|
Fri. -
5/28/04
7:59 PM - My quiet, beautiful, and courageous wife Marge
took her passion for life, making quilts and quilting to a higher level.
I know she will be missed by many besides me.
Morning after thoughts... Marge's
Memorial Wishes Tributes to Marge
Again it was a rough day while we waited for Marge and
her strong heart to decide when it was time to go.
Also again were also some good moments through the day.
Her closer friends and quilting buddies continue to stop by an sit with
her for a while. The afternoon also brought some pleasant
surprises. The wife of a couple we knew through ham radio 30+
years ago was in town from OK and stopped by to see Marge. Flowers
arrived from the family of our original next door neighbors from 30+
years ago when we moved into the new tract. These were the ones we
religiously played cards with every weekend until he retired and moved
away. The afternoon also brought a small mystery. A Wine
Country Gift basket arrived but I didn't recognize the name of who it
was from or could find them in our customer data file. But Marge
always met and knew more folks than I. However, I believe it is
from RJR Fabrics because it was contained a note of love and prayers
from Demi, Kyle and the entire RJR family. I know Marge would have
appreciated the thoughts.
|
|
Thu. -
5/27/04
She's still with us.....barely, but resting
comfortably now.
It's been a terrible gut-wrenching 24 hours.
Several times I thought she was gone but she was not ready to go.
Most of the time she's been in a deep sleep because of the drugs.
But there also have been a couple of times when she woke up and carried
on a brief conversation with those around her. Of course there
have also been some rough awakenings when she said she couldn't breathe
and had to be restrained because she was going to get out of bed and go
outside to get some air.
There were also some good moments during the day.
Several friends and her quilting buddies stopped by and sat with her for
a while and although it wasn't obvious she knew they were there, they
say the hearing is the last to go so I'm sure she was aware of their
caring. Once after a panic attack when she calmed down I was able to
read her some of the notes from the LA community and she said to be sure
and thank them all. I was also able to let her know of a couple of
our out-of-state customers had called to check on her and wish her well.
I was also able give her a summarized message from our LA French
connection -- Simone. It was not long after that a package arrived
from Pam Clark with an antique quilt. Marge had given Pam a couple
of antique tops the she picked up somewhere and Pam quilted one for her
in return for the other. Marge remarked what a beautiful job that
Pam had done as we covered her with it.
It was also a day I almost wanted to go Postal on the
hospice folks. Earlier in the day Marge was having trouble
swallowing so we could no longer give her the oral morphine. So
just before noon, friend Kathy, the doctor, said to call hospice and
order and IV for the morphine. When we finally got through and it
was approved, we then were told it would be 2-4 hours before the pump
and medication could be delivered. Long story short, the pump
arrived around 2, the medication around 4 and the nurse to set it up at
5.
|
|
Wed. -
5/26/04
Another relatively quiet day with a few close friends
and relatives stopping by. Her day was brightened by the arrival
of flowers from the King's and a long-distance call from the Brown's in
Australia. However since around 1 she's really gone steadily
downhill. Although her heart is strong, her lungs and body are
just tired of the long fight. We thought we had lost her around
6:30 PM when she had a panic attach and said she couldn't breathe.
But getting her into a wheelchair and outside (she's also
claustrophobic) on bottled oxygen, plus a med they gave us for the
anxiety, we were able to calm her down and got her back into bed where
she's now sleeping peacefully. Her friend Kathy, the doctor,
thought she might make it through the night and went home but will be
back in the wee hours or the morning. But we both believe the end
is not far and believe it's now just a matter of when she wants to go.
|
|
Tue. -
5/25/04-
5/25/04
A quiet day with only a couple of visitors. That
was good because yesterday really wore out Marge because she was forcing
herself to try and talk to everyone that stopped by to visit.
Today she was very weak and slept most of the day. We lost ground
on getting her to drink -- only 1/2 of a small glass -- and only a
couple of bites of yogurt in the morning.
Note: My Netscape browser/email
program crashed and I lost all email received between the 17th and the
25th -- based on my last total system backup. So if you sent a note in
this period, please send again. Sorry.
|
|
Mon. -
5/24/04-
5/24/04
Another day with only a few things
to report. Because of her weakening condition she's almost
completely bedridden now. We were able to maintain the same liquid
intake as yesterday but we could not get her to eat anything. The
nurse came in the late afternoon and was a little encouraged by her
liquid intake but was concerned with her low blood pressure and higher
heart rate.
Several things brought smiles to her face today.
First we had a house full of friends and relatives almost all morning
and about half the number in the afternoon. She still is amazed at
how many have reached out to tell her how much they appreciated her and
wished her well. The mail brought additional get-well cards and a
box cookies. Also arriving today was a large flower arrangement
from members of the MQS picture crew. He other sister from CA also
returned today so the three of them will be visiting into the evening.
|
|
Sun. -
5/23/04-
5/23/04
Well we made it through the day with only a few things
to report. This morning at 5 Marge seemed to rally a little and
announced her goal for the day is to sit up for a while and then at 7
she added she wanted to try and take a shower. Both were considered
good goals in light of her condition the days prior. However, it
took three of us to get her into the shower but the worst was how much
energy it seemed to take out of her. So we'll got back to the
sponge baths for now.
The other positive for the day was that his morning she
wanted to try and go back to the earlier pain meds because the morphine
was making her sleep too much. That seemed to work well until late
in the afternoon so we may alternate them to through the day.
She also brightened again in the evening when her older
sister from FL arrived for a visit.
On the negative side of the equation she's continuing to
get weaker because she's not eating very much. We did gain a
little ground on the liquids side and today she consumed 5 small glasses
of different liquids.
|
|
Sat. -
5/22/04-
5/22/04
Again nothing much to report. With the use
of the morphine for the pain, Marge rested comfortably most of the day.
Several of her quilting buddies stopped by briefly and she enjoyed those
visits but was not able to talk too much. Her friend Kathy, the
doctor, was here most of the day and Marge told her she thought she
would make it through the night and would see her in the morning.
She also brightened a little when I told her that her sister from FL
would arrive Sunday evening for a visit. In spite of the heavy
pain medication she's just a feisty as ever and gave me h*** when I told
her I was going to play a couple of my favorite movies -- "Last of the Dogmen" and "Dances With Wolves" -- I always put one of them on in the
past when she complained about the satellite TV programming..
|
|
Fri. -
5/21/04-
5/21/04
Not much to report. Marge continues to
weaken and isn't able to eat or drink as much as a few days ago.
She's also experiencing more pain and we've gone from the original pain
medications to morphine. My sister from NM arrived and is
relieving me a lot. She watches Marge through the day and I take
the night watch. Our friends and her quilting buddies continue to
stop by for short visits because she tires quickly. But the visits
do brighten her day so they are appreciated.
|
|
Wed. - Thu. -
5/19/04-
5/20/04
It's been a rough couple of days for Marge since the
chemical cauterizing procedure. That's caused some swelling and
her throat is now really sore. The ENT doctor said it would last a
couple of days but she still has a little bleeding so the throat is
really doubly aggravated. As a result, she's had trouble eating
and drinking anything except things that are very soft or liquefied in
the blender. About the only thing we've found that really helps
sooths her throat is the breakfast drinks with whole milk that have been
further fortified with bananas and strawberries. She's also been
able to eat a little of the old standby watermelon.
Wednesday her energy level dipped to a new low and she's
now unable to walk around the house even assisted and we're using the
wheel chair to conserve the little strength she has.
This morning she was just a little better than yesterday
and we quietly celebrated out 37th anniversary (really special to me
because a couple of days ago I didn't think she's make it until today).
Of course I managed to catch hell because I got her some roses.
The last few years she's insisted on flowers that could be planted -- of
course she's not the one planting, watering or weeding :-).
Anyway, after she gave me hell, I managed to get a smile out of her when
I read what I put on the card -- "I'll plant them!!"
|
|
Tue.
5/18/04-
5/18/04
Marge had a bad night and early morning with her
coughing up blood. I did managed to get her to eat a soft boiled
egg on toast for breakfast. After that we took a long time to get
showered and dressed because she was so weak. We hit the road
again at 10 AM for scheduled blood work and chest x-rays followed by
appointment with the ENT doctor to see if he could do anything about the
bleeding. The ENT doctor examined her and said the bleeding was
again coming from the tumor and he believed he could stop it using
chemical cauterizing. Marge agreed and the doctor went in through
her nostrils three times to do the procedure. Needless to say,
following the procedure, Marge was exhausted and only wanted to head
back to the house. The ENT doctor said to call (provided the
direct line to his nurse) and come in any time if Marge continued to
have problems. So we skipped the scheduled chest x-ray and will
try and do that when Marge feels well enough to travel again.
The afternoon and evening was quiet with Marge resting
comfortably with the help of pain medication. Her throat was very
sore from the procedure but it seems to have stopped most of the
bleeding and the pain was helped and soothed by a little ice cream in
the early afternoon.
|
|
Mon.
5/17/04-
5/17/04
There's not really too much to report. Monday was
almost a complete repeat of previous two days.
Marge says her throat hurts and refuses to eat or drink almost
everything. Her total solid intake for the day was about 1/4 of a
sandwich and 1/2 cup of soup. As far as liquids, I was able to get
her to drink a cup of hot tea with honey, one glass of juice and two
small glasses of cold tea. She got nasty whenever I tried to
encourage to eat or drink more.
I was concerned enough with the way things were going
that I called the hospice nurse early in the morning and she stopped by
around 10. Marge then proceeded to tell her how much better she
was feeling and promised her to try and drink more. The nurse
suggested, and Marge agreed, going back on the 2-hour feeding and
drinking schedule we were on when she first came home from the hospital.
That agreement lasted until the nurse left....
|
|
Fri. - Sun.
5/14/04-
5/16/04
It was an couple of rollercoaster days with Marge and
things are not looking good.
On Friday the hospice doctor visited and took her off some of the meds
she had been taking and gave her prescriptions for five new ones.
Two of these were stronger ones for pain, two different ones for her allergies and
nausea, and one for her sore throat and cough. The afternoon and
evening went relatively well but she's still wasn't taking in enough
solid food regain her strength from the latest radiation treatments.
She's also still not taking in enough liquids and this is causing other
problems.
Saturday morning started off really bad around 1:30 with
Marge coughing up a lot of blood. I wanted to take her to the ER
but she refused because of previous experiences with the hospital. The more she coughed, the worse
it got and only subsided with her taking one of the new pain meds that
basically put her to sleep until around noon. When she finally got
up she was in a terrible mood and said to tell the doctor she wasn't
taking the new pain med any more because it made he sleep too much.
The hospice doctor was called and told of the early morning problem and
Marge's opinion on the new meds and a new med plan was negotiated for
the time being.
Sunday started off as a repeat of Saturday morning and
Marge is still refusing to eat or drink and sleeping most of the time.
|
|
Thu. - 5/13/04-
5/13/04
It was an emotional and depressing day with the entry of
hospice into the picture since Marge is a retired nurse and knows the
implications of their presence. In the morning the hospice
evaluation nurse took us through their program orientation, we signed
the necessary paperwork, reviewed and changed some of her medications
and a hospital bed and other equipment was ordered to be delivered to
the house that afternoon.
Medically she did a little better with the end of the
radiation treatments and those side effects. She's still not
eating or drinking enough and quickly gets annoyed when you try and
encourage more of either. |
|
Wed. - 5/12/04-
5/12/04
Nothing much to report. I don't know if it's
because the radiation treatments are finished, the new drugs, or some
combination of the two. But Marge slept comfortably most of the
night and through the day, except for eating and a shower.
Hospice called and the initial evaluation visit is
scheduled for this Thursday morning. |
|
Tue. - 5/11/04-
5/11/04
It was an exceptionally bad morning with Marge really
having severe nausea and
a pain in her stomach. Again it was bad enough that it took some
convincing to get her to agree to go to 9 AM chemo doctor appointment
and then her 5th and final radiation treatment at 2 PM.
During the chemo doctor appointment, there was some
discussion about the double-vision and the agreement between the doctor
and her friend Kathy, that the radiation treatment might have caused
the paralysis of one of the nerves to the left eye. When he gave
he the finger-following test her eye would follow ok to the right but
would stop tracking straight ahead when the finger was moved to the
left.
Following the chemo doctor appointment and a brief rest at
home we were on the road again to Los Angeles for the final radiation
treatment. After the treatment we met with her doctor and he gave
us two new prescriptions for stronger nausea medications. He said
to try one first and if it didn't work to get the second. He
released Marge from his care but said to immediately call the chemo
doctor or go to the ER if she appeared to be having any symptoms similar
to those she had prior to needing to go to the ER and receiving blood
transfusions.
Although she said she never wanted to see it again we
brought home her "Luke Skywalker" mask. It reminded me of the face
of Hans Solo when he was entombed in the wall of carbonite -- can't
remember for sure if that's what it was called. Anyway, the mask
is molded to her face and head for the targeting of the radiation.
Being claustrophobic, wearing this mask was almost the worst part of the
treatment. The worst part was during the treatment when the mask
was bolted to the treatment table so her head couldn't move. |
|
Mon. - 5/10/04-
5/10/04
In the morning Marge was still suffering from severe nausea and
pain in her stomach. It was so bad that she wasn't sure she could
make it to her radiation treatment. But my noon the condition
diminished enough that she could eat some lunch and then we made it to
the 5th treatment.
Hospice was contacted and they will be visiting us later
this week for their initial evaluation. Sad day in that respect. |
|
Sun. - 5/09/04-
5/09/04
Not really much to report. Marge's condition
seemed to take another turn in the morning and had severe nausea and
pain in her stomach. Since it was two days since her last
radiation treatment, we weren't sure what was causing the problems
except those are some of the side effects of the new drug. But
she's also taking something for the radiation treatments that can also
produce the same problems. By the late afternoon she was feeling
much better and was able to eat a little. |
|
Sat. - 5/08/04-
5/08/04
Not really much to report. Marge's condition is
much the same as Friday. But she's now well enough to talk on the
phone and the both of us were on the phone over an hour with my sister
getting the details of my mother's funeral and the relatives that could
make it to Carlsbad. |
|
Fri. - 5/07/04-
5/07/04
Marge felt better today than she has for a long time.
When she woke up her headache was gone completely and no nausea.
She still had the double-vision problem but that's slowly getting better
with the use of the patch over her left eye. The bleeding in her nose
seems to have stopped and we'll probably have the suction machine picked
up early next week. Marge was feeling well enough by the end of
the day that she was able to help make dinner.
In the early afternoon we drove into Los Angeles for
radiation treatment #3. The treatment was uneventful except a
vertigo problem she had when she got up from the table at the end of the
treatment. This was caused by the removal of the patch during the
treatment and it subsided after it was put back on. |
|
Thu. - 5/06/04-
5/06/04
Another long day. But today it was only 8 hours for the
transfusion at the Anaheim facility and then the drive into Los Angeles
for the radiation treatment and then home.
Marge was feeling much better today. The headache
she had is gone and she's not as nauseated like yesterday. We
thought this headache and nausea was caused by the double vision so
Marge covered one eye with a patch to prevent her from seeing out of it.
The bleeding in her nose has almost completely quit and best of all,
she's hungry... Amazing what a couple of units of good blood will do for you.
Contacted the chemo doctor about the double-vision problem
and he said to discuss it with the radiation doctor. Met with
Marge's original radiation doctor because the new one was not available.
He said the double-vision was caused by the radiation and it also would
have been causing the nausea. Then the big Oops. He said
that Marge should have been taking Decadron to keep from having both
problems. When we told him we had not been given a prescription
for the drug, he gave us one for it and something for her stomach
because the Decadron would cause it to be upset. |
|
Wed. - 5/05/04-
5/05/04
Another day of total frustration and stress dealing with
the medical industry. We left the house at 7:30 in the morning and
finally stopped running at 7:30 in the evening.
Marge was still having a headache behind her left eye
despite the removal of the nose packing. On top of that she was
also nauseated and wouldn't eat any breakfast because she was afraid
she's throw it up on the trip to Los Angeles.
We left the house at 7:30 for the 8:50 appointment in
Los Angeles and the first radiation treatment on the tumor at the
back of her nose cavity. The rush hour traffic was terrible and we
made it to the appointment with 10 minutes to spare. The treatment
took about half an hour and then the technician went over the schedule
of the next 4 treatments. Thank goodness the rest of the
treatments are scheduled for the afternoons at 2 but then we'll have to
deal with the rush hour traffic in the other direction.
We arrived back at the house just before 11 and found a
message from the chemo doctor that the lab results from the previous day
indicated Marge should contact the chemo clinic and go there as soon as
possible for a blood transfusion. This was the transfusion we
thought she needed the week before but the chemo doctor didn't agree
with. I called the chemo clinic and was told she needed two units
and it would take 4-6 hours for the transfusion. Because Marge was
still feeling nauseated and exhausted from the trip to Los Angels I told
them she needed some rest before I could report in. So they
decided that she would only get one unit of blood and it would take 2-3
hours, with the second the second unit the following morning. They
scheduled the transfusion for 2 PM but we first had to be at the blood
lab by 1:30 for a type and cross match.
Marge was still nauseated and refused to eat anything
before leaving for drive the in the other direction to the hospital.
We arrived at the blood lab at 1:10 and my blood
pressure started to rise for two reasons. First, they initially
refused to do the lab work because Marge didn't have a photo ID with
her. That hurdle was passed when I pointed out that if they
checked their records that we had been there numerous times in the past
4 months and they had never requested anything except her medical
insurance card. The second annoyance was that they couldn't find
any record of the blood that her quilting friends had donated for her
required transfusions.
We left the blood lab and arrived at the chemo lab --
across the parking lot -- at 1:30. They told us they had to wait
for the blood to be delivered and to wait in the lounge area and they
would call us in about 15-20 minutes. An hour later we were still
waiting and when I asked the chemo clinic check-in nurse was going on,
was told they were still waiting for the blood. At 3:30 the blood
still hadn't arrived and I was beginning to wonder if she would get the
transfusion because the clinic closed at 6. I then called our friend
Kathy the doctor for her advice on the situation. She said to
raise hell and to tell them Marge wasn't going home without the
transfusion they said she urgently needed. She further said to
tell them their patient treatment was outrageous and that the
transfusion would have to be given in the ER if they could not give it
before they closed the clinic. At 4 the blood finally arrived but then
another delay because when they checked Marge's temperature it was 101.
So her chemo doctor had to be called and he said a blood culture needed
to be done before the transfusion. They finally started the
transfusion around 4:15 and we left the clinic a little after 6:30.
They said to report back at 8 the next morning for the second unit of
blood. In the meantime, the doctor prescribed another antibiotic
for something indicated in her blood culture (and another drug we had to
watch for possible reactions).
We finally arrived home around 7:30 and in addition to still being
nauseated, Marge was having a problem with double-vision. And because of the nausea,
the only thing I could get her to eat was a little watermelon. |
|
Tue. - 5/04/04-
5/04/04
The morning started off with some more stressful family
news. My sisters in Carlsbad NM called and said that my mother had
passed away peacefully around 9:30. Because of Marge's condition and
treatments we won't be able to attend the funeral.
Marge was still having headaches behind her left eye from
the nose packing.
We met with the chemo doctor in the late afternoon and
the decision was made to postpone additional chemo treatments for a
while and start her on a new drug called Iressa. This decision was
based on the fact that Marge was having such severe reactions to the
chemo drugs and the chemo treatments appeared to be having little impact
on the cancer. They will still be monitoring Marge's blood work
while she's taking the new drug and the doctor scheduled blood labs
every two weeks. He also scheduled a blood lab and X-rays of Marge's
chest immediately after his appointment.
We saw the ENT doctor after the above appointment, lab,
and x-rays to have the packing removed from Marge's nose. He
examined the biopsy area and said that the bleeding seemed to have
slowed down a lot and believed the radiation treatments would cause the
tumor to shrink and bleeding would stop. He scheduled a follow-up
appointment in two weeks.
Before leaving the clinic I almost had the "big one" when I picked up
the one-month Iressa prescription at the pharmacy. Since the drug
was relatively new I was already prepared to leave some of my own blood
to pay for it but was not exactly prepared for the $1730 bill. The
pharmacist said the drug was not covered by our insurance but would call
and check with the doctor for the "exception". A few minutes later
I was called back to the counter and told that the chemo doctor told
them that the Iressa qualified for the "exception" because the chemo
drugs had not worked. I happily paid our drug deductible and my
pulse was almost back to normal by the time we reached home :-). |
|
Mon. - 5/03/04-
5/03/04
Marge was pretty miserable most of the day with a
headache cause by the nose packing. This impacted both her ability
to concentrate on normal conversations and one the phone and her
appetite.
In the afternoon we drove to Los Angeles for the
"simulation" part of the new radiation treatments they'll be doing on the
tumor behind her nose. The treatments will start on Wednesday and go
until next Tuesday. Thank goodness for car air-conditioning!
It was bad enough having to drive the 30 miles to Los Angeles at traffic
rush time but the temperature for the drive in and out was an
unbelievable 107 degrees. |
|
Sat. - Sun. - 5/01/04-
5/02/04
Not too much to report. Marge is still resting and
recovering from the biopsy procedure to her nose area and her throat is
still sore from the procedure. The packing installed during the
procedure is also causing headaches behind her left eye. These two
pains make phone calls from friends and relatives difficult because she
says it's hard for her to concentrate on the conversation. She's
now almost back to being able to eat most of her favorite foods but not
eating too much. |