So it was towards the end of October when I first started getting sick. It was roughly around October 26th or 27th when I started just having the worst vomiting and diarrhea experience I ever had. I had gone into the ER like the day of when it started just to try and get something to help control the vomiting just because it had been a whole day of it. Water would set me off ,Gatorade, any type of food … I couldn’t keep anything down. I basically ended up living in the bathroom.
This went on for about 12 days. Within those 12 days I had gone to the ER 3 times Urgent Care once and they had exhausted every test they could. It was finally on my last ER visit that they decided to do a CT scan and come to find out that they thought was a birth defect of my pancreas. So they ended up doing an MRI to get better pictures of what was going on with what they thought was the first birth defect of my pancreas.
After the MRI results came back they ended up finding that it wasn’t a birth defect of the pancreas but a tumor that was attached to the back of the pancreas. We didn’t know what kind of tumor at the time so we ended up scheduling an endoscopy with a biopsy so I had done that the day after the MRI. In this last ER visit I was in the hospital by myself my mother-in-law and my husband and had to take care of our daughter at the time she still had to go to school and they still had to work.
I was in contact with my family in Oregon keeping them updated on what I could for what was going on with me my. Everyone was worried about me at that time. My mom was ready to jump on a plane and come out there and take care of me but my sister thank God help held her back and said just wait give her some time.
So MRI is done, then day of endoscopy, So endoscopy gets done, they’re like oh it’ll be probably 2 to 5 days before we get any results we’ll give you a call. It looks like your fluid levels are all back to normal everything’s looking good. So we’re gonna go ahead and discharge you and you can go home.
I was thrilled about that I missed my daughter and I missed being home with my people my husband and my mother-in-law my dog. So my husband picked me up and took me home. At this point we are into the beginning of November. All these trips and appointments have been about over a course of 2-ish weeks. In between those weeks I did try and go back to work when I could but most of it and I still I ended up missing work which was unfortunate because I needed the job. I needed the money.
I will say I am grateful for the job I have . It was just part-time at the time because my daughter was going to preschool and she didn’t go until 12:30 in the afternoon and needed to be picked up at 3:00. luckily I was able to take the mornings off and hang out with her and just spend time with her as much as I could.
Now it’s the day after I get discharged… it was Wednesday, November 9th of 2022 and I’m doing my usual thing. I had taken my daughter to school. I had then been in home just kind of putzing around doing things because I was not still up to going back to work yet. It was about 2:45 PM in the afternoon that I get a call from the doctor who did my endoscopy and biopsy and he said he had the results back.
That’s when he told me that it was a neuroendocrine cancerous tumor. And I just fell silent at that point . I heard the word cancer and what do you do. I said thank you for the call and he asked if I had any questions and I told him nope not at this time and so he gave me the phone number of an oncology department out here in Minnesota so I wrote that down. My next thought was to call my husband and ask him when he was going to be home. He answered and asked what was going on and I told him what the doctor had told me ,as I’m crying my eyes out over the phone, he said I will be home in about an hour. I want you to do what you need to do.
At this time it was 3 o’clock and I had to go get my daughter from school. So that’s what I did, I went to get her from school. I also called my sister to make sure that she could get my parents in one room so I could tell them while everything was still fresh.
I really didn’t want to make multiple phone calls at that point but I had told my sister what it was and she said just to kind of carry on at this moment and she’ll get call me when everyone’s available.
I pick up my daughter and I we come home. I find my husband is already there and he just pulls me into a hug at that point and I just start crying. It’s like what it’s cancer what do you expect.
I had my first oncology appointment on the 14th of November and talked to the oncologist there. She explains a lot of things but says due to the type of cancer it is and where it’s located I need to find a specialist who would be able to help operate on me and remove it.
At this time I have no Minnesota health insurance, I still have Oregon health insurance so everything every visit anything that I had to do I had to pay out of pocket for because I could not I didn’t have any insurance to cover it. So I tell her l’ll go ahead where I’m going to go back to Oregon because I still have insurance through Oregon for everything and I got family out there that can help me out.
The doctor went ahead and took care of finding someone out there for me through OHSU and got me the referrals and things that I needed. So the nurses at OHSU reached out to me we took care of scheduling my appointments and things and I talked to my folks and they helped me get plane tickets so I could come out and get my appointments taken care of.
Now around this time we were in December already, and so I had another pet scan with contrast dye on the 8th of December before I flew out on the 11th of December to go to Oregon and talk with the on surgical oncologist and oncologist that I was referred to at OHSU.
Then I ended up flying back to Minnesota on December 13th to be able to work for a little bit before winter break started for the school district and then my daughter and I flew out on December 25th to spend Christmas with my family out in Oregon.
It was a wonderful time out there for us it was very cold very wet the typical Oregon. And then my mother-in-law came out on January 2nd and picked my daughter up and took her back to Minnesota she could go back to school and everything could go back to normal and for a bit.
Then on January 9th was when I had my oncologist appointment and we talked about doing chemo to see if we can get the tumor to shrink because it really was not in a good place for operating on at the time. They were able to prescribe me chemo pills that was one of the newer things that they were able to do for me. We talked about the type the two different types of chemo pills that I was going to be taking and how one is supposed to target the cancer that comes from the pancreatic cells with the type of cancer it was just because of where it was located.
When I talked with my surgical oncologist he went into depth about the biology of neuroendocrine cancer and everything and where it begins and how the neuroendocrine system is everywhere in which three major places really are focused on with the cancer itself. And we talked about the option of surgery but wanting to try the chemo first just to see if we would be able to get it to shrink down.
So with the chemo I did 2 weeks of taking the medication starting one and then starting the second pill on the second week of that. Then it was 2 weeks off of taking any of the medication. That way I could give the medication I had taken a chance to actually work and do its thing.
The first month I ended up staying in Oregon just so I could get that done. And then check in with the oncologist afterwards. But in February I was able to take the chemo with me. I took the the train back to Minnesota so I could visit with my family for a bit. I didn’t tell my daughter about what was happening.
It was kind of a weird thing to actually start the chemo on the train and just deal with that. It was also a wonderful surprise to be back home. I did the two rounds of chemo for the 2 months.
Between the 2 months of chemo, because it was 2 weeks on and 2 weeks off , I was able to take a couple trips back to Minnesota to visit. My last trip out to Oregon ended on May 4th. I ended up coming back to Oregon at that time as we had already talked about having to do the surgery because I had done a final CT scan and the tumor had shrunk but not enough to make me happy.
It would have taken a lot longer with the chemo for it to do much good and I didn’t have that time. Come to find out that part of the insurance that I was on was my mom’s insurance. Since I would turn 26 in May and the insurance would come to an end too. So I really needed to get the surgery scheduled and get it dealt with. I was not ready to wait around for anything else.
On May 4th I went back to Oregon saying goodbye to my daughter and my husband and my mother-in-law telling him that I would see them when I could. And just at that point waiting to have my surgery on the 19th of May.
I missed out on spending my mother’s day with my daughter and I ended up missing out on spending my birthday with my daughter and my husband. So it was very heartbreaking for me.
I did get to hang out with some friends out in Oregon which I was very grateful for huge support system couldn’t have asked for better friends. I had the surgery on the 19th of May, they removed the tumor successfully! There was talk of possible complications and having to do a certain procedure that would have increased my recovery time immensely, and it would have been a hard recovery at that point. But thank God with all the prayers and Good Vibes and support that I got from everybody we did not have to go that route.
My surgeon did a fantastic job everything went well. I had my follow-up appointments after that.I was thrilled that my husband was able to fly out to Oregon so he could support me during my surgery. He was there for surgery day and a couple days after and then he had to go back home. I was so glad that work his work was able to give him time off to come and support me.
Soon I was discharged from the hospital where I only spent 6 days. I was a superstar patient! I did my walking ,I did my breathing everything I was supposed to. I was eating again. Everything was good because of where the tumor placement was they had to check my blood sugar every few hours because it was on the pancreas. They wanted to make sure that nothing had been disturbed with the pancreas and any other organs.
I had all my follow-up appointments, and then I got the okay to go back home! On June 26th I went back home to Minnesota and I have been there since. I was able to be back in time for my daughter’s fifth birthday at the end of June. Then in September I had my first scan since surgery and everything looks clear. At this point I’m waiting for February, that’s when my next scan is. So far everything is looking good.
Submitted by Sarah Bennett