email sent April 22, 2015

Subject:  A Glowing Response…

… or, What, Me Worry?

Yesterday, I was dosed again and met with three docs, Dr. Weiss, Dr. Spierer (radiation oncologist) and Dr. Goldstein (thoracic surgeon), to discuss the treatment plan for the emerging tumor on my right upper lobe. Dr. Spierer presented the two radiation options I mentioned in my last email – a more aggressive one and a “safer” one. My situation is unique given the location of my tumor and the overly extreme wide field radiation exposure I received two years ago. The body fully heals after about 3 years; I’m at 2 years. Dr. Spierer presented my case to two of the top physicians in this field at a Las Vegas conference and spoke with another by phone. She also studied all of the summary literature available relating to re-radiating lung tissue utilizing this highly focused stereotactic body radiation therapy (SBRT). The more aggressive approach has a much better success rate of obliterating tumors (mid-80s to low-90s percent) than the safer one (about 40-50 percent). And the side effects are not significantly greater. If they occur they’ll show up between 3 weeks and 4 months. Neither treatment option has resulted in death. Dr. Spierer wanted to assess my lung function before proceeding. So at 3:00 a nurse determined that this special procedure is performed at the center and the test was initiated at 4:15 immediately after my meeting with Dr. Goldstein. How impressive is that?! I tell ya, CTCA can’t be beaten for not only the outstanding personnel but also its state of the art equipment and the ability to get things done really fast.

Next, I met with Dr. Goldstein. He specializes in video-assisted thoracoscopic surgery (VATS), a minimally invasive surgical technique. Long story short, the scarring resulting from my previous radiation and the pleurodesis procedure ruled out that option. Open surgery is the only viable surgical option. The procedure is much more demanding and lengthier. I’d risk having a sizable portion of my lung removed, possibly rendering me dependent on oxygen thereafter. I’d receive a drain tube through my chest wall for days, perhaps weeks. (My 2 previous experiences with chest tubes resulted in excruciating pain followed by huge and potentially unrecoverable depletion of lung capacity in the first instance and a pneumothorax in the second. I was dreading the possibility of another such adventure.) Given these circumstances and his reluctance to jeopardize what he referred to as my remarkable health, Dr. Goldstein suggested that I go the radiation route.

I next got an X-ray followed by a lung ventilation and perfusion (VQ) scan to determine the air and blood flow throughout my lungs. So, my lungs were photographed with a gamma camera subsequent to me inhaling gamma-ray emitting radioactive particles. My lungs were photographed again after a solution containing the same type of particles was injected into a vein. These images were basically overlaid onto the X-ray to determine my lung function. Specifically, Drs. Weiss and Spierer wanted to know whether or not the tumor was located in a healthy area of the lungs prior to initiating any treatment. It turns out that the VQ scan was very helpful in slightly modifying the SBRT plan in order to further minimize irradiating healthy tissue.

The verdict is in. I’m going with the aggressive radiation plan: 5 treatments spread at least one day apart, starting in 2 days. I love it! That’s it for the clinical update.

I continue to receive amazing responses to my postings. This is one of the loveliest. “I think you are right… treating each event or sensation as a privilege gives a great outlook on life. My mother is good at this… she is getting old but remains positive because there is always something giving her simple joy each day… particularly the flowering of plants in a garden. I sometimes used to think to myself… ‘so what… it’s just a plant.’ But now I begin to see how valuable it is to her day to day enjoyment of life, and the way others interact with her.” I also like this message because it describes Vicki so very well.

We’ve lost some exceptional friends just within this past month and we have also mourned with close friends who have recently lost others dear to them. As always occurs, the grief, emptiness, and powerlessness overwhelm all else during desultory moments. To try to focus on something else, I turned to thinking about mindfulness… as in being engulfed only in the rhythm of crashing waves without actually listening to the sounds. Or, staring into a flower and becoming enchanted by the shape and colors, rather than contemplating the actual blossom. Then I realized my folly of thinking about non-thinking, laughed to myself, and returned to basking in the rhythm of the waves.

I employed this approach in Mexico to delay pondering treatment choices that would have interfered with the now. So, instead, I enjoyed time with my lovely bride. And when thoughts and feelings about the losses arise, I can better focus on the good fortunes that these wonderful people have bestowed upon me and us.

I’ll finish with this. I was the only passenger on the drive from the center to the airport last evening. The driver and I had spoken at length once before. We picked up where we had left off… the best Chicago-style pizza to be found in Phoenix. Once that was settled we addressed more serious topics. At one point I blurted out, “If I worry about living, I’m dead.” That pretty well describes my attitude.

With continued love and gratitude and thoughts and prayers for the passing of loved ones,

Jim

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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.”