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