Second Thoughts About Hope | Feb 2 2023

I. Checking In From BoringLand

This past week and a half, lung cancer was my full-time job. Eye check, CT scans, a visit with Dr. Oncology, a quick EKG. And the results? Good, good, good, good. More specifically,

• Eye scan:  One night in Oahu, I was driving us home when, suddenly, it was as if I couldn’t see street signs, maybe even some of the big highway signs. After considering all ethical obligations, I announced, “Hey you guys, you know, I can’t really see where we’re going, so if I miss a turn, you should speak up.” Nobody got too excited, which was good, but, knowing that osimertinib can affect the eyes, I immediately made an ophthalmology appointment. (An “immediate” appointment came with a four week wait.) I learned that my vision has sort of degraded from 20/15 to 20/25, and that there’s signs of increased cataract action, just as Dr. Radiology predicted, but nothing to be addressed yet.
• CT scans: I’m still not spontaneously glowing in the dark, which is a little disappointing, but probably for the best in the long run. The outrage of the appointment: I had to ask for a warm blanket as they were getting ready to slide me in for the scan. “Your service is getting sloppy around here,” I said. They grinned. Within a few hours, the report arrived. It was briefer than usual, but the American D.O. read it, and he is stingy with language. A sweet word stared up from a few sentences: stable.
• Dr. Oncology: Bloodwork, vitals, and a new (to me) nursing assistant who has a miniature dachshund puppy. His husband bought the sweet doggie a Gucci collar for $375. “She gets Gucci, but not me,” he sniffed happily. Then a happy reunion with Dr. Oncology. She loves news of travel, and lately, of my indoor cycling adventures. This time I mentioned I’ve been doing some reading about LMD– leptomeningeal disease. It’s horrible, with poor prognosis, and nothing much to be done for it, she confirmed, “maybe some chemo,” she said with a shrug. And cognitive decline that is different for everyone, she added. I told her that should I end up with it, I wouldn’t be pursuing treatment. She kept her eyes on the computer screen and nodded. The next goal: a stable result in two months and then I graduate to visits every 3 months.
• Heart: Osimertinib can mess with heart rhythms; my EKG continues to be normal. Yay!

II. Hope-notes From a New Book

As you know, I’ve been wandering along the affirmations-meditation path for a while now. I’ve wandered right into The Five Invitations: Discovering What Death Can Teach Us About Living Fully by Frank Ostaseski.  Perhaps a book with death in the title does not call to you. Let me assure you, this book is much more about living than dying. That’s unlike a recent book I tossed called How to Be Sick. Both are Buddhist-inspired, and each has made a profound difference for different readers. However, I prefer the one with death in the title, which is actually centered in living well, while the other one is written from the space of being ill.

Why hope again? Thinking about hope is part of a full package with Ostaseski. Hope doesn’t come sauntering into this world alone, it’s part and parcel of being alive. Being stable gives me the chance to broaden the ways I think about being.

Here are some of his thoughts that grabbed me right away.

Hope is a subtle, sometimes unconscious attitude of heart and mind that is an essential resource in this human life. It is the ingredient that supplies the motivation for us to get up in the morning and look forward to the possibilities of a new day…. Desmond Tutu, South Africa’s moral conscience and the outspoken critic of apartheid, once said, “Hope is being able to see that there is light despite all of the darkness” (p.44)

Experts differ on whether hope is an emotion, a belief, a conscious choice, or all three. Václav Havel, the philosopher and first president of the Czech Republic, suggested that hope is “an orientation of the spirit.” I think of hope as an innate quality of being, an open, active trust in life that refuses to quit (p.44).

Hope is an optimizing force that moves us and all of life toward harmony. It doesn’t arrive from outside; rather it is an abiding state of being, a hidden wellspring within us (p.45).

Hope that is active has an imaginative daring to it, which helps us to realize our unity with all life and find the resourcefulness required to act on its behalf. We can sense the lightness, the buoyancy of this kind of hope, the enthusiasm and positivity it engenders. It energizes us to engage in activities that we imagine will enrich our future. This version of hope is a basic human need (p.45).

“[A]n abiding state of being;” “orientation of the spirit;” “open, active trust in life”. Trust in a future that engages us to act to build that future. (I guess that what that looks like today is, booking a trip to Italy and buying trip insurance.)

Reflecting on Ostaseski’s words makes me feel stronger. But he doesn’t get all airy-fairy about hope. He’s very clear that, “[t]o discern the real value of hope, we must draw a line between hope and expectation” (p.44). This is some of the hard work of hoping.

Here are some of his thoughts:

Ordinary hope disguised as expectation is fixated on a specific outcome. This hope gets conflated with the desire for a certain future result. It becomes object-focused. It takes us outside of ourselves. The quandary is that when the outcome isn’t achieved, the object isn’t grasped, then our hopes are dashed (p.45).

Attaching our happiness to a specific outcome causes us all sorts of suffering. To manage that distress, we attempt to control everything that is happening around us (p.45).

…with compassionate support, this hope can shift. It stops being about managing the symptoms we did not choose and cannot avoid, and instead turns toward discovering the value in living fully given our current conditions. Often it transforms into what I have come to call mature hope, a hope that takes us inside ourselves and toward finding the good in the experience (p.47).

Mature hope requires both a clear intention and a simultaneous letting go. This hope is not dependent upon outcome. In fact, hope is tied to uncertainty because we never know what is going to happen next. The hope is in the potential for our awakened response, not in things turning out a particular way. It is an orientation of the heart, grounded in value and trust in our basic human goodness, not in what we might achieve. That fundamental trust guides our actions and allows us to cooperate with others and to persevere, without attachment to a specific result. In illness, mature hope helps us come to a place of wholeness, even if a cure is unavailable (p.47).

When we release our clinging to what used to be and our craving for what we think should be, we are free to embrace the truth of what is in this moment. Mature hope embraces the truth that no matter what we do or don’t do, things will change. Change is constant and inevitable. Hope for an unchanging world quickly becomes discouragement (p.48).

More important, contemplating Ostraseski’s words moves me into readiness to think about other of his ideas, about the uncertainty of life, for one.

In death and in life, should we “hope for the best” or “expect the worst”? What if instead, we cultivated a non- judgmental attention and commitment to being with the truth of whatever is present? Suppose rather than choosing sides, we developed the mental clarity, emotional stability, and embodied presence to not be swept away by the cycle of ups and downs, of hopes and fears? Balanced equanimity gives rise to a resilience that is fluid and not fixed, trusting, adaptable, and responsive. Perhaps we might accept our past, ourselves, others, and the continually changing conditions of our lives “as is”—neither good nor bad, but workable. It’s helpful here to take refuge in impermanence. Not in the expectation that things will turn out as we hope or fear, but in the fact that things will change whether we want them to or not (p.52).

“Workable.” That feels like something I could welcome. (Because controlling everything doesn’t work. Plus it makes you feel bad.) (Someone remind me of this when I start to micro-manage the world….) (Ugh. Letting go of lifelong habits in favor of something new….)

This is where the energy of hope has a place—not as a wish to be fulfilled or a plan to be formulated and executed, but in how we meet the ever-changing moment. The present moment includes all time; it is the all- inclusive now. The present moment could best be described as the flow of life. We are continually being shaped by it, and we are shaping it through the way we meet and respond to it. Don’t wait is an encouragement to step fully into life. Don’t miss this moment waiting for the next one to arrive. Don’t wait to act on what is most important. Don’t get stuck in the hope for a better past or future; be present (p.53). 

So often, in online forums, I hear cancer people encouraging each other, at the start of a new line of treatment, to believe that the treatment will be able to cure them. Or that the doctors wouldn’t be treating if they didn’t believe a remission (or cure?) was possible. So often, people seize on new research studies with the single question, “Where can I get it?” I hear– and feel– their desperation. But we often don’t realize the miracle breakthrough cures of the movies are myths.  Scientific research is incremental and slow. If, in trials, a drug shows extraordinary promise, the FDA will offer a compassionate care release, but that’s not always the case. Even that takes time, e.g., into the second phase of a trial (which could be a year or more.)

I believe I’ve found the beginnings of a new approach to living in Ostaseski’s words. I see there are no guarantees in lung cancer treatment. I may have a decade or more on this medicine and that would be awesome. And I may not; I have absolutely no control over this.

What I can do is be present, right now, even if it means for chores I don’t love (ugh, cleaning the litter box). I have exciting plans ahead, including some great bike riding and some travel. And I am developing a new sense of a deeper self, one a member of my compline group calls “the eternal self.” That work is part of each day.

I feel very, very, very lucky– and grateful. And, I want to add, I am failing at any number of the practices and attitudes Osteseski describes. “Welcome everything, reject nothing,” he says. Then, there’s something about compassion. Uhhhh, not yet (by a long shot.) But, #goals.

Thanks for reading. Here’s hoping you live in some hope daily. Maybe with a little cake?