A Hard Day

John was feeling better this morning but, has had a hard day. I have a call in to the doctor. John is in a lot of pain in his head, neck and shoulders. He is nauseous and has burning in his stomach. He has been running a low grade fever that I am controlling with Tylenol. He told me that taking a shower and washing his hair is taking everything he has to ready for bed. He doesn't want me to put a shower chair in or have a handheld shower head installed because that feels too much like surrender and he wants to keep everything as normal as possible.

He has more complaints today than he has since the first chemo round. John is not a complainer. When he sleeps, he moans. I don't know what to do to help him. The doctor just called back and told me that I have given him something for everything he is complaining about and suggests that John go to bed. I have asked him to do so.

Thank you all for your support.

Breathless and tired

Since the last update, Charles and his wonderful daughters came to help. Charles worked and worked. Every time I turned around, he was doing something that needed to be done. He cleaned out a garage that desperately needed it, he fixed a number of things, mowed front and back, filled a dumpster will trash that has been sitting around. He even brushed Nash (one of the dogs) for about an hour. He helped keep the house clean, it was amazing. Thank you so much, Charles. John followed him around part of the time, wanting to help but ended up just visiting and observing. They left last Tuesday. Seems like it has been a month.

John and I slept after they left. Wednesday we rested, as well. On Thursday, back to Arrington for the next weekly infusion. This one only took a couple of hours. They refilled the pump that delivers the chemo 24/7. This round has been hard on John. He is out of energy, sleeps a lot and is having shortness of breath. I talked to one of the doctors yesterday to see if we needed to do anything else. I was told that if he keeps his fever under 100.5, is keeping everything down (and in), is not dehydrated, he probably wouldn't get any more help coming to the hospital.

During this time, John can do little other than sit in his chair or lie on the bed. He is just really tired. The tiredness, I think is contagious.

We are hanging in.

Comfortable.

It is interesting because once we decided on the doctor here, I have not been researching and I have not looked back. I know that John is where he wants to be. I know Lubbock and am very comfortable here so, here we are.

John watches the work for a while then, has to take a nap.

Family visit

John's youngest son and his 2 daughters are here. Charles has already started cleaning the unattached garage. He is a very hard worker, like John and I have a feeling A LOT of things will be done around here during his visit.

A good day

Yesterday we got up early and were at the Arrington clinic at 8 A.M. After lab work, John was hooked up to the machine that would administer these toxic drugs. He was there for a total of 7 hours, he slept much of the time. I left for a couple of hours to run a few errands. We came home around three. Allison was here to help me sort out all of these new meds meant to help manage side effects. So far, not bad. On day 2 last time he had chemo he was ready to be hospitalized. That is not the case now. He even went to the grocery store by himself today! I didn't think it was a great idea because he would be exposed to lots of other people but he really wanted to do something on his own.

With all of the new medications to manage the side effects, John is doing amazingly well. There is no question that he is very tired and takes lots of long naps but he is not deathly ill. I am sure that the feeding tube is a big part of it. He is running a low grade fever and we are managing that with tylenol.

This afternoon my very dear friend, Johnanne Reynolds and her sister Jan Kireilis arrived at the house with good food!! They made a wonderful salad for me with spinach, strawberries and almond with a delicious dressing. I will have several meals from that. They also brought a couple of huge casseroles that both of us will enjoy. And brownies! Since Charles and his girls will be here tomorrow, having this food takes a lot of worry off my shoulders. It also give us some good nutrition. Thank you so very much Johnanne and Jan. I know you looked at this deed as not a big deal but it is a VERY big deal to us! Our days are so busy just taking care of things around the house and nursing John that it is sometimes a BIG deal to go into town.

Again, we are so relieved to be at home. We are so grateful for all of the wonderful and thoughtful friends. The emails, calls and visits are very helpful.

I am very happy to be reporting a good day.

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.

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.

In Arizona with new phone

We are in Az. Broke down and got an iPhone. Took the laptop to be repaired. Short sentences because I am still learning how to use it. Getting this saved me days of entering info into another phone.

Dr. Tomorrow 11am Az. Time. Will keep you informed.

Pre-Phoenix Update

The last couple of days has been absolutely nuts getting everything together to leave for Phoenix. Since we have to carry on liquid tube food, we had to jump through all kinds of medical and legal hoops to make it possible to load a plane with all we need to have.

John's son, Jeff left today. He was here for several days and it was wonderful. He and his dad had a lot of one on one time, Jeff is a great cook and likes to clean the kitchen afterward, he learned to tube feed John, helped him pack for the trip, mowed the yard and along with other things organized a file for me to have with all the necessary documents for the airlines, the hospital and the hotel.

We leave early in the morning. Debbie and Gary are taking us to the airport. Debbie called earlier to let us know that she had seen on the news that the front of the airport is torn up and we need to go even earlier than planned. They will be here at 7am. For those of you that know me well, this is not going to be easy to get up and ready by then.

With the front of the airport a mess, my metal knee, John in a wheelchair and liquids to be carried on to a plane, I am sure it will be quite an ordeal.

I will make this short, still have lots of packing to do. We don't know if we will be gone 3 days or 3 weeks.

A bit of good news

I am so tired, I need to get some rest. John has had a good day and has eaten two meals with his mouth. First time in weeks.

Oncologist

We finally have an oncologist. We are going to use David Close. He seems to be the only one that is in town this summer. Today he sent word not to be surprised if we end up staying for surgery on this trip.

This week's news

It has been over a week since I have updated. Weekend before last, John was admitted to the hospital. He had not been able to hold down or even swallow anything for so many days, he was very weak. Dr. Williams admitted him on Saturday night. IV's were started immediately and blood-work was taken. We learned that John's blood count had not yet crashed which meant that he could have a colonoscopy. That took place on Monday, Memorial Day. The news couldn't have been better, the PET scan had shown a false positive and there is nothing wrong going on in John's colon.

In addition to the colonoscopy, Dr. Williams installed a feeding tube directly into John's stomach. It is a small tube that protrudes from his midsection. I am now feeding him 4 times per day with a liquid nutrition that delivers him 1900 calories per day. This has been a blessing since he has not been able to eat. His intestinal tract had a difficult time adjusting to the tube feeding and the introduction of food after so many days without but, it has begun to settle down.

Denise (John's daughter) came to visit the following Thursday and stayed until Sunday. She was wonderful help! Nikki Pope came back from Dallas, as well. With the help of Denise, Nikki, Allison Williams and my niece Tammy, we got freezers and fridges cleaned and organized, groceries purchased and meals prepared, all of John's medicines organized by day and time, a list of med times posted in several areas of the house and airplane reservations to Scottsdale for a consultation with a surgeon on June 11th. Our 9 year old Mastiff Lucky also has cancer. Allison Williams is a God-Send. Lucky is also taking chemo and he gets sick with it and will not eat for John or me. Allison comes everyday with something interesting for Lucky to eat. She is cooking him chicken breasts, bringing wonderful bread from different sources and she hugs and kisses on him for an hour or so everyday. Lucky had known Allison since the day he was born and he loves her. I don't know what I would be doing or what shape I would be in if it weren't for the wonderful friends that we have. It was even possible for me to sneak away and have lunch with one of my favorite people, Pat Groves who happened to be in the area. (He and his wife Kathy, live in California.)

There are so many things to do and no possible way for me to do them all alone. I appreciate the help more than any of you know. John's oldest son, Jeff will arrive for a few days tomorrow. John has a list of things he is hoping Jeff with help with like, mowing the yard.

As far as John, he is doing a bit better. The nutrition has made a big difference. He is still loosing weight but, not at the rate he was before the feeding tube. He has had unpleasant reactions to the chemo and it has been very difficult for us both. He had an appointment with Dr. WIlliams for a follow up today and John got out of his scrubs for the first time in a couple of weeks. Bill Williams told John he could eat anything he felt like eating so, John asked me to take him to his favorite Tex-Mex place when we left Bill's office. Well..............he ordered some cheese soup that he was able to take one spoonful. We took it home with us and he ate a little more of it this evening. From the restaurant, we went to get a new cell phone for me. I can't find mine so, I will be spending hours typing in my names and phone numbers! I sure wish I could find my phone.

We are going to Phoenix on June 10th. Our wonderful and close friend Paula Lange and her daughter Jenny, will pick us up at the airport. Jenny lives in Phoenix, Paula lives and hour and a half away in a beautiful mountain town, Pine. They will get us to the hotel so that we can rest up for the appointment that we have with a thoracic surgeon on the 11th. She specializes in robotic and non-invasive surgery. I expect that John will have more tests done there even though his test results and all records from Lubbock have been sent to Mayo. We plan to fly back on the 12th unless the doctor there has different plans for us.

We have a couple that is interested in seeing our house this weekend and I have been slaving over our mesquite floors for two days to have them look their best. We did take the house off the market but, these are people that have been looking in this area and do not want to move until at least Fall. Let's hope that these are our buyers. It will be difficult to make a move with everything else going on but, this huge house and the acre of land, without John's help, is way more than I can do.

I am so relieved that John feels some better. I am guessing that the tumor is decreasing in size since he no longer has pain with swallowing. I don't have to crush his medications and give them to him through the feeding tube any longer. He is feeding the dogs and went out to fill the bird feeders this evening. He sleeps a lot and always feels tired. This is just part of the path to the other side of this thing.

Thank you all for asking and being interested in our drama. Thank you for being in touch with us. It makes a difference.

Scheduling

I will let you know about John's schedule. Right now the plan is to fly to Phoenix on June 10, see the surgeon on June 11 at 10 AM. I am expecting her to order more tests. Until we see her, I won't know any more about that. We do go to see Dr. Williams (gastro) for a follow up on Wednesday.