Blog (Irregular Reports From the Front)

Finally had my post-op follow-up appointment on Friday with Dr. Ewing and her surgical nurse Sarah. Much relief and a few surprises, and overall the prognosis is good. Sarah took off all the bandages (such a relief) and examined me and seemed very pleased with the results of everything, which made me feel good. My previously-radiated skin seemed to be doing great with all the assaults on it, just as great as or greater than other people’s “normal” skin would be. My incisions are healing fine under their layer of glue (which isn’t bothering me as much as last time, since I have mostly lost feeling in the area and the glue isn’t rubbing on anything tender). The expanders looked fine, and the drains looked fine (though I can’t get them out until next week when I meet with the Plastic Surgery nurse). Even my poor cored-out, bruised and currently collapsed nipples apparently looked good (one of the surprises was that under the bandages there had been special little supports called “nipple huts” for them, which explained why there had been extra dressings there—I hadn’t known.) Sarah told me that it could take up to a year before I would know for certain what areas of breast skin I would still have some feeling in and what would be forever numb. She cleared me for driving and showering (yay!), as long as I’m careful, and told me to continue not lifting things over 10 pounds (though a small amount of scooting my 15 lb handpan around is probably okay) and not raising my arms over 90-100 degrees, and to stay away from repetitive motions with my arms like putting away dishes. (I didn’t tell her about stenciling freak flags.)

After she left, I got to look at myself in the mirror finally and fully see what I had only been able to dimly feel through the bandages. Luckily I’d been warned beforehand to have “low cosmetic expectations”. The girls definitely looked ugly and strange...not only puffy and glue-streaked and lumpy, but also really high up my chest and sort of baggy and collapsed. That of course will change as the expansion commences (which Sarah confirmed will start next week—she told me to take an Ativan ahead of time too.) Still, looking at those new boobs was still an unsettling and saddening experience. I know it’s easier to have woken up from a mastectomy with at least something vaguely breast-like still in place, and I’m grateful to not have had to come to terms with my chest being totally flat and even the skin-shells missing, but on the other hand, yikes! I did not look like the me I was, or even the me I hope I will be. I am definitely modified-human-in-process.

Next one of Dr. Ewing’s new residents came in, whose name was Evan. He checked out the incisions too and we chatted for a bit about a variety of things (including the fact that it was totally fine to take Tylenol regularly and it wouldn’t hurt my liver). He then started talking about my pathology report (they do another round of examination on the breast tissue that gets removed during a mastectomy), which I’d assumed Dr. Ewing was going to do, so I was a bit taken by surprise when he told me that they’d found another tumor in the left breast (the original one was in the right breast), but that it was very small and that Dr. Ewing didn’t think it warranted checking the sentinel lymph nodes to see if it had gotten any farther. I was immediately hit with two feelings: relief (because my decision to do the double mastectomy certainly seemed to have been the correct one and I felt totally reinforced about that) and alarm (because whaaaaaat? My body had been making more cancer all this time, and we hadn’t noticed? And what about all that chemotherapy? Had the tumor been bigger and the chemo reduced it? Or had it not affected this tumor, in which case why the hell had I bothered?). Yet again, I feel like I never get through an appointment at UCSF without some major surprise.

Evan left and after waiting around in the exam room for another half hour or so, Dr. Ewing finally made it in to see me, with Evan in tow. She too examined me and pronounced me fine, and talked to me about the pathology report in a little more detail. She was very reassuring in her unconcern around the additional tumor, and said very clearly that she didn’t think it warranted any further action (and that whew, the double mastectomy was indeed a good idea). She said she’d see me again in 6 months (and in Marin, hooray), and that she hoped to have my book finished by then. :) Then she told me that I was her favorite patient (I wonder if she says that to all the girls?) and I told her that although she had a lot of competition for most awesome doctor there at UCSF, that she’d been my first and I would always appreciate the way she’d guided us through the process and been so kind and supportive. It was a whole mutual admiration society thing going on and it made me feel good.

After that Sarah came back in and put new “nipple huts” and small dressings on (which I can shower with) and gave me some new supplies and sent me on my way. On the way out I made my 6-month appointment with Dr. Ewing and got the sweet guy at the front desk to message the scheduler for Dr. Sbitani, the plastic surgeon who does the DIEP procedures, so I could set up that consult ASAP. I also got her card just in case she doesn’t call me by next week so I can call her to nag. (I’m getting pretty good at nagging schedulers at UCSF.)

Okay, I’m back. And the good news is, I’m a week and a half past the mastectomy surgery (which went as well as these things can go) and healing up great. However, it’s taken me a good long time to get clear enough (physically and emotionally) to be able to put together a blog entry about what’s been going on since my surgery. First, of course, I was all sleepy and loopy from the pain meds and the anesthetic leaving my system, and it was hard to do anything, let alone write. Then, once that fog began to lift and my body started feeling a little bit better, my feels kicked in and I had quite a few days of (understandably justified) teary upset and depression. I certainly had anticipated some of the reasons why I might be upset and depressed (see last entry’s navel-gazing), but the actual, physical reality of losing the boobs and starting the cyborg process was now obvious to me in a way it hadn’t been (and couldn’t have been) before it was actually happening/had happened right there in my body. And yeah, I’d been right—amputating pieces of your body is definitely upsetting, no matter how ready you think you are for it, how justified you are in doing so, or how courageously you look ahead to future gain. Grief will not be denied and this was a grief-worthy event.

Honestly, the mental game has been (and no doubt will continue to be) the hardest part of both the mastectomy and the overall cancer saga. Physical healing is tough, don’t get me wrong, but I’ve been blessed with a strong constitution and enough leisure and disposable income to supplement that natural constitution with a whole variety of self-care activities. And yes, I’ve had the experience and lessons learned from my first cancer rodeo to guide me and help prepare me for playing the mental game of this new cancer experience. But when the body is compromised, and the broken-scared-anxious-despairing-worthless-pointless-hopeless-grieving feels crash in with a depressive tsunami, it is really, really hard to stay positive and courageous or even involved with normal life. Time seems to drag and it feels like nothing will ever get better and new normal is too far away to bring any comfort in the now. For a good long while after the surgery all I could do was keep going and try to find ways to distract myself from thinking too much so I could get through each day, and then eventually the days would pile up and I’d make it far enough to realize that things had changed and hopefully gotten better.

And that’s what happened. Eventually enough days did pile up, and my body healed up enough, and I let the feels tell me what they wanted to tell me and tried to listen respectfully without getting too caught up in the “always/never/forever” parts of them. Now I’m starting to be able to process what’s happened and talk and write about it and arrange my narrative(s) in a way that is beginning to make sense and have some true meaning to me. So I think I’m winning the mental game again. I’m still grieving, I’m still upset and uncomfortable, but it’s better enough now that I can also balance all that with the comfort and relief that increased involvement in the rest of my life brings. I am more confident now, given the evidence immediately available to hand of positive improvement over time, that I am not always going to be this broken and weak and distracted. I am still myself, and myself is still too curious and enthusiastic about life to be put down for long. (Myself is also impatient, which I recognize is a large part of the problem here but unfortunately seems to come baked in to my personality.)

Now the challenge is to continue to let myself heal and to be gentle with myself during the emotional ebbs and flows (especially when the backsplash from the depressive tsunami comes back in). Time really is the best healer, and it really will work if only I partner with it instead of resisting or attempting to manipulate it. As much as I dislike being backed into a corner, I know I have to commit to the “slow and steady” slog, because that’s my only choice here. But it will work. It will work. It will work. You can all remind me I said this.

Yeah, I know it’s been a long while between posts, but here we are again. I have several things to report on the cancer treatment front, and some musings about ending one phase of the process while also looking ahead to the next.

First and most exciting to report is that I had my final chemo treatment last week. While it’s still going to be about another week or so until I’m fully recovered from the not-so-fun collection of chemo side effects (including spaciness and fatigue, both of which make it hard to blog), I must say that reaching the end of this chemo phase makes me super happy. To celebrate, I brought along some tiny bubble wands (with pink hearts on top!) and got my mom and Josh to blow them with me down in the Meditation Room (the overprotective nurses at the infusion center didn’t want me to blow them there—fine, be that way). Now I get to look forward to my hair and eyebrows growing back, which will hopefully start sometime in the next month or two. It’s not unreasonable to expect that by the end of summer I’ll have an actual hairstyle and can say goodbye to the crazy colored wig extravaganza. It’s been entertaining to be pink- and purple- and blue- and green-haired, but I’d way rather have my dark hair with sparkles back.

Now that the chemo phase is over, though, it’s time to turn my (and my team’s) attention back to the surgical phase of treatment. Therefore, the day after my last chemo treatment last week (while I was still feeling reasonably energetic from the steroids they gave me the day before), I went back to UCSF to meet with my breast surgeon, Dr. Ewing, and my plastic surgeon, Dr. Foster, and talk about next steps. When we had last left Our Heroine, these two docs had already successfully performed on me a lumpectomy and sentinel lymph node removal, along with a “nipple-saving” breast reduction, in preparation for the upcoming double mastectomy and reconstruction surgeries. We put those other surgeries on hold while I completed chemo, but now it was time to get that ball rolling again.

Also, I had had a chance to do some more thinking during the months of chemo about what kind of reconstruction (and ultimately, what kind of long-term outcome) I wanted, and had had a change of heart that I wanted to discuss with the surgeons. Basically there are two choices when it comes to reconstruction: you can reconstruct with implants, or you can reconstruct with your own tissue (there are several different ways to use your own tissue, but the most popular one these days is called a DIEP flap, which involves taking fat, tissue, and veins from your abdomen and moving them to your chest). Originally I had been planning on implants, because I didn’t like the idea of adding an additional surgical site or the more difficult recovery time involved in the donor-tissue option. But over the last month or so, prompted by a brief discussion last month with my medical oncologist where she urged me to think about the DIEP option, I did a lot of reading and thinking about final results and I changed my mind. What it basically came down to was me wanting to feel like at least my boobs would still be made of flesh (and more importantly, my own flesh) rather than plastic, so that there would still be a texture, warmth and jiggle that was familiar even if the rest of it was numb and different. But I also had some concerns, and wanted to make sure that I was a good candidate for the DIEP and find out how the process would change with this new direction. Would they be able to condense the two remaining surgeries into one, and do both the mastectomy and the DIEP reconstruction at the same time? Some of the people I’d read about had done just that, and while it would make for a long and major surgery, I liked the idea of fewer surgeries overall.

So all that being said, how’d the meeting go? First up was Dr. Ewing. She was really quick to remind me, in no uncertain terms, that just because I’d changed my mind about using donor tissue instead of implants for the reconstruction, that didn’t change the number of surgeries I would have. (Dang.) There would still be three total (two more to go), and the next one would still be as we had already planned, the “nipple saving” double mastectomy plus the placement of expanders (which would be partly filled up with sterile saline at the time of the surgery so at least I won’t wake up flat). She examined me, and seemed pleased with the way everything had healed up from the last surgery. She also said we could use the same scars to go back in for the mastectomy, so that’s good. Then we talked about when the first upcoming surgery date could be, and settled tentatively on April 26^th. She seemed totally fine with “only” a month off after chemo (Dr. Majure had been fine with this too when I asked her the day before). Then Dr. Foster came in, and Dr. Ewing left to talk to the desk folks about scheduling while we talked to him. He too examined me, said the scars looked good but that “we could clean them up some” (whatever that means). We talked some about the DIEP, although it turns out that it’s not him who does the DIEP surgeries, it’s his colleague Dr. Sbitany (who “went to an extra year of medical school just to learn how to do these kinds of surgeries”. Well okay then, he sounds like our man). I asked both Dr. Ewing and Dr. Foster about whether or not there would be any issue with all the radiation my skin had undergone 23 years ago, but they didn’t seem to think it was going to be an issue (though of course they, like everyone else, said the equivalent of “we won’t really know til we try”). Dr. Foster felt my abdomen too and said it seemed soft and not a problem, but added that we really didn’t have any data about the effects of abdominal radiation on abdominal surgical procedures like we do about radiation to the breasts and surgery (this is where it sort of sucks being the special snowflake 2-cancers person that I am). Dr. Foster was very patient with my scattered-brain, repetitive question asking, and reasonably reassuring also. He said that we’d be able to ask more questions later on after the second surgery, when I’d meet with Dr. Sbitany to discuss and finalize the third surgery. I am eager to set up that meeting but will likely wait until after the second one is over to do so, since there’s plenty of time in between.

So really the plan is the same as it’s ever been, with the three surgeries, but the difference is that instead of putting in implants for the third surgery, I have decided to make it more complicated in the short term in hopes of a better long term result (specifically, one I’m happier with) and use my own abdominal tissue instead of implants. That third surgery, with its two different surgical sites, will be the hardest to heal from, not the second one (though the second one will be no picnic). They guesstimate 6-8 weeks, with the first month or so being the hardest. I guess it’s sort of a silver lining that I’ll also wind up with a much flatter tummy in the long run, because of all the tissue that will be removed. What’s a little weird to me is that I’ll wind up with a totally resculpted top half, with smaller boobs and flatter tummy, but my bottom will still remain the same, with big jiggly thighs and butt. I will for sure be a pear, not an hourglass. I’ve been also joking that what I’ll look like when all is said and done is a centaur—with a svelte human top and a big horsey bottom. And yeah, a shit ton of scars. The abdominal one will be horizontal from hip to hip (making sort of a cross with the vertical one I already have from the abdominal surgery I had during the first cancer go-round), and there will also be one around my belly button. I’m not that fussy about smooth skin and I know from past experience that scars fade and get less noticeable, but yikes.

It’s taken me almost a week to get my head around all this information and my feelings about the whole thing, even though a lot of it was information I already knew. The truth is, all of this surgical stuff is still at least somewhat scary to me. I am confident that I can handle the pain part, and that I can hold my focus on the temporary nature of the restrictions in movement and ability that will be a part of the recovery—but there’s still definitely fear and anxiety going on inside me as this surgery stuff gets closer. What’s that about? Let me indulge in some “keeping it 100” navel-gazing for a minute (you know, while I still have an untouched navel.)

Well, for one thing, I’m sure I’m scared because I remember and am still somewhat traumatized by the first major abdominal surgery I ever had (the staging laparotomy/splenectomy from the Hodgkins Lymphoma). That was a hard experience both physically and mentally (it was my first experience of major debilitating pain and the restrictions that come with it, plus I woke up missing an organ and with a bunch of other stuff rearranged). The recovery from it took a long time, and I’m definitely not looking forward to doing that again. No matter how brave and optimistic I try to stay, there is still a part of me that wants to “just say no” and run away and hide so I won’t have to go through this. I am afraid of what it will do to my psyche and my sense of self and safety, when the sanctity of my body, my familiar fleshly container, is once again violated—repeatedly!—by outside forces, violently, painfully, and certainly without my full, enthusiastic consent. And that fear seems pretty reasonable, despite all the reassurances that after a period of transition, there will be a new normal, and eventually I will get so used to it that I won’t even think about what happened to me most of the time. 

For another thing, I’m scared and anxious because I am still struggling with the idea that my body is going to be so radically rearranged and modified, both from what it once was, and from what other humans have. My new boobs will feel like flesh, yes, but they will be just a weird sculpted facsimile of ideal boobs made out of belly fat, and not like the original complex, sensitive, imperfect milk-making structures that accompanied me for the last 35 years. Some days when I think about it deeply, the idea that we can just pull flesh from one place (or person) and put it in another seems wrong and horrible (I mean literally horror-inducing, like in a scary movie), like a perversion of the natural order and design of our embodied human experience.

There isn’t a lot I can do to calm these fears and anxieties down except to acknowledge them and try to give myself complementary or alternate narratives to focus on. For example, as a long time science-fiction fan, I am also trying to see if I can shift the narrative here to something more futuristic and change-positive: modified humans are cool! Look what we humans have learned to do to hack and improve the original design of our physical selves! We do not have to be not bound by our bodies, we can fix things that break and change what we want so that we can focus on our inner lives, on our passions and desires, on what gives life meaning. We are closer now to being able to do whatever we want or imagine, without the constraints of the flesh or the random genetic and environmental challenges that trip us up. Humanity is evolving, and this is one way we are doing it. All of humanity will eventually be modified in one way or another—heck, many of us already are, if you think about things like dental work or exercise programs. I’m just a frontrunner, ahead of my time (as an Aquarius, that kind of excites me).

So that’s where we’re at for now. Over the next few weeks I’m going to try to focus on healing up and strengthening my immune system with all the good self-care stuff, and to distract myself by making flags and setting up all my plans for Maker Faire and Wiscon, so that I can look forward to participating in those events once I’m done with the next surgery. Just keep swimming, just keep swimming...

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.

I don’t need any reassurances that this too shall pass and that things will get back to normal at some later date. I know that. I feel grateful that at least I was able to go to the Pantasia handpan gathering in Joshua Tree two weeks ago (and oh how I struggled and finagled and insisted on going to that. It was worth it, though). I also know there will be other rewards for me in the months to come even if I don’t know which ones or how many yet. But I’m still mad and disappointed and irritable about the ways in which my predictable, intentionally designed life has been made uncertain, uncomfortable and unpleasant. These disruptions (and this saga) can’t be over soon enough for me.

(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?