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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 >> cancer


Posted by: julia

The farther I get into this cancer saga the more I find myself dealing with discomforts around the variety of ways in which the treatments and results disrupt my familiar, chosen routines. I’m not just talking about physical discomforts here—though there are plenty of those—I’m talking about mental and emotional discomforts. That sensation of cognitive dissonance, of having to simultaneously hold two different and competing realities, is really fierce sometimes. Right now is one of those times. On the one hand, I want to keep doing all the things I normally do, and participate in all the events that define my year’s rhythm. On the other hand, I have to acknowledge and respect the cumulative fatigue and fog from the chemo treatments that’s following me around all the time now. I am torn between defiantly shaking my fist/blowing raspberries at cancer (“you can’t take the sky away from me, you bastard!”) and wanting to wrap myself up in a soft cocoon of gentle self-love (“I will not get caught up in expectations of doing, my job is just to rest and heal.”)

Where this conflict seems most acute at the moment is around my writing and my writer identity. First of all, the writing routine I used to have is long gone, shattered by a schedule that is now pockmarked by and increasingly filled up with various kinds of self-care, including a lot of extra sleeping. And even when I do have the time or interest to sit at the computer, I’m finding it really difficult to open up my novel manuscript and have anything to say, even though I have an outline and supposedly know where the story is going. It’s hard to concentrate or imagine new things. Now, rest assured gentle reader, words are still being made. I journal every few days, and sometimes try to put together a blog post like this one (though it’s been a month since I last posted, sigh). But they’re slow and not getting me any further down the fiction-writing road to which I’ve committed both my time and a significant piece of my identity. And if writers are only writers if they write—and I’m not writing—then does that mean I’m not a writer anymore? Did cancer take that identity away from me too? Dammit! <shakes fist defiantly>

But even more acutely, with my third chemo treatment scheduled for tomorrow, I have reluctantly had to cancel going to one of my favorite writer events this weekend (FOGcon, my local speculative fiction convention. I’ve attended every year for the past 5 years since it started.) At first I thought maybe I could at least go for a day, or go for the weekend but retreat to my hotel room whenever I needed a nap, but the reality started to sink in that I was really unlikely to feel good physically or mentally (and since most of what I’d be there for would be for mental stimulation, that would make going frustrating at best and pointless at worst). So I cancelled my hotel room, and will eat the cost of the convention membership, and mope instead of write. There is another writer convention in May over Memorial Day weekend (Wiscon), and I’ll hold out hope that maybe my treatment/surgery schedule will at least allow me to go to that. Though who knows? Part of the fist-shaking irritation here is that I just can’t plan for anything, or if I do that I have to hold everything lightly and without complete commitment, because cancer just shoved and shouldered its way to the front of the priority line and everything behind it will just have to wait its damn turn. And I have Things To Do, people, things I want and love to do, things that reinforce my chosen positive identities and bring me satisfaction that I am living the life I want to live. I had settled into a pretty great regular routine of enjoyable events and activities throughout the year that gave shape to my life and that I looked forward to (not just writing stuff but many other things too). I hate that this year all the enjoyable Things must be (or at least potentially be) put aside or shoved to the margins while I deal with My Year Of Cancer Redux. Will I be able to run my Fly Your Freak Flag High booth at Maker Faire or go to Wiscon in May? Go to my nephew’s high school graduation in June? Take a vacation with my family this summer? Finish my goddamn novel? Who the hell knows. First I have to focus on recovering from all the chemo and surgeries and all the side effects that come with them, whether I like it or not. I don’t like this new life, this new normal, however temporary it may be. I want my old life and my familiar rhythms back. Some disruption can be fun, or creatively re-charging; but this is not that kind of disruption, and I don’t want it. I’d shake my fist again here but I’m too tired.

Hair Today, Gone Tomorrow

Posted by: julia

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

(Sorry, couldn’t resist that post title.)

So a few days ago I went in to my trusted hairdresser Tracy (whom I’ve known for many years...she was the one who transformed me from long hair to shorter hair about 8 years ago) for my chemo haircut. In other words, the “cut it all off before I lose it” haircut. I had many people counsel that it would be easier if I had a little transition time with super short hair before getting to total baldness (and I think that was wise advice). I’d made the appointment a few weeks ago, and was dreading it as the time approached. Not because I thought I’d look bad with short hair, or that my hairdresser would do a bad job (she’s awesome). Rather, I was dreading it because I knew it was going to be another externally imposed transition, one that, just like with the boob reduction, touches on (and frankly, squeezes and stomps all over) core presentation of self and body image identity issues.

Now, I’ve done a lot of identity work in my life around my “outside standard beauty norms” body. (I’ve blogged about some of this before.) I had grown accustomed to and finally even proud of my zaftig curves, my curly hair, my Jewish nose. Sure, I knew I’d probably benefit from losing some weight, but I’d mostly made my peace with the pros and cons of extra flesh and knew how to work with it.  I had also finally gotten to a point in my life where I was feeling pretty confident about my personal style (the clothes I wear, my hair and jewelry and accessory choices). So in general, I was pretty happy with the way I looked and the self I presented to the world. But cancer came along (AGAIN) and has been messing with that confidence, over and over. First it was the vast reduction in boobage (which even now nearly three months later, I am still displeased and distressed about, and we’re not even done messing with the boobage yet). Now it’s the hair. Dammit, I was happy with my hair. I had finally settled on a length and style I liked, I had dialed in my preferred styling products, and I was enjoying having all the sparkly colorful tinsel bits in it.

Every year for the last 24 years I have used my birthday as an opportunity to reflect back on an experience that loomed large in my personal biography: my diagnosis with Hodgkin’s Lymphoma on the day of my 23rd birthday. (You can read past blog entries about it here, here, here and here.) It has been a good practice, a cyclically occurring opportunity to ever more deeply appreciate and commit to the hard-won lessons and transformations that that moment birthed for me, and to the person I’ve become. I’ve also used it as an opportunity to enthusiastically remind myself that I am still here, and that no matter how chaotic or tragic life sometimes feels, it beats the alternative. Life is complicated, yes (and it grows ever more so as I age); but it is good and I am glad to be still around to appreciate it.

Ah, but this year is a particularly complicated and emotionally-mixed birthday. I can’t celebrate my “still here, fuck you cancer!” anniversary with the complete, 100% positive feeling of victory that I used to...because here I am again, dealing with cancer (and not even close to done with this phase yet). And it’s a bigger threat this time: the treatments will not be so easy to get through, and the overall narrative feels like it has escalated closer to pessimism (because the second time you have cancer you are in a different story than “I had it once and I beat it”). There is a more urgent sense of existential angst and fear of the unknown that is back again now after having finally been beaten back by decades of watching the cancer experience slowly recede in the rearview mirror. It’s scarier than I remember. In fact I think this is the most consistently anxious and scared I’ve ever been. I'm trying to stay emotionally open and "keep it 100", but it's both difficult and humbling.

In addition, this particular birthday marks a sort of last hurrah or farewell to my “normal” life for a while, since I start chemo treatments tomorrow and that is going to be a tough row to hoe for a while (not to mention the recovery from the double mastectomy to follow). So it was important to me to celebrate as fully and joyfully as possible by doing as many of the things I love as possible. I’m happy to report that I was pretty successful at that celebrating stuff...successful enough to have delayed writing this blog post for close to a week. I ate delicious food with people I adore, I got all dressed up in fabulous outfits (twice!) and played amongst the art with friends at the Edwardian Ball, I saw amazing acrobatics and listened to excellent music, I talked and laughed and processed with my peeps. It was as good as a birthday gets...and possibly even a little more sweet than usual given the knowledge that it represented an ending of sorts.

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