email sent April 14, 2015

Subject: The Glue of Love….

… or The Elixir of Life, Cerveza,

Starting with the clinical update… Today, Friday, April 3, I returned to CTCA to meet with Dr. Spierer, a radiation oncologist, to learn if I qualify for radiation treatment of the emerging tumor on my right lung. First, let me describe this marvelous physician. She’s perfect for me. Super smart and highly experienced. Great personality and sense of humor. Caring. She patiently answers every question with complete clarity and candor. She came to CTCA because of the way they care for patients and caregivers. Her team is equally impressive. I must confess, between all of my questions and some occasional snarkiness, my eyes watered because of how fortunate I felt to be cared for by all of them, both as a patient and as a person. Dr. Spierer even shared with me the impact my talk the previous Friday had on her. She has told many patients what another patient had shared… about hope and privilege and that life does not mean entitlement. I could not have been more flattered. I had hoped for such an outcome to my short talk, but I never imagined that a physician, much less one as prestigious as Dr. Spierer, would discuss it in her practice.

Okay, now here’s the promised update. My tumor is in a region that had previously been irradiated. But that’s no problem. The problem is that it’s in close proximity to my heart and spinal cord. “It’s going to be tough. It’s close.” “It’s going to be challenging.” She will recommend radiation if at all possible, but she’ll do no harm. I couldn’t ask for more. On Tuesday, I’ll be scanned again and these images will be compared to my original treatment. A physicist will assess the advisability of radiation. I should learn the verdict by the next day. If it’s a go, I’ll receive stereotactic body radiation therapy (SBRT) that, unlike conventional radiation therapy, targets one specific tumor. I’d get 5 treatments, one every other day. Fatigue is the most serious short-term side effect. Longer-term, I could possibly feel pain in areas other than my lungs that had been inevitably slightly dosed during treatment.

Today is Wednesday, April 8. Yesterday was scan day, a dosing day and most importantly our 31st anniversary. Because of the precision and accuracy demanded by SBRT to zap just a single tumor, the setup is significantly different from conventional broad field radiation. For this treatment you are literally vacuum wrapped to restrict movement. Pretty weird! I now know how packaged cheese and hot dogs feel. It’s kind of cozy. I’ll leave it at that. Plus I got 3 tattoos! They’re tiny dots to ensure proper body orientation in the future.

The results are in. Sort of. I got a call from Dr. Spierer. It seems that I received the ultimate, maximum radiation during my previous treatment. Additional radiation does turn out to be an issue. It generally takes 3 years for the body to heal from it. I’m at 2 years, so it’s a bit dicey whether I should get zapped again. The good news is that the tumor is small and I have previously enjoyed an excellent response. The bad news is that the tumor is smack dab in the middle of the previously radiated region. The concern is excessive damage to the great vessels adjacent to my heart. Based on her review of the scant, retrospective literature, Dr. Spierer is optimistic. But given her thoroughness and excellent standard of care, and the uniqueness of my situation, she is going to consult with the two most experienced physicians in the country before making a final decision. She’ll be conferring with one this weekend at a conference in Vegas. The other is a former colleague at Sloan-Kettering. She’ll email me her decision. Come on, how great is that?!?! The care provided at CTCA is far beyond outstanding. She also mentioned that due to the small size of the tumor that surgery might be an option. Hey, I haven’t tried that before. We’ll hear the verdict while we’re in Puerto Vallarta, our honeymoon spot.

It’s now Monday evening, April 13. Along with privilege, another recurring subject on my mind has been choices. The ability to make complex choices defines our humanness, just as hope and anticipating the future do. To reject either or, maybe worse, abdicate them to the judgment of another, is to diminish the privilege we have been blessed to receive. For about two years I’ve been intermittently writing a very short story entitled, The Choice. I’ve made quite a bit of progress lately. It’s sort of an upbeat rebuttal to two of my favorite existential works, Sartre’s No Exit and Beckett’s The Lost Ones. (Yes, I once was young and read books like those). My slow progress relates to being patient enough to see how events play out in my life and how I approach and respond to them. I’ve sought to express authentic emotions as best as possible. It makes for a fascinating project. Anyway, here are some more thoughts regarding choices…

“You always have two choices: your commitment versus your fear.” Sammy Davis, Jr.

“You have no choices about how you lose, but you do have a choice about how you come back and prepare to win again.” Pat Riley

“I think we too often make choices based on the safety of cynicism, and what we’re lead to is a life not fully lived. Cynicism is fear, and it’s worse than fear – it’s active disengagement.” Ken Burns

“The talent is in the choices.” Robert De Niro

And one of my all time favorites, “Not to decide is to decide.” Harvey Cox

It’s Tuesday morning, April 14. I woke up at 2 AM and found that Dr. Spierer had sent me an email a little after midnight (!). She had discussed my case with the premier expert in SBRT, who just happens to be who Dr. Weiss worked with during his training. (Another “coincidence,” right?) On my next dosing day, a week from today, I’ll meet with a thoracic surgeon, then with Dr. Spierer to discuss two radiation treatment options, one being more aggressive than the other, but with a higher risk of collateral damage. Three options. Hmmm, I just had to write about choices, didn’t I? This may sound like bad news, but the choices could have been a lot worse – or worse still, a single choice. I’m very pleased that the combination of a chemo drug and immunotherapy isn’t on the table. (Chemo… ick! That remains an option for further down the road.) None of the current options should prevent me from continuing in the clinical trial.

After sleeping on it and giving it thoughtful consideration this morning, I made the appropriate decision: ¡Más cerveza, por favor!

With continued love and gratitude, flavored with the exceptionally good fortune of having all of you in my life,

Jim

p.s. A friend from work and I recently reconnected. He shared this quotation from a young, determined and successful cancer fighter. “We are connected to life by the glue of love. And it is this connection that is so bittersweet.”

 

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