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.  🙂

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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.

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.

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.

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.

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.