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Latest Blog Entries

  • 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 >> identity work

Waiting Sucks

Posted by: julia

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

This waiting bullshit sucks. I’m living 24/7 (yes, even in my dreams) in a weird, cognitively dissonant, limbo space of non-specific threat, and it is exhausting and I hate it. I realize I just have to accept that this is a time to “be” and not to “do”, but the “being” is uncomfortable (not that surgery is going to be any more comfortable).

Speaking of which, I still don’t have a first surgery date nailed down. I spoke yesterday with Grissel, the new practice coordinator for Dr. Ewing the breast surgeon, and she said she’s still waiting to get an official order for surgery in the system from the doctor. I have no idea why it is taking so long to get that order in (*grumble grumble bureaucracy grumble*). Meanwhile time is ticking away and I’m getting more and more anxious. I pushed Grissel to give me some possible dates, and she said how about 11/9, and I said “really, can’t it be any earlier?” and she said she’d try to find out about the possibility of 11/4, but that she’d have to email Dr. Ewing and Miriam (Dr. Foster’s assistant, who has to coordinate with her) and get back to me. I had to just say okay, let me know as soon as you know, even though I just wanted to scream and yell at her "don't you know how this FEELS?"

I so want to get this treatment journey started and this first surgery over with. I’ve spent almost 6 weeks living with this cancer diagnosis and 3 weeks constantly contemplating the difficult physical and emotional challenge of losing vital, identity-central pieces of my body. I’m a fighter and I’m ready to get in there and overcome this challenge with optimistic Supernova style and grace and with my super sharpened weapons of mental/emotional/physical preparation, but this fatiguing waiting is going to make me drop my weapons if it doesn’t end soon. Yet I’m afraid to put all my carefully prepped weaponry down and rest, because I could be called to the fight at any moment. Can’t fight, can’t rest, can’t do anything but distract myself and hope things start moving again soon...this sucks. I feel stalled out and stuck and unable to grow or heal from this trauma. I hate how everything else in my life has to be put on hold while this uncertainty resolves itself.


Cancer Clarifications

Posted by: julia

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

I am so humbled and uplifted by the many heartfelt responses to my cancer news from the mix of beautiful people that make up all my many communities. You people seriously give me faith in humanity.

I realized though from some of those lovely responses that perhaps I was being too vague in my original post yesterday, so in my usual spirit of full disclosure (and at the risk of oversharing) please let me clarify a couple of things:

1) What I'm dealing with here is "garden variety" breast cancer (specifically, invasive ductal carcinoma, and even more specifically the hormone positive kind, which is good). Theoretically this is not related or only distantly related to my bout with Hodgkins Disease back in 1992. It was found through a routine mammogram a couple weeks ago, which triggered a follow up mammogram right before I left for Burning Man and then that in turn triggered a biopsy appointment a few days after I returned (boy I'm glad I waited on that!) The biopsy results just came back yesterday.


Bad News

Posted by: julia

Tagged in: solipsistic , record , life , identity work , cancer

Well apparently my usual audacious optimism only goes so far...got bad news on that biopsy today. They found cancer. Next steps are an MRI and a consult with a surgeon. Here we go again....:(

And oh yeah, Happy Fucking New Year.


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