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March 22, 2006
Good Morning!
Yesterday I had another long day
in Medford as it was time for my third appointment with
my new oncologist, and this one began earlier in the
morning. This doctor must be a morning person, and his
appointments begin quite early in the mornings. We had
wondered that there were not many people around there by
three in the afternoon, and they were all winding down
to the end of the day, but they were set up to handle a
lot more people there.
Well, we found them, they are all
there very early. My first appointment, at the lab, was
set up to begin at 8 am originally, but I called to
change that right away, and got it postponed to 9:30 the
next day, as an 8 am appointment would be difficult to
make since it takes me almost 2-1/2 hours to get to
their appointment desk. Since I’m having to use the
oxygen, it takes much longer to get ready, and we
figured we’d have to be up at four or so to make an
appointment at that time.
By taking care of some of it the
previous evening after changing the appointment it
worked out better, and we left here at shortly after 7
am. It had been clear here for several days, but we’d
had some rain the night before, and rain and snow were
predicted. We have a thermometer built into the truck’s
rearview mirror. We had one in the van we had
previously, and living in the places we do, we’ve found
this to be a wonderful feature for us in predicting what
type of weather we’re getting into as we travel. It was
about 39 degrees when we left here, and although cloudy,
except for one short shower didn’t hit any other
moisture until we began climbing to the Siskiyou Summit
at the Oregon border, where it didn’t mess around with
rain, but went right to snow at about the borderline,
but the temp was still at 38 degrees, dropping to 32 at
the summit, but it snowed all the way down to the
Emigrant Lake view on the other side, although nothing
was sticking. There was fog only right at the summit
area, so it was a good trip over the top for this time
of year.
After checking in and having my
work done at the lab it was off to radiology up on the
second floor where I had my X-Ray taken and then picked
up the film and took it back down to the doctor’s office
where we waited for the third time for him to get free.
As we waited for each appointment we each silently
prayed. The entire week prior to these appointments are
difficult, and I find myself slipping toward “the edge”
of I don’t know what as they grow closer. By the time I
begin taking the steroid the day prior to my appointment
I am ripe for the nervousness and jittery feeling the
steroid enhances as a side-effect, and can think of
little else. I’ve been unable to work through that so
far, but feel that this time I am getting a better
handle on it.
We’re also getting a little more
used to the doctor, and he to us. Most people don’t
have a caregiver who attends every appointment and every
test as Jim does, but they allow him everywhere but into
the X-Ray room with me, as they have everywhere in the
three years we have been doing this. As with the other
two oncologists I’ve had, this one is quite different,
and we are all still getting used to each other’s
methods and trying to mesh ways of working, so we can
all get out of our slim appointment times all the
information we want and need. There were a lot more
people there this time, and it was clear that this
department does handle a much larger group of cancer
patients than was apparent at my earlier appointments,
all of which had been later in the day. In each day the
doctor, in addition to the appointments he is handling,
must also visit his patients in the hospital, and follow
up with some critical patients in the infusing room
(where we all receive chemo treatments in one room,
together), woven into those appointment times, so it
gets very busy and hectic on some days, none of which
can be foreseen, but all of which are accepted by those
of us to come later during the day. Many people take
along books, or handwork of some kind, or have a friend
with them whom they can chat with. All in all, however,
four appointments in a row make for a very long day of
it at the hospital, and you tend to run into the same
people running through the process as you move around
through lab, radiology, the doctor’s office, and finally
the infusing room appointment.
The first two appointments are all
in preparation for the doctor’s appointment, where we
are to find out what the results of the previous
treatment has done. We do have some clues, in the way
that my breathing has or has not progressed. Prior to
the first treatment the worsening fluid on my lung had
made noticeable increases in my difficulty breathing.
This last three weeks it did not noticeably get worse
except during the past few days, which could have been
caused by increased congestion after beginning the
steroid. For some reason it has been triggering
allergic reactions, causing runny nose and post-nasal
drip, headaches and increasing congestion and cough,
making it more difficult to breath.
So, we were not sure just what the
results would be, but had been praying fervently that
there would not be any further growth in the tumors, and
hopefully some decrease. However, I was aware that the
extreme difficulty I’ve been having in handling this,
and the resulting increase in stress would have made
that more difficult to achieve. Stress is a very strong
factor in fighting the growth of cancer as it inhibits
your immune system further in fighting it off. This
chemo, when it works is supposed to help that by
preventing the cancer to feed, which causes it to die,
but (and this is supposition on my part) I would think
that the prior growth that had been made would have to
be taken care of by the immune system, because this
chemo only appears to inhibit feeding, and first it has
to stop further growth, which if aggressive, might
inhibit killing off the growth there if the immune
system can’t work properly. So, it’s important that I
get what is needed to improve my immune system. The
proper vitamins and foods needed, enough good sleep, and
exercise, and a reduction of stress, which seriously
affects the immune system’s performance.
The stress also affects the good
sleep. And, the cancer affects the stress, causing a
reduction in appetite, which is also a side effect of
the chemo, making it difficult to eat at times, since
the chemo also causes problems in the mouth, and this
time created some weird effect throughout my colon
resulting in terrific pains and sickness at times,
ultimately causing constipation, but which begins with
terrific indigestion-like pains in just a few minutes
after eating, and all these things combine to really
limit what you can eat, and what you want to eat. I’ve
been supplementing when necessary with a “power-drink”
made of Ensure for protein, ice cream for soothing
relief to mouth and throat, and a lot of fruit, mostly
strawberries, which is all I can get locally right now,
and a couple of kiwi fruit, which we chanced upon. I
just received a full box of kiwi fruit from a friend in
southern California, however, which will enhance those,
as I love kiwi, and the drink is much better with a mix
of kiwi and strawberries.
When Dr. Ahmann came in it was
thankfully to report that there was no increase in the
tumor growth, and a small bit of reduction again, and
that there was NO increase in the fluid surrounding my
lung, which he felt was a very good sign, so he wanted
to go ahead with another treatment.
Oh! Here I need to interject some
other information. I know some of you will think I am
giving too much information, but I ask you to bear with
me. I receive letters from people every month telling
me of the benefits they get from the information I give
about this process, and even if it doesn’t affect you
directly right now, it may be of great help to you in
the future either for yourself, or a loved one. With
new cancer diagnosis encroaching on 2 million people a
year, every bit of information that helps to assimilate,
and deal with all of it is a great benefit, because all
of it is confusing and difficult to deal with when you
can’t get the information you need, to help.
Medicare can be extremely confusing
to people, since it does not pay for everything. Until
right now, no prescription drugs, except in rare cases,
were covered, and other expenses are only covered to 80%
of what they approve. The rest must be covered in a
private “Medigap” policy you choose (or not) to pay for
yourself. Finding one of these is confusing, and can be
expensive if you find one with prescription drug
coverage. We have had one from the time I was covered
under Medicare, however, because I’d already been
diagnosed, and had a great deal of prescription drugs
each month, along with horrendous medical bills for the
20% of coverage that my regular insurance didn’t cover.
Under Medicare, you receive a
statement from them after treatment and their payment
showing what was billed to them, what they paid, and
what you will need to pay if you do not have a Medigap
policy to cover it. It is difficult now to even get a
primary doctor if you have Medicare coverage, as I found
out in La Pine when I tried. The only way you can get
one to take you is to find a new doctor opening an
office, and get in before they are swamped, as they
limit the percentage of Medicare they will take. This
is due to the fact that Medicare pays so little of what
they charge. Sometimes as little as 50% of what they
have billed, and whose fault that is, is too far beyond
me to figure out, but it is creating an impossible
situation for Medicare patients when they cannot get a
primary doctor, and creating an additional burden on
oncologists and other specialists who are having to fill
in for patients who cannot get coverage to handle the
other medical problems they have and that need
attention.
Anyway, many of you will remember
when I was prescribed Aressa, which is essentially this
chemo I am now taking, when it was originally in pill
form. In that form it was not covered under Medicare,
and it took me almost a year to get on a program where
the manufacturer paid for it for me, and then I was
unable to take it. The problem with it was that the
side effects of rash and diarrhea were so severe in some
people that it was impossible to take. They told me it
would kill me to take it so I had to stop.
As a chemotherapy, they have been
able work something out that is easier to take, and
while it is still very strong (hence, the 21 days
between treatments), taking this steroid inhibits the
rash (I’ve had none), and no diarrhea – now constipation
is the culprit. I knew the treatments were probably
expensive, because in the pill form the cost had been
$1,800 a month for 30 pills, which was prohibitive to us
– we simply did not have that kind of money.
Also as a chemotherapy, this Alimta
is covered under Medicare, which covers infused
medications, and just day before yesterday I received
the first notice from Medicare on the payment of my
first chemo treatment. I almost fainted, and for anyone
who is wondering just how much benefit a Medigap policy
can be, this is a very good example. The entire billing
for this treatment was $18,176.00! This included the
Alimta, and some other things injected at the same time
for nausea, Vit. B12, and other things to make it easier
to take, like a flush of the system when it is done, and
the actual giving of the treatment. The Alimta itself
cost was $17,000! And these are all costs incurred
every three weeks while I take it.
Now, of that billing for $17,000,
Medicare approved only $8,259.20, so they paid 80% of
that amount, or $6,607.36, leaving a 20% balance
((1,651.84) for your Medigap policy to pay, or if you do
not have one, for YOU to pay. Your portion for the
entire treatment is $1,743.85 for the entire treatment,
and that doesn’t include the doctor’s visit for the day,
the lab work, and the X-Ray. As you can see, I would be
accruing some impossible to pay expenses without this
Medigap policy, and they are something you will all face
of one kind or another as you age.
So, back to the doctor’s visit.
Here is where this visit became something very special,
unique, and something I have never, ever experienced
before. As we went over the things that had happened in
the past three weeks, when it came to what we had done
to alleviate that attack of indigestion, I couldn’t
remember what we had done to help it at first, and Jim
was blank also… then it came to me – we had prayed! So
I told Dr. Ahmann, and what came next was quite
unusual. He began talking about the power of prayer,
and that led to talking of the faith we appeared to have
and how I should use that to help me. I told him that I
had been very blessed by the Lord, and Jim continued
with telling him briefly about the many people across
the country that have been in contact with us, and how
it had helped them in their own troubles. This was all
unprecedented in any experiences I’ve ever had with a
doctor, and it was clear that he is a devout Christian.
He finished up by reaching out his hand, and asked to be
allowed to pray for me. I held his hand and he gave a
very fervent and heartfelt prayer to the Lord that was
very moving to both Jim and I, and I am unable to
remember a lot of it word for word, but he spent some
time asking for healing and asking Him to remove this
terrible disease from my body, and to keep me close
inside his comforting arms during this time, he said
something that neither of us could remember exactly, but
which the essence of which was asking that He help us to
understand that the ultimate healing may come through
“coming home to Him.” This was said in a very moving
way, and was a concept that I we had not thought of in
just that way, but which had the effect, on me, of
making me think about what would come when He has
determined my time here on earth is over, in a much
better light, and know it was a blessing to have
received this word from the Lord, through this doctor.
This prayer also served to reinforce our knowledge that
we are with the right doctor for us, and that in itself
is a wonderful blessing. And at this point, when there
are so many problems we are facing, and good news is
hard to come by, each blessing we receive has a great
deal more meaning than it would at another time.
The infusing room here at
Providence Hospital is pretty large, with at least 18
stations to hold patients, but they only had two
technicians, or nurses, so there was quite a wait, as
there were 10 patients when we entered. One of them,
who was obviously quite ill, was on the one side of the
room alone for privacy, and Dr. Ahmann was there
attending to him in person. They had placed the others,
including me, on the opposite side of the long nurse’s
island that runs down through the center of the room,
and the large recliners for patients all face that
center. Each is equipped with trays on either side,
holding a well for a drink and having a small TV monitor
attached with an earplug for listening. Music plays in
the background, and on the center island is a tray of
crackers, small candies, etc. Their food and drink
supplies do not compare with what was available in
Alaska, and each visit we remind ourselves to bring
something with us, including something to read, but my
treatment doesn’t last long as some of them did. The
actual treatment takes half an hour or less, but the
wait lasts longer than that, and by that time of the
day, I need some kind of snack or something to tide me
over without getting nauseous. They brought me a few
crackers that were on the tray, and Jim went to the
cafeteria for a Pepsi (he says the food there is not
inviting), and he was already wanting a meal, so came
back without food so we could go to a
restaurant to eat after I finished my chemo treatment.
Normally, if it is not crowded, we
can find a lot to talk about, but we didn’t want to
really disturb a sleeping patient on one side, and
someone trying to watch TV on the other. Finally,
however, the TV watcher caught something from our
conversation, and it turns out he was born in and lived
in Anchorage many years, so we talked to him for quite
some time about Alaska. His wife came in and brought
him a burger and fries for lunch which made is all that
much hungrier, so we were really ready to eat when we
got out of there.
Once I am taking this steroid, it
greatly increases appetite, so everything tastes
wonderful again and I eat the entire three days I take
the steroid. By the time I have the treatment I’m right
in the middle of that time, and I really enjoy the meal
I have on the day of treatment. I forgot about the
stomach thing, however. Last week it hit me for the
second time and it was worse than it had been the
previous bout. I had in addition to the problems in my
stomach a terrific headache, painful sores popping out
in my mouth, and a multitude of pains everywhere and was
extremely miserable. Jim and I, because I was getting
upset by it all, finally began praying and prayed for
some time about it, which helped, and I was able to rest
a bit. Within a couple of hours ALL the symptoms were
gone except for the abdomen pains, and they were greatly
reduced. After that I just was careful about what I
ate, and kept it under control.
Yesterday when we arrived at the
Olive Garden I decided to have soup, salad and garlic
breadsticks to eat. The soup I chose was the last one
I’d had there, it had been just great – potatoes in a
cream sauce, with mild Italian sausage and herbs. This
is where I forgot about the stomach thing, and the soup
yesterday had a great deal more sausage than the first
time, and was a lot spicier this time. It was good,
however, so I ate quite a bit of it, and I totally
demolished the large bowl of great garden salad they
bring you to fill your salad dish as you go. I almost
emptied the large bowl! Their salads are very fresh and
good, and I’ve been trying to eat more veggies, so I
really ate a lot of it.
We drove from there to Office Depot
where Jim had to pick up a software program I need for
this computer, and in just those few minutes I was hit
by terrible pains just at the base of my rib cage. Jim
went in and came right back out, and I was almost unable
to talk by that time, the pains were so severe. I
fished around and found a Rolaid finally, as he went
back inside, which actually brought immediate relief,
which was doubly appreciated, as we really needed to run
several errands while we were in town. Gas is getting
so expensive again here ($2.99 gal. locally, $2.59 in
Medford) that we want to limit our trips to three weeks,
if possible. So far that hasn’t been possible, and we
hoped to remedy that by picking up everything that had
to come from there during that time period.
By the time we had found the most
necessary items it was after 4:30, so we headed home as
it had been raining, and looked like it could get pretty
sticky over the pass, and we didn’t want to get stuck
over there for the night. As we left the sky lifted a
bit, so we lucked out and made it all the way home in
good weather and even some daylight this time. Previous
trips kept us on the road until about 10 pm, but we were
home before 7 this time, which made it easier on both of
us.
I always seem to come away from
these appointments uplifted, especially since there is
no further growth, and a bit of reduction in the cancer,
so I can continue with this chemo treatment. However,
this time I was further uplifted in this appointment by
our discussion, which also addressed some of our
concerns, and had been points of discussion between Jim
and I during that interval. For about two weeks after
my previous treatments, I spent most of my time huddled
in a ball on the couch, sleeping a lot both day and
night in short snatches, or just lying there drifting,
and I noticed that my TV watching had changed from
“how-to” programs to more movies playing endlessly on
our satellite connection.
After two weeks of that, this last
time, Jim asked if we could talk about what and how I
was feeling, so he could know how to help me better, and
my first thought was that I didn’t know how I was
feeling – I really wasn’t “feeling,” I was just
drifting. As I thought about that off and on during the
next two days while he traveled to and from a meeting,
and the day after his return, trying to find what to
talk about, it suddenly occurred to me that I was
“drifting” away from life and reality! Whoa! That
brought me right up off the couch. What was I doing?
Then, I remembered a conversation that Dr. Boone had
with me at the very beginning of treatment, when he said
that “the cancer is going to make you want to just lie
down and give up…” and I realized that while I was not
consciously doing that, I only felt “good” or what I
perceived to be good, when I lay down on the couch,
covered with a blanket, and all the pains and side
effects receded, and sleep or near-sleep overcame me
like a cocoon covering, and I was just existing. I
didn’t have to think about any of these problems, or
hard things to do, or what might be happening…
So, I had a starting place for our
talk. I needed his help, for I have never fallen so
deep into this well of depression that I could not pull myself out,
but each time I came out enough to think of what I
needed to do, something else would go wrong – another
side effect, or problem immediately developed that threw
me back again, right into a huddled ball on the couch,
where it receded, and left me alone, all thoughts
disappearing, and all the things I needed to do fading
from memory immediately. I was losing it!
So we talked about this, and Jim
wanted to be sure we mentioned this to the doctor to
find out if there was something I could take to
alleviate this further, while I felt that it was mostly
(if not all) due to stress, and nerves, and was a
retreat from a reality I did not want to face and deal
with right now.
As we talked about it, the thought
came to both of us at the same time… this hearkened back
to what some of you will be afraid to even hear about, I
feel, but which over time, I have no choice but to
accept that it is true. In my illness I have turned
increasingly more and more to my faith to pull me
through the hard times, and this is the hardest of times
for me right now. From the time of my salvation in
1998, things happened that I didn’t realize had a
correlation to that, but in retrospect, after a couple
of years and of studying the bible, it occurred to me
that each step I made closer to the Lord was countered
by something that immediately happened to me physically,
to try to stop what I was doing. As I thought back, and
eventually even recorded some of these, a pattern
definitely developed, and I discussed it with Jim
finally, since he is so much more learned about
Christianity than I was and am.
I am really quite unlearned, as I
have been ill the entire time since I’ve been a
Christian, and much of that time have had so many
problems with my immune system that I have been
restricted to my home exclusively, except for doctor’s
visits, and have been unable to attend church a great
deal of time, so we are restricted to bible lessons in
the home, and I miss a great deal of learning from the
exposure to a church family on a constant basis.
However, in my studies of the bible, it became clear to
me that this had to be the work of Satan, the devil, or
whatever you want to call him. I feel that you cannot
say he doesn’t exist, for if you believe in God, you
must also believe in Satan, and these are all attempts
at Satan to get me to turn away from God. I do not
think about it a great deal now, and it usually takes me
unaware at a later date, as this did, but there have
been far, far too many things, especially since I spread
the word to so many, and this time I am going to make a
concerted effort to get all this up on my website as
soon as possible, to reinforce the conscious decision to
make sure my position is clear that this only turns me
further toward the Lord at each attempt, it does not
“tempt” me to cease and desist, and never will.
Anyway, when Jim asked the doctor
about this problem of “flooring me” for a period of two
weeks or more, expanding on what I’d said, the doctor
gently reminded him that I have a lot of cancer in that
lung right now, and he must expect me to show some
effects of that, and I was taking all that could be
given to alleviate it. I’ve also had questions from a
number of friends, so you’ll all now know that I’m being
given all that there is to alleviate the side effects of
chemo and the effects of the cancer. The advertisements
you see on television are just that – advertisements,
mostly for over the counter things that are not as
effective as what I’m taking. Remember, this is a very
strong and hefty dose of chemo – it takes a full three
weeks for the effects to wear off enough for you to have
a next dose, because of what it is trying to do. There
are bound to be strong side effects to your body for any
chemicals this strong. Vitamins it destroys must be
replaced, and the effects of rash, nausea and diarrhea
must be strongly controlled, as well as effects on your
blood (which he says is doing well). All of these
medications also have their own side effects, as most
drugs do, so the combination of all these things, along
with the other medications I have to take, all have an
effect on how I feel.
He did agree with me that I was
correct to some extent, and it is impossible to tell how
much – I know my body better, and am the better judge of
how much of this is due to stress. He again encouraged
me to use my faith to combat this to whatever degree was
possible, and that it would be of much help in this.
I was feeling a little
oxygen-deprived, and my blood levels showed this by the
time I visited the doctor, where they checked it, and it
was down to 91, as I don’t use it in the hospital. The
air conditioning there is
generally sufficient to get me by, and it adds about ½
hour to the time there, by the time they find all that’s
needed to get me connected to oxygen
inside the hospital. My tank is on a portable stand,
but since we are all over the hospital, that would be
too difficult for Jim to manage that
in addition to the wheelchair I have to have because I
cannot walk around much without it, so I was without
oxygen most of the day, and then my tank ran out on the
way home, so I just kept the window open, which worked
because it was still in the 50’s as we headed home.
Until I got some more medicine in
me, and breathed some air I couldn’t do much when we
arrived home, so Jim unloaded all the supplies and put
most of them away, and after I sat and breathed for
awhile I puttered around taking care of small things,
trying to keep myself awake so I could possibly sleep
for a longer period when I finally slept. While on the
steroid it is almost impossible to sleep for more than 2
hours at a time, and much of it is in much smaller
increments. One stint of three hours was the longest
I’d ever slept at once, but I needed rest badly, and at
9 pm last night I had to lie down, my eyes simply would
not stay open longer. I lay on the couch, and kept
awake for perhaps half an hour, and then wonder of
wonders, I slept for more than six hours, and did not
wake up until just after 4 this morning! That was very
refreshing, and I felt much better than I’ve been
feeling, so I am really uplifted this morning and ready
to get started with many things.
I finish the steroid this evening,
so tomorrow will be the big test of how much change I
can effect in this pattern, because there is a big
letdown as you come off of it, but I hope to get things
into place better today to help with that, and can make
plans and put things in better order to make it easier
from here on out to effect a more positive change. If I
can start this at the beginning of this period this way,
by the time I go back, we will see if I can make enough
change to effect the results of the chemo in a more
positive manner, so I hope you will all pray for that
for me.
It is very meaningful to me to know
that in some small way I am helping people, and many
people I don’t know, and have no idea how some even come
to know of me, contact me to let me know of changes it
has made in their lives. Of the most importance to me
is to know of the ways in which some of you have been
affected in your walk with the Lord, and some of you
have just become aware that you ARE walking with the
Lord. This knowledge that in some small way the Lord is
using me to reach people is the most powerful blessing
that I’ve received from this battle with cancer, and I
only hope that in some small way I will continue to be
of use to Him in getting His message to people.
If you have been affected in some
way by this, I would appreciate hearing about it. Just
the act of writing these messages is a help to me,
because it always make some things clearer to me, and
that helps. I am also in hopes that it continues to be
helpful to many of you, in your daily lives.
Before I close, I wanted to make
mention that although we are still getting some rain and
a bit of snow now and than, we are seeing some
refreshing signs of spring. On the banks of the
mountainside out my windows here are four or five large
forsythia that have burst into full bloom this last
week, almost the size of small trees, and a couple of
very early bushes that have leaves like Rhododendrons or
azaleas, but the flowers are not the same, so I’m not
sure what they are, and while the forsythia have
weathered the snow and frigid weather well, the blooms
on these two others look a little sick, so they are not
quite as hardy, I guess. Jim reports daffodils out in
front of the garage are starting to bloom, and something
else, so I’ll have to check that out today, also.
Spring is on the way, and we are certainly ready for
it. After living in areas in which spring is so short,
and comes so very late each year, this is wonderful to
have signs of it this early…
Thank you all for helping me,
Marcie
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