I love when – in the course of a day – I remember a Jeff-ism. So many things make a person, a person. And they all seem so natural while the person is alive. But when they’re gone… some are difficult to remember.
Jeff Thomas Fun Facts Version Deux:
- Jeff loved to look at roads that used to go somewhere, but were either abandoned or not functional. He used to say, “I wonder where that road used to go. Who drove on it? Why did people stop driving on it?” Or paths. Anything that used to be a thing people would travel on… he was curious about it.
- Jeff hated grass that grew in water. Anything swampy. One time, Barb and Randy brought back some swamp grass from Fox Lake or Grass Lake or Nippersink… one of those. I think he was in high school. Barb and Randy put the swamp grass on the front porch so Jeff would have to walk over it to get into the house. As Barb remembers it, he walked up the steps and screamed.
- Jeff hated that I always fidget with my hands. If we were holding hands, or if I was touching him, and I started to fidget with my fingers, he would dramatically toss my whole arm aside. Sometimes, I didn’t even realize I was doing it, and he would get really annoyed, and I’d have to say, “OKAY! I’m sorry! I didn’t realize! Please still hold my hand!”
- Jeff never wore a watch. Or any jewelry, except his wedding ring. He used to take his ring off and spin it on the table, because it had this bevel that allowed the ring to spin for an amazingly long time. Even though I urged him to really think about it, Jeff insisted that he be buried with that ring. But when he first started wearing it, he kept having problems with the skin under his finger. After over a year of trying to treat this apparent allergic reaction with all sorts of medications, we realized that it was because Jeff didn’t rinse the soap off from under his wedding ring… that was it. We laughed about that for a long time.
- Jeff hated having his thumb trapped. If we were holding hands, my thumb had to be on the bottom. And he constantly – especially when he was nervous – would move his thumb around. It drove me nuts.
- Jeff’s voice increased by dozens of decibels when he talked on the phone, especially for work. If Jeff had work calls after the kids went to bed, I’d be sitting down in the family room going, “SHHHH! If you wake them up, I’ll take you out!” Jeff also had a distinct “work laugh” which was different from any other laugh he had in “real life.” I’d hear him laugh on the phone, and if there was any question whether it was a personal or work call, I’d know immediately from the laugh.
I’m still putting all the pieces together. Remembering pieces of our life before cancer. Reconstructing what happened last year. Reliving parts of it.
Last Wednesday, I met with Dr. Pillai. She was gracious and concerned and kind and patient. She met with me for an hour and a half.
Appropriate timing because, on May 7 last year – a Monday – we first met her and Dr. Baker and Dr. Sharma. They gave us so much hope.
Leading up to that day, we spent a bittersweet weekend with my aunts and cousin. The weekend before, I didn’t know Jeff had cancer. Now, I did. Being home with the kids was brutal. My aunts had bought party supplies for Cinco de Mayo, to try to lighten the mood. But they still sit – unused – in my basement. The atmosphere was strange at our house. We tried to carry on, but Jeff’s jaundice and accompanying fatigue constantly reminded us that things were… not okay.
I remember laying on our family room floor, watching Miracle while Jake and Kate took naps. I remember I wanted so badly not to cry, but avoiding it only made it worse. Like putting a dam in front of a growing body of water: holding it back just makes the release more intense.
I remember talking about how not knowing – the extent, the placement… everything – how that was so horrible. True purgatory.
Aunt Lisa said something like, “Well, there are a few things it could be. It could be contained. It could be somewhere else. Or it could be all over his body. But whatever it is, you can’t change it now. Knowing will help us know how to move forward.”
She was right. It was like worrying about an exam even after finishing: like, praying about it could change the results. Not likely.
That Saturday, we walked around downtown Geneva. There’s the most adorable picture of Jeff with Kate on his shoulders. Those days were so. hard.
Monday morning rolled around. We drove downtown. An anxious drive… feeling like I’d swallowed a watermelon whole, and that it stuck in my throat and stomach. Jeff drove. I organized papers in the passenger seat: the day before, we’d picked up his medical imaging from the local medical practice. I added it to the Cancer Binder – a black, three-ring binder we used to house all of Jeff’s files – with all of Jeff’s registration paperwork for UChicago.
Our first appointment was with Drs. Pillai and Baker. They said that, from the CT, it looked like things were contained in the liver. The main message was hope… hope for surgery. Hope, even if surgery wasn’t an option.
They said the main tumor burden was in the right lobe of Jeff’s liver… a little in the left. This is consistent with the information from Mayo, which would be shared a few weeks later.
Things get fuzzy… here.
Last week, when I met with Dr. Pillai, she said that a person with cholangiocarcinoma may be a candidate for a liver transplant… if the tumor is contained in the liver and is in the middle of the lobes. Jeff’s beginning situation seems to meet that criteria.
I think the major variable was… the portal vein. In the findings from Jeff’s first CT, it says that the portal vein “appears to be thrombosed.” But when I met with Dr. Pillai last week, I asked about that. Was it always thrombosed? She didn’t think so.
But I’m getting into the weeds with detail.
I remember sitting in that clinic room: me, Jeff, Dr. Pillai, Dr. Baker, and one of the GI fellows. I think, actually, another GI fellow came in. It was a lot of people in one little room.
But I remember thinking, “This… this is the varsity team.”
I was totally energized. I typed as fast as I could on my Chromebook, putting myself through mini medical school, trying to ask questions that weren’t totally dumb. Jeff could sometimes get impatient with how many questions I asked, and he did that day. I mostly ignored him, because I knew we had to know, and I had to write it down. That was hard. It was, after all, his body.
The doctors were all checking their iPhones, getting notifications like crazy. At first, I thought it was strange, but I realized they were setting everything up: that day, even, Jeff had an MRI and MRCP. They set that up as we were sitting there in that room. They set up an EGD for the following day. They arranged for a PET and CT for Friday… they even tried to get it earlier. The urgency was amazing, and I thought, “Finally… people who get it!”
Although the first oncology appointment lingered as horrible experience, I was so thankful we went, so we could compare it to this one. This felt like medicine as it should be. A team of people, who take it as seriously as you do… who take care of shit, because they know you are paralyzed with fear and worry… people who don’t let pride or status cloud their judgment of treatment or reality. I immediately loved all of them.
We left that room and went down to check in for Jeff’s scans. We both basically floated down there… this was the first piece of good news we’d heard. There was something we could do. There was something that could be done, and there were people who wanted to help.
While he was having the scans, I called two people.
First, I called Barb. I told her everything the doctors had said. I distinctly remember her crying, and I said, “We can do this. We can do it.”
Then I called Aunt T. I was sitting outside of DCAM on the Chicago Hospital campus. It was sunny. Warm. Lots of people directed traffic on those busy few streets between DCAM, Mitchell, and Comer Children’s Hospital. I told her everything the doctors had said. We agreed that there was hope.
After the scans, we floated up to our appointment with Dr. Sharma. That appointment was on the 6th floor: oncology. As opposed to the liver tumor clinic appointment, which was on the 5th floor.
I think – and I don’t think I’m unique here – that when anybody has a chronic or terminal illness, you hang on every. single. word. medical professionals say to you. You read into every facial expression. Every test. Everything. All of it is heightened and intense.
So when we got off the 6th floor elevator, and I saw patients waiting for chemo infusions, it wasn’t like the peaceful, 5th floor transplant floor. The 5th floor screamed, “Hey! You might get a liver transplant!” The 6th floor screamed “cancer” and “wheelchair” and death.
The appointment with Dr. Sharma only involved him. No team of people. No sketches or phones dinging or collaborating. Demoralizing: that’s what it was.
I distinctly remember him saying, “This isn’t a good cancer to have.”
I thought, “Okay. Alright. We know that. We can deal with it. Just tell us what to do.”
We left UChicago in a mix of emotions. We had started on a high and ended on a low. The day was draining in all ways: physically, emotionally, mentally. I had barely remembered to eat all day… we got there at 7:30 a.m. and left around 5 p.m. Emotionally, the highs and lows were not unlike the days Jake and Kate were born. Everything felt that intense. Their birthdays were days of life. This was a day of worrying about death, and if life was possible. And mentally, I had learned all about bile ducts and hilar cholangiocarcinoma versus intrahepatic versus distal. I learned what has to be in place for a liver resection; the various types of chemotherapies and when to use them; the probable anatomy of Jeff’s tumor and its placement; the types of scans used to track growth of a tumor and the pros/cons of each.
Jeff and I were exhausted.
We met our friends Matt and Sonia for dinner. On the way there, I remember driving down Lake Shore Drive. I looked across the console of Jeff’s gray Altima.
“We can’t control the results of the PET on Friday. But we can control how we react to it,” I said.
“We can do this, Jeff. And we’re not going to let this tear our family apart.”
“What?! What do you mean?” he said.
“I mean that we have to stick together. We have to be on the same page. We have to be patient and informed, and we have to communicate. This is going to take all of us.”
We were silent for a time.
“Ultimately, I know this is your body,” I said.
“Yes. But it’s our lives,” he said.
And in that moment, I fell in love with a whole new version of my husband. I still think that’s one of the bravest, most loving things he ever said.
We met Matt and Sonia at our favorite pizza place, but nothing sounded good. I remember crying during dinner. Everything felt… and here’s where I can’t find the word again… surreal. Unearthly. Clinical. Isolating.
We got home late. It was dark. Barb and Randy had picked up the kids and put them to bed. I remember sharing the Cliff’s Notes of the day, and agreeing to get into more details later. The exhaustion was merciful: we couldn’t talk about cancer anymore. We had to go to bed.
The next day was a whole other Vitamix puree of emotions: Jeff had his first EGD and bile duct stent attempt.
But that day — the first time at UChicago — that day, I learned that each day had to be its own compartment. Life didn’t exist in years anymore… there was no planning for 2019. Life didn’t even exist in months anymore… there was no planning for summer 2018. Even a week out seemed ambitious to plan. Days. We existed in days. Even hours sometimes.
It’s exhausting to live life that way.
I’ve seen all the platitudes about, “Live each day as your last!” or, “Make each moment count!” But I can’t see those now without thinking about how perfectly exhausting that would be. Not to mention unrealistic. I want to revise those sayings to something like, “Life is a series of small choices. Make good ones at least 80% of the time, and you’ll be okay.”
I didn’t learn that day, but I have learned since then, that a life well-lived is not necessarily a long life.
Elisabeth Kubler-Ross wrote, “We have often spoken about unfinished business with the dying as they try to die knowing they did the best they could, but no one gets to finish everything. The dying ultimately must accept that their lives are complete just as they are.”
Jeff’s life – though not as long as it should’ve been – was complete. He didn’t get to do it all, but he got to do a lot. And we got to do some of it with him! How cool is that?! I am so thankful for that gift. So thankful for my amazing marriage and the two amazing kids I got from it, and the amazing Thomas family who is now my family.
Kubler-Ross also wrote, “Life is hard, life is a struggle, like going to school where you are given many lessons. The more you learn, the harder the lessons get.”
I had to read that sentence twice. I highlighted it.
I think Jeff had a pretty tough lesson at the end: how to die when you’re 36 years old and have a young family. How do you accept that your life – which always bent to your force of will – will not, in fact, turn out as you so carefully planned? How do you endure physical pain that excruciating and still dress up as a Disney character on Halloween… walking around passing out candy while getting a blood transfusion? How do you reflect on 36 years of life and consider it ‘complete just as [it is]’?
But Jeff was always a quick student. He took it seriously. Whatever lesson he had to learn, I think he learned it. I’m proud to be his wife. I want to go to heaven and say, “Hey! That one over there! That’s my husband! That one! He’s totally varsity team material! Put him with St. Michael the Archangel… he’ll kick butt!”
A few weeks ago, a parent from Jake and Kate’s school – who also used to work at my school – stopped me in the lobby.
“I’m so sorry, Jess. I just found out about Jeff.”
“Thank you,” I said.
The next day, he handed me a card. I read it after he walked away.
In it, he wrote, “Words could never express how sorry I am for your loss. I never had the chance to know Jeffrey, however, I knew him through you. I remember a few years back at Metea. We had a ‘dress up as your favorite hero day’ and I happened to see you that morning, wearing a full construction uniform: a hard hat, safety vest, and work boots. I asked who you dressed up as. You smiled proudly and said, ‘I am dressed up as my husband. He is my super hero.’ I thought that was the most admirable and endearing thing I ever heard, and it was more than enough for me to realize what kind of a man and husband Jeffrey was.”
I don’t remember doing that. And even as I try to summon the memory, the details falter. But I was so touched by the card… so touched that Jeff is remembered that way by someone who didn’t even know him.
I so badly want this to be a sweet and tender memory.
But the hilarious truth is probably this: I probably wore those things because they were easily accessible. Or, I wore them because Jeff probably said – with a shit-eating grin on his face, as I rolodexed my brain at 9 p.m. the night before, for what to wear for ‘super hero spirit day’ – he probably said, “Ha! You should go dressed as me! That would be hysterical!”
That would’ve been a true Jeff-ism.