Mandy’s Perspective

This is my first entry. I was hoping to write an entry here and there to give a different perspective, a patient’s perspective. 

I was very fortunate to not suffer from anxiety or depression while growing up. I developed some anxiety after my daughter was born, which I figured was normal. It didn’t interfere with my life (it only turned me into a backseat driver for my husband’s terrible driving habits or made flying into a painful experience from gripping my husband’s hand too tightly). Who wouldn’t be nervous when you suddenly become responsible for a new, completely vulnerable life? My daughter wasn’t even 5 lbs when she was brought home. She was smaller than a bag of flour (which I have dropped on numerous occasions… the bag of flour I mean and not my daughter). It wasn’t until I was diagnosed with cancer did I truly understand the depth of those feelings. 

Today, I had an appointment for blood work. I have never been afraid of needles and still am not. I used to let students practice blood draws on me. Everyone must learn at some point, and I have great veins. I was never nervous about letting someone stick me for the first time or letting them try again after missing once or twice. Now, it isn’t the needle stick that elevates my heart rate or affects my sleep. It is knowing that the results could have life-changing implications. Once I know that my blood work is coming, I start to play a game of “what-ifs” in my mind. What if my CA-19 (a marker for cancer that not all with Cholangio produce) continues to increase? Will my liver enzymes be normal or elevated? What if they get higher? Have the ones that were elevated previously decreased at all? How much did they decrease? How long did it take them to decrease? Has my number ever been this high before? What can cause that specific number to be elevated? Do I google the different causes? Of course, I do! Google said that it is likely to be caused by dehydration. Will that answer change if I add liver cancer to the search bar as well? Oh, liver cancer can cause it? Does that mean that my cancer is back? What if my cancer is back? Where is it hiding? Will it be treatable with a targeted therapy? Can I get another surgery or ablation? What if it can’t be treated the way I want it to be? Will chemo work? The list of questions goes on, and I often repeat them over and over in my head. Unfortunately, the blood work can only give indications but never concrete answers. We have to rely on several modalities, none of which are absolute. 

I had a clear scan a month ago. Several different doctors looked at the scans closely, and they paid specific attention to my liver. No one saw any signs of cancer at that point. That does not stop my heart rate from soaring well over 100 beats per minute earlier today. That does not stop my blood pressure from making me look like I have Stage 1-2 hypertension. On my last scan, they found something called a biloma. That is a collection of bile within the liver that is caused by a bile duct leak. They believe that the leak was caused by my ablation. The ablation was used to treat my reoccurrence in August 2021. The collection of bile was getting rather large. It measured close to 10x10x10 cm at the time. They put an external drain into the biloma last week. Now I just have to wait until the bile leak hopefully heals itself (more intervention is in my future if it does not heal itself). In the meantime, I am left wondering what my life will look like next year. I don’t even know what my life will look like next month. 

Next month will be two years since my cancer was officially diagnosed and removed. I would give anything to be able to live my life the way I use to. To be carefree. I would love to go back to the time where I felt comfortable making plans for the future. I would love to be able to have more financial freedom and fewer bills. Cancer is flipping expensive! But cancer has at least given me a gift. I now have a greater appreciation for the mundane. I have learned to love life in a way that I previously did not understand. I absolutely love my life. I now no longer take the small things for granted. As cliché as it sounds, I have developed a new perspective. The mess in my living room no longer upsets me. I now see it as my girls having fun. I get on the floor and play with the blocks instead of worrying about the mess being made. I have enough stress in my life relating to my health. I choose not to stress about other things. 

Update: My blood work was a mix. For the most part, the results were positive. The most amazing thing is that my Ca 19-9 went down for the first time in a year!! It makes me cautiously optimistic. I can only hope and pray it continues to go down!