Friday, January 27, 2012

making decisions

So, this is a post about homebirth. but before I talk about homebirth, I'm going to talk about breast cancer. Bear with me.

When I was newly pregnant with S, my mother (51 years old at the time) was diagnosed with breast cancer. An aggressive, fast growing cancer, caught early. She had a lumpectomy, chemo, and radiation, and was declared cancer-free. After examining our family history, which includes several great-aunts and great-great-aunts with breast cancer, along with various other cancers, she decided to have a genetic test run. They look for specific mutations on two genes -- BRCA1 and BRCA2 -- that are associated with extremely high rates of breast cancer. Mutation carriers have up to an 80% lifetime risk of breast cancer for women (6% for men) along with a very high rate of ovarian cancer and increased risk for various other cancers (melanoma, pancreatic, prostate, etc).

As you can probably guess, since I'm talking about it, they found such a mutation in my mother's DNA. (On BRCA2, to be specific.) We found this out while I was either still pregnant with S, or she was a tiny baby.

This type of mutation isn't like cystic fibrosis and such where both parents have to be carriers for it to affect a child. If one of your parents has it, you have a 50/50 chance of having gotten that particular gene, too. And if you have it, you have it. My brother and I both got tested - it's easier when they know exactly where to look - and we both got unlucky. That means our daughters, 4 now between us, all have a 50/50 chance of having it too. S was 8 months old when I got my results.

There are a few approaches that genetic counselors suggest for BRCA positive people. The most conservative approach is merely increased monitoring. Starting mammograms early, doing MRIs as well. Having your tubes and ovaries out once you're done with childbearing is often suggested. (It reduces ovarian cancer risk, obviously, but it also decreases breast cancer risk because of decreased hormones that can "feed" breast cancer.) The most controversial, radical step that BRCA women take is double prophylactic mastectomy.

My mom just had hers done, less than 2 weeks ago. I'm helping take care of her as she recovers - mastectomy with immediate reconstruction, especially if they use your own tissue from your abdomen instead of implants, it is no walk in the park. It's major surgery. My mom was in the hospital 5 nights. She had 4 drains, still has 1 in. Her recovery will take weeks. And I'm in there, seeing the incisions, watching her barely move around, sponge-bathing her.

And I'm planning on doing this, myself, in about 10 years. If nothing drastic changes in cancer technology, of course.

While I sat in the waiting room with my dad as her 11-hour surgery progressed, I was thinking about how someone with BRCA mutations makes this decision.

You can look at study after study about your risk of developing this sort of cancer, and that sort of cancer, and how much you can reduce your risk by doing this or that. And it's important to do this research. It's also important to look at the risks and drawbacks of the interventions themselves. Could frequent and early mammography be harmful? How will losing my ovaries at age 40 affect my quality of life and my risk of heart disease and bone loss? What about hormone replacement to offset that a bit? What are the risks of the procedure to remove my ovaries and tubes (and uterus as well, most likely)? What are the risks and drawbacks of surgery to remove my breast tissue? Then you have to consider the emotional implications of various outcomes. How much do you think it will suck to get cancer, even if it's caught early? How much do you think it will suck to have biopsy after biopsy, or be told "we'll keep an eye on this area and look at it again in 6 months" every 6 months at your mammogram? What if you were unlucky in surgery and had [poor outcome x]? What if you were unlucky in the progress of your cancer, and you end up dead at 52 even with the recommended monitoring?

Theoretically, there is a "correct approach" that, implemented across the board, would extend the average lifespan of BRCA+ people the most, more than any other approach.

But practically speaking, when it comes down to someone making their individual decision, in the end, it doesn't really matter what the "correct approach" is. There are too many factors to consider for it to be that simple.

You don't get a do-over. You are an individual, not a statistical group. You have to assimilate the available information as best you can, digest it, and *make a decision*. And as informed as you can be, it's going to come down to this:

What makes you feel safest?

It may not be what is actually safest, in terms of your best chance to not die of cancer. Even though that is, theoretically, the yardstick everyone should use, right? Let's not die of cancer? But the steps you have to take to reduce your risk as much as currently possible may not be steps you are willing to take, for various reasons both empirical and emotional. The steps are not without their own risks and costs.

And I think, for the most part, that people inherently understand this when the decision is about surgery to remove your breast tissue. It seems to make sense that some people might decide to do it, and some people might not. That the accounting for you will be different from the accounting for me. That either way, the decision might end badly, with me kicking myself (if I'm lucky enough to be alive to kick myself) and wishing I'd chosen differently because oh crap, now I'm dying of cancer and if I'd just had the surgery... or oh crap, I've had 7 surgeries in 4 years to deal with complications from my reconstruction.... or whatever bad outcome might happen. And that I have to choose anyway and be responsible for that choice.

For me, deciding to plan a home birth after a c-section has been a lot like deciding whether or not to have prophylactic bilateral mastectomy.

It's friggin' complicated.

There are a million factors to consider. A million fears and what-ifs. I got to the point where I was scared to give birth anywhere. And then I sat back, realized I had to make a decision and own it, and I had to figure out where I feel safest. And just because I have decided that for now, I feel safest at home, doesn't mean I think you're an idiot if you decide you feel safest at the hospital or with a repeat c-section. And if I'd come down on the other side, it would be vice-versa.

There is no right answer, ever since our crystal ball broke.

It's not about the candles and the music and the coziness of being at home. It's not about bragging rights or "naturalness" or the "experience". I've HAD a c-section, and I know how much even a relatively uncomplicated one can suck. I don't want another. Nor do I want a dead baby. Nor do I want to die. I have done research, looked at arguments both for and against, and in the end I decided that if I go to the hospital, I'm very likely to have an epidural, and if I have an epidural, I'm very likely to end up with another c-section. I've weighed that against the small risk of something going terribly wrong at home that could have maybe have been fixed at the hospital, and then I've weighed THAT against the even smaller risk of something going terribly wrong at the hospital that could maybe have been avoided at home.

It's not simple math. It's not even complicated math. There isn't a solution in the back of the book to refer to.

It's a decision I have to make, and it's consequences I will have to deal with, either way.


um.... so yeah, i guess my posting rate is going to be about once or twice a year.

what's going on? after that last loss, we couldn't do any more ivf and didn't have any more samples of S's donor. so we switched donors and went back to unmedicated IUIs with charting and OPKs. our thought was, we would try for about 6 months and if it didn't work out, we were done.

the first cycle, the timing seemed great, my chart looked perfect, and i didn't get pregnant.

the second cycle, the timing was crap and my chart looked terrible. i tested while ML was out of town, at 10dpo, just to confirm it was negative... but it wasn't.

i held my breath for 16 weeks.

once i started feeling movement i started believing we might actually have another baby. after the last experiences, neither the positive test nor seeing a heartbeat at 6 weeks reassured me in the slightest, and even after seeing everything ok at 9 weeks and 13 weeks and hearing the heartbeat on the doppler, i still wasn't ready to actually believe. the anatomy scan, after i'd started feeling movement already... i went into it with a thousand times more dread than excitement. sure that there would be terrible news. but there wasn't.

even now, at 26 weeks along, with a genuine ruckus being kicked up in my midsection on a many-times-daily basis, i'm still waiting for a shoe to drop.

it's a girl.

a baby sister for S. her name will be A. her nursery is all set up, all S's old stuff brought out and ready. and i'm still terrified. there is no time when you can relax, when you're pregnant after loss. i'm trying to strike a balance between honoring that fear and where i've been, and also allowing joy in and savoring what will certainly be my last pregnancy.