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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

Monday was Rosh Hashanah, the Jewish new year (5777 on the Jewish calendar). I went with my family to services at our synagogue, where we helped greet and hand out prayerbooks to people, sang, prayed and listened to moving poems, personal stories and the amazingly loud “wake-up” blasts of the shofar. I even chanted two verses of Torah in front of the whole congregation (this is more impressive than it sounds, considering I don’t read Hebrew and had to memorize the whole thing, including the intricate up-and-down traditional melodies). After services, we went out to lunch at our favorite bagel store.

I mention this because this is exactly what we were doing last year on Rosh Hashanah when I got the voicemail from the Marin Breast Health Center telling me that the test results from my mammogram re-do were back and they wanted me to call them (it’s never good news when they ask you to call back to hear test results instead of telling you right then and there). If you’ve been reading this blog over the last year, you know the rest of that story (and if you haven’t, well, spoiler alert: it wasn’t good news). In this time of anniversaries (one year since my breast cancer diagnosis, my triumphant return to Burning Man after the Year of Living Cancerously) and of High Holidays-inspired introspection and t’shuvah (re-turning, redemption) I’ve been thinking a lot about how to put this past year in perspective and what I want from the year ahead. This post is an attempt to record and reflect on some of this t’shuvah work.

So now it’s not only a new year, it’s also time for a new stage of my life: post-cancer. It’s the time when I get to switch from being a patient patient to being a survivor. (Not that you ever really are “cured” and of course I’m still in the recurrence danger zone for the next five years, which is why all the chemo and hormone therapy, but the active phase of treatment and recovery is now over.) On the one hand, I am enjoying being able to celebrate surviving all that I had to endure and I am excited to finally be able to put a confident, weighty period at the end of the sentence “I had cancer and went through treatments and now I’m better.” Yet the other hand is busy holding the question: “so what do I do now”? That’s a big and heavy question, and the answer isn’t necessarily obvious.


All The Updates, All At Once

Posted by: julia

Tagged in: wrestle , solipsistic , reflect , record , memory , life , lessons , inspirational , identity work , cancer , Burning Man

Well well, it’s been a while, eh? Rest assured that the delay was not due to lack of things to report on, but as usual that there were too many distractions. Josh and I went on a trip to Ashland (yay Shakespeare!), the kids went back to school, and mostly what kept me away from the computer was the usual time-and-energy suck of getting ready for and then being at (and now recovering from) Burning Man. Anyway it is clearly time for some updates. Maybe not ALL the updates, as the title of this post seems to promise, but at least a bunch at once.

Patient Patient Update

So how has it been going for the patient patient, you might be wondering? Well, I’m happy to report that for the last few weeks I have no longer felt like a patient, (which is probably why I stopped updating so often). In fact, I am feeling pretty strong and healthy, all things considered, and almost entirely back to a normal-to-me level of activity. Actually, as of around mid-August (when I was approximately 6 weeks away from the reconstruction surgery), I was feeling like I was mostly recovered, at least as far as standing up straight and using/moving my body. (I was still dealing with somewhat lower energy levels, which mostly made me want to nap more often.) I went to a follow up visit with Dr. Sbitany on August 19th where he basically told me that I looked great (from his “proud of my handiwork” point of view) and I could do whatever I wanted now with no more restrictions. He encouraged me to massage the scars and scar tissue and we talked about the final “clean-up” surgery (in which my areolas get made circular again and various lumps and bumps are addressed). That final surgery sounds like it will be relatively minor and not require a hospital stay or drains or a long recovery time or anything. (Whew!)  I have yet to schedule that surgery but am hoping it can be some time in early November (since I’ve already hit my deductible for this year).


Patient Patient Update, 19 Days Later

Posted by: julia

Tagged in: record , life , cancer

Patient patient update time again. I went back to UCSF today to see the plastic surgeon for a follow up. I finally got the last three drains out, which is a HUGE relief. The doc seemed very happy with how things turned out overall, and said that I should let things settle for another month and come back and see him again. He wasn't worried about any of the swelling or bruising or bumps and lumps and reassured me that everything looked great and we'd fix any and all issues with one last follow-up surgery in the fall sometime (which will not require any drains or even an overnight stay in the hospital). He also cleared me for lifting a little more, gentle stretching and raising my arms above my head (as long as it doesn't hurt me to do it), and said I could drive whenever it felt comfortable to twist and turn. I even specifically asked about handpan playing (which caused him to look up what a handpan was on his phone, and he seemed impressed) and he said it would be fine. The only thing he specifically told me to avoid for at least another month is "lifting heavy things", which in this case I think means anything heavier than a handpan. ;)

I think the key is to ease back in to things slowly and pay attention to how my body feels as I do things. If it hurts, don't do it. For example, I still can't quite stand up straight, but I can try to do so more actively now without fear of tearing or damaging anything internal as long as I stop when it gets too uncomfortable. I'm really hoping that by some time next week I'll be able to walk for some decent distance without my back muscles killing me from supporting my hunched over posture. And maybe even be able to sleep on just a couple pillows instead of the big foam wedge I've been using. That would be awesome.

So okay, a bunch more patience and one more time under the knife and hopefully this reconstructive journey will be both finished and satisfactory. Slow and steady wins the race.


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