July 2015 while my wife and kids were visiting family in Florida I stayed home to finish off work projects. Within days of their departure I began to experience a dull throb in the center of my abdomen directly below my sternum. At work, I was quickly becoming scatter brained and forgetful, and when I got home I literally showered and flopped onto my bed in pain. So I called my wife, and she urged me into urgent care. I was given antacid, and told to see my GP in 2 weeks if they didn’t work. They didn’t work. I called my GP the next day and got in ASAP within a day. He smiled saying we were going to have an extraction of my gallbladder and sent me across the street for a CT scan. That was Wednesday. I picked up my wife and kids on Friday, and by Saturday it was just too much. We went to bed and I told my wife I was going to the ER to have my gallbladder out and don’t get up and come down in the morning.. I told the ER doc I had just been scanned, and lets get this gallbladder out its killing me!!! A few minutes later, he came back after looking at my scan and said I had cancer is there anybody you can call. My wife was down in 10 minutes to hear it with me, you have stage 4 colon cancer with metastatic disease to the liver. I asked how many tumors were in my liver and he said too many to count. Shot me full of Dilaudid, and sent me on my way..that began the journey that led me to where I am at today.
Wide spread panic ensued. I called my PCP first thing Monday morning, he hadn’t even seen the scan yet. On the phone, he didn’t really know what to say, other than its cancer, and its bad. They got me into a surgeon quickly, which was great. The surgeon apparently took one look, and told me she was sending me to an oncologist. By this time I was already beginning my research of my disease. I googled the disease, as I imagine most do, and came across a website called The Colon Club. In these comment threads I found quite literally everything and anything I needed to know through years of information passed on by hero’s of the past. Everything from treatments, procedures, likely courses of treatment….outcomes…everyt
My Oncologist immediately filled me full of love and hope. I have been truly blessed with a passionate oncologist, who beat stage 3 breast cancer and has recurrent MS. She is my cancer hero. Her background as an immuno-oncologist was a double blessing. She had come to my small town, tired of the big teaching hospitals, to escape the vast expanses of the big cancer centers, as she deals with her own health. She knew right away I had came across knowledge online, and basically calmed me down with her persona. Hope had started…and it hasn’t stopped. I asked her about my liver, how many really?? She guessed 100. I asked if I could get to NED…she said anything is possible. So boom, within 2 weeks of my diagnosis, currently incurable stage 4 cancer I was getting the Hail Mary cytotoxic chemotherapy, Folfoxiri. In bad shape, I was drugged heavy with Dialaudid, and after infusion 1 made it home.
While I lay there after my first infusion of this very strong medicine, sad, depressed, scared, I began searching for Facebook support groups, of which some were just chaos. As I began the group thing, I was also searching for Hope online, and I came across something I had never tried before..a podcast called The Colon Cancer Podcast. So I listened to my first podcast ever..and Hope really was activated inside. Stories of Hope and Survival! Exactly what I needed to hear. Around this time I was also learning about the benefits of exercise, how it can possibly slow recurrence. I felt I needed to get up and move all of a sudden, maybe this was my ticket!! My second infusion of Folfiri came, and when the pump came off 46 hours later, I loaded up some Colon Cancer Podcasts and began my new favorite hobby…walking. I walked. Slow, very slow. And I sent a message on Facebook to the guy running it to say thanks. His name is Lee, and he helped to save my life, and I’ll always love him for that.
Also right in the mix of my sickbed google searches I came across a blog. I had never read a blog, but this came up i my search so I checked it out. It was this crazy Hopeful scientists named Dr. Tom Marsilje, and he described in his blog his Colorectal cancer journey. That was it. That put me over the top of any bad place I was mentally in. Between the encouragement I received from Lee, and this awesome blog written by a guy so full of Hope, how could I not get up and move!
After 2 rounds of Folfoxiri, I was moved onto Folfox and 5fu…I kept on going…by my 5th infusion, my oncologist had put me on maintenance. My CEA had dropped from the 230s at dx to just 3.5!!! By now, I had found some groups that were well managed with rules, and I liked those. I began to find great friends in Blue Hope Nation and Colontown, as well as what I consider my home group Colorectal Cancer Survivors Unlimited. I had found my friends, who were like me..young, positive, happy! I stated tracking my walks one day on my phone, and I couldn’t believe how far I was going, so I went out and bought a fitbit to be a legit exerciser. I started throwing out invites in the groups to join me on Fitbit, lets walk thru cancer together and step on it!!! Id guess we have around 20 great folks walking together daily in different little groups we all have going together now. I find it best when I see my cancer friends and non cancer friends in groups. Some of the non cancer folks don’t even know who they are against..its awesome!! My last two PET scans have been clean!! Calcified tumors in the liver, and plenty of em, and a dead primary. Ive never had a surgery other than the port. My goal is to get to the other side untouched, and I’m talking trials currently with my Onc, actually have been for quite some time. She enjoys it, and things im nerdy, which I suppose I am. Ive had 4 upticks in a row, however with my CEA, and we decided to beat the beast to the punch and I’ve been through 2 cycles of Folfiri/Avastin and 5fu. Im still walking, smiling and laughing. Im also looking at trials early, so we shall see where my adventure goes. I like the idea of trial jumping, fits my personality. I’ll keep you updated!
All of my fervor has driven me to 5k competitions. Not intentionally. I planned on the UNDY and the GYRIG for the summer, so I began walking faster..and faster. I have won my first two non cancer 5ks walkers. This Saturday will be my first Undy, and I cannot wait to meet others like me! Us early onset folks gotta stick together, and there is just none of that in my small little town.
Ive also began to advocate. I was recently offered an opportunity through the Colon Cancer Alliance to Washington, DC to advocate for small community infusion centers which are rapidly disappearing due to unseen consequences of the ACA. Hopefully cancer isn’t a partisan issue, we know it isn’t, but I don’t think they know from my recent experience. We shall see.
On that note, I hope to grow my advocacy work if the Lord decides that’s what is best of me. I am a man of God, and he looks over me always. I retired out of my union at the age of 44, electrical work no longer a viable option for me due to chemo side effects of the 5fu..my hands are often so cracked I cant bend. But that’s okay, too, I am happier in many ways than I have ever been, and will keep doing my best to be the City on the Hill.