Thursday, October 28, 2010

Around the Bend

Mastectomy. Though I won't know for sure until November 1st's biopsy results come in, that's what I'm expecting I'll have to face two weeks later. Have I told you that surgery is scheduled for November 15th? What kind of surgery is yet to be determined, but this is what I expect. A call from Dr. Z yesterday confirms this; she wanted to prepare me for the possibility, told me to think about what questions I might have.

I read about mastectomy in Dr. Susan Love's Breast Book last night after J~ fell asleep, and cried silently over the details. There will be pain, there will be rehabilitation issues for my arm, and a long, slow recovery — my doctor tells her patients to expect to be out of work for six weeks. There will be permanent numbness where the breast once was. Something akin to phantom limb, which I'll call phantom boob, occasionally happens. Some people have nerve damage that leaves them with permanent pain. A huge swath of flesh will be taken, tunneling up to the collarbone and into the armpit. I've got little more than two weeks to wrap my mind around this.

Then there's the question of reconstructive surgery. Though I'll hear out a plastic surgeon, I expect I'll decide that this is not for me. I don't dye my hair, I almost never shave my legs. With the exception of my wedding ring, I don't wear makeup or jewelry except on the most special of occasions. Of course it's a very very individual decision and I would never fault those who choose it, but the extra surgeries and the possible complications and the very idea of a prosthetic that I can't remove at the end of the day does not appeal to me in the least.

I've already Googled clothing for women who've had mastectomies and so far I've not come across what I want - bras and bathing suits that will support my remaining breast (assuming I have a remaining breast) without gaping on the other side, or filling in the asymmetry with ruffles or padding. I want fitted tops that don't disguise the truth. I think of Aimee Mullins running on her high-tech carbon fiber cheetah legs, and wonder - can't I be powerfully, bravely asymmetrical? Can't I have extra racing stripes from neck to armpit and leave it at that? (If anyone knows any resources for this kind of thing, please send them my way.)

Don't get me wrong, I'm dreading the stares and the discomfort I cause for others. I know this is not going to be easy. I've had a hard enough time in the locker room already, feeling shame and inhibition over the bruising from my first biopsy.

I also worry about balance and the health of my back. My breasts are not small, the weight differential will not be insignificant.

There are a group of women I swim with regularly. I think I will ask them to come to my house and be with me and my new appearance before I go public with it. I'm sure they will be wonderful, and I'll probably weep. I'd want to also give them a chance to talk and think about how it feels to them to see me this way. We all fear breast cancer, and by "we" I mean all of us women. And now I'm going to be a living reminder of that fear. I want to be okay with that. And I'll need that human moment before venturing back into the world of strangers with all the pretense that will surround their feelings.

I'll get a lightweight prosthetic and special bras with a pocket to hold it in place, and once once the surgery wound is fully healed, I'll get a silicone prosthetic too, the kind that adheres tightly to the skin. I'll wear that whenever I want to simply fit in. And I'll keep in mind what my sister-in-law said: I'm allowed to change my mind.


Paula said...

I'm sorry that you have so many things to think about that people would rather not ever have to think about. Getting rid of the cancer is the main thing. What people think of how you look should not matter in the least as long as you are comfortable with yourself. Being healthy and alive do matter!

You always seem to have such clarity in how to be yourself. You will find a way through all of this--bras and clothing and what to wear at the pool, too.

My thoughts are always with you.

dillard said...

What an amazing post. You have this wonderful practical nature that just deals with thing as they come. You have such grace under pressure. Thanks for your words.

Anonymous said...

You can change your mind. As many times as you like until D-Day. And you can even change your mind later, after removal. If you decide at age 60 you want a breast implant, it's up to you.

Your practical nature and self-knowledge will serve you well in the coming months.

I'm so sorry about all of this. Keep writing when you are able.

Mary said...

LOVE the idea of the symetrical strips on the bathing suit. All the more power to you. I will do some research to see what I come up with.
Can't WAIT to see you in November.
Oh, and by the way...F**K this cancer. It's not stronger than you. It's simply not. xooox-M-

Liz Sousa said...

Amy, I was wondering when to send you this. Clearly it should be today.

The second item down is a poster called "Tree" of a woman with a beautiful tattoo over her mastectomy scar.

"I am no longer afraid of mirrors where I see the sign of the amazon,
the one who shoots arrows..." --Deena Metzger

Anonymous said...

Just sending you good thoughts and hope that all this uncertainty will resolve into something that you'll be able to manage with lots of love and support around you. I'm so sorry you're having to deal with this stuff. You're a strong woman and you can do this...

Anonymous said...

Hi...Thinking of you all the time. I have no doubt you'll be okay in all ways. You have remarkable grace and dignity, combined with inner strength and sense of humor. (It'll be interesting to see how you compensate for the bouyancy issue in the pool!) You'll find your way through this awful time...wish I could help you. Kerry

Jeff E said...

Hi, Amy –
On a lark, I googled you and found your web site, etc. Was going to send you some email congratulating you on being a successful artist, etc, the typical stuff. (And, in fact, I do think that’s great and am happy for you about that.)

Then I saw this blog and realized you must be going through a *very* challenging time right now. So, for what it’s worth, just wanted to say I hope for the very best possible result for you, given the circumstances.

I haven’t done a lot of blogging/facebook pages. If you are curious, will be happy to catch you up sometime when you are past some of the major upcoming hurdles. (Obviously you have much higher priorities to deal with just at the moment.) My life seems to have turned out fairly “normally” (if there is such a thing). But, given the circumstances, I mostly wanted to sent my support and best wishes for what you’re dealing with right now. I remember you as a very kind and good-natured person, am I’m sure you have been a blessing for those around you (whether they realized it or not).

Take care of yourself and sincerely hope for the best,

Jeff (from back in the day at Hampshire)

Anonymous said...

How did the biopsy go?

Dagmar said...

You are beautiful, Amy. You are always beautiful. Always and always and always.

I remember after Gramma got her mastectomy, she showed the scar to us grandkids (all very young adults). It was a point of interest only. She was here with us! That is the focus of love.

And that is my focus on you. I celebrate your life, your survival.

My Gramma offered to sit and chat with you if you want to talk with a survivor who had all the treatments and did natural (dietary) treatments as well.

Hang in there, Amy. You are so loved.


caro said...

hello amy, re: clothes

have you come across yet? the line includes stuff like this:

sending enelots of mojo,
caro, longtime lurker from germany

Eileen Kaplan said...

Hi Amy.....I just arrived home after being interviewed on WPRO 99.6 Providence, by Patricia Raskin,Positive Living, about my book "Laughter Is The Breast Medicine." I am a bc survivor (biateral mastectomy) advocate,mentor and I am a keynote speaker always on my breast cancer soap box and would love to talk to you to just say hello, stay positive (as you are),kick the hell out of anything negative, don't let it creep into your life. Eileen