Schedules

I have to tube feed John around 10 am, 2pm, 7pm and 10pm.

Sat night update

Today has been a bad day for John. He has not been able to eat anything but some potato soup that Debbie and Gary brought today. It is bland and John thought it was good. He ate maybe a half cup. He has run fever over 100 degrees and has surrendered himself to the bed. The good thing is, he is sleeping a lot.

Dr. Bill Williams called tonight just to check on things and this is what has been decided from that conversation. Tomorrow I will call the oncologist that I have talked to the past two days. I will ask him to take over John's case. He is from West Texas and he speaks english!! On top of all of that, he is actually in town. He was very helpful to me today trying to decipher all of the medications and what to take for what and when since the labels were unclear. We will ask that John be put on IV at home since he is not getting the nutrition that he needs. Bill made a good point when he said that he couldn't fight the cancer without good nutrition. Since he can't hold it down, we will give it in his veins. That will happen at home. It is so comforting to have John's doctor, Bill check in on us just because and go out of his way to make sure everything that can be done, is done.

Kay and George Buchannan came by tonight. Kay has been John's nurse all of these years. George works in the blood lab at Covenant hospital. He drew blood from John and we will have a count tomorrow. We will also do this on Monday. If all is well and John is strong enough, he will have a colonoscopy on Tuesday to see what is going on in the colon. The prep for the colonoscopy will be oral meds and he has to be able to keep it down.

Dr. Williams and I talked more about the surgery and he is encouraging me to consider Scott and White in Temple. There is an excellent surgeon there and he says that the patient care is absolutely top notch. Scott and White is affiliated with the Mayo Clinics. I will talk to John about this when he is feeling better. We know that Mayo has a wonderful reputation but, all I know about the doctors is what is on their website. We have not run into a doctor here yet that knows a specific surgeon at Mayo or M.D. Anderson. We have been told by two doctors how experienced and wonderful the doctor is at Scott and White.

That's what I know today.

Sat early AM update

I have heard from a number of ya'll today so, I will give the next update. I am doing this not only to inform those that are interested but also for me to chronicle each step. Again, if this is too much information for anyone, let me know and I will take you off the list.

Today John has felt really sick. He told me that he thinks he needs to cut back on the medication because it is making him feel bad! Still trying to treat himself. He has slept most the day and has not been able to hold down anything, even water. We have checked him for dehydration and he is OK on that, blood pressure is good as well as his heart rate.

After many hours of chewing on the PET scan report and realizing that we don't have a Dr. that is in the US at this time, (Dr. Shalaby is in Egypt for 3 or 4 weeks), I decided that I had to have more information. I called and spoke to the on call oncologist, Dr. Cummings, he was not only a Lubbock native (speaks my language) he was also very pleasant and helpful. We talked about the diagnosis, the treatment, the PET scan report coming to us after the chemo and all that I mentioned before. He did say that if there is something wrong in John's colon and rectal area, the protocol of drugs he is on now would also address what may be there. Dr. Cummings said that it was rare to have primary tumors in two totally different locations and said that if Johns blood values don't decrease too much, he could probably have a colonoscopy sooner than June 11. He understood my frustration that we weren't alerted before the chemo so that the colonoscopy would have already taken place. I felt better at the end of our conversation.

Late this afternoon, Dr. Bill Williams, the Gastro Doc called and told me that he had been trying to reach me for hours. ( l left to have my hair cut without my cell for a while today) He had seen the PET scan and had gone over it with Dr. David Close (an oncologist that is part of this big group). Bill told John and me that there are a lot of false positives in PET scans and the only way to know for sure is to do a colonoscopy. Blood work must be done before this procedure and this is a holiday weekend, all the blood labs are closed until Tuesday (other than emergency rooms). He plans to make some calls tomorrow to see if he can arrange to have blood-work done during the weekend, he would like to monitor it to see how it is reacting to the chemo, anyway. If he can find a lab and all is well, he will do the colonoscopy on Tuesday. If we don't do blood-work until Monday, the colonoscopy could take place on Tuesday. He said the sooner we do it, the less likely his values will drop. I am so grateful to Bill Williams. This guy is an incredibly compassionate and "plugged in to the situation" Doctor. I expect we will hear from him sometime tomorrow.

He also said that it is very unlikely that there is another primary tumor in the colon or rectum. He said that anything is possible and John may be the first one to have that situation but, he highly doubts it. I trust him, he tells it like it is.

John is tucked into bed, sleeping soundly and hopefully resting in a healing sleep. I am expecting a better sleep tonight since talking to these Doctors this afternoon. I have better information and I have a very attuned Gastro guy that is staying on top of this. We may have to switch Oncologists. I am not sure that I will trust him. Plus, he is Egyptian and it is difficult to understand what he is saying. I need to hear and understand every word.

OK, I am going to make an attempt at sleep now. Thank you all for your concern and hopefully today will be the only bad day Sweet John has.

Friday update

Yesterday we went to the cancer center for John's first chemo session. This took about 4 hours and he slept through most of it. I, on the other hand had a total melt down crying and did not sit with him so that he wouldn't see how I was reacting.

We had not seen the PET scan report yet, so I used some of my meltdown time tracking it down. ( figured people were used to seeing others sobbing in a cancer center, so I just continued to attempt to take care of business), The oncologist has left town for 3 weeks and did not give us the report before he left. His PA was not available to show us the report until John had just finished his treatment. I was hoping to see it on my own, without him but it didn't work out that way. The scan shows suspicious activity in his colon and his rectal area, as well. Had we known this Monday, when the report came in, we could have made an appointment for John to have a colonoscopy before yesterday. Now that he has had a treatment, we have to wait a week to check his white cell count to see whether he can withstand the procedure.

I asked whether the same drugs are used to treat the colon and rectal and esophagus. They are not the same so, if there is activity, it is not being addressed, at this time. Dr. Shalaby's office has set up an appointment to check John's blood count next Thursday, immediately before we attend a cancer class. His office called to tell me that they had set up an appointment with Dr. Bill Williams for a colonoscopy on June 11th which is the day before his next chemo treatment. I have a call in to talk to Bill. He is the fellow that diagnosed the cancer in the beginning and waited to tell us until after the retirement party. I hope he will call me today.

After treatment yesterday, John and I went out to eat and he had some mild Thai soup. It set well with him and he felt normal yesterday and last night. Today, he is wiped out and is sleeping in his chair. He was not able to hold down his breakfast. It is before noon and that is the update so far.

If you are on this list and do not want to be, please let me know and I will gladly remove you. I don't think there will be a lot of cheery news as time goes on and I totally understand if you don't want to keep up.

Short update.

First chemo day. John did much better than I did. I will fill in details later.

Today and Tomorrow

Today we went in to have a port inserted. It went well and John ran errands on his own this afternoon. Tomorrow at 1PM he will undergo his first chemo session.

I spent time researching a doctor that would be qualified to perform surgery in August. I spoke with several people at the Mayo Clinic in Scottsdale and learned that there are two doctors there that could do the job. Dr. Louis Lenza and Dr. Dawn Jaroszowski. Dr. Dawn in qualified to do this surgery by non-invasive procedures. Both are available on August 14th, which is the projected date. The only way to contact the doctors directly was to have John's oncologist make the first call. Dr. Shalaby (John's oncologist) is leaving for Egypt tomorrow and will not return for three weeks. When I spoke with him and told him the situation, he called Mayo and called me back to tell me that Mayo should be calling me directly. We don't know all the details yet but, if non-invasive is available, that is definately the way we want to go.

Tomorrow while the treatment is going on, I will sign papers that will release John's records to Mayo in Scottsdale. There are location options but, it is easy to get to Arizonia from here and we have a good support system there.

If I repeat myself sometimes, please forgive me. My brain is not at it's best these days.

This is the latest.

Tuesday Update

To update those who do not know, John goes in the morning to have a port placed in his chest. On Thursday we go for the first round of chemo. He will have 3 rounds of IV chemo 3 weeks apart, in between he will be taking oral chemo. We expect to schedule his surgery around August 14 which will probably take place at Mayo Clinic in Scottsdale, AZ. Following surgery, the plan is to repeat the chemo process another 3 times, 3 weeks apart.

He is tired but is up to the task. The doctor informed us not to expect severe side effects from the treatment. I sure hope he is right. We are taking it one day at a time.

That is all for now.

Doggy woes

Stacia is miserable and it is time to let her go. Lucky is still doing well and until he starts to go downhill, he stays. Lil has recovered from her leg wound and us doing remarkably well, too. So, I take one day at a time and know that my energies much go toward John and keeping both of us sane.

First Official Update

I have organized a list of people who have shown interest in what is happening with John. Some of you already know this and some don't. This will be my first update to the group.

We saw Dr. Cruz on Monday, he was absolutely wonderful. We spent at least an hour with him. He explained that the chemo can be done most likely, outpatient. He will have a port inserted and sometimes he will be on an IV at home. He will go through 2 or 3 rounds of chemo approximately 3 weeks apart. There will be upper GI scope procedures in between the chemo to monitor the tumor response. Dr. Cruz said that many of the side effect of chemo can be controlled other than hair lose. John has a beautiful head of white hair and I know that is bothering him. We will deal with that somehow.

Dr. Cruz explained to us that he is not the best oncologist for us to see and is sending us to one of his partners on Monday. John will have a PET scan done on Friday. We will hear the results when we see the new oncologist. I will let you know the outcome of that visit.

In two or two and a half months, the tumor should be shrunken and we will then prepare for surgery. My sense is, we will go elsewhere for the surgery. At this time (it could change) we are leaning toward Mayo in Scottsdale. We have a strong support system in Arizonia which does not exist in any of the other locations of Mayo or in Houston at MD Anderson.

My dear friend of many years, Pat McAfee and her daughter are coming to help us with chores and organization. The daughter, Nikki will be here today. Pat will be here Friday. I am very grateful for that sense we have a lot of paper work, party left overs for the memory book and other things that need to be done. They are bringing work clothes and plan to jump right in.

I want to thank you all for your thoughts and prayers during this time. John is not in pain now, he has little appetite and has lost a lot of weight. He does keep down what he does eat, now. He is still doing things around the house and in the yard though, he tires quickly and that bothers him. He is sleeping a lot, which I think is good for him.

We are hanging in here and so far, so good.

More cancer than anyone deserves

We have a PET scan set up for Friday and will see a second oncologist on Monday. We are now talking about Mayo Clinic, as well. I am sure that we will travel for the surgery. It is still up in the air whether the chemo will be here or out of town but, leaning toward home.

Stacia was diagnosed with lung cancer today so, I have 3 cancer patients under our roof. We will probably let Stacia go soon. I want to do so on Thursday. John is now second thinking it. I feel that he is heavily identifying with her and is afraid to let her go thinking that if she dies, he will too.

I have a close friend Pat, that lives in Dallas. When I emailed to tell her about John, she called and asked when I wanted her here. She didn't ask IF only WHEN. Her 27 year old daughter is between jobs and is flying in tomorrow. Pat will be here on Friday and both will stay until Sunday afternoon. They will help me muck through my desk, get things organized that we gathered at the party, help me finish planting flowers and generally help me think and function. I am so grateful that they just said they were coming. I need to get more organized before the treatment starts.

We are taking your advice on getting multiple opinions. I know that we have a hell of a year in front of us but, I feel that John will come through this. I just wish he had more of an appetite. He is disappearing.

Ultrasound results

The scope and ultrasound showed that it is a class 3. The size is about 1" X 1.75" and is located just where the esophagus and the stomach meet which means it may be stomach cancer. Dr. Williams is calling a Dr. Cruz (oncologist) tomorrow. He was chosen after many talks with nurses, doctors, neighbors, family and survivors of this disease. It is likely that we will go to Scott and White for the surgery.

News

Well, I don't know how to tell you, so I will just come out with it. John was diagnosed today with esophageal cancer. We don't think it is in the nodes or the liver. Tomorrow he will have another test to possibly tell us what stage of cancer. He will undergo chemo, radiation and a pretty brutal surgery. That is all that I know so far. Dr. Williams knew about this before the party but chose to wait to tell us so we could enjoy the night and the visit with his children.