Mayo difficulties

My laptop died and I have acquired another. We have had quite a lot of things happen since we had our first appointment with a Mayo doctor. The first we saw on Wednesday is a thoracic surgeon. Because her last name is so difficult, I will call her Dr. Dawn. She told us that John has one shot at survival and that shot is to move to Scottsdale or Phoenix for 6 or 7 months to receive treatment. Period. That was the beginning of the shell shock. We spent an hour or so with her. She is a native Texan from San Antonio and was trained at MD Anderson in Houston. She is very bright and is fairly young (late 30's-early 40's) and seems to be on top of her game. We talked about many options, types of treatment and highly recommended using Chemo and Radiation therapy together. That is not what had been recommended in Lubbock. (Keep in mind, our oncologist saw us once and went to Egypt for 4 weeks). She spoke again about the small chance of survival and that even if we moved to Arizona for treatment, there was no guarantee of better outcome than if we stay in Lubbock. She is not familiar with the Joe Arrington Cancer Center in Lubbock.

We came thinking (naively) that we may come to have surgery now and come back home for follow up treatment. Dr. Dawn assured us that is not possible. John will need to continue Chemo therapy and possibly radiation for a couple of months before the surgery can take place. She told us that few centers have the machine that is required for this type of radiation and that few technicians could deliver the treatment correctly. I don't think I will go into all of the side effects and complications of the surgery right now but, I will tell you that she didn't mince words and this is going to be difficult regardless of which route we take. When surgery does happen, we will have to be here for about a month, he would be up on the second day and will have to learn to swallow again in an entirely different manner than he has ever done before. We came back to the hotel completely shell shocked.

Once we had a few hours to digest this information, we put in a call to Dr. Close whom may be the oncologist we use in Lubbock. He is out of town (of course) until Monday. Instead of Dr. Close calling back, Paul Anderson the radiologist/oncologist called us and we had a very long discussion with him on speaker phone. He informed us that Arrington in Lubbock has the machine that is required and has recently updated it to a 3.4 million dollar version. He told us that the Arrington Clinic has been using this technology longer than Mayo has. He also assured us that he could deliver the treatment himself and feels totally qualified to do so. He also told us that there a two camps in the research that have equal results. One is to use a strong Chemo without radiation in the beginning so that John's system will be dosed with so much Chemo that any floating cancer cells will be killed. The other research indicates to use a less strong chemo with radiation in order to kill the tumor before surgery and give stronger medication post surgery to address anything that might be left. The side effects of the chemo and radiation are tremendous. I have researched the internet for hours and hours and I have seen what Dr. Anderson says has merit. Both approaches are discussed on all of the sights. Some recommend one, some the other. Dr. Andersen also talked about how much better a patient does at home with family and friends nearby than those that uproot for a long period of time with no large support system.

I don't know if I had written that Allison call us after the doctor appointment to tell us that she had arrived at our house, an hour after we left for the airport, to feed the dogs and to move in while we were gone and had found Lucky, our 9 year old dog, in the back yard, almost unresponsive. She is almost an RN (top of her class) and was a vet tech for many years while she got her BS in Animal Husbandry. She told us that he was white as a sheet. She pulled blood on him and took it to the vet, found that he was anemic and very low in iron and very dehydrated. Long story short, she brought home IV paraphernalia and began to nurse him around the clock. He did better but would not eat. Wednesday night, he died in his sleep, in Allison's arms. She had not left his side, slept on his bed with him and held and cuddled him for over 24 hours. She called very emotional, she had one of Lucky's litter mates, Boss who died a while back and has known the whole litter since the day they were born. Lucky was born to us and was John's favorite dog. This was quite a blow. John was very impacted by Lucky's death. I could hardly feel it. I think there is just too much coming at us and I couldn't feel anything anymore. It seems to me that Lucky waited for us to leave before he made his passing. We could not have given him as peaceful and comfortable a death as Allison was able to do. There is just too much to pay attention to with John's illness and I would not have been able to give Lucky that space to be held by someone that loves him. Allison said that he was asleep and then he just quit breathing. She felt him leave. I wish that we could all be so lucky to die in the arms of a loved one while sleeping.

Our next doctor appointment was Thursday (yesterday) afternoon. We saw an oncologist named Helen Ross. She also insisted that we need to do radiation with the chemotherapy. She told us since he had already started treatment, John would not be a candidate for a trial study. She made some recommendations about the type of chemo to use in addition to what is being administered now. She is also young and was very personable. She has never heard of Arrington. She does know how difficult it would be to move. Dr. Ross is concerned about having a competent team to manage the side effects of the combination therapy. Apparently they are very severe. John and I got back to the hotel around 6:30 AZ time and just stared at the walls and took some phone calls. All of this is beginning to sink in.

When tube feeding time came, John's tube was blocked and we tried to unblock it. Unsuccessful, we put in a call to our whoever it would be oncologist. Before we were called back, I went to the front desk, got a large paper clip and some matches. I sterilized the old fashion way and unblocked the tube.

The phone rang an it was Dr. Figarella (maybe misspelled). He told me that I had talked to him once before over Memorial Day weekend when John was hospitalized but, I don't remember the conversation. Dr. F told me that he and the other doctors were discussing the unfortunate circumstances that have taken place since John's diagnosis and that he was very familiar with the case. He told both of us that John is considered a VIP patient at Arrington because he is loved and respected by so many of his colleagues. He was absolutely NOT in agreement with Mayo's recommendation. He thinks that it is VERY important to attack this disease with aggressive chemo and follow with radiation after surgery. We had a conference call with him for over an hour. I asked him if he were telling me that Mayo was behind on research. He told us absolutely not but told me that he thought the combination was not the way to go with John's case. Need I say how clarifying that was? NOT!!! Dr. F also expressed how much he wished that he had been the doctor to see John from the beginning. He has adequate experience with this particular disease. Guess what? He is leaving for 3 weeks in the middle of July!

Today we had no appointments. After staring at the walls for several hours, I told John that I thought we might need a third opinion and maybe we should go to MD Anderson. I called Lubbock to see if we could get a referral. We talked to a number of people that told us that we could go to 7 places and could get 7 different opinions. We were assured that the team at Arrington has plenty of experience to manage any side effects that may occur. Did I mention that radiation takes place every day, five days a week for 6 weeks? Once we were off the phone, John said that he wants to go home to do treatment, he does not want to go to MD Anderson and that he wants to be with his puppies.

I can't remember whether the surgeon told us that she would not do the surgery without the combo treatment so I called and made another appointment with her on Monday. The radiology/oncologists are in Spain right now (of course) and won't be seeing patients until Tuesday. We see Dr. dawn again on Monday, the R/O on Tuesday and we will go home on Wednesday. We will take the info that we gather here, talk to more doctors in Lubbock, make a plan and start the treatment again. John was supposed to start the chemo again yesterday but, we are here. All of the doctors are in agreement that he should restart the whatever it is treatment within 10 more days.

OK. That is where we are right now. John has had a poor day. He is feeling weaker and is depressed. I think it is all sinking in and the loss of Lucky is very hard on him.

I wish I had good news but, this is what I have.