Survivor Thrill

Ever since my stormy weekend, I have been feeling strong, beautiful, healthy, hopeful and radiant.  My Afinitor finally arrived and instead of horrible mouth blisters and skin sores, I feel AWESOME.  No bone met pain, no lung cloudiness, no liver tenderness…   My body feels well oiled and supple.  I can’t even imagine illness today.

So I have had a hard time writing. 

Because, while feeling this good,  I have been receiving beautiful, loving gifts from friends in the mail — flowers from a respected and admired colleague, Rebecca Baldwin, a beautiful Japanese tea cup from my 8th grade teacher and world changing social activist Misa Joo, a matching kimono (arriving on the same day by chance!) from my heart-soul-sister-cousin Kerstin Peterson — and gourmet salts and music and a palm reading kit.

At work my colleagues are nurturing, kind, supportive and attentive. 

So I didn’t know how to write about this.     Is it OK to feel so good and get so much positive attention?  It’s like every day is my birthday!    Am I feeling guilty?  Survivor’s guilt?

No.  Actually, I am not feeling guilty. 

I am feeling THRILLED!  Some week’s you all make having cancer really really FUN.

And I’ve finally decided that that’s OK. 

Much love to you all –
Suzy

Advertisements

Fuck You’s and Flowers

Emotions are so slippery now.    They can blow in and knock me over without warning.  Laughter rises easily and bubbles over when Paul and I talk about the speed with which farting can propel you in space.  A “fuck you” is lobbed almost lazily across the dinner table towards my teen.
Emotions used to rise slowly and steadily for me,  unnoticed until I was immersed and suffocating beneath the tide.  
The emotion that overwhelmed me at Friday’s retreat was a tsunami.  I felt the space of emptiness and confusion opening just before it hit.  
Am I supposed to be here?  Do I even matter here?  Will I feel this afternoon is time well spent?  Is the goal feasible?  Am I committed to the goal?  Should I be out enjoying this beautiful weather?
The questions cross all of our minds.  
I had never noticed before the energy it takes to suspend our concerns and fatigue with each other (and with meetings, in general).  We are like aircraft controllers, keeping our worries in a holding pattern, fueling them in the air with our limited patience.
  
What if the new treatment makes my skin so dry and sensitive that it will be too difficult to make love?   What if I feel nauseated or fatigued and don’t want to focus on my kids?  Do I read enough to my son?  Should I be reading right now to my son?  Should I be making love to my husband?  Should I be working more to engage with my ever-more-distant-daughter?  
These thoughts are heavy orbiting debris, falling, flaming, down, carving craters in my heart.
I have made the wrong decision.  I shouldn’t be here.
I push it away.  I listen.  I try to find some gratitude to hang on to.
Each of the colleagues present is so valuable.  These are my world-changing peers, my-let’s-not-be-satisfied-until-the-world-is-just peers.   These are my let’s redesign-the-whole-dang-system-if-we-need-to heart driven peers.
And they are driving me fucking nuts.  At some point, as a group, we got the idealism tangled up briefly in that performance-ego-stroking game where we cite theorists and nod knowingly.
Anyone who knows me also knows that I am definitely the pot calling the kettle black here.  I have definitely been known for getting high and righteous on acts of academic performance.  So there is no blame game here.
But today, for me, the game-triggered rumblings of doubt and deathly anxiety coalesce into a pretty strong magnitude.  
Shaky, I try to focus on our motivation.  Isn’t this, as my colleague from psyshology Deepti pointed out, about ensuring our international speakers of English are supported in a way that allows them to use language confidently?  Isn’t it about curtailing the language shaming that can go on in some classrooms?  Is there something concrete we can do towards this goal in two quarters?  
The castles we’ve spun in the air so far with our goal setting and brainstorming seem so out of reach.
Yes, BUT.
That’s how we talk in academia.  It’s never just yes.  It’s always YES BUT.  Or WELL…    We are trained to add insight, adjust perspective, throw in a little twist of critique.  
Mental masturbation.
Unfortunately, the woman who offers this at this point, is someone who tries so hard, every minute, to not be academically lewd.  She reflects, meditates, questions, listens, absorbs, reads, thinks, reflects, incorporates, and acts according to all of this.  Watching the discipline and sincerity with which she does this exhausts me.
And it’s her “And also…”  
“I agree with everything you’ve said, ” I respond. “I know the ideal is valuable and I also need to say this emotion rising up isn’t related to anything or anyone here…”
“I am emotional, as well, for reasons not related to what is here,” she (empathizes?)
“I AM GOING TO BE DEAD BEFORE ANY PROGRESS IS MADE TOWARDS THESE IDEALS.”
I am crying now.
I’m sorry, I have to go.  I have to go and take care of myself.  I don’t know where this is coming from.
(I have no idea what I am going to say next.  I feel dangerous.)
A nod of sympathy from the meeting coordinator and I’m running out the door.  My colleagues’ gazes are planted on the desk in front of them, some with sadness, others with discomfort.  
I jump into my mini-van and start driving away…  My most-sincere colleague is running after me.  She waves at me to stop – to come back.  I use my hand to brush her away, mouthing…
NNNNNNNNOOOOOOOOOOOOOOOoooooOOooooo!  
In slow motion.
I have never left a professional event in a tantrum before.  I have witnessed others do so.  I think the behavior is unprofessional and inappropriate.  I apologized to my peers and they have been gracious in their acceptance of my apology.

When I got home, I found the most spectacular bouquet of flowers I have ever received.  A colleague from my early days at the college, Rebecca Baldwin, had sent them to me, out of the blue.  She is another incredibly disciplined, thoughtful, integrated and intentional person who taught me that economics is all about studying how people value things, emotions, experiences, events, others…
I was overwhelmed by those flowers.  What a perfect moment.
I think my most-sincere-colleague and I might need some Fuck You’s and Flowers to get past this.

The Story of the Traveling Leather Lymphadema Gloves

It’s been emotionally cloudy lately, with wind gusts, occasional thunder storms, sun breaks and rain. 

It’s exhausting.

And keeping my emotional umbrella up feels a bit like fighting off a sadness-cold.  The sadness is minor, benign, nagging and irritating — and seems to hang on forever.

I get to ring the all-done bell today.  It’s a big loud muster bell on the wall for patients to ring when they finish their radiation treatments.  It’s a thing, apparently. 

I’m a good sport.  So I push through my emotional congestion, muster some bravado and really pull off a big pealing

{{BONG!!}}

Clears the sinuses a bit, that does!

The cheers and the smiles from the medical staff and patients touring the halls buoy me.

But there is a moment of pure transformation that happens right as I am about to leave.    Emotional Hawaii.

I don’t if she’s coming from or going to her radiation therapy, but she walks with the slightly shocked look of the-first-time-through.    Her breast cancer diagnosis is advertised by the lymphedema wrap she wears on her arm. 

Oh!  I wore that!  I say.  Hated it.  What a pain, right?

And look at me now!  I show her my muscled, lean arm, completely free of any swelling.

We talked about the bandaging, the wrapping and dealing with the dirty bandages and wraps.

I reminisced about my beautiful leather fingerless gloves, hand-made by a Pike Market artist and purchased for me by my beautiful soul-sister cousin Kerstin.  They are spunky, beautiful, and practical.  With these gloves I was suddenly a hip woman with attitude — not a survivor or a patient or a victim.

Give me your address!  I’m going to give them to you.

She protests a bit, offers money — But we realize what we’ve got here.  We’ve got a new tradition. 

She agrees to pass the gloves on to someone who needs them when her lymphedema resolves. 

We’ll all pay it forward together.

And imagine the stories those gloves will be collecting.

I am so happy. 

Advice from a survivor? Don’t spike your cider and then email your oncologist.

Nobody told me this.  It just makes sense that alcohol and liver mets don’t make a good mix.  So in general, I don’t drink at all any more.

But when I got the news I would be starting Afinitor, I decided to allow myself a bit of wine for one evening.   Afinitor handouts specifically say that alcohol can interfere with its effectiveness.  And, well, it also causes blisters on the inside of your mouth.  Also not a good combo with alcohol.  

So I allowed myself the wine and a self-indulgent maudlin blog post.  A final celebration.

When I got the news that my insurance had denied my oncologist’s request to start Afinitor, I decided to take it as an excuse to allow myself another drink-reward — a bit of carmel apple vodka in my apple-spice tea.

Spiked cider in hand, I settled down to my computer and CHOSE to check my hospital MyChart portal.    I saw a note from Dr. Wahl asking about the Afinitor status.  Cue in long maudlin self-indulgent note to HER, a bunch of “bring-on-the-chemo-I’m-ready-to-fight-harder-please-help-me-see-my-kids-grow-up” blather.

Variable emotional weather, alcohol and computers are a DANGEROUS MIX.

I’ve been thinking about the work these professionals do at the Swedish Cancer Institute.

We are a bunch of fucked up emotional nutjobs at times.  Understandably so. 

These people aren’t just healers.  They are harbors, shielding us from a few of the waves we create with our emotional winds. 

In response to my please-ignore-that-previous-note-I-see-my-therapist-tomorrow-note, Dr. Wahl wrote:
Hard to ignore that. It’s a roller coaster, no doubt. Pace yourself Suzy – this is a marathon not a sprint. I know that you can handle chemotherapy if you need it and I have no aversion to prescribing it if I think it’s the right thing. But I’m not there yet.
Hang in there.


What a PERFECT response.

On the emotional intelligence scale, this woman is a genius.

Let go.  Trust me.  Hang in there.  Walk the marathon.

And enjoy the scenery.