Alexa, Stop!

Part of daily challenge is the total lack of control we have as the medical world swallows Mark up. We are waiting for tests, waiting for answers, waiting for treatments. I wait for Mark to wake up. I wait to see how much of him is going to return. Knowing Mark has cancer living in his head, it’s frustrating to wait for his body to be well enough to start chemo. I obsess over all those devilish cancer cells racing to multiply and invade new spaces. Each day without the chemo feels like we could be losing the race.

Mark was finally cleared for chemo yesterday. He had his first treatment today, the first of three days in a row on, 18 days off, that is the planned protocol. He tolerated his first treatment well. Meaning, my fiesty fighter didn’t fight it. You’d think with him having consented to brain surgery that it’d be no concern that he’d allow chemo. But Mark remains true to form and even with cognitive deficits and sleep aides, if he’s alert enough he picks and chooses what he’ll consent to. Yesterday, the nurse came in and handed him a little cup of his morning medications. “What’s this one?” he said, pointing to a small white pill. “It’s a sodium pill,” she said. “I’m not taking that one,” he said, and then took the others: anti-seizure pills, pain pills, anti-anxiety pills. Him saying yes to anything isn’t guarenteed.

To be fair, he still seems fairly confused. He often doesn’t remember one hour to the next. He doesn’t remember who came to visit him yesterday. The remote control for the TV doesn’t mean anything to him, he can’t use his cellphone, and the call button for the nurse remains a mystery.

Last year, I bought an Alexa. We didn’t have a stereo system, and I wanted a reliable way to play any music I wanted in the house. I had tried a vareity of small speakers with bluetooth and wasn’t satisfied with any of them. Mark and I often spent evenings taking turns asking Alexa to play songs. Mark loves music, and knows the lyrics to many songs across genres, starting from about 1940 and excluding most of the pop world of the 2000’s. One of the saddest moments from this past spring, as Mark plunged into sickness, was when Alexa stopped being able to understand him. His nose was permanently clogged (by tumor, we now knew), and when he was tired he slurred his words like a drunk. Now, from his hospital bed, as the equipment beeped around him day and night, Mark would call out over and over “Alexa, stop!” Alexa still wasn’t listening to him. He was patient with her. He would give up, fall alseep, wake up, try again.

Mark – Bad Patient

Mark spent 21 days in the neuro ICU before being discharged first to the neurology unit and then to oncology to wait for chemo to start. Mark’s body was slowly getting stronger, but one thing remained the same: Mark was a pretty bad patient. This wasn’t a huge surprise, as he was a pretty bad patient before he ever got to the hospital. At one point last spring, I answered the house phone and was told that Mark’s cholesterol was elevated. “They want you to start on a statin right away,” I said. “I’m not doing that,” he shot back. At this point, he had already stopped taking his dilantin. I knew it was useless to argue.

In the hospital, Mark continued to be difficult. Before he had even opened his eyes after the surgery, he was working on getting his restraints off. In addition to the restraints, he had mittens on both hands so he couldn’t use his fingers. He was surrounded by equipment keeping him alive, but the primitive “fight!” part of his brain was doing great. He’d work until he’d exhaust himself out to get these restraints off, a few minutes at a time, sleep, repeat. One day, he finally achieved success. His sister Marcia was visiting, and we were standing on either side of his bed. Mark started working on his restraints. We gently laughed at the impressive survival response. Then suddenly he got one mitt off. Marcia grabbed one arm, I grabbed the other, and he somehow STILL was able to use his one free hand to pull the other mitt off. He immediately went for his head, which was covered in drains and a ventilator and about 100 stitches holding his skin together. We held, I yelled, and Mark was able to get his hand to his ventilator and begin pulling. He began coughing out clotted blood as the nurses ran in and Marcia and I backed away, frozen, staring at him thrash. Marcia grabbed my arm and said, “Let’s leave. This scene will be burned into your brain. You don’t need to watch this.” I let her lead me out. She was right.

It should not have come as a surprise when I came into his room one day and the nurse told me he had pulled out his PICC line. Mark was awake sometimes could communicate a litte. I asked Mark, “why did you do that?” He said it was an accident. The nurse held out his arms and demonstrated how long a PICC line is. Not an accident. A few days later, I was told that Mark had pulled out his lumbar drain overnight. I was afraid he was going to hurt himself. They added in medications to keep him more sedated.

Once he got downgraded to the neurology unit, Mark maintained the fight position. His baseline in life is not wanting help. With the recent brain surgery, his poor vision, and challenges with balance, the doctors labelled him a fall risk and insisted that he get help getting out of bed. It was unclear if he understood what the call button was, or whether he just refused to use it. One night, I called the nurse’s station to check on Mark. They connected me to Mark’s nurse, who said, “He’s being difficult. In fact, he’s standing in his doorway right now. Sir! Sir! I need you to go back into your room.” I heard Mark mutter “No.” The nurse asked me if I could talk sense into him. I said, “If I could have talked sense into him, we wouldn’t be in this position right now.” The nurse kept me on the phone and I heard him say, “Sir, I’m on the phone with your wife right now and she wants you to go back to bed.” I heard Mark slur out “I’m sure she’d like me to do a lot of things.” I hurried off the phone, and laughed for a long time at Mark’s fiesty spirit. After a few of these incidents, the hospital posted a “sitter” in Mark’s room 24/7 to make sure that Mark stayed put.

For as much as I was terrified that he’d hurt himself, I also could appreciate his desire for autonomy in a situation in which he completely lacked control. Within a couple months, he had gone from a man who happily went to work, took care of a house and a gaggle of kids, paid the bills, andran at lunch time, to a guy who was not allowed to walk into the bathroom alone. I’d rather he fight than give up.

The Neuro ICU Waiting Room

The waiting room in the Neuro ICU is intense. Everyone in there looks strung out, like some disaster has befallen them and they haven’t bathed, eaten or slept in days. Which, to be fair, is probably true. They are there because someone had a stroke, or a seizure, or a fall, or a little cancer in their brain like Mark. No one’s sitting there hoping that the knee replacement went okay. They are there, sitting in sheer terror, wondering if their loved one will emerge the same, or alive.

There are many hospitals in our city. The one we are in is the main trauma hospital. It hasn’t fully caught up with more cushy models of newer hospitals. When you leave the flashy lobby and find your way into the recesses of the hospital, it’s pretty bare bones. A few uncomfortable couches and chairs. No magazines or books. A TV without a remote control. Armed cops in the hallways guarding prisoners who’ve come in the medical treatments. The main thing it has going for it is the beautiful view of downtown. And a medical community with a great reputation, which is all I cared about.

The first time I sat in the Neuro ICU waiting room was the night of Mark’s surgery. The main surgical waiting room, a windowless basement affair, had closed up shop for the night. One by one throughout the evening, cases were removed from the monitor until Mark was the last case listed, with “In surgery” still indicated. My parents and I took the elevator up to the 9th floor to wait in the Neuro ICU for the surgeon to emerge and hopefully tell us everything went well.

The waiting room was empty when we arrived. A stack of blankets and pillows was wedged into a nook near the windows. I grabbed one of each and found the light switch to darken half of the waiting room. I curled up on a two-seater plastic chair to try to sleep.

Soon, a woman came in talking at full volume on her phone. My dad gave me a look, and my mom gave my dad a look, and I said, “It’s fine, dad.” He waited a few minutes, and then went over and said, “Excuse me. My daughter is trying to sleep. Her husband is in surgery and we’ve been here for hours. Could you talk more quietly?” She gave a half-second stare with a pregnant pause, and said “I’m sorry about your daughter, sir. My daughter is unconscious and has been here for 5 days. I’ve been sleeping here for 5 days.” It was her stack of pillows and blankets we had pillaged unintentionally. My dad tripped over his words to apologize and wish her and her family well. We settled back into our respective waiting room activities.

Over the next days and weeks, I met some wonderful people in that room. That woman was one of them. She was absolutely distraught. Her daughter, a 36 year old mother of one, had suddenly collapsed one night. She was not improving. Her mom went throughout the day went from sleeping to crying to arguing with the nurses and doctors about her daughter’s medical care. She actually almost never went in to see her daughter – she said it was too painful to see her on a ventilator. One day, she was told her daughter would die and that it was time to take her off life support. A a dozen family members came into the waiting room to wait, and to say goodbye. I hugged her and told her I was so sorry as she sobbed “That’s my baby they are talking about!” She was angry. She wanted more to be done. The next day, she was told they could operate on her daughter to try to stabilize her, and this mom was again raised up on a tiny balloon of hope. By the time Mark was discharged from the unit, 21 days later, she was still hoping and praying.

I made a dear friend in the Neuro ICU waiting room. Annie was there everyday, in her blue sweatshirt and shorts. Her mom, in her 70’s, had fallen and hit her head. A scan revealed a benign tumor, but her platelets would not stabilize. Everyday the doctors tested and tried new things, but nothing would stop her body from destroying the platlets that they kept giving her. Her dad, a local cop, would come in between shifts, worry lines etched on his stern face. “What am I supposed to do?” asked Annie, who lived out of state and had a family of her own to take care of. “What am I supposed to do?” asked her dad who held down three jobs. Annie taught me how to arrange the chairs for the most comfortable nap. I brought Annie food when she wasn’t eating. When the ENT surgeon rounded on Mark, Annie was the first person I told what I had heard. Stage 4, rare, aggressive, poor prognosis. “This is so fucked up,” she said. We said that a lot to each other over the weeks. We texted each other late at night and saw each other the next morning to do it all again.

In a way that is difficult to convey, there was a beauty in the starkness of what life became during those weeks. A tiny community deeply bonded together by trauma showing us exactly how powerless we are. Every story in the Neuro ICU waiting room was distinct, yet our fears were held in common. We didn’t know where the line was between life and death for our loved one. We had to confront questions about quality of life. We had to learn patience or we’d fry our brains in anxiety and fear. We had to hold on tight to each other, riding the waves that came ceaselessly on a dark horizon.

The Scene

Mark’s surgery lasted until late in the night. I went back to my friend’s house and slept a few hours, and then took a Lyft back to the hospital. On the 15 minute drive, the Lyft driver was chatty. “What’s taking you to the hospital today?” he asked. “Well,” I said, “You are taking me to the hospital to see my husband for the first time after he’s had brain surgery. I’m not sure if I will be able to recognize him. I’m not sure what he’ll look like.” “Oh, okay,” he said, speaking carefully. “I hope everything is okay for your husband.” I remembered how early in my relationship with Mark, when I’d tell him something that was worrying me, he’d say “I hope it gets better.” After a few of those responses, I told him that this generic statement back agitated me. It then became a joke. I’d tell him something like, “I’m worried that Alma is depressed,” and he’d lightly say, “I hope it gets better!” I could see now that he had used this phrase because sometimes, when faced with something that is so far beyond our control, all you can do is hope for a good outcome.

Mark was recognizable. I’m not sure how you can remove part of someone’s skull, do some patch work to replace eroded bone, and then zip them back up to look pretty much the same, but they did. “The swelling and bruising will come,” the surgeon warned. But it never did. He looked like Mark, hooked up to a lot of equipment, with a stitched incision travelling over his head from ear to ear. Monitors beeped and urine output was checked and the ventilator helped him breath. Nurses and doctors moved quietly in and out all day long. A sign on the door warned visitors to put on the blue plastic gowns and gloves because Mark had a tiny bit of MRSA residing in his nose. He was asleep. I could sit there and hold his hand, and other than that, I had to wait to see how he would be when he woke up.

Our Story Begins

Mark and I met in the spring of 2014. His wife had died a few years before, after a grueling battle with ovarian cancer. He was raising three boys who knew a loving family marred by the tragedy of years of health struggles and ultimately losing a parent. I was raising two teens, who knew an initially loving family that was then marred by the tragedy that marital decline and divorce can bring. We blended all of this into one household as the cool evenings of autumn arrived in 2016.

This next part of our story begins around February 2019. Mark had been seeming kind of off for a couple months. He’s the stereotype of the absent-minded professor. Incredibly intelligent, a mechanical engineer who is gentle and kind. He’s got a stubborn streak, and he is fiercely independent. He is stoic, not one to complain or fuss, and believes that quietly doing the right thing everyday is the noblest way to live. He has always been athletic, and in his 50’s that meant running a few miles everyday and joining me at the gym for ergging and a swim. He was raised in an industrial river town, the youngest of seven siblings born to second generation Slovacks. He enjoys the simple things in life: taking a hike, cooking dinner, doing a crossword puzzle, spending time with kids.

Mark has a lifetime of training in compensating for his ability to forget simple things. He always described himself as the kid that would forget his umbrella. Over time, he developed highly routinzed in daily habits. His keys are always in the top drawer of his dresser, his sunglasses are always in his baseball cap, his reading glasses are always on top of the hutch in the dining room. In the winter of 2019, he continued to be on top of these basics. But he started to do a little worse at remembering things, such as whether his youngest needed to get to fencing or soccer. Whether I had a day off from teaching. Whether we had plans for Friday night. It was easy to excuse all these things at the time. He was tired, he was stressed, work was hectic, our lives were busy.

In February, as we chatted while getting ready for bed, Mark stopped answering me. His face looked frozen. His eyes were glued to mine, but his words were not coming. I guided him over to the edge of the bed, where he sat and swayed like a bobber on the surface of the water. “Mark! Mark! What’s happening? Can you hear me? Say something!” Was it a seizure? A stroke? I had zero experience with either. He stopped swaying. He blinked at me a few times. “Mark, what just happened? I think we have to go to the hospital,” I said. “I’m just tired. I have to go to sleep,” he replied, and then he pulled the covers up and closed his eyes. I was in full panic. What the heck? I kept talking to him. He kept ignoring me and trying to sleep. I told him we had to go to the ER. That I was scared. That I’d never seen anything like that before. That it wasn’t normal. Nothing worked. I called my mom for advice. I called his sisters. I called his retired PCP, Chuck, who was a family friend of Mark’s who I had only met once. I explained to Chuck what happened. Chuck said, “Is he taking his seizure medications?” Ummmm…..what seizure medications? “Are we talking about Mark?” I couldn’t get my head around this. “Yes,” Chuck said. “He’s been on seizure meds since the 1990s.”

Mark had left this detail out of our dating life. He had two seizures in the early 1990’s, and then never again. I’ve never gotten a good explanation for him not telling me this little part of his life. Was he embarrassed? Did he really think it wasn’t a big deal, as he said? Did he just want to wish it away?

What followed were weeks of negotiating and begging him to go to a doctor. Mark hadn’t had any health problems since we met, so I was completely blindsided to meet the side of him that was pretty confident he’d live forever. He had an annual check up at work, and that was plenty for him. When Chuck had retired, he hadn’t bothered to find a new PCP.

By phone, Chuck tried to talk sense into Mark. Mary, Chuck’s wife, came over and tried to convince him to get back on medication and go see a doctor. It took a month to get Mark in with a new PCP. Mark got an EEG. It didn’t show anything of note. He was put back on dilantin, which is what he had been on in the 1990’s. Sometimes he took it and sometimes he didn’t. But he made it very clear to me that he was in charge of his health, and if my input was wanted, he’d let me know. Anytime I brought up taking his medications, he’d shoot me down. A rift started to form.

That takes us to late spring. Mark had started telling me in March that his nose was stuffed up. Just allergies, he said. By May, he still couldn’t breath out of one nostril. He refused to go to an urgent care to see if they could relieve his discomfort. He was living more and more in his own head. He had a huge, multi-year project that he was principal engineer on coming to a deadline in July, and he went to work everyday and plugged away at it. He was distant from me and the kids. We all noticed an increasing forgetfulness. He repeated questions at the dinner table that had just been answered. At dinner each night, I’d carefully review the schedule for the next day. The next morning, I’d call him on my way to work and again review the schedule, gently suggesting he write a note for himself about anything important. I began to seriously fret about our relationship. Could I really manage a relationship where I couldn’t expect the other person to remember basic details of each day? Mark was only 56. Was this early dementia? What would he be like in 20 years? It didn’t help that he would get agitated when I expressed concern. I became more quiet and withdrew.

In early June, Mark had a second seizure. It was the same as the first. He suddenly couldn’t form words. This time, I could also see what looked like a wave of electrical activity flow through his facial muscles. I immediately said, “Let’s go to the ER.” He followed me out of the house and into the car. I worked to keep up banter on the 15 minute drive, so that I could keep track of his ability to communicate as well as try to keep him relaxed. We got within one mile of the hospital when he said, “I’m not going in there. You can’t make me.” By this time, I knew I couldn’t. His stubborness combined with whatever blocked him from being able to cross the threshold of medical intervention was impossible for me to battle. I had tried it all already: what about your kids? What about me? This isn’t going to work if this is the way you’re going to move through life. This very logical man was not thinking logically. I turned around and drove home.

Within a couple weeks, Mark started to have what I can only describe as catastrophic nosebleeds. I’d wake up in the morning to find blood on his pillow. Blood caked on my hair. He came home from work one day as his nose bleed lasted for four hours. Unsurprisingly, he would not go to an urgent care center. He would not listen to me or his kids when we told him that this was not normal, and that this was not okay. He sat on the couch as blood filled tissue after tissue. He’d stagger to the bathroom to get a new tissue, and he’d smear blood on the wall as he went. I told him to pinch his nose and hold if for 15 minutes. He held if for 3 minutes and gave up. The bleeding finally stopped on its own.

I started worrying more. I called his family. My family. Friends. Relationship aside, I was starting to worry that Mark was having a serious health problem. A week later, he came home from work with a nose bleed that went on to last 10 hours. Same stubborn refusal to get treatment. I was desparate. I sent what I am sure were very traumatic pictures of Mark laying on the couch with a hankie filled with blood stuffed up his nose to his sisters and our dear neighborhood friend, Corrine. I tried to keep the boys out of the house for as long as possible. Corrine’s husband Dennis came over and sat with Mark, carefully and thoughtfully trying to convince Mark to go to the doctor. Mark said he’d be fine.

I needed help. The situation was getting more and more out of control. Mark would not listen to reason.

The weeks of July and early August are a jumble of chaotic memories. Calls to his family. Cold calling his friends who I barely knew. Calls to my family and friends. The stark fears of a life unravelling, reminicent of the times in the past that my life had unravelled. This time, though, I remained stronger. I dug deep and turned back on the engine of survival mode that I knew was in me. I asked Mark to go to couple’s counseling. He agreed. In the one session we attended, I try to listen objectively to Mark’s words. What I heard was someone who I could not understand and did not recognize. He threw a sharp barb. He said things that didn’t make any sense. He said he thought it would be reasonable for his 19 year old to have a 7 pm bedtime. He said that by encouraging his 17 year old to join marching band in high school, I had put him on the path to forming negative friendships. We went home, and I gently suggested that we might be better apart than together. He agreed. It was a kind conversation and sad parting when I packed a bag and left. Difficult as it felt, I knew I had no other choice. I was deeply worried about him, and his boys being alone with an irrational dad, but ultimately I had learned that you cannot control someone else. He was the captain of his ship, and if he wanted to take it down, I could not stop him.

I went to a friend’s house for the next couple weeks. During that time, I kept checking in with Mark’s family and friends. I texted the boys to check on them. Neighborhood friends stepped up and invited them all for dinner, organized activities, brought them food. The boys reported to me how Mark was doing. He wasn’t going to work anymore. He just sat on the couch. He said he felt sick. He’d try to get Alexa to play music and “she wouldn’t listen to him.” I finally started visiting Mark everyday. He seemed open to my visits. We kissed goodbye each time. I told him I loved him.

In late July, when Mark started to have blurry vision in his left eye, he agreed to go to an ENT. He ordered a CT scan, and then made a follow-up appointment for Mark with an “ENT specialist” at the hospital in 10 days. I looked up the name of the doctor, and it was a head and neck cancer specialist. The boys continued to tell me more symptoms, and each time I would call the doctor and share information. His left eye started to slowly move out of position and then bulge. Mark’s sister from Delaware drove in to take Mark to his follow-up ENT appointment. She texted me to tell me that Mark reported he could only see “darkness” out of his right eye. He was going blind. They made an immediate appointment with an opthalmologist. Mark went home to wait for the results of the next CT scan. I started calling the doctor everyday to nag for the results.

On August 6th, when Mark’s oldest, Michael, texted me to tell me that Mark was naseous and vomitting all day, I called the ENT specialist to report this new symptom. “Bring him to the ER,” he said. I called Corrine and she immediately offered to drive him. I met them there. My parents met us there. Friends met us there. More scans. A soft mass, they said. Admit him, they said. Hours passed. My parents went home. Late at night, a neurosurgeon brought in consent forms. He explained that Mark needed a bilateral craniotomy. That there was a tumor, and it was behind his eyes and in his skull, pressing on his prefrontal cortex. I don’t remember much about this conversation. The words “eroding his eyebrow bone” came out of his mouth. :”Stop him from losing his vision.” “Buy him time to give chemo a chance.” “As soon as we can get the team together and get an operating room.” Our friends Kevin and Liz were there. I was in shock. Liz quickly took over, carefully repeating things the doctor said to Mark, making sure Mark understood what he was signing. Mark signed. Liz and Kevin stayed in Mark’s room and I went out into the hallway and called my parents “They are going to cut open his skull,” I spurt out between sobs. I needed to get air. Liz and I left Mark with Kevin, and we wandered through the city neighborhood at 11pm, looking for an open bar. We found one. When it closed, we found another. Liz grounded me as my thoughts spun like a tornado in my brain.

On August 8th, Mark’s surgery started around 3 pm. It lasted until nearly midnight. Many dear friends and family came and went in the waiting room. People brought food and decks of cards. The surgical waiting room filled and emptied. My parents, in their 80’s, had refused to leave. The surgeon finally came out and said everything they wanted to accomplish was accomplished. They removed all the tumor from his brain cavity and eye orbits. They left the tumor in his sinuses. Chemo and radiation would need to take care of that. We would have to wait for pathology to come back to know exactly what kind of cancer we were fighting.

Mark spent the next 21 days in the neuro ICU, before being placed in the oncology unit and ultimately discharged to skilled nursing. I moved back into the house to take care of his boys. There are many stories to tell of those days. Mark being ornery and pulling out his pic line and his lumbar drain. Retraints and 3% saline drips and social workers and PT and OT and the quest to find a nurse navigator to help us through it all. Finding out that the tumor in his head was a little smaller than a baseball. Reading about prefrontal cortex syndrome. Wading through articles about SNUC in medical journals. Learning what ADL’s are and Mark’s infamous escape from skilled nursing. His three weeks in a senior living home before I decided we could take care of him at home. There are many stories and yet sometimes I think the details don’t matter very much. What matters is that Mark is Mark, and we love him, and he’s very sick, and we’re doing our best to take care of him. As my old therapist once said, we are all doing our best all the time, but sometimes it’s our shitty best. I’ve had to learn so much. Sometimes I have done things well, and sometimes I’ve really struggled. It’s okay. It’s our life. This is our story to tell.

Ever onward, D.