Search This Blog

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.


  1. So glad to be able to check in here and HEAR your voice and your words. Miss you, Jen. Thinking of you.

  2. Thinking of you, Jen. And it's not like having a whole edgy/angry support group, which would be awesome, but if you'd like to read more on breast cancer by my edgy, angry, brilliant friend Laura Zigman, you can check out the series she wrote for HuffPo a couple of years ago at