This all began simply enough. Rommie had been
after Bill to get his ear looked at for months, but this time, at Christmas,
when he mentioned it, Bill touched his ear, and found a tiny lump. Next thing we knew, we had been to three
doctors, and he’d had a biopsy. It’s never
good when your doctor calls and says, “You need to come in to the office to
talk.” That was one of the longest
drives of our lives. So, February, 2009
was when we found out that our lives were changing.
2-12-2009
 |
| Last Look |
I have a simple request and I didn't call you because I
can't talk without getting emotional. I am only writing to a few very
special friends. Bill is having surgery next Thursday to remove a
melanoma on part of his ear and possibly part of his neck. Please send
your prayers his way.
Love, Billie
You are both in my prayers every night and now you will have
honorable mention as well. With those prayers, a positive attitude and
lots of love we know everything will go well. Please do not hesitate to call me
any time of the day or night.
Love, Joline
We will be praying for Bill. Let us know if there
is anything you need.
Love, Louise and Earl
Oh my dear friend....I am here for you with prayers and hugs
and love. I am praying this minute.
If Bill or you want to talk, remember that I had melanoma 9
years ago, and I am still kicking....but it is always in my mind.......It is a
tough thing to hear and very emotionally draining, however, know that prayers
are being said for you both. I will call you this weekend....
love you both, Christie
I
definitely will. Many, many, many people have this, my mother in law included,
so please stay positive, he is a great guy with a wonderful attitude towards
life and this will see him through this. My thoughts and prayers are with you
both, as I know how stressful this is. Please keep us informed and thanks for
letting us know.
Love Leroy
and Pat
Dear Billie:
Please call us as soon as you find out how it went, we are
stunned and both of us are praying for Bill, and want to know details as soon
as you can handle it.
Love, Ennio and Sherry
Oh, Billie, of course you and Bill will be in our
prayers! Actually, you have been in my prayers each morning anyway that
your job searches would be successful! Please keep us posted on Bill's
surgery and if there is anything we can do to help. We miss you guys!!
Love, hugs and prayers,
Donna & Rollie
Sorry to hear this. I want you to know
that you CAN call and it is absolutely OK to be emotional. Might be just
what you need to let go and not be strong as I'm sure you're doing for Bill and
everyone else. Of course we will say prayers for him. Please feel
free to call if you need or want to.
XOXO, Gee
Hi Billie and Bill,
Thanks for letting us know and we will
definitely be including Bill in our prayers. I hope that this is not very
serious for him and that you will keep us posted.
Sorry I do not check my messages every day and
am responding late.
We love you guys! Let us know if you need
anything.
Susie
 |
| Missing A Little Chunk |
 |
| Before |
Fast
forward one year. Just one year after
the surgery, Bill found a lump behind his ear, and everything began all over
again. This time, they couldn’t save his
ear. He was now in stage three which has
a 30 to 70% survival rate.
3-16-2010
Hi Susie,
 |
| After |
Things are definitely
looking up. Sunday afternoon, I stopped all the drugs except for regular
Tylenol. Yesterday, the doctor said that was the right thing to do,
because he had such a bad reaction - probably due to the combination of Xanax, Lunestra,
and Percocet. He prescribed Tramadol for the pain, and we're alternating
between that and Tylenol every four hours. After we got home from the doctor,
Bill rested, finally ate something and was able to focus on a little TV.
It was wonderful to have him back, 'cause it wasn't Bill that was
occupying his body from Saturday at noon to Sunday night. Today, he is joking
and acting completely normal. The only complaint he had about last night
is that his brain is on overdrive, and when he falls asleep, he has weird
dreams.
They took 34 lymph
nodes, all of which were negative (insert BIG CHEER here.) He had 58
staples but she took a few of them out. She removed the packing on his
un-ear, and it really doesn't look too bad. There is an ear shaped
depression, where his new snap-on ear will fit nicely. The only cancer
was on the back of his ear so it's good the ear went bye bye. They said
they got it all (didn't they say that last time?) I saw all the path
reports - PET scan, CAT scan, MRI and biopsies. I believe they really
did. We're going to San Francisco to a melanoma clinic tomorrow for two
consultations to find out what they recommend. His doctors here all agree
that chemo would be an unnecessary trauma for him, because there is no cancer
in there to kill.
I'm doing great now,
just a little tired, because it's kind of like having a new baby in the house -
every time he moves or breathes differently in bed, I wake up. I can take
a little tiredness. We're looking forward to tomorrow. After the clinic,
we'll drive back to Sacramento and stay overnight with friends, with whom we
always have a lot of fun. It will be a good break from what we've been
going though.
Thank you so much for
caring. He is ready for visitors whenever you want to come over. I have a
couple of pictures I can send you.
Love to you both,
Billie
3-17-2010
Gee
In a message dated 3/17/2010 6:06:01 P.M.
Pacific Daylight Time, mauiboss@aol.com writes:
Ready for my rant?
 |
| Not Having a Great Day |
We had a looonnggg night last night. He
feels yucky but isn't in pain. He thinks I'm trying to poison him,
planning to leave him and he hasn't let me out of his sight except when I said
I was going to the bathroom. I finally persuaded him to take a sleeping
pill about two hours ago and go to bed. He has called me on the intercom
on the phone five times, three of them to find out what I'm doing, so neither
of us is really getting any rest. But, at least I can make a sound without him
jumping and asking what that was. Can't wait until we go to the doctor
tomorrow to see if he can get some other meds. I can't imagine why people
use drugs like Percocet and Vicodin recreationally if this is what they do to
them.
On a lighter note, he isn't eating either, and I'm not hungry, so maybe we'll be svelte by Wednesday.
Love,
Billie
4-6-10
 |
| Fitting For an Ear Cover |
We
went to see Travis Humphries, a friend of Kathy's and the son of our
eye doctor. He does prosthetics, and he wanted to see if he could fit
Bill with something that would cover the ear area. He did make
something, but it didn't work out. He didn't charge us anything, so we
figured it was worth a try.
4-15-2010
Zokay!
Actually, it was a
partly good and partly bad day. When he felt good, he was totally
himself. He came up with a new joke. He said I was nibbling on his ear, and
he warned me not to get carried away like I did with the other one.
Bill has had a major
headache that comes and goes, so we were up at 1:00 this morning. He's
already gone to bed with his new narcotic, and I hope it does something for
him. When the headache is there, he is mopey and disagreeable.
 |
| It's Not So Bad |
Tomorrow is the last
day of the first week of his chemo. Yay!!
We are looking
forward to the weekend.
How is Maui?
Duh, wasn't that a dumb question? Maui is wonderful. Wish we were
there. Write when you can and tell me who's there and what's happening
around fantasy resort. I want to know how the pu'u pu'u party goes and
who goes to it.
Love you,
Billie
4-20-2010
Bill is having a dreadful time - headache since
last Tuesday, so weak that he has trouble walking from the house to the car,
disoriented, chills, nausea, depression, insomnia, no appetite, terrible
dreams. Chemo really sucks. He said, on Saturday, that he feels
like he is in a deep pit, and can't climb out. He sees no end to this. It's worse
than having a baby. At least when you put one of those down for the
night, they sleep for more than 20 minutes at a time, and they don't get up, stumble
out to where you are, and scare you half to death, just because they had a
dream about flying remote controls.
We were hoping that he'd have only a couple of
the possible side effects. Instead he seems to have all of them.
Okay, that is my rant for the week.
I know you'll have so much fun, so have fun for
us, too.
Love,
Billie
June, 2010
 |
| He Gets So Exhausted |
Bill
was asked to take part in a Melanoma Study. They said it will help
other people who need encouragement. He's doing it, but I wish someone
would give him some encouragement.
June 30, 2010
Cruising Along
 |
| Just Being Silly |
We
had a wonderful time on the cruise to Mexico with Bryanna and Bailey,
and the drive to Las Vegas to stay with Rollie and Donna. We hope to
take them on another cruise after when Bill is done with the treatments.
Bill
was dragging the whole time, but he did such a great job of hiding it.
He had fun but would have had more fun if he hadn't had to have his
shots which wipe him out.
I did all the driving, but that gave him more opportunity to be silly with the girls on the trip.
7-27-2010
Did Bill tell you about the problem with getting his new
ear? His surgeon arranged for him to go to an oral surgeon to do the
attachment, but our insurance won't cover it because they say it is a dental
procedure. They don't seem to understand that his ear is not in his
mouth. Everything is on hold until we can get some answers.
This is a late start
day, so I had just a little time to write to you. Sorry I have to go now,
to get ready to go to work.
Love to all,
Billie
9-18-2010
Subject: Wow-didn't know anything was wrong
Just finally checked e-mails and face book and
saw the video on Bill. When did this happen? I can't believe you
guys have to deal with another situation....I hope that you find answers soon
and that his condition gets back to normal right away.
Hope you had a fun time with Tony when he was
here. Did you go see the bats?
Talk to you soon and sending my best wishes,
Susie
Susie,
We enjoyed Tony and Anais' visit so much.
We did take them to see the bats. Kathy and Rommie took them to
Sand Harbor for some old fashioned crawdad hunting and playing on the rocks.
Bill didn't feel up to even a partial day on the beach, so we didn't go. During
their visit, he started to go downhill, as far as how he felt physically as
well as his attitude, so the four of us visited his oncologist (we sure do know
how to show people a good time!) He couldn't even sit in the office, had
to lie on the table. She gave him a week of vacation from chemo, from
Tuesday, Sept 7th to Wednesday, Sept 15. She also gave him a steroid to
perk him up. He took it and within one hour, he felt almost normal.
That's the night we went to Mi Casa, so it was really fun. He even
had two sips of Anais' margarita (with doctor permission!!)
He had such a good week, feeling better every
day. He had a brain scan on the 9th, just to rule out brain involvement.
We saw the doctor on the 13th, and he said the scan was perfect. He told
us to start the chemo again, but to go back to half-doses for two weeks.
On Tuesday, he started to have trouble with his tongue feeling thick.
It would come on and then go away a few minutes later. We thought
it might be side effects from the steroid. He had his first shot on
Wednesday night. Thursday, he had paralysis on the right side of his face, so
we spent the day at various doctors, and then went to St. Marys for another
brain scan, because they thought it could be a stroke. He is having
trouble swallowing, and talking. Brain scan was normal. Yesterday, we
went to two doctors. They now think it is Bell's Palsy, which can come on
for no reason, and can go away spontaneously. He is on a different
steroid, and eating a special diet of foods that are easy to swallow.
That's the physical part. The mental part is that he is quick to
fall apart, and he gets upset with me when I try to anticipate what he is
saying so he won't have to finish his sentences, since it is so hard for him to
talk. I'm trying not to do that. I wish we could just have someone throw
some fairy dust on us, that would let us sleep for the next seven months.
 | |||
| Stop and Smell the Roses |
Sorry I didn't call you. I got chastised by Tony because he found out the same way you did. Bill's idea in posting the video was to let people who are following our adventures, know that he is having a problem, but that he is okay. I'm just so tired, and I'm trying to do all the jobs on top of all of this. When I'm not dealing with him, I am either sleeping or watching TV. I'll let you know if we find anything else out.
Love,
Billie
Thank you for the update. I am so sorry
that you both are having to deal with this now and that you are so tired...and
Bill can't talk well. You are in our thoughts and prayers daily.
Please keep us posted. We will be leaving for our California vacation on
10-2 and back in town on the 12th. We will both have our cell phones with
us and can even text now so feel free to call or e-mail.
We are going out tonight for Danielle's birthday
and babysat last night for them. Work has been really busy this week and
I am beat too but other than that all is well over here.
Take care the best you can and keep the
faith. This too shall pass.
Love,
Susie
9-24-2010
Bill has been in the
hospital since Monday, with breathing difficulty, which they've attributed
partly to anxiety. He has BelI's Palsy, which has partially paralyzed the
right side of his face, making it hard to swallow, so he is drinking thick
liquids and eating pudding consistency foods, which are easier to
swallow. They've been doing extensive testing and have found melanoma on
his liver, and probably on his kidney. We don't have a prognosis,
yet. Of course, we are hoping for surgery, chemo and radiation to take it
all away, but we just don't know. We'll see the oncologist, tomorrow, I
hope, and find out as much as we can to pass along. Sorry I didn't call,
but you wouldn't be able to understand what I'm saying, so I chose this way to
tell you. I'm numb. We love you and know that you are sending up constant
prayers for us.
9-29-2010
Aloha Bill and
Billie:
Jarret has Bell's
Palsy too which affects his whole side at times as well as his face. He
attributed it to a herpes cold sore virus. Thank goodness it goes away!
We will keep Bill in
our prayers, and in fact will have our church pray for him. This has been a
week of bad news it seems, with a friend from Oregon losing her daughter to lupus. And Stan Cobb
(an ex-owner who lived in Building Ten) being diagnosed with prostate cancer.
Thanks for keeping us updated, and when you see Bill give him a huge aloha hug
from us.
Aloha
Paul and Kath
Gee,
I just read your email to Bill, and we both appreciate your words very much. We are so fortunate to have you two in our lives. We had a visit from the oncologist a few minutes ago, and we got encouraging news. The kidney has a cyst, and only a cyst. He believes the melanoma on his kidney is operable and can be totally removed. We won't know any more for a few days, and he is going to have more tests done, especially for the palsy, so I will let you know more when we know more.
I can breathe again.
Billie
Subject: Re: Bill
Oh Billie, we are so
sorry to hear this news. We love you guys and are so sorry you are going
thru this. We fully understand if you can't call. Let us know
what the oncologist says. We're sending positive thoughts your way.
Joe and Gee
9-30-2010
Dear Joe and Gee,
Bill is feeling much better, although his swallow is still not all there. We saw his oncologist this afternoon, and he does not have any evidence of cancer in his thyroid. So, we just have to see the surgeon and set a date for the surgery to remove part of his liver. Best news we've had in a while. We love knowing that you are there for us.
Bill is feeling much better, although his swallow is still not all there. We saw his oncologist this afternoon, and he does not have any evidence of cancer in his thyroid. So, we just have to see the surgeon and set a date for the surgery to remove part of his liver. Best news we've had in a while. We love knowing that you are there for us.
Love,
Bill and Billie
10-6-2010
I'm sending this as a mass email, so there are no personal
notes here. We have all kinds of things to do today, but I want to keep
you informed. We went to see Dr. Galanopolous, who is a surgical
oncologist, yesterday. We liked him right away, even before he told us that he
believes he will be able to get all the cancer. Of course, he won't know
for sure until he actually sees inside the liver. There will be a few
tests over the next couple of weeks, so the surgery will be scheduled for the end
of this month or the beginning of next month. Bill will be in the
hospital for 3 to 5 days and his recovery time will be about 6 weeks.
He's going to have a big ole scar so you won't be seeing him on the beach in a
bikini ever again. Oh well, that's a picture you probably would rather
not see, anyway.
We love to hear from everyone, but we know you have busy lives, so don't worry about answering this. We are happy knowing that prayers are being said for him.
Love,
B & B
We love to hear from everyone, but we know you have busy lives, so don't worry about answering this. We are happy knowing that prayers are being said for him.
Love,
B & B
11-6-2010
Aloha,
Saw Pat & Leroy this AM on way to beach. Told them we would bring over sheets and comforter at same time. They were OK with that.
Sorry to hear that Bill isn't doing well with the meds. I can fully understand your dilemma regarding Bill. Now, I'm gonna play mom and quote my mom: If you don't take care of yourself and then you get sick then you'll have two problems -his AND yours and then who's gonna take care of him? Keep rested, eat well, drink lots of water, (and a bourbon here and there), relax when you can. Don't feel guilty about leaving and take advantage of this time when you don't have to be there all the time because he has hospital staff to take care of him. AND let Kathy and others help! Don't try to do it all - reach out.
I'm glad that Tony was able to be there for the operation, but wish he could've stayed longer to help you out. Keep us informed.
Gee
Dear Gee,
Hi, my phone ringer has been off so it wouldn't
bother Bill, and I just found out that the vibrate feature wasn't on, so I
missed a lot of calls. I thought nobody liked me enough to call!
Anyway, I just listened to Joe's voice mail. If you don't mind, why don't
you wait until the comforter arrives to deliver the things to Pat. Only
one trip over there is easier. I really don't care, though. Do
whatever you want to do.
 |
| Getting Out and About |
 |
| Running a Marathon |
Bill is being difficult. He hates the pain
meds 'cause they make him have weird dreams, but he needs more than OTC
stuff. After Tony left this morning, I spent the rest of the day at the
hospital, and he was constantly up and down, wanting to get outa there,
etc. I worked with the nurse to get his medicine changed back from
Dilaudid to morphine, which didn't give him hallucinations. Finally, I
couldn't stand it anymore, and I told him I thought he would get a better rest
without me there. He cried and said he was sorry to be such a
bother. How do you let someone you love know that, yes, you are being a
bother. I don't know whether to be a mom and tell him that he
should just suck it up and concentrate on doing his exercises and trying to
sleep? Or to just hold him and let him get it out. I pray that
I'll go in tomorrow and find that the morphine with Benydryl helped him to get
some sleep.
I'm home now and I'm going to fix some dinner
and try to find a good old movie to watch.
Love,
Me
Stage IV- 7 to 10% chance of five-year
survival
Stage IV melanomas are very hard to cure, as they have
already spread to distant lymph nodes or other areas of the body. Skin
tumors or lymph node metastases causing symptoms can often be removed by
surgery. Metastases in internal organs are sometimes removed, depending on how
many are present, where they are located, and how likely they are to cause
symptoms. Metastases that cause symptoms but cannot be removed surgically may
be treated with radiation, immunotherapy, or chemotherapy.
Ipilimumab (Yervoy), a newer immunotherapy drug, has been
shown to help some people with advanced melanoma live longer. It is just now
coming into use, but some doctors may prefer it over other treatment options,
such as chemotherapy or other types of immunotherapy.
The chemotherapy drugs in use at this time are of limited
value in most people with stage IV melanoma. Dacarbazine (DTIC) and
temozolomide (Temodar) are the ones most often used, either by themselves or
combined with other drugs. Even when chemotherapy can shrink these cancers, the
effect is often only temporary, with an average time of about 3 to 6 months
before the cancer starts growing again. In rare cases they are effective for
longer periods of time, however.
Immunotherapy using interferon or interleukin-2 can help a
small number of patients with stage IV melanoma live longer. Higher doses of
these drugs seem to be more effective, but they also have more severe side
effects.
Some doctors recommend biochemotherapy: a combination of
chemotherapy and either interleukin-2, interferon, or both. For example, some
doctors use interferon with temozolomide. The 2 drugs combined cause more tumor
shrinkage, which may make patients feel better, although the combination has
not been shown to help patients live longer. Another drug combination uses low
doses of interferon, interleukin-2, and temozolomide. Each seems to benefit
some patients. Patients should carefully consider the possible benefits and
side effects of any recommended treatment before starting.
Because stage IV melanoma is very hard to treat with current
therapies, patients may want to think about taking part in a clinical trial.
Clinical trials of new chemotherapy drugs, targeted drugs, new methods of
immunotherapy such as vaccines, and combinations of different types of
treatments may benefit some patients.
Even though the outlook for patients with stage IV melanoma
tends to be poor overall, a small number of patients have responded very well
to treatment or have survived for many years after diagnosis.
11-8-2010
Dear Monique and
Brian,
Okay, things are back
to "normal." Bill had ups and downs while in the
hospital. He had an epidural for the surgery, which they left in after
it. That did a great job of controlling the pain, but his right leg was
still numb 18 hours after surgery. He couldn't move it, which meant that
he couldn't get out of bed. They changed that to morphine, which worked,
except, he wouldn't push the button, so he was in pain. They changed it to
something else, which made him have hallucinations whenever he closed his eyes,
so he couldn't sleep. They put him back on morphine, but made it
automatic, so he wasn't in control of the dose. Saturday night, he was
finally able to get a good sleep on morphine and Benadryl.
I spent the first
night with him, on a cot that I think they picked up at the thrift store after
someone had used it for 47 years. It was so lumpy that I got ten blankets
to put on it, and I still had bruises in the morning from the springs.
Anyway, Tony and Bill made me come home after that so I could get some sleep.
Did you know that hospitals are not quiet places? There are dings, clunks
and constant talking from nurses and visitors. They don't even ask people
to keep the noise down. Bill heard one patient come out of his room and ask the
nurses if there was a block party going on, because it was so noisy.
 |
| Keeping Busy |
Love,
Me
11-20-2010
Dear Craig and Jackie,
Bill continues to improve, feeling good for a
couple of days, then feeling just okay. It's two weeks and three days
post-surgery. His surgical oncologist said he is very pleased with his
progress, and he pronounced him cancer free. Let's hope he stays that
way. There will probably be some chemo coming up, but for now, he can
concentrate on getting better. The only thing the doctor failed to do was
tell us that he would have to modify his diet. Luckily a couple of
friends did let us know, 'cause my brain was not engaged, so I didn't even
think that he might not be able to eat normally. I believe you were one
of the ones who gave us some advice on that. I wish we had heeded
you. Last Tuesday, he felt so well, that he had a burrito for lunch and a
small piece of pizza for dinner followed by a doughnut for dessert.
Duh!! He had a terrible night, and we learned our lesson. We should
both benefit from a different way of eating. We've tossed or given away
most of the things he can't eat. Unfortunately, that means no Christmas
baking will be done at our house. Happy Thanksgiving to you, and we do
hope to see you during the holidays if you happen to be down this way. It
doesn't look as if we will be able to drop in on you, at least for a couple of
months, as my work schedule during the holidays is crazy.
Monday, December 28, 2009, 5:57 PM
Letter to Scott
We had quite the adrenalin rush this morning. We were on the way to Westwood, Calif, about
20 miles west of Susanville, just driving along at about 30, going down an icy hill, minding our own business, when
suddenly a pick-up truck came up the hill from the other direction. It skidded toward us and then corrected,
but he lost control completely and went over the side. If he hadn't corrected, he would have slammed right into
us. It took me a long time to come to a stop (great ABS by the way), (and Dad was already on the phone to 911),
but when I did, I backed up to across from where he was and got out of the car, only to slide on the ice. I
quickly pulled on my boots, and started across when I saw the man climbing up the embankment. From the condition of his truck, it is amazing that he survived, let alone got himself out. We made him get in our car and gave him tissues and baby wipes to help with the bleeding of his
head. While we waited, I called his wife to let her know what had happened. After a few minutes, he wanted to go over to see his truck, so I U-turned to park next to it, and he got out. It was pretty amazing the way he landed between a group of trees. If he had hit one of them, he probably would have been much worse. He was worried about his computer and his master's thesis, so he went down to see if he could get them. When he turned the computer on, it worked fine, so he was pretty happy about that, but not too pleased about his destroyed truck. The police and ambulance arrived and we gave our statement, then went on our way to our job.
Monday, December 28, 2009, 5:57 PM
Letter to Scott
We had quite the adrenalin rush this morning. We were on the way to Westwood, Calif, about
20 miles west of Susanville, just driving along at about 30, going down an icy hill, minding our own business, when
suddenly a pick-up truck came up the hill from the other direction. It skidded toward us and then corrected,
but he lost control completely and went over the side. If he hadn't corrected, he would have slammed right into
us. It took me a long time to come to a stop (great ABS by the way), (and Dad was already on the phone to 911),
but when I did, I backed up to across from where he was and got out of the car, only to slide on the ice. I
quickly pulled on my boots, and started across when I saw the man climbing up the embankment. From the condition of his truck, it is amazing that he survived, let alone got himself out. We made him get in our car and gave him tissues and baby wipes to help with the bleeding of his
head. While we waited, I called his wife to let her know what had happened. After a few minutes, he wanted to go over to see his truck, so I U-turned to park next to it, and he got out. It was pretty amazing the way he landed between a group of trees. If he had hit one of them, he probably would have been much worse. He was worried about his computer and his master's thesis, so he went down to see if he could get them. When he turned the computer on, it worked fine, so he was pretty happy about that, but not too pleased about his destroyed truck. The police and ambulance arrived and we gave our statement, then went on our way to our job.
