The Art of Dying

Last week, I underwent my first CT scan since stopping chemotherapy in March 2018. It would have been surprising for the tumors in my lungs and spleen to remain unchanged in size during this period. Nonetheless, I admit to secretly hoping that there was little or no growth.

Instead, all of my existing tumors roughly doubled in size. In my lungs, several nodules that measured one centimeter in diameter are now two centimeters. Cancer in my spleen grew from two centimeters to four centimeters.

A few new spots also appeared. In particular, in the mediastinum and thoracic nodes near the heart, thymus gland, windpipe, and large blood vessels.

In other words, cancer resumed its growth in the absence of chemotherapy.

However, with a taste of life without the toxic effects of chemo – I don’t want to go back. A point that I made in the recent Forbes article and video The Art of Dying.

In keeping with that theme, I’ve decided to remain off treatment. The obvious result is that cancer will continue to grow unabated. It wasn’t an easy decision, and it wasn’t made in a vacuum.

During today’s appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, we discussed a lot of topics: How quickly will my disease progress? When will my quality of life diminish? How long until I die?

All valid questions, but each very difficult to answer. I already witnessed the perils of making such predictions last summer when I didn’t expect to see my 49th birthday. And yet, here I am – having just enjoyed the best several months since first being diagnosed in late 2015.

When my treatment changed from curative to palliative intent, I knew that cancer would likely claim my life. It didn’t stop me from living. In fact, in many ways it made me appreciate life even more.

Some readers will offer battle/combat analogies. “You can still beat this.” “Keep fighting.” “Don’t give up.”

Fighting words may help some people, but I prefer to embrace acceptance. My patient advocacy efforts, such as raising awareness for the human papillomavirus (HPV) and various cancers it can cause (including mine…), are not made more or less successful based on my disease outcome.

Throughout my life, I did things my way (cue Frank Sinatra). And I don’t plan on changing that now. I feel good and plan on enjoying it for as long as it lasts. Quality, not quantity, of life, is what matters most to me now.

Eventually, my disease will progress and pose a problem. But not today or perhaps even tomorrow. So, until then, I’m going to continue savoring experiences and my remaining time. I’ve had a fantastic life and will continue to greet each new day as a gift.

Complete Response

Cancer - Three Arrows Hit in Red Target Hanging on the Sack on Green Background.

In my prior post, I referenced seeing my head and neck surgeon to investigate recent changes to my voice and swelling in my neck. Although there was nothing suspicious upon visual examination, he wanted to confer with both my medical oncologist and radiation oncologist to determine whether or not an imaging study was warranted. Much to my surprise, I received a call back after the Memorial Day holiday stating that they wanted to move up the date for my first post-therapy PET scan, which was originally scheduled for July 19.

For head and neck cancer, this first PET scan following chemoradiation therapy is a big deal. A “complete response” to therapy based on PET assessment is associated with a high probability of regional control (only 2.3% regional failure rate) and a five year overall survival rate of 79.8% based on long-term follow-up in a large uniform cohort at Memorial Sloan-Kettering Cancer Center (MSKCC, see reference below). With a suspected incomplete response on the first PET scan, the 5-year overall survival rate dropped to 57.0% in the same study.

My PET scan was rescheduled for late in the day last Friday (June 3), which meant that I wouldn’t receive a phone call with the results until today (Monday). It was worth the wait, however, as the report from my PET scan couldn’t have been better. There was no accumulation of the radio tracer in my tonsil, the previously enlarged lymph node, vocal cords or any other area of concern. Sometimes there is inflammation and other artifacts from treatment that radiologists can’t rule out as residual disease and therefore cautious language can be used in the radiology report, which wasn’t the case for me. Additionally, there was a marked decrease in the size of the infected lymph node.

Personally, I’m not a fan of the terms “cure” or “cancer free” – since right now there’s no way for doctors to know with certainty that all of the cancer cells in my body are gone. In fact, some cancer cells can remain unnoticed in the body for years after treatment. So for now I prefer to embrace the phrase “complete response,” which references the disappearance of all signs of cancer in response to treatment.

If cancer cells do come back, it often happens within the 5 years following the first diagnosis and treatment. In this regard, I’m optimistic about the expected 80% 5-year survival rate  – especially when compared to some other aggressive cancers, such as pancreatic cancer, which is associated with a 5-year survival rate of only 8% (American Cancer Society. Cancer Facts & Figures 2016. Atlanta: American Cancer Society; 2016).

I meet with my radiation oncologist in a few weeks and will learn more about how frequently I will need to have follow-up PET scans and other visits. Until then, I’m trying to digest the positive news, looking forward to slowly regaining some control over my life, and appreciating the coincidence that yesterday cancer survivors and supporters in communities around the world gathered to celebrate the 29th annual National Cancer Survivors Day® (June has been designated National Cancer Survivors Month).

Thank you to everyone (far too many to name…) who supported me during this difficult period – but especially my wife Lorie who has been absolutely amazing through all the ups and downs (luvya!).

References:

Int J Cancer. 2013 Sep 1;133(5):1214-21. doi: 10.1002/ijc.28120. Epub 2013 Mar 29.
Long-term regional control in the observed neck following definitive chemoradiation for node-positive oropharyngeal squamous cell cancer.
Goenka A, Morris LG, Rao SS, Wolden SL, Wong RJ, Kraus DH, Ohri N, Setton J, Lok BH, Riaz N, Mychalczak BR, Schoder H, Ganly I, Shah JP, Pfister DG, Zelefsky MJ, Lee NY.

Finding “the” Doctor

Medical time concept. Stethoscope with clock on face, concept for time pressure in healthcare or waiting lists etc.

I felt like too much time had passed since initially discovering the lump on my neck (a little over 2-weeks ago) to the actual diagnosis of cancer, so I promptly began researching experts in the area of head/neck cancer.  Fortunately, my background in the biotechnology industry provided some close connections in the oncology community and I reached out to one of them (Dr. Susan Slovin, an oncologist at Memorial Sloan-Kettering Cancer Center, MSKCC). She referred to me to Dr. David Pfister at MSKCC in New York.  It didn’t take me long to figure out that this was a great fit, as he was part of the team who treated actor Michael Douglas.  Michael Douglas received a diagnosis of stage IV oropharyngeal cancer in 2010 and spoke about his experience at a medical conference in 2014, which you can read by clicking here.  I scheduled the first available appointment with Dr. Pfister and also set up an appointment with another oncologist at the University of Pennsylvania.  I’m not the most patient person in the world, so waiting over a week for initial consultations didn’t sit well with me.  I wanted to know the treatment options and plan – and more importantly, I wanted treatment ASAP.  Every day looking in the mirror and seeing the large lump on the right side of my neck was a constant reminder of the disease.