Posted by: julia
on May 08, 2016
Finally had my post-op follow-up appointment on Friday with Dr. Ewing and her surgical nurse Sarah. Much relief and a few surprises, and overall the prognosis is good. Sarah took off all the bandages (such a relief) and examined me and seemed very pleased with the results of everything, which made me feel good. My previously-radiated skin seemed to be doing great with all the assaults on it, just as great as or greater than other people’s “normal” skin would be. My incisions are healing fine under their layer of glue (which isn’t bothering me as much as last time, since I have mostly lost feeling in the area and the glue isn’t rubbing on anything tender). The expanders looked fine, and the drains looked fine (though I can’t get them out until next week when I meet with the Plastic Surgery nurse). Even my poor cored-out, bruised and currently collapsed nipples apparently looked good (one of the surprises was that under the bandages there had been special little supports called “nipple huts” for them, which explained why there had been extra dressings there—I hadn’t known.) Sarah told me that it could take up to a year before I would know for certain what areas of breast skin I would still have some feeling in and what would be forever numb. She cleared me for driving and showering (yay!), as long as I’m careful, and told me to continue not lifting things over 10 pounds (though a small amount of scooting my 15 lb handpan around is probably okay) and not raising my arms over 90-100 degrees, and to stay away from repetitive motions with my arms like putting away dishes. (I didn’t tell her about stenciling freak flags.)
After she left, I got to look at myself in the mirror finally and fully see what I had only been able to dimly feel through the bandages. Luckily I’d been warned beforehand to have “low cosmetic expectations”. The girls definitely looked ugly and strange...not only puffy and glue-streaked and lumpy, but also really high up my chest and sort of baggy and collapsed. That of course will change as the expansion commences (which Sarah confirmed will start next week—she told me to take an Ativan ahead of time too.) Still, looking at those new boobs was still an unsettling and saddening experience. I know it’s easier to have woken up from a mastectomy with at least something vaguely breast-like still in place, and I’m grateful to not have had to come to terms with my chest being totally flat and even the skin-shells missing, but on the other hand, yikes! I did not look like the me I was, or even the me I hope I will be. I am definitely modified-human-in-process.
Next one of Dr. Ewing’s new residents came in, whose name was Evan. He checked out the incisions too and we chatted for a bit about a variety of things (including the fact that it was totally fine to take Tylenol regularly and it wouldn’t hurt my liver). He then started talking about my pathology report (they do another round of examination on the breast tissue that gets removed during a mastectomy), which I’d assumed Dr. Ewing was going to do, so I was a bit taken by surprise when he told me that they’d found another tumor in the left breast (the original one was in the right breast), but that it was very small and that Dr. Ewing didn’t think it warranted checking the sentinel lymph nodes to see if it had gotten any farther. I was immediately hit with two feelings: relief (because my decision to do the double mastectomy certainly seemed to have been the correct one and I felt totally reinforced about that) and alarm (because whaaaaaat? My body had been making more cancer all this time, and we hadn’t noticed? And what about all that chemotherapy? Had the tumor been bigger and the chemo reduced it? Or had it not affected this tumor, in which case why the hell had I bothered?). Yet again, I feel like I never get through an appointment at UCSF without some major surprise.
Posted by: julia
on May 06, 2016
Okay, I’m back. And the good news is, I’m a week and a half past the mastectomy surgery (which went as well as these things can go) and healing up great. However, it’s taken me a good long time to get clear enough (physically and emotionally) to be able to put together a blog entry about what’s been going on since my surgery. First, of course, I was all sleepy and loopy from the pain meds and the anesthetic leaving my system, and it was hard to do anything, let alone write. Then, once that fog began to lift and my body started feeling a little bit better, my feels kicked in and I had quite a few days of (understandably justified) teary upset and depression. I certainly had anticipated some of the reasons why I might be upset and depressed (see last entry’s navel-gazing), but the actual, physical reality of losing the boobs and starting the cyborg process was now obvious to me in a way it hadn’t been (and couldn’t have been) before it was actually happening/had happened right there in my body. And yeah, I’d been right—amputating pieces of your body is definitely upsetting, no matter how ready you think you are for it, how justified you are in doing so, or how courageously you look ahead to future gain. Grief will not be denied and this was a grief-worthy event.
Honestly, the mental game has been (and no doubt will continue to be) the hardest part of both the mastectomy and the overall cancer saga. Physical healing is tough, don’t get me wrong, but I’ve been blessed with a strong constitution and enough leisure and disposable income to supplement that natural constitution with a whole variety of self-care activities. And yes, I’ve had the experience and lessons learned from my first cancer rodeo to guide me and help prepare me for playing the mental game of this new cancer experience. But when the body is compromised, and the broken-scared-anxious-despairing-worthless-pointless-hopeless-grieving feels crash in with a depressive tsunami, it is really, really hard to stay positive and courageous or even involved with normal life. Time seems to drag and it feels like nothing will ever get better and new normal is too far away to bring any comfort in the now. For a good long while after the surgery all I could do was keep going and try to find ways to distract myself from thinking too much so I could get through each day, and then eventually the days would pile up and I’d make it far enough to realize that things had changed and hopefully gotten better.
And that’s what happened. Eventually enough days did pile up, and my body healed up enough, and I let the feels tell me what they wanted to tell me and tried to listen respectfully without getting too caught up in the “always/never/forever” parts of them. Now I’m starting to be able to process what’s happened and talk and write about it and arrange my narrative(s) in a way that is beginning to make sense and have some true meaning to me. So I think I’m winning the mental game again. I’m still grieving, I’m still upset and uncomfortable, but it’s better enough now that I can also balance all that with the comfort and relief that increased involvement in the rest of my life brings. I am more confident now, given the evidence immediately available to hand of positive improvement over time, that I am not always going to be this broken and weak and distracted. I am still myself, and myself is still too curious and enthusiastic about life to be put down for long. (Myself is also impatient, which I recognize is a large part of the problem here but unfortunately seems to come baked in to my personality.)
Posted by: julia
on Apr 07, 2016
Yeah, I know it’s been a long while between posts, but here we are again. I have several things to report on the cancer treatment front, and some musings about ending one phase of the process while also looking ahead to the next.
First and most exciting to report is that I had my final chemo treatment last week. While it’s still going to be about another week or so until I’m fully recovered from the not-so-fun collection of chemo side effects (including spaciness and fatigue, both of which make it hard to blog), I must say that reaching the end of this chemo phase makes me super happy. To celebrate, I brought along some tiny bubble wands (with pink hearts on top!) and got my mom and Josh to blow them with me down in the Meditation Room (the overprotective nurses at the infusion center didn’t want me to blow them there—fine, be that way). Now I get to look forward to my hair and eyebrows growing back, which will hopefully start sometime in the next month or two. It’s not unreasonable to expect that by the end of summer I’ll have an actual hairstyle and can say goodbye to the crazy colored wig extravaganza. It’s been entertaining to be pink- and purple- and blue- and green-haired, but I’d way rather have my dark hair with sparkles back.
Now that the chemo phase is over, though, it’s time to turn my (and my team’s) attention back to the surgical phase of treatment. Therefore, the day after my last chemo treatment last week (while I was still feeling reasonably energetic from the steroids they gave me the day before), I went back to UCSF to meet with my breast surgeon, Dr. Ewing, and my plastic surgeon, Dr. Foster, and talk about next steps. When we had last left Our Heroine, these two docs had already successfully performed on me a lumpectomy and sentinel lymph node removal, along with a “nipple-saving” breast reduction, in preparation for the upcoming double mastectomy and reconstruction surgeries. We put those other surgeries on hold while I completed chemo, but now it was time to get that ball rolling again.