Jack’s Story

Site created on November 12, 2019


Sometimes life can abruptly take a turn that was unexpected, even when you were already unsure of where things were going. I had gone to my physician on September 11th to discuss some mild, burning abdominal pain I had been having. I was diagnosed with and medicated for a suspected ulcer at the time, based upon the location, symptoms and stresses that were going on then.  


On September 30, 2019 I went to work as normal, but began to feel a new and broader pain in the upper-right abdomen, just beneath my ribcage. I made it through the day well enough, but as the evening wore on at home the pain became greater each hour. Finally, after struggling to medicate with what I had around and trying different positions to find comfort, the pain became more than I could manage. I decided to drive myself over to the ER in Elkhart - an excruciating 35 minute drive. I checked in at just around midnight.


For a  trip to the ER, it was a relatively rapid pace for things to progress. The doctor popped in before the nurse could even get to me. Using my pain description and its location as a reference, I was told within the first 15 minutes back in the room that it sounded like gallbladder and I should prepare for it to probably be coming out after they checked for sure with an ultrasound. Sounded like a good enough answer to me. Some meds followed to help alleviate the pain I was in for the remainder of the night. The doctor came in pretty quickly again after the ultrasound was completed and informed me that the gallbladder looked fine. However, there were "abnormalities" showing on my liver, so the doctor then ordered a CT scan of my abdomen and pelvis. A repeat scenario occurred after the CT with the doctor coming in promptly after seeing the results and reusing the same "abnormalities" term along with "lesions."


I was leaving the ER by 4:30 a.m., and had not slept yet. The doctor had informed me that he had contacted one of their oncologists by that time and that I was to show up at that office at 8:30 the same morning and they would work me in. After about two hours of sleep I headed back over to Elkhart to see the prescribed oncologist. I was still pretty upbeat at this point and assumed they'd want to run some other tests or biopsy, only to ultimately find out it was a cyst or something simple like that.


As I met with the oncologist my heart sunk - CANCER was mentioned in the first couple of minutes. I was shown the written ER report he had received and the CT scan images. "This is what good liver should look like and all of this is where you see the cancer. I don't think it started here, though. I want to order a biopsy and PET scan to see what else were are looking at and determine the origin." Shock. Complete shock. As I walked out of the exam room and sat down for a blood draw the words continued to settle in. I tried not to cry as the labs were drawn, but as soon as I walked out of the building and began reaching my car I felt hysterical as I tried to tell my sister on my phone what I had just heard.


A few more calls and tears later my wife, Sara, had already contacted Goshen's cancer team where she happens to work, to get me in with a great doctor there. I was in to see him the next day. In rapid succession I had another CT, liver biopsy and PET scan. The follow-up appointment to get the information came just a few days later. It now had a name, plan and prognosis - CHOLANGIOCARCINOMA. A less frequent form of liver cancer that stems from the bile duct system going through the liver. It was the worst option of the two cancers previously suggested that it could be. With treatment the average expectancy is 9-12 months, only 3-5 months without. A very hard pill to swallow when you are only about to turn 33 in a matter of days and have four little boys back at home. Unfortunately, as she works in Cancer Center as an RN, Sara knew the bleak picture as soon as the name of the cancer was given. I could see it in her face as it hit, whereas my sister and best friend that were in the room and learning along with me the full scale of the situation.


Sara and I, and the rest of our family, have received a lot of support and a lot of inquiries from the various people we know. So many have offered so many ways to help and asked a lot of questions about where we are and what is going on that I finally decided it was probably best to create a one-stop area to get updates from the horse's mouth, rather than relying upon others to dole out tidbits while I hide from my phone some days. Thank you all so much for your continued prayers and support!

Newest Update

January 11, 2020 - Know When to Hold ‘Em, Know When to Fold ‘Em

Journal entry by Jack Kupke —

Remember those fairy tail stories I mentioned about going to Chicago to get on some great trial? Well, thinking of them as fantasy helps me cope with the anguish and frustration the entire thing turned out to be. 

We started talking to Univ. of Chicago 2 1/2 months ago. It seemed like it was taking a while, but we hadn’t really delved in too deeply maybe until December. Send up pathology slides for them to look at, make a trip up for several tests to be done, etc. recently, and then we continue to sit in silence. I am not here to bash an institution, because maybe my situation was a fluke, but we received no information out of Chicago unless Sara or the local Cancer Center bugged about it. For Sara, this was a daily project, no joke intended. “When should we expect to come up for the screening tests?” “Oh, I guess we could go ahead and schedule those.” “What is the usual time frame from all of this to process?” “Um....” 

I have mentioned my appreciation for Goshen’s Cancer Center and my oncologist here before, but I am sure thankful now. At a follow up with Dr. Kio on Thursday, January 2nd, his frustration had reached a limit. He told us to go ahead and contact them again and/or go up for another appt. Friday, but he was going to get me scheduled for chemo here on Tuesday to be waiting for me if I wanted and was ready. After a weekend and Monday of silence and no responses, it was easy to make the decision to FINALLY get something started inside of me. 

We did let Chicago know that we were going to change paths and go ahead with the standard treatment right now, and did receive at least a reassuring message of them thinking we did The right thing because something had gotten messed up with pathology and they would have had to start that over (aka another few weeks wait). So, this past Tuesday, January 7th, I received my first dose of chemotherapy here in Goshen. It really wasn’t too bad- about the best I felt for a day in a while to be honest. Nausea hasn’t really been a problem, fatigue for sure, but definitely nothing yet that will scare me away from this Tuesday.

While I pray that none of you will fall into the same or similar boat as I have, the fact remains it’s possible or that someone close to you will. I hope and pray that you have the kind of advocates and care representatives listening to you and letting you decide what you really want to to do during that process, not just their thoughts. The emotional, psychological and physical pain I went through during this long wait for treatment was crushing to say the least. The constantly wondering of “when?” Am I taking the right path? Am I missing the chance for something else to start feeling better now? These questions can leave you feeling pretty hopeless or scared, but nothing compares to physically feeling that thing that is wanting to kill you actually growing inside of you. Each new pain or twinge will bring anxiety and fear, often well founded. In the time I sat and waited two tumors doubled, nodes had increased and are applying painful pressure to new areas, and all in the end for nothing. No one knows you or what’s best for you as a whole than you. God bless!

Read More of the journal titled "January 11, 2020 - Know When to Hold ‘Em, Know When to Fold ‘Em"
Patients and caregivers love hearing from you; add a comment to show your support.
Help Jack Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Jack's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Jack

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

Comments Hide comments

Load more comments
Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Requests
Go to Ways to Help
SVG_Icons_Back_To_Top
Top