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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 >> lessons

Courage Must (And Will) Be Applied

Posted by: julia

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

After a long day at UCSF on Friday that culminated in a meeting with the lovely Dr. Ewing the breast surgeon (no really, she truly is lovely, as is her staff, and for that I am extremely grateful), nothing has changed but things are clarifying more. She agreed with the assessment of Dr. Fowble (the radiation oncologist) that my previous radiation treatments had likely contributed to the occurrence of this breast cancer, and that the possibility of the same thing happening to the other breast was therefore significant. So double mastectomy it is. She also gave me information about the different choices I would have for reconstruction, which basically came down to nipples (which would mean a longer overall process and involve an additional surgery for a total of three surgeries before I'm done) or no nipples (shorter process, two surgeries total).

These decisions are really hard. Part of me just wants to say "take off the breasts and let's be done with it, I'll learn to live with and love a flat chest", and not even mess around with reconstruction. But the other part of me that has been a big-busted, hourglass figure girl all her life feels like it just wouldn't be satisfying to live my life without something up top to balance the bottom. So much as I HATE the idea of additional surgeries and dragging this process out longer, I think I am going to go with the nipple-saving process, because I'm pretty sure that future me will appreciate the end result more.

I am supposed to meet with a plastic surgeon sometime next week, and that will hopefully result in some additional info for me about the details of how the reconstruction process will go and exactly when the surgeries will happen, but for now my understanding is that it'll go something like this. First, hopefully around the beginning of November, I will have a surgery to remove the cancer and at the same time reduce the size of both breasts. That will take about two weeks to recover from but then I will have to wait and let the reduction heal up for six months, and then after that I will have another surgery which will be the full double mastectomy and the insertion of temporary "stretcher" implants. I will recover from that and keep stretching my skin for a couple more months and then have a third surgery to insert the permanent implants.


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.


Science, I love you. Don't ever leave me.

Posted by: julia

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

I went to UCSF today to meet with a genetic counselor and give them some blood so they could run a comprehensive genetic test (apparently way more comprehensive than the cheek swab genetic test I had around this time last year, which came back as negative for the BRCA-1 and BRCA-2 genes). The counselor was terrific and I learned a lot (not that I'll remember most of it, but that's ok). The Cancer Center at UCSF also turned out to be pretty impressive and even though I hate the idea that I have to go there at all, the place and the people all felt competent, supportive and reassuring (and very, very professional, in a good way).

The thing about being treated at a major top-notch medical research institution is that they do not f**k around when it comes to applying science to a problem...they not only know what they're doing, they're the ones actually leading the charge in our understanding of how cancer works. So despite being a tiny bit freaked out about hearing all the scary things that they could possibly find in my DNA (for example there was one point where the counselor told me in all seriousness that even though she's not usually prescriptive, if they find one particular gene, she would recommend I get immediately get my ovaries surgically removed), I'm also feeling really good about the fact that I will have a super complete chunk of info once this analysis is done. I think this genetic info could be a big help in the decision-making about treatments that are looming on the horizon. Unfortunately the results will take about a month to get to us, and that means more waiting, but it feels worth it, at least for now.

Science, I love you. Don't ever leave me.


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