yearandahalfiversary

i woke up this morning and realized that today is a year a half since my pbm. july 17, 2013 seems like a million years ago, and it’s hard to remember what things were like before brca took over my life and i turned into an 18-year-old boy obsessed with all things boob. i decided to look back over the initial emails between me and the center, and i finally got up the nerve to look at the photos i’d sent them on april 26, 2013 when they were first determining if i was a candidate for hip flap reconstruction. i had kind of forgotten what my body used to look like. and while i am still not completely happy with how my new boobs look now compared to my originals, i’m going to try (haha) to stop being so hard on myself all the time, because my new nontickingtimebomb body looks pretty great overall, and i am so grateful to my surgeons for that.

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third time’s the… tbd.

my sister and i flew back to new orleans last wednesday 12/10 and were brought over to the center for my 2pm pre-op appointment. it was so nice to see susan at the front desk again. she is the kindest person i have ever met, and it amazes me how she can remember every little detail about someone she’s only seen a few times. we caught up, and i told her about my having won a scholarship to the force conference and seeing dr. sullivan there – and how i wasn’t intending to switch surgeons, but that it just kind of happened. i told her i felt really awkward about the whole thing, and she reassured me and said that i am the only one worried about it – which is probably true, but i still couldn’t help feeling like i was cheating on dr. d.

anyway, we were brought back to an exam room so i could have some updated photos taken. dr. sullivan came in to marker me up and talk to me about the new plan of adding a small implant to try to address my lack of upper projection. he said that even if he removes some overall volume, it isn’t an exact science, and it was likely i’d end up being somewhat larger than i am now. i said i thought i would be okay with that if it meant a more symmetric and better overall shape, but that i’d really prefer not to be any larger. he agreed that my size fit my body frame, and we talked about trying more fat grafting instead, and i told him i was worried it would reabsorb again, and i really didn’t want to go through another surgery. eventually, we settled on natrelle 410s in the smallest size – these are the “gummies” with cohesive gel, and their shape (not round) would hopefully give me better upper projection with less overall volume. he said he would probably want to place the implant under my muscle, which surprised me, because i had talked to a couple other women who went this route and had implants added over the muscle, but dr. sullivan said that he thought i’d have better results even if it did mean a slightly harder recovery period, and i told him i trusted him to do whatever would look best. dr. sullivan finished markering me up (talked about tacking up the right boob to try to get it to hang more evenly to the left one), more photos were taken, and i signed release forms, and by this time, it was after 5pm.

even though my sister and i were looking forward to our delicious tradition of charbroiled oysters, we were so hungry and tired (and i was feeling really anxious) that we ended up just having semi-lame dinner at our hotel. we went back to our room, and the center called to tell me my surgery had been pushed back and i’d be picked up at 8:30am instead of 5:30am. turns out we probably could have made it to drago’s for oysters after all, but oh well. i talked to a couple of my pbm buddies about my pre-surgery questions, since this was such foreign territory to me, and after taking my first of two stinky-pink-hibiclens showers, i tried to get some sleep.

thursday morning, i took my second hibiclens shower and asked my sister for the 243rd time if i was going to end up looking better instead of worse. i just couldn’t get over feeling like i was tempting fate and that i should leave well enough alone. we were brought over to the center and given a room, and i saw jamie, one of my favorite nurses. we talked about dr. d running around yelling, “i let her ride in my car, that bitch!” and she told me that dr. sullivan was a perfectionist and i’d look great. went back downstairs and was called back to change and have an iv started. as usual, my veins decided not to cooperate, but the numbing spray helped keep my anxiety semi-down. then the anesthesiologist (dr. kimora? sp) came in to visit with me, and lo and behold, i was going to have melanie (co-anesthestiologist? assistant anesthesiologist?), who remembered me from my initial surgery! we talked about my post-surgery nausea/vomiting issues, and she said she was going to add some zantac to my iv to hopefully help with that this time around.

dr. sullivan came in to talk to me right before they brought me back, and he said he’d been up all night going over dr. d’s notes and my chart, and he decided that he wasn’t sure an implant would be the best solution and wanted to know if i’d be okay with heavy fat grafting instead. i had still been feeling torn over what to do, and so i told him he could wait to get in there to see what things look like and do whatever he thought would be best. he then agreed to take some photos – and videos! – for me. so they taped a piece of medical tape to the back of my phone and had me write my password on it. eventually, i was being brought back to the operating room, and somehow dr. kimora, melanie, and i were talking about my wanting to remember this part, so dr. kimora told me to pick a number and he’d see if i remembered it later. i said, “if i have to pick a number, it’s going to be 3, and of course i’ll remember that, so you need to pick the number.” so he said okay and picked 17 and told me to start taking deep breaths from the oxygen mask he was placing over my face. i was breathing and saying “17” and they laughed, dr. kimora told me to take 17 deep breaths, melanie accused dr. kimora of cheating, melanie told me to take five deep breaths, and that’s basically the last thing i remember.

thursday evening was mostly a blur, courtesy of the morphine pain pump (aka bliss). my wonderful nurses took care of me and interrupted my sleep every hour or so to check my vitals etc. i had one drain in the right boob, which wasn’t outputting much, so they said it looked good for my getting it out either friday or saturday before heading home. friday afternoon, dr. sullivan came by to check on me (on his day off – casual sullivan!), and he said he was really pleased with everything and asked if i’d looked at my photos/videos yet. i told him i had peeked at the photos but not the videos yet, other than to see that it didn’t look like they’d done a dance for me as requested. one of the nurses (in recovery i think?) had told me not to look at the videos until i got home, so i think i was nervous. i unfortunately can’t remember everything dr. sullivan said other than that he had to do a lot of fat grafting from different areas (which is why i might find weird areas like the tops of my thighs hurting), that it’d be great if all the fat grafting stuck around but that that never happens, that it’s easier to remove some later if too much does stick around and i end up larger than i want to be, and that if i need more fat grafting done, he’ll fly me back (?!).

the surgery photos looked nice and symmetrical, but then the fun swelling set in, so i haven’t been able to tell what things will really look like, but monday night i got very upset when we were changing bandages and it looked like the right boob appears to be lower than the left one again. trying not to think about it too much and hope that it’s just swelling, but i really just want to be done with this part of things already. so, was third time the charm? tbd.

third (stage two) time’s the charm, chiro stuff, and an article i can relate all too well to

as usual, i’ve been a-slackin’ on the blogging front as of late, but at least i finally have some news to share.

my surgery date has been booked. i will be going back to new orleans for the fourth and this-time-i-really-mean-it final time on december 10 (pre-op appointment that afternoon, surgery early december 11, and fly back to austin on december 13). the new plan is to cut out the remaining hard/painful areas of fat necrosis, do some lipo to reduce the overall volume, and then add a small implant (over the muscle but under the new tissue) to hopefully solve my asymmetry issue.

i’m super sad i have to miss bnat this year (that’s assuming i would even get in), but fingers, toes, and the two meowsers’ paws crossed that two months from yesterday, i will be on a plane back to austin sporting a cancer-free pair of pain-free symmetrical foobs.

in other news, we changed insurance companies at work this month, and we now have chiropractic/acupuncture coverage. so yesterday, i had my first appointment with a chiropractor/acupuncturist/nutritionist. some of the highlights: an award fell off her shelf when she walked in the room, and it turns out she opened her new practice’s location on – drum roll please – march 3. my birthday. probably not related, but i took it as a good sign anyway. also, she does cold laser therapy, and she swears it helps with scar tissue, so i’m excited to find out for myself. and, all this time i’ve been whining about my ribs/sternum area hurting so much still – turns out two of my ribs have been out of place. yep. hurt like a mofo all night and this morning, but i’m hopeful this gets me into better shape before my surgery.

last but not least, a friend posted this article today, and i really could have written it myself, so i wanted to share it with my three readers: http://www.newrepublic.com/article/119798/living-brca-breast-cancer-gene.

six-week update | force conference

i was recently reminded that i’ve been a terrible blogger as of late. it’s been six weeks since what was going to hopefully be my last surgery (and tomorrow will be eleven months since my double mastectomy, if you can believe it – because i sure can’t), and i haven’t posted an update. a friend emailed to check on me last week, and this is what i wrote her back (when she asked how i am and that hopefully she wasn’t being too nosy):

“Aw, not too nosy at all. Thank you for thinking of me! I just got a little tired of feeling like I was over-sharing… I know I need to update my blog for any women who actually are potentially using it as some sort of resource (for whatever it’s worth, or lack thereof), but I hate to put something like, “well my asymmetry is heading back, and I now have two new hard/tender areas to replace the ones that were removed,” so I just felt like maybe I should try to give it some more time (as they love to tell me I need to do…) and see if anything changes. I mostly feel okay (still sore in my chest, kind of like I have a rubber band wrapped around me), mostly just frustrated and sick of it all, ya know? I’m actually going to a conference this weekend (I won a scholarship haha) about hereditary breast/ovarian/pancreatic/etc cancer…my surgeon’s partner is going to be there, and I intend to stalk him and make him feel me up and tell me what he thinks. So that’s the latest, probably more than you wanted to know.”

i spent the past few days in philadelphia for the FORCE conference (http://www.facingourrisk.org/).

brca beads

i won a scholarship that covered my flight, hotel, and registration fees, so it was an amazing opportunity to listen to a lot of brca experts from around the country talk about ovarian and pancreatic/colon cancers, my biggest concerns now that i have (virtually) no breast tissue. as an added bonus, i knew my surgeon’s partner was going to be there, and i thought i might be able to talk to him about why my body seems to hate me. and on top of it all, i was going to get to meet some of the amazing women who have helped me so much over this past year.

the conference was a really great, although fairly overwhelming, experience. i talked to my surgeon’s partner, who said that if i wanted to try again, we could do another surgery later this year to try to resolve my unfortunately continuing issues (and i had a piece of king cake and found the baby! – booty up, clearly a sign).

king cake baby

i talked to another surgeon, who basically told me i was completely deformed and needed no fewer than two additional surgeries to try to fix everything. and then i talked to two other surgeons who tried to alleviate my fears after the second guy made me feel like total crap.

i met vinnie the tattoo god. he said my hip/butt scars are getting close to being ready for tattooing – so excited!

vinnie

i met annie parker, a hero who has beat cancer three times and has helped change my life.

annie parker

i met this really great gastroenterologist who told me to email him for advice on finding a local gastro to start screening me. (for anyone who is interested, he recommends an annual endoscopic ultrasound and basically said that abdominal ultrasounds are useless.) i was told i can safely wait until my mid-40s to decide to have my girly parts removed, which was a definite relief. (since the ovarian cancer risk for brca2+ women from age 40-50 is only 2-3%, i was told 45 would be a relatively safe age to wait to, if i am not ready to do it yet.)

and i met some of the loveliest women (and men) ever.

force ladies

i even saw one of my oldest friends, who recently moved to philly, for approximately three seconds (well, an hour).

brian

and i had two cheese steaks, a water ice, and a cannoli. šŸ™‚

cheese steak 1 cheese steak 2 water ice cannoli

 

finally.

so after one of the most stressful weeks i can remember, i finally made it to new orleans today. just a quick summary, because i’m too tired to even think about it anymore:

last week, i got a call from nola that my surgery was going to have to be cancelled, because bcbs denied the appeal, saying it wasn’t medically necessary. i called bcbs, who wouldn’t talk to me. i actually left what i’m sure sounded like the voicemail of an insane person. something along the lines of, “you try being in pain 24/7 for months on end after having your boobs cut off and not having them be symmetric on top of that, AND having a concave ass, and you see how you like it. i insist that you call me back and approve this surgery.” nola wrote another letter and had a peer review set up for thursday, make that friday, make that monday, make that tuesday at 4-freaking-30 pm. yes, they moved it to the evening before i was to get on a plane. and this was all happening in the middle of rehearsals for the acl hall of fame induction ceremony, so to say i was stressed would be a serious understatement. on the plus side, i was reminded what amazing people i have in my life. my wonderful station manager, bill, called a friend. at the house of representatives. who called an attorney. who called the bcbs lobbyist. and i met with the lawyer monday morning, who sent a letter to bcbs. i continued to sit in limbo, but long story a little less long, i found out at 5:30pm-ish yesterday that bcbs had finally approved a portion of my surgery, and nola said they’d just fight the rest on the back end in claims. i also spoke to the texas department of insurance, who is filing a formal complaint against blue cross, for whatever that’s worth.

so here i am in new orleans on jazz fest weekend. i had my pre-op appointment this afternoon and got uber markered up. hopefully for the last time. AND FINALLY GOT TO COLLECT ON THAT FERRARI RIDE DR. D PROMISED ME. riding on the 10 with the top down going approximately 100mph was so. fucking. rad.

ferrari ferrari ride!

and now i relax and watch telo and camille on the webcam naomi again has set up for me while i wait for her flight to get in tonight (which has already been delayed twice now, apparently thanks to the lax ground stop earlier today). the car comes to get us at 6:30am. and good riddance to painful fat necrosis, i say. and hello lovely new boobs that aren’t trying to kill me.

also, my horoscope for tomorrow: “James Bond has nothing on you right now — not one darned thing. He might be multilingual and an expert at escaping even the most heinous of international archenemies, but he’d definitely want to know more about the techniques you’ve been experimenting with lately.”

FUCK YOU BLUE CROSS

i just got a letter from my oh-so-wonderful insurance company saying that the appeal for my upcoming surgery has been denied, and my surgery scheduled for two weeks from today has been determined to not be medically necessary. here’s what i have to say about that: FUCK YOU BLUE CROSS!

my favorite part of the letter: the difficulty in these staged breast reconstructions and multiple revisions is determining when the process has changed from restoration of form to trying to achieve a “best” result. although the women’s health care act mandates coverage for reconstruction, it does not mandate continued revisional procedures as long as the surgeon and patient want. as plastic surgeons, we tend to want to continually revise, always trying to make the result better. medical necessity is not present.

my asymmetrical chest that has two very large rocks around my sternum is not “an excellent result,” and whoever the clearly male asshole medical reviewer is, doesn’t know shit about living with pain and everything else that goes along with having had a double mastectomy. i have to have this surgery. i am not living with these painful fat necrosis areas any longer. it’s already been months, and they haven’t changed or reduced in size at all (as nola seemed to think they would). this is beyond ridiculous, and i really wish i had just gone flat at this point.

FUCKFUCKFUCK

/rant

brcaversary

one year ago today, it was an ordinary friday afternoon, and i was sitting in my office finishing up for the day, when i got an email that would literally change my life. when i saw the email from 23andme, i was excited and texted naomi to see if she’d gotten the same email.

the rude teacher that she is, she didn’t respond because she was in the middle of class, and the impatient sister that i am, i couldn’t wait to open the “fun” results that we’d been waiting for for almost four months. why did i get curly hair and she got straight hair? will heart disease be in my future? it was finally time to find out!

the possibility of finding out i am brca+ didn’t even occur to me, since myriad owned the patent.

apparently i was uninformed.

“click here if you want to see your brca results” was suddenly staring me in the face. i texted naomi again, this time a little freaked out. my curiosity and anxiety got the best of me, and i knew i couldn’t wait until she got back to me, so i said that yes, i did want to see my results, knowing that even though almost every woman in my family has had breast cancer, i should stay calm because surely that was not my future.

and there it was.

variant present.

galia farber has the 6174delT BRCA2 mutation.

and thus began my new career of researching my options and how to get rid of the ticking time bombs i had always been so fond of.

in 26 days, i will have my third and hopefully final (!!!) surgery in this crazy surreal year. i still sometimes can’t believe that i went through all of this, but i am thankful i met so many amazing people along the way, and i hope i’ve been able to help someone else at some point, too.

third surgery logistical fun. or how a stranger made me cry. orrrr sheraton: my go-to hotel for life.

in between prepping for sxsw madness and work in general, i’ve been trying to figure out logistics for my third (and better-be-final-damnit) surgery on may 1. new orleans is very austin-like in its love for festivals, and my surgery happens to fall over weekend two of jazz fest. the flight to nola on april 30 was still reasonably priced (and naomi just has to fly in separately that night so she can teach that day and not have to take that day off as well, meaning i’ll be going to my pre-op appointment solo), but the flight home on monday may 5 is pretty outrageous. thinking of renting a car now and forcing poor naomi to drive her useless sister home (with a fun hourly stop to walk in place for a few minutes to make sure i don’t get a blood clot [something that can apparently happen pretty easily after surgery, which is why the center sends patients home in these oh-so-sexy ted hose: http://en.wikipedia.org/wiki/Compression_stockings%5D).

anyway, so back to logistics. i’ve been checking discount hotel websites and was considering booking one of those you-can’t-know-the-name-til-you-book-it-because-it’s-such-a-fab-bargain-but-the-hotel-is-a-dump-in-the-middle-of-nowheresville hotels, but meanwhile, two different things happened. my fantastic colleague leslie reached out to a couple people she has relationships with at hotels, to see if anyone might be able to offer a discount despite the jazz fest issue. kathleen, the manager of the sheraton metairie, offered me a room at a significantly reduced rate (and sent some very kind words about being happy to help, that her mom had died of breast cancer in 2002). then i heard from dr. d’s nurse and the center’s travel coordinator, who were able to get me a room at the hope lodge, a place funded by the american cancer society that allows patients to stay there during post-surgery/treatment recovery at no cost. this left me feeling extremely torn – as amazing as the “at no cost” sounded, i was pretty nervous about being surrounded by overwhelmingly sad at the hope lodge, but with all my other medical expenses, there was no way i could pass that offer up. so i sent an email to the lovely catherine at the sheraton here in austin, who was liaising between me and kathleen, and told her that although i truly appreciated the offer, since cost was my main concern at the moment, i’d have to go with the hope lodge instead.

then late yesterday afternoon, i got an email from catherine with the most amazing conversation that had transpired between her and kathleen. kathleen wanted to offer me a room at no charge, despite jazz fest, despite my having the room at the hope lodge, despite it being totally and completely unnecessary. she said that she’s sure hope lodge is very nice and she passes it on her way to work, but she doubts they have a bar, and they do. (heh heh.) kathleen and catherine joked about mardi gras, and then the email was in my inbox, just waiting for me to sit in stunned silence, reading and re-reading an incredibly generous offer from a total stranger.

sadly, no one seems to be unaffected by the “c” word. but i’m a very lucky girl. and i am continually reminded how much voodoo magic there really seems to be around new orleans (see https://brcaingbad.wordpress.com/2013/07/16/i-made-a-friend-what-i-got-in-the-mail-today-5-im-trying-not-to-barf/).

…and now, back to our regularly scheduled no-sleep-til-april.

random thoughts for a monday afternoon.

i’m frustrated that i need another surgery. i really hate that i’ll have to have my incisions opened up again – at this rate, will the rubber band-like feeling around my chest ever go away?

i might as well make the most of things and have my surgery on jazz fest weekend. it’s almost like taking a vacation. right?

if a random stranger who stumbles across my blog happens to know someone with southwest airline (or hotel, for the two days after surgery) miles going to waste, that’d be pretty lovely.

i’m spending my day off reading (which i never do anymore) the goldfinch while trying to put something together to enter the mlb “go to bat against breast cancer” contest. each team chooses a winner, so i feel like i have a semi-decent chance. and i’d get to be an honorary bat girl for the cardinals! alas, i’m having total writer’s block.

phase 2b is a go.

i talked to jeanine at nola this morning, and i still need to send 12-week photos (02/12), but at least the waiting and wondering is over, and i have a tentative phase 2 take 2 surgery date scheduled now. april 2. please oh please let the fat necrosis around my sternum get resolved once and for all and the re-filling-in of the concave hip/butt areas last longer this time. and let me have symmetrical boobs too.