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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Dying is Healing

Michelle Anderson was the first person to transform my soul, so see me so completely, despite my facades, and laugh with love at my soul.   She was, in many ways, my first love, my best learning from study abroad and undergraduate study.   Holding her soul close to mine again up at her Berghaus retreat this summer and telling her that, completely and directly, felt like a completion of something.

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My graduate school mentor, crush and academic partner, Laurie,  told me this summer how HARD it was for her to write a recommendation for me back in the 90s when I listed her as a reference.  Her feelings for me were so complicated.  Our graduate school friend Gabe laughed and said OH YEAH!!  She admitted that she had a really hard time figuring out something honest and positive to say.

I’ve gained quite a bit of valuable self-knowledge in the last ten years.  I discovered I’m WHITE (gasp) and self-centered (WIDE SURPRISED EYES!).  But I was a bit taken aback at that piece of information .

I think a see a few more trips to visit Laurie in the near future.

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For a while, after my stage IV diagnosis, when old friends wanted to come visit and connect, I was a bit put off.  I wasn’t ready to be present for their journey and their needs.  I was too busy unravelling my own stuff.

But this summer has been a place of identity calm for me.  After shedding and reframing and purging and reframing again, I could sit still a bit.  I could be with people from my previous lives who are near and dear to me.

Being with these people has made me realize I have a need for reconciliation.

Reconciliation isn’t about making amends for me.  It’s more about trying to understand that external Suzy those close to me have experienced (but whom I did not see) and to expose that internal Suzy I assumed my dearest and closest heard, but who never spoke up.   It’s about “I love you’s” and “oh, I get what you mean there…”

With Laurie, there were a couple of images that came forward.

There’s a young person, a professional connection, that my husband and I call “puppy.”    Puppy  is young, enthusiastic, amazed by her own ideas and skills, and stepping with her big muddy puppy paws all over everyone and everything.

Now, let’s be clear.  Puppy is probably one of the most talented practitioners and thinkers I have ever met.  Puppy is AMAZING and VALUABLE.   But Puppy acts like every thing Puppy learns is NEW to EVERYONE.   Puppy annoys me because Puppy makes me feel old and irrelevant with her sense of responsibility for everything and everyone around her.  Puppy makes me invisible.

Honestly, though?   Puppy annoys me because I’ve been puppy.

Worse than puppy is EGO.  Ego is a really really nice guy.   Ego is an extrovert and kind.  Ego goes out of his way to get shy people to participate in the conversation and is thoughtful about how he can help people feel better about themselves.  Ego is good at talking and at framing other people’s perspectives.  So people feel heard when Ego talks.  But Ego also often gets credit for those ideas he reframes.  And Ego, a verbal processor, honestly feels EVERYONE’S ah-hah was at HIS framing, and therefore HIS idea.  Ego doesn’t acknowledge or even understand that other people HAD the idea .  He doesn’t grasp that even as he is speaking they have a more PRECISE sense of the idea than he has.  When Ego gets the credit, he grows in confidence and gets even better at being good and kind  and helping others.  

Ego is water torture for highly perceptive, deep thinking introverts,  people who see the world so complexly it doesn’t fit into simple metaphors or analogies.   Ego leaves a raw, sore wound with his subtle stealing of light, attention, admiration and gratitude.

I have close friends who have been wounded by Ego.  I hate him.  I would like to put his shiny happy face on a bullseye and throw darts at his worry-wrinkle free brow.

Now I know I have been (am still often) Ego.  And I hate what that external Ego has done to people I love.

But I also love being Ego.  I feel powerful and important.  I get positive attention and concrete rewards.

I think that conflict of interest, my own ego addiction, and the potential of shame in recognizing what Ego-Suzy has done to others, might have kept me from working on this reconciliation stuff right now.  But then, maybe it’s also a turning 50 developmental thing.

In general, though, here’s what I know.  With stage IV cancer, people are ALWAYS nice to me.  They are ALWAYS forgiving.   Honesty and self-acceptance comes more easily when you know you are already forgiven.  And that kindness and compassion is contagious.  I feel it for others.  Ifeel it for myself.

Maybe it is only because I have this freedom to forgive myself and be kind to myself that I am able to see and acknowledge these parts of me.

Maybe, ironically, dying is healing me.

 

Vampire Eyesight

Sometimes we have to stay in the dark.

About a week after switching from Xeloda to Halaven, my eyes started becoming so sensitive that I would wear sunglasses, inside, in an unlit room where no sunlight penetrated.

I became a VAMPIRE!  Sunlight would KILL ME.

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I would only allow myself to drive an mile or so, because I was squinting behind sunglasses with the sunvisor down and swearing internally.

So I made an appointment with my eye doctor and her colleague  found about 20-30 eyelashes POINTING THE WRONG WAY and SCRATCHING MY CORNEAS!!

I need a bigger font here for the OMG!!!!!!  There is a stress response to having bright lights shone into sensitive eyes AND pincers coming at you to pluck out eyelashes.

HOLY@#$*INGGOD I will SPILL ALL STATE SECRETS if you torture me.  I KNOW that now.

Overall, though, side effects are BETTER on Halaven than they were on Xeloda.  I can hike.  I can swim.  I can wear BIG GIRL PANTIES.  I rarely need naps!

And so I am filled with…IMPATIENCE!    I’m capable of faster and more.  So I have things I want to DO! Fix up the kitchen.  Clean.  Organize.  Prepare for GOING BACK TO WORK!!!

Now, I do have to admit that I have missed energized, impatient, self-absorbed Suzy a bit.   She’s been a big part of my life.

I remember complaining to my first therapist, back in 2002, that Francois was boring.  I told her a story of how he prattled on once about what a police officer’s life must be like — no philosophizing, no ethical argument, no interesting academic spin….

My therapist suggested I ask him questions about his thoughts instead of looking for the place to insert my debate/philosophy/thought process.

Uh, what?

This is a good change cancer has brought me.  And maybe age, too.  Some of it is just good aging that we all go through.

I am no longer the future.   You are.  My children are.  My spouse is.  My friends.  My family.  Suddenly YOU are more interesting than anything else in the world to me.

What a gift to me.