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!