Being brave.

If you put shame in a petri dish, it needs three ingredients to grow exponentially: secrecy, silence, and judgement. If you put the same amount of shame in the petri dish and douse it with empathy, it can't survive. – Brene Brown

It's been a while since I've written because some of how I've been thinking and feeling is not pleasant. I've been a bit sad, and a little scared, and a more angry than I'd have imagined I might be.

I've been ashamed of my feelings then been irritated by my shame. Throughout the process of feeling these things, I'm praying and trusting God. But there's this belief deep inside of me – a belief I don't remember anyone verbalizing or ever applying to anyone else – a belief that if I'm trusting God and believe He is who and what He claims to be, then I wouldn't be feeling these things. Therefore my emotions must be an indicator that I'm not trusting. Which irritates me all over again and makes me defensive because this has been some of the deepest trust and most honest communication with Him that I've ever had.

Then, added to all of that, I feel like a fraud sometimes, like I don't deserve the prayers and concern and well-wishes.
Because I didn't have to have chemo.
Because I'm not in danger of dying in the near future.
Because some women are never the same after surgery and radiation and I've physically recovered well from both for the most part.
Because I don't have a definitive, easy to explain response when people ask.
Because sometimes people know someone else that's had breast cancer or genetic testing and their knowledge of that specific situation makes them believe that's just how it is for everyone.



So, in an effort to work through some things I've done work work in my art journal though most of it has been backgrounds, basically settings for something to be written or created on top of it. It's visually stimulating and more about the creativity without as much mental processing. I am processing (see previous paragraphs) but haven't figured out how to put those immense, sometimes conflicting thoughts and feelings down on paper.


Part of my frustration is that I don't fit into any one category with my breast cancer diagnosis and all that's followed. There are so many kinds of breast cancer and mine was one that is usually not as dangerous. But because of my age when something first showed up on a mammogram (36), and because my breast cancer was a mix of the mid and highest grades for its type, and because of my family history of breast and ovarian cancer on both sides (which I had no idea of until all this started) and now this slightly complicated BRCA1 result*, I don't fit into any one group of... I don't know, group of what? I have some imaginary category in my head that would characterize me in some way to explain and somehow affirm my feelings of fear, anger, anxiety and therefore excuse my (perceived) lack of character and fortitude?

I realize I assumed most people in a life-altering situation like this have a "map" of some sort – here's your diagnosis, here's your test result, those things equal up to this treatment plan and here's what you tell people when they ask. 1 + 1 = 2.



Instead of 1 + 1 = 2, I imagine my situation's formula looks like an algebra problem with an answer so incorrect that is isn't even math, like:

(5 bananas divided by the genus and species of the Arctic Fox) + the color blue = Elizabethan England in late summer.

That's what's up with the map backgrounds in the photo above. Instead of one map I feel like I've been given bits and pieces of different types of maps from different places and time periods and even though I recognize some of them, I can't figure out where I am or where I'm headed because none of them go together.

Why am I writing this? Partially because it feels like a confession and everyone can shake their heads at me and stop praying and worrying and write me off as a drama queen (which I don't think will happen but in my worst moments there's an inner voice that tells me it's true.)

To be clear, no one has called me a faker. No one is making light of my situation or the process of figuring out the best way to deal with my past diagnosis and family history and working out how to proceed. It just seems to be some bizarre inborn feeling of "if I'm not bleeding, passing out, or immobilized than I'm probably just being a cry-baby."

So really I believe I'm writing this out because, even thought it feels vulnerable and uncomfortable to admit to, it might be found by someone working out their own confusion or anxiety or anger in the midst of trusting that God is who He says He is. And maybe by finding it they won't feel so lonely as they walk through it.

For now, my next appointment is Friday for a pre-surgical ultrasound before my ovaries and fallopian tubes are removed April 21. I see a plastic surgeon on Monday to discuss reconstructive options for double mastectomy. Then May 25 I have my next MRI, mammograms, and appointment with breast surgeon.

*My geneticist and the researcher who is charge of the study both call this variant "suspicious" and expect it to be reclassified as pathogenic in the next few years. Geneticist recommended it be considered an additional risk factor with regard to ovarian cancer because there's no reliable ovarian cancer screening. Mine is only the second time on record that this variant has been seen. The other is in a family in Germany in which each person with the variant also had breast and/or ovarian cancer (three of my four grandparents are/were German.) My extended family is taking part in the study as well. 

My surgeon is supporting double mastectomy due to my past breast cancer diagnosis at a younger age than normally seen and my family history on both sides (my surgeon *is* taking geneticist's thoughts into consideration, I promise – my surgeon is good and we trust her – but insurance varies on breast cancer treatments due to a variant until that variant has been proven to be pathogenic within a certain percentage of people who have it. And my family history has been an issue regardless of the BRCA1 result so ultimately it wouldn't matter anyway, I'd still be here.) 




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