to be gone...

Tuesday, May 18, 2010

Why I hate pink ribbons or how the personal became political

So I got the test results back from my geneticist: negative-negative, for BRCA1 & BRCA2. When I talked with her over the phone she said that this was very good news because it means that they don't think I will develop ovarian cancer from this cancer and because the kind of cancer I have is not genetically transferable, it means that any daughters or granddaughters I have will not have to worry about being susceptible for breast cancer.

I thanked her for explaining the nature of this good news, but I also told her that while I appreciate that I may not be at greater risk for ovarian cancer, the truth is that genetics is a new science and there very well may be a genetic link in my family in terms of breast cancer (with 3 aunts you have to wonder) and that with the high rate of colon cancer in my family, I have other things to worry about in terms of a different kind of cancer one day appearing and just having breast cancer leaves me feeling vulnerable to metatacization in the future. As for not passing it on to any future daughters or granddaughters, well, that is a moot point since we won't be able to have children after the chemo treatments are over.

I said all of the above not in an angry way (although lets face it, I'm sure I came across as edgy because the content is edgy) but as matter-of-factly as I could because I am in a matter-of-fact kind of place. Actually, I'm lying. I'm angry. I didn't want to get angry with the geneticist on the phone--she was just doing her job and was trying to convey to me that these test results were good news for me. And I suppose if I had daughters or granddaughters, I would be comforted by that news. But since fertility stuff is one of the angry-making things about the cancer and chemo, it became another reminder of things needing to be readjusted in my life.

So that takes care of the medical part of this post. I did talk to the nurse oncologist who is supposed to be guiding me through this process. I think she's a bit annoyed by me--by the email messages and my constant questions (because lets face it, I have a lot of questions) and my desire to figure out when this will all be happening--to know how and when and why and where. I don't know whether I am anomalous in my inquiries and desire to know. Perhaps most women accept their doctor's prognosis and are content with just waiting and adjusting their schedules at the last minute. I can't believe that I'm alone in wanting a timeline and to know exactly who I will meet with and how long the treatment will last and where it will all take place. And yet in talking to the nurse yesterday on the phone I felt like she kept saying I'd have to wait to talk to Dr. Carey (who, by the way, does not provide her email, smart doc--guess she knows her patients would be hounding her all the time). Apparently talking to Dr. Carey won't happen until Thursday, June 3--but I have to wait for another woman from Oncology, the "scheduler" to call me to confirm my appointment with Dr. Carey to make a "plan" and then to figure out which day of the week, Wed. or Thurs., I will have my once-every-two-week-four-to-six-hour chemo appointments.

So the remainder of this post is going to be about why I titled my blog, "No Fucking Pink Ribbons." And yes, I'm not including the little asterisks--I didn't think Blogger would let me say "fucking" in the title of the blog but in this post like in others, I swear when I feel it is appropriate. If I offend anyone's sensibilities, I do apologize, but the truth is, even before I got angry about my cancer I really liked the word "fuck"--I mean, it is my favorite swear word (I bet many of you like it too!) and has a multipurpose multi-functionality that I've always appreciated. It can be a noun "dumb fuck," a verb "fuck you," an adjective "fucking jerk," an adverb "fucking tired," and of course, an expletive "FUCK!"

I must confess something: I did not revolt against the pink ribbon until the day I entered into the UNC Lineberger system--the day I attempted to get a biopsy of my left breast. That day, the day I'll call the clusterfuck day, was one of those days when nothing goes right. We all have those days--you just miss the bus and have to wait another hour for the next one to arrive. And you're taking the bus because your car has a flat tire/engine won't start/keys are locked inside. And it's raining and your umbrella is broken so you are holding up one end of it while a car comes by and splashes a big puddle of water all over your brand new suede shoes.

Anyway, the day I attempted to get a biopsy done, I was led into a patient room where I passed by a totebag with a pink ribbon emblazoned on it, and as I entered the room I muttered "I fucking hate those pink ribbons," to which the nurse I was with paused and said, "I'm sorry, what did you say?" And I said, "Look, if it turns out that I do have breast cancer, I am NEVER going to wear a pink ribbon." Luckily she laughed.

I think about that visceral reaction--and this was before I had the biopsy, before I got the news that it was cancer, and well before learning about the cancer in my right breast or the future with chemo and the choice I'd make about the bi-lateral mastectomy. I had never had that reaction before to the pink ribbon. In fact, I had purchased a whole sheet of stamps from the post office to support breast cancer research.

Matthew purchased a keychain with a pink ribbon logo on it and gave it to me because he knew I had aunts who had breast cancer (and he has a pink ribbon tie for the same reason--a tie, he now says, he will never wear) and I have a pink golf glove and pink golf balls that were given to me as a Christmas gift from Matthew's sister because she knows how much I love golf, pink is her favorite color, and she also wants to support breast cancer research. And I have purchased the more expensive flower arrangement for an aunt who had breast cancer because it had the pink logo on it and Proflowers said that 10% of proceeds would go to breast cancer research (the flowers were, of course, pink--but at least they were those nice lilies--the ones they call "Oriental" but for obvious reasons, I find that problematic as well, although technically of course objects can be and are "oriental" whereas people: never).

So why, when faced with the reality that I may be one of those who has breast cancer, did I rebel against the pink ribbon? Why did I have such a visceral reaction?

I think on some level, even while purchasing that pink floral arrangement and the stamps, I knew that all of this is for show or that it's a smoke screen for the bigger issues that are masked by the pink ribbon symbol. I mean yes, breast cancer is not an automatic death sentence. And like with all cancers, there have been tremendous gains made in terms of research and knowledge and drugs and treatments. However, there's still a reality of death that haunts anyone who has received a cancer diagnosis. Just yesterday I was reading an obit for Lynn Redgrave--she died a few weeks ago but I was catching up on my magazine reading and it was only in reading her obit that I realized she died from breast cancer--she had been "battling" the disease for 7 years, according to the obit. And she finally "succumbed" to the disease.

That's the reality that the pink ribbons mask. At the end of the day, despite all the treatments and surgery. No matter how many Avon walks you participate in, how many yoplait yogurt lids you mail off, how many buckets of chicken you eat, how many stamps you purchase or pink sweatshirts you don, at the end of the day women still die from this disease. I may die from this disease. I am going to endure months of a chemotherapy treatment so intense that my hair will fall out, I will more than likely develop mouth sores, I am supposed to avoid knifes and other sharp objects because my blood will have problems clotting and I could bleed out, and there are numerous other side effects too personal to get into.

And all of this makes me angry.

The whole cult of perky, positivity that the pink ribbon symbolizes makes me angry. And I was made even angrier after reading this book, Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy by Samantha King (shout out to Sarah and Jeremy for sending the book to me and Matthew--the author and Jeremy went to grad school together). The book is a must read for anyone interested in the politics of philanthropy, in general, and in cancer philanthropy, more specifically. It charts the problematic nature of raising funds for breast cancer and the breast cancer industrial complex that has emerged. In particular, I found this to be most egregious:

"National Breast Cancer Awareness Month (NBCAM), founded in 1985 by Zeneca (now AstraZeneca), a multinational pharmaceutical corporation and then subsidiary of Imperial Chemical Industries, is possibly the most highly visible and familiar manifestation of this alliance [large corporations, major cancer charities, the state, and the media]. AstraZeneca is the manufacturer of tomoxifen, the best-selling breast cancer drug, and until corporate reorganization in 2000 was under the auspices of Imperial Chemical, a leading producer of the carcinogenic herbicide, acetochlor, as well as numerous chlorine and petroleum-based products that have been linked to breast cancer."

The pink ribbon-ization of breast cancer is huge business. From cradle to grave, various industries are actually making money off of women who get breast cancer--and the cult of positivity that surrounds breast cancer allows for this kind of neutralizing feel-good, just-wear-a-pink-ribbon-but-don't-ask-how-you-got-cancer kind of mentality.

And I don't mean that we should all be questioning whether we ever put plastic in the microwave or for me to second-guess every time I set foot on a golf course (because golf courses use an exorbitant amount of pesticides to keep their greens so green--something I was aware and conscious of, of course, but didn't think I could ever get cancer from just setting foot on a golf course). I mean we should be questioning the bigger picture--the bigger environmental picture about clean air and water and land. About toxic fumes that industries and corporations put into the air. About what is in the ground water and what big agri-business puts into the food in our supermarkets and how much we can trust the organic label.

Of course we can each take individual responsibility for the choices we make. But we can also and should also ask questions of the major corporations and businesses who profit off of our ignorance. I mean, cancer aside, lets just look at what happened on wall street over the last few years--and that should make us ANGRY. Not tea-party-crazy-racist-angry, but angry in the sense that we should try to take action.

And perhaps it wasn't until the reality of what it would be like for me to be a breast cancer victim (you aren't supposed to use the "V" word but I think it's appropriate here) hit me while on my way to be examined by yet another person at the UNC Lineberger Cancer center that I realized that this was all too personal. And because it is so personal, it became political for me--meaning, I can't just accept the pink ribbon uncritically. Maybe it's because I'm an academic. Maybe it's because as a kid I always wanted to know why. Maybe it's because I'm just someone who doesn't like pink or sappy, sentimental feel-good simplistic band-aids for bigger-than-life realities. And maybe it's just that I'm pretty pissed-off at having cancer and need a scape goat and the pink ribbon culture, in all its corporate sinister connections, is as good a place to vent as any.

If you made it through this far you deserve a ribbon of your own--I'll be heading back to the land of cell phone service this Friday, although I will also be starting the chaos of wedding prep that weekend, so if you do call and I don't call back right away, my apologies--I love the messages and will try to respond when the glorious craziness of wedding prep and out-of-town guests dies down. And Jennifer B. if you're reading, I promise to also post pics here from the wedding in about 2 weeks!

Tuesday, May 11, 2010

The Limits of Theory? My Body.

I woke up this morning 99% sure of what I wanted to do as far as chemo and surgical options, so I wrote to my team of cancer docs and told them. I've decided to opt for the 6 month chemotherapy treatment followed by a bi-lateral (double) mastectomy. I will begin chemo treatment on June 1, 2010 and will end by the first week of December. I will then need to wait 3 weeks before scheduling the bi-lateral mastectomy, and then my recovery period will be 2-4 weeks, depending on how quickly I heal (everyone heals at a different rate apparently--some women bounce back after 2 weeks, others need 6 weeks to feel better). There are more details to share about the surgery, but I think I'll wait until closer to that period to go into details. The important thing to share with all of you now is that I've made a decision that feels right to me, and I've shared that decision with the folks at Lineberger so they will begin scheduling appointments with appropriate departments starting June 1.

As for the genetic testing, apparently two of the robots in the lab malfunctioned which put the test behind schedule. (Who knew there were robots involved! It all feels very Gattaca to me). Hopefully they'll have the results shortly--and they'll let me know as soon as they do. But regardless of what the genetic tests say--and it's sort've a binary thing with the tests--either I test positive for a genetic mutation that may indicate a propensity for me to develop ovarian cancer or that the kind of breast cancer I have is genetically transmitted (which would be important for any children Matthew and I have--need to read further on that front). But since I've already decided that I am going to do the bi-lateral (that's what they call a double mastectomy, so I'm sticking with the medical jargon), then it doesn't really matter what the tests say because if I do test positive, they'd recommend the bi-lateral. Since I've chosen that, then I can go ahead and move forward with a treatment plan. Although I do want to know my genetic test results and certainly hope they are negative because I am not relishing the thought that I may end up with ovarian cancer in the future.

So the above 2 paragraphs ends the medical side of things. But I thought I'd explain the title of my post if anyone is interested.

I'm currently working on a book project on the topic of racial ambiguity. All I've been thinking about for the last few years are various states of ambiguity, especially in terms of issues of identity and subjectivity. And in my own teaching, I celebrate the gray, the indeterminate, the multifaceted and multiple interpretations. But here's the limits of theory: my body. I mean, lets face it, when the first doctor at Wake Radiology told me, after half an hour of palpating (medical speak for touching) my breast and then said that the mass was "indeterminate"--this was NOT what I wanted to hear. I wanted to hear that he knew it was a fibroid adenoma (hence benign tumor).

And when my surgeon told me that I was in a gray area as far as treatment options go, this propelled me into a stage of waffling that I'm not known for. Normally I feel like I collect information and then make a decision pretty quickly and decisively. And if you had asked me, prior to this diagnosis how I felt about my gender or sexual identity, I would have said that I don't really think about it that much. In fact, I'm sure I would have said something to the effect that I am not a feminine person and have a lot of masculine qualities.

But here's the thing--and here's the reason I got really freaked out after my meeting with the oncologist 2 weeks ago and why I was waffling so much about this decision. It was completely overwhelming to hear, in a single day, that I would more likely go into early menopause (75% chance), effectively ending any chance that Matthew and I would have of trying to have a baby biologically (and yes, we were trying--this isn't a secret; we'd been fairly open about this with most everyone--we have also been very open about wanting to adopt and had simply hoped that we would have both options available to us--looks like it's just one now), and early menopause? Lets just say, not what I think I'd have to face at 40 and because of the chemo, the kind of hormone therapy they would give me to ameliorate symptoms wouldn't be available to me (so says my Aunt Joyce). And the chemo treatment they have planned for me is going to be intense/aggressive, so my hair is going to fall out. And I've already talked about how vain I am about my hair. So on top of it all, to think that I'd have to make a decision about my breasts--when all the exterior and interior things that make me a woman will be compromised--it just seemed too overwhelming.

I know this is a rather personal revelation to declare in this blog. I suppose it's in my nature of being overly direct. But I share this to also show that after getting to a low place, after talking to a lot of people, including women who have been through this procedure, I've realized that I'd rather live with the loss of my breasts and the psychological and emotional fallout from that decision rather than the uncertainty of recurrence--of wondering in-between each mammogram appointment whether the cancer has returned, whether it's DCIS or invasive, whether I'd need to have another round of chemo or radiation or more tomoxifen. And that the reason it was so difficult to come to this decision was that while, in theory, I understand gender and sexuality to be but performances (perhaps I'm being overly influenced by Judith Butler here) and while, in theory, I should revel in the ambiguity of being a breastless woman, the reality of what this will mean for me, in practical terms--in terms of my sense of femininity (which I've been forced to recognize I possess--I mean, why else would I be so vain about my hair and buy pretty dresses and care about shoes?) and my sexuality, well, that's not an area of ambiguity I want. And it's one thing to talk about the performance of gender and sexuality and quite another to be confronted with the reality of having all the things that made me feel like a woman be taken away.

However, like many other things that happen in this world, life just doesn't turn out the way you think it will. I know this is going to sound odd, but the only thing that turned out from a very early stage to be the same as what it was in its final incarnation was my dissertation. In fact, I think I am the exception rather than the rule in this respect since what I tell grad students all the time is that they shouldn't belabor their prospectus too much because oftentimes people end up revising the original conception of their diss projects or changing a chapter or two at least, but in my case, I followed it all to the letter. Which is about the only thing in my life in the past decade that ended up the way I planned.

Because lets face it: life is messy. I never planned to live in the U.S. South. I never thought I'd get divorced and then I didn't think I'd get married a second time (a true testament to how much I love Matthew and how lucky I feel that he is part of my life). And, of course, I didn't think that all of this would be happening to me the year I turned 40 (and, my goodness, I had such high hopes for my 40th decade!). I thought that this was going to be MY YEAR--the year I get married, go up for tenure, find a publisher for my book manuscript. And those things will happen (well, at least the first two...the last, we'll have to wait and see whether I really do get that Tiger Woods chapter finished this year), along with things I had not planned for--like the chemo, and the surgery, and everything that both those things entail as well as the uncertainty of living with a cancer diagnosis.

That's OK though. I can roll with the punches. And as I've said time and again, I just don't believe it's my time to go. There are things I want to do, places I want to go, things I want to see, and people I still want to spend lots more time with. So I'm still looking for that alternate metaphor to describe what I'm going through (Shannon's friend Shawnthea came up with some good ones, which I'll share in another post, and I've been thinking a lot about the sea). So for now I'll just use Shannon's own alternate metaphor from the movie Finding Nemo--I'm going to just keep swimming.

Sunday, May 9, 2010

Hug-a-Mother today

As I noted in the previous post, I had been feeling pretty low and blue lately. But it's hard for me to stay too sad for too long. Perhaps it's a natural optimism I have, although I think of myself more a pragmatist than an optimist. And maybe it's the pragmatist in me that is overriding the depression because there are so many examples of women who have survived this disease--who are thriving and cancer free 5, 15, 20 years from their initial diagnosis. I know things will be hard to get to that state, and I suppose what is scary about any cancer diagnosis is the fear of the unknown as well as the stats. I have made my professional career by dealing with "minorities"--and I have spent my entire life feeling like a minority in more ways than one. And I am fine with being a minority; in fact, I celebrate and revel in my minority status.

But now? Now I hope to be part of the majority--part of the 86% of people with Stage 2 breast cancer who will survive at the end of 5 years after proper treatment (in my case, more surgery, a round of chemo, maybe radiation, and definitely tomoxifen). I think the thing that makes me depressed is that 14% -- who is in that 14%? Didn't they also have optimism? Weren't they also pragmatists who looked at the numbers and assumed that they would be part of the majority of Stage 2 breast cancer patients--that they would not be in that minority who did not survive?

Thinking along these lines can drive you a bit batty--which is why being here, near the ocean, has been so wonderful. On Friday, when I was particularly low, I made a lunch and headed for the beach, where I spent a blissful afternoon watching the sandpipers dance with the surf along the shore and I soaked up the sun on my skin (and yes, I wore sunblock, but lets face it--thinking about how I need to wear sun block in order to prevent against skin cancer seems almost a comical point to me right now). I came home, showered, and then headed to my massage appointment, which was SO NECESSARY. I had so much lactic acid built up in my shoulder blades and this massage therapist, Laura (who is wonderful--if anyone is in Ocracoke you should definitely splurge on a massage with this woman--here's her website), just released all my tension and made me feel more relaxed and at peace than I had been in quite some time.

Then on Saturday morning, after an early bedtime, I woke up at 5:30am and decided to take advantage of this opportunity to watch the sunrise. So Bruno and I piled into my car and headed to the beach, where we got to sit between two sand dunes and watch the sun light up the sky:

How can I be sad when I get to be able to wake up and watch the sunrise in such a beautiful place?

Anyway, today is Mother's Day. I will get to see my own mother very shortly, in a few weeks. I won't have the pleasure of hugging her until then, so for any of you who are able to be with your mothers or with someone who has perhaps mothered you at a time when you needed mothering (and we can be mothered by men as much as by women), then go out and hug your mother or a mother today.

Finally, one of the things that has been making me feel better is listening to this song by Corinne Bailey Rae--I've played it over and over again, to the point where I know all the lyrics by heart. It's a song that just makes me feel better--and that seems to speak to me right now. Anyway, thought I'd share it with any of you who might also want a little boost.

Friday, May 7, 2010

Something Else

For those of you tuning in to find out the genetic testing results and hence what surgical and treatment plan I'll be enacting come Tuesday, June 1 (the week following our wedding and celebration of our union), I just got word from the genetics team that test results won't be coming until Monday at the earliest. So please come back sometime Tuesday or Wednesday next week if you'd like to know more. My mother has said that the best mother's day gift I can give her is a negative result--funny how the word "negative" takes on such a hopeful and positive shine when one is dealing with cancer. You want the biopsy to be negative, for example.

I don't want to worry anyone, but I am at a very low point. I figured this would happen to me--I think we'd all worry about me if I didn't hit a very low point. If I didn't feel the weight of the upcoming chemo treatment and the realization of just how hard my life is going to be in the next year. And the uncertainty of what it will mean for me to live with a cancer diagnosis. Because it marks you. As much as I'm giving the bird to the symbol of the pink ribbon--refusing to wear one because I refuse to be openly marked by cancer--the truth is, I AM marked by cancer. I will always be marked by cancer. My life will always be shaped around cancer.

But I don't want to be solely defined by it--I refuse to be defined only as one with cancer. Yes I'm sad. Yes I've been crying. Yes I'm in grief and mourning over the end of so many things--things too deep and intimate to discuss quite yet in the rawness of what I'm feeling. And I am blue. Melancholy. Low level depression. I don't feel like returning email messages. I checked my cell phone voice mail remotely and received many lovely and affectionate and caring messages, and I am grateful for them but I am also relieved that I don't have cell phone access out here because I cannot talk to anyone right now.

And I want to be alone right now. Matthew will be joining me on Sunday--but I need this time to be by myself. To be selfish and to do things just for me--like the much needed massage I'll be getting at 3pm. Of course I've got Bruno to keep me company and to think about. You can't be too self-absorbed when you have a dog to care for who gives you unconditional love.

I've also got books or rather stories. Although I have spent the last few days putting together my tenure file materials

[Aside: That's right ladies and gentlemen--if there is anyone reading this who resides in Greenlaw Hall, then rest assured, my plan is to still file for tenure this August. I just finished writing my teaching and research statements yesterday and will be polishing up the four chapters of my current manuscript this weekend, so that when I finally head back to Carrboro/Chapel Hill I can make the five copies I'll need for my file. The other stuff is already in my office (5 copies of my book and the articles I've published). The uber-organizer in me started planning ahead for this back in the fall and I guess it really pays off now.]

Stories are what I'm living off of right now, as much as the sea air and the food in the fridge (no matter how sad I am, I can always eat and I can still cook).

I just finished reading Minrose Gwin's exceptional novel, The Queen of Palmyra. Minrose is both friend and colleague--in that order--and her book grabs you and pulls you back in time to Mississippi of 1963. I don't want to say much more--you need to read and experience it for yourself--it is a MUST READ and Minrose is an extraordinary writer. There is an interview with Minrose at the end of the book where she is asked about the importance of stories within her own narrative, and this is what she writes:
"We tell ourselves stories that make our lives bearable. These stories shape us and show us how to make sharp turns and put one foot in front of the other--they can trip us up or take us by the hand and lead us home."
I am reminded of how important stories are to me right now, because Minroses's novel allowed me to escape from my present world and to live vicariously through her protagonist, Flo, and especially because there is a quote towards the end of the novel (and don't worry, this won't give anything away) in which Flo muses:
"It was not love that brought me over the dark water. It was something else. Something that didn't give way. Something that held."
In my situation, I think love will be necessary for my support network and my sense of community in order to survive the chemo and the surgery and the cancer. But I also think that there is something else that I have--something else that I hope will sustain and nourish me as I walk forward into a year that I know will be uncertain and full of pain and doubt and fear and frustration.

It's going to be a hard year. I'm not looking forward to it. But I will live through it. A little balder. A little thinner. But still alive. And really, at the end of the day, that's the goal.

Wednesday, May 5, 2010

Wanted: new metaphors and analogies to describe what I'm going through

I'm back on Ocracoke (and hence without cell phone service--so if you want to contact me, please send me an email) at the Jettshouse (click here for the link--it's really lovely and one of the reasons I picked this place is that the owners have restrained themselves in the decorating department, meaning things have a nautical/beach theme, but in a tasteful way -- no chintz or tacky stuff). Anyway, I don't have any new information to share on the medical front. I had my MUGA test on Monday--it was an hour and a half, most of which was spent waiting in-between things--for them to insert an i.v. line, flush it with saline, draw blood, put radioactive stuff in my blood, and then reinject me with my radioactive blood and then a series of films on either side of my chest. None of it was painful, except for when the nurse put in my i.v. line--she's either new or isn't good at sticking people because I've NEVER had a painful i.v. line put it (I have nice big veins to choose from) and I give blood and plasma/platelets on a regular basis, so I get stuck a lot (I suppose I should put all that in the past tense since I'm not sure I'm eligible to be a donor since I have cancer--I mean, definitely not while I'm in treatment, but does anyone know the answer to this question--if you have been diagnosed with cancer, are you forever banned from giving blood?).

Anyway, the films from the MUGA will probably be processed today (or maybe yesterday) and they're having the cancer conference this morning, so if they are discussing me again, I'll know more this afternoon/evening. I sent a long message to my surgeon and oncologist to figure out which treatment plan is the best for me (actually, it's really the surgical part I'm grappling with--more in a future post when I've made the decision--I don't want to torture you or myself with the back and forth I've been struggling with). And of course the genetic test results come back this week, so really no firm decision can be made until we know more later in the week.

So if you read this only for the medical info, you can stop now because I guarantee what will follow is a lengthy and perhaps pedantic/academic/philosophic rumination on the nature of cancer discourse, specifically breast cancer discourse. I have to say, it helps me to get this all out. I have been told I should keep a journal--and I have been writing more private thoughts for my eyes only, but maybe because I blog already, there is something appealing about putting this out there and seeing if this resonates with anyone--a therapeutic way of me processing everything. I should also say that if I mention you in this space and you prefer that I don't, let me know and I will just refer to you by your first initial, like "J."

Rebecka, my wise and trusted friend/colleague said to me that I don't have a discursive community--I have rejected the pink ribbon motif and "think pink" attitude that prevails around breast cancer. So where does that leave me in terms of having a community of likeminded women (and it is predominantly women who get breast cancer, although not always--men can get this and have gotten it, but it is rarer for men). Is there a support group in the Triangle or on-line of women, like me, who don't want to wear pink and buy KFC buckets of chicken?

[Aside: You know, KFC missed a great opportunity to create a slogan reinforcing the product with the disease they were helping, something like: "Eat a breast to save a breast!" But perhaps the unsavoriness (in so many ways) of that slogan prevented them from putting that on all their pink buckets. Oh well, maybe next time.]

Elissa sent me a link to the first chapter of Barbara Ehreneich's book Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America. The chapter, "Smile or Die: The Bright Side of Cancer" rings so true for me. It details Ehrenreich's own breast cancer and her allergic reaction to the pink ribbon-ization of the disease, one she links to sexism and an infantilization of women, since she astutely notes on page 24 that while women with breast cancer are given little pink teddy bears with a pink ribbon stitched in the place over their heart, no one would ever think to hand a man a set of toy matchbox cars as compensation for their diseased testicles.

[Aside: I'm adding the diseased testicle part--Ehrenreich doesn't push her analysis that far, but I think that it's worth pushing and thinking about how women are expected to compensate for their breasts with this disease since there is an obsession with the breast, not just in terms of breast cancer but culturally I feel like we are consumed by images of women's breasts--they drive how we think of women in terms of their sexuality, their femininity, their sense of self.]

And besides Ehrenreich, there are other women who have rejected the whole journey metaphor. I just ordered this book from Amazon, Five Lessons I Didn't Learn From Breast Cancer (And One Big One I Did), by Shelley Lewis. The Amazon blurb from Booklist reads:
"This cancer survivor’s book does not promote cancer as a spiritual gift. This is not a book filled with ‘Look on the bright side’ advice, Lewis says. This is . . . for women who don’t have and don’t want a spiritual makeover after breast cancer . . . and don’t expect breast cancer to fix what’s wrong with them. Furthermore, My only growth was the one removed by my surgeon. Her message throughout is that breast cancer can’t change who you are, it confirms who you are."

Lewis and Ehrenreich's sentiments really resonate with me, as does Judy Segal, a professor of English (specifically rhetoric) at the University of British Columbia who has a great article on rejecting the typical narrative associated with cancer and breast cancer (thanks for the link Jordynn!). One of the things that infuriated me when I got my "cancer packet" was this stupid bookmark (here's the post that shows the bookmark--scroll to the end with the photos). The back of the bookmark has a poem called "Walking with Cancer." Now, this is just a BAD poem. I mean, I do teach literature for a living, and while I'm neither a poet nor someone who specializes in poetry, I can still tell a bad from a good poem, and this one sucks. The fact that it is bad cancer poetry makes it suck harder. And the fact that it is specifically about breast cancer makes me want to vomit all over this stupid poem. My favorite line (didn't bring the bookmark with me so I have to paraphrase) is that on your "journey" with cancer "there will be many rest stops along the way." Really? Is that because I'll have to pee a lot? WTF???!!!

I know folks are well intentioned, but I really hate the whole "journey" metaphor. Sorry to sound like I'm stuck on repeat, because I know I've written that before and complained about that before.

[Aside: By the way, I know how self-absorbed I'm being. I mean, I don't think I am a certified narcissist, even though I do have some narcissistic tendencies, but right now I FEEL like a narcissist--like everything is me, me, me and my cancer, my cancer, my cancer. I'm beginning to bore myself with all of this so PLEASE feel free to change the conversation on me if I'm being boring. I HATE being boring and I think I'm being boring. I would say I'm being a drama queen, except that I don't think that this is needless drama; rather, it is the kind of drama that accompanies cancer. But still, that's no reason for me to go on and on. Although, this is my blog dedicated to explaining what I'm going through, and blogs are by nature self-absorbed forms of information dissemination, so I should stop over-analyzing.]

A well intentioned UNC staffer (not in Greenlaw--the Greenlaw folks have been fantastic, one and all--I *heart* everyone in Greenlaw), replied to me when I mentioned that I wouldn't be able to do "x" next semester because of my diagnosis that s/he hoped that I "have a great experience through this time period." All I could think was that this person has no clue about cancer and chemo. There will be nothing "great" (as in wonderful) about what I'm going through. It is "great" (as in a big deal) -- what I'm grappling with. But I mean, do people really think I'll enjoy myself or learn these amazing life lessons that will have me wise and sagelike when it is all over? Will I really have these amazing epiphanies throughout chemo, ones that will leave me grateful for having the disease? Fuck that! I'd much rather NOT be wise and much rather NOT have cancer than to have lovely stories to share of my deep insights into myself and this disease.

So where does this leave me? I actually went into the Cancer resource center at the Lineberger and freaked out this woman, Beth, who was staffing the center. I told her that I had recently been diagnosed with breast cancer and was thinking about going to a support group meeting but that I was looking for a meeting where I'd be comfortable because (and here's where I tried to be as diplomatic as possible) I really didn't buy into the whole pink ribbon way of dealing with the cancer and I'm an edgy and angry person who wants to be with other edgy and angry women who have this disease. Of course Beth (who turns out to have been a former breast cancer nurse navigator) was wearing a pink shirt with a pink ribbon pinned on. I knew I was potentially offending her or hurting her feelings, but I thought maybe I could explain myself without causing offense. She told me I should try calling Cornucopia House and that maybe they could find someone for me to talk to 1:1. I think that was her diplomatic way of getting rid of me and/or telling me that I'd have a hard time, esp. in the South, with finding a likeminded community.

Because the other difficulty, for me as a lapsed Catholic, current agnostic, and sporadic practioner of Buddhist meditation, is that I am not a church going Christian. Which also means that I reject the whole "believe in God and you will be healed" narrative. Let me just say that I really LOVE anyone who offers to pray for me. I love the prayers. And I respect everyone's various religious beliefs. I've really struggled with figuring out my own faith issues and religious beliefs. And for now this is where I'm at--a skeptic who can't rule out the presence of god (or gods) but who isn't comfortable planting my flag in a particular faith. So when people, like the very nice woman at Carolina Fitness, tells me that my faith will grow stronger as I go through chemo (I needed to freeze my account there and had to explain why I wouldn't be in the gym for the next 6-9 months), I nod my head in agreement, except that I think her idea of faith and mine are running along different lines.

[Aside: This woman was super-nice; her mother and sister had had breast cancer and lost their hair with chemo and when I stood up to leave she gave me a big hug--smooshing my poor breasts (which are still tender from the surgery) into her and telling me that she's going to pray for me--which was nice, the hug and the prayers, even though my breasts were sore for a bit afterwards.]

So I'm looking for another metaphor. A new discursive strategy and community. Another way of talking about what I'm going through that doesn't rely on the tropes of "a journey" or "spiritual growth" or even embattlement--a commenter on my other blog, Mixed Race America, advised me to:
"Ignore all the "cancer is a battle" rhetoric that tacitly implies that if you don't "fight" hard enough, you'll lose the "battle."

Where does this leave me then? There have GOT to be other women who also want a different way of thinking and talking about cancer. Or maybe I should try to start a new movement--an NFPR mentality in which it's OK to swear, you can be positive or negative, however your mood strikes you, and where there isn't a shred of pink in sight...

P.S. This just in from Matthew Taylor (friend and colleague and I included the last name to distinguish him from Matthew G-R-A-D-Y), I am apparently not alone in loathing the pink ribbon--there's this interesting blog post that gets at the corporatization of the pink ribbon campaign. I guess a movement's already afoot--wonder how I can join on their bandwagon...

Monday, May 3, 2010

Cancer observations

So I've got a 10am appointment for my MUGA today (see this post if you want to know what a MUGA is and why I have to get one done) and then tomorrow a.m. I'm headed back to Ocracoke (where I won't have cell phone coverage, so email will be the only way to reach me or we can skype/gmail chat)--and I won't be back home until late May, the week before the wedding. No firm decision can be made about surgery and treatment until after I get the genetic testing results, which probably won't happen until May 7, so if you want an update on the treatment and surgery plan, you should check back on Monday, May 10, because hopefully I'll have talked with my team of cancer docs and we will have come up with a firm resolution. Of course it might not be until after Wednesday, May 12, since the cancer conference meets every Wed. morning to discuss various cases and they may want to discuss my case then before we firm up any dates for surgery and chemo.

Anyway, this post is not about the nuts and bolts stuff. Like the one I wrote previously, this one is more about how I'm feeling and coping with all of this information. And I'm really and truly overwhelmed. I need to make a surgical decision in the next week that will impact the treatment and rehabilitation options I will be facing in the next year. It's heavy stuff. I've had two minor break downs so far and am hoping, once decisions are made, to be at the beach and do some real soul searching and healing and coming to grips with all of this as best I can.

But even amidst all of the confusing and anxiety producing and hard news of my initial diagnosis and subsequent round of meetings with the team of cancer docs at the Lineberger Center, I've been overwhelmed in a completely different way by the amount of love, support, well wishes, expressions of kindness and sincere sympathy and empathy that have made me feel like I'm not alone in all of this--that I can get through this in one piece.

And there have been many observations I've made about when you get a breast cancer diagnosis. For example, when you get diagnosed with breast cancer:

*People from near and far email you immediately with messages of support and expressions of shock and offers of help--and in the initial days of my diagnosis this was critical for me to feel like I could get through all of the difficult days I knew would follow.

*Matthew (my partner in all senses of the word) shares in my pain but more importantly he listens to me and holds me when I cry and laughs at my macabre jokes, even though they make him uncomfortable. He also lets me pick out the Ben and Jerry ice cream flavors (I *heart* Pistachio, Pistachio) and lets me pick out the movie rental (500 Days of Summer) even though he's not really a romantic comedy guy and we usually allow veto power. But veto power is suspended for now.

*People send flowers and bring flowers and I love flowers! The Department of English and Comparative Literature (spurred I'm sure by Beverly) sent a lovely bouquet the day after I was diagnosed. And friends and family near and far have sent flowers or dropped off flowers. And every time I see a bouquet I smile and just feel happy!

*People bring other gifts and send cards. A former student dropped off a helium balloon and a tomato plant. Another friend dropped of chocolate. And cards have been arriving by post and dropped to my department mailbox, by people I know intimately and people I know as colleagues or even just acquaintances. And every time I get a gift or card I just get a huge warm fuzzy.

*People drop off food. Complete meals in many cases. Ashley left a 3 course meal the day I came home from the first marathon cancer meeting. My Aunt Joyce mailed 7 packages of frozen Jamaican beef patties on dry ice; my friend and ex-college roommate Sheri sent half a dozen frozen gourmet meals, and Robin Smith (a grad student who shares my office) dropped off homemade chili and cornbread. I love to eat and when people cook for me or leave food gifts it makes me feel cared for in one of the deepest ways possible.

*People offer help. Specifically after my last post, I received numerous email and phone messages offering to walk Bruno, be my chemo chauffer, drop off food, take Matthew out for a beer, and generally serve as a sounding post for either of us whenever we need it. Jordynn Jack will be organizing a google doc spreadsheeet for both dog walkers and Chemo drivers, and Laura Halperin will organize a google doc (with Jordynn's help) for food drop-off when we know the treatment schedule. So be on the lookout for a future post and/or you can follow-up with Jordynn or Laura and sign yourself up for a slot (which is the beauty of google docs--you can do it yourself).

*Family and friends from far away have called or sent email messages or in the case of my best friend Beth, flown in from CA for my surgery. And more will be coming to our wedding, to celebrate with us--which means the world to us because there is SO MUCH going on in the month of May--decisions regarding cancer but also fun things like picking out cake flavors (we've decided to go the untraditional route, which I'm sure won't surprise anyone--so we're doing 3 half sheets of chocolate cake with chocolate ganache, yellow cake with ganache filling and almond-mocha icing, and lemon cake with lemon curd filling and lemon buttercream icing from Weaver Street market). Every voice mail messages or email check-in, long or short, has helped to sustain my energy and focus and let me see that I've got this amazing community of support near and far. And that is what is going to keep me alive at the end of the day. I can't imagine how anyone could do this alone.

So thank you for reading this blog. I know that there are people reading this who don't even know me--who have never even met me--and knowing you are interested is just humbling.

One nice story: I went with Matthew to finally order the pair of eyeglasses I had been wanting for a long time. I figure, why wait! So we went to Carrboro Family Vision (click here for their site) to go try on glasses and order the lenses (it's the Silhouette glasses I've been eyeballing, so to speak--the rimless ones that have interchangeable parts (here's the pair I'm getting). Anyway, our friend and kick-ass optometrist, Jason Chow, is one of the eye docs there. He had also, unbeknownst to us, circulated our blog link to the staff. So when we were there a while, I asked the receptionist to leave him a message that we were there picking out glasses and if he had a moment to say "hi" between appointments, that'd be great. Well, what followed once I mentioned my name was that every single staff person we spoke to told us that they had been reading this blog and really wanted me to know that they were thinking of me and what I was going through with the cancer. And that was really humbling and so nice! I mean, the fact that these people who don't know me but who read the blog because Jason gave them the link wanted to reach out to me and let me know they were thinking of me.

Truly--all the love and support--it's what I'm going to need to make it through what I can only imagine will be a hellish 9 months of treatment and surgery and rehabilitation. So thank you now and in advance. I only hope one day I can repay everyone for their generosity and kindness.

[This is a photo taken of me and Matthew at a wedding shower that was the same night as the surgery--I know you can't see how dilated my pupils were, but I was pain-free and flying high as a kite!]

P.S. A few people have written to say that they have wanted to comment but weren't able to because you have to have a registered account. I just re-did the settings to allow anyone to comment, including anonymous commenters. I'm generally wary of doing this since in my other blog, when you allow anonymous comments to come in, unfilitered and unmoderated, lots of crazy stuff can happen. But I'm going to assume that this won't happen here (or hope it won't at any rate), so please do leave a comment if you'd like to!