Apologies about the length, I didn’t realize how much I have gone through until I wrote it down!

I live in a very rural community so access to docs isn’t the quickest or easiest. And this is a most entertaining journey I wish I never had to take.
My story… I joined Weight watchers in 2020 with the intent of losing 50 pounds in a healthy way and keep it off. It was exceptionally easy for me to lose the weight but since it was no more than half a pound a week there was no concern. About 6 months in I started having a pain in the middle of my abdomen after I ate. My husband, who lost his mom at my age to colon cancer, became insistent that I see a doc. Since I live close to the middle of nowhere, the referral my local doc provided for a colonoscopy took 9 months to even get me an appt. I wasn’t concerned since noone in my family has had cancer and I have no experience with cancer. The GI doc I finally saw told me my pain was just muscular but he would go ahead and do a colonoscopy. Three months later as I’m coming to from the colonoscopy the GI doc tells me all was good but if I really want we can do a CT scan. I’m like d’uh, I wanna know why I’m hurting after I eat. Fast forward to March 17, 2022, 20 minutes after my CT scan I get a call. They found something and want to do a biopsy. I’m clueless, but hubby heard the conversation and lost all color.
Turns out I had a nice little tumor. Well, small tumor but it was/is very intimate with several arteries and a few veins. The only place in the state that does the EUS biopsy is 5 hours away. Not a big deal but they would not return my calls to make an appt (They finally did after I started chemo.) The GI dept called the following Monday and went ahead with a referral to oncology without the biopsy. As luck would have it, hubby’s sister works at University of Washington Medical Center and they got me in a week later. The EUS confirmed it was malignant, and we met with the Seattle Cancer Care Alliance on April 1, 2022. Oh what a fun meeting THAT was! The oncologist kept texting his wife during our appt and pretty much told me to live my life as much as possible and gave me enough oxycodone to kill a horse, even though I told him I didn’t hurt enough for pain meds that strong. He said I didn’t need to meet with the surgical oncologist because there was too much vascular involvement for surgery. We insisted anyway and thankfully, the surgical oncologist was amazing. He used colored pens (I’m very visual) to draw out what the problem was and why nothing could be done AT THIS TIME. Three little words that give hope. You never realize how big a word HOPE is until you need it. The next step was getting into oncology at the closest clinic. Working on two weeks from GI referring me to oncolgy and them not returning calls, the SCCA ended up calling one of the docs in the local oncology clinic and had me hooked up the following week.
Wait… It gets better. There is a huge turnaround for docs in the oncology department. They hooked me up with a medical oncologist who seemed great! Well, sadly, not so much. She was rightfully requested to leave by the hospital after I saw her a couple of times. Turns out she never listened to any of her patients. That was back in April/May. I have only seen a PA since then. They have a tumor board and all that reviews cases each week I guess but she is great and helps any way she can. After we finally started chemo (FOLFIRINOX) we decided to look for a second opinion on treatment. Then we met Dr. Truty. That’s been it’s own little whirlwind, but at least we are still on that wave of HOPE. Mayo has been amazing with answering my questions and squeezing me in to last minute appts.
I have handled the last ten rounds of chemo well. With the 11th I just finished we removed the Oxaliplatin because I began to notice some light neuropathy. I have responded well enough that the tumor has shrunk and my CA19-9s have dropped from 1488 on April 1st to 99 September 20th. Hubby has been home since we found it and has helped me through the exhaustion from chemo, among the other myriad of issues that come with it. I still work when I feel up to it (desk job so it is mostly paperwork) which is a nice distraction.
Currently, we are continuing chemo until I return to Mayo Rochester in Nov to restage. :- ) HOPE!