The Power of Hope, Manifested

Another life changing event…brought to you by…Hope

I was 2 months from hitting my 5 year mark since surgery to remove a cancerous tumor from my pancreas. Survival rates for pancreatic cancer patients beyond 5 years is only 13% and for the last 4 years and 10 months, it was managing to stay away…

This past weekend was big! I mean, life-changing big. It was one of the most emotional and spiritual experiences of my life - as of today, I am still processing a lot of it and have had difficulty expressing my thoughts both in words and even in this essay - but here it goes.

On Friday April 25th, as my team in Phoenix, Arizona was preparing for our PurpleStride event to support the Pancreatic Cancer Action Network on Saturday. I had a pre-scheduled appointment with my oncologist that I didn’t want to cancel because it would be another month before I could reschedule my quarterly surveillance scans. I had completed my bloodwork and CT scan earlier that morning. Once analysed, I would meet my oncologist later that day to review the results. I showed up at the Salt River Fields in Scottsdale, to begin our set up activities and worked for a couple of hours before ducking out with my wife to get to the Mayo Clinic.

As we sat in the office, the wait was a little longer than usual and, as usual, I began to fret about what we were about to hear. I was 2 months from hitting my 5 year mark since surgery to remove a cancerous tumor from my pancreas. Survival rates for pancreatic cancer patients beyond 5 years is only 13% and for the last 4 years and 10 months, it was managing to stay away…our last discussion with the oncologist ended with clean results and the hope that surveillance will move to every 6 months depending on this set of results I was about to receive.

My wife and I passed the time with small talk and details of the work we needed to get back to, trying to remain positive until that quiet but familiar knock on the door signaled my doctor was about to come in…smiling as usual he greeted us, looked me in the eye and said the results were great, then, something totally unexpected. ‘I don’t think we need to keep monitoring for recurrence. It’s been 5 years, there has been no sign of the cancer coming back, so it is ok to say you are cancer free’ I sat there in a bit of a daze, I looked at my wife as her eyes welled up with tears, I looked back at him and his smile and mumbled, ‘what does this mean?’ He re-stated, he has no reason to believe the cancer will come back, and I was done with surveillance. Overcome with joy and a little fear, the room filled with emotion…I was CANCER FREE. I trusted this doctor with my life. He was the second opinion I sought when I was told I had about a year to live. 5 years earlier, he convinced me I had a chance beyond that, if I could follow the protocol he laid out…he gave me hope then and now he was telling me I was cancer-free.

CANCER FREE

'How did I manage to get past all of this, how did I manage to beat pancreatic cancer? The answer was one that I had espoused and expressed all along: it was the power of HOPE! '

5 very long years of chemo, radiation, and surgery to remove various parts of my digestive system and a lot of lymph nodes, 5 years of struggling with fatigue, trying to clear the chemo brain-fog and getting my strength back. 5 years of quarterly CT scans and blood work, worrying about recurrence…and now I am done. How the hell did I get here and thank God I did. Still processing all of this, I was struggling to reconcile the swirling thoughts going through my head. I hugged my doctor hard, thanking him for everything he had done to save my life - there are no words appropriate enough to express how grateful I was for him. We left the office extremely happy but silently stunned. In the car back to the event set-up, we talked in disbelief and sent messages to the kids to let them know what we had just heard. Happy, confused and just letting it all sink in…

We arrived back at the event site and continued to pull together with the team to ensure Phoenix PurpleStride would be a great event…but the question kept gnawing at me…how did I manage to get past all of this, how did I manage to beat pancreatic cancer? The answer was one that I had espoused and expressed all along: it was the power of HOPE!

Later that night, I sat down and rewrote the speech I was going to give at the event the next day as the Affiliate Chairperson. Here is an excerpt from that speech:

“…Pancreatic cancer came into my family’s life in October of 2019.

We were devastated when I was told I had about a year to live. At the time, hopelessness pried its way into everything we knew as a family, and the future looked bleak and dark. I started to wander down a very dark path…but then I found hope. I found a medical team that helped me to believe that I had a chance. I found my wife, my family reaching deep inside themselves, working together to do everything they could. I found friends who stood by me and wouldn’t let me quit. Then I found the Pancreatic Cancer Action Network…and I found their stories of survivors, and I witnessed their passion for advocating for patients like me and families like mine. I learned of their support to improve outcomes and support and connect patients to important clinical trials…And then I found something truly beautiful…I found a community of volunteers that gather in their free time, working together, collaborating, coordinating and cooperating to bring us this event…I found families and friends coming together to honor and remember those who weren’t so lucky by calling out their names with love and smiles. I found survivors who use their voice and their energy to ensure others have hope. I found HOPE manifesting itself by bringing me into this world of beautiful humans, who strive and stride to make life more beautiful by fighting the negative impacts of this dreaded disease for all of us. You are all part of a powerful community, that will make a difference for pancreatic cancer patients and their families everywhere… AND WE WON’T QUIT! We won’t quit. We will come together, until everyone listens, to ensure future generations don’t have to be crushed by this disease. We know the power of HOPE”

What is hope?

I speak a lot about how ‘hope’ somehow carried me through the last 5 years, and I think it is necessary to clarify this belief. Hope is not meant to be a simple state of mind to be followed blindly. I believe Hope requires real work to ensure that my reasons to be hopeful have tangible steps and tasks to believe. You can hope to win a race, but if you don’t train, or study the course, or rely on a good coach or have real support behind you, you’re chasing a dream without the work required to actually win. Hope is not simply thinking positively, although it helps. Hope requires you to understand what you’re hoping for. You work to understand and know how to be successful. Having said that, hope is not always enough to change your fate, but when the situation is dire, like a devastating diagnosis, I believe it is a necessary ingredient to at least give yourself a chance. Here’s what I think gave me hope and why I believe it carried me through the last 5 years:

Hope requires a plan: Defining your goal and laying out a course of action.

When I was first diagnosed with pancreatic cancer, I was told that I had a year to live. I sought a second opinion and found myself at the Mayo Clinic with all of my data gathered at the time. My doctor reviewed the information and laid out what he thought was the best course of action: chemotherapy, radiation / photon therapy and surgery to remove the tumor. It was absolutely necessary to shrink the tumor and keep it from attaching to my abdominal aorta. Had it attached, surgery was out of the question and that would eliminate any chance of survival.

The chemo and radiation / photon therapy was debilitating. I had to use every bit of energy and strength I had to get through it all. For 6 months, I showed up as best I could to be infused and blasted with chemicals and radiation. I was constantly nauseous, hyper-sensitive to cold, exhausted but unable to sleep. I was extremely irritable, susceptible to infection (this was during COVID). Just as I started to feel a little better, it was time for more. I had to find ways to nourish my body, even though the thought of food was disgusting. I lay listless for hours trying to keep food down, I tried to read but the chemo-fog made focusing difficult. I had a port surgically implanted in my chest with tubes coming out of it…torture…but it was all part of a plan. I focused on the fact that these steps, each therapy, every day was important to get to the next. If I followed the plan, I could get to the next day and then I would be able to keep following the plan. I would hope to survive and be able to receive more treatments, no matter what they did to my body or my mind.

Be present

I find it easy to be enthusiastic and hopeful about trying to achieve something positive or beneficial. I see the goal and focus on the steps necessary to get there. However, when facing a negative critical issue, problem or even dangerous situation, it is more than easy to slip into a state of self-deprecation. During the first few days of my diagnosis I began to wallow in regret for all the things I hadn’t done in life and that I was going to miss. I began to opine on all of my past mistakes and transgressions: how did I get here? Poor attention to health, lack of stress management or partaking in the most unhealthy activities, fooling myself into believing it was stress management. I should have been a better person, a better husband, a more attentive father and a more honorable son. I should have worked harder to avoid the financial impact of this disease. I went on and on beating myself up for every mistake, every case of bad judgement. All of that was quickly followed by a wild series of ‘what-ifs’ ‘I should have done this or that or not done that or this’. Looking back on it now, it was wallowing in self pity over events that were irrelevant in my current predicament. There was absolutely nothing I could do about any of that now. They were reference points of what never to do again, if I managed to live any longer than expected.

Focusing on the past was only adding to the stress of my situation. I had to focus and be present with what was happening today. I wasn’t dead and each day I was alive was an opportunity ‘to be’ on that day. Despite my physical state, I became grateful for every day because it was an opportunity to enjoy that day. I made an effort to be better with my words, despite what the medication was doing to my nerves. I would focus on how to make things easier for my family whether I lived or died. I tried to express myself to ensure my family knew that I was there in whatever capacity I could be. I focused on the present, stopped dwelling on the past and kept my mind on doing everything and anything I could do today, and hoped to get to tomorrow.

People coming together to spread HOPE

Surround yourself with people who choose to be positive in all ways

The first doctor told me, after reviewing my biopsy and other data, that I had a year to live. The second doctor told me, after reviewing the results of my biopsy and other data, that if we could stick to the protocol, I had a chance to survive…you guess who I stuck with.

Negative people are everywhere, they can’t help it. They may think they are trying to help, but they accepted the fact that I was most likely going to die. I heard that the treatments would be too difficult, that I had to stress about anything I ate or did during my therapy. That the world was unfair and they dwelled on the ‘why this happened’. Some were reticent and didn’t want to talk because they had decided I was not going to survive and that would be painful for them.

In the words of Mel Robbins, I ‘let them’, but I didn’t listen. Instead, I immersed myself in stories of survivors I read on the Pancreatic Cancer Action Network’s site. I took advice only from my doctor that told me I had a chance. I was grateful for the friends and family that came and sat by me for hours as I was pumped full of dangerous chemicals designed to save my life. I read books about people overcoming pain and failure or other devastating life changes to see the other side of the mountain. I read poetry that was grateful for the beauty around all of us and expressed joy for that beauty and for life. I watched stand up comics who made me laugh at the imbalance in the world and relished movies with hopeful themes of overcoming adversity and life changes.

Dream about the treasures that lie ahead

My children were becoming young adults as I was going through this adventure. My youngest was a freshman, two of my daughters were entering their 20’s full of promise and ready to take on the world with their perspectives. My oldest was about to graduate college and had already lined up a nursing job to start the new year and in a relationship she believed was IT! There was so much to look forward to: graduations, marriages, cross-country trips and their living in different places to experience life. Weddings and blossoming careers…and maybe even grandchildren someday. All of this was unfolding and I could have been thinking about all that I would miss, but instead, I was dreaming about all that was to come. My wife and I, with the everyday challenges of life, hadn’t been on a real vacation for some time. I dreamed of the places we would go and the experiences we would have once all of my treatment was over.

I was not ready to give up and the motivation to survive came in the form of all the good that was to come. Life is hard for everyone and no one is promised tomorrow, but without a dream, without knowing that things would be better at some point, no matter how hard it was to get there or how long it took, the longing for new adventures and watching life unfold was fuel to keep me motivated. We watch the headlines and the grievances on our social media feeds, it’s the shit that floats to the top in most cases. We can have optimism subdued or swallowed up by the negativity expressed about our future, but it doesn’t have to be that way.

I chose to focus on the good that was to come, out of the adversity that is always going to be there anyway. There was a lot of life and beauty ahead and experiences to be shared. I had to make it to tomorrow, and I had hoped to be able to witness all of it.

Why I have hope

Coming to a wonderful conclusion

It was hope that brought me here, in front of my laptop, tapping all of this out. On the Saturday after finding out I was cancer-free, we welcomed well over 1,000 people to PanCAN’s PurpleStride which we had been organizing since January. We raised a quarter of a million dollars for the cause. We were able to tell our stories to two local news stations broadcasting live to our wonderful city. Over 50 survivors registered and donated to PurpleStride and 25 survivors attended our event. They shared their stories, providing hope to participants that are currently going through treatment. Families and friends of those who didn’t survive came to honor their lost loved ones, sharing their memories and searching for a better tomorrow for strangers they will never meet. Brilliant purple adorned everyone and everything. The beautiful desert spring morning accommodated all of us comfortably as we walked together, laughing at stories, regaling in the memories, and loving life in that moment. All of us gathered to celebrate and honor all that was around us…and all of us became the manifestation of hope for today and the hope for the future of pancreatic cancer patients everywhere.

I want to thank my family and friends for their unwavering support of my journey fighting pancreatic cancer. I will not stop doing everything I can to improve outcomes and provide hope to all that encounter this vicious disease, and I know they will be right behind me in this fight.

Thank you to the Pancreatic Cancer Action Network for giving me the honor of leading the Phoenix Affiliate and organize PurpleStride, such an important annual event.