Cancer Kids Suffering

Upside Down

This weekend, I spent time with some old friends. Sitting by a lake, bundled in layers of blankets and sweaters – with football on the TV beside us – we played a game. The game involved simply asking situational questions.

“If you could build a house anywhere in the world,” I asked, “where would it be, and what type of house would you build?”

Later, my friend asked, “What is the best piece of advice that you’ve given; and what is the best piece of advice that you’ve received?”

As I thought, I realized that I have many pieces of advice that I treasure. But I struggled to think of one that I’ve given. I finally landed on something.

“I don’t know if it’s advice,” I said. “But I’m proud of how I handled Jeff’s death with our kids. I’m proud of how I talked to them about it. So, I suppose that’s indirect advice for them.”

Sometimes, it seems to me, that – until Jeff was diagnosed with cancer – I had a few things upside down.

Before Jeff was diagnosed, if you had asked me a situational question – “How would you talk to your kids if your spouse died?” – I think I would’ve tried to protect them. Isn’t that what a parent is supposed to do?

But now I realize, that’s upside down.

I’m not sure when I realized it, or maybe I even read it somewhere, but here’s the thing about kids: they force your hand. An adult cannot possibly talk to a child about death, or about dying, until the adult as dealt with it themselves. Children force you to deal with things that are uncomfortable, exhausting, and sometimes, socially inappropriate. Not because they mean to, but because children are desperately trying to learn about and make sense of the world, and they are going to ask millions of questions from the adults they trust the most.

Somewhere in the middle of figuring out when and how our kids should see Jeff’s body in his casket, I had a realization. To keep the kids home from his funeral; to avoid talking to them about their father’s death; to speak to them in euphemisms and half-truths: that wasn’t going to protect the kids. I would be doing that to protect myself.

I don’t pretend to know where things cross the line… where they move from informing and supporting a child to putting their innocence at risk. But I can say that I’ve erred on the side of giving Jake and Kate the benefit of the doubt that they can handle it. They ask questions; I’m lucky. But for the kids who don’t ask… they’re still wondering about it. They want to know. And I would bet money that their little heads and hearts are just hoping that an adult talks to them about it.

That’s not all I got upside down.

I was recently talking with a friend. We were talking about how to handle a cancer diagnosis: what do you do when the patient – the person you love and admire – isn’t handling the situation how you want them to? What if they’re being too aggressive, and the cancer is consuming them? What if they’re being too passive, and the treatment is delayed?

My thought is this: cancer isn’t to be beaten. Cancer is to be accepted.

I’m not saying that I am going to lay down and die if I get a cancer diagnosis. But what if I accepted cancer as a new part of my life? What if, instead of adopting this adversarial and exhausting approach to something that now lives inside my body, what if I accepted it? When Jeff was going through treatment, one of my devotionals suggested that we ditch the warrior lexicon when it comes to cancer. It’s not a ‘battle,’ she suggested. Cancer is a dance — and you’re not the one leading.

When Jeff was diagnosed, someone texted me, “Cancer doesn’t know who it just took on!”

The person meant it – of course – as a rallying cry. But it made me feel tired, defeated, and alone. Accepting things – as crazy, harrowing, and exhausting as they were – was actually less defeating than thinking of cancer as a battle. Because I basically knew Jeff would lose the battle with cancer. What I needed to think about was preserving what cancer could take from me, from our family. Cancer could take our joy, if we let it. It could take our faith, if we let it. Cancer could take our love, hope, and all the goodness in the world and suck it up into an abyss, if we let it.

One of my devotionals also said this: either way, with a cancer diagnosis, the person wins. God will either take the cancer out of the person, or the person out of the cancer.

Which leads me to something else that I’ve had upside down.

I believe in, and support, funding cancer research. There are wonderful researchers and doctors doing wonderful things that will save and prolong people’s lives. My own daughter will receive the Gardasil vaccine when she’s old enough. My own aunt received life-saving surgery, chemotherapy, and radiation treatment last year, and now has no evidence of disease. Research saves lives.

But what if we directed a similar amount of energy to talking about death? Preparing people to die? I don’t know how to talk about death without sounding callous or monstrous, so I’ll just say it: the outcome will still be the same. We will all die. Accepting it is maybe the best medicine for living.

When Jeff died, I bought every Elisabeth Kubler-Ross book I could find on Amazon. Because the only two deaths I’ve seen – my grandma’s and Jeff’s – have been on hospice care, I find it hard to believe that there was a period of time when hospice wasn’t a ‘thing.’ I find it hard to believe that Elisabeth Kuber-Ross’s work was considered ground-breaking and controversial by some people. But maybe I understand that more now — I feel so much more comfortable talking about death. And I want to talk about it. But there’s not much room for it in everyday conversation. It’s deep. It’s heavy. And most people haven’t or don’t want to think about it.

I’ve been thinking a lot about this: how do we change the conversation around death and dying? How do we prepare to die? We spend most of our lives preparing to live. But just as we learn about ourselves through comparison — we define who we are by learning who we are not – how can we possibly expect to understand life without accepting that we will die?

But how? How to do this? And arguably just as important, how to do this without seeming like a downer, at best, and like a monster, at worst?

The closest I’ve come to some kind of answer is something I read in Being Mortal by Atul Gawande. He mentions the case of LaCrosse, Wisconsin.

“Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there’s no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year,” Gawande explains.

He goes on, “To understand LaCrosse… you [have] to go back to 1991, when local medical leaders headed a systematic campaign to get medical people and patients to discuss end-of-life wishes. Within a few years, it became routine for all patients admitted to a hospital, nursing home, or assisted living facility to sit down with someone experienced in these conversations and complete a multiple-choice form that boiled down to four crucial questions.” The form asked about four situations, and how the patient would want doctors to handle them, at this point in their life:

  1. Do you want to be resuscitated if your heart stops?
  2. Do you want aggressive treatments such as intubation and mechanical ventilation?
  3. Do you want antibiotics?
  4. Do you want tube or intravenous feeding if you can’t eat on your own?

As patients’ lives change – and their reasons for being in the hospital change – so do their responses. A new mother admitted to the hospital for delivery, for example, would absolutely say ‘yes’ to all of those questions. But as lives shape-shift, the answers start to become more gray. “The discussion, not the list, was what mattered most,” Gawande notes. “Discussion had brought LaCrosse’s end-of-life costs down to half the national average. It was that simple — and that complicated.”

And, for my part, there was one little phrase that resonated: someone experienced in these conversations.

Setting money aside for as second, let’s talk about ‘these conversations.’ Nobody talked to Jeff about these things until he was diagnosed with cancer. And that was exactly not the time to begin that conversation. And that conversation began… on a piece of paper. The well-meaning hospital where Jeff was treated handed us a treatment binder, to organize thoughts and questions. One section was about end-of-life wishes. But when death looms and treatments exhaust, every interaction with a doctor or nurse seems of monumental importance. Every raised eyebrow, every sigh, every voice inflection… I read into everything. Did that sigh mean that the treatment wasn’t working? Did that change in voice mean that things were going better than we thought? In the absence of a direct conversation with a human, I filled in with the details I had, and I rounded up for hope. That well-meaning binder was helpful, but it was nothing compared to a human conversation.

What if Jeff had thought of these questions earlier? Would we have gone to MD Anderson? Or would Jeff have accepted his October PET scan as a grave harbinger, and agreed to come home? Would we, instead, have spent that week at home, with our kids? Would he have been in less pain, accepting more palliative care instead of treatment? Would he have been happier?

And now let’s talk about the money. It seems callous to talk about the cost of medical care when we’re talking about people’s lives. It’s the last thing I wanted to think about last year. But that’s also a luxury I had — when we went to MD Anderson, we just did it. People helped us pay for it. We had the resources. Money – we thought – would be a non-issue.

But let me take a horrifically objective stance here.

I’ve seen the total amount billed for Jeff’s medical care for 2018. It could purchase a luxury home on a beautiful lake. Gawande notes in his book that “in the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life.” Jeff wasn’t on medicare, but the point remains. Am I saying that it would’ve been cheaper for Jeff to die sooner, if he had not made it to December? Maybe. Or, even if he did make it to December, he surely would’ve had fewer scans and emergency department visits. He would’ve had fewer paracentesis procedures and bile bag swaps. So yeah, I think it’s almost fact that he would’ve had less to bill insurance.

But here’s what I’m WAYYY more interested in: would he have been happier? If he had thought about these things for years, if he had been asked and asked himself the questions that Gawande suggests, would Jeff have been able to arrive at acceptance earlier? And if he had, what would those months have been like? I’ll never know. But I wonder.

As it was, I am at peace that Jeff died how he needed to. He needed to fight. He needed to exhaust every option. When he went on hospice care, and he told me, “I’m relieved, Jess,” and, “I just want to feel better,” he was able to say those things because he called the shots… and he had family, friends, and a network who supported the shots he called.

Thinking about medical insurance and hospice… thinking about death and the fact that my children’s father has died… it makes me feel like I am doing a handstand, looking at the world upside-down, with the blood rushing to my head. Everything looks familiar, but nothing makes sense.

I don’t pretend to know how to fix all of this, or even that it needs fixing. But I feel driven by some internal motor that won’t shut off, and I’m not really in charge anymore. I don’t know what all of this means, but I do know this: that – just like most meaningful things in life – it all starts with a conversation. Not with insurance companies. Not with doctors or medical professionals. Not even with employers or politicians. The conversation starts on the edge of a bed at bedtime, when one of my kids asks me about death… and I answer honestly.

2 comments on “Upside Down

  1. Carol Marshall

    Jess,
    You are the most “right side up” person I know. Your priorities are spot on.

    Like

  2. Mike Griffin

    Thank you Jess. You know, I was literally just explaining to friends this weekend that Catherine has never liked the whole “warrior” motif. Maybe it helps others, but for sure acceptance – in the fullest sense of that word – has been the beautiful core of her response. Not easy, full of frustration, but more reflective of our true condition as human, fragile, mortal. Thanks

    Like

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