Breast cancer updates: life between surgeries

Just updating for people following along, and for future breast-cancer patients who wonder how this whole process goes. 

I'm doing okay. I'm still lop-sided. For y'all just catching up, I had a bilateral mastectomy in October. At that time they placed tissue expanders on my chest -- basically spacers for future implants. The tissue expanders are filled with a saline solution bit by bit to stretch the skin over a few months before having the final phase of reconstruction. Unfortunately there is a shockingly high rate of infection (10-15%), and I was one of those unfortunates. 

This means that I currently have a left breast that is a rounded tissue expander, just awaiting to be swapped out for an implant. But my right "breast" has been removed completely, including the tissue expander, and I was sewed up flat -- concave even. 

There's a surprising amount of scar tissue around the flat breast, and massaging it is very upsetting. The issues are in the tissues, as hippie-folks say, and I sure have had a lot of trauma in the past few years. Massaging my scar tissue often leads to tears, both because it's just incredibly upsetting to have been mutilated, and because it's just a reminder of all I've been through.

I started physical therapy, which has been wonderful, albeit a little terrifying in COVID times. I was fortunate to find a provider who has been doing telehealth visits for everyone except me. She's focused on tissue massage and gentle stretches, with the end goal of me being able to play my instruments comfortably again.

My primary goal had always been to be aggressive in the cancer surgery, without worry about usage of my arms later. Now that my body is healthy again, I'm working on the recovery. My shoulder and forearms are tight, as well as my chest muscles. Playing Bach is okay, but playing Gershwin is painful.

I'm trying to just be grateful that I don't have to have chemo or radiation, and not be upset about my arms. But it's still upsetting.

Also interesting: my voice has lowered four half-steps. I've been googling to see if that's a common side effect of my estrogen-suppressor drugs, but there's not much evidence of it. My brain tells me that if you suppress estrogen, however, than it makes perfect sense that your voice would get deeper -- but that most people wouldn't notice this. It's only the extremes of my vocal range that are affected, and most people would never pay attention to what actual notes they sing. For me, now I never used to be able to sing below an F below middle C, but I can easily hit a Db now and even a C if I don't care about timbre. The high end of my range -- I used to be able to sing a High C easily -- is now limited to G5. I've had to change the keys of songs I wrote myself, and that feels weird.

Next steps for me are: switching plastic surgeons. I don't feel like my current plastic surgeon has been listening to me, and I'm frustrated that he didn't catch my infection in time to save me two future surgeries, even when I told him the breast was warm and sensitive to touch. Now when I go to see him, I feel like I'm visiting someone who has violated me. That's just not cool when you're already vulnerable, so I would like to find someone who empowers me rather than diminishes me. It took me six weeks to get a new patient consult with another surgeno though. I see this surgeon tomorrow, and I'mr eady to take charge of my health again and get things rolling. 

Living in this in-between time is taking its toll. I know we'd all like to be on the other side of 2020, but for now, we must make the most of what we have. It's not a lesson I needed, but 2020 hasn't felt like much of a change for me. I've been stuck in a weird place ever since my mom got her terminal diagnosis. This is just an extension of that: being unable to make plans, sitting home, hoping things will be okay, but acknowledging that we have absolutely no control over things.

Thanks for following along. Here are some helpful links:

Tip Jars: https://linktr.ee/brigidkaelin
Amazon storefront: Some products I like and put together in one place. Home recording & Cancer supplies.
Create your own Amazon registry here. It doesn't have to be for a wedding; I used one when people wanted to get me things to help with my cancer treatment.


2 comments

  1. Love you. So sorry you are dealing with this and I am praying that it will be tolerable as you go through this.

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    1. Thank you so much, Mary. Merry Christmas to you and yours -- much love right back to you!

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