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Saturday, July 17, 2010

Why I want to turn in my membership card to the Cancer Club

So I know I've written about having "good" weeks and "bad" weeks, but unfortunately I think that the cumulative effects of the chemotherapy may tear down that breakdown--it's more like, right now, from days #1-9 I'm feeling fairly crappy and then now, on day #10, I'm beginning to feel somewhat "normal" again--which means my taste buds are coming back (vegetables no longer taste like dirt and Matthew's Dad brought over a bunch of fresh tree-ripened peaches that taste MARVELOUS to me, which is a huge relief), my energy level isn't totally zapped (although it is lower than what it has been on other day #10s), and my stomach, while still not 100%, is able to tolerate reasonable amounts of food.

All of which is to say, days #1-9 during this third round of chemo have been hard--and my nurse, Delma, confirmed that the last round of my AC chemotherapy (which happens this upcoming Thursday, July 22) will probably be even worse, in terms of my nausea, my fatigue, and my general overall well being (because a newish symptom I've been having are serious muscle and joint aches). I'll start Taxol in August, which apparently is not as hard on the system in terms of nausea--and when I expressed some concern about the muscle/joint pain/neuropathy that is supposed to be REALLY BAD with Taxol, my chemo nurses (and Delma) all said that given my relative fitness and the fact that I've been walking 1-2 miles every morning should mean I won't have much bad side effects in this regard.

So that ends the medical/health update portion of the post. What I really wanted to write about is how much I'm resisting the label of cancer patient and the standard narratives about cancer.

This, of course, is not much of a surprise since, after all, I named this blog "No Fucking Pink Ribbons" -- which essentially is me giving the middle finger to not just cancer but the particular culture of breast cancer that the pink ribbon emblemizes. But I mention this because it's almost as if I am in a form of denial. And what I mean by that, is despite what I KNOW to be true about my therapy--that I have poison coursing through my body that is *hopefully* killing off any microscopic cancer cells leftover from the lumpectomies in both breasts, that I am also looking for other reasons for why I'm feeling so poorly.

For instance, since the 3rd round has been harder on me, I've been more tired (exhausted really) and I've also been sore--my joints and muscles ache, like I've slept on a bad mattress or have worked out REALLY hard the day before and am achy all over. And lets face it, I'm sure it's the chemo that is making me both tired and achy. But what I thought, initially, was that this was a sign of me aging--that at 40, my bones just hurt. When I mentioned this to my friend Shannon (who was visiting from New Haven and who took good care of me while she was here), she laughed and said, "You feel sore because you have poison in your body that is making you feel sore!"

Obvious, I know. And yet, there is a part of me that doesn't want it to be chemo--that it would almost make me feel more "normal" if my ailments were a sign of something more normative--like aging. Never thought I'd be looking to feel more "normative"--since normativity is something I'm continually questioning in my teaching and research. But, again, there goes the limits of theory. Because when it comes to your health and your body, we all want to be normal--none of us want to be outliers (unless we're talking about stage IV cancer, and then OF COURSE you want to be in the minority of survivors--but I really *hope* I don't have to go there).

I also don't want to be part of any therapy groups or talk to any survivors--anyone who has been through this. Which is weird, I think. I mean, the researcher in me would think that talking to people and hearing about their experiences and learning from their experiences would be helpful to me. But, instead, I've balked. Actively balked. Many of you have offered for me to talk to various friends or family members who have had breast cancer. Very generous. But I really haven't wanted to know about other people's experiences of breast cancer. In fact, it has been easier for me to talk to other folks about cancer when it's NOT breast cancer (ovarian, colon, stomach, etc...). There is just something about the breast cancer club that I've had an allergic to.

Case in point: I've been going to yoga that is specifically for people who have had a cancer diagnosis--there are 2 places that offer cancer for yoga patients/survivors: UNC Lineberger Cancer Center (at their off-hospital site location at Carolina Pointe near the intersection of I40/Hwy 54) and Cornucopia House, this wonderful resource for not only patients and survivors but caregivers as well. I really like the yoga at Carolina Pointe, but at the Cornucopia House, well, that's a different story.

And it's not the yoga instructor--Doreen does yoga at both places. It's the vibe at Cornucopia House--it's this group of women, half of whom are survivors of either ovarian or breast cancer, many of them have been going to yoga for 2-3 years (and know one another pretty well) and they are a jokey, fun crowd who have a wealth of knowledge among them--of treatment issues and side effects and what life is like with tomoxifen. And I mean, they are wonderful women, and I can see the therapeutic value of not just the yoga but having this group of people to support you and that you can lean on and who will ask you about where you are in your treatment and can encourage you as you go through things, as you make it on the other side.

Yet the whole time I was there, I just felt freaked out. Unlike the Carolina Pointe class, this one begins with us introducing ourselves (I was the last one to speak). All the women began with their names, their type of cancer, and where they were in treatment and/or how long they had been "N.E.D." (no evidence of disease) -- and they ALL made jokes about NED--about whether they were dating NED, about the fact that NED gets around with the ladies, about how they all want to be with NED. I'm sure for many of these women, this time in yoga is something they really look forward to, for the exercise but mostly for the camaraderie (several of them before and after class were chatting and gabbing and catching up with one another).

But I didn't want anything to do with these women. When it was finally my turn, all I said was my name and that I had been diagnosed with breast cancer this past April. They were all nice and friendly and turned sympathetic eyes to me (I was the most recently diagnosed person in the room), but all I could think was that as soon as the class was over, I wanted to leave without talking to anyone--and I did manage to leave without talking to anyone, largely because I think I gave off this very intense "leave me alone" vibe.

When I mentioned my reaction to Beth, she said that it made sense--because I am rejecting anything that's "normative" with respect to breast cancer--because I don't want to be affiliated with breast cancer beyond what I'm already going through with the chemotherapy--because this is my way of taking control of the uncontrollable--because this is the way for me to get through so much that feels overwhelming--because I don't want a community of breast cancer patients or survivors, I just want the community of friends that I have already. And maybe I just don't want to be part of this new club that I find myself in.

Anyway, that's all for now. Hope everyone in the Triangle is staying dry -- thunderstorms projected not just through the weekend but through the week!

1 comment:

  1. Jennifer, I completely understand your response, and I think I would feel the same. There is something oddly coercive about being thrown into some so-called club without your consent. I had a similar reaction when I used to meet fellow members of the military (or worse, people who knew "another military guy" and would introduce us)... the supposition was that because of that shared category, we had anything in common, or that I would prefer to hang out with "other military guys" rather than anyone else. I agree with your statement (or was it Beth's?) that this sort of involuntary characterization or categorization is part of the chaos of the experience. You don't want to be Breast Cancer Jennifer, you just want to be Jennifer. Kudos for resisting the pre-fabricated (and pathological) identity.