Jason Reiss

Jason's story

After seven weeks of tests and procedures, I was diagnosed November 22, 2021, and the information was delivered via telephone by a doctor I had never met. I was with my wife, here at home. It was terrifying to hear the news, although by that time, I was relatively sure based on my symptoms and some of the previous tests that I was dealing with colorectal cancer.

After the diagnosis was confirmed, things came at me with dizzying speed: port installation, new oncologist, treatment plan: All of these words I had never heard before and never expected to be applied to my life.

And during the diagnosis process, I watched as a dear friend with the same symptoms landed in the hospital and died 37 days later, before I ever had my first treatment.

The next few months were incredibly difficult, as I was placed on the FOLFOX regimen and the first several treatments left me debilitated, with terrible nausea and other side effects. But we eventually figured out how to combat that and after treatment No. 5 it became much easier to handle (for me, I am NOT the typical patient though).

Today, life is far different. After my initial diagnosis I had 17 FOLFOX treatments, then I switched oncologists and treatment teams to University of Pennsylvania.

I had an HAI pump installed October 20, 2022, then the incision failed after a large hematoma formed atop the pump. That HAI pump was removed, and a second HAI pump was installed on the opposite side November 17, 2022. The incision failed on that one as well, and it was removed February 14, 2023, (some Valentine's Day huh?).

In the process, I did manage to convince my care team to give me four treatments of FUDR although the risk of infection was sky-high. There's a lot more to that part of the story, but it doesn't need to be discussed here.

Since the first HAI was installed and exploratory surgery was performed to look at my liver:

• I've spent 150+ days with an open abdominal wound (and counting, I'm still not completely closed from the second HAI pump on April 4, 2023)
• Nine irinotecan/Vectibix^® treatments
• CEA, which measures in the green for people without CRC.

Currently my disease appears to be inoperable, although most of the tumor material looks to be dead or dying. We're in limbo at this point, but treatment works well enough to allow me to continue my career as a motorsports photojournalist (the guy on the side of the racetrack taking photos of the quickest on-land vehicles worldwide).

There are many more points of my story, but this is the extremely abbreviated version.

Signs and symptoms

Symptoms included rectal bleeding or blood in stool, ongoing change in bowel habits, narrow stools, stomach cramps/bloating/fullness, unexplained/sudden weight loss, and fatigue.

Side effects

Side effects included fatigue, bowel irregularities, mouth sores, chemo induced nausea and vomiting (CINV), pain, neuropathy, skin rashes (skin toxicity, chemo rash), chemo brain.

Jason's advice

It is never, ever too early. If you think something is wrong, go to the doctor! I avoided it for a couple of reasons and wish I hadn't.