Grief

Thumbs Up

Jeff’s name still tops the list of my phone favorites. His is one of the very few contacts that also has a picture assigned to it.

The picture is from years ago: before we had kids. Jeff and I had been digging around in childhood mementos, and we came across his State Championship soccer medal.

I vaguely remember finding the medal on a Saturday morning. A Saturday morning before kids meant leisurely waking up after 7 am; drinking hot coffee out of a mug before it got cold; and moseying around the house, deciding what to do for the day. Jeff still had bedhead, and his black Under Armour sweatshirt covered up his red Jefferson Patriots shirt (his favorite bedtime shirt) that he had worn since 8th grade.

“Put it on!” I goaded him, half making fun of him, half completely impressed that he had the medal at all.

Jeff played along, putting the medal on over his Under Armour sweatshirt. He gave me two thumbs up. I snapped a picture.

That pose – the two thumbs up – played out over and over again throughout our marriage. It showed up every time Jeff called me. And it showed up, over and over again, while Jeff was sick.

Wanting to include the soccer medal picture here, I went on a hunt for the original. I ended up having to settle for a screen shot… but the hunt took me to Jeff’s iCloud, where I took a deep dive into his Notes.

I expected to see things from work: notes with names of subcontractors; punch list items; and random phone numbers. Instead, all of his Notes were a reverse chronology of his treatment. This was a Note dated November 27, four days after having an ascites drain placed.

ASCITES
11/27/18
-1215 am-475 ML
-230 A.M.-600+ ML
-3 A.M. – 275 ML
-4 A.M. – 575
-445 A.M. – 150
-6 A.M. – 600
-715 A.M. – 575
-150 pm – 500
-330 pm – 250
-530 pm – 300
TOTAL – 4300 mL

This told me a few things. First, Jeff wasn’t sleeping. I knew that already, but this just painted the picture of what it must have been like for him. At this point, I think Barb was staying at our house full time. Second, holy goodnight: that is a lot of ascites. Jeff was clearly going downhill. And fast.

I also found a Note from November 21. Jeff was discharged from the hospital that day, and a palliative care nurse had arranged for a child life specialist to speak with him. Jeff didn’t want to talk about it with me. But here were his notes:

Memory box – pictures, shirts, objects, toys
Quilt
Decorating hearts with strings (invisible string book)
Validate their emotions, talk through how he feels and how I feel and that it’s okay to feel that way
Talk with counselor ahead of death so they’re familiar with him

I wonder what Jeff thought as he typed “ahead of death.” Did that dislodge something in his heart or brain that hadn’t yet given way?

I can tell you that I think it might have. The next day – the day after Jeff used his thumbs to type “ahead of death” – was Thanksgiving. That night, after my family trickled out to rest up for Black Friday shopping, Jeff sat on the edge of our bed. That’s when he told me that he thought it might be his last Thanksgiving. And a small part of me was so relieved that he knew that. At that point, I needed Jeff to catch up to where I was: to admit he was dying; to admit there was little hope for a physical turn-around; and to acknowledge that we still had so much we could do to prepare our children.

The expectation to accept his own death – I now realize – was arguably the biggest and hardest thing I ever asked of Jeff. Maybe even unfair and self-serving.

Earlier in the month, one of his Notes from November 8 read:

730 pm – 99.5
900 pm – 100.5
930 pm – 100.4
1005 pm – 100.5
1045 Pm – 99.8
1120 pm – 100.3
330 am – 99.9
445 am – 99.9
700 am – 99.3

Which correlates exactly with what I wrote on Caring Bridge:

Last night was rough. Jeff had a paracentesis yesterday (they removed 8 liters of fluid from his abdomen), and that always causes infection. Knowing that, we asked Barb to spend the night in case an ED visit happened. Jeff slept in the big chair downstairs; Barb on the couch; me in the bed, since both of our kids are sick and need nebulizer treatments sporadically throughout the night. (They are on the mend now, so it’s not as bad as it was.)

Jeff’s temperature fluctuated between 99.5-100.5 throughout the night. I heard the beeping of his thermometer because I slept with the door open, and I can always tell if it’s a ‘good’ beep or a ‘bad’ beep. 

This is when it got hard. Last year, at this time. This is when time compressed us all like a vise.

Since Thanksgiving, the days have felt as intense as the last .1 of a half marathon: every breath is calculated and controlled; peripheral vision is gone, and only laser focus is left; and undoubtedly, anything other than the next step seems insurmountable. The finish line is in sight, and I’m hurtling toward it. But that’s where the analogy stops. Because when I’m running a half marathon, the ending is a reward. Jeff’s death was not a reward.

I anticipate December to be this way. My excitement for the holidays is a weird mix with intense grief. On Thanksgiving – a restorative day with my family – I excused myself and cried upstairs. I couldn’t tell you exactly why. I felt such love and such grief at the same time, and it was confusing. My thoughts went to last year, and that created a mental movie of moments from 2018.

At this point last year, we had been through numerous thumbs up pictures. There was the one when Jeff was hospitalized for his first infection in June. Most of us were shocked when Jeff thought it would be funny to take this picture and post it to Caring Bridge. You might even notice his distended stomach — that was the first time we saw the effects of the portal vein thrombosis. A few weeks later, Jeff would also have esophageal varices, another complication.

There was his birthday on July 16: when Jeff and I spent the day at UChicago, Jeff getting a chemo infusion and meeting with doctors about his swollen ankles and legs. He wore suspenders that day – newly purchased – because none of his pants fit: his belly was so distended from ascites, but the rest of him was gaunt.

Here’s what I wrote that day, as Jeff was having his blood drawn before chemo:

Being a caregiver is hard. Hard. But I got up and took a shower this morning. I went water skiing at Lake Geneva, and I had a Miller Lite last night. I can button my pants, hug my kids, get comfortable in bed, and recognize myself in the mirror. My heart is heavy for my husband. He’s handling it well, but he can’t do any of that. 

I’d say that this isn’t what I signed up for, but it is. I had a good sense of what marriage was. I knew I wanted to be married, and I knew I wanted to be married to Jeff. But damn if this didn’t happen about 35 years before I thought it would. 

It’s Jeff’s birthday today. He’s 36.

We’re at UChicago for a follow-up with his doctor. I think we’re also meeting Jeff’s new oncologist. Jeff was supposed to have follow-up tests and imaging today, but he doesn’t need to, due to the recent hospital visits. They have the imaging that makes sense at this point.

Instead, today Jeff will be seeking some serious relief from all of his fluid retention, and of course, seeking the cause of it all. His ankles are more swollen than mine ever were during pregnancy. He gets some relief at night. We use the kids’ foam wedge for Jeff to elevate his feet above his head… but then all the fluid just pools in his thighs. And by 8am, it’s back to his ankles.

Then, only a few months later, there was this thumbs up on November 3. Jeff – with his stolen Halloween candy from Jake and a walker nearby – had a good attitude despite having declined rapidly. He had a hard time walking, and was confined to this chair. He made a huge effort to go wherever the kids were, and if that was in the basement, then he summoned the energy to get there.

And then things got more and more real. This ambulance picture is from November 19, one of the days that Jeff was in severe and debilitating pain. It was the day I realized that we were not just seeing him die: we were also listening to it. He was transferred to UChicago later in the evening, and Barb followed the ambulance downtown. Here’s what I wrote last year:

I went down [to UChicago] the next morning. UChicago never really did figure out what was wrong. The CT scans confirmed that Folfox is not working, and there is slight disease progression. Palliative care discussed a different management plan, which involves more Fentanyl and a different strategy of taking Dilaudid and Oxycodone. Also during that stay, Jeff and his doctor agreed that he could try Folfiri, which was previously discouraged because Jeff’s bilirubin was too high, which increases the risk of liver toxicity and liver failure. 

And then, at this point last year, the gurney picture hadn’t been taken yet: the one of Jeff leaving UChicago for the last time, to come home and die. I have no idea what prompted me to take this picture: taking it then, and including it here, seems wrong and like a betrayal of the dying process. It feels irreverent to have a picture like this, days before someone is going to die. But part of me also feels like it’s a poetic ending.

Jeff had come a long way since that morning in our kitchen. He had become a father; he had become a triathlete; he had traveled across oceans and on highways. He had laughed with family, read books, and become an uncle. He had been tailgating, snowboarding, swimming, and skiing. He had seen musicals; talked about football; and changed poopy diapers. His life was full.

I’m not sure any ending seems appropriate and fit for a 36-year-old man with cancer. And I’m not sure any ending seems fit for Jeff Thomas. But this is the one he got, and although he couldn’t control the plot, Jeff certainly chose the tone. Last year sucked. But man, Jeff still laughed. And, through tears, the rest of us did too.

1 comment on “Thumbs Up

  1. Pamela Leconte

    So bittersweet. Stay in the light. Love, Pam

    Like

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