Fifty (50)

“Birthdays are good for you. Statistics show that the people who have the most live the longest.”—Reverend Larry Lorenzoni

I’ve never been a big birthday person. However, I have enjoyed celebrating some of my more significant age milestones so far—16, 18, 21, 30, and maybe even 40. But somehow approaching the big 5-0 tomorrow seems different; more momentous.

It may sound morbid, but my first thought was “at least now I won’t die in my forties.” Making it to 50 somehow sounds better. At my worst in the summer of 2017, Lorie and I were convinced that I’d never even see my 49th birthday.

I’m not sure what makes turning 50 so unique. Perhaps it’s because I’ve finally settled into my skin, even if I have a hard time recognizing my reflection in the mirror these days.

Or maybe after reading and reflecting on mortality during the past three years, it is comforting to see progress in breaking down the cultural silence around death and dying. For example, in recent years, there has been a slew of books authored by “expert patients.” Doctors, scientists, and writers who are reflecting on their departure and have sought to show us different, kinder ways of ending (Atul Gawande, Paul Kalanithi, etc.).

This is encouraging. Most popular cultural conversations around cancer focus on survivors and miracles. Their stories should be celebrated, but we don’t hear from terminal cancer patients as often—perhaps they are too sick or too busy to tell them. It’s their stories that may help inspire big questions and positive change.

“There are only two days with fewer than 24 hours in each lifetime, sitting like bookmarks astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious,” writes Kathryn Mannix in her book, With the End in Mind.

Between those bookmarks is where life takes place. When dealing with a terminal condition, some people decide to focus on quality versus quantity of life, rejecting medical options that might negatively impact their body image, cognitive functioning, mental health, fatigue, sleep problems, physical functioning, pain, and more. They have made their peace—if not with cancer, then with their living and their dying. They want their remaining valuable time to consist of more than a war against cancer.

This is where I have been since March 2018, with no systemic anti-cancer treatments, such as chemotherapy, during the period. My only therapy has consisted of externally targeted radiation to several painful metastatic sites on my spine and a bisphosphonate infusion to help strengthen my bones. Also, I’ve had radiation aimed at the tumor on my spleen as well as a few mediastinum/thoracic nodes to alleviate coughing.

The good news is that radiation mainly addressed the pain originating from my spine. However, destruction of the bone by the tumor left little remaining support for the L5 vertebral body, which subsequently progressed to a compression fracture and resulting pain. In a few weeks, I have an appointment with a neurosurgeon at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss options for stabilizing the spine. I’m also meeting with my oncologist to review recent CT scans showing growth in the pulmonary and thoracic nodes.

That’s the rub with cancer. There is always something going on; something else to be done. Another fire to be put out. Fortunately, the majority of my issues have been manageable with palliative treatment thus far. Indeed, nothing to stand in the way of some upcoming speaking opportunities or tomorrow’s quiet birthday celebration with Lorie and the girls (and our small petting zoo).

Steak on the grill

We even started my birthday celebration a little early last night. The November evening was cold and dry, which made it possible to use the barbeque one more time this season. So, I grilled some steaks Lorie got from the store, and we had a delicious homecooked meal that everyone seemed to enjoy. Despite my stomach upset and taste issues, I was able to eat about half my usual serving (par for the course these days).

Hopefully, last night is a good omen for what life has in store for me after turning 50. Until then, I’m just going to keep enjoying each day as it comes.

Thanks in advance to everyone for the birthday thoughts and wishes!

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.