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Monday, April 15, 2013

My friend Tina

Three years ago today I was diagnosed with breast cancer.  I remember being slightly nervous/anxious all morning and the early afternoon.  And I remember chiding myself for feeling so anxious--that the results would be negative and I'd feel silly, later, for spending so much time fretting about nothing.

Except that I was wrong.  It wasn't nothing--it was stage 2 breast cancer in my left breast and DCIS in my right.

April 15 is tax day, but it's always going to be "the day I found out I had cancer."  How could it not?

But this morning I also learned that a childhood friend, Tina, passed away yesterday.  She had also had breast cancer--diagnosed much earlier than mine.  I can't recall the specifics of her own diagnosis--we were friends from music camp when we were teenagers, had drifted apart, but had briefly come together from time to time when our paths crossed--when I came back to California while living in Boston (where Tina was doing a PhD in French literature at UC Berkeley and I was doing my own PhD at Boston University) and then when I was visiting Paris, where she had relocated with her husband.  When she found out about my diagnosis through a mutual friend, she sent me a really lovely message--supportive and generous and funny, which sums up many of the wonderful qualities of Tina.  She was also driven, smart, and beautiful.

The most lasting memory I'll have of Tina is sipping a kir royale in the Latin Quarter of Paris while listening to a jazz quartet.  It sounds like a cliche--one of those Parisian moments that happens in movies.  And walking, afterwards, along the Seine with Tina and her husband Renaud, I felt like I was in a movie--that it was a perfect night because of where I was and who I was with.  The last time I saw Tina was when she hugged me good-bye at the entrance to the metro by Notre Dame--I have a picture of the two of us, at night, with Notre Dame lit up in the background.

I feel sad.  And, I suppose there's also the odd coincidence of learning about her death today.  When I found out, last week, that she had come back to SF to seek treatment and that she was, essentially, dying, I felt freaked out--and knew it was a matter of days.  But it doesn't really make a difference knowing that someone is going to be passing soon.  I suppose it might take some of the blunt shock away, and maybe it helps people prepare themselves.  But it still feels shocking.  Even knowing that it is going to happen--that it's inevitable--it still surprised me.

There's a built in mechanism that many of us have--a denial mechanism that says we're going to live forever.  Sure we'll get older and maybe we'll have injuries or illnesses, but modern medicine is a wonderful thing and you hear stories all the time about the 90 year old who ran a marathon, the 80 year old who climbed Everest, the 94 year old who went back to college and finally got that degree.  And you think you'll just keep living your life until...

My cancer diagnosis was like having that mechanism disabled.  It was a reminder that people do die.  I will die.  You will die.  The people we love will die.  It's a mortality wake up call.

And in the three years since that diagnosis, I've been able to get that mechanism to work again--I've been able, from time to time, to think that maybe I really will live forever--maybe I'll finally decide to go sky diving when I'm in my 70s.  Maybe I'll have a second career as a French chef when I'm in my 80s.  I've been able to think that maybe my cancer really is gone--that as the clock ticks up to my 5 year mark, maybe I'll really be able to say I'm cured.

But maybe not.  Maybe the mechanism, that denial mechanism, is actually permanently broken in me, like a non-digital clock that tells time correctly only twice a day--maybe that's what it's like for me and the rest of the time I know.  I know I'm going to die.  I just don't know when or how.  That's probably one of the scars I have that won't go away.  Because I wonder.  When I have a weird pain in my abdomen, I wonder if a tumor is growing in my uterus or ovaries.  Because when I find myself more tired than usual, I wonder if it's just being middle-aged or if it's a sign that the cancer has come back.  Because when I learn that another person has died of breast cancer like my friend Tina, it's a reminder that people still die from this disease.

RIP Tina.  I'm glad you aren't in pain anymore.  I'm sorry for everyone you left behind who will have a Tina sized hole in their hearts.  I'm grateful to have known you and to have my last memory of you be a picture perfect Parisian memory that is happy.  Thank you.

Thursday, March 14, 2013

An Update on Herstories: Breast Cancer Narratives and CounterNarratives

So I meant to write about attending the Herstories: Breast Cancer Narratives and CounterNarratives symposium right after I got back on March 2 because it was such a wonderful event and it was eye opening for me in many ways.

The first thing I have to say is that I didn't realize how much I wanted to be with other women who had experienced breast cancer.  When I was first diagnosed and then going through chemotherapy, many people offered to put me in touch with women who had had breast cancer and friends and relatives (especially those who had gone through their own bouts of cancer) had talked about how important community is and the friends you develop in the chemo chair.

But I didn't want that.  Not then.

When I was in the thick of things, when I was going through chemo and then preparing for surgery and then recovering from surgery, I didn't want to know other women who had gone through breast cancer or who were going through similar things.  I know that might sound perverse--it felt perverse at the time.  I tried going to yoga at Cornucopia Place and got totally freaked out the one time I went because it was filled with these women who had gone through cancer (mostly breast cancer) and they were laughing and joking and talking about their experiences (and most were post-chemo/surgery -- I think one woman was re-starting chemo but we seemed to be the only 2 women in active treatment) and it really freaked me out.  I'm not exactly sure why--maybe because I didn't identify as someone who was NED (no evidence of disease) as many of these women did.  Maybe because I was in the thick of things.  Maybe because I was angry.

So fast forward to March 1 & 2.  I'm at Wake Forest University listening to some pretty incredible people talk about their experiences with breast cancer--either from the perspective of being doctors/caregivers or family members of someone with breast cancer or with being women who had the disease.  And it was over lunch as I was sitting at a table with two women, both academics, both survivors, that I realized how glad I was to be sitting with them and talking with them about our shared experiences.  We exchanged stories about the weird and stupid and odd things that got said to us when we were diagnosed with breast cancer (one woman shared that a friend told her that she didn't seem like the kind of person who got breast cancer, to which she said, "What's the profile of a breast cancer patient?"--we both totally cracked up at her story--and maybe it's not THAT funny, but at the time it seemed hysterically funny.

And it reminded me about the easy camaraderie of the women in the yoga group.  I asked one of my tablemates about whether she ever stopped thinking about recurrence now that she was at the 5 year mark (she just had her 5 year check up last month) and she said that it does lessen--that especially that 5 year mark seems significant in terms of turning a mental corner.  It was comforting talking with her and with my other tablemate who had finished treatment and was embarking on breast reconstruction.  Our experiences were different yet similar--and perhaps one similarity was the desire that all 3 of us had to try to narrate our stories--to try to talk about and write about what we had gone through.

That was a large point, perhaps the main point, about this conference--trying to listen to the stories of women going through a breast cancer diagnosis.  Trying to hear what women with cancer have to say about the disease and their treatment and their relationships with family and friends, but also to hear about the ways that the disease isn't the only thing that is defining them.  People talked about the importance of humor.  About empowering women in their decisions and in telling their stories.  People talked about resisting the corporatization of breast cancer in its pink ribbon incarnation.  People reminded health care professionals (oncologists, surgeons, nurses, radiologists) about the importance of listening, really listening, to what women have to say.  And one woman gave this amazing 20 minute power point presentation about the history of breast cancer from the time of the ancients to our present day culture.

I am not doing justice to how much I learned and took away from this experience.  I not only got to listen and learn, I got to meet and have 1:1 conversations with these panelists (because it was a fairly small conference, about 50-80 on average attended each session).  You can click here to see the full conference schedule and I'd definitely recommend trying to google folks whose talks seem interesting.  Just to highlight a few, Amy Boesky (Boston College) has a memoir about her family and being positive for the BRCA mutation (she was also recently on NPR where she outed herself as one of the writers of the Sweet Valley High series!).  I met Ana Iltis who is editing a journal, Narrative Inquiry in Bioethics, that strives to tell the stories of people who are typically not enfranchised to have their voices heard, and she told this remarkable (and anger producing) story about her husband's aunt who was not treated with respect by the medical establishment.  I talked with Kathryn Montgomery, a leading researcher in the field of medical humanities, who shared stories about her daughter's breast cancer (and its recurrence), and I was inspired by Hephzibah Roskelly, a fellow English professor down the road at UNC Greensboro who has talked theorized about her experiences with breast cancer in a way that is so smart and accessible and powerful.

All of which left me, at the end of this 2 day event, feeling like I might be ready to try to construct my own narrative about breast cancer.

Thursday, February 28, 2013

HerStories: Breast Cancer Narratives & CounterNarratives

I should really have posted this a week ago -- I sometimes forget that I have this blog (awful, I know) and then I remember and I think about all the things I want to be writing in this space, could be writing in this space and SHOULD be writing in this space.

Like this upcoming symposium at Wake Forest University in Winston-Salem, NC.  Because this is such short notice, only folks who live in the greater NC area will probably be able to come (unless, of course, you were aware of this symposium much earlier).  I'll be giving a full report because I'm going both Friday & Saturday.  But for any of you who do live driving distance to Winston-Salem, please consider checking out at least Saturday's offerings--you can find the program of events on the Wake Forest Humanities Institute Page (click here).

The conference is free and is devoted to examining breast cancer narratives and counter narratives--like critiquing pink ribbon culture.  So OF COURSE I had to go--I mean, look at the keynote speaker and what she's going to talk about:

KEYNOTE ADDRESS: “The Self-Telling Body—Who Tells Whom in Breast Cancer Narratives?”
Rita CharonProfessor of Clinical Medicine and Executive Director of the Program in Narrative MedicineColumbia University
[That's for Friday night at 6pm]

And then, of course, there's this description for the last panel on Saturday:

2:30 p.m. – 4:00 p.m.
This panel will offer literary, philosophical, and cultural approaches to analyzing breast cancer narratives in the twenty-first century. Topics will include the expansion of visual representations, links between genetic narratives and feminist theories of the body, concepts of the posthuman, analysis of pink ribbon culture, and pragmatist and bioethical inquiry into the lived experience of this disease.

But whether you're able to come at the last minute or not, I promise to write up my experiences of attending when I'm back on Sunday.

Tuesday, January 1, 2013

Happy New Year -- Looking ahead, looking back

So this seems about par for the course--a new blog post every 3-4 months.  Of course I had often thought about writing and posting in this space.  I'm never sure if there's anyone still reading this blog, but I thought that it's still useful to have it up for the older posts, the ones that are happening in "real time" in terms of my initial breast cancer diagnosis, treatment decisions, chemo, surgery, and recovery.  If you want to read any of those posts, you can look on the right and see the key blog posts I've highlighted that gives you a sense of my story so far.

But this is a new year.  Specifically, it's the first day of 2013.  The doomsday folks who misread the Mayan calendar were wrong--life didn't end on 12/12/12.  We also managed to avoid going over a fiscal cliff (well, perhaps--the House still has to approve the deal).  We are all still alive.

Although I suppose this is a point where I could wax on in philosophical fashion about how much longer I or anyone else has on this planet.  For better or worse, what my cancer diagnosis and everything that followed from it has meant is that I'm more aware of my mortality--more aware that I am alive, for now, but whether it will be the recurrence of my cancer, a new cancer (tamoxifen makes me at risk for uterine cancer, and the chemo made me at risk for ovarian cancer) or just the vagaries of life (random acts of violence, accidents, illnesses--wow, this is turning into a rather somber new year's blog post).

Yet that's not what I want to write about, not today.

What I want to write about, the "looking back" part, is a post I've said I was going to write for over two years:

What it's like not to have breasts.

[Aside: for anyone new to this blog, I had bi-lateral (double) mastectomy surgery in mid-October, 2010 without reconstructive surgery.  For more on my reasons not to do reconstruction, click here for this older blog post]

I must say that the answer I would have given you in January 2011 would be different than January 2012 and now, January 2013.

In the weeks and months after my bi-lateral mastectomy surgery, I was very low.  Perhaps not a full throttled depression, but there were so many things to juggle, mentally and emotionally, related to my breast cancer and related to my life in general.  The first time I took a shower after I was out of the hospital, I just sobbed.  I cried every time I took a shower and had to change and saw the bandages, the drains, the empty space where my breasts had been.  And the first time that Matthew and I had sex, I sobbed, and he just held me and told me it was going to be OK.

That's been the hardest part.  Perhaps that's an overly intimate thing to share, but it's true--it's what I had suspected all along when I was trying to decide whether to do the mastectomy surgery or just the lumpectomy with follow-up radiation.  I knew that losing my breasts meant losing sexual pleasure.  And while I could have had replacement breasts that would "look" like my old breasts (or newer, better breasts), the sexual stimulation and pleasure would be gone (you can't have nipple stimulation with a fake nipple and silicon breasts).

And there's the clothing issue.  I gave away several dresses and blouses that really didn't fit anymore--that didn't look good without my breasts--or because I was too self conscious with the low cleavage showing my scar tissue.  So shopping has been a new challenge.  Never a fan of the cowl neck line previously, I now have 3 different cowl neck sweaters/dresses because for some reason this look works for breastless women.

It's been over 2 years since my surgery.  The scars have healed (although I still don't have much sensation in my chest area or underneath my arms--apparently when they remove your lymph nodes and your breasts and cut through these nerves, they can take a long time to wake up, if they ever do--my surgeon says not to worry about it, so I don't).  And I've healed.  I don't walk around thinking about myself as someone with breast cancer.  Then again, I never forget it.  Like with any non-visible but potent identity, it's something I'm always aware of but don't think about all the time.

So the word I would use, now, to talk about not having breasts?


This is my new normal.  And not having breasts feels normal to me.

I can name a few milestones.  The first time I changed in a woman's locker room at a spa.  I was extraordinarily self conscious--this was pretty early on, February 2011.  I wanted to treat myself to a few spa treatments because my skin was wrecked after chemo (chapped, dry, dehydrated) and because I wanted to treat myself after going through that whole experience.  I was the only person in the locker room, but I worried that there might be other women who would come in and see me...and then what?  I don't know whether I was afraid that they'd be embarrassed or I'd be embarrassed or both.  And what would we be embarrassed about?  My deformity (because that's what it felt like then).  My visible mark of having breast cancer?  I changed quickly and was grateful that no one came in.  I considered this a minor triumph that I didn't use the privacy booth but was able to just change in public, even if I felt anxious about it.

The next milestone also came at a spa, this time in San Francisco this past May 2010.  I was going to a Japanese bath house with my old college roommates.  I'd been naked around them many, many times--including post-surgery (we all rented a house and went skinny dipping in the hot tub).  But this would be the first time I would be naked not just with them but in a public space with other women--women I didn't know.  You can wear a bathing suit, but of the thirty to forty women I encountered at the spa, I'd say only about three women opted to wear a bathing suit.  Everyone else (as I figured they would) were naked.  I had brought along my bathing suit and just assumed that I'd be one of the few women going clothed, but when we were in the locker room and I started getting out of my street clothes, I just simply put on my robe without the suit and walked out with the rest of my friends.  And while I was initially self conscious, I quickly forgot about my breastless difference from the other breasted women and just enjoyed being in so much water and steam and with my very dear and close friends.  It might have also helped that without my glasses, I'm blind as a bat so I couldn't see if anyone had a weird reaction to seeing me and my missing breasts.

The last milestone just happened in November.  I was attending a conference in San Juan Puerto Rico (The American Studies Association--yes, it does sound like a boondoggle, but I was actually on two panels).  A group of friends rented a set of condos a block from the beach, so we were constantly going back and forth between the conference site and the beach.  The friend I was sharing a room with is someone I've known for nearly a decade, but we had never really lived together like roommates before. Nevertheless, we're very comfortable with each other and early on I asked if she minded if I just walked naked from my room to the bathroom (easier than doing the towel thing--and I suppose I'm outing myself, but I do walk around naked in my house -- with the windows shut of course -- if it's just easier going from one room to another).  Anyway, it wasn't until after I returned home that I realized this was the first time I had been naked around someone new when I didn't ask them if they were uncomfortable seeing me without breasts--where I didn't think of my body as different from my friends' bodies or needing to be explained or accounted for in any way as different from them.

In other words, I had normalized my breast-less state.  I forgot about my breast-less difference.  I was living my life and thinking of myself as Jennifer rather than Jennifer without breasts.

So there you have it.  I'm sure there are going to be more moments in the future where I feel self conscious or where I second guess myself on being in a locker room.  The above three milestones all occurred in very private spaces or with very close friends.  But what has surprised me is how quickly I've adjusted and how I'm not sad about missing my breasts anymore.  I am not glad not to have breasts, but among the things I love is not wearing a bra while jogging, not wearing a bra period....OK, so that's it.  Not wearing a bra.  Still, the list of things I'm sad about (sexual pleasure) is manageable (we can derive sexual pleasure in so many different ways--and honestly we are such a breast fixated nation, in some ways this is just an exercise in healthy diversity of sexual practices).

This is my new normal and it feel comfortable to me.