Blog (Irregular Reports From the Front)

(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.

As it turned out, the short haircut came out pretty dang cute. I have been described variously as “adorable”, “sassy”, “rockabilly”, “academic feminist” and “a Nagel painting”. I do look adorably butch, if I do say so myself. And I’m fine with all that, I’m even grateful that it turned out so well, but that isn’t really the point. The point is that as cute as I may be in this new incarnation, I DIDN’T CHOOSE THIS. So it’s weird for me when people compliment me on the new hairstyle (or for that matter on the new boobs). Even with all the positive feedback that I do look good with short hair (and that’s a good thing, since I’m gonna have short hair for probably at least a year before it grows back to something close to the length it was), I find myself mopey and irritable about it—because every time someone brings it up, or every time I look in the mirror, or every time I shower, it is literally an “in my face” reminder of how out of my control this whole cancer saga has felt so far. It’s like an advertisement for change, a repetitive warning not to get complacent because boom, at any moment the familiar and preferred may be yanked away whether I like it or not.

Here’s the other thing: this short hairstyle looks good enough that it could very well read to other people as a new style choice, and it can totally “pass” for now as a “normal” identity (albeit quite different from the one I used to present). So other than the possibility that I’ll be read by those who don’t know me as a butch lesbian rather than feminine straight woman (which actually kind of amuses me), the only identity work that comes with this haircut is in managing reactions from those who *do* know me but don’t know why I cut my hair. But in about a week or so, when it all falls out and I’m left with no hair, it’ll be pretty obvious that I am not merely choosing a new style (or a butch lesbian), but rather that I’m a cancer patient. So that “cancer patient” identity will be forcibly foregrounded, unless I choose to hide or disguise it (which truthfully I’m not that interested in doing). And “cancer patient” is a stigmatized identity (even though involuntary), so it’s going to be problematic just to look in the mirror, let alone walk around in the world. It will emphasize the cancer identity as a primary identity, which will have the effect of shoving all the other identities further down the totem pole, whether I want that or not. All people will see at first is the cancer me, not the mom me, or the writer me, or the handpan player me, or the burner me (ok, they might see the burner me if I get too far into the crazy hats). I have mixed feelings about that idea. On the one hand, I mostly hate it that the first thing people will associate me with right now is cancer, this thing I didn’t choose and don’t like and don’t ever want to deal with again. On the other hand, well, I’m thinking about my cancer saga all the time, I guess I might as well let other people in on the obsession some.

Okay, okay: it’s clear that there’s a struggle here on the way to acceptance. Don’t get me wrong, I’m prepared to submit to the inevitable; in fact, I’ve been expecting it for some time, so I’ve had a chance to plan my response. I could have chosen to cold cap or wear a wig, but I don’t want to cover up (see what I did there?) what’s happening to me. I have every intention of doing things “my way” and using this as yet another opportunity to practice flying my freak flag high and not giving a fig what other people think. I’m proud and determined to rock the bald look and not hide or be ashamed of what is happening to me (part of my whole “keeping it 100” resolution). Maybe I will even provide some inspiration to others who are going through or who will go through something similar.

However, I just want to make it perfectly clear that even as I do all this, I am also shaking my fist in defiance at the universe for having made me *have* to do all this, against my will. Because each treatment that happens, each side effect I endure, each change away from my previous "normal" self I experience on this treatment adventure is still a damn lemon, no matter how sweet the lemonade I make of it during or afterwards. Fuck you, lemons, and fuck you, cancer.

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 23^rd 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.

But now the birthday is over, the celebratory excitement fading away into noise like the last notes of a pop song being talked over by an obnoxious DJ. And I find myself finally with enough space to think through what those hard-won lessons from past birthday reflections mean to me today, right now, facing cancer again and feeling slightly less confident about the outcome. Am I still convinced that cancer can be a gift? (Yes. Albeit a gift no one wants.) Have my priorities clarified again, like I wanted? (Yes. But there’s more going on and more at stake now so it’s more complicated to prioritize in a linear fashion.) Did I take my good health for granted? (Yes. Dammit, yes. It’s so hard not to.) Am I still brave and strong, tempered by my trip through the valley of fire? (Yes. In fact, it does me definite good to remind myself of that here on the eve of starting my chemo treatments.) Are other people still scared of illness, and occasionally having difficulty responding to me in the way that I’d prefer? (Of course. And I still have compassion for that.) Am I still unafraid of dying? (Mostly...but see above re: things being harder now that there’s more at stake.)

There are other lessons, but I’m finding myself particularly caught up again in this one tonight:

Sometimes you just have to (literally or metaphorically) lie there and breathe. Nothing else is expected of you; nothing else is needed. Movement will resume in good time.

And so will hair, and so will energy; so will art and optimism, helpfulness and good works. All things will return, God willing and the creek don’t rise. Even though I’m still in the middle of the learning, I sincerely believe that I’ll still be reflecting on those past lessons and any new lessons learned this time around for the next 20-something years.

[Well, I meant to get a post up about my New Year’s Intentions last week and then I got clobbered by the news about needing chemo treatments. I’m still reeling about all that, but at least it helped clarify my intentions. Anyway, onward.]

Last year I intended to trust more, and while that was certainly a challenge (one that will always be with me), I think I did do more trusting. I especially practiced that surrender to trust that comes from overwhelm...there were too many times where my usual plan-ahead, multitasking, project manager mode just wasn’t possible so I had to get comfortable with triage and just-in-time problem-solving and with trusting that everything would be okay. And it generally was, so trust was easier.

This year, it felt harder to pick an intention, largely because there was so much chaos and uncertainty swirling around me that it felt somewhat self-defeating (or at least overly optimistic) to set an intention. I did come up with some personal projects I wanted to commit to: blog more, start yoga again, start using Instagram again, and of course that perennial classic, FINISH THE DAMN BOOK. But though I have started several of those projects already (oh hi, Parentheticals!), I am also vividly aware that any and all of these are likely to sink with barely a bubble into the murky swamp of discomfort and depression as things continue to evolve with my cancer saga (not to mention all the other life drama). Yes, the year is still young and there’s plenty of time to start things anew or continue slogging away at things; but I think the only things I can really commit to are being gentle with myself about expectations and settling into whatever pace I can, even if that pace is herky-jerky and wildly inconsistent.

Well, that’s not entirely true, now that I look at it and really think this intention thing through. There are a couple of things I do intend to commit to, even in the face of all this change and uncertainty coming my way. The first is courage. It is absolutely my intention to hold on to, to practice, and to share courage as I move through 2016. I am not stupid enough to equate courage with fearlessness—of course I will be fearful, I’m super frikkin’ fearful right now even as I type this—no, I will be courageous. I will be brave, I will be stout-hearted, I will be valorous (a woman of valor with a price far above rubies!) I will be tenacious and keep getting up and dusting myself off and hobbling or swimming or dancing forward, always forward (and never straight), and always aiming for firmer ground as the swamp bubbles around me.

The second thing I intend to do in this new year I still have the privilege of experiencing is to take pleasure in what I can in the moment, without worrying about what is coming or what has been. To do what I want instead of what I should (with the exception of things that cause hassle or hurt to others), and at the very least to appreciate the good bits of where I am and who I’m with and whatever is good about what is happening right there in front of me. I intend to identify and embrace any and all joy available to me, and suck that joy dry in order to sustain me on the journey through the swamp. (Forget sucking the marrow of life, I prefer cruelty-free vegetarian metaphors—as anyone who has had to put up with my Passover symbol substitution of a beet for a lamb shank will no doubt tell you.)

Because even in darkness there is light, and eventually sorrow fruits into wisdom. And I am determined to make one hell of a tasty fruit salad once I get out of this swampy bullshit.

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.

“But I’ll give you the kinder version,” she twinkled, and then proceeded to lay out the supposed advantages of the Horrible Choice A chemo treatment plan over the Even Yet More Horrible Choice B chemo treatment plan. I won’t scare you with the details of Horrible Choice B, except to say that it would be considered less than ideal because of the elevated risk of secondary leukemia and cardiotoxicity (both of which I am already at elevated risk for because of the Hodgkin’s radiation treatments). Ok fine, so Horrible Choice A it is. That’ll be 4 individual infusion treatments, each 3 weeks apart (which is considered such a relatively brief course of treatments that I won’t have to have a port implanted in order to make the chemo-giving more efficient, so um, yay I guess). Each infusion will consist of two drugs: Taxotere (aka docetoxel) and Cytoxan (aka cyclophosphamide), administered via an IV drip over the course of several hours. Though it’s hard to guarantee specifics until I actually try it, the usual side effects will likely apply: fatigue, nausea, hair loss, nail changes, mouth sores, fluid retention, diarrhea/constipation, muscle/joint aches, tingling of hands/feet, foggy brain, and my favorite (not): early menopause.

Well fuck. As if having a double mastectomy (and future reconstructive surgeries) hanging over my head wasn’t bad enough, I get extra bonus chemo on top of all that? This is not at all what I wanted, nor is it what I’d consider “kind” (except in comparison). I’m going to do it, because even though the thought of enduring multiple rounds of systemic poisoning and the associated side effects scares the ever-living shit out of me, I like that scenario a whole lot better than the one where I wind up enduring a slow and painful death by metastatic cancer. But I am not yet at the point of being brave and dispassionate about all this. Right now I’m more like “DON’ WANNA NOOOOOOO FUCK FUCK FUCK HOW CAN THIS BE HAPPENING TO ME?”

[Here we pause for a deep breath and maybe a few hugs or a little chocolate.]

Ok. So what else? Let’s see. On the positive side, Dr. Majure also reassured me that there were a variety of things I could do to help alleviate chemo side effect symptoms, like anti-nausea drugs and such. I’m going to look into alternative medicine support as well (acupuncture, massage, herbal remedies, etc). She also told me about a new solution that seems to help with hair loss called a “cold cap”, where you wear what amounts to basically a big hatful of ice while your chemo is being administered and this supposedly prevents the hair cells from taking up too much of the chemo drug and thus preserves at least some of your hair (but of course this cold cap thing is not covered by insurance and so must be rented at fairly exorbitant cost). I’m not sure if I want to do that or not...I think I need to talk to some other women who have tried it (UCSF has a program where they match you up with other peers who have been through treatments already).

All this being said, I think the new treatment timeline now looks something like this: meet with the “chemotherapy educators” to talk in detail about what to expect, then start chemo at the end of January (once the oncotype results are back, and frankly, after my birthday because fuck no I am not having chemo around or on my birthday). I would finish sometime around the end of March, take a month off to recover, then have the mastectomy surgery sometime around the beginning of May. Recover from that and go through all the implant expansion for however long that takes, and have the final implant surgery sometime in maybe late July or early August? I dunno. I can’t even think that far ahead.

Actually I think I have to stop thinking about all this and go to bed now. I still have to get up in the morning and get the kids off to school and do the zillion other things I always have to do, no matter how much I feel like staying under the covers and moping. Life goes on, and that’s mostly a good thing. More processing to come, I’m sure.

Here we are again: 2015 is over, and a new year is beginning. As always, I’m stealing some time away during our family vacation at Stinson Beach to write up these reflections on the year that has passed. It’s been a mixed bag of a year, that’s for sure. Some was pleasurable, wonderful, beautiful, exciting and fun; some was the exact opposite. The first two thirds of the year were a mostly enjoyable blend of the usual hurly burly of personal projects, parenting and travel; the last third or so of the year got clobbered and overshadowed by big personal life drama when I was diagnosed with breast cancer in mid-September, right after coming back from Burning Man.

But let me back up and do the month-by-month review and put this in vaguely chronological order, for posterity’s sake. Again, I didn’t journal as much as I would have liked in 2015, but I do have my colorful quilt of a calendar and my photo log to remind me what I was doing so I’ll try to reconstruct as best I can.

January was as always reasonably quiet. We helped Eli finish up the high school application process. We saw the Wood Brothers in concert. We worked on decluttering our house some. I went to a tiny new little Comic-con in Petaluma (“Lumacon”) with my buddy Heather and sold a bunch of books. We had a fun and memorable weekend in honor of my birthday in Glen Ellen drinking wine and eating delicious food with Mark and Angelo. My cousin Lauren and I had a memorable weekend with our grandma going thrift store shopping for a new armchair for her new place here in San Rafael (she moved out here from Florida at the end of 2014). I spent hours and hours dealing with the insurance company and the tree removal guys and the carpenter dudes who were rebuilding our crushed fence.

In February I took my Grandma to go hear Bill Clinton speak at the Civic Center. I worked on getting our home mortgage refinanced (which was more complicated and took up way more of my time than I wanted it to, but at least it was ultimately successful). We continued with the fence building (it came out great though, with little glass marbles in it for decorative coolness, just because I wanted to). Eli had a sleepover/computer games birthday party. We worked on a Science Fair project with Isaac (making rock candy). I worked on getting things ready for our synagogue Purim-palooza service. We finally had a giant garage sale with all the stuff we had decluttered.

March brought with it Purim and FOGcon, with a writer retreat at Stinson afterwards with Gary and Heather. Isaac had a bowling and pie birthday party. We met up with Dave, Keri, Jonah and Zinnie for a day at the Santa Cruz Beach Boardwalk (I hadn’t been there in a loooooong time) and the UCSC campus (also hadn’t been there in a long time). We saw Ani Difranco in concert. We found out that Eli had been accepted to both of the schools he’d applied to, and after much deliberation, chose one: The Marin School.

In April there was our traditional family Passover, and Eli went off for a week on a school trip during mid-winter break to Washington D.C. (it was weird being without him for so long, but he had a pretty good time.) Then things got a little weird when I had a bad PTSD-like flashback from a visit to the dermatologist where the doctor cauterized a mole he was removing and I went right back to the memory of the original lymph node biopsy that started the whole Hodgkin’s Disease story. It made me freaked out and then depressed and generally threw me for a loop emotionally for at least a few weeks, and I was having a hard time getting out of it until something new and surprising popped into my life: the handpan. (I actually blogged about this earlier this year.) After much research and a little luck, I acquired my first handpan (Saraz D Dorian 10), found a fabulous teacher (Judith Lerner) and started playing. Anji and I went to the How Weird Street Fair (Carnival themed) and met a new burner friend, David. I started making freak flag blanks in preparation for Maker Faire and Burning Man.

In May we visited DKJZ in Chico for a weekend. I made a bunch of freak flag blanks. We celebrated Mother’s Day with my parents, aunt and uncle and 94-year old grandma. I killed it again at Maker Faire with my Fly Your Freak Flag High booth (if I do say so myself) and then as has also become a tradition, I went off to indulge in multiple days of interesting feminist spec fic discussions at Wiscon while the boys all went to Kublacon. Another momentous thing happened at some point during this month, and that’s that I was asked to consider joining the Board of Directors for our synagogue (there was an unexpected vacancy). I said yes, mostly because it was such a great group of people to be doing good work with.

Then all of a sudden it was June and there were the usual end of the school year projects and concerts and hoo ha. We started the build for our Burning Man art project (the Pink Heart Carnival, complete with the Inner Freak Show Booth and the Wheel of Participation, along with a few other things). We visited Rio Vista for our nephew Finn’s birthday party. Eli graduated from middle school and in honor of that momentous occasion we helped throw a casual multi-family bbq party in Marinwood park. Then right after that we all took off for a family vacation with my parents and brother’s family in Maui. We were there for two weeks (including for Josh’s and my actual 20^th wedding anniversary), which turned out to actually be a bit longer than it probably should have been, but worth it. For the first time we spent an overnight in Hana and got to go swimming in the gorgeous and sacred 7 Sisters Pools, which was one of those perfect peak experiences that I will always treasure. A few days after that I cut my hand really badly when a glass I was washing shattered, and wound up driving all the way across the island to the Maui hospital emergency room to get stitches. Though it took hours to resolve, the fact that both my parents and my brother had come with me made it at least good company, and the hand healed up well (and doesn’t seem to interfere with my handpan playing, which is of course what I was worried about.)

July started with our friend Zoe getting married out in China Camp and the traditional Marin County Fair/4^th of July shenanigans, and then was mostly full of Carnival building and Iocari Games summer camp (which was hosted at our house). Though Josh and I did also sneak out for a few days to Ashland while the kids were away at ID Tech programming camp at Stanford, and that was awesomely fun as usual. (High point there was playing handpan in Lithia park on a beautiful summer day to accompany our new friend Gene while he taught T’ai Chi and the “pretty little city deer” wandered by.) I also went to the Rivertown Revival in Petaluma with Anji, and at the end of the month, another handpan arrived in my life (Halo Stratus Oxalis) and I had fun playing them both with whoever would play with me.

August started off with an amazing, fabulous trip that in hindsight was probably the highlight of the year: Josh and I went to Paris for a week in honor of our 20^th anniversary (the kids were away at Camp Newman). We had such an awesome time exploring the city, seeing art and architecture and enjoying the temporary fake beach and even a flashmob brass band along the Seine. And of course we enjoyed the heck out of eating and drinking fabulous French food and wine...in fact we had one of the most amazing multi-course, “chef’s choice” farm-to-table meals I’ve ever had the pleasure of experiencing at a place called Saturne. We stayed in a little 5^th floor walkup apartment in the Left Bank and Josh made me breakfast in bed and amazing dinners from ingredients fetched from the local farmer’s market and we never wanted to leave. But leave we did, and came back to final week of Iocari Gaming camp and a whole lot of build and prep for Burning Man. Isaac started school (5^th grade), and Eli prepared to start high school (we missed his actual first week of school because we were at Burning Man, but did a lot of the orientation stuff with him before we left). We finished the Carnival and left for Burning Man at the end of the month, but right before we left I went to do my annual mammogram, which came back with a questionable dot so they did it again and then wanted me to do a biopsy. I asked if I could put it off until after Burning Man, and they said yes, so I put that aside while we finished prepping all our stuff and getting ready to go. (This was a special year of Burning Man and required extra effort not only because we made a humongous and cool art project, but also because we took my mom and her friend Rhoda for the first time.)

September was definitely a mixed month. We had a great burn (more detail in other blog posts) and arrived home in early September happy, exhausted and decombobulated as per usual. But I’m a responsible girl so I scheduled the biopsy and endured same, and then right after that it was Rosh Hashanah. On my way home from services I checked my voicemail and found a message from the Breast Health Center asking me to call them about my biopsy results. When I got home I called them and they told me the biopsy had come back showing cancer. It was a hell of a way to start off the new year. After that there was a whole lot of waiting around to do more tests and have more doctor consults and some wrangling with insurance about what or who would be considered in-network, and meanwhile life went on, albeit with a strange sort of cognitive dissonance to it. I helped Mom set up and break down her show at the Mill Valley Fall Arts Festival. Anji and I went to the Superhero Street Fair in SF.

October was more tests and more doctor visits and more cognitive dissonance. Isaac ran for Class President (and lost). We went to the Burning Man SF Decom event and set up the Freak Booth and the Wheel of Participation again in the park next to our Pink Heart camp space. It was a lot of work but once again gratifying to see people interacting with and enjoying what we had made. (Josh and I also played handpan there with some amazing violinists, which was really fun.) Mid-month, Josh and I went away for our Loveiversary for a weekend at the Sonoma Mission Inn and had some much needed relaxing spa time and a lovely wine cave dinner at Benziger Winery. I went to go play handpan for my friend Eileen’s Forgiveness retreat at Mt. Madonna. We got to be the exclusive guests/ketubah signers for Adrienne and Jim’s “tiny Jewish wedding” on her parents’ porch in Santa Venetia (and it was lovely). I had a few close girlfriends come over to my mom’s house and help me make a “boob cast” (a plaster cast of my torso, to commemorate my soon-to-be-removed boobies). Anji and I got all costumed up and went to two different giant Halloween events: Ghost Ship and Phantasm.

Early November was spent anxiously waiting for surgery and trying to keep myself busy and distracted. Eli and I went to workshops and build for Dickens Fair (and brought a couple of his buddies along with us this time). I spent a lovely afternoon playing handpan in a wine cave with my teacher Judith, and she recorded some of the session for her new CD. I drove Isaac’s class on a field trip to the Legion of Honor on a gorgeous San Francisco autumn day. Then finally it was time for my first surgery, which was a lumpectomy + lymph node biopsy and a breast reduction (in preparation for the mastectomy to follow). The surgery went very smoothly and my physical recovery time went better and easier than I’d feared...by the time week two rolled around I was ready and raring to go back to Dickens Fair, which I did for the December weekends. We had a nice quiet small Thanksgiving with my mom and dad and Marian, and a more boisterous but still nice day-after-Thanksgiving time with a whole bunch more people. 

December was busy and full of Things, as usual, which was a bit of a struggle since my energy level was still not 100% post-surgery. There were three weekends of Dickens Fair, the traditional Hanukkah party at the Teitelbaums and latkes at our house, our big Black Turkey holiday party (19^th annual!) and a big Archer family celebration at Brandi’s house for Christmas. We went to the city to see Mark sing in the SF Gay Men’s Chorus holiday show with Josh’s parents, which was a fun outing. We got all excited about the new Star Wars movie, which we saw on opening night with the kids and a bunch of our friends. (Then the boys and I saw it again a few days later at Skywalker Ranch, courtesy of our friends the Semanicks.) Then we packed up and came out here to Stinson for our familiar beach vacation and New Years celebration.

So yeah, looking back on it 2015 had some great things (handpan! Hawaii! Paris! Star Wars!) and some not great things (cancer!). Although I am sincerely hoping for more positive, fulfilling and exciting things in the year to come, I am also expecting that 2016 (at least in the first half of the year) will bring me significant challenges, mainly because I’m not yet done with this second visit to the cancer rodeo. I’m fairly certain that the familiar flow to my year will be disrupted, I just don’t know how yet. But I will take a deep breath and count my blessings, then hold on to this half-full glass and raise a toast to the New Year nonetheless.

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.

Identity work is challenging at best and often scary and filled with grieving as old identities die away and new identities are born. It takes great courage and fortitude to stay optimistic during this process of integrating stigmatized or disagreeable identities—and I’ll be honest, I’m struggling with it. Some days I am more courageous, some days I get lost in the fear and grieving. I already did a big bunch of identity work back when I was first diagnosed with cancer back in my 20s as I grappled with the shift from healthy/safe to ill/at risk and then back again (although as I myself found during the research for my MA thesis, you never really completely lose the cancer identity once you’ve had it—it just hopefully fades farther and farther into the background). But here I am again, 23 years later, realizing that yup, the cancer identity is still here and there’s a pretty high risk that it will be here over and over again as long as I live. I am grappling with the idea that I’ll never be able to put a period on the end of that “I had cancer” sentence. The best I can hope for are ellipses and maybe a question mark: “I had cancer...and then I had it again...and then...?” Put another way, it’s becoming clear that not only am I not out of the woods yet, I’m realizing that the forest is vaster and darker than I ever knew (and very likely has some scary monsters in it that I don’t even know anything about yet.)

So: how to reconcile all that dark and scary existential angst and identity work with the “audacious optimism” state of being I have been such a faithful practitioner of for so long? How do I accept what is without hiding or panicking? How do I sustain a sense of courage all the time, day in, day out, moment to moment, when the forest is so big and dark and I’m so little? How do I find meaning and keep a sense of capability in a situation that has caused/is causing/will cause so much suffering, and which is so uncertain and unpredictable? I really don’t know. Sometimes, I just won’t. I won’t reconcile, I won’t accept, I won’t sustain, I won’t find or keep or have. And sometimes I will. Hopefully I’ll have more “will” than “won’t” times, and that’s all I can hope for right now. Repeated applications of love help, and “keeping it 100” honest communication seems to also. Other than that all I can do is just keep swimming, as Dory from Finding Nemo might say. Keep swimming, keep walking, keep going. Jettison judgement. Feel all the feels. Communicate. Accept. Continue.

Because what else ya gonna do?

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.

Then we started talking about next steps, and here’s where it got interesting. I already knew that the next step was going to be talking to a medical oncologist about hormone therapy (i.e. Tamoxifen, which removes all estrogen from the body and therefore starves any new cancer before it can go anywhere) and the possibility of chemotherapy (or not). Dr. Ewing said that there was an additional test they could do on the tumor which she was sure the medical oncologist would order but she wanted to order it now just to get things going, and because she was thinking about something else. That test is called an “oncotype”, and would give us more information about the specific type of tumor mine is (e.g. aggressive and fast growing, or lazy and slow growing, or anywhere in between). The hope here is that unless it proves to be a particularly aggressive or fast growing type, there will be no need to further “salt the earth” with a round of chemotherapy. I should have the results of that test back sometime around Christmas, and I have an appointment with the oncologist scheduled for the first week of January to talk about all that.

But then Dr. Ewing said that she was thinking about something else, but wanted to caution me that what she was thinking about was NOT “standard of care” nor something she had any data whatsoever about. But as she put it, “this is how we push things forward.” What was her idea? Her idea was that if the oncotype test came back with a type that was on the lower-risk side (e.g. lazy/slow), that perhaps I might want to rethink the rush to the double mastectomy. Given that my tumor is estrogen/progesterone responsive, what if, she asked, instead of doing the double mastectomy now, I could instead leave things as they are and commit to taking Tamoxifen the rest of my life? Her thinking here is that although a double mastectomy significantly reduces risk because it removes almost all the growing ground for future cancer cells, it still doesn’t remove it all (since even with mastectomy there is still some small amount of breast tissue left)—that’s why the standard procedure is to put a patient on Tamoxifen or similar hormone therapy for 5-10 years afterwards (5-10 years after a cancer diagnosis is the prime danger zone for reoccurrence). But if Tamoxifen alone reduces risk significantly enough and the oncotype also reassures us that any recurring tumors will not be immediately dangerous (and therefore easier to deal with if they do pop up), perhaps the risk reduction would be equivalent enough to the double mastectomy to consider that instead.

I’m not sure how I feel about this idea yet. Of course I like the idea of not having to have the mastectomy and reconstruction surgeries. But I have no idea what decades of Tamoxifen will do to me (I don’t even fully understand yet what the downside of taking it “just” for the usual 5 year period is beyond just “early menopause”--that’s something I hope the medical oncologist will be able to articulate for me). Dr. Ewing said she had no data. I’m not sure that hormone therapy like this has been around long enough for there to even have been any long term studies of its effects. I guess what it really comes down to is looking at the risk percentage numbers of various options and then re-evaluating what my own personal risk tolerance is. In general my attitude this whole time has been “hell no I don’t ever want to have to go through this again, and anything that will significantly improve my odds of never having to do this again is something I want”. Hence the decision to do the double mastectomy, because that certainly gives me a big boost in the amount of risk reduction which I need to offset the boost in recurrence risk caused by my previous Hodgkin’s radiation treatments. On the other hand, as Dr. Ewing also pointed out, the reduction alone does offer some risk reduction (less boob=less breeding ground for new cancer) and a continuous salting of the earth with Tamoxifen may be enough to bring that risk down as well. The 100,000 dollar question is, are the as yet not fully understood long term effects of Tamoxifen (and zero estrogen/progesterone) bearable enough to make that option more attractive than the known short and long term effects of the mastectomy/reconstruction process (which, let’s not forget, includes further surgeries down the line since implants don’t last forever)? I am looking forward to the conversation with the oncologist in order to find out more information that might help me think about all this further.

And now for the feels you’ve all been waiting for (if anyone has even read this far). First off: goddamn, I am so sick of uncertainty and all this difficult, high-stakes decision-making. Every time I think I’ve finally made sense of what’s happening and decided what will be best for me, things change. Yes, yes, I know that’s just like life, but that doesn’t mean it’s comfortable or that I like it. In fact, I hate it. I feel this sense of crushing pressure that I MUST MAKE THE RIGHT DECISION and anxiety that if I don’t, I’ll die (or at least be damned uncomfortable and/or regret it). I’m trying to hang on to the gratitude that at least I have top-notch professional educated doctors who are helping me get cutting-edge care and giving me options and control over my own destiny rather than just dictating what happens to me, but still, it’s hard to have this much power and responsibility for my own care.

The other feels I have to mention in the spirit of full disclosure are the ones that have to do with my new boobs and my new body image. It was hard to know how I was feeling about all that while I was still so swollen and stitched up and while I was still worried about the pathology report and whether or not I was in additional danger, but now that things have healed up some and the immediate life-threatening risk has proved to be less urgent, my brain can turn to lesser concerns and smaller griefs that were postponed. So let me be honest here, since honesty and “keeping it 100” is what I’m trying to bring to this whole process: I don’t like the new boobs. Even though they’re not quite done healing, and even though they’re my real flesh and not implants, they feel like frankensteined, half-transformed, and only semi-real boobs to me. They’re too small and they’re too high and they’re too taut. They’re triangular. The nipples point forward and the boobs point to the outside and I don’t have cleavage unless my bra shoves them together (plus the cleavage is one third the size I’m used to). I have been looking at myself in the mirror and I don’t like the way I look. There’s too much space between my boobs and my belly button. I have changed from an hourglass to a pear figure. My stomach sticks out way past my boobs and I feel even yet more bottom heavy without something to balance me on top. Actually I literally feel unbalanced, like when I was pregnant (but for nowhere near as good--or as temporary--a reason). I keep hitting the sides of the boobs with my upper arms, which is weird (not to mention painful). My shirts fit strangely now. Everything is just...off.

I’m not reassured by everyone’s chirpy, well-intentioned comments that these boobs are “beautiful” (every time I hear that my inner feminist whispers “according to whose beauty ideals?”) and that it’s so great to have such young-looking, full and perky boobs (did the old ones suck so much?) Even if I buy into the problematic beauty ideal, let’s face it, I’m a nearly 47-year old overweight mother of two. Boobs like this don’t look right on me.

Ok yeah, I’m still mourning.

And yet I feel selfish, and ungrateful. Here I am alive and mostly well, with all new boobs and no cancer, what am I complaining about? I guess I just need to keep reminding myself that of course change is hard, and that acceptance is a process and a practice and there’s no rush and there’s no final destination. So here we go ‘round again with the self-love, in the usual spiral dance. It’s hard now, but hopefully it’ll get easier again like it has before. Just gotta keep dancing.

Looks like from now on I will have a special reason to celebrate Thanksgiving “eve” as well as Thanksgiving itself...just got a call from UCSF with the results of my pathology report, and it’s great news: all clear! I repeat, Houston, we are clear. Clear margins on the tumor (and on the extra bit of DCIS found nearby), and clear lymph nodes. They are going to re-run the estrogen receptor test just to doublecheck the original biopsy results (which said the tumor was estrogen-positive, which is a good thing), but it would be unlikely to find it different this time through. UCSF just likes to have their own labs do the checking, I suspect (like when they made me do another ultrasound there when I’d already had one in Marin).

Wheeeeeew. The journey’s not over yet, of course, but this is absolutely the news I wanted to hear and I am super thankful. :)

I have been distracted and fatigued with visitors and even a couple of outings, so it’s taken me a while to put together another update post. I’m happy to report that I’m still healing really well. I have been managing pain with just ibuprofen and haven’t had to use any of the “serious” pain meds they gave me. I’ve been sleeping fine and napping whenever I feel like it (and since I’m a fan of naps anyway, that’s at least once or twice a day). I’ve been able to go for at least a short walk almost every day (and it felt great to be outside). Most of the issues I’ve had have been on the level of “irritating” rather than “awful”: itchy tape, prickly glue bits, sore jaw and arm, bruised hand, inflamed drain insertion sites, general fatigue. Overall though I’m doing way better than I expected and I attribute that to four things: 1) top-notch medical care; 2) the incredibly humbling and powerful outpouring of love, good vibes and care from all you beautiful people both pre- and post-surgery; 3) being from strong Russian peasant genetic stock; and 4) an optimistic attitude of gratitude (you get what you focus on).

Speaking of gratitude, the unarguable silver lining of this whole experience has been the people. My close friends and family, who have been nothing short of amazing angels of compassion and love (with a special shout out to my mom, who has been there for just about every doctor appointment and even slept over in my hospital room with me). The beautifully heart-filled folks from my various communities: my synagogue friends, my burner buddies, my writer peeps, my faire family, my parent pals. The consistently kind and caring staff and doctors at UCSF. People have reached out with all kinds of support: messages, visits, flowers, meals, cards, smiles, books, jokes, music. Especially now, in these often dark days when the rest of America and the world seems at times to be struggling with their collective humanity and compassion, the people around me have shown that goodness and love are alive and well, and I am incredibly grateful. It’s so important (for both me and the world) to keep hope and optimism going, and all these people have helped me (and the world) do so. I have a huge amount to be thankful for this Thanksgiving, for sure.

A few last notes: I had a post-op appointment at UCSF yesterday where the nurses finally took off my ratty, irritating bandages (yay) and examined all the incisions, and I’m also happy to report that they agreed that everything looked pretty good. They took out my two drains, which was a brief hurt, over quickly, but most of all was a tremendous relief. I finally got to see what had been under the bandages, which was pretty trippy. I’m still all puffy and frankensteined (and glued up), but wow is it weird to have such relatively small, taut, perky-nippled boobs so high up on my chest. I thought they’d be lighter too, because they’re smaller, but they’re not really...just a lot less saggy and long. It’s like someone pulled a string on my back and they just shrank up into me (but unfortunately with a lot more stitching). They look okay, but definitely different, and it’s still throwing me. I want to be more excited about the transformation but I think that will take some time. For the moment I’m still mostly struggling with loss and change. I can’t really get attached to this iteration anyway because it’ll change yet again after the double mastectomy in a couple of months.

This morning I finally got to take a shower and patiently rub off most of the residual sticky tape leftovers, and that felt pretty damn awesome. I’m still irritated in places, especially by the crusty prickles of glue that remain around most of the incisions, and of course the incisions themselves are still quite tender, but it’s getting better all the time. My energy is good as long as I get a nap in. I’m hoping to get the results of the pathology report either tomorrow or Monday when I go back for another post-op appointment, and whether the results are good or bad, at least things will clarify and that will also be a relief.

And then...there was recovery. It’s been about a week. Today I’m feeling pretty great, actually, but let me go back and talk about earlier in the week.

The last week has been full of visits and flowers and food and calls and cards and loving gestures of all kinds. (I have discovered that some people are flower people, some are food people, some are card writers, and some are bakers. All of them are awesome.) So many people are so eager to do something to show me that they care. This is certainly the moment when I feel all my communities holding and supporting me, and that’s a beautiful thing. I’ve certainly spent years and years involved with various communities, putting in my time and energy, and this is the reward. 

I am mostly very pleased at all the attention. (Who wouldn’t be? Flowers and food and loving words are something it’s practically impossible to have too much of.) I think that in many ways I have been healing as well as I have because of all the outpouring of love and attention that has been showered on me. (I’m not just being woo-woo; this is totally a thing. Go look it up.)

On the other hand, part of me is still struggling with receiving all the attention and the well wishes. I think there are several reasons why. Sometimes it’s just plain exhausting to socialize (this is an extrovert’s Achilles heel...socializing rather than resting). It’s also taxing to be continually gracious and thankful for each kindness (not that anyone’s making me, but that’s the kind of person I am). Receiving all that attention also activates a kind of survivor’s guilt thing for me where I find myself trying to minimize, going “oh, I’m not that bad, you don’t have to fuss over me”. Plus, as someone who is so familiar with being on the other side of this relationship and being the person who cares and gives and soothes and cheers, it is sometimes more difficult than one might think to just receive. I have to remind myself that receiving is also a gift, in that it allows other people to step up into (and enjoy) being their best selves. I know that it feels good to give to others and practice being my best self, that’s why I do it. So letting other people do it while also receiving the care and attention I need is a win-win.

On a related note, it’s definitely a fascinating sociological/spiritual experiment to see how my own honest vulnerability in public affects other people. What I think it really does is open up a window for other people to feel comfortable being honest with their feelings too, and for them to step up/over into connection more easily. I have had so many people thank me for letting them in and inviting them to come along on this journey with me, and tell me how inspirational I am. I have a hard time accepting that I am really all that inspirational, although I can see how what they are reacting to is the honest vulnerability of going “hey here are some real feelings I really have” in public, which not everyone is comfortable with (in fact, I’d venture to say most people aren’t, not in mainstream American culture at this time anyway). I’m “keeping it a hundred” (as in a hundred percent real), as Larry Wilmore would say. It’s powerful to be so open and real and to communicate through storytelling (writing, in my case). It’s what I always loved about Anne Lamott and Elizabeth Gilbert and about the myriad of bloggers I’ve read over the years. Authenticity. That’s what I’m talking about. We know it when we see it and we respond to it.

(On a side note, I think there’s a separate blog post in here somewhere about Authenticity, Acceptance and Assumptions....I seem to have been working on these concepts since at least Burning Man if not before.)