Wednesday, July 22, 2009

Bravery is in the eyes of the beholder

Lest anyone think I am braver than brave after my last post, I assure you I am as terrified as a woman could be. But more disturbing -- I am second guessing my choices right up to this last minute. I actually STILL have two mastectomies scheduled at two different hospitals – and one of them is next week…the other about a week after that. I’ve only met one of the doctors involved once and my second meeting with him is Thursday. I will have to decide after that.

A small part of my indecision is no doubt the sheer fact that I don’t want to do any of this at all, anywhere, anyhow. Who would?

However I also keep questioning myself on another front-- since I finally got somewhere on the nipple sparing after nearly giving up, maybe I should take a few last shots at conserving the breast in some way? Although that process is less clear in terms of simple solutions, have I tried hard enough to figure it out?

See, I could pick up the phone, call a doctor’s office and ask if they did nipple-sparing mastectomies without wasting my time with the ones that don’t. (a HUGE piece of advice for ANY woman facing this btw – even if you think you won't need one or aren’t a candidate you just never know and should have the option available from the start)

Anyway, to even attempt making a last ditch effort at breast conservation is not quite as clear-cut, sorry for the pun. There’s no one obvious surgical approach in my case, no simple question to ask with a phone call to hasten the process of elimination. It would be (and has already been) a time consuming effort of pure trial and error to find a doctor willing to consider it and then also willing to do something in a way that is acceptable to me – a combination I’ve not found or we wouldn’t be having this blog conversation AGAIN. I’d like to think that in and of itself gives me the answer…shows me that this is sadly just not a great option for me. But then I remember that if I’d given up on nipple sparing based on the same criteria I’d be having a vastly different procedure than I now have planned. And so I continue to wonder.

Right now there are two breast cancer surgeons I saw back at the beginning who would simply take almost a quarter of my breast and “rearrange” the remaining tissue as a solution. That just sounded vague and not very promising to me, which is why they were taken out of the running. They thought I was worrying needlessly, or a control freak, or not accepting reality -- take your pick.

The plastic surgery options for fixing any deformities after breast conservation are complicated, largely by the absolute need for radiation – if you conserve breast tissue you HAVE to have radiation.

(FYI, mastectomy alone is equal to conservation w/radiation in terms of survival, hands down, cold hard fact -- conservation w/rads only potentially raises your risk for local recurrence, and mastectomy doesn't elminate it, just reduces it.)

Radiation can affect cosmetic outcomes significantly or barely at all and there is often just no way to know – it’s the luck of the draw. The only thing clear is that if I were to need a mastectomy after all some time in the future the cosmetic outcome of that would very likely be compromised. Irradiated skin often doesn’t respond as well to the larger process of whole breast reconstruction.

Plus, about 40% of the time after they excise the tumors they find they don't get clean margins of cancer free tissue and have to go in again -- in the case of a wide excision like mine that could mean either major deformity or resorting back to a mastectomy anyway.

Bottom line – conservation, if possible for someone like me with multiple, albeit small tumors, has a variable outcome cosmetically. I don’t generally do well with vagaries like that, psychologically speaking…I’m guessing I’m not alone in that.

But then there is that one HUGE caveat that keeps me wondering if I gave up on it too fast, if I should try and roll the dice and see if I feel lucky – that caveat being I would likely have normal nipple function if I managed to conserve my breast. Not guaranteed…but likely. My breast could be disfigured to varying degrees, but it potentially would feel things, you know, in that special way.

Although maybe it’s an over simplification, from my perspective this has been like choosing between feeling good or looking good. Which is really more important? If I was devestated or self conscious about my breast’s appearance would it matter to me that it felt things…quite frankly would I want it touched, would I be inclined or able to enjoy it? Yet conversely, will looking sort of normal but feeling nothing always be like some sort of fake-out, a second-best facsimile that leaves me with a constant sense of disappointment or loss?

Yeah, I know, neither sounds all that hot to me either, but it's all I've got.

My husband will love me & want me no matter which way I go…it’s really about how I feel and what my reactions will be. I’m not sure I know myself well enough or can imagine the outcome clearly enough to answer these questions. And perhaps that is where the problem really stems from. After years of hiding behind obesity trying to ignore or distort my body and then finally coming to a healthier weight and state of mind by making peace with it, now I have to decide between marring it’s appearance or losing a pleasurable function. All while I face a potentially terminal illness, nonetheless!

And on that front -- you may be wondering where cancer comes into the equation and why it hasn’t more often. You may be thinking this is crazy, it’s gone on long enough – aren’t I scared the cancer is spreading its microscopic nastiness at this very minute while I write this???

No, I’m not. Breast cancer like mine (IDC, ER/PR+ HER2- no suspected lymph node involvement) is the type that 70% of all women who are diagnosed with breast cancer have, and it can take anywhere from 8 – 10 years to even become detectable…a few months more isn’t going give it time to grow enough to make any considerable difference. Not that one wants to take much more time than I have…I’m at the outer limits here, but not unsafe. So I could postpone any surgery for a week or two more for doctor hunting if need be – besides, it’s become my new hobby, haven’t you noticed?

Believe me, if you're half as sick of hearing about this as I am living it, I understand completely.

I could just say that, as one doctor told me, “Mastectomy is NEVER the wrong choice,” and take the next step as planned. I could choose to look better and be aggressive in my cancer treatment at the same time, eliminating the wild card of radiation, reducing possible local recurrence. It's very likely I will do that.

But every other minute I decide something else. In between that, frankly, I’m either crying or cleaning…sometimes both. It’s a brand new skill I’ve developed that I didn’t know I had, I can clean and cry my eyes out at the same time.

Yeah, okay, you know what? After reading this maybe I am brave…I’ll give myself that after all. I'm fucking hugely brave. Take that, cancer.


Jean said...

Yeah, you are brave. You're pretty fucking amazing too. And I never swear, how about that?

Alison said...

I agree, you are a brave person. I am so amazed that you have had the wherewithal to do the extensive research you have. And, yet... I can totally understand why you have feelings to do more. Thank you for sharing your story.

~Tessa~Scoffs said...

You're brave. You're amazing. And dammit, this is so NOT FAIR! Thank you (again and always) for sharing your journey with us. It's probably not easy putting it all "out there" for everyone to read and comment on. Love to the kiddos. But I'm sure they won't know who I am. Just tell them "lots and lots of people are praying for our family."

La Belette Rouge said...

If I could have a tee shirt made for you it would say,"I'm fucking hugely brave. Take that, cancer." That is awesome and you are awesome.
Like you said on my blog, I don't have faith in much at this point but I do have faith in you. I really do.

Brenda said...

Its such a tough decision, I can understand why its taking you so long. I have to make myself not second guess my decisions. All along the way I have seen there are no pat answers and that the decisions are fluid. So you just have to go with your gut and find doctors that work with you and empower you in making some of the decisions. Its tough.

Imogen Lamport, AICI CIP said...

You are so BRAVE - I have no idea how I would be reacting if I was in your situation.



Chuck Dilmore said...

cut to:

Kayleigh effing BLINDSIDING her cancer
with a roundhouse to the temple..
just like she's imagined from the start.

cancer's knees buckle, eyes cross.

Kayleigh breathes deeply,
confident that all of her meditations
have come to fruition... healed. safe. alive. reborn!

a small crowd of Followers gathers,
sees cancer in a heap, unmoving... and
Kaleigh, bathed in golden light, energized.

this is the finish we've envisioned from Day 1.
this is what we see in you!
this is what you have shown us!

honored to be part of
the muscle you require
the tear you deserve to shed
the fear that looks in the mirror & see fortitude

we love you!
e v e r y o n e

Kayleigh said...

You all are amazing!

Waiting for phone calls and biting my nails at the moment, but wanted to at least acknowledge the support you wonderful people have plastered here for me. THANK YOU doesn't even begin to cover it.

Oh, and I sooooo WANT that T-shirt, lol!

sallymandy said...

God, how incredibly sobering your story is, that you're telling other women the day by day reality of what happens when one of us is diagnosed with breast cancer. The odds are good that a few of the rest of us will be someday, too. And you're telling us what we need to know. And if not for ourselves, for our other friends who will or do have it. It's so sad, Kayleigh. It just sucks. Life is a bitch. I'm so proud of you for not giving up or giving in.