Losing the last 13%

When diagnosed with a BRCA2 mutation, you are told there’s an 87% chance that you will develop breast cancer over your lifetime.  So you bide time while you figure out what to do.  When you are BRCA2+ and diagnosed with DCIS, you officially lose that 13% – the small bit of hope you might have been holding onto thinking you would get to be in the lucky minority.  You no longer have time to bide.  Instead, it’s time to act.

So I’ve been a bit frustrated by the many articles lately that have talked about changing the name of DCIS (removing the word “carcinoma” to eliminate the association with cancer).  The rationale is that too many women have needless mastectomies when receiving this diagnosis, and that there’s little research that shows that DCIS will become cancer.

My frustration is with the articles that do not mention BRCA mutations.  By not mentioning BRCA mutations, these articles (often written by doctors) lead women (even those with BRCA mutations) to believe that they’re making a cavalier and “hysterical” decision to have a mastectomy.  And, by changing the name, women with BRCA mutations who don’t have access to good healthcare professionals and genetic counselors, could be under the impression that DCIS doesn’t mean anything more to them than it does to the general population.

Below is a link to a storify of my conversation with a blogger from Breast Cancer Action.  I’m really impressed that they cared enough to respond to my tweet and to clarify their position.

[View the story “DCIS name-change debate” on Storify]

Moody

So I’m definitely moody.  I’m taking a little bit of this out on my mom.  I’m taking a lot of it out on my husband.  I guess I sort of feel like I should get a pass for a little while – like, I should get to act however I want and he should just take it for a few weeks until I get this figured out.  Instead I feel like he’s baiting me (I know he’s not, but it feels like he is).  Last week I got so mad at him that I texted him from our bedroom that he should not bother coming into it that night.  He slept on the couch.  This evening, he told me that I said something in a not-nice way, and boy did I lose my mind.  But he is sleeping in the bed.

Yes, he asks how I’m feeling.  Yes, he’s moving around the heavy boxes after I pack for them for our move.  But you’d think he could do something nice for me.  I bought myself a watch, for chrissake.  I ordered my own chocolate-covered strawberries (my aunt sent me money and said to use it for chocolate, because apparently she knows how this goes).  I’m not saying I want gifts.  I don’t even want him to do more than he does already (although I would like it if he perhaps googled “hysterectomy” or “surgical menopause” so that he has some clue about what has happened to me).  But I do want to be left alone.  I don’t want to have arguments.  And right now, he’s going to lose pretty much every one we have because I am irrational, and knowing it still isn’t helping me control it.

I see my shrink on Friday and a gynecologist who specializes in hormones next Wednesday.  Hopefully one of them will have an idea of how to prevent my impending divorce.

Ow

I’m in pain. There’s really not much more to say. I have abdominal pain that feels a bit like pms and a bit like giving birth. It’s probably the worst it’s been since I left the hospital. I took some Tylenol. I should remind myself it hasn’t even been two weeks. Hystersister discussion board members report this type of pain for up to a year. Yikes.

The Academic Side of BRCA

Well, it’s about time.  Something I never talk about on here is my work life.  I am a college professor – I teach composition mostly to first-year students.  As a professor, I’m required to do research.  Most of my research is about students and how they writing.  But, in my field, many people write about how other groups use writing.

So, I’m looking for people to tell me stories of how you’ve used writing to create relationships with other BRCA+ people. It occurs to me that I have gotten to know many women and their stories through writing, although I’ve never actually met them in person. If you’re interested in participating, please email me at bloggingbrca@gmail.com. Your work will not be published without your permission.

I especially hope to hear from some of my fellow bloggers!!

From the Outside In

If you search for “laparoscopic hysterectomy” on youtube, you’ll get a lot of videos that show the view from the laparoscope – the inside of an abdominal cavity.  You can watch as the instruments burn and tear away tissue while someone, likely not in English, describes what’s going on.  But I’ve been curious about how they start and end the whole thing – how are these incisions on my stomach so small if they put scissors and scalpels and cameras through there?  And how did they get everything out of there once they cut it away (I knew how but was having trouble visualizing it)?  Well, last night I found my answer.  A warning – I am pretty desensitized – human blood and guts doesn’t really gross me out (although I can’t watch animal blood and guts).  This video, however, did make me nauseous.

I still have some questions about this.

First, why is surgery so violent?  I’ve wondered this after seeing liposuction videos as well.  The way they cut, insert the instruments – nothing is gentle.  I’m amazed I don’t have more pain in my belly button or in the other abdominal incisions considering the way things were just shoved in there and pulled/pushed around.  I’m also amazed I have no hip or ankle pain after seeing the way my legs were strapped up into that contraption.  And I’m completely mortified to know that my entire crotch was hoisted up in the air for two hours, exposed to anyone who would have walked in/out of the room.

Second, how do they know they got all of the cells?  The way they snip and burn the tissue, it doesn’t look very neat.  I hope that this six minute video of a two-hour surgery just isn’t showing the part where they go in and really clean up in there to make sure all endometrial tissue has been removed.

Third, now I understand why I feel so gassy and have so much pressure in my pelvis – they pumped up my stomach like a bicycle tire!  But is there a reason that after the surgery, they can’t use the same instrument to suck out all of that extra air?  Crikey.  I’m also realizing that part of that pressure is probably soreness from the stitches.  That definitely didn’t look pretty.

When I had my DIEP reconstruction, I watched several videos before the surgery.  I was so fascinated by the whole thing and really curious to see how it was going to work.  Boy am I glad that I waited until after the hysterectomy to watch this video.  I can gaurentee they would have had to anesthetize me in the car on the way to the hospital if I knew what they were going to do when I got there.