A response to the doctor’s question said that there was a surgery…..A SURGERY…..I stopped reading because I had almost fallen out of my chair. The oncologist told us that there were no surgeries for this cancer. Right in front of my eyes was a doctor who said that there was a surgery. There was HOPE!!!!
I could hardly contain my joy. I quickly printed the screen and went back to the site. Right in front of my eyes was the exact same medical history of my husband. It was looking at a reflection of my husband’s case….appendiceal cancer with metastatic mutinous adenocarcenoma…. expanding girth….yes, this is the same as my husband’s cancer. Best of all, there was a surgery that was called, “De-bulking”.
In the online case history, the patient had the right side of the colon removed as well as other surrounding organs that could be removed. The gelatinous tumors were scooped out of the abdomen by hand. There were pictures of the procedure and the site noted that the procedure was being done at the University of Texas, Galveston.
I was setting out in my mind how we could get to Galveston Texas. But first, I had to call the oncologist and ask him why had he not known of this procedure and why had he not recommended it for my husband.
At that moment I was full of every emotion that a body could experience… joy, elation, hope, did I mention joy,…then the negative emotions hit me. I was angry, no I was passed that emotion, I was enraged. Whatever trust that I had in the oncologist was totally shot. I couldn’t wait until morning to call his office and set an appointment. I wanted answers and I wanted to know why had he not spoken of this surgery.
The next morning before calling the oncologist’s office, I decided to go back to the site and make sure that I had all of the information contained on the web site. I went back through the history on the computer and when I clicked on the URL address, it displayed the message that this was a secure site and, unless I was a professional with a registered password, I would not be allowed to enter. What!!! I was just at this site less than 12 hours ago and now I was not allowed to enter.
In that moment, I was so glad I printed off the screen and I was in awe. If I was not allowed access today, then I was “allowed” to be on that site last night by something or Someone. I knew who allowed me on this restricted site. I knew that God was allowing me to find this information because this was what we had been praying for in that prayer meeting. There would be many who would say that this kind of thing happens all of the time and it was just a glitch in the security of the site. I wasn’t going to listen to anything other than my God, my Prayer answering God had heard my cry and made a way when there was no way.
I gave up on finding a way into that site and called the oncologist office. My husband’s appointment was set for two days from now and I couldn’t wait. It couldn’t get here fast enough for me.
I called our friends who had been praying and I called the kids to share in this moment of joy. I was beginning to learn that when these remarkable things happen to rejoice in the moment. There would be no guarantees that my husband would be able to get the surgery and I knew that was a real possibility. But after having day after day with hope slipping from us, I was going to relax, rest and rejoice in this wonderful moment. The lesson learned through that moment has sustained me. Today, no matter what the circumstances, I try to find “joy in the moment” kind of things. It goes a long way in helping with sanity. My folks would call it, “Counting your Blessings….name them one by one….”
The day finally arrived for the appointment. I made sure that I had the printed information from the “Doctor’s Only” site. I was looking forward to seeing the oncologist’s face when I showed him the printed information. I wanted to see and hear how he was going to explain not mentioning this surgery as an option for my husband’s treatment. It was the first thing that my husband had asked for at our first appointment. He specifically said that he wanted these tumors removed.
In retrospect, the oncologist didn’t say that there was no surgery, but he said that the chemo would act like surgery by reducing the size of the tumors. I couldn’t understand why he would keep this procedure from us. Maybe he thought that we couldn’t afford it and it was possible that we may not be able to afford it, but, nonetheless, we should have had the option presented to us.
By the time of the appointment, I wasn’t as angry and upset as I was when I discovered the surgery. We sat in that sterile like room waiting. My husband sitting on the table and I with the paper in my hand, the doctor came into the room. I felt immense pleasure when I handed that paper directly into the oncologist’s hand. I felt like I had handed him the keys to a miracle.
I explained to the oncologist that I had done some research and I found this web site with this information on it. I stated that we wanted to pursue this surgery and the sooner the better.
He looked kind of funny. He said that this was a controversial surgery and the oncology community was not convinced that this procedure was effective. I stated that we had nothing to loose. My husband’s allergic reaction had removed chemotherapy as an option for us and that he had wanted surgery from the beginning. Why was this not available to him?
When the oncologist saw our determination, he said he knew of a surgeon an IU Med that had been trained in this procedure. He said that he would call and see just what were the possibilities. Of course, we thanked him and left the offices. I felt like I was walking on air. We were one step closer to a medical form of hope. We went home to wait for his call.
In about three days, we received the call from the oncologist for which we had been waiting. Instead of IU Med, the oncologist said that he contacted the surgeon who pioneered this surgical technique and he had sent all of my husband’s information to him in Washington, D.C. The oncologist stated that my husband looked like a good fit for the surgeon’s study and that his office would be calling us. The oncologist’s nurse had called our insurance company and she said that this surgeon accepted our insurance. I was elated. I began working on a way for my husband to get to Washington D.C.
I found a service offered by people who owned private planes. They would fly cancer patients on their planes to treatment centers at no cost. The closest airport for these services was Chicago. Indianapolis didn’t have the kind of traffic to support the service. That wasn’t a problem because we were 4-5 hours from Chicago. That covered the travel part of the quest for my husband.
The next thing on the list was accommodations. My son is a 100% service connected disabled veteran and part of his benefits is housing for medical treatment. This included himself or members of his immediate family. My son and his wife were preparing to meet this part of the problem. My son was finding out which base was closest to the hospital where my husband would be having surgery. My son and his family would be coming with me to DC.
Working on the logistics and accomendations helped to keep me from waiting minute by minute for the phone call from the DC surgeon’s office. Finally, the call came a week after our last visit to the oncologist’s office. A woman identified herself as the surgeon’s nurse and wife. She explained that she needed to qualify my husband to determine his eligibility for this surgery. She explained that they would be removing part of my husband’s colon. We expected this. She then said that my husband would have to have a colostomy. I asked why would he need a colostomy without knowing whether there would be enough bowel for an end to end anastomosis. She explained that it was the surgeon’s policy to remove as much of the bowel as possible. I said that my husband’s tests showed that there was no cancer in the colon. She said that the cancer would invade the bowel so the doctor eliminated it as a possibility by removing as much as possible.
I didn’t like the sound of that. I didn’t believe that you would want to remove an organ because of a possibility that it would be invaded by the cancer. For quality of life, would you not want to keep as many non affected organs so as to remain functional? What this woman said next was something that I liked even less.
The surgeon’s wife said that we needed to pay the surgeon $25,000 dollars up front before he would do the surgery. Twenty five thousand dollars!!!!! Why did we have to pay the money before the surgeon even laid eyes on my husband. She might as well said a million…This was outrageous!!!! It was impossible!!!!