About Vulvar Cancer
"A true Story"
Grab a cup of
your favorite drink first before you read.
The information provided herein should not be used for
diagnosis or treatment of any medical condition.
A licensed physician should be consulted for diagnosis and treatment of any and
all medical conditions. We are all different. We all go through
treatment differently. My story is just one of many. It is not to
say that if you are diagnosed with Vulvar Cancer that this will happen to you.
At the start
of a new year things could have not been any better for me.
I was driving to work thinking that I have never felt better, my job and family
were both doing well. This was going to be a great year!
days later about four weeks prior to my 30th birthday I noticed a small bump in
my left groin the size of a nickel. It didn't hurt, it was just
there. I previously have had a history of small cysts here and there so I
didn't take much notice of it. In another week it was the size of a
quarter. That got my attention. So off to the doctor I went.
My family doctor and I thought infection, so he prescribed me some
antibiotics. In another week it had grown quite large and starting to be
very painful while pinching on a nerve. When I returned to my doctor he
sent me for an ultrasound immediately, the results came back with enlarged lymph
nodes. So off for more tests by two other doctors and when those tests
returned I was referred to see my Gynecologist. They made the appointment
on my birthday the 10th of February, hey maybe this was a good sign I
thought. My Gynecologist informed me that I had Vulvar Cancer on my 30th
birthday. I thought Happy Birthday to me, what in the world was this
disease? I had never known anyone to have it.
My gynecologist assured me that just a small amount of surgery
and maybe a little chemo would be all. Little did I know it was going to
be a life altering experience.
Cancer.....so now what?
Within a few
days I was walking into the Toronto-Sunnybrook Regional Cancer Centre feeling in
disbelief. The first part of me had to blame someone or something for this
disease but at the end of the day there were no answers why no one to
blame. A doctor told me that I was a small number of women at my age who
are part of the cancer lottery. I didn't even buy a ticket.
knew it there were 6 doctors converging over me in a little consultation room
(My bathroom was bigger). It felt like I was at trial and this was my
judgment day. Each had their own opinion but at the end of the day their
verdicts were all the same. I was diagnosed with Stage 3 Vulvar Cancer.
The doctors kept shaking their heads saying, "this is bad very
bad". Well when is cancer good I thought? Though for doctors to look
worried that scared me.
I rated them a "0" for bedside manner.
admitted me to the hospital at once. I was thinking this couldn't be
happening, my car was out in the $10.00 a day lot, I can't leave it there?
I don't have a toothbrush, pajamas or teddy. After arguing with them they let me
come home and arrange a ride back by 8:00 that night.
now been sentenced.
weeks in hospital and countless CT-scans and blood tests the decision about my
life was made. By this time the pain was becoming awful. It had been decided
that we should use radiation and chemotherapy first to shrink the cancer enough
to operate. My radiologist informed me that I would hate her by the time I was
through my 42nd radiation treatment. Hate is such a strong word how could I ever
hate her? In the end she was right I did hate her. They then scheduled me to
receive my 4 tattoos for the radiologist to know what area to zap. Hey
butterflies would not be bad but I ended up with 4 dot tattoos. At this
point I realized I was in deep danger, it finally hit me how sick I really
was. But really how bad can 42 radiation treatments be? They were trying
to save my life not kill me right? The fantastic nursing staff at
Sunnybrook Hospital informed me that I would be going twice a day for 21 days to
the radiation chamber to have my abdomen, pelvis, groin, derriere, upper left
leg and vulva areas seared like meat on the grill. I call it the radiation
chamber because once you are laying flat and all lined up in there, all of the
staff run out like there is a fire and leave you there all alone.
first week I thought that this was going to be a piece of cake, was I wrong. By
the 8th day I was not laughing anymore, my groin, derriere and vulva area were
starting to look like a very ripe tomato. On the 12th day my skin
resembled that I had 3rd degree burns, and still 13 more days-26 treatments to
go. My vulva, groin and leg were rare as a piece of steak. At
this point I thought that I can't go on. But somewhere I found the
strength, you would too if it was your life. They then started the chemo
for 7 days/24 hours a day. For the next 13 days I was very heavily sedated on
morphine, dilaudid and sleeping pills around the clock. At the end of the
21 days just breathing hurt. I even feared to have to use the bathroom for
the pain would be so unbearable. I stayed in the hospital for another 3
months to recover from the radiation.
could come home to my couch, as laying in my bed was just too painful.
Without being able to walk it was just more convenient. The fantastic home
care nurses came 2 times day to dress all of my war wounds. It felt so good
to be home. Eating real food again and most of all QUIET.
In July I
was ready to return to the hospital for my surgery. The plan was to
dissect my lymph nodes in each groin and my abdomen. The surgery was a
success for the most part. The only thing we feared was that I would not
heal because of the radiation. My greatest fear became reality weeks after
surgery I had still not totally healed. You see I had this hole in my left
groin the size of a quarter. We could not come up with any use that I
could ever use it for, it was in the wrong place for a change purse. So my
oncologist and I decided that a plastic surgeon should be called in.
Surgery was decided to take muscles from my stomach and reattach them in my
groin. Then perform a skin graft from my bad leg the size of 8 inch long
by 6 inch wide to be placed over my groin and the hole. Needless to say
that this procedure was very very painful (the pain pump is a wonderful piece of
equipment lol). The skin flap was successful and joining the muscles was
fairly successful though when the groin muscles healed they ended up being too
short. I am no longer able to bend down or over to the left very
well. I later found out that you really need those little lymph nodes,
after surgery they had 3 draining pumps hooked in me. They were to take
out the excess fluid that my lymph nodes were no longer processing and the
extensive edema that had built up on me. It never occurred to me what am I
to do once these are removed? I still to this day have a massive
build up of fluid in my left leg and groin. My leg swells up to the point
that it cuts off the circulation and presses on the nerves (double its normal
Ouch is all I can add.
where the muscles were taken from my stomach it left a 9 inch incision down the
middle of me. About a week later the incision decided to become very gangrenous
and no antibiotics were working. I was back in emergency surgery having half of
my abdomen removed by nightfall.
surgery I awoke with a very large hole in my abdomen that had to be stuffed with
52 feet yes feet by 2 inches of gauze and gallons of antiseptic by the wonderful
nurses 3 times a day. I was given extra dilaudid before each dressing on
top of the dilaudid pump though it did not help (dilaudid is 7 times stronger
than morphine). There is no drug they can give you for that amount of pain
to help, no matter what anybody tells you it is complete living hell.
Along with the dressing changes, I had to take 4 yes 4 whirlpool baths a day. It
would include waking me up at 4am for the first. At the start of these I
thought that it was like going to the spa. It only took a few days of
being lowered into the tub like a whale that I developed a prune like body and
the novelty wore off. But let me tell you the whirlpool baths work.
Not only did they start to heal me they were therapeutic also. If anything
they got me out for awhile from a bed that I was confined to constantly.
Sweet Home (Again)
I stayed in
the hospital for months after that to heal only a small amount. I finally came
home on October 31st to celebrate Halloween. Trick or treat. I was
actually crawling into my living room, as walking was not a function that I had
mastered yet. Aside from that fact it was my living room my couch
not some rotten hospital room it was great to be home sweet home.
nurses were back to coming 3 times day to pack my abdomen. They were
fantastic realizing that I went to hell and back each dressing change they would
phone ahead when they were coming so I could take my extra pain
medication. They gave me the greatest care anyone could ask for most of
all they did not take any of my dignity away.
The Victorian Order of Nurses (VON) is an extraordinary group of nurses.
My hat goes off to them all.
I must have
looked like a person from another planet, I felt like it. I had never felt
uglier in my life, the invalid from mars.
being bed-ridden I was now couch ridden, which was much more comfortable. For
the last 8 months I have laid on my right side or flat on my back, I would have
given anything to lie on my stomach. With all of the pain and medication
that I was taking it was hard to do anything. There is a limit of TV (I
have now completed watching all episodes of Law and Order), reading and puzzle
books that one can tolerate.
A few months
later my bottom had healed enough for me to sit up. Finally I could sit up
on the couch for a few minutes and eat a meal. A small accomplishment that
seemed so large to me. Physiotherapy started coming to my house twice a
week. The story that if you don't use it you will loose it is very true.
Without using my left side for months on end I had to learn to walk again.
Just raising my leg up 4-6 inches laying or sitting was like climbing Mt.
Everest. The radiation did so much damage to my vulva and my bottom that they
were still rare.
That is when
I started to learn imagery to deal with the pain and the boredom. A few
months later I was able to walk very short distances progressing to actually
going outside of the house. The cane is a wonderful thing. I
remember the first time that I put on real clothes it made my day. My first
experience at meeting the real world again was only a very short trip to my
family doctor about 1 km away. It took all I had to get there but I was
out, free at last, well for an hour anyway. I was on my way to recovery. I
then started going out to physiotherapy twice a week for six months until we
realized that it was not doing anymore good.
recuperating at home for months the months have turned into years. The time off
work is now over 7 years. The radiation damaged my vulva, groin and rear end to
the point that they will never heal properly. It also damaged some of my
internal organs. I never realized when the surgeon dissected my lymph nodes from
both my groins and abdomen the trouble it would cause. Without these precious
nodes I have no drainage in my left leg at all. The result is your leg looks
like a watermelon and acts like one (large and heavy). The fluid that your leg
retains presses on nerves you never knew that you owned. Which brings that pain
thing on again.
I am thankful that I
overcame the odds but I will kid you not that the day to day life of being
disabled is no easy task. Not many people think that a 36-year-old should be
disabled. First of all you get the looks of people when you pull into
handicapped parking spaces (I only use when I need to). They automatically think
you are an abuser until they see me try to get out of my vehicle and walk. Or
you receive comments that you are too young to be sick. Well I agree but what am
I supposed to do about it. Like I picked to have cancer. I guess the hardest
part of being ill is to accept the fact that this is it. I am not going to get
any better. I still have areas that are not healed and never will. I am in
constant pain and continue to take large doses of morphine for it. When I became
ill I strived to become well enough to return to work, it kept me going it was
my goal. Once realizing this goal was not to be ever met it first crushed me.
Then after the self-pity routed was exhausted, I started my life again. I was so
busy being sick that I never had time to be well again. I will never be the same
so hey let's get on with it. I have learned to be glad for just a few minutes a
day that I can escape. You need to be glad for that moment. Think to yourself.
"How are you this moment?" OK? If it's ok then great enjoy it, if its
not then learn that it will pass. You will have good moments and bad moments,
learn to enjoy the good moments when you have them.
I would also like to add
that if it weren’t for the fantastic support of my family and great friends I
would have never made this journey. Thank you very much. I could have
never did this without you all. You are the greatest!
god bless you all,Click
here My Story Part 2