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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 ...
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  • 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 ...
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  • 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 ...
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  • 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 ...
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Parentheticals

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

The Plot Thickens (and Loses Its Hair)

Posted by: julia

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

Today I had a long (2+ hours), informative meeting with a new doctor at UCSF, a medical oncologist named Dr. Majure. Like all the other staff I’ve dealt with at UCSF, she was lovely and smart and compassionate and I liked her a lot (despite the fact that she’s a newly minted doctor in her 30s and thus a little harder for me to take seriously than the ones that are older than me). She double-checked all my overall health and previous Hodgkin’s treatment details, patiently answered my somewhat scattered questions and gave me a bunch more information about Tamoxifen (while the side effects are not as scary as I thought they might be after my internet research binge, she basically shot down Dr. Ewing’s theory about a lifetime of Tamoxifen being any kind of a good idea). Then we talked about some of the details of my recent pathology reports that had previously not been flagged for attention (or at least *my* attention).

Up until this point, all my conversations around pathology had centered around how delightfully small the tumor was (1.1 cm), how good it was that it was so responsive to estrogen and progesterone (because that meant we could treat it with hormone therapy), and how great it was that the lymph nodes were clear of any sign of cancer (so far). So I was starting to feel pretty optimistic that I’d be getting away with “just” surgical treatment followed up by a few years of prophylactic Tamoxifen. But in what seems to be almost a UCSF tradition now, I found out some new information that really changed things—plot twists in the saga, if you will. Dr. Majure pointed out that there were some additional things in the pathology reports that she was concerned about, namely that my tumor was typed as “Grade 3” (e.g. relatively fast growing) and my Ki-67 measurement (please don’t even ask me what that stands for, I’m too afraid to Google it) was over 60% (when ideally you want that number to be somewhere around 3%, I believe). To her, these were signs that the type of breast cancer I have is a fairly aggressive kind, and so unless the oncotype results come back with a different assessment (which she felt was unlikely, but we’ll do it anyway just to make sure), she said she would recommend chemotherapy in addition to hormonal therapy, in order to make sure that any remaining cancer cells would be blasted out of my system wherever they might be hiding before they could make new tumors. And I’d need to start that ASAP.

It will probably come as no surprise to learn that I was greatly disappointed and upset to hear this.


Existential Angst and Identity Work

Posted by:

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 risk...it 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.


Follow Ups, Decisions and Self-Love

Posted by:

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

It was a crazy week last week so I didn’t post about this as promptly as I wanted, but better late than never.

I had two follow up doctor appointments last week, one on Monday with Janet the plastic surgery nurse and one on Friday with my surgeon (Dr. Ewing, the mighty team leader). Janet took a look at all my incisions and pronounced me “good” and said everything appeared to be healing up well. She told me I could lift a little more (10-15 lbs instead of 5-10, which means now I can finally lift my handpan, though I should still be cautious) and reach a little farther over my head (120 degrees instead of 90) and cut down or cut out the ibuprofen any time I wanted. I am still supposed to avoid any kind of strenuous activity or exercise that would get my pulse rate up too high (“have Catholic sex”, she said, which I took to mean let someone else do all the work) for another few weeks. I will go back next week and get the remaining stitches out, and by New Year’s (six weeks out) I should be officially finished with this recovery period. So that’s all good news.

The follow up with Dr. Ewing also went well, but as seems like the tradition now with these appointments, it also gave me some new information to think about. Dr. Ewing went over the results of my pathology report with me (there wasn’t really that much to say other than “all clear and yes, the tumor still tests as estrogen/progesterone positive”) and we talked about the recovery issues some more. She said I could stop the antibiotics (yay) and gave me a referral for physical therapy to deal with the “cording” (i.e. scar tissue) that I was feeling in my armpit, though she also said that the cording would eventually resolve on its own. She told me not to worry too much about lymphedema now, since if it was going to show up at all (which she said was only a 2% chance...I didn’t realize it was that low) it wouldn’t be for another two years. I didn’t realize there was such a lag time there either...I thought it was something that would show up during recovery but apparently I was wrong on that one too. But I’m happy to put this worry to rest. I didn’t get lymphedema last time I had lymph nodes removed and with only two nodes removed this time I’m feeling optimistic I won’t this time either.


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