Nov 14, 2019 Latest post:
Jan 11, 2020
Sometimes life can abruptly take a turn that was unexpected, even when you were already unsure of where things were going. I had gone to my physician on September 11th to discuss some mild, burning abdominal pain I had been having. I was diagnosed with and medicated for a suspected ulcer at the time, based upon the location, symptoms and stresses that were going on then.
On September 30, 2019 I went to work as normal, but began to feel a new and broader pain in the upper-right abdomen, just beneath my ribcage. I made it through the day well enough, but as the evening wore on at home the pain became greater each hour. Finally, after struggling to medicate with what I had around and trying different positions to find comfort, the pain became more than I could manage. I decided to drive myself over to the ER in Elkhart - an excruciating 35 minute drive. I checked in at just around midnight.
For a trip to the ER, it was a relatively rapid pace for things to progress. The doctor popped in before the nurse could even get to me. Using my pain description and its location as a reference, I was told within the first 15 minutes back in the room that it sounded like gallbladder and I should prepare for it to probably be coming out after they checked for sure with an ultrasound. Sounded like a good enough answer to me. Some meds followed to help alleviate the pain I was in for the remainder of the night. The doctor came in pretty quickly again after the ultrasound was completed and informed me that the gallbladder looked fine. However, there were "abnormalities" showing on my liver, so the doctor then ordered a CT scan of my abdomen and pelvis. A repeat scenario occurred after the CT with the doctor coming in promptly after seeing the results and reusing the same "abnormalities" term along with "lesions."
I was leaving the ER by 4:30 a.m., and had not slept yet. The doctor had informed me that he had contacted one of their oncologists by that time and that I was to show up at that office at 8:30 the same morning and they would work me in. After about two hours of sleep I headed back over to Elkhart to see the prescribed oncologist. I was still pretty upbeat at this point and assumed they'd want to run some other tests or biopsy, only to ultimately find out it was a cyst or something simple like that.
As I met with the oncologist my heart sunk - CANCER was mentioned in the first couple of minutes. I was shown the written ER report he had received and the CT scan images. "This is what good liver should look like and all of this is where you see the cancer. I don't think it started here, though. I want to order a biopsy and PET scan to see what else were are looking at and determine the origin." Shock. Complete shock. As I walked out of the exam room and sat down for a blood draw the words continued to settle in. I tried not to cry as the labs were drawn, but as soon as I walked out of the building and began reaching my car I felt hysterical as I tried to tell my sister on my phone what I had just heard.
A few more calls and tears later my wife, Sara, had already contacted Goshen's cancer team where she happens to work, to get me in with a great doctor there. I was in to see him the next day. In rapid succession I had another CT, liver biopsy and PET scan. The follow-up appointment to get the information came just a few days later. It now had a name, plan and prognosis - CHOLANGIOCARCINOMA. A less frequent form of liver cancer that stems from the bile duct system going through the liver. It was the worst option of the two cancers previously suggested that it could be. With treatment the average expectancy is 9-12 months, only 3-5 months without. A very hard pill to swallow when you are only about to turn 33 in a matter of days and have four little boys back at home. Unfortunately, as she works in Cancer Center as an RN, Sara knew the bleak picture as soon as the name of the cancer was given. I could see it in her face as it hit, whereas my sister and best friend that were in the room and learning along with me the full scale of the situation.
Sara and I, and the rest of our family, have received a lot of support and a lot of inquiries from the various people we know. So many have offered so many ways to help and asked a lot of questions about where we are and what is going on that I finally decided it was probably best to create a one-stop area to get updates from the horse's mouth, rather than relying upon others to dole out tidbits while I hide from my phone some days. Thank you all so much for your continued prayers and support!