Existential Crisis

I took a little break from this blog.  Actually, I took a little break from all things BRCA related.  I hid all of the Facebook groups I belonged to, logged out of my @bloggingbrca twitter feed, and stopped reading blogs.  Why?  I was becoming kind of obsessed.  It was all I was thinking about.  And I had all this surgery for precisely the opposite reason – so I could stop worrying about all of this.

Part of it was an ego thing too.  I started reading some blogs of BRCA+ women who’ve been writing for years and years – some of the first people who went public online about their BRCA status and prophylactic mastectomies.  I saw all of their followers, comments, likes, their press releases and news interviews (although I should say, only about three people of my friends/family know about this blog, so I’m losing out on a lot of traffic right there – if only I’d let my mom in!).  I began to wonder if I really was adding anything new to this conversation, or has it been going on without me for a really long time.  What is my point here?  I was having an existential dilemma about blogging.  Kinda pathetic.  And then there was all of this news about whether DCIS is really cancer.  I started to feel really embarrassed – I have said I had breast cancer, when maybe I didn’t really.  I always mention it was only stage 0 (and I add that this is why mammograms are so important!) and that I had no treatment, so it was practically nothing.  But I started to feel displaced – survivor? previvor?  I’ve said I don’t like either of those terms and I don’t use either to describe myself.  But even if I wanted to claim one, I don’t know which one I am.

So I took a break from the whole thing.

Obviously, I’ve decided to come back though, and there are two main reasons.  The first is that I do want to help other people, and if any one person reads this and comes away with something useful, then I’ve done my job.  The second is purely selfish – it’s cathartic, and it helps me exercise my writing muscles.  Right now, I should be reading student papers and responding to them, or I should be doing research and writing about it.  But I’m not.  So I need to keep my muscles moving – my brain to my fingers to the screen.  And I do it publicly for the first reason I mentioned.  It’s kind of a cycle.

When I last wrote, about three weeks ago, I was headed to see my gynecologist and the surgeon who did my hysterectomy.  Both appointments were sort of deflating.  Dr. Balk said I could stay on the estrogen patch for a few years, and we’d keep evaluating.  She said I should get used to the idea of having mood swings.  As someone who’s been on antidepressants for almost 20 years now, that’s not something I really want to get used to.  I like the somewhat numbing feeling I get from my meds.  I like that I can have rational emotional reactions to things and not get hysterical.  So that upset me.  My appointment with Dr. Sukumvanich was even worse.  He basically just gave me a rather quick and far from friendly pelvic exam and said “see ya later.”  He answered my questions very cursorily – I asked him about all of the items listed on my pathology report and he said that none of them indicated cancer and that’s all he cares about.  Ok then.

In the meantime, I’ve started having a lot of sadness when looking down at my belly – my poor, tortured belly.  I have the hip to hip incision with its lumpy purplish scar tissue; three small scars from the hysterectomy instruments; a scar all around my belly button, which is now long and thin and seemingly bottomless instead of round the way it used to be; stretch marks from being overweight, carrying a baby, and having my whole abdomen stretched during the DIEP procedure; an estrogen patch; small squares of residue and dirt from where the previous estrogen patches were (nothing seems to remove this residue).  I just feel like my belly has become the center of everything.  My pants don’t stay up, my underwear digs in, and in the evening after I’ve been running around all day, I am sore like my stomach is being squeezed.  It’s sad.  I feel sad about it.

On top of that, I’ve been having this strange sensation of hot fluid running through my right breast.  It feels like there’s lava in there flowing back and forth from my breast to my armpit.  I emailed Dr Gimbel about it and he says it’s probably nerve regeneration.  It’s a really bizarre feeling that happens several times a day.

In good news – we moved into our house.  Yes, we finally own a house.   It’s been really nice, and we’re looking forward to fixing it up a bit.  Our son is thrilled to have his own toy room filled with all of his trains, and we are happy to have central air conditioning!

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3 comments

  1. My doctor recommended I be tested for BRCA because I got cancer young (ha! I was fifty, so perhaps they meant young-ish?) and there was a history of the disease in my family on both sides (several aunts got the disease at a young age). However, I was fortunate, and the tests came back negative. Still, I had breast cancer that had traveled to at least one lymph node. I chose a mastectomy and chemo over a lumpectomy, chemo and radiation, and had an immediate reconstruction. Also, because of the lymph node engagement, I had an axillary lymph node dissection, which basically means they take out as many lymph nodes under your arm as they can find. Like you, I have lots of scars and newly designed belly button. I started blogging about it for the same reasons as you. It was/is cathartic, and I thought maybe — just maybe — I could help someone (somehow) by sharing my experience. I say, don’t worry so much about the labels (DCIS being cancer or not), if you have something to say, say it! Meanwhile, I will send you my hope that you stay cancer-free. Hang in there.

  2. Late comment here, but I think that there are probably a lot of women in your situation with DCIS who don’t know where they fit relative to C and survivorship. DCIS accounts for 30% of new BC diagnoses, so that’s a lot of liminal women! Whether you know it or not, you speak for them.

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