What happened to Michelle? (#1434)

Topics/tags: Michelle

Michelle passed away twenty-three months ago today. Rather than marking the anniversary as I often do, by describing my current state of mind and sharing some memories, I thought I’d share a different kind of story, a tale of the health issues that led to her passing. In part, I’m sharing because I want to remember, and I’ve already started to forget details, both minor and major. In part, I’m sharing because some people want to know [1]. In part, I’m sharing because my muse insists that I share.

Let’s see …. Back around 2021, Michelle took a job as Chief Medical Officer in Audubon, a small town about two hours west of Grinnell. I stayed in Grinnell. I’m not sure that’s directly relevant, but it will likely play a part in the story. On her first day or so of work, I had a heart attack. If I recall correctly, I called her and described my symptoms before heading to the hospital. I am not the world’s most supportive husband.

In 2022, Michelle started to feel bone pain regularly. I encouraged her to see her physician and talk about it. However, the pain usually went away within a week. In addition, it was always in a different spot, and she assumed it was just part of getting old. Finally, when she and the kids were home for the Thanksgiving holiday, she agreed to meet with her physician. They chatted, agreed that it was probably nothing, but decided that she should see an orthopod. They also said, The orthopod is going to order X-rays, so let’s get them done.

On Thanksgiving Eve, she got a notification on her phone that the X-rays had been read. As is too often the case these days, she got to read the results before her physician did [2]. What did they say? Innumerable lesions. Or perhaps, Uncountably many lesions. Not a good thing to read. Michelle said, Multiple myeloma or some kind of stage-four cancer.

I can’t completely recall what happened next. I think we quickly met with the Oncologist who regularly visited Grinnell [3]. Michelle worked with him regularly and respected him highly. At least as I recall, he agreed with her assessment and sent her on to UIowa. Or perhaps we didn’t meet with him, and she just decided to get treatment there; my memory fails me. But I’m pretty sure we met with him.

We got an appointment at the University of Iowa Oncology department soon thereafter. I can’t remember the details. But they decided it was multiple myeloma. And treatment started. She had a great physician and an even better support nurse. She was offered the opportunity to participate in a drug trial (or perhaps just a new approach). She accepted. Unfortunately, she ended up in the control group [4].

So we did the normal things. We had them harvest cells from her bone marrow so that they could restore them after more extreme treatments. She started twice-weekly chemo appointments. We spent a lot of time driving back and forth to Iowa City. We had a few overnight visits to handle some more extreme things, such as the harvest. I was fortunate to be able to accompany her on most visits and care for her. We were also fortunate that she had an understanding boss in Audubon who encouraged her to take short-term leave. We didn’t realize it would be permanent.

I can retrace the steps of a typical visit, first to check in at the entrance, then downstairs to get labs drawn, then back upstairs to wait for the chemo. Once in a while, we’d see people we knew from Grinnell—a colleague who’d been living with multiple myeloma for about a decade, a townsperson whose cancer was worse than Michelle’s.

Finally, May 2023 rolled around. Or perhaps June. In any case, we reached a point in which the multiple myeloma seemed to be in remission. Oh, how we celebrated. Then came the one-month checkup. She seemed to be doing well. On the way home, her physician called, just as we reached Grinnell. X-rays show a large mass at the tip of your pancreas. Unfortunately, that normally means only one thing: pancreatic cancer. Damn! Why hadn’t they seen it sooner?

A few days later, we returned to UIowa for a biopsy. Yes, it was pancreatic cancer. And it did not look good. The mass was large. There were potential metastases in her liver (I think) and elsewhere. We waited for a follow-up call. And waited. Eventually, she called the Mayo Clinic and got an appointment.

Did we go up there a week after the biopsy? Two weeks? I’m not sure. It was soon, but not soon enough. Time for an MRI. The mass seemed to have grown in the short time. Another appointment for a liver biopsy, perhaps an excision. Another trip up to Minnesota. Yes, it had metastasized. Stage four.

Regularly traveling to Minnesota for cancer treatment didn’t seem feasible. So we returned to her colleague for the treatment. Our first meeting was at his office in Des Moines. I still recall asking him whether we could hope for two or three years. His eyes said it all: Oh, you poor, optimistic fool. But yes, he was willing to supervise chemo in Grinnell and to coordinate with Mayo.

She got chemo treatment a few days each week in Grinnell. We visited Mayo every month or two. I recall one visit, in particular, where they wanted her genetic tree. They were stunned at how precise a tree she made. Is it surprising that my wife, who worked in a genetics lab and was a thoughtful physician, knew what to do?

A few months of the first set of drugs. Things seemed promising. She had energy. She felt good. Progress looked good after the first monthly visit. Maybe even the second. But the third? Nope, it’s not working. So we switched to another drug. I think that was November. Perhaps October. Perhaps December. That one hit her harder. She lost energy. She lost her hair. But she kept trying. We kept visiting the oncology center at GRMC for treatment. We saw more people we knew.

Then came May. When she stopped in for her pre-treatment check-in, she was running a temperature. She was running enough of a temperature that they weren’t comfortable giving her the chemo. And she wasn’t feeling well.

She rested the next few days. And the fever continued. I recall hugging her tightly as she shivered in bed. Eventually, we decided to bring her back to the ER to check on things. Not only was her temperature high, but her O2 saturation was something like 50%. Not good! They admitted her to the ICU. One of her trusted colleagues was set to take care of her.

I got a call in the middle of the night. She’s not doing well. We’re shipping her to Des Moines. Damn! I called the kids, and they made plans to come. I called her brother. I called one of her best friends. She spent the next few days in the ICU, intubated. It looked like pneumonia. They gave her appropriate antibiotics.

Communication was hard. Fortunately, she knew American Sign Language, and Youngest quickly learned enough to understand what she wanted. And she wanted to be extubated. She got her wish after about three days and moved up to the recovery floor. Things looked good.

Then, another phone call. She’d taken a turn for the worse and was back in the ICU, intubated and sedated. More difficulty communicating. Not much progress. Loads of tests. If you’ve had a family member go through something similar, you know what it’s like. The kids and I rotated between her room and the waiting room. I graded a lot of exams [5]. Eventually they decided that the infection was fungal rather than bacterial. New drugs. These worked. Slowly. I tracked her progress from intubated to on a fancy breathing machine with 100% oxygen to less oxygen to a less intrusive mask. Was it two weeks? It seems like it.

Somewhere in that time period, we encountered a horrible thunderstorm that broke the car’s windshield while it sat in the parking lot. I also skipped graduation for the first time in my career [6].

In any case, she was better, aware and able to communicate, and seemingly recovered from the pneumonia. Unfortunately, she hadn’t really moved for three weeks, and her body had already been weak from the chemo. So up to the oncology ward for more treatment. At least it had a nice view! The first few days in oncology, they mostly worked on her breathing and on helping her stay awake. Perhaps I was optimistic in recalling that she was communicating well when she left the ICU.

Then they added basic physical therapy. She had little energy and her muscles did not work well. She could not push herself up in bed. But they worked on it. She got rides in various devices. She built energy.

Her goal had been to get out by June 18 or so to attend Youngest’s graduation. When we told the social worker that, she thought the goal was simply to survive until June 18. Michelle was furious that the social worker would imply that she wouldn’t live that long. Although she was weak, her brain and personality were perfectly functional. I recall Eldest saying, I’m going to run to the bathroom. Michelle called him over. Walk, don’t run, she told him [7]. The kids and I sometimes continue that joke, which makes us both laugh and cry.

A few weeks passed. Her energy returned. Her muscles built up. But she wasn’t ready to come home. There were many discussions about what to do next. Fortunately, they deemed her ready for fairly intensive physical therapy and sent her to the PT ward in the same hospital. She approached recovery with ferocious intensity. And she got better. She regained the ability to walk, to climb stairs, to wash herself. She needed some help, but she quickly moved in the right direction. Along the way, Eldest and I spent a lot of time with her, walking her to the in-hospital park and more.

We also got the house ready. With the help of a friend, we removed everything from my downstairs office. Another friend sold us a bed with electric controls. And so my office became our new bedroom. We put a temporary ramp outside. We put a staircase chair inside. We had rails put up in the downstairs bathroom and shower.

And she came home! I think it was early or mid-July. She couldn’t walk far. She sometimes couldn’t walk at all. She needed a wheelchair much of the time. But she was home! She worked on more PT, first at home and then at local care providers. She got assessed for restarting chemo and was approved. Things looked great. And she kept improving. She needed the wheelchair to get to chemo (and, more importantly, to get home), but she was strong enough for it.

In mid-August, progress stopped. She started to go backwards. She needed more help: getting dressed, getting out of bed. Classes were starting, so we hired someone to take care of her while Eldest and I were teaching. On August 28, we went to the all-campus picnic together. She was so happy to see people, and they were so happy to see her. Some had visited her in PT. Things seemed great.

The 29th was our anniversary. We planned dinner together. I taught my first day of classes [8]. I got home. Her caregiver said, She seems weak and is having trouble breathing. You should take her to the ER. We did. They admitted her to the ICU for observation. Our last anniversary dinner ended up being McDonald’s, which is what she wanted that night. I’m not sure I had anything.

She seemed weak, but okay, so they moved her to the regular patient floor. I don’t recall much about being on that floor, except that they thought she might need to stay for a bit and moved her to the long-term-care floor. It was there that we got the devastating news: The chemo had failed. Her cancer was everywhere. The end was near.

I recall her saying something like, I thought I prepared, but I’m not ready. Maybe she just said, I’m not ready; the first part was implied. After all, we’d spent much of the last year and a half talking about the eventual end. Like her, I’d thought things were moving in the right direction, and we’d have more time together. We even had a visit to Mayo scheduled for the next week.

We had the difficult conversations about hospice, about appropriate treatment (or lack thereof). She’d never wanted to stay in the hospital, unconscious, with little hope of recovery. So the no extreme measures part was easy. Choosing hospice at home or in the hospital was harder. Her comment was, As long as I can sleep next to Sam, it’s fine with me. We decided to keep her in the hospital. I think it was the right decision. Why? The kids got a break from the sadness. And she’d worked in that hospital for more than twenty years; so many people there loved her (she loved them, too) and visited regularly.

I sat in the recliner next to her bed and slept with her for the rest of her life. For a few weeks, we talked regularly, listened to music, held each other’s hands, and more. I helped where I could, such as calling nurses when needed or grabbing food when I was hungry. One of my biggest contributions was planning a jail break. As she said, When I came in on our anniversary, I didn’t think I’d never get to leave. So I worked with the nursing staff to find a way for her to leave. The Mayflower provided an accessible van and driver. She had enough energy to be pushed in a wheelchair. And we took a trip together. She visited our house. We had a meal together at Frontier. The kids took her to see her gravesite [9]. Most importantly, she got to leave!

The time in the hospital is a blur. I taught on some days; friends often came to sit with her while I was gone. Colleagues taught for me on other days; I’m eternally grateful. People brought the kids food. Her brother and sister-in-law came to visit for a few weeks. Cousins flew out from California and drove in from Chicago. Other friends came, too.

And she gradually declined. After a few weeks, she could no longer get out of bed to sit in the chair. She hated that. She had more trouble communicating. She hated that, too. The kids and I broke her out one more time, taking her hospital bed out to the courtyard so she could see the sun. By that time, she couldn’t even push herself up in bed.

Then she stopped waking up. That was so hard! As I said, she didn’t want to be stuck in the hospital, unconscious. And she couldn’t say when she was in pain. I could often figure it out, and the nurses were good at giving her medicine when she needed it. The mass in her belly grew and grew.

Eventually, we reached the end. I was still sleeping by her side. I woke up every hour or so. On the 24th of October, I woke up at 1 am, and she was okay, or as okay. At 2 am, she was, too. At 3 am or 4 am, she was no longer breathing. I recall stumbling down the hall to the nurses’ station to ask them to check. We called the boys to say goodbye.

She made it nearly two years from the initial X-rays until the end. She made it more than a year after the diagnosis of Stage IV Pancreatic Cancer. She made it nearly two months in the hospital. I’m so thankful for how hard she tried. I hope I helped; I think I did. I wish I’d done more.

Now she’s gone. It’s been almost two years. She’s never coming back, except in our memories and dreams. I miss her so much.

At least we had 37 years of marriage together and were able to spend enormous amounts of time together during her last two years. We were lucky to have so much time!

Postscript: I worried about writing this musing. I found myself much less sad than expected when writing the first half. But once I reached the last few months, starting in May or so, I just bawled the whole time. I considered putting it aside, but decided that I’d be better off pushing on.

Postscript: A month from today will be two years. I have no idea what I’ll do. I have no idea how I’ll get through the day. At least it’s not a teachng day.

[1] I recall one person asking, What happened? on her funeral memories page. That’s a strange place to ask.

[2] Is anyone else bothered by this design? While I like seeing my test results, I’d rather hear from my physician about them, rather than left to interpret them myself. When Michelle was still here, she’d tell me what they meant. Now? I’m left to guess.

[3] Grinnell has a lot of visiting specialists who normally come from Des Moines.

[4] This paragraph represents multiple visits.

[5] Yes, that’s right; it was finals week.

[6] It’s all about me.

[7] No, she wasn’t quoting the Ventures.

[8] In a fit of miscommunication, both Eldest and I planned to teach on Tuesday and Thursday.

[9] I didn’t know that she’d asked for that, so I waited for them in the hospital.

Version 1.0 of 2026-09-08.