Steve Hagel: make the most of every day

At 58, Steve Hagel was enjoying an expansive view of life, right up until the day he was told to shore up his affairs and give himself over to a diminished horizon.

“Before I learned I had cancer, my world was as big as I could imagine, and as attainable as I could afford. I know that sounds kind of egocentric, but when you don’t have what they call a ‘longevity limiting condition,’ your world is your oyster, and you can have whatever kind of oyster you can afford. But when you learn you have stage 4 pancreatic cancer, your world shrinks. It becomes the size of a golf ball, full of limitations and restrictions,” said Steve.

Steve has always been the kind of guy who ponders life from a variety of angles, some measured and some obscure. For instance, he shares that during a low point in his 20s, while studying for his commerce degree at U of C, he tried reversing the Gantt Chart (a planning tool used to measure the relationship between activities and outcomes), to study how some of his past actions and decisions affected the major intersections of his life. What he came to understand from this inverted method of reflection was that carefully planned decisions had not always served him well; hence moving forward he vowed to assign greater merit to his instincts.

“I’m not overly religious, and I’m not overly agnostic – but I came to believe that your life goes the way it’s supposed to go. Maybe decisions aren’t meant to be over analyzed, maybe sometimes you go with your gut – your intuition. If we do have a fate, or a destiny, or a path we are meant to be on, maybe the more we fight against it – the less happy we are. But if you go with the flow of the path, follow your intuition, you will feel happier. Your life is going where it’s meant to go,” he said.

With a degree of certainty, and wisdom gleaned from loss and adversity in his childhood, Steve made his way through university and onward to the next milestones on his path. He met and married Cathy and together they raised two amazing kids – a daughter and a son. He worked for a company, started two businesses, played guitar, travelled, and experienced the whole gamut of emotions and adventures.

Life was his oyster, and he was sufficiently satisfied.

Then cancer

Steve’s cancer story is fraught with cracks… the kind big enough to send you plummeting, then scrambling for solid ground.

It begins in 2021 when routine bloodwork indicated that Steve may have had early onset type 2 diabetes. He lost weight in hopes of avoiding medication, but by the summer of 2022 he was put on Metformin and sent on his way. When gastric discomfort was dismissed as a normal side effect of the drug, Steve carried on and over the next nine months various drug adjustments were made, but none addressed the mounting stomach discomfort.

“In April 2023, I went to the doctor and this time I insisted on an MRI. I wanted to rule out that something else might be wrong. I actually had to debate my case. I said I would pay myself – I just wanted a requisition. Finally, the doctor agreed and I went for an MRI,” said Steve.

A marathon of medical missteps, inconclusive MRI results, and a delayed cat scan, culminated in a trip to the ER when Steve’s skin turned unnaturally yellow from head to toe, a few days before the May long weekend in 2023. Following a cat scan, Steve and Cathy were ushered into a side room in the ER and told that Steve has stage 4 pancreatic cancer, that it had spread to his liver and his parthenium, and that there was no surgery available.

In the weeks that followed, Steve had surgery to insert a stent in his common bile duct to relieve his jaundice and pain, and make it easier to eat, followed by an endoscopic ultrasound to see the extent of the cancer and biopsy the pancreas. The insertion of the stent caused acute pancreatitis, which landed Steve in the hospital for eight days as he was in excruciating pain.

Less than two weeks later, he was in the hospital again, this time for 11 days after collapsing on his bedroom floor with a bowel bleed, requiring his wife and son to call an ambulance. Steve and Cathy were introduced to a palliative team and Steve was told he may only have six weeks to live. In a frenzy of shock and grief, and with an urgency to mitigate future stress for his family, Steve collapsed his business and began the full-time fight for his life

It was not until early July that Steve finally met his oncologist, and his first chemo treatment started in July 2023.

Wellspring

Steven’s wife Cathy learned about Wellspring from a friend, and after joining, and accessing the online caregiver support program. She encouraged Steve to look into programs he might find helpful. Steve was slow to respond, feeling ill, and finding medical appointments onerous, but when the couple attended a public music event at Randy O’Dell House, and Steve was introduced to a guitar playing program called Campfire Classics, he decided to give it a try.

“Honestly, it’s been wonderful. I’ve played guitar since I was young, but neuropathy from the chemo had made it hard for awhile. Now that I’m off Oxaliplatin and Wellspring got me playing again, the neuropathy has improved, not in my feet, but it is pretty much gone from my hands. Campfire Classics gives me hope, and right now I need hope. It makes me laugh, it makes me feel good, and the people there are wonderful. When I wasn’t able to go for a few weeks, people from Campfire were reaching out to check on me. It means a lot,” he said.

Present day hope

Fast forward, and Steve is remarkably well; one of the fortunate outliers whose pancreatic cancer is responding to the prescribed chemotherapy treatment. When along the way he experienced extreme weight loss that threatened to derail his treatment protocols, Steve’s family doctor identified that his compromised pancreas was not producing sufficient insulin, hence, the sugar was not getting to the cells in his body. With prescribed insulin onboard, he is now back within his normal weight range.

“Cat scans are all showing tumours are shrinking. There is no new growth and no metastases. My family is coping better I think, and it helps that I’m looking better – my appearance is not a constant reminder that I’m sick,” said Steve.

Steve’s view of the horizon has a new hazy arc – one where he is glimpsing promising research and clinical trials involving biologics and targeted chemotherapy for pancreatic cancer. His optimism is cautious… less emphasis on a cure and more focus on the possibility of a stabilized chronic condition.

Whatever lies ahead, he is committed to making the most of his days. He and Cathy recently returning from a ‘bucket list’ trip to Italy, and he’s planning future trips and events that fill his cup.

“I might be one of the small percentages who lives another 10 years with this disease, or maybe not, who knows. I just have to accept that and make the most of every day. It’s tough to come to the realization that the world isn’t my oyster anymore – regardless of whether I can afford it or not. But I get it. It is what it is. Like the lyrics of the song Dust in the Wind by Kansas: ‘All your money, won’t another minute buy’,” said Steve.

More from Steve:

“The thing about life is, you never get out of it alive. Most people wake up in the morning not thinking about dying. If you’re not sick, you wake up and get on with your day. But any of us could get hit by a bus, or have a stroke; something could happen and our life could be over and we wouldn’t have seen it coming. So really, Ignorance is bliss. But with cancer, I know I have a life limiting condition. It’s difficult knowing you have a timeline. The upside is, I try to make the most of every day, because I know I don’t have as much time left as some people. In some ways, even if I only live another few years, I may have done more in those three years, than some people would think to do in the next 15 years, because they put things off, assuming they’ll live to be 85. If something were to happen to shorten their life, they might have a lot of unrealized hopes and dreams, whereas I’m going to try and realize as many hopes and dreams as I can. That’s how I view the path I’m on.” – Stephen Hagel.