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  • Radical Rituals at B ...
    This year I’m
    doing something
    different than my
    usual tradition of
    pithy punch list of
    lessons learned to
    wrap this series of
    entries up.
    I’m writing
    this last entry
    exactly two weeks
    after we got home
    from the burn, b ...
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  • Radical Rituals at B ...
    Monday morning I
    woke up early and
    decided that I
    wanted to do one
    more personal ritual
    before we had to
    break down and pack
    up our yurt and load
    the truck and leave.
    So I took my handpan
    and one of our
    little chairs and
    walked ou ...
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  • Radical Rituals at B ...
    Sunday is always a
    tough day at the
    burn because we have
    to strike
    camp—it’s
    tough physically of
    course but
    it’s also
    tough emotionally
    because it feels
    like the setting and
    the vibe we worked
    so hard to put toge ...
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  • Radical Rituals at B ...
    Saturday was my only
    day with nothing
    pre-planned and
    nothing I had
    committed to do. The
    burn was almost over
    and I was starting
    to feel nibbles of
    FOMO (Fear Of
    Missing Out) so I
    was determined to go
    see some more art
    (especially ...
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  • Radical Rituals at B ...
    Because I had
    actually gotten
    enough sleep, I woke
    up reasonably early
    on Friday morning.
    Josh was still
    asleep, but I wanted
    to take advantage of
    the relative
    coolness of the
    morning and go do
    something. So I
    decided to take my h ...
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Parentheticals

A blog in which Our Heroine records, reflects and wrestles with meaning. With lots of asides.
Tags >> record

Post-Op Report

Posted by: julia

Tagged in: wrestle , solipsistic , reflect , record , memory , life , cancer

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.


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.


Disruptions

Posted by: julia

The farther I get into this cancer saga the more I find myself dealing with discomforts around the variety of ways in which the treatments and results disrupt my familiar, chosen routines. I’m not just talking about physical discomforts here—though there are plenty of those—I’m talking about mental and emotional discomforts. That sensation of cognitive dissonance, of having to simultaneously hold two different and competing realities, is really fierce sometimes. Right now is one of those times. On the one hand, I want to keep doing all the things I normally do, and participate in all the events that define my year’s rhythm. On the other hand, I have to acknowledge and respect the cumulative fatigue and fog from the chemo treatments that’s following me around all the time now. I am torn between defiantly shaking my fist/blowing raspberries at cancer (“you can’t take the sky away from me, you bastard!”) and wanting to wrap myself up in a soft cocoon of gentle self-love (“I will not get caught up in expectations of doing, my job is just to rest and heal.”)

Where this conflict seems most acute at the moment is around my writing and my writer identity. First of all, the writing routine I used to have is long gone, shattered by a schedule that is now pockmarked by and increasingly filled up with various kinds of self-care, including a lot of extra sleeping. And even when I do have the time or interest to sit at the computer, I’m finding it really difficult to open up my novel manuscript and have anything to say, even though I have an outline and supposedly know where the story is going. It’s hard to concentrate or imagine new things. Now, rest assured gentle reader, words are still being made. I journal every few days, and sometimes try to put together a blog post like this one (though it’s been a month since I last posted, sigh). But they’re slow and not getting me any further down the fiction-writing road to which I’ve committed both my time and a significant piece of my identity. And if writers are only writers if they write—and I’m not writing—then does that mean I’m not a writer anymore? Did cancer take that identity away from me too? Dammit! <shakes fist defiantly>

But even more acutely, with my third chemo treatment scheduled for tomorrow, I have reluctantly had to cancel going to one of my favorite writer events this weekend (FOGcon, my local speculative fiction convention. I’ve attended every year for the past 5 years since it started.) At first I thought maybe I could at least go for a day, or go for the weekend but retreat to my hotel room whenever I needed a nap, but the reality started to sink in that I was really unlikely to feel good physically or mentally (and since most of what I’d be there for would be for mental stimulation, that would make going frustrating at best and pointless at worst). So I cancelled my hotel room, and will eat the cost of the convention membership, and mope instead of write. There is another writer convention in May over Memorial Day weekend (Wiscon), and I’ll hold out hope that maybe my treatment/surgery schedule will at least allow me to go to that. Though who knows? Part of the fist-shaking irritation here is that I just can’t plan for anything, or if I do that I have to hold everything lightly and without complete commitment, because cancer just shoved and shouldered its way to the front of the priority line and everything behind it will just have to wait its damn turn. And I have Things To Do, people, things I want and love to do, things that reinforce my chosen positive identities and bring me satisfaction that I am living the life I want to live. I had settled into a pretty great regular routine of enjoyable events and activities throughout the year that gave shape to my life and that I looked forward to (not just writing stuff but many other things too). I hate that this year all the enjoyable Things must be (or at least potentially be) put aside or shoved to the margins while I deal with My Year Of Cancer Redux. Will I be able to run my Fly Your Freak Flag High booth at Maker Faire or go to Wiscon in May? Go to my nephew’s high school graduation in June? Take a vacation with my family this summer? Finish my goddamn novel? Who the hell knows. First I have to focus on recovering from all the chemo and surgeries and all the side effects that come with them, whether I like it or not. I don’t like this new life, this new normal, however temporary it may be. I want my old life and my familiar rhythms back. Some disruption can be fun, or creatively re-charging; but this is not that kind of disruption, and I don’t want it. I’d shake my fist again here but I’m too tired.


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