Back home

We are home. Actually, we came home on Monday. After much discussion over the weekend and talking to other doctors over the phone, we looked at one another and almost at the same time we said that we needed to come home. We are so glad that we did. Mayo is a huge and impressive institution but, neither of us felt that it was the place for John. That may sound crazy to some of you but deep inside, we knew that we would get as good or better care at Arrington. The surgeon as you know, told us that the only place that John could get better was Mayo. If one thinks it out, that statement is pretty inflated. The oncologist spoke with us and told us that we were not approaching the cancer in the correct way because we were treating it as though it were stomach cancer. (Well, it turns out John does have stomach cancer, too!) She looked at her watch several times during the consultation. The attitude told us subliminally that we were another number in the disease machine. We have been told, by a lot of friends and medical people, over the time since diagnosis that we should take a hard look at Dr. Jose Figueroa. We talked to this doctor over the phone one day while we were in Phoenix and I had spoken to him over Memorial weekend before John was hospitalized. Though Dr. Figueroa was not our doctor, he was on call the night we called from Phoenix. He told me that he was familiar with the case and had been talking about it that day with a couple of other doctors at Arrington. He spent over an hour on the phone long distance with us. He is a very aggressive oncologist and has seen many esophageal/gastric cancers. We were even told by one of the PA's of another doctor we were considering, that Figueroa was the man who could help us.

We made the decision on Sunday. We changed our airline reservations, canceled our other appointments and started packing. For the rest of the evening Sunday and until we left the hotel at 2 P.M. on Monday, I asked John a hundred times if he was sure this is what he wanted to do. There was never a doubt in his mind. We took a cab to the Phoenix airport at 2 and expected to fly out at 4:30. We didn't leave until almost 6:00 Phoenix time. We had to change planes in El Paso and we were relieved to learn that the El Paso flight was being held for us. Going through security was a nightmare. I thought I had carefully packed in the manner that the law requires but, wanted to have what we might need if we were held overnight. I packed several personal items that had to go into the trash since the containers were an ounce too large. Since we had the liquid food for John, they went through all of our carry-ons and my purse. Of course, I was patted down thoroughly since I have a metal knee. While all this was going on I told John that all of this was so much fun that we should travel all of the time!! Right now, I don't care if we ever get on an airplane again.

Tuesday we rested. John remarked several times how glad he was to be home with his puppies. The void left by Lucky's absence weighed heavily on him. Allison did such a wonderful job taking care of the house and the animals that it was more than a pleasure to come home. The radiation oncologist that we were set to see Tuesday called us from Scottsdale. She asked if we had changed our mind about treatment. I told her about the facilities that we had in Lubbock and that we had decided to come home. I thought it was very good that she called us.

This morning John had an appointment with the Gastro doc, Bill Williams. There is some redness and soreness around the tube site in John's abdomen. I clean it 3 or 4 times per day but, it still looks a little angry. Bill put him back on antibiotics and told us to come back July 2. If it doesn't clear up, Bill told us that he might have to take it out and put another in. He has concern because of the compromise of sterility during the insertion. If you will remember John, though strapped down, socked Bill in the face and knocked the tube out of his hands during the procedure. It is definite that if this procedure is repeated, John will have a general antiseptic to knock him out completely!

We went to lunch and after 4 bites, John said he was no longer hungry so, we got the food boxed up and went to Lowe's to get more fly traps. (Another story but, the flies are bad right now.)

We had an appointment with Dr. Figueroa at 1:30. Allison met us there and took notes. She agreed to come since my information banks are overflowing and I forget a lot of things. Dr. F spent over 2 hours with us. He was more thorough than any doctor we have seen to date. He showed us the CAT and PET scans in a way no one has before. We could clearly see that this tumor is in the stomach as well as the esophagus. Dr. F explained that about 1/5 of the stomach is involved. Today is the first time we have heard this. Bill Williams told us a couple of weeks back that he wouldn't be surprised if the tumor was also in the stomach but, I am really surprised that the Mayo doctors didn't address this. We saw a number of studies from several different camps of opinions on how to treat this disease. Believe me, there are many, I have been researching for weeks. In the USA, there are only 14,000 people a year that have this diagnosis. It is one of the fastest increasing cancer diagnosed. It is HIGHLY believed to be caused by drinking alcohol and smoking. Like heart disease and many other deadly diseases , smoking, is found to be the highest cause. We talked about chemo only, chemo and radiation, surgery only and every combination. Dr. F was extremely compassionate and told John with tears in his eyes how sorry that this disease has been diagnosed. He told us all that he knew that this disease would visit him or one of his family members someday and that he wanted to help us fight in the best way he knew how. He suggested the most aggressive approach yet and we will start tomorrow. Dr. F is very qualified, has done lots of research and has many published reports and papers. He told us as he left, he doesn't usually see patients on Wednesday afternoon because this is his research day. He made an acception with us. He then talked to Allison for some time about her career options. She has a BS and is top of her class, soon to graduate RN school. She will start PA school in January. He encouraged her and talked to her about not giving up her dreams. We really like this guy. Through all of our search for the right doctor, we feel that we have the right man. I cannot with words, tell you what a relief this is.

The research has shown that with the protocol we will use showed 30% of patients that used this protocol had no tumor to remove surgically after treatment. 14% of the remaining 70% only had microscopic tumors to remove. This study has the best numbers that we have seen. Obviously Dr. F. in on the front lines in research and is not locked in to one way of doing things like we experienced at Mayo. We are so relieved that we have a plan and a doctor that we feel is most qualified. Another big piece of this is the way Dr. F treated John with the upmost respect as a colleague and friend. John is not just another cancer case coming through the door. He told John that doctors don't like to treat other doctors that are familiar because of many reasons but, he wanted to work with John and had every intention of giving him 5-10 years of quality life. My opinion is, even if John doesn't get the hoped for results, he is not just another patient coming through the door. He is considered VIP, right or wrong. I wish medicine considered every patient VIP but since that is not the case, I am grateful that MY husband is so considered.

In the morning, John will undergo 5 hours of IV drugs which includes chemo and steroids. He will be given an IV pump that will deliver chemo drugs 24/7 for 3 weeks. The drug regime is being changed and additional drugs will be administered. He will go back every Thursday for three weeks. The second and third week treatments will only last about 2 hours. He will then take a week off and start the treatment again. After the second treatment by Dr. F, the third for John, a regime of chemo and radiation will start. John will have radiation five days a week for 6 weeks with chemo being administered. At that time, another endoscopy will be done to measure the change in the tumor. At that time, we will arrange surgery. Dr.F. has assured us that he will assist us in finding the best doctor and believes that surgeon may very well be right here in the Hub City. I hope and pray that there is someone here that is qualified. If not, we will travel for that, maybe Phoenix.

John is up and ready, though very tired, is ready to get this show on the road. John, Allison and I have more hope today than we have had since the beginning of this adventure. If anyone can knock this terrible tumor out of John, we feel this is our man.

John's son, Charles is coming this weekend with his two beautiful daughters. We are hoping that they can have a quality visit but, John may be too sick. We will take that as it comes. I am ready for whatever this treatment brings. I just wish we had a cook! Too bad Jeff doesn't live closer. I haven't cook much in years, am out of the habit and don't always think about it until we are hungry. Maybe something will drop from the sky.

Please say prayers, send positive thoughts and energy. We are sure that we have made the best decision. We would appreciate all of your support. We are at peace with how things are turning out. Allison told me that she looked at John many times during our visit with the doctor and said that she saw major relief in his face. God knows that John can use some relief. This year has been too intense for any human being. Especially for a man that has done so much for others and is of such high character.