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Vicki is a regular poster on the Mouth
Cancer Foundation message board. To
chat with her and other cancer patients,
join our online support group here |
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Back Again – Radio Ga-Ga
This time the cancer was toward the back and closer
to the floor of the mouth. I refused surgery.
So we did radiation instead – for 6 weeks,
Monday thru Friday, 45 minutes a day. This was
pure HELL for me! No other word for this –
but hell. They made me a mould of my face, with
a mouthpiece to fit inside my mouth, which did
not fit. I would leave there feeling burnt to
a crisp – I had no energy. It just took
everything I had from me. I couldn’t eat
and was loosing weight too fast. So they inserted
a feeding tube but it ended up going into the
stomach wall in which I ended up getting an infection
in the stomach. I was so sick from this and the
radiation, that I was hospitalized for this. I
lived on Ensure® and Boost®. My tongue
was on fire, also my cheeks and my throat. It
hurt so bad to put anything in my mouth. I could
only eat scrambled eggs and a lot of gravy –
when I did eat that is. I haven't had salt since
cancer. I haven't had a soda or potato chips either.
I had loved chips! When I was through with the
radiation treatment the first thing that I did
was celebrate! I bought myself flowers and I cried
with pure joy.
Oral Care
During this time my mouth hurt so bad that i couldn't
brush my teeth. So the teeth that were once so
pretty were just falling apart on me now. I found
a toothpaste called Biotene, which helped me a
lot. They also have a mouthwash and chewing gum.
It is great stuff! I told my cancer doc about
it, so he started having samples for his patients.
My new dentist made me all kinds of things for
my teeth to help me keep them, and it worked.
I had trays for the top and the bottom and I put
this stuff called GelKam inside them and wore
them for as long as I could. He was the best dentist
I have ever had and will ever have. I was his
first patient with cancer. He has since retired
his practice, which breaks my heart, for when
we do find a great doctor you never want to loose
them. My ENT doc has also been with me since day
one with all this, he is great.
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My Family
We lived in a small town outside of Las Vegas,
so the trip in everyday was exhausting for
me, so I stayed with my daughter, Jamie Lynn,
throughout the week. Honey, Ric, would come
and visit me there but had to go home for
the pets. I would go home on the weekends
with him. I cannot tell you the wear and tear
this took on my family as well as myself.
Illnesses like these do not just affect the
person; it affects every single person that
knows them. My daughter would cry and cry
though she would try so hard for Moma not
to see it . Honey, as well. I don't know what
I would have done without them. My sister
flew out from Oklahoma as well to take the
load off of them for a week. My family lives
back in Oklahoma and I have lived in Nevada
since the first cancer. |
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Getting On
Once I was done with radiation, I wanted my life
back! I went back to work. I worked 20 hours a week,
at first. I was tired, you bet, but I pushed on.
I was soon at my 40 hours a week, still tired but
I pushed on. I took care of my yard and my pool
too. My husband, Ric, was there with me all the
way. He held my hand, wiped my tears, made me laugh,
sang to me, he did whatever he could to make me
smile through all of this. I don't know what I would
have done without him – that is the truth.
Jamie and Shane have grown up now and we are on
our own. So if it had not have been for my honey,
Ric, I would have been all alone. And folks, that
would have been awful! I couldn’t have done
it, not completely alone.
Reunion
CANCER didn’t wait 10 years till the next
time. In 2003, as Ric and I were heading to Oklahoma
(I am a country girl) for our annual family reunion,
I found it! I knew it and I cried. Ric stopped the
truck on a dime and he looked inside my mouth. We
both knew right then and there that it was back;
we cried again. I spent the next 9 days at the reunion
watching and listening to every single thing –
I feared that this would be my last.
Round
Three
We got back to Vegas and that same day Ric and I
went to see my doctor. Doc knew it, and I knew it,
but we didn't say anything. Biopsy again. Yup, it
was carcinoma floor of the mouth. So doc sent us
to California to see if I could have radiation implants.
This is where they put 10-12 needles with little
hoses coming from them into the tumor site, they
shoot the radiation through them. I had ten. I had
the same dosage of radiation as before but this
time in 10 days! Plus they also used hyperthermia
4 times while I was there. This is like micro waving
me from the outside in. That was so painful. It
burnt so bad, the higher the level, they say, the
better chance to kill the cancer. So I took the
highest that I could stand. And a lot of tears.
So here I am burnt again. No salivary glands left
for sure this time. But did this work? No, instead
the cancer moved into my jawbone!. All that pain
for what? Now I had to have the very surgery that
I had turned down 2 times before. I was devastated!
I was exhausted! I was scared! Lord, I don't think
I have ever cried so hard in this lifetime. When
is it going to be over?
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Surgery and Afterwards
So Feb. 2004, I had the very surgery that
I had turned down twice, and this is where
I am today. I had the surgery in California.
They took the bone out of my left leg to rebuild
my jawbone. They also taken a skin graft almost
the length of my upper left leg to rebuild
my neck area and the flap. I remember waking
up and not being able to move my body except
for my right arm, I was terrified –
scared to death. There is never ever going
to be a worse feeling for me than that very
moment when I could not move. I had this trache
(tracheotomy) in my neck; my head weighed
a ton; I could not open my mouth; my leg was
hurting and I had tubes running in and out
of me. Oh, one more thing if this isn't enough,
I cannot talk. So when they wanted me to try
to sit up and I couldn't, they pulled me up!
I couldn’t speak to tell them that it
hurt. I felt a head rush with room spinning
like a Ferris wheel. I was sweating from pure
fear. I have never been nor will ever be a
violent person, but right then and there,
I wanted to slap that nurse! I have never
known anything quite like this before. I remember
praying at that very moment that they had
better not ever do that to me ever again,
I prayed, "Oh my lord, just take me right
now, I want no part of this!" |
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I begged for something to write on. It was only
hours later that they finally got me a pen and some
paper and this was like the second or third day
in intensive care. The night shift staff left a
lot to be desired, they would leave me alone for
hours on end – I was so scared. They would
sit me on the bedpan and then leave. I was so helpless
I couldn't even raise my body to get it out from
underneath me. This is the worst feeling I have
ever known. I have never been in this condition
before. I couldn't roll on my side or sit up. It
was terrible. Nothing more , nothing less, just
terrible.
My husband had gone back to Las Vegas as duty called.
When he returned, he was so angry with them for
just leaving alone like that. He arranged for a
room so that my father-in-law could come over, and
he stayed with me for a week, which was great. He
helped me so much.
I wasn’t about to lay in that bed and feel
sorry for myself, so I would get up and walk myself
everyday. There was a whole lot of discomfort there.
But I got up every morning and washed my hair, which
is still hard for me to do. Just bending my head
over is hard; it is still heavy.
Upon leaving the hospital in California, Doc wouldn't
release me with the trache to drive 5 hours in a
car, so I went into a rehab facility for one month
to work on my leg and my right arm. The nerves were
cut on the right side of my neck where they removed
the lymph nodes, I can hardly raise my arm. It is
extremely hard to put on a blouse. So I can only
hold my arm up about half of what I could before.
They did remove the trache while I was in rehab.
But I had a panic attack, so they put it back in.
I had got a huge ball of mucus stuck and I couldn't
breathe, so they put the trache back in. No one
had told me what to do when it was out. It has been
in since.
This is the third month after the surgery. I am
getting better but it is at a very slow pace. My
leg where the bone was removed and the graft, is
very swollen. I had to get shoes in two different
sizes. I am on liquid morphine, aspirin and Synthyroid®.
I have to crush the pills. My thyroid is dead because
of the radiation. They had to cut it in half just
to put the trache in. It is goiter now. My ears
hurt because of the swelling. I can hardly open
my mouth, though I do try to. My speech and swallow
tech's are on hold for now until some of this swelling
does go down.
During my sickness, Honey had a heart attack at
Christmas 1999. He is doing great, thank the Lord.
His doctor said it was from stress and nerves. My
daughter Jamie has got married to my wonderful son-in-law
Jerry and they have 2 beautiful children, Jesse
(5) and Julia (18m). My son Shane and his fiancée'
have two boys, Kane (6) and Kaden (3.) They all
try to come as much as they can; however, their
lives are busy. It is very hard for the kids for
this has happened 3 times in their young lives.
They lost their real father 2 years ago, so I am
all they have left. They have no grandparents left.
They are so fearful, so afraid, as we all are. I
don't know what to tell them anymore. They have
seen me struggle with this disease; they have seen
all the ups and the downs. I have been blessed to
have a lot of people in my life; they play major
parts in my life. I thank God that I have all the
love that I have had. But the truth is I want more,
I want it all!
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My Wish
I am now at home with my wonderful, loving
husband. And I am still new into this. This
is painful and disfiguring. Not near as bad
as I thought it would be however. I still
have hope for I am alive. I don’t know
what the outcome will be. For now, I am fighting
and trying to keep my head above the water
and my feet on the ground. My father-in-law
stays with me at nights when Ric works, just
in case. I always say, this isn't my first
rodeo with cancer, but I pray my last! I have
had one hell of a ride; I just want it to
end! I have so much love to give; I have so
many things to do but I just don't want this
"C" in my life anymore. It has found
a home in me and evidently it likes it here
but I am ready to move out!!
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I pray that my story will help some of you. I hope
that through all these words you have seen the pain
but also the determination in one person to live,
that is all I want: to live this life my parents
gave to me, to love my wonderful husband, and to
be here for my children and their children. Not
much to ask, is it?
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Vicki is a regular poster on the Mouth
Cancer Foundation message board. To
chat with her and other cancer patients,
join our online support group here |
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