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BookMY 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:)

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