“When pale January lay, In its cradle, day by day, Dead or living, hard to say;” Alfred Austin
January, 2017. I began the year with exhaustion and foreboding. The whole family was undone by Trump’s election which felt more like a Twilight Zone episode than real life. Our son had accepted a two year postdoc in Guam on the other side of the world. Our daughter was juggling her family, her job and her rage about the election. She was heading off to the women’s march in Washington D.C. the day after the inauguration. I was feeling out of gas and so much older. My knees were killing me. But mostly, I was frantic with worry about Michael. His appetite was disappearing. He wasn’t drinking enough liquid. I made him get a blood test which came back normal except for his kidney function. I tried to keep from nagging him but I coulo stop myself. He wasn’t making sense to me. He exercised, wearing himself out and wouldn’t replenish himself. I brought out the Boost or Ensure which he detested, but he drank only enough of it to shut me up. He was looking thin and old. He hadn’t had any treatment in over a year. I was riven with anxiety. I’d been opposed to this conservative medical approach for a year but couldn’t move the oncologist to restart the targeted therapy Keytruda, which had effectively banished Michael’s enormous cancer load in 2015. I was driving myself crazy, wondering if his thyroid was out of control or if his cancer was returning. I felt isolated, lonely and afraid.
Our bird biologist kid had been at a conference in New Orleans and was coming back into Chicago on January 8th. We decided to make a weekend of it before picking him up at the airport. Friends we hadn’t seen in a long time were having somewhat of a family reunion which would include watching the great rock film “The Last Waltz” on Saturday night. We planned on going to our favorite Greek restaurant in the city on Friday, staying at a downtown hotel and then taking in a museum on Saturday before joining our friends. When we got to the restaurant, I was excited about eating my favorite dishes, but Michael said he wasn’t hungry and couldn’t find a thing that looked appetizing on the menu. How impossibly bewildering. He always loved this place. I was frustrated, bewildered and guilty as I sat, trying to enjoy my meal, while he pushed gyros around on his plate. We headed to our hotel and I could tell that Michael was sorry that he was agitating me. We settled into our room and re-established our better selves. We made love that night and fell asleep quickly. When I woke in the morning, Michael was still out cold. I waited while time ticked by. After 13 hours, I finally woke him. My nerves were jangling but we pushed on into what remained of the day.
We headed off to the Field Museum which was his favorite and wandered around for a few hours. He ate a small lunch and I tried clamping my mouth shut about food. Eventually we moved on to our friends’ home, to watch the movie and socialize with all the people who hadn’t seen us much during these cancer years. As the evening went on, Michael was virtually silent. There was a big spread of Middle Eastern food but he didn’t touch it. When I ask him why he wasn’t eating, he said he didn’t like that kind of stuff. Again, I was mystified. My oldest friend came up to me and worriedly asked why he wasn’t eating. Eventually he picked at some fruit. I moved grimly forward, while my insides quaked with anxiety. The next day, we met some of my family members for brunch. Michael ordered a child’s plate which so unnerved me that I could barely focus on conversation. We left everyone early with nowhere to go. The weather was freezing cold. Our kid’s plane wasn’t due to arrive for hours. I suggested that we go driving through the neighborhood where he grew up to see if he’d perk up a bit. That worked for a short time. We wound up at a bookstore where he found a table and laid his head down. We were barely speaking. Then suddenly, he popped up and said he was going to nap in the car. I sat, stunned, having no idea what was happening. Was this a reckoning for him after all the years of stress? Or was it his cancer? I joined him in the car and eventually we left for the airport. My mind was whirling frantically but there was nothing I could do right now, in this moment.
We collected our son and decided to go to Michael’s favorite hamburger joint before going home. He consumed part of a burger and looked like he might pass out at the table. Our son was exhausted from his trip. Despite the late hour and my not-terrific night vision, I took the keys for the couple of hour drive back home. Michael was agitated about my potentially looking at my cell phone while driving but I shoved it in my pocket. We silently drove. The guys slept. As the miles passed, I was thinking Michael needed to be scanned immediately and was to figure out how to get those tests pushed up. When we arrived at home, the first thing Michael asked was where I’ve put my phone and if I’d looked at it on the way home. I pulled it from my pocket and he was instantly irrationally enraged. Always a hothead, this explosion came out of nowhere and we wound up furious at each other, spending that night apart. We never did that. I was crushed. My journal quote from that evening, “If I could, I’d get in my car, drive away and never come back.”
Within a few days, life felt utterly changed. Michael had for the most part, disappeared. Mostly he slept. He’d go out for short periods of exercise and come back exhausted. I thought he’s starving and dehydrated. He was mostly silent or monosyllabic. He stopped doing most of his projects. His short term memory was terrible. I was trying to understand him. I was thinking brain tumor or Merkel cell all through his digestive tract. His affect was totally flat and he was irritated by my constant prodding. In our forty five years together, we pulled closer together when problems arose. But not now. He’d lost a lot of weight. He had more blood tests which showed nothing. We met with our radiation oncologist – he diagnosed cachexia, a starving issue that happens with cancer patients in treatment. He prescribed appetite stimulants and anti-depressants. By the time we got home, I knew that diagnosis is wrong. Michael wasn’t in treatment. I called our medical oncologist who ordered a battery of blood tests basically every hormone in the body. She’d also ordered a scan in a few days.
Meanwhile, I’m keeping track of the peculiar things Michael’s been saying and doing. I asked him to go to the movies with me – he said nothing looked interesting. I went alone and when I returned he said he didn’t know where I’d gone. He’d been forgetting to take his vitamins and other supplements in recent days. He argued with me about whether he’d had his Boost, even if it had been a day since his last one. He accused me of buying an incorrect dosage of Vitamin D and said the new amount might be poisoning him. In the evenings he’d pop up from his seat and would start preparing to go out. When I asked where he was going, he’d say it was time for his walk. This happened at all hours of the day. His sense of time had completely vanished. We went as a family to the Women’s March with our son-in-law and grandchildren, bringing a chair for me to accommodate my bad knees. He wound up using it. On the way home, he was driving. We’d promised our grandsons Dairy Queen as a treat but Michael drove right past it. When I reminded him, he said he thought we’d meant a different ice cream place. Later that evening I was making mashed potatoes. He suggested I go out to the garden to get fresh chives. In the dead of winter? I was beyond terrified. I was also numb, angry, and short-tempered. Without our usual connection, I felt unmoored, like he was already gone. But from what? I couldn’t wait for the scan although I was petrified. One day, out of the blue, he told me he was going into school to teach his Holocaust unit for a full day in a colleague’s classroom. I couldn’t imagine him having the energy to get through it but I slept in another room to make sure he got a full night’s sleep before doing this herculean thing he’d set before himself. At the end of the day, he dragged himself home and collapsed. I sat wondering if he was able to be coherent, if he made any sense for all those hours.
January 24th, 2017
“What am I living? How did this darkness descend so quickly? Michael is like a zombie. He barely eats or drinks. He showers and looks his computer, but nothing else. Today I coaxed him into going to the grocery store with me, hoping he’d find something tempting to eat. He was slow and confused and couldn’t seem to remember what he was doing.”
January 25th, 2017
“I just looked at Michael’s hormonal blood work. Except for slightly lower testosterone, there’s nothing abnormal. I’n resigning myself to cancer. Today was his scan. He said that waiting for the dye to move through his body was uncomfortable and that he laid on the floor in the prep room. I try imagining what the nurses were thinking as he lay there. He came home looking drained and passed out immediately. His last comment to me was that he wondered if he would ever have another day when he felt good. All he’d ingested today is one Boost – 360 calories. I feel so alone. He’s not gone yet but the past few weeks have felt so dreadful I wonder if I’m in a place from which I can never return.”
On January 27th, Michael started taking an anti-depressant which acts as an appetite stimulant in older people. We headed to the doctor’s office for scan results. They are NED, negative for disease. I was beside myself. The man I’m living with is not my life partner. The doctor decided to order an endoscopy. Michael was angry with me because he thinks I’m being negative and unnecessarily aggressive. He thinks he’s fine. I was angry too. His passivity versus my aggressiveness was an old story. He was slow while I was fast. When the issues were small that had not been a terrible thing. But now it’s a disaster which was creating distance between us when we most needed each other. I didn’t care what the scans said. Something was terribly wrong and the doctors were missing it. He was tired of my nagging. I was tired of doing it. But he’d lost 14 pounds in six weeks. He goes away from me to sleep for hours. My energy was almost non-existent. Trying to drag him out of his silent rabbit hole felt too big for me. I felt like I was already in mourning.
On January 30th, we were having another day of friction. I’d been researching and was positive there was something wrong with Michael’s brain. I wavered between frustration, anger and guilt. I didn’t want to frighten or upset him because he’d lost all perspective. He wanted me to be quiet. By evening, we were sitting in total silence. He departed for our bedroom while I stayed downstairs. Thinking. I felt terrible. I believed he was sick, regardless of what he thought, and I wanted to be kind and loving, not angry. So I went upstairs to find him sitting on the edge of the bed. I put my arms around him and apologized for my behavior, stating that I was only trying to take care of him. I kissed him, told him I loved him and suggested that he go to sleep. Then I went back downstairs to watch the Rachel Maddow show, to catch up on the outrageous news about Trump’s Muslim ban which was being protested at airports all over the country. Suddenly, Michael was standing in the doorway of the living room. He looked at me and told me he was feeling confused. He asked, “did you just tell me you’re leaving me?” I replied, “of course not,” whereupon he burst into tears. I pulled him toward me to comfort him and said he should drink an Ensure because he’s eaten so little, and that we should watch the news together which is what we’ve always done. I got the drink, we snuggled together on the couch, and I resumed the paused program. After a few sips, he looked at the screen and said, “what’s going on there?” I told him these were protests against the Muslim ban. He said wonderingly, “what’s a Muslim ban?” I explained while having an internal meltdown. My history-teaching husband whose awareness of current events is as natural as breathing doesn’t remember this big story ? I didn’t react but this shoved me over the edge. That night when we went to sleep, I was resolved that I was getting Michael into the emergency room the next day to get a brain MRI. I was done with whatever this process was that was producing no results that made any sense to me. The next morning, I called our oncologist and spoke to her nurse, telling her that Michael was disappearing and that I was taking him to the ER for testing. She agreed, but I remember her saying that we’d never get a brain MRI there. I replied, “watch me.”
TO BE CONTINUED…