I’ve searched and thought about the right words to describe this: going to Jeff’s first oncology appointment.
May 1, 2018 was sunny. We drove to the appointment about 20 minutes away, in part awkward-silence, part awkward-conversation.
Surreal is one of the words that comes to mind. Walking into that oncology waiting room was surreal. I still didn’t think all of this applied to us. I looked at other patients and felt badly for them, since I knew they probably didn’t have the resources or know-how of our camp, and since Jeff might make it out of this alive. If anyone in that room had a chance – based on resources, willpower, love, sacrifice, and know-how – it was Jeff.
From the moment Jeff told me he had cancer, my whole body hurt. The best way I can describe it is walking through life with those velcro weights on your wrists and ankles. Until that moment, I absolutely, one hundred percent, underestimated the type of havoc that anxiety can wreak on a body. I lost 10 pounds in the first month after Jeff’s diagnosis. On this day, driving to the oncology appointment, I ate a Cliff bar because I knew I needed to eat. I can say now – in retrospect – that there were many things that Jeff and Barb and Randy and Trish and Scott and I did because we knew we had to, because we knew we had to keep going. We ate and slept and took shifts and took turns driving Jeff downtown because we knew it was going to take all of us to get through it. And it did.
So there we were. Jeff checked his phone incessantly. He would do this throughout his treatment: try to disappear in the apps on his phone, in e-mails, in anything that resembled real life. He fidgeted with the little plastic piece of his phone case… the one that protected the bottom plug in… when you put it in the little hole, it had a satisfying moment where it fit into place. Jeff used that as his fidget. The protective plastic piece would be hanging on by a small, thin piece of plastic by the time December rolled around. But Jeff still checked his phone all the time… looking for pieces of his real life.
I had my Chromebook to take notes. I sat there, trying to pretend like it was any other doctor visit.
“Okay, Jess. We’re here to see what the doctor says. Maybe it’s not that bad. Maybe it’ll be okay. It has to be okay. It does. You’re just gonna go in there, and you’re gonna take notes, and you’re going to figure this thing out. It’s going to be rough, and it’s going to suck, but it’s going to be okay.”
Looking around, there were pictures of Dory the fish – blue and yellow and smiling – that said, “Just keep swimming.” I remember being irrationally angry. Like, how dare you minimize these people’s feelings with a stupid fish and a stupid saying. Of course they’re still swimming. They’re here, aren’t they?! I wanted to rip every one of those stupid posters – which had been printed from a cheap color printer and taped to the wall with Scotch tape – I wanted to rip those stupid things off the wall… along with all the other stupid pieces of 8.5×11 sheets of paper with stupid platitudes that make cancer seem like a bad ankle sprain. They were stupid.
Jeff was the color of Dijon mustard by now. We sat down in a typical clinic room. We waited for the doctor. When she came in, her affect was… professional but cold; concerned, but also a sort-of oh-I-feel-so-sorry-for-you kind of removed concern.
“So, how did you get to this point?” the doctor asked.
Jeff went through the most recent events.
“I had paronychia, so I was taking an antibiotic that upset my stomach. Then, I woke up yellow. They didn’t find anything in the hospital, so I went for a follow-up. The CT ordered by my PCP showed a mass, and a biopsy brought us here,” Jeff said.
I remember thinking, “Um-hum. Um-hum. See that, lady? This all has an explanation. Listen to what he’s saying. We shouldn’t be here. Jeff doesn’t have cancer. If you just listen closely, this is all a misunderstanding.”
Unearthly is another word I’ve tossed around. Living in an alternate universe with no rules.
She typed and listened and typed, taking Jeff’s dictation like a stenographer.
“Good,” I thought. “We’ll get this straightened out.”
After she was finished typing, she got into it: An adenocarcinoma has a glandular appearance that likely comes from somewhere else. Few cancers begin in the liver, but many metastasize to the liver.
“So, did it come from somewhere else?” I asked.
“A PET scan will help us determine staging. On the CT, there were no other suspicious areas that we saw outside the liver. But these areas don’t always show up well on a CT. The concern is from the pancreas, up.”
“But if it’s outside the liver… does that mean it’s Stage IV?”
“But if it’s in the liver… then it might not be?”
“The PET will help us determine that.”
I felt sick. I could tell Jeff was stressed: he would ordinarily comfort me while I was stressed, but he didn’t have that to give. He was stoic. I knew to leave him alone, even though I wanted to say, “We’ve got this! We can do it! We will find you the help you need! Screw this place and its stupid Dory posters!”
A nurse navigator came in the room and was much more warm and compassionate than the doctor. I don’t care what anybody says, you shouldn’t be in oncology unless you are willing to hold a patient’s hand while they’re crying. Or give them a hug. Or show some humanity. I don’t care how smart you are… if you can’t do that, then do something else that doesn’t involve contact with people who are living with the idea that they have an expiration date. We all do, of course. But most of us are blessed enough to ignore it.
The nurse navigator tried to soften the blow. Then, she discussed specifics: how to schedule the PET; how to schedule an EGD so they could stent Jeff’s bile ducts; how to get all of this rolling. She walked us to a phlebotomist who drew Jeff’s blood. They ran the results right there.
Jeff’s CA 19-9 was 23,112.5 U/mL. The normal range is less than 37 U/mL. CA 19-9 is a cancer antigen that is often seen and tracked in pancreatic cancer. This is something we would hear often: that the biology of Jeff’s tumor was strikingly similar to pancreatic cancer.
We left that appointment knowing that we had one at University of Chicago. We said we would never go back to that medical practice: it seemed they had already sentenced Jeff to death. The way the doctor looked at Jeff, looked at me. There was no hope there.
Intense is another word I’ve thought of. Surreal. Unearthly. None of them fit. How in the world do you describe someone telling your spouse that he has cancer? That it’s bad. That it’s probably Stage IV. It’s… it’s… indescribable. But that’s a cop-out. The truth is where it always is: in the details.
Walking out to our car, I was holding Jeff’s hand. I looked at him.
“I’m not dying,” he said. His inflection was on “dying”… like, in response to what I must be thinking. Which was that he was dying. He had taken my look and responded to it.
And he had read me correctly.
I wanted to say, “Yes. You are.” But I couldn’t. Partly because I couldn’t make him face that. Partly because I hoped he was right. And partly because I knew the minute Jeff told me he had cancer, our relationship had fundamentally shifted.
We drove home; played with Jake and Kate until they went to bed; and then talked with Barb and Randy about the appointment.
Sad. Cold. Clinical. Isolating. Add those to the list of words I’ve considered. I even thought about combining them: sadly clinical? Nah. Intensely surreal? Nope.
Elisabeth Kubler-Ross wrote, “Even with lots of warning and preparation, death is an unbelievably difficult event… we all know that we will live and we will die, because we see beginnings and endings all around us in nature. We can accept intellectually that everything has its own season and time. But it may be harder to find peace in a world that regards autumn as the time only when the ground is covered with old brown leaves. How can we understand when green leaves fall?”
I still have no idea. How to understand it. How to describe it. All of it.
But in the meantime, I’m still on the hunt for the right words. Because finding the right words is a sacred thing. Those words become the story we tell ourselves, and the story we tell ourselves… that’s the person we become.