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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 ...
  • 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 ...
  • Radical Rituals at B ...
    Sunday is always a
    tough day at the
    burn because we have
    to strike
    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 ...
  • 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 ...
  • 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 ...


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

Existential Angst and Identity Work

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

Even though I’m feeling physically better and better now that I’m a month+ out from surgery and my stitches have been removed, and despite the “good” news from various pathology reports and tests, I have to admit I’ve been feeling worse emotionally over this last couple weeks (and no, this doesn’t have anything to do with holiday “bah humbuggery”). Every time I stop moving and ask myself “how am I feeling right now?”, the answer is usually some combo of sad and scared, seasoned with what I’m grandly referring to as “existential angst”.

Why so blue? I think that is in large part due to a situational clarification (and an accompanying identity shift) that has finally started to come into focus for me: I really don’t “just” have breast cancer. What I have is a secondary “solid tumor” cancer which is a result of the radiation treatments from my go-round with Hodgkin’s Disease nearly 24 years ago. The treatment protocols are similar, but the overall long-term prognosis and mortality expectations are not necessarily the same for me as they would be for a person for whom breast cancer is their first cancer. How do I know that? Well, I’ve started doing internet research (yes, that means falling down that potentially terrifying rabbit hole that everyone warns you about, but I’m ready for a little more information now). I’ve Googled things like “Hodgkin’s Lymphoma long-term survival rates” and “breast cancer after Hodgkin’s treatments”. I’ve read through a bunch of articles from the NIH PubMed archives and hopped from one alarming reference to another, while discovering that the medical establishment now knows a fair amount about the long-term effects and risks of extended radiation treatments. I never really did any of this research after my Hodgkin’s treatments were over (admittedly, the internet was not as easy to shake information out of back then in the early 1990s, but I was also pretty committed to denial and ignorance as an emotional survival strategy until recently). So many years went by, and I was so generally healthy, that I lost both the sense that I was living on borrowed time and the urge to be eternally vigilant. My oncologist would occasionally mention certain kinds of ongoing risks during my yearly checkups, but mostly I heard these as justifications for why we needed to start/stop certain kinds of tests and screenings rather than as ominous reminders that I was heading into the most likely time period for a secondary cancer to show up (which, for the record, is 20+ years after the initial treatment—and I just celebrated 23 years of remission this past January). Even last year when I was called back into the Breast Health Center after my yearly (clear) mammogram to talk about how high risk I was, the previous Hodgkin’s treatment wasn’t really emphasized as a red-alert was just one of many factors we talked about in general before they pushed me to get tested for the hereditary BRCA genes. (Also for the record: I’ve now been tested twice for hereditary cancer risks, and both times my tests came back clear. So heredity is not a factor for me.)

All this is a long way of emphasizing that I’m just now finally realizing that there’s a bigger picture developing here, a story arc if you will—one that started but did not end with my first cancer treatments, but rather stretches over several decades and incidences (and certainly has the potential to continue stretching over additional decades and incidences). This bigger-picture/longer story arc realization is triggering a lot of identity work—not just the already familiar shift from “healthy person” to “person with cancer” to (hopefully) “cancer survivor”, but something more complex and ominous in which Our Heroine finally realizes that she is more of a special snowflake than she thought she was, and possibly in greater danger. There really aren’t that many people diagnosed every year with Hodgkin’s Lymphoma (the number for 2015 was something like 9000 new cases), and we haven’t been able to successfully treat it for very long (my Grandma died of it back in the early 1970s, right after I was born). But there is now this generation of young women, of which I am one, who were treated successfully for Hodgkin’s Lymphoma in their teens and 20s, who are now living long enough that we are getting some data about long-term survival rates and additional complications down the road as a result of earlier treatments. Additional complications like secondary cancers. Of which the most common one (in women) is breast cancer. So apparently, breast cancer after Hodgkin’s Lymphoma is totally a thing, and now it’s my thing. Whether I expected it or not, whether I wanted it or not, and no matter how I might wish it otherwise, I’m now in the process of resigning myself to this (and the increased vigilance that comes along with it) being a permanent part of my identity.

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.)

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.

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