email sent November 1, 2015

Subject: Wandering…

… or, Hope, Dreams and Change

Spoiler alert: This email contains no clinical update information.

The infusions are over, but I’m still enrolled in the immunotherapy trial. I’ll report in on a monthly basis for check-ups for a year. The end of treatment didn’t mean all that much to me because of the absence of side effects. Sure, my visits will be shorter and fewer. So? That’ll be nice. But with each passing day, the delight and thankfulness and gratitude of finishing the dosing sunk in more and more. And that was after only two days! Apparently, it was a much bigger deal to me than I realized. It’s been over a month and I feel oddly liberated. I’m still short of breath, especially at high altitudes, but I feel great. I don’t even take naps like I did.

Since my last email a little over a month ago Vicki and I took our weeklong 1200-mile road trip through northern New Mexico. We held true to no reservations and no destinations and avoiding the interstate highways when possible. We drove the “Devil’s Highway” (previously named Rt. 666) and the “Turquoise Highway.” We received hundreds of dollars of freebies in the form of free drinks and reduced room rates… without even asking. We explored ancient Indian ruins and petroglyphs, a restaurant where if you started with dessert you got 10% off the price of the meal, stayed at an old Harvey House hotel by the side of the tracks near that famed (but mythical) corner in Winslow, Arizona and watched the super lunar eclipse as the moon rose over a mesa at Ghost Ranch where Georgia O’Keefe once painted. Best of all, was all of the acquaintances we met. From roadside Navajo taco vendors on the reservation to two guys who watched us during dinner from three tables away and stopped us on the way out to tell me how fortunate I was to be married to Vicki.

Life… it sure is grand.

I wrote down this thought a few weeks ago… When I read Into Thin Air a few years back about an ill-fated Mt. Everest expedition, the main insight that I gained was that success isn’t reaching the top, it’s getting back down alive. In a curious way the same applies to surviving cancer. I feel like I’m returning to base camp. And because of all the assistance I’ve received during both the ascent and descent, I feel compelled to help others in some meaningful ways. That will be my success. Upon writing that, I realized I had committed myself.

So far, my efforts have been limited to direct interactions. I’ve always tried to share my successes with those just starting this journey. I stepped it up on my last visit to the center. On the limo ride I spoke with the mother of a young woman who had a recurrence of breast cancer even before her first series of chemo was complete. I described my experiences and implored the mother to encourage her reluctant daughter to enroll in a clinical trial despite strong fears of becoming a guinea pig. As we exited the limo, we simultaneously said that there are no coincidences… these things happen for a reason. As good fortune would have it, I happened to meet and reassure the daughter as she was signing the informed consent form.

I’ve also just begun teaching photography to eleven Montessori school 5th and 6th graders. How fun and rewarding! I was flabbergasted by their interest, positivity and excellent behavior. I had forgot how exhilarating life was before beginning middle school and the resulting onslaught of conformity and peer pressure. I immediately learned that I needed to step up my game in order to stay ahead of them. I take the opportunity to sneak in life lessons that I wish I had learned much earlier in life. I’ve reiterated that when people praise or criticize you or your work, they’re really telling you who they are… their biases, their values.

With these recent experiences, I feel to be living what a friend sent me after my last email: “Instead of insight, maybe all a man gets is strength to wander for a while. Maybe the only gift is a chance to inquire, to know nothing for certain. An inheritance of wonder and nothing more.” (William Least Heat-Moon, Blue Highways) I can fully embrace this notion if the wandering includes drifting in a sea of faith and love.

Long ago, I learned that death is a part of life, that they are not separate events. That understanding helped to free me to accept death without fear or resentment. Of course, death has been on my mind quite a bit these last few years, but not as much as you might think.

In February, I sent an excerpt from an essay that Oliver Sacks published after learning he had incurable liver cancer. The acclaimed neurologist and author of Awakenings, passed at the end of August. He touched many lives in ways that were heretofore unfathomable. He “awakened” patients suffering from encephalitis, enabling them, albeit briefly, to return to the world of their loved ones and their own consciousness.

My extraordinary radiation oncologist thoughtfully passed the following on to me. William Falk honored Dr. Sacks in a message entitled, A Lesson in Dying

“There is no shortage of advice on how to live, but precious little on how to die. It should be a topic of universal concern, but is scrupulously avoided, so fearful are we of our mortality; even the dying rarely address death directly. So it was with great admiration that I read neurologist Oliver Sacks’ essay six months ago about his impending death from metastatic cancer. With the attention to detail, insight, and childlike wonder that marked all of his writing, Sacks confessed his sadness at leaving the party, but noted that ‘my predominant feeling is one of gratitude.’ His had been a rich, deeply considered life. ‘Above all,’ he wrote in a beautiful coda, ‘I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.’

“I have lived long enough now to have seen a fair number of people face their deaths. There are many ways to go: with rage that this could happen to me; in silent terror and pain, clinging to life through punishing medical treatments; and with a sad but accepting equanimity. Those who enjoy life most, strangely enough, seem to let go of it with the most grace. People like Sacks seem to intuitively understand all along that we are visitors here, passing through a great mystery. Every moment of life, including the final ones, is a gift — a chance to appreciate, grow, connect, and give back. When my time comes, I fervently hope I can exit with a semblance of Sacks’ dignity and peace, and if I may be so presumptuous, I wish the same for you.”

[The full essay of Dr. Sacks is available at http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?_r=0 He passed on August 30.]

In conclusion: “There is no change without the dream, and there is no dream without hope.” P. Freire

With love, gratitude and prayers,

Jim

 

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