Be 278 – A Cancer Journey – The Death March – This Isn’t Like Television – Chapter 11 – Part 1

I’ve never wanted to see the future. Through our years together, when Michael and I would have speculative conversations about the possibilities of technology and science, we’d invariably discuss the fictions and films of our lives, with a favorite topic being time travel. He always wanted to go forward to see the mysteries of what lay ahead. Not me. I wanted to go back for a closer look at what already happened, pretty certain that knowing what was coming could be too scary and maybe more than I could handle. I was right. If I’d known that I was going to live in a hospital for 32 days, watching my beloved partner experience brutal treatments, being constantly enraged at the hopeless inadequacies of the health care system which we depended on, while watching him slowly disappear in front of me, I couldn’t have borne any of it. But that’s where I was from January 31st through March 4th, 2017. Even after almost 5 years of hurling my intellectual and emotional skills at Merkel cell carcinoma, nothing prepared me for how Michael’s life was going to end. And if I was unprepared, I wouldn’t know how to categorize his response to his nightmare diagnosis and prognosis. Four weeks survival was average with this carcinomatous meningitis. I suppose it’s intolerable for anyone who’s had distant metastases to imagine your brain being suddenly and insidiously attacked by a gelatinous fluid rather than a tumor, but that’s what was happening. We had discussed end of life issues throughout the course of his disease. Imagine my surprise when the nurse came into our room with the DNR bracelet Michael had placed in his orders years earlier, and he refused to put it on his wrist. I was stunned, the nurse was baffled and eventually, I asked her to leave so I could talk to Michael alone. He’d changed his mind. He brought up unlikely possibilities about potentially being unconscious and sustained by machines until miraculously, a cure would be found and he would be revived. I sat wordless, trying to rapidly process what was happening to him, to me. Was his brain so far gone that he really thought this made sense? Or was he so insistent that he wasn’t going to die because he could never accept that reality? I sat there, looking at my life’s love, wanting to be the best friend, partner and advocate that I could be. But the prelude to this moment had been a horror show of his confusion, him not eating enough, barely drinking, fading away. What was I supposed to do? Ultimately, there was no real choice for me but to give him the respect he deserved as a still functioning human being and walk with him through whatever he chose, altered mental state or not. His choice was treatment and the most remote chance at life. So I was going to help him, regardless of my disbelief and despair. I’d signed up for this decades ago. But as any person would feel, I didn’t know if I could do it and I sure wasn’t going to like it.

For the first week or so, constant fluids and my continuing nagging about eating allowed for a semblance of whatever could be called the recognizable Michael to appear. Mentally I knew that I didn’t believe he could survive. But I couldn’t squash my intense desire to get the miracle. He began receiving Keytruda again although no one knew if it could cross the blood/brain barrier. Michael then chose to go through what I viewed as the most barbaric of treatments, whole brain radiation. Our kids were split on that horrific treatment, torn between wanting to extend his life at any cost and facing his certain death. What became clear to me was that to give up on treatment, when they believed so much in Michael’s indomitable strength and spirit, was out of the question. So we struggled along, waiting for the radiation oncologist to design the plan to fry his brain, hoping a viable person would still be recognizable to us on the other side.

Early on in Michael’s illness, he’d told me that if or when he began to diminish physically or mentally, he didn’t want to see anyone, including our kids. He was always intensely private and proud, quite unlike me in many ways. In time, he realized he wanted to be with our kids as much as he could. Aside from them, he saw only one of our son’s two closest friends, who basically flew into town without asking our permission, and my younger sister who’d been more his family than anyone from his own. Aside from them, it was only me and our little family who came to visit whenever they could, after work, at midday or early evening. Our son, tying up remnants of his PhD work in Panama, was expected to start a postdoc in Guam in February. So very far away – the other side of the world.

Our entire situation was surreal. Except for one time when I ran home to do laundry, I was now in permanent residency in Michael’s room. When I could sleep, it was on a small couch that flattened into a palette. Real rest was almost impossible as the night was broken up by phlebotomists coming in for blood draws and nurses checking vitals. The cancer floor was horribly understaffed. Since I was always there, it didn’t take long for me to figure out that there were never enough people. Patients on this unit were terribly ill, and both nurses and techs often found themselves in situations where they unexpectedly got stuck with someone in great need, leaving other patients who were supposed to be seen once an hour, alone for long stretches of time. It was not their fault. But I quickly began taking on jobs that belonged to the professionals. The plan for meals was like freestyle eating on a cruise ship – the patient was supposed to pick up the phone and order their meal choices during cafeteria hours. How was that going to work for the guy with brain cancer who was confused and exhausted with no appetite? If I hadn’t been there, Michael would either have starved or been force-fed through tubing. I made friends with several nurses and techs, but I terrorized the hospitalists and residents for the absurdity of their organization. At the same time, I was coping with profound frustration, fear and exhaustion.

For a brief time, Michael maintained a connection with a moderately ordered life. He got out of bed, showered, and ate sitting up in a chair. But he rapidly devolved into confusion and developed symptoms which changed his status. With blood pressure variations, the hospitalists started medications which ultimately made him dizzy. Then they categorized him as a fall risk due to the medication-induced dizziness which meant his bed was set with alarms which he continually set off as he attempted to use the bathroom or shower independently. Most frequently I was at his side before anyone else arrived. The whole situation was unnerving, agitating and ultimately a disaster for his maintaining strength and muscle tone. They confined him to the bed. That confinement produced other side effects, causing the staff to use compression equipment and socks to prevent blood clots. He removed everything the minute the staff left the room. Physical therapy appointments were often missed. Trying to get him to use a walker was virtually impossible. He wrestled continuously with thickened saliva, the result of the surgical removal of his largest salivary gland, sixty six lymph nodes in his neck and thirty rounds of radiation five years earlier. When he managed to eat, he constantly struggled with clearing his throat which ultimately led to vomiting. Or maybe it was really all from the cancer. Either way, he began to weaken for a variety of reasons. And then it was time for the brain radiation to begin. He returned from the first treatment feeling dizzy and nauseous, saying that he was pushed too fast through the halls. I struggled with despair, wondering how we got to this dreadful place. His hair almost immediately began to fall out in clumps. We finally shaved it off.

February 13th, 2017 – Hospital cancer blur. Round the clock, people in and out, in and out. Blood tests, beeping IV, Michael up in the night three or four times to urinate. Me leaping up in terror, afraid he’ll pull the tubing out of his arm. I turn off the alarms on the bed myself. He is getting weaker and dimmer. Short term memory is virtually gone. No clue as to whether the Keytruda or the three radiation treatments so far have done or will do anything. He continues to have a mostly flat affect and rarely seems aware of me and what my life feels like. It is an incredibly swift loss. Four days before the hospital we were told he had clean scans. Whiplash. Tonight he re-emerged for a moment and said he loved me which made me break down completely. Mostly he is angry and annoyed and wanting me to be quiet and stop telling him to eat. It is daily torture. Over and over and over. I’m trying to save his one chance to survive but the window is getting too tiny. Trying to keep him off the artificial feeding devices like TPN which will destroy his liver and very likely infect him. I am trying to keep his body intact from other problems and just hit this cancer. But he resists and makes little attempt to cooperate. He’s too confused. I keep giving him Boosts which I think is all that’s keeping him alive and barely, at that. The kids are in and out of here and both are tormented. Truly, death must be easier than this. But what a dreadful thing to say and a worse way to feel.

February 14th, 2017 – I have finally made so much racket that the head hospitalist is visiting daily. At least there will be consistency and he understands that I know what’s happening here. Our radiation doc says he doesn’t expect to see any improvement in Michael for a couple of weeks. I’m trying to keep him alive and get him home which is where he wanted to be. Happy Valentine’s Day to me. I think I had my last one with a boyfriend last year. I managed to get little gift bags together for the boys from the shop in the lobby, and flowers for my girl, too. Michael heard me talking about it and said he thought he hadn’t gotten valentines for anyone. Ya think? He did emerge from his blackness a few times yesterday. He held my hand once and told me he loved me. It feels like weeks since I’ve felt any interest from him. He lifted his head tonight and asked me if there was something wrong with me. Twice and very insistently. A little while later, he suggested I go to sleep. A piece of him that is my partner is still really in there. But he’s also angry, contrary and mean. Furious that he is falling away from life. Such astonishing tenacity.

February 19th, 2017 – How fast it’s all slipped away. Twenty days in here. Michael is disappearing. Today he couldn’t remember his birthday. He couldn’t remember the kids. It comes and goes. What if he survives and is a demented person? How will I ever manage? Should we finish this treatment? Is there hope? Was there hope? His insistence on wanting to live may destroy us both. I am so lonely. I see no joy ahead of me. Maybe I should kill us. Henry will go to Guam in two days. The dog will be living with his friends. I have no idea where.

February 21st, 2017 – Michael is on dexamethasone which seems to be helping. He got up early to shower, held his breakfast down and had physical therapy. I am so wiped out I went to sleep at 10 pm. Suddenly, Michael is standing over me as I lay on my cot, like an apparition, asking me if I’m ok. He slipped away from the tech and checked on me. So unexpected. There are so many things wrong here. Only one nurse has checked Michael for bedsores. Another incorrectly diagnosed him as having thrush. I had to fight her on that. Morale is low among the overworked staff. Some days no one has time to clean the garbage. Inexperienced lab workers and techs flip the lights on in the middle of the night and talk in booming voices. I converse with the most sensitive nurses about how to help educate these people even if it’s not in their job description. Michael is always freezing. I’ve found the blanket warmer so I can cover him myself. Even the bathroom was designed incorrectly. The drain is so far away from the shower that a dam of blankets has to be built to prevent flooding and dangerous footing for the patients. I am wrung out.

February 22nd, 2017 – The day started out decently. Michael fed himself and said he knew he was eating a pathetically small amount of food. He seemed less altered. He was affectionate and loving, touching my face, whispering my life into my ear. He said he wished we could sleep together. I played music for him, the Dead, the Allman Brothers, Fleetwood Mac. He was moving his feet and smiling. Then I played Harvest Moon and he sobbed. This was the first and deepest expression of emotion I’d seen from him since the night before I took him to the ER on January 31st when he said he was confused and he cried. Then it was time for the radiation treatment. He felt rotten when he returned but I gave him nausea meds, he ate and then went to sleep. He’d drifted back to a strange mental state, asking me why we were living in a hotel. After a 45 minute nap, he suddenly woke, saying he had to use the bathroom. He lurched out of bed without the walker and began to spin around. He made it back to the bed, felt sick and vomited up everything he’d eaten. I feel so defeated. The radiation is just too much for him. Although we also have to contend with the radiation machines breaking down and the treatment being delayed. Should we care? We have another day of him crying frequently, appalled by his weakness and how fast life has changed. He says he doesn’t want our life to be over. I can barely find language for comfort. My grandson asks me if Michael will die. And if he’s contagious. He’s only six. My daughter says I’m like a cockroach, surviving everything. We’ll see.

Michael was clearly responding to the hideous whole brain radiation because his emotions had returned. His crying became frequent as he recognized the pace of his deterioration. For the first time he was able to verbally express his desire to live, along with the clear understanding that he’d faded and thought he could die. A cruel way to at least temporarily be somewhat better. At night after shift changes, our young nurses and tech friends come to talk with us. Apparently our room is the only one on the floor whose television isn’t turned to Fox News. We talk politics and they sweetly tell us they hope for a relationship like ours. How unexpected at this most painful time in our lives. I still am providing a significant portion of Michael’s care. But I’m definitely afraid of what will happen when he’s released. We are working on his eligibility for home health care. Having to cope with the bureaucratic rules of insurance at this juncture enrages me. I discover that the decision on home health care coverage is in the hands of a physical therapist who’s seen him twice. I rapidly enlisted the help of a case manager to address the craziness of that matter. What happens to the people who don’t figure things out?

Radiation was coming to an end. Michael was haggard and almost unrecognizable. The confusion came and went. I’d been reading about hospital delirium and wondering if that was a contributing factor to his mental state, along with his disease. He continued to cry often, asking if he had a terminal illness and why we both seemed so sad all the time. I had a hard time managing this stuff especially when I’m engulfed in the terror of what will happen when we go home. I’ve arranged for a hospital bed for the first floor room next to the bathroom. I never dreamed that when my mom moved in with us and we created a handicapped accessible space, that we’d be needing it for Michael so few years after her death. I got a walker and a shower chair and all of his medications. Was I really ready?

March 3rd, 2017 – Radiation was completed yesterday. Do we know if it did much? Not yet. Much weeping by Michael and a stream of consciousness mental state. Talking about his very much alive parents with whom he hasn’t spoken in years and our kids. I tell him that he’s grieving and he replies that he thinks he’s grieving himself. I tell him, yes, and he says he hopes he’s wasting his time. He’s still in there.

On March 4th, Michael was supposed to be released. At the last minute our oncologist ordered a blood draw, worried about his liver enzymes and thinking perhaps she’d hold him a couple of extra days. In the end, she let him go. We have lived there for 32 days. Michael was glad to be going home. I was terrified for the next, and what I felt was the final portion of the orphan cancer journey. Almost five years since it began. This is not like television, by a long shot. Homeward bound.

3 thoughts on “Be 278 – A Cancer Journey – The Death March – This Isn’t Like Television – Chapter 11 – Part 1”

  1. I have to try hard not to sob. I allow the tears but no sobbing. I identify so much altho I am not nearly as sick. Confusion and paranoia abounds as does anger and some self pity. I also have no appetite for the first time in my life and I am losing weight consistently. Down 55 lbs so far. I am on chemo but know nothing of my future. I do know they say incurable.

    1. Oh Frank. I’ve been thinking of you often these past weeks, knowing you’re in treatment and what that can be like. The myriad of emotions and thoughts that people contend with during their private grappling with disease is so intense. I hope you can find your moments of respite with Nok and Frankie. For us, we literally lived in minutes, trying to be aware of the good ones during the avalanche of everything else. Sending all good feelings your way.

      1. In reference to your constant complaining at the hospital, me too…..have found that the old axiom “a squeaky wheel gets the most grease.”, is true. I am still out patient at Northwestern (half mile from my home) and they are wonderful. Still I complain when appropriate. Nok is a wonder wife and nurse, also confidant….I was afraid to share early on but did and the resulting empathy was dearly appreciated. Easy now. Frankie a constant source of living in the moment.

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