Every morning – before I put my wedding ring, newly sized, on my left middle finger; and put my great-grandmother’s engagement ring on my right ring finger – I see my engagement ring in my jewelry box. I took it off a few weeks after Jeff died… I wanted to wear it. I still do. But I… can’t.
He gave me that ring 11 years ago, over Memorial Day weekend. It was 11 years ago yesterday.
Of course, it’s a wonderful memory. After he proposed, we went to dinner at our favorite restaurant on the water. I remember that the tablecloths were pieces of big, white paper. They had crayons you could use to draw… I was looking out at the water when Jeff grabbed a crayon and wrote – awkwardly craning his hand so I could read it – “We’re engaged!”
We were so. excited.
Memorial Day over the years has always been full of good memories. Since I’m from Indianapolis – and my family is huge into racing – the weekend sometimes meant watching the Indy 500. It sometimes meant going to an Indy 500 party. Although it’s blacked out in Indianapolis, I have great memories of listening to the race as a kid, laying on the couch in my living room, hearing the radio blare the whir after loud whir that only an Indy car can make as it travels around the turns.
Over Memorial Day, Home Depot has a special deal on charcoal. I had forgotten that until a few weeks ago, when I was out in our shed. I have bags and bags of charcoal from… it must be two years ago. Jeff, always a sucker for a deal, would load up on charcoal, prepared to supply his grill and smoker so they could supply him with fabulous meat in the coming months. Jeff Thomas did not believe in a gas grill or electric smoker. No way.
But Memorial Day last year… that was Jeff’s first round of chemo. He came home that Friday night with a fanny pack full of chemo, which was connected to a tube, which was connected to a spot on Jeff’s chest. The bag slept between us in bed, and I barely heard the frequent mechanical push of chemo into Jeff’s body.
On the Monday before the weekend, Jeff had a checkup with Dr. Sharma. His bilirubin had come down since the second stent attempt: from 27 mg/dL to 20.6 mg/dL. The stent was working. But slowly.
On Thursday, he had the chemo port placed. That was one of the few, straightforward procedures he ever had. It’s wild how those things work. I pictured a literal hole in the chest, where they hook a person up, like in The Matrix. Turns out, it’s under your skin. They thread a catheter, connected to an access point, over your collar bone and into your superior vena cava, which is right next to your heart. It’s really amazing technology – but it is just one of the many ways that cancer slowly dehumanizes a person.
I’ll never forget what the nurse said when Jeff was discharged: “We’ll see you back when you get that thing taken out.” I was so thankful for that — someone who seemed to understand how scary and final all of this seemed. And, spoiler alert, Jeff did have his chemo port taken out. But it wasn’t for the reasons we wanted: it was because the bacteria had colonized there, just as it had in so many other places in his body.
But that Friday… the start to Memorial Day weekend… that’s when Jeff started what we hoped would be the healing part of this process. Although it sounds strange to say, that first infusion was… a good experience? Can you say that about chemo?
I vaguely remembered writing about his first infusion on Caring Bridge… I just went back to the very beginning. I’ve never reread the posts… in the beginning, I’d read the previous one before writing a new one. But I abandoned that practice, prioritizing frequency over repetition.
Turns out I started writing a year ago today. Add that to the list of Memorial Day weekend memories.
A year in review
Things with the first dose of chemo are going pretty well. Jeff is receiving Folfox, which is a combination of two drugs. For one drug, they do a four-hour infusion at UChicago, and then he comes home with a pump that distributes 2.5mL / hour of the other drug over 46 hours.
A strange side effect that we were informed of – but neither of us had heard of before – is sensitivity to cold. And that’s no joke! They told us that it would feel like an electric shock throughout your body, and – if drinking a cold drink – it would feel like razor blades. And, if you couldn’t avoid reaching into the refrigerator or freezer, to put gloves on first. Jeff and I were both surprised when – after washing a load of laundry in cold water – he was hanging up some clothes and discovered that they were not wrong about the side effect. So, no laundry for Jeff. And he’s super bummed about it. 🙂
Jeff also received a steroid to boost the effects of the anti-nausea medication, and that seems to be helping, but is also making it difficult for him to settle down enough to get good sleep. We both agreed that – if that’s as bad as it gets – we’ll take it. The other, more major, side effects are scary and more likely while he’s hooked up to the second drug. He’ll get disconnected tomorrow, and we’ll continue to monitor things closely, to be sure, but the big ones are more likely while you’re on chemo or just after a chemo treatment. Unfortunately, he’s at a bit of a higher risk for some of the scary ones, because of the jaundice, but all we can do is wait and see.
A silver lining from yesterday is that Jeff’s bilirubin is going down because of the second stent. Normal bilirubin is under 1. At its highest, Jeff’s bilirubin was above 30, and as of yesterday, is down to 14. His arms and legs have a normal color now, and we both hope that the numbers continue to go down so he can get some relief from the itching. In an ideal world, the chemo would shrink the tumor enough to not entirely block his bile duct… but, we’ll see.
Mayo is on the horizon, and – as much as Jeff isn’t thrilled about traveling two days after chemo – when Mayo calls, you go. This week will be an adventure, having started with chemo treatment, and then the testing and consultations at Mayo. But, all of this is a step forward to getting on the other side of this.
We told the kids that daddy has cancer, and that he’s getting medicine that is going to help him, but will make him feel yucky in the meantime. We compared it to a shot: it hurts you, but it helps in the long run. That seemed to make sense to Jake. Both kids seem mostly unfazed by it all. I think it has helped tremendously that everyone has tried to keep as much routine in their little lives as possible.
Fingers crossed for another uneventful day of chemo and easy disconnect from the pump tomorrow.
Looking back on this now, I realize how bad things always were. When I met with Dr. Pillai at the beginning of the month, that became clear also. I asked her: why is it that Gem/Cis is the gold standard, when it doesn’t seem to work for anyone? The cholangio community is small, and the patients I know – who are doing well – are aggressive, smart, and have played a large and active role in finding the puzzle pieces for their treatment plans. Gem/Cis is rarely part of it — merely a hoop to jump through so they can get insurance approval for better, “experimental” treatments.
Dr. Pillai said that, just like with any job, you learn how to do it by doing it. That many doctors who work for insurance companies have obviously graduated from medical school, but lack the hands-on knowledge of working with patients for years and years, especially in a sub-specialty like hers. I don’t think these people are bad people – and insurance was such a blessing to us through Jeff’s treatment – but jumping through hoops is the last thing anyone has time for when they have cancer.
I had forgotten about the cold sensitivity. And the fact that Jeff was hooked up to a chemo bag and still trying to do laundry… so Jeff Thomas. But I’m sure I felt like he should be doing it. I hadn’t yet accepted that the house and the kids were MY responsibility now. It still kinda felt like Jeff had a virus that would keep him down for a while, not… cancer.
Jeff didn’t have any side effects from this first treatment. We both saw that as an auspicious sign.
I’ve wondered why Jeff’s story diverged here… from other – who you might call ‘luckier’ – cholangiocarcinoma patients. Dr. Pillai’s answer: the portal vein thrombosis. We found out about that after Jeff’s first round of sepsis… in mid-June.
At the time, I didn’t realize how bad that was. I distinctly remember Dr. Baker’s words were, “We weren’t expecting to see that.”
Dr. Pillai apologized, wondering if she handled that correctly… if she should’ve been more firm. She said she always wonders how to best balance informing patients without taking away all hope. I imagine that is an impossible job as a doctor. But if I ever have a serious illness, I want Dr. Pillai holding my hand. And I told her the truth: I’m glad she and Dr. Baker handled it how they did. If we had known in June that things were as bad as they were… that would’ve been really, really hard. And the doctors had hope — they hadn’t written him off. They had hope.
Jeff had his chemo port deaccessed at a nearby emergency room, since – for reasons I still don’t apprehend – they couldn’t get anyone from home health to come to our house on the Sunday of Memorial Day weekend. After that, we went to dinner at an Italian restaurant in downtown Geneva. I remember that we got arancini: a favorite of Jeff’s because of Aunt Barb.
When I look at the picture from that day, I’m struck by how normal we both look. Just two young parents out to dinner.
And that brings us up to now.
Last night, a friend asked me if – when I remember Jeff – I remember him as sick, or as himself. And the answer is that I remember him as himself. When I look at pictures from the end — like the one from Great Wolf Lodge taken a week before he died — I can’t believe that was Jeff. However quickly it happened, the change was gradual. We knew it was bad. But it was really bad.
And the hardest part about that picture isn’t Jeff. It’s Jake. Look at the way he’s looking at his dad. Just. Look.
If you can believe it, things got even worse after that picture. I remember that when Jeff died, I could see every bone in his face. His nose was so pointed… it looked like it wasn’t human. His cheekbones protruded. His eye sockets sunk in, and his mouth and teeth seemed to stick out from his face, no longer a part of the inside of his body, but a strange addition to an emaciated face… the tissue and muscle that avoided being metabolized for the ascites and by the cancer… the parts of him that hung on until the very end.
Dr. Pillai said – as macabre as it sounds – that liver failure is a good way to go. Jeff’s death certificate lists as the cause of death “metastatic cholangiocarcinoma.” I asked her, though: what did he die from? She said that, if she had to list it out, she would put sepsis first, and then liver failure. He was definitely in liver failure, she said. And when you die from liver failure, you go into a coma. Oblivion.
Jeff was terrified of suffocating to death. One night, he called all of us to UChicago, to stay with him, because he was afraid that he wouldn’t be able to cough up his phlegm – he lacked the energy and core strength to cough – and that he’d die straining for air. I assured and reassured him that wouldn’t happen. I had the doctors tell him that, too. I thought it was unnecessary of him to think that: it didn’t seem like how he would go.
But I was talking with a friend last night… someone from the cholangio community. As I shared this information, she told me about a dear friend of hers, whose death certificate reads “respiratory distress” as the primary cause of death, followed by “metastatic cholangiocarcinoma.” This young guy – not even 30 years old – died because his lungs filled with fluid, and he suffocated. My heart breaks for him. For his family, who was there and couldn’t save him.
I suppose I should be thankful for how Jeff died. Seems like a strange thing to be thankful for. But I am exceedingly thankful.
Jeff had hepatic encephalopathy, and if you look it up, it completely describes what happened to him. Longer and longer periods of unconsciousness. Eventually, a coma. He had all of the things it lists out: ascites; portal hypertension; esophageal varices; edema; infections; constipation; electrolyte problems. Damn near everything it lists happened to Jeff.
I’m thankful for more than how Jeff died: I’m thankful that it’s over. For him. For us.
It’s so natural for me to talk about death now. The mechanics of it; the faith involved with it; the logistics of it; the insurance of it. All of it. I think it makes others uncomfortable.
One of the harder things about continuing to live is that many people don’t know how to talk to me. My close friends do. There is little explaining there — I have great friends who understand me and love me, and even when our wires cross, we know that the communication comes from love. But people who don’t know me well – as Aunt T pointed out – they’re reacting to the situation instead of reacting to me. It’s through no fault of their own. They simply don’t know me well.
There’s the altered tone of voice and the head cocked to one side. The furrowed brow.
“How are you?”
I thought for a long time about how to respond, and I decided it’s just easier for everyone if I say, “Fine!” The question is genuine. People ask because they care. And ultimately, I am. I am fine. I’m despondent sometimes, but I was given the gift of time… to loosen the vise that threatened to squeeze my heart until it popped. I’d like to think that I aced that test. I dealt with and am dealing with the grief that some people put off, and others are forced to put off. I have looked around at my life and asked what it means. I have consolidated priorities.
There’s the well-intentioned gestures of treating me with kid gloves. I can’t blame people: I’d do the same if I weren’t me.
But the problem is that I am not weak. I am sad. There is a difference.
I’m learning how to live life again, but that doesn’t mean I’m starting over. I’m renovating, and the structure that was there before is still there. Sure… construction is messy, and sometimes inconvenient. But if you’ve ever seen an episode of Fixer-Upper, I think you’ll agree that the final product is worth the questioning and time and inconvenience. I hope my life is like that. I’m trying to make sure it is.
Today in church, they played my favorite song after communion: “Prayer of St. Francis.” I love the entire song, but the chorus and this verse hit me today.
Oh, master grant that I may never seek
So much to be consoled as to console
To be understood as to understand
To be loved as to love with all my soul
Make me a channel of your peace
It isn’t pardoning that we are pardoned
In giving of ourselves that we receive
And in dying that we’re born to eternal life
I was going to be a good Catholic and sit down after communion, but when I was singing, “And in dying that we’re born to eternal life,” I started crying. I couldn’t stop thinking about Jeff.
Because he’s there now.
The guy who sat next to me at that restaurant table 11 years ago; the guy who went to Indy 500 parties; the guy who bought charcoal at Home Depot; the guy who had a tumor grow in his liver without us knowing and who went through hell to stay here with all of us… the shell of him is in the ground, but his soul is somewhere else. Heaven… whatever it is. And I hope that he’s waiting for me, sitting at a table that looks out over the water, with a crayon in hand waiting to write, “Here we are. Together again.”