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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 ...
    Readmore...
  • 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 ...
    Readmore...
  • 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 ...
    Readmore...
  • 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 ...
    Readmore...
  • 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 ...
    Readmore...

Parentheticals

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

Mixed Feelings The Night Before Surgery

Posted by: julia

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

Ok this is it, the night before surgery, the last night of “normal” before everything starts to change. On the one hand, I’m as prepared and loved up as I think I possibly can be, and I know that I’m in the best of hands and that everything will go fine. I’m brave and I’m healthy and I’m going to keep it rock steady. On the other hand, I’m nervous and scared and feeling a bit overwhelmed from all the attention. I feel like there’s more rowducking I could have/should have done, but it’s too late now. I have to just let go and be here now.

It’s been an emotionally weird weekend, to be honest. I tried to keep myself busy (Dickens rehearsal all day yesterday and a show at Marin Theater Company last night, then a Rodef Board meeting most of the day today) but I also had a hard time being totally present. People are sad and concerned around me. They want to mark or at least acknowledge the upcoming transition somehow. They want to give me blessings, words of support, advice, food, and hugs. I said on Facebook yesterday that I’m having a mixed feelings about all the goodbye hugs I’ve been getting, and what I mean by that is that while I love the hugs and appreciate the tremendous amount of support I’m getting from people, it’s also weird to be thinking about the fact that my hugs are going to permanently change after tomorrow. First off I won’t even be able to hug for a while until things heal sufficiently, but even after that, hugs just won’t be the same with a) smaller and then b) artificial boobs. So just like every shower was a grieving before (because every time I would get in the shower I’d be very conscious of my soon-to-be-changed boobs and skin), every hug is a grieving too right now.

Friday was also a day of mixed feelings. In the morning I drove Isaac and 5 other kids from his class on a field trip to the Legion of Honor, and it was gorgeous weather in the city and I was feeling pretty good. But then later that afternoon I drove back in to the city to go do a pre-op mammogram at UCSF (they’d only told me I had to do this on Thursday afternoon, and it was kind of annoying having to rearrange my whole schedule to accommodate, but right now if my care team says jump I say how high). That was unexpectedly hard because while waiting around between scans for the technician to read the images and make sure they were okay, I looked over her shoulder to see the images and there in quite vivid black and white, I could see my tumor. I don’t think I’ve seen it before. It was a very obvious small white spot in a field of darkness, with the little metal clip left behind from the biopsy in a clear line right next to it. Seeing that made everything feel real and scary in a way that it hadn’t felt before that. It’s hard to explain. It’s like I suddenly had to come to terms with the fact that this whole new cancer experience was truly happening, and grieving the final loss of possibility that maybe, just maybe, this was all just a bad dream after all (since I feel normal and healthy and I never felt a lump and didn’t have any other sensation that anything was actually wrong, so I was just taking the doctors’ words for it that there was really cancer there).


Cancer Saga Update

Posted by: julia

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

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.)


Fun With Genetic Testing

Posted by: julia

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

My mom and I went to UCSF yesterday to meet with Liane Abrams, the genetic counselor, and get the results of the blood test I did last month. Much to my relief, 48 of the 49 different genes they tested came back as negative for any mutation (that’s including the BRCA-1 and BRCA-2 genes I was tested for last year), and the one that didn’t come back negative came back as a “variant of unknown significance” (which is a great phrase and totally my next band name). That variant one is PMS2, in case any geneticists want to know, and is apparently something that shows up in 1% of the Ashkenazic Jewish population. Liane didn’t seem to think the variation was any big deal at all in my case, and assured us that it certainly wouldn’t change my treatment plans in any way. So that was a big sigh of relief.

Weirdly enough, that meeting with Liane was kind of fun. She’s a nice Jewish lady with a New York accent and we felt very at home with her. She taught us some science (she’s clearly an experienced researcher and a great teacher) and we laughed a lot. She also took the time again to ask us about my treatment plan, and about how we each were feeling and how Josh and the boys were doing, and seemed genuinely and humanly concerned. She even asked me to email her to let her know my surgery date, I think she might be intending to come visit, which is very sweet.

On the way out we stopped by the main desk and got to meet Grissel (Dr. Ewing’s practice assistant and the one I’ve been going back and forth with about my surgery date), which was good. She was very nice in person and apologized profusely for the delays and the confusions in the scheduling process. I think having a human interaction face-to-face was helpful in making us each more sympathetic to the other, and we were able to confirm for sure that the surgery date will be 11/16, which removed the last bits of lingering uncertainty. She said she’d be letting us know about pre-op appointments as soon as possible, and would be sending us more info about what to expect and how to prepare as well (even though I have a lot of that already from Dr. Foster).


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