I have taken some time away from my blog, from all the 'talk' to think...once I think i have made my decision I change it...and once I remake my decision I make it again...
The BRCA group I formed has met a couple of times since my last post and it never fails to inspire me. I am always amazed with the courage of the women surrounding me ...those around the table and everything they have overcome. The most remarkable, the one that I can not shake was at our last meeting. There were only 5 around the table but this one woman was new. I knew the evening would be different with her in our presence. She, the definition of strength, as she introduced herself and her reality she was going through chemotherapy.
Now I am not sure why this woman has hit me right to the core. In my profession, I deal with breast cancer patients everyday...in all stages including (unfortunately) those who at Stage 4 with no other resources available to them. This woman though just looked at me and said 'what the hell are you waiting for?? Do you want to end up like me" Tears stream down my face as I write these words even now...
I know I need to have the surgery ...and my vanity is the least to keep me from it...but if I was honest it is the fear of the unknown. The fear of what the results will be and even more so...the fear of pain and dealing with all that comes with a PBM.
I feel like a failure/or more blatant a word...a wus... for not being able to make up my mind quickly...
Most of me has decided to go through with the surgery and I almost feel like I am in morning right now. I have actually looked in the mirror and instead of my usual blah - ness for my breast as they were never a favorite part of my anatomy; I now look at them with love and think...this in their last summer in a bikini. I may actually miss them
The worst was calling a plastic surgeon this past week. When I explained to the woman on the other end that I was looking at retrieving information on a PBM I could not believe the response! I hear a strong 'tongue click' with an added sigh...no. I could not be hearing that on the other end of Mr. Bell could I???? Later on in the conversation as I maintained composure she asked me why the HELL I was doing this...when I explained my gene destiny there was another stern silence and well we can't help you until you speak to others. Basically I read between the lines on that one
I continue my research and continue with interviewing surgeons. I am hoping this is going to get easier.
The decision is hard..I continue with interviews
Wednesday, July 22, 2009
Wednesday, April 8, 2009
Sisterhood and getting off the cancer seesaw
It never ceases to amaze me the strength of women I meet. I speak with new women nearly every day who are either high risk and have (or waiting for results) BRCA or fighting cancer themselves. Every single woman’s experience is their own and individual but each story mirrors another in that it reflects strength and solidarity against the horrible existence called cancer.
I spoke with two women them morning on-line. One lives in the United States and one life only a few hours away. Their stories are heartening. One is 31, no children and one is mid 40's with children. Both are currently undergoing the expander process. I shared with them laughs as they answered patiently my questions of both of process and the ever feared pain. They are both doing well and quickly became a further extension of my sisterhood.
This sisterhood is one that no one chooses to be in but in such a short time it is one that I feel is such a tightly knit family that I would feel lost without it. Both of the women I spoke with today (as well as others) mentioned the relief of once the surgery was done. Image! To not have to worry about the dormant evil and if it will display itself it all its fury. That relief alone is an experience that can not be put into merger words.
During this time of searching for answer repeatedly there is never a lack of messages and outstretched arms for me to fall on. I do not have cancer and I could not do cancer so why ride the health see saw? Time to get off.
Sisterhood - the BRCA family. I feel blessed today.
I spoke with two women them morning on-line. One lives in the United States and one life only a few hours away. Their stories are heartening. One is 31, no children and one is mid 40's with children. Both are currently undergoing the expander process. I shared with them laughs as they answered patiently my questions of both of process and the ever feared pain. They are both doing well and quickly became a further extension of my sisterhood.
This sisterhood is one that no one chooses to be in but in such a short time it is one that I feel is such a tightly knit family that I would feel lost without it. Both of the women I spoke with today (as well as others) mentioned the relief of once the surgery was done. Image! To not have to worry about the dormant evil and if it will display itself it all its fury. That relief alone is an experience that can not be put into merger words.
During this time of searching for answer repeatedly there is never a lack of messages and outstretched arms for me to fall on. I do not have cancer and I could not do cancer so why ride the health see saw? Time to get off.
Sisterhood - the BRCA family. I feel blessed today.
Monday, April 6, 2009
Fear - an emotion of control
Fear. It is a feeling that we all have: that as human beings we feel.
The fear of having pain, of not being able to control pain. The fear of something going wrong. It is a 'feeling' that whether is based on fact or heart felt emotion it is one that alters the living experience.
I do not hide my fear, from my language or here as I write. I address it, analyze it and hopefully in the end work through it. My mind fluctuates currently between a very bad and a very good scenario - type of see saw if you will. On one hand I live through 'Eva's' experience, as it continually distorts and worsens. The digestion of this is difficult if not humanly impossible to not alter my view on having surgery if it is ultimately at the expense of health. Health is the reasoning for a mastectomy in the first place. If it ultimately it worsens qualities of life then why any individual would proceed down that pathway.
The brighter end of the seesaw has seen amazing results from surgery. My girlfriend's process has been in her words” painless". I saw her breasts this weekend and I say "sign me up!" After 3 children, I look pretty good, but I am all for perky!!!. The fear of unknowing, of seeing end results is dramatic for the human psyche.
The complete idiotic mind conversation I have had is "What would a man think of my body?” Why do I care?!?! The whole if a man truly loves me argument comes into play here...fear...
It doesn’t matter of you have a PhD or simply high school. Fear, if left to roam can unjustify the most justified means.
I further digest...
The fear of having pain, of not being able to control pain. The fear of something going wrong. It is a 'feeling' that whether is based on fact or heart felt emotion it is one that alters the living experience.
I do not hide my fear, from my language or here as I write. I address it, analyze it and hopefully in the end work through it. My mind fluctuates currently between a very bad and a very good scenario - type of see saw if you will. On one hand I live through 'Eva's' experience, as it continually distorts and worsens. The digestion of this is difficult if not humanly impossible to not alter my view on having surgery if it is ultimately at the expense of health. Health is the reasoning for a mastectomy in the first place. If it ultimately it worsens qualities of life then why any individual would proceed down that pathway.
The brighter end of the seesaw has seen amazing results from surgery. My girlfriend's process has been in her words” painless". I saw her breasts this weekend and I say "sign me up!" After 3 children, I look pretty good, but I am all for perky!!!. The fear of unknowing, of seeing end results is dramatic for the human psyche.
The complete idiotic mind conversation I have had is "What would a man think of my body?” Why do I care?!?! The whole if a man truly loves me argument comes into play here...fear...
It doesn’t matter of you have a PhD or simply high school. Fear, if left to roam can unjustify the most justified means.
I further digest...
Wednesday, March 25, 2009
I look for my strength through the fog
So much has happened...I left my blog to digest everything.
My goal here is not to set a prairie fire or god willing - to have a bitchfest online. In such a short amount of time I have chatted with dozens of women across the world on genetic status and their journey to discovering mental relief. It seems that most women choose surgery as the best way to deal with this "genetic destiny".
Many of you have inquired about 'Eva' Her situation has gone from bad to worse. It appears that after her losing one breast, she will after weeks of antibiotics and mental greivances, she will loose the other one. I can not focus on one bad story but as I make my decision to have the surgery, the sting of something gone so wrong is truly a mental hiccup that will take some time
I also write today knowing another BRCA 'sister' is probably just out of surgery now and I eagerly await to hear how she is doing and how her recovery will be.
My source of strength has been the new friendship of a young lady who has gone through the expander course. Her story is one that never involves the language of pain and gives those of us who are weak of heart (and stomach) the belief that FOOBS (fake bobs) can be great. I also thank all my “sisters” across the globe for sharing their pictures with me.
I can not lie, there have been tears - mostly of fear but there are days where I simply feel overwhelmed. I question my capacity to walk down a road I know I must go. I tell myself FOOBS look better than the ones I got! Perkiness after having children is always a bonus.
I know one thing for sure - I couldn't do cancer. I speak with women on a daily basis that are going through treatment. They are the truest definition of a hero.
My goal here is not to set a prairie fire or god willing - to have a bitchfest online. In such a short amount of time I have chatted with dozens of women across the world on genetic status and their journey to discovering mental relief. It seems that most women choose surgery as the best way to deal with this "genetic destiny".
Many of you have inquired about 'Eva' Her situation has gone from bad to worse. It appears that after her losing one breast, she will after weeks of antibiotics and mental greivances, she will loose the other one. I can not focus on one bad story but as I make my decision to have the surgery, the sting of something gone so wrong is truly a mental hiccup that will take some time
I also write today knowing another BRCA 'sister' is probably just out of surgery now and I eagerly await to hear how she is doing and how her recovery will be.
My source of strength has been the new friendship of a young lady who has gone through the expander course. Her story is one that never involves the language of pain and gives those of us who are weak of heart (and stomach) the belief that FOOBS (fake bobs) can be great. I also thank all my “sisters” across the globe for sharing their pictures with me.
I can not lie, there have been tears - mostly of fear but there are days where I simply feel overwhelmed. I question my capacity to walk down a road I know I must go. I tell myself FOOBS look better than the ones I got! Perkiness after having children is always a bonus.
I know one thing for sure - I couldn't do cancer. I speak with women on a daily basis that are going through treatment. They are the truest definition of a hero.
Friday, February 6, 2009
a retrospective week
Having a genetic mutation, whatever the gene may be, is a weird existence. It is like the angel and devil characters on your shoulder, and the battle of who has a louder voice on certain days
Some days you feel empowered and that there is an inner strength that other non-carriers just don’t have. It is on these days I could have a patch sewn on my chest in blinking lights “BRCA Positive and Proud!” Look at me I could scream - I am brave and I shall conquer!
Then there are days that I wish I didn’t know of this sleeping giant. This thought of a metaphoric fight of ‘good and bad cells’ within in me wreaks havoc with my imagination. I recognize the power of the mind is one that can not be dismissed. I know all that, my inner voice screams it but this week my heart is the one that reigned.
My 'friend' Eva (I wish to be respectful of this persons privacy) at the young age of 32 recently underwent a preventative double mastectomy. I view this woman, like all women who have made this choice, courageous beyond any printed words I can add numerous adjectives to. She opted, after careful consideration, for the new "all in one" process that completes the reconstructive process immediately. I am not up on medical procedures but this process has apparently been used frequently in the States and the UK. After 5 1/2 hours of surgery the results according to doctors and nurses were incredible. Unfortunately the pain for Eva was just as incredible and it was heart retching to hear her using descriptors as torture for her existence.
Weeks went by and the healing was slow and the pain was unrelenting. Now I am all about looking at the world "glass half full" You really don't get anywhere in the world with a negative attitude. It was hard though for me not to parallel my own existence and decision making process with what I was hearing from Eva.
Unfortunately it only got worse, and one of Eva's breasts got infected...and well...to make a long story short (or is it too late?) she turned septic and had to have one of her newly reconstructed breasts removed this week.
I have never felt so helpless ...so frustrated and …well afraid. To go through all what she had and to have this set back. I recognize it will all be fine in the end...though she now has a long journey ahead of her...it was hard for me to not equate this journey as my own. I have had many of my other friends go through the process with no hiccups and I try to focus on those.
This is where I truly start my own mental journey to the operating room.
Some days you feel empowered and that there is an inner strength that other non-carriers just don’t have. It is on these days I could have a patch sewn on my chest in blinking lights “BRCA Positive and Proud!” Look at me I could scream - I am brave and I shall conquer!
Then there are days that I wish I didn’t know of this sleeping giant. This thought of a metaphoric fight of ‘good and bad cells’ within in me wreaks havoc with my imagination. I recognize the power of the mind is one that can not be dismissed. I know all that, my inner voice screams it but this week my heart is the one that reigned.
My 'friend' Eva (I wish to be respectful of this persons privacy) at the young age of 32 recently underwent a preventative double mastectomy. I view this woman, like all women who have made this choice, courageous beyond any printed words I can add numerous adjectives to. She opted, after careful consideration, for the new "all in one" process that completes the reconstructive process immediately. I am not up on medical procedures but this process has apparently been used frequently in the States and the UK. After 5 1/2 hours of surgery the results according to doctors and nurses were incredible. Unfortunately the pain for Eva was just as incredible and it was heart retching to hear her using descriptors as torture for her existence.
Weeks went by and the healing was slow and the pain was unrelenting. Now I am all about looking at the world "glass half full" You really don't get anywhere in the world with a negative attitude. It was hard though for me not to parallel my own existence and decision making process with what I was hearing from Eva.
Unfortunately it only got worse, and one of Eva's breasts got infected...and well...to make a long story short (or is it too late?) she turned septic and had to have one of her newly reconstructed breasts removed this week.
I have never felt so helpless ...so frustrated and …well afraid. To go through all what she had and to have this set back. I recognize it will all be fine in the end...though she now has a long journey ahead of her...it was hard for me to not equate this journey as my own. I have had many of my other friends go through the process with no hiccups and I try to focus on those.
This is where I truly start my own mental journey to the operating room.
Monday, January 26, 2009
The begining of empowerment
Well this is it -The Intro.
I am a local Ottawa woman who's personal and professional journey has taken years to process what having this gene means. Now, with physicians and geneticists more savvy with this 'sentence' I believe women and men are becoming more aware of what all this means.
Having said that, there is still a gap I have identified a in our system that has yet to be filled.
This hole and a large one at that, is one that I have been working on filling. No women or man should have to navigate our system blindly. This journey is one that can only to be travelled at the speed one feels comfortable with. Once ready to absorb information, someone else's journey can assist another in ways that surpass any words I can put on a page.
Today was an incredible step towards creating such a program in the Ottawa area. I received a call first thing this morning from 'THE" Dr. Verma and he was excited as I to start such a support system. Sentiment of the similar sort I have heard mirrored from the Woman's Breast Health Centre.
As I work towards making this dream a reality (please allow me this small cliché) I would like to share the journey as I have worked and learned through it. As I mentioned I have 3 girls but I also have 3 sisters, 2 which have also been diagnosed with the gene as well.
I write with all of them in mind as well as my nieces and fellow BRCA sisters in mind. Let's together create the map of empowerment.
I am a local Ottawa woman who's personal and professional journey has taken years to process what having this gene means. Now, with physicians and geneticists more savvy with this 'sentence' I believe women and men are becoming more aware of what all this means.
Having said that, there is still a gap I have identified a in our system that has yet to be filled.
This hole and a large one at that, is one that I have been working on filling. No women or man should have to navigate our system blindly. This journey is one that can only to be travelled at the speed one feels comfortable with. Once ready to absorb information, someone else's journey can assist another in ways that surpass any words I can put on a page.
Today was an incredible step towards creating such a program in the Ottawa area. I received a call first thing this morning from 'THE" Dr. Verma and he was excited as I to start such a support system. Sentiment of the similar sort I have heard mirrored from the Woman's Breast Health Centre.
As I work towards making this dream a reality (please allow me this small cliché) I would like to share the journey as I have worked and learned through it. As I mentioned I have 3 girls but I also have 3 sisters, 2 which have also been diagnosed with the gene as well.
I write with all of them in mind as well as my nieces and fellow BRCA sisters in mind. Let's together create the map of empowerment.
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