cholangiocarcinoma

[cholangiocarcinoma]

[cholangiocarcinoma]

fucking crying because i thought this instagram reel was cutting edge comedy gold only to realize it is 100% serious… damn maybe i’m being poisoned

[cholangiocarcinoma]

It started with tummy aches. I was out from work for nearly two weeks, couldn’t eat much but it was manageable.

Had the best birthday ever, 26, and ate well that day.

Couldn’t comfortably drink water the following morning. Went to urgent care. They did some bloodwork.

While waiting for lab results I went to see my boss who is also my father as he needed to talk to me. I’d not been in for work in over two weeks. He has to fire me and feels awful about it, there are tears.

While getting fired I get a call from urgent care. My liver levels are rly high and I need to go to the ER right away.

They do all sorts of checking me out. I’m watching Twilight, pleased as punch. They determine I need to have my gallbladder taken out. I learn what a gallbladder is. Text the bestie “brb getting organ removed”

Surgeon says my gallbladder was a rly weird texture and my bile ducts and everybody around there was real angry and inflamed. It’s assumed this was due to the gallbladder needing to be removed.

Within a week I’m turning yellow and can’t eat hardly anything. My bodily functions are the wrong colors. Back to the ER.

My bile ducts are blocked. They do a procedure and put some tubes in there to keep my ducts open. Removed all the garbage that was blocking things and dilate the narrow parts.

Couple weeks later the same issues. They do the procedure again, an ERCP, and replace the tubes.

The tubes are called stents and they need to be replaced about every three months. I miss my appointment for my stent replacement because I test positive for COVID. I have no symptoms.

Nearly a month later and I’m borderline septic. Jaundiced and unable to eat just like before but it’s worse this time.

The stents shifted and got infected. I’m admitted to the hospital and they replace the stents again. I’m referred to a hospital in Seattle for my next replacement because they can’t make it work for me here in town.

The GI team at Seattle VM is amazing and they solve the problem of the shifting stents on the first try. They biopsy the mass that’s been causing the bulk of the issues in my bile duct blockage.

Hey Lexi, it’s Doctor who solved your problems, yeah, it is cancer. Bile duct cancer, cholangiocarcinoma. In the middle of this conversation my brother calls and demands I move my car from his parking spot. I take my opportunity and throw the cancer news at him before I move my car.

Later that night I go to go buy some weed to find my car was towed. From an unmarked spot at my apartment complex. Unmarked also means “reserved” in the eyes of the apartment complex.

I get tons of tests done to better inform my oncology team on what kind of treatment will work for me. It’s not a genetic thing but I don’t believe that considering my grandfather died of the same exact cancer 9 months prior.

I start chemotherapy two months after diagnosis. It would have been sooner but I got COVID for real so we ofc pushed it back a bit.

My oncologist says we’ll start with 6 months of chemo and then see how things respond. I’m on front line treatment at full dosage, two weeks on, one week off. My infusions take about 5 hours and I stress out about what I’m going to eat every time we’re there.

Chemo knocks me out. I sleep constantly. If I don’t get at least 12 hours of sleep I have no energy. Days four and five of my cycle are the worst where I have fully body pain and intense joint pain. I’m given steroids and they help immensely.

I start to not recover enough btwn infusions to follow the schedule. We reduce the dosage by 20% and I am able to handle it way better.

After a year of being on the cis/gem chemo combo I start to get signs of lasting side effects- my ears ringing and being sensitive to sound, my arms and legs being tingly randomly and “falling asleep” often. We drop cisplatin and I’m only on gemcitabine.

My hair starts to fill back in. My infusions take only a couple hours and I’m recovering quickly. I no longer require absurd amounts of sleep just to stay awake and socialize. One of the nurses recommends the chicken quesadilla from the cafeteria. It’s the most delicious quesadilla I’ve ever had and I proceed to order it every week.

I get my hearing checked out after while to see if it improved. It hadn’t. I continued with gemcitabine for quite some time.

I know exactly what is going on when I need my stents replaced at this point and my body is showing symptoms. This time most symptoms are familiar but I can’t eat much at all, even safe foods. I go to the ER in Seattle, my GI doc tries to do the usual stent swap but can’t. My tumor has grown and is pressing on my stomach causing a blockage. My GI doc couldn’t even get her scope past the block.

My GI team explains the options and I pick the least invasive, reversible option. I get a feeding tube put in, an NJ tube. My oncologist is confident that putting me back on the chemo combo will shrink the tumor and allow me to eat normally again.

The feeding tube meant significantly less stress from all the decisions that go into feeding yourself when you have GI issues. Better nutrition after my infusions when I’m usually too tired to make food or only want specific foods that aren’t that great nutritionally. I’m still able to eat solid foods but certain things are uncomfortable to consume. My appetite is confusing and I quickly can go from feeling fine to being so hungry I’m in immense pain and can’t move.

Everyone is constantly surprised that I’m able to eat food by mouth. My nose and sinuses constantly feel intense pressure when the tube is in my left nostril. I can feel it in my teeth. Ibuprofen doesn’t always help enough with the pain.

When the tube is in my right nostril it’s fine and dandy, I don’t even notice it. It’s lovely.

I resume chemo with cisplatin and gemcitabine but this time I’m getting immunotherapy too! My infusions now take about 6 hours.

After three months of having the feeding tube and being on the escalated chemo treatment I’m able to get the feeding tube out.

I have a reputation for wearing bright color outfits that are 80’s inspired and being super into space. It’s been 3 years of treatment.

The hospital redid their menu. They no longer offer the chicken quesadilla. I am at a loss and must now find a new reliable food option that doesn’t require my bf to walk across downtown Seattle. A bunch of the nurses are equally upset by this change.

My bf now has his learners permit and will be able to drive us every week soon. I met him two months before all my health problems started. He takes care of me more than I could ever ask for.