email sent March 18, 2016

Subject: We’re Enough…
… or, Asking for It

I went to Goodyear CTCA on March 8 for routine blood work and an exam from Dr. Weiss. He reviewed my February scans with me. Three spots may have increased in size, 2 on the left side and 1 on the radiated right side. They were all under 1 cm, so they posed no great immediate concern. Even if they are growing, the growth is far slower than when I presented two summers ago. Should they continue to grow, Dr. Weiss suggested that my first option would likely be to resume the immunotherapy treatment for up to a year. It is possible that my T-cells could benefit from an extra little boost. Should that not work, three new drugs have recently received FDA market approval. (At least one of which is anti-PD-1, a close cousin to the drug I had been taking.) Each one might suit me. Plus, more new drugs are nearing FDA market clearance. I’m still doing well and with so many options I’m not really concerned at this point. It still is what it is.

I also learned that my immunotherapy drug company sponsor, AstraZeneca, will be providing me a phone number to call them. (My identity is blinded to them; they just know my clinical situation.) They had told Dr. Weiss and Lisa that they wanted to make me “famous,” whatever that means. (I’m probably good with it as long as it’s not a posthumous honor.) I’m not interested in becoming famous, but I am very interested in spreading what I’ve learned. And it would be extremely nice to receive the assurance of uninterrupted follow up and/or treatment at Goodyear so that I could remain in “active treatment” and thus avoid Medicare issues. (Hey, come on, I’m not above shameless bargaining when my life is at stake.) And, now that I think about it, famous would be okay if it meant flying us to Bora Bora first class for a few weeks vacation. Dreams, ya gotta have dreams.

That’s it for the clinical update. Now, for a couple quotes I learned earlier this month…
“Substitute curiosity for knowledge.” Anon. (Shared by my dental hygienist as she was probing me.) In other words, instead of being sure about your opinion, ask and probe for more information. She also wondered aloud why goodness and love weren’t discussed more openly.
About the same time I found an article by Deepak Chopra in which he wrote, “Coincidences are not accidents but signals from the universe which can guide us toward our true destiny.” He went on to add, “The key is to pay attention and inquire.” All right, already. I get it.
Excerpted from http://www.beliefnet.com/Wellness/2003/10/Coincidences-Clues-From-The-Universe-By-Deepak-Chopra.aspx?p=4 (I recommend the entire four page article.)

And also this month a great friend suggested that I listen to two exceptional TED talks from Brené Brown: “The power of vulnerability” and “Listening to shame.”

The topics sound dry and deadly… they’re anything but. Dr. Brown is quite entertaining and convincing. Her research results astounded her, they completely contradicted her academic precepts and methods.
She had this to say about vulnerability: “… probably the most important, is to believe that we’re enough. Because when we work from a place, I believe, that says, ‘I’m enough’ … then we stop screaming and start listening, we’re kinder and gentler to the people around us, and we’re kinder and gentler to ourselves.”
Her take on connections especially resonated with me. “Shame is the fear of disconnection: Is there something about me that, if other people know it or see it, that I won’t be worthy of connection?” I was finishing writing the short story that I mentioned in my last email that happens to be entitled, Connections. After discussing the plot, my friend recommended the TED talks, which subsequently influenced the tale. It’s difficult to convey how so many events and discussions, i.e., connections, over the last few weeks both guided forward while at the same time manifested the plot. I’ve never been so consumed by anything I’ve ever written before. I was enchanted by how it revealed itself to me. I never knew what turn it would take next until I felt it was the right time to continue writing, which occurred with increasing frequency as it neared completion.
The story can be viewed or downloaded at
http://jamesdlewis.com/shortstories/connections.html.
It contains an addendum that describes how to create a healing room.

I’ll leave you with this thought… It’s not so much what you decide, but rather where your decision comes from. If it originated in your heart, it can’t be wrong.

With love, gratitude and wonder,
Jim

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email sent February 25, 2016

Subject: Cosmic Interconnectedness…

… or, What, No Laws of Physics, Not Even Guidelines?

My last CT scan and dosing occurred three and five months ago, respectively. I was scanned two days ago on Tuesday. The good news is that the remnants of tumors in my left lung, the ones that necessitated the immunotherapy, were unchanged. The less good news is that a very small new bugger (not my word – thanks, Marnee) appeared on my right lung very near the one that was radiation zapped last April. Its circular shape makes it a suspicious candidate to be a new tumor, though it could be a consolidation of fragments of the old one. It’s too small to biopsy and not large enough to meet the size threshold for concern (1 cm). It’s close to that size, so we’ll scan again in two months.

I gotta rave about my treatment team at CTCA. Dr. Weiss had taken time off for a very special reason and therefore was unavailable to look at my scans, so Dr. Spierer, my radiation oncologist, took it upon herself to examine the scans Tuesday night. She pulled up previous scans and even called Dr. Weiss to discuss the results, then emailed me close to 9:30 pm when she got home from work. She gave me her personal number to call to discuss their thoughts. The next day, Dr. Weiss, still on his own time, discussed my case with my favorite nurse, Lisa, who in turn called to pass the information on to me. She was considerate enough to suggest a scan in just two months instead of the customary three. So, hey, can medical care be any better than that? I’m way beyond being blessed.

Here is an eclectic assortment of quotations…

“Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove we showed up for it.” Anon. (tweeted by Iman after her husband, David Bowie, passed)

“Close your eyes and imagine the very best version of you possible. That’s who you really are, let go of any part of you that doesn’t believe it.” C Assaad

“When you have gained a certain amount of experience, you find that a desire to help all people arises in you.” Mikhail Prokhorov

“What I experienced during that three-day trip home [after walking on the moon] was nothing short of an overwhelming sense of universal connectedness. It occurred to me that the molecules of my body and the molecules of the spacecraft itself were manufactured long ago in the furnace of one of the ancient stars that burned in the heavens about me.” Edgar Mitchell

On the topic of connectedness, many of you have expressed interest in my internal healing room. (Employing this technique is sort of the unambitious alternative to meditation. Meditation light, if you will.) Last Fall, I had a fascinating and extended conversation with my guardian angel/healing room helper in my healing room. She noted that everyone has spiritual skills, it’s just that not everyone knows how to access them. Sort of like having memories, but being unable to reach them. She suggested that I teach others about creating their own healing room, just as I had learned to do it. She added that I should maybe write a short story about it. Reading the story would enable anyone, healthy or not, to build such a room to help themselves and others.

By the end of the year I was writing the story in earnest. The scope has grown considerably. And as is the case with many writers, the story is writing itself. Plot development has arisen out of nowhere as I’ve typed, leading me into totally unfamiliar realms. In a major plot twist, the protagonist (Justin) additionally created what he called a connections room because interconnections play an enormous role in health and healing. Prayers, thoughts, recommendations, treatments, caregiving all fall within that general category. Figuring out how to create such a room has been a hoot. Just imagine what fun it is to be an engineer unconstrained by the laws of physics. It has a simple layout consisting of life strings, way posts and time markers. Plus, it features a very useful medicine cabinet. I’ve already given the room and the medicine cabinet a trial run. Upon connecting my life string to the cabinet, I was thoroughly overwhelmed by the appearance of a multitude of faces. I instantly recognized many of you. Many more people were present in the background, too. I’m eager to learn what happens next to Justin and me.

On a less ethereal plane, I probably won’t be sending another update email until the end of April when I’m due for another scan. In April, I will pass the 5-year mark since the initial diagnosis. That’s the longest follow-up that I’ve found actuarial data reported by the National Cancer Institute. At 5 years, the survival rate for my type and stage of cancer is 3%. I found other data to suggest that it’s 1%. Crazy odds. And I’m off treatment and feeling/doing great. If I believed that I’m deserving of miracles I’d characterize it that way. Instead, I call it almost miraculous.

What advice do I have for others going through this or something similar? I’ve shared a lot over the years. Perhaps most succinctly I’d recommend embracing, as soon as possible, the mantra “it is what it is” and facing the challenges head on, without delay. Your face might get bloated, it might become hollow, but at least you don’t have to see it that much. Unlike others. From the inside, you don’t look that bad at all. (With that in mind, I also recommend against photo documentation, especially selfies, as they distort enough as it is.) And if I had to condense my advice to a single word, that word would be immunotherapy.

So, what are my major takeaways from this journey (other than Vicki and Ned are wonderfully amazing and that I have an astounding support network)? I’ve concluded…

It’s a world full of talent, faith and goodness. It’s not so much a small world with a multitude of coincidences, as it is a connected world and a connected world is a healing world and a healing world is a world filled with gratitude and love.

With love and gratitude for the many connections,

Jim

p.s. Vicki shared these with me:

“Creativity is intelligence having fun.” Albert Einstein

“The meaning of life is to find your gift. The purpose of life is to give it away.” Pablo Picasso

p.p.s. Vicki also turned me on to this entertaining left brain-right brain test: http://www.arealme.com/left-right-brain/en/

p.p.p.s. And, yes, I recognize the seeming coincidence of completing the connections room just prior to the recent scan results warranting its use.

 

email sent January 4, 2016

Subject: Potpourri…

… or, You Can Find Your Life’s Porpoise in the Ocean

I have no health update to report except to say that all is well. My next CT scan isn’t until near the end of February. For the new year, I’m sharing some recent learnings and reaffirmations. They are all related, at least tangentially, if you wish to see them in that light.

A childhood friend said it well, ”Miracles abound when not denied.” A great winning attitude, as is striving to welcome grace into our lives.

“Gratitude opens a crack in consciousness that lets grace in.” Harry Palmer

“I do not at all understand the mystery of grace – only that it meets us where we are but does not leave us where it found us.” Annie Lamott

Manifestation naturally follows acceptance, and service naturally follows manifestation.

Dennis Saleebey taught that hope and possibility are the ingredients for change and recovery. Hope has a storied history and continues to drive us to achieve loftier goals. Hope, we are told, was all that remained inside when Pandora resealed the jar. I also learned that Aphrodite had shed grace upon Pandora’s head, along with “cruel longing and cares that weary the limbs” as described by a contemporary of Homer.

Cole Thompson, a photographer, wrote the following in his blog: “I’ve long understood the role of Vision in creating work that I love, but now I’m beginning to appreciate the role of Passion as being nearly as important. With Vision I can create unique images. With Passion comes an excitement that drives me. And while I might use each one individually to some success, I now realize that my best work is created at the intersection of Vision and Passion.” I appreciated this observation, it enabled me to identify the most compelling reasons behind my choice of favorite images. Even more impressive was that this message has applicability to all pursuits.

I recently happened upon what is now one of my all-time favorite TED talks, How to Know Your Life Purpose in 5 Minutes, by Adam Leipzig, a highly accomplished movie and theater producer. It sounded so gimmicky and brief that I had to listen. I admit I grew even more skeptical when I saw that it was ten and a half minutes long. At his 25th college reunion Leipzig observed that only 20% of the attendees were happy, despite the high degree of financial success of all of these Yale graduates. He learned the following from speaking to the 20%. “I discovered that each of them knew something about their life purpose because they knew five things: who they were, what they did, who they did it for, what those people wanted or needed, and what they got out of it – how they changed as a result.” He led the audience in identifying those five things for themselves. Only the first two are about ourselves, the other three are outwardly directed. People relate to us for what we can uniquely share with them. What gives our lives purpose is how we change or transform others as a consequence of what we give them. Leipzig also noted that “happier people make it a point to make other people happy, and do things that make them feel well taken care of and secure. If you make other people happy, life teaches us, we will be taken care of, too.”

I highly recommend that you watch this video and share it with others. It’s universally relevant… we’re never too old to learn our purpose and our purpose can, and often does, change. The speaker is far more convincing than I and he finishes his talk with the best way to answer the everyday question, “So, what do you do?”

[https://www.youtube.com/watch?v=vVsXO9brK7M]

(If you’re willing, I’d love to hear of your life’s purpose. I won’t share it without your permission.)

“When I let go of what I am, I fully become what I might be.” Lao Tzu

With love, gratitude and purpose and wishes for a wonderful new year,

Jim

p.s. “The greatest pleasure in life is doing what people say you cannot do.” Walter Bagehot It is especially true if you are one of those people saying you cannot do it.

 

 

 

 

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

 

email sent September 21, 2015

Subject: Chasing Time…

… or, How’s This for a Short eMail?

It’s been almost a year since I entered the clinical trial. Time sure flies when you feel good. I just received my last dose. Woohoooo!!! At least that’s the plan. If a tumor or two chooses to misbehave over the next year I can likely qualify to get dosed some more. Otherwise, with the recent FDA release of other immunotherapy drugs and related clinical trials, multiple options are possible. But, for now, I’m banking on my immune system to continue to thwart the malevolent scoundrels.

And this Friday, Vicki and I are heading off on a road trip to somewhere in New Mexico. We have no reservations. As it once was. As it should be.

I cannot thank enough all of you and so many others whose care giving, expertise, prayers, kindness, positive thoughts and well wishes have got me this far… especially Vicki and Ned. The outcome has been beyond, well beyond, all of my hopes.

With continued love, gratitude and amazement,

Jim

email sent September 8, 2015

Subject: Lessons from Our Scars…
… or, How I Learned to Snooze on a Sharp Rock Bed

I’ll begin with today’s CT scan results. After that I’ll engage in an extended and meandering response to what might appear to be a simple question. I’ll understand if you choose to concede after reading the clinical update.

The scans continue to provide good news! The small tumors in the left lungs remain unchanged and the recently arising tumor on the right side is a “teeny bit smaller.” What’s more important than the radiological findings is my clinical situation. Simply stated, I feel great.
After tomorrow, I’ll have just one more infusion to go! Then, in compliance with the clinical trial protocol, I’ll make short follow-up visits for a year, including periodic CT scans (the next will be late November). My social life will suffer, but I’ll manage. I will sorely miss seeing the phenomenal physicians and nurses as often and for the length of time as I have. They excel not only in their patient treatment skills, but also in sharing their many fascinating life stories. I’ll also miss the brave, often hilarious and always inspiring patients and caregivers during the limo rides. I’ve even got to the point of joking with some of the TSA agents in Flagstaff. (They sure can be an incredibly dour lot, can’t they?)

Now, for the non-clinical portion of this message…
What’s it like to have cancer? It’s a question that very few ask, many would like to ask, and many more don’t wish to know. I was in the last category until a few years ago, now I’m in the first one.
The simple answer is that it’s as different to every person as every one of us is different from each other. And furthermore, every cancer is different. Cancer types may appear the same, but the course they take is unpredictable and unique to the individual. Not surprisingly, we all respond differently. Like life in general, cancer is very personal, only more so because it consumes so much of the consciousness of its hosts, its victims. It can be a grim stalker that incessantly vies for attention.
But there are some commonalities among us, the afflicted. Some positive ones. We tend to see and hear and relate to one another with candor. We can also do so with others experiencing an illness or pain. Sometimes just a reciprocated look can unlock the barriers and express the mutual understanding and empathy. The recognition of shared emotions is almost palpable, often initiating a salty communion.
We change. We grow accustomed to pharmaceutical invasions, to keeping track of what pills to take when for how many days, to probes and needles, to repeated questions, to providing fluids, to scans, to chills, nausea, imbalance, insomnia, to annoying and unpleasant side effects. It almost feels as though there’s a submissive physical existence and an oblivious emotional existence. And then, with good fortune, the treatments end, the invader is vanquished or at least its advance is halted. (Or, as in my case, a benign alternative treatment is administered.) Scars remain. Not so many. Mostly scars of experience. Good scars. Scars that remind us of what we had taken for granted for so long, scars that remind us to better celebrate waking to another day, to do as we wish, not to do as we once felt we had to do. Scars that instill an impetus to actually smell the flower and recall floral fragrances from long ago, scars that impel us to imagine situations like relieving children of pain or suffering. The senses intensify, the empathy flourishes.
Scars can also impel us to join an adventure through the Grand Canyon along its bottom-most route to become reawakened by a profound sense of awe of the power and perseverance that shaped our Earth. The journey humbles those who dare to navigate the often-unbridled river, for we are inconsequential trespassers. Of course, the passage was unimaginably more formidable for the early pioneers, but it still invokes the power and perseverance of current-day explorers. Today’s voyages are far less life risking, but perhaps more life stirring, if only because of the time to dream and wonder due to diminished fear and uncertainty. And should one lapse into complacency, the canyon wren arrives to sing a special melody, a gentle reminder to remain awake and heed the glory of awareness.
As I’ve decompressed from the trip that ended a month ago, I’ve been gratified by a number of revelations and reinforcing considerations and responses. As Vicki had suggested, the trip was a stimulus for perspective, a journey to recognize and celebrate what’s most important to me. That part was easy. I came home to both Vicki and to Ned. I couldn’t have prayed for a better return. It doesn’t get much better than the sharing of laughter with loved ones who matter the most to you. Hanging out in a lush, secluded creek spot on a scorching hot day amplified the experience.
I’ve grown more resolute in how I wish to spend my remaining years. Yes, I said years. I believe what my guardian angel had to say about my future. Even if it doesn’t come to pass, it matters not. It’s an attitude. It’s a belief in living. And for the first time since the diagnosis it feels right. I’ve come to better understand the seasons of life, how we cycle through them, how we replenish and renew ourselves. It’s not just seasons of life, but also seasons of outlooks and of learning. On the river I saw my unnecessary need to be right. Not about everything, just about what I know to be true or factual. I saw the folly of it and the wisdom of silence. With that understanding I entered a new season. (I’m working on it. Really, I am.) I also know that accuracy isn’t the most important element of what I write here. If the messages and their form of presentation resonate just a little, with just a few, I’m satisfied.
And so I’ve also become even more aware of the wisdom of choice. One afternoon on the river, a few of us stayed behind and enjoyed a refreshing pool in Havasu Creek while others hiked much farther upstream. The threat of a flash flood drove us to higher ground. When the clouds broke, the sun exacted its radiance on the extremely jagged rocks and on us. I sought respite in a very small spot that shaded only my face as I lay on my back. My flimsy hat served as my pillow, offering a modicum of cushioning from the sharp-toothed rock face. And yet I slept. Not from exhaustion, but from serenity. Previously, I would have allowed myself to be annoyed by the discomfort. Not this time. The pointy, hot black rock could have remained painful, instead it became a bed.
The subject of pain has arisen multiple times since my return. I’ve been exposed to three interesting and different takes on it. Rebecca Solnit in her book, The Faraway Nearby (the title of which was borrowed from how Georgia O’Keefe signed off her letters from New Mexico to her friends), explains our need for pain for protection. For, without it we lose our connectivity with our own bodies. She presented the case of leprosy in which bacterial infection causes the nerves in the appendages to swell and ultimately die, causing a complete loss of feeling. The sufferers become dissociated from their hands and feet, and cease to protect them. The absence of pain results in this lack of caring for them that leads to disfigurement and worse. A short time later I watched the pretty good film, Lucy, in which Scarlett Johansson’s character experiences vastly increased levels of brain function. At one point, she inflicts intense pain on another and calmly mentions that pain distracts us from focusing on higher level thinking and understanding. And then there’s the interview I read with Mr. Bad to the Bone, George Thorogood (whose gym locker was next to mine for senior year in high school). As an aficionado extraordinaire of the blues, he disagreed with an interviewer who claimed that love is the one experience that we all share. George corrected him, saying that it is pain. Hence, the popularity of the blues in its many forms.
So, pain is necessary to protect ourselves, pain is a distraction to self-fulfillment and we all know pain. Where does that leave us? For me, reconciling these three seemingly disparate aspects of pain circles back around to the earlier topic of empathy. All three somehow relate to empathy, a feeling, one of the more satisfying manifestations of love.
How’s that for a wildly convoluted answer to the question of what it’s like (for me) to have cancer?

With continued love, gratitude and empathy,
Jim