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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.

Good News and Bad News

Posted by: julia

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

Slowly but surely some info is starting to emerge. I have good news and bad news (don't you hate it when people say that?) and there's still more to figure out, but here's the update as of today.

Good news: I got the results back from yesterday's MRI, and from what it could see, there is only one tiny (6mm) tumor in the right breast, nothing in the left breast, and no obvious enlargement of the lymph nodes (which if present might indicate that the cancer had spread beyond the one spot). That's all very reassuring and makes us hopeful that this was caught early enough to be "only" stage 1 (though final staging is not complete until after surgery).

Bad news: I went to UCSF today for a consult with a radiation oncologist recommended by my surgeon. She told me flat out that given my previous 9 weeks of radiation treatments for the Hodgkin's Disease 23 years ago, she would recommend against any further radiation treatments of any kind for me. That means a lumpectomy is right out, since in order to make that successful, the lumpectomy option always includes radiation afterwards. I had a feeling that was going to be her recommendation so I was braced for that, but I wasn't really expecting what followed (though in hindsight duh, I totally should have). She then also said that she felt that the previous radiation treatments had contributed to this occurrence of breast cancer, and since both breasts were part of the previous radiation field, there was approximately a 20% higher risk that the cancer could occur separately again on the left side at some point in the future. That's a risk that would be added to all the other risks I already have (the same risks which clearly tipped me over into the "bad gamble" range this time). So while she didn't make an explicit recommendation (that's for the surgeon to finalize), it does now sound like if my top priority is to not have another occurrence of cancer (which it totally is), it would be a smart idea to opt for a double mastectomy.


"How Are You Doing?"

Posted by: julia

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

People keep asking me "how are you doing?" It's a complicated answer so I usually don't go into it. The short version is "ehh. I'm hangin' in there." (Which I am, yes I am, with all my considerable, well-practiced strength.) The long answer is something that is hard to put into words. But words are my friends, so let me try.

With no other "doing" to distract me, I've been flailing around in all the feels for the last few days, especially the negative ones. Anxiety, fear, sadness, disappointment, guilt, dread, irritability, uncertainty, loneliness, melancholy, self-pity, anger, frustration, grief: I boing around from feeling to feeling like a renegade superball escaping a gumball machine. One minute everything is fine, it's business as usual and I'm compartmentalizing and balancing like the pro tightrope walker I usually am; the next minute everything is the opposite of fine, and I'm overwhelmed and over-sensitized to every kind of setback, and pissed off and disappointed that everyone can't see that.

It's taking a lot of energy just to keep any kind of forward momentum going. I'm napping a lot. I'm also talking a lot to people who are good at listening, being gentle and non-judgmental with myself at every opportunity, and practicing gratitude and optimism whenever I can. Next week will be a week full of doctor appointments and tests, which will hopefully result in at least the beginning of a plan of action, but until then, there's this. Just being with all the feels, all the time. Open, open, open.


Help Me Find the Courage to Make My Life a Blessing

Posted by: julia

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

It's Yom Kippur today and I've spent most of the day in services, singing and praying, and thinking deep thoughts about how strange and wonderful and awful life can be. One line keeps getting to me and making me tear up (from Misheberach, the prayer for healing): "help me find the courage to make my life a blessing". I don't think I've ever listened to that line as deeply or appreciated it as fully as I did today. Life takes a lot of courage just to keep living it at all as it rockets by and buffets us with change and surprise and joy and sorrow; but to live it well, and in such a way that you can make yourself a blessing to others and to the world, hoo yeah now *that* takes some big, big courage. And practice. Lots of practice.

Here's hoping I have lots more opportunities to practice.


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