Measure What Matters

At the funeral, in the foyer of the church, amidst the sea of grieving strangers, herding their way into the receiving line, he said to me, “I wish my dad would hug me. I’m not sure he’s even said ‘I love you.’”

Don’t be misled; the funeral isn’t for his old man. Time remains to reconcile the regrets. To offer a hug and say, “I love you.”

I recall shoe gazing and nodding in furrowed-brow and puzzled empathy.

“I hug my kids,” I thought, two of them then, three now, “all the damned time.” Later that same day I was blowing raspberries on my middle’s exposed belly while those earlier words—“wish he’d hug me,” paced a groove in my mind. My boys likely wish I hugged a little less. I suspect their aversion will increase, with their ages, culminating with outright avoidance come middle school. The baby, though, “Little Adam,” he still goes for three big squeezes and a smooch at bedtime.

This is the stuff funerals are for, prioritizing, reflecting, like an off-cycle New Year’s resolution. We die so that the living can figure out what they’re supposed to be doing. I suppose this is why it’s uncomfortable to attend funerals.

A financial advisor, an acquaintance, posted to Facebook, “What counts as rich? Not rich with friends or family, but assets, holdings, a salary. I want a number,” the post concluded (my emphasis). Comments followed (though, not mine). The only sense in which I am rich is the former.

The problem, I suppose, with measuring wealth in relationships, is presupposed by the financial advisor: it is not quantitatively evaluable. What we measure is what matters. A quantity of relationships is not the desired end, otherwise Facebook would be good for us, instead, it is the quality we ought to measure, yet no quality scale exists for relationships.

It is evaluation that resonates with me. As a person living with an advanced illness, measurement and evaluation are central to my life. Occupational and physical therapists evaluate strength, balance, coordination, and range of motion, radiologists employ imaging protocols to measure changes in my brain that are indicative of disease response to treatment or progression, my neuro-oncologist evaluates the physical symptoms of disease, looking to maximize therapeutic efficacy and mitigate side effects. Ultimately my wife and I revise the probability of my continued survival given a set of variables informed by many of these inputs I described. In a technical sense, this is conditional probability. In real life, it is nail biting. Each time I cannot remember a name, forget a word, lose my balance, complain of light-headedness, or trip on the turned-up corner of the threshold rug is cause to scrutinize the event. Will we look back on this moment, as the first sign of my cognitive decline?

Folks like to say things like the following to comfort me—though I suspect it is more to comfort them, in the face of my seemingly random and devastating diagnosis, “I could get hit by a bus tomorrow. None of us know when we will die.”

Fair, but unless each time you cross the street you think to yourself, “Will this be the time that I am struck dead by a bus?” then you are drawing a false equivalency between the uncertain timelines for our passing. This sort of thinking, the sort of thinking where every misstep raises a flag, produces anxiety, and if you do not think so, here is a recent article published in STAT News (link) that reports one in five cancer patients develop PTSD within six months of their diagnosis.

The quantity and quality distinction is especially salient in these cases. Quantity of life is the lesser half of the diagnosis-prognosis relationship, that is, quantity of life, how long you live, is the deadbeat who “married up” to quality, yet quantity gets all the attention. As the financial advisor crudely stated in the Facebook post, “I want a number!”

Our chief metric for drug approval and the measurement the newly diagnosed latch onto is overall median survival. Indeed, I have appealed to this number several times to convey the seriousness of my diagnosis. Mainly to fire back at the “hit by a bus” crowd. I’ll think, “Sure, but is your bus coming in 15-18 months, with little braking and steering innovation in 20 years?”

I wonder lately, why the hit-by-a-bus crowd has been bothering me so much, and that thought is closely related to my reticence to openly share the (relatively) good news of a stable MRI scan. You’d have thought I would like to hit all the social media channels with news of a stable scan—stable meaning the areas of enhancement on the MRI images, indicative of tumor, are “stable,” have not progressed, when contrasted with the previous scan, eight weeks prior. If you follow me on social media, you recall I paraphrased the impression of my recent radiology report with the following words, “You aren’t better, you just aren’t worse.”

The truth of it is this: if I celebrate my good scans, if I hint that I am outliving the survival curve, then a culture that is steeped in quantity of life is placated, paying little mind to quality. We are a culture of whatever-it-takes life saving measures, poor advanced care planning, and doctors who view death as failure, thereby obstructing the end of life care that is of equal import to beginning of life care. I am a proponent of family planning, replete with a commitment to pro-choice policies, so too am I proponent of end of life planning, which includes thoughtful analysis, design, and implementation of policies, procedures, and protocols that prize patient and family choices in the end of life decision making process.

I am wealthy in my relationships. My kids won’t wonder about hugs. I am not rich in the numbers, but the immeasurable, the intangible, the quality of my life is on my mind. And my retort to the financial advisors: quality is priceless.

4 thoughts on “Measure What Matters

  1. Whilst we are unknown to each other Adam, I am deeply thankful you are walking this path with me. Thank you for your hard work of experience and ability of meaningful articulation.

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  2. “We die so that the living can figure out what they’re supposed to be doing.” Wow, awesomely said. As was your whole point. I know my husband, diagnosed with GBM mid-July, wholeheartedly agrees!!! QUALITY of Life. Yes!!! It’s amazing and weird to run into so many people who will see a photo of my husband and say how good he looks. Like, There! There’s your proof that he’s going to be just fine! He’s going to get better and beat this! And that stable MRI – everything’s going to be all right! Maybe they’re just trying to be encouraging, even though they know it’s inevitably otherwise? But then by the cheap cheer, they are not truly sharing the space with you, they can’t speak your language, cannot just be there with you in your fear, in your difficulties and struggles, in your existence. And they mean well I know, but I get all these “read this,” “try this,” “here’s a new cure” kinds of stuff… All to get the numbers up, to get maybe that extra 1-3 months…?? No, not for us. Thank you, but no. Make the most of what you’ve got left. Make it real. There’s no time left for mere pleasantries or mere anything. “Fighting” to suffer more for longer does not sound very appealing…

    And your kids have the biggest gift you could give them – internal knowledge of love, value, acceptance. They will keep you and your gift with them forever.

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    1. Thank you for these insightful words: “not truly sharing the space with you,” that resonates with me! I am so happy we can share this virtual space together. Please accept my very best thoughts to you and to your husband.

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