When I last left you, the
new medication, Mekinist, had been approved by the patient assistance program,
and I was waiting for it to arrive. Once
it got processed through the pharmacy (which seemed to take FOREVER), I got it
the next day. It was on Wednesday, March
7. It came by UPS, and I had to sign for
it. It came in a box about 12”x8”. Inside was a same size foam container. Inside that was a bubble-wrapped large pill
bottle. Inside that was a small bottle
with the tiny pink pill. Ahhhh…..FINALLY.
It was about 4:00, and I took it immediately! It is to be taken on an empty stomach, so
that was a perfect time each day.
By this time the entire
left side of my forehead, from my eyebrow to about 2” above my forehead, and
pretty much all of my left cheek had become a deep purple color. Some of my forehead was almost black.
The area on top of my head had begun to drain
and would wake me up at night, grabbing for a tissue. It also had become quite painful in that it ached and was very tender to touch in the
area of drainage. I was certainly not a pretty site. I was feeling pretty desperate, needless to
say. So, I was so thankful to get that
medication – of course not knowing whether it would work or not. I had no idea
when to expect to see results if it did start to work. By March 12, there was a lighter spot
developing in the center of my cheek and my forehead was a tiny bit
lighter.
The skin of my forehead felt
like very thin wrinkled paper. The area on the right side of my face above my
eyebrow was pretty much clear. By last Wednesday,
the change was startling. My forehead
was a medium to light lavender, and my cheek was much lighter.
(Opps, sorry to the squeamish ones!)
The large growth on my cheek, had started
draining, was shrinking slightly in size and drying – not as angry looking as
in the past. Several small spots here
and there have disappeared completely. Monday night a fairly large piece of
dead skin peeled off the top of my head to reveal what appears to be normal
pink skin. Tuesday morning, a bunch more came
off my forehead.
This is all new skin on my forehead and what I looked like when I went to see Dr. Powers. Keep in mind - this is just two weeks on the medication!
The light is not very good here, but there is a lot of pink skin showing here.
This evening the little monster
on my cheek, drained for the 1st time in a long time. That flattened it considerably. I think it is going to have to drain before
it starts any kind of real healing.
I’m continuing to feel
pretty good. I’m having trouble getting
enough fluids down. Last week I had to
have fluids on Friday. I was so weak
feeling and my BP bottomed out. I think
I must have been more dehydrated than I thought. Tuesday, as we were getting ready to go to
OP, I had another weak spell and low BP, so since the infusion center was on
the way, I just got another liter of fluid.
I talked with Dr. Page who was in the office, and he thought I was on
too high of a dosage of BP med, so he cut it in half.
While seeing Dr. Powers in KC, he told me to cut out my BP med for a while
unless I needed it. He would rather have
me on the high side rather than low and falling out somewhere. If it goes over 140/90, I’m to take 5 mg,
rather than the 10 mg. So I guess we
have to work with the BP a bit.
About the only real noticeable
side effect from this Mekinist is the “d” word for the last 4 nights – just about
bedtime, except tonight and it was suppertime.
He said to use Imodium, so I got some of that today. I’d actually feel pretty normal if it were
not for my swollen eyes.
OK, that’s enough on my cancer.
Mark, Amy, and Chris came
on Tuesday, and Jeannine, and the girls came on Tuesday, too. (a week ago) It was spring break for them all. Jeannine didn’t get in until late so Guy took
Mark, Amy, and Chris to the farm that morning.
They had a ball. They rode the
tractor and the UTV all over the south part of the farm – where the tractor is
stored.
Wednesday, Mark was out in
the garage with a friend of his, Shad.
Shad stepped out of the garage and looked to the south. “Hey, that smoke
in the air looks like it’s near your farm.”
The wind was VERY bad that day.
Mark and Shad jumped in Shad’s SUV and drove out to the farm. Mark called back to us and said, “The farm
has burned to the ground!!” He said when
he got there, flames were 20 ft in the air, coming from the barn. WHAT??
We couldn’t believe it!! We all
jumped in our vehicles and headed to the farm.
We could see 4 separate fires burning.
We couldn’t get close to start with because the smoke was too bad.
Emergency vehicles were EVERYWHERE!!
To give you some perspective,
the homestead sits on a paved road 7 miles south of LR. It had the old home house with a mobile home
attached to the front of it. The mobile
home was a 14x70 that we bought after Guy came home from Viet Nam and took a
job managing a feetlot about 1 ½ hours west of here. We put the MH out of the feetlot and that is
where we lived when Mark was born. After
leaving there and moving to Hutch, we gave it to Guy’s parents to put on the
front of their old home to give them a little more room and a nice expansion of
the farm house. It was, at that time, the top of the line MH. It was really
nice. It was a two bedroom, two bath,
with a step-up to the living room. There
was a very large old barn there, built in the 1020s. There were also a garage, a wash house (you
could park a car under, that had a freezer holding popcycles the kids
remember), another garage that held equipment, an old boxcar. There were another small out-building and 3
round metal grain storage bins. There
was a silo by the barn. All burned to
the ground expect the grain bins, the silo and the wind mill. The old home fell into the basement. (Tin from the MH in foreground)
There was an iron stairway and railing that
led up to the MH, and it was still standing.
Here’s a picture of the kids when they were very small, sitting on those
steps. Mark is at the top, and Jeannine
is at this knee in the middle. I’m not
entirely sure who the others are – some cousins, probably.
Three quarters of a mile
to south, down a dirt road is another farm.
This belonged to Guy’s brother, Paul, at one time. It had a two story house, two 100+ year old
rock (smoke) houses, a small barn, a cement milk house, a silo, coral, and
several out buildings. His brother
milked a large number of cows when he lived there many years ago. Several years ago (Paul was not living there,
and the house was being rented), a fire went through there from north to south,
and burned everything but the barn, silo, and the cement/rock houses. The renter escaped but lost everything.
After Guy took the whole
farm over, he rented out the MH to some man that kept a couple mules out there
for a while, but he moved out and got rid of his mules several years ago. He continued to rent the place from us over
the years to store his junk out there –
trucks, a bus, and camper – all old and not running.
He stored all kinds of junk in the barn. We had already taken out anything of value –
mostly memorabilia – many years ago. So
the home place was vacant and generally a mess that Guy dreaded having to clean
up some day. So, in a sense the fire
there was kind of a blessing – other than burning up a lot of memories. The kids took it all pretty hard. When they were growing up, we lived at Hutch,
about 30 mins from the farm, and we went out there every weekend, so they grew
up with such fond memories of time on the farm.
So, anyway, when we all
got out there on Wednesday to try to see what had happened, we detoured around
to try to get to the south farm, because Guy’s beloved old tractor and bush
hog, were stored in that barn. Also, in
the barn, was his nephew’s pickup. Guy
had fence-fixing tools, and misc. tools in there. He had a Conex container a ways in front of
the barn that we stored some things that we didn’t really need at the
house. There was our matching love seat
in there because we didn’t have room in our house for it. He had just taken his UTV out there and put
it in the container for storage.
We were able to get down
that dirt road and up the long driveway.
There were two firetrucks in the driveway we had to drive out
around. When we got into the yard, we
were relieved to see the barn still standing even though the grass was burned
all round. This was about 3:30, and we
did not want to stay around and get in their way, so we left. We tried to catch up with the rest of the
kids who were trying to find us. We were
having to detour way out around now, because the fires were everywhere. Guy talked with one of the fire fighters who
said that because there were so many fires and they were so spread out, it
appeared they were may have been set.
(Since that time, it has been said they are pretty sure they were set.)
By about 6:30, Guy had
talked with another fireman that said the south barn had burn to the ground, so
we headed back out there, and sure enough!
Gone!! Just a pile of tin!! Guy got out and opened the container. The UTV was OK, covered with soot!! Which means that everything else in there is
also covered – including the love seat.
There was a terrible plastic smell, so anything plastic probably
melted. The paint on the end of the
container next to the barn was blistered, so that container got really
hot. Thankfully, the UTV was in the
other end of it.
Nothing was insured. We tried to insure the equipment when we moved here, but they
wouldn’t insure anything unless we lived there.
Saturday, Guy called a man
he had used before to come out and clean up all the metal. Guy gives him the metal for his work of
cleaning it up.
Now we just have to get
the fences fixed before the steers come in May.
Several corner posts are burned out, and several fences were cut by the
fire fighters to let their trucks through.
Thankfully, no other homes were destroyed in the area, although many
came close.
Mark went back to OP on
Saturday, but Jeannine stayed until Sunday.
About a year ago, I was asked to give the program for one of the ladies’
fellowship meetings at our church. As it
turned out, I was the speaker for the spring tea. I was to talk about quilts and show some of
mine. Jeannine really wanted to be here
for that, and the girls were so excited to help. It was going to cause her to get home really
late because she had to leave about 4:30, but she said it would be OK. I had a great time. The Lord just helped me to be strong (while I
was recovering from a sinus infection that week). I suppose the adrenalin was flowing well,
too. I talked just a bit about the
history of quilts and then showed about 50 quilts and tops. I showed the very 1st quilts I had
made (1979) until now.
When it was all
over, and I was starting to fold the quilts and put in my bags, I just ran out
of energy – like a balloon that was untied.
Jeannine had to leave, but several ladies put the quilts into bags and
got them into my car while I just sat!
That’s the most energy I’ve expended since I got sick, I think! One lady in our Bible study told me she
thought that was the best program they had ever had! That made me feel so good. There were lots of visitors there, too. It was a great afternoon. I went home and crashed in my recliner and
slept until Guy called me for supper.
Jeannine and the girls made it home about midnight. She said she drove the 2nd half of
the trip in sleet and snow. Bless her
heart. So glad she made it safely.
Oh, yes. On Saturday, before Mark went home, Amy and
Jeannine packed up the bedroom I thought I was going to use as my quilt room,
and Mark and Guy and Jeannine and Amy got all the quilt fabric and book cases
downstairs to the space I’m going to use for my quilt room. Mark brought in the rest of the boxes from
the garage. He put the boxes marked “quilt”
in the big room, and the rest in the storage room. Bless their hearts! They worked so hard!!! NOW, the work begins for me!! I have to empty the boxes and get everything
organized on the shelves. I’m going to
work a little bit each day. The first
day I got two big boxes emptied. Then we
went to KC. I emptied one box tonight,
but wore out. I’ll go at it again
tomorrow.
I just can’t thank
everyone enough for your prayers! When
we were at the dr’s appointment, the psychologist met with us after the
doctor. She had a bunch of questions to
ask about my support system, my mood, et.c
I told her I had great support group – prayer partners all across the
US; I had a terrific husband that did the cooking and cleaning, and took me
wherever I needed to go; I had a very strong faith, I was very involved in my
church with Bible study and playing my keyboard, and they were all so
supportive; I felt good for the most part; I was a very positive person who did
not let herself stay down – I couldn’t!
She said, “Well…I guess that crosses everything off my check list!!”
I’m still human, and I do
get discouraged now and then, but I pray, listen to my music, read the Word –
you can’t stay down doing that.
If you want to pray for
something specific, pray I’ll tolerate the side effects and that my eyes’
swelling will go down so I can see clearly again. And that this Mekinist is truly working – on the
inside as well as the outside. I want to
really believe this is the answer, but I’ve been up for it so many times, only
to get disappointed each time. I do have
faith, and so many REALLY DO BELIEVE with all their hearts that I will be
healed. Given that this is an incurable cancer,
it would take a divine miracle. At the
moment it does look very promising. I
would love to prove the medical community wrong and make some history – ALL TO
THE GLORY OF GOD!!!!! I would love for
these doctors to see the work of God’s hand before their very eyes!! I would shout from the roof tops for the rest
of my life on earth!! Until then, I’m
just praising God for every healing moment in my life – and there are many of
those along the way. Hey! I’m still here, and I’m still kickin’!!
And as always…….I’m in His
very loving and capable hands…..
