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.”

Advertisement

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

23andme

two blog posts in one day?

when naomi and i ordered our dna kits from 23andme at the beginning of this year, we had no idea that they tested for the three brca founder mutations. up until recently (thank you supreme court), myriad genetics held the patent on genetic testing for the brca mutation, so it never even occurred to me that there could be a possibility of finding out something this life-altering via a “fun” dna test.

now 23andme is finding themselves thrust into the spotlight, with the fda ordering them to halt sales: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm

here’s an article that explains it a bit more simply: http://money.cnn.com/2013/11/25/technology/fda-23andme/

the problem is that, for every person like me who learns they’re brca+ (albeit accidentally) via 23andme, there are many more people who may have a mutation but won’t find out – and may be under the false impression that they are negative when they may not actually be negative at all – because 23andme only tests for the three “founder” mutations (see blue text below):

23andme brca

apparently the fda doesn’t think people know how to read the fine print. hell, i didn’t know what i was getting into myself, so maybe i’m just proving the fda right (although in my case, it was because i wasn’t seeking brca testing – and was actually inadvertently trying to avoid it). people just need to understand that they won’t necessarily learn EVERYthing from this test. and if someone does learn of something, it’s obviously important to speak to a medical expert – and get retested as well – before making any major decisions. i learned of my results on a friday afternoon, and i called an oncologist – both to see about next steps and to see about getting retested – on monday.

the other problem is that i was never referred to a genetic counselor/specialist. and when i tried to find one on my own recently, it turns out blue cross (at least mine) doesn’t cover such a thing. so all the extra stuff i’m dealing with (increased risk of ovarian, pancreatic, colon, skin cancers) – i just have to figure it out on my own based on whatever each oncologist thinks makes the most sense (and let me tell you, they’re all different).

i had pretty much put my 23andme results aside after april 5. there was nothing i could possibly learn that would make finding out i’m brca2+ any less shocking (and the only positive thing i learned was that my sister is negative for the mutation). but in light of the recent fda developments, i just went back and revisited my results for the first time. and i actually found out something “fun” – i have moderately greater odds of postoperative nausea and vomiting! it actually makes me feel a little better about why i threw up after both surgeries, despite the anti-nausea patch and meds they gave me.

so, other than better educating people, here’s what also needs to happen – we need to have better access to genetic information so that further advances can be made in actually curing diseases, not just treating them: http://www.free-the-data.org/

my brilliant friend, filmmaker joanna rudnick, explains it very eloquently here: http://www.huffingtonpost.com/joanna-rudnick/free-the-data_b_4283862.html

and here’s my friend andrea’s take on this whole thing as well: http://www.bravebosom.com/fda-btchslap-of-23andme-a-brca-previvors-perspective/

there are other good things that can come from 23andme too – granted it’s also brca-related for me, but i met a cousin (distant, but totally still counts). we have so many random things in common, but one of the biggest is that we both found out we’re brca2+ because of 23andme. however, i was already undergoing surveillance, because i have a strong family history of breast cancer. she has zero family history of breast cancer and i imagine was even more shocked than me. 23andme not only led to my meeting her, but it most likely saved her life. and tomorrow, my dear cousin will be undergoing a no-longer-prophylactic bilateral mastectomy. i will let her speak for herself:

http://larasgenealogy.blogspot.com/2013/11/how-genealogy-saved-or-significantly.html