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 19th 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 14th but as Rosh Hashanah, which changes slightly every year...this year it’s not until October 2nd), 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!