For Love

For two hours, my Valentine’s Day included Mark. During the morning hours before I arrived, Mark worked with speech, occupational, and physical therapy. Bobby wants to be ready to coach Mark at home, so he’s been joining him at the rehab a few days a week. Bobby updates me on what I’ve missed. The occupational therapist had presented Mark with cards with images of danger. For each, she asked Mark what he would do if he encountered the situation. “Like a fire?” I asked. “Nah,” Bobby reported, “Like an area rug.” In physical therapy, Mark worked on going up and down stairs and walking with less support. In his dysphagia eating group, Mark did not throw up breakfast directly onto his tray, as he had the previous two days. He was advanced from a full liquid diet to “mechanical soft foods:” chopped-up this and that, soft-cooked vegetables. When I arrived, he was dead asleep from all the effort. I put his unopened Valentine’s Day card on the bedside table, crawled into the hospital bed with him, and quickly fell asleep.

I start back to work tomorrow, having used the amount of FMLA that I am willing to at this point. I am hoarding the remaining weeks in case Mark needs me more at another time this year. It could happen. I love teaching, and I look forward to normalizing my life. But I feel anxious about returning to the bright, loud world of laughter and learning. I’m out of practice of “normal life” away from beeping machines and wheezing sinuses. I’m also trying to prepare for the “how’s Mark” questions. I’m testing out: “He took a dip in January, and then another in February, and now he’s slowly getting stronger.” I think this is a kinder approach rather than the more descriptive reality: “He’s in an acute rehab hospital, in a wheelchair, in disposable hospital briefs, with a feeding tube. He can’t see well, hear well, or reliably hold a thought in his head.” I could try giving an illustrative example. “Last Friday, the speech therapist asked Mark to name a word that starts with the letter A. Silence. She prompted, ‘How about a fruit that starts with A?’ Nothing.” But this is an incomplete picture, because sometimes Mark is witty and present. When my parents visited last week, they noticed pictures of Matthew and Ben on Mark’s bulletin board, but not Michael. “Where’s Michael’?” they asked him. “They are all among the missing,” he replied. The kind people I work with will inevitably ask me how I am doing, with a concerned and sincere little wrinkle in their brows. I’m trying out a boxing metaphor. I’m from Philly — it can’t be helped: “I’m in an endless bout in which I get knocked down over and over, crawl my way back up, bloody and weak, and have to keep fighting.”

Bobby tells me that in recovery, they have a saying: “First thought wrong.” I’ll probably stick with “hanging in there.”

It is hard — very hard — to watch Mark have setbacks. The bar for wellness gets lowered ever more. More than I knew it could. He descends to some new low, and I hunker down with him, cheering him on as he takes incremental steps forward. I scrape the sides of my reserve of energy and come up with some scraps to offer. He tells me that his vision is not getting better. In fact, it has returned to closer to what it was in July when the tumor was wrapped like a viper around his optic nerves. I want to understand how he sees the world. “What’s it like?” I tried again. I’ve asked this question many times, and he usually does not answer with any clarity. This time, he seemed curious about his vision. He slowly took turns closing his right eye, then his left, looking off over my shoulder. Finally, he said his right eye sees gray shadows and shapes. His left eye can see quite well. His brain is having a hard time integrating and making use of these two fields. “Well, at least you’ve got one good eye,” I responded. And then, “This could work out for me. As I age, you will only sort of be able to see me get older!” He smiled. I wrestled down another piece of loss rattling around in my brain.

Yesterday, after letting him sleep for a while, I asked Mark if he wanted to talk a walk. My stubborn, strong, independent man silently moved from his bed to his wheelchair “to save my strength,” he said. I followed him out of the room. He pulled himself along through a combination of tiny paddling actions with his feet, supplemented by his hands inching the wheels forward. I took the tiniest, slowest steps possible to try to match his pace. We went into the dayroom where Mark eats his meals under the watchful eyes of the speech therapy team. I turned channels on the TV and found a NASA station. They showed that famous image from last year– the first ever image of a black hole. It doesn’t look like much: a black circle with an irregular glowing arc around the lower half. They explained how time and light warp around the black hole. How nothing can escape the event horizon, and if that boundary is crossed, whatever has crossed it is pulled eternally into the density and darkness in the center.

These last few weeks have pushed me to that line. When I look at Mark’s unseeing eye, or smell tissue decaying on his breath, or watch him choose the wheelchair rather than walk, I find myself getting sucked in too close to that dark center. My Mark who could do the New York Times Sunday crossword puzzle, did geometry for a living, and held the motto “I got this” proudly. I have to back away, look away, escape to a safe distance or I fear I will not be able to return.

When we first were dating, I told Mark that I wanted to be known, to be accepted for exactly who I am. We know more of each other now in so many ways, and yet we also have less. He can’t accompany me as I move through the world. He can’t share the daily stories of life with me. We can’t go to restaurants, or the movies, or for a walk in the park. The world of us is as small as the part of the couch or bed we occupy together when we sit or lay down. It’s as small as the breaths we breathe as we hold each other. The gentle boop on the nose we give each other. We have no texting, no phone calls. There are few knowing glances, few moments of shared laughter. What we have is love in our hearts, and the simplicity of being able to be next to each other. In a neurology unit, two oncology units, a skilled nursing facility, a senior living home, an infusion center, and now at an acute rehab, Mark lays in bed and waits while the world of medicine works on him. In each place, I have wedged in between the safety railing and Mark. Mark curls his cold, tired body up against mine, finds my hand to hold, and we sleep. I wake when doctors and nurses come in, push the buttons on the bed and slowly raise us up to a sitting position to talk. We’re like John and Yoko on an interminable Beds-in for Peace. Beds-in for Love.

When I left that Mark yesterday, he wanted to walk me out. He got into his wheelchair and wheeled down as far as the nurses’ station. I leaned over for a kiss goodbye. As I walked down the long hallway, I turned back once to look. He was watching me with his big, quiet, blue eyes. He raised a hand to wave as he sat watching me walk away.

Perspective

Mark was admitted to the hospital via ambulance to the ER last Tuesday. At 5:45 am the next morning, I returned to the hospital and looked at my phone. Battery power at 20%. I dug through my hospital “go bag”: my charger was missing. The nurse told me that the hospital only has one charging station — in the ER waiting room. So back I went to the ER to sit for thirty minutes and charge my phone. There were two receptionists at the front desk, and two men sitting in the waiting room chairs. Man #1 was talking to the receptionists about politics. “There’s a shiny devil in the White House, and he’s there with his whole family,” he shook his head. The nurses made comforting sounds. Man #2 looked at Man #1 for a long pause, and said “Hey, I know you, man, we did time together.” I could see Man #1 stiffen. He didn’t make eye contact. “Man, I’m trying to have a conversation here.” Dissuaded, Man #2 walked over and sat next to me. His eyes were red. “Hey, can I buy you somethin’?” His speech was difficult to understand. I just looked at him. “Whatda you like, liquor or beer?” It was 6:00 am. I wondered how often this pickup line worked. I said I had to go upstairs because my husband was there. “Aw, that don’t matter,” he said. He wandered away and tried to get the receptionists to give him some orange juice. They said they couldn’t because he’d already been discharged. So he checked back in to the ER so he could get some orange juice.

Over the past month, if only I could have gotten Mark to drink something. Not that he needed liquor or beer, for sure, but the orange juice would have been great. I gave him everything I could. I offered it all. He could tolerate less and less. Alma asked if I was counting his calories. At first I wasn’t, and then as time passed, I did. 1200 calories, 800 calories, 200 calories a day. I knew it was not enough. I reported it to the doctors over and over. No, we did not need to talk to the dietician again. I knew what to do. He would or could not do it. They weighed Mark. Rationalized with him. Urged him. Mark is nothing if not a rational guy. This was not about logic. He told me one day that he couldn’t seem to communicate with people why he couldn’t eat. People who have had cancer, like my mom, understood. Everyone else, including me, couldn’t.

Mark fell off the tiny ledge of wellness he was clinging to so fast it was startling. Last Monday, the doctor thought he could hold off on the feeding tube. “Try to drink two Ensures a day, Mark, and then try making it three.” By Tuesday, he was admitted to the ER and by Wednesday, they decided he needed the feeding tube. I somehow hoped that the feeding tube would be the magical device that would turn things around quickly. Instead, he quietly watches people when they talk. “Do you have thoughts in your head, and you can’t figure out how to say them?” I asked. He nodded.

The machine of Mark runs on calories, the units of energy that run our cells. Our cells take calories and use them to make energy for critical functions that keep us alive: growth, reproduction, maintaining structure, and responding to environmental changes. It’s a balance of energy intake and expenditure. Once Mark descended into a cycle of not-eating-leading-to-not-wanting-to-eat, his body began trying to buy him some time to find food by preserving his core organ functions. The less food he ate, the more his body needed to look for other sources of energy. Once the human body uses up fat reserves, it moves on to finding proteins to break down to extract energy, like the proteins in muscles. Energy gets funneled to the critical organs. The brain is lower on the list than heart, lungs, kidneys. His body quickly began adapting to the circumstances it found itself in. Survival.

The person of Mark runs on love. When we first starting dating, he told me about how he grieved after his wife died. He said he’d be walking down the hallway at work and stop, not sure which way he should go. He would go to each of his kids every night and hug them and tell them he loved them. He felt like he needed to be both mother and father to his kids now. He cooked meals, packed lunches, took the kids on hikes, and did his very best despite the grief that was swallowing him whole. After a year, he decided that there could still be more to life. “I felt like I had more love to give,” he said, and so he started dating.

On Monday around lunchtime, my kids came to the hospital to visit Mark with me. Our friend Lizzy joined us. After my separation years ago, money was a concern. My kids and I took in a tenant to help cover the bills. Lizzy and her son Toby lived with us for two years. She is wise and hilarious and irreverent. We love her dearly. Lizzy was with me the night Mark consented to the brain surgery. Looking back, it seems crazy that anyone thought Mark was able to give consent, as the doctors knew the size of the tumor in his brain (we did not). I was sitting there in shock. Lizzy grabbed the consent forms and read through them out loud. “Mark, do you understand that you are giving consent for blood transfusions?” She went through all the critical elements with him one by one, making sure as best she could that he was agreeing.

Lizzy went back to visit Mark again after work on Monday. She stopped in the hospital gift shop and got him the glitziest stuffed animal she could find, which she dubbed “Love Unicorn.” She played Steely Dan for him on her phone. They sang together. He told her “I just wanna pack it in and go home.” The next day, I put Love Unicorn on the back of Mark’s wheelchair. When I came the following day, someone had moved it into Mark’s bed. Love Unicorn is our proxy, keeping watch over Mark when we aren’t there with him.

Now Mark is an an acute rehab hospital. He gets three hours of therapy every day: speech, physical therapy, and occupational therapy. The speech therapist sat with him at lunch yesterday, feeding him soup while he sat in his wheelchair, monitoring his swallowing. They are worried about him aspirating. They are teaching him techniques to swallow safely. Until Mark is able to safely and reliably take in enough calories himself, I have been taught how to feed Mark and administer medicines through the feeding tube. “You might want to wear gloves when you are using Mark’s feeding tube, because gastric juices can back up into it,” the nurse instructed me. The physical aspect of the task will get less daunting; the psychological adjustment is going to take more time.

Life broadens for us, and then narrows down to a fine point. If we’re lucky, it broadens again. It’s the lungs of life that keep expanding and contracting. Mark and I are living at the extremes. He travels along the outer limits of life. I travel beside him in this quiet and still place, and then am periodically flung into an orbit of love and care so powerful and bright I can barely look at it without tears. We keep going. This moment. This now. It’s enough. It has to be.

Difficult

Yesterday was difficult. I say that being a person who is not prone to hyperbole. Over the past seven months, I’ve listened to doctors describe Mark using words I’ve heard mostly in the context of geological sciences. It’s really my fault, because I ask a lot of questions. “How did you reattach the bone flap after you got the tumor out of his brain?” “We removed the bone flap by drilling bore holes, and we reattached it using titanium brackets at those locations.” And, “what is going on inside him that he’s bleeding from his nose and coughing out tissue-colored mucus?” “Due to the radiation and the cancer processes, his tissues are friable.”

Yesterday was difficult in a different way. I’d been at the hospital for 12 hours a day all week. My self-care had been going home to sleep at night, rather than sleeping in the pleather chair in Mark’s room. Not to boast, but I also took a shower every day. And ate food. Despite these excellent efforts to keep myself sane, I did manage to back into the garage door on Friday. And my underwear was on inside out. Still, I was proud of my little effort to keep myself going.

My brother Dale came to the hopsital at 8am so that I could sleep in. When I arrived at 10, Mark was more confused than on Friday. He’d only had one day of food after a week of nearly nothing, but still, I thought after being on continuous hydration, getting a unit of blood, and having a few IVs of magnesium, that he’d be returning to us a bit more by now. Dale arrived to Mark having pulled out his IV and refusing to let the nurse assistant clean him up.

Stubborn is in Mark’s general profile. They should have a check list at the top of the patient’s chart for baseline behaviors and attitudes. Mark giving the staff a hard time is annoying, but it’s also a sign of life. Check. He stayed stubborn all day yesterday. He didn’t want the nurses to help him back in bed. After they won that battle, I said to Mark, “What do you need?” “For the Nazis to go away.” “Can we end this part of the story where people are trying to control our lives?” Check.

Proud is also in Mark’s profile. And so it was difficult to see that Mark was in hospital briefs rather than his own undies, because Mark would never, ever allow that if he was aware of it. Uncheck. Anya, my oldest, was game for learning how to use Mark’s feeding tube. I taught her how to check his stomach for residual, flush the line, administer his dilantin, and then end with reflushing one more time. The fact that Mark allowed this without a word, silently watching TV, was completely out of character. Uncheck.

The crew of familiar oncology residents and doctors came in at 11:00. Mark would be discharged. His blood work looked okay, he was tolerating the feeding tube. I looked at them, and then at Mark, who was lying there slack-jawed, breathing loudly, staring straight ahead, not responding to anything around him. A 125 lb human machine that must be so strong despite being so weak; he just keeps going. “He is not at his baseline,” I said. I have learned the power of this word over the past months. “I don’t know how I’m going to get him to appointments, get him to the bathroom…” I’m sure I also looked like a human machine that is strong but weak, trying to keep running but reaching the fumes stage. They shuffled out.

A few minutes later, one doctor returned. They would call for a neuro oncology consult to get their opinion about what’s going on with Mark’s brain, and they called for a PT evaluation to see if Mark was safe to go home.

Part of what’s difficult for all caregivers is to have to realize and then exercise the power you have to advocate for the patient. There’s a comfort in thinking the doctors have this. You want them to be the quarterback who’s going to confidently throw the pass that wins the game. It is not a comfort to realize you really do have to be at bedside as much as possible to speak for the one who cannot. At the ER on Tuesday, I spoke to the oncologist who did not think a feeding tube was required yet. “He’s not eating anything. He’s not drinking anything. He has lost 42 pounds. He sleeps all the time. He’s exhausted.” The next morning, the oncology team decided a feeding tube would be merited. Today, the neuro oncology consult asked me what I mean when I say Mark is confused. I told the man, who was wearing a yarmulke, that Mark is referring to the nursing staff as Nazis. Not his baseline. Alma, my youngest, was there with me. We watched the doctor give Mark a rapid and thorough assessment. Memory, cognition, skeletal muscle function, vision. Mark passed some parts of the testing and failed others. “Generalized brain disfunction,” the doctor said. “Delirium, potentially caused by lack of nutrition. Could be inflammation from the radiation. The CT scan shows that there’s been no recent changes to the brain. Reimaging with MRI would not tell us anything about the impact of the radiation on the tumor. It’s too early post-treatment.” He said several thousand other words. It was hard to take it all in, even with two of use trying to hold onto the stream of information.

We waited for PT. Mark couldn’t form a clear thought. “What do you need?” I asked again. “Can we pull….can we….” he’d try. I went back to the basics: bathroom, water, blanket? Nothing. We’d both give up.

PT tried to get him out of bed. Mark was weak, unstable, confused, exhausted. He didn’t want to stand up. “Why not, Mr. Hrehocik?” “Because I’m losing control of everything,” he slurred. His mouth is bone dry. The radiation knocked out his saliva glands, and with his constant mouth-breathing, he’s hard to understand. The PT turned to me. How many stairs do we have in the house? Where is the bathroom? The list of questions was now familiar. The PT finished and said, “I’m recommending acute rehab. If we put together the need for PT, OT and speech therapy, he qualifies.” With all the fancy specialists attending to Mark, the PT had the power to say, no, this guy is not ready to go home.

The sense of relief was immediately followed by immense sadness. There is nothing Mark would rather do than go home, and I so want that for him, too. I have worked so hard to have him at home with us. I have months of training now of being on top of what he needs at all times. And now he needs more than we can give.

I gave birth to two children, Anya and Alma. I had natural childbirths, alert and aware and working hard to bring them into the world. It took many hours for each, and at the end their beautiful beings entered the room, one with a wail and one with quiet, wondering eyes. Sometimes I feel like a doula to Mark, trying to guide him back into our world. His journey is difficult, and the effort is immense. Sometimes he emerges for a few moments or a few hours, and then he retreats. We keep trying. We will keep trying.

My kids and I left the hospital last night at 6pm. One rode off on her motorcycle to her apartment. The other hopped into their own car to meet me back at the house. Tomorrow I will begin working with the hopsital to find an acute rehab placement for Mark. Another day. Difficult.

Everyone Needs a Bobby

At 6:00 am, I wake Mark up. I remind him to take his meds. I encourage him to drink something. Anything. I remind him it’s cold out, and I make sure he puts on a jacket. Sometimes I have to help him with his zipper. We wait on the couch for the familiar “Hey Marky-Mark!” from the foyer. Bobby, Mark’s caregiver, personal motivational speaker, coach and body guard, has arrived.

Mark is not a Marky-Mark. He’s very much a Mark. But Bobby has a way about him, and he has quickly become one of the most trusted people in our lives. Mark rises to his feet, taking shuffling steps to the door. Bobby keeps the car running so it’s nice and warm inside, and he has his workout playlist cued up so they can rock out to Aerosmith, AC/DC, and J. Geils on the drive. Off they go for the daily round of some combination of radiation, chemo, blood tests, fluids, and doctor appointments.

Bobby is often the best part of Mark’s day. Mark goes from catatonic to active listening when Bobby’s around. It’s hard not to. Bobby is a story-teller. He shares freely the harrows of a life once ruled by addiction and now framed by recovery. Twenty five years proud. Bobby’s stories are entertaining, educational, and often edifying. He gives talks to inmates in the county jail. He sponsors men. He’s a power lifter who works out “to keep me right in my mind.” Bobby understands the importance of showing up for the people in his life. He loves his mom, wife and son with the fierce loyalty of a good Irish Catholic. He’s covered in tattoos of Mother Mary, rosaries, and crosses. Inky Jesus peaks out from under his sweatshirt sleeve.

Back in October, Mark was lodged at a senior living facility. I’d go to work everyday, swing by and visit Mark, and then run home to take care of the family. This structure started to feel not right. Mark couldn’t read, drive, or hear very well. He was weak and tired and undergoing chemo. It was time to bring him home. My online search for caregivers began. Mark staying home alone was not an option. His baseline is stubborn, and you add in fatigue, sickness, confusion and impulsivity (brains don’t just get operated on without some payback), and I wasn’t sure what he’d do. Maybe he’d decide the dog would be better off rejoining the wild. Or that the kitchen would be warmer if all the burners were left on. Or that he could walk to the gas station down the highway to buy milk. And this was before his body decided to add in seizures. Mark keeps us on our toes.

I read the profile of a woman named Debbie. She had artsy glasses and a dog in her photo. She had experience with people with dementia. Seemed like a great fit. We arranged to meet, and I liked her right away. We worked out the details. A few days later, Debbie texted me. Her husband was laid off, and he helped her with clients sometimes. Could he cover some shifts? Mark’s life had quickly shifted from the male-dominated world of engineering to the women-dominated world of caregivers. I thought a testosterone buddy might give him a boost. Thus our time with Bobby began.

Bobby has become integral to our days. It’s not unusual for him to call or text three or four times a day, often to give me the blow by blow of a treatment, or to share the latest story of someone interesting he’s talked to at the hospital or some minor altercation he’s gotten into in defense of Mark, who he calls his brother and friend. Bobby talks to everyone in the hospital waiting room, without exception. He knows everyone’s name, what kind of cancer they have, their treatment plan, what neighborhood they’re from, and what side effects they are dealing with. He talks to them because it’s in him to get to know people, but he’s also focused on helping Mark, who he has determined to be a “King Isolator,” to not be so alone. “Meet my friend Mark. He doesn’t have an appetite, either!” he says to Maria, a tiny woman fighting lung cancer. Or, “Hey Mark, Jerry’s constipated too!” Bobby believes in the power of community to save. That belief comes from him having lived it as a literal truth.

Today, Bobby called me six times. Twice was to tell me to take care of myself. Bobby had arrived this morning to find my face covered in stress. I had been trying to get Mark to eat one bite of literally anything. “Where do you think you’re getting calories from, Mark?” I asked loudly, so he could hear me. He made some hand gesture that I couldn’t interpret. He wasn’t able to find any words to help me understand. “Your calories are coming from your body eating its muscles.” I was going for the juggular. Nothing else was working. “This is going to make you weaker and not help you heal. You need to give your body calories to help it!” Blank stare back.

“Don’t worry, sweetheart,” Bobby called me to say. He had Mark in the car, and they were on the way to the hospital to get Mark fluids. “If I have to come over this weekend to make sure he eats, I’ll do it. I don’t want you to pay me nothing for it. I tell Mark, ‘You’re my friend. Eating is your job. You gotta eat. If you can’t do it for you, do it for your family.'” I hung up and fought back the tears. From exhaustion, from fear, from sadness, and from gratefulness to not be alone in this.

One of Bobby’s calls was to tell me that while at the hospital today, he had talked to the most inspiring person he’s ever met. I had seen her, too, and wondered about her: a hunched, silver-haired woman in pink with a crooked smile, pushing a bin and doing janitorial cleanup on the oncology floor. She’s the oldest working person I’ve ever seen, and I’ve watched her enough to know that she’s not a volunteer. Bobby stopped to ask her about herself. Her name is Irene, and she’s 96 years old and sees no purpose in retiring. “What am I going to do, just sit around?” She worked two jobs until she was 80 years old. Bobby reports that he gave her a hug and told her she’s his hero. Next time, he said, he’s going to get a selfie with her.

The last couple weeks have been increasingly stressful as the radiation keeps accumulating around the target in Mark’s head, and as the chemo keeps poisoning him systemically. Bobby and I are similar in that we both see Mark as needing protection. Mark is very quiet and passive right now. He does not assert himself with doctors or nurses. Mark does not tell them how he’s feeling or what he might need. He does not ask any questions. Bobby and I confess to each other the less gracious stories of our efforts to remove ostacles for Mark. When Mark’s radiation started late last week, Bobby found a nurse and let them know this wasn’t cool. She didn’t respond well. He gently suggested that if she didn’t want to take care of Mark, that maybe she could find another job. Also last week, an appointment time change precipitated by the oncology department didn’t get communcated to the radiation department. We waited 45 minutes, then I found a nurse to ask when he’d be seen. She said, “Did they call us to tell us the time change?” “I don’t know!” I said, exasperated, “That’s not my job!” When Bobby takes Mark for IVs, he stands ready to defend. They poke Mark one time, two times, and his veins run dry. “I’m sorry, ma’m, but you’re going to need to call in someone else. I wouldn’t let you poke my dad three times and I’m not letting you poke my friend again. He’s suffering enough.” This week, I told a nurse that her casual “I consider Mark cured the day his radition treatment is finished” was cavalier and agitating. Then I told the doctor how I had responded to his nurse. It’s impossible to get through this without snapping sometimes.

Lately, I’ve been feeling more and more like I’ve been run over by a truck. I’m still on FMLA from work, but I didn’t want to lose Bobby so I’ve kept him on a few days a week. It gives me a break from the action. I also believe it’s been important to Mark’s mental health to have his personal motivational speaker, coach, and friend here. Cancer has taken a lot from our lives, but it’s also brought things we didn’t have before. Bobby is an important piece of the community that is sustaining us. “I’ll see you tomorrow, my friend,” he says, shaking Mark’s hand as he leaves. We know we will, and I’m grateful.

Free Solo

The commute home from the hospital takes about 50 minutes. I have been driving this route for many years, as it overlaps with my commute to work. Loving the ‘Burgh as I do, riding ridges, crossing bridges, and joining the slow stream of cars making their way through the tunnels is a comfort to me. My kids point out that taking the highway would be faster, but I insist on staying on city roads and calling the extra five minutes self-care.

As Mark and I drove home from the hospital last week, the rush hour traffic had us at a crawl through the tunnels. I usually don’t have the radio on when I drive with Mark. We prefer different music, and the news stations are filled with agitating stories at the moment. At all moments. So we ride in silence, which I usually don’t mind at all. On this drive, though, I found myself wanting to talk. I looked over to check if Mark was awake. He was not. Head tipped back, he was asleep, slack-jawed. Slack-jawed is Mark’s constant position now. It crept up slowly, starting in the fall as he recovered from surgery and had rounds of chemo. Now, the constant congestion that comes from a radiated nose means that he’s slack-jawed with a rhythmic gurgley-buzzing sound that makes it impossible for me to tell if he’s asleep or awake without looking at him.

I started quietly talking out loud to myself. What would we have for dinner? What were the plans for the evening? Did the kids have activities to get to? We continued to crawl through the tunnel. I rattled on. Mark continued to sleep.

To be Mark’s caregiver, I have to teeter on the edge of being in complete control while terrifyingly out of control. I have to make sure Mark takes his medications three times a day, to protect him from seizures among many other things. I can’t force Mark to eat, although I’d sure love to be able to control that since he’s now short about 40 pounds. To stay sane, I have to run this balance successfully and preferably with grace. Some days, I can tell that I’m tipping off my little ledge, and sometimes it takes someone in my support crew to tell me. When I start talking out loud to myself, it’s a pretty good indication that I’m tipping slightly father than I’d like over my sanity edge.

Year ago, when I was newly separated and raising my two teens solo, I took Alma to Dairy Queen for a treat. It was a difficult and often lonely time, made easier by finding the tiny things in life to enjoy. Alma says they knew when I got paid because I’d go from “No! We cannot stop at the bakery for a donut!” to “Let’s get ice cream!” My favorite was a vanilla-chocolate twist with chocolate jimmies. We sat eating our ice cream together, our two dogs watching us intently. “Look, Duppy!” I said enthusiastically, “There’s two flavors!” I twisted the cone in my hand back and forth in front of her little sweet face. “Vanilla…chocolate…vanilla…chocolate.” Alma stared at me. I paused. “Maybe I need more friends,” I said. We both burst out laughing. Laughing helps reset me to a better place.

Being a caregiver is an inherently isolating experience. Even as a supported caregiver — and I consider myself to be fortunate to have a lot of loving people surrounding me — I wake up alone, go to sleep alone, sit for hours everyday in the house or in the hospital (my only two locations) alone. Part of what exacerbates the sense of aloneness is that I’m actually not ever alone. I’m with Mark, who is present and absent at the same time. Between his utter exhaustion, poor hearing, and erratic cognitive processing, even when he’s awake he’s not reliably present.

I told Alma about a dream I had that I lost Mark. “Like he died?” they said. “No, like lost lost. I couldn’t find him,” I explained. It was the equivalent of the iconic forgot-to-put-on-pants anxiety dream. Something you know to do everyday and yet you screwed it up.

When I was a young adult trying to figure out the nature of love, I asked my mom for her definition of love. She paused circumspectly. She’s good at that. Finally, she said, “Love is always having to think of someone else.” This didn’t fit my idea of love, which at that point was largely shaped by watching too much General Hospital after school. As usual, I find that my mom was quite right. All day long, I track Mark’s movements. Room to room in the house, and always under the watch of a caregiver if I am not available. I know where he is and what he is doing at all times.

As a teen, I was mesmerized watching Joan Benoit cross the finish line in the 1984 Olympics. I have always been drawn to the beauty of human endeavor, especially related to exploration, adventure, and athletics. I like watching the Tour de France. I devour books about Antarctic expeditions, open water swims, ambitious rows across waters that are rather unrowable. I love the documentary film “Free Solo.” It follows the dream of rock climber Alex Honnald to climb Yosemite’s El Capitan without ropes. Just fingers and feet and a big granite wall. It’s absurd, his dream. And while ultimately Honnald has to do this thing alone, his dream has to be supported by a team of people that believe in him, and are willing to do their own absurd thing: take the risk of watching their friend lose it all pursuing something he feels like it’s in his life-blood to do.

Alone but supported. Supported but alone. One life, one epic adventure. One day at a time.

Light at the End of the Tunnel

Such a hopeful headline. I don’t really mean it. Or maybe, not in the way it seems. This cancer thing seems to be a series of tunnels. An endless series of tunnels. We’ve gone through a few already, and “great news!” we’ve made it through each. The current tunnel is radiation. Mark only has six treatments left, with two additional chemo treatments. Today, The Great Stoic is finally saying he feels lousy. This is significant, because like many Boomer men raised in working class families marked by wartime and layered with an immigration background, Mark doesn’t crack easily. This nearly seamless “I got this” facade leads him to be annoyingly cagey with doctors, like last spring when the four-hour nosebleed during which I taught him how to use a tampon as a plug became “a little nose bleed” when he told the doctor. This is a guy who—after they removed the front of his skull, dug out the bad gunk and reattached the “bone flap” as they call the piece they removed—reliably reported that he had no pain. Ever. None. Brain surgery? No problem. “I got this.”

So to hear Mark now say, as he did an hour ago, “I’m suffering,” is kind of jarring. I don’t like it. I don’t like it because I love him, and I don’t want him to be uncomfortable. I also don’t like it because I can do nothing about it. We’re at the stage where the list of things Mark could need is very short. While getting a liter of saline at the hospital today, Mark sat up from a nap. “I…I, um…I…” he looped. “What do you need, Mark?” The nurse was there. She went through the list. “Are you in pain?” “Are you hungry?” “Do you need to go to the bathroom?” “Do you want something to drink?” No to all. She looked at me. We both shrugged. Once you get through that list, there’s nothing to be done.

And so Mark and I sit. A lot. We nap. Cat naps for me, long stretches for him. We wait. Wait for the treatments to be done. Wait for scans to tell us if the cancer is gone. Wait for doctors to tell us what to do next.

Mark and I are moving through this tunnel, but it often feels like we are standing still. It is reminicent of how it felt when I rode my bike through some pretty impressive train tunnels last summer. The longest, the Paw Paw Tunnel on the C & O Canal, is over 3,100 feet. You turn on your headlight, you keep your eyes on the dot of sunlight ahead, and you ride. And ride. And ride. At some points, I got that little niggly worry in my head that I was, in fact, in a Waiting for Godot moment, some existential play where I’d never reach the end.

After the six final radiation treatments, the oncologist waits a couple months before Mark’s next CT scan. The radiation continues to damage the cancerous cells past the final radiation treatment. Only by waiting can we learn the definitive outcome of the treatment. When the crocuses are blooming, we reach the next fork-in-the-road moment, with either a path leading us towards maintaining a cancer-free status, or a path to more treatment choices.

As Tom Petty said, “The waiting is the hardest part.”

Indeed.