How did you discover you had pancreatic cancer?

Frequently it’s a fluke that pancreatic cancer is discovered.

That’s the most frequently asked question I hear. For good reason – there’s no early detection alert system available. And since the pancreas is a well-hidden organ within the body, tumors growing in it stay well-hidden too.

When it’s discovered, it’s usually too late to do much to stop the disease. I don’t like exploring the statistics because the numbers are terrifying for the prognosis of Stage 4 pancreatic cancer. Basically only about 20% live past 1 year. Less than 3% live 5 years. As I approached the anniversary of my 2nd year since diagnosis, I’m joining the 6% of people who are gifted this time. Terrifying!  

I focus on the fact that while the incidence of pancreatic cancer is increasing, the survival rate is also increasing. The five year rate today is based on people who were diagnosed 5 years ago. I’m part of the group of more recently diagnosed people who together are marching towards creating a higher survival rate.

My discovery story: As our lives are played out in a series of stories, my story is both similar and unique to most cancer patients.

I’m not the profile of a person who would develop the disease: smoking, overweight, diabetes, male and African American. None of these apply to me.

I did not have any of the usual symptoms: Pain (usually in the abdomen or back), weight loss, jaundice, nausea, pancreatitis or recent-onset diabetes 

I did have vague symptoms that I thought were caused by an ongoing flu: loss of appetite, change in stool, tiredness.

I also had a ball-bearing size lump in a gland near my collar bone that I mentioned to three different doctors in the year prior to diagnosis. All said to alert them if it changed. It did. 

My discovery gift was that I developed a 24 hour fever just days before Thanksgiving in 2017.  It went away and I was fine. Two weeks later it came back so I decided to seek medical care for this vague, never-ending flu-like crud. I mentioned to the Nurse Practitioner that I just hadn’t felt right for awhile and my ball-bearing lump had grown a twin. 

I could tell something didn’t sit right with her. She seemed to suspect something was wrong. She kept asking and asking if my stomach hurt. I kept answering no…. is it supposed to hurt?? When she left the room to consult, I could feel the start of quiet tears; I knew something was wrong. 

And so the testing began – fast! 

An ultrasound discovered the blocked bile duct causing the fevers, lack of appetite and changes in stools. A blocked bile duct is not uncommon with pancreatic cancer. A ct scan suggested a tumor was hiding in my pancreas. An x-ray revealed a field of small tumors covering my lungs. It wasn’t good news and it had spread. 

So, my journey had begun. I was terrified and overwhelmed as it began. Today, frequently I am still terrified and overwhelmed. But, I’m still here. And for that, I am grateful. I appreciate everyone who has stepped into this journey with me. And I am especially grateful to the nurse practitioner who really listened and believed me. Every day I make a plan for tomorrow and I expect to be here for it. And by the grace of God, so far, I have been.

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This is my blog about living my life with Stage 4 Pancreatic Cancer—End stage. I joked about writing this imaginary blog when I spent a year on a treatment that allowed me only 10 days to feel well enough to live a fairly normal life. (Actually normal doesn’t even really exist for me anymore!) To earn those good days, I spent the previous 10 days living in post-chemo treatment physical hell – that also became normal in a perverse way. I’m also writing to honor those who are diagnosed with Stage Four Pancreatic Cancer. You might live longer than you expect and I want you to have someone who tells you what that’s like. There aren’t many role models for people with this because, well, they’re usually gone. So, this is for you. Maybe your journey will be similar to mine. Actually, it will probably be very different because “everyone is different.” Even still, maybe this will still be a bit of a guide.

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