Blog (Irregular Reports From the Front)

Whoop whoop, I made it to the new normal. I’ve been putting off writing in here mostly out of general laziness, not because I have been unable.  In fact I am happy to say that I have been way more able than I feared I might be. I’m barely on pain meds (just 600mg of ibuprofen every 8 hours) and feeling pretty clear and sharp, albeit sore and tired (which is not surprising). But ok let me back up and tell the whole story, in as much detail as I can remember (for research! Because I am so totally going to use all this for the next novel.)

So Josh and I got up super early on Monday morning. I took a shower (with the special antibacterial Dial soap, which seemed a bit like magical thinking to me but I guess every little bit of knocking back the skin bacteria helps), got dressed (I wore my “breast cancer is a big fat doodiehead” tshirt that Susan Barnes gave me), said goodbye to the kids (Isaac was super anxious both the night before and the morning of, but he managed to hang in there), and when Mom got here at 6:30 we all packed our stuff in the Camry and drove to UCSF. We didn’t hit much traffic and got there well ahead of our recommended 7:30 check in time. We checked in at the surgery department and then they sent us over to the familiar 2nd Floor of the Cancer Center, where we waited around (checking FB, playing Words with Friends, and generally trying not to think about the future) for the staff to get there so we could start with the wire localization procedure.

Eventually a nice Russian technician (side note: lots of Russian immigrants who both work at and are served by UCSF...many staff with Russian accents, and signs in Russian too) took me back into the Radiology department (this was the department across the hall from the main Cancer Center, where I’d had my ultrasound) and got me all set up in a mammogram machine in preparation for the wire localization procedure. She was very warm and nice to me, apologizing for the squishing (and rightfully so; this one was way more painful than my previous mammograms had been) and patting me soothingly. There were two different doctors involved in the wire localization procedure, both very kind and professional young women in their late 20s/early 30s. It’s weird to be at that age and stage where the professionals are younger than me. What was cool though was that all the professionals there were women. I commented on that and they said something like “yeah, most of us here in the breast center are”. Yay for changing culture. Anyway, once they got enough pictures (ow), they shot me in the right boob with some lidocaine (ow) and then poked me with a wire (not ow, fortunately) and left it there and taped it down. I got dressed again and waited for them to tell me we were good to go and then we all headed back over to the surgery waiting room. Anji met us there.

We spent only a few minutes waiting around in that waiting room before they took me to a room to get prepped for the surgery. Mom, Josh and Anji all trooped into the prep room with me. I had to get completely undressed and remove all jewelry (luckily I had plenty of people to Sherpa all my stuff around, since I still had my overnight bag and my pillow and my purse and everything at that point) and then they gave me slipper socks and this weird paper gown with portholes in it to wear. I got to sit in a special chair with all sorts of medical devices around it and they gave me warm blankets (that part was nice). We soon found out that at least one thing the ports were for was to attach what looked like a vacuum tube, which blew warm air inside my paper gown and kept me quite cozy, if not actually somewhat sweaty. There was paperwork to sign. Dr. Foster came by and asked me again what size I was aiming for in the reconstruction (I said a C or a D if possible, in order to balance out the bottom of me, but that I trusted his judgment), then drew on my breasts and initialed my shoulders. Dr. Foster is a generally quiet guy without much chattiness but I still made him laugh some, which was reassuring. Dr. Ewing came by and initialed me too. She was much warmer, as is her way. Then Jason the cute young anesthesiologist assistant came by and explained what was going to happen and offered me a nifty new pain management technique, which was essentially a shot of something to each side of my chest that would block pain for 8-12 hours. There was science explaining involved but frankly I was too nervous and distracted to really listen so I don’t remember how it worked. I just know that it did, yay. I asked some questions because I always ask questions but other than “can I have my phone and headphones in the OR and will you advance the track for me?” (yes) I don’t remember what I specifically asked or what the doctors answered. Then another technician came by to give me a radioactive shot to the right breast for the sentinel lymph node detection. I was still somewhat numb there from the wire localization so it barely hurt.

Then it was go time. They put me in a wheelchair and wheeled me to what they called the “kissing corner” where Josh and Mom and Anji all solemnly hugged and kissed me goodbye. Then they wheeled me down the hall and into the OR. I don’t remember much about the OR itself except that it was super brightly lit and much bigger than I expected (I wonder if there were multiple surgeries able to go on in there simultaneously, though there were no other patients I could see already there when I got there. I think I was the first of the day though.) I met the anesthesiologist whose name I don’t remember and who I probably wouldn’t recognize if I saw him because he was already gowned and masked, but he was super nice and kind. I stepped up to and lay down on the table, which was actually nicely padded with a support under my knees and neck. I put my headphones on and started listening to my guided meditations and tried to relax as much as I could while everyone bustled around me. They put an oxygen mask on me. The anesthesiologist kept kindly patting my shoulder and telling me how great I was going to do. Then it was finally time to breathe deep and let go and sink down into the dizzy darkness until poof, everything disappeared.

I woke up feeling relatively calm and peaceful, though also super groggy. I had a weird discombobulated feeling of “but I just went to sleep! It’s over already? Where did all that time go?” There was a nurse there who said nice things that I don’t really remember, but boiled down to “it’s all over and you did great.” I was really dry in both nose and mouth. They gave me ice chips and eventually water and that was a huge relief. I switched my playlist to handpan music (Sylvain Paslier’s “Carousel” seemed nice and soothing), and kept drifting in and out of sleep. At some point they let Josh and Mom and Dad and Anji in to see me and I remember it was really hard staying awake. I had to push myself to stay alert enough to have a conversation, but was pleased with myself that I could. Eventually they all left to go have dinner and I snoozed out for a while.

At some further point they told me they were going to move me to my room, which they did. I think that was around 6:30pm or so. I still had an oxygen tube in my nose but I was feeling a little more alert and less sleepy. So once we got to the room and I was settled (which wasn’t hard) I was able to text everyone and tell them I was in my room (though I mistakenly said “recovery” instead of room so apparently I confused them somewhat. Ooops.) When they came back they had brought me macaroni and cheese, which I was able to eat a little bit of. I was feeling much better but still kind of spacy, not just from the anesthetic but also I think from having fasted all day, so the mac and cheese was helpful even though I could only eat a couple of bites at first.

I was feeling well enough to chat and hear about how the day had been for everyone and to trip out a little on my bandaged up, much shrunken chest. I checked Facebook and enjoyed all the nice messages people had left for me. I called the kids, and I think they were relieved to hear me sounding so relatively normal. Eventually Dad left, and then around 8 Josh was getting kind of antsy so he left too. Anji stayed a bit longer and then she left and it was just Mom and me. We chatted a bunch with each other (as is our way) and ate some of the fruit salad mom had brought with her (I felt better after that). We also talked to the nurses who occasionally came to check on me. I was doing pretty well so eventually they took me off the IV and the only thing I had going on was these trippy compression wraps on my calves, which were plugged in to a machine at the end of the bed and which would hum and squeeze alternating legs every few minutes (I think this was to prevent blood clots or something). It was actually a kind of soothing massage, I didn’t mind it. And the noise was kind of a white noise so I didn’t mind that either. They helped us set up the guest bed for mom and eventually we got some sleep (though like with any hospital experience, there were several wakeups so it wasn’t super restful.) But they mostly left us alone between approximately midnight and 5, so we did get some sleep.

Side note: all the nurses (like all the UCSF staff we encountered, actually) were super nice and warm, we liked them all a lot. Especially memorable were Michelle the night nurse, a funny middle-aged black lady who made Matrix jokes about red pill or blue pill with me (my antibiotic was blue, the stool softener was red), and Chris, the kind, bushy-bearded, tatted-up white guy morning nurse who seemed oh so SF. Overall I have to give UCSF pretty high marks for a hospital experience...it couldn’t have gone any better than it did, in my opinion.

Tuesday morning we had a visit from Dr. Foster’s nurse around 7:30 and after that it was too hard to sleep so we kind of got up and got dressed and ordered breakfast (it being SF, it was actually relatively healthy and relatively tasty food...organic yogurt and oatmeal, cage free eggs, Peet’s coffee). Mom went down to the gift store and got me a size A-B sports bra (we were thinking that the one I brought with me, which was size C-D, might be too big) and a special “roo” camisole that hade pockets in the front to hold the drains. Dr. Ewing came by at some point to tell us that everything went great, and that the lymph nodes looked good from the outside but of course we had to wait for the pathology report to tell anything else. She also told me “I know now why you had that big hematoma after your biopsy...the tumor had a bunch of blood vessels all leading to it”. Not too surprising, but made me all the more glad that the tumor was out.

Anji came by again at some point in the morning. Her friend Tammy was having surgery that morning too, but as we discovered, it was at a different UCSF campus so she eventually took off to go there. She brought me some Velcro and yarn to use with the drains if I wanted and a cute plushy pink stuffed animal. Rabbi Lezak came by too, which was really great and I was happy to see him. I love that he always asks me “how’s your neshama (soul)?” We had an interesting little chat about the spiritual power of letting other people give to you. Josh didn’t get there until around 10:30, but when he did, Nurse Chris showed him how to strip the drains for me and explained all the discharge things, gave us some paperwork and then released us into the world again. I was walking fine but feeling very tender.

We drove home on a beautiful sunny San Francisco day and I felt really happy to be going home.

Ok this is it, the night before surgery, the last night of “normal” before everything starts to change. On the one hand, I’m as prepared and loved up as I think I possibly can be, and I know that I’m in the best of hands and that everything will go fine. I’m brave and I’m healthy and I’m going to keep it rock steady. On the other hand, I’m nervous and scared and feeling a bit overwhelmed from all the attention. I feel like there’s more rowducking I could have/should have done, but it’s too late now. I have to just let go and be here now.

It’s been an emotionally weird weekend, to be honest. I tried to keep myself busy (Dickens rehearsal all day yesterday and a show at Marin Theater Company last night, then a Rodef Board meeting most of the day today) but I also had a hard time being totally present. People are sad and concerned around me. They want to mark or at least acknowledge the upcoming transition somehow. They want to give me blessings, words of support, advice, food, and hugs. I said on Facebook yesterday that I’m having a mixed feelings about all the goodbye hugs I’ve been getting, and what I mean by that is that while I love the hugs and appreciate the tremendous amount of support I’m getting from people, it’s also weird to be thinking about the fact that my hugs are going to permanently change after tomorrow. First off I won’t even be able to hug for a while until things heal sufficiently, but even after that, hugs just won’t be the same with a) smaller and then b) artificial boobs. So just like every shower was a grieving before (because every time I would get in the shower I’d be very conscious of my soon-to-be-changed boobs and skin), every hug is a grieving too right now.

Friday was also a day of mixed feelings. In the morning I drove Isaac and 5 other kids from his class on a field trip to the Legion of Honor, and it was gorgeous weather in the city and I was feeling pretty good. But then later that afternoon I drove back in to the city to go do a pre-op mammogram at UCSF (they’d only told me I had to do this on Thursday afternoon, and it was kind of annoying having to rearrange my whole schedule to accommodate, but right now if my care team says jump I say how high). That was unexpectedly hard because while waiting around between scans for the technician to read the images and make sure they were okay, I looked over her shoulder to see the images and there in quite vivid black and white, I could see my tumor. I don’t think I’ve seen it before. It was a very obvious small white spot in a field of darkness, with the little metal clip left behind from the biopsy in a clear line right next to it. Seeing that made everything feel real and scary in a way that it hadn’t felt before that. It’s hard to explain. It’s like I suddenly had to come to terms with the fact that this whole new cancer experience was truly happening, and grieving the final loss of possibility that maybe, just maybe, this was all just a bad dream after all (since I feel normal and healthy and I never felt a lump and didn’t have any other sensation that anything was actually wrong, so I was just taking the doctors’ words for it that there was really cancer there).

Tonight hasn’t been quite as restful or peaceful as I wanted it to be. People are visiting and calling and texting and I didn’t get the puttering time I was hoping for. The kids were upset and acting out, and to be honest so was Josh. I want to let go and indulge my own fears or desires for pampering but I find myself still taking care of other people.

Ok I think I am tired and not making as much sense as I’d like to, so I’m going to stop with this and try to wind down towards bed. It’s a super early call time tomorrow (I have to be at UCSF at 7:30am, which means leaving here at 6:30). I’m going to go listen to my pre-op guided meditation thingies and relax and try to get some good sleep. I know I’ll be up early anyway just from anxiety, so might as well get an early start on the sleep.

Bye blog. Catch you on the “new normal” side.

It’s been a while since I had a cancer update post so I thought I’d throw one out there for those who are following along with my cancer saga (I prefer thinking of this whole experience as a saga, because that way it sounds more like something to be enjoyed as a singalong around a roaring fire while drinking mead, and that sounds WAY better than mere reporting).

This last week or so has been all about staying positive and doing things I *can* control while waiting for the surgery date to finally arrive. I helped Josh figure out all the logistics we will need help with next week and put tasks on the Lotsa Helping Hands calendar for people to volunteer for. I filed receipts and paid bills and made “to do” lists for later when I feel better. I bought a sports bra (this is a weird concept to someone who has never owned one), sheepskin seatbelt pads, new super comfy lounge pajamas, and new sheets and comforter for our bed. I’m making piles of books to read. I have yet to go get a flu shot, but that’s on my agenda. I also still need to put together my OR and recovery play list (guided meditations, handpan music, reassuring affirmations) and pack my hospital go bag (with everything I want for comfort and reassurance in the hospital). In general I am trying to do things that make me happy so I can bank them up for remembering fondly during the dark days.

Last Thursday I went in to UCSF for a pre-op appointment with Sarah Goldin, the surgery nurse. She was very nice (like all the other UCSF staff so far) and gave us lots of info and answered lots of questions very patiently for us. I got given another big binder with pre-organized sections full of info and resources (very similar to the green expanding folder they gave me at the Marin Breast Health Center), which made me realize that I think UCSF does their “orientation” later in the treatment process than the Marin folks do, and that if they’d done some of this stuff earlier it wouldn’t have felt so bad having to wait around with no info and no patient navigator type person to talk to. (I actually asked Sarah about patient navigators at UCSF and she told me they’d just hired one and were orienting her that very day, and promised to have the navigator call me. Huh. That’s right, I am a powerful manifester.)

I learned a lot of specifics from Sarah that were helpful and reduced anxiety, but I also learned a lot of specifics that were new indignities to process or new potential complications to worry about. Here’s a few specifics in no particular order, which I’m writing down both to process for myself and to inform for those who are interested.

The surgery itself will begin at 10:45 on Monday morning, 11/16, and should last about 4-5 hours. Before that, though, I must report to UCSF at 7:30am (I’m hoping this is before rush hour gets too bad) so that they can do a wire localization procedure, which basically means they do one more mammogram to look for the little clip that was left inside my breast during the original biopsy, then insert a hair-thin, flexible wire into my breast and hopefully right next to/into the tumor itself, then tape this down and leave it there as a marker for what to take out during the lumpectomy portion of the surgery. The tumor and surrounding “margin” of flesh will be taken out and biopsied again as well. Sarah told me that the remaining bits of tumor will be preserved at UCSF’s tumor bank for at least three years, both for general research purposes and in case it ever becomes relevant to my particular cancer treatment in the future. (E.g. if they come up with some new experimental chemo drug and want to try it on a tumor like mine, either for my benefit or someone else’s.) I had another trippy moment of imagining what that tissue bank is like: what it looks like, how people move through and in and out of that space, and what the process is of getting tissue samples there, moving them around, destroying them when they’re no longer relevant, etc. I am both amazed and a little squicked that a thing like a “tissue bank” even exists.

Anyway. More details. Also before surgery officially starts, they will give me a shot of lidocaine to the breast and then a shot of blue contrast dye into the ducts which will work its way to the “sentinel” lymph nodes closest to the tumor and turn them blue. Dr. Ewing will be removing anywhere from one to six (that’s a higher number than I originally anticipated) blue lymph nodes and sending them off for biopsy. I won’t get the results of the pathology report telling me about both the tumor and the lymph nodes until about 10 days after my surgery, when I go in for my post-op appointment on 11/25. I certainly will be anxious to get that info, since it’s really the last big chunk of diagnostic data that will determine whether or not (or how aggressively) I undergo chemo treatments. But once again, I’m going to have to practice patience and wait a while before I know.

We also talked about the biggest potential side effect that can develop after any sort of messing with lymph nodes: lymphedema, a condition that occurs sometimes when your lymph system isn’t working properly to drain away fluids from the extremities (in this case, my right arm would be at risk for swelling and puffiness, sometimes temporary but sometimes permanent). Because of my earlier history of lymphoma, I asked if I were at higher risk for lymphedema (yes) and whether there was anything I could do to lower the risk of it happening or at least mitigate the symptoms (lower, no; mitigate, probably. Massage is good, and there’s a 5-week class Sarah wanted to refer me to about managing lymphedema).

Along the same lines, we also talked about post-op instructions a bit (there will be more lecturing coming I’m sure). I can go home the next day as long as my pain is controlled and I have been able to eat and drink without issues. I will very likely be sent home with drains still in, which they will show me how to measure and empty for as long as needed. I will need heavy duty pain meds (percoset and the like) until I don’t, but likely for at least a few days to a week. I will not be able to drive while on those meds (or while the drains are still in). I need to be aware of infection symptoms (apparently fever can sometimes be masked by the pain meds so I need to be aware of more than just temperature). I should not raise my arms above my head for a while. I should not lift anything more than 5-10 lbs (hello, handpan that weighs 15 pounds) for a while. I should not smoke for a month. I will not be able to bathe or immerse myself in water until the wounds have fully healed (probably several weeks to a month). I should resume walking as soon as possible but take it easy on all other kinds of exercise until given the green light. I should have a diet high in protein (for wound healing) and fiber (because pain meds constipate), and drink lots of water. There’s a lot to think about. And this is just the first of three surgeries.

Yesterday I had a conversation over the phone with the anesthesiology assistant. Mostly she just asked me standard questions about my medical and surgical history, and told me a few more details about how to prep for surgery. (For example, I learned something new today: that the morning before surgery I should be washing myself with antibacterial soap in the shower. Good to know.) I warned her that I have in the past had asthma issues, though I don’t currently. She reiterated the general schedule and what not to do before and after.

But how am I feeling about all this? Good question. Overall okay, I guess. I won’t lie, I’m still often anxious about the future and feeling a little bit like I have a giant black raincloud hanging over my head and following me around, but I’m managing to keep my equilibrium pretty well. I’ve had enough time to process the general fear of surgery that I had left over from the Hodgkin’s experience and have come to realize that really what I’m wrestling with is this sense of impending transition, and the anxiety of being forced to cross the divide between “normal” and “new normal”. Since I was pretty satisfied with my current state of “normal” and I don’t know what “new normal” will be, it’s hard to keep optimistic about it. I am still keenly aware every single day of the fleeting days remaining for my big soft warm squishy tender boobies, and still practicing saying “so long and thanks for all the good times” to them. I am also quite aware these days of how wonderful a thing it is to be safely enclosed in this strong protective envelope of skin and dreading what may come once that envelope is cut open and rearranged. On the other hand, I’m also more aware now of the general discomforts of big floppy boobs and beginning to look forward to what it will feel like for my neck and shoulders to not be dragging this extra 20 pounds around on my chest. I’m thinking about how my t-shirts will fit differently and how I’ll finally have more options in the bra department.

So I’m hanging in there. What else can I do? I’m taking care of myself and others, I’m living my life as “normal” as I can until I can’t, and then when it’s time I’ll adjust.  That’s what it is to live, right?

Whew, whatta weekend I just had. Lots of Halloween party action plus the start of Dickens Fair workshops is making me one tired girl this Monday morning.

Friday night Anji and Aimee and I went out to Ghost Ship in San Francisco like we’ve done for the last few years. We started late (we had planned to meet Aimee at 9:30pm but didn’t actually leave the house until a little after 11pm), for a variety of reasons. I got to Anji’s house to get ready a little late, but instead of jumping right in to dressing and makeup we spent some time processing some feels. Plus Aimee was late (didn’t get there til around 10:30) which didn’t help. But eventually we got it all together, and I must say we looked quite fabulous. I was especially pleased with my purplicious burlesque clown costume this year, I think I looked awesome and it certainly was quite a fine last show for the beautiful big boobies. I do wish I had taken more pictures but I’ll just have to make do with what I got.

Once we were on our way into the city Friday night’s adventure got off to a somewhat rocky start but we recovered like the professional partygoers we are and then caught the shuttle over to Ghost Ship. We got there around 1am as everyone else was starting to leave. But we did enjoy ourselves a lot once we got there, mostly wandering around outside and checking out the art and enjoying interacting with the other people in their costumes, so it was a story with a happy ending. I got tons of compliments from people about how awesome I looked, which really made me happy (because I *did* look awesome, as mentioned above). Anji and I got to ride on the Ferris Wheel, which was fun. We stayed until right around closing at 4am and then caught the shuttle back and drove over to Mel’s to have our traditional milkshakes. We got home around 6am and I managed to strip down and take a shower before it got light out and then nap for an hour or so before I had to get up again to take Eli and his friends Everett and Joe to Dickens workshops. I actually felt better than I thought I was going to, considering the lack of sleep, although I did start to fall asleep in our final lecture workshop of the day. (Luckily the boys were in a different class than me.)

It was actually pretty fun to be at Dickens workshops, to see some old friends and get some sympathy hugs, and to introduce Eli’s friends to the whole world of Dickens. I think the boys had a great time overall. We went to the morning meeting, and then I went to the Dark Garden workshop even though I’m still unsure whether or not I’ll be able to model there this year. I did go up afterwards and explain my situation to Caroline the new model wrangler and ask if I could borrow an underbust corset or waist cincher and she said to come on by during dress rehearsal so she could measure me and see what they could do. So I’m going to put in my form and hope that we can work something out for maybe the 4th or 5th weekend. I really do enjoy that gig and want to do it again if I can. (And fuck you, cancer!)

Saturday we got home from workshops around 4 and I immediately went to bed for a few hours because I was so exhausted. I got up around 6 though and rallied for dinner and trick or treating with Isaac and a few of his buddies. Isaac reprised his cat onesie costume again this year and I had a fabulous pink unicorn fleece onesie and unicorn Chuck Taylors that Anji got for me so our costume stuff was super easy (and pretty cute if I do say so myself). We met up with friends and had a nice time walking around Quietwood with all the other families. It was pretty crowded but overall friendly and the kids were happy with their candy haul (I was happy about the house that was handing out wine and coffee to the parents...that cup of coffee was perfectly timed.) We got home around 8:30 and I left Isaac to sort and gorge on candy while I got dressed again in my purplicious outfit.

Anji came to pick me up around 10 and we drove back into the city to go to Phantasm at the Armory. It took us forever to figure out parking but we finally found a garage a few blocks away and then walked over to the Armory only to discover that the line to get in was super duper long. So we just rolled with it and had fun talking to people in line. We probably got into the party around 12:30 or so and had a pretty good time (the music was awesome and we finally did get a chance to do some good dance time) until we had to leave around 1:30 (it was daylight savings so that was actually two hours later) to go pick up our car before the garage closed. I again got lots of great compliments on how awesome I looked, and that was pretty cool. I enjoyed dancing with my flowtoys, although it got more and more hot and crowded. I got all sweaty and there was a point right before we decided to leave where I started feeling faint, so I’m glad we quit when we did. On the walk back to the car we got lots of attention from random revelers for how beautifully boobalicious we were (and wow, we really were), and joked about how next year we should just skip the party and go wander around the streets of the Mission looking at cool costumes and having random complimentary street encounters. It was a short outing but still very fun and I am glad we did it. I liked being able to wear my fabulous costume twice and I did enjoy the dance time, even if it was somewhat brief.

My mom and I went to UCSF yesterday to meet with Liane Abrams, the genetic counselor, and get the results of the blood test I did last month. Much to my relief, 48 of the 49 different genes they tested came back as negative for any mutation (that’s including the BRCA-1 and BRCA-2 genes I was tested for last year), and the one that didn’t come back negative came back as a “variant of unknown significance” (which is a great phrase and totally my next band name). That variant one is PMS2, in case any geneticists want to know, and is apparently something that shows up in 1% of the Ashkenazic Jewish population. Liane didn’t seem to think the variation was any big deal at all in my case, and assured us that it certainly wouldn’t change my treatment plans in any way. So that was a big sigh of relief.

Weirdly enough, that meeting with Liane was kind of fun. She’s a nice Jewish lady with a New York accent and we felt very at home with her. She taught us some science (she’s clearly an experienced researcher and a great teacher) and we laughed a lot. She also took the time again to ask us about my treatment plan, and about how we each were feeling and how Josh and the boys were doing, and seemed genuinely and humanly concerned. She even asked me to email her to let her know my surgery date, I think she might be intending to come visit, which is very sweet.

On the way out we stopped by the main desk and got to meet Grissel (Dr. Ewing’s practice assistant and the one I’ve been going back and forth with about my surgery date), which was good. She was very nice in person and apologized profusely for the delays and the confusions in the scheduling process. I think having a human interaction face-to-face was helpful in making us each more sympathetic to the other, and we were able to confirm for sure that the surgery date will be 11/16, which removed the last bits of lingering uncertainty. She said she’d be letting us know about pre-op appointments as soon as possible, and would be sending us more info about what to expect and how to prepare as well (even though I have a lot of that already from Dr. Foster).

I also found out that there is really no such thing as a patient navigator at UCSF, which is too bad. Given my experiences with Grissel and trying to get a surgery date and all the institutional delays I’ve experienced, I think they really would benefit from a program like that. I am going to try to contact their Patient Relations Department to suggest such a thing.

Ok, so now it is time to focus on preparing for the 11/16 surgery date and the recovery thereafter. It feels good to finally have forward movement in this treatment process and I am going to turn my considerable manifestation powers to bringing forth a smooth, easy surgery and healing process with no complications and a biopsy that shows clean lymph nodes. Lymph Lady*, come to my rescue!

*That was the name of the superpowered alter ego that I created for myself the first time I went through cancer. I figure she’s still there somewhere in her secret hideout, just awaiting the call...ready to spring into action and battle cancer once again!

Just got home from my first official handpan gig, doing some meditation and sound healing for Eileen Barker's Path to Forgiveness retreat attendees at Mount Madonna Center in Watsonville. It was both fun and satisfying to be a handpan ambassador and an honor to be of service to other people on their healing journeys. I would definitely do that again!

This waiting bullshit sucks. I’m living 24/7 (yes, even in my dreams) in a weird, cognitively dissonant, limbo space of non-specific threat, and it is exhausting and I hate it. I realize I just have to accept that this is a time to “be” and not to “do”, but the “being” is uncomfortable (not that surgery is going to be any more comfortable).

Speaking of which, I still don’t have a first surgery date nailed down. I spoke yesterday with Grissel, the new practice coordinator for Dr. Ewing the breast surgeon, and she said she’s still waiting to get an official order for surgery in the system from the doctor. I have no idea why it is taking so long to get that order in (*grumble grumble bureaucracy grumble*). Meanwhile time is ticking away and I’m getting more and more anxious. I pushed Grissel to give me some possible dates, and she said how about 11/9, and I said “really, can’t it be any earlier?” and she said she’d try to find out about the possibility of 11/4, but that she’d have to email Dr. Ewing and Miriam (Dr. Foster’s assistant, who has to coordinate with her) and get back to me. I had to just say okay, let me know as soon as you know, even though I just wanted to scream and yell at her "don't you know how this FEELS?"

I so want to get this treatment journey started and this first surgery over with. I’ve spent almost 6 weeks living with this cancer diagnosis and 3 weeks constantly contemplating the difficult physical and emotional challenge of losing vital, identity-central pieces of my body. I’m a fighter and I’m ready to get in there and overcome this challenge with optimistic Supernova style and grace and with my super sharpened weapons of mental/emotional/physical preparation, but this fatiguing waiting is going to make me drop my weapons if it doesn’t end soon. Yet I’m afraid to put all my carefully prepped weaponry down and rest, because I could be called to the fight at any moment. Can’t fight, can’t rest, can’t do anything but distract myself and hope things start moving again soon...this sucks. I feel stalled out and stuck and unable to grow or heal from this trauma. I hate how everything else in my life has to be put on hold while this uncertainty resolves itself.

To use yet another completely different metaphor, it’s like cowering in a basement waiting for a tornado to finally touch down. Doesn’t matter that I’m well prepared with all the survival supplies and that all my people are here around me...there’s still that fear that anything could happen and the relative surety that the most likely result is going to be messy broken things. I just want to find out about and then get busy with whatever rebuilding and clean up has to happen.

So on Wednesday I met with the plastic surgeon at UCSF, Dr. Foster (and his resident, a nice young woman whose name I’ve already totally spaced). My ultimate takeaway from the meeting was positive, though yes, there were more details that rocked me and which I am currently trying to absorb (more on that in a minute). I liked Dr. Foster, he seemed steady and warm and explained things really well and respectfully. I have accepted that my cancer care is pretty much going to all be through UCSF and I am generally happy about that, despite the commuting hassles that will invariably ensue. I do feel good about the high quality of the institution, and the qualifications of the team are nothing but stellar. My interactions with staff and all my experiences at UCSF have all been about as positive as they can be, considering.

Anyway, we agreed to and reiterated the “save the nipples” plan of 3 separate surgeries that Dr. Ewing had proposed to me before. They drew me pictures and explained the anatomical and procedural details of where and why and how they cut and sewed where they do and what I might expect in terms of scarring, and showed me photos of what other people have looked like afterwards. (The photos were actually more reassuring than I thought they might be.) We talked about recovery from each surgery and about the timeline as a whole, which turns out might be shorter than I originally thought (Dr. Foster seemed to think that it would only be about 3 months between the first two surgeries rather than 6 months, which makes the whole timeline shorter—and I’m glad about that.)

Now, let me back up and go more into the details, because writing them down helps me absorb and process. And I have to keep absorbing and processing, keep moving these things through to make room for the next batch which I’m sure will be coming soon. Gotta pace myself...

So one of the more disturbing clarifications that seems to be emerging is the way in which my previous radiation treatments are or might be possibly continuing to effect this whole treatment process. Dr. Foster brought up the possibility that there might be changes in my skin and underlying muscle and flesh that could cause issues with healing (e.g. more fragile skin, slower wound healing, more liquid produced post-surgery that will need additional drainage, possibly a greater risk of capsular contracture or lymphedema, etc). Hearing this was disturbing for a couple of reasons. First, it exacerbates the unhappy “gotcha” feeling that I already had going on after finding out that the previous treatments were likely a contributor to this current cancer, and therefore also were a major contributor to my decision to go the more extreme double mastectomy treatment route instead of “mere” lumpectomy. (F*cking radiation: the glow-in-the-dark gift that keeps on giving.) Second, it becomes yet another chaos factor, by which I mean it’s another thing that is essentially an uncontrollable unknown—I won’t know if there will be complications in healing or what they might be until they do or don’t happen, but I have to hold on to the possibility that they could erupt at any time (even apparently decades afterwards, as experience has recently shown.) Chaos is uncomfortable and emotionally fatiguing to live with in the best of times, and this is not the best of times.

Another bit of disturbing info that came out during this consult was the clarification that silicone implants, while much safer and better understood now then they used to be, are not designed to last long term. So if I go that route (which is what I was leaning towards, because I don’t love the idea of having to take “donor” tissue from my stomach, back or butt to make new boobs out of), I am also likely looking at another couple of surgeries every 15-20 years during my (hopefully long) lifetime in order to replace the implants with new ones. (Reconstruction: also apparently the gift that keeps on giving.)

One final bit of disturbing info was finding out that the process of expander insertion (this is when they put in temporary “stretcher” implants and slowly inflate them with saline over a course of weeks and months until I have reached the desired size and shape) involves detaching my pectoral muscles and putting the implants *under* the muscle. For whatever reason, it just didn’t occur to me that there would be muscle manipulation (and therefore add to potential recovery and physical therapy issues afterwards). The process also involves supporting the implants with a sort of hammock of something called “alloderm”, which is something made of stripped and sterilized sheets of human dermis. That’s right, ladies and gentlemen: alloderm comes from cadaver tissue donations. So I’ll also be dealing with the reality that I have bits of dead people sewn inside me along with artificial silicone implants. confused_rev emoticon On the one hand, yay science; the fact that this is even possible is pretty amazing. On the other hand...that’s kind of creepy. Actually, really creepy, if I think about it long enough. Bad enough to have to adjust to the idea of being some sort of bionic cyborg being once this process is through; but also to be frankensteined? (Bet you didn't ever consider that a verb, did you? Well now you can.) Weeeeeiiiird.

Anyway, the next step in the treatment plan here is scheduling the first surgery (the reduction and lumpectomy + lymph node biopsy), which hopefully will still be the first week of November if we can swing it, schedule-wise. Both Dr. Foster and Dr. Ewing seemed to think that would be no problem, but I have to talk to the actual admin in charge of such things before I will know for sure. (I’m anxiously awaiting a call from UCSF to nail down an actual date.) Hopefully it will entail only one overnight in the hospital and then about a two week recovery time until I can start returning to basic activities like driving and picking up weighty things, then another “take it easy” couple of weeks after that. Then theoretically if all goes well and there are no additional complications or additional treatments (e.g. chemo) that would require waiting, I could have the next surgery with the full mastectomy and stretcher implants as early as February (but which I will likely want to put off until March if I can because of other pre-existing plans.)

So now for the feels. How does all this feel? Thanks for asking. I go up and down, but frankly, it’s been really sad, surreal and difficult to hold. I’ve been walking around since this last doctor visit with a heavy sense of dread and anxiety, which causes me to mope around and burst into tears from time to time. Processing by talking to people and writing this stuff on Facebook helps, but really it just takes time to integrate (and grieve) everything that’s coming at me.

I think the thing that’s bothering me most here is the discombobulation that comes from having to continually adjust my expectations or assumptions about what will come at me and what additional things I’ll have to screw my courage to the sticking point and deal with. It’s been like this long slow avalanche down into despair—I keep hoping it’s stopped and I’m done, but then just as I’m wiping my brow and catching my breath I get hit with a few more rocks and pebbles, and then a few more, and then a few more, and then I slide a few more feet downslope and have to recover and clamber back up again only to get knocked down by a few more unexpected rocks. Just when I think I’m regaining emotional equilibrium...bam, another thing to integrate and accept comes along. Ouch, and also argh! It’s not that each new bit of information or detail about treatment is in and of itself so scary or bad, it’s that the constant barrage of things to accept and deal with becomes its own kind of torture, like the death of a thousand cuts.

So far I’m still keeping on keeping on and I think I’m doing pretty well with all this, but dayum! This is hard work (and tough to verbalize, though I’m trying). And it’s just going to keep going and get harder over the next 6-8 months before it finally dies down somewhat. Anticipating and bracing myself for what is to come without fully knowing what it will really be like is hard too. I don’t want to fear all the things but I can’t deny them completely...I have to remain open to the possibility of things going negatively or problematically, but not dwell on it. I have to keep my eyes on the prize, which is living. It won’t be the same living as it used to be, but it’ll be mine, and in the end it’ll be fine however it is, because I will make it so.

Today was another one of those bad news/good news days. Bad news: the request I made to Anthem Blue Cross to consider the plastic surgeon I was referred to here in Marin as "in-network" was denied. Why? Because even though they didn't originally show up on the Anthem website, there apparently are two plastic surgeons that *are* covered...but they're in San Francisco. Once I got over being scared and then pissed that Anthem feels it's perfectly okay to have zero in-network plastic surgeons in a county that has one of the highest breast cancer rates in the state if not the country, and filed both an appeal--which I was then told would take 30 (!) days to resolve--and a complaint about both those things, I took a deep breath and looked for the good news.

The good news is, once I looked up the two in-network San Franciscan plastic surgeons, I found they were both impressively qualified UCSF surgeons. In fact one of them, Dr. Foster, is both the chief of plastic surgery and breast reconstruction at UCSF and a respected and familiar colleague of my breast surgeon Dr. Ewing. (Yes, I checked with her.) So I called his office up and got an appointment for a consult with him tomorrow.

I'm trying to go with the mindset that things are happening like this not to frustrate and scare me (though it sure felt like that earlier today), but rather in order to get me to exactly the right person and place at the right time. The serendipity train has already brought me to the UCSF station, so I'm going to stay steady and hope adding this additional UCSF team member will work out just as well if not better than going with the Marin doctor. I'll find out more tomorrow, though. Cross your fingers for me that this is going to work out just as it should.

I had a really great day at the SF Burning Man Decompression event yesterday, even though it was a looooong day in which we worked our butts off loading, unloading, building and tearing down not only a small version of the Pink Heart theme camp but also some big art pieces (we brought and reconstructed the (Inner) Freak Show Booth and the Wheel of Participation that we'd built for the Pink Heart Carnival at Burning Man this year). Despite the schlepping and hassles, it felt really, really gratifying to see so many people enjoying and participating in something we'd created, especially the carnival pieces. All day and night there were lines (!) of people waiting to get into the Freak booth and play with the Wheel. I played "barker" for the Wheel of Participation for a few hours and had wonderful interactions with both kids and grownups. I encouraged people to tell jokes, give compliments, have conversations with strangers, escort others to their destinations, pick up trash, hug heart-to-heart, tell someone "I love you" and shout out something they loved. I gave away Pink Heart prizes (buttons and heart carabiners). I got people to appreciate their multifaceted freaky selves and fly their freak flags high. It truly was glorious fun.

Other highlights were some epic jams on the handpan, first with Josh and then the two of us with two random amazing violinists who happened by, a whole variety of awesome fire dancing, and of course many conversations with interesting and beautiful people. It was great to be around the Burner vibe one more time, and to bring the Pink Heart vibe to the hungry masses.

I find it both ironic and irritating that October is breast cancer awareness month. I keep seeing news stories and fundraisers and facebook posts full of pink ribbons and statistics and optimistic slogans. I wake up every morning, every single morning, and one of the first thoughts in my muzzy morning head is "HOLY SHIT I HAVE CANCER." (Followed closely by "AGAIN", for a double dose of angst.) I am usually an optimistic and energetic person in the morning, but now I slog through my mornings companioned by a heavy sensation of doom and dread that I have to work really hard to counteract. I finally get my head somewhat balanced and my attitude recalibrated and then boom, there's another goddamn pink ribbon or chirpy exhortation to keep fighting or choose hope or think pink or whatever. It's like the universe is rubbing my nose in it.

Believe me, I am REALLY F**KING AWARE of breast cancer right now. A lot. Extremely. Obsessively. Painfully. Urgently. Consistently. AWARE.

More Articles ...

  1. Courage Must (And Will) Be Applied
  2. Don't Wanna
  3. Good News and Bad News
  4. "How Are You Doing?"
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