The Certainty of Uncertainty (Part 1)

I’m dying.

Yeah, yeah, of course, we’re all dying. But my expiration date is closing in. Based on insurance company decisions that are allowing that new $107,000(!) infusion every three weeks, it’s pretty much up to them and they’ve only granted permission for one year. “Incurable cancer” means we don’t have a fix.

Yet.

It doesn’t mean we won’t ever. The question is whether I’ll live to see it. There’s uncertainty.

This $100K treatment, Elahere, was just approved last year and became available in December. I just happen to have the correct receptor on my cancer cells to latch up with the monoclonal antibody that supposedly works like a heat-seeking missile to latch on and dispense its little cancer-killing bomb. After the first dose, my serum cancer marker was halved. But it’s done that before, and risen again.

If it works, it doesn’t mean the cancer won’t come back. It doesn’t mean there aren’t side effects (there are, and one of the biggest risks is blindness, which I’m not so keen about, and some of the other side effects aren’t a picnic either).

Moonshot

But the thing is, this option didn’t exist when I was diagnosed a bit over two years ago. Remember that “Cancer Moonshot” Biden took on during the Obama administration and that Biden re-stated in his presidency? It’s starting to pay off. It takes years to collect the data, test the processes, explore the outcomes, peer review the information, and bring it to patients. It takes a long time. It’s been almost a decade since Obama announced it. There’s uncertainty.

And there is very cool research happening out there. Researchers are closing in on treatments that could simply switch off cancer. Partially funded by the National Institutes for Health (add new uncertainty as the current administration seeks to slash NIH and National Cancer Institute projects) it basically (very basically) disrupts cell reproduction of “poison exons,” a part of the gene that acts as the kill switch in cell replication. And, in particular, it goes after the Energizer Bunny part of the gene that leads to runaway growth in aggressive cancers. Researchers found they can target messaging that tricks tumor cells into killing themselves. This was effective in multiple cancers in the lab but it needs more research (and funding) to determine dosing, delivery methods and treatment protocols before it can be tried in human patients.

This is exciting!  Will I live long enough to see it available for me? Maybe?

Uncertainty

Uncertainty leads to a couple of natural human responses. One is to catastrophize. We do this all the time. Think of cancer. We identify potential carcinogens like PFAS and glyphosate (commonly used in RoundUp) and even if the risk to most people is fairly low, the uncertainty of what that risk means, makes us fearful. We don’t want this stuff in our water, even though the effect of exposure may never lead to cancer, or may not lead to cancer for decades. We don’t know where my cancer came from. It’s novel in my family tree. Was it those nasty weirdly colored sodas I drank like a fountain as a kid? Was it riding our horses behind the crop duster? Was it pesticides in the water we drank or the food we ate or the air we breathed? Was it the baby powder we used to “feel fresh” on sweaty days? We will likely never know.

Uncertainty.

Another response is to ignore it. Human nature also makes it easy to find all kinds of ways to pretend that something bad isn’t happening or doesn’t impact “me.” One way we do this is through confirmation bias. We might seek out all the information that supports our existing beliefs so some new threat is deemed to be exaggerated or a conspiracy, or can simply be rejected as fiction. It often goes hand in hand with cognitive dissonance, when our actions run counter to our understanding. For example: people who fear cancer and worry about chemicals in their drinking water, but continue smoking.  We find ways to process uncomfortable and frankly frightening information by dismissing it, making awkward justifications or seeking out assurances that what we’re doing is okay.

I’m not talking about just pushing through and continuing on despite an issue. I’m doing that. It’s why I’m alive right now. I compartmentalize my disease and continue to write, to serve as an elected official and board member, to spend time with family and friends, go to concerts and conferences, read books, and serve the demands of my cats. But I also recognize that my lifespan may be shorter than I’d hoped and I am trying to lighten some of the burdens that will be left to my son. I can hold these two things in my head at once: that I have a life to live (with cancer) and I may die soon (from cancer).

Denialism

There is uncertainty. But it isn’t denial. The problem with that second natural human response is it can lead to science denialism. And when that science denial rises to the level of public policy, it’s dangerous. Researchers find that failing to respond to denialism when it occurs can do “more harm than good. … [T]he negative effect of science denial on audiences was greater when there was no science advocate to rebut the claims. When a science advocate rebutted denialist arguments, either by presenting scientific facts or by exposing the logical flaws of the arguments, the effects of denialism were significantly reduced, even among audiences whose beliefs or ideologies are threatened by the science advocate.”

But, instead of rebutting, we often platform deniers. Thus, we face cuts to the very systems through the NIH and NCI funding cancer research and treatment, and the vaccines that keep the immune compromised from dying from seasonal flu, measles and endemic COVID, and that funds research intended to solve some of the very chronic diseases our Health and Human Services Secretary complains are running rampant in this country.

It’s about uncertainty. We can talk about the preponderance of evidence. We can talk about risk. We can talk about the part where millions of lives have been saved or diseases eradicated or, or, or … but science is hard. And when there are agendas, the uncertainty in science plays into the hands of those who are fearful, those who have cognitive dissonance and seek confirmation bias, those who don’t want to change because change is hard, those who don’t want to pay for it, those who are afraid and who by denying the existence of the bad thing, can put it out of their heads. And, of course, those who profit off our fear of change.

But inaction can kill us

I sat on my deck last week and noted the jaundiced color of the sun’s reflection on the siding. It wasn’t a golden glow. It was a sickly yellow. We just had a full day of rain to break the choking dome of heat and humidity. It should have been a crystal day. But the sky is jaundiced and smoke obscures the fine details of the tree line. Canada has sent us its forests, duty free, on a northwest wind. It’s not the first time. It’s not even the first time in the last month.

We can’t ignore it. A month ago, Kerr County Texas faced apocalyptic flooding, with New Mexico facing destructive and deadly floods several times since then as rainfall rushed from its wildfire-ravaged hills. We’re still cleaning up from Helene, from the Palisades fire, from the fires and floods, tornadoes and hurricanes before that. We’re watching communities sink into the ocean, or the melting tundra, and killer heat waves around the world as we set a new “record hottest year,” year after year.

But now science denialism in the White House claims that climate change is a hoax. It has killed initiative after initiative to mitigate climate change impacts or reduce the pollutants that contribute to it and wiped climate change from public-facing websites. The latest effort would remove the Environmental Protection Agency’s authorization to regulate gases like carbon dioxide and methane under the Clean Air Act via the “endangerment finding” and how these were deemed to pose a threat to the public health and welfare. The EPA decision came the same day as the Department of Energy released a 150-page report written by five skeptics that dismisses the impacts of climate change.

Researchers have decried the DOE report as unscientific and based on cherry-picked data.

Washington Post reporting quotes climate scientist Zeke Hausfather, whose work was cited in the DOE report, saying “They cherry pick data points that suit their narratives and exclude the vast majority of the scientific literature that does not. … This gives a terribly skewed view of the underlying climate science.”

The EPA secretary’s rationale was to eliminate “uncertainty for automakers and American consumers.” Despite thousands of studies, and thousands of scientists working on the issues of a changing climate, and the thousands who have contributed to the international climate studies, five skeptics provide the justification for the agency to change its efforts to protect the public. This is intended to remove the uncertainty.

Whose uncertainty are we talking about here? For insurance companies, the uncertainty is clear. They won’t even insure parts of the country.

In our history, great changes have come through breakthrough moments, like the publishing of Rachel Carson’s Silent Spring, or an oil spill that led to the environmental movement and even the EPA itself.

What will be our mark? Our legacy? What will we do in the face of this crisis that Peter Friederici calls a “climate breakdown”?

The uncertainty is fast leaving us as one natural disaster follows on the heels of another. What can we even do? What can I, one person, do to make some mark in the world before I die?

What will you do?

I have more to offer on this. Watch for Part 2, coming soon.

Cover photo: Sunset. Photo by Meg Turville-Heitz

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