karen's altar on a packing crate

The Diagnosis and the Present Moment

Karen outside at picnic table
Karen, October 2019

Karen, one of my best friends, was diagnosed with Stage IV ovarian cancer in September 2019. At the time, she was working as a consultant in a small town in Utah. In early March 2020, before COVID took over the world, we talked at her house in New Hampshire about how getting a difficult diagnosis has changed the way she views the present moment.

Martha Henry: How did you end up in a hospital in Salt Lake City on Labor Day weekend?

Karen: I’d been experiencing some physical discomfort for several months and then had a bowel blockage. Joe, my husband, took me to the emergency room on a Saturday night.

How did you know you had a bowel blockage?

I didn’t until they told me. It was very different from food poisoning. The vomit had different smells.

The emergency room doctor gave me a CT scan. They pumped my stomach and got me stabilized. The doctor was looking at the scans with a flummoxed face. We heard him say something about, There’s more going on here than just the bowel blockage. He was consulting with doctors from Salt Lake who said, Get her up here.

They put me in an ambulance. I had nothing with me. We didn’t pack a bag. It was the middle of the night, driving miles and miles and miles. We didn’t know what was happening. Everything was surreal,  like we knew we were in an alternate universe.

That’s how I landed in the hospital.

When did you hear your diagnosis?

They gave us a really nice room. This was Labor Day, 3:30 in the morning. Joe was with me. A resident came in and said, Well, I’ll let you guys get some sleep. You must be really tired.

We settled in, but we weren’t sleeping. About 15 or 20 minutes later, she came back and said, Well, I’m not sleeping and probably you aren’t either, so let’s just talk. You must be in a state of shock.

We said, What do you mean?

She said, Well, because of the ovarian cancer. She thought we had heard the suspected diagnosis.

What was that moment like? Did your brain stop?

We were trying to put all the pieces together.

Obviously, I knew it wasn’t good when we had to go to the emergency room. I was in a depleted, rag-doll state-of-being, but there was something comforting about being in a hospital where amazing things can be done to keep you alive.

There was a light-bulb moment: Oh, this is what’s been going on. The night before, I was complaining to Joe. We were about to leave for a trip and I said, I feel really bloated. I don’t feel like myself. What if I have cancer?

It was the first time I’ve ever said that. Hearing the diagnosis, in some ways, made sense because things had not been making sense. When the resident explained it, there was almost relief, even as the shock was setting in. We talked until 5:00 in the morning.

When the doctor left the room, that’s when all the emotion kind of flowed out. We cried for hours. I was glad that my husband was there because with another person, you’re able to perceive things and grapple with them differently than if you’re alone. I think if I were alone, it might not have sunk in.

Later we met with a surgeon who understood my situation. It was a holiday weekend, but I got a biopsy and tests done. The biopsy took a few days to confirm what they thought. Each day was a different level of acceptance and sadness.

We made the decision to fly home when I was stable. We had to start telling people. It was tough to tell the kids, particularly my youngest, who had just left for school.

Circumstances drive you into the present moment. Everything else falls away and you focus on what you need to do.

It’s been six months since you learned you have Stage IV ovarian cancer. Does the sense of urgency you had when you received the diagnosis change over time?

The initial shock—for sure. We somehow got home. Because the blockage could come back at any time, and you can die from a blockage, it was important for me to start chemo right away. The situation was somewhat urgent.

The thing that has probably shifted from day one, if you call that the day that we learned about the diagnosis, is that what matters becomes very clear. What matters is relationships: to self,  to others, to your surroundings—that could be the dog, that could be the plant, that could be the sun, that could be a grounding sense that I associate with life, even though death could be around the corner.

The question I continue to ask myself with varying responses is Am I living? Even though my doctor recently said the diagnosis is not a good one, I know that my ability to survive this disease and this treatment—because the treatment also knocks you out—is related to my connection to life and living. I’m focused on doing things that support that.

Eating is important, so is drinking water and going for walks. Being with people is important. Other things are just less important. It’s not like I’m not going to empty the dishwasher, but how I spend my energy is different.

When you’re in a situation like the one you’re in, there’s a preciousness to every day. Do you worry that, as the weeks go by, that sense of preciousness will fade?

No, because even though the diagnosis might not be good and my life expectancy may have changed significantly, I haven’t felt close to death. There seems to be an insistence to pay attention, even as time passes.

It’s still very much a roller coaster, probably influenced by the chemo— you know, it’s poison. This time after the chemo I was just so itchy. I had a full body reaction. You can’t be appreciating life when you’re completely itchy. I have as many good days as bad days.

Do you feel like your relationship to the present moment has changed?

It’s subtle. We’re about to turn 60. When people die in their eighties, it’s like, Oh, they’ve lived a good long life. You don’t say that about someone in their sixties, but it begins to be an acceptable age in which to die. It’s within the realm.

Once I crawl out of the chemo bunker, it will be interesting to see how my life actually changes. What will I do that’s different? I don’t want to do certain things anymore; it feels like there’s permission to let things go.

It’s easier to come both into the moment, but also out of the moment. Does that make sense? Like you said, it’s not constant, but it’s informing. The message is never far away. Sometimes at night, I wake up feeling either perfectly healthy or completely crazy and sick.

Sometimes I have to convince myself to participate in the day, especially if I don’t feel well from the chemo. I might just not want to do today, even though it’s precious.

When people get a bad diagnosis, others see them as fragile and place them in a different category. Right now, you are more fragile. What comes with that?

As they say, You’re now in a club you didn’t want to belong to. I don’t want to be treated differently, but to your point, you are different. You look different, you act different. That took a while to accept. People are going to treat you differently. They’re going to want to help. I’m learning to ask for and receive help.

That’s how we show our love.

And that feels really good when you can accept it, even though accepting it means you accept your diagnosis. Sometimes you want to escape the present as much as you want to be in the present. There are lots of different things going on.

You got a diagnosis, then rounds of chemo, then surgery, then more chemo. You have tests and scans every couple of weeks. You’re waiting for these indicators to give you some sense of how you’re doing. What’s that like?

To your point, you can never know. Joe and I don’t want to go through all this and then I die in five years, but that could happen. That is the reality for 75% of ovarian cancer patients.

My life right now is living chemo to chemo. For a while, I thought, Oh, I have to somehow overcome this and get back to normal life. But you can’t when you’re on chemo.

I try to focus on what my day is today. What are the things that I’m hoping and dreaming for? When I do some of my meditations, part of the exercise is visualizing your future in a well state. That’s helpful. There have been times when I ask, Am I in denial about this?  I can’t really see myself in a sick or dying state. I just don’t see that.