Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. Beth and Sean (Steve's sister and brother-in-law) will be maintaining this site. We appreciate your support and words of hope and encouragement. Thank you for visiting.
On August 14, 2017, Steve was diagnosed with stage 4 adenoTK pancreatic cancer. There is a 5 centimeter mass growing near the head of the pancreas, and 4 additional 2 centimeter spots where the cancer has spread to the liver. MRI images also show swollen lymph nodes, indicating that the cancerous cells may have spread throughout his body (giving him the stage 4 designation).
How we got here/the symptoms: Steve began experiencing symptoms in late winter/early spring of this year. He started having pain in the upper back, minor discomfort at first, and that back pain has gradually become worse over time. He had had a skiing accident last season, where he sideswiped a tree and initially thought the pain was related to that accident. He monitored that injury and sought relief from the pain with chiropractic and massage treatments. All of his body-work practitioners could find no structural or muscular issues, yet the pain remained. The back pain eventually became so severe that it affected his sleep - specifically, he couldn't do it anymore. Lying in a prone position and getting comfortable became impossible.
About 2-3 months ago, Steve started having trouble eating as well. He would get very full, very fast (even after only 4-5 bites of food) and then would have acid-reflux like symptoms. Normally, Steve has a high metabolism and is the one cleaning up the leftovers on everyone's plates at the end of a meal. He modified his diet by eating smaller meals here and there, and cut out spicy or rich foods, in an attempt to quell his sour stomach. Eventually, eating most foods became difficult; he had too much discomfort and struggled to keep anything down. As a result of the insomnia and the inability to eat, he has lost 25 pounds over the last 3 months.
During this time, Steve was checking in with his primary doctor and made a couple of trips to urgent care centers. He went to the ER just prior to a 2-week camping trip in Iceland (mostly to appease our mother, but also hoping to get some relief from these symptoms). Every time, nothing. The reality is that none of these medical professionals were looking for pancreatic cancer, especially in someone so young and in all other ways, healthy. The one other odd puzzle piece to this is that over the winter, Steve had a deep vein thrombosis in his left leg. He sought treatment for that, but again, this didn't lead to any further investigation when taken in isolation. As it turns out, blood clots like these are also a symptom of pancreatic cancer.
Where we are now/the diagnosis: After returning from Iceland, Steve went back to his primary doctor and demanded further investigation, as the pain had become relentless and he knew something was wrong. A CT scan led to an MRI, which led to a biopsy, which led to the diagnosis of Stage 4 adenoTK pancreatic cancer. Doctor Kenny, the oncologist who made the diagnosis, immediately referred him to colleagues at the University of Colorado who are running clinical trials on a new chemotherapy regimen for pancreatic cancer. He also fast-tracked a procedure for Steve to treat his latest symptom, jaundice. About 2 weeks ago, Steve started turning yellow. The jaundice is a result of the tumor constricting the common bile duct leading from the pancreas to the liver. Because his body can't process the bile and bill-rubin through the liver, it's pushing out into his bloodstream and skin. This also results in all-over itchiness, which he's treating with caladyrl lotion and cortisol cream.
Steve's digestive system, specifically the liver, needs to be functioning properly in order for him to start chemotherapy. On August 18th, he had a stent inserted into his common bile duct to allow the proper flow of enzymes into the liver. The procedure went well and his body is slowly returning to its normal color and his itching is subsiding. While in for this procedure, the doctors were also able to do a nerve block on the celiac nerve bundle. The tumor is pressing on this cluster of nerves which is causing the intense upper back pain. He immediately felt relief from the nerve block and last weekend he was able to get a couple of good periods of sleep in a prone position, the first time that had happened in many months.
Unfortunately, the pain did not subside for very long. As of yesterday, his new primary oncologist, Dr. Lindsey Davis, doubled his oral pain medication. He had been at the lowest and most conservative dose, so we have a lot of room to move. We met with Dr. Davis yesterday and learned more about the clinical trial and got a few other things in motion. Steve is taking the weekend to read disclosures and think about the next steps, but is 99% sure he's going to enroll in the clinical trial. Patients who participate in clinical trials have a greater chance of success in fighting this highly aggressive cancer. Steve is keen on the idea that his participation in this research will benefit other people who will face this disease. He is also keen on giving himself every opportunity to fight this cancer. His spirits are high, and he is gearing up for battle. We are all taking our cues from him.
You can learn more about pancreatic cancer from the Pancreatic Cancer Action Network website https://www.pancan.org.
We've found it very helpful as we learn and adapt to our new reality. We will post more resources as we find them and updates will be forthcoming. Thanks for being on Steve's SAG Wagon* and for supporting us on this leg of the journey.
*SAG Wagon - In bike racing, the SAG wagon is a support vehicle that picks up riders unable to complete a road race because of injury, mechanical problem or other mishap. SAG also stands for "support and gear" or "support and grub".