Where it all started

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 every day is the noblest way to live. He has always been athletic, and in his 50’s that meant running a few miles every day 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 Slovaks. 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 routinized daily habits. His keys are always in the top drawer of his dresser, his sunglasses always in his baseball cap, his reading glasses 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 breathe 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 every day 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 stubbornness 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 desperate. I sent what I am sure were very traumatic pictures of Mark lying 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, reminiscent 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 tried 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 every day. 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 ophthalmologist. Mark went home to wait for the results of the next CT scan. I started calling the doctor every day to nag for the results.

On August 6th, when Mark’s oldest, Michael, texted me to tell me that Mark was nauseous and vomiting 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 sputtered 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 PICC line and his lumbar drain. Restraints 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.