Blog (Irregular Reports From the Front)

Well well, it’s been a while, eh? Rest assured that the delay was not due to lack of things to report on, but as usual that there were too many distractions. Josh and I went on a trip to Ashland (yay Shakespeare!), the kids went back to school, and mostly what kept me away from the computer was the usual time-and-energy suck of getting ready for and then being at (and now recovering from) Burning Man. Anyway it is clearly time for some updates. Maybe not ALL the updates, as the title of this post seems to promise, but at least a bunch at once.

Patient Patient Update

So how has it been going for the patient patient, you might be wondering? Well, I’m happy to report that for the last few weeks I have no longer felt like a patient, (which is probably why I stopped updating so often). In fact, I am feeling pretty strong and healthy, all things considered, and almost entirely back to a normal-to-me level of activity. Actually, as of around mid-August (when I was approximately 6 weeks away from the reconstruction surgery), I was feeling like I was mostly recovered, at least as far as standing up straight and using/moving my body. (I was still dealing with somewhat lower energy levels, which mostly made me want to nap more often.) I went to a follow up visit with Dr. Sbitany on August 19^th where he basically told me that I looked great (from his “proud of my handiwork” point of view) and I could do whatever I wanted now with no more restrictions. He encouraged me to massage the scars and scar tissue and we talked about the final “clean-up” surgery (in which my areolas get made circular again and various lumps and bumps are addressed). That final surgery sounds like it will be relatively minor and not require a hospital stay or drains or a long recovery time or anything. (Whew!)  I have yet to schedule that surgery but am hoping it can be some time in early November (since I’ve already hit my deductible for this year).

In other cancer news, I also did some blood work and met with my oncologist about the final phase of treatment, hormone therapy. The blood work showed that I was well on my way towards menopause (thanks, chemo) but not quite fully there yet. That meant we had two options: 1) bring full menopause on now by shutting down my ovaries with monthly shots of an ovarian suppressor (oh boy) and put me on an aromatase inhibitor for the next 5 or so years (the aromatase inhibitors are considered slightly more effective at decreasing recurrence risk), or 2) let the menopause/ovarian shutdown process continue to happen naturally and go with tamoxifen for the first year (and then reevaluate). I’m all for letting things happen naturally and avoiding painful shots, so I chose the latter, with the support of my oncologist. I also made a pitch for not starting the tamoxifen (which is a daily pill regimen) until after I got back from Burning Man, which she grudgingly agreed to. I started the tamoxifen about a week ago and I am happy to report that so far the worst side effect seems to be moodiness/irritability (though part of that is probably also the usual post-burn re-entry feels...it’s kind of hard to tell the difference). I have also had some mild queasiness and I’ve felt some hot flashes at night, but they’re not too bad and I haven’t really experienced them during the day (yet). So at least for now, things seem to be tolerable and “new normal” seems to be well underway. Given that tomorrow is my one-year anniversary of diagnosis (though I will probably continue to mark the date not as September 14^th but as Rosh Hashanah, which changes slightly every year...this year it’s not until October 2^nd), it seems like I was successful in my goal to fit almost everything cancer treatment-related into a “year of living cancerously” (with the exception of this last fix-it surgery). That feels really good to me. I had to give cancer a whole precious year of my life, but now I am ready for it to recede into the background again, and am excited to go back to all the other identities and activities that I vastly prefer.

Speaking of which, that is a perfect segue into...

Burning Man Update

I have a lot of thoughts and a lot of the usual for-posterity recording of all the minutiae to do yet about Burning Man, but for the purposes of this particular blog entry, I want to focus on one of the big themes that is beginning to finally come into focus here, one week after getting back. Now, to be honest (and in keeping with this year’s theme of pursuing radical openness that I began at last year’s burn), I went in to Burning Man already anticipating this particular theme, which was that this year’s burn was going to represent a physical and emotional returning (a victory lap, if you will), a metaphorical as well as literal coming back to the happy place I was in before all this cancer mishegoss (that’s the Yiddish word for “crazy shit”) started happening. See, last year’s burn was fantastic (though you’ll have to take my word for it, because I never did the usual detailed journaling afterwards due to the aforementioned mishegoss...maybe someday) and I had a great time as usual playing and exploring and being my freest and most expressive true self. Then literally a week later, cancer hit me and sent me on what turned out to be a crazy rollercoaster ride of existential crisis, treatment and loss. A whole year’s worth of rollercoaster ride. But at least it was “only” a year...I was determined to make it so and I was lucky to have succeeded in that goal thanks to the support of my awesome healthcare practitioners and my amazing friends and family who supported me through the whole cancer saga. Returning to the burn again this year was the reward and the goal post that I was aiming for, the period (or maybe the exclamation point!) at the end of the sentence that started with “I was treated for breast cancer and then I got better.” So it represented more than just gratification through the usual playing and exploring and expressing. It felt like I’d made it through the valley of shadows back into the bright hot shiny light (or put another way, like someone had thrown a dark heavy cover over my usual supernova self a year ago, and that cover had finally been removed). Everything I did and everyone I spent time with in Black Rock City was overlaid with a sparkly patina of gratitude and savor. People would say to me “I’m so happy you made it back here this year, how are you feeling?” To which I could only reply, “I’m just so incredibly stoked to be here!” I was constantly reminded of how delicious and enjoyable it was (and what a contrast it was) to be in a place where I was not just allowed but encouraged to be doing what I wanted, when I wanted, with whom I wanted. My only restrictions were (as usual) the ones I placed on myself, not from anything that had happened to me. (I had especially been nervous that I wouldn’t have the physical stamina to do All The Things this year at the burn, but I totally did.) Returning to the burn after this year of living cancerously, in which I had had to give up and grieve so much, made it clear to me that, even though I had been through a shitstorm of difficult challenges, at the end of the storm I was still me (still Supernova!), and still able to participate as fully as I wanted to in this week of intense physical, emotional and I would even say spiritual activity. And that was deeply, profoundly satisfying.

Which is not to say that this returning was all emotionally easy. Anniversaries are hard, as anyone who has ever grieved something or someone will tell you. I had a huge pile of grief and loss and change to process from the year between burns, and I bore that burden throughout the burn until the night before we left, on Sunday when the Temple burned and took at least some of that pile with it. I spent a whole morning at the Temple on Wednesday (nearly halfway through the burn...I tried to go earlier but the Temple wasn’t finished yet) in an attempt to ritually bring closure to the past year. I placed the “my year of living cancerously” plaster bust art piece that I’d made in a spot that felt right and then sat a few yards away from it and cried and prayed and pondered and read and re-read the letter to myself that I’d written about this past year and my hopes for the future. (I re-read that letter during the Temple burn too.) I revisited the Temple on Saturday and checked in on my art piece and saw how it had been integrated into the beautiful dusty organic clutter of loss and remembrance that had sprouted all around it, and pondered some more about how even when we want to lay our burdens of grief and loss down and try to ritually close certain chapters of our lives, they never fully leave us. Some things break and are never completely fixed. Some things are never fully or even partially recoverable. But you let go what you can and embrace the rest, dusty and incomplete and complicated though they may be. And new things come to join the old, and they get integrated or they overshadow or they distract or they compliment or maybe all of those things.

When the Temple burned on Sunday night, I felt both there and not-there in the experience. On the one hand, it was just what I wanted: sacred and quiet, soothing and uplifting, with metaphorically perfect and beautiful ember clouds and smoke angels twisting and soaring away into the night and the company of thousands of fellow burners (including many of my own dear ones) processing their feels all around. On the other hand, I felt a little too hyper self-aware and therefore emotionally forced, like I’d already done the processing work I wanted to and that this part was rote ritual at best or indulgent at worst. (Maybe it was that I had anticipated this moment for so long, longed for it and waited for it, so that it was hard to just be in the moment and witness the chapter closing.) The truth is that, like much of life, this moment of watching the Temple burn was all the things, all at once, and had additional insights and repercussions that I didn’t fully appreciate at the time but which I know followed me out of the moment and are even now inserting themselves into the rest of my life. (And *that’s* why ritual is powerful and why we do it in the first place.)

There will be more reflections and reporting on (and pictures of!) this year’s Burning Man experience to come in future posts, but this feels like an appropriate place to stop for now. And let me just say in closing, with full cognizance of all the nuances of meaning which can possibly apply here, I’m still just so incredibly stoked to be here. I’m grateful and amazed and relieved and proud of myself. As I wrote on that plaster bust which, along with everything else, turned into glittering embers and drifted away to another realm:

I am so glad to be alive...I got this!

Patient patient update time again. I went back to UCSF today to see the plastic surgeon for a follow up. I finally got the last three drains out, which is a HUGE relief. The doc seemed very happy with how things turned out overall, and said that I should let things settle for another month and come back and see him again. He wasn't worried about any of the swelling or bruising or bumps and lumps and reassured me that everything looked great and we'd fix any and all issues with one last follow-up surgery in the fall sometime (which will not require any drains or even an overnight stay in the hospital). He also cleared me for lifting a little more, gentle stretching and raising my arms above my head (as long as it doesn't hurt me to do it), and said I could drive whenever it felt comfortable to twist and turn. I even specifically asked about handpan playing (which caused him to look up what a handpan was on his phone, and he seemed impressed) and he said it would be fine. The only thing he specifically told me to avoid for at least another month is "lifting heavy things", which in this case I think means anything heavier than a handpan. ;)

Time for a patient patient update. I’ve been laying low since getting home last week, and trying really hard to not. Do. Anything. (Besides sleep, eat, read, talk, look at Facebook, watch videos and lay about.) It’s harder than it sounds (hence the need for patience). I am trying to keep a good attitude about it and I have declared this the month of “Julax”, in which Julia relaxes throughout July. At least I have plenty of good books to catch up on and lots of lovely friends and family who come over to keep me entertained (which definitely helps the days go by). And every day I feel a little better and can do a little more. Slow and steady. Slow and steady.

[This was posted to Facebook while I was awaiting my official release after four days being in the hospital after my DIEP flap breast reconstruction surgery. I'm posting it here too for posterity.]

I am being a very patient patient but I am so so ready to go home. Hopefully that will happen later today once the docs do their rounds. (Yay Independence Day!) I've done a lot of resting and healing in the hospital, and every day is better than the one before. I won't lie, it's been boring as heck but at least it hasn't been too painful (yay pain meds). There certainly is a ways to go before I can even stand up straight or move around without shuffling, but the trajectory is heading in the right direction, and I'm very happy about that. I know I'm in for a good solid month of Julaxin' and truly keeping it slow and steady...and you all can feel free to keep reminding me of that!

Met with a new UCSF plastic surgeon yesterday, Dr. Hani Sbitany (which is a pretty awesome name in my opinion). He is the DIEP flap reconstruction specialist there. He was very nice and he and his colleague Dr. Z (also very nice, but unfortunately I'm forgetting her full name) answered lots of questions for me and were overall very reassuring. Looks like I do have enough belly tissue to donate in order to get me to a D cup when this is all over (which will look similar to what I had after the initial reduction I did back in November). 

They confirmed some things I did know (e.g. it will take about 6-8 weeks to recover, with the first 3-4 weeks the hardest and most restrictive due to the abdominal stuff, and there will likely be one more relatively minor surgery after this one to address any remaining adjustments) and told me some things I didn't know (e.g. it's a 12 hour surgery, the donor tissue will be placed on top of my pec muscles not under them like the expanders, there will be several new scars, and they'll be moving my belly button several inches down). Dr. Sbitany  didn't see any reason to wait any longer so we went ahead and scheduled the reconstruction surgery for June 30th. That's the timing I was hoping for (I want to be healed up in time for Burning Man at the end of August) so I'm happy about that. 

Now I just have to screw that battered courage of mine to the sticking place once again and remind myself that I'm a good healer and that the end results will be worth it. I know I can do this. Still grumpily and futilely wishing I didn't have to, though.

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.