SCOTUS SUCKS · Stupid Baby-Making Parts · support is important

BRCA Burnout, Blogging and Birth Control

blog_brb

You may have noticed (or you may not have, which won’t hurt my feelings in the slightest) that I have been on an extended blogging hiatus. I’m sad to admit it, but in addition to the complete mind-fuck that was DIY wedding planning, I’m not exaggerating when I say that I got burned out on BRCActivism – big time. I love my BRCA sisters SO much, but I just couldn’t handle the emotional commitment on top of the chronic pain, job stressors, wedding planning insanity AND blogging, so I quietly slipped into blogger hibernation mode. Don’t get me wrong – I’ve got tons to share, and I’ve actually written a few private posts that I will make public sometime soon (I mean, I’m practically legally obligated to share some wedding pictures with my followers, right? Check out our wedding photographer, because her stuff is the shit), but it was a necessary break that didn’t really have an end date until……….

@#*&! SCOTUS got me so riled up that I decided to come out of bloggy retirement, y’all!

To avoid offending anyone’s intelligence (I can’t promise I’m not going to offend your sensibilities, though, so proceed with caution), I’ll just link to the Scotusblog posts about the recent decision that pushed me over the edge:  Burwell v. Hobby Lobby Stores, Inc. Anyone who knows me probably immediately made a mental note to avoid me after hearing about this ruling. Seriously, hulk smash, SCOTUS.

This is a woman’s rights issue – fuck, this is a HUMAN rights issue. This is a religious freedom issue. This is a separation of church and state issue. This is, well, this is fucking insane. Laci Green put it best:

I read a lot of really amazing, passionate responses to this abomination of a ruling on social media … but I also read a lot of crap. A lot of “I’m playing devil’s advocate here” comments and “freedom of religion, yee haw!” posts (don’t get me started on why THAT is crap… read this guys take), and a lot of people missing the point. One of them, a Facebook friend, posted this status today:

What if everyone who is spending time on FB posting, sharing, bitching and complaining about yesterday’s Supreme Court ruling spent the same amount of time advocating for Childhood Cancer???? Contact your Fed Rep and tell them to appropriate $ towards research for childhood cancers. Reach out to a family in your community to see how you can help. Help our future generations or else birth control won’t even be an issue to discuss.

My initial reaction was eye-rolling and exasperation. Railing against SCOTUS shouldn’t imply that we care any less about Childhood Cancer. They have nothing to do with one another! Then I thought about it for a minute, and (of course) my BRCA brain zeroed in on the “Big C” in her statement. Cancer. Oh. My. God. Contraceptives. Cancer. Why hadn’t I thought of that implication before?! Here I was worried about baby-making and choices and women’s rights – but birth control is a LIFESAVING measure for women like me. This whole issue is so much bigger than sex, people.

Ovarian cancer kills people. That’s a known fact, and mutants like me quake in fear at the mere mention at OC – but, what can we do to protect ourselves against it? Uh… not a whole lot, aside from TAKING BIRTH CONTROL. Birth control has been shown to greatly reduce the risk of Ovarian Cancer, and as it turns out, the longer an individual takes it, the lower their risk! It’s so important to women with a risk of OC (not just BRCA mutants, either!) that our gynecologists actively recommend that we use it, despite the slight increase to our risk for breast cancer! This benefit is often thought to be limited to birth control pills, but studies show that ALL forms of contraception (including vasectomy?!) help to reduce the risk of Ovarian Cancer development. Hobby Lobby is so focused on preventing (imaginary) abortifacients from getting in the hands of women who (clearly) can’t be responsible enough to make a decision themselves that they are actively preventing women from protecting themselves from the “Big C”?

heart

Snark aside, cancer risk reduction is just one of many non-intercourse based reasons that birth control is an essential *medication* for many women. Decreases in chronic acne, migraines, and severe cramps, as well as regulation of menstrual cycles and other hormone levels are seen in patients that utilize birth control. Polycystic Ovary Syndrome, a painful condition that plagues many young women, is commonly treated with hormonal birth control, among other hormone treatments.

Other posts have pointed out the multifaceted use of birth control in the past few days, so I’m not rattling any new cages here, but the potential harm to women is palpable and will be documented. I like to talk about cancer (what can I say? it’s my wheelhouse), and I felt like kicking and screaming, so there you have it. There are SO, SO, SO, SO many more cans of worms opened by this ruling and I just picked one tiny piece, but any excuse to make a fractious image like the one above, eh?

 

brca bullshit · pain management · Stupid Baby-Making Parts

Approaching the 1-year-boobieversary… with a whole new set of problems.

I anxiously approach the 1-year anniversary of my mastectomy with the hope that some magic switch inside my body will say “okay, you’ve had enough” and the pain will be gone. Sadly, not only do I know that won’t be true, but that I will potentially have scarier things to worry about…

Let me catch you up:
1. The Palliative Care doctor: Nice, but didn’t offer any solutions except taking amitryptaline (a different antidepressant) and stopping the cymbalta (which I got from my PCP, if I didn’t explain that before). When I went back for a follow-up and said I felt the same, however, he said there wasn’t anything else he could think of — according to my pain chart, I had literally tried everything. End of story: Dumped again.

2. The psychiatrist: saw her shortly after above-said dumping, and she finally went to the dark side. “If all these clinicians think it’s in your head, then maybe we need to treat that first”. I was devastated, as she and my PCP were the only ones who had remained who didn’t think I was crazy. So, end of story, I’m on a LOT of crazy people meds:

pills

  • Lamictal- normally used for bipolar disorder…and doesn’t play nice with my birth control (at 50mg now, but will slowly increase to 100mg!)
  • Wellbutrin- antidepressant that’s supposed to help my sex drive …sadly, it doesn’t work. My poor boyfriend.
  • Effexor- ANOTHER antidepressant…(175mg-just DOUBLED my dose last week)
  • Adderrall XR- the only way I can stay awake any more(?mg)
  • Klonapin- the only reason I can sleep at night(3mg per day)
  • Neurontin- the only legit pain component of this regimen (1200mg/day)
  • And a whole bunch of supplements, teas, extracts, etc. aimed at keeping these side-effect-heavy drugs from destroying me (also, not really working)

I see her again next week, so here’s hoping she believes that I am still in exactly the same amount of pain as I was before. Jason says they make me “easier to be around”, so I guess I was a little mad at the world there for a bit…but I shouldn’t need THIS MANY pills to calm my anxiety, should I?

3. The gyno-onco: After having *excessive* bleeding in the middle of my cycle, and the worst cramps of my life, I went for an exam and the words I never ever wanted to hear came out of her mouth: “you have mass on your right ovary”. From then it was a flurry of getting a pelvic/transvag US, getting my CA-125 done (still haven’t bc I couldn’t find a lab to do it within my network) and then having 4 different people reading it (including the radiologist)!

Nurse 1: “It’s normal”.
My response: “What the fuck does that mean? How does that help me explain bleeding, pain and all my other symptoms?”
Nurse 1:”You have bleeding? And pain? You’re BRCA2+? Let me have the nurse practitioner look at it again.”
My response: “Why don’t you people ever talk to one another?!”
Nurse 1: (silence) “We’ll call you back.”

Nurse 2:”The nurse practitioner said it looks normal, of course, you do have a mass on your right ovary.”
My Response: “What the fuckity fuck?! Why wasn’t that said before? You can’t tell if it’s normal from looking at an US? What about the bleeding?!”
Nurse 2:”The nurse practitioner says to take Advil and two birth control pills for three days.”
My response: “Let me speak with this “Nurse Practitioner”
Nurse 2: “We’ll call you back.”

NP: “It’s very small and they usually go away on their own.”
My response: “So small that the doctor could feel it, huh?”
NP: “Well, she is a very good doctor.”
My response: “I know, that’s why I pay to see her. I would like to talk to HER. I have very specific needs, of which she is aware, and I do not wish to gamble on my life. No more speculation, just have her call me ASAP.”
NP: “We’ll have her call you when she gets in on Thursday.”

[Today]
Nurse 1: “The doctor has looked at your US and wants to see you as soon as possible.”
My Response: (In my head, I said NO DUH…) “Please schedule me for her first available”

I love nurses, and I admire nurse practitioners, but if I’m going to a specialist, I don’t need everyone and their brother speculating. Of course she wants to see me. Of course she knows I’m bleeding and in pain. Of course she factored these things in when examining a “normal” US of a 30-year-old female. Ugh.

So, that leaves me with just over a week until my boobieversary, with a possible abdominal surgery to biopsy it looming on the horizon. There goes the leave I’ve been saving for vacation…womp womp.

Médaille miraculeuse, protège-moi.