Today I’m struggling with relevancy. The relevancy of what I
do as well as the relevancy of who I am.
Beyond the emotional and logistical rollercoaster that is
launching children in the middle of a global pandemic with missed milestones
and unmet expectations; and beyond the likely normal “who am I after nearly two
decades of mothering two humans that are now outgrowing me?” the struggle around
what I do for a living has me flailing a little. A lot.
I am an advocate. A patient advocate. A community advocate. A
research advocate. A policy advocate. Sometimes I’m an independent advocate;
sometimes I’m attached to a non-profit organization; sometimes I’m employed by
a company that I feel shares the ethos of truly making a difference, not just
making a dollar.
Sometimes I have a fancy title; sometimes I’m just ‘patient advocate’.
Sometimes I get paid for the value I bring; sometimes it’s a volunteer effort.
Regardless, I’m always me and bringing my whole self to the table. I try and use
my voice to share information that can become knowledge and to build bridges
between people, resources and opportunities. And I help others find their
voices and build the confidence to use them. I connect people to people because
I believe that we can always learn from each other and are fundamentally stronger
in every way, shape and form, together.
I am perpetually grateful that my family and my situation affords
me the luxury of doing what I love to do and yet…
I am effing struggling.
How am I changing the narrative? I left my career after my
diagnosis because there was a gap (an actual abyss!) in cancer care. The world
was talking about Personalized Medicine but had forgotten to include the ‘person’
in the conversation. Over 1.5M people were being diagnosed annually with
cancer, in the US alone, and we weren’t learning what we could from their
experiences because data was being siloed and stories of real people and real
experiences were getting lost in the shuffle.
I wanted to change that.
I wanted to make a difference.
And, while I realize making a difference comes in all forms,
I don’t feel I’ve changed the narrative. Now we have over 1.7M people being
diagnosed annually with a cancer in the US. People are still dying. The
disparities in cancer care and outcomes remain stark. People are still calling during
that ‘oh shit’ moment after diagnosis; people are still experiencing financial
toxicity; people are still suffering through treatments that target cancer but
don’t consider the impact to the person’s whole self.
It’s ALL the things.
But mostly it’s the premature death. And mostly it’s the
fact that despite the efforts of myself, hundreds of advocates and thousands of
scientists, people are still suffering from cancers that we cannot control, never
mind prevent.
And, maybe after that, it is the narrative that cancer is
something to be ‘beaten’ when, in reality, cancer continues to fester and grow
inside most all of the 17M survivors, either literally with metastases and
progression or figuratively through the physical and emotional after “effucks”
of diagnosis and treatment.
That’s it. That’s the punchline. I am struggling.
I don’t need hugs or love or affirmation. I need to find my
place. I need to document my goals and objectives so that when I have these
crises of faith in what I’m doing, I can show progress. I’m sure it’s there. I
just can’t see it right now.
It may be the pandemic. It may be #Pinktober. It may be what feels like a rash of new diagnoses among my previously non-cancer friends. It may be compounded by kids in a launch phase. It may be the bizarre extended family drama. It may be the even more bizarre support group drama. It may be the beyond the pale bizarre political drama.
It may just be a really bad day.
But
it’s here. If I’m honest, it’s been here for months and I’m finally remembering
(AGAIN) that a bit of putting down my thoughts helps me get it out.
Once it’s out I can name it, look at it and begin to address
it.
As I’ve word vomited this post, Lisa B Adams has popped into
my head. She was the first individual I knew who was living while dying with metastatic
breast cancer. I found her posts a stark picture of the reality I wanted to
help change and yet I found her perspective on the world uplifting and
comforting.
Today I’ll choose to focus on her words. She shared them
frequently and they became a mantra for many of us in the advocacy community:
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