Blog (Irregular Reports From the Front)

Monday was a slow start. I was hoping to be able to go to the Temple and place my art piece and have my processing time, but the Temple wasn’t finished yet (there were quite a few things actually that weren’t finished by Monday, including the Man, whose head had broken off and they were struggling to fix, the Catacomb of Veils, various big theme camps, and probably a bunch of other things I didn’t see). So instead there was a fair amount of hanging around both in our little shade patio outside the yurt and out in the front of camp in the Pink Lounge. We had fun reconnecting with people we hadn’t seen in a long time (like Fink Purry and Aurora Gold, whose RV was next to us) and got to know some new-to-us Pinkies like the adorable Keith (who made the Love Trees art project across the playa from the Pink Lounge) and his wife Ali (later renamed Bliss), who were from the U.K., and Deron (an old friend of Halcyon’s and an amazing artist, who drew super cool sharpie “tattoos” on my arms).

We also got a chance to finally see Headspace, the amazing art car that one of our camp-mates (Mark) had built and brought to the playa this year (with a lot of help from a dedicated group of people, including our camp-mates Kathy and Anthony). They were still working on it when we first saw it, but we got a chance to get on it and look around and it was seriously gorgeous in every detail. I especially loved the metal sides with the “HS” logo cut out of them in a beautiful pattern, the gorgeous and comfy purple velvet cushions on the bottom level and the metal stairs that led to the upper deck with cut outs of the ten principles (at night these ten principles cutouts glowed with rainbow colors). Of course the face itself on the front of the car (which appeared to be white when viewed one side and black from the other, and was all lit up with changing color LEDs at night) was gorgeous and amazing too. Josh and I had contributed to the Kickstarter to help fund the car, and I was excited to see one of the “perks” of that contribution, which was supposed to be our names engraved on a copper plaque as “Headspace crew”. We found the plaque—but only Josh’s name was on it, not mine (probably because he was the one who actually sent in the contribution), which kind of bummed me out. He got a pink captain’s hat with the Headspace logo on it and some other schwag too, but at least we can share that.

Around lunchtime someone told us there was a camp right behind Pink Heart that was serving grilled cheese so Mom and I went to go get one. They were pretty delicious (as is any food someone else makes you in the desert) and even Mom, a diabetic, decided to treat herself to one.

Around 2 in the afternoon a big group of Pinkies gathered up to go take over a service shift at Arctica (the group that sells ice to the city). Like last year, Josh was a Slinger who hopped up in the ice truck and pushed ice from the back out to the front for people to grab and bring to the counter, and I’d once again signed up for a Greeter shift with Anjanette, so it was my job to welcome people to Arctica and make sure they knew what their ice options were in order to keep the line moving quickly. Even though it wasn’t in the formal job description, we felt was also our job to keep the people entertained and make even waiting in line into a true Burning Man experience. So we turned the enthusiasm and energy up to 11 and joked and played and teased with all comers, but with love since after all we were also representing Pink Heart. I especially had fun when there was no line—I would stop people as they approached the entrance and say “hey! C’mere! I wanna show you something! Wanna see something awesome?” and then I would gesture at the inside of the tent and say “Look! There’s no line...and you’re next! How often does that happen? Savor the moment! Enjoy!” (So really I was gifting them a moment of perspective.) I also joked around with the people in the front of the line by asking “are you ready? Are you focused and clear? Are you preparing to seize your moment as soon as it comes to you? Yeah? Ok, ready people cross the line!” (There was a literal bar—the bottom part of the dome—to step over as people came into Arctica, and drawing people’s attention to it helped them not to trip over it in their excitement.) That too was hopefully a gift, a humorous reminder of how our thoughts and intentions change our realities. Those few moments there were no people coming through to buy ice I’d chat with the other Pinkies and dance a little. It was a good long full three hours of playing with and talking to people and I was hoarse but happy afterwards. I got a few neat little playa gifts too. I love being able to meet and interact with (and gift enthusiasm and perspective-shifts to) such a wide and varied cross-section of burners...after all just about everyone has to come buy ice at some point. I would totally do another Arctica shift next time (though I am also attracted to doing a Center Camp coffee shift or even a Greeter or a Temple Guardian shift, for similar reasons).

When we returned triumphantly with our ice (and about $40/each in tips, which we contributed to the camp fund for buying ice), I was supposed to have a water bar shift but it turned out we were having a camp meeting instead. It was great to gather with all our camp-mates and introduce ourselves and get in the Pink Heart groove with Halcyon’s inspirational words. Lots of people (including Josh) got recognized for their over-and-above contributions to various bits of making camp go that year with rad pairs of glasses from Halcyon.

After camp meeting there was dinner and then that evening they pulled Headspace around to the front of camp right next to the Pink Swing and the Love Trees and the Tetrahedron and had a dance party there, which a bunch of us Pinkies enthusiastically checked out. The nice thing about having a party in your front yard is that you don’t have to schlep all your survival stuff with you and when you get tired, you can just go crash, which eventually, after much dancing and other fun shenanigans, I did.

[Da Vinci's Workshop Intro]

[Da Vinci's Workshop Part 2]

[Da Vinci's Workshop Part 3]

[Da Vinci's Workshop Part 4]

[Da Vinci's Workshop Part 5]

[Da Vinci's Workshop Part 6]

[Da Vinci's Workshop Part 7]

[Da Vinci's Workshop Part 8]

[Full Set of My Da Vinci's Workshop Pictures on Facebook]

Yay, it’s finally time for the Burning Man wrap-up and reflection. As usual I am writing this a few weeks after returning home, when the dust has mostly settled and/or been cleaned off most things, so some of the immediacy and detail has faded but some of the lessons and themes have finally clarified. I already sort of did a context-setting introduction last week when I talked about “returning” as one of the big themes that affected/came out of reflection upon this year’s burn, so I’m going to just jump right in to the day-by-day recounting here. As usual though, you are welcome to click here if you want to just skip to the end of all this detail and read the list of lessons and takeaways, and click here if all you want to do is look at the pretty pictures with captions. And if you are unfamiliar with Burning Man in general, you can go read some of my initial entries from 2011 in which I do lots of ‘splainin’, or click here to go to the official Burning Man web site which has more info and content and things to look at than you can possibly imagine. (But don’t get lost, come back here eventually!)

This year’s theme was Da Vinci’s Workshop, which provoked some thinking about Makers and making things (and was a nod to the Maker Movement). Normally I am all in when it comes to making things, and as previous years have shown I like to make big art pieces to bring, but with all my health distractions this year the only things I managed to make for Burning Man were a new pink scallop-coat and the plaster bust art piece I mentioned in the previous entry. Josh however had committed to making a big new infrastructure piece for our Pink Heart camp: a new modular metal water bar to replace our janky wooden one (one of Pink Heart’s major gifts is that we serve ice cold cucumber water 24/7 to thirsty citizens of Black Rock City). Unfortunately, given how difficult and distracting our pre-burn summer months were (with readying for and executing a month of summer camp and my undergoing and recovering from major reconstructive surgery in July, plus a few trips), the way that project came together was through Josh working heroically hard and mostly by himself (with some last-minute assistance from me) to get it done in the couple of weeks before the burn. Then he went up early on Thursday for build (with Anjanette, in a big U-haul that in addition to the water bar was also able to take a bunch of our other big items, thank goodness), to help put together both the water bar and Pink Heart camp. I stayed behind to finish all the packing and get kids situated for back-to-school and then Mom and I packed our stuff into our trusty minivan and drove up together on Saturday, with an overnight stop in Reno at the Grand Sierra Resort. 

Mom and I had reasonably smooth sailing out of the Bay Area and up to Reno, and arrived in Reno at the GSR around 7:30pm. It was a GIANT casino resort hotel, and a little overwhelming to us with a lot of activity, but we checked in and got our room and were able to chill out for a bit. We were hoping to meet up with another few Pink Hearters in Reno (Ari, a burgin from Israel whom we’d never met, and our friends Kathy and Anthony who were rolling in from Phoenix), and after a flurry of messages and phone calls we did manage to connect up. We decided to see Ari in the morning (our plan was to meet up with him and Kathy and Anthony for an absurdly early breakfast at around 4am and try to leave around 5am to caravan out to Black Rock City together, hoping to avoid the huge long wait to get in by arriving in the early hours) but we wound up managing to have a late dinner with Kathy and Anthony at the GSR. This was the first time we’d met Anthony, and he was a true delight just as we’d thought he would be. It was so fun talking and reconnecting with them that we didn’t get to bed until close to midnight.

The next morning we did in fact wake up at 4am and went blurrily down to the same restaurant we’d been in the night before to have breakfast...and that’s when Mom discovered that she didn’t have her daily medications with her. A bit of panic ensued while we half-unpacked and searched the car to see if they’d been packed with the rest of her stuff. Eventually we came to the conclusion that yes, they’d been left behind, and though Mom was a little freaked out, I assured her that there was a relatively simple solution: we could stop at a pharmacy there in Reno to get an emergency supply before heading out. It was like running into unexpected traffic: a bummer and a delay, but ultimately resolvable. It was our introduction to “burn time”, as Josh would put it (having suffered similar schedule setbacks in prior burns, we’d learned not to hold on to anticipatory timing too tightly.)

This incident also brought into focus something that would turn out to be a major theme of this year’s burn, exemplified by a quote that I’ve kept around for a long time: “Everything is going to be okay in the end. If it’s not okay, it’s not the end.” Which basically says to me that anything one experiences as uncomfortable or unhappy (or in this case, as an annoying delay) is going to pass, and things will eventually turn out to be okay. If you can just hold on to the idea that negative states of discomfort or upset are temporary, and focus on the fact that the default state of things is positive, it feels better in the moment—and it is surprising what you can endure while you are waiting for things to turn out okay. (Now that I’m typing this, I’m realizing that this theme has been with me through the entire cancer saga as well. It’s also closely related to Halcyon’s “crap or cone” story about where you choose to put your focus. But I digress.) That ability to hold negative things lightly worked for us that morning, and helped us feel better about the change in plans. Thank goodness we were still in a big city (and hadn’t driven straight on through and discovered this on playa and had to go through ingress twice), and that the pharmacy Mom uses (CVS) had a local branch nearby. The local CVS didn’t open until 8 though, so we had a few hours to kill. But at least we had each other and some friends to talk to. We met up with Ari (who turned out to be a delight as well), and then Kathy and Anthony joined us as well and we all sat around and talked with another burner sitting at a table next to us (John) while we finished breakfast.

At around 6am, Ari decided to go on ahead without us, but we waited around with Kathy and Anthony for a while (they had discovered a need to run their own errand there in Reno before leaving too) and then they left and we went over to CVS to be there when they opened at 8am. CVS as able to fill Mom’s prescriptions no problem, so by around 9am we were back on the road.

We stopped for gas at Love’s in Fernley (our traditional last-stop-before-BRC destination) and discovered that Kathy and Anthony were only about a half hour behind us, so we waited around there for them to come join us. (See, it all worked out okay.) We left Love’s at right around 10am and got on the road, which turned out to be incredibly smooth sailing (unlike last year) all the way to Gate Road into Black Rock City. Once we got into the Gate Line though, it took us about 5.5 hours to make it all the way in to the city and to Pink Heart. But it all worked out okay...at least we had Kathy and Anthony and all our enthusiastic arrival excitement to keep ourselves entertained (I wound up playing a lot of harmonica again...I don’t know why that has become an arrival tradition for me, but apparently it has), and we still made it to camp in the daylight to set up, which is what we’d wanted. (And just in time for dinner, too!) 

Arriving at camp was a great experience, even though we were still a bit discombobulated from our long journey. There were lots of Pinkies around and we were enthusiastically greeted and helped to unpack our van. Josh had already set up and prepared our yurt and outside shaded patio area, so we mostly just had to move stuff in and then help Mom stake and put up her tent and shade structure. Lots of Pinkies hugged me and looked me in the eyes and said how glad they were that I’d made it to the burn that year, that they’d been reading my posts and sending me love during the cancer saga. I just kept grinning and telling people “Yeah, I’m just so stoked to be here!”

We did some more set up, and then a bunch of camp-mates wanted to go out dancing so Josh and I changed into night-roaming clothes and went out with them. We headed over to 10:00 and stopped at Opulent Temple. They were not completely set up (no lights, no one else hanging about the dance floor) but they were playing music so we stopped for a bit and danced there. It was so awesome to just look around at all the happy Pinkie faces and it finally felt like we’d arrived at Burning Man. For a while it was just us Pinkies, but we attracted other passers-by and it made for a fun impromptu dance party.

Then there was some more wandering around, including a stop at Duck Pond, a dance camp I’d never heard of but others wanted to go find. We didn’t stick around Duck Pond long because the music wasn’t really grabbing us, plus I was getting really tired after a long travel day. So Josh offered to walk me back to Pink Heart, and for a while we walked with Tom and Viren. I had a great time talking deep philosophical concepts with Tom. He told me about a bunch of things he’d recently learned from various videos and lectures. One of them was something similar to the “we are all made of stardust” concept that I’d heard before, but even more specific about how supernovae create the universe and how we all have a little bit of supernova in us. Of course I liked that. And I liked Tom’s self-deprecating but enthusiastic charm—both he and Viren are such wonderful young men, with lives that are so different from mine yet connected so lovingly through the Pink Heart family (or PHamily as we like to call it) experience.

Which leads me to another them of this year’s burn for me: PHamily (and by extension, the families we choose). I spent a lot more time with camp mates and at camp this burn, and felt like I got closer to PHamily I had already known as well as made some heartfelt new connections. Which is not to say I got close to every single Pinkie or managed to spend enough time with each and every one of the bright souls in our camp to really feel connected, but the desire for and delight in connection was very strongly there all around. More on this later.

[Da Vinci's Workshop Part 1]

[Da Vinci's Workshop Part 2]

[Da Vinci's Workshop Part 3]

[Da Vinci's Workshop Part 4]

[Da Vinci's Workshop Part 5]

[Da Vinci's Workshop Part 6]

[Da Vinci's Workshop Part 7]

[Da Vinci's Workshop Part 8]

[Full Set of My Da Vinci's Workshop Pictures on Facebook]

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...