John Dickey update Dec 18, 2008

Hi all,

After being home for a little under a week, John had to go back to the
hospital. He has been getting IV feedings 12 hours a day since being
home. He still resists eating very much food. He says after a few
bites, he feels discomfort. He has difficulty with digestion and does
not hold on to his food very long.

Today (actually yesterday) he complained of feeling bad. He was
congested for most of the day. In late afternoon, he started to
shiver and cold not get warm. I took his temperature and it was
100.8. I called Dr. Kearse's office to report the fever and his
condition. I took his temp about 15 minutes later and it was up to
101.2. I was told by Dr. Kearse's office to take him to the
hospital. I protested because I knew that John would protest. I was
told to take him and to take him now.

I got myself together somewhat, put John's robe and slippers on him
and lead him to the car to drive to the emergency room. I left John
in the car at the front door while I went in to get him admitted. The
nurse at the window told me that there were no rooms available. I
explained that he was a cancer patient, running fever and that I would
not bring him into the lobby to wait. The nurse told me that he was
sorry but, there were no ER room available, at all. After explaining
that Dr. Kearse had sent us here and telling him that I had Dr.
Kearse's numbers in my cell phone, I told him that I would call the
doctor and ask him where else to take him. The nurse looked at me in
shock and asked where in the world would I take him. I told him that
Dr. Kearse has privileges at all of the hospitals and that I might
take him to Highland, as I started dialing my phone. I got the
answering machine at his office since it was after 5 PM. I began
calling his wife's cell phone. His wife, Barbara is also his nurse.
I watched this male nurse look on the computer as he was telling me if
we went to Highland, they would just send us back here. I asked why
they would do that and what good would it do to come back if they had
no place to put him. I then said that I would just ask Dr. Kearse to
make a direct admission and we could just go straight to a room. My
friend, the nurse, told me that my plan was almost impossible to do
and admission took a lot of time. I explained to him that this was
not our first time to the hospital and that I knew that if Dr. Kearse
made a call, we would be taken straight to a room if there was no room
in the ER. I was sure that Dr. Kearse would not like to hear that Dr.
Dickey was left in the lobby of the ER for hours while running a high
fever and it just wasn't going to happen. Barbara's phone was busy.
Before I had time to hit redial, this guy suddenly located a room!! I
asked if he could bring a wheelchair to the front door to get John out
of the car while I parked. He did so, the whole time telling me he
sure hoped an ambulance didn't come in because he was putting John in
one of the trauma rooms. I said nothing but thought, I didn't give a
hoot which room it was, just take him in!

I parked the car and went back to room 7 which is in the very back of
the ER, the less exposure to germs. A wonderful male nurse named Kent
came in to take over. He took John's temp and it was up to 101.8. We
never saw an ER doc. The nurses brought in antibiotics, an xray
machine, pulled blood and took care of business. I told Kent that we
liked 7 south and if there was a room there, that is where we wanted
to go. Ten minutes later, Kent told me we would be going to 7 south.
Shortly, Dr. Kearse came in to look John over. He had gone to 7 south
first thinking that John was already there. He thinks there is an
infection caused by the line that is being used to give IV food to
John. He said that they would probably have to take it out and put
another in but he wouldn't know for sure until he got the blood work
back.

John told Dr. Kearse that he wanted to go home tomorrow. Dr. K told
him that we would have to see about that. Outside the room, he told
me that John would be there again for up to a week. We got up to the
room and John just asked that we turn out the light, leave him alone
and let him sleep. He asked me to go home and take care of the
puppies. He was very agitated. We turned out the lights and I came
home.

I, of course, can't sleep so I called the nurse a few minutes ago.
She said that his levels were pretty low. Probably caused by
malnutrition. We just cannot get him to eat, no matter how hard we
try. A few bites, and he is done. So, that is all I know for this
report. Other than Dr. Kearse came up to the floor after we got up
there and told me that they would hold off on the IV feeding until he
could get one of the infectious disease guys to come to see him. We
requested Dr. Dennis Duriex who is a personal friend and a fellow
Mastiff lover. We will see what happens tomorrow.

I can't tell you how grateful I am to Dr. Kearse. Usually when a
doctor sends a patient to the ER, they wait until an ER doc sees them
before doing anything. Dr. Kearse was personally there before an ER
doc would have gotten to us and had given orders for treatment and
tests by the time we were wheeled into the treatment room. This made
our time in the ER only about an hour long. Believe me, from my
experience, this was lightening speed!

That's the report for now.

Love,
Shere

Update Dec. 12,2008

Hi all.

After a week in the hospital, John came home yesterday. He received
24/7 IV nutrition while there and ate a few meals, as well. I think
he has gained a little bit of strength but, certainly not enough to
undergo another round of chemo.

John was very restless while awake in the hospital and wanted to come
home. Dr. Kearse worked hard to get medicare to pay for the nutrition
infusion to be paid for at home. I find it hard to understand why the
insurance companies will pay for this in the hospital but, are
reluctant to do so at home. Home is so much less expensive. Anyway,
we got it approved and came home yesterday afternoon. It was a very
short time before John was ready to go back to bed.

About 10PM, the home nurse came by to connect the nutrition bag to the
new pole and the other equipment that was brought here. The procedure
and all of the paper work took over 2 1/2 hours. This thing will run
every night for 12 hours. Each morning, a nurse will come to shut it
off. I have to check his blood sugar every 2 hours during this
process. He has never had diabetic issues but, with all the glucose
and the rich nature of the milky looking substance going in, I guess
there is a possibility of throwing off his sugar level.

This apparatus is a typical hanging bag like we see in hospitals. The
one that was brought yesterday had very small wheels and is very light
weight. It doesn't roll over the carpet easily and is top heavy,
making it prone to fall over if being moved across the room. Since
this is liquid going in, it requires liquid going out so, John made
multiple trips to the restroom last night. Since he couldn't handle
the pole, I rolled the pole for him on each trip. It has to be
unplugged, as well so, we have cords and tubes to travel with.
Needless to say, with the checking of blood sugar and the assistance
with the pole that had to be carried to the bathroom rather than
rolled, I had little sleep.

Today we were brought a heavy duty pole and I think it will be much
easier to handle. I still think that John will need help since the
bathroom is more than a few steps from the bed. We both slept a lot
of the day after the IV was discontinued this morning.

Home nursing will be back tonight. This will be ongoing (not sure how
long) every day.

We have decided that I really need some help. I can't take care of
John all night and all day, too. I have put out a couple of feelers
to see if I can get some help taking care of John. It is hard to put
my finger on exactly what I need help with or what it will look like.
I got more rested while John was in the hospital since I stayed home
but, that rest is quickly spent having tasks to do during the night.

We may need a live in person, we may need someone to prepare food,
someone to just give me a chance to rest and make sure John gets what
he needs. This may need to be a combination of people. I am open to
your suggestions. I have been given some good ideas by my friend,
Judy Wilkins. She has shared with me what all it took to take care of
her sweet Louis last year through his cancer. She usually had 3-4
people in the house at all times. I don't think we could swing that
but, we do need to get some help, here.

I have not much more to say other than we are here, we are home and
John is glad to be in his bed and his chair.

Hope all of you are doing well and having fun getting ready for the
holidays.

Love,
Shere

What is the value of Strength?

This is being put on my blog and not going out to all on the Medical
list. I think there are only two people that know where my blog is.
This writing is very personal and I didn't want everyone on it to see
it. But, I did want ya'll to know that I have a blog and much of the
year's story is on it.

We always compliment others on their strength. We have great
admiration for the strong. "Oh, he or she is such a strong person.
If only I could be more like s/he." The value of a person is often
seen by the outward accomplishments. Accomplishments in business, in
finishing a project, in a job well done and the strength it took to
accomplish such. We know how important it is to remain strong. God
forbid if we show our "weaknesses" our "vulnerabilities". Just stay
strong, nothing will be handed to you that you won't have the strength
to do.

I don't see much literature on the virtues of "cracking" so, those of
us who crack want to hide it and not show it to many or any others.
God knows that cracking shows weakness and strength is what we all
strive for. The problem is, I see an awful lot of cracking these
days. I will be the first to raise my hand to say that my crack is
beginning to feel more like a valley, and not a small one. I also see
that it is not just me.

For instance. I have a relative that is separating from a spouse. Of
course, they are telling no one. Each are falling apart inside in
their own ways. One calls me almost daily from sheer loneliness,
though these two still see one another every day.

Then there is the other relative that is calling and threatening
suicide telling me that there are two pistols in the house. No, they
probably will not be used, there was a cry out for help to me, on the
phone. This one would never let anyone know other than a chosen few.
This one thinks the most important life value is to be strong, to pray
and to believe.

OK, back to me. I don't pretend to be very strong these days. I have
had the ____ kicked out of me this year, this month but, lets talk
about this day. Sleep eludes me until it doesn't and then I am out
like the dead, sleeping way into the day and wondering how I will ever
get all the things done I need to do that requires business hours.
You know, strong people operate from morning to night. Up with the
chickens, burning daylight, getting things done. Well, my daylight
hours are shorter than those people, these days.

When I arise from the stupor that could have been sleep, I take care
of the dogs and stress that I am not at the hospital. Today was a
typical one of those. I finally called the Vet to get a new
prescription that I needed over a week ago for Nash and said I would
pick it up on the way to the hospital, if I didn't forget. After
dressing and doing as little grooming as possible to make it out the
door, I got in the car to get started with the day. I had a short
visit with my friend, Pat Groves a day or so before and needed to get
some clarification on an opinion of his that we had talked about. I
thought he had said, spend down every cent if needed, to take care of
John and something will work out. I remember the days several decades
ago when I always thought that way. And you know? It always did work
out. Until the time that it didn't and it didn't in such a big way, I
have had difficulty trusting the universe to provide, since. Gosh, a
strong one would not let a little thing like that stop one.

I called Pat and yes, this is what he had said. We talked about it
for a while and I cried. Sobbed. Scared. But, he gave me a
perspective that was helpful enough to get me to call Sherry Williams
about some business that I have not been able to call her about in
three weeks. As we talked, I sobbed. Thank goodness I carry tissue
in my car. The passenger seat was getting pretty full of it.

I had to end the call with Sherry so I could go into the Vet's to get
the overdue medicine. As I was pulling out of the parking lot, my car
dinged and told me to get gas so, I pulled in to Boltons, right across
the street to fill up. While cleaning my windshield, I saw out of the
corner of my eye, Melinda. Oh, Melinda. Sweet simple Melinda. I
waved and went about my business of filling up. Melinda works for a
home care agency that Pat had hired to care for Rita during the day
hours during the last part of her life. Melinda was one of the care
takers. She was very sweet but, really likes to exercise her vocal
cords. Constantly. Constantly. Rita had insisted that I let Melinda
go because the constant banter was driving her to distraction,
irritation, exhaustion and quite frankly out of her mind.

Once I filled up, I realized that there is a Hospice in the same
parking lot of this service station and maybe it was time for me to go
talk to them about their services or, maybe it was time for me to do
some venting with one of the counselors there. (I had done this once
before last summer.) I pulled the car into a parking lot, gave it a
minute's thought, then decided that I really needed to get to the
hospital. I hadn't been there all day and it was approaching 4PM. I
look to my right and what do I see? Melinda pulling up next to me,
getting out of her car, opening my passenger door as I threw the wet
tissues into the back floor of my car so she wouldn't drown in them.
As she sat down in the car, she burst into tears, told me that her
husband had filed for divorce and threw herself at me and held on for
dear life. I patted her back and told her that I didn't know many
people who were not going through personal hell right now. Melinda
went on to tell me about all she could, none of it making much sense.
Her husband filed for bankruptcy, has a millionaire pair of parents,
was sleeping in a parking lot in his car, had packed up all his
belongings in boxes over a couple of weeks but, she had not noticed.

During this confessional, I got a call from Allison to ask how John
is. I had to tell her that I don't know. Because I don't. Not
because I hadn't seen him yet but, because, I DON'T KNOW. From the
call Melinda asked what was going on with John. I gave her a very
brief cancer with no stomach answer. That satisfied her and she
continued to talk. I did get in about 5 times that I had not seen
John yet and that I needed to get to the hospital. That didn't slow
Melinda's story down about their sex life and what she needs and how
her husband said he needed more quiet and she just didn't understand
what he meant. She finally let me go. Almost an hour and a half later.

SO..............................I go to the hospital. I got a call
from my friend, Pam Thompson that she was going to come by to leave
off some incredible homemade candy. I told her that I was a wreck and
to come on up. I cried all the way up the elevator. My guess is the
people in the small space with me was thinking that I was not being
very strong. I was bringing John some clean scrubs and underwear. As
he was struggling with getting these on, fighting with all of the
tubes coming out of his body, I started to help him when my cell phone
rang.

Guess who? It was Melinda. She was making sure that she still had my
correct cell number. She had saved it from the time she was taking
care of Rita. Sigh. I got off the phone as soon as I could.

John got changed and tried to eat something the hospital had brought
him. Very soon, Pam walked in. A little beam of sunshine. I was
sitting on the couch crying. John was eating and happy to see the
candy. When I had unpacked his extra clothing, I had unloaded the
week or two's worth of mail that I had not been capable of opening.
Pam saw it, picked it up and said, come on. ( Pam and I go back to
the 70's and she is fully aware of my paper phobia.) We went out in
the hall to a desk and tackled that paper like it was just some sort
of by product of trees or something. It was amazing. The biggest
pile was to be shredded. The second biggest was in the trash basket,
the next was either bills to pay or phone calls to make. She picked
up her cell and made some of those phone calls on the spot without
asking me anything and got some answers to some questions I have
needed to ask for a month or two. The smallest pile was one that
needs to be filed. When I got home with the paper, I shredded like a
strong, powerful woman!

It remains to be seen when the bills or calls will be made but, I am
shooting for tomorrow. The filing.....hmmmmmmm, that may have to be
left to someone else.

So, this is my day. I was hoping I would sleep earlier tonight but,
it's after 2 and I am typing.

I talked to Judy Wilkins tonight. She lost her husband to cancer this
past January. His illness took him in only 4 months. She told me how
strong I am. She said that from the time that Louis got sick, she
always had a least 2 other people in the house helping her. Louis had
lots of friends. It got to a point that those friends told Judy that
they were going to have to hire some help so, then it was 4 people, at
all times. She says she doesn't know how I am still standing. She
said a year ago today, one of her friends called the doctor to come to
give her a shot to put her out so she could sleep. She slept 24
hours. I can't imagine having that kind of help, I have had
intermittent help during the 7 months this has gone on but, nothing
like Judy had. We talked about the differences. Louis had many
friends. John has not cultivated friends. That is a big difference.
My friends want to help me but, they don't want to come to care for
John on a regular basis and that makes sense to me.

She has suggested that I contact Hospice to see what kind of help I
can get. I think I have passed strong and have moved into crack. So,
what does that mean? Is that weak? I really don't know and I am not
sure I that I will ever really care about that. I just get a little
tired of people staring at me while I walk around in public sobbing.
I need to get some bigger sunglasses.

That may be the whole answer to the question. The strongest ones have
the largest sunglasses. Think about Jackie Kennedy.

That's my story for the day.

Update Dec. 5, 2008

Hi all,

This will be a very short note since it is so late. John has had a
very difficult time eating enough food. He is just never hungry. He
has lost weight since we have returned from Scott and White. It was
suggested to us by Dr. Williams that we return to Temple to have
nutrition given to John. After a couple of discussions with Dr.
Shabahang, in Temple, we decided to stay home since John could get the
exact same treatment here. Going back to Temple would require two
days of driving since John can't ride in the car for many hours and
untold stress on both of us to be away from home again.

Dr. Kearse, John's primary physician saw us today and spoke with Dr.
Shabahang on the phone. It was decided to admit John to Covenant.
Getting the central line installed tonight was quite an ordeal and I
may write more about that at another time. Dr. Shabahang said that he
could be in the hospital for over a week.

That's the latest.

Love,

Shere

update Dec. 3, 2008

Hi all,

I just wanted you all to know that we are home. John's son, Charles
drove us home from Temple and stayed with us until Friday after
Thanksgiving. Charles was so very helpful and is a pleasure to be
with. Thank you so much, Charles for fixing the front door latch. I
have been asking people for five years to fix it. It works perfectly!!

We had a very nice Thanksgiving. My brother, Terry and his wife,
Sheila came. My good friend, Johnanne came and brought 2 friends that
we had not met. Charles, John and I made 8 for dinner. After dinner,
Johnanne pulled out a domino game called Mexican Cars. While Charles
watched TV with John, the rest of us played the domino game until wee
hours. We had a great time.

We are very happy to be home. Allison took excellent care of the
house and the dogs. Nash took off some weight and was put on some
medications that are making him feel and move much better. I don't
know what in the world we would or could do if it weren't for the
wonderful friends and family that make all of this possible.

John is having a pretty hard time eating. Without a stomach, he is
rarely hungry and feels bloated after only a bite or two. I am
communicating with Dr. Shabahang in Temple. He has suggested that we
return to Temple to admit John again in order to get some IV
nutrition. We think that we can get that done here, at Covenant
Hospital and won't have to drive all the way back to Temple to do that.

I want to thank Charles and Pat again for all the help while we were
in Temple. What a God send.

Love,

Shere

Fwd: Update November 18, 2009

I just received this email from Keri Ferguson.  I stand corrected.  I should have said that she is my friend that happens to be my banker.  She is SO much more than my banker and I want to publicly apologize to her for the slight.  We are so lucky to know such wonderful people who care about us.  Keri, I am sorry, you are a wonderful woman and I won't make that mistake again!

This is an example of the wonderful support that we have.

Thank you all so very much, and thank you Keri for calling me on my mistake.  I owe you lunch or an afternoon on the porch!

Love,

Shere

Begin forwarded message:

From: KFerguson@lubbocknational.com

Date: November 18, 2008 8:17:34 PM CST

To: "Shere Forkner" <sfork@sbcglobal.net>

Subject: Re: Update November 18, 2009

You are so welcome. But you did make one mistake. You said Keri is our banker. While that is true, what I am much more than that is a friend who cares about you both very much!  And, yes, I am your banker too!  But mostly I am your friend. Remember that. When the days are so hard that you think you can't do it anymore, think about all of the friends like me who love you dearly and are rooting you and John on. We can't all be there with you but we are there none the less. Because you are both in our thoughts, prayers and hearts all of the time. Give John my love and tell him the prayers will not stop. You stay strong. But also fall apart when you need to. It will do you good. Then pick yourself up and go back and continue the fight. Please keep me informed. I truly do care about you both.


----- Original Message -----
From: Shere Forkner [sfork@sbcglobal.net]
Sent: 11/18/2008 08:05 PM CST
To: Undisclosed-recipients: <>
Subject: Update November 18, 2009



Hi all,

It has been a week since I have written.  Last Wednesday morning
Charles, John's son, Pat (my friend) and I took John across the street
to the hospital.  We arrived at 9:30.  There was the typical (as I
have experienced) right hand not knowing what the left hand is doing.
John did not go in for prep until 11:30 and finally, the surgery at 2
PM.  We were given periodic updates throughout the operation and it
ended at 7PM.  The team of doctors came out to tell us what was found.

They took only a small part of the esophagus, all of the stomach, the
gall bladder, many lymph nodes and some other suspicious looking
tissue in the surrounding areas.  The stomach was difficult to remove
because it was adhered to other organs and tissue.  There was only one
incision made, which was the best case.  We were told that John could
not eat until tomorrow after a swallow test is done to make sure that
everything is in operating order.  The feeding tube was removed and
another was not inserted so, he has been without food for a week.

We are expecting and hoping for the pathology reports tomorrow as
well, to see whether there is any metastasis.  So, with the swallowing
test and the pathology report, tomorrow is a big day.  The team of
doctors said that the stomach was where most of the cancer was and had
moved up into the esophagus.  I remember the oncologist at Mayo
telling us we were going about this all wrong because we were treating
this as stomach cancer.  Thank goodness we were.

For the first few days, John was totally out of it and may have had
some reactions to the pain medication given.  He has leveled out and
is much better now though, any movement really hurts him.  He does get
up to walk one or two times per day.  This is usually followed by more
pain.  All of this is expected and I think that he is doing relatively
well considering what he has been through.

John never went into ICU, he was taken directly from recovery to a
room.  I was stayed with him at night while Pat stayed with him in the
day for a few hours  the first few days.  That gave me a break to go
over to the hotel to rest or take a break during the day.  Charles has
been here 3 times, driving in from Austin so, we have had lots of help
which has been very appreciated.  John's daughter, Denise, came to
Lubbock to help us get packed up.  I can't thank you guys enough.

Pat had to go back on Sunday so that she could start work on Monday
morning.  Charles spent the night at the hospital on Saturday night
while I stayed with Pat at the hotel.  I think that is the first full
night of uninterrupted sleep I have had since May.  I really
appreciate all of the support.  Charles left on Sunday afternoon to
get back home to take care of his girls and his animals.  He may come
back in a few days to give me another break.

We were first put into a very small hospital room in which we had to
move the bed table and other things to get into the bathroom.  I
pestered everyone at the desk enough that Sunday afternoon, we were
moved to a much larger room.  This flatlander was having trouble with
claustrophobia!  The nursing care here is very good, as is the doctor
care.  I do wish that the people who made decisions on the furniture
in the rooms has actually sat on them before purchase!  The poor
choices in furniture has really made us miss the wonderful VIP rooms
at Covenent!

We are taking this journey one day at a time.  We are not certain when
John will be released.  I am sure it will take some time before he is
up to traveling back to Lubbock.  My guess is we will stay in a hotel
for a couple of days before we actually leave Temple to make sure he
is stable.

I so appreciate all of the calls and emails and texts that we have
received.  The support is what gets us through every day. We
appreciate the flowers from Jeff and Harriett and from Keri Ferguson,
our banker.  Keri the room is full of fragrance, still.

This is a recap to bring you up to date.

Love,
Shere

Update November 18, 2009

Hi all,

It has been a week since I have written. Last Wednesday morning
Charles, John's son, Pat (my friend) and I took John across the street
to the hospital. We arrived at 9:30. There was the typical (as I
have experienced) right hand not knowing what the left hand is doing.
John did not go in for prep until 11:30 and finally, the surgery at 2
PM. We were given periodic updates throughout the operation and it
ended at 7PM. The team of doctors came out to tell us what was found.

They took only a small part of the esophagus, all of the stomach, the
gall bladder, many lymph nodes and some other suspicious looking
tissue in the surrounding areas. The stomach was difficult to remove
because it was adhered to other organs and tissue. There was only one
incision made, which was the best case. We were told that John could
not eat until tomorrow after a swallow test is done to make sure that
everything is in operating order. The feeding tube was removed and
another was not inserted so, he has been without food for a week.

We are expecting and hoping for the pathology reports tomorrow as
well, to see whether there is any metastasis. So, with the swallowing
test and the pathology report, tomorrow is a big day. The team of
doctors said that the stomach was where most of the cancer was and had
moved up into the esophagus. I remember the oncologist at Mayo
telling us we were going about this all wrong because we were treating
this as stomach cancer. Thank goodness we were.

For the first few days, John was totally out of it and may have had
some reactions to the pain medication given. He has leveled out and
is much better now though, any movement really hurts him. He does get
up to walk one or two times per day. This is usually followed by more
pain. All of this is expected and I think that he is doing relatively
well considering what he has been through.

John never went into ICU, he was taken directly from recovery to a
room. I was stayed with him at night while Pat stayed with him in the
day for a few hours the first few days. That gave me a break to go
over to the hotel to rest or take a break during the day. Charles has
been here 3 times, driving in from Austin so, we have had lots of help
which has been very appreciated. John's daughter, Denise, came to
Lubbock to help us get packed up. I can't thank you guys enough.

Pat had to go back on Sunday so that she could start work on Monday
morning. Charles spent the night at the hospital on Saturday night
while I stayed with Pat at the hotel. I think that is the first full
night of uninterrupted sleep I have had since May. I really
appreciate all of the support. Charles left on Sunday afternoon to
get back home to take care of his girls and his animals. He may come
back in a few days to give me another break.

We were first put into a very small hospital room in which we had to
move the bed table and other things to get into the bathroom. I
pestered everyone at the desk enough that Sunday afternoon, we were
moved to a much larger room. This flatlander was having trouble with
claustrophobia! The nursing care here is very good, as is the doctor
care. I do wish that the people who made decisions on the furniture
in the rooms has actually sat on them before purchase! The poor
choices in furniture has really made us miss the wonderful VIP rooms
at Covenent!

We are taking this journey one day at a time. We are not certain when
John will be released. I am sure it will take some time before he is
up to traveling back to Lubbock. My guess is we will stay in a hotel
for a couple of days before we actually leave Temple to make sure he
is stable.

I so appreciate all of the calls and emails and texts that we have
received. The support is what gets us through every day. We
appreciate the flowers from Jeff and Harriett and from Keri Ferguson,
our banker. Keri the room is full of fragrance, still.

This is a recap to bring you up to date.

Love,
Shere

Update November 11, 2001

Hi all,

Just a quick note to let you know that we are in Temple. John is to
report in at 9:30 AM tomorrow for his surgery. Our close and dear
friend, Pat McAfee (Pope) arrived this morning to sweat out the next
few days with us. It is wonderful to have her here, with us. John's
son Charles, who lives in Austin, plans to be here in the morning.

We had 5 pre op appointments at Scott and White today and came back to
the hotel pretty worn out. Pat and I split a salmon dinner and John
had cup of beef broth. He is now trying to drink all he needs to
drink of a colon cleanse.

We expect the surgery to be a 6-7 hour procedure. Feel free to call
me tomorrow if you want an update. My cell phone is 806-789-2009. I
have reception in most parts of the hospital.

That's it for tonight.

Love to all of you,

Shere

Update November 3, 2008

Hi all,

This is just a quick note to let you all know that John passed the
cardiology question. We are scheduled for his surgery on Wednesday
Nov. 12. We plan to leave on Monday to drive to Temple. John has
several pre op appointments on Tuesday.

John's daughter Denise, will be coming to Lubbock this Friday for the
weekend and she leaves on Sunday. If we are totally packed, we may
leave on Sunday late afternoon to break up the long drive. We will
see about that.

John saw Dr. Anderson today (Radiologist/oncologist) He was somewhat
concerned that John has lost another 10 pounds since our last visit.
I'll be doing a lot more tube feeding between here and next week.

That's the latest.

Love,
Shere

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.

More routine.

Getting used to having only 2 dogs is a mixed bag. The house is easier to keep clean, there is less hair to deal with and it is certainly quieter. (Lil always made her presence known.) But, it is empty without especially Lil and Lucky. I cried for Lil last night when going through some pictures. I am combing through the house with a fine tooth comb to unclutter it. I have rented a storage space just to move the excess out while we are in showing mode. ( I don't know what else to do with all of this stuff right now.) We are giving the house a very deep cleaning that it needed badly so that we can put it back on the market. I do enjoy Nash's company but, I worry about how comfortable he is. He hurts when he walks and I have not had all the gas I need to take care of everything. I know he needs some medical care and I need to line that up soon. Peaches is her usually pesty self. She is a sweetie.

John has 4 more weeks to go with the radiation then there is a 4-8 week break. Since he will not need anything other than some tube feedings and if his levels are high enough to be subjected to an airplane ride, maybe we could visit California.

Faith is here for the weekend. This is the first overnight for her since John's diagnosis. We are really glad to have her here. She is a ray of sunshine for us.

MRI at Lakeside

I know it has been a while since I have written an update. Time has been both flying by and standing still, it also seems to be mixed up at times.

I am sitting in the lobby of radiology at Lakeside Hospital, at the moment. John is having an MRI done on his brain. More on that in just a bit.

I have held off spreading the news of our latest reports until we had an opportunity to see Dr. Fig yesterday. I wanted him to confirm what we were told by the last endoscopy and sonogram. Dr. Fenton told us a little over a week ago that he saw no sign of a mass, at all. I was not sure if that meant that the tumor had shrunk and could not be seen within the walls of the esophagus or if it was gone. Dr. Fenton could not answer that question. John had a PET scan done before our appointment yesterday. Dr. Fig came dancing into the room like the Papa in Fiddler on the Roof! He told us some humorous stories about his visit to Porto Rico and seemed to be in a wonderful mood. He called up the PET scan on his computer to show us the before and after PETs. They couldn't be more different. The tumor appears to be totally gone.

What is really amazing about this is, there is no published literature on an esophageal tumor going into remission with chemo only. He has a patient with stomach cancer that has had the same results. As I have mentioned before, he is the research guy in Lubbock. He is using some drugs that are still trial drugs, the cocktail is one that he mixes himself. So for us, great news, for him a possible breakthrough. For most it is a miracle. I am so grateful that we stayed home. We knew we had the right guy when we found him.

This does not mean things are easy street for John. The plan is to continue the protocol. We will start with chemo and radiation 5 days per week for 4-8 weeks, depending on how things work out and how John tolerates the treatment. There will then be a break of 4-8 weeks and then surgery. The latest suggestion is to go to a surgeon at Baylor in Dallas. A surgeon here recommended him and told us she works with him all of the time. He is board certified in abdominal oncology. She could do all the follow up here and we would not have to be going back and forth to another city after the surgery which is a big plus for us. I don't feel it is a good idea for John to fly when his immune system is compromised by the chemo and now radiation. You never know what germs are floating around with all of the people in airports and airplanes and driving anywhere is at least a 6 hour drive from here. Dallas would be the closest at 6 hours........so. Nothing is set in stone but, this is how it is shaking out.

It couldn't be better news. I am sure glad we didn't take a different route. Lubbock's medical system is very well known in our region but, not so much away from here. As always, John is running into colleagues and friends that he has known for years and is being treated well.

Thank you all for all of your support, prayers, meditations and thoughts. This really is a miracle. It is taking a while for it to slowly sink in.

PS We hare getting the MRI on his brain because he has taken a few falls lately and we just want to make sure that there is nothing wrong there.

Keeping on, keeping on

We are holding up OK. John is tolerating the chemo much better these days. We have a test on Monday that will tell us if and how the tumor has responded to the treatment. In a little over a week, he will start radiation treatments that will go on every day 5 days a week for 6 weeks. Then tests again. I go from being OK to being on the verge of a nervous breakdown. John just goes along, sleeps a lot and can't remember much.

New setback

Well, I will make this short. When we went in to get chemo on the designated day, I think I told you that his port was blocked and we added daily shots to help open it. The next week, when we went in, the port worked great. When we went in on Thursday for day 7 chemo, it was blocked again. We were sent straight to a surgeon's office. He scheduled us for surgery yesterday morning. John had the port surgically removed and a new one put on the other side. When he was awake enough, we helped him into the car and took him back to Arrington. He got his chemo. Two very long, tiring days.

His new chemo day will be on Friday since it has to be done every 7 days. His son Jeff will be here on Thursday. Jeff, this means you will be here on a chemo day. John is doing OK, he has lost most of his beautiful hair. We (or, I) had major challenges yesterday with the insurance company. It brought me to my knees. We are now just hanging in until the next thing.

Charles and Franny come to visit.

John's son, Charles and his daughter Franny arrived today. We watched Freedom Writers tonight. John is doing really well considering this is day 3 after chemo.

Another hard day: Arrington and Lil

When we walked into Arrington yesterday at 10:30 AM yesterday, we knew that we would be there most of the day. Dr. F is out of town for a couple of weeks and had left orders before he left. When we checked in, I asked if we should go to the blood lab while were waiting to see the PA and the nurse. The girl at the front desk told us that there was no order for blood work this week. I told her that I knew we were here to check to see if his port had opened over the past 7 days. Whether is was open would determine if John had chemo. She told us she would check, we went to sit until we were called. We waited. And waited. And waited. Around 11:15 I went back to the front desk and asked the young lady if we could just to ahead and have the port checked while we waited to be seen by the PA. She got on the phone, could not talk to the nurse right then because she said they were "slammed" back there. So, we waited. And waited,

John had been fasting, in case that is what they wanted for his blood work. We found out that he doesn't need to come in fasting. It was now somewhere around 12:30. I went back to the desk, explained that John had not eaten and I needed to tube feed him and did they know when we would be taken back. I also explained to the young lady that the main reason that we were there was to see if the port was open. I pointed to the blood lab and explained to the young lady that we were 20 feet from the lab, they did not look busy and could they just get us in there real quick to check the port.

One of the nurses came out to take us to an examination room so that I wouldn't have to feed John in the public area. She told us she was sorry that they were running behind, the PA would see us and we should wait in the room. I explained to her that we just needed to check to see if the port was open. That was the reason that we were there. She said that she would look into it and left the room.

I fed John. The room felt cold to John and very hot to me. I walked over to the chemo treatment area to get some blankets. I am starting to know my way around the place, pretty well. I left the examination room door open. After a while, someone shut the door. Around 1:15, I opened the door again. It was feeling claustrophobic in the room. A few minutes later, the PA stuck her head in to shut the door. I asked her to leave it open because the room was stuffy and I was feeling claustrophobic. She told me that she had to talk about some patient, out in the hall, and she could not have the door open in case we overheard her. I asked if we could go have the port looked at so that we could start chemo. She said she would be back in soon.

The nurse came in to do the preliminary questioning before the PA came in. I again, asked if we could just go over to check the port while we were waiting since we had already been there 3 hours and this chemo took about 7 hours to administer. She said that we would have to wait for the PA. The PA came in. She started asking John questions about how he was doing, how much he was eating and how he had been feeling. He told her he felt fine, better than a long time, he told her that he was eating a lot and that he had no pain or discomfort. I butted in to correct some of his answers since they were totally incorrect. She asked me if I had a problem with her. I told her no, I just wanted her to have the correct information. I said right in front of John that his answers were incorrect. She attempted to put me in my place by telling me that John is a doctor and that medical protocol was to talk to the patient and then to ask the family member if there is anything they wanted to add. I zipped my lip while she examined John and she continued to ask questions. She did not ask me if I wanted to add anything. I explained to her that Dr. F wanted us back in order to see if the port was open and if it was, to get chemo. If it was closed, he has written orders about having a surgical replacement and I told her what doctor that he had it set up with. She told me that none of that was in the orders. Again, very eager to put me in my place. I was not a happy camper with her bedside manner. I became very quiet.

They then FINALLY sent us over to have the port checked. The very sweet lab tech found blood immediately. We were then instructed to go back to see the PA again. By this time, I had had all I could enjoy from this visit. I have the managing nurse's number in my phone, I paged her and asked if she could come to talk to us. By the time she got there, we had been told that all was great for John to get his chemo but, since it was already after 2, it was too late to start and we would have to come back tomorrow for the long treatment.

When Christi arrived, she escorted us to a conference room so that John and I could tell her about our morning and part of the afternoon, at Arrington. She didn't really like what she heard and told us she would be right back. Five minutes later, she came in and told us that John would be getting his chemo and there would be a nurse that would stay a little late to make sure that he got what he needed. She also told us that we would not be dealing with this PA again. Apparently, the PA has put in her notice and today was her last day. She does not like working with cancer patients and their families. That was pretty apparent to me when we were with her.

I went out to get a late lunch for us. When I got back, Dr. F's nurse tracked me down to give me a few syringes. She explained to me that since John had this clot, we now have to give him a shot in his belly every day for the next 6 months. She had already called the pharmacy to see if they had the injections in stock. They did not so, she gave me enough to use until the pharmacy can get them in. She was very nice and very helpful. So, this is a new thing added to the routine. Shot in the belly everyday, six months. OK.

A nice story to add, Christi told me that she had worked with John many years ago when he was delivering babies and was doing surgery. He usually had most of the prep work done in the room rather than the surgical area like a lot of surgeons ordered. She told me that she didn't like it very much and once asked him why he did it that way. John told her that it was much easier on and more comfortable for the patient by following this protocol. She said that then, she got it. She told me that he was her most important teacher in the area of working with the patient to make a stressful situation easier, if at all possible. She was so complementary of John. I am always so happy to hear these types of stories. Since I have never been closely associated with his career and he has never been one to socialize a lot, with his colleagues, I have not heard many of these until his retirement party and now, being involved with the hospital and Arrington. Several of the nurses that administer the chemo know John and have worked with him. They all are so kind and always compliment how he has always treated both patients and nurses with the upmost respect. She told me that she was really glad that I had called today's problems to her attention and instructed me to call her sooner if another situation pops up, along the way. She told me that when she gets sick, she wants me to be with her and be her advocate! I was very relieved to hear her tell me this. I know that I can be very abrupt and certainly can be tenacious when I don't think things are going the way that they should. I always worry about who's toes I step on, afterward. She assured me that I did the right thing and that we should never be put off like we were today, ever again. Another example why I am glad that we are here. I don't care where one is, or what facility is out there or how famous they are, medicine is not run the way it used to be. The government and the insurance companies have made sure of that. I guess that how young doctors are trained is different now, as well. At least here, we know people or people that we know, know people and it is easier to maneuver around this nightmare that we call patient care, or managed care, these days. By the way, the computer system is still giving them lots of problems in the out-patient area. The system is set up for in-patient information.

We left around 7 PM. We came home and collapsed. We found something to eat and went to bed. The day had been hard and the day before had been even harder because we had our sweet Lil, our 12.5 year old Mastiff, beautiful and nation wide show dog, put down. She was born to us. She was Lucky's mother. The night before we had to put her down, she was very sick and running a high fever. I had soaked her pads in alcohol and packed her with ice packs, the fever did not come down. I called Allison, and as usual, she was Johnny of the spot. John, Allison and I could not lift Lil with the stretcher. (She weighed probably somewhere around 175#-180#.) With John's clot, I didn't want him to try to lift her because I thought it could be very dangerous. I don't have the healthiest bones on earth so, I called our next door neighbor, Dr. David McCartney. He came straight over to help us get her outside so that I could give her a cool bath with a water hose to help get the fever down so she would feel better. Thank you, David. Mission accomplished. Allison and David carried her back into our bedroom and put her on her nice, foam bed. Lil went to sleep, slept very well all night, no high fever for the rest of the night. On Wed, our vet, Dr. Carl Clary came over to put her down. The crematory people were here before Carl arrived. We agreed that though we liked one another, we didn't want to see each other again for a long time. This is the 3rd time in 4 months. Lil went very peacefully, her head in my lap. It broke our hearts, John, mine, Allison's and the vet, Carl's. It was absolutely the right thing to do and it was her time. It is just a difficult process to go through.

Anyway, this is an interesting journey. I have learned that there are days when we both feel absolutely nuts, days we can't remember much, days when our actions and reactions are different from what they would be under normal circumstances. We are quite grateful to those who help us and those that understand when our behavior is unpredictable. Thank you Allison, for monitoring us in that area and helping when I am in flip out mode and when John is in La-La land. Same to you, Johnanne. You will show up at midnight, if I need to talk. I will tell ya'll one thing I have learned beyond anything else, the saying about the handful of friends is absolutely correct and sometimes it is a surprise just who those are. Thank you, Pat G. For what, you are aware. Thank you all for your thoughts, prayers, emails and generally caring about us.

So far, John has not gotten sick. He is his usual fatigued person. His son, Charles, from Austin, will be here tomorrow with his daughter, Frannie. Charles is the one that gets projects done. We definitely have some of those that neither of us can do. I think he may stay until Tuesday or so. The longer, the better, as far as I a concerned.

Very sad news

We decided tonight to have Lil put down tomorrow. It's been a pretty emotional night. I am off to the bathtub and to drink the chalk.

Things are looking up.

I looked back to see when the last update was sent and was really surprised to see it has been since July 3. So much has happened since then. I will recap, somewhat.

On the 4th of July, in the afternoon, John's fever got higher. I called the doctor, it was the weekend and Dr. Shalaby was on call. (The doctor that had gone to Egypt.) He was pretty insistent that I take John in to the ER. My friends Johnanne and her sister, Jan had been at the house for a while helping me with some things. Alice was also there. We gathered a few things up, Jan went home and Johnanne followed us the the ER. I called to tell Allison that we were on our way. Allison was out of town on a fishing trip. She told me when we got there, for me to go in first, tell the front desk that I had a cancer patient with me that was running fever and had been on very aggressive chemo. She said that would get us in very fast. It worked like lightening! An attendant followed me to the car with a wheel chair. Johnanne walked up about that time and offered to park my car so I could go on in with John. We were taken straight in, to Pod (was it 6 or 9?). It was all the way to the very last part of the ER and they put us in the back corner. I don't think we could have been more isolated. This was a really good thing since chemo patients have compromised immune systems and exposure to bacteria and viruses could be very dangerous. There are lots of those floating around an Emergency room. We knew the ER doctor and he was quick to get to John and start running tests that Dr. Shalaby ordered. It was not dark when we left to go, so I would think it was somewhere around 8PM. Alice knows the dogs and the house in some ways better than I , she offered to spend the night with the dogs. Thank goodness she did. According to her, the fireworks were much worse that night than the night before. The dogs were traumatized. We communicated on the phone and I was successful in guiding her to tranquilize them enough that a loud TV would drowned out the firework noises that scare them so much.

After several tests, I asked if we would be staying the night. The ER doc said, "I don't think that John will be going anywhere tonight other than to a room. A couple of doctors that are friends with John heard that he was in the ER. They were called in for other patients and stopped by to check on John. This was another experience that told us that we are in the right place and it was good not to stay at Mayo in Scottsdale. Sometime around 2:30 AM, we were taken to our room. Johnanne and I drove and an ambulance had to transfer John to the Lakeside campus. That is the hospital that has the oncology floor. The Covenant system is quite large, here. The room was small but the nurses were incredible. Johnanne stayed the entire time and went to the room with us to help get John settled. The room was unbelievably hot. If I adjusted the temperature to 70 degrees, it turned off. If I set it at 60 degrees, hot air blew out. The IV machine that was hooked up to John was very loud and kept going off about every 10 minutes. Or more often if John moved his arm. The way the room was set up, the beep was next to the head of the couch/bed on which I was trying to sleep. Johnanne had left around 3:30 AM. The loud beeping had both John and me buzzing. We were so tired, it was early morning and there was no sleeping with that obnoxious sound.

I went to the nurses station around 4:30 and told them how hot the room was and how loud the machine was. An older nurse walked by and overheard what I was saying. She said that the whole hospital was impossibly hot. I was really glad to have a backup on this. A couple of minutes later, the same nurse brought in a floor fan and helped me set it up. I was so grateful because I was wet with sweat. I don't know when we got to sleep or really, if we ever did. I barely remember but, Dr. Shalaby stopped by and told us we could go home. Dr. Phillips stopped by to visit John since he was in the hospital seeing patients. I think word passes around that hospital faster than anyplace on earth. Sometime around noon, we were released to go to the house.

On Monday, Dr. Figurrero's office called to check on us since they had heard that we were in the hospital over the weekend. I told the nurse about what meds Dr. Shalaby had prescribed and Dr. Fig. immediately changed them and put him on something else. John continued to have a pretty rough week. On Thursday, we went to Arrington to have the constant pump removed for the week. This was the beginning of his week off of any treatment.

On Friday, Denise, John's daughter, and her family came to visit. They stayed until Sunday morning. We had a great visit. John was weak and was easily tired but, he was so glad to have them here. The kids were great. They swam and their cousin, Chandler spent the night. On Saturday, Debbie, Gary and the Lubbock Dickey Chicks came to visit. John was tired but was really happy to have his daughter and 5 of his grandchildren here.

Fast forward to the next Thursday, which was last Thursday. We saw the Doctor. He was pleased with how John looked and with how is blood levels are. We then went to start the Chemo. The nurses could not get blood out of his port. For those that don't know, the port was surgically placed in his upper left chest in order to always have a line to deliver the chemo. This is done so they wouldn't have to stick him with a new IV every week. The nurse tried and tried to get blood to come and never could. The doctor wanted us to have an xray done. We had now been at Arrington for about 2.5 hours. We walked down several hallways to get to radiation. The lobby was full. We were told there that in order to have an xray, we would have to go to admissions. I explained that we had been in the building getting blood, seeing doctors and trying to get chemo for some time and I didn't understand why we had to be admitted. The girl told me that this is the way it is so, we went to admissions. I asked the admissions person if there is now a system wide computer, why in the world would we need to be admitted and show John's insurance card, list of medications, and all the other question that they asked since he has been a constant patient for so long. She didn't know but agreed with me that all of this is pretty inefficient and extremely stressful on patients and their caregivers. After some time waiting, a man that works in admission, spent about 2 minutes with John and sent us back to radiation. The girl at the window asked if John was on any medications. By this time, I was tired and was irritated that she wanted the 4 page list. That ANYONE wanted it AGAIN!! These must have been put in the system wide computer system, at least 10 times. I guess my body language told her that I didn't have the list with me and told me never mind. After 30 minutes, John was called back for his xray. The lobby was still pretty full. About an hour later, someone came from the back to tell me that it would be a while because it appeared that John had a clot in the port and they were waiting for the doctor to call back. Another 30 minutes went by and John came out. We went back up the halls to Arrington We were told it was too late to do the chemo even if they could open the port, since the procedure takes a minimum of 7 hours.

We saw Dr. Fig. again. He apparently had been on the phone to see if someone could surgically replace the port. It was late in the day and he could not find anyone that he wanted to do it.. He also is hesitant to expose John to a surgical procedure due to his compromised immune system. He had his nurse give us a weeks worth of injections, to be given once per day, in the stomach, to attempt to open the port chemically. If that doesn't work, John will have to have anesthesia in order to change the port out. We will find out about that this coming Thursday.

A little side story. Yesterday, a woman that bought one of Lil's puppies from us, 9.5 years ago, came by to visit with the now totally grown up, Gracie. She was living in Menlo Park, CA. when Gracie went to live with her, they then moved to the Denver area. She has just taken a new job to run a small software company in Austin. She wanted to stop by since she was driving through Lubbock. Gracie is a litter mate to Lucky. They came about 8:30 AM. Allison came, too. Allison was at our house when Gracie left to go home with the women that bought her. We took pictures, and had a very nice, if short visit. Allison stayed and helped me for 7 hours getting through some paper work and helping me to get our bills paid. Thank you so much, Allison. Paper work is my hardest task. You made if very tolerable and you helped me solve some problems that needed solving.

This past week has been not bad for John. He is feeling a lot better since he is not on the chemo but, he still gets very tired very fast. We have wonderful next door neighbors that have 2 sons that mow our yards for us. They came today. I bathed and dried and groomed the dogs which took several hours. Nash has a lot of real estate covering his body! John kept up with what was going on by checking on my project and helped the boys some, with theirs. By the time we finished, around 7:30 or so, John was very tired. I gave him his evening meds and tube fed him. He went to bed. We still have several days before we go back on Thursday. I am glad to see John feeling better but, it is very hard on him to not be able to work around the house. What he loves to do more than anything is to work. He loves yard work. It is very frustrating for him. I understand that but, it worries me for him to push himself because of the clot.

Today, John and I had an appointment with an insurance person. We accomplished getting him off of Cobra and getting him registered with a Medicare supplement policy. That cut back on a big expense. I now have to find insurance for me since Cobra is so expensive. After the appointment, we went to have Mexican Food at Garcia's which is our favorite Tex-Mex restaurant. After our late lunch, John wanted to go to Barnes and Noble. We had some gift certificates left over from Christmas. We spent a couple of hours there. It was the most normal day we have had in months. It makes a big difference when some time passes without the poisons being put in his body. We bought a few books, came home and both of us collapsed. I sometimes wonder why I get as tired as he does. Seems like I should have a lot more energy than he does but, some days, I don't.

I appreciate all of you very much. There are quite a lot of you that have been inquiring since it has been a while since I have written. It seems the days fly by. I am doing a lot of the things that John used to do and I let the time get away with me. I will try to do better and keep you informed more often. It is really great knowing that we have such great friends that care so much. Keep those phone calls, emails, cards and thoughts coming in. It is remarkable how much they help.

Back on track

We go in the morning to start the treatments again. I expect to be there about 7 hours if it is like week one, last time.

Denise's visit

Denise and her family visited this weekend. We had a really good time. Both of us were tired when they left. John has only had a little nausea. Other than being very fatigued, he is doing pretty well on his week off. We go back on Thursday for another 7 hours of Chemo at Arrington and they will hook up the portable infusion pump again.

Our peach tree is full of peaches, I have no idea why they are so late, in our back yard. Everyone else's came in weeks ago. I have given away a couple of bushels and have a couple of bushels sitting on my kitchen counter. I plan to slice them and put them in the dehydrator. I hope I get all of that done. They are really delicious this year. I still have apricots coming and a few Thompson Seedless grapes. This is the fifth year for the trees and the vines. I knew it would talk 5 years for the grapes, I didn't know that the trees would take this long to give such a good harvest.

Long day at Arrington

As I begin to write this, it sounds like a war zone outside our door. We are out of the city limits and one of our neighbors has been firing VERY LOUD rockets for a few hours. The dogs are a nervous wreck even though I have given them Benadryl. I can't wait until tomorrow.

We went to Arrington again today for John's weekly chemo treatment. The place was very crowded and checking in took much longer than usual. Apparently, Covenant has decided to start using a new computer system. It is being used company wide. There is one problem at Arrington. (Are you paying attention, Jackie?) The computer system is set up for the hospital and not for out patient care. I had seen the problems everyone was having on Monday, when we changed out John's infusion pump and port. But, we went straight back to see a particular person and did not have to check in. Today, it took over an hour to get the lab work done. Then it took until 3PM for us to get back to the treatment room to start the chemo. The staff were incredibly busy and frustrated trying to figure out how to document everything as required and to take care of the patients.

While waiting in the lobby, John got very cold. I found a couple of blankets to cover him with but, he was still very cold. One of the nurses came to tell us that John's values were very low and he may not be able to tolerate the treatment today. He was also running a fever. She went to talk to the doctor. His suggestion was, since this is the last in this series, he needed to go ahead.

I found a sandwich for John since we had no chance to eat between our appointments. Shortly after the treatment started, John started to shake. He was shaking and shivering all over. I brought him two more blankets. They didn't help. When I told the nurses about it, they brought microwave heated towels and heated blankets. The shivering never stopped.

John has been having a lot of pain in his head, shoulders and neck. Today it got much worse. The doctor ordered Darvocet but, it didn't arrive from the pharmacy until we were ready to leave around 5:20. One the way home, we stopped for more meds that were prescribed and finally arrived at home. John was in a lot of pain and very uncomfortable. I gave him his evening meds and he went to bed. He has been resting all evening. He is very confused and doesn't remember much. They are just slamming him with this poison. He will be using the infusion pump for one more week and then he gets a week off. I am hoping that he will have a decent break and start to feel better before he starts all over again.

Most of our support group is out of town this weekend. Honestly, I am a little nervous about that but, I can't expect people to be here all of the time. I appreciate all of you that are keeping us in your thoughts and prayers. This is a very difficult experience.

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.