January 2012
It’s 2012, and everything is going well. Bill still has some side effects – tingling
and cold feet, occasional lumps and itches, and fatigue. Even with those he is feeling so much better
than he had been, He is able to go to
work with me and he does everything around the house that he used to do. We’re even planning a trip to Maui in June
with Bryanna and Bailey. Our next trip
to San Francisco is planned for Feb 22, with his treatment about a month after
that. We’ve been stressed by the situation with Bill’s dad, but
things are going pretty smoothly. We’ve
been thinking of moving him to Bonaventure because the cost would be $1,500.00
per month less than Cascades.
Feb 18
We’ll
be heading over to San Francisco on Wednesday, Feb 22
for a visit, then, probably Ipi a couple of weeks later. He had scans
and blood work done in the past
week, so he is all set. I told Joline
that his two ear anniversary is coming up but I gave her the wrong
date. It will be March 10. Today, he got the most adorable letter from
Joline and Bill.
March 28
Dr. Minor visit - Yervoy treatment.
Dr. Minor visit - Yervoy treatment.
Bill’s Shearf
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| A Work In Progress |
I missed my calling.
Just call me Dr. Billie. The
patient is feeling good. He just has a
crook in his neck. His drain will come
out tomorrow along with, at least some of the 45 staples that are holding his
brains in.
April 29
He has recovered nicely from the first of three surgeries,
and is looking forward to the next one.
I will try to give more details soon.
 |
| Silly Guy |
 |
| May 18 - Day After Surgery |
On
May 19, We got a nice letter from Glenn, a patient of Dr. Minor's. He
is also going through melanoma. I'm going to ask him if I can include
his correspondence in this blog.
Hi Bill,
Dana Monroe, in Dr. Minor's office, kindly referred me to you as one who might provide some insight into living with melanoma. I would very much appreciate your thoughts, especially those related to how you manage to stay positive when events conspire to make you think and feel the worst.
Here's my situation: I had skin melanoma 10 years ago, which we thought was
eradicated. Unfortunately, some melanoma cells got into the bloodstream and, in
due course, metastasized to a few of my bones. Some found their way to the T12
vertebra, where they slowly weakened the bone and caused a compression fracture.
This fracture was discovered after I changed the tire on my wife's car and
sprained my back in the process. The MRI taken later clearly showed the fracture
and a tumor nestled quite comfortably in the vertebra. The PET scan a bit later
showed the other locations at the clavicle, hip and spine.
Two surgeries, five weeks in the hospital, including two in rehab, radiation
treatments of the T12 area, then three Yervoy treatments brings us up to date.
I'm due for my fourth Yervoy treatment next week, along with a third treatment
of Zometa.
Due to spinal bruising that occurred during surgery, my left leg was rendered
pretty much useless. Much of the therapy that I've undergone at the hospital and
at home has been focused on returning this leg to full function. But the process
has been slow and I've been mostly housebound whilst the leg recovers. That has
made dealing with the melanoma that much more difficult because I can't
independently get out and do things: ride my bike, take a hike, work on the
house, go shopping…any number of relatively mundane activities to keep my mind
and body occupied.
But I've heard and read good things about Yervoy so I have everything to be
hopeful about. The doctors I've had for my back and the melanoma have been
remarkable; I've felt extremely fortunate to be their patient. But as my mind
churns through the possibilities while I play with the cats, it's hard to avoid
the depression that comes and the negative thoughts that rudely push aside any
positive considerations.
So I come to you for a little help in dealing with this. I have few
expectations, only some hope that discoveries you've made from your own
difficult experiences may give me some guidance in how I can better deal with
this disease.
Thank you, Bill, for any thoughts you can pass along.
By the way, I've copied my wife, Michele, because I very much want her to read
what you have to say. She's been my caregiver through this entire struggle and I
would not have progressed nearly as far as I have without her.
Again, thank you Bill for any time you can spare.
Glenn
Dana Monroe, in Dr. Minor's office, kindly referred me to you as one who might provide some insight into living with melanoma. I would very much appreciate your thoughts, especially those related to how you manage to stay positive when events conspire to make you think and feel the worst.
Here's my situation: I had skin melanoma 10 years ago, which we thought was
eradicated. Unfortunately, some melanoma cells got into the bloodstream and, in
due course, metastasized to a few of my bones. Some found their way to the T12
vertebra, where they slowly weakened the bone and caused a compression fracture.
This fracture was discovered after I changed the tire on my wife's car and
sprained my back in the process. The MRI taken later clearly showed the fracture
and a tumor nestled quite comfortably in the vertebra. The PET scan a bit later
showed the other locations at the clavicle, hip and spine.
Two surgeries, five weeks in the hospital, including two in rehab, radiation
treatments of the T12 area, then three Yervoy treatments brings us up to date.
I'm due for my fourth Yervoy treatment next week, along with a third treatment
of Zometa.
Due to spinal bruising that occurred during surgery, my left leg was rendered
pretty much useless. Much of the therapy that I've undergone at the hospital and
at home has been focused on returning this leg to full function. But the process
has been slow and I've been mostly housebound whilst the leg recovers. That has
made dealing with the melanoma that much more difficult because I can't
independently get out and do things: ride my bike, take a hike, work on the
house, go shopping…any number of relatively mundane activities to keep my mind
and body occupied.
But I've heard and read good things about Yervoy so I have everything to be
hopeful about. The doctors I've had for my back and the melanoma have been
remarkable; I've felt extremely fortunate to be their patient. But as my mind
churns through the possibilities while I play with the cats, it's hard to avoid
the depression that comes and the negative thoughts that rudely push aside any
positive considerations.
So I come to you for a little help in dealing with this. I have few
expectations, only some hope that discoveries you've made from your own
difficult experiences may give me some guidance in how I can better deal with
this disease.
Thank you, Bill, for any thoughts you can pass along.
By the way, I've copied my wife, Michele, because I very much want her to read
what you have to say. She's been my caregiver through this entire struggle and I
would not have progressed nearly as far as I have without her.
Again, thank you Bill for any time you can spare.
Glenn
Bill's answer to Glenn on May 20
Hello, Glenn!
My melanoma began as a spot on my left ear that I ignored for at least three years. My son-in-law finally said I should get it looked at, so I did. My emotions and thoughts have run the gamut, but I am still here fighting. Dr. Minor came walking into the exam room last fall, and nonchalantly stated, "Well, it looks like the cancer is gone." My wife, Billie, and I just about fell off our chairs. The maintenance is going well, with few side effects. Mostly, I tire easily, and have itchy skin. My pituitary is very damaged, so I'll be on testosterone and hydro-cortisone for the rest of my life, but it appears I will have a life, so I can take the problems that have popped up. I just had re-constructive surgery to build a shelf over my non-ear, so my glasses will stay on.
Billie has kept a journal since this whole thing started. It is very personal, and we haven't shared it with anyone except very close friends and family, but I am attaching it, because, I hope it might help you with your fight.
We are driving over to San Francisco on Wednesday for an exam and June 6 will be my next treatment. We will be spending the night on the 5th at Inn San Francisco on South Van Ness, a wonderful Bed and Breakfast we discovered when I was on the Interlueken. They are wonderful to us, having first met me when I didn't think I was going to be around very long. You didn't say where you live, but I would like to meet you.
Above all, don't give up!!
Regards, Bill,
May 23, 2012
We
lost Bill's dad on May 10. He was in the hospital for six days with a
mild case of pneumonia, that got progressively worse. Bill is taking it
very hard. There is so much paperwork involved, We went to the VA last
week, to see about the benefits for Aid and Attendance, a process we
began in November. We were told that the application was never filed and
that the claim dies with the patient. Bill was so upset, I was afraid
he was going to have a stroke. All we were waiting for was the visit to
the VA doctor, which happened in March, so we don't know why we weren't
notified that the papers could be filed. We are now filing the papers
so they can be denied and then we can file an appeal.
We are planning a small memorial for Dad at Our Mother of Sorrows in Reno on August 2.
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| Our Getaway |
We
made our trek to San Francisco to see Dr. Minor, expecting the same
great results we've been getting since last fall. Bill has another spot
that has popped up on
his adrenal gland. The doctor said it is probably not too significant,
but we have to be more aggressive with the chemo for the next three
months. We are praying that it won't affect him too much, so he will be
able to enjoy the trip to Maui. After leaving the doctor's office, we
drove to the Inn, to change our reservations for June 6, which was
supposed to be chemo day. Instead we will be going over on May 30 for
the first of four treatments. We made reservations for all four trips.
The Inn has become our home away from home. Lisa was so kind, and she
told us to get some drinks and fruit for our trip home. The drive home
was good, and Bill drove from Vacaville all the way home, which was a
good thing, because I was having trouble staying awake.
Other than that, there isn't anything new here. Oh yes, I've quit two of my jobs, because they were causing me so much stress. Bill's aunt talked to me like a mom, and said that I need to take care of me if I'm going to take care of Bill and Dad. Two days after I quit, is when we admitted Dad into the hospital, and I thought it was kind of ironic. But, now with this new treatment looming, which means a trip to San Francisco every three weeks for treatments, along with MRIs and PET scans more often, it was a good thing I did it. I'm grateful to Aunt Vera for being so sense-able.
Other than that, there isn't anything new here. Oh yes, I've quit two of my jobs, because they were causing me so much stress. Bill's aunt talked to me like a mom, and said that I need to take care of me if I'm going to take care of Bill and Dad. Two days after I quit, is when we admitted Dad into the hospital, and I thought it was kind of ironic. But, now with this new treatment looming, which means a trip to San Francisco every three weeks for treatments, along with MRIs and PET scans more often, it was a good thing I did it. I'm grateful to Aunt Vera for being so sense-able.
On May 23, we received this back from Glenn.
My
apologies for not responding sooner to your email. I have to admit that
I struggled a bit with a response that matched the gesture of your
sending the journal. But I've given up. The journal is an amazing,
emotional log of your experiences with melanoma, and it has given me a
new perspective on my struggle with the disease. My bad days are perhaps
not quite as bad as I would have myself believe, and I have more good
days, and made more progress, than I might admit.
Thank you very much for the trust you've shown in sending the journal. And yes, we would like to meet you and Billie, also; to meet the folks who have made such a remarkable journey with this disease.
Michele and I live in El Cerrito, which is just across the bay from SF. It takes relatively little time for us to drive over. Mornings and afternoons are usually a bit easier for me physically, but early evening can work, depending on your situation. Please let us know what works best for you and hopefully we can work around our respective appointments.
We very much look forward to meeting you and Billie.
Glenn & Michele
Thank you very much for the trust you've shown in sending the journal. And yes, we would like to meet you and Billie, also; to meet the folks who have made such a remarkable journey with this disease.
Michele and I live in El Cerrito, which is just across the bay from SF. It takes relatively little time for us to drive over. Mornings and afternoons are usually a bit easier for me physically, but early evening can work, depending on your situation. Please let us know what works best for you and hopefully we can work around our respective appointments.
We very much look forward to meeting you and Billie.
Glenn & Michele
I am going to call them today, and let them know when we will be in San Francisco next. I hope we can get together for dinner.
May 24, 2012
Hi
Bill and Billie,
Talk about good news, bad news. You two are certainly
being tested. I hope that you are still able to go to Maui for your
trip, as rest and relaxation are as important a treatment as anything.
This cancer is certainly an unrelenting disease, and for you to have to
keep up with these treatments is difficult. I have lost both of my
parents and when my Mom died it took a year to settle everything. So I
also extend my sympathy to you in the lost of your Dad. It is
devastating, as they are always there for you. I am sending you both a
big hug and wishes of sympathy and wishes of courage to get through all
of this. Thank you for the updates-take care.
Love Pat
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| May 24 |
May 24
From Glenn -
From Glenn -
I'm
very sorry to hear about your father, Bill. And then the spot on the
adrenal gland. Either situation would be quite enough to deal with, so I
wish you well in working through this.
My father died in a similar fashion. After spending time in a home for those suffering from Alzheimer's, he got pneumonia and died very shortly after. Unfortunately, I wasn't close to my father and I envy you that. That connection with my father is something I'll always miss in my life.
We might just meet earlier than we thought. My 4th Yervoy treatment is on Wednesday the 30th at 9:30. Are you coming in anywhere near that time? We have an appointment with Dr. Kashani at 1:30. But that puts us a little at odds for dinner later. I would like to, but my body would complain bitterly. If time permits, maybe we could get some lunch. If not, we might at least meet, then get together later when you return for your next treatment.
Hope we can work something out; I would like to share that Italian dinner.
Glenn
Oh, by the way, you may certainly use my emails in the journal. I'd be more than happy to be a part of your adventure.
My father died in a similar fashion. After spending time in a home for those suffering from Alzheimer's, he got pneumonia and died very shortly after. Unfortunately, I wasn't close to my father and I envy you that. That connection with my father is something I'll always miss in my life.
We might just meet earlier than we thought. My 4th Yervoy treatment is on Wednesday the 30th at 9:30. Are you coming in anywhere near that time? We have an appointment with Dr. Kashani at 1:30. But that puts us a little at odds for dinner later. I would like to, but my body would complain bitterly. If time permits, maybe we could get some lunch. If not, we might at least meet, then get together later when you return for your next treatment.
Hope we can work something out; I would like to share that Italian dinner.
Glenn
Oh, by the way, you may certainly use my emails in the journal. I'd be more than happy to be a part of your adventure.
May 27
Okay,
I was chastised this morning. I gave Aunt Vera the credit for making
me see that I needed to make some changes, which led to me resigning
from some of my jobs. I actually have to give credit to my sister,
Joline, my good friend, Gee, and Bill because they have been saying, for
a long time, that I should cut back in order to maintain my sanity. I
don't know why Aunt Vera is the one who finally got through to me, but
I'm grateful to all of them for trying to help me. It has been a relief
to be able to go through the day without spending three hours on the
computer organizing, submitting reports, and going through the training
sessions and conference calls that were part of the job. We may have to
tell the hospital and doctors that we will pay them all $10.00 per
month for the rest of our lives, but we will have a lot less
work-related stress going on around here.
Two
days after submitting my resignation, we sent back 35 pounds of phones,
tablets, and assorted Motorola equipment. What a great feeling to be
rid of all that stuff. And, we are slowly making space in our garage,
by weeding through things we have been accumulating, "just in case we
ever get a bigger house." We are trying to go by the philosophy of "if
we haven't used it in six years, we don't need it." Of course, some of
the things can be sold on eBay, and Bill wants to keep up with that,
which will give us a way to make money while getting rid of things. We
used to make a lot of money selling on eBay, but when the market
changed, people weren't buying frivolous things like they used to do.
We'll see how it goes.
Dear Glenn,
Well,
the date is great, because my Yervoy treatment is at 1:00 next
Wednesday. We always leave here early to account for traffic delays, so
if we could get there by 11:00 or so, we could meet for lunch at one of
the little restaurants on Filmore Street. Billie's number is
775-722-2026, if you want to call to let us know if that would work.
About dinner that night - do you have a bad reaction to the Yervoy?
Just wondering, because I haven't had any immediate reactions. I just
itch all the time and I'm always tired (not to mention the occasional
diarrhea.)
Until later.
Bill
Until later.
Bill
Hi Bill,
Meeting at 11 or so might work the best, if you can swing it. The Yervoy treatment takes an hour or so, as I recall, so the timing might be about right.
I don't have immediate reactions to Yervoy other that what you mention. The problem is my back and left leg (please see my original email). Recovery from back surgery has been far more difficult for me than the Yervoy treatments. After a day in the city and the two doctor appointments, my leg and back pain will have ramped up to the point where dinner would not be an enjoyable event for me.
If we can do the dinner in three weeks, I can be better prepared for it by resting earlier in the day (and I will have an extra three weeks of recovery behind me). I would certainly enjoy it much more, as well.
Hope this all makes sense. I'm sorry we can't make dinner work this time.
Glenn
Meeting at 11 or so might work the best, if you can swing it. The Yervoy treatment takes an hour or so, as I recall, so the timing might be about right.
I don't have immediate reactions to Yervoy other that what you mention. The problem is my back and left leg (please see my original email). Recovery from back surgery has been far more difficult for me than the Yervoy treatments. After a day in the city and the two doctor appointments, my leg and back pain will have ramped up to the point where dinner would not be an enjoyable event for me.
If we can do the dinner in three weeks, I can be better prepared for it by resting earlier in the day (and I will have an extra three weeks of recovery behind me). I would certainly enjoy it much more, as well.
Hope this all makes sense. I'm sorry we can't make dinner work this time.
Glenn
Dear Glenn and Michelle,
We came up with a plan for next week. We will be leaving San Francisco around 9:00 or 10:00am on the 31st. We will be spending the night in Sacramento with some friends. They won't be available until after 3:00 pm but we don't have to be there that early. So, that gives us six hours or more to get there, and, even with traffic, it has never taken us more than three hours. So, could we meet you in El Cerrito for lunch? It looks like there are several restaurants close to I-80 where we could meet and we relax so much better once we're over the Bay Bridge. Let us know what you think.
Bill and Billie
We came up with a plan for next week. We will be leaving San Francisco around 9:00 or 10:00am on the 31st. We will be spending the night in Sacramento with some friends. They won't be available until after 3:00 pm but we don't have to be there that early. So, that gives us six hours or more to get there, and, even with traffic, it has never taken us more than three hours. So, could we meet you in El Cerrito for lunch? It looks like there are several restaurants close to I-80 where we could meet and we relax so much better once we're over the Bay Bridge. Let us know what you think.
Bill and Billie
Hi Bill and Billie,
What
about stopping by our home? We live pretty close to the freeway, so we
were thinking we could meet here, then leave in one car to a cafe we
like in Berkeley. From your location in SF, it should only take 35-40
minutes to our house at XXX Liberty Street, El Cerrito (from San
Francisco, take the Potrero exit off I-80). What do you think? Thanks
for the blog link, Billie.
Glenn
May 28,
So,
a plan is in action and we will be meeting Glenn and Michele in three
days. We'll go from the Inn to their house, then on to a restaurant for
a bite of lunch, and then we'll join Joe and Gee in Sacramento for an
evening of fun. We haven't seen them in so long and we miss them. We'll
spend the night in the same hotel as them and in the morning, if they
are up early, we'll have breakfast before heading back to Reno for an
appointment with Dr. Keiner. Bill's shearf has healed so well, that
we're sure he'll be pleased and ready to go on to the next step of
trimming and shaping, soon.
May 29
We went to St. Mary's Hospital for the PET scan this morning. I wondered why Bill was so extremely tired after having had a good night's sleep. When he talked he sounded a bit drunk. I found out after the scan that he had taken a full Xanax so he would be relaxed during the scan. He was relaxed, all right. He slept through the whole thing. So, it was a nice easy morning for him.
After that, we went to IHOP for breakfast, and then we did some errands. While we were running around, he got a phone call from one of the shopping companies for which we do mystery shops. They pleaded with him to evaluate a McDonald's in Stead, which is about 10 miles out of town. They were offering a bonus to get it done today. So, we drove out to Stead. A half hour later, just as we were leaving McDonald's, I got a call, asking me if I could evaluate the McDonald's in Sun Valley. They were offering the same bonus, and Sun Valley was on the way home, so I said I would do it. So, we had four meals, costing $26.00, (for which they reimburse us, along with $26.00 for each shop) but we don't eat McDonald's food. After leaving the second McDonald's, we drove over to two shopping centers nearby, and gave the food away to people sitting with signs asking for help. We always feel so good after doing that and the people are always so gracious. We make money for an easy assignment, and people get hot meals. All that took less than an hour, and we had fun doing it.
Tomorrow we are going to leave early for San
Francisco, get the chemo out of the way, and then we will have a mini
vacation until Friday afternoon. We are lucky to have such wonderful
neighbors in Micky and Maxine, because we know they will take good care
of the dogs.
We are looking forward to meeting Glenn and Michele and spending some time with Joe and Gee and their grands, JP and Lucas.
June 1 - note - henceforth, we will be calling the treatments Yervoy, which is the other name for Ipilimimab. It is easier to type and to say not to mention that I can never remember how to spell it.
June 2
June 7
Bill had the gold seeds implanted in his adrenal gland today. This is the first step in the radiation process. It was pretty routine, except the doctor had to go through his lung to get at the gland, so we were at the hospital for six hours for a 45 minute procedure, because they had to observe him for a while and then they did a chest ex-ray to make sure his lung hadn't collapsed. Bill said that when the radiologist walked into the MRI room, which is where they did the procedure, he said he was going to implant the seeds into his left adrenal. Bill told him that was wrong - is was supposed to be the one on the right. The doctor brushed him off, and said, "Well, I'll make sure before I start." The sedative chose that exact time to start working, so Bill wasn't able to question him further. He told me when he woke up, and I checked with the nurse, who assured me that they put the seeds into the right side. We would rather not have to deal with that doctor again. After not having anything to drink or eat since midnight, he wanted a Blizzard and watermelon, so he had half of a Blizzard on the way home, and he will have the other half with watermelon for dinner. Yumm!
He has an appointment at Cyberknife next week to map out the radiation treatments. In the meantime, he has been going to physical therapy as often as possible, and I think it is helping his range of motion on the left side. We've also been swimming almost every day and that helps, too. If he can't use his arm well, Bryanna and Bailey would have to be dragging him in to shore whenever there are waves when we go to Maui in a few weeks.
Bill mentioned that we had to cancel our trip to Monterey last year. We were going to take the girls there for a mini-vacation, but he started getting those terrible headaches. He is so worried that something will happen that will cause us to have to cancel our trip to Maui. We are both determined not to let that happen.
June 9
Our 44th anniversary was yesterday. We had lunch at BJ's BBQ and spent the rest of the day moving furniture and enjoying our semi-beautiful yard. As always, it is a work in progress, but I have been working a little bit almost every morning to get rid of weeks, and cut back some of the larger plants. Kathy came over to help me move the TV and then she picked a whole bunch of cherries because we wanted to get them off the tree before the birds took them all. We are very happy with the way we positioned the furniture because we can sit in our chairs and see the backyard.
Bill hasn't had any unusual side effects from the
Yervoy last week. His ear continues to heal well. He will see Dr.
Kiener on Monday. He said he won't be making any changes to Bill's
shearf until after we get back from Maui in late July.
June 12
May 29
We went to St. Mary's Hospital for the PET scan this morning. I wondered why Bill was so extremely tired after having had a good night's sleep. When he talked he sounded a bit drunk. I found out after the scan that he had taken a full Xanax so he would be relaxed during the scan. He was relaxed, all right. He slept through the whole thing. So, it was a nice easy morning for him.
After that, we went to IHOP for breakfast, and then we did some errands. While we were running around, he got a phone call from one of the shopping companies for which we do mystery shops. They pleaded with him to evaluate a McDonald's in Stead, which is about 10 miles out of town. They were offering a bonus to get it done today. So, we drove out to Stead. A half hour later, just as we were leaving McDonald's, I got a call, asking me if I could evaluate the McDonald's in Sun Valley. They were offering the same bonus, and Sun Valley was on the way home, so I said I would do it. So, we had four meals, costing $26.00, (for which they reimburse us, along with $26.00 for each shop) but we don't eat McDonald's food. After leaving the second McDonald's, we drove over to two shopping centers nearby, and gave the food away to people sitting with signs asking for help. We always feel so good after doing that and the people are always so gracious. We make money for an easy assignment, and people get hot meals. All that took less than an hour, and we had fun doing it.
 |
| What? You're Not Taking Us With You? |
We are looking forward to meeting Glenn and Michele and spending some time with Joe and Gee and their grands, JP and Lucas.
June 1 - note - henceforth, we will be calling the treatments Yervoy, which is the other name for Ipilimimab. It is easier to type and to say not to mention that I can never remember how to spell it.
We
had a wonderful drive over to San Francisco on Wednesday morning, once
we made it through the construction on I-80. At El Cerrito, we detoured
via the Golden Gate Bridge, and found that it made a world of
difference in our stress level. We made a 16 mile trip that would have
taken from 45 to 80 minutes, into an enjoyable drive of 40 miles that
took one hour. The difference was that we were driving the whole time
instead of sitting in a line waiting to get through the toll booth at
the Bay Bridge.
We
got to Dr. Minor's office about one hour early, and after we checked in
at the receptionist window, we turned to find Michele standing ready to
greet us. Glenn was just walking out from his Yervoy, so we sat in the
office and talked for a few minutes, before they headed off to lunch
before his next appointment. We liked each other right away. After
they left, Dana, the one who had set us up to meet each other, came out,
and she was delighted that we had been able to meet so soon.
Bill's
Yervoy treatment went on as usual. We talked to Kristina, who is Dr.
Minor's assistant, about him getting the next three Yervoy treatments at
his Reno oncologist's office. We told her it is really hard on us to
drive over to San Francisco at all, but especially so often.
Financially as well as just having to put up with the traffic. She said
she will talk to him when he gets back from his conference, but she
didn't see any problem with it because he has other patients who are
having their treatments here. We are very concerned about the side
effects because the last time he
had the treatments three weeks apart was when his pituitary was
irreparably damaged and he wasn't able to get the fourth treatment. She
stressed that we have to keep the doctor's office informed about any
oddities.
We
left the office at 3:30 and started our mini-vacation. We got to the
Inn, and the proprietor, Marty, ran across the street to help me park in
the teeny, skinny garage. We decided we would walk to dinner so we
wouldn't have to put the car away again, but once we got inside, we
discovered that Bill's book and the calendars had been left behind, so
we put our suitcase in our suite, and headed back downtown in the
traffic to get them. But, aside from trying to get back before they
closed at 5:00, it was still fun, because we took different streets than
we had taken before, so we got to see different things. We drove on
Haight Ave. which was the hippie area in the 70s. There are still lots
of funky shops and people there.
So,
we left the doctor's office at 4:45, and went to Haystack Pizza for a
fantastic salad and pizza dinner. We got back to the Inn at 6:15 and
were lucky enough to find a parking spot three houses away. It was
lovely of Marty to let us park in one of their garages for free, because
it normally costs $20.00 per night, but I was glad I didn't have to
park in that garage again. We went inside and spent 45 minutes talking
with Marty. He is so interesting and he loves to talk. We learned about
his son, Anthony, who moved to Thiland, and has become a popular
recording artist. Marty showed us some of his youtube videos, and we
agree that he is a wonderful singer. He has a deep sound like Nat King
Cole.
We
had a nice relaxing evening, and went to bed around 9:00, but Bill was
only able to sleep until 11:30. He just couldn't get comfortable so he
spent most of the night on the couch, watching TV. At about 4:00, he
climbed into the bed, and fell asleep until 7:30, so he did get a few
hours of sleep. We had breakfast, and talked to Lisa, one of Marty's
helpers, before leaving at 9:30. When we went outside, we realized why
we had been able to find a parking spot on the street the night before.
Thursday is street cleaning day, and there is no parking allowed
between 9 and 11. We immediately thought the car might have been towed,
and we were relieved to see it was still there, all alone. Then we
thought we must have a ticket, but we were wrong about that, too. So,
it all worked out perfectly.
We
went ahead and took the Bay Bridge, because we figured there shouldn't
be too much traffic. Again, we were lucky, and we made it the 16 miles
to Glenn and Michele's house in 25 minutes. The plan had been to go to a
restaurant for a light lunch and visit for a little while. But they
had changed the plan, and we were very glad they did. They were
gracious hosts, showing us around their 1920's house before serving us
coffee. While lunch baked, we talked, and got to know each other. They
are about our age, and they have no children, but they do have a good
support group in their friends. I'm so glad they reached out to us,
because Bill and Glenn are going to be good for each other. Although
Glenn started out knowing about his melanoma ten years ago, he only had
some skin lesions which were removed, so he has only been dealing with
his metastasis since November.
We
had a wonderful lunch, but I don't remember what it was called. It was
sort of like a bread pudding, with ham, cheese, onions and spinach, and
she served it with a salad. We thoroughly enjoyed the meal, and
spending time with them. Before we knew it, four hours had passed, and
we had to get going in order to make it to Sacramento before the traffic
got heavy. It seems we are always trying to finagle a way to avoid
traffic these days. We said our goodbyes, but before we left, Michele
got a large grocery bag, and filled it to the top with huge lemons from
their tree. We are going to keep in close contact, and we will go back
to see them the next time we have to go to San Francisco. We hope that
when Glenn is more comfortable traveling, they will come here to visit
us, too.
We
got to Sacramento in one and one-half hours, and it was a great drive.
We checked into the hotel and suddenly Bill said, "We have to go back to
their house!" Well, he didn't mean it, but he was upset that we had
forgotten to take pictures. We had planned to get some shots of the
four of us for the blog. We will just have to do it next time.
When
Joe and Gee were finished at the dentist, they came over to pick us up,
and we went to the Spaghetti Factory for their yummy Mizithra pasta,
which Gee and I adore. We had such a wonderful time talking about
everything. It is so hard to catch up after not seeing them for almost
two years. We went back to their hotel room, and Joe made cocktails.
We had given them three of the lemons, an Joe cut one of them. It
filled the whole room with a wonderful fragrance. We stayed up drinking
(a lot) until after midnight, a rarity for us. Joe took us back to our
hotel, and we had a fantastic sleep. Sometimes having a little too much
to drink can be a good thing.
 |
| Grapefruit Sized Lemons |
In
the morning, we checked out and drove over to their hotel for breakfast
at 9:00, and we sat there in the lounge, talking until after noon.
Finally, we had to leave hoping to beat some of the traffic going over
the hill. After we left, we realized that we had, again, forgotten to
take the camera out of my purse, so we don't have any pictures of the
four of us either.
We
had a good drive home, and noticed that all of the heavy traffic was
going toward the Sacramento area. We hope the road construction is over
soon. It would be good if, when Scott and Jenn fly to San Francisco in
August for Dad's memorial, they can drive here without the tie-ups. We
have some San Francisco tourist information, and some cute maps for the
boys that we will be sending soon for their trip.
June 2
Bill and Billie,
I
am very grateful for your visit yesterday. Although I kind of lost it
during our goodbyes, my tears came from being a bit overwhelmed that you
spent the time with us and talked freely about your experiences with
melanoma. It was also just good to get to know you. We value the
friendship you've offered.
So
what did I do today? After spending a crappy morning with our dear
friends diarhea and nausea, I pulled myself back from the brink of a
perfectly lousy day, got on my stationary bike and pedaled my way just
shy of nowhere. It took some effort to keep my left foot on the pedal,
but I managed long enough to increase my heart rate and work my legs
just a bit. But knowing my tendency to push it beyond what's reasonable,
Michele told me to stop right there and helped me off the bike.
Actually, getting on and off the bike was the most strenuous part of the
exercise. Things just don't work quite the same when you have a bum
leg.
Oh, and I also drove to the vet this afternoon.
All in all, a good day. More to come.
We look forward to the next time we can get together. Thanks again for your kindness.
Glenn and Michele,
We
had such a good time visiting with both of you on Thursday. We
couldn't believe when we saw that four hours had flown by. Thank you so
much for hosting such a delightful lunch and for letting us into your
home. I just made a Facebook request for both of you, so I guess you're
going to be stuck with me. Bill was very upset that we forgot to take
pictures of the two of you, as well as a group shot of the four of us.
Do you have one you could send us via email?
Glenn,
we are both so proud of you for getting up on that bike. You wanted to
so much, but you were afraid, so we know it took a lot of courage.
Didn't it feel great to do something that felt normal? Maybe you could
use a small, thin bungee cord to keep you left foot where you want it.
That might take away some of the challenge. As far as getting on and
off, that should come more easily every time.
Michele,
when you said that you wish friends had done more to help, as in
bringing over a meal, I was amazed. I had thought I was just being
silly in thinking that, but two great minds can't be wrong, so yes, our
friends could have done more for us. But, I do understand, because I've
been the one who said, "If there's anything I can do, please don't
hesitate to call." So, I learned a lesson, and the next time one of my
friends has a challenge, I will be doing some cooking, or heading out to
the garden to cut some flowers, or just dropping by to sit and talk.
We
had a wonderful time with our Maui friends in Sacramento. I have to
admit that when we got back to their hotel room, we let Joe make us far
too many cocktails
but we were having such fun talking about everything, that we hated to
leave. Bill had a much better sleep than he had the night before in the
B & B, so he woke up feeling refreshed We had a nice breakfast in
the morning, and got home about 3:30 in the afternoon, having had a
smooth drive home with little traffic. It appears that the construction
in the eastbound lanes of I-80 is nearing it's conclusion, and we will
be thrilled when we can, once again, sail through with the cruise
control set on 60 all the way.
We just had dinner, and are going to settle down to watch our DVR'd So You Think You Can Dance, so I'll say goodnight.
Love,
Billie
June 7
Bill had the gold seeds implanted in his adrenal gland today. This is the first step in the radiation process. It was pretty routine, except the doctor had to go through his lung to get at the gland, so we were at the hospital for six hours for a 45 minute procedure, because they had to observe him for a while and then they did a chest ex-ray to make sure his lung hadn't collapsed. Bill said that when the radiologist walked into the MRI room, which is where they did the procedure, he said he was going to implant the seeds into his left adrenal. Bill told him that was wrong - is was supposed to be the one on the right. The doctor brushed him off, and said, "Well, I'll make sure before I start." The sedative chose that exact time to start working, so Bill wasn't able to question him further. He told me when he woke up, and I checked with the nurse, who assured me that they put the seeds into the right side. We would rather not have to deal with that doctor again. After not having anything to drink or eat since midnight, he wanted a Blizzard and watermelon, so he had half of a Blizzard on the way home, and he will have the other half with watermelon for dinner. Yumm!
He has an appointment at Cyberknife next week to map out the radiation treatments. In the meantime, he has been going to physical therapy as often as possible, and I think it is helping his range of motion on the left side. We've also been swimming almost every day and that helps, too. If he can't use his arm well, Bryanna and Bailey would have to be dragging him in to shore whenever there are waves when we go to Maui in a few weeks.
Bill mentioned that we had to cancel our trip to Monterey last year. We were going to take the girls there for a mini-vacation, but he started getting those terrible headaches. He is so worried that something will happen that will cause us to have to cancel our trip to Maui. We are both determined not to let that happen.
June 9
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| Cherry Tree |
 |
| The Roses Are Especially Nice This Year |
Our 44th anniversary was yesterday. We had lunch at BJ's BBQ and spent the rest of the day moving furniture and enjoying our semi-beautiful yard. As always, it is a work in progress, but I have been working a little bit almost every morning to get rid of weeks, and cut back some of the larger plants. Kathy came over to help me move the TV and then she picked a whole bunch of cherries because we wanted to get them off the tree before the birds took them all. We are very happy with the way we positioned the furniture because we can sit in our chairs and see the backyard.
 |
| June 9 |
June 12
Mad, upset, totally pissed, and frustrated are mild ways of expressing what I feel right now. We talked to Dr. Minor's assistant last week, to explain that we wanted Bill to have his Yervoy treatments at his oncologist's office here in Reno in the future. We said we would be happy to go to San Francisco for him to be monitored by Dr. Minor every few months if necessary. The main reason for this is that the drive makes me crazy, and it is very expensive for us to stay there overnight and have meals there. Today, we found out that our insurance won't pay for treatments here because Bill is on maintenance. They will only pay for the initial four treatments. At $60,000.00 per treatment, that's a little too much for us to handle. So, we will be making the trip from Hell next week, and again on the 23rd a few days after we get home from Maui and then again three weeks later. Bill is taking it better than I am, just because he is so much more even tempered than I am, and he takes things in stride better. I'll get used to it, but nobody had better mess with me tonight!
June 14
Bill had an appointment this morning at 10:30 for mapping at Cyberknife. But, he forgot to write the time on the calendar, so he thought we were supposed to be there at 8:30. So, because we're always early for appointments, we got there at 8:00. When she told him his appointment was at 10:30, we decided we'd run over to Denny's to have some breakfast. Then the receptionist stopped us and said they might be able to do his mapping early because they had few coming in for the next hour. They were able to get it done so we got out of there by 9:00. It was neat to have the rest of the day free.
We went over to the park so I could check out the display where I'll be working for Reno Sunrooms this weekend. The event is the River Festival and I'll be able to enjoy the events while making some extra money. I "worked" from 9:00 until 3:00 today but most of the time was spent in the office just shooting the breeze with David while I waited for him to print the masters for the flyers, so I could make copies. It wasn't a bad way to make $100.00.
June 19
The River Festival is over. It was hot and busy. The people were there for the food, beer and fun, so I only got 14 leads, which was about 1/3 of the amount I would have gotten at a home show. I'm glad it's over. Ten hour days outside in 90 degree heat takes its toll.
Bill had his first Cyberknife radiation treatment yesterday. It took a little over two hours. They had told him that he shouldn't have any effects, but as soon as he walked out from the treatment, he said his side hurt. This morning, he feels as if his right lung is collapsing at the bottom, because he can't breathe deeply. He is going to ask to see Dr. Shuff, the radiation doctor, as soon as we get there this morning.
Also, he has been waking up with the scar on his neck hard as a rock, and hurting a lot. I took a picture of it when we got up today, so I can show Dr. Keiner when we see him on Friday. Tomorrow will be our San Francisco day, and we'll be leaving here at 5:00 am for a 10:30 treatment. We are going to have dinner with Glenn and Michele, so we are looking forward to a nice relaxing evening. Thursday, we will have to leave San Francisco by nine in order to get back here for his last Cyberknife treatment at 2:00. We certainly can't say we lead a boring life.
Same day, 5:00 pm
Bill was at Cyberknife for almost three hours this morning, so I had to cancel his physical therapy session for today. He was having pain in his lung, kind of like pleurisy, which hurts like the devil. After the therapy, they called me in to one of the treatment rooms and we met with the doctor, who explained that some pain is not unusual, and it should go away. In the meantime, he is hurting, and the only thing he can do is take Tylenol. Right now, he is exhausted, so he will probably be heading off to bed because we have to be up by 4:00 tomorrow. On a good note, his visit with his dermatologist was good and she said he looks great. Isn't it too bad that we can look great when we feel icky?
June 22
Our drive over to San Francisco on Wednesday morning was perfect. I tried going through Sacramento on the through-town freeway instead of taking the usual way which is supposed to be faster. We got through town so much faster than before and it was right during the 7:00 to 8:00 am rush. So much for going around the city to avoid traffic. We also went around to the Golden Gate Bridge, so our trip time was 4.5 hours. Not a record, but extremely acceptable.
Our appointment wasn't until 11:30 and we got to town at 9:20, so we headed over to the Inn. Our room was still being cleaned, but Lisa insisted we go into the parlor and have breakfast, so we had a nice relaxing hour before heading over to Dr. Minor's office. Bill's treatment went as usual, and Dr. Minor sent him down for a chest x-ray because of the lung pain he has been having. There could have been a bubble causing the pain. The x-ray showed there are no problems and we got the results of the PET scan from last month. The only evidence of cancer is the spot on his adrenal gland, and we are working to eradicate that with the Cyberknife treatments and the extra Yervoy.
Because of having to stay at the medical center for the x-ray and another stop at Dr. Minor's office, we didn't get back to the Inn until almost 4:00, and we expected Glenn and Michele sometime after 4:30, so there really wasn't time for a nap, but at least we were able to rest for a little while.
Michele and Glenn got to the Inn and chauffeured us to the restaurant. They brought us a delicious bag of their lemons to bring home with us. We had a lovely, relaxing dinner, and caught up on all the latest news. Glenn was in the hospital for five days with water on his lungs. He had just gotten out on Monday, but he told us that he had really been looking forward to our dinner. He and Bill didn't eat much, but Michele and I made up for them. We did choose to skip dessert. Glenn is having some of the unfortunate side effects from his drug. The Yervoy wasn't the right drug for him, so he is getting something else, for which Bill is not a candidate. The two of them were so strong considering they both would have liked to be able to go to sleep at 7:00.
After dinner, they went back to the Inn with us. Lisa had provided us with extra towels and bathrobes, so we all got into our swimsuits and hopped (insert poetic license, here) into the hot tub in the garden. There was a newlywed couple from Worchester, England out there, and we had a very interesting conversation with them. Glenn lasted for quite a while out there, but he was getting exhausted, and Michele had to work early the next morning, so they left at around 9:00. We fell asleep almost right away and both of us slept like logs. Again, just like the last time, we forgot to take pictures with Glenn and Michele. We will try again in July when we go for the next Yervoy treatment.
Yesterday, we had a leisurely breakfast, but we were antsy to get started because Bill had a 2:00 appointment at Cyberknife, so we got on the road at 8:50. We had a great drive home, with no issues, and we got back to Reno at 1:00. We even had time to stop at Baskin-Robbins for an ice cream before the appointment. It was the last one. The side effects are extreme tiredness, almost as bad as when he was on the Interferon injections. We got home at 4:00, so he had time for a nap before meeting Kathy, Rommie, and the girls for dinner at the Grand Sierra at 7:00. We had no idea why we were going there. All we knew was that Kathy had asked us which night worked for us, and we had chosen the 21st. After dinner, we walked through the shopping area downstairs for a few minutes, and then went over to the Zeigfield Room where we were treated to a performance of Viva Le Cirque. It was a wonderful surprise and the performers were outstanding. We got home at 11:00, fell into bed, and were asleep almost immediately.
In two days, we will be leaving for Maui. We can't wait!!
June 23
The morning began simply enough. I had fed the dogs and was making coffee, when I heard Bill call me from the bedroom, and then I heard a crash. When I got there, I found him lying half in and half out of the shower, with his arm under the doors, which had pushed in. He was wedged between the toilet and the base of the shower. He was moaning and saying that he was throwing up. I was beyond scared. He was dead weight so I couldn't lift him. I'm afraid I didn't think very well, because I phoned Kathy instead of 911. She said to call 911 and that she would be right over. But, first, I wanted to pull him out of the bathroom so his head wouldn't stay wedged in that tight spot. I was able to get him to calm down and respond and he was able to scoot out of the bathroom on his back. He said he was burning up, so I put a wet towel on his face and neck, and turned the fan on facing him. All that seemed to take hours, but it was really about five minutes. By then, he was lying on his side on the carpet, so he was more comfortable and he had calmed down enough to be able to talk about what had happened and why. He came to the conclusion that he'd had a panic attack. He had been thinking about finishing the packing today, juggling the luggage and getting on the plane for Hawai'i on Monday, and he started hyperventilating and being scared that something would go wrong and he would ruin the trip for Bryanna and Bailey. After lying on the floor for a few minutes, he was able to crawl back to the bed, and I lifted him into it. Kathy got here a couple of minutes later and it helped me a lot to have here here with me. She also repaired the shower doors and rehung the picture he had knocked off the bathroom wall. She sat with me and we had coffee for a while before she headed for home. He was feeling fine, but completely worn out. He has been sleeping for over an hour, but I'm checking on him every few minutes to make sure he is okay.
My adrenalin level has returned to normal, and I am enjoying looking out the sunroom windows, watching the breeze blow the trees and the beautiful roses in our yard. We've had our drama for the month, so from now on, we can look forward to our trip.
3:00 pm
After the excitement this morning, Bill slept until noon, although with me checking on him every ten minutes, I don't know how he got any sleep at all. He felt fine when he got up, except he is really tired. The Cyberknife people said to expect that, so tired is just fine. He is now taking a nap, because we got packed for our trip and we are ready to walk out the door.
July 1
The first week was pretty rough, with Bill feeling mostly too tired to do much, but trying his best to do everything. He had a couple of meltdowns, and slept a lot, and, for the last two days, he has felt pretty good. We've been swimming for an hour in the morning, and doing things around the condo and with the girls. We are almost done with the work, after only six days, so we are ready to start the real vacation! The Travel Blog has everything we've been doing. If you aren't already following that one, you can see it at - http://finallyafterfouryearswearegoingtomaui.blogspot.com/
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| Papanalahoa Point on the north shore of Maui - on Death Road! |
July 1
Glenn Update:
Hello everyone.
Thank you for your calls and emails. I will get back to you individually as soon as possible, but I wanted to let you all know what was going on, as I realized it's been quite a while since I'd written.
Unfortunately, the 4 immunotherapy treatments (Yervoy) that Glenn had received for the last three months didn't have the hoped for results. In fact, there were a few new spots that were seen on the PET scan. In addition, the doctor noticed some fluid around Glenn's lungs that he felt should be drained so back to the hospital he went. (For those of you that appreciate the "grossities" of such procedures: they removed 1.8 liters of fluid; 4 bottles worth. Glenn made me take a picture of ithem, available upon request.) They also wanted to do a liver biopsy, to see if he was a candidate for another new treatment that has yielded some really good results. It is an oral medication called Zelboraf. It only works for patients whose tumors exhibit a gene mutation called BRAF positive; a 50-50 chance.
Glenn came home from the hospital after 5 (loooong) days, and the doctor decided to start him on the Zelboraf anyway. As you can imagine, we were pretty anxious to hear if he was BRAF positive, and last Wednesday we found out HE WAS! So he is on the new medication, and seems to be feeling better. His appetite is much improved, and, although it's a sacrifice on my part, I do partake of the frequent chocolate milkshakes he makes. It's part of my wifely duties.
I'm back at work for the summer semester. Originally I was working 4 days, but now I am working 2 which seems a bit more manageable at this point. Glenn is working 12 hours a week from home, and though he says his brain is muddled, he still sounds pretty coherent to me when he's on a business call. But of course my brain is also muddled, so who knows?
We're enjoying this lovely (global warming) summer we're having, and have put a comfy new lounge chair on the back deck where Glenn can hang out and play with all his electronic toys. Some things never change.
I hope you are all well. Again, thanks so much for all your support. We truly appreciate it
Dear Michele,
We
enjoyed your update. Of course, we knew the disappointing part about
the Yervoy and about the hospital stay from our visit with you a couple
of weeks ago. But, what a wonderful thing to find out that he is BRAF
positive and will be able to have the Zelboraf. Also that he is feeling
so much better. We have been praying that would be the case, so now we
can turn our thoughts to the Zelboraf doing its job to kill those
cancer cells. Has he been able to get on the bike and how is he doing
at walking?
Bill
had a rather bad week after the radiation treatments. He had excessive
tiredness and he could never be too far from a bathroom. He did such a
good job on our travel days of not seeming to be sick, but he felt like
c**p and had zero energy. Once we got here to the condo in Maui, he
did what he could to get some of the things done that needed doing and
he went with us to the beach, even though he could hardly walk. Two days
ago, he started feeling good, and it has made such a difference in what
he can do. We have most of the work done here, and he is more able to
look forward to the rest of our stay.
We'll
be back in San Francisco on July 22/23 so let us know if you two will
be able to get together for dinner and maybe try the hot tub again??
Love,
Billie
July 10
 |
| Sad |
I got him on a non-stop flight to Oakland leaving at noon. Kathy and Rommie met him there tonight, and will stay with him and drive him home. He insisted that the girls and I continue on here. I am not thrilled with that but I understand. It will hurt so much to have him leave. He flew first class, had a wonderful meal of mahi mahi, got a device loaded with movies and TV shows to keep him entertained, and enjoyed several cocktails. I asked him if he had pretended to have to go back, just so he could fly first class. He will call tomorrow with an update.
July 11
 |
| Bring me food!! |
Then Bill called me when he got home. He was feeling good. There are advantages to him going home early. In the next few days, when he feels well enough, he will unpack, do some marketing and pick up and go through the mail. That means that when I get home, all I will have to do is unpack my suitcase and rest up from this vacation.
July 21
Bill did alright after he came home early from our
trip. I got home at 1:30 am Friday morning,
and we got to bed around 3. Friday and
Saturday, we’ve both, mostly napped throughout the day. He has been really tired from the drugs he is
taking. He is also grumpy, but I guess that goes with feeling the
way he does.
He has gained 20 pounds in the
11 days since he left Maui, but he is eating very little, so it must be due to
the steroids. We will ask Dr. Minor about that. Tomorrow, we have to go to San
Francisco. Dr. Minor said Bill won’t be
able to have his Yervoy treatment until the diarrhea is under control, so he
will be having another treatment of the drugs that are supposed to do
that. Aside from the mild diarrhea and
exhaustion, he is feeling pretty well.
July 23
We both felt good when we woke up yesterday, and we had a nice time on the drive, and at the Inn.
 |
| Getting comfy |
Bill wasn't even tired when we got there about 2 in the afternoon, so we played a new card game, Quiddler, for an hour until our dinner was delivered, and then we played again for two hours after we ate. We soaked in the hot tub until we couldn't stand the heat anymore, and by then, he was totally ready to go to sleep. It was only 7:30, so I watched TV for an hour until I felt sleepy. Good old Nick At Night was playing Andy Griffith Show, so I got to watch the antics of Barney and good ole' Anj.
Bill's treatment went very well. He had no effects from it. He won't be able to have the Yervoy treatments until Dr. Minor is satisfied that the Colitis is cured. Dana, who is one of the nurses who administers the drugs in Dr. Minor's office will be in Reno on August 2, giving a seminar on Yervoy, but, because of Bill's dad's memorial, we won't be able to go to it. She gave us the transcript and Bill read it to me on the way home. We had done so much research that we already knew a lot of the information in it, but we learned some new things. Colitis is one of the rare side effects that can be life threatening if left untreated, and the cancer can't be dealt with if it appears and is severe.
Bill will be having his, now, bi-monthly PET, CT and MRI this coming Friday and Monday, and we will go back to San Francisco on August 13. Dr. Minor said that, aside from the colitis, Bill is doing great. He is starting to taper off the Prednisone, which sometimes makes Bill turn into an evil tempered old thing, so we are very grateful for that.
July 28
Bill is about the same. He can't eat anything but white bread, potatoes without skin, peeled apples, well-cooked meat and pasta. He wants real food, but found out that if he cheats at all, he pays for it big-time the next day or three. He is extremely tired, so he mostly sits and reads or watches TV until he dozes off. I have been able to get him to go to the pool in the mornings, so, at least, he is getting a little bit of exercise. We can't make any kind of plans, not knowing how he will be feeling or if he will be able to eat real food in the coming weeks.
At the hospital on Friday, the techs were able to get all three of his tests done on the same day, so he won't have to go in tomorrow for the MRI. The downside of that was that he had nothing to eat from 6:00 am until we got home from the tests, so he went almost 12 hours between meals. He is supposed to eat something every three hours. That really messed him up. We think that might be why he is so extra tired today. It just took time to catch up to him.
August 1
It has been a rough few days. After feeling pretty good last week, Bill has been in an pit since Sunday, and he couldn't get out of it. No energy, so I had to help him get out of bed most of the time, which is awfully hard when he is getting up 10 times a night to go to the bathroom. Then, on Monday, he had a fever and severe chills. I called our Angel, Dana, at Dr. Minor's office and she gave me some advice on what to do as far as diet and drugs for him. But, yesterday he was worse, and today, he spent from 6:00 am until almost 7:00, vomiting, but not getting anything up. He was as weak as he was when he was on the Interleukin. It was very scary. But, suddenly, the nausea went away, and he said he thought he could sit up for a while, so I put a chair in the shower, he was able to take a shower with my help. I got him into clean clothes and gave him a small shake made with vanilla yogurt, 1/4 scoop of protein powder and a little bit of V8 Fusion. He enjoyed it, but didn't want anything else. After Dr. Minor's office opened, I called Dana, to report on the daily symptoms. She knew he desperately wants to be able to go to the memorial for his Dad tomorrow, and I hoped she could suggest something else to do. She said to take him to the ER for a blood panel and IV fluids, to see if any of his levels were low.
Scott and Jenn and the boys and Kathy and Bailey, got there just then, and I recruited Scott to take Bill to the hospital, so I could pick Tony and Anais up at the airport. Kathy and Jenn took all the kids to Kathy's house for a little while and I left for the airport. After they arrived, we drove over to check them in at the Nugget, and we checked in with Jenn and Kathy, who met us at the coffee shop for lunch. It was so nice to be able to get together for a little while with people I love and know that Bill was in good hands. The boys are so full of fun, and Carson is quite the wit. Brendan is a little quieter than Carson, but he is also quite funny.
After lunch, Tony, Anais and I visited Bill at the hospital for a few minutes. He'd had abdominal xrays, was still on the IV, and was dosing, and Scott had gone somewhere to grab some lunch. We talked with him a little bit, but wanted him to sleep, so we left after only a few minutes.
Then the three of us drove as far as Bower's mansion in Washoe Valley so Tony could take photos for his Reno blog. He said he got some great shots. Scott kept us informed by text of Bill's condition. The xrays showed that there is no obstruction and his blood panel was good. While we were stopped near the huge new bridge for Tony to take pictures, Dana called to let me know that the PET, MRI and CT results were great. The new tumor has shrunk, which was the news we had been hoping for.
When I got home, Bill was sleeping comfortably in our bed for the first time in four days. I think we will sleep well tonight, and tomorrow will be a great day for him. Monique and Brian might drop over tonight, but if Bill is sleeping, they won't mind not bothering him, and spending some time with me. We are honored that they wanted to drive for eight hours to be here for us. They have been such wonderful support for both of us.
August 3
Dear Joe and Gee,
Dear Joe and Gee,
Thank you so much for your support. I'm sorry I haven't responded
to your text from August 1. Bill wasn't doing well and I had my hands
full since Sunday. He was having diarrhea around the clock and he was
terribly weak. I was in communication with Dana, the RN at his
oncologist's office and we were trying to get him well enough to be able
to attend the memorial on Thursday. Scott and his family got to Reno on
Tuesday evening, and went to dinner with Kathy and Rommie and the
girls, but we couldn't go because of Bill.
I know you'll be mad at me because I didn't let anyone know what was going on. I wanted the kids to have a good time and Scott was only going to be here for two and a half days. On Wednesday morning, from 4 to almost 6:30, Bill was vomiting and spending his time on the potty, but he was so weak that I had to hold him up while he was sitting there. Just before 6:30, he started feeling better, and I was able to get him into the shower. I got a chair for him to sit on, and I washed him, dressed him, and got him into the sunroom on his chair. He was able to drink some juice. I called Dana with my morning report, and she said the best thing to do was to take Bill to the ER for a chem panel and abdominal x-rays to find out if there was a blockage. (If there had been a blockage, how could so much have come out of him?)
I made an executive decision because I was about to fall apart. Since Bill was drinking, and was feeling 50% better, I waited until Scott's family got here along with Kathy and the girls. We had said they could come over as soon as they got up. They were going to take us to breakfast before we picked Tony and Anais up at the airport. Instead of breakfast, I recruited Scott to take Bill to the hospital, and Kathy and Jenn took the kids swimming at the Nugget, (that's where everyone stayed while they were here.) I left for the airport, where I sat in the car at the cell waiting lot, and read my book for a quiet, peaceful 20 minutes until Tony and Anais were at the luggage area waiting for me to get them.
I took them to the hotel, and they got checked in. Tony is able to work magic, much like you do when you work the system with Priceline. He got a suite on the 26 floor, with wall to wall windows on two sides for only $38.00 per night. I waited in their room while they got settled, and we went to lunch, as they hadn't had a meal for over eight hours. We were getting texts from Scott about Bill's progress. He was feeling groggy from the IV medication they gave him to control the D. and he was dozing, waiting for them to take him to x-ray, so we knew he was in good hands.
The diagnosis was that he was severely dehydrated. I swear, I was making him drink so much that I was afraid he would float away, and Dana later told me that I couldn't have prevented it because it is really hard to replace the fluids that are being lost. After lunch, we went to the hospital and the kids talked to Bill for a few minutes. Then we went for a drive so Tony could take pictures, which is his passion. Dana called while we were at a park, and told me that the scans from last Friday showed that the latest tumor has shrunk. What wonderful news. I had a wonderful day and Scott got to spend some quality time with Bill. Scott called me around 3 to tell me that he was taking Bill home. He got him into bed to sleep until the medication could wear off, and I got home about 30 minutes later after dropping Tony and Anais off at the hotel.
Our friends, Brian and Monique, who had just arrived, and the kids all went to dinner and called to see if I wanted to go. One of them would have babysat if I had but I really didn't want to go. I let them know when Bill got up, that he was feeling way better, and they all came over after dinner to visit. Our house was bursting, and it was wonderful.
We had our first good night in over a week, and when Bill got up on Thursday, he said he felt "fantastic." Those words meant so much to me. We spent time with the kids and Brian and Monique before going over to the cemetery. The memorial was very emotional for him.
I know you'll be mad at me because I didn't let anyone know what was going on. I wanted the kids to have a good time and Scott was only going to be here for two and a half days. On Wednesday morning, from 4 to almost 6:30, Bill was vomiting and spending his time on the potty, but he was so weak that I had to hold him up while he was sitting there. Just before 6:30, he started feeling better, and I was able to get him into the shower. I got a chair for him to sit on, and I washed him, dressed him, and got him into the sunroom on his chair. He was able to drink some juice. I called Dana with my morning report, and she said the best thing to do was to take Bill to the ER for a chem panel and abdominal x-rays to find out if there was a blockage. (If there had been a blockage, how could so much have come out of him?)
I made an executive decision because I was about to fall apart. Since Bill was drinking, and was feeling 50% better, I waited until Scott's family got here along with Kathy and the girls. We had said they could come over as soon as they got up. They were going to take us to breakfast before we picked Tony and Anais up at the airport. Instead of breakfast, I recruited Scott to take Bill to the hospital, and Kathy and Jenn took the kids swimming at the Nugget, (that's where everyone stayed while they were here.) I left for the airport, where I sat in the car at the cell waiting lot, and read my book for a quiet, peaceful 20 minutes until Tony and Anais were at the luggage area waiting for me to get them.
I took them to the hotel, and they got checked in. Tony is able to work magic, much like you do when you work the system with Priceline. He got a suite on the 26 floor, with wall to wall windows on two sides for only $38.00 per night. I waited in their room while they got settled, and we went to lunch, as they hadn't had a meal for over eight hours. We were getting texts from Scott about Bill's progress. He was feeling groggy from the IV medication they gave him to control the D. and he was dozing, waiting for them to take him to x-ray, so we knew he was in good hands.
The diagnosis was that he was severely dehydrated. I swear, I was making him drink so much that I was afraid he would float away, and Dana later told me that I couldn't have prevented it because it is really hard to replace the fluids that are being lost. After lunch, we went to the hospital and the kids talked to Bill for a few minutes. Then we went for a drive so Tony could take pictures, which is his passion. Dana called while we were at a park, and told me that the scans from last Friday showed that the latest tumor has shrunk. What wonderful news. I had a wonderful day and Scott got to spend some quality time with Bill. Scott called me around 3 to tell me that he was taking Bill home. He got him into bed to sleep until the medication could wear off, and I got home about 30 minutes later after dropping Tony and Anais off at the hotel.
Our friends, Brian and Monique, who had just arrived, and the kids all went to dinner and called to see if I wanted to go. One of them would have babysat if I had but I really didn't want to go. I let them know when Bill got up, that he was feeling way better, and they all came over after dinner to visit. Our house was bursting, and it was wonderful.
We had our first good night in over a week, and when Bill got up on Thursday, he said he felt "fantastic." Those words meant so much to me. We spent time with the kids and Brian and Monique before going over to the cemetery. The memorial was very emotional for him.
 |
| Bill and Kurt |
Two more of our friends, Susie (who knew Dad from several years ago) and Kurt (her husband,), were there, and Bill's brother Mike and his wife, Gail and their son and daughter-in-law, who all live in Maine, were there, along with a friend of theirs who knew Dad. Four people from Cascades, where he lived were there, too, and they all said they loved him, too. We even had Hannah, a friend of Bry and Bai there. She was our videographer. We wanted to be able to send a DVD to Dad's brother in Texas. The dinner after, at our favorite Mexican restaurant, was fun and tiring. Bill did great. Poor thing had a banana smoothie for dinner, among all those delicious smells. He said it was a gourmet smoothie and he thoroughly enjoyed it.
 |
| All of us plus one |
Scott's family had to leave to drive back to San Francisco after dinner and the rest of us went downtown and walked for an hour (the temp was 101 degrees.) We had a nice time, and we all went back to our house for dessert. Bill went to bed exhausted, but feeling good.
Yesterday,the ten of us who were left went to Virginia City and Carson City. We had a lovely day. The kids went out to Bully's last night to meet up with friends and the four of us watched The Help. Bill lasted through the whole movie. We are being really careful about what he eats, and this morning, he is up and feeling good again.
Brian and Monique and Tony and Anais are going to come over after breakfast until it is time to go to the airport. After that, we will go to the market and then come home and collapse for the rest of the weekend.
It's good to be back to normal. Unfortunately, Colitis is not curable, but it is manageable, so we will be dealing with that, but it is a small price to pay for getting that damn tumor to shrink, and hopefully, die.
Now,
I want to get some news
from you. Where are you, now? Did you know Ennio and Sherry have put
their condo on the market? Paul and Kathy, too, but he is selling it
himself so it might take some time. I loved the pictures of Farrah's
birthday and of course, the
kids. JP and Lucas are getting so big. Isn't it about time for another
baby in the Sacramento area?
Love to you both,
Billie
August 10
The week has gone by rather quickly since all the family and friends left. It has been a quiet week, with only a visit to the dentist on the schedule. Bill is feeling better as far as the stomach upset goes, but he has gotten progressively tireder every day. He took Tylenol PM for two nights, to try to get a full night's sleep, but, because how tired he felt all day, last night he didn't take any sleep aids. We went to sleep at 9:00 last night and this morning, he got up at 7:00, feeling fairly well-rested, but not ready to do a marathon.
Tomorrow, we're going to leave early for San Francisco. We'd rather spend time there, either going to a park, or just in the parlor at the Inn, than be stuck on the freeway. Hot August Nights is wrapping up, and there will be people driving over the pass by the thousands, with their trailers. On Monday, we'll be seeing Kristin, as Dr. Minor is out of town. We're hoping she can suggest why Bill is so tired. We upped his Hydro-cortosone and Prednisone last week, to help with that, but we don't want to keep him on such high doses of the steroids.
I didn't call Glenn and Michele about this trip because, although we would enjoy seeing them, Bill isn't up for being sociable. We'll just spend some quiet time.
August 13
The trip went well, except it took us two hours to drive the last 40 miles. We had a wonderful room at the Inn. They are building a private patio on the back of the room and it will have it's own hot tub, so we will be able to use that the next time we get that room.
I had a slight scare this morning. I went over to the parking garage with our suitcase, and got the car. As I was starting up the ramp, a bummy-looking man walked by, looked down the ramp, and turned to walk into the garage. I honked the horn at him, and he stopped to look at me, then kept walking toward me. I wasn't about to let him in, so I drove toward him, honking. He scooted out. I made sure the door was closed before I pulled out onto the street. Then I drove over and parked in a driveway two houses away from the Inn, so I could get Bill and the rest of our stuff. The man came across the street, and stood next to the car on the sidewalk, looking at me. I didn't want to get out of the car, but he wouldn't leave. So, I had to pull out of the only parking spot that was available. I made a u-turn, and pulled into the driveway at the Inn. There isn't enough room to park there, but they allow loading. The man was still back near where I had parked, so I quickly got out, locked the car, and went in to get Bill. I told Lisa about it, and she looked at the security footage, and found him, so she would know who to watch for. We got into the car without any more problems, and then we saw the man across the street, walking toward the Inn.
The
Yervoy was still off the table this time, but Bill's colitis is
improving. We found out that the tumor is dying. The activity level
was 21 and it is down to 2, so that is the proof we were hoping for. We
had a wonderful drive back, via the Golden Gate Bridge,
We
hit some rain near Donner, but traffic was very light all the way, so
it was a terrific drive. We listened to Stephen King stories, and both
of us stayed awake the whole way home.
August 21
Bill has been getting better every day. after going downhill a bit after all the kids left, he started feeling more awake, and the pains in his legs have diminished. He is also able to eat more normally so it is easier to plan meals. We even went out to lunch with Rommie and Kathy, and he had ham, eggs, fried potatoes and gravy. He felt a little icky after, but he enjoyed it so much while he was having it, and the icky went away by the next morning.
We will be going to see Dr. Minor on Sept 4, the day after Labor Day. We'd rather not drive on a holiday, but we do what we have to do, and, maybe Monday won't be too bad going in that direction. We were able to book the inn so that's all taken care of. I'm going to write to Glenn and Michele to see if they want to get together for dinner on the 3rd.
August 30
I guess things have been too calm, so Bill had to do something to shake things up a bit. At 5:30 yesterday evening, he called to me saying he needed help. He had a fist type pain in the middle of his chest, and he had taken his blood pressure to find that it was 170 over 110. His heart rate was 195. I called 911, and tried to keep both of us calm, but he was trembling and moaning so I was very scared. It took a long eight minutes for them to get here, and they did a wonderful job of assessing the situation. By the time they got here, Bill had calmed down a little, the pain was less, and I had hope that he wasn't having a heart attack. The paramedics were amazing, and they stabilized him, which also calmed him down. By the time we headed to the hospital in the ambulance (without lights or siren, darn it) the pain was gone, and he wondered if they shouldn’t just let him stay home and call the doctor in the morning. Wrong answer, Bill!
I road in the ambulance with him, taking along a few things, like his favorite pillow, his glasses and his book, just in case he ended up spending the night. Kathy was already at St. Mary's when the ambulance pulled in at 6:30. The tests showed that he hadn't had a heart attack and a blood clot in his lung was ruled out by a CT scan. It was determined that he had severe pneumonia in both lungs, but the doctor said that it hadn't been there long, less than 12 hours, so he was started on antibiotics. We thought it would just be an over night thing, but he will be staying until Sunday or longer. Kathy took me home a little after 11, and I tried to sleep, but the dogs and I hung out watching TV most of the night.
This morning, I made him a protein shake, and I got
some things together for him, like his second favorite pillow, his
toothbrush, and some French vanilla coffee mate, and I was at the
hospital by 8:15. He was in a huge room on the cardiac floor with a
beautiful view.
Through blood tests, they found he has "some" heart damage, the extent of which we have yet to find out. He felt good, except for being tired from not getting any sleep, and he ate a good breakfast.
We saw Dr. Thompson, his cardiologist and Dr. Shiff,
one of his Reno oncologists. They explained that the melanoma is on the
back burner for now. They were going to perform an echo-cardiogram, and
an angio-gram to see if there is any blockage. If there is, they will
either do an angioplasty or, if there are multiple blockages, they will
do open-heart surgery. He had the echo at 11:00 and the technician was
very nice to us.
So, now we just have to wait. He slept some today, and had a good lunch of manicotti and broccoli. I left him at 2:00 so he can sleep and not worry about me sitting there worrying about
Love to you both,
Billie
August 10
The week has gone by rather quickly since all the family and friends left. It has been a quiet week, with only a visit to the dentist on the schedule. Bill is feeling better as far as the stomach upset goes, but he has gotten progressively tireder every day. He took Tylenol PM for two nights, to try to get a full night's sleep, but, because how tired he felt all day, last night he didn't take any sleep aids. We went to sleep at 9:00 last night and this morning, he got up at 7:00, feeling fairly well-rested, but not ready to do a marathon.
Tomorrow, we're going to leave early for San Francisco. We'd rather spend time there, either going to a park, or just in the parlor at the Inn, than be stuck on the freeway. Hot August Nights is wrapping up, and there will be people driving over the pass by the thousands, with their trailers. On Monday, we'll be seeing Kristin, as Dr. Minor is out of town. We're hoping she can suggest why Bill is so tired. We upped his Hydro-cortosone and Prednisone last week, to help with that, but we don't want to keep him on such high doses of the steroids.
I didn't call Glenn and Michele about this trip because, although we would enjoy seeing them, Bill isn't up for being sociable. We'll just spend some quiet time.
August 13
The trip went well, except it took us two hours to drive the last 40 miles. We had a wonderful room at the Inn. They are building a private patio on the back of the room and it will have it's own hot tub, so we will be able to use that the next time we get that room.
I had a slight scare this morning. I went over to the parking garage with our suitcase, and got the car. As I was starting up the ramp, a bummy-looking man walked by, looked down the ramp, and turned to walk into the garage. I honked the horn at him, and he stopped to look at me, then kept walking toward me. I wasn't about to let him in, so I drove toward him, honking. He scooted out. I made sure the door was closed before I pulled out onto the street. Then I drove over and parked in a driveway two houses away from the Inn, so I could get Bill and the rest of our stuff. The man came across the street, and stood next to the car on the sidewalk, looking at me. I didn't want to get out of the car, but he wouldn't leave. So, I had to pull out of the only parking spot that was available. I made a u-turn, and pulled into the driveway at the Inn. There isn't enough room to park there, but they allow loading. The man was still back near where I had parked, so I quickly got out, locked the car, and went in to get Bill. I told Lisa about it, and she looked at the security footage, and found him, so she would know who to watch for. We got into the car without any more problems, and then we saw the man across the street, walking toward the Inn.
 |
| Foggy Day |
north
to Highway 37 and then back to I-80. Also, there were no tolls to
pay. The trip was about 10 miles longer, but, even with a stop in
Roseville at Boudins for Rustic Tomato Soup in a Sourdough Bread Bowl,
we were home in five and 1/2 hours. We have decided that we will NEVER
go back via the Bay Bridge again. It is way too stressful.
August 21
Bill has been getting better every day. after going downhill a bit after all the kids left, he started feeling more awake, and the pains in his legs have diminished. He is also able to eat more normally so it is easier to plan meals. We even went out to lunch with Rommie and Kathy, and he had ham, eggs, fried potatoes and gravy. He felt a little icky after, but he enjoyed it so much while he was having it, and the icky went away by the next morning.
We will be going to see Dr. Minor on Sept 4, the day after Labor Day. We'd rather not drive on a holiday, but we do what we have to do, and, maybe Monday won't be too bad going in that direction. We were able to book the inn so that's all taken care of. I'm going to write to Glenn and Michele to see if they want to get together for dinner on the 3rd.
August 30
I guess things have been too calm, so Bill had to do something to shake things up a bit. At 5:30 yesterday evening, he called to me saying he needed help. He had a fist type pain in the middle of his chest, and he had taken his blood pressure to find that it was 170 over 110. His heart rate was 195. I called 911, and tried to keep both of us calm, but he was trembling and moaning so I was very scared. It took a long eight minutes for them to get here, and they did a wonderful job of assessing the situation. By the time they got here, Bill had calmed down a little, the pain was less, and I had hope that he wasn't having a heart attack. The paramedics were amazing, and they stabilized him, which also calmed him down. By the time we headed to the hospital in the ambulance (without lights or siren, darn it) the pain was gone, and he wondered if they shouldn’t just let him stay home and call the doctor in the morning. Wrong answer, Bill!
I road in the ambulance with him, taking along a few things, like his favorite pillow, his glasses and his book, just in case he ended up spending the night. Kathy was already at St. Mary's when the ambulance pulled in at 6:30. The tests showed that he hadn't had a heart attack and a blood clot in his lung was ruled out by a CT scan. It was determined that he had severe pneumonia in both lungs, but the doctor said that it hadn't been there long, less than 12 hours, so he was started on antibiotics. We thought it would just be an over night thing, but he will be staying until Sunday or longer. Kathy took me home a little after 11, and I tried to sleep, but the dogs and I hung out watching TV most of the night.
 |
| The view from Bill's bed |
 |
| His room is huge |
Through blood tests, they found he has "some" heart damage, the extent of which we have yet to find out. He felt good, except for being tired from not getting any sleep, and he ate a good breakfast.
 |
| Breakfast of omelet, oatmeal, and muffin |
 |
| Echo-cardiogram |
So, now we just have to wait. He slept some today, and had a good lunch of manicotti and broccoli. I left him at 2:00 so he can sleep and not worry about me sitting there worrying about
him.
September 1
It has been a rough couple of days. Now, to back up a bit, this is what we have found out...
While
the ER was evaluating him,
they started him on Heparin, a blood thinner. because he is a cancer
patient
immobilized in bed, so he is at risk of developing blood clots. At that
time,
his blood platelet count was 56,000. Normal is 100,000 to 400,000, but,
because of all the drugs he takes, he usually runs low, around 90,000.
He was diagnosed with pneumonia and admitted. In the morning, they said
it appeared he had
some heart problem, too, so he was moved to the cardiac unit. They did
multitudes of tests, in including an
angiogram, which was scheduled for Friday morning at 10:00 am. At the
time of the procedure, they gave him a
high dose of Heparin. At the time of the
angiogram, his platelets were at 8,000, and as soon as that was
discovered, on
Friday morning, they tried to stop the test, but it had been moved up to
8:00
am, so it had already started. After the
angiogram, he had to lie flat for six hours. But, because of the
platelet
problem, that turned into having to lie flat for 24 hours. So, I decided
to
spend the night with him last night. He couldn't even sit up to eat his
meals.
The good news is that his arteries are clear.
For a while, they had no idea what was going on (don’t we
love to hear that from our doctors?) After the angiogram, his platelets had dropped
to 4,000. They immediately (immediately in hospital talk is three hours later) gave
him a transfusion of platelets. Just
before that procedure, one of the doctors came in to let us know that they had determined
he is allergic to Heparin and Warfarin, which they had also given him. The platelets
were being destroyed faster than his body could make them. The doctor said his
condition was life-threatening because any injury could cause him to bleed out,
so he can only get out of bed with someone to walk with him, and he has to be
careful not to bump anything even when he is in the bed. He has bruises all over from where he has
been touched or bumped by something.
One of the hospital staff doctors told us this morning, that the pneumonia is under control, and they would be able to release him except for his low platelets. At 7:00 am, his platelet count was 3,000, down 1,000 from before the transfusion. Dr. Shiff, one of his Reno oncologists, said his body will keep on destroying platelets until all the antibodies caused by the allergy are out of his system. He said the risks of another transfusion would outweigh the benefits, because his body would just “chew them up.” Bill will be out of immediate danger when his platelets are above 10,000, but the doctor will be happy when they go above 20,000. The antibodies can take up to two weeks to be flushed out of his body, so he might be released tomorrow or they might have to keep him for several more days, depending on his platelet recovery.
Today, he felt very good, and he will only be attached to the IV for distribution of the antibiotics for the pneumonia. I left him for a couple of hours to take care of some things at home, and I’ll go back for dinner. When I left, he was sitting up in bed reading, being careful not to get a paper cut when turning the pages.
So many people, family and friends, have been praying and
offering to help in any way, and we appreciate it so much. Tony wanted to fly home to give him his
platelets, thinking that family blood might have better results, but Dr. Shiff
said it wouldn’t be any different.
Platelets are platelets. Other friends have offered to donate. We are very grateful for everyone.
Sept 2
This is just a quick update. He slept well, and is feeling good. His platelets are up to 8,000 this morning, which is finally a step in the right direction. They are going to move him from the cardiac unit to oncology, because he doesn't need to have his heart monitored any longer. Things are looking up!
Sept 3
We spent the day reading, talking, and playing our new word game Quiddler.
Bry and Kathy brought us an Oriental Chicken Salad Wrap from Applebee's for dinner last night. Very yummy.
I left Bill the computer last night because he was feeling
well enough to browse and play games. This morning I got an email from him that
said, "I'm not playing with a full deck." That's all.
I couldn't figure it out. He
called me before I left to come to the hospital, and I said I didn't know what
it meant. He asked how many cards there
are in a deck of cards. "52."
He asked, "How many in half a deck."26..... He said he was half a deck full, or 26.....thousand. His platelets that is. Yeah, it's a feeble attempt at humor, but
what great news.
The doctors said he has
to stay one more night, just to see that they keep going up. He was moved to a room on the oncology floor,
and we wish he had been here all along.
What a difference in the level of care.
He has a nurse, her assistant and her assistant's assistant. See below for our hospital issues.
We're keeping our fingers crossed for tomorrow to be his
going-home day.
They
don't have toast as one of the breakfast choices.
It
wouldn't really matter, anyway, because we have filled out the menus every day
and it seems they bring him whatever they happen to have in the kitchen. When he ordered baked chicken, they brought a
small thigh with skin. Really? In a hospital, they serve chicken with
skin? And a thigh, which had three bites
of edible meat.
The
menu choices don't feature enough variety.
We got used to CPMC, where there are many daily choices and the meals
are appetizing which helps the patient feel more like eating. Why do they offer mashed potatoes as a side
choice when the main course is macaroni and cheese? And when he orders
chocolate pudding, they bring this God-awful exta-sweet orange sherbet.
Two
different nurses have been sniffing throughout their shift. Are they sick or do they have allergies? It makes one worry about what germs they
might be bringing in with them.
There are no nurses permanently assigned to this unit, so everyone rotates. Two nurses have mentioned that they do not have assistants to help with routine things like changing beds. I asked to have his bed changed three times on Sunday because it got wet from perspiration over night, but the nurse was too busy to do it. It was finally done at 4:00 pm.
Should the nurse be asking the patient what meds they were given recently? Or what dose they are taking? Bill is not currently at his mental best, so his answers should not be relied upon. He was asked, "How much Desamethasone are you getting? " and "Did you get your Prednisone the last time I gave you your meds?" Shouldn't her computer be updated as soon as he is given meds? She said she hadn't been able to find the pill, but she didn't remember giving it to him earlier. She left the room and came back a few minutes later, saying, "I found it." Bill took it, but if it had been a narcotic, or something which could be dangerous if given too much, that could certainly be harmful to the patient.
I have been washing him twice daily because he perspires so much from the medications he is taking. No nurse has offered to wash him. Yesterday morning, I asked if he could take a shower, since he was finally able to walk to the bathroom. The nurse said it had to be approved by a doctor. This was at 9:00 am. At 5:30 pm, it still hadn't been approved. This morning, at 8:30, I asked again at the nurse's station, and one of the nurses said, with a definite eye roll, "Well, he'd have to have his IV wrapped, and he's wearing a heart monitor." My response was, "Well, he hasn't had a shower since before he came in here on Wednesday, and he needs one." The nurse sighed and said she would find some Saran Wrap. Twenty minutes later, his nurse brought some wrap into his room, and wrapped his arm. She also brought fresh bed linens and a fresh gown. She then said she would have to check his blood oxygen for five minutes to make sure he could be off the oxygen to take a shower. She removed the oxygen, and put the monitor on his finger. Thirty minutes later, at 9:25, he had to go to the bathroom, so I removed the finger monitor, which sounded an alarm. When he was finished I stopped a passing nurse and asked her to take off his heart monitor so he could shower. She asked if he had permission, and I said he did. She removed the heart monitor but did not turn off the constantly ringing oxygen alarm. I got him showered, dried, dressed, and sitting in a chair before his nurse came back to the room at 9:50. She turned off the alarm for us, and left, without any mention of changing his bed linens. Finally, a 11:05, he was getting tired and wanted a nap, so I changed his bed linens myself. I had to ask at the nurse's station for a top sheet. His nurse came in at 11:30, just as he was falling asleep to wake him up and ask if he needed anything. Well, yes, at that point he needed a nap.
September 2012
To Kathy from Dad –
After getting home from St. Mary’s, I decided to try and put
into words what I experienced while I was there.
This letter is just a
bunch of random thoughts that I would like to get down on paper before they go
away and I don’t have the chance to share them with you.
When they parked the ambulance at St. Mary’s and the first
face I saw outside the back window was yours, I was not at all surprised. You always seem to be right where I need you.
I can always count on you for that.
While I was in St. Mary’s I met Father Art and we had a long, productive
talk about my faith in God, my family and my views of things.
For example, with his help I came to see that the cancer God
had given me was not a punishment, but, rather a means for me to finally see
all the good things in my life and to appreciate them more than I ever have before. It used to be that I went through life just
thinking how lucky I was that everything was going my way. That was not the case. What was really
happening was I was making things go my way by leading a good, clean life and
providing for my family above all else. That has always been the number one
goal for me.
Going way back now; when you were born, and the doctor said
it’s a girl, your Mom and I both said the same thing: you must be wrong – we just know it’s another
boy. They proved us wrong and our lives have never been the same since (thank
you, Lord).
You have made our lives so rich and given us so much there is
no way we could ever repay you.
We now have the best son-in-law and the greatest granddaughters
in the world and anyone who says otherwise will have Mom to deal with. It would
be me, but I know she would love to rip them a new one if you know what I mean.
Between all you do for us and all you do for your family, we
could not be prouder of you.
You, Scott and Tony have been the driving influence in my life
for so many years. My focus throughout
my working years had been to support my family and advance their quality of
life to the best of my ability. It looks like maybe that worked.
Now that Mom and I are able to travel and enjoy the “fruits of
our labor”, we seem to have hit what my doctor calls a “bump in the road” but
that won’t stop us or slow us down if we don’t let it. We plan on living our lives to the fullest we
can and we look to you Scott and Tony as our reasons to continue on.
Again, I thank you for being you and understanding my
condition.
Dad
September 5
Bill was released from the hospital, yesterday, feeling pretty good. He had to have oxygen because his pulse ox kept falling below 90. It was, as always, hard getting him settled, but even more so this time because he really couldn't do anything physical. On the way home from the hospital, we had to go to CVS to drop off his prescriptions, and that is one of the most frustrating things, because they are so inefficient. They always make me wait while they input the new meds, and then they told me that one of the doses was too high, and they would have to check with the doctor. I said they could do whatever they needed to do, but i couldn't wait because my husband was just released from the hospital and was sitting in the car. They asked if 6 or 7 would be alright for pick-up, and I said that he needed them sooner than that. Why does it take four or five hours to get pills into little bottles? What if I had wanted to wait there while they filled the prescriptions?
When
we got home, and got him settled, the oxygen girl came over to bring
him his supply of portable units along with a unit that sits on the
floor pulling oxygen out of the air and diverting it to the patient.
The warning was that if the little light turns yellow, it has stopped
working correctly, and will be putting out carbon monoxide! But that
almost never happens. How comforting. He has a device that he sucks in
on to expand his lungs, and that is supposed to help get rid of any
mucus there might be. That will make him breathe better. We want to
get him off the oxygen as soon as we can.
 |
| Home At Last |
While I did all the running around, Bill helped a lot by making some phone calls and going through the mail.
He
held up until 8:30 and he is still sleeping at 4:30 am. After not
getting a lot of good sleep in the hospital, it's good for him to catch
up.
Today,
we're going to try to get him out walking for a few minutes. I have to
mow the back lawn and do a little trimming on the bushes in the front,
and I want him to go out with me and sit in the shade, to get lots of
fresh air.
September has been a pretty good month, at least, since Bill got out of the hospital. We went to see Dr. Minor on Sept 10 and he was feeling pretty good. His platelets were 50,000, so they had gone down a little bit. Glenn and Michelle couldn't meet us for dinner the night before the doctor visit, but Glenn and his brother-in-law, went out of their way to meet us at Dr. Minor's office after we were finished seeing the doctor. Again, I forgot to get a photo of the Bill and Glen together.
We
drove down to Canyon Country to visit Joline and Bill for four days.
They did so much to make us feel welcome. Poor Bill (hers) had a sore
back so he wasn't able to join us for games,
but we talked a lot and we went to a neat little local restaurant for a
breakfast, so we had a wonderful visit.
They even arranged a bank robbery and a couple of high speed chases for us. Cyndi and Mark, Terri and Keith, and Debbie came over one night for dinner with most of their kids and it was great to see all of them. It seems like we never stopped eating. There was meat roll, pasta, meatballs, sauce, salads, home-made pizza and more. We certainly didn't go away hungry. She even sent food with us when we left for lunch on the road, and meat roll and pasta for dinner that night.
After the trip to see Bill and Joline, Bill (mine, not hers) was just wiped out. It took him several days to get his energy back to a fraction of what it was before the hospital, but he is doing a lot better. Bill had his platelets checked on Sept 19. They were up to 54,000, so at last they are going in the right direction. Our next visit with Dr. Minor is Sept 28, and we hope to find that they are up even more.
September 29
On Thursday, we drove to San Francisco and had a lovely afternoon, playing Phase 10 and Yahtzee while we sipped on some delightful wine. We took ham sandwiches and potato chips, with a side of egg salad and celery for dinner, so we ate in the parlor and then took a relaxing dip in the hot tub.
Friday morning, Bill's appointment was at 10:15, and Dr. Minor said he is still very happy with the progress Bill is making. Hi platelets are up to 76,000, and almost all the bruises are gone. The doctor thinks the skin lesions that have broken out on Bill's back and lower legs is a yeast infection (?) so he got a prescription for that. The colitis is not completely gone, so he still can't go back on the Yervoy. He had a Remicade infusion, which kept us at the office until almost after 1:30. We had made plans to stop at Glenn and Michele's house for a snack, around 1 to 1:30 but once we got on the Bay Bridge, it took almost an hour to get there, so we didn't arrive until after 3:00. We enjoyed our visit very much, and Michele had bought turkey, cheeses, and she had delicious bagels with butter, so we had plenty to eat. I didn't realize how hungry I was until I started eating.
We not only remembered to take the camera, but we actually remembered to take several pictures of all of us, finally!
We aren't sure what time we left, but it was far too soon. We loved talking with them so much. I think it was close to 4:30. The traffic was normal, going 65 for five minutes, and then going 5 for a 20 minutes, then jumping back up to 65, with no obvious reason for the fluctuation. That happened several times. We didn't make any stops on the way home, because I wanted to drive in as little darkness as possible, but we didn't get home until almost 10:30.
I went to the pool today, but Bill is too tired, so he is just doing little honey-doos today.
September 30
Bill had a bit of a setback today. The diarrhea has come back, and he thought he was drinking enough, but from his exhaustion, nausea, and inability to walk from the bathroom to the bedroom, I knew we had to get him on some IV fluids due to severe dehydration. I called his Reno oncologist, who agreed, so we took a little trip over to St. Marys at at 5:00. I had to call Rommie to help me get him to the car, since he couldn't walk. I couldn't take the chance of him falling and breaking something. After three hours of fluids in the ER, he was feeling much better, and joking with the staff, which is always a good sign. Dr. Sullivan said he should spend the night, so they could keep administering fluids, so tomorrow he should be feeling good. I came home before he was given a room, because I had to finish packing and getting the last minute things done for our trip on Tuesday. We're going to overnight in Seattle, and then we'll be Maui bound. WE ARE going to go on the trip!!!!
Oct 1
Bill felt no better in the morning, so that's when I really started to worry that we would have to cancel the trip. We saw the doctor at 9:00 and he said that he thought more fluids would make a difference, so they kept him in all day, stepping up the drip to get even more fluids into him. He also said to cut way down on the milk products because that could be causing the terrible cramping. Well, that was quite a revelation. He has been eating cheese for snacks, pizza, cheese sandwiches, ice cream, and yogurt. We are praying that will make a big difference. He did start to perk up by 11 but guess what they brought him for lunch - a but plate of macaroni and cheese! Luckily, I had gone home and made him a big protein shake and a bagel so he didn't go hungry. His numbers came back from the last blood test at 4:00 and he was released at 4:30. So, we'll be on our way in a few hours. Finally! '
Oct 6
September has been a pretty good month, at least, since Bill got out of the hospital. We went to see Dr. Minor on Sept 10 and he was feeling pretty good. His platelets were 50,000, so they had gone down a little bit. Glenn and Michelle couldn't meet us for dinner the night before the doctor visit, but Glenn and his brother-in-law, went out of their way to meet us at Dr. Minor's office after we were finished seeing the doctor. Again, I forgot to get a photo of the Bill and Glen together.
They even arranged a bank robbery and a couple of high speed chases for us. Cyndi and Mark, Terri and Keith, and Debbie came over one night for dinner with most of their kids and it was great to see all of them. It seems like we never stopped eating. There was meat roll, pasta, meatballs, sauce, salads, home-made pizza and more. We certainly didn't go away hungry. She even sent food with us when we left for lunch on the road, and meat roll and pasta for dinner that night.
After the trip to see Bill and Joline, Bill (mine, not hers) was just wiped out. It took him several days to get his energy back to a fraction of what it was before the hospital, but he is doing a lot better. Bill had his platelets checked on Sept 19. They were up to 54,000, so at last they are going in the right direction. Our next visit with Dr. Minor is Sept 28, and we hope to find that they are up even more.
September 29
On Thursday, we drove to San Francisco and had a lovely afternoon, playing Phase 10 and Yahtzee while we sipped on some delightful wine. We took ham sandwiches and potato chips, with a side of egg salad and celery for dinner, so we ate in the parlor and then took a relaxing dip in the hot tub.
Friday morning, Bill's appointment was at 10:15, and Dr. Minor said he is still very happy with the progress Bill is making. Hi platelets are up to 76,000, and almost all the bruises are gone. The doctor thinks the skin lesions that have broken out on Bill's back and lower legs is a yeast infection (?) so he got a prescription for that. The colitis is not completely gone, so he still can't go back on the Yervoy. He had a Remicade infusion, which kept us at the office until almost after 1:30. We had made plans to stop at Glenn and Michele's house for a snack, around 1 to 1:30 but once we got on the Bay Bridge, it took almost an hour to get there, so we didn't arrive until after 3:00. We enjoyed our visit very much, and Michele had bought turkey, cheeses, and she had delicious bagels with butter, so we had plenty to eat. I didn't realize how hungry I was until I started eating.
We not only remembered to take the camera, but we actually remembered to take several pictures of all of us, finally!
 |
| Catching up on the news |
 |
| The four of us |
We aren't sure what time we left, but it was far too soon. We loved talking with them so much. I think it was close to 4:30. The traffic was normal, going 65 for five minutes, and then going 5 for a 20 minutes, then jumping back up to 65, with no obvious reason for the fluctuation. That happened several times. We didn't make any stops on the way home, because I wanted to drive in as little darkness as possible, but we didn't get home until almost 10:30.
I went to the pool today, but Bill is too tired, so he is just doing little honey-doos today.
September 30
Bill had a bit of a setback today. The diarrhea has come back, and he thought he was drinking enough, but from his exhaustion, nausea, and inability to walk from the bathroom to the bedroom, I knew we had to get him on some IV fluids due to severe dehydration. I called his Reno oncologist, who agreed, so we took a little trip over to St. Marys at at 5:00. I had to call Rommie to help me get him to the car, since he couldn't walk. I couldn't take the chance of him falling and breaking something. After three hours of fluids in the ER, he was feeling much better, and joking with the staff, which is always a good sign. Dr. Sullivan said he should spend the night, so they could keep administering fluids, so tomorrow he should be feeling good. I came home before he was given a room, because I had to finish packing and getting the last minute things done for our trip on Tuesday. We're going to overnight in Seattle, and then we'll be Maui bound. WE ARE going to go on the trip!!!!
Oct 1
Bill felt no better in the morning, so that's when I really started to worry that we would have to cancel the trip. We saw the doctor at 9:00 and he said that he thought more fluids would make a difference, so they kept him in all day, stepping up the drip to get even more fluids into him. He also said to cut way down on the milk products because that could be causing the terrible cramping. Well, that was quite a revelation. He has been eating cheese for snacks, pizza, cheese sandwiches, ice cream, and yogurt. We are praying that will make a big difference. He did start to perk up by 11 but guess what they brought him for lunch - a but plate of macaroni and cheese! Luckily, I had gone home and made him a big protein shake and a bagel so he didn't go hungry. His numbers came back from the last blood test at 4:00 and he was released at 4:30. So, we'll be on our way in a few hours. Finally! '
Oct 6
We
had a good travel day on Tuesday, with a stopover for the night in
Seattle. The one casualty was my toe. I was moving around the
wheelchair to push Bill onto the plane, and I kicked the side of the
wheel with my big toe. It split my nail all the way across and bled
like crazy. When we got onto the plane, one of the flight attendants
brought me three band aids. It didn't hurt much after that.
We
went to dinner at Gregories, which was recommended by the shuttle
driver. It was quite good. Neither of us slept very well, but mostly
that was excitement.
Wednesday
morning, we got to the airport well before our flight and got through
security with no trouble. One of the Hawai'ian staff pushed Bill all
the way to the gate.
Once
we were settled in our seats, we were served a delicious glass of ice
cold POG. The lunch options were not great - appetizers were salmon
pate' or shrimp and scallops salad; main course was duck, mahi, or
vegetable pastries (choose two) and dessert was carrot cake (delicious.)
I enjoyed several Kahulua and creme's and Bill had two cognacs. We had
digi-players, so we both watched two movies and one Big Bang Theory, as
well as listening to some lovely Hawai'ian music.
When
we arrived, Bill was feeling good, although tired. There was a
wheelchair waiting for us. When we got off the elevator heading toward
baggage claim, there were Joe and Gee, waiting for us with fresh leis!
We were so surprised, and happy. I had been fretting about how we were
going to get the three suitcases and three carry-ons to the rental car
shuttle.
Gee
went with me to get the car, and Joe waited with Bill at the luggage
carousel. We
got to the condo around
2:00 and they helped us get organized, and then we thought we'd go to
the pool for the Mai Tai party. We enjoy the music so much, and the
ukelele group plays and sings several traditional Hawai'ian songs. But,
Joe and Gee went over to see if
there were any chairs in the shade, and there weren't, so we ended up
sitting on our lanai, enjoying the music and visiting until 6:30. The had gone to the store on Tuesday to get us
groceries so we had plenty of food in the house, but neither of us wanted any dinner,
and Bill was starting to get cramps, so we went to bed at 7:30, but we didn't
get much sleep because he was up most of the night with diarrhea. Thursday, he felt terrible all day, spending
most of the day between the bathroom, the recliner and the bed. I think the travel days just wore him
out.
We both fell asleep shortly after 8:00 Thursday night. I
woke up at 5 and started working in the kitchen. I woke him at 7:00 and he felt good enough to
go to the pool with me, to read, while I swam with all our friends. We read, and relaxed most of the day. The washer/dryer was delivered around 2:00, so
after that, we walked over to see Joe
and Gee, and that night, they brought
roast, rice, corn and bread over to our place to share with us for dinner. Bill was feeling very good, and he ate a good
amount of dinner. He has been very good
about drinking lots of Gatorade, juice, water, and tea, so I'm sure he's
getting enough liquids. When we did our
first load of laundry, we discovered that the appliance movers broke one of the
valves to the washer so we have scheduled our maintenance man to fix it on
Monday. What a pain. I'm going to call
the moving company to file a complaint, but they probably won't do anything
because I signed off on the job. And I
even gave those guys a tip.
 |
| Not a great look for a lanai |
Today was another good day. Bill even went into the pool for a half hour to exercise with us. I stayed in for another 40 minutes, and then we
read the paper and talked to Carolee.
For breakfast we had a protein
shake, an egg, bacon and toast. We went
up to see some old friends, George and Janet who live two floors up from
us. He broke his back seven months ago,
so they have spent the whole time here, instead of going home to Boston in
April, as they normally do. The
people we gave the washer to came to get it so our lanai is now back to
normal. It is going to a family who needs help, so we're happy we were
able to find them, instead of just having Home Depot haul it off.
We had
leftovers from last night, so that's what we had for lunch. It was as delicious as it was last
night.
 |
| Enjoying the day |
This
afternoon we read and relaxed with a quick time out for me to paint the
area around the new washer, because we had to remove the laundry room
door, and the wall looked icky.
It's Wednesday morning already. We've been here for one week, and we have one week left. Since Bill has been feeling so much better, we've been having a great time, mostly relaxing. We walked down to the beach and found a shark. The artist was still there, so we talked with him for a few minutes. He said his therapist had suggested he do sculpting so he has made it into a hobby.
On Monday morning, after our swim Carolee and I went to the farmer's market to buy some fresh produce, and then we got a movie at the Redbox station in FoodIand. We went back to Carolee's for fresh banana bread, muffins and wine and enjoyed a chick flick. It was very good, but I can't remember the name of it. Only in Maui would I have wine with a movie at 11 am.
While I was out having fun, Bill was stuck at home with our
maintenance man trying to repair our leak.
After four hours and two trips to Ace Hardware, Pat still hadn't
finished, and he had to leave, so we were still unable to do laundry.
After coming home from Carolee's, I made bread, because Gee
had been wanting to have my homemade bread since reading our travel blog. I also made Porcupines, which I probably
haven't made for 30 years. We had found corn on the cob at the farmers market,
so we had a wonderful dinner on the lanai, and then we played our new word
game, Quiddler. We stayed up until way past 10, so we had to whisper on the
lanai because we didn't want security to pay us a visit for noise. They took our entire dirty clothes pile home
with them .
Tuesday, after exercise, we drove into Kahului to go to several
stores. Bill had an idea for how to
close off our old water heater area in order to have a little more
storage. We bought wood, paint and some
trim, and we'll work on it this afternoon.
When we were done with our shopping, we went to Rubies for lunch - they
have delicious salads. Then we drove to
Ho'okipa to see the 20 to 30 foot waves that were caused by a lingering storm
to the north.
Ho'okipa is one of the
places we always go to because it so beautiful.
Usually, we climb down to the bottom, but, mostly out of respect for the
unpredictability of the waves, we chose to stay at the top. The vog has been very heavy this week, so we
couldn't even see the west Maui mountains, or Kahului, but the waves were
fantastic.
Last night, on the way home from Ko'okipa, we stopped at
Kamaole 3 park to watch the sunset. We
took our chairs and set them up in a lovely grassy spot, about 25 minutes
before sunset. Suddenly, both of us jumped up and started slapping our feet and legs. There were ants all over us, and the bottoms
of our chairs. We picked up the chairs
as we ran and slapped at ourselves. I'm
sure it was comical to the people nearby, but we weren't having any fun. We had welt on our feet from the bites. Carolee thinks we got into a nest of fire
ants. We sat at a picnic table far from the ant colony to watch sunset, but it
wasn't much to see due to the vog.
When
we got home, we found that the Weckerlee Laundry Service had delivered
our folded laundry. I'm going to have to let them know that the next
time, they should put it all away for us. After a dinner of popcorn and
iced tea, we sat on the lanai
reading until we couldn't keep our eyes open.
It turned out to be only 8:30. We
thought we'd be acclimated to the time change by now.
Today, we hung around the house and did stuff. I finished painting the hallway. Woo hoo! We finally got the water lines repaired so we can do our own laundry in our beautiful new machine. I went to the Mai Tai party for a little while, when I heard the ukelele group start to play and sing. They are very good, and the guests really seemed to enjoy the entertainment. They also had several different hula dancers.
 |
| Darren has been dancing hula at our parties for several years |
We went to the Tiki Lounge last night with Gee, Joe, Barbara, who we've known for several years, and Heidi, Barbara's daughter-in-law. There was live music and we had a very good time. Despite my reservations, we had pizza, which was too basilly for me, but Bill enjoyed it.
October 11
We exercised extra hard today to make up for having pizza last night.
We met with our friends from Reno, Allen and Valerie for
lunch at the golf course at Waikapu. We
never see them there due to all our busy lives, but we were able to get
together for a lovely lunch overlooking Ma'alaea, Kihei, and Haleakala.
After lunch, we got all our errands done in town. We bought a vacuum, a sheets set to replace
one that was damaged, and stuff to repair the wall that was damaged by the water
repair. When we got home I put the sheets
in the washer, and discovered that the cold and hot water fillers were
reversed, so we now have to hire someone to come out to change them. Bill could do the fix, but I refused to let
him tackle pulling it out from the wall.
We walked over to Joe and Gee's for a drink and to talk for a few minutes, which turned into two hours.They teased him about his shirt. He has had it for at least ten years, and it is falling apart but he loves wearing it.
I had trouble walking home because I've had a nagging pain in my side/stomach/back for several days
We walked over to Joe and Gee's for a drink and to talk for a few minutes, which turned into two hours.They teased him about his shirt. He has had it for at least ten years, and it is falling apart but he loves wearing it.
 |
| Bill's good shirt and Joe wondering where he can get one just like it |
October 12
We started out this morning in the ER at Maui Memorial
today, but for a change, it wasn't Bill who was the patient. I've been having
some stomach pain for several days, and thought I would wait until we get home
to see my doctor, but last night it was so bad that I had to walk bent over, so
we decided we couldn't wait any longer.
He got to see what it's like to be in the chair, and I got to see what it's like to have needles stuck in my arms. After several tests, and some very good pain meds, that had me flying
around the room, there was no diagnosis.
They ruled out appendicitis and infections. It might be a kidney stone or a hernia. I
came home with Vicodin and instructions to go back if it gets worse. I was very
unhappy with that because I wanted them to tell me what is wrong and give me
some antibiotics to fix it.
We got nothing done
at the condo today except for one load of laundry. When we got home from the
hospital at 2:00, Bill prepared a wonderful lunch of grilled cheese sandwiches
on sour dough bread with cucumbers and Bugles. He even cut the peels off the
cucumbers the way I like them. We read
on the lanai until the pain meds made impossible for me to keep my eyes open so
we took a nap until 4:30. The trade
winds came up this afternoon, making the weather perfect. We're going try to take a walk, now and I plan to swim tomorrow morning, as long as I
can walk as far as the pool.
Oct 13
I felt worse this morning, but Bill was having some
bathroom issues, so our friend Gee took me to the ER for some more fun.
After four hours, the results were the same, so we came home and I've
been trying to get by with only Tylenol. I hate being doped up on pain
meds. Bill was feeling good so we had a nice afternoon of reading on the
lanai. The sunset was a good one.
Oct 13
 | |
| Sunset from our lanai |
Oct 15
Bill just couldn't stand for letting me get some of the
attention, so he had to do something dramatic.
Around 1:30 in yesterday afternoon, his heart rate suddenly shot up to
195 -210 so I calmly got him into the car and started driving to the ER. I thought it would get back to normal on the
way, but that didn't happen. When I got him there and out of the car, he
started passing out, so, with me grabbing his arm, holding him up, and trying
to stuff him back into the car so I could get a wheelchair, someone saw what
was happening and rushed a wheelchair over to us. They pushed him past the full waiting room into
triage and started an EKG while I got him checked in.
When I got to the ICU, he
had 7 people working on him. They had
already taken blood, started two IV lines, and given him another EKG. At one point, while I was watching, the doctor walked
away from the table and tripped on some tubes on the floor, and everyone gasped. Later, one of the nurses asked another nurse
what happened to Bill's second IV. The
answer was that it had been ripped out when the doctor tripped. Another time, a nurse tripped as she was
walking away, and ripped off five of the leads for the EKG machine. She quipped, "Well, that's one way to
take them off."
A few minutes later, they gave him a miracle drug that
immediately brought his rate back to normal. Basically, they stopped his heart for two
beats, and got it into the correct rhythm.
He felt perfectly normal after that. They observed him for two hours and
sent him home with a prescription for a
channel blocker so this doesn't happen again.
We were worried that it would happen on the way home. They are going to
release him soon. Dr. suggested a medication that we can keep with us for if it
happens again, especially on the plane. We already had plans to follow up with
his cardiologist.
We got out of the hospital in time to watch the sunset on
the way home. This morning, we went to
the pool as usual. But, it must have
looked funny to anyone watching because I left Bill behind walking slowly,
carrying the pool bag and coffees while I zoomed ahead so I could get to a
chair before the pain started. We had a
nice time visiting with our friends, and the pool felt wonderful, once I got
past the point where I had to walk.
Our friend Carolee took us to the Fairmont Ke Lani for lunch
today. The restaurant is called KO, and it was lovely. What a beautiful setting, and, of
course, I forgot to take any pictures.
Bill did get one of me waiting to be driven to the restaurant in
style.
Lunch was delicious, and the
company was wonderful. Roy and Carol
joined us. They are still
newlyweds. She is 84 and he is 91, and
they recently went to Bora Bora on their honeymoon. He was a minister and he had some fascinating
stories about his adventures traveling all over the world before he and Carol
met.
Oct 22
We had a good trip home, even with the overnight in Seattle. Bill felt very good and he enjoyed the drinks and meals in first class on Hawai'ian Airlines. We still have over 130,000 miles left so we have enough miles for two round trip flights, but we are thinking of using Alaska the next time because it flies out of Reno so there would be no overnight stay anywhere.
Bill had his platelets checked this morning - 124,000, so they are staying up in the normal range even for someone without cancer. Tomorrow he will have scans at St. Mary's and next Monday we till brave the open road for our trip to see Dr. Minor. That's if the weather is good. There is no room at the inn so we will have to go over and come back on the same day.
Oct 25
The last two days have been interesting. Bill is now on his third prescription of channel blockers. The first one made him dizzy, so when we went to see Dr. Shields on Monday morning, he called Dr. Ichino, the cardiac doctor and arranged to have Bill's Nov 7 appointment moved to Tuesday. When we saw that doctor, he changed the medicine to something that wasn't so strong and Bill started taking it on Tuesday night, followed by another dose on Wednesday morning. By noon, he was not only dizzy, but his blood pressure was very low and his heart rate was fluctuating between 38 and 45, which is way too low. The doctor said he didn't need to be seen, but that he shouldn't take that medication any more (duh!) We picked up a different one which he started taking this morning. No more dizzies, and his heart rate is in the 60s where it should be.
My doctor said my pain is caused by my back and I will start physical therapy next week.
October 28
We had a great time with Bailey, Bryanna and Kathy at Virginia City yesterday. Bai and Kathy did a Haunted 5K run, and Bry hung out with us.
 |
| Waiting for the run to start |
 |
| Bryanna and Bill trying to keep warm |
San Francisco tomorrow. Liza, from the Inn, called yesterday and said they had a cancellation so we could stay over tomorrow night as we usually do, but we decided that, since the weather is going to be very good, we can do it in one day. We will start out at 4:30 in the morning, trying to get through Sacramento before the traffic gets unbearable. Then we will drive at leisurely pace, taking the northern route over the Golden Gate Bridge. Our treat on the way home will be a stop at Boudin's in Roseville for dinner. Umm, tomato soup in a sour dough bowl. Can't wait.
October 29
The trip over - left at 4:20 and made wonderful time until we got off Interstate 80 at Highway 37 at 7:40 to head up north so we cold go into the city via the Golden Gate Bridge. From there to the hospital, fewer than 50 miles, took us until 9:50, so our plan of making the trip over and back on the same day, didn't work out as well as we had hoped, because I never sleep well the night before our trip, and the driving exhausts me. We have decided that the next time, we will just go ahead and spend the money for the inn.
The doctor - He walked in and said, "Well, your newest tumor is gone, so you are doing great! Your adrenal gland has shrunk back to normal size and there is no evidence of cancer on the PET scan." Those are the words we've been waiting to hear since the last time he told us that Bill was cancer free. Now, if we can just keep him that way! His steroid doses have been reduced, so he is hoping he will get rid of the puffiness around his face and neck and start to look more like himself again. He will have another Remicade infusion in one month followed by a colonoscopy to make sure his colon is healthy. Dr. Minor intends to put him back on the Yervoy, but only every 3 to 6 months, starting in January, because of Bill's severe pituitary and intestinal reactions. He said that if Bill were to have a treatment now, even though the diarrhea has been gone for several weeks, he would just get it again almost immediately.
Very interesting factoid - Dr. Minor said that sometime between the last brain scan and the one Bill had last Friday, he has had a small stroke! There is some slight artery damage in his brain. It is nothing to worry about as long as his blood pressure stays under control. It went haywire when we were in Maui and he had that SVT problem, where his heart rate went up to over 200. That is probably when the stroke occurred.He is now going to be taking one baby aspirin every day.
We left the office at 11 am and had a fantastic, almost traffic-free trip home, with a stop at Boudin's in Roseville for tomato soup and bread. Delicious!
We are both in our jamies and ready to do nothing for the rest of the day, and it is only 4:40. We are such lazy bums.
November 4
It has been several days since I wrote, because everything has been really good with us. Bill has been feeling very good, although he still gets that dizzy feeling at times. We have noticed that he has been forgetting some things, for instance, he didn't remember that Scott and Jenn and the boys were here in August, until I reminded him about some of the things we did, and then it came back to him. He is also having a little bit of aphasia - he was talking about when we brought out the basket of toys for Carson and Brendan to play with when they were here. The basket was filled with dalmatians, but he couldn't think of that word. It frustrates him but it really doesn't happen very often.
He had go to our doctor to have part of his toenail removed, because it was ingrown. It has been hurting him for a few weeks, and the doctor had put him on antibiotics, but they didn't help. We have had this doctor as our primary but this was the first time we have met him because we both see the nurse practitioner. We really liked him. We just wish his office was in Sparks instead of on the other side of Reno.
We have a pretty quiet month planned, which sounds just wonderful to both of us. Our next San Francisco visit is November 26. I have already made reservations at a hotel on Lombard Street instead of at the inn. We love the personal service we get at the inn, but the hotel will cost us almost $100.00 less for the night and it has a free parking lot.
November 27
The drive to San Francisco was the best one we've ever had. It took just over four hours. The weather was perfect, except for some fog which slowed us down for over 20 miles. It freaked me out a little bit, after seeing on the news, the accident in Texas that they say was caused by fog. There was a 100 car pile-up. They never mention that those kinds of accidents wouldn't happen if everyone would drive with the weather conditions in mind.
Anyway, we had a room at a little motel this time. It saved us $100.00 and it was closer to the hospital, so in the morning, we only had to drive about seven blocks. We walked for about 12 blocks to find lunch, and then another 10 later for dinner. When we stay at the inn, we either have to have dinner delivered, or we have to drive, because it is in a residential neighborhood. We were treated to the deep bass sound foghorns as we drifted off to sleep. I woke up a few hours later and the foghorns had stopped. I wonder if the fog was gone, or if there just are no boats going through the bay at3:00 am.
Dr. Minor said that Bill is doing perfectly. He mentioned that Bill has been a patient for almost two years. What a lot has gone on in that time. We got a prescription injectible testosterone and syringes. We're going to try that, so Bill won't have to always have the smell of the testosterone gel clinging to him. The shots are only once every two weeks. He said to make an appointment with the oncologist here, and have them show me how to give the shot in a muscle. NOT something I am looking forward to, but I got used to giving him the Interferon, so I guess I can learn to do this, too. Our next appointment is January 4. Dr. Minor said that he will probably start back on Yervoy now that the Colitis has cleared up.
The
drive home was equally good, with very light traffic all the way. We
made it in 3 1/2 hours, with only one stop for gas and we got home
before dark.
I think I have a mental block, because I can't remember to take pictures for my blogs.
December 7
Bill's
lower leg has been bothering him for a couple of weeks. When we were
in San Francisco, we walked several blocks, but he used his cane, and he
babied the leg. The last several days, it has been getting worse, and
his foot is hurting so much that he is having trouble walking on it at
all. His upper leg and into his hip started hurting, so finally,
yesterday, I insisted we call the doctor and he was able to be seen
within 1/2 hour. Our GP, Dr. Geni said there were several
possibilities, and there is even a good chance that it is more than one
thing. The possibilities were plantar fachiatis, blood clot, sciatica,
and vascular disease. Now, Bill has had poor circulation in his lower
legs and feet since he's been on Yervoy, so vascular disease sounds very
likely. We took him to Renown Imaging for an ultra sound at 3:35 and
the results were that he has two superficial blood clots. The last time
he had one, in April of 2011, it was deep (DVT), and the tech said
these weren't as serious.
After speaking with Dr. Geni, the imaging person said we were to go
right over to Renown ER. I had already called Dr. Minor, because I had
seen the clot on the ultra sound and I wanted to know what he wanted to
do. Dr. Minor had said that he wanted Dr. Geni to prescribe Pradaxa,
which is the drug Bill was on the last time. So, we were very surprised
that Dr. Geni wanted Bill to go to the hospital. I called him and
explained what Dr. Minor had said, as we were driving to the hospital,
and but Dr. Geni said he didn't think Pradaxa was indicated for Bill,
this time. Rather than argue, we kept on course, and got to Renown at
5:30. We figured the doctors could fight it out after we got there. We
had never been to that ER before, but we figured since Dr. Geni wanted
us to go there, we would give it a try.
So,
we walked in and found a huge, almost empty waiting room. I got Bill
checked in and we sat to wait. After an hour, I asked for a glass of
water, but they didn't have any glasses, so I got a wheelchair and took
him to a fountain so he could have a drink. He isn't supposed to go for
long periods of time without liquids. The staff was incredibly kind,
and very apologetic about the wait, but they kept getting ambulance
patients in, who had been in auto accidents and other traumatic things,
so we understood. At 7:15, an aide asked us if we would like to wait in
the senior waiting area, because the waiting room had filled up with
friends and family of all the trauma patients and it had gotten very
noisy. She wheeled Bill to a small room, and offered us blankets,
because it was very cold. Three other people were in the room, and they
told us they had all been there since just before 6:00, and they were
getting a little tired of waiting, too. At 8:30, I pushed Bill to the
lobby and told them that we were going to go over to St. Mary's, which
is not such a busy hospital. Funny thing was, the nurse told us that
they had just cleared a room and it would be ready as soon as it was
cleaned. We decided to wait, rather than have to start all over at St.
Mary's. Finally, at 8:10, they had cleared a room for Bill, and the aide
took us to it. At 8:30, a nurse came in to tell us the doctor would be
in soon, and Bill had to change into a hospital gown. Dr. Sullivan got
there at 8:40, and said he was surprised we were there because they
don't normally treat lower limb blood clots. I explained about Bill's
history, and he went to call Dr. Minor for instructions. When he came
back a little after 9:00, he said they were going to give Bill Pradaxa,
which we could have had four hours earlier if Dr. Geni had only listened
to us.
He
came back in a few minutes and said that they had decided to monitor
Bill overnight, which really made Bill's night. He just loves trying to
sleep in hospitals. The doctor said they would have a room in a little
while. At 11:00, because I was getting very tired, and Bill insisted, I
went home.
I
got back to the hospital this morning at 8:00. Bill was just having
sausage and French Toast for breakfast. He said he wasn't taken to a
room until 12:30, and his medication wasn't started until almost 3:00.
So he had very little sleep. But, thank God, he had responded to the
medication and they said he could go home. Dr. Rich came in and
explained that they had decided to put Bill on an new drug, Xarelto.
They said it works better. I asked him if he had cleared it with Dr.
Minor. He said he had just sent him a message, but hadn't heard back,
yet. I said I was going to call to make sure it was approved. He
called for me, and spoke to Dr. Minor, finding out that he thought it
would be a good idea to take Xeralto instead. Of course, it took three
hours to get released, but that was because the medication is very
expensive, and they had to get approval from the insurance company.
We
thought all the staff at Renown was wonderful, treating us well, and
offering any assistance they could give to make us comfortable, but that
long wait was intolerable. The next time, we'll go back to good old
St. Mary's. Bill is taking a nap, and I'm going to sit in my recliner
and read until I fall asleep.
