One month out and looking good

After a doctor appointment marathon this week, I have seen everyone for my one-month-out round of appointments, and things are looking good!

And I, frankly, am BEAT.

Beat, but good. Everyone is very happy with my progress. The plastic surgeon said on Monday that everything is healing just right, and newbie boobie continues to be "perfect." The medical oncologist this morning said I don't need to see her again until next year (more on that later). The surgeon gave me some more info on the Tumor Board's discussion, and we talked about next steps more concretely. The occupational therapist said my mobility is great, ahead of schedule even, and I don't need physical therapy and don't need to see her again. Great! My energy level this week is better than last week, but I'm still trying to lie low and not push it, trying to remember that it is not only bodily healing I seek, but whole healing, and my heart has been through a helluva lot in the past two months. It is okay to take time to take care of myself.

Still, I have started working again, when I'm up to it. I'm answering emails, setting up meetings, reading some work-related books. A member at one church died this past weekend (at 102, I'd say she earned it!), so I'm working on the funeral, which will be my first full week back. There's also a baptism at that church on my first Sunday back. So, there are things to keep me busy, and I'm trying to sneak carefully out of hiding without overdoing it. The messages I keep receiving from concerned parishioners say things like, "We miss you! But please take care of yourself!" hence granting me permission not to push it, and assuaging my guilt about still being home when I feel like I should be working. (Johanna, you are working. Get over it!)

Okay, so our talk with the medical oncologist. She said she agreed that the mastectomy is a better preventative measure than the Tamoxifen, and especially since we want to try to get pregnant in the next few years, she said it was fine to leave my treatment at that. She also encouraged me to get genetic testing - whether or not I have the infamous BRCA gene mutation, there may be another one that would be of interest. After a fairly short talk, we left the office, but then she came chasing us down. "I just thought of something. Can we still talk?" She brought us to a consultation room. She said when we were talking, she still had DCIS on the brain, not invasive cancer, and was thinking I would have the mastectomy this summer. But she said if we want to wait on the mastectomy until October, it wouldn't be a bad idea to take the Tamoxifen starting now, taking a week break from it during the surgery, and then going back on until we're ready for kids. Basically the logic was, "It can't hurt." She expected the side effects would be fairly mild for me, probably just some hot flashes, a la menopause, and if they are bad, I can just stop taking it. It won't be as effective as it would be for five years, but even six months might provide just a little more peace of mind until mastectomy time. She suggested I talk to Dr. Skinner about it, and if I decide I want it, I can call her and she'll call it in.

So, on to Dr. Skinner, who was wonderful as always. (Seriously, who says that about their cancer doctor, whom they only see when they're talking about cancer? How much better it is to love your doctors!) That visit always starts with a short interaction with the aide who takes my vitals, and she is a hoot. She loves us, and we always joke around with her. We had her in stitches today, just quipping about our lives. She said, "You guys are delightful. I love it when you come in." Smiles all around! Dr. Skinner came in shortly and told us very carefully about the recommendation for the mastectomy and we just looked at her sort of blankly until we realized she was waiting for us to react. Simultaneously, Michael and I realized this, and said, "Oh, we're so there. We know that. No problem."

The mood lightened a bit and we just had a frank conversation about everything. I asked my three most pressing questions:

1) More information about the invasive cancer? For those who are interested in such things, it is IDC (invasive ductal carcinoma), stage 1, low grade (not aggressive). It's estrogen and progesterone positive, HER2 negative. (Those are all hormones, and being HER2 negative is good because HER2 positive cancers, about 10-20% of breast cancers, are much more aggressive.) It was 3mm in size, and likely started as DCIS. In retrospect, she said, they probably did see the beginnings of it on the MRI - something had been going on there, but because it seemed fairly stable, they didn't look further into it. But it had probably been developing for several months. In general, my left breast has been funky and weird, and three times the funkiness turned into cancer, so let's stop playing games.

2) What made the difference in the recommendation about my right breast? A few things. One is that invasive cancer is a game changer. Even with just that little bit, you don't mess around with it. Another is that a deeper conversation with the radiation oncologist indicated that my right breast wasn't as low risk as it might have seemed. There is also some research that shows that less radiation, as I had, causes more cancer than higher doses, because it is enough to damage the cells but not kill them, so they stick around and make cancer. Seriously? Hardly fair. So much for a protocol that was supposed to lessen long term side effects. (My Hodgkin's treatment plan had only been used for about 10 years, so they didn't know long term side effects yet, but the hope was with lower doses of both chemo and radiation, rather than higher doses of just radiation, I'd have lower risk of long term side effects like heart problems and future cancers.) Another game changer was three independent developments of breast cancer in the same breast in six months is something you don't mess around with. One, okay. Two, maybe. But three? No.

3) Last, we asked about Tamoxifen. Dr. Skinner said basically what the medical oncologist had said, that I could take it for a few months and not hurt anything, and maybe help, at least with peace of mind... or I could not take it and probably also be fine. The most important preventative is the mastectomy. So do we go all the way and take Tamoxifen too? I dunno. I'll sleep on it.

After chatting a bit more with Dr. Skinner, just chatting (love her), I went to the occupation therapist. She is also a lovely lady with curly hair and bright, clear eyes. She was very pleased with my progress, and amazed that I could raise my arms all the way over my head! She tested the strength in my hands and in my pectoralis muscle, and found that really, my strength is pretty much back. It is sore to use those muscles, which is appropriate given what they've been through, but she gave me some exercises to do to help that. I told her the pain is mostly in my skin, which looks fine - there is nothing wrong with it - but feels like it is really irritated, like a sunburn. I described it as "nervey," because I assumed this was because the nerve endings are all wacky, and she said that's exactly right. But I went ahead and changed that in my head to "nervous" - I have a nervous armpit. Doesn't that make you smile? And just like when I am nervous, a little massage should help it calm down over time. Good deal! The occupational therapist also offered some suggestions for sleep positions next time around, and suggested some ways that driving could be made less uncomfortable for me. The next mastectomy should be easier to recover from, despite it being my dominant side, because they won't have to take any lymph nodes. Overall, it was a very encouraging visit, and she said I didn't have to see her again unless any concerns arise, because I am already ahead of schedule in my healing.

Not a bad report, all in all, but I'll tell ya, all that information and processing really took it out of me. I've been pretty stationary all afternoon, lacking any energy to do anything! I will sleep well tonight.