“When pale January lay, In its cradle, day by day, Dead or living, hard to say;” Alfred Austin
January, 2017. I begin the year with exhaustion and foreboding. The whole family is undone by Trump’s election which feels more like a Twilight Zone episode than real life. Our son has accepted a two year postdoc in Guam on the other side of the world. Our daughter is juggling her family, her job and her rage about the election. She is heading off to the women’s march the day after the inauguration. I am feeling out of gas and so much older. My knees are killing me. But mostly, I’m frantic with worry about Michael. His appetite is disappearing. He’s not drinking enough. I make him get a blood test which comes back normal except for his kidney function. I try to keep from nagging him but I can’t stop myself. He isn’t making sense to me. He exercises, wears himself out and doesn’t replenish himself. I bring out the Boost or Ensure which he detests, but he drinks enough of it to shut me up. He’s looking thin and old. He hasn’t had any treatment in over a year. I drive myself crazy wondering if his thyroid is out of control or if his cancer is returning. I feel isolated, lonely and afraid.
Our bird guy has been at a conference in New Orleans and is coming into Chicago on January 8th. We decide to make a weekend of it before picking him up at the airport. Friends are having somewhat of a reunion which will include watching the great rock film “The Last Waltz” on Saturday night. We plan on going to our favorite Greek restaurant in the city on Friday, stay at a downtown hotel and take in a museum on Saturday before joining our friends. When we get to the restaurant, I’m excited about eating my favorite dishes but Michael says he’s not hungry and can’t find a thing that looks appetizing on the menu. I am frustrated, bewildered and guilty as I’m enjoying my meal while he pushes gyros around on his plate. We head to our hotel and I can tell Michael is sorry that he’s agitating me. We settle into our room and re-establish our better selves. We make love that night and fall asleep quickly. When I wake in the morning, Michael is still out cold. I wait while time ticks by and after 13 hours, I finally wake him. My nerves are jangling but we push on.
We head off to the Field Museum which is his favorite and wander around for a few hours. He eats a small lunch and I try clamping my mouth shut about food. Eventually we move on to our friends’ home to watch the movie and socialize with people who haven’t seen us in awhile. As the evening goes on, Michael is virtually silent. There’s a big spread of Middle Eastern food but he doesn’t touch it. When I ask him why he isn’t eating, he says he doesn’t like that kind of stuff. My oldest friend comes up to me and worriedly asks why he isn’t eating. Eventually he picks at some fruit. I move grimly forward, while my insides quake with anxiety. The next day, we meet some of my family members for brunch. Michael orders a child’s plate which so unnerves me that I can barely focus on conversation. We leave early with nowhere to go. The weather is freezing cold. Our kid’s plane isn’t due for hours. I suggest we go driving through the neighborhood where he grew up to see if he perks up a bit. That works for a short time. We wind up at a bookstore where he finds a table and lays his head down. Then suddenly he pops up and says he’s going to nap in the car. I sit, stunned, having no idea what’s happening. Is this a reckoning for him after all the years of stress? Or is it cancer? I join him in the car and we go to the airport. My mind is whirling frantically but there’s nothing I can do right now.
We collect our son and decide to go to Michael’s favorite hamburger joint before going home. He consumes part of a burger and looks like he might pass out at the table. Despite the late hour and my not terrific night vision, I take the keys for the couple of hour drive back home. Michael is agitated about my potentially looking at my cell phone while driving but I shove it in my pocket and we silently drive silently. As the miles pass, I’m thinking he needs to be scanned immediately and figuring out how to push those tests up. When we arrive at home, the first thing Michael asks is where I’ve put my phone. I pull it from my pocket and he is instantly enraged. Always a hothead, this explosion is out of nowhere and we wind up putting distance between that night. My journal quote, “If I could, I’d get in my car, drive away and never come back.”
By mid-month, life feels utterly changed. Michael has for the most part, disappeared. He mostly sleeps. He goes out for short periods of exercise and comes back exhausted. I think he’s starving and dehydrated. He’s mostly silent or monosyllabic. He’s stopped doing most of his projects. His short term memory is terrible. I’m trying to understand him. I’m thinking brain tumor or Merkel cell all through his digestive tract. His affect is totally flat and he’s irritated by my prodding. In our forty five years together, we pull closer when problems arise. But not now. He’s lost a lot of weight. He had more blood tests which show nothing. We met with our radiation oncologist, he diagnosed cachexia, a starving issue that happens with cancer patients in treatment. He prescribes appetite stimulants and anti-depressants. By the time we get home, I know that diagnosis is wrong. Michael isn’t in treatment. I call our oncologist who orders a battery of basically every hormone in the body. She’s also ordered a scan in a few days.
Meanwhile, I’m keeping track of the peculiar things Michael’s been saying or 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’s been forgetting to take his vitamins and other supplements. He argues with me about whether he’s had his Boost. He accused me of buying an incorrect dosage of Vitamin D and said they might be poisoning him. In the evenings he pops out of his seat and starts preparing to go out. When I ask where he’s going, he says it’s time for his walk. His sense of time has vanished. We went as a family to the Women’s March, 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 he drove right by it. When I reminded him, he said he thought we’d meant a different ice cream place. Later I was making mashed potatoes. He suggested I go out to the garden to get fresh chives. In the dead of winter? I am beyond terrified. I’m also numb, angry, short-tempered. Without our usual connection, I feel unmoored, like he’s already gone. But from what? I can’t wait for the scan although I’m petrified. Out of the blue, he tells me he’s going into school to teach a full day in a colleague’s classroom, his holocaust unit. I can’t imagine him having the energy to get through it but I sleep in another room to make sure he gets a full night’s sleep before doing this herculean thing. At the end of the day, he drags himself home and collapses. I’m wondering if he was able to be coherent.
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. 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’s 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 starts taking an anti-depressant which acts as an appetite stimulant in older people. We head to the doctor’s office for scan results. They are NED, negative for disease. I am beside myself. The man I’m living with is not my life partner. The doctor orders an endoscopy. Michael is angry with me because I’m being negative and aggressive. I’m angry too. His passivity versus my aggressiveness is an old story. He is slow while I’m fast. When the issues are small that’s not been a terrible thing. But now it’s a disaster which is creating distance between us. I don’t care what the scans say. Something is terribly wrong and the doctors are missing it. He’s tired of my nagging. I’m tired of doing it. But he’s lost 14 pounds in six weeks. He goes away from me to sleep for hours. My energy is almost non-existent. Trying to drag him out of his silent rabbit hole feel too big for me. I feel like I’m already in mourning.
On January 30th, we are having another day of friction. I’ve been researching and am positive there’s something wrong with Michael’s brain. I waver between frustration, anger and guilt. I don’t want to frighten or upset him because he’s lost all perspective. He wants me to be quiet. By evening, we are in total silence. He departs for our bedroom while I stay downstairs. Thinking. I feel terrible. I believe he’s sick and I want to be kind and loving, not angry. So I go upstairs to find him sitting on the edge of the bed. I put my arms around him and apologize for my behavior, stating that I’m only trying to take care of him. I kiss him, tell him I love him and suggest that he go to sleep. I go back downstairs to watch the Rachel Maddow show to catch up on the outrageous news about Trump’s Muslim ban which is being protested at airports all over the country. Suddenly, Michael is standing in the doorway of the living room. He looks at me and tells me he’s feeling confused. He asks, “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 drinks, 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…