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...