Wow!!!!! Imagine my surprise when I went to my urologist because my urine was dark and they want to check for kidney issues including stones only to be told “We found a mass on your liver”. I quickly followed up with an appointment with my PCP, Dr. Jacob Curtis, and I left his office alone and in shock. I was only 56 and at the time was living with Craig, my husband and my daughter, Mallory (both disabled). I worked outside the home and was their caregiver. It was 3/11/2020. I remember the date well. Not only was I being sent for further diagnostic tests but there was also a new stressor…..Covid.
So my cancer journey was a lonely one as we were in the thick of Covid and restrictions were mounting and I had to go to every Dr. appointment, every lab appointment and every radiology appointment and more…alone. My PCP immediately ordered an MRI which I had on 3/17/2020 and it confirmed my worst fear…”Hepatocellular Carcinoma” mass within segments 4b and 5 and it abuts the gallbladder. Three days later I was having a biopsy which also suggested “An upper gastrointestinal or pancreaticobiliary (including cholangiocarcinoma) source are most likely”. Things were moving so fast but after I did some reading about cholangiocarcinoma I knew it HAD to move quickly. Cholangiocarcinoma waits for no one!
My PCP referred me to Dr Jeffery Hancock at Teton Cancer Institute in ID. Two days later I had my first visit with Dr. Hancock where I had lab work and a PET Scan. The PET scan confirmed I was in for the fight for my life. Alone. “Ill-defined biopsy- proven IHCC within Hepatic segments 4b/5 with minimal increased metabolic activity above that of the background hepatic metabolic activity.” However, I did catch a break …. “No Pet-CT evidence of metastatic disease within the neck, chest, abdomen, or pelvis.”  I knew no metastatic disease was HUGE and meant I had potentially opened the chance to have a liver resection. A video appointment with Dr. Robin Kim at Hunstman Cancer in Salt Lake City, UT confirmed that I would be eligible for a resection. I attended every prep appointment for my resection alone and was dropped at the curb the morning of my scheduled surgery alone due to Covid restrictions. My resection (partial hepatectomy and cholecystectomy (removal of my gallbladder) was about 5 hours long.  Alone and scared I spent 8 days in the hospital after my resection. I was picked up at the door and taken home to recover in Idaho. I then started 8 rounds of Capecitabine in June based on the Bilcap Study for mop up and required several iron infusions during that time. Thankfully my lab work has pretty much stayed within the normal range the entire time. Since then, I have had 2 PET scans and regular CT’s or MRI’s and am happy to say I am currently NED (no evidence of disease).
I did have huge support through prayer of hundreds, had an old high school friend reach out with money early on to cover my first annual maximum out of pocket insurance premium, and had young friends I had worked with do our grocery shopping during chemo/Covid months of 2020.
To this day this has been the most traumatizing experience of my life. I have been to every single appointment, every scan, every lab appointment alone. I was in the hospital alone and cried every single day.
Through my journey with cholangiocarcinoma I met the most wonderful people that I now call family through the Cholangiocarcinoma Foundation and the Cholangiocarcinoma Warrior only FB page. These people mean more to me than they will ever know. I feel like I want to pay it forward in service and love to them because I can as I have been able to be free from signs of cancer (NED) for almost 2.5 years. Cholangiocarcinoma patients are my forever, to infinity family. I spend my days now living a life of purpose and love.💚