Memories Suffering

Keeping Score

I remember reading something somewhere (that’s one hell of an intro for you!)… it was about cancer and grief. It said something like, “Don’t rob someone of the joy of doing something for you.”

I can almost pinpoint when I learned that lesson last year. I suppose I’m still learning it: how to ask for help.

On May 8, 2018, Jeff had his first bile duct stent attempt. That day is vivid. When he was having the procedure, I sat by myself in the 7th floor sky lobby at University of Chicago. It’s beautiful on that level; they even have a harp. There are undergrads and grad students studying. There are couches and the ceilings are high and there’s an almost panoramic view of the city and lake. I sat in the most private area I could find, with a view facing southeast. I called Aunt Tracy. I was shaking. I didn’t even really know what to say, but I was inconsolable.

She was at work, but she sat on the phone with me.

“Do you want me to come up for Jeff’s appointments on Friday?” she asked.

I hesitated. I knew that would be inconvenient. It would require her taking a day off work and driving up from Indy.

“Yes. Please. Could you please come up here?”

So, she did. She drove up Thursday night.

But that week – the week of May 7 to May 11 last year. That was a long week.

Monday was the appointments with Drs. Pillai, Baker, and Sharma. MRI and MRCP.

Tuesday was the bile duct stent attempt. I say ‘attempt’ because it temporarily worked, but then it ‘migrated’ and his bilirubin went back up. To 27 mg/dL.

Sometime Tuesday night and into Wednesday morning, Jeff was in severe pain. I had already missed two days of school, so Barb took Jeff to the hospital and I went to work. Jeff had pancreatitis.

Jeff was in the hospital Wednesday and Thursday at CDH.

Friday, we went back to UChicago for his PET and CT scan.

But Tuesday. That’s the day I decided that I had to ask for help.

That day was awful. Jeff and I were both terrified. I could narrate how we drove downtown. How Jeff stood around a ketchup spill, after notifying the appropriate people to clean it up. How we went and checked in at the main desk and learned Jeff’s code for the TV screens that displayed patient status – JT7546 – a number I would memorize over the coming months because he would have so many procedures. I could tell you all about that. But the most dominant memory of that day is how vulnerable Jeff seemed.

I wanted to picture Jeff as he had been a year before, when our family took a trip to the Outer Banks. Our house overlooked the Atlantic. With that backdrop, every picture we took looked like it was out of a magazine. We had gotten into a groove with our family. He was happy. I was happy. Our kids were happy.

But that day. He was yellow. So yellow. You’ve never seen a person that yellow. His skin. The whites of his eyes. Strangely, though – compared to how he was at the end – Jeff still looked like himself at this point. Sure, he’d lost some weight. But he was still Jeff. He still talked the same and thought the same. At the end, he didn’t sound like himself. He didn’t think like himself.

So we were checked in. We waited. Our buzzer – just like the ones they use at Panera – lit up, letting us know they were ready. We took the elevator to the 5th floor. I think Jeff and I were both subconsciously convinced that if we followed all of the rules just right… he’d be okay. We listened to every nurse. We took notes. We asked questions.

Jeff signed the consent. One of the main risks was pancreatitis, which “nobody gets” and the nurse assured us, “If you get pancreatitis, you’ll want to die… it’s that painful.”

At the last minute, a fellow with interventional radiology came in with a consent form to sign… for a percutaneous biliary drain “if the procedure didn’t go as expected.”

Still hopeful that Jeff could have the stent internalized – and not entirely sure how an external one would work – we asked lots of questions. Eventually, Jeff signed the consent for what was described as “a last resort.”

When it was time for Jeff to be wheeled back, I wanted to scream, “NOOOOOO!!!!!!!!” Instead, I packed up my stuff and walked the opposite way. I stopped and looked back, and again, was struck by how vulnerable Jeff looked. I hated it. I still hate it.

That image of Jeff – sitting in that hospital bed, with IVs coming out of his arm and with cancer growing inside him – was too much. I went in the bathroom and cried a strong, silent cry. I couldn’t scream and hit things like I wanted to. I tried to calm down and come out several times, and I’d make it a few steps out and have to go back in.

That’s when I went to the 7th floor – to wait – and I called Aunt Tracy, inconsolable. It started to dawn on me, just how close a tightrope walk we were walking. I visualized him on that procedure table, with a tube down his throat, and I hated it. I didn’t think Jeff was indestructible, but I also didn’t think of him as vulnerable. I didn’t want that for him. I didn’t want it for me. I didn’t want it for our kids.

I checked the TVs over and over again. I paced around. I tried to grade papers — hilarious I thought that was possible. I ended up just sitting there, in the most private area I could find, staring at the floor. I’m not even sure I blinked.

When my Panera buzzer lit up again – to let me know that Jeff’s procedure was finished – I rushed down to the 5th floor. I wanted to run right past the front desk person and into the back, screaming, “JEFF!!! I’M HERE! ARE YOU OKAY?!”

Instead, I waited for someone to come and get me. She walked me back to Jeff’s recovery room. His knees were slightly bent and he was laying on his right side. He had a sort of grimace on his face and his brow was furrowed. I so badly wanted to look under that blanket: did he have a tube coming out of him or not?!

But I didn’t dare. Instead, I fished for his hand and held it.

I scooted a chair as close to his bed as I could, and I held his hand and put my head on his bed. I have no idea how long we were like that.

I looked up, hoping that a sign of my husband would appear. I kissed his forehead and rubbed his head. I didn’t want to disturb him, or make him uncomfortable, but I so badly wanted to lay next to him and hug him and lay my head on his chest as we had done for so many years.

Dr. Siddiqui – who had performed the procedure – came in a while later. At this point, it was evening. Probably 6:30 p.m. We had been there all day.

Jeff didn’t hear much of her report, but when he first realized Dr. Siddiqui was there, he perked up.

“Inside or outside?” he asked.

“What?” she said.

“Is it an inside or outside stent?”

“Oh! Inside. Just inside this time.”

Jeff and I both breathed a sigh of relief. We thought we had dodged a bullet. We thought maybe we had a big win. Maybe we could avoid that horrible external drain and all the quality of life issues that go with it.

Dr. Siddiqui confirmed one measurement of the tumor was 6 cm. The endoscopic ultrasound found multiple malignant nodes around the main tumor. The right side of Jeff’s liver wouldn’t fill with contrast… too much tumor there.

She explained that larger metal stents can be placed, instead of the plastic one placed that day, and those metal stents are more effective. But they’re also permanent. They grow into the tissue, and then surgery isn’t an option anymore.

The news that day wasn’t good, but it wasn’t anything we hadn’t already heard.

Jeff’s recovery, though, kept taking longer and longer. The nurse suggested – compassionately – that if Jeff couldn’t feel well enough to go home, that they would admit him. Jeff didn’t want that.

Finally, he decided he could sit up. With his legs dangling on the right side of his bed, and with me standing right in front of him, Jeff put his head on my chest. I rubbed his head, and hugged him. At one point, the nurse came in to move us along.

“Can you give us a minute?” Jeff asked.

I was perfectly happy to stand there for as long as he wanted.

“This just feels nice,” Jeff said to me.

“I’m glad.” I hugged him.

Sometime around 8 p.m. or so, we got in the car. We drove home. As we pulled into our neighborhood, Jeff threw up.

Barb and Randy had picked up the kids and put them to bed. It took all of us to get Jeff upstairs and into bed. He wasn’t there for long: he threw up several more times. I looked at Barb, remembering what I had decided earlier in the day about asking for help.

“Could you spend the night?” I asked.

“Absolutely,” she said.

Sometime near 4 a.m., we called the emergency number provided during Jeff’s discharge. The pain became more acute. We worried about pancreatitis. Around 5:30 a.m. – after trying to avoid the inevitable – Barb took Jeff to CDH. I took a shower. I had to go to work.

And that’s why we existed in days. That’s why I decided to ask for help.

I’m not proud to say that I used to keep score. A mental list that I had repaid whatever goodness was shared with me. If you had asked me, I would have denied it. I would’ve seen it as simply being polite, or being good. I would try to judge – weighing carefully – if my relationship or past interactions with someone warranted a specific favor or request. A ridiculous calculation.

But thank you, John Steinbeck, for the eternal wisdom of East of Eden and for reminding me, “And now that you don’t have to be perfect, you can be good.”

I have said, and I believe it to be true, that I have far overdrawn on whatever goodness I thought I was due. Keeping score isn’t possible anymore. And besides, I’m sure my scorekeeping was lousy anyway. As Jeff has taught me, life is most decidedly too short to keep score.

I’m pretty good at asking for help now. I hope I’m also getting better at giving it.

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