1-23-2011
A lot has happened in
the last two weeks. Bill has another melanoma in his neck so he will be
going for surgery on Tuesday. Soon we will be going to San
Francisco to meet with Dr, Kashani, who he met two years ago after the first
bout of surgery. They are going to get him into a clinical trial for
Ipilimimab, which is the only thing that is of any use against melanoma.
We are going a bit crazy with all of this. Scared, worried, terrified of
the future. Bill has been feeling really good physically. I have a
lot to do today and tomorrow, because I'm taking the rest of the week to take
care of my invalid.
Love to you and John,
Billie
1-26-2011
Louise and Earl,
I'm sorry I haven't been
in touch about the latest with Bill. Up until ten days ago he was doing
great. Then he found a lump on his neck, just under his non-ear, and
things have been moving along too quickly to keep up with them. He had a
CAT scan of his head and they found nothing besides the lump, but I said he
needed an MRI of his abdomen because he was starting to get some pain where the
liver had grown back. He had the MRI on Monday and went into the hospital
yesterday for surgery to take out the neck lump. We got the results of
the MRI yesterday, while he was in the hospital and they found some
"suspicious lesions" near his liver and some "spots" in his
lungs. We are trying to cope with this, but you can imagine how the
wheels are turning in our heads. He is a candidate for a clinical trial
for the latest melanoma drug, which has been giving good results, but we don't
know if we want to be part of a trial where he might get a placebo. All
in all, we are very worried about his future. I've been picking up other
people's hours at work to save a little bit of money because I knew I wouldn't
be working this week, and if we have to go somewhere else for treatment, I
won't be working very much at all. Between work and trying to take care
of the house and us, I just haven't had the strength to make phone calls.
Email and Facebook is an easy way to get the work out to people.
Meanwhile, he was only in the hospital until noon and Kathy came home with us
to help but there was nothing to help with. He is up and about, and
feeling good except for a little discomfort. I'm so happy to see him that
way. I just hope it lasts for a longer time this time.
We're sorry we weren't
able to see you and Earl while he was here. Again, I put in as many hours
as I could in December to try to put a little money away for the weeks to
come. I am trying not to negative, but I know harder times are facing
us.
Love to you both,
Billie
2-4-2011
I'm sorry everyone, but this is pretty much a
form letter, 'cause I have a lot to do before Monday morning. We met with
Dr. David Minor at CPMC. Bill will be
having some heavy duty chemo therapy (Interlukin II) and bio therapy over the next year.
First, he will be admitted to California Pacific Medical Center for one week,
beginning on Feb 7. Then he will come home for two weeks. That will
happen four times. Then he will have other therapies in San Francisco,
but they will be on an out-patient basis, so we will just drive over for one or
two days every few weeks. I will be staying at the hospital with him, so
it will be another difficult year. I want to hear from our friends via
email, phone and Facebook, but I hope you understand that Bill will be my top
priority, so if I can't talk or return your emails and calls right away, I know
you'll be patient with me. I will get back to you as soon as I can.
I will have my phone and a computer with me at the hospital. I hope there will
be Internet access, but if there isn't, I can do a little bit of emails on the
phone.
We love you and we thank you for your prayers
and thoughts.
Bill and Billie
2-8-2011
Annie,
You and John are
among the small group with whom we are keeping in touch because you are so
special to us, even though we seldom have the opportunity to see each
other. Thank you for the encouragement and prayers from both of
you. Bill had a fantastic night, considering that they told him that the
first night would be the worst because he started getting the most caustic drug
right away, and they taper that one off during the stay. They gave me a
regular hospital bed so I was much more comfortable than I had expected to
be. We went to sleep with our favorite Hawai'ian singer serenading us via
CD on the computer. They come in to check his vitals every two hours around
the clock, but I was able to sleep through most of those. If that was the
worst, he will breeze through the rest of the week (knock on wood.) He
took a walk around the floor after breakfast of ham, eggs and corn flakes, and
I went outside to walk for an hour in the lovely wind, with views of the Golden
Gate Bridge and Alcatraz. All in all, we almost feel as if we are on
vacation.
Love to you both,
Billie
Love to you both,
Billie
Feb 11, 2011
OMG!! Poor Bill. In
the last 93 minutes, here have been 8 different non-medical people in here. I'm
keeping the room clean and take used linens to the linen bin in the hallway,
and NO, we do not want the harp lady to play the harp to relax him. He would
relax just fine if he could have more than 12 minutes without a knock on the
door. I think next time, I'll bring a "Do Not Disturb" sign to hang
on the door.
Feb 22, 2011 3:50 pm
We're just waiting for the last bag of IL2 to finish up and then
we can leave the hospital. Would it help if I squeezed it really hard so it
would run faster?
2-12-2011
We're home. It took less than
4 hours once we got started, after our morning adventure. After a
restless night in the hotel, we came out to find that someone had run into the
side/back of the car in the SECURE parking garage. I called the insurance
company, and they said I had to make a police report, so I had to drive over to
the closest police station, which really wasn't all that far.
But, Bill was tired and a little bit nauseated, so it was a pain in the
neck to have to do that. We finally got going at 8:15 and only stopped
once, to get him a cup of coffee. Other than that, he slept all the way
home. He feels pretty good, just very tired. Let's hope he stays
that way. Now we have two weeks before we do it all again.
Love,
Billie
Sistah,
Oh gosh, just what you needed -- a hit and
run! Doggonit!! Next time you go, stop and get you a big cup of
coffee on the way home as well as Bill. The view from the hospital looks
like it could be on a travel brochure for San Francisco. I was so happy to
hear in one of your updates that you took a nice long walk -- you know I keep
telling you to take care of yourself also. Tell Bill to quit being so
funny and you to quit being the Queen Bee of the place so you both won't be so
bothered next time.
Rest up for the next round..... we'll be
thinkin' and praying for y'all.
XOXO
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| Bendzick's Candy Basket |
Having Chemo
2-16-2011
Dear Ann,
I agree that San Francisco is beautiful. But I don't like driving up and down those hills. I did a lot of walking, keeping the car parked on the street for the whole time Bill was in the hospital, only having to move it once for street cleaning. He has one week there and two weeks home, and we have three more times to do that. Then it will be an infusion for two hours every three weeks for three or four times, and then a shot every three months. He had a hard time for the first three days home, mostly sleeping, but he is staying awake almost all day now. He has a lot of things going on, like rash, acne, itching, pink eye, constipation and diarrhea and a little bit of nausea. We went to his oncologist, here, yesterday. He walked into the room, looked at Bill and said, "Weren't you supposed to start your treatment?" After Bill said that he was there last week for treatment, he looked amazed, and said that Bill looked wonderful for what he had gone through. I don't know if it's good or bad when you feel like crap, but look like you are perfectly fine.
I agree that San Francisco is beautiful. But I don't like driving up and down those hills. I did a lot of walking, keeping the car parked on the street for the whole time Bill was in the hospital, only having to move it once for street cleaning. He has one week there and two weeks home, and we have three more times to do that. Then it will be an infusion for two hours every three weeks for three or four times, and then a shot every three months. He had a hard time for the first three days home, mostly sleeping, but he is staying awake almost all day now. He has a lot of things going on, like rash, acne, itching, pink eye, constipation and diarrhea and a little bit of nausea. We went to his oncologist, here, yesterday. He walked into the room, looked at Bill and said, "Weren't you supposed to start your treatment?" After Bill said that he was there last week for treatment, he looked amazed, and said that Bill looked wonderful for what he had gone through. I don't know if it's good or bad when you feel like crap, but look like you are perfectly fine.
The car is in the
repair shop so we're sitting in the sun room watching TV and watching the snow
come down outside. I'll continue to write when I can.
Love to you both,
Billie
Love to you both,
Billie
3-7-2011
Kathy,
We just heard from Pat about Paul. We are shocked as we're sure everyone else is because he has always been the epitome of health to us. We are praying that he will have a full recovery. Please keep us posted.
Much love to both of you,
Bill and Billie
We just heard from Pat about Paul. We are shocked as we're sure everyone else is because he has always been the epitome of health to us. We are praying that he will have a full recovery. Please keep us posted.
Much love to both of you,
Bill and Billie
Aloha
Paul is doing much better but has a long road ahead....maybe
he'll respond to therapy quickly, but the nurse said emotionally stroke
victims had their ups and downs and will start crying when you don't expect it.
Hopefully this is only temporary. I know you have been stressed to
the max too. Seems like I just walk around in a haze and have to tell
myself to just hang in there. Having the shop doesn't help.
Fortunately Paul's mind is 100% OK as they have been testing him.
So you never know how your life is going to change, do you?
How is Bill doing? Are you still going to San Franc.
for treatment? Think of you two often....wish you were here...
Take care
Aloha
Kath
3-11-2011
It has been a really rough week for Bill. Tuesday his
blood count and platelets were so low that the doctor said he might need a
transfusion. He gave him three days to see if it would come up. He
has been sleeping whenever he could get to sleep, and when he couldn't sleep,
he just sat in his chair or on the couch. Yesterday he started to feel a
bit better, and today, he feels almost normal. His blood work is much better,
not great, but no transfusion needed! Best of all, he can see people
besides me now. He is happy about being able to see Bryanna and
Bailey. I have had a crazy week so I haven't been able to write to
anyone, that's why this if the first you've heard from me in a while.
Things are looking up and he is half way through this treatment. After
that, the next treatment will start, and we are desperately hoping that the
side effects will be less. We'll see.
Love to you and thank you again for the support.
Billie
Love to you and thank you again for the support.
Billie
3-16-2011
Bill cracked up Dr. Kiener and his staff by
telling them that today was his one-ear anniversary. With all he has gone through, he still has
that fantastic sense of humor.
FB post
March 20, 2011
Due to I-80 being closed, it took almost nine hours to drive from Reno through South Lalke Tahoe and Placerville in a blinding snowstorm to San Francisco.
Bill can't miss his chemo weeks and I found out how much fun it is driving on chains for two and/2 hours, with hundreds of people, and only going 45 miles.
Anton Michael At least you didn't just find out what it sounds like when those chains hit, and eat away, the fenders for two and a half hours-- you know, becasuse Dad already knows what that sounds like..
Billie Kennedy Garrow That only happens with Chevettes. Snooty Prius drivers know better. You should have seen Dad, my hero, take the chains off, because we never found the removal guys between the promised 13 miles and 45 miles. He was soaked.
3-26-2011
I'm sorry we got cut off the other day when we
were talking. I tried to call you back a couple of times but couldn't get
through. We got home from San Francisco a couple of hours ago, after a 9+ hour
drive. It took us ten hours to get there on Sunday, because I 80 was closed and
we had to take 50. We hate driving in storms, but, in this case, we had
to do it. The chemo went well, and the doctor kept us for an extra night
because of the weather, so we wouldn't have to move to a hotel. Bill has
been asleep since we got here, and I had a lot of things to do on the computer
to get ready for work next week. We are firming up our travel plans for
May to Virginia and Houston. How far are you from Houston? We are
going to have a very short time there because we will have to be back in San
Francisco three weeks after the first Ipilimimab infusion which will be the
first week of May. We hope we will be able to see you, even if only for a
short time. I'm exhausted so I'm going to head off to bed.
Love,
Us
Love,
Us
4-5-2011
On March 28, two days
after we got home from San Francisco, Bill complained about a sore spot on his
back, which we attributed to lying in bed so much for the previous week.
On Tuesday, the pain was terrible, and there was a swollen area just about
where his liver would be. We changed his oncologist appointment from
Wednesday to Tuesday afternoon, and he spent the morning in bed. His
doctor was out of town, but he was going to see one of the other two doctors in
the office. He took pain pills, but they weren't doing anything for the
pain. He hadn't eaten much since arriving home, and he still wasn't
interested in food.
We went home to try to get a little sleep. At 11:30 PM, I called the doctor and said that he couldn't stand the pain. He was in bad shape, so
instead of waiting to see the doctor, I took him to the ER. They did
various tests, and put him on morphine to control the pain. The
"diagnosis" was that he had a lump, possibly a melanoma, but not for
sure. After seven hours we came home with a prescription for
morphine.
The morphine did help
with the pain, but he was nauseated and by 6 am Wednesday, he had begun to
vomit no matter what he took in. We waited until the doctor's office
opened and I called to tell them that he was in terrible shape. They said
to go right in. It took me 15 minutes to get him from the bed to the car
because he was too weak to walk. When we got there, one of the nurses met
us at the car and took him in a wheelchair. The doctor took one look at him and
said he was going to admit him to the hospital for dehydration and pain
control.
The next two days
were a blur of tests and meds. They couldn't do a biopsy because of the risk of
excessive bleeding and infection. The morphine did a good job in
controlling the pain, but he was hallucinating and weird. His platelets
were dangerously low and his white blood count was, too, so people had to wear
a mask to enter his room. On Friday, he had a platelet transfusion and a
blood transfusion. They put a PICC line in to make it easier to draw
blood and to administer all the anti-nausea medication and the morphine. They
were able to cut back on the amount of morphine gradually over the next few
days until he was taken off the IV and put on pills on Sunday.
He left the menus
they brought him blank because he didn't want the food they were offering, so
they brought him what they thought he should eat. The food they brought
him was awful, things like cheese blintzes, some kind of meat in gravy, chicken
thighs and gooey mashed potatoes and gravy. The smell of everything made him
sick. He was able to eat a few things, like cheerios and raisin bran and
I brought him food from home, extra rich ice cream and protein milkshakes and
Boost mostly.
The most important
thing to us is to get him to San Francisco to start his Ipilimimab
treatments. The doctor who was taking care of him decided that he needed
to see a radiation oncologist. Also, it was determined that he would not get
the fourth round of chemo/bio therapy at CPMC but would go right to the Ipilimimab.
She said that giving him radiation treatments would help to get him ready
for the next step. Everyone conferred with each other, including his
oncologist in San Francisco. So, we set up an appointment for a
radiation evaluation yesterday.
He was supposed to be
released from the hospital yesterday morning and he felt very good with very
little pain, but the doctor didn't make it into the hospital before his
appointment, so he was taken to that in a wheel chair by a security guard
yesterday at 11:00 am. They told him it would be a long wait, because
after the evaluation, they would do his first treatment. They said that
they could release him from there, and there should be no need to go back over
to the hospital after the treatment. I had already taken all his
belongings to the car.
After the evaluation,
we sat in the waiting room until 1:20, when the doctor came to talk to us and
take him in for his first treatment. I told her I had some questions, and
I asked exactly what the radiation was going to do at that point, because I
know radiation isn't effective on melanoma. The possibility of the
radiation injuring his spine and any organs in close proximity was quite high.
Also, we still don't have a firm diagnosis that it is melanoma. That is
still just the suspected diagnosis. I asked about having a biopsy now
because his immunity is not compromised and they would be able to cut into him
without so much risk of infection and excessive bleeding. She explained
that once the radiation starts, it would affect the outcome of the biopsy so
they wouldn't get a true result. She said that the only reason to have the
radiation was to try to shrink it so he can sit comfortably in the car to get
to his treatments. She agreed that it would not do anything to the tumor.
It would be for pain control. I said that the pain was being
controlled by drugs, he was lucid, and that he had been comfortably sitting in
a wheel chair for three hours, so why did he need to have the radiation at all.
Bill and I discussed it for about two minutes and we decided to not have
the radiation.
The doctor said she
would call the hospital to arrange for someone to walk over to pick him up. She
said they would have to take care of the release papers. Because he was
still a patient, I couldn't just take him over there. At 2:30 we were
still waiting, so I walked back to the nurse's station at the hospital to ask
if they would arrange to get him. I told them that he had been waiting
for over 30 minutes, after sitting in the wheelchair for three hours, and that
he was exhausted. The head nurse immediately went to get a security guard
and they went over to get him. When they brought him back, they said that
his doctor, who had arrived back from his vacation wouldn't release him until
he had seen him, and that he would be over after 5:00. We were beyond mad that
he hadn't taken the time to see Bill that morning to release him, but there was
nothing we could do. I told the nurse we were thinking of just walking
out, and she said if we did that, the insurance company might not pay the
bill. We went into the family cancer waiting room, which has a couch and
comfortable chairs and we read for two hours, but he got so tired, that we went
back to the room at 4:45 and he got into bed. Dr. Shields showed up about
5:40 and said he could go home. He didn't leave the hospital until 6:55,
because they had to get his papers ready, give him instructions and remove the
PICC line.
He felt good when we
got home, and he helped me put things away, went through the mail and sat up
with me to watch TV until 9:30. He got up at 6:40, feeling pretty good, and he
is sitting at the table paying bills. Today I am going to call the doctor
in San Francisco to find out what date we can start the IPI. Tony will be
in Sacramento next week, and he would like to go with us if we can arrange it
so it will fit in with his travel plans. We will pick him up in Rancho
Cordova and he will drive back to Sparks with us and change his return flight
from Sac to Reno.
Looking back on the
week - while almost all of the nurses we dealt with were caring and nice, the
level of care at that hospital doesn't come close to CPMC. We kept track
of how long it took for someone to answer the call button. Now, remember, this
is the oncology ward, where people are getting heavy duty drugs. Some of
the risks are falling, bleeding, choking on vomit, and cardiac problems.
People are on monitors for some reason, and the alarm bells ring for some
reason throughout the day and night - whether it be because the medication is
getting low, the IV line is kinked, or the oxygen level in the blood is too
low. When the machine beeped, I would reset it so we didn't have to
listen to the sound, and I would push the call button to let them know something
was needed. Several times I reset the machine too many times to count and
the response was usually over 20 minutes. Three times that I know about, it
took over one hour for anyone to come into the room or to call over the speaker
to ask what we needed. The first two days, Bill wasn't even able to push
the call button, so if I hadn't been there, I don't know how long it would have
taken for someone to notice that his morphine was almost gone. When the
medication gets low, they have to order more from the pharmacy, so it isn't a
matter of just taking off the old one and popping on a new one. On
Friday, after Bill was doing better, I went home a little early, about 5, so I
could clean the house and get some rest. He called me at 9 pm, very
agitated, to tell me that he had waited one hour and 20 minutes for someone to
answer the call. He didn't know how to reset the computer so it beeped
constantly for that entire time. He finally got up and went to the nurse's
station to let them know that he couldn't stand the beeping any longer. I told
him that I would complain in the morning, but I was too tired to drive back to
the hospital then.
The next day,
Saturday, he said that he had talked to one of the charge nurses about being
ignored and that he was upset. She was very kind, saying she understood and
that she would speak to the staff about it. When Kathy was visiting, I
told her what had happened the night before, and she immediately contacted a
friend who is a head nurse in another department to let her know we were
unhappy. Her friend actually came to visit us that afternoon, and
apologized for the problem. She said she was going to report it to the
proper department.
Another thing that
happened was, I had brought Bill a Boost on Sunday. I asked the nurse for
a glass of ice for him. She brought him a Styrofoam cup with ice, and I
poured the drink for him. While this was going on, she was getting ready
to take his blood pressure and oxygen level. After having a sip of the
drink, he said that there was something on the rim of the cup, that looked like
lipstick. From my chair, and in that lighting, I could see what he was
talking about, but it looked like it was just some of the Boost that had gotten
on the outside of the cup. After the nurse left the room, I looked at it
more closely, and found that it really was lipstick on the inside and the
outside of the cup. I took the cup to the nurse's station and told them
that the damage was already done, because he had sipped from the cup, but I
wanted them to know about it. The nurse took me into the kitchen, which
is not accessible by the public and showed me the cup dispenser, which was
empty, and the open plastic bag full of cups sitting on the counter. She
said she had no idea how that could have happened. We had no idea either,
but it did happen and it shouldn't have.
My sister and nieces
drove all day Sunday to visit us. They brought homemade sauce and
meatroll to take to Kathy and Rommie's for dinner. We had a lovely
evening but we missed having Bill with us. They were going to spend
the day with us, yesterday, after Bill was released from the hospital, but it
was far too late last night for them to come over. So, I missed most of
their visit. I was able to have breakfast with they yesterday and they
will stop by for a visit this morning before they drive home.
So, that's where we
are right now. Keep those prayers coming, please!
4-5-2011
Dear Garrows....thanks for the update...you must be
EXHAUSTED..know how stressful just being in the hospital running from ICU to
work to home, etc. some days, I said "I just can't do this" and
then the "yes, you can...you have to" kicked in.
We are praying for both of you ...wish we could take the
pain away for you...
Paul is doing much better....we both look like old people
walking but Paul has given up the wheelchair ,cane and walker. I hurt
both knees so I have used the cane...getting old is not that much fun!
Take care and we'll pray hard
Love ya
Paul and Kath
5-31-2011
 |
| The Whole Group |
We
had a wonderful trip to Texas. We got together with all
the kids and grands and went to parks, the zoo and the Johnson Space
Center. In between there was plenty
of time for just sitting around on the patio and
talking/playing/reading/relaxing. The drive was long and we were glad
we
had satellite radio so we could listen to radio classics like The
Shadow,
Escape and Suspense while we were driving over terrain that never seemed
to
change. On the way home, instead of being storm chasers, we were storm
escapees, because we were outrunning tornado weather from south of Ft.
Worth
all the way past Amarillo. The winds were incredible. We even had a
chance to see our good friends in Holland, Texas on the way to Houston
and in
Las Vegas on the way home. We're heading over to San Francisco for
Bill's
second Ipi infusion tomorrow (as if we need a road trip!) So far, the
only side effect he has had from the first one is itchy skin, so we are
grateful for that. Thank you all for your notes, cards, emails, phone
calls and texts. It helps so much to know you are with us in spirit.
Love,
Bill and Billie
Love,
Bill and Billie
6-6-2011
Bill's second round of Ipilimimab went
well. We decided that rather than spend the night in a hotel, we would do
the trip all in one day, so we left here at 4:30 for a 9:30 appointment.
Bill was able to drive the whole way, which made it so much easier for
me. We made it there by 9:00 and were on our way at 12:30. The
drive back was good, and we thought about stopping for lunch in Dixon, but the
clouds ahead were worrisome, so I kept on going. When we got into the
foothills, it was raining, and shortly after that it started to snow. It
wasn't until about 15 miles from Truckee that the stupid chain control started
and we had to chain up. Fortunately we had tossed the chains into the car
before leaving that morning. The first chain jockey started to put the
chains on, with a lot of grumbling about the cable chains. After about 10
minutes, he came over to tell me that the chains were not going to fit, and he
could sell us some that would. Those were the same chains that we used
for our trek over to San Francisco six weeks ago so I protested. He said,
"You are costing me money, here. Go ahead and see if you can find
someone else who can do it." I pulled ahead to the next guy, who had
them on in no time. I told him that the first guy had tried to sell us
chains that would fit, and he said it is unfortunate that there are no controls
over who installs the chains. We were very grateful that we found the
right guy the second time.
He has one more time to go on this round so we will be back there on June 23. I certainly hope the weather will be more cooperative by then. After that, we will have to go over once every three months
.
We have to work today, so I'd better get started.
Kisses and hugs to you and John,
Billie
6-17-2011
Bill continues to
be relatively side-effect free. He has awful itching all over his back,
and he's having trouble sleeping, but those are the worst things. We're
going over to SF next Thursday for chemo, and we're going to take the girls
with us. I asked them what they would like to do there, and they said
they really don't want to take the boat to Alcatraz, and they went to the
Exploratorium last year, but the thing they really would like is to go to the
Monterey Bay Aquarium, so after his treatment, we're going to drive down to
Monterey. I bid for a 4-star room on Priceline, and got the Hyatt Regency
Monterey Hotel and Spa, saving almost $100.00 for the night. We'll have
lunch on the way there, and we'll get there early enough to play at the ocean
(looking for tide pools, and swim in the gorgeous pool at the hotel.)
We'll only stay there one night, go to the aquarium the next day, and then,
depending on how early we are ready to leave, we'll drive toward home, looking
for a hotel with another great pool. That is their main criteria for a
hotel, being able to swim. We might not get very far, but we don't want
to spend two days in the resort because it's "more interesting to go to
different places." We have to be back at work on Monday
morning, so we will only be gone for four days. We've had some really heavy
work since we got back from Texas but it keeps us busy, and we're glad to be
able to get out there and do it together.
We're going to go to Bry's 6th grade graduation this morning. She is almost a teen-ager! I have to work this afternoon at Sears. Bill gets the day off, except for physical therapy, so he will probably work on eBay and do some serious reading. As always, thank you for the notes, emails, postings, texts, and calls.
Love,
Bill and Billie
We're going to go to Bry's 6th grade graduation this morning. She is almost a teen-ager! I have to work this afternoon at Sears. Bill gets the day off, except for physical therapy, so he will probably work on eBay and do some serious reading. As always, thank you for the notes, emails, postings, texts, and calls.
Love,
Bill and Billie
6-21-2011
This
will be just a quick note. He got a headache on Wednesday, and it became
unbearable so he was admitted to the hospital for pain control late last
night. It is still bad and he is still there. They think it is a
complication of the chemo. He can't function with that much pain.
They are running every test possible to isolate the cause and hopefully find
out what they can do to make him better. They did a scan of his pituitary gland
because that one is often affected by the Ipilimumab. Yes, the Ipi is one
of those new drugs you read about. They are supposed to be very effective
at killing melanoma cells, but unfortunately, they also kill the good cells,
especially in the intestines, glands, and organs. We thought he was getting
along well, until this happened. Keep those prayers coming.
The girls were so great about cancelling the trip to Monterey. Bry said, "Well, we'll just have to wait until they figure out what to do about Grampi's headache, and we can go after that. I'm off all summer, and Bailey has a month. If we can't go before that, it will be okay for her to miss a couple of days of school for the trip." It's okay for a lowly sixth grader to miss a couple of days, but a big, bad seventh grader, who has the whole summer off, won't have to. We WILL still go, but we don't know when right now.
I'm really glad your family is all okay.
I am going to go veg in front of the TV and then try to get some sleep, so I can be at the hospital at 6.
Love,
Billie
The girls were so great about cancelling the trip to Monterey. Bry said, "Well, we'll just have to wait until they figure out what to do about Grampi's headache, and we can go after that. I'm off all summer, and Bailey has a month. If we can't go before that, it will be okay for her to miss a couple of days of school for the trip." It's okay for a lowly sixth grader to miss a couple of days, but a big, bad seventh grader, who has the whole summer off, won't have to. We WILL still go, but we don't know when right now.
I'm really glad your family is all okay.
I am going to go veg in front of the TV and then try to get some sleep, so I can be at the hospital at 6.
Love,
Billie
7-10-2011
The past two weeks
have been difficult for us. The radiation went well, although he has been
getting headaches often. Dr. Minor said to stop taking the steroids on
Saturday, July 2, telling Bill that he would be in a "bit of a funk"
for a few days. Well, he was in a walking coma from Monday until
Thursday, when we had to go to San Francisco to see Dr. Minor. The drive
over was terrible, with him being very depressed and me having to stop to calm
him down. At one point, still somewhere in the Sierra, I phoned Monique
for help in dealing with him, but she didn't get the message for a couple of
hours. I felt so alone, and I wanted someone to talk to. We finally
made it to San Francisco but it took almost six hours due to tall the stops.
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| Our Room At the Inn |
The San Francisco
Inn was lovely although just a bit shabby, but they are currently doing
painting and other renovations, so it seems that they are aware that it needs
help. The owner, Marty, met us as I parked in a spot that was next to a
"No Parking" sign in a construction zone, but it was right in front
of the B & B. I told him that I'd like to unload Bill and the
suitcase, and then I would park somewhere else. He helped Bill get out,
and helped us get up the stairs and inside. I realized that the building
was three stories tall, something I should have known, but hadn't. I told
him that I had made a mistake because Bill wouldn't be able to walk up to the
room I had reserved. He graciously made some changes, and let us have the
master bedroom, right next to the parlor, downstairs, for the same rate as the
smaller room upstairs. We paid $125.00 for the night and the larger room
was supposed to be $215.00.
So, Bill went in to
take a nap, while I checked in. After that, I told Marty that I was going
to go move the car. He told me that he was going to move his car so I
could park just across the street. But, when we went outside, he told me to
wait a minute and he walked across the street to speak to the construction
foreman. He came back and said that I could stay in my spot. I was
just overwhelmed by his kindness. Later, while I was reading in the
parlor, Marty joined me for tea, and we talked about what is going on with
Bill's condition. I also talked to Monique she was comforting, as usual.
I woke Bill up for
his 3:15 appointment and Dr. Minor gave us encouraging news. Even if his
pituitary is very damaged, there are drugs he will be able to take that will
make up for the loss of function. He also said that the chemo will
continue (Thank God!) but not right away, because Bill has to feel a lot better
before he gets any more. He wanted to admit Bill to the hospital,
there, for a few days, but we persuaded him to try to deal with his symptoms
without resorting to that. He ordered a brain scan and said he was going
to prescribe some drugs. But, he only gave us a pill, which he broke in
half and had Bill take that, telling me to hold on to the other half. The
brain scan couldn't be scheduled until 6:45 the next evening, so we went back
to the inn and arranged to stay another night. Marty told us we could
have the same room at the same rate. Bill napped for an hour and I
ordered us a pizza and a salad. We ate in the parlor with our books, and
then we went to bed at 8:00. I watched TV for a while and turned it off
just after 9. He woke up only once and had to change his jammies because
they were soaked. I put some towels on the bed and changed his
pillowcase.
In the morning, he
felt a little bit more aware. We had a lovely breakfast in the parlor, sitting
at a small table so we didn't have to visit with anyone. He didn't feel
like being sociable. We had to move the car by 9 for street cleaning, so
we left and went for a drive. He checked for voice mails and found one
from Linda, the receptionist at Dr. Minor's office. She had called
to let us know there had been a cancellation and that we should be at the
hospital at 6:45 AM! I called her immediately and told her that my phone
had died the night before so I had just gotten the message. She did some
magic, and told us to be there at 12:15.PM. I asked if we would be able
to go home after the scan and she said she would ask the doctor and call us
back. She called at about 10 and said that we could go home, and that Dr.
Minor wanted to see us before we went for the scan. So we drove over to
his office right away. He gave us three prescriptions, one for a
different steroid that would start to make Bill feel better right away. I
walked Bill over to the hospital for the scan and went downstairs to fill the
prescriptions. After the scan, we went back to the inn and they let us
check out without paying for the second night, even though it was two hours
past check-out time. We will definitely be returning to that B & B. We've never been treated so well by perfect strangers.
Unfortunately, Bill doesn't remember very much of our stay there.
We made it home by
a little after 7, even though the traffic was really bad through Vacaville and
Sacramento. It was wonderful to sleep in our own bed, and we both slept
from 9 to 7, the first time in a really long time that has happened. He
felt almost normal on Saturday, but not so great today. I guess it will
take some time for him to be totally better, but he is still very improved over
the way he was last week.
It's time for an update on Bill. He is having almost constant headaches, but he is trying to be as normal as possible. Whoda thunk a little thing like a pituitary gland could be such a b*&^h! He has left a message for his SF oncologist to see if some more radiation might help. We don't really know if the headaches are because the pit. is still enlarged, or because it is damaged. Chemo is supposed to resume in September. I'll update when I know more.
9-1-2011
We had such a wonderful time with Anais and
Tony. Bill only had one headache after we landed in DC, and that was a
mild one. He did great with all the walking and other activities that
Tony and Anais planned. We went to a lot of the tourist spots in DC on
Saturday, the 20th and we left for Niagara Falls on Sunday.
The earthquake in Virginia caused some minor
damage to the kids things, but nothing major. We were very lucky that we
had already had our tour of the Washington Monument and the Capitol, because
they were closed for the rest of our stay due to earthquake damage.
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| Family Time |
Our short trip to the falls was fantastic.
Tony had arranged for a suite on the 47th floor at the Hilton on the Canadian
side so we had the best views of the falls and surrounding area that could be
imagined. Bill’s dad still lives alone
and seems to be doing well. We were
there for his 91st birthday. We all got together with Walter, Sharon
and Ryan for dinner and had a great time. We were bumped on our return trip
to Reno because the flights from the east coast were disrupted due to the
hurricane, so we got $800.00 in flight vouchers, so we are going to be able to
make a return visit within the next year.
We found that there was a lot of work waiting for me when we got back, so we have been on the go since Tuesday morning. Bill continues to feel good. He had an MRI and a CAT scan this morning, and we will be going to San Francisco to see his oncologist next week, and we hope he will be able to start the chemo again on that visit.
I'm starting to get tired, so I'm going to head off to bed.
Love,
Billie
We found that there was a lot of work waiting for me when we got back, so we have been on the go since Tuesday morning. Bill continues to feel good. He had an MRI and a CAT scan this morning, and we will be going to San Francisco to see his oncologist next week, and we hope he will be able to start the chemo again on that visit.
I'm starting to get tired, so I'm going to head off to bed.
Love,
Billie
9-9-2011
Annie,
We saw Bill's oncologist today and got the good news that
he thinks the melanoma is gone. This is what we have been working toward
for the last couple of years. He still has to have his PET scans, MRIs
and CAT scans regularly, and he will still have to go through the chemo every
three months for the next three years, starting October 7, and he will
have to be on hormones for the rest of his life. We are filled with
optimism which hasn't been seen around here for quite a while. We thank
you for your prayers and good wishes - please keep them coming! Today has
been a long one, what with leaving here for San Francisco at 4 am and getting
home about one hour ago, so I'm going to get some dinner together and then
chilax for the rest of the night.
Love,
Bill and Billie
Love,
Bill and Billie
Woo-hoo! Chain controls were lifted just before we got to the inspection station. Officer said to hurry 'cause more snow was on the way and it would change back to chains mandatory soon. There were armed police at each station looking for someone. Glad it wasn't us. Toes in the sand in San Francisco if we can't be in Maui.
FB post
Oct, 7, 2011
Dad is finally here with us. Getting ready for homemade soup.
Oct, 7, 2011
Dad is finally here with us. Getting ready for homemade soup.
I'm most thankful that Bill continues to be cancer free. We now have Bill's dad out here near us, so that is my second thing to be most thankful for. After that is our wonderful family and loyal friends scattered around the country and the fact that we have a comfortable place to live, and enough to eat. My good wishes go out to all of you.
12-17-2011
Hi
there,
I don't have a personal email address for you anymore. Do you have one? We haven't talked for quite a while. Is everything okay with the kids, and you guys?
We are going to San Francisco on Thursday for Bill's treatment. It looks like the weather will be cooperating this time, so we won't have to worry about chains.
Bill's dad has continued to improve over the past month, so much that he moved out of the Lodge (locked doors between him and the world) into the assisted living section. The savings is only a little over $500.00 per month, because he still needs his medication monitored, and to be reminded to go to meals, but he doesn't have to sit in the dining room with the people who either sleep, drool, pr babble continuously while sitting at the table. That unit has only 12 or so people who can actually converse, and even most of them are much worse than h-was, even in the beginning, when we first brought him here. They are mostly happy, good-natured people, but don't remember what they said three minutes ago. Dad has regained a lot of his short term memory, but he still doesn't remember living in New York for the past 13 years. He moved on Wednesday, and is enjoying his apartment, which has a bedroom and a living room/kitchen, along with a bathroom with it's own shower. Another thing that drove him crazy in the Lodge was that one of the women goes into any room she wants to go into, and takes whatever she likes. He was continually telling her that he didn't want her in there, and she would get mad and yell, "you're mean!" He thinks they ought to put her in a "home." I told him that is a home, and he said, "Well, a home where she won't be a pest."
Bill is laid up with chills, a major headache, and fatigue. We don't know what has gotten to him because it has been almost three months since his last treatment, and this is the first time in four months that he has had these kinds of symptoms. He has been sleeping for two days, and there was a little bit of improvement, so I hope he will be okay tomorrow. He was vomiting all night Thursday night and most of the day, yesterday, so at least that is gone.
Let us know what's happening in your lives. We miss you.
Love,
Billie
I don't have a personal email address for you anymore. Do you have one? We haven't talked for quite a while. Is everything okay with the kids, and you guys?
We are going to San Francisco on Thursday for Bill's treatment. It looks like the weather will be cooperating this time, so we won't have to worry about chains.
Bill's dad has continued to improve over the past month, so much that he moved out of the Lodge (locked doors between him and the world) into the assisted living section. The savings is only a little over $500.00 per month, because he still needs his medication monitored, and to be reminded to go to meals, but he doesn't have to sit in the dining room with the people who either sleep, drool, pr babble continuously while sitting at the table. That unit has only 12 or so people who can actually converse, and even most of them are much worse than h-was, even in the beginning, when we first brought him here. They are mostly happy, good-natured people, but don't remember what they said three minutes ago. Dad has regained a lot of his short term memory, but he still doesn't remember living in New York for the past 13 years. He moved on Wednesday, and is enjoying his apartment, which has a bedroom and a living room/kitchen, along with a bathroom with it's own shower. Another thing that drove him crazy in the Lodge was that one of the women goes into any room she wants to go into, and takes whatever she likes. He was continually telling her that he didn't want her in there, and she would get mad and yell, "you're mean!" He thinks they ought to put her in a "home." I told him that is a home, and he said, "Well, a home where she won't be a pest."
Bill is laid up with chills, a major headache, and fatigue. We don't know what has gotten to him because it has been almost three months since his last treatment, and this is the first time in four months that he has had these kinds of symptoms. He has been sleeping for two days, and there was a little bit of improvement, so I hope he will be okay tomorrow. He was vomiting all night Thursday night and most of the day, yesterday, so at least that is gone.
Let us know what's happening in your lives. We miss you.
Love,
Billie
Dec 20, 2011
Our trip went well – lightest traffic we’ve ever had going
into the city. Dr. Minor said the
headache could have been a migraine, flu, or effects of cutting back on the
hydrocortisone and testosterone. So,
Bill is back up to full dose and feeling great.
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