Life is uncertain

...better eat dessert first!

The first time I heard this phrase was from a patient I was visiting who had just enrolled in hospice. Vivian was sitting on the couch in the sunny living room of a well-tended Board & Care facility. Her daughter sat on a cushioned armchair beside her.

It was noon. Time for lunch.

As the other residents began to be relocate to the dining room, Vivian stayed contentedly in the sun, like a cat purring on the sill of a window. Her daughter smiled as I looked to her for insight.

As if on cue, one of the staff appeared.

“Lunchtime Vivian!” the staff member announced handing Vivian a spoon and napkin before placing a china bowl full of ice cream in her lap.

Vivian’s purr grew louder. She turned to look at her daughter. Though no words passed, the acknowledgement was clear. When Vivian looked toward me, her Cheshire-grin emphasized her feline-like contentment. She then spoke the only words I would ever hear her utter.

“Life is uncertain…better eat dessert first!”

She died a week later.

Vivian’s phrase has since become a family mantra of sorts… at least for our children

I’ve noticed that the first part of the phrase has recently formed deeper roots for me… roots that are growing because of the story I am about to continue.

Before I do, I want to acknowledge this principle of uncertainty¹, by way of describing where I am.

At the time I began writing this installment, I had just boarded an Airbus A320² on my way from Denver to Madison.

I live in neither location.

I came to Denver to attend a family memorial and am going to Madison to be with my mother and youngest son, Kalel, who are…were attending Grandparents University,³ together. Kalel had elected to study renewable energy. My mother, unintentionally, became distracted by her own course on gross anatomy and decided she needed to explore the hospital, and got herself admitted.

When you look at my calendar leading up to and through this weekend it never included being on this beautiful plane.

Yet HERE I am. 10,000 feet in the air⁴ heading to Madison to be with my mother and son. I am here to support my mother safely navigate medical care while away from home with plans to travel to Canada in little over a week, while simultaneously helping my 14 year old realize his dreams to go to Burlington to visit his sister via Charleston on a road trip up the Eastern seaboard with his Uncle.⁵

I am HERE. And what matters most is no different than what I was navigating when this story began⁶.

If you had seen my calendar 7 days ago⁷ it would have shown that I planned to be working in the hospital caring for people experiencing serious illness. No footnotes, asterisks or parentheticals were tucked in the margins to create space for an alternate itinerary.

Packed calendars are no place for uncertainty to arise.

I’ve come to realize that uncertainty rules the day, as well as the night, afternoon and weekend. Whatever I think I am doing flows better when what I intend has room to bend.

7 days ago, my new practice of bending began. First as bobbing. Bobbing, counting and spitting as I worried my worry would cause others distress.

Life was uncertain…I didn’t have the ability to finish the sentence.⁸

After reading my hand-written note neatly penned on the neon orange sticky notepad describing the evolution of my symptoms for the past 22 hours, Andy gave me three options:

“I can prescribe you some antibiotics and we can see what happens,” he said calmly adding, “This is my least favorite option.”

(This was my least favorite option too, first, because it entailed swallowing. And second… well, 2nd was irrelevant since I would never get past 1st).

I looked him in the eye waiting to hear what I anticipated would be the next 2 options.

“We can go to Urgent Care once they open in 3 hours.”

I didn’t blink, swallow or breathe as I waited for the final option.

“Or, we can go to the Emergency Room now.”

When all I could do was spit he made his declaration.

“ER it is.”

He tapped on Kalel’s bedroom door on our way to the car.

“Kalel, mom’s not feeling well. I’m taking her to the hospital. You’ll need to get yourself to school.”

I listened for the groan of a sleeping teenager, took my WORRY blanket, spit cup, driver’s license for ID and insurance card, slipped into my clogs and went to the car.

Andy was grappling with his own uncertainty as we drove.

Which ER?

I had assumed he was taking me to the one where we work. His concern was Time. As in, which would be able to evaluate and treat me the fastest. He didn’t ask my opinion because he knew I couldn’t answer.⁹

He drove me to the hospital where we work. Told me to get out while he parked the car.

My certainty was challenged again.

I had assumed as WE drove that HE would speak for ME once we’d arrived. Explain why I was HERE. Except he wasn’t with me which left me “speaking for myself.”

Going through hospital security:

“Are you here to see a patient or for yourself?”

I motion to write.

The officer furrows their brow.

I tap my own chest.

They let me pass.

I reach the check-in kiosk.

Same question.

Same response.

I hand my IDs to the receptionist. They ask why I am HERE. I motion for a pen.

I write: “sore throat.”

I feel ridiculous as I return the clipboard to them.

They tell me to take a seat.

That’s when I notice that the waiting room is empty.¹⁰

Before I reach a chair a nurse calls me into the back.

Same question.

I spit out my saliva. I motion to write. As they ask questions, it hurts too much to nod or shake my head so I start giving thumbs “up” or “down” signs instead.

Within a few minutes they ask me to follow them to an exam room.¹¹

I was certain I would be in the waiting room for hours, expecting to be told to return to waiting after the nurse’s assessment. I was certain I would not be in an exam room in the ED before sunrise.

Once inside the windowless cubicle, something began to shift. All sense of time vanished. Being certain became increasingly inaccurate. Irrelevant. Which did not seem to increase any sense of concern. On the contrary. Being uncertain allowed me to be present to what was so. Which was/is Uncertainty.

Andy had little trouble finding me, arriving with his hospital ID badge in plain sight. When a new nurse arrived to introduce himself and ask me my story, I turned to Andy to answer.

He replied as if he’d memorized the neon sticky notepad.

The nurse looked at me, “You look really uncomfortable. I’m gonna ask the doctor for some pain medicine.”

My eyes went wide. Andy noticed.

“You should know,” he started, “she’s a palliative medicine doctor Here, so she’ll likely have some opinions about the medication you want to give.”

This was a very unusual move as all doctors know that once a medical team knows you’re a doctor, they start to defer care decisions to you, out of deference and respect. Except, no matter how expert you think you are or may actually be, when you are sick, you don’t know Jack.¹²

Moments later the throat specialists arrived.

“We need to take a look”, the attending¹³ said after reading the notes I’d transcribed to the clipboard pages.

I opened my mouth as wide as I could with a silent wince.

Within seconds he declared, “Nope, not a PTA.¹⁴ That’s for certain.”

“Then what?” my husband asked in unison with my mind.

“We’ll have to take a deeper look. Use the scope.”

Under normal circumstances, putting a camera through my nose into my throat sounded like torture. These were not normal circumstances. Uncertainty lent itself to my becoming uncertain about how bad I was certain this procedure would be. Instead, I became curiously calm.

“We’ll be back in a sec.”

I was good at counting seconds. They didn’t lie.

“We’re going to spray some numbing medicine into your nose. It may taste a bit sour. ”

I spit out my now bitter saliva.

The doctor’s voice was as smooth and calm as a masseuse welcoming me to relax and trust their touch will soothe what ails.

He was right.

The scope was as painless as it was revealing.

“Oh! Well! That explains why you hurt so much,” the attending said.

He pointed to the display screen for all to see. I couldn’t see anything and neither could Andy because we both had no idea what the way-down-deep inside of a throat was supposed to look like.

The doctor went on to explain.

“You know how people say when they lose their voice they have laryngitis?”

This was a rhetorical question.

“Well, mostly that’s got nothing to do with the larynx¹⁵.”

Andy and I waited for the punchline.

“What you have HERE is massive inflammation of your larynx. Actual Laryngitis.”

He turned to his colleagues saying things I could not make out before turning to face Andy and me and saying, “We’re gonna keep the scope here and be back in a few minutes to have another look.”

And then they left.

While I felt even more sheepish being in the emergency room with what was formally declared, Laryngitis, it occurred to me, regardless of what was to come next, I was not going to be able to effectively communicate (i.e. talk) with my palliative care team or our patients and families today. So I wrote the following series of messages to my teammates:

First, at 7:58am, I wrote the following email to my team covering the inpatient palliative care service:

Good morning, Team. 

I am happy to say my COVID test came back negative. I am sad to say I am in the ED with severe sore throat pain that has escalated to the point I cannot talk. I am afraid I cannot round with you today. I am very sorry to miss you and burden other clinicians. I promise to keep you posted. 

With Gratitude for all your support this week,

Dawn

At 8:12am, I texted the inpatient clinical director:

Good morning. I cc’d you on an email to the team just now. I am afraid we need to call in coverage for me today. I am in the ED with worsening sore throat and inability to talk. I am so sorry to burden you and the team and deeply appreciate your support.

followed by this email to the department business administrator in charge of payroll:

Good morning, I need to update my days worked this week. I am currently in the ED and do not anticipate being able to work today. I have let the team know. Thank you, Dawn

The pain medicine arrived shortly after I pressed the final send. Kicked in quickly.

The throat doctors woke me up. It had been 26 minutes since they’d left.¹⁶

“Okay. You know how this goes. We are going to repeat the exact same thing. Medicine in the nose. Then the camera. Are you ready?”

I give a thumbs up.

With the camera in place, the attending doctor says, “Okay. No worse.”

Once again, Andy and I wait for the punchline.

1. This is not necessarily related to the Heisenberg Uncertainty Principle though in another universe it may.

2. I realize that’s redundant for those in the know; yet for my ear listening for poetry in the prose, the extra “A” works.

3. Can’t make this stuff up! Promise:)

4. The bell just sounded alerting passengers that it was now safe to use portable electronics such as laptops and other electronic devices….

5. A select few airlines allow 14 year olds to travel as adults without requiring a guardian to drop them off and pick them up at the gate. None of those airlines fly out of Madison. Kalel was stuck. He was not allowed to be in the hospital “unattended” and was not allowed to check into a hotel “unattended.” WE are indebted to the Wisconsin Alumni Association team for over-extending themselves and caring for Kalel and my mother until I arrived in Madison.

6. Given time is relative and for some it’s been awhile since this story began, you may wish to refresh yourself by starting at the beginning which you can find HERE.

7. As noted above, similar to the Heisenberg Uncertainty Principle, the Relativity of Time is being invoked metaphysically rather than the mathematically. Please refer to the installment titled Time for greater context.

8. Unusual for me in that moment, I was not interested in eating dessert. A clear indication, were I thinking clearly, I was not well.

9. I had not included my analysis of the ED nadir in my neon orange sticky pad notes.

10. My crude calculus was a success! Relativity and Uncertainty, here we come!

11. This is lightning-fast anytime of day/night/month/year. Yet in a pandemic, I am truly stunned.

12. Just ask Andy how things went while making his own medical treatment plans to diagnose a perforated appendix. Don’t bother. I will tell you. Terribly! Fortunately, he survived and has learned his lesson. And so have I… (Foreshadowing:)

13. Attending, aka doctor-in-charge is a term used in teaching hospitals aka academic centers, where lots of different levels of learners (medical students, brand new doctors called interns, less new doctors called residents and doctors learning to specialize in a specific field of medicine called fellows) huddle in groups as they pack into tiny rooms to get a glimpse of illness and healing.

14. Peritonsillar abscess. For a refresher on why I was concerned this was the diagnosis have a look at Time.

15. Most medical conditions get their names from the anatomical location where they occur PLUS “itis” meaning inflammation. So if your appendix is inflamed, you have appendicitis. If your stomach is inflamed you have gastritis. If your larynx is inflamed, you guessed it, I have laryngitis. Which still sounds pretty silly to me to warrant being in the ER.

16. 26 is a very specific amount of Time that, in time, I would later come to appreciate…(more foreshadowing;)