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My Story About Vulvar Cancer  
"A true Story"

Part 1 - My 30th birthday gift was Cancer.

Part 2 - The Cancer didn't kill me, but will the cure?

 Grab a cup of your favorite drink first before you read.

Note: 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!

A few 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.  

I have 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. 

Before I 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.

They 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.

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I had now been sentenced.

After 2 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. 

Radiation Hell

Through the 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. 

Home Sweet Home

Finally I 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.

Back Again

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 size). 
Ouch is all I can add.

Unfortunately 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.

After 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.

Home 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. 

The homecare 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. 

Instead of 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.  

7 Years Later

After 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!

May god bless you all,
Anne :)

 

Click here My Story Part 2
 

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