email sent March 28, 2015

Subject: So Very Privileged…

… or, A Different Kind of Poster Child

I actually have news to report. First, the clinical update. Earlier this week I was CT scanned for the third time since entering the clinical trial, an event that occurs every 8 weeks. My biggest issue has been a once very large tumor and two much smaller ones in my left lung. The treatment is continuing to work wonders there. There is, however, a new tumor emerging in my right side. It’s not a great concern at this point. And depending on whether that location had previously been irradiated (which it probably wasn’t since the tumor was able to emerge), a few high doses of targeted radiation are possibly in my future. If that’s the case, the tumor should be zapped in short order. Not only that, I’d be able to remain in the trial! We’ll know more next week. Needless to say, I’m eager to learn about the prognosis.

The obvious question is why isn’t the drug working on that tumor as it is on the others? The answer may lie in what occurred during radiation two years ago. Does this tumor not express the PD-L1 protein as the other tumors have?

I learned that I’ve become the poster child for the drug I’m taking! Well, it’s not exactly a poster, and I’m not exactly a child, my name doesn’t appear, not even my face. Just my before and after scans are being showcased, showing the indisputable dramatic reduction in tumor size in just the first 8 weeks.

CTCA, my cancer center, co-sponsored a new mini-series on cancer produced by Ken Burns. The series is a film adaptation of Siddhartha Mukherjee’s Pulitzer Prize-winning epic book, The Emperor of All Maladies: A Biography of Cancer. The 3-part series will be aired on consecutive evenings on PBS beginning this coming Monday, March 30. Last night, the author and about 100 others, including clinicians and guests of the local PBS station, attended the airing of a trailer for the series followed by a panel discussion addressing the future of cancer research and treatment. As a patient enrolled in a leading edge clinical trial, I was asked by the CTCA marketing director to share my story to kick off the evening. The intent of the gathering was to communicate CTCA’s very active role in cancer research and to bring the oncology community together to better serve patients. Vicki and I were excited to pay forward all the blessings and care that have been provided to us. It’s a very special opportunity and honor, both humbling and gratifying.

A 10-second presentation of my initial and 8 week scans, adding that I’ve experienced zero side effects, would have made for a great (and stress-less) talk. This wasn’t an option because it could be considered promotion, which is not permitted with a drug still subject to FDA approval.

Condensing my story to 5-10 minutes proved to be quite the challenge. One night, unprompted, Vicki provided the opening, suggesting that I summarize the many onerous side effects of my 4 previous treatment modalities, introducing each with “I know…” (Yes, I mentioned that I know toes like Snausages, becoming a Michelin Man look-alike, as well as Skeletor Man.) I had intended to conclude that portion of the talk with a quotation from Dr. Mukherjee’s book, “Cancer therapy is like beating the dog with a stick to get rid of his fleas.” I described the almost miraculous results with the current treatment, all with zero side effects. I acknowledged the exceptional help I’ve received and the lessons I’ve learned about how to proceed after diagnosis (ask for help and immediately seek a second opinion from the best oncologist you can find). I concluded by waxing a bit cosmic and spiritual based on some recent occurrences and musings.

On a recent Saturday morning, I was lazily watching The Best Exotic Marigold Hotel when the following dialogue caught my attention.

“How can you bear this country [India]? What do you see that I don’t?”

“Oh, the light, colours, smiles, and the way people see life as a privilege and not a right. It teaches me something.”

I concur. Life is a privilege, not a right. That sounds sort of trite, sort of simplistic. It’s easy to nod agreement and move on. But please indulge me for a moment. Please consider what you have been privileged to see, do, think, feel, love just today.

We are almost too privileged, so much so that we take it for granted.

I intended to muse about how diseases like cancer can rob us of a profound aspect of being human… a belief in the future… making plans, anticipating joy. But I did discuss that I wasn’t completely honest earlier in my talk. I shared that I have experienced one significant side effect in the trial. And that is hope. I hope that the treatment will continue to act as it has. I hope that my immune system will continue to do its job when I no longer am part of the trial. But most of all, I hope that just like so many before me have helped me, I hope that my participation in this trial will spare others in the future from treatment by chemotherapy poison and radiation burning and allow them to experience the same exceptional results that I have.

As this update winds down, I’m including more quotations from The Best Exotic Marigold Hotel

“The only real failure is the failure to try. And the measure of success is how we cope with disappointment. As we always must.”

“But it’s also true that the person who risks nothing does nothing, has nothing.”

Thank you Vicki, my life-giver, thank you Ned who has always believed in my ability to survive, thank you Dr. Weiss and Lisa and infusionists, thank you CTCA, and the cancer treatment community, my remarkably supportive and thoughtful family and friends, and whatever higher powers that are watching over me. I think and hope that my mission is to pass on the innumerable blessings that I’ve received from all of you.

To that end, I love sharing the messages that you tell me and send me. I meet so many people these days due to my frequent flying and limo rides. We very quickly dispense with the pleasantries and discuss what matters most to us. I hear so many inspirational stories that astound and ground me, some of which I’ve learned to refer to as divine guidance. Just a couple of weeks ago a great friend captured the essence of what I’m trying to say when she sent me these words from Madisyn Taylor…

“When you bare yourself to another, you are giving them the gift of you and showing them that they also matter. In letting yourself be witnessed, you are letting others into your intimate space, stepping in the sacred container they have created for you, and creating a cauldron of positive affirmation, support, love, and goodwill that will stay with you forever.”

Thank you all, again, for sharing.

With love and gratitude, hope and privilege,

Jim

p.s. I created a blog using WordPress. The blog address is https://sometimesgodthrowsabrick.wordpress.com/, with the tagline, Thriving while surviving lung cancer: musings, updates and advice. For now, it only contains the update emails.

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email sent February 24, 2015

Subject:  The Future Is a Dream of Confidence…

… or, Thank You All for the Humbling Connections

I won’t have more CT scan results to report on for another month or so. In the meantime, fodder for the next email has been accumulating, so I’ve opted to send an interim update. I’m doing great. Still no side effects. My breathing is better than it’s been in a long time. Even the lingering neuropathy is less bothersome. Steep, narrow stairs are no longer daunting. Suffice it to say that I’m finally at the point where I believe that my credit cards will expire before I do. That’s it for the clinical update.

Oh yeah, I just started receiving electroacupuncture treatments at CTCA for the neuropathy. Why not give it a try? It’s one of many services that the center provides. Every visit includes nutrition and naturopathic medicine follow-ups.

You may recall that I wrote of do and don’t do new years advice back in January. I received the following in response.

Do: Remember. Everything as much as you can, it will be the good stuff.

Don’t: Forget.

Do: Carpe diem and trust my process and everyone else’s.

Do not: Do not think I know, because I actually know nothing!

Do: Absolutely to make gratitude an integral part of my life, as well as, to always be kind – it costs nothing and we never know what others are going through themselves and who might need that kind act or behavior.

Don’t: To not think that things stay the same and despair as a result.

Two more friends noted that God creates rainbows for a reason.

Terminal illnesses evoke the best in humanity, both from the afflicted and from their close friends and family. Randy Pausch wrote his book, The Last Lecture, as he was dying from pancreatic cancer. Among his insights were, “No matter how bad things are, you can always make them worse,” and “When we’re connected to others, we become better people.”

Oliver Sacks recently wrote an essay entitled, My Own Life, which was published in The New York Times in which he addressed his response to the diagnosis of incurable liver cancer. You might recall that he is the neurologist who wrote the memoir, Awakenings, which described his treatment of encephalitis survivors with the drug L-dopa, who after many years of living in catatonic states were temporarily restored to normal lives. Here is an excerpt from his essay.

“Over the last few days, I have been able to see my life as from a great altitude, as a sort of landscape, and with a deepening sense of the connection of all its parts. This does not mean I am finished with life.

“On the contrary, I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.”

I can share a poignant encounter that occurred very soon after my diagnosis with two Germans who had recently befriended me. They surprised me by visiting me at my Flagstaff office. I hadn’t even known that they were in town. A few days ago I wrote this to one of them… “I can never express to you how much it meant and continues to mean to me for you to visit me when I was first diagnosed. When you visited, I had no expectation of surviving for very long, only that I was determined to give it my best shot. Few seek out people who they think are dying. I completely understand why. I’ve been there. But you [both] exhibited remarkable compassion and courage that inspired me even more to achieve what I have. I cannot tell you how many hundreds of times I’ve seen you both at my office doorway.”

I might add that you learn where you stand with people by their immediate reactions when you inform them that you’ve been told that you have weeks to months to live. Their responses are contagious. And unforgettable.

Some corollaries to the words of Randy Pausch and Oliver Sacks can be found in these quotes from Kahlil Gibran and Susan Bachrach, respectively. “When you reach the heart of life you shall find beauty in all things, even in the eyes that are blind to beauty.” “You always have no, you can try for yes.”

A very good friend sent me the poem, To Begin With, the Sweet Grass, by Mary Oliver. The poem ends with…

“I have become older and, cherishing what I have learned,

I have become younger….

… And what do I risk to tell you this, which is all I know?

Love yourself. Then forget it. Then, love the world.”

I also recently mentioned that I might be in a commercial for CTCA. Well, that has not materialized, but I was interviewed and photographed for a press release and other promotional materials intended to spread the word about the wonders of immunotherapy and to assist in the recruitment of patients. I very much appreciated that some of the photo setups included both Dr. Weiss and Lisa. After all, we’re in this together and have been for a few years. One of the shots of me is intended to be used internally along with a statement I made during the interview in response to being asked what is the biggest change in my life as a consequence of this treatment. I responded with something on the order of, “Now we can again plan for the future.”

I wish to wrap this up with what Vicki inscribed in one of her Valentine’s Day cards for me:

“There are four questions of value in life… What is sacred? Of what is the spirit made? What is worth living for and what is worth dying for? The answer to each is the same. Only love.”

This quotation from Lord Byron warrants rereading.

With ever-deepening love and gratitude,

And may rainbows encircle your life,

Jim

 

Sometimes God Throws a Brick: A Chronicle of Living, A Reflection on Life…

or Thriving while Surviving Lung Cancer: Musings, Updates and Advice.

I was first diagnosed with Stage IV lung cancer 4 years ago. I was scheduled to fly around the world on a business trip, to work with friends in a few countries. Obviously, I had to cancel the trip. Despite my desire to keep the diagnosis and dire prognosis (weeks to months) quiet, I knew everyone would want to reschedule. So I was compelled to send an email explaining my situation. The response led to advice that saved my life: ask for help and immediately seek a second opinion from the best oncologist you can find. That email led to a stream of update emails. These missives have evolved from clinical updates to becoming more philosophical and spiritual. They, plus excerpts from my journal, have been collected into a memoir entitled Sometimes God Throws a Brick that can be downloaded free of charge from my website jamesdlewis.com. Another document, Cancer Treatment Advice, is also available for downloading.

This blog will feature my update emails.