Where Our Story Begins… Introducing Connor and Jen
Thursday, July 18, 2024
We are grateful to be sharing the lived experience of Connor and Jen who have documented their personal journey with pancreatic cancer to help other families cope with the challenges of this disease. Their story began at the end of 2021 and continues now in 2024. Although it has been a tough journey, it has been filled with many memories and experiences, and they hope to give some guidance and hope to those diagnosed unexpectedly at a young age. This blog article is a first in a series of content pieces developed in collaboration with these remarkable people.
On December 24, 2021, after a stressful period of work, Connor had some pains in the upper left quadrant of his abdomen and feelings of fullness. Initially, we took this to be stress, poor eating, not enough sleep. After ten days it hadn’t gone away, so he went to the doctor. Blood test results showed mildly elevated lipase and amylase levels, which can be indicative of gallstones or pancreatitis. Pain continued to increase and a trip to emergency resulted in an ultrasound and CT scan. The CT showed some unusual findings in the pancreas – it looked like there were chronic changes (indicative of pancreatitis), inflammation in the head of the pancreas and there was also thrombosis in some of mesenteric and splenic veins. The findings would suggest this could have been going on years. Although the thrombosis was not typical of pancreatitis, the inflammation was. No mass was found at this stage. As we have heard repeatedly, at 38 years of age, pancreatic cancer was at the bottom of the list (average age of diagnosis is 71).
As a precaution (and due to our heightened concerns about cancer because Connor’s dad had passed away from cholangiocarcinoma in 2021), an endoscopic ultrasound was performed to biopsy some of the tissue in the pancreas. At this point, our GI doctors at St. Mike’s very much felt this was either an autoimmune pancreatitis or idiopathic pancreatitis. The biopsy came back “undiagnostic” (meaning no cancer cells but not enough normal cells either). From January through April, Connor had multiple CT scans, MRIs, trips to ER for pain, three endoscopic ultrasounds and biopsies of the pancreas and a consultation with the Mayo Clinic that we initiated in February.
On March 11, 2022, he was started on prednisone to either confirm or rule out an autoimmune condition – if it was autoimmune, the prednisone would be effective – and fairly quickly. If not, that diagnosis would be ruled out. At this point, we were very much hoping this was autoimmune. Aside from the side of effects of being on an immune-suppressant, Connor’s symptoms continued to worsen, and we continued to tell the doctors this didn’t seem to be the diagnosis. The Mayo Clinic raised alarms in mid-March that they felt that there were still concerns about a malignancy. Armed with this message, the GI doctors ordered the third pancreas biopsy. Just after that, the pain was so severe (think writhing on the floor for 6 hours at night) for two nights in a row that we went into St. Mike’s ER and made it clear we weren’t leaving until the pain was under control and this was figured out.
In the emergency room, an additional CT scan was done, showing that the initial findings had progressed. Tumour markers (from blood tests) which were only slightly elevated in January were now significantly elevated, indicative of pancreatic adenocarcinoma. Additionally, nodes in the peritoneum (in not so medical terms, the sack that holds the GI organs), which were thought to be inflammatory in nature on earlier scans, had spread. As the pancreas biopsies were not confirmatory, a decision was made to biopsy the nodes.
On April 22, 2022, a diagnosis of stage IV pancreatic cancer was received. Although this was the diagnosis that we had spent months hoping would be ruled out by all the tests, after how much pain Connor had been in over the last few months, there was some solace in knowing that now we could start to do something about it. This is not a nice cancer to have but we can say with 200% certainty that Connor is a fighter and has a lot to fight for. Statistically speaking, it’s incredibly rare to have this diagnosis at this age so the plan is to beat the stats on the other side. With his health and support, Connor has incredible strength to fight this.
Connor has approached this disease as only he would. He has only one goal in his mind – to beat this and to be there for his boys. He has approached this battle with his mind, body and soul. He meditates, gets exercise daily, eats well (with some treats!), sees his trainer three times a week, has a cancer coach that he connects with weekly, does acupuncture and massage… the list goes on. He’s also been incredibly clear that he wants to do clinical trials and take an integrative approach to his treatment. We have been inspired by so many exceptional stories and Connor is just that – exceptional.
Recent Comments