email sent November 24, 2015

Subject: Cheers!…
… or, Why Land at New Plymouth in Winter Instead of Farther South as Planned?

It’s been two months since the end of my infusion portion of the clinical trial. Consequently, today I had the first CT scan in my one-year follow-up period. And the results are in… nothing’s changed and nothing new! As Vicki predicted two days ago, “You’re going to slam dunk us into the thankful of Thanksgiving.” And right she was! Woohoooo! Not only that, last week we learned that Ned is coming home for the holiday, so we’re set for some great family times.

It’s also time for my annual Thanksgiving message. The theme remains the same: I’m extremely thankful for you and for the countless blessings I’ve received.

I hear a lot of very nice comments regarding my update emails. Thank you! But I receive far more from all of you than you receive from me. Thank you for all that you have taught me… in your responses, in your friendships, in your caring, in your thoughts and in your prayers. I’ve been the beneficiary of truly overwhelming good fortune.
I’ve learned some very basic life lessons from you. As I mentioned previously, on the river I learned to resist the temptation to insist on being right. One companion actually expressed that outright to me. That awakening has also helped me to better listen to what people (especially Vicki) are telling me as opposed to just hearing what they are saying. (Yeah, I know what some of you are probably thinking. Hey, these things take time.)
My eyes have welled with some of the teachings, both with sadness and joy. I’ve been witness to the grace and strength and tragedy with which some friends and family have left this life. As a lovely daughter wrote, “As many of you know, to my mom, love was a verb, to be acted upon with every beat of her heart. Please take her lead, show your love and bless others with your actions.”
On a different note, I received an astounding text message from very good friends, pilgrims, on the Camino de Santiago. I was told, “I walk for you as well.”

As a side note to taking action, I ran across a passage written in the 1800s:
“Take care of your thoughts because they become words.
Take care of your words because they will become actions.
Take care of your actions because they will become habits.
Take care of your habits because they will form your character.
Take care of your character because it will form your destiny.”

Last week, I went to sleep pondering how to express my thanks. I awakened thinking that we too often choose to exaggerate our differences with one another, especially with those in foreign countries and those with foreign beliefs. This attitude masks our fundamental connectedness. The notion and illusion of individuality blinds us from the acceptance of our collective oneness and the bliss that blossoms from that understanding. (What a way to wake up, eh?)

Ned recently reminded me of the extraordinary TED talk (the most popular of all time) of neuroanatomist, Jill Bolte Taylor. She eloquently described her experience of surviving a stroke. With her left brain compromised, her right brain assumed control. As she stated in an interview…
“I just really didn’t have any energy left in my body, and I curled up into a little ball, and the best way for me to describe it, is I felt my energy shift. I felt my whole body become lighter. I surrendered, if you will, and I knew I was no longer the one choreographing my life and either the doctors rescue my body and give me a second chance at life or this was going to be the moment of my death. And I have to say that it was, you know, you hear about these stories about that’s it’s an extremely peaceful experience, well, for me it was a total experience of euphoria. So I essentially found a space of nirvana.”
I once entered that magical realm as I flirted with shock while floating downriver under very high water conditions. I clung to our raft, with no one around. As I marveled at the exhilaration, I further enjoyed basking in the oneness and connectedness with all others. Years later and I’m still a sucker for all movies that incorporate that sort of plot element, even the cheesier ones, including Lucy.

As a believer in the oneness of humanity I’m also a sucker for forgiveness. I cannot imagine a more poignant and heart-wrenching example than what follows…
Nelson Mandela spent 27 years in prison. Upon being elected President of South Africa, he chose against retribution. Neither did he opt for unconditional amnesty for those who committed atrocities during apartheid. Instead, he created the Truth and Reconciliation Commission as a mechanism to engender forgiveness. The perpetrators had to fully confess their transgressions. Their victims could choose to forgive them. The process successfully allowed the nation to move forward without massive bloodshed or pervasive latent hostility. The process lasted two and a half years.
One policeman, van de Broek, recounted how he and other officers shot an 18-year-old boy then burned the body to destroy the evidence. Eight years later, he returned for the father and forced the mother to watch as he was burned alive.
The mother witnessed his confession. When asked what she wanted from the man, she calmly replied, “I want three things. I want Mr. van de Broek to take me to the place where they burned my husband’s body. I would like to gather up the dust and give him a decent burial. Second, Mr. van de Broek took all my family away from me and I still have a lot of love to give. Twice a month, I would like for him to come to the ghetto and spend a day with me so I can be a mother to him. Third, I would like Mr. van de Broek to know that he is forgiven by God, and that I forgive him, too. I would like someone to lead me to where he is seated so I can embrace him and he can know my forgiveness is real.”
Van de Broek fainted just before others in the courtroom began singing Amazing Grace.

I recently watched a documentary film about the search for the Yorktown and Japanese aircraft carriers that were sunk during the Battle of Midway. Remarkably, the American carrier was found (by the same crew who located Titanic). Even more remarkable, two Japanese and two American survivors from that epic naval battle were united on the search vessel, forging friendships and sharing tears as they honored their fallen comrades. Such a reunion seemed impossible not so long ago, but in the theater of connectedness it not only seems probable, but even inevitable.

Not coincidentally, this theme emerges as I’m reading the rich tale of a friend’s sailing adventure throughout the Caribbean. He reminded me of the camaraderie engendered by the simple act of sharing a beer (which is somehow different than sharing a wine or whisky) with complete strangers, with friends and especially with our partners. It’s too easy to take such revelatory rituals for granted and allowing them to evaporate. Even the numerous such experiences in the Phoenix airport over the last year weren’t sufficient to awaken me. It took my friend’s loving account of his journey with his wife and two girls to remind me of earlier days when such bonding was commonplace, forging lifelong connections cemented with love and hope.

With love, hope, gratitude and thanks, I raise a beer to you… Slàinte mhath! Prost! Salute! Kanpai! Happy Thanksgiving!
Jim

p.s. As one Pilgrim wrote about the choice of landfall, “We could not now take time for further search, our victuals being much spent, expecially our beere.”
p.p.s. Why do Pilgrims’ pants always fall down? Because they wear their belt buckles on their hats.

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