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Marv as Grandpa Seven Years Ago

I feel alone as the spouse of someone living with Stage IV small cell lung cancer who has chosen not to seek treatment. I’ve found no one in the exact same boat of uncertainty, so I have no one with whom to share my anxiety of when our “untreated” situation will change and what that change will look like.

Instead, I’ve submerged myself in the online places where persons live who are undergoing treatment for this same cancer. I’ve read countless stories about treatments, side effects, deteriorations, and deaths, as well as remissions, though seemingly temporary, and hope. And I’ve felt surrounded in those stories by a huge dose of love and support and encouragement for each other’s situations.

I remember when I required my nursing students to attend a support group of their choice during their mental health nursing practicum. I went to a few open meetings myself and remember feeling like I wanted to have my own “issue,” because I loved the unconditional support I felt in those meetings among the participants and wanted to be able to attend in a capacity other than as “the nursing students’ teacher.”

So, I think about What if? What if I had a support group with spouses in my exact situation? What would that look like?

For one thing, I’d want lengthy conversations about why their spouses chose not to seek treatment and how their introduction into the world of cancer progressed. How did they find out they had cancer? What were their symptoms? Or was their lung cancer discovered by default like my husbands was? Then, what doctors have they seen? Internist as gatekeeper? Pulmonologist for definitive diagnosis?  Surgeon for biopsy? Oncologist to hear options? And who else along the way?

And what did they hear from each one. Did they hear “a few weeks to a few months,” “very aggressive,” or “you must start treatment right away”?

Or did those doctors start out with, “What are your priorities? What’s most important to you now?”

In my informal conversations with folks who have lived through other types of cancers, I ask how their doctor visits went. To a person, they went like ours. All health care workers, from receptionists to nurses to doctors, have assumed we were there to seek treatment. Thus a “before” photo was taken when I wanted to ask “before what?” Schedules for chemo were laid out before Marv said as nicely as he could to either hold their spiel or make it quick because he wasn’t going to take treatment anyway.

No one’s first question was: “What are your priorities? What’s most important to you now?”

In my reading, I find this approach is called the medicalization of illness in later life. We older people are not allowed to die naturally because, historically, doctors are taught to treat and cure, so the health care system revolves around that philosophy. And most of us still don’t question our doctors and follow, rather blindly, whatever they say we must do.

I’d heard about Atul Gawande’s Being Mortal before Marv got cancer but was happy someone reminded me of it (a whopper of God’s grace) and I was able to finish it the night before we met with the oncologist, the last doctor we saw in our medical parade.

Gawande argues that doctors could use a different approach. He paraphrases Susan Block, a palliative care specialist: “There is no single way to take people with terminal illness through the process, but there are some rules…. You sit down. You make time. You’re not determining if they want treatment X versus treatment Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them their best chance of achieving it. The process requires as much listening as talking. If you are talking more than half the time, you’re talking too much.” (p. 182)

“You’re trying to learn what’s most important to them…”

We did not feel that concern or hear that question in our medical parade, except from Marv’s internist on our first visit. He asked what our winter plans were. We said we were traveling to Arizona, and he said, “Go ahead. Do what you want to do.” He expedited biopsy of an external nodule, so it could be done before our impending trip.

After that we did not hear that concern or encouragement again until our first hospice visit. Now every week, she asks our plans, commends our activities, and makes sure we feel equipped to do whatever we want to do.

It’s very comforting to have her on our page. And I can only hope whenever people face a cancer diagnosis, they do not immediately panic, but instead seek out a doctor who asks, first, about their priorities.  Someone who asks, “What is most important to you?” before the receptionist takes their picture or the nurse presents a schedule.

And, now, would you believe just a few hours ago, I found a person online whose loved one was just diagnosed with Stage IV small cell lung cancer and they’ve found out it is too advanced for any treatment and have been referred to hospice. I was able to reach out in support of hospice as a comforting measure and with an expression of prayer, and I’ve heard back.

I believe I’ve found a “support group” after all. And a niche where I can support others with small cell lung cancer when treatment is not possible and dying naturally becomes their unchosen way of life.

And just when I was wondering when God’s Grace would step in on my “feel alone” concern…