PET/CT Scan

The first week after the diagnosis was beyond difficult. We were basically waiting in limbo with nothing to do but think. Chad was in a lot of pain from his gallbladder surgery and I was running myself ragged trying to handle everything and not break down emotionally. We weren't yet prepared to tell the kids so we had to plaster on happy faces and pretend life was normal. We had to pretend we weren't scared to death.

The follow-up appointment was exactly one-week after Chad was released from the hospital. The goal was to have the PET/CT Scan the Wednesday prior. This required getting approval from the VA and we were concerned if they would pony up the cash for a $17,000 test within a moment's notice. I began reaching out to organizations, looking for answers and potential financial assistance for the PET/CT Scan in the event that the VA denied the request.

There were a few people who responded to my pleas but most were from 'generic' cancer organizations and were unable to assist unless we fit into their specific categories.  It didn't take long to confirm everything I read. Appendix cancer was rare. There were very few organizations that were geared towards this damn disease and it was beyond frustrating. Everything I read was discouraging and the one thing that rang loud and clear was that this is a tricky cancer and is different for everyone.

Towards the end of my search I came across two websites of note that were specifically dedicated to Appendix Cancer and those in a similar family. I reached out and wrote some very difficult letters, asking for help, guidance, anything.

One lady wrote me back and provided a very informative email. Later that evening my phone rang. The conversation that night, put me on a new direction. Tim Wesley, the founder of Beunintimidated, who was also an appendix cancer patient, reached out and provided some much needed emotional support. Here I was crying into the ear of some man I have never met, and he was so caring and thoughtful and really gave me hope. He shared his story and promised he would do what he could to help and connect me to the right people.

I continued researching and continued reaching out to people. The only thing I knew for certain at this point, was that I was going to do absolutely everything in my power to help save my husband's life.

PET/CT Scan Post-Poned

The original scan was scheduled for Wednesday but unfortunately we couldn't get approval for that prior to the consult, so we delayed it a week and continued pushing the VA. My in-laws somehow got us talking to Ed Whitfield's Office, the congressman for Kentucky and they were contacting the VA on our behalf as well to speed up the process.

One week after being released from the hospital, we were facing the surgeon who had the results back from Vanderbilt. He confirmed Chad did have cancer but the diagnosis was slightly different. Chad had two types of cancer. How special can one man get? I went in with some questions and at this point had already basically decided I was getting Chad to a specialist. 

The one area of concern was, since when they removed the appendix they didn't know it was cancerous, that they may have cut the tumor - which could result in cancerous seeds/cells getting into his abdomen. Dr. Swain ordered a second microscopic biopsy on the cut portion. 

I had emailed and called various specialist who are reknown in the field, asking their advice and opinions. So I went into the meeting with our local surgeon with questions and a plan. My new Angels on Earth, Denise and Tim Wesley, put me in touch with Dr. Sardi out of Baltimore who did Tim's surgery. Dr. Sardi had agreed to meet with us and I was bound and determined to make it happen. It would cost me some money out of pocket but there was no way I was putting my husband's life in the hands of someone who has never seen this cancer before. Our local surgeon actually thought it was a great idea - so that was our plan.


PET/CT Scan Approved

The very next day, we had to go to Chad's local VA medical facility in Mayfield to see his Primary Care Physician, Dr. Saxon in an effort to get approval for the PET/CT Scan. Dr. Saxon was absolutely incredible. First and foremost, there were no available appointments for like a month out, so they got us to come in first thing in the morning so he could see us before any of his other patients arrived. Then he personally got on the phone with those who would approve the Scan. Within two hours of leaving that appointment, we had approval. We also had the blood work done for Chad's tumor markers. Things were looking up.

PET/CT Scan and Results

The PET Scan was scheduled for Wednesday and went without incident. I got a couple copy's of the discs and overnighted them to Dr. Sardi's office. Our appointment with them was the following Wednesday and I wanted to ensure they have sufficient time to review the results. The day prior to leaving for our Consult with Dr. Sardi - Dr. Swain (The local surgeon) called Chad to tell us that the scan results were in and everything looked fine. There was some 'activity' around where the gallbladder used to be but they thought that was a result of the surgery.

Next Step - Baltimore.