Tools in my box

We're back from vacation. It was really nice, but DI had to give me a talking-to at the outset because I was having a really hard time putting cancer away . . . it's a freaky time for me. I know what's ahead, I'm dreading it and feeling scared by it, and yet I look like a completely normal person with all the trappings of, well, a wonderful life. And while I realize, yes, despite having a double-mastectomy scheduled in 8 weeks it is a wonderful life, I'm not feeling so wonderful sometimes.

This is how it goes: You're hanging out with family on the beach/you're at a party with people you like/you're shopping with a friend/you're at dinner with your partner and all looks great, you're having - FUN! But in a quiet moment, your mind goes to the Dark Place. It's the place the mind likes to hang out after hours, too, when you're alone or things are quiet. It's the place of dread, fear, stomach-turning thoughts about . . . whatever.

These are the myriad random things I've worried about lately:

1. My surgery will go poorly and I'll have to deal with [insert some major complication].
2. I'm going to have to surrender the care of my family and home to others for a while - and the time is undetermined. I can't stand ambiguity, especially when it comes to household/childcare logistics.
3. I'm going to have to give up working out for about 8 weeks. I've been working out pretty much every day since March, 2011 and I see great results. This is going to set me back.
4. I won't be able to prepare food for quite a while - cooking from scratch is very physical and I have some very heavy pots & pans . . . I'm going to miss my freedom and creative time in the kitchen, not to mention all my greens and salads.
5. I might not even be able to open the refrigerator myself - it's got a crazy-strong seal on it and I've been told that even things like child-proof caps on bottles are off-limits.
6. My daughter's going to witness my surgical recovery and I don't want her to be scared, or worse, scarred.
7. I'm freaked out about the drains that'll be in me for at least a couple of weeks.
8. I can't drive for a while after surgery - again, the dependence thing.
9. I need to learn to wash my hair with my arms trapped at my sides because I can't raise my arms up for weeks. Forget about blow-drying.
10. I have to find decent-looking button-down shirts to wear for a good long while - no arms up over the head.
11. I hate sleeping on my back, and that's gonna be my only option for a while.

It's random, no? It's anxiety, all free-floating and ruthless. It's in the background, all the time, and it's unhealthy. Especially for 8 weeks. But luckily (what?) I've done this before, and I've got tools.

My tools are tools you can use any time you're faced with worry, and one of 'em I've used for years and years and years: it's exercise. Those who know me know that I'm religious about my workouts. Whether they're low-key (I'm a Pilates convert after an almost 2-year bout of arthritis that left me unable to do anything on my feet) or high-energy (I'm a former running addict who loves to blow it out with cardio of all kinds, just low-impact now in my middle age), they clear my mind and make my body feel powerful. And at a time like now when my body's in trouble, a powerful feeling is very, very good. I've amped things up now, pre-mastectomies. I'm in training - want to join the Mastectomy Team in Training (yes, M-TIT)? You can find me on Social Workout logging my daily devotional.

The other tool I've rediscovered is meditation. Yes, you read that right, this former litigator meditates. It's about 180 degrees from anything I'd have anticipated for myself, but at the outset of Cancer Round I, I learned to meditate and it helped me immensely. To my time-tested Relaxation Response (20 minutes of focus on breath and clearing my mind), I've added some visualization . . . to counteract all the negative thinking I've been doing about my surgery. Like athletes, housewives about to have their breasts removed can take themselves through the whole sequence of events w/a positive, winning spin - and there are studies that show that this does improve surgical outcomes. Whether it does for me, or not, it's improving my day-to-day life as I sit, stuck in this holding pattern, waiting for The Big Day.

xo,

Sarah

A very important date

Taking time out from some much needed R&R to report that my surgery date's been set: September 19th, 10:00 a.m. Deep breath.

Not thinking of details and logistics now . . . putting off all planning for the time being and setting my sights on fun, sun & family. The foobs'll wait. For now, there's fun to be done!

xo

Sarah

Mulling

Not wine, choices. Saw the plastic surgeon yesterday (we'll call her PS).

I'd like to preface this post by saying that each woman needs to make her own choices when it comes to breast cancer treatment - reconstruction is a very personal choice and everyone needs to make sure that the path she chooses is one she can live with . . . so there's no judgment here re what other women have chosen to do or not do . . . my opinions and choices are for me, and me alone.

Back to the appointment recap. It went well, and I'm happy to report there was almost no surprising information disseminated (read: my sleuthing over the last few weeks paid off in spades). Really, the only thing that stands out for me is a stat she dropped. She only uses saline implants in 1% of her patients. Why? Because silicone provides a much more natural feel and a better cosmetic result in reconstruction cases (versus augmentation). Crap.

DI and I got to feel both (although they had to search for the saline one and it was a bit leaky and had bits of mold floating around inside - really not on equal footing w/Mr. Saline). Have to say silicone felt great - juicy, fatty - well, like a breast, really. Saline was more sloshy, firmer, more water-balloony.

But.

Some of you know me from way back. And for those that don't, here's an ironic tidbit about me. When I graduated from college, I didn't know exactly what I wanted to do graduate-school-wise. So I met with this great career counselor guy, and though a series of meetings, we came up with my combined JD/MPA degree plan. I actually never thought I'd end up practicing law. I thought I'd go to DC and become a policy analyst. How'd we come up with this plan? It was the early 90's, and the breast implant controversy was raging. I was HORRIFIED by what I read and saw regarding silicone breast implants. I'd been a Women's Studies (and Sociology, double) major undergrad and was passionate about all women's issues. The silicone implant fiasco fueled my fire for graduate school . . . and now, 21 years later, I'm sitting in my kitchen researching them, seriously contemplating whether or not to put them in my own f-ing body. Life's a tricky bitch, no?

Sigh. Since coming home yesterday, in between packing for vacation (it's really all I've ever wanted) and policing my 7-year-old, I've found a few things out. One, as PS did point out, the new silicone implants are better than the ones in the early 90's - the sacs are thicker so the rupture rate is lower. But, the tricky thing with silicone is that you don't often know when they've ruptured . . . the silicone gel inside is ooozy and your breasts won't necessarily change shape. Sometimes a hard mass will tip you off (your body reacting to the silicone - sounds fantastic). The FDA recommends MRIs at different intervals to check for rupture. But the rate of rupture detection via MRI is only around 80%. Yowza.

And then get this: if your silicone implant ruptures and the ooze stays in the scar tissue "capsule" that's formed around your implant, you're excited (note how the bar for happiness gets lower and lower). Because what you DON'T want to happen is for your implant to rupture and for the ooze to get outside that capsule and migrate around your bod. Into your lungs, your lymph nodes, etc. Silicone's not inert. It's an active compound and it can do crappy things to you.

Yes, yes, there's never been anything definitive that says that all those women complaining about auto-immune issues caused by their leaky implants were right. But there's a lot of anecdotal evidence there that says they might be. And the data the manufacturers has presented is sketchy. And again, if you know me, you know my guarded stance with respect to medical device manufacturers and big pharma. Let's be clear. Big pharma and medical devices have saved my life - were it not for the mammo and subsequent toxic cocktail of drugs I consumed in '01, I would be six feet under today. But all of it smells a little rat-like to me, and I don't like rats, and I especially don't want two implanted in my chest.

So are saline 100% worry-free? No, of course not. The saline is encased in a silicone baggie. And they will need to be replaced at some point and are susceptible to rupture too. But the rupture part is so much less worrisome: if saline implants rupture, your breast deflates. The saline gets absorbed by your body, and your PS will do a day surgery to pop in a new implant.

Really, as I type this, I know it sounds like I'm answering my own question. PS said she'd happily do saline for me, she just needs me to know that I might not be as psyched with the results. I'm thinking that I've got enough to worry about without putting even more toxic crud in my body. I worry enough about my health as it is: that is the curse of the post-cancer life. If you're lucky enough to make it through to the other side, your burden is worry. I'd like not to add silent seepage to my list. I will, however, give silicone its due - more research to do, more women to talk to. I want to hear from women who might've struggled with this decision, and about why they ended up choosing one or the other. The great thing is, I still have time.

So here're the deets as we know them so far:

• trying to schedule the surgery for mid-September

• surgery will last ~5 hours - breast surgeon will do mastectomies first, then PS moves in and does the reconstruction

• I'll be inpatient 1-2 nights

• PS will insert 4 drains, two on each side

• usually first 2 drains come out after week 1, second two after week 2, but it depends

• NO lifting or strenuous physical activity for 6 weeks. No arms over the head, lifting anything heavier than the Sunday Times, etc. The more I can stick to this, she says (could she sense she had an over-achiever on her hands?), the better my recovery. If I play fast 'n' loose, I can set myself back even further (and have implants migrate to neck or belly - now that would be lovely, wouldn't it?)

• no driving for first week/while on narcotics

• I'm going to need to take up meditation or something just to deal with not being the master of my domain over here . . . but it'll be a good life lesson for me, don't cha think?

Phew. I've been laser-focused on breasts, both real and fake in the last week, and I will admit to you that it's been a rough week. I think that Cancer Round II is much harder, in some ways, than Round I. I know too much. I've seen friends with great surgical outcomes, and friends with bad ones. I've seen suffering and I've seen death. A few deaths. So while PS dismisses concerns re silicone seepage and offers super stats on the success of this surgery, I feel the burden of my experience. Because I know that when N=1, all the stats in the world don't make a whit of difference. It's me that counts.

xo,

Sarah