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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