Writing While Grieving 27: Togetherness

The treatment months

[Previously]

Winter now brings on memories of caregiving. It was two years ago at this time that I was accompanying my wife during her chemotherapy sessions. One of the things you obsess about when a loved one dies of cancer is What could have been done differently? What might have made a difference?

I am unhappy with the care she received from her oncologist. This is based on information I know now that I didn’t know then. When you find yourself in the situation we were in, you are desperate and place your hope in the doctors’ wisdom and experience, but it’s all new, and you don’t know how to manage the onslaught of new and conflicting information.

My wife was suffering from what she thought was a severe case of acid reflux, but then she started to cough, and that persisted enough that she made a doctor appointment. It turns out, she had pneumonia. Her doctor gave her antibiotics and scheduled her for an endoscopy, which revealed that she had a tumor. It’s not the tumor I think about—it’s the pneumonia. Why? Because it kept coming back.

The chronic pneumonia was caused by a fistula in her esophagus that allowed fluid to enter her lungs. I never heard about the fistula until she was hospitalized in April, four months after her diagnosis. Even though the chemo went well at first, and the tumor was shrinking, because of the fistula, things were not going to improve. She didn’t stand a chance. The pneumonia was the telltale sign. The doctors should have known that the pneumonia was a bad sign, especially after it came back. They should have known that this was a hospice situation from the start, and they should have told us that. Instead, my wife endured months of intense suffering. The suffering was unavoidable; however, it didn’t need to go on for so long. So, I’m angry with the oncologist. Still.

I should have known. There was an incident I can’t stop thinking about. My wife was a lovely person who was also a people-pleaser. Her responses to the oncologist’s questions were sometimes too rosy. I sometimes pushed back a bit on what she reported and offered my take. The oncologist said, “I see, you’re a glass-half-empty person.” I didn’t say anything, I was too taken aback, but I was thinking, Half empty? In case you haven’t noticed, this glass is fucking broken.

After she said that, I knew she wasn’t going to listen to me. We were well into this. Could we change doctors now? I felt the disruption would only make a bad thing worse. Just one of a million decisions I second-guess all the time.

I’m angry about those months of suffering. Really angry. But here’s the glass-half-full version of the story. Every time doctors brought up some new procedure that offered more suffering and little hope, she opted in. I was puzzled by this. Her suffering was immense and relentless, and there was no respite. It was hard to watch. I couldn’t understand why she insisted on going on, even though the best-case scenario was always bleak. When a doctor at the hospital said we can do this painful thing, which likely won’t work, otherwise, it’s hospice, she chose the procedure. Our daughter and I were there. Here’s what my wife said to the doctor: “I don’t want to leave them.”

I can’t stop hearing that. My wife was always a couple of steps ahead of me. I liked this. Why? Because it was the cure for my cluelessness, and I was always learning. I get it now. All I was able to see was the horror show that was unfolding rapidly in front of my eyes. She had a different vision. Here’s the best way I can explain it:

On the chemo days, for instance, things were stressful, but there was a certain calm. We would ride in the car and talk about normal things, maybe with music on low. As the infusion was happening, she would read or nap. I would read with one eye on her, in case she needed anything. One day, as she slept, the sun highlighted her lovely face and fell on her silvery curls like in some Renaissance painting. She was ill and much too thin, but I could not take my eyes off her face. I was looking at the most beautiful sight I had ever seen. That image is sharp in my mind as if I am looking at her right now. And here’s what I was thinking, I’m with her. She’s with me. I knew that soon, I would never be with her again, but I was with her at that moment.

There is nothing memorable about the drive home except that we were together. I don’t know what we talked about. It doesn’t matter. We were together. She hadn’t left us yet. This is what she taught me. She would endure anything. I would, too.