MY
STORY PART 2
Click Here - UPDATE - April 17, 2002
Click Here - UPDATE
- May 22, 2002
The Cancer didn't kill me, but will the cure?
After
all of the radiation and chemotherapy they gave me I had
to realize that my battle wounds were not going to fade away. Vitamin E
does help somewhat but it will not take away all those scars, staple marks, skin
flaps and emotional scaring, nothing will. As I stand in front of the mirror, I
think to myself this is not "normal". How can I ever go
to the clothing store that has a common change room or change at a public
swimming pool? They will all look at me and ask "What happened to
YOU"? At this point do I go into detail that I had Vulva Cancer or do
I just make up a quick excuse of what happened? Such as "I had a
fight with a set of GinsuŠ knives and lost". Whoever said "Time heals
all wounds" never had Vulva Cancer. I guarantee that they never had a
vulvectomy. It is the emotional scaring that is the hardest part to
heal.
This is my "normal" folks. Like it, hate it, love it or leave
it, it's ME.
I
looked at my new "normal" as the mark of the beginning of my new life,
with a new perspective and a greater understanding of my own strengths and
determination. Ok, so now I am at the point of healing and getting on with
my new life. Over the last 8 years I have slowly healed my battle scars, to the
point I was starting to think that I just may be getting that control again back
in my life. You loose all of that control when you have cancer, so getting
mine back was a huge triumph for me. I had adjusted my new life around my
illness. Learning that you don't book tickets to a concert many months
away because you have no idea what you will feel like the day of the
concert. Knowing that I can't sit for extended periods, take long walk any
longer, and most of all to make sure that I don't have lapses in my pain
medication. If I do any of these things, I will pay dearly for them for a few
days.
Over
the years we have tried many things to get my pain under control for me to be
comfortable. Dr. Librach at the Toronto Regional Cancer Centre, and all of
the great nurses who work in the pain clinic are fantastic. They have
given me my life back again by controlling my pain. We all know that I will
never be completely out of pain but can be made comfortable to do various daily
living functions. That's right living. I did not fight my way
through cancer to end up not having a life because of pain. All I wanted
was to be able to go out to a movie, a session bingo or see my mother and not
wish every minute that I was there, it was a mistake to come out. Dr. Librach
found that magical amount of morphine to make me comfortable. I was still
in pain but not screaming inside any longer.
We were so close....
We
were so close until Christmas of 2001, when my left leg and foot became purple
then black. In the fall of 2001 the lymphedeama
(swelling) I have in my left leg did not get better when the cooler weather
started and the humidity became less. At that time I was starting to have
a bit of a life again. So when this happened I thought that I was just
paying the price of doing too much. My doctors all thought the same too,
so I was back to living on the couch again.
By the time Christmas rolled around the pain in my left
foot became unbearable, my appointment to see someone about this was not 'till
Jan 3, 2002. By the time of the appointment the toes on my left foot were
purple. When I reached the appointment they immediately took me to the emergency
room within the hospital. It felt like the whole nightmare had started
again. There were 3 doctors hovering over me not really knowing what to
do, they though that I had a blood clot in my leg but were not sure. Once I had
the ct-scan it showed that my main artery in my upper left leg was clogged, also
so were all the tiny veins across the top of my foot. I was scheduled to see a
vascular Doctor in two weeks. I said two weeks!! What am I going to do for two
weeks with this pain and my purple people eater toes? I was so scared that
I was going to loose my toes, they were now turning black. After all this time
from having the cancer this had to happen! How lucky can a girl get!
The two weeks went by like two years, finally the day came that I was going to
get some help. The vascular doctor explained to me that the clogging of my
artery and veins was do to the extreme amount of radiation that I had.
This can happen anywhere from five to fifteen years after radiation I was
told. Why hadn't anyone told me this before now??? I was so
angry. I had been living with this for probably years and no one informed
me to look out for it.
The vascular doctor admitted me right away to the
hospital. I had test after test, they all confirmed the same thing, 80%
clogged artery and veins and a high possibility that I can get a blood clot at
any time. I was then told that there was nothing they can do for me. Time
MAY heal it if I am very lucky but they highly doubt that. And there is a good
chance that it may return. As I was laying in the hospital bed awaiting
for the next step my doctor entered and informed me that I may go home now.
Operating was not an option, because of the radiation they gave to me. It is
also a very difficult operation to clear all of the veins across the top of my
foot. They have to go in for both procedures through my left groin where
the plastic surgery/skin flaps were preformed on me. There are no
guarantees that my groin will heal. I may be worse off if I have the
operation. There is a great chance that the main artery will not clot and I
could bleed to death. So here I am now at home no better than I was before being
admitted to the hospital with no relief in sight.
The radiation that saved my life eight years ago
now may be the cause of my death if a blood clot cannot be removed.
Normally the blood clot would not be so dangerous, but when my leg and foot go
into pain spasms I have no way of knowing whether it is a spasm or a blood
clot, as both symptoms are the same.
As I was laying on my old faithful couch, I thought
that there must be something else I can do. I am not just going to lay
here for the rest of my life.
The next day I contacted the cancer center and
they arranged for me to see a lymphedeama nurse there. She referred me to
the Cookstown Centre For Wellness. At the centre for wellness they have
started to do MLD (manual lymph drainage). It is incredible the amount of
swelling that they have removed from my leg and foot. This should have
been done on me right after I had my lymph nodes removed. They are also
teaching me techniques that I can do on myself to ease the swelling and wrapping
my leg in compression bandages to help ease the swelling. My leg and foot are
still going into spasms but the purple is starting to come out of my toes. This
will take some time, my baby toe was so swollen that the insides of my toe was
literally popping out of the skin. It then decided on its own without my
approval to turn black. How dare it.
I have had my pain medication adjusted to a new
level which is helping allot except for the times it goes into spasm. For
those times I will just keep biting the stick.
So folks, who knows what the future
will bring, but this is my
new "normal" ....
Love it, like it, hate it or leave it, it's ME.
UPDATE -
April 17, 2002
I have now found out
why my baby toe is still so black/red, swollen and very painful, its very very
infected. Actually they say that it has become gangrenous. Yes that is
GANGRENE!! I have been telling them for over 4 months that there is
infection there, but no one would admit to it. I now face a great chance of
loosing my baby toe. I don't think that I am so mad at the thought at
loosing a body part, it is more the thought that no one would listen to
me. I have been to see over 4 different specialists, all the same jargon
from them. "You have clogged arteries from the radiation causing the
blood not to circulate through your toes". Yes that is the truth but
there is infection there also you %#$*@%. I am currently on a high dose of
antibiotics and back to changing dressings 4 times a day, how fun! That sure
beats watching grass grow. We will know in about 14 days if I shall loose
my toe.
Toe updates to follow.
So remember if you
feel in your heart something with your medical care is not right, Speak
UP!!
It is your body your health and your life.
UPDATE
- May 22, 2002
Well folks thanks to
Alexander Fleming's invention of Penicillin my toe will now be saved. The infection
is 95% gone and I can actually wiggle it again. What a feeling! Yes I know
that seems like such a small thing but to me hey it's huge. My pain has gone
down a considerable amount and I am back on the rocky road to recovery
again. I have never minded the bumps in the road it's those hills that I
can do without. My leg will have to keep the compression bandages on it
for life, but if they keep the swelling down and the pain I think it's a small
price to pay.
Have a great Day!
Anne:)
