I was diagnosed with cholangiocarcinoma (CCA) on my favorite holiday: Independence Day, 2018. I had been sick for a long. And chasing doctors to discover what was wrong with me became my fulltime job.
Being my own medical advocate is hard. I knew something was wrong with me, especially since I am in tune with my body. I had been an avid endurance runner. It was my passion. I ran for the United States of America Track and Field and a running club in the Boston area. I loved it. I ran several marathons, including the Boston Marathon. But soon I was sick often, and running became less and less, which meant fewer endorphins in my system and more depression kicking in.
Read more about CCA diagnosis
I started to be constantly exhausted and less interested in my usual activities. I should have been a lot happier at that time as I had just closed on a new home we had built. Instead, I was depressed that I had no energy, and the cycle of addiction returned. As a result, I became depressed due to the alcohol consumption to numb the physical and emotional pain I was enduring. I wasn’t helping myself at all. And I continued to get sicker. So sick, in fact, that even the thought of drinking made me nauseous.
The doctors did several tests, and all results came back simply stating I had sludge in my gallbladder and fatty liver. They continued to blame both on my being an alcoholic. I disagreed because, in my years of being an alcoholic, I was more sober than not. I had lengths of sobriety longer than lengths of being a drinker. I know my active years somehow contributed to my health issues. But I also knew at this particular juncture in my life my alcoholism was not to blame for what was happening to me and my body.
“Sludge?” What did that even mean? They told me all they were going to do was watch it. “Watch it?” “What am I, a fishbowl?” I had no idea what they were thinking. And none of it was going to help me in the least.
I inevitably landed myself in the emergency room on June 26, 2018. I explained my pain and what had been going on with me over the past year to the doctor. He was empathetic and started asking me a list of questions ahead of being admitted to having my gallbladder removed once and for all.
This doctor was moving his head up and down while asking me the necessary questions to get me to say “yes” so, the hospital would admit me. I did what he was trying to persuade me to do. I knew it was the only way I would finally find out if having my gallbladder removed would eliminate all these issues. If only it were that simple.
I had my gallbladder removed. All seemed well until it wasn’t. My gallbladder was removed on June 27 at 6 pm. Dates stick in my mind when they affect my life to the capacity that this has. I was discharged on June 29, I truly believed this was the end of a long illness, and I could recover quickly and return to living my amazing life in my new home.
Then on July 4, I was sick again, suffering from a high temperature and vomiting. “What is going on?” I could not believe I was feeling this way again. I was so confused. I returned to the emergency room, and they looked at my medical chart. The emergency room doctors were also confused. They decided to admit me for observation. Then, the bomb dropped.
Once admitted to a room, my husband ran home to walk the dogs and get some things I may need there. Minutes after my husband left, the gastroenterologist entered my room and sat down. They never sit down. This wasn’t going to be good news. Why on earth did he have to come after my husband left?
“Did anyone call you to let you know the results of your cholecystectomy,” he asked. “Isn’t that your office’s job,” I answered, which I could tell slightly annoyed him, and I was glad it did so as I was very annoyed that he’d even ask me this. “No, no one has called me from your office to tell me anything,” I replied. “Your gallbladder was sent to pathology. I am sorry, you have gallbladder cancer.”
He said a few more things and told me he and an oncologist would return when my husband returned to explain what they planned to do next for my current medical condition. Horror is all I felt. My mind spun with so many questions. But the first is always, am I going to die?
Anyone who is just told they have cancer can relate to that. The gastroenterologist left the room like he just delivered my daily mail and left me with the worst news of my life.