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/).

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).

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.

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.

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. 🙂