Update October 30

Hi All,

I just got a call from our dear, dear friend Pat McAfee, who lives in
the Dallas area. Pat came to visit us the weekend after John was
diagnosed. She has not taken a vacation all year and told me that she
was going to use her vacation time in Temple. We have some details to
work out, like when she would come, most likely for the surgery and
beyond, for a few days. We got a call from Sheila Blackwood
yesterday. She was John's nurse in Denison for many years. She has
also offered to come. I think the plan is for Charles to be there for
the surgery so, looks like we will have some help! I would rather all
the help not come at the same time in case we are there for a long
time. Though the doc said 2-3 weeks, I know that it could be much
longer.

Pat's daughter, Nikki Pope has been here 3 times since John's
diagnosis and is driving here, as I type. She will be here until
Sunday. She says other than going to the football game, she plans to
roll up her sleeves and help me get the house finished to be
photographed next week. We have put it back on the market. I need to
get some boxes out of here, go through one more room that has boxes
and I REALLY need help getting some paper work filed. I am really not
good with that. So, sweet Nikki again shows up to save the day!

Tomorrow at 1 PM we see the cardiologist to make sure John is cleared
for surgery.

John will be in ICU for at least one night and maybe 2. I have a
hotel reservation for the night before surgery and 2 nights after. I
plan to live in his room with him once he has been moved to a regular
room. As I said in the last email, the rooms are very small and the
furniture, in a word, sucks. That may mean that from time to time
during our stay that I will need to go get some sleep in a good bed at
a hotel. I will do some research on other places to stay rather than
the Hilton that is right across the street since it is not exactly a
thrifty price.

John and I went back to the hospital before we left yesterday. We met
a couple that had been there for three weeks. The husband is 70 years
old and was diagnosed the same as John. Stage 3 Esophageal cancer.
They had the same doctor that we are seeing. The man (Johnny) looked
really good. He has not gone through the chemo and radiation, but
plans to. His wife told us that the care was incredible and her only
complaint was the furniture for. She had lots of bedding folded up
next to the settee/bed. She showed me what she has done to make it
tolerable. I will do something similar. Both had nothing but
wonderful things to say about the surgeon. Not only as a doctor but,
as a person. I think John really felt better after talking to them.
While I talked to the wife, John talked to Johnny. I am not sure what
all was said but, I could see that John was more relaxed after their
visit. They were not sure how long they would be there, they said one
day at a time.

There have been a few who have raised their hands to help some with
the dogs. We live in very northwest Lubbock and some of the offers
have come from very southeast Lubbock. My sister-in-law Sheila, lives
as far east as we live west and she has also offered to help. I
appreciate everyone that has stepped up and I will talk to Allison to
see how we need to do the dogs so that it is not too much on anyone.
We have never boarded our dogs and I really don't want to do that
now. I guess if it gets to be too much, we could but, I think Nash
would have a very hard time with that. Peaches is much tougher than
Nash is even though he is a giant.

John and I are both very tired from our trip to Temple. He is
sleeping a lot and goes to bed very early. It will be interesting to
see how all of this shakes out through the next less than two weeks.

Keep those cards and emails coming in. We both appreciate them.

Love,
Shere

Update October 28,2008

Hi all,

We are in a hotel room in Temple, Texas across the street from Scott
and White Hospital and Clinics. John's son, Charles came from Austin
to accompany us to the consultation with the surgeon. He was a sight
for sore eyes, when he walked through the door. I think all three of
us has made up our minds before the consult was over, though we did
talk about it afterward.

This doctor by far has the most experience of the 3 surgeons that we
have seen. I think he has more experience that the Mayo doctor and
the Dallas doctor combined. He is very cordial and was extremely
good natured about all of my questions, which there are plenty. We
were happy to hear that he wanted to do surgery within the window of
time that all of the information sites suggest. There are no
hospitalists at Scott and White and he is going to be in town. He
said that he does rounds 7 days per week. The hospital is small in a
small town, quiet. We stopped by the floor where John would stay
after surgery. It is certainly not the most comfortable I have seen
for visitors or family but, I can work with it. We ate in the
cafeteria and the food was very good.

So, we have a plan. We will return to Temple on November 11 and John
will have surgery on the 12th. There are many variables that I will
go into later but, I will say that like Fig, this doctor thinks the
primary could be in the stomach and moved to the esophagus. If this
is the case, John's stomach will be removed. There are many ways this
could go and the decision can only be made once an incision is made
and the doctor can see what is there. He was quite impressed with the
tumor being invisible with chemo only and has not seen that before.
We are expecting a 6 hour surgery.

This is the nutshell of our visit. We fly home tomorrow to start
making arrangements to come back to Temple in two weeks. Do any of
you know anyone in the area? We are 30 minutes from Waco and a little
over an hour from Austin. With my huge genetic gene pool, am I
missing any cousins that live in the area? Or Mastiff people? Just
curious.

We have been told to expect a 2 to 3 week stay. This has been the
shortest prediction from anyone. There won't be the comfort of Pat's
home or Claudette's or the running in and out of Nikki. We probably
won't need to go to David Burings though he has graciously offered his
home to us after surgery. Stephanie has also made a wonderful offer
for a place to stay afterwards. I guess we will stay in a hotel a
couple of days before we drive back to Lubbock. I think Charles is
going to work it out so he can drive us home after surgery. I really
don't want to do that drive alone in case we get into any problems.

We have one huge issue to work on and that is a tag team to help with
the dogs. Allison, of course, has stepped up to be in charge of that
but, she is in the final throws of her RN training and won't have much
time. If any of the Lubbock people can step up and let us know if you
can help us with a schedule to get the dogs in and out of the house
during the days we're gone, it would be very helpful. I would like to
spread out that duty since it could be up to 3 weeks. If you can't,
don't feel guilty. We will work it out. Is anyone planning to
vacation in Lubbock in early November that needs a place to stay? :-)

We will be home tomorrow afternoon. We see Fig on Thursday and the
Cardiologist on Friday. The surgeon here was insistent that we get a
release from the heart doctor that John can withstand the surgery.

Any questions are welcome. We feel very comfortable and are very
grateful that Dr. Bill Williams continued to push us to come to
Temple. Just like when we knew Fig was our oncologist, we know this
is our surgeon.

Love,
Shere

Update October, 22

I am so happy to report a day of solutions rather than problems. The insurance company has approved us to see the doctor tomorrow. We will be home, probably by 6:30. We now have an appointment to see the doctor at Scott and White on Tuesday. We will go to Temple and spend the night, then probably drive home Tuesday afternoon. We will then have a choice, and that feels much better to both of us.

Our wonderful neighbors, the McCartney's brought some tasty homemade soup and bread tonight. It is awesome, thank you Susan. Our dear friend and Allison's mother, Kaye will come by the house tomorrow to let the dogs out a couple of times during the day. Thank you, Kaye.

We got a call that Harriett, John's daughter-in-law came through her surgery today without a hitch so, that was great news.

Now, all we have to do is figure out the dogs when we go to S & W and then we will make a decision where to go for the surgery. Bill Williams is THRILLED that we were approved to go to Scott and White. I looked at their website and read about their esophageal cancer program and I can see why Bill has steered us that way.

Thank you all for your love and care. We'll let you know how it goes in Dallas.

Trapped in a 3 Stooges movie...

Thank you all for your concern. Sigh........ I found out at 4:45 today that we do not have authorization from the insurance company to see the doctor in Dallas on Thursday. I found out about this by "accident" when I called to ask about another issue. Dr. Bill Williams told me last week that he was working on getting approval to go to Scott and White. I called the insurance company to see if they had made a decision. I was amazed to hear that we are approved to now see a doctor at S&W that we have no appointment with or have never contacted. However, we do not have approval to see the doctor we have spoken with for almost 3 weeks, have an appointment with day after tomorrow and have airline tickets.

I don't know what will happen but, I will be spending tomorrow figuring out how this has happened and whether we can still see the doctor in Dallas. If not, we will loose our airline tickets. The only thing I can think of to compare this is, a Three Stooges movie. Those of you that are younger, won't know what I am talking about but many of you will understand. This whole thing makes about as much sense as a Three Stooges movie.

I don't know if I am messing up somewhere or what is happening but, I was sure that all of that was taken care of. I can't find a confirmation number in my notes so, I cannot prove that we have ever had one. I always thought I was pretty good at communication but, I have to tell you, this is just beginning to be almost funny. I said almost.

So Claudette, I will let you know tomorrow whether this thing will fly.

John seems to be a little stronger. I think the increased tube feeding is helping quite a bit. He is having trouble with swallowing. I am hoping that this is still the effects of the radiation. I will be glad when we can do another scan. He took the dogs for a walk today, then rode with me to town to get a tetenous shot. (My left hand got torn up by a stray cat when the dogs scared it). So, never a dull moment around here.

Hope all of you are doing well and are having fun. I'll report back to let you know if we go to Dallas, or not.

Looking ahead...

John is a wee bit stronger so, I am not as worried about the trip. I know it will be very hard on him but, I think we can do it.

Lesson in Life

One of the greatest secrets of life is having patience & wisdom.

A little commentary

In response to a friend offering that she'd take a heart attack any day over John's struggle:

YOU and ME both! I would like to go out like my mom. Go to sleep. That's it.

They are continuing all of this treatment and the surgery because this is such a deadly cancer. The point is to get him some quality time. This will get him sometime, it is the nature of the disease. I'm not sure I would go through all of this but, he feels he has no choice.

I will say that I now think he will be strong enough to make the trip but, he will be so worn out.

Update October 17, 2008

I thought I would give a quick update on John's condition. Since the third week of radiation, he has felt really sick. It seems to me that he has not gained ground. Today he was a little bit better in the early part of the day but, by around 6 PM he was really sick again. He gets very cold, has hiccups and feels nausea. I give him meds to help with some of the symptoms and sometimes they work. I have talked to some of the doctors and have been told that it is not unusual for him to be so sick since he has had such intensive treatment.

Our plans at this time, are to go to Dallas on Thursday for a consultation, with a surgeon at Medical City. This is a hospital that I am not familiar with and have only learned about it on the internet. We will see a Dr. Gogel who seems very cordial over the telephone. John's niece Claudette, will pick us up at the airport, transport us to the doctor and hospital. I will tour the hospital while we are there. We will fly home at 5PM and be back in the same day. I have concerns about how John will tolerate this trip and I am beginning to wonder if he can make it. We still have a week so, hopefully he will gain a little more strength. I know he will be wiped out when we get home.

I learned tonight that John's daughter-in-law, Harriett will be having surgery for breast cancer on the 22nd. She and Jeff live in Iowa and will be going to Mayo up North.

We have had a bit of a change. We will not be working with Dr. Ronaghan as a follow up surgeon in Lubbock. It is a long story but, let's just say that she was not the best choice for us. According to the doctor in Dallas and Dr. Bill Williams (the Gastro doc) we don't really need a follow up doctor here. Dr. Gogel told me that he would not release John if there was any chance of complications. Dr. Williams told me that if there were complications, John would go to the ER here and be stabilized. He would then be transported back to Dallas. That makes sense to us.

There are many stories that I could tell but honestly, they are not very happy stories and I don't want to write about them. I just wanted you all to know that we are hanging in here and have a game plan for next week.

Dr. Williams told me today that he was sending in some papers to try to get Scott and White to be an option. He has pushed us in that direction for surgery from the beginning. I don't think that will work because of the insurance issues.

I just want to give a heads up to our friends and family that are Medicare age. Beware of purchasing a Medicare REPLACEMENT policy. They are sometimes presented as a SUPPLEMENTAL policy. Just trust me on this one. Use Medicare A & B, get a D plan and then a supplemental policy to pay for what Medicare does not cover. What is very interesting is, many doctors do not even know about the replacement policies. What I do know is that many hospitals that used to accept them are changing policy and not accepting them. If you have this type of policy, you very likely will find that your choices are extremely limited. You can get out of them but, you have to wait until November 15 to request the change and it won't go in to effect until the first of the year. I don't think you want the 5 volume version on how I learned this. I did learn that this is becoming a huge problem for people all over the country.

Love,

Shere

Update

There has been some time since I have sent out an update.  There is no way that I can fill you in on everything that has happened so, I will bring you up to date.

John finished his radiation and chemo on Thursday.  It didn't begin to make him sick until weekend before last.  He seems to be a little more sick every day.  Swallowing is hurting again, he has been in bed for 4 days.  Those of you that really know John, realize he must feel pretty bad if he is staying in bed.  We have started the tube feeding again.  The oncologist said that even though the radiation is stopped, the treatment continues working and burning him for some time.  He could stay this exhausted for another 3 weeks.  That is why they want to give him a 4-5 week break before surgery so he can build up some strength before this intensive operation.

A challenge we are going through at this time is, not knowing where we will go for surgery.  We had an appointment set up to talk to a doctor tomorrow in Dallas.  John's niece, Claudette was planning to pick us up at the airport and take us to the doctor's office and we were going to fly home tomorrow night.  On Thursday late afternoon, we got a call from the doctor's nurse to tell us that they don't accept our insurance.  I had to cancel our reservations and let Claudette know we were not coming.   I have made numerous calls to doctors to try to start making another plan.  Only one has called me back but, she didn't know exactly what our new plan would be.  We still have conflicting doctors opinions about where we will go.  I will start working on this again tomorrow.

I don't know how this is all going to shake out but, I would like some input.  There seems to be 3 places we may end up.  Dallas, Scott and White in Temple and a very remote chance of Houston.  This operation will be probably in the first or second week of November.  I would like to know if any of you will be available near any of those towns to give me some support.  I know Pat M. that you have offered a place to stay if it is in Dallas and you have offered to take off the day of the surgery to sit with me.  Nikki and Claudette, I know you are available for anything I need.  There are others of you in the Dallas area.  In Houston, I know that Dee and Angie will be traveling, at that time.  We don't know anyone in Temple.  I guess it is somewhere between Dallas and Austin.  Any responses that I receive on this request will be appreciated.

I, in no way, want to put anyone on the spot.  I know many of you are working, have families, are too far away and other things.  Not everyone is wired to help in this type of situation.  I am just realizing that if John is in the hospital from 10 days to 3 weeks, doing it alone will be pretty difficult for me.  His illness has been ongoing non-stop now, since May and both of us are very tired.

I had a wonderful and long visit with my friend Judy Wilkins last night.  Sadly, she lost her husband to cancer in January of this year. They had to leave Lubbock for surgery and she called something to my attention that I had not thought of before she brought it up.  When one is in a hospital that is away from home, when the hospital released the patient, that patient may not be able to travel for some time.  Hospitals release patients much sooner that they used to.  Once the patient is released, the doctor there is no longer the patient's doctor.  If there are problems or complications, Judy's experience was, there was no one to help her, medically.  She was far from home in a hotel with a man who had just had a complicated surgery.  A doctor in Lubbock helped her set up some nursing care assistance while they were waiting for Louis to get strong enough to travel home.  When they did drive home, there was a critical emergency.  Thankfully, she was not alone on the drive and could tend to her husband Louis while her son drove.  I am just trying to prepare.

Thank you all for your interest in how we are doing.  We are hanging.