This is about my fight with Cancer. I am not a writer nor will I ever be so please excuse any spelling or grammatical errors. These are my thoughts as they run through my head so at times it mebe a little scattered.
--------------------------------------------------------------------------------------------------------------------------
3/25/13
Dear Cancer,
On October 2, 1999 you decided to enter my life. Ever since then you have been in my thoughts
daily. Not one day goes by without me thinking of you and what you have done to
me.
On 10/11/99 I underwent surgery to have a biopsy, nine days
later they confirmed that I had a rare cancer and only 1 of 10 known cases of
my type of Spindle Cell Sarcoma. There
was a chance that I would lose my right leg and on 10/25/99 I had surgery to remove
the remaining tumor and my Vastest Lateralis (the largest muscle in the leg) in
my right leg. Before this I was a very
avid skier and lived to ski. Having
raced in college and worked as a Ski Patrolman skiing was everything to
me. The doctors told me I should not ski
anymore, but I did. I went through 36
rounds of radiation and 3 months of chemo.
Yes I did lose my hair. Another
side effect of chemo and radiation was that I was now not able to have any more
children. Chemo was extremely
brutal. I lost 18 pounds my first week
on chemo.
As a side not my last baby boy was born 3 days after on
10/28/99. He was the angel I needed to
get through this battle. He would sleep
on me while I went through chemo.
After my first fight with you, life went on but you were
always on my mind. I never was fully able
to ski like I use to and running was difficult.
But, I was alive and living! I
had won but had a lot of battle damage and scars.
Life continued for the next eight years with CT scans. After year eight my Oncologist felt that we
had completely beaten you and that I no longer needed to be scanned.
Life was good. I was
spending time raising my family and living life to the fullest. But you were always on my mind. Every day I woke up feeling my right leg
checking for a tumor and seeing the ugly scar and lack of muscle. To keep my minds off you I got heavily involved
in sports with my kids. Coaching became
a huge part of my life. I wanted to
spend every minute with my family.
In November of 2009 I was putting my Halloween decorations
away and threw my back out. I ended up
in the hospital to get x-rayed. I was
getting ready to go out of town on business and when the doctors read the x-ray
they said my back was fine but it was a little fuzzy and should get a CT scan
when I get back. The following week I
went in for my CT Scan.
Have you ever seen a scary movie when something happens you
see the view of the victim as the camera pans out? Well, that is how I felt when I got a call
from my Oncologist telling me my cancer had returned. My life came crashing down all around
me. Gathered around my children and wife I gave
them the news. That was probably the
hardest thing I ever had to do up until this point in my life. To watch my children’s eyes tear up and see
the look of fear on their face was one of the hardest things I ever went
through.
The cancer was back.
This time it was in my chest and surgery was not going to be easy. The doctors met and discussed my case. They felt that surgery was the best
option. Their thinking was that it took
10 years to come back that it was a slow growing tumor and that radiation and
chemo would not work. Studies were showing
the best way to fight this cancer was by cutting it out. They always told me it was incurable but
beatable. So, on December 27th
2009 I underwent major surgery. I ended
up spending 11 days in the hospital. The
Thoracic Surgeon was the best in the state.
Dr. Collin’s decided in order to get to this tumor they would have to do
a thoracotomy. This is more painful than
having the chest cracked open. They cut
you open from the side and up your back.
The doctor had to break two ribs and remove part of one to get to the
tumor which happened to be about the size of a softball. They also had to remove the upper third of my
right lung. The surgery lasted nine
hours. Recovery was painful and a long
process. But then again like after the
first surgery I was still alive.
I was now free of you again.
It took some time for my body to adjust to having just lost
a third of my lung. It hurt to take deep
breathes and high altitudes bother me and still do to this day. My right side of the chest always has pain
but that reminds me I am alive.
I felt lucky this time since I did not have to go through
radiation or chemo but it also worried me that maybe they were wrong and that
it would help me if I did.
My check up on July of 2010 still showed that I was free and
clear. My next checkup would be in 5
months.
December 2010 I went in for my checkup. I was starting to feel better from the last
surgery.
Do you remember the movie Groundhog Day? I was now living that movie.
The Oncologist was sitting there telling me my cancer was
back! How could this be? I was free and clear just five months
ago! Again I had to go back to my wife
and kids to let them know I had cancer again.
My kids took it hard and my wife I thought was going to break. I told my kids one more time that I only have
two choices. Fight it or not fight
it. God was not to blame. I told them I will fight this to the
end.
The doctors told me this was a slow growing cancer. The doctors told me that this tumor was very
large and that they were possibly thinking about radiation or chemo first to
see if they could get it to shrink first.
They decided against that and felt that surgery should be first.
On December 28th I went back into surgery. This time it was for six hours and they went
through the front of the chest. I spent
another 10 days in the hospital and another News Years Celebration in the
hospital.
The main tumor was the size of a small soccer ball. They also removed two other tumors. The tumors were growing so fast they were out
growing their blood supply and were only 10% alive.
Two months after surgery I prepared for another round of
chemo. I was scared to death having gone
through this before. I did not look
forward to be sick. The good news was
that after 11 years they had made progress on anti-nausea drugs and I did not
get as sick as the first time.
I finished chemo in April of 2012 and I had beat cancer one
more time. The doctors at this point
thought that I should be checked every two months for the rest of my life since
cancer had come back three times now and they wanted to catch it early if and
when it came back.
After beating cancer for the third time I thought maybe I
could get on with my life. I had watched
my kids go through the horror of thinking that their dad may not live. I was proud of how my kids handled this
challenge and they grew stronger because of it.
As for my wife, I had just put her through mental hell again for the
third time. I have never seen someone
pray so hard in my life. She is a very
strong woman, mother and wife. I love
her so much but feel so guilty for putting her through all this.
Along came January 7th 2013. I was sitting in the Oncologist office
waiting for my report from my last CT Scan.
Life came to a screeching halt again! It was back!
How could this be? I
went through Chemo just 8 months ago!! What did I ever do to deserve this? Why me?
What about my family? How is
this fair? Did God forget about me? All
of this came rushing to me. I was
devastated. Did I have the strength to
keep fighting?
The prognostics were not good. I was told the tumor is right next to the
pulmonary artery and that surgery would be too difficult and I would lose the
majority of my right lung. The tumor was
not big but in a bad spot. Also,
radiation was out of the question since if they radiated and another tumor grew
nearby they could not radiate again.
Radiation in this area was dangerous because of the vital organs. The doctors decided that the best option was
to watch and wait.
What the heck were
they thinking? I have a tumor in
me!! GET IT OUT!! I walked out of that appointment with the
feeling it was time to get my life in order.
I felt like I had very little time left on this earth. I was scared, mad and lost! How do you tell your kids that you might not
win the battle this time? Do you tell
your kids that? It was hard enough
telling my wife that and seeing her pain.
I was mad and furious! Why
shouldn’t I be? I had worked so hard to
raise my family. I was not ready. Having to tell my kids again about tore my
heart apart. I hate watching that kind
of pain and fear in their eyes! Collin wanted
to serve a mission at 18 since they change the age. Would I ever see him come home? Would I be there when he came home? Was this going to change his mind and fight
against God? Again I doubted my beliefs
and didn’t know what to do. I prayed
hard and fasted. My family did the
same. My wife and I read the scriptures trying to
find an answer and hopefully a miracle.
A few days later I received a phone call from my Oncologist
telling me of a new trial drug that they were testing at Hunstman Cancer
Center. He asked if I was
interested. You bet I was!! I was not done fighting. I now might have a chance and prayers heard.
So here I sit at Huntsman’s thirty days into the trial. The phase one drug is a new study. I take one pill a day. The possible side effects are rising of blood
pressure but I have not had that issue.
After today I do not have any more long days at Huntsman’s. I get my CT Scan in 30 days to see if the
drug is working. The hope is that it
stops the tumor from growing. They just
had one patient that showed their tumor shrinking and that is exciting
news. I still live on pins and needles
every day and will at least until my next CT Scan.
I have learned a lot in the last 13 plus years fighting this
sickness and I am sure there is a lot more I will learn. Some of what I have learned is:
1.
Cancer does not care who you are.
2.
God and Family is everything!
3.
You only have two choice, fight or give up.
4.
I chose to fight!
3/5/15
Well it has been almost 2 years to the date since I have
added this. Since then Collin has left
for a mission in London and will be home in just over 4 months. So to catch up on what has happened with this
lovely thing called cancer in the past two years.
The trial medication that I was on worked for about six
months at keeping the tumor from not growing.
Just before Collin was to leave for his mission to London I was told by
the doctors that the tumor was growing again and that I was being taken off the
trial. I was scared to death not knowing
what would happen and if I would ever see Collin again. My wife and I decided not to tell Collin
since we did not want him worrying about it as he left for London. We met with Dr. Sharma and he thought since
there was no new tumors and the tree tumors they were watching were still small
that I was a good candidate for radiation at this time. The other option was chemo and I was not
ready for more chemo. We met with Dr.
Kokani who was the radiation specialist.
She felt good about getting the tumors so we decided on that
option. In September of 2013 I went
through 5 rounds of radiation treatment.
I was amazed at the technology and the fact they used a physicist to
engineer the way it the beam would hit the tumors. They used an extremely high dose and was told
that if they grew back in this area they would not be able to ever radiate it
again since it could damage my bones and organs in the area. I did my first CT Scan 2 months after
radiation and the tumors had stopped growing but had not shrunk. I was told that radiation can take up to 8
month plus for the aff3ct to work. The
reason is that the cell DNA is changed when radiated and nothing happens until
they try and split. When they try to
divide and multiply they die since they don’t know what to do because of the
change. So I was told to come back in 2
months. At the 4 month mark the tumors
still had no change but were not growing and that was a good sign. It was about 8 months in when I was scanned
that I was told two of the tumors were no longer there and the other still had
not grown. My CT scans at that point
were spread out to every four months.
Life was starting to turn around and I was trying to get the thought of
the tumors coming back out of my mind.
In November of 2014 I had the best news ever. I was cancer free and the last tumor was
gone!! The radiation worked! Dr. Sharma wanted to push out my scan for 6
months but I was uncomfortable with that with my history so I chose to do it in
four months. That leaves me to
now. On Tuesday March 3, 2015. I went in
for my scans and yesterday I met with Dr. Sharma. The news was not good to say the least. I had developed 4 new tumors in my right
side. The largest being 2cm. Some were in the upper lung and some in the
lower. They were not in the area of the
radiation. So there I sat trying to
fathom what I just heard. It feels like getting
run over by a train but the body is numb.
My wife was there and she had a look of “not again” on her face. Nothing is harder than trying to be strong
and hold your emotions back trying to be string not just for yourself but for
your loved ones. I wanted to scream, yell
swear and hit something, but I sat there trying to hold back, trying to be
strong and trying to be positive. This
is now the fifth time that I have to fight this horrible disease. I start to wonder at time if I still have the
will power to fight, if I have the desire to fight or just give up. I cringe at the thoughts of what I am about
to go through again and same with my family.
Inside I am crying and scared to death.
Fifteen years of fighting this disease has taken a big toll on me both
mentally and physically. But in the end
I know I only have one choice and that is to fight and fight to win. I have always taught my kids that Wilson’s
never quit! It is not in our blood. I know that I will be on my knees a lot these
upcoming months praying for a miracle. I
look around at people I know that are fighting this same disease and they give
me strength watching them how they fight.
They have told me that I have been an example to them in their fight
with cancer. I guess cancer patients
grow a strong bond and rely upon the strengt6hs of others that are fighting
this. I have seen people fight this and
win and people fight and are no longer here on this earth but I know they won
because they never gave up and fought to the end.
A quote I saw the other day really sums it up for me.
“You never know how
strong you are until being strong is the only choice you have.”- Cayla Mills
Being strong is the only
choice. Yes there will be times that I
will break down it is only human. There
will be times I will rely on the strengths of others and especially in Jesus Christ. Hope is what I have along with great family
and friends.
So the next steps are in
deciding on a treatment. I go back on
Monday the 9th to meet with the Doctor to discuss all the
options. He is checking on if I qualify
for a technology that uses sound waves (kind of like Microwaves) for blasting the tumors. I should qualify since you cannot have more
than five tumors and the biggest cannot be larger than 3cm. I have four and the largest is 2cm but it
depends on where they are at. My other
options are more radiation, chemo, a trial drugs with stem cell research (never
used on a sarcoma) and last there is surgery but I really can’t afford to lose
more lung.
I will beat this and will
fight like hell. I have too much life
still to live!
