It was a crazy week last week so I didn’t post about this as promptly as I wanted, but better late than never.

I had two follow up doctor appointments last week, one on Monday with Janet the plastic surgery nurse and one on Friday with my surgeon (Dr. Ewing, the mighty team leader). Janet took a look at all my incisions and pronounced me “good” and said everything appeared to be healing up well. She told me I could lift a little more (10-15 lbs instead of 5-10, which means now I can finally lift my handpan, though I should still be cautious) and reach a little farther over my head (120 degrees instead of 90) and cut down or cut out the ibuprofen any time I wanted. I am still supposed to avoid any kind of strenuous activity or exercise that would get my pulse rate up too high (“have Catholic sex”, she said, which I took to mean let someone else do all the work) for another few weeks. I will go back next week and get the remaining stitches out, and by New Year’s (six weeks out) I should be officially finished with this recovery period. So that’s all good news.

The follow up with Dr. Ewing also went well, but as seems like the tradition now with these appointments, it also gave me some new information to think about. Dr. Ewing went over the results of my pathology report with me (there wasn’t really that much to say other than “all clear and yes, the tumor still tests as estrogen/progesterone positive”) and we talked about the recovery issues some more. She said I could stop the antibiotics (yay) and gave me a referral for physical therapy to deal with the “cording” (i.e. scar tissue) that I was feeling in my armpit, though she also said that the cording would eventually resolve on its own. She told me not to worry too much about lymphedema now, since if it was going to show up at all (which she said was only a 2% chance...I didn’t realize it was that low) it wouldn’t be for another two years. I didn’t realize there was such a lag time there either...I thought it was something that would show up during recovery but apparently I was wrong on that one too. But I’m happy to put this worry to rest. I didn’t get lymphedema last time I had lymph nodes removed and with only two nodes removed this time I’m feeling optimistic I won’t this time either.

Then we started talking about next steps, and here’s where it got interesting. I already knew that the next step was going to be talking to a medical oncologist about hormone therapy (i.e. Tamoxifen, which removes all estrogen from the body and therefore starves any new cancer before it can go anywhere) and the possibility of chemotherapy (or not). Dr. Ewing said that there was an additional test they could do on the tumor which she was sure the medical oncologist would order but she wanted to order it now just to get things going, and because she was thinking about something else. That test is called an “oncotype”, and would give us more information about the specific type of tumor mine is (e.g. aggressive and fast growing, or lazy and slow growing, or anywhere in between). The hope here is that unless it proves to be a particularly aggressive or fast growing type, there will be no need to further “salt the earth” with a round of chemotherapy. I should have the results of that test back sometime around Christmas, and I have an appointment with the oncologist scheduled for the first week of January to talk about all that.

But then Dr. Ewing said that she was thinking about something else, but wanted to caution me that what she was thinking about was NOT “standard of care” nor something she had any data whatsoever about. But as she put it, “this is how we push things forward.” What was her idea? Her idea was that if the oncotype test came back with a type that was on the lower-risk side (e.g. lazy/slow), that perhaps I might want to rethink the rush to the double mastectomy. Given that my tumor is estrogen/progesterone responsive, what if, she asked, instead of doing the double mastectomy now, I could instead leave things as they are and commit to taking Tamoxifen the rest of my life? Her thinking here is that although a double mastectomy significantly reduces risk because it removes almost all the growing ground for future cancer cells, it still doesn’t remove it all (since even with mastectomy there is still some small amount of breast tissue left)—that’s why the standard procedure is to put a patient on Tamoxifen or similar hormone therapy for 5-10 years afterwards (5-10 years after a cancer diagnosis is the prime danger zone for reoccurrence). But if Tamoxifen alone reduces risk significantly enough and the oncotype also reassures us that any recurring tumors will not be immediately dangerous (and therefore easier to deal with if they do pop up), perhaps the risk reduction would be equivalent enough to the double mastectomy to consider that instead.

I’m not sure how I feel about this idea yet. Of course I like the idea of not having to have the mastectomy and reconstruction surgeries. But I have no idea what decades of Tamoxifen will do to me (I don’t even fully understand yet what the downside of taking it “just” for the usual 5 year period is beyond just “early menopause”--that’s something I hope the medical oncologist will be able to articulate for me). Dr. Ewing said she had no data. I’m not sure that hormone therapy like this has been around long enough for there to even have been any long term studies of its effects. I guess what it really comes down to is looking at the risk percentage numbers of various options and then re-evaluating what my own personal risk tolerance is. In general my attitude this whole time has been “hell no I don’t ever want to have to go through this again, and anything that will significantly improve my odds of never having to do this again is something I want”. Hence the decision to do the double mastectomy, because that certainly gives me a big boost in the amount of risk reduction which I need to offset the boost in recurrence risk caused by my previous Hodgkin’s radiation treatments. On the other hand, as Dr. Ewing also pointed out, the reduction alone does offer some risk reduction (less boob=less breeding ground for new cancer) and a continuous salting of the earth with Tamoxifen may be enough to bring that risk down as well. The 100,000 dollar question is, are the as yet not fully understood long term effects of Tamoxifen (and zero estrogen/progesterone) bearable enough to make that option more attractive than the known short and long term effects of the mastectomy/reconstruction process (which, let’s not forget, includes further surgeries down the line since implants don’t last forever)? I am looking forward to the conversation with the oncologist in order to find out more information that might help me think about all this further.

And now for the feels you’ve all been waiting for (if anyone has even read this far). First off: goddamn, I am so sick of uncertainty and all this difficult, high-stakes decision-making. Every time I think I’ve finally made sense of what’s happening and decided what will be best for me, things change. Yes, yes, I know that’s just like life, but that doesn’t mean it’s comfortable or that I like it. In fact, I hate it. I feel this sense of crushing pressure that I MUST MAKE THE RIGHT DECISION and anxiety that if I don’t, I’ll die (or at least be damned uncomfortable and/or regret it). I’m trying to hang on to the gratitude that at least I have top-notch professional educated doctors who are helping me get cutting-edge care and giving me options and control over my own destiny rather than just dictating what happens to me, but still, it’s hard to have this much power and responsibility for my own care.

The other feels I have to mention in the spirit of full disclosure are the ones that have to do with my new boobs and my new body image. It was hard to know how I was feeling about all that while I was still so swollen and stitched up and while I was still worried about the pathology report and whether or not I was in additional danger, but now that things have healed up some and the immediate life-threatening risk has proved to be less urgent, my brain can turn to lesser concerns and smaller griefs that were postponed. So let me be honest here, since honesty and “keeping it 100” is what I’m trying to bring to this whole process: I don’t like the new boobs. Even though they’re not quite done healing, and even though they’re my real flesh and not implants, they feel like frankensteined, half-transformed, and only semi-real boobs to me. They’re too small and they’re too high and they’re too taut. They’re triangular. The nipples point forward and the boobs point to the outside and I don’t have cleavage unless my bra shoves them together (plus the cleavage is one third the size I’m used to). I have been looking at myself in the mirror and I don’t like the way I look. There’s too much space between my boobs and my belly button. I have changed from an hourglass to a pear figure. My stomach sticks out way past my boobs and I feel even yet more bottom heavy without something to balance me on top. Actually I literally feel unbalanced, like when I was pregnant (but for nowhere near as good--or as temporary--a reason). I keep hitting the sides of the boobs with my upper arms, which is weird (not to mention painful). My shirts fit strangely now. Everything is just...off.

I’m not reassured by everyone’s chirpy, well-intentioned comments that these boobs are “beautiful” (every time I hear that my inner feminist whispers “according to whose beauty ideals?”) and that it’s so great to have such young-looking, full and perky boobs (did the old ones suck so much?) Even if I buy into the problematic beauty ideal, let’s face it, I’m a nearly 47-year old overweight mother of two. Boobs like this don’t look right on me.

Ok yeah, I’m still mourning.

And yet I feel selfish, and ungrateful. Here I am alive and mostly well, with all new boobs and no cancer, what am I complaining about? I guess I just need to keep reminding myself that of course change is hard, and that acceptance is a process and a practice and there’s no rush and there’s no final destination. So here we go ‘round again with the self-love, in the usual spiral dance. It’s hard now, but hopefully it’ll get easier again like it has before. Just gotta keep dancing.