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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 ...
  • 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 ...
  • Radical Rituals at B ...
    Sunday is always a
    tough day at the
    burn because we have
    to strike
    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 ...
  • 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 ...
  • 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 ...


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

Being A Patient Patient

Posted by: julia

Tagged in: solipsistic , record , life , cancer

[This was posted to Facebook while I was awaiting my official release after four days being in the hospital after my DIEP flap breast reconstruction surgery. I'm posting it here too for posterity.]

I am being a very patient patient but I am so so ready to go home. Hopefully that will happen later today once the docs do their rounds. (Yay Independence Day!) I've done a lot of resting and healing in the hospital, and every day is better than the one before. I won't lie, it's been boring as heck but at least it hasn't been too painful (yay pain meds). There certainly is a ways to go before I can even stand up straight or move around without shuffling, but the trajectory is heading in the right direction, and I'm very happy about that. I know I'm in for a good solid month of Julaxin' and truly keeping it slow and steady...and you all can feel free to keep reminding me of that!

Reconstruction: Coming Up

Posted by: julia

Tagged in: record , life , cancer

Met with a new UCSF plastic surgeon yesterday, Dr. Hani Sbitany (which is a pretty awesome name in my opinion). He is the DIEP flap reconstruction specialist there. He was very nice and he and his colleague Dr. Z (also very nice, but unfortunately I'm forgetting her full name) answered lots of questions for me and were overall very reassuring. Looks like I do have enough belly tissue to donate in order to get me to a D cup when this is all over (which will look similar to what I had after the initial reduction I did back in November). 

They confirmed some things I did know (e.g. it will take about 6-8 weeks to recover, with the first 3-4 weeks the hardest and most restrictive due to the abdominal stuff, and there will likely be one more relatively minor surgery after this one to address any remaining adjustments) and told me some things I didn't know (e.g. it's a 12 hour surgery, the donor tissue will be placed on top of my pec muscles not under them like the expanders, there will be several new scars, and they'll be moving my belly button several inches down). Dr. Sbitany  didn't see any reason to wait any longer so we went ahead and scheduled the reconstruction surgery for June 30th. That's the timing I was hoping for (I want to be healed up in time for Burning Man at the end of August) so I'm happy about that. 

Now I just have to screw that battered courage of mine to the sticking place once again and remind myself that I'm a good healer and that the end results will be worth it. I know I can do this. Still grumpily and futilely wishing I didn't have to, though.

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.

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