BRCA Gene & Pauses

BRCA Gene & Pauses

Today marks 3 weeks & 2 days since I underwent the 1st of 3 surgeries. I've never had a surgery before & now -as often happens with experience- I have a deeper respect & understanding for those who've endured.

Because my surgeries are prophylactic I've been receiving an undeserved amount of accolades for my bravery, & while I love a nice compliment as much as the next guy- I can't help feeling like it's misgiven. I am brave in some arenas, but not necessarily in this case. 

Let me fill you in.
About 7 years ago I was living in San Francisco with a teaching job that offered fantastic insurance coverage. I received a phone call one day from them asking if I was of Ashkenazi Jewish decent & if I had ever been tested for the BRCA gene that is common amongst the tribe. BRCA: a genetic mutation that predisposes the hosts to a greater chance of developing breast & ovarian cancers by somewhere in the 70%. I went in for a test & found out I was a carrier.

Luckily there are preventive measures that are available to avoid getting sick. Remember something about how Angelina Jolie got her operations? Yes, this was her pest too. I was told that I should make moves on the surgery when I hit my mid 40s & life moved quick! 

On January 8th I underwent a reduction because if I hadn't they would have had to make everything the same size & shape, & I figured might as well take a bit off & bring things up a bit. I am doing all the things I can think of to tend to my healing. The next surgery (the big one) is April 26th. The 3rd will be removal of fallopian tubes & ovaries. It also might include implants if the surgeon determines that she can't do direct to implants when she does the mastectomy. This is common where the plan can't be laid determining temporary placers or implants until they see what's going on.

I've not been at my soldering bench for far too long & miss it very much. I long to make pretty things again, but have been warned that it can take a while to heal & I should give it at the very least 1 month before going in. The hiccup I've experienced is for what I believe is a pretty uncomfortable tape allergy. I go back to my plastic surgeon tomorrow to determine if it's indeed an allergy or an infection, in which case I'll start antibiotics. I've been sending a LOT of titty pics (to the nurse) & joked about how I've sent out more in the last few weeks than in all of my 30s! I think apart from the discomfort- the hardest part of this all is the not-knowing. If only my boyfriend Ryan was a doctor... He was an EMT a long time ago, working for the fire department, so at least he's able to help me with (so much stuff!) the bandages & things that I'm a bit slower to be able to look at. Having someone professional to tell you around every 4 hours that everything is looking normal would be such a gigantic relief, but you can't have it all.

It's interesting to see how ones body can heal, given the opportunity. Even with discomfort, the positive wheels are in motion & I keep thinking to myself "paso por paso". Step by step. I hear it in my dads voice because he said this to me many times. I am- after all- an impatient Aries. 

I'm so hoping to feel better in a week, & even though it's hard- I'm so glad to be on my way with this. I do not regret it. I am nervous for the mastectomy, the reconstruction, the healing, & just about everything else along the way~ but feel supremely fortunate to be able to do this now. I'm also so grateful for my family, partner, friends & community. People have been incredibly supportive & generous in so many different ways.

A tricky part of all of this is that I'm out of work for a total of 3-6 months depending on my healing. I have insurance but my deductible is high, as is my out-of-pocket max, & because I'm seeing specialists -each visit is $40. There are many other costs like special tapes, gauze, creams, medicines, special ice packs, sterile items, & then the slew of things that necessary to accommodate the upcoming mastectomy. It's quite stressful & hard to not get upset about not having socialized healthcare every time I'm hit with another bill. This month alone I've spent over $3,000 in health related expenses. I've been saving, but this is still really straining! There's also all the regular bills that remain as well.
Luckily my friends set up a mealtrain where folks have been cooking for us & can donate if so moved. It's been so helpful & is definitely taking some of the edge off. If you'd like to help that's so wonderful & appreciated but not at all expected. Money talk can be quite odd.

If you happen to find this blog entry because you're going down the preventative path & typed in the right keywords & are reading~ know that there are really lovely support groups. This facebook group has been so helpful.
Also know that you're doing the right thing; I confirm!
Just because it's hard doesn't mean it's bad. (and conversely) Just because it's easy doesn't mean it's good. 

When folks say I'm brave & I don't agree, I think "I'm not brave- I'm quite scared of nearly everything here- but I am smart!" Find whatever it takes to feel good about giving yourself a long & healthy life & put one spooky foot in front of the next. That's all we need to do when we're really scared.
I got this. You got this. It's going to be ok.




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