The worst place for a self-professed 'road biker' to get cancer is in the butt. No ifs ands or butts about it.
Recovery is a bitch. I cannot bike.
I'm assuming its cause of all of the radiation that I received but I'm beyond feeling sloth-like and I have been like that for quite some time.
I was biking 120 miles a week before I was diagnosed in July of 06.
Get diagnosed, life goes to shit and you get a free coupon to some nasty, toxic drugs and you spend months trying to get over the effects of those.
Or better yet, get almost 5000 cGys of radiation to your pelvis and see how stiff that is gonna make your legs.
While you're at it, let's huck in some premature, immediate menopause and make the whole 'cancer' experience really interesting.
"Um, how is my body going to deal with all this? What will I experience?" you ask holding your hands cause they are shaking so much. You are completely frightened of that "chemo" word. You've heard the stories that happened to a friend of a friend.
"Everyone is different", they say cause they are so scared of getting sued I think.
"Will I lose my hair?" I ask like it really matters if you have your hair when you are fighting for your life here...
I never lost my hair nor did I expect to. I decided that was NOT going to happen to me.
"You'll feel almost human 12 months after treatment has ended" they said.
Its been 6 weeks post treatment for me and not only am I out running and have a membership at a gym working out, I also do yoga and pilates.
I've just last week started biking again and although its against my doctor's advice, I've decided to do what feels right for me.
I am a bike-rider through and through. I might as well be dead if I cannot take my bike out of my bedroom and put a few miles on the girl and then put her back just as gently as I rode her that day.
I am a cardio FREAK as well as a carb FREAK. This is a perfect combination of person to be. :)
Picking a 'fitness' goal was a priority today at the first meeting EVER with my very own personal trainer.
Trina reviewed my history and once she picked her jaw up off of the ground, she took my measurements and bmi etc.
Body fat is 23% and my bmi is a normal 23 as well.
I'd like to try a triathelon next year although that sounds so absurd and flighty. There is a secret part of me that wants to do a bit more 'stuff' before I'm done here on this round of the game of life.
I'm as healthy as I have ever been and yet I still carry the cross of having 'had' cancer and that might be influencing me to buy 'alpine' squirrel bread and get in the best damn body shape that I've ever been.
Lance Armstrong had testicular cancer and maybe that was what motivated him to go back and do it again after he fumbled and almost fell to the ground with his cancer.
Maybe the thought of never doing something again really does make us get back up and not only do it again but do it even better.
Saturday, February 17, 2007
Monday, January 29, 2007
Adversity vs. Character
We have all heard the expression, "Adversity breeds character".
Today I was thinking about the meaning of this and how it relates to WHO I have become after my short fight with the cancer fairy.
This fight would definitely fit into the adversity pot so I guess that builds my character right? Is it really that simple?
We always hear of some poor lass going through something quite 'hellish' to you and I and coming out at the end of the day freaking glowing with an aura we all wished we had.
Mother Theresa grew up in the ghettos going through hellish conditions and she died trying to save the poor.
Why is it that in order for us to become 'nicer' people, we have to go through such horror stories which proves our worth to go out and do good in the world?
I think the answer to part of the why is to be found in the number of these 'events' we can tolerate in our lifetimes and how we deal with them when they do.
Cancer would fall into one of those life-altering events which when completed, make us step back and re-evaluate EVERYTHING which we've done.
Maybe this by itself makes us nicer people. When we go back and let go of our pasts and look to improve our futures, it does make us calmer which should make us nicer. :)
I correspond to people all over North America who have had cancer. Some of these people have finished their treatment and are only offering me a bit of wisdom or experience. Most of them however are just going through the 'holy shit' stage and looking for someone, no, anyone to hear them out and calm their fears.
Some of these people will become dear friends for life and some will only be around long enough to find the strength to do it by themselves.
A lot of people stricken with cancer have nowhere to go. Cancer support is 'available' but not initiated. This is so wrong.
How can anyone think that someone with cancer should have the option of having someone to talk to? Shouldn't it be mandatory that you do? How can you not need to talk to someone?
Once cancer treatment is finished, the victims are shuffled out the door with raw-red asses or missing limbs and told to come back in 3 months for re-evaluation.
They go home with a 'red' card to call in case of emergencies and they sit in their front rooms and they look at the clock and they listen to their bodies and they get scared. They are completely cut off from the life-saving dudes that were their best buddies only days ago.
I was that girl who shuffled outside so scared of the future but I decided to do something about it.
I educated myself on my cancer and I got together some questions and I decided to alleviate my fears. I met with my doctors and I demanded them to help me find resources to help myself.
When this feat was accomplished, I sat back and one night decided that I could do this for other people going through their own fights with their own beast on-board.
In a lot of ways, a cancer is a cancer is a cancer....
Am I a nicer person? Yup, I am.
Am I like Mother Theresa? Nope, I'm not.
I'm just an everyday single mom who went through a long tunnel but never once lost sight of the glow of the end of it and I decided to make a difference.
It doesn't really matter if the difference is big or small at this point.
I just want to lay in bed tonight and think about the good that I did today and ponder how better it will be tomorrow.
Today I was thinking about the meaning of this and how it relates to WHO I have become after my short fight with the cancer fairy.
This fight would definitely fit into the adversity pot so I guess that builds my character right? Is it really that simple?
We always hear of some poor lass going through something quite 'hellish' to you and I and coming out at the end of the day freaking glowing with an aura we all wished we had.
Mother Theresa grew up in the ghettos going through hellish conditions and she died trying to save the poor.
Why is it that in order for us to become 'nicer' people, we have to go through such horror stories which proves our worth to go out and do good in the world?
I think the answer to part of the why is to be found in the number of these 'events' we can tolerate in our lifetimes and how we deal with them when they do.
Cancer would fall into one of those life-altering events which when completed, make us step back and re-evaluate EVERYTHING which we've done.
Maybe this by itself makes us nicer people. When we go back and let go of our pasts and look to improve our futures, it does make us calmer which should make us nicer. :)
I correspond to people all over North America who have had cancer. Some of these people have finished their treatment and are only offering me a bit of wisdom or experience. Most of them however are just going through the 'holy shit' stage and looking for someone, no, anyone to hear them out and calm their fears.
Some of these people will become dear friends for life and some will only be around long enough to find the strength to do it by themselves.
A lot of people stricken with cancer have nowhere to go. Cancer support is 'available' but not initiated. This is so wrong.
How can anyone think that someone with cancer should have the option of having someone to talk to? Shouldn't it be mandatory that you do? How can you not need to talk to someone?
Once cancer treatment is finished, the victims are shuffled out the door with raw-red asses or missing limbs and told to come back in 3 months for re-evaluation.
They go home with a 'red' card to call in case of emergencies and they sit in their front rooms and they look at the clock and they listen to their bodies and they get scared. They are completely cut off from the life-saving dudes that were their best buddies only days ago.
I was that girl who shuffled outside so scared of the future but I decided to do something about it.
I educated myself on my cancer and I got together some questions and I decided to alleviate my fears. I met with my doctors and I demanded them to help me find resources to help myself.
When this feat was accomplished, I sat back and one night decided that I could do this for other people going through their own fights with their own beast on-board.
In a lot of ways, a cancer is a cancer is a cancer....
Am I a nicer person? Yup, I am.
Am I like Mother Theresa? Nope, I'm not.
I'm just an everyday single mom who went through a long tunnel but never once lost sight of the glow of the end of it and I decided to make a difference.
It doesn't really matter if the difference is big or small at this point.
I just want to lay in bed tonight and think about the good that I did today and ponder how better it will be tomorrow.
Saturday, January 27, 2007
The return from Oz
It has become a nightly occurrence in my house to have a bubble bath.
During my cancer treatment, I literally lived in the bathtub finding relief from the radiation burns.
They say it takes 6 weeks of doing something to make it a habit and after being immersed in it for up to 5 hours a day for weeks on end, my habit was born.
Last night bathing with my son in the jacuzzi tub with overflowing bubbles, I happened to notice something.
My pubic hair is growing back !!
Its not my normal shade of blondy/red but like a peach-fuzz of sorts and I see tiny little hairs peeking through the skin. Its almost as if the hairs realize that there is no more radiation and they are seeing the glow from the sun for the first time in a long time.
This got me thinking about how 'fuzzy' in some ways this whole cancer experience has become.
Sure, I remember the radiation and I remember the gut-wrenching fear that I was experiencing but its as if the whole cancer show is retreating back somewhere inside me and finding a comfy place to call its new home.
I no longer get those episodes where I'd sit on the couch and bow my head almost crying. I'd have that feeling as if your stomach was right by your throat and you were going to puke at any second.
I realized yesterday that I hadn't had one is weeks and I hardly even noticed. How could I not notice this? I'd been waiting for them to go away for so long. Its as if life slowly comes back so gently and surely that you don't even get a chance to be afraid of it anymore.
My energy level is almost back to normal and I am shocked that I did not realize how sick I actually felt about 6 months ago before diagnosis. How could I not have known?
My days are now filled with getting used to a new career and fostering dogs and looking after my family and sometimes its as if I didn't even have cancer.
I will never forget how I felt nor will I ever forget the fact that I feel betrayed by my own body which I trusted explicitly only 6 months ago.
The door that I've emerged from is almost closed. There are a few things that still need to find their place in my mind but each day I find them less invasive and hardly beckoning for my attention.
Goodbye Oz and goodbye Dorothy.
You have taught me some very important lessons but the time has come to again seize my life back and relish in the newly sprouting pubic hair.
Spring is almost here and I see so many other doors in front of me that need some attention.
During my cancer treatment, I literally lived in the bathtub finding relief from the radiation burns.
They say it takes 6 weeks of doing something to make it a habit and after being immersed in it for up to 5 hours a day for weeks on end, my habit was born.
Last night bathing with my son in the jacuzzi tub with overflowing bubbles, I happened to notice something.
My pubic hair is growing back !!
Its not my normal shade of blondy/red but like a peach-fuzz of sorts and I see tiny little hairs peeking through the skin. Its almost as if the hairs realize that there is no more radiation and they are seeing the glow from the sun for the first time in a long time.
This got me thinking about how 'fuzzy' in some ways this whole cancer experience has become.
Sure, I remember the radiation and I remember the gut-wrenching fear that I was experiencing but its as if the whole cancer show is retreating back somewhere inside me and finding a comfy place to call its new home.
I no longer get those episodes where I'd sit on the couch and bow my head almost crying. I'd have that feeling as if your stomach was right by your throat and you were going to puke at any second.
I realized yesterday that I hadn't had one is weeks and I hardly even noticed. How could I not notice this? I'd been waiting for them to go away for so long. Its as if life slowly comes back so gently and surely that you don't even get a chance to be afraid of it anymore.
My energy level is almost back to normal and I am shocked that I did not realize how sick I actually felt about 6 months ago before diagnosis. How could I not have known?
My days are now filled with getting used to a new career and fostering dogs and looking after my family and sometimes its as if I didn't even have cancer.
I will never forget how I felt nor will I ever forget the fact that I feel betrayed by my own body which I trusted explicitly only 6 months ago.
The door that I've emerged from is almost closed. There are a few things that still need to find their place in my mind but each day I find them less invasive and hardly beckoning for my attention.
Goodbye Oz and goodbye Dorothy.
You have taught me some very important lessons but the time has come to again seize my life back and relish in the newly sprouting pubic hair.
Spring is almost here and I see so many other doors in front of me that need some attention.
Sunday, January 21, 2007
I'm beginning to move forward
Its quite remarkable how we have the ability to fall back into our lives after cancer and get back on the bus.
I'm beginning to look at my clothes again and I'm beginning to prefer the stiletto boots over the comfy outdoor slippers lined with sheep-wool that were the staple of my fashion diet as of late.
Gone are the basic black and pearls that I used to wear. Bright yellows and greens and anything that says 'lively' has now replaced most of the black.
I have spent a gazillion dollars on e-bay buying packaging for the new 'me' and it feels wonderful. The emerald solitaire earrings caught my eye and I spent 3 days outbidding a lady aptly named 'newgirl' for a pair of antique mined diamond studs that I absolutely had to have.
I stand in front of the mirror critiquing my form and making small mental notes of things that I would like to change and how to go about it. I even did some yoga today.
The body is a wonderful thing. The way that it can heal after undergoing toxic drugs and radiation never ceases to amaze me.
Its sometimes like I've never had cancer at all.
Tomorrow I wake up and go to my new job getting trained to help others going through their own health issues and I feel so good about that.
I want to look my best because I feel the best that I have ever felt in a long time.
I'm not in pain anymore and I'm not dragging myself to chemo or radiation or to see some other doctor for something or another.
My life is calm and it is has personal purpose.
I can't think of anything else that I would like to have for today other than that.
I'm beginning to look at my clothes again and I'm beginning to prefer the stiletto boots over the comfy outdoor slippers lined with sheep-wool that were the staple of my fashion diet as of late.
Gone are the basic black and pearls that I used to wear. Bright yellows and greens and anything that says 'lively' has now replaced most of the black.
I have spent a gazillion dollars on e-bay buying packaging for the new 'me' and it feels wonderful. The emerald solitaire earrings caught my eye and I spent 3 days outbidding a lady aptly named 'newgirl' for a pair of antique mined diamond studs that I absolutely had to have.
I stand in front of the mirror critiquing my form and making small mental notes of things that I would like to change and how to go about it. I even did some yoga today.
The body is a wonderful thing. The way that it can heal after undergoing toxic drugs and radiation never ceases to amaze me.
Its sometimes like I've never had cancer at all.
Tomorrow I wake up and go to my new job getting trained to help others going through their own health issues and I feel so good about that.
I want to look my best because I feel the best that I have ever felt in a long time.
I'm not in pain anymore and I'm not dragging myself to chemo or radiation or to see some other doctor for something or another.
My life is calm and it is has personal purpose.
I can't think of anything else that I would like to have for today other than that.
Friday, January 12, 2007
The gift of optimism
Why the hell am I so optimistic anyways?
I have always said that I was a true optimist and the question does begged to be asked and again, I have another story to tell.
I was originally married at 19 and got pregnant with my first child at 20.
After having a perfectly normal 1st pregnancy I went into labour with my son and my entire world fell completely apart in the course of 8 hours.
During active labour while in transition, my son's heart-rate went screaming down to the low 60s and all I remember is breathing extra air and all of these bells going off and doctors running down the hallways not having the guts to look me in the eye and answer the question, "Is my baby all right?"
I was too far into labour to have an emergency cesarean section and my son was born shortly after that completely lifeless.
They did get his heart going again and within minutes he was being whisked away via air-ambulance to a far away hospital and I was left standing at the door to the hospital crying and bleeding and wondering what my baby actually looked like.
Within 48 hours of crying and holding his little hands and literally hundreds of tests, we were taken into a small room and told that our son was basically brain dead.
We opted to donate his organs and after lots of soul-searching we also decided to shut down the pumps that fed him his life via machines and IVs.
About an our prior to shutting it down, there was additional tests that had to be done to confirm brain death.
When ice chips were put into his ears one of his pupils dilated so he was deemed to be alive and not really brain dead. Oh the irony of that statement.
We shut down the support anyways and he continued to breathe.
This went on for a heart-breaking 18 months and nearly destroyed me inside.
It was heart-breaking to walk into a hospital room to see your son that has not once moved or made any gesture of any kind and his face is black and swollen and breaking open because he 'coded' a few hours ago and was almost dead but some 'Florence Nightengale' nurse came in and got him going again.
A time comes when you can no longer do this as a mom. As a breed, we are incapable of watching our own kids in agony and silently sit by and watch them suffer like that.
I woke up one night from a nightmare and decided that it was going to end.
I went into a lawyer and we got an injunction against the hospital and we removed our son from that hospital and put him into another.
Ironically, the only hospital that would take him in and stop feeding him was the same one where he was born.
He was transferred to the hospital and heavily sedated. He was given IV fluids but no food into the tube into his stomach.
We basically waited at home for him to die and it was most undoubtedly one of the hardest and most life-affirming things that I have ever done to date included.
One night I woke up at 2am unable to sleep and felt a need to write.
I got a pen and a piece of paper and wrote out the following like it was ingrained in my brain. It was like it had always been there and out it flowed in the form of a poem entitled, "The Gift"...
It reads as follows:
On the day you were born, the Lord Jesus above
Did look down from heaven and give you his love.
You begged him to take you gently by hand
He said, "Darling TJ, it is not in the plan".
He knew you were suffering but chose you to stay,
To give me a gift in your own special way.
You taught me compassion, how to love and to dream.
You taught me to hope although hopeless it seemed.
You make me grow up, feel pain and to pray
It was then that I realized that you could not stay.
Everyone was crying because it was oh so sad.
But these are sacrifices we make as a mom or as a dad.
I return to you my own special gift for everyone to see.
It does not compare to the one you gave, but it was meant to be.
My gift to you is accepting that you must be free from pain.
You gave me oh so very much. You did not die in vain.
The gift is from my very heart but oh, it hurts me so.
For I have to love you enough, TJ, to gently let you go......
Love Mom
About 2 hours later, the phone rang.
I did not need to answer the phone to find out that my son had passed away a short time ago.
The above poem was read at his eulogy and inscribed on his headstone.
I developed faith and perseverance and a whole lot of optimism having lived through that.
The world is a great place if we look at the positive things around us.
My son taught me so many things with the entire cumulation of those things being my pure and simple optimism for life and all that it entails.
I love you TJ...!!! I'd hope that I've done you proud.
Mom
I have always said that I was a true optimist and the question does begged to be asked and again, I have another story to tell.
I was originally married at 19 and got pregnant with my first child at 20.
After having a perfectly normal 1st pregnancy I went into labour with my son and my entire world fell completely apart in the course of 8 hours.
During active labour while in transition, my son's heart-rate went screaming down to the low 60s and all I remember is breathing extra air and all of these bells going off and doctors running down the hallways not having the guts to look me in the eye and answer the question, "Is my baby all right?"
I was too far into labour to have an emergency cesarean section and my son was born shortly after that completely lifeless.
They did get his heart going again and within minutes he was being whisked away via air-ambulance to a far away hospital and I was left standing at the door to the hospital crying and bleeding and wondering what my baby actually looked like.
Within 48 hours of crying and holding his little hands and literally hundreds of tests, we were taken into a small room and told that our son was basically brain dead.
We opted to donate his organs and after lots of soul-searching we also decided to shut down the pumps that fed him his life via machines and IVs.
About an our prior to shutting it down, there was additional tests that had to be done to confirm brain death.
When ice chips were put into his ears one of his pupils dilated so he was deemed to be alive and not really brain dead. Oh the irony of that statement.
We shut down the support anyways and he continued to breathe.
This went on for a heart-breaking 18 months and nearly destroyed me inside.
It was heart-breaking to walk into a hospital room to see your son that has not once moved or made any gesture of any kind and his face is black and swollen and breaking open because he 'coded' a few hours ago and was almost dead but some 'Florence Nightengale' nurse came in and got him going again.
A time comes when you can no longer do this as a mom. As a breed, we are incapable of watching our own kids in agony and silently sit by and watch them suffer like that.
I woke up one night from a nightmare and decided that it was going to end.
I went into a lawyer and we got an injunction against the hospital and we removed our son from that hospital and put him into another.
Ironically, the only hospital that would take him in and stop feeding him was the same one where he was born.
He was transferred to the hospital and heavily sedated. He was given IV fluids but no food into the tube into his stomach.
We basically waited at home for him to die and it was most undoubtedly one of the hardest and most life-affirming things that I have ever done to date included.
One night I woke up at 2am unable to sleep and felt a need to write.
I got a pen and a piece of paper and wrote out the following like it was ingrained in my brain. It was like it had always been there and out it flowed in the form of a poem entitled, "The Gift"...
It reads as follows:
On the day you were born, the Lord Jesus above
Did look down from heaven and give you his love.
You begged him to take you gently by hand
He said, "Darling TJ, it is not in the plan".
He knew you were suffering but chose you to stay,
To give me a gift in your own special way.
You taught me compassion, how to love and to dream.
You taught me to hope although hopeless it seemed.
You make me grow up, feel pain and to pray
It was then that I realized that you could not stay.
Everyone was crying because it was oh so sad.
But these are sacrifices we make as a mom or as a dad.
I return to you my own special gift for everyone to see.
It does not compare to the one you gave, but it was meant to be.
My gift to you is accepting that you must be free from pain.
You gave me oh so very much. You did not die in vain.
The gift is from my very heart but oh, it hurts me so.
For I have to love you enough, TJ, to gently let you go......
Love Mom
About 2 hours later, the phone rang.
I did not need to answer the phone to find out that my son had passed away a short time ago.
The above poem was read at his eulogy and inscribed on his headstone.
I developed faith and perseverance and a whole lot of optimism having lived through that.
The world is a great place if we look at the positive things around us.
My son taught me so many things with the entire cumulation of those things being my pure and simple optimism for life and all that it entails.
I love you TJ...!!! I'd hope that I've done you proud.
Mom
Thursday, January 11, 2007
There is always a black sheep
There is nothing like having had cancer to make someone more philosophical in nature.
I remember taking plenty of courses on statistics in university but never really saw the true relevance till I was presented with cancer statistics.
When first diagnosed, I was most concerned with the statistical chance that I would survive it. This is human nature.
Once I figured out that I'd likely be here next Christmas, I started delving into the other stats related to my treatment and to the side effects I would experience.
95% of people treated with anal cancer will lose their hair completely or else have 'significant' thinning of the hair they have. (The thinning is referring to losing over HALF of your hair...holy crap..)
I have long strawberry blond hair and I REFUSED to give it up. I vowed that no more hair would fall out of my head than before I started the chemo-therapy roller-coaster.
Did I?
Yes, I lost a few hairs but no more than I did on most days in Winter. God knows, I was always checking. I brushed it and brushed it waiting for the tell-tale sign but it never once happened.
If anything, my hair got curlier. The oncologists told me that sometimes yes, this does happen.
I am irish by background so this did nothing but add to my putting more faith in my heritage and the curly locks of the irish women we all remember.
Chemo-therapy drugs are toxic poisons to our bodies that kill off good, healthy cells as well as the bad boy cancer ones.
There are drugs that are taken to compensate for the nausea one gets from having a combination of drugs coursing through our veins via a PICC line. (One pill makes you bigger and one pill makes you small and the one the doctor gives you doesn't do anything at all...Go ask Alice...ok that was wierd...flashback to younger days.:)
I dutifully filled my prescription but left them at home on the first day of Chemo.
The nurses didn't want me to take the chemo drugs without the nausea drugs but I was hooped. They could not give me anything there as I drove myself in and had no one to drive me home 1/2 stoned and ready to sleep off the drug's effects.
"Give me the chemo", I said. "I'll take a pill when I get home."
I get rigged up with the drugs in my hip pack and walk out of the cancer centre with over 100,000.00 in gene therapy and chemo drugs and go home to find myself NOT being nauseous at all.
Why take a drug if we don't have to right? My body was probably thanking me for not adding to the cocktail of toxic drugs that were already on-board and looking for the cancer cells in my body.
Did I get nauseous? Nope....Did I sleep a bit more than normal? Yup, I did but I DID NOT get sick once.
When I was first diagnosed with anal cancer, I researched it for weeks. I wanted to know where I was right now and where I could potentially be going as a 'road trip', of sorts.
I found though that once I got to a certain point of knowledge acquirement, I felt safe and I felt comfortable in what the game-plan was going to be and how it was going to effect my body and my life in general.
Sure I perused the chat boards reserved for us people that are 'stricken' with cancer. It provides a lot of people with solace and comfort and I'm sure gives everyone a sense of belonging when all the stories are basically the same.
I think I stayed active on the boards for about 3 weeks into treatment and then one day I woke up and didn't feel a need to 'check in' on a daily basis anymore.
It was like passing a certain point on your first bike-ride where your mom and your dad step back and just let you go. You look over your shoulder and you're secretly glad that you don't need them anymore. You can do it alone now.
You've seen what its like and you've had enough time to accustom yourself to the game.
There were others on the boards that had been NED for years but still felt a need to be with others like them.
In a strange way, I am really no different.
I am helping others with cancer but I'm not looking to get support from others like me. I am wanting to give support to others like me.
Is there really a difference?
Some of us need to cry on someone's shoulder in a time of need. Some of us need to reach out and help someone else to get the help that we need.
I sometimes feel robbed in this cancer experience although I feel so blessed and I am so thankful to be writing this...so far anyways..:)
I never lost my hair and frankly, I'm doing pretty damn good only being well, 2 months out of treatment now.
I get the distinct feeling from other 'survivors' that I didn't really have a 'bad' cancer because my treatment protocol was so short and so 'uneventful.'
Its somewhat like your 'bike' is not as good as my 'bike' is. This bike has been through way more crashes than yours has so is that much better.
What the hell is up with that?
Why can't we all just agree that we had cancer and just leave it at that?
Cancer makes some people so damn bitter...hehehe
Its really odd talking with other anal cancer survivors...(4000 diagnosed in N. America last year. My oncologist has only treated it one other time in his 35 year career.)
I had a clinical trial protocol that is completely different than anyone else's. I did not get to experience what everyone else did.
I had 3 times weekly visits with psychologists as part of my research team and have nothing but awesome things to say about these people...(you rock guys !)
Fellow 'ass' cancer people are fearful of the treatment that I had as its un-proven.
I'm a 'black sheep' of sorts among the masses and I think it makes them feel insecure that things are changing now.
Statistically I am an odd-ball in this game and I sometimes wonder why this is.
Why are the statistics so very different than my experience?
I think the power of the mind is an amazing thing. It is what sets one thing apart from another and makes us lay awake at night and wonder why these things happen as they do.
It takes a black sheep to makes things change. Its always the black sheep that bends the rules and bounces over the curbs instead of gently hitting them every now and then.
The world needs a few more black sheep.
I remember taking plenty of courses on statistics in university but never really saw the true relevance till I was presented with cancer statistics.
When first diagnosed, I was most concerned with the statistical chance that I would survive it. This is human nature.
Once I figured out that I'd likely be here next Christmas, I started delving into the other stats related to my treatment and to the side effects I would experience.
95% of people treated with anal cancer will lose their hair completely or else have 'significant' thinning of the hair they have. (The thinning is referring to losing over HALF of your hair...holy crap..)
I have long strawberry blond hair and I REFUSED to give it up. I vowed that no more hair would fall out of my head than before I started the chemo-therapy roller-coaster.
Did I?
Yes, I lost a few hairs but no more than I did on most days in Winter. God knows, I was always checking. I brushed it and brushed it waiting for the tell-tale sign but it never once happened.
If anything, my hair got curlier. The oncologists told me that sometimes yes, this does happen.
I am irish by background so this did nothing but add to my putting more faith in my heritage and the curly locks of the irish women we all remember.
Chemo-therapy drugs are toxic poisons to our bodies that kill off good, healthy cells as well as the bad boy cancer ones.
There are drugs that are taken to compensate for the nausea one gets from having a combination of drugs coursing through our veins via a PICC line. (One pill makes you bigger and one pill makes you small and the one the doctor gives you doesn't do anything at all...Go ask Alice...ok that was wierd...flashback to younger days.:)
I dutifully filled my prescription but left them at home on the first day of Chemo.
The nurses didn't want me to take the chemo drugs without the nausea drugs but I was hooped. They could not give me anything there as I drove myself in and had no one to drive me home 1/2 stoned and ready to sleep off the drug's effects.
"Give me the chemo", I said. "I'll take a pill when I get home."
I get rigged up with the drugs in my hip pack and walk out of the cancer centre with over 100,000.00 in gene therapy and chemo drugs and go home to find myself NOT being nauseous at all.
Why take a drug if we don't have to right? My body was probably thanking me for not adding to the cocktail of toxic drugs that were already on-board and looking for the cancer cells in my body.
Did I get nauseous? Nope....Did I sleep a bit more than normal? Yup, I did but I DID NOT get sick once.
When I was first diagnosed with anal cancer, I researched it for weeks. I wanted to know where I was right now and where I could potentially be going as a 'road trip', of sorts.
I found though that once I got to a certain point of knowledge acquirement, I felt safe and I felt comfortable in what the game-plan was going to be and how it was going to effect my body and my life in general.
Sure I perused the chat boards reserved for us people that are 'stricken' with cancer. It provides a lot of people with solace and comfort and I'm sure gives everyone a sense of belonging when all the stories are basically the same.
I think I stayed active on the boards for about 3 weeks into treatment and then one day I woke up and didn't feel a need to 'check in' on a daily basis anymore.
It was like passing a certain point on your first bike-ride where your mom and your dad step back and just let you go. You look over your shoulder and you're secretly glad that you don't need them anymore. You can do it alone now.
You've seen what its like and you've had enough time to accustom yourself to the game.
There were others on the boards that had been NED for years but still felt a need to be with others like them.
In a strange way, I am really no different.
I am helping others with cancer but I'm not looking to get support from others like me. I am wanting to give support to others like me.
Is there really a difference?
Some of us need to cry on someone's shoulder in a time of need. Some of us need to reach out and help someone else to get the help that we need.
I sometimes feel robbed in this cancer experience although I feel so blessed and I am so thankful to be writing this...so far anyways..:)
I never lost my hair and frankly, I'm doing pretty damn good only being well, 2 months out of treatment now.
I get the distinct feeling from other 'survivors' that I didn't really have a 'bad' cancer because my treatment protocol was so short and so 'uneventful.'
Its somewhat like your 'bike' is not as good as my 'bike' is. This bike has been through way more crashes than yours has so is that much better.
What the hell is up with that?
Why can't we all just agree that we had cancer and just leave it at that?
Cancer makes some people so damn bitter...hehehe
Its really odd talking with other anal cancer survivors...(4000 diagnosed in N. America last year. My oncologist has only treated it one other time in his 35 year career.)
I had a clinical trial protocol that is completely different than anyone else's. I did not get to experience what everyone else did.
I had 3 times weekly visits with psychologists as part of my research team and have nothing but awesome things to say about these people...(you rock guys !)
Fellow 'ass' cancer people are fearful of the treatment that I had as its un-proven.
I'm a 'black sheep' of sorts among the masses and I think it makes them feel insecure that things are changing now.
Statistically I am an odd-ball in this game and I sometimes wonder why this is.
Why are the statistics so very different than my experience?
I think the power of the mind is an amazing thing. It is what sets one thing apart from another and makes us lay awake at night and wonder why these things happen as they do.
It takes a black sheep to makes things change. Its always the black sheep that bends the rules and bounces over the curbs instead of gently hitting them every now and then.
The world needs a few more black sheep.
Tuesday, January 9, 2007
Sometimes all you have to do is believe.
I'm getting a wee bit bored sitting at home on the 'clinical trial' money.
I sit making good money, doing nothing except being a great tool for some cancer centre to make a great deal of cash from. I've been told this and frankly don't have much to really say about it other than, "YIPPEEE....I get to live..."...Its quite simple really. I'm hardly stupid.
I have accepted this.
Some might say that this says awful things about me. I tend to disagree. I think one of my best qualities is wanting to do things that do it for 'me'.
Being an aquarian chick, I've always had these humanitarian, super-hero traits.
I cross streets to pet puppies and I always stop for people stranded on roads.
The psych. industry might say that I'm 'lacking in confidence'. I think not.
I just get my 'ju' (so to speak) from helping other people or other dogs or birds or goats or sheep.
The very first time I saved a litter of puppies that needed syringe feeds every 2 hours and they lived to see the day, I was incredibly and almost 'sucker-like' hooked.
Does she become the warped chick that ends up with 60 cats doing her rescue thing when she is 60 and blue-haired?
I decided to try a variance on that path and do my own thing.
Since I started this whole cancer journey, I have changed.
It wasn't an instant change. It took awhile evaluating where I was and what I wanted to become when I was all 'growned up.'
I have this need to do better by others. I'm not sure what to call it.
It was like waking up one day and feeling like you've 'done good' and you want to share it with others.
I was perusing the local paper today and came across a career ad that appealed to me and yet I did not possess the 5 years 'health-care' experience required.
The ad said that they were looking for an ideal applicant as one being someone who possessed the innate ability to solve stressful situations.
All applicants were invited to submit a resume outlining qualifications as well as describing a current stressful situation and how you handled it.
I was thinking all day about how I would be perfect for that type of position.
I had the skill-set but did not have the qualifications in terms of 'field experience'.
After about an hour, I sent them a resume outlining the fact that I had cancer and was getting it together after having done so but I wanted to do something different.
I went for an interview 3 hours later and spent 30 minutes giving them my 'story' and hearing their remarks.
Cancer hasn't done too wrong by me. I've worn it well and if people were to pick their cancer based on appearance, they'd probably pick the one that I was gifted with.
They loved me and thought that I would be awesome dealing with palliative care patients and end of life issues.
Which comes back to the question of , "Why Beady? Why do you want to deal with people who are stressing out? Why would that make you tick?
I did it. I have been in a completely utterly stressful situation and I survived.
This was the premise that I used to secure 2 job interviews and get invited to the 'psych. interview' requirement for the job.
Whether I get the job or not is irrelevant at this point.
I had an interview.
Obviously, what i had happen to me was worth the 5 years of experience I was supposed to have.
Maybe my story was enough.
Maybe my believing in 'myself' was enough to get me that job.
We shall see.
I sit making good money, doing nothing except being a great tool for some cancer centre to make a great deal of cash from. I've been told this and frankly don't have much to really say about it other than, "YIPPEEE....I get to live..."...Its quite simple really. I'm hardly stupid.
I have accepted this.
Some might say that this says awful things about me. I tend to disagree. I think one of my best qualities is wanting to do things that do it for 'me'.
Being an aquarian chick, I've always had these humanitarian, super-hero traits.
I cross streets to pet puppies and I always stop for people stranded on roads.
The psych. industry might say that I'm 'lacking in confidence'. I think not.
I just get my 'ju' (so to speak) from helping other people or other dogs or birds or goats or sheep.
The very first time I saved a litter of puppies that needed syringe feeds every 2 hours and they lived to see the day, I was incredibly and almost 'sucker-like' hooked.
Does she become the warped chick that ends up with 60 cats doing her rescue thing when she is 60 and blue-haired?
I decided to try a variance on that path and do my own thing.
Since I started this whole cancer journey, I have changed.
It wasn't an instant change. It took awhile evaluating where I was and what I wanted to become when I was all 'growned up.'
I have this need to do better by others. I'm not sure what to call it.
It was like waking up one day and feeling like you've 'done good' and you want to share it with others.
I was perusing the local paper today and came across a career ad that appealed to me and yet I did not possess the 5 years 'health-care' experience required.
The ad said that they were looking for an ideal applicant as one being someone who possessed the innate ability to solve stressful situations.
All applicants were invited to submit a resume outlining qualifications as well as describing a current stressful situation and how you handled it.
I was thinking all day about how I would be perfect for that type of position.
I had the skill-set but did not have the qualifications in terms of 'field experience'.
After about an hour, I sent them a resume outlining the fact that I had cancer and was getting it together after having done so but I wanted to do something different.
I went for an interview 3 hours later and spent 30 minutes giving them my 'story' and hearing their remarks.
Cancer hasn't done too wrong by me. I've worn it well and if people were to pick their cancer based on appearance, they'd probably pick the one that I was gifted with.
They loved me and thought that I would be awesome dealing with palliative care patients and end of life issues.
Which comes back to the question of , "Why Beady? Why do you want to deal with people who are stressing out? Why would that make you tick?
I did it. I have been in a completely utterly stressful situation and I survived.
This was the premise that I used to secure 2 job interviews and get invited to the 'psych. interview' requirement for the job.
Whether I get the job or not is irrelevant at this point.
I had an interview.
Obviously, what i had happen to me was worth the 5 years of experience I was supposed to have.
Maybe my story was enough.
Maybe my believing in 'myself' was enough to get me that job.
We shall see.
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