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,


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,