There’s a point in survivorship when you realize you ARE your own “panel of experts.”
That you cannot outsource that charge- each health care provider has their own lens and expertise- and only YOU see and feel the whole picture. And YOU are the one who most cares about your success.
I understood that mid-way through chemo, which was a year and a half ago. And it helped me know how to stay ahead of the curve, what to advocate for, and when to trust my instincts.
A lot has evolved since then. I had and recovered from a mastectomy. I had and recovered from Bell’s Palsy. I started endocrine therapy (taking aromatase inhibitors to block estrogen function). I learned chemo and other medications have impacted my bone density to osteopenia and have exacerbated my genetic risk for heart disease.
So the last few months have been hard. I’m in constant physical pain (joints and back) and what had seemed like an upwards recovery trend has stalled or even taken a downward dive. I am a frustrated athlete, and I’m so worried about my body.
But back to this idea of a panel of experts. I’ve been feeling like it needs a refresh. Like I need a refresh, I need to remember what I stand for. I’ve been a bit rudderless, not tuned into my instincts- maybe assuming this would get back to an upwards trend as long as I just tried harder, just got more motivated. So I’ve pulled more levers; increasing swimming, adding cold plunge, focusing on plant based food, tweaking my supplements.
And yet still. It hasn’t changed the physical pain or the mental gymnastics of survivorship.
Then finally, this week, I was able to articulate the core of it. My biggest concern of early survivorship is not a fear of recurrence. It’s a fear that the medications I’m taking to prevent recurrence are decimating my body in other more acute ways. This puts me in a constant state of disconnect; what I’m doing (taking these anti-estrogen meds to prevent recurrence) is at odds with what I’m worried about (the long term damage to my body through estrogen deprivation).
As someone recently shared with me, “survivorship is a constant period of adjustment.” It won’t be a downward slope forever; it comes in waves that build and crest. And all you can do is deal with the wave in front of you.
So that’s my plan now. The wave in front of me is now this: take stake of all the competing factors at the current moment, my instincts, the science available- and make the best decision for now. I may change my mind later. I may make a different choice in a year. But for now I’m taking the next best step. Because I AM my own panel of experts.
Ocean Beach on a moody day- I love when the weather matches my temperament :-)