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?
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.
1 comment:
sweetie,
i'm so sorry you have had such a horrid experience with your testing this week. isn't enough just about enough? you must ALWAYS have an advocate with you... and a driver! i know they tell you all will be fine and you can certainly drive yourself, but i doubt that is EVER true! and 4 or 6 ears are ALWAYS better because 2 ears just can't hear it all. there are so many of us who are here and need to feel needed because we have needed you so much and you have given so much of yourself to us. we will be there! run the flag up the pole!
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