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.

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.

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.