What to expect, and the fear of loss

Today I went to the Breast Cancer Coalition of Rochester (BCCR)'s "Brown Bag" support group - every Friday at noon people come and eat lunch together, and there is some question to spark conversation and people go around and answer it. It's a good way to connect and to feel a large amount of understanding support in one place, which is great. Lots of varying experience and wisdom all in one place. Generally, my preference is for smaller, more intimate support, but the reason I went today was to see if I could find someone who had had this latissimus dorsi flap reconstruction. Since I will see the plastic surgeon on Monday, I wanted a better sense of what is involved, so I would be better prepared to ask questions. (Ever the student...) Turned out no one there had had one, but I was put in touch with someone who had - in fact, she had it twice, and the second was with my Dr. Skinner and with the plastic surgeon I will see on Monday - she was in fact his first of this sort! (Yikes, way to be a pioneer!)  So this evening, I gave her a call to pick her brain about what to expect.

She both calmed and terrified me. Well to be fair, I was already pretty terrified. But just being able to ask her some of the nitty gritty things was really helpful. Obviously every person's experience is different, but based on her experience, here's what I can expect:

She had drains in for 3 weeks. She said she pushed a little too hard and was active before she should have been, and as a result she was draining a lot of fluid. Maybe if I follow the rules this won't happen. She said she would definitely take 6 weeks off at least, maybe stretch it to 8 - she took 8 the first time, and 10 the second because of some healing issues. She's a nurse, so her work requires her to be on her feet more than mine. I was thinking about taking a few weeks solidly off, but then maybe doing a part time thing, writing sermons and things from home, going in for Sunday worship... But it sounds like maybe I shouldn't count on that. Don't push it, Johanna, honestly. (Luckily, I have a fiance - or will he be my husband by then? - who will not let this happen, and a couple parents who will lovingly dote on me on as long as is possible for them to be here!)

This bit was bizarre - because they are taking a back muscle and suddenly making it a boob, the muscle gets confused. It still thinks it's a back muscle. So she said she would be working in the garden weeding or something, and where normally her back would ache, her boob would ache. "And I'd get a Charlie horse in what should have been my back," she said, "and be rubbing my boob out in the garden!" This is so weird, this procedure. Golly.

Similarly, because back muscles are used to working a lot harder than they do when they are boobs, the muscle starts to atrophy, and the boob consequently shrinks. I'll be interested to hear what the plastic surgeon has to say about that.

She thought that once I'm healed, I would have no trouble playing soccer, since it doesn't rely on arm muscles. She said, "After 8 weeks or so..." but I reckon I'd give it a bit more time than that! Yeesh! Luckily, 8 weeks will put me in the middle of a season anyway, so maybe I'll shoot for the fall season. That would be 4 months. We'll see. :)

I asked if the surgery were in May, would I be able to lift my arms high enough to dance with Michael at our wedding in August, and she said yes. Hooray! Suddenly everything seems better. I'm also very glad I didn't choose the wedding dress with the deep, open V in the back, especially since I'm not wearing a veil! Divine intervention at David's Bridal...


As I have talked to people about this, I find myself growing a little encouraged, but mostly dismayed. Even though I know in my head that this is a major thing that is going to leave my body different, and I will just have to get used to that, there is some part of me that is just unwilling to give up what I have come to know about this body. I prefer to believe I will come out the other end just as good as new, even though I know I won't. I am losing a body part, but that isn't all. It feels like each little thing I'm losing, I have to grieve for. I may not be able to sleep on my stomach anymore (I'm normally a side sleeper, but sometimes end up on my stomach). This one little thing is not so little when you consider it happens every day of my life! And when I imagine it, it seems completely unacceptable. Or I can't buy a cheap swimming suit at Target, but may have to buy a special mastectomy suit - oh horrors! Especially when I'm pregnant some day, my one breast will swell and the other won't, and I'll be super uneven - what a vain inconvenience! Each little thing, I feel like I have to process it - to the point where I'm not even sure I'm grieving the loss of a body part anymore, but more all the things that losing that body part mean for my way of life.

I suddenly just remembered something a pastor/professor talked about in a workshop I attended. He spoke about change in the church, and people's resistance to it. "People don't fear change," he said. "They fear loss." Yes. This applies here, too. I'm not so much afraid of the inevitable change in my body as I am afraid of losing what I'm used to, my habits, the way I feel things, the comfort I currently enjoy. The new Johanna will be different than the current one, no doubt about it - I'll have a back muscle for boob, for goodness sake! And it is hard to imagine that the new Johanna will feel nearly as good as the current one. I don't want to lose current Johanna. I was telling Michael, this would be easier to comprehend if I felt some symptom, something I wanted to go away, something I wanted to lose. "After this surgery, you will: see better, walk better, think better, look better." But I feel, see, walk, think, and look just fine. On the other hand, "After this surgery, you're going to have a back muscle for a boob, and all the discomfort and inconvenience that goes with it..." That just isn't very convincing.