It’s been a while since I had a cancer update post so I thought I’d throw one out there for those who are following along with my cancer saga (I prefer thinking of this whole experience as a saga, because that way it sounds more like something to be enjoyed as a singalong around a roaring fire while drinking mead, and that sounds WAY better than mere reporting).

This last week or so has been all about staying positive and doing things I *can* control while waiting for the surgery date to finally arrive. I helped Josh figure out all the logistics we will need help with next week and put tasks on the Lotsa Helping Hands calendar for people to volunteer for. I filed receipts and paid bills and made “to do” lists for later when I feel better. I bought a sports bra (this is a weird concept to someone who has never owned one), sheepskin seatbelt pads, new super comfy lounge pajamas, and new sheets and comforter for our bed. I’m making piles of books to read. I have yet to go get a flu shot, but that’s on my agenda. I also still need to put together my OR and recovery play list (guided meditations, handpan music, reassuring affirmations) and pack my hospital go bag (with everything I want for comfort and reassurance in the hospital). In general I am trying to do things that make me happy so I can bank them up for remembering fondly during the dark days.

Last Thursday I went in to UCSF for a pre-op appointment with Sarah Goldin, the surgery nurse. She was very nice (like all the other UCSF staff so far) and gave us lots of info and answered lots of questions very patiently for us. I got given another big binder with pre-organized sections full of info and resources (very similar to the green expanding folder they gave me at the Marin Breast Health Center), which made me realize that I think UCSF does their “orientation” later in the treatment process than the Marin folks do, and that if they’d done some of this stuff earlier it wouldn’t have felt so bad having to wait around with no info and no patient navigator type person to talk to. (I actually asked Sarah about patient navigators at UCSF and she told me they’d just hired one and were orienting her that very day, and promised to have the navigator call me. Huh. That’s right, I am a powerful manifester.)

I learned a lot of specifics from Sarah that were helpful and reduced anxiety, but I also learned a lot of specifics that were new indignities to process or new potential complications to worry about. Here’s a few specifics in no particular order, which I’m writing down both to process for myself and to inform for those who are interested.

The surgery itself will begin at 10:45 on Monday morning, 11/16, and should last about 4-5 hours. Before that, though, I must report to UCSF at 7:30am (I’m hoping this is before rush hour gets too bad) so that they can do a wire localization procedure, which basically means they do one more mammogram to look for the little clip that was left inside my breast during the original biopsy, then insert a hair-thin, flexible wire into my breast and hopefully right next to/into the tumor itself, then tape this down and leave it there as a marker for what to take out during the lumpectomy portion of the surgery. The tumor and surrounding “margin” of flesh will be taken out and biopsied again as well. Sarah told me that the remaining bits of tumor will be preserved at UCSF’s tumor bank for at least three years, both for general research purposes and in case it ever becomes relevant to my particular cancer treatment in the future. (E.g. if they come up with some new experimental chemo drug and want to try it on a tumor like mine, either for my benefit or someone else’s.) I had another trippy moment of imagining what that tissue bank is like: what it looks like, how people move through and in and out of that space, and what the process is of getting tissue samples there, moving them around, destroying them when they’re no longer relevant, etc. I am both amazed and a little squicked that a thing like a “tissue bank” even exists.

Anyway. More details. Also before surgery officially starts, they will give me a shot of lidocaine to the breast and then a shot of blue contrast dye into the ducts which will work its way to the “sentinel” lymph nodes closest to the tumor and turn them blue. Dr. Ewing will be removing anywhere from one to six (that’s a higher number than I originally anticipated) blue lymph nodes and sending them off for biopsy. I won’t get the results of the pathology report telling me about both the tumor and the lymph nodes until about 10 days after my surgery, when I go in for my post-op appointment on 11/25. I certainly will be anxious to get that info, since it’s really the last big chunk of diagnostic data that will determine whether or not (or how aggressively) I undergo chemo treatments. But once again, I’m going to have to practice patience and wait a while before I know.

We also talked about the biggest potential side effect that can develop after any sort of messing with lymph nodes: lymphedema, a condition that occurs sometimes when your lymph system isn’t working properly to drain away fluids from the extremities (in this case, my right arm would be at risk for swelling and puffiness, sometimes temporary but sometimes permanent). Because of my earlier history of lymphoma, I asked if I were at higher risk for lymphedema (yes) and whether there was anything I could do to lower the risk of it happening or at least mitigate the symptoms (lower, no; mitigate, probably. Massage is good, and there’s a 5-week class Sarah wanted to refer me to about managing lymphedema).

Along the same lines, we also talked about post-op instructions a bit (there will be more lecturing coming I’m sure). I can go home the next day as long as my pain is controlled and I have been able to eat and drink without issues. I will very likely be sent home with drains still in, which they will show me how to measure and empty for as long as needed. I will need heavy duty pain meds (percoset and the like) until I don’t, but likely for at least a few days to a week. I will not be able to drive while on those meds (or while the drains are still in). I need to be aware of infection symptoms (apparently fever can sometimes be masked by the pain meds so I need to be aware of more than just temperature). I should not raise my arms above my head for a while. I should not lift anything more than 5-10 lbs (hello, handpan that weighs 15 pounds) for a while. I should not smoke for a month. I will not be able to bathe or immerse myself in water until the wounds have fully healed (probably several weeks to a month). I should resume walking as soon as possible but take it easy on all other kinds of exercise until given the green light. I should have a diet high in protein (for wound healing) and fiber (because pain meds constipate), and drink lots of water. There’s a lot to think about. And this is just the first of three surgeries.

Yesterday I had a conversation over the phone with the anesthesiology assistant. Mostly she just asked me standard questions about my medical and surgical history, and told me a few more details about how to prep for surgery. (For example, I learned something new today: that the morning before surgery I should be washing myself with antibacterial soap in the shower. Good to know.) I warned her that I have in the past had asthma issues, though I don’t currently. She reiterated the general schedule and what not to do before and after.

But how am I feeling about all this? Good question. Overall okay, I guess. I won’t lie, I’m still often anxious about the future and feeling a little bit like I have a giant black raincloud hanging over my head and following me around, but I’m managing to keep my equilibrium pretty well. I’ve had enough time to process the general fear of surgery that I had left over from the Hodgkin’s experience and have come to realize that really what I’m wrestling with is this sense of impending transition, and the anxiety of being forced to cross the divide between “normal” and “new normal”. Since I was pretty satisfied with my current state of “normal” and I don’t know what “new normal” will be, it’s hard to keep optimistic about it. I am still keenly aware every single day of the fleeting days remaining for my big soft warm squishy tender boobies, and still practicing saying “so long and thanks for all the good times” to them. I am also quite aware these days of how wonderful a thing it is to be safely enclosed in this strong protective envelope of skin and dreading what may come once that envelope is cut open and rearranged. On the other hand, I’m also more aware now of the general discomforts of big floppy boobs and beginning to look forward to what it will feel like for my neck and shoulders to not be dragging this extra 20 pounds around on my chest. I’m thinking about how my t-shirts will fit differently and how I’ll finally have more options in the bra department.

So I’m hanging in there. What else can I do? I’m taking care of myself and others, I’m living my life as “normal” as I can until I can’t, and then when it’s time I’ll adjust.  That’s what it is to live, right?