Attitude, Anxiety and Patient Advocacy

Novartis reached out again and yes, Francois and I are OFF again to their Advanced Breast Cancer Summit (#AdvancedBC #Sponsored).

This will be Novartis’s fourth summit and my third.  Every summit has been this incredible opportunity to connect with smart, strong, reflective women living with and writing about metastatic breast cancer.  I learn from these women’s actions, their minds and their soul growth.  I am so grateful to Novartis for inviting me to these summits and to the other women invited for attending.  These meetings and these women transform me.
So Francois (my spouse) asked me if  I think all of the connection and research I have done has changed my future,  improved my disease outlook.

I really don’t think it has improved my disease outlook.  My oncologist is very good.  My oncology team is very good.  I haven’t seen anything in my course of treatment that would have been or has been or would be different because of my own research and my connections to the stage IV community.

But understanding my disease, my choices, …my context, allows me a psychological peace as well as a space for growth.  I get to be this growing, learning, developing individual in this cancer world and it’s an interesting place and person to be.

At the previous Novartis Advanced Breast Cancer Blogger Summits, we’ve spent a lot of time discussing what women can do for themselves if they educate themselves.  How women can advocate for themselves and change their treatment options and, possibly, outcomes.   Novartis and other advanced breast cancer researchers and advocates are really interested, at the moment, in the dynamics of treatment conversations that surround a survivor/thriver of Advanced Breast Cancer.  How can we help women be better advocates for themselves?

Now, I have a body with a default status of “happy.”    My body likes to be energized and focused.  I used to be addicted to stress hormones and could pull all-nighters anytime I had a deadline I was passionate about.  But my body also has a default status of happy.  Talk therapy really works for me.  I can learn about myself and how to reframe and end up HAPPIER.  Immediately HAPPIER.

Despite this ability to reframe and adapt, to adjust to new normals,  I cannot imagine my body and self, under stress, reaching out to LEAD a conversation with my oncologist at times of transition or ambiguity.  I can’t imagine myself being in that leadership position so many of my fellow bloggers have had to take with their own medical care.  Just thinking about the emotional and physiological energy required wears me out!

And I’m pretty sure I’m among the 20% of White people who have the “happy gene” that makes this physiological adaptability and happiness so possible.

Now according to the New York Times article above, if you are from Nigeria, you are much more likely to have the happy gene.  But most of us, apparently, according to research, do NOT have this happy gene.  Most of us have bodies who are more likely to take information and create an anxious obsession over it rather than allow us to talk ourselves through to a happier, more peaceful place.

Wow.  Now imagine all of these stage IV survivors meeting weekly with their oncology teams and discussing an illness that will result in their death.  And imagine a large percentage of these survivors not feeling comfortable with their oncologist.

Here’s the thing.  MOST of us feel uncomfortable with our oncologists.  This is the expert with the scary knowledge.  It’s the person who might understand and see things about our future and our mortality that even our non-anxiety prone bodies are not ready to deal with yet.

Even we happy survivors are a mess.   We’re over expressing or over-repressing or heck, both at the same time!  We’re obsessed with knowing or with not knowing.  And we’re in a different place each visit.  Each day.  Some days, each minute.  (And then they put us on steriods!!)   So what we need from the oncology TEAM is IMMENSE.  If I did not have the experience of my amazing oncology team here at Swedish Cancer Institute in Issaquah WA, I would say  what we need is IMPOSSIBLE.  But they do it here — and I’ll be blogging about that.

My team does such a uniformly good job, that when I heard a new assistant make a common, kindly intentioned, yet very-unwelcome-by-stage-4-survivors comment, it was incredibly and gratefully out of place.

Here is what the new assistant said: “You have such a positive attitude!  I always tell my patients that treatment goes so much better if you just keep a positive attitude.”

Even for those of us with the happy gene, that’s a hard expectation to live up to.  It’s fucking stage IV cancer and it’s stealing my life.

But I know what she’s getting at.   We all do have some agency in how we live with our cancers.

To understand this agency, though, we need to teach patients about their bodies and the spectrums of stress responses natural to it.   We can teach them how to know that MOST bodies will only allow you to have a limited impact on those natural spectrums.  They need to learn to accept themselves and their responses and nurture themselves, find comfort and solace where they can.    We need to separate, in our language as peer-mentors and medical professionals, the self  response and the body response or we end up implying women can simply force their attitude to a happier, more positive journey.  Worse, if they can’t, it’s their fault.

And we need to talk more openly and freely about medical options (including medical majirauna) for supporting the majority of these bodies in this journey.

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