Sunday, November 2, 2014

Go Afinitor! Tumor markers DOWN by about 1/3! (Why am I grumpy?)



I found out on Tuesday that my tumor markers are down by 1/3.  That's really good news.  It means I get to stay on Afinitor, which has been a pretty easy treatment for me so far.   

I am only sharing this now, though, because I have been pretty dang grumpy and really didn't feel like celebrating with you all.

"It's good news, but I'm not happy and I don't know why and I don't feel like being around celebration so just leave me alone."  (My evening greeting to my PATIENT husband.)

On Tuesday, I was having issues with mouth sores (side effect of Afinitor) -- which pretty much cured my sugar addiction overnight.  Chocolate was the worst!  The melted chocolate stung and burn my mouth.  So maybe that was part of my grumpiness?

Dr. Wahl told me the steroid rinse she prescribed to help with my mouth issues would cause tooth decay. She told me I would need to be meticulous with my oral hygiene.  So I bought my first sonic toothbrush at Costco on the way home.

THAT THING IS AWESOME!  I have no idea why, but that thing works like a magic wand for my mouth pain.  Anytime I have a flare up, I just pop the toothbrush in and HEAVENLY RELIEF!  Not only that, my sores have HEALED.

Brushing my teeth has become this new addictive sensual pleasure!  And I can again eat ANYTHING.  Hawaiian Luau, here I come!

I haven't even picked up the steroid rinse from the pharmacy.

But I still didn't feel like celebrating the tumor markers.

So I thought about what I *do* like to celebrate.

I celebrate that at my June college reunion, I could not dance without some scary back pain.  But today I asked my best friends to go dancing with me because I can move like a TEENAGER!  (OK, a teenager with very poor dancing skills.)

I celebrate that today I hiked 8 miles with my husband, scampering up steep hills with a healthy pounding heart and inhaling the autumn air deeply and cleanly.  Just over a month ago, I pulled air through "smoky" lungs filled with cancer ditzels.

I celebrate that I can sleep in any position without absolutely no pain -- awkwardly cuddling my son after a nightmare, spooning my spouse, when for most of last year I have been sleeping on my back, without a pillow, so avoid positions that caused me pain.

I swim effortlessly for miles at a time, flip turning, diving, and then crawling over the side of the pool to get out.  In mid summer I was carefully and painfully moving through the pool, one lap at a time.  

I make love to my husband without pain -- something I thought that chemo induced menopause had made a permanent part of my life.

The treatments I have received at Swedish Cancer Institute have been restorative and healing.  I've been gifted with a healthy feeling body, a second youth.  

For all of this I celebrate.

But tumor markers just leave me feeling a bit pissed off.

Tumor markers measure the progression of my disease.   I expected my tumor markers to be down because I felt so good -- clear lungs, pain free.   And I expected to be HAPPY!  I thought the muddy fog that gathers before each oncology appointment would lift and I would return to brilliant blue skies.

But it didn't happen that way.  And that puzzled me for awhile.

Here's the thing.  When I swim, hike, dance, cuddle, and make love, I am ALIVE.  I am grateful for the pleasures of living.  And I can stay in this place of gratitude and ignore (deny) the cancer.  I CELEBRATE every day.

But tumor markers, even when they go down, are never about health.  They are simply about dying more slowly.   

I really enjoy knowing about my disease and my body.  I like the science.  I like visualizing my physiological self.  I like knowing as much as possible about what is going on.  It calms me.  It centers me.  

But it doesn't make me want to celebrate.

Tumor markers are about disease - an incurable, terminal disease.    

I used to picture fighting cancer a bit like solving a crime in one of those TV shows like CSI or Criminal Minds.  We'd have a team doctors who, much like the imaginary crime teams in these shows, would investigate this particular cancer, watch it, scope out it's behavior, monitor its strategy and then swoop in with their own clever strategy to arrest.

But despite all of the great advances and innovation, we can't really see cancer clearly enough yet to do that kind of behavior analysis.  Cancer gets smart and learns how to adapt to our strategies and treatments, but we all we can really do it throw another attack at it and hope the cancer doesn't already have a strategy to work around it right away.

There is no control over the war monitored by tumor markers.   A dip is just a lull - and we all know how the final battle ends.

I am grateful for these moments of peace, when cancer retreats or stalls.  

But I don't feel like celebrating right away.  


But I'm OK now.   Let's celebrate today.











Saturday, October 18, 2014

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

Monday, October 6, 2014

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.















Tuesday, September 30, 2014

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.

 


Thursday, September 25, 2014

My pain isn't a bad thing. Seriously!


I've have come to realize that my last posts have led many people to believe I am living day by day and moment by moment crippled with pain or the fear of pain.

More evidence that I am *not* writing well on this blog!  

I am almost 100% certain that I am in less pain than probably 99% of other 47-ish adults on this campus.    That is what is so COOL about my treatment team!

I've dipped into some pain, at very specific moments and in very worldview-shifting ways but for very limit time periods.  But now, because of effective treatments, I have a tiny burning skin sensation on my lower back (radiation) and a slightly heavy pressure in my pelvis that reminds me of being pregnant (a good memory for me).  I take no pain killers at all.

But I will TALK about pain here a LOT.  Because it's now such an important mechanism for knowing.

We of the older-than-45 set have learned that age and aches and pains are all just par for the course. It's been a few years since  I've been able to sleep in a tent on the ground without taking some ibuprofen beforehand.

But I am 47-years old and I have times (still now, with this nasty diagnosis) where I am completely pain free.  My body feels well-oiled, balanced, tuned and centered.

When I peek inside of this body with all of these scans, I see healthy bones and joints -- no deterioration and no arthritis.  Based on my scans, if I didn't have cancer, I would be able to run this beautiful  machine for decades without any need for major tune ups.

Most of us, in this certain age, cannot say that!

What this creates for me is a fascination with my pain.  I struggle not to feel happy or healthy or comfortable.   I feel healthy, happy and comfortable.   I struggle to understand -- and then, when things flare briefly, to navigate the rupture to my psyche and emotions.

So when you meet me on campus -- and I look, well, so healthy, happy and comfortable...  It's because I am!

Isn't that amazing?

I totally think it's amazing.

Tuesday, September 23, 2014

The Swedes would be PROUD



The "Swedish Cancer Institute" (aka SCI) has a warm, inviting waiting room for radiology.  We are a fucked up bunch back there.  One woman has cancer in her brain and tilts when she walks.  She struggles to finish her sentences.  Another woman has an autoimmune disease that has suddenly riddled her 30-something body with tumors, cut her sight and reduced her mobility (she is recovering now and much better).  One woman has ovarian mets wrapping around her bones like vines, squeezing her and causing excruciating pain.

You can find us by following the laughter.

Every single person -- the nurse, the radiology tech, the doctor -- treats each patient with such kindness and concern.  It's a warm blanket of care.  It's a centered, careful, loving attention.

It's so easy to document our complaints.  How do we document the successes?

I'm going to try.

In radiology, the nurse sat with me and, well, she held me.  It wasn't a physical hold.  She held me with her attention and with her focus.  With her stillness and her heart, she explained to me that she felt that any patient who felt he or she shouldn't call for help was *her* failure.  Her job, she explained, was to ensure that every patient knew they can and should call at any moment for any concern.

The radiology techs greeted me with care and consideration.  Each time there was a shift in who would be on duty, they were sure to overlap and introduce me to the next on-duty tech.  When *one time* there was a small glitch with the computer and I had to sit for a few minutes on the radiation bed and wait, the tech was clearly upset -- not because he feared what would happen to him, but because he did not want *me* to suffer any anxiety.  He was so present and careful and caring.

Errors happen.  But what these radiology professionals illustrated was that it's all about caring how the *patient* feels.  It's not about the mistake or computer glitch or whatever.

The Issaquah Swedish Cancer Institute ROCKS.  I am so grateful I did not go anywhere else.

Imaging was good.  But "SCI" is AWESOME.

The patients I connected with in that radiology waiting space were so grateful for the warm space created for them.  Five of them, independently, and unsolicited, talked to me about how they dreaded treatment at first, but that after starting, starting looking forward to it each day.

I don't want the burns and scars that come with prolonged treatment.  But I have to admit that I will miss this women and the community they build back there.

We of the radiology waiting room are survivors.

Thank you, Issaquah Swedish cancer professionals, for supporting us.

Bravo.

In gratitude,
Suzy


Sex



I decided on Friday to just go home and have sex with my husband.   It was great.   It was intimate and loving and sensual and fulfilling.

And on Saturday, 24 hours later, I couldn't walk.

You should all ask yourselves...If tomorrow I were to die, what would I do?  And on Friday, for me, the answer was to make love to my husband.

And then for a week I struggled with radiation and walking and pain...

I am so glad for my choice. 

Then...OK... This might be TMI!! 

Then...my radiologist asked if I have pain in my pubic bone.

I couldn't think of a pain episode.

But then, later, I realized that I feel HOT.    And that same feeling of "hot" caused me to research last summer whether I might have ovarian cancer or not.  I had pain during sex, bloating, and a "hot" feeling in my pelvis...with, what felt like, the pain of ovuluation. 

So now I know.  It's cancer in my hip bones.

But if it makes me feel hot?  Whatever.

That same feeling of "hot"...makes me feel...well, HOT!

Take what you can get, right?

Radiologists are COOL!



So Dr. Mitchell is apparently the father of Ian Mitchell who has been a classmate of my daughter's since Kindergarten!  GETOUTTAHERE!

Dr. Mitchell was the oncologist on call who met with me to talk about radiation.  We spent a lot of time talking about kids, teenagers, high schools, peer pressures.

He was so careful to be PRESENT with me and so intentional about connecting with me.

Radiologists deal with pain.  We went through my PET scan and he would touch the parts of my body with tumors and ask me if the pain was here or below or above.

It was such a CLEAR feeling.  And then we decided to work on just one of the tumors.

And in one week...

I can sleep in ANY position!  (I have been sleeping on my back in yoga shavasana position for a year.)

I can walk up steps!

I can pick things up off the ground!

I can sit...without nerve pain going down my leg!

I can wake up and get into a sitting position without gathering the courage to beforehand...

It's so wonderful to UNDERSTAND my pain ...and to see an approach to combatting pain work.

Thank you Dr. Wahl and Dr. Mitchell

Death



This afternoon I am sad.

I am thinking about the fact that I have a cancer that does not seem to be responsive.  It's too smart.

And I'm thinking about having to leave my daughter, and my son, and my husband.  Within a year?  Two years?  Five, I hope?

And all of you.

I know you will all be fine.  And that is such a consolation for me.

But today, I am angry and sad that I do not get to participate in the futures possible.  I am most angry and sad about not being able to participate in my children's futures.

And I sit in the sadness and I cry and...well, I drink a bit of red wine...  Because the next hormone treatment doesn't not react well with alcohol and chemo makes alcohol taste vile.

So I'm a bit maudlin.

But I'm not afraid of death.  I don't feel a need to control it.

That's not the same as giving up.  I am going to do everything I can to survive.   But I am surviving in order to be with the people I love...and to support them.  I am not surviving in order to avoid death.

But now, twice this week, some people are coming forward with some organization or some recipe or some diet that has AMAZING results with cancer victims.

I want you to know this...I think I can smell the fear of death.  And if you come to me with this fear of death and you tell me your answers, I will not listen to you.  I will be polite and I will respond well, but I can smell you.

I've been to where the fear of death can take you...and that is in itself, death.

If you come to me without a fear of death, with a love for life but an acceptance and openess to death, I will feel that, too.

We are where we are.  I do not judge anyone for where they are.

But I would ask you to ask yourselves...  Are you suggesting a "way out" to me because you have knowledge of a solid, reliable approach and want to share it?  Or are you sharing because you are even a little bit desperate to ward off.... DEATH?

I'm am not afraid of dying.  I love sleep.  I love my family and the idea of being with family or watching family in an afterlife.   And I have dreamt a connection with a being that exudes all flavors of love.     None of these options seem bad, to me.

My loss, is nothing, compared to the loss my children and my spouse and my friends will endure.

I mourn for you all and for myself tonight.




From WHEELCHAIR to Tri-athlete in a WEEK!



On Saturday,  September 20th, I suddenly could no longer walk.  I could stand.  I could shuffle forward in one direction.  But when I wanted to change direction, I had to stand there, gathering my courage, before moving my leg to the side to make the turn.

It hurt that bad.

The idea of going down the stairs in front of our house was so painful that I thought that if I *did* call my doctors' office and they did recommend an xray, I would need to call 911 to get help getting out of the house.

And I also knew this kind of disability, with such a sudden onset (vacuuming!) would trigger a major response from the medical community.

And I didn't need more stress.

So I decided to wait and see.  I felt fine sitting on our MARVELOUS new couch.    I just couldn't move.  If I was not improved in the morning, I would call.

And the next morning, when I could shuffle walk and even change direction with only moderate pain, I decided to ...

GO SWIMMING!

I was still convinced I would need a wheelchair to do the work I'd signed up to do this week, but I thought that maybe a hospital would be able to rent me a wheelchair?  So maybe there would be a positive outcome...

I shuffle walked into Samena.  And GOD, getting my swim suit on was a BITCH.  But I got into the pool and I very gently swam...lap by lap...stroke by stroke...with care and compassion for my body...one mile.

And when I left I could walk.  Slowly.  Carefully.  A bit painfully.  But I could walk.

The SAMENA CURE!

Then I emailed my oncologist and asked whether my reaction was appropriate or not.

Apparently not.  LOL.

I knew this.

She wanted xrays and radiation and all that stuff I knew they'd ask for on Saturday (with the STAIRS in my way).

And I couldn't figure out how to SCHEDULE all of that stuff into this particular week!  I'm BUSY!  Too BUSY for cancer!

But..then I realized that this could provide a BREAK.  I am overwhelmed.  I can barely walk.  I am tired.

I can spend a few hours getting to radiation and back and take it as a BREAK.

So I did.

And now, only five sessions later... I can walk miles, I can swim, I can sleep in ANY position I want (I have been sleeping on my back at LEAST one year to avoid pain!) and I am so grateful.

My oncologist is sad.  I can see that.  She wants my cancer to be the responsive kind.  And I so adore her for her sadness.  What a genuine, present soul.  

But I am so grateful for her.

My request?  Send all of your waves of warm light and prayer and support to Dr. Tanya Wahl.    She reminds me of my social justice activist colleagues...  She works and works and works for a goal that is not clearly achievable in the near future...but she enriches all of our lives while she does so.

I am SO GRATEFUL.

Lovingly,

Suzy

Friday, September 19, 2014

Paul and Sleep and Delphine and Butterflies



It started, probably, about the time we got the news that the cancer was acting like a cancer that had seen years and years of hormone treatment.  It was too intelligent.  Paul wanted me to cuddle with him every night while he fell asleep.

Now, while this feels a bit weird (He IS, after all, 5 foot 3 inches tall, I think!) I loved it.  He is my baby and I do not have much time to cuddle him.  He gets every cuddle he asks for.

But it gets tiring.

Now, Paul is sleeping downstairs on a hide-a-bed, next to our bed.

Francois thinks this is fine.  I also welcome our Petit Paul...But I wonder if this is covering something deeper that might need addressing.

And when he sleeps in our room -- It causes him to go to sleep later -- to get up earlier -- to lose some of the physical balance he will need to deal with this.

We have stuff to share with the therapist.

But Delphine!  She is flowering!  She seems to be coming out.  She wears shorts and t-shirts at times -- even on cooler days.  She is signing up for clubs.  She is asking for appointments with experts who can help her with her goals.  She is doing wonderfully.

Thank you NEWPORT HIGH SCHOOL!  Turns out, the cheerleaders are not the top of the pecking order here.

So I feel so conflicted -- dragging her to therapy.  "I'm FINE!" she says.  And she worries how she'll get her homework done, attend play practice, go to therapy and then make the evening robotics club session.

I think I will make a deal with her.  She gets to skip this-- if she sees the therapist on her own another time.  That might work.

We are all going to need all the support we can get.  I am most aware of this.  I understand what my oncologist is saying to me.  Francois is somewhat aware of this.   Delphine is suppressing everything.  Paul is having nightmares (but doesn't know why).    So they all don't know what is coming.  I know, but I don't *realize* what is coming.

It's time to dig in and slow down a bit.


Wednesday, September 10, 2014

August for a stage IV survivor

 
 
 
I want to apologize for the hiatus.  It's been almost a month since I posted.  Well, this stage IV survivor has been busy doing....
 
 
 
















I have been feeling healthy, fit, engaged, connected and happy.  But while I was living well and my liver function, bone pain and lung function was improving, my tumor markers were doing this (normal = green and Suzy = purple):

 
 
 
So my oncologist ordered a PET scan.  And the PET scan, of course, was going to prove that the tumor markers were just a "FLARE"!  Right?
 
But that didn't work out.  Parts of my body have responded well to treatment.  Other parts, medium.  And a few tumors are growing.  More importantly, there are new tumors growing in my liver.
 
So that easy two shots in the butt scenario for years is not really going to work.  We are going to try a month of another hormone treatment.  But my cancer's reaction really concerns my oncologist, so we are going to only do this a month, and if there is no improvement, it's chemo at Halloween. 
 
BOO!
 
That's not so bad.  I've done chemo.  And this time there are so many effective options that I get to choose my preferred side effects.  I think I look damn fine without hair, so I'm going for the no nausea option. 
 
Maybe the hormonal treatment will work.  But my cancer seems, well, too damn INTELLIGENT.
 
 
How's that for Halloween scary?
 
 
But you know what?  The scary part is definitely there.  But the emotion that overwhelms me today is gratitude for  the genuine sadness and concern in the face of my oncologist.  How can any professional survive and care that much about each patient?  Dr. Tanya Wahl rocks.  And wow.  I worry about her.  As I worry about my colleagues who care that much about each of their students. 
 
Healing is important. 
 
You keep on healing people, Sayumi Irey.
 
Love to you all,
Suzy

Tuesday, August 26, 2014

Family Therapist



When it came time to go see the family therapist I selected, I expected resistance.  For me, a sign of how serious my kids take this, was their docile compliance.  I've been analyzing my own ego for almost my entire life -- and I've been working with a great therapist for over a year.  So the session we had with the therapist seemed slow and shallow to me.

I was certain that when we left the session they family would complain.

They LOVED her!  They loved hearing everyones' answers.  They felt heard.

It made me realize that even though I think I have a special talent for connecting with some core emotions people are exuding -- I don't know how they are thinking about what they are feeling.  And, really, I don't know what they are feeling, then.

I need to ask more questions and listen more carefully.

But today, I am grateful for a good therapist and a willing family.

XOXO
Suzy

Saturday, August 16, 2014

Old News - New Post


There's a gap in my story -- it starts right after the shock and anger of  The Swedes Would Be Ashamed Post.    I've never really explained to you all how I moved forward emotionally from there.

Friends are SO IMPORTANT.  In my friends' responses to my Facebook posts and in the cards of support that came to my house, I could see a reflection of the intensity of my emotion.  I could see the anger.

Andrea Ball sent this wonderful card from Tinker Bell, along with a bobble head Tinker Bell, stating she'd poke people in the eye if they made me angry.    Ramona Brandes sent numerous gift cards to my favorite resteraunt for the days that felt overwhelming.  People shared their painful healthcare stories.  They ranted with me about the need for this and that and that and this in our healthcare system.

The anger reflected back at me stopped me cold.

There was an older woman, a colon cancer survivor, who, in response to my own rant,  went on and on and on and on about how horrible her doctor was once because of this and that and that and this.

Her daughter-in-law, a breast cancer survivor just coming out of treatment, apologized to me for her mother-in-law's behavior.  

I was annoyed by that older woman.   I was annoyed at myself.

And there were Paula Sebastian's Facebook posts -- about the two inner wolves and the choices we have about who we want to be.  She's walking this walk and could offer the advice I needed.

Anger is useful.   But what triggers anger is always more complex that what we first acknowledge.    I needed some distance in order to really dive into what was behind this anger.   Which parts are mine to own as a survivor?  As a human?   Fear, vulnerability, powerlessness...  Only by understanding those things I bring will I be able to really explain to anyone how systems could change to better support me and others who walk similar paths.

And in this exploration, I need to acknowledge the role I play in creating very similar systems that work in very similar ways against our most vulnerable students at the college.

And that takes some courage and some time and some reflection.  And some friends to push you back onto the right path.    I'll post the insights I've come to later, another day.

Today I just say thank you to my friends.

Thank you!

Suzy







New to my blog? Start here.


I have been diagnosed with Stage IV breast cancer.  It's everywhere.  in my lungs, bones,  and liver.    So I pretty much know how my life ends.  But I have always been one of those readers who can't resist reading the ending of a good book.    I've never found that to lessen the enjoyment of the story.  

The good news is that like all of you, I have no idea what happens in my plot line between now and that end.  And this chapter is really really good.   I look great.  I feel great.  I would even say better than ever, in many ways.  (To be honest, though, I can't remember what 20 looked or felt like.  LOL.)   If treatment options work well, I could live very well for years.  And my cancer is well researched -- there could be some really good plot twists in my future.  

A good story is all about the characters.  Rich, complex, multidimensional, dynamic characters create compelling stories.    You create my hero's journey.  You engage, confront, teach, reflect, share, learn, process, and transform.   My life is the best book I've ever read -- and I thank you all for that.

There are all kinds of very important rules at work about who can ask what about whose health.  So I am hereby giving everyone permission to ask me anything he or she wishes!   I think I'm probably pretty far ahead of you on this particular sad road.   And those of you who have been on this road yourself before already know the road is what it is.     I've explored a lot of emotional landscape -- so your feelings and emotions will most likely not trigger something new in me.   They will only honor me.    

This blog is a place where I reflect.  It's a place of introspection -- and sometimes catharsis.  It feels somber and slow,  heavy, when I compare it to my life as I live it.   So you may also want to track me on Facebook.  But the interesting thing is that I'm not posting to Facebook as often recently.  Facebook feels too light.  There is a heaviness to my happiness now that I find centering and fulfilling.  It settles me, contents me, in real life.

Saturday, August 9, 2014

FLIP TURNS for the entire mile of front crawl! STRONGER THAN EVER!


My weight is back to within the normal BMI range.  I look and feel great.  Strong.  My energy is higher than it has been in months, at least.  Maybe years?

Light.

Light as hope.

Light as health.

Light as love.

And with this healthy physical strength, comes another surprise strength of Stage IV.  The lightness of freedom.

I am free from feeling I alone need to solve the problems I see.  I am free of the guilt when I can't.  I am free of the desire to overfunction for approval.   And this gives me a new freedom, a new space, for action.

The lightness of this freedom allows me to move mountains.  Or at least help trigger the team who can do so, together.

I can't imagine being my sister.  It used to weigh me down to try.  She's a single mom with her own mobility and pain limitations.  She is nursing her best friend and caretaker (mom) while mothering two challenging (but adorable) boys.  And now it looks like she may be the last one standing.  There will be nobody left to take care of her.   She has been elected the new matriarch.

She's cornered herself financially in Mom's house.   Escaping from the full-time care mom is starting to need seems to keep adding up to homelessness for my sister and her family.  Finding a job and a place to live without mom feels impossible while mom needs so much care.    In the meantime, the lines between adequate support, encouragement for independence and gradually growing neglect blur for both of us.  They blur for all of us.

I think, for me, part of that blurring was caused by how overwhelming the situation has felt and how powerless I have felt and yet how responsible.  It has blurred for mom because of her desire to support her daughter and be strong and leave us with a good memory of her and her death.  It has blurred for Kaylea because she is under the overwhelming weight of it all, escaping here and there with marvelous family outings with her boys and gramma -- the coast, Wildlife safari, festivals, parks...  She is creating memories.  But the house and gramma's needs weigh heavier and heavier.

Until it's just all too heavy.  And it's no longer OK.  And we are not alright.  None of us are.

And my Stage IV freedom lets me declare that without shame, or fear, or a misplaced sense of responsibility.

When the hospital suggests a residential rehabilitation program for mom, I jump at it.  When they state the team working with mom will call a family meeting, I'm elated.  There might be home visits?  YES!  We need these lines drawn for us.  We all need the clarity.

More than a guide.  This team will teach us, but also set the boundaries for us -- expectations of what the house needs, what mom needs, what Kaylea needs.

It all really feels like what I need.

Peace/Light

Here is what a team feels like.  The doctor remember my mother and my sister from the last visit to the ER.  He even knows I'm the sister from Seattle, even though he's never met me before.   Dr. Kahn is Mom's doctor on the oncology/palliative care floor, where she gets kindness and freedom.  He starts by lightening the treatments rather than working to *do* something to fix something.  There's a physical therapist, an occupational therapist.  The Dr. is the first to diagnose it, but he asks me a question that allows me to state it rather than throwing is at me --  We are here because we are overwhelmed at home.  The physical therapist is the one who finds the solution -- rehabilitation, training for mom to get her walking, dressing herself, bathing -- And time for Kaylea to figure out her next steps.   The occupational therapist shows us how simply we can start supporting mom's independence -- but how time consuming it will be.

Clearly everyone is on the same page here -- and they are all working towards the goal moving mom to a place where she can actually get better for awhile.   And with this team, whole family approach, I am hopeful that we will all be moving to a place where we can get better for awhile.






Saturday, August 2, 2014

Papa? He asks through tears. If we all have to die, why do we even live? What's the point? Why don't we just all die now?



This is a story that makes me happy and will make you cry.  Many of you, at least.

This week I have been down in Eugene, spending time with my mom, giving my sister and her boys a well-earned break.  It's provided the first space where Francois, Delphine and Paul are together without me.

Paul hasn't been sleeping well lately.  He claims all sorts of different ailments -- too hot, bad dreams, headache.  

But the first night I was away, he came down to Papa's room in tears and said he was afraid "Maman is going to die" and afraid that he would grow up and get cancer.

Francois was so sweet and good with him.  Honest, but hopeful.   There are some great medicines now for cancer and we are very hopeful these will work with Maman's cancer.  And when you grow up, there will be even better drugs.  Hugs.  Stories.

The next night, Paul came down in tears again.  This time with a profound question.  Why do we have to die?  Why do we live?  If we all have to die, why don't we just all die right now?  What's the point?

And Francois is such a good parent.    He is awed by the question.  He shares his wonder at the question with Paul.  They talk about the many different people who have struggled to answer that question.  And they sleep cradled with love and home.

I am so happy Paul is sharing with his Papa.  And I am so happy he has this Papa.  And when I hear these stories, I am content.  I am satisfied and supported.

These are stories of what endures.  



Thursday, July 31, 2014

STRENGTH!



I am having a hard time even remembering what it was like to be in that pain of a few weeks ago -- when I would use the power doors of the side doors on the minivan and load groceries in the chairs rather than open the back hatch and be forced to pull that dang door back down to close it again.

When I would ask the kids to pick up something I dropped on the floor.  When I was breathless with gratitude that Francois was arranging the sheets on my side of the bed each night.

When I would finally push through and haul my butt into the driver's seat of the car, but then drive with my body all crooked because it hurt too much to straighten it out.

I am pain free!   Swimming a 1 and 1/2 miles feels too easy.  I *want* to jump and run (but I don't -- I'll wait for the scans and the clear-to-go from my doctor).   I can cough without dread and sneezing -- well sneezing will still cause me to stand still and utter a OOOooh LA afterwards.

There a places in my body now that are stronger, and less painful than before treatment started.  This definitely feels like healing.

And I saw my oncologist.    She's amazing.  And now I've done the research and followed the doubts and know that my deeply reflective, researched answer is that I want to be with this Dr. through this journey.  That feels strong and right.  (Still am not running back to surgery outpatient in Issaquah, though...  Not yet.)

It's been a few weeks of marvelous insights and revelations.  I feel huge growth spurts growing out of this.  So much to process -- and too many happy experiences taking up my time to sit and write about it all.

Much love,

Suzy


Friday, July 25, 2014

My oncologist Facebooks with me.

She posted a comment when I posted about sciatic nerve pain.

She follows me.

You don't leave a medical provider like that.

So I was relieved, after shedding a few tears, really, when the intake specialist at Seattle Cancer Care Alliance tells me "There's no team here, either."   I had been telling her I am perfectly happy with my oncologist and I trust the treatment she's prescribed.  I just don't trust the Issaquah team.

"There's no team here.  You will see a medical oncologist who will review your scan data and you'll be sent to the UW hospital for things like liver biopsies.  You can just as easily have the same experience here as you did at Issaquah."

Oh.

But...but...but...   Your website is all about collaborations.  There's a breast cancer team that meets weekly to discuss patients.   There are links to Seattle Children's and the UW and the Hutch.  Programs to support families -- kids of parents with cancer.

No.  You see a medical oncologist, not a team.  And the oncologist will review the same data your oncologist has reviewed and let you know if he or she agrees with the treatment plan prescribed.  If there is agreement, you stay with your oncologist.  If there is not agreement, you decide which plan you like better and go with that oncologist.  It's just a medical second opinion.

Tears well.  No team?  How about a guide?   Maybe I don't understand the roles and responsibilities.  Is the social worker the guide?  Is that the person who helps you navigate this?  Maybe I've just been entering this all from the back door.

The intake specialist sounds genuinely sad and at a loss.  She doesn't know.  Maybe?  She says she's sorry that the website is misleading.

And while I am relieved in a significant way (I really don't want to leave Dr. Wahl), I am also feeling abandoned, disillusioned.  That makes me sad.

I had already been thinking a lot about what it must be like to be each of the medical providers I've encountered.    And I've been comparing the hospital institution to my college, Bellevue College.  I'm in the position of a first generation college student who did well in high school.  I feel like I'm good at school.  I feel like I know how the classroom academic game works.  And when I get to college, that cultural knowledge and academic preparation propels me well towards success....until it doesn't.   If you don't have an insider perspective of higher ed culture, there is a place where your assumptions of how academia works break down -- and typically, you fail.

So I came into this second round of cancer culture with that history of being a successful patient.  I felt literate.  But I wasn't.

I have a lot to say about this.  But I have to get ready for work.  More soon.  :-)


Wednesday, July 16, 2014

Cough-snapped that rib back into place!



Or, it could be my "flares" are just calming down.

But today is practically pain free!!

It's amazing how much easier it is to get work done. :-)

Monday, July 14, 2014

Beginnings



Swam one mile in one hour!  Three weeks ago, I was whipping out 1.5 miles in 45 minutes.  Still, I'm happy to finally be able to push through the rib and back pain one lap at a time.  (Absolutely cannot flip turn!) I felt gradually better as I clicked the laps off ever so slowly -- until, at the very end, ready to get out, a drop of moisture caught in my throat.  One small delicate cough practically brought up a goddam rib.

Feeling proud.  Who knows?  Maybe, one lap at a time, I will get back to the 2-mile Swim Across America open swim this year.  Or next.  You don't need to flip turn in open water.

Tried out that cello!  Played for 14 years and then didn't play for 20 years so Suzuki Book 1 seems appropriate.  Fingers ache.  Chest twinges.  Bow thumb has developed a painful hang nail.  But it feels good.  Who knows?  Maybe, 1/2 hour after 1/2 hour and day after day, I might work my way back up to playing in the community orchestra!?

Talked to Seattle Cancer Care Alliance.  They asked me if I had had any reaction to the treatment.  Feels so nice to be asked!  We are working out a transition plan so I can move from Issaquah over to their group without interrupting my treatment plan.   Seems like the right next steps.   Cancer is the same old cancer, which is good.

Treatment for stage IV is about walking the path.  There are no big goals.  There are no clear maps of the distant geography.   Or, rather, if there are, it's not good news.  Not knowing means options are open.  But it's definitely a path I will be happy to walk surrounded by really good programs, professionals and caretakers. I hope we can hope we can walk the simple path of hormones for a long time.

All of my identities are rebeginning.  mother, daughter, sister, friend, spouse, colleague, chair, teacher.

Paul wants cuddles again.
I managed to not nag Delphine so much when the heat and my back pain annoyed me.
I made plans to play music with my sister via Facetime.

Now I need to renew my commitment to my very best friends and my spouse - renew my gratitude and devotion to my cousin.  We are all hurting, learning and growing in different ways.  I need you to need me to be there for you as much as you need me to need you to be there.

I will begin practicing listening and hearing.

Love you all.  Loved the bike ride to the Redhook Brewery.  Loved the World Cup party at our house.  Loved the family outing to swim at Samena.  Love the plan to see old friends from high school tomorrow.  Love the plan to hang at Green Lake with family on Wednesday.

Love the passion and effectiveness of the Faculty Commons staff.  Love the patience and loving support from A&H.

Love new beginnings.  I always have.




Friday, July 11, 2014

Results

My family, my friend, my advisor and advocate, Janis, accompanied me to my appointment with the on-call oncologist.  It was her first time being a patient advocate and my first time bringing one!  We were a bit clumsy. 

"That went well!  That was good news!" she exclaims in happiness as we approach the elevator on our way out.

"It WASN'T GOOD,"  I snap.

The MRI report states my back, hips, lymphatic system and ribs are riddled with cancer AND there is very little evidence of structural damage.

My lungs have innumerable small tumors AND my lung function is 100%.

The neoplasm in my liver is 12 cm AND showing the exact characteristics of the original 2008 cancer, so it should be responsive to hormone treatments.

There's no evidence of tumors in the brain BUT we should get a contrast MRI to find microscopic pathology -- tumors could grow in the brain while they respond well to treatment elsewhere in the body.

"It's not GOOD," I snap, "It's just not WORSE."  (yet, I think)

I am still the same me and I enjoy the same things and love the same people.  But every once in a while, something happens to remind me how fucking serious this is. 

Francois asks me if maybe we should just do carpet now throughout the entire house and leave the hardwoods/laminate for later.

It's a knife through my heart when I reply, "Then *I* won't get to have hardwoods!"

The doctor, because I ask him to, pulls me through the PET images of my body -- tumor after tumor after tumor after tumor after tumor.

There are moments when this smashes into my reality and crushes my illusion of normal.  And right now that makes me so angry.

So I throw my anger at Janis in the car as she drives me home.

And then it rolls away.

And while I don't feel light and optimistic, I feel centered and able to acknowledge she is right.

It was good news today.

Considering.

And I have some pretty fucking great friends.

Thursday, July 10, 2014

Moving On!



Dr. Dong's nurse urged me to use the hospital evaluation form (which has not arrived yet, by the way) and document my experiences.  She said that too often people don't think it will make a difference so they don't take the time to fill out the form.  She wanted me to know that the hospital takes feedback very seriously and there are daily meetings to address issues.

I believe her.  I trust what she says is true.

But beyond that one nurse's approach to supporting my recovery on that one afternoon, I don't have anything specific to report.

People seem genuinely happy to work here.  They enjoy each other's company.   That's apparent walking down the halls.

People care.  They want to do a good job.  And I think people have done a good job.

It's this very subtle pattern of communication gaps -- assumptions about who patients are, what they are feeling, what they know...   That's something a daily meeting isn't going to change.  You need some major consulting and top down cultural reform.  It's structural.

But this experience is going to keep emotionally compromising me -- in new and strange ways.  I don't know when I will be able to trust myself and when I won't.

Communication gaps can't be a regular part of the equation.

Seattle Cancer Care Alliance

I called a single toll-free number from a website and got a live person within three rings.   This person answered the phone "Seattle Cancer Care Alliance."   This person asked me my diagnosis and within seconds, had me speaking to a person who specialized in that diagnosis.

The specialist told me her name is Krista.  She told me what her job was and what she would be doing for me. She gave me a direct number with which to reach her.   She told me how many people (three) she worked with and explained that any of them might answer the phone, but I could always ask for her.

She took down information about all of the clinics and hospitals I have been to and said she would immediately begin collecting the records from each of these places.  She gave me a timeline of the process.  She would collect the data.  A team would review the data and treatment plan and then decide exactly how the transfer from Swedish Issaquah to SCCA should happen.  She said this could take a while.

It might be a couple of days before she got back to me.  (HEART HEART HEART!!)

Overlake did a good job as well.  The Breast Center, at the time, was opaque and overwhelming.  I never knew who was what (doctor?  tech?  warm towel lady?) or what the process was and the reasoning behind it.  But Overlake Oncology was great.

A team of doctors met every week to discuss my case (SCCA does this as well).  The staff at the front desk knew who I was immediately, the first day.  They talked to me and interacted with me in a manner that indicated they saw me, Suzy.   They knew everyone in that waiting room by name.  They knew who they expected to see each day.  They called and arranged for procedures requested and provided me with all kinds of context about where to go, who to see, where to park.

The nurses knew us all, too.  Even the first day.

At Issaquah, in the Oncology waiting room, Francois and I watched one cancer patient after another, regulars, you could tell, try and start up a conversation with the staff at the front desk.  The staff weren't rude.  But there was no delight or pleasure evident.   Each patient was animated, outgoing, looking for connection, letting the brightness of their heart and soul shine through.  The responses from staff were reserved, clinical, factual.

The only positive thing about that waiting room, said Francois, was the therapy dog that walked through.

So there really isn't anything wrong to report.

It's just not right.




Wednesday, July 9, 2014

Magnetism


Pain pulls in emotion.

The crushing across my ribs snaps me to a breathless moment treading the Swim Across America 2-mile in cold Lake Washington, certain I would never breath again.

It propels me into the tight angry flesh clogged with lymphatic fluid, solid, hard, unmoving, reeling from chemo and a double-masectomy,

It smashes me into suffocating pain and pressure, a heart attack panic rising from severe constipation and heartburn.

It pounds in my chest, paralyzing me on the high ropes course.

It jeers in my ear, threatening loss, vulnerability, irrecoverable falls.

Without ever having any representative from your office speak to me, without ever speaking to me,  you tell your nurse to tell me there's no reason to see you.  I could wait for Dr. Wahl's return.

But you will see me.

How generous.

I've done a lot of the work myself - I meditate down the panic, Smooth Move the heartburn away, exercise gentleness into the angry flesh.

I use logic to calm my fear --  despite the pain and tenderness, I must know the ultrasound would have shown no bleeding, or they would have never let me leave.

I'm OK.  I say to myself.

But  I shouldn't have to justify why I need you to help me understand my pain.

The anger from the July 4th post grows out of shock.  I wasn't ready to feel this fragile, this vulnerable, this quickly.   I am screaming someplace deep inside.  That's nobody's fault.  It just is. Unavoidable.

But there is also betrayal.  A breach of trust brought on by one single major mistake (the FALL) and a dozen micro-insults, a small lie of omission about med students,  an unsupervised teenage observer chatting me up about my cancer, a non-response to a call for information from outpatient surgery,  an eager-to-get-Suzy-out-of-here nurse, the party atmosphere in the CT room.

The staff referring to the doctor as scurrying and hiding.

The nurse lying about checking me before having me try to get dressed.

The nurse explaining to me how her supervisor saw her point, that my fainting was unavoidable.

 I move backwards to insults past.

The Oncology receptionist snorting with impatience when I can't tell if Dr. Wahl works at "SCI"

(Sounds like a goddam TV crime show to me.  Is Swedish Cancer Institute really that hard to say?)

The lack of any printed instruction at all after the MRI.

It's all air.  Smoke and mirrors.

There is nothing real.

But emotion.

Ribs out of place?  Bones damaged?

Maybe.

Probably not.

But that's just it, right?   How can I stay with a team who doesn't understand?

Emotion is physical.












Friday, July 4, 2014

The Swedes would be ashamed.



Epilogue

After the boat babes in the surgery room,  the well-intentioned but racist, demeaning giggling kidding behind my doctor's back by the nursing staff,  the cheerful chickadee nurses who never asked how I felt, and the nurse who asked me to get get up an get dressed at EXACTLY the minute the minimum wait period had passed, I did not need to fall flat on my face in a dead faint to feel unsafe at Swedish Hospital in Issaquah.

The experience was so overwhelmingly bad that I am questioning whether I can feel safe in Issaquah Swedish at all.


Prologue 

Thursday, June 26

Imaging at Swedish scheduled all of my appointments for the week.  I got a handout for the PET scan and a little appointment reminder telling me when to arrive for the MRIs.    The liver biopsy would be on Thursday - but they would need to confirm.  It all depends on the doctor's schedule.

"Can I drive myself to the liver biopsy?"

She looks into her computer.  "It looks like you can drive.  You have a recovery of 2-4 hours afterwards.  But they should follow up with you."

Tuesday, July 1st

At Imaging again for another procedure, I am able to confirm my liver biopsy.   Check in 10am.  Surgery at 11am.  Recovery 2-4 hours.

Wednesday, July 2nd 

The morning of July 2nd is the first time I get a call at home from Outpatient Surgery at Swedish.  It's a message from "Sharon" to "call her" to talk about check-in for the biopsy.  She leaves a number.  I'm running out the door for my appointments at Swedish.  I figure I will just ask while I'm there.

At Imaging, I ask at the desk about the call from "Sharon" and if I can just talk to someone here.  They tell me I should go down to Outpatient Surgery, across from Oncology, and talk to them.  They give me very precise instructions.  

Everything is great.  I do my PET scan, do my shots and infusion, and then, at around 2:30-3ish, head over to Outpatient Surgery.

When I ask the woman at the front desk about the call I received and whether I could talk to someone, she tells me I "need to call my doctor." 

Like, uh?  Which one?  The person I have yet to meet who will be doing my liver biopsy?  My oncologist?  My primary care practitioner?  And why would my oncologist or my PCP have information about how I should check in for surgery?

I tell the woman that I'm pretty sure this office called and left me a message to call them.

She hands me a card with a generic "scheduling" number on it and tells me to call that number.

So I leave and I call.  And after tripping through multiple phone directories, I end up being scolded by someone over at Swedish on First Hill for being at the wrong campus.  "This isn't Issaquah!  This is First Hill!   (??!!)

I find a voicemail on my cell.  I call that number back and it dials into nowhere.  

When I get home, I carefully pull the phone numbers off the voicemail messages and I try calling those back.  

It's 4pm.  So the receptionist scolds me, tells me at this time in the day she doesn't think there will be anyone around to help me.

So what the HELL?     I tell her I have been at Swedish all day.  I have sought to talk to someone in person to no avail.  I have tried multiple phone numbers and I do not know what I am supposed to do for tomorrow.

So now, suddenly, it seems she perceives me as worthy-of-some-extra-effort.   Now, suddenly, she was willing to go look and see if someone was available to take my call.

When I finally get someone on the phone, he asks "So, what do you want to know?"

"Uh, I don't know.  I'm returning a call.  I *assume* this call is to let me know how to prepare for my procedure tomorrow?  I'm assuming I'm not supposed to eat or drink and that I can just check in at my 10 am time."

"Yup.  That sounds about right."

OK, then.

Chapter 1 - The Cheerful Chickadee Nurses

Francois and I still feel it's a bit strange that I am allowed to drive myself afterwards, so we make a back up plan.  Francois will come and drive both cars home if it turns out I need a ride.    (He pantomines how he would do it and it sends me into hysterics.)

"Who will be waiting here for you?" asks the receptionist.

I brought myself, I tell her.  She's not sure how that will work.    She tries calling back to a nurse, but doesn't find anyone.  So she tells me I can just talk it over with the nurse when I go in.  I figure I have plenty of time to call Francois.

I am in pain and I am feeling queasy.  I've read about something called a 'FLARE' with my treatment.  And believe me, I feel a  war going on in this body.  I have aches and pains and entire regions seizing up on me.  It feels bonefully painful across my chest to draw a deep breath.  I cannot lift myself from a lying position without rolling over through grunts and sighs, sliding down onto my knees, and then creakily standing up.

Despite having loaded up on carbs and water the day before, I feel depleted, worn out, even a bit queasy-sweaty.

When the nurse takes me back to my room, I am affronted with cheerfulness.  "What's the weather like!?  What are you planning today!"   

They are buzzing around cheerfully getting things set up and I realize I need to break in and let them know how I'm feeling.  I'm annoyed at having to break into their cheerfulness to get them to pay attention to how I'm feeling.  

"I need to let you know that I'm not feeling well this morning.  I feel queasy and weak, shaky.  I don't feel myself."

They thank me for letting them know.  

Are you in pain?  I am learning to ask people to be more specific with that questions.  I have pain in my back, across my chest, down my legs, in my butt, in the center of my shoulders....

So now they think I'm a pain dweeb -- and I keep trying to tell them I'm not.    Everyone pays very special care and attention to my comfort. My experience of the IV lines and the sedation was quite pleasant and comfortable.

But I don't think anyone passed on the "I'm-not-feeling-myself-I-feel-queasy" part to the next nurse.  

Chapter 2 - The Boat Babes 

My doctor comes to visit me and tell me about the procedure.  He asks if I would be willing to allow some medical students to observe the procedure.  I love the idea.   Who's not for supporting medical students!?

I'm a bit taken aback, though, once I reach the room where the procedure will take place.  The "med students" are a couple of over-excited giggly boat babes.  One of them tries to talk to me in a knowing way about my Stage IV cancer.

Apparently these are "pre-med" students.

Otherwise known as giggly self-absorbed titillated asshole undergrads getting off on watching my procedure.

Fuck pre-med students.   

(Is the doctor banging these girls?)

Why do I feel so violated?

Is anyone in charge of teaching these girls boundaries?


Thank God the doctor keeps these girls out of the room once he arrives.  The company of his two assitants is much more professional and mature.  And the conversation is great.

Chapter 3 - Can't you hurry up and get out of here?

Back in the recovery room, I'm relaxed and happy.  The sedation was perfect.  The procedure was painless.   The doctor was thorough and worked carefully with the pathologist to ensure there were enough samples and the correct samples for analysis.   And if everything else goes well, I'll just forget about the annoying boat babes.  I just want to sleep.  I send a few texts to Francois and to Delphine.  Francois needs to come pick me up and Delphine might have to walk home from work.

Then I sleep.  The nurse brings me a menu.  I still have that queasy feeling and nothing on the list sounds good.  I tell her I'm good with apple juice and water.

She raises the bed just a tad.  It's just enough so that I can use the bendy straws and drink that wonderful apple juice.

I sleep some more.  Ask another nurse for more water.

The nurse walks in at about 1:30.  "Where is your ride?"  she demands.

I'm still feeling VERY whoozy.  Not bad, just very whoozy.

"I don't think I'm even allowed to go until 2:15, right?"  I ask.

At just a couple of minutes before 2:15, before my ride has arrived, the nurse comes in and announces we might as well get all discharged and then I will be ready for my ride.

I WAAAAYYYYY WHHHOOOOZY.

She takes out my IV, gets me up on the side of bed and asks me to get dressed.  I remember it something close to "Let's get dressed, OK?" or maybe "are you OK to get dressed?"

I was suddenly realizing how it felt to be the person who NEEDED a wheelchair to get to the car.     I  wondered how poorly you were supposed to feel when you were discharged.  But I can rally.   If a professional thinks its possible, I'm game.  I'll try.

I sit on the side of the bed.  I'm not feeling good.  I stand up and feel immediately worse.

I sit down again on the for end of the bed.  I feel nauseous.  I'm weak.  The nurse call button is nowhere to be found.  I creak ...heeeellllllppppp...   I decide I should pull the laundry cart over and try to barf into that

And then DANDELIONS!  Fields of dandelions and sunshine!  It's so beautiful and peaceful here!

And suddenly five beautiful strong nurses and pulling me away from that beautiful field.  Why?!  Why!?

I've face planted, eyes first, arms at the side, butt in the air...  In the way that only those surgical back opened gowns can do justice to.

She never asked how I felt.  She never asked me if I was feeling dizzy or if I had any hesitation about getting up.    I had no reason to get up outside of her urging me to get going.     I would have been perfectly fine sleeping another two hours.

Of course after that, there's ultrasounds and cat scans and worry.  Is there internal bleeding?   Can we get her blood pressure to stay up?  Does she need to say overnight?

The idea of getting caught in that place overnight was a bit anxiety producing.  Will I be safe here?

They pumped me full of water and fed me some crackers and cheese.  The world began to feel much better.

Coda

There's a final piece to this.   There are bricks in the wall -- the scheduling hot potato, the nurses who twittered, the boat babes in the surgery room, the can-you-get-out-of-here-already-fainting-episode.   But the cement in the wall is the subtle racism that followed my doctor around.  The staff teased him and characterized him as 'hiding' and 'scurrying'.  The light bantering at his expense was not counterbalanced with the formality and respect I would need to reassure me.  

I saw at least two different white women partake in this jestering.  While one of them may have had a professional or personal friendship to justify the banter, the other, clearly, did not.  And even if the relationship is close it does not deny the racism in the banter.

It;s unprofessional for staff to joke about a doctor with a patient in a way that diminishes that doctor.  And I cannot imagine the staff joking with me, a patient, in that way about a White doctor.    Even a smaller, White man would not be teased as casually and as freely as this doctor was teased.

And he did a damn fine job of ensuring I felt secure and that I left safely -- despite the staff.