angelina jolie part deux

this morning started out like any other. my cat was meowing incessantly and keeping me from that ten blissful extra minutes of snoozing, and so i reached for my phone to see what amazing things had transpired in facebook/instagram/twitter lands overnight. imagine my surprise to see angelina jolie’s second op-ed piece for the new york times right at the top of my newsfeed.

i admit i got a little teary while reading it. i struggle with the same thoughts she does/did. i am terrified of going into menopause, and i am putting this surgery off for as long as possible. but am i tempting fate? every six months when i have a ca-125 blood test and trans-vaginal ultrasound, i spend an extremely anxious four-five days waiting to find out if things appear to be stable. cancer-free. do i keep waiting until i maybe get married and maybe decide i actually want to have kids? do i send myself into early menopause and become an even bitchier version of myself that now also a higher risk of heart disease (which runs in my dad’s family) and osteoporosis (which, in addition to being brca2+, also runs in my mom’s family)?

angelina announced she’d had a pbm on may 14, 2013, just three days before i publicly announced (via facebook world) that i’d be having my pbm exactly two months later, on july 17, 2013. she – and her candidness – has been paving the way for more open discussions taking place about hereditary breast and ovarian cancer. and i am grateful for it.



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.

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:

things you don’t want to hear at your first physical therapy appointment

“oh you poor thing, your scars are so big.”

because i didn’t already know that. so thanks, lady.

“did you talk to more than one doctor before having surgery? are you sure you really needed to? you’re just so young.”

well, considering i had an 87% risk of getting breast cancer, and my mom was 40 when she had breast cancer (and she’s currently dealing with stage iv colon cancer), and her mom had breast cancer twice, and basically every woman on my mom’s side of the family had it, yeah, i’m sure i really needed to. but thanks for calling me young.

brca friends and bravery and stuff and things

today in the studio, evan interviewed lizz winstead, co-creator of the daily show, for an upcoming episode of overheard with evan smith. during the q&a, someone asked for advice on getting discovered. after giving some advice on writing etc, she also said, “bravery is terrifying to people, and every time you’re brave, somebody who isn’t is going to lash out and try to destroy your bravery, so those people need to be marginalized.”

this really struck me, because after i had my prophylactic bilateral mastectomy last summer, a number of people wanted to tell me how brave i am – to which i would respond, “i’m not brave at all, i’m just terrified of cancer. and chemo. and losing my hair. and dying.” but a lot of people don’t feel like this surgery is a brave thing to do at all (one example: melissa etheridge, who actually had breast cancer and said that angelina jolie’s decision was a fearful one and not brave at all).

anyway, today my friend andrea, who i met via the young previvors group i found on facebook last year when i found out i’m brca2+, posted the link to a talk she just did, and it struck me as really interesting timing after hearing lizz’s comment today. i haven’t written here lately, because i have nothing all that enlightening to say. chronic pain continues, asymmetry continues, and the last surgery didn’t solve world hunger or my issues, and i hate feeling like i’m still solely focused on these damn boobs. (for anyone who really wants to know though, it looks like i may attempt one additional surgery at the end of this year. yeah yeah, i know. but i’m hoping it’s short-term annoyance for long-term okay-ness.)

but to get back to andrea – andrea is brave. and not just because she speaks so eloquently when my greatest fear (okay, after bugs and cancer) is public speaking.

watch her talk here:

one week until one year

it’s crazy to believe that one week from today will be the one-year anniversary since my double mastectomy. it feels like a million years ago and a day ago, all at the same time.

(in reality, today marks ten weeks since my third, but sadly, probably not last, surgery, since the effing pain and asymmetry issues have yet to be resolved, but that’s another story.)

since this momentous occasion and naomi’s birthday both fall within the same week, we’re going to celebrate with a sisters’ getaway to cabo. i’ve been super stressed and worried that we should cancel, because one of my two best friends was diagnosed with stage iii kidney disease two weeks ago, and he needs daily fluids along with a ton of meds.

telo fluids

thankfully though, i have two really great friends – one who will be staying at my place for the four nights we’re away, and one who will be coming over each evening to give telo his fluids – and i am finally starting to get excited about an actual vacation (sorry, but going out of town for surgery, even if it is to new orleans, does not count).

so i’ve spent the last couple weeks on a desperate mission for a bathing suit. i am finding myself feeling even more awkward about my body image issues than usual, and no matter how many people tell me i should own my scars, i still want to find a bathing suit that doesn’t call a lot of attention to them, especially since my hip incisions stick out of pretty much any bikini bottom i’ve tried (and every one piece i’ve tried has been a disaster). anyway, long story short, i have two days left to find a bathing suit. wish me luck!

and on that note, this video is beautiful.

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 (

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!


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).


and i had two cheese steaks, a water ice, and a cannoli. 🙂

cheese steak 1 cheese steak 2 water ice cannoli