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December 7, 2006
Hi Everyone – Merry Christmas and Happy Holidays,
I’m sending out this update because I just finished my
first round of chemo treatment yesterday (a 21-day
treatment time) and returned to the doctor today to find
out what, if anything, this treatment had done to the
rapidly growing tumor, and begin on a second regimen of
treatment.
My doctor confided to me today that when he first
recommended this treatment (called Alimta) in January,
it was a bottom-of-the-barrel recommendation, and it’s
strange, because at the time I told Jim that I got the
impression that it was, which was very scary. It was
new, and much was unknown about it. It is one of the
new “targeted” chemos that doesn’t attack your entire
body, just parts of it because it is targeted to do one
specific thing – to kill three enzymes that the cancer
needs to feed upon, thus starving it to death.
He told me today that they are using it instead of
Taxiterre, which was the last one of the old-style chemo
treatments I had; this was in October and November of
2003. This was the harshest chemo treatment for my type
of cancer by far, and it left me very ill, but it
reduced the tumor to a mere wisp of a shadow, which they
thought to be scar tissue; so it succeeded in doing what
was needed. I had been through four or five other
regimens, most consisting of two separate chemos, given
in conjunction with one another. I then had 37
radiation treatments in conjunction with a chemo since
none of the other treatments had any serious effects
against the very stubborn tumor. This began finally to
significantly reduce the tumor size, but they needed
something as serious as possible to finish it off after
the radiation, so Taxiterre was chosen. I had to stop
it before the final three or four rounds, because it was
killing me, but it still did the trick. By this time I
had taken all the conventional treatments there were,
and my body was not in any shape to take more, so it was
a good thing it worked!
The reason they are trying this new Alimta as a
substitute is because of the harshness of Taxiterre, and
the terrific side effects which grow with very single
round of treatment you have. I withstood most of the
other types of chemo quite well when compared with
others I knew, but this one really floored me.
So… that was how I went into the first round of
treatments with Alimta at the beginning of this year,
and I stopped taking it in late June, I believe. It was
about 4 ½ months later before I began again on November
16th of last month. None of us had
any idea if it would work at all again.
I did have one (hopefully) very good sign during this
21-day period. I had been coughing up a great deal of
blood in the last two months from the tumor, as I had
done late in 2005 when it first grew so rapidly. By the
time it gets this large it has displaced room your lungs
need to breathe, and they are both fighting for space in
there, and evidently that’s what causes the bleeding.
During the first regimen of treatment it took the chemo
two months to stop the bleeding.
However, with this single round of treatment last month
I went for my first chemo treatment on a Thursday, and
the next Thursday, Thanksgiving Day, the bleeding
stopped cold! It stopped it in one week exactly. We
thought that was an exceptionally good sign. My
strength and muscle tone have been going downhill all of
this last two months, and the terrible fatigue of
cancer, along with the bad coughing from increased
allergies (another bad sign that the cancer was
growing), kept me pretty inactive, mostly to keep the
coughing down to a minimum. In the last two weeks, I
have been feeling healthier inside and resting better,
another good sign.
I had a lot of trouble with all the side effects common
to this chemo, this time. For this one, the side
effects seem worst at first, and improve as your body
gets used to it and you learn how to mitigate the side
effects as much as possible, in a number of ways.
My mouth was very sore, with large painful bumps all
over, sore gums, and my throat became very dry and sore,
too. For most of the first week I had to be extremely
careful what I ate, and I’ve lost three more pounds from
that first week even though I’ve been eating well since
my mouth improved.
Additionally I had severe nausea again, requiring me to
take Compazine, only eating very small amounts of food
at a time, etc.
My eyes were seriously affected, including swelling,
dryness and burning, constantly leaking tear ducts, and
loss of some eyesight. There is evidently nothing that
they’ve found to help with this, according to the
doctor.
One of the side effects of the steroid I have to take
three days per round of treatment is that it causes
severe nervousness and jittery feelings, and if I get
even slightly cold will go right into shivers and
chills.
It causes severe sleeplessness (only 2-3 hours a night
while I take it), and then I crash for days afterward,
while my body is trying to catch up on it. It is
impossible to stay awake, let alone do anything.
It also gives me quite severe “palsy,” or shaking of my
hands. This increases with each treatment and has
already begun, making it difficult to manage writing
anything by hand. At times in the past I’ve been unable
to even sign my name to anything. This is evidently not
a very common reaction with it, because when I first
developed it with other steroids given with all chemo to
reduce allergic reactions (and I really have to have
that with my allergy background), the doctor said he
didn’t think it was related, it was just “my age, and
was to be expected…” well, this was because they thought
I was dying I guess. Anyway, once I finished chemo, and
the steroids, it took several months, but it gradually
went away. I am already having difficulty in getting
food from my plate to my mouth, and won’t even try corn
or peas without using a spoon. That is very frustrating
for me.
I also began to get the bad constipation that comes with
this chemo, but I was ready for that with my homemade
lemonade, and as I suspected it worked like a charm! I
just have to “up” my amount to keep things running
fairly smoothly.
I had periods of strong metallic taste in my mouth,
which also changes the taste of everything, and makes
much of your food taste like cardboard, so I quickly
shifted to eating anything that pleased my fancy, and if
it tasted reasonably well, and wasn’t bad for me, I ate
it; anything to keep my weight up.
I also discovered, just this last week that I have
something else that I wasn’t aware of. It is called
“Muscle Wasting.” I have been very concerned because
with every bout of inactivity I lose all muscle mass in
my arms and legs, and am left with sagging, limp skin as
wrinkled as the skin of an 80 year old. It is extremely
difficult to build it back up again, and I never fully
succeeded with that until this year. It has grown
progressively worse over the three year period since I
finished that first year (2003) of chemotherapy and
radiation, with every bout of bed rest or little
activity I’ve had to have. Early this year with the
advance of the cancer growth, and my inactivity in the
latter months of 2005 due to my broken ankle, I was
dismayed at my condition. It took an incredible amount
of determination to work through the pain and force
myself to increase activity, since the less you do, the
more painful it is to walk at all, or move your body to
do anything. I also was hampered with fluid on my lung
and the large tumor increasing the difficulty in
breathing I’ve had since the radiation damaged my
bronchial tubes. With any cancer growth it sends my
allergies into wild fits, because it destroys my immune
system, which creates increased congestion, which makes
me cough and makes it even more difficult to breathe
clearly. This further hampers movement and I had to
spend several months on full time oxygen as I worked
through all this, tied to an airline connected to an
oxygen making machine in another part of the house. All
of this is very frustrating, as well as painful and
makes it difficult to do even normal things. I can no
longer get down on the floor because my ankle still
protests too much at trying to rise from it, because my
arthritis is much worse in that ankle now. That means I
cannot get to the back of any lower cabinets and can
reach hardly anything on the bottom shelf. I have
compensated somewhat by using a small office chair on
wheels that allows me to reach more than without it, but
is not quite perfect. I also got one of those far-reach
things, which has a trigger handle to clamp onto
anything light but is useless with anything that can
break or is heavy.
I’m unable to clean floors, I don’t have the breath to
do it, and Jim won’t allow me to even try any longer,
and he insists on doing all the sweeping and vacuuming
because it aggravates my allergies so terribly. As
someone who has always done all her own housework, and
enjoyed most of it, I have found this all very difficult
to accept, but accept it I must, and have found that
allowing frustration to take over only invites
depression in, and then I’m in trouble, so I have made
some attitude adjustments to help with that.
So, after going through all of this early this year,
fighting every single day, all day, to set priorities,
regulate my limited energy to get the most out of it by
interspersing activity with quiet times, I managed to
get myself into the best shape I’ve been in for years.
I gained back my muscles, the wrinkles disappeared for
the most part, and my body felt much better. I could
climb four to six steps just as any normal person again,
I could walk up a slight rise, and my balance was much
better. I felt human again. My normal walk came back.
I felt fluid and limber. Now, in a two-month time, all
that work of six months or so is gone – completely
gone! I have it all to do again. Make that climb way
up out of the valley again to the top of the mountain.
But, on the plus side, I do know that it can be done
with the help of the right diet, nutrition and
exercise. The information I read on this muscle wasting
was pretty grim. Although it was identified more than
100 years ago, little was known about it until recently
when some studies at a university showed that it was not
simply from inactivity, and was seen in more than 50% of
all cancer patients. They even identified that about
37% of all cancer patients died of this, instead of the
cancer! They are beginning to find out more about it
now. Today I asked my doctor what he knew in addition
to what I’d found, since the Internet is not always fast
in getting information online. He said they now know
that steroids are main culprits in causing it, and he
showed me the muscles that are affected. I showed him
my arms, and he agreed that’s what it was. I told him I
had rid myself of the signs of it this spring, but it
came back very quickly with inactivity and the cancer
growth and inactivity of the last two months. We were
interrupted at that point, and didn’t get back to it
again. I don’t think he had any further information on
it, however.
It is something I’ll have to stay on top of, and this
should give me added motivation to fight my way through
the pain to where I can move about easier.
Well, those were the worst of the of the side effects I
had, and they were quite enough because all in all they
lasted until just a few days ago, just before time to
start all over again! I hope to have a better handle on
it this time, and will resist the strong urge to sleep
more forcefully. It’s a difficult thing to do. Every
bit of you is telling you to lie down and rest, since
it’s the only relief you have for the constant pain, but
the doctor says that’s the cancer telling you that, and
you just have to resist it.
We have been praying a whole lot about this, and I want
to thank each and every one of you who has added your
prayers to lift me up also.
I was pretty tense waiting for this appointment day,
afraid that despite the good signs, the results of
today’s tests would show either continued growth, or no
decrease. I have been taken aback several times when I
expected to have a good report, and was very surprised
to find a bad one awaited me, so I never try to
second-guess them now.
My first appt. was for 8:30 and we got in to the X-Ray
at the other hospital quickly this time, we didn’t get
lost, although we did ask for directions when we first
got there, to get to the X-Ray department from the
lobby. This time we didn’t hand carry them, so there
was no waiting for film to print. They are all
digitized and sent them to the doctor via computer.
We left there and went to the doctor’s clinic, where
they drew my blood, and we got in to see the doctor
right after, waiting about half an hour for him in the
room, which is normal. He was very excited when he came
in, because the best he expected was to see growth had
stopped, and didn’t know if we’d see any effect, but
there is a noticeable change in the size. He didn’t
have measurements, but Jim, who saw the film over in
X-Ray said it is quite noticeable, and more of what’s
there is “shadowy” meaning it is not as dense as it
was. The doctor just couldn’t sit still (he has a
broken ankle now!) he was so excited, and then when I
described what had happened with the blood he didn’t
believe me! He said “…NO!” Boy, he was really excited
now, to have such good results so quickly. He is
extremely excited to find that the Alimta can have good
success, and I explained what I was doing to help
alleviate the side effects which can be quite
troublesome. I am now keeping a journal of them which
may help him down the road, and I will give him copies
of them.
He is going to be gone on the date that ends this
treatment period, as it was to be the 28th of
this month, and if we wanted to keep strictly on
schedule, we’d have to see a substitute. We chose to
wait an additional week to see him. Usually a
substitute can do nothing to evaluate things because
they’re not familiar with your case, so we thought it
best to wait, and will pray that an additional week
doesn’t damage whatever momentum has been built up by
the chemo’s regular schedule.
I have had my head in the clouds since leaving there,
and have been deep in communication with my Almighty
God, praising Him and giving thanks for this wonderful
news today. And, we had an absolutely beautiful drive
home through scattered snow coming over the mountains,
and the drive down the canyon was spectacular, as
usual. This drive is so beautiful it is easy to see
God’s hand everywhere you look, at all times of the
year. We always make a leisurely drive of it, because
Jim wants to examine everything until he knows all about
everything he sees. He just loves all of it. He is
also very excited and pleased with today’s report; it
has eased his mind a great deal.
We stopped to gather a bit of ponderosa pine boughs to
add to the front door decoration and a few fresh
decorations I’ll try inside with just a few things that
don’t normally bother me, such as the pine, redwood
branches and cedar. I dearly love these fresh greens in
the house at this holy time, so I’m hoping I’ll be able
to use them. We didn’t decorate last year (2005)
because we were in the middle of moving and in La Pine I
didn’t get to decorate in 2004 because of my tiny
surgery that kept me bedridden the last four months of
the year… so it’s been awhile, and I may have developed
allergies to them, but I’m hoping not. I hope to get
started on all that tomorrow, along with wrapping the
last of the gifts so we can get them sent off on their
way.
Our drive to the post office to mail them is 15 miles
one way – that’s the furthest we’ve ever had to go to do
that, but Jim really doesn’t mind the drive, it’s just
sometimes hard to find the time for these long drives to
anything and everything.
This last month Thanksgiving Day came just a week after
my chemo treatment, so it was quite subdued, but my son
David and granddaughter Callie were here with us, and we
had a very nice visit, and everyone got to do something
special, so we had a good time, Grandma just dropped off
to sleep for a bit now and then when needed. Jim cooked
much of our traditional Thanksgiving dinner so all I had
to do was to help, except for the gravy, which came out
very well, as usual (that’s why he won’t attempt it),
and put together the dessert, which was an easier one
than usual, but was enjoyed by all. I was not,
unfortunately, up to making the pies I normally bake for
each holiday, which is just about the only time I do
them since I’ve been ill. We all look forward to them a
lot, and we missed them.
We will be more fortunate with Christmas, which comes
right at the end of the 21-day period, so many of the
side effects will be wearing off by then if not sooner
(I’m hoping for sooner!), and that should make the
holiday more pleasant for us both. We will have a quiet
dinner for just the two of us, which will be nice,
especially since I’m not feeling too well yet.
We hope all of you have a wonderful Christmas, with
family around you and much cheer and happiness. Please
let us know how you are doing if you can, and keep in
touch at this special time for family and friends. I
won’t be able to send out cards again this year, now
that I’m back on the chemo I won’t be able to write them
out by hand, but so far I can still use the computer,
although I’m making more mistakes, of course.
I’ve been working on more new pages for my website. As
more and more people come to me for information about
help for them with their cancer, it has become difficult
to write it all out in a special message for each, and
the information, some of it, is scattered all over the
place on the computer, so I’ve been putting together a
special section on the website that will hold it all
together in an organized way, and in addition to some
information that was already on the website I’ve
included other helpful information that was in private
files, and have been composing other pages of needed
information for those who are trying to deal with cancer
and/or other life-threatening diseases. I’m almost done
with it, so you can look forward to a notice when it
goes up on the website.
Thank you all for your support, encouragement, help and
expressed concern; you cannot know how much it means to
me to receive it, along with all your prayers and
thoughts. I am so blessed to have such a large and
wonderful group of support to help me through this
ordeal.
Love and Best Holiday Wishes to All of You,
Marcie and Jim
On the Klamath River
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