Scans, Pain and Plans

Tuesday  –   2 MRI’s to get a look at the most threatening bone mets, especially that vertebrae.

Wednesday Morning —  A PET scan from skull to thigh to get a more detailed look at the mets.   I think they’ll peek in my brain.  This scan seems very fascinating.   I promise to update everyone once I get back.  No exercise 48 hours before the scan.  No carbs 24 hours before.  No food 12 hours before.  And no mental stimulation right before the test — including no reading and no chatting with friends! I think they might be trying to reboot me?  😛   I think they will look at my brain, though.  Kinda scary thought there, but I’m not obsessing.

Wednesday  Afternoon –Fulvestrant infusion to block estrogen uptake and Zoledronic Acid in the butt to keep bones from losing calcium, thus crowding out cancer.

Thursday – Liver biopsy   Here is where we all hope for that old 2008 cancer and not some new variety.  Apparently I get happy drugs for this procedure.

Pain —  Seeing the bone scans and knowing my pain corresponded to cancer changed my experience of my body’s pain.  Suddenly the aches and pains I associated with getting old and out of shape became sirens announcing my mortality.   But then, I swear to you, after seeing my oncologist my pain intensified.  My rib started burning – and then suddenly quieted.  Opening heavy doors or lifting grocery bags made my back scream for a couple of days — and now…nothing.  Today, my chest plate is screaming and burning.

Here is what I found that gives me hope:

“All hormonal therapies can cause a “flare” reaction shortly after they are started. This is a temporary increase of pain or increased calcium levels in the blood as the tumor reacts to being starved of what it needs to grow. Although uncomfortable, the flare reaction is a sign that the treatment is working. About two out of 10 women have this flare reaction, which pain medicines can help relieve. Symptoms usually occur within the first month of treatment and go away within two months.”  — from http://breastcancer.org 

I started hormone therapy the day I saw my oncologist.  
DIE you sucker cancer cells — DIE!  Brrwwaaahahhhahhaaa   (evil Suzy laugh)



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Gratitude has flavors.

Gratitude can be steely and cold, a defense built with overtones of superiority and pity.
“We are so blessed!  (Imagine what it would be like to be poor _________________ )”
Tangled in entitlement this gratitude pulls tight against bitterness.  Snaps harshly on the palate.
“Why me?  (Why not _____?)”
It is often fear’s mask.   A feeling of relief and terror,  tight white fingers keeping your body from falling off the ledge.  Gratitude carries a full bodied taste, power and strength.  (I’m so grateful I didn’t die!)
Tears and pain pour into the gratitude of vulnerablity.  A beseeching, delicate white sauce that can get sticky, sour and curdle, or glide into a heavenly pairing with a firm, delicate soul.  (“Thank you for not killing me – Stockholm Syndrome-ish” or “Thank you for not leaving me yet I will break when you do I can’t live without you I love you so much”)
Gratitude is sparkling birthday candles and sprinkles on donuts.   It’s a toddler, pointing at everything she recognizes, sharing her glee at the mutual recognition and the novelty.
A dog!
A cat!
Maman!
Papa!
A bird!
A blue sky!
The smell of rain on pavement in the summer.
The taste of pebbles in your mouth.
The fit of my chin over the top back curve of my 9-year old’s head.
Chocolate and coffee at sunrise.
And love.  There’s the gratitude of love.  
So here’s the boring realization.  It’s so obvious it sounds cliche.  But I need to remind myself often.  I have to accept all flavors of all emotions.  Resisting or judging them only pushes them out of my line of vision, it blinds me, it pushes the real Suzy back and builds something artificial in her place.
Gratitude is not about not experiencing other emotions.  It’s not about being strong.  It’s not even always about love.  
(I am really grateful for my my coffee and my awesome FEMARA this morning!  No dry eyes, no drowsiness and …. wait a minute.  What day is today?  Am I supposed to pick up Delphine somewhere?)
Hugs to you.
Suzy

Scrambled Memory and Taffy Pulls

Femara scrambles my radio frequencies.
The intuitive walk-search, you know, when you walk around the house looking for your keys but you don’t really retrace your steps, you just let your body wander until “Oh! THERE they are!”
It’s broken.  Round and round she goes, where she stops, nobody knows.  
How about the grocery store for a new bag of coffee?  Leave the bags of missing coffee for another day.   If 30-minutes of circling the kitchen doesn’t produce results, it’s time to leave it and move on.
After working all day in my office,  I’m trying to figure out if I am coming in to work tomorrow.  I pull and pull — It’s taffy, immersed below my consciousness. 
Today issss…  Today issss…  Today.    Today isss….
Take a break.  Breath.  Relax.
Today isss….  Today issss…  
Walk around a bit.
Today isss…    
FRIDAY!  
It pops free.
FRIDAY!  Today is Friday.  I’m not coming in tomorrow.
Delphine is spending the night tonight at ….
Her name is……   Her name issss…..
Her name is…
Her name is….
Sigh.
I head out to pick up Delphine from her first day at work.
20 minutes later, I try again.  Her name is….
Her name is….
SOPHIE!  
I finally dislodge it, only after I carefully visualize the faces of each of Delphine’s friends, mentally name them, and then finally work my way to a name for Sophie’s face.
The distractability has most certainly always been there.
And there is definitely the menopause-y short term memory and name recall issues I’ve gotten used to.
And, yes, I know that when I’m stressed, my processing speed can now roll right into a stall.
But this is different.    I feel vindicated — absolved of that period where I couldn’t keep three things in my mind at once.  When my favorite colleague for over ten years sat next to me — and her name would not come.  When I would leave the campus to pick up a preschooler in order take him to his afternoon daycare, only to find myself at home, wondering why I drove there.
The hormone drugs really fuck with me.
I’m not ungrateful.  I’m just sayin’.
And if you try to tell me about your memory issues or how we all get these episodes as we get older or your own struggle with menopause in response to my sharing, I’m going to be holding back a fuck you and smiling tightly.
Time to try small meals and frequent exercise.
And maybe a nap.

Chemo Horizon Pushed Back?

My oncologist, Dr. Wahl, explains that if my cancer is the same cancer that was diagnosed in 8/2008, there’s a strong chance I will not need to have chemo for another 3-6 years.   (If the biopsy scheduled for next week doesn’t confirm this, of course, then plans will change.)

She explained that chemo, for an ER+ cancer, is usually only used when vital life functions are at risk.  Despite the spread to my liver, lungs and bones, my lung and liver function still seem strong.

If all goes well and the cancer is the cancer from 2008 — and it responds to hormonal treatment, I could live for years with a daily pill, a few monthly shots in the butt, and a few IV infusions each month.

So here is what I understand so far.

CANCER FIGHTING — I do already know I have some of these details wrong.  So there will be corrections!

  1. Hormone Treatment to Block Estrogen Production – letrozole (FEMARA) pill once a day
  2. Hormone Treatment to Block Estrogen Uptake — Zometa via IV (30 minutes) 3x first month, then bi-monthly
  3. Create the inhospitable bone environment for cancer growth by getting shots in the butt — 2 shots twice a month of Faslodex. 
BONE HEALING — Use MRI and PET scan to determine seriousness of growths in bone, especially back.  Then, as appropriate, schedule radiation, neurological surgeon or nothing.
WATCHING —  Use cancer markers in blood to watch if tumors seem to be getting better or worse.  Repeat scans in 3 months.  
Dr. Wahl made sure we still understand that Stage IV is incurable — but she said there are a lot of new targeted therapies coming down the pike.  She said it’s not unreasonable to hope for ten years — and in ten years, there could be many other approaches available.  
I’m feeling an open road and some clear skies ahead!

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.