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On connection and caretaking

Whether or not to spring for a private room at MSK has been a debate between myself and Per since my first surgery.

The per-night cost isn’t nothing, and it adds up quickly for a 4-5 day stay.

Per thought he had an edge this time when he reminded me what we had seen during our last stay. “Don’t you remember? Families of 20 people crowded into the room and spilled out into the hallway? That could be your roommate! It could be terrible!”

Well, no private rooms were available, so I wound up in a shared room. And Per was right about it being a bad situation—but for exactly the opposite reason.

Neither Debra, nor Jackie, who followed her, seemed to have anyone. Both in their 50s/60s and clearly well into their respective cancer journeys, they checked in alone. Debra claimed to have kids and family in Long Island, but only her brother showed up for a visit. When she heard she was being discharged, there was nobody to pick her up; she was ecstatic to hear MSK would cover a car service to shuttle her 35 miles back to Long Island.

Jackie was even sadder: on intake, she catalogued her list of missing organs and then continued right on to the husband who left her last April and the two sons who called her a narcissist and had moved in with their dad.

She was in pain, physical and emotional, and her stay was marked by loud wailing and periods of praying aloud - for pain relief, for a call from her estranged husband. “Do you need the nurse, Jackie?” my husband would ask from behind the privacy screen. Sometimes she was too weak to answer, and we would call anyway. Eventually the nurses would head to her side of the room automatically when I buzzed.

She was delirious and couldn’t remember anything she had been told; she had to ask medical staff again and again what was happening and why. When they showed up to take her to get her gallbladder drained, she was shocked, asking again what it was for, would it hurt?

On the other side of the curtain, each medical professional who enters the room remarks loudly on the poster of my beautiful family, meets my husband or my sister and processes aloud how lucky I am to have them there in spite of a life in Chicago, in spite of our four kids, in spite of my sister being all the way from Milwaukee and having to fly in for just the day.

I have Per wait until Debra and Jackie are asleep to read to me from a virtual stack of well wishes from my friends and colleagues at Starcom. It feels indulgent and unkind to showcase how many people I have caring for me.

I walk four laps my first day and four more each day after that. Debra and Jackie don’t go anywhere except the bathroom; but I’m confident I would not have either without the encouragement I received.

Caretaking is one of those things where you think you know what it is—until you actually have to do it. Post-surgery, my movements are slow and painful; I’m hooked up to a plugged-in IV machine, and my muscles are still weak and semi-numb from anesthesia. If someone doesn’t get me to the bathroom fast enough, I wet my pants. I can’t reach to apply prescription cream to keep my rash—now all over my trunk—at bay. Bending down to put on socks or underwear is excruciating. I find myself calling Per into the bathroom so he can help me locate a source of blood.

Today, we go for a walk, and it turns out to be a few blocks longer than expected. Per says something, and I snap at him. “I was just trying to make conversation!” he exclaims, surprised. “I can’t MAKE conversation,” I tell him crabbily. And while that’s true—I have energy only for walking or chatting but not both—I could at least be nice about it. He smiles and leads me to a bench.

As many people who say they would gladly “do anything” to help, let’s be honest: true caretaking can only be outsourced to a small number of people in your life.

I’m lucky to have more than one. Including one really exceptional one. And hundreds more supporting me in smaller but still incredibly important ways: from cakes to flowers to meals to apartment loans and everything in between.

So this is my official thanks to all the caretakers, none of whom I appreciated as much as I did once I had the opportunity to witness cancer journeys absent that support.

A special thanks to my main caretaker, Per; and to my sister Susanna and my mom Anne, who are covering for him when he needs to work.

And to my CEO and colleagues at Starcom who continually amaze me with ongoing support that hasn’t flagged for a moment during what is shaping up to be a LONG journey.

To everyone else reading this, you cannot know how big a difference you have each made in getting me this far with my spirit intact.

I promise, when someone else needs it, to pay your love forward.

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