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.