Kristi

My story is about myself

This event began on 21 November 2024

The Discovery

Ercp after CT and ultrasound came back negative. I presented with about 4 days of intense systemic itching. Liver function was elevated as was bilirubin. Ercp was performed thinking it was a gallstone that was blocking things up when they found this little bugaboo in the ampula. They staged the tumor at a 1A. About a week later I had my port and chemo started the first week of December. I am 51. I lost my husband 12 years ago to a grade four glioblastoma. My kids are old enough now to understand what’s going on; they were nine and five at the time of their dad’s passing. They are now 17 and 21. The tumor board was split 50/50 on whether to do surgery first or chemo first. I opted to go chemo first in hopes of catching any of the rogue outliers before they had a chance to reassemble somewhere else. I have had three stents because of sludge. But finally in March my gallbladder decided it had had enough and I had to have its emergently removed. I was told by my surgeon that the gallbladder was about four times bigger than normal, 60 cc’s of purulent fluid, and she lost counts at the number of gallstones that came out. 3 weeks later I resumed round six of fulfironox. About 2 days after that I started developing a pain which I thought was an adhesion but turned out to be two abscesses where the gallbladder used to be. I then was sent to international radiology and had two drains placed. I am scheduled for a Whipple on May 19th. And then I will resume chemo, most likely in June. The thing about my tumor is that it has never shown up on cat scan. I have never had any sort of stomach or pancreatic pain. My tumor markers have always been normal. This all presented as gallbladder. I am a bit of an enigma because there’s so much information out there on stages 3 and 4 but not a whole lot on stage one because it’s just not seen all that often so the tumor board really doesn’t know what to do with me. My team feels that the outcome is favorable especially if it turns out to be an ampillary tumor versus a pancreatic. I guess I’ll know more after May 19th.

The Impact of Time

So many people have told me that they are thankful I’ve listened to my body and I knew things weren’t as they should be. It helps that I have 23 years of medical experience as a respiratory therapist. Even though I got out of the profession in 2019 I still know a little about a lot. People need to be an advocate for themselves when the medical community brushes them off. But because my tumor is not visible on CT and that my tumor markers have been normal, my team is also mildly concerned that the tumor is growing and they can’t see it. I might have that rare tumor that produces markers that they don’t look for. We don’t know. But I am clinging to the possibility, albeit low, that they are able to reset everything without having to take a whole lot of extra tissue and that the tumor is dead and I won’t need chemo after this.