Month: March 2013

brca bullshit

Happy One Year Boobie-versary to Me!

SisyphusRealizedLeave a comment

Somehow I thought this moment would be exhilarating – like getting off of a roller-coaster and looking at your partner and saying “whew! wild ride!”… but, sadly, I’m still on the kiddie rides, whining “go faster, go faster!”

This is not the celebratory day that I wanted it to be, but I have managed a few accomplishments in this less-than-pleasant year:

  • I’m coping with the pain without narcotics, and I’m not discussing the pain anymore (with anyone except my doctors, my mother and J – if he really wants to know) – mostly, I’m just excusing myself and breathing through it.
  • I’ve learned a HELL of a lot about boobs. Like, a lot. Way more than I ever thought I would have.
  • I’ve managed to remain attached to the most wonderful man in the world. If I haven’t chased him away yet, I think he’s in it for the long haul.
  • I’ve tried: injections, narcotics, topical painkillers, pain patches, special diets, herbs, essential oils, chiropracty (is that a word?), physical therapy, every exercise I’ve ever found in any mastectomy reconstruction book, meditation, screaming, stomping, yelling … and none of it has worked.

Here is what I wrote on Facebook – the very first time I acknowledged (openly) my surgery, my experience and spoke honestly about it with people who may not have known:

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“There’s no place like home”
Fashion is passion.
Sleeping beauty.
Super Healer
From Mom’s POV

The responses were surprised, supportive, caring and thoughtful. It was a very heavy day, but I managed to find some bright spots (and let’s face it – turning your life into a fairy tale is what everyone does when things suck, right?). Here is what my Facebook friends said:

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No matter how bad things seem, someone always has it worse. 

I need that tattooed backwards on my forehead, I think, although I am beginning to get to a place where I can stop, take a breath and remind myself to be grateful for the life that I have.

brca bullshit · pain management · Stupid Baby-Making Parts

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

SisyphusRealizedLeave a comment

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.