Surprise! You have pancreatic cancer!

About a month ago, I learned I have pancreatic cancer. I decided to share my story on my blog so I can process this crap by writing it out and to provide hope or comfort to anyone in the same boat who might read this.

To warn you up front, some of what is shared might be gross but I want to be honest about what is going on. Also, this situation calls for loads of swearing, but I promise to keep it PG/PG-13 max. In the spirit of Farscape, “frell” will replace all f-words.

Symptoms easily dismissed

It all began in February with a loss of appetite and my stomach being off. Didn’t think much of it because it was the exact same feeling I get with stress when it aggravates my small hiatal hernia.

Then my pee turned really dark. Like someone poured tea in the toilet. Thought I was dehydrated, but no amount of water seemed to help.

The next fun symptom was the itching. I thought it was just hives, which I get from stress. But it wouldn’t go away. In fact, it kept spreading. All over. If there was skin, it itched.

Then I noticed my poop. It was pale to the point of being disturbing. When it was the same color a second day in a row, I thought, what the actual hell is going on with my body? Hoping it was all just more stress, I consulted Dr. Google. Dr. Google provided little comfort (liver disease, hepatitis, cancer, etc.) and advised me to consult my physician, so I did.

The parade of docs begins

My general doctor ran tests and found my bilirubin was over 5. For reference, it should be no higher than 1.2. Yikes. Jaundice hadn’t appeared quite yet, but we started keeping an eye out for it.

An ultrasound revealed enlarged bile ducts and a distended gallbladder. So my doc referred me to a surgeon to have my gallbladder removed and told me to make a follow up appointment with my gastroenterology doc. I couldn’t get in to my gastro doc for a few weeks, but that seemed okay at the time.

The surgeon looked at the test results and said, “I don’t think the problem is your gallbladder.” Sweet! I won’t have to get my gallbladder removed. Little did I know what was in store for me.

Surgeon ordered an MRI and it was scheduled for that evening. This should have been clue #1 that shit was getting serious. Clue #2 was he called to get my gastroenterology doc appointment moved up from 3 weeks away to the next week.

After the MRI, the results summary showed up in my electronic medical files app. It mentioned a mass present in my pancreas. Frell. My grandfather had pancreatic cancer, so the possibility of cancer took front stage in my mind.

The gastro doc went over the results and ordered an endoscopic ultrasound (EUS) so they could get better images, as well as a biopsy. She also said the mass in my pancreas was blocking my bile duct causing bile to back up into my system and elevate the bilirubin. To relieve the backup, she ordered an endoscopic retrograde cholangiopancreatography (ERCP) to have a stent placed to allow the bile to drain.

The hospital: an unexpected journey

I went to the hospital on a Monday morning expecting to be there for 5-6 hours. They put me under for the procedure and I woke up in the recovery room. The super nice endoscopy doc came in to deliver the news. The EUS was successful. The ERCP? Not so much. The stent couldn’t be placed because of the blockage. Cue tears.

The bile had to be removed from my body somehow because my bilirubin was now over 15 and jaundice had set in. I was also weak from not being able to eat much and felt like a junkie itching so much. The other option to get the bile out was to have an external drain installed.

In hindsight, the thought of having a drain installed is funny. Makes me feel like a defective sink. At the time, I was horrified. Because being admitted to the hospital would get me in for the procedure faster than going home and waiting, I agreed to staying.

Scary procedure

I have to give props to the doc who installed the biliary drain. He was awesome. He explained that they were going to make an incision just below my sternum then run a tube into my liver and through the bile duct past the blockage into my duodenum. The hope being to replace the tube with a stent in a week or so.

Sure, that all sounded fine and dandy. What I didn’t know was I’d be half-conscious during the procedure. Holy hell, that was freaky. There was no pain, thanks to being pumped full of meds, but I could feel the pressure of the tube being pushed into my belly.

Frell. Me. Running.

I was terrified. But it was done and I wouldn’t have to go through that again. Or so I thought…

The official pancreatic cancer news

The evening of the scary procedure, the endo doc stopped by my room to tell me the results of the biopsy. We already suspected what he would say because of gut feeling and seeing the summary on my electronic medical chart while it was briefly available.

It was indeed pancreatic cancer and the tumor was malignant.

No one ever wants to hear that. Fortunately for me and my husband, we had mentally prepared for this possibility for more than a week. It still sucked to hear. Also in the fortunate category, it seemed to not yet spread. Even luckier, it had blocked the bile duct forcing us to find it when we did because a lot of people never know they have pancreatic cancer until it is stage 4.

At least we knew what we were dealing with and could move forward. The oncology surgeon had already stopped by and explained the Whipple procedure would be performed to remove the tumor then I’d have chemo after. So the plan could now be put into motion.

Ew

After being released from the hospital, I went home with a lovely bag of bile hanging from the tube on my belly. Yes, it was and is as gross as it sounds.

Pro tip: a lanyard with a lobster clip works well to hold up a bile bag and lessen the likelihood of it falling and pulling a drain tube out. The medical staff thought it was a great idea. Props to my husband for thinking of it. (Of course, check with your doc to make sure this is okay for you should you be in this situation.)

The bag of bile had to be drained when it filled up. This was one of those times when I realized I need to give myself credit for being a little stronger and braver than I think I am. I have yet to vomit while emptying this thing, which is a big deal for me.

The bag had to be drained into a container so we could measure the output. So I stood there while my husband held the container and I aimed the bag spout into it. I started referring to the bag and tube as my belly penis because I felt like I was taking a piss standing up. I was assured it is clear I do not have a penis because my aim was terrible.

All was going fine for several days and my bilirubin was lowering a little. But then, the draining slowed and the bilirubin number started going in the wrong direction.

Scary procedure again — with bonus nausea!

I had to go back to the hospital to have the drain checked to see if there was a problem. The nightmare of being semi-awake during the drain procedure was still very fresh, so I was terrified. On top of that, my drain had kicked into high gear again but I didn’t think to drink more water to replace the fluids. Guess where this is going…

The morning of the procedure, I puked before we left the house. I dismissed it as nerves because I was understandably freaked out. At this point, I should have known better than to dismiss any symptom.

I arrived at the hospital and told them I was still nauseated so they gave me meds for it. The drain was checked and the tube was replaced with one slightly larger. This time there was even more pressure inserting the tube and I felt like I couldn’t breathe. At least I was able to verbalize that I needed a break and they doc paused so I could catch my breath.

Back in the recovery room, I hurl again. A hefty dose of meds and a long nap later and I was able to go home. However, if I couldn’t keep anything down, I was to go to the ER. The next morning, I was able to drink an Ensure and have some yogurt. Happy that it was staying down, I stood up. And threw up.

So, off to the ER for treatment for dehydration and possible pancreatitis. After an overnight stay and a few IV bags of fluid, I was able to go home once I proved I could eat and not barf. A couple of days later, and the drain was working well and my number was going back down.

WTF?

All was going fine and then I get a call from my general doc. There was a trace amount of blood in a urine test the week before. Because of this, she said to get checked for bladder cancer.

You are frelling kidding me.

I lost it. Throughout all of this, I had shed plenty of tears here and there, but this was my first massive meltdown of the situation. I felt like a full water balloon poked with a pin.

My oncologist agreed it wouldn’t hurt to get checked just to be on the safe side. So I calmed down and decided if I’m going to have bladder cancer, let’s just have it now and be done with all the cancers.

Then the drain stopped again.

I was about to lose it completely. I was sent for a CT scan to check the drain this time and I thought, well, at least I don’t have to do that nightmare procedure again. Turns out I just had a nightmare time of getting an IV going. After 4 sticks, they finally got it and were able to do the scan. I felt like a voodoo doll. BTW I do not fault the people trying to get the IV going. I have tiny veins to begin with and they have been poked like crazy over the past few weeks.

My biggest fear was a problem would be found that would delay the surgery to get the tumor removed.

Shwew

The CT scan showed no issues and my bilirubin started dropping again in spite of the external drain pretty much stopping. Apparently it was draining fine into my digestive system like it should. So everything is on track for surgery next week.

That’s where we stand at this point. Thank you for reading the journey so far. Right now I’m finding it easier to write about this than talk about it a lot.

I plan to post more as I feel up to it, because there are so many aspects to this whole thing — weight loss, drain care, seeing the effect it has on loved ones — I want to share with others dealing with the same thing.

Until next time, all prayers, positive thoughts, healing vibes are welcome.

More pancreatic cancer posts:

• Getting a lung biopsy
• Cancer Possibly Has Returned
• Scanxiety
• My first Whippleversary
• One-year survivor
• Ring the bell!
• Coping with cancer
• Side quest: Pass a kidney stone
• Chemotherapy is weird
• The Whipple procedure recovery