Seven Suzy's for Seven Days of Stage IV Cancer

Bizarro Suzy

Bizarro Suzy finds this absurd.  And the absurdity is delightful.    She laughs at Suzy's surprising reactions and is amazed at what finds herself planning, doing and thinking in this period of surreal.  

Quotes from Bizarro Suzy:

 "The worst thing about the CAT scan was seeing that roll of fat around my middle!  It's a white greasy tire!"  

"I'm going to be soooo popular!  I'll be able to give people unsolicited advice.  I'll be like some sort of oracle reporting from the edge of death."

"I met three people today who would all make good spouses for Francois.  I'm feeling much lighter."

"Won't we all have a good laugh when I come back ALIVE to the 30th Lewis and Clark anniversary?  Imagine the laugh we'll share then!"

Spouse Suzy

I don't think anybody can be as close to my emotional journey as Francois.  Francois delights in Bizarro Suzy (and adds his own share of bizarre.)  He cries with sad Suzy.  He gives angry Suzy just the right balance of kindness and space.   He shares with reflective Suzy, honestly, authentically and courageously.  He trusts warrior Suzy.    And he knows all the other Suzys.  He lets them come and go as they wish, he welcomes them and holds them, loves them and releases them.

Angry Suzy

Angry Suzy is quiet.  She is a thin lining of irritation and frustration, a mirror shadow, stealing light here and concentrating it over there.  Angry Suzy is pretty sure there isn't anything the Stage IV cancer is going to teach her that she couldn't have learned on her own.  She was doing pretty damn well.

Maman Suzy

The night she and Francois informed Paul (9) and Delphine (14) the cancer had come back, a chasm suddenly opened up in the earth and pulled them away.  Maman Suzy watches her children on the other ledge.  Their path and their pain will be the greatest of all.  I can think of nothing more frightening or painful than the prospect of losing your mother, especially as a child.    When I told them, they sobbed -- and yet, I could not embrace them.  My touch burned them. I am the source of their pain.  

Maman Suzy is not the comforting blanket.  She is the protector and the builder.  She creates an infrastructure of people around them to support them and seeks ways to help them shore up their emotional foundation.

Sad Suzy

Sad Suzy cries, and the crying makes her happy.   She smiles through tears and internally tears in laughter.
She is gratitude and loss and heart and connection and friends and family and sunny clear skies.  She floats in and out, spreads wide and then glides away in the breeze.  She harmonizes, tearing when you present an emotion that resonates in the particular minute at that particular moment.  And she collects your tears, laughter, anger, compassion -- she fills her resevoir with love.

Warrior Suzy

Warrior Suzy just does what has to be done.  She isn't bothered by pain or fear.  She researches it.  She schedules it -- chemo, injections, whatever.  She walks, swims,and bikes.  She eats oh so carefully.  She channels the light and prepares a multi-front attack.  But she's not the boss this time around.

Reflective Suzy

No words needed here.

The Blanket of Bummer-ness

"So when do you see your oncologist?  Wednesday?"

Her question stabs with the energy of her hyperdrive emotional state.  My reflex is to shield myself from it.

BFF Ramona Brandes had pushed me into BFF Serena Cruz's car for the ride over the hamburger joint from campus.  She's a wise one, that Ramona.

"Thursday."

"I'm not really worried about the appointment.  I kinda know what I'm in for."

I'm irritated, defensive.  I don't want to talk about this.  I can feel my emotional armor, heavy and cold, but safe and protective.

But then I take a moment.  I look inside.  I breathe.

I remove my plackart and share.

"But in this moment, I'm feeling a general blanket of bummerness descending upon me.  I'm a bit tired.  I'm not looking forward to going back home and walking into the pain that will be lining the house, waiting to trip us up."

And sitting there in the car, next to Serena, the blanket transformed into a fog.  And it evaporated.

Thank you, Ramona, for pushing us off.
Thank you, Serena, for pressing, for asking.
And thank you, dear therapist Hemlata Mistry, for teaching me to open.

A Happy Day

I share and it stings, pierces.  But the vulnerability that wells up and spills over meets my own pain and holds it, an embrace without touching.  It happens each time I disclose my stage IV diagnosis.  

This intimacy, this connection, is so powerful beneath the tears and hugs, that instead of choking up my news through anxiety and fear, I begin to lose my stress response.  I share with love and an openness to the connection with people who care.  People who love.

I thank you for your courage.  I thank you for opening your raw response to me, letting me see.  Thank you for not hiding.

I have discovered that 47 is an age of courage and humility, of love and strength.  Every single person I shared this weekend with at my 25th college reunion met me with this strength, even the many people who had no memory of me from our college days.

We stayed in this space.  We ravished Spinach pesto omelettes and heirloom tomatoes at the restaurant we loved.  We adored Professor Dodds and erupted in disruptive class discussion.  We listened to the alumni blue grass band, ate salmon, drank wine in plastic cups (I passed), rocked the B-52's lobster, played in the carnival, tarot and photo booth, and wondered, finally, after sunset, at the strength, beauty and agility of our young college-age fire dancers.  

Then we sat in that circle, the one that forms when everyone wants to hear and be present and share.  We sipped and nibbled and talked from honest, reflective space.

It didn't matter what I thought about.  I could let my mind wander freely through the possibilities my diagnosis evoked.  And I was happy every single minute today.

OK.  I've changed my mind.  I could have met all of those amazing people, developed those great relationships and grown well without cancer.

Today, embraced by the love of Francois, Janis and Medora in our private corner of the Pho resteraunt, I called and got the news.

Multiple nodes in the lungs.  Largest are 1.3 and 1.4 centimeters.

Multiple areas of bone infiltration.  But one vertebrae is completely filled and the cancer is starting to move into the spinal chord.

Two large lesions on the liver - with another small lesion starting.

Treatment will be aggressive, with chemo and probably a procedure to get that vertebrae solidified.

We talked about how to make the house wheelchair accessible.

Today was filled with intimate laughter -- the kind that swings out of sadness and loops our hearts together. 

I could barely hold the sobs back at Delphine's awards assembly.  Each event will now and forever feel like it could be my last.

So proud of her.  She earned multiple academic awards -- from the Spanish consulat for her performance on their national exam, from President Obama for  her 3-year straight-A record, and she was one of 4 students over 220 to win the Academic Excellence Award.

So pained today -- the kind of pain that can only bleed from love and joy.

Well, shit.

June 17, 2014 -- STAGE IV

NOTE TO SELF:  Don't plan so many activities for the end-of-the-quarter.  You never know when a stage IV cancer diagnosis is going to jump in and tangle things up.

Honestly, I'd always expected this diagnosis to be more disruptive than its been for me in the last 72 hours.  I suppose the shadow of recurrence never left and having it come out into the open just makes it more visible, not more scary.  (I know..scarier.  But I like the parallelism of 'more scary.')

There is so much to catch up on.  

The DOWNERS

• I've been living the aftermath of cancer, even if the disease hasn't been active in my body.  In the last ten years, I've witnessed the cancer deaths of my sister-in-law (2005), my then 11-year-old daughter's friend's father (2011), my own father (2009), our donor-son's mother (2010) and my cousin-in-law (2014).
• I've walked through stress and anxiety related disorders that have threatened the lives of those close to me, children and parents.
• My own PTSD and chemo brain and being generally fucked up.  I have not been the person I would like to be with others who are walking these difficult paths.  Distractability and memory issues combine with emotional repression and avoidance to create a pretty piss poor response to others close to me and in need.

The UPPERS

The DONOR family!

• Janis Hart, Medora Marisseau, Nancy Hart and James Hart  (BIG BIG HEARTS!)   
• Anne and Matt Markell
• L.E. and C.R.

INCREDIBLE LEVELS of:  Healing, Self-Actualization, Growth, Community, Connection, Authenticity, Honesty, Gratitude, Happiness, Love, Friendship, Collegiality, Strength

Details will follow, bit by bit.  I am hoping I will have a lot of time to update you.  But I will leave you, today, with this:

If never getting cancer would have meant never having these positive experiences (especially meeting the donor family),  I am very grateful to cancer.

Happy Flu!

There's a carpet-like pathway leading from me to the bathroom. It's made of towels. There's a big bowl waiting next to the toilet. I'm starting to feel good.

It's hard to explain this, but, well, having this killer stomach flu allows me to feel strength in my body. I can feel my body attacking whatever it is that's bothering it in my gut -- and winning.

Stomach flu is better than even my best post-chemo session, despite all of the great anti-nausea drugs. Now that I'm looking back at all of this, I'm horrified at what my body has been through. My inner ear could hear every fiber in my body recoil from chemo. I could feel each cell gag on the toxins and hopelessly try to spit it all out.

My body would ooze chemo smells.

Now, I'm just sick!

I kid you not, as I was making my offerings to the porcelain God, I was giving THANKS for this experience. I took some pleasure in the effort of my body to heal itself. I would look at the clock and feel delight, knowing that in 12 hours, I would feel so much better.

OK, I am tired. But I'm at day ten past chemo -- and I'm feeling that turn where my body starts getting stronger rather than weaker.

Sober

I've just finished walking my last post-chemo week.

It's been rather sobering.

The tips of my toes and the tips of three fingers on each hand have no feeling.

The nails on my fingers are separating from the skin underneath.

The rest of my eyebrows and eyelashes fell out.

My body is very tired. I can't get up the energy to do my full swimming workout.

I feel like I've just finished a marathon, and I've discovered the finish line is out in the middle of a desert. Now I have to walk out of this desert.

Sigh.

And I'm walking by myself.

I don't feel abandoned -- I feel the presence of my friends and family. But this road I have to walk requires *me* to make keep taking one step after another...forever, really.

Taking care of my lymphedema.
Taking care of my diet.
Taking care of my weight.
Taking my hormone medications.
Taking the vitamin D and other supplements needed for the side effects from the hormone medications.

I know the landscape will change. But it feels like a desert right now, hot, uncomfortable, overwhelmingly large.

So I rebelled and overindulged in a bag of sour cream and onion potato chips.

Barfed it all up.

I honestly don't think I'm feeling sorry for myself. I think I'm mourning. And I really want to try to allow myself time and space to mourn because I don't want to end up in one of those post-treatment depressions other survivors and my oncologist warn me about.

I don't even feel like sighing.

I feel like getting a massage, going to yoga, visiting a beautiful beach.