Wednesday, December 9, 2009

this is the hard part

December - the month of festivities, parties and well some serious cutting loose. I feel very lucky to have the number of friends that I do. I am constantly surrounded by love and support and that alone is a blessing. I, most recently, yet most significantly, am surrounded by my BRCA sisterhood - a group of women like me who stare cancer in the face and say "not me". I also have the Ottawa HBOC group which support and surround me with a love and support that I have not felt in years. A true blessing

its all about the holidays...

But this month is different

I cried tonight. A gut releasing cry. My daughter approached me with tears at the dining table; afraid... she afraid of what was going to happen to mommy. I cried and held her as we both opened our souls to the pain we so desperately hide during this very trying time. I do not doubt that many women facing a mastectomy have felt this secret pain. I assured her that mommy would be fine. It may not be fun for a period of time but in the end I will be there for her to watch her graduate, be there when she has babies of her own. I told her cancer was not welcome in our home so this is what I was willing to do to make that happen

It is an incredibly hard time right now. I hear that alot from other women who have been here. I am four weeks before surgery. I often sit and say this is my last X with my last last last cookie gets to be a joke at a point but utterly consuming and draining.

I don't have cancer but tonight I feel that it entered my home. My girls are scared. I am scared. This is the hard part... the waiting. I have taken a step back from almost everything and everyone - except for those people who I know can only feed positive messages back to me. I have, for the first time in 15-20 years decided to be selfish. A very foreign thought for me, uncomfortable at many a time...though many BRCA sisters and encourages me to be so. I can not handle anything negative or or conflict at this point.

This 'zone' of where my head lies was completely unexpected. I am living right now as a women with cancer on her shoulder because I do feel it breathing down my neck. I feel that darkness and insecurity that I can only imagine women facing treatments and the unknown ahead. This has however has offered me a light that I believe is a gift... I have removed those in my life who are selfish, learned that the past, although haunting is not that kind, and that the future is where I need to focus. That would be me - healthy - standing beside my family. a gift that sees and appreciates life as a gift.

The BRCA sisterhood has showed that so many women have faced many difficulties, some more than I could bear and that no matter what my future holds, the pain, the blood, the uncertainty, the fact is that I will live. Live with my daughters beside me. No one, no man, no selfish being can take that from me.

It is good that over the next month that I have alot to keep me busy - wrapping up work, Christmas, and FLORIDA. I am heading to have a crazy time in FT. Lauderdale with a girlfriend of mine. Run away and just forget what lies ahead.

I have to keep my sanity. Might as well have fun doing it.

Pray for me.

Tuesday, November 24, 2009

Phone rang and all was set

I knew the day would come.  I even hoped it would come, surprisingly, but still it sat like lead in my stomach. 

The call came today.  January 8th.  The day I lose my breasts.  Wow, writing it is yucky? final? Not very profound is it.  This weekend, as you probably read I hit rock bottom.  I completely lost it but at least it was with end purpose.  Somedays I

I saw a woman die. Her lifeless body is forever etched in my mind.  it serves as a remeber of why I am having this surgery. I saw what cancer does inside a home, using stress fatigue and fear to eat away at ones soul  I will not do that to my family. 

The hard part was telling them tonight.  They cried. I cried with them but assured in the end we would get though this.  We were beating cancer before it had a chance to rear its ugly head

I know it won't be easy, and I still think I'm in for a hell of a ride, no matter how much I prepare or think I know.  I think about Eva in the back of my mind who is now is breastless again .  I hope (dear God) I do not end that way. After this weekend though I do not doubt my decision. 

I have a picture of one of my BRCA's sister's new foobs on my bullentin board and well heck- they look awesome!  I use that and the possibility of some other enhancement once full exchange is done...hint...

So I guess I have nothing except I am surprisingly at peace for now and let the 43 day countdown begin.

Sunday, November 22, 2009

The night reality came crashing in

Have you ever been angry? I mean really really angry? So upset you couldn’t breathe? I did that tonight. I cried. I scream. I yelled. I lost my breath in tears and fear. My emotions flooded uncontrollably into consciousness as reality hit and hit hard.

I attended a film festival tonight surround by heroic stories, women of courageous character. I myself was surrounded by many bald heads who share a common story in the plush red seats we sat in.  Breast cancer

My soul will be forever marked as I watched Stage IV- A Journey into the Unknown  A film that will forever change my life and brought me to my space tonight. This documentary was the story if a  women’s fight with breast cancer. Anne was an incredibly positive being. Fit, young, active, optimistic and yet as the minutes pasted in the film, which in real life was actually weeks and months, cancer kept taking a larger part of her. First her breasts. Then her liver.

Like me, one of her largest struggles was with how her child would deal with this. She remained positive, attacked cancer with every treatment and alternative method she could muster. Every P.E.T scan she remained positive and just said “Well I need more time to find what will kick this” as the diagnoses and medical reports came back continually on a negative note. Chemo was not working

In the end cancer won. I watched her die in the most horrible painful way. This very smiley woman could no longer find anything positive to say because she was in so much pain.

The film was life changing for me. The monster, my boogie man, imbedding itself slowly into her family’s life. Her son found his mom’s disease hard to comprehend. The stress on the marriage was also demonstrated. The constant challenge of her inner sprit. She demonstrated such strength. Such strength I do not believe I have. As I watched her family struggle I knew I did not want to put my family through such duress if i could prevent it.

The most notable scene was where the doctor basically said there were no more options, no more treatments available and she was given 6 months...

She lived 5.

She died at home which the film annimated clearly. Her lifeless body is embedded into my memory for life.

I am beside myself tonight with tears and an overwhelming fear as I say goodbye to my breasts.

I have never been so scared in all my life.

God and the angels be with you Ann

God help me and give me strength to get through what I know I must do.

Wednesday, November 18, 2009

BRCA Sisterhood

Wow - what a day!!

As I mentioned before I have come across some incredible ladies during my journey over the past year. I introduced myself to Facebook just a little over a year ago and I have met dozens of everyday heroes. Women who have seen cancer, women who have felt cancer and women , as BRCA carriers themselves who provide support to other previvors, as we struggle throughout our decisions and experiences.
The BRCA Sisterhood, which is a name we now call ourselves has been mobilized. The world changed today and shifted to action. We, dozens of women from Canada, to the Unites States and the United Kingdom joined as a power of one to get the word out. The word being we are fighters and we will not wait for the 'boogie man' inside us to take us. We are taking control of our lives and our destinies.

We have mobilized our words into action and have sent dozens of individual letters to Oprah to share in the vision that women like us have choices. More importantly they do not have to be afraid. They/We are not alone. We are a sisterhood that loves one another and supports our decisions and tears while facing this genetic destiny.

My letter to Oprah is as follows.

I sat there in disbelief. I cried then walked away. I wasdiagnosed with the BRCA gene. Once handed your fate you feel like you are put in a dark room, alone, with the door closed. There you wait, in the dark, wait for the monster called cancer to arrive. I am 36 years of age and diagnosed with BRCA2 ten years ago. I was one of the first women in my city to be diagnosed with such a genetic destiny and to this day there exists very little support and knowledge surrounding the issue. When faced with my mastectomy decision I had to ask “who am I? Who did I want to be?” I want to be the woman who is around to hug her children, be there when they cry over boyfriends, be there to take them out for shopping sprees, to be there when they have children of their own. But most importantly I just want to be there. Surgery, here I come. Ready or not. I often receive the question why not wait and see if you get cancer? The impression that breast cancer is somehow the "good cancer" to get befuddles me. Have we really sanitized the disease so much with all the pink ribbons and smiling bald ladies in ads that breast cancer has just become a woman's right of passage? Breast cancer changes lives. And breast cancer ends lives. I'm not sure why we've forgotten (willfully ignored?) this inconvenient truth. And unless I missed the headlines, there still is no cure for cancer. As a mother of 3 daughters, I want to lead by example, show them they can own who they are and control their own destiny. My mastectomy is about taking control, and not the disease controlling me. I am not waiting for the monster to arrive. So that no other woman felt as alone as I did, I took action and started my own support group. Only connections like sisters know what horrible decisions we face like hysterectomies and mastectomies. We are a powerful group of women who chat to strangers but frequently extend I love you over the internet because we truly do.

We are the BRCA Sisterhood.



Thursday, November 12, 2009

Telling the girls

We sat aroound the table - as usual. Rare for some families but every night my girls and I sit around the dining room table (yes every night in the dining room) and talk. My dining room is not the forbidden room but the place to gather and share. Surrounded by candlelight we eat every night. We all take a deep breath and just talk.

I decided, with all that is going on, it was time to tell them. I knew this time would eventually come. I did not expect so soon but my mind has slowly become saturated with my journey toward the operating room which is less than 2 months away.

So, I decided tonight was as good of a night as any. The conference I went to this past weekend there was much discussion surrounding family information sharing and best methods. The key was that I needed to keep an open dialogue with them. My girls and I are all close with no secrets between us. My oldest tells me about the boys she like, she girls she doesn't and she is developing. Hard to hear but glad I am the mom that she feel comfortable with sharing her stories and feelings with.
The conversation went surprisingly smooth...two of my girls, 9 and 7 took it in stride..though I am sure they did not fully digest the severity of the situation. I kept the gore and the details to as much of a minimum as I could. I would need help. I would be in some pain but in the end I would be okay. My reasoning was simple. I could get cancer. I did not want cancer. I did not want to get sick with cancer. I wanted to always be there for them. That is why I needed to do this. I was doing it for them.

My 12 year old sat there - quiet. I am not sure how she took it but hugged me and I reassured her I was there to answer any questions she might have - now or later.

In a weird but good way they digested and paralleled this experience to when I busted up my ribs REALLY bad a few years ago. Unable to breathe, walk, exist really.
So fair enough. It was a good comparison.

As many who have gone before me and those who will have this journey to travel behind me our kids are the heaviest weight we bear. We try to shelter them. My original plan was not to tell them until they were 18 (or there about)...but Eva's situation has broken any silence wide open.

I do not want them to hate their bodies; their developing bodies at that. I hope now, with a new plan I can at least deliver information and support so that the boogie man inside does not win...on any level. At any age.

My path , my journey hopefully will pave a road smoother than the one I have had to travelled.

Wednesday, November 11, 2009

TOP 10 List

Statistics have been a critical part of my decision making process. I have over an 80 percent chance of getting breast cancer. Not good odds. I have spoken to several dozen women who had the same surgery that I will undergo with minimal complications. I try to rationalize my fear away. I do have to go in expecting complications because it would be irrational to do so. I try to be brave but the tears still come.

One part of this journey I did not expect is the continual support from women all across the world and right here in Ottawa who share the same plight. We blog, we facebook, we continually search each other out and we truly feel were are sisters and refer to each other as such.

One of the many women I speak to has drawn up a 'Top 10" list that I had to share because it resonated with me so deeply. I made some minor adjustment to speak to my experience but the heart of this derives Steph H and her blog "Good bye to Boobs"

Top Ten Things Young Previvors (Probably) Don't Want to Hear

10) But you're so young!
Well, I'm not 29 anymore...but I still people I am with a coy smirk but all that is beside the point. Young women do get breast cancer, and young women with the breast cancer gene, especially, get breast cancer. In fact, recent studies suggest that women with BRCA mutations are getting sick an average of six years earlier than the previous generation. So we're never to young to get breast cancer.

9) Well, if you get breast cancer, at least it's curable.
This impression that breast cancer is somehow the "good cancer" to get befuddles me. Have we really sanitized the disease so much with all the pink ribbons and smiling bald ladies in ads that breast cancer has just become a woman's right of passage? Breast cancer changes lives. And breast cancer ends lives. I'm not sure why we've forgotten (willfully ignored?) this inconvenient truth. And unless I missed the headlines, there still is no cure for cancer. What's more, women with BRCA mutations who have had breast cancer have a 40% chance of recurrence and an elevated risk of developing second primary cancers. In other words, breast cancer isn't like chicken pox, folks. You don't get it once and are immune to it forever.

8) You're removing healthy body parts that may never develop cancer. That's crazy.
To you, maybe. But to me, it's the opposite of crazy. It's totally sane and rational. I have a nearly 90% chance of getting a disease I know I can prevent if I have this surgery. What's crazier, getting it when you didn't have to or not getting it because you had surgery? I'm going to go with what's behind door number two, Monty.

7) So wait. If I was told I had the brain cancer gene, I'd have to remove my brain?
Are you sure you haven't already? No. You would not remove your brain. Because you need it to live. I am removing my breasts because I can live (both figuratively and literally) without them.

6) That's not what I would do.
You are free to think that, but I don't want to hear it. Truthfully, you-imaginary-person-who-doesn't-have-the-BRCA-mutation, I don't really care what you would do. Because you don't know what it feels like to be me. So zip it.

5) What if you have the surgery and then die of something else?
Well, that's the point right? Not to die of breast cancer? I don't know how long I've got, but I'd like to spend my time here without breast cancer.

4) Look on the bright side, you're getting a free boob job!
Reconstruction does not equal a boob job, folks.Facing yourself in the mirror with new body parts is not a big love -in fest. Enough said.

3) I always hated my boobs. You're lucky to be getting rid of them.
I know lots of women out there have vexed relationships with their bodies, and there are parts of mine that I hate. My boobs myself are not one of my favourite but they are mine. I laugh because I have receive compliments from men who love them and thought they were beautiful too! So when I see these womanly mounds on my body, I do a silent little touch-down celebration. So, no, I'm not lucky to be getting rid of them. I'm lucky for the time I had with them.

2) You should do [insert healthy lifestyle choice].
I hear that helps prevent breast cancer.Well, if we knew how to prevent it, no one would get it, right? I hate to be so pessimistic, but, especially in women with BRCA mutations, all of this healthy-lifestyle-doing-yoga-drinking-green-tea-taking-vitamins seems like titling at windmills to me. But, I'll play along. So, to prevent cancer I need to be healthy. But I already am. Healthy and concious diet? Check. Pilates? Check. Non-smoker? Check. I'm doing all I can here, folks. I'm staring down a 9 in 10 chance of getting breast cancer. I wonder really what difference it makes if I forgo that Diet Coke or glass of red wine.

1) Don't do anything drastic yet. There will be a cure soon.
I sincerely hope you are right. And I sincerely hope that in five, ten, twenty years, prophylactic mastectomies for high-risk women will seem as draconian as blood letting. I have three girls who I have deeper hopes of choices then mine are right now.But I'm not going to stand around idly and wait for miraculous medical advances. I'm doing the best with the technology and understanding we currently have.

Top Ten Things Young Previvors (Probably) Want to Hear

10) Is there anything I can do? Do you need a ride anywhere? Wanna grab a drink?

9) I'll be there for you.

8) Good for you for doing what's right for you.

7) I don't want you to get breast cancer, either.

6) I don't know what it must feel like to be going through what you are going through, but I know it sucks.

5) Talk to me. I'm here to listen.

4) When you are recovering from surgery, I'll come over and watch DVDs with you, wash your hair, and bring you junk food and wine

3) You are brave.

2) You are strong.

1) You will still be beautiful.

Tuesday, November 10, 2009

The question

So who am I? I sit in the Edmonton Airport and realize that was the question this weekend. Or maybe even more importantly who do I want to be. My story as it has been narrated so far is a very personal one. This past weekend I however traveled west to Edmonton for both personal and professional reasons. Ironically, I work in the breast cancer ‘world’ mostly in a fundraising capacity but more recently in the Public and Media Relations realm. Yes, not surprisingly some days I wish I had a cape and a special power to face the day. ‘Frustrating?’ some ask. Some days are but when you have a woman come into the office and give you a hug because you gave her strength during her treatments... (sigh); the stress and the long hours are worth the warmth and spirituality of those moments. I tried to leave the not for profit world at one point because of the high stress demands of but came back simply for the reason that I missed it. My career is now nearly 15 years long and I truly want to make a difference and a mark against the beast we know as cancer. Typical Type A personality.

I took a deep breath this morning and felt better. I am able to step back with perspective now. The conference this weekend was unlike others. It ingrained a theme of what cancer takes away our friends and family. If you beat the C monster...the women frequently state mental and physical scars from the poisons of chemotherapy. No one can deny that this demon changes you and all those around you. I laugh as there was there typical ‘show and tell’ after the business dinner of those women who have undergone reconstruction. I have to say they were some of the nicest breasts I have seen. One of the women had undergone a TRAM flap. This is where they use tissue from the abdomen to reconstruct the breast. Well damn – I was not convinced she had reconstruction! That evening my facebook page read “I must be the envy of all men in the world today as I saw 4 pairs of bare breasts!” I received alot of thumbs up on that one – all from women.

As I sat there at the conference and heard stories that made me cry and hugged women who gave me hope; in the end realized that no matter how hard this will be – and that it will be – it solidified my decision of surgery.
My story has decided to get a little more intricate unfortunately. With all the complications that ‘Eva’ has endured I have decided to do some research and called a few people in the ‘Cancer World’. I have that luxury so I felt this was going to be one of the few times I use it. Dr. Shail Verma was the top of my list...a true modern day legend. I discussed Eva’s situation and he did express concern. He mentioned that my fate might very well be the same... (choke) as Eva and I are family... (yes I recognize I have hidden that fact) and the only thing I can do that MIGHT help is a treatment of antibiotics before I head to the OR. The risk is high that I too will fall to infection but if I focus on that then I can’t move, breathe nor think.

So who do I want to be? I want to be the woman who is around to hug her children, be there when they cry over boyfriends, be there to take them out to lunch after shopping sprees together, to be there when they have children of their own.

But most importantly I just want to be there.

Surgery, here I come. Ready or not.

Saturday, November 7, 2009

The boogie man...

I wrote this a couple of days ago. I was so upset that I had to walk away from it until I was ready...


I crumbled.

When the phone call came I knew something was wrong. I was in my office and the voice on the other end could not be speaking the words I thought I heard.

“‘Eva’ is back in the hospital. She is heading to O.R. She has another infection. The implants need to come out”

WHAT?? I’m sorry WHAT?

No. This could not be happening. My tears flowed. She has been through so much already. She was to be the success story demonstrate that the road ,although long and difficult, will all but be wrapped in a neat bow at the end...right? That is how it ends!? No- the ending is with Prince Charming and perky breasts. I recognize that I should not digest this into my own reality but how can I not? I have eagerly listened to countless success stories but when one with such a downbeat outcome hits so close to home practical thinking does not always follow suit.

For the last couple of weeks I have been on a mental journey that was completely unexpected. Sleeping through the nights is proving increasingly difficult. You don’t read about this is self help pamphlets, or in medical journals, and definitely not covered by the many socio-oncologists articles that they brag about. I am overwhelmed with the reality that after all is said and done, after all my surgeries and pain and months of recuperation...after all that... I will not be able to look in the mirror and not feel regret. That I will look at myself and feel deformed. I tell remind myself repeatedly why I’m doing this. I have spoken to dozens of women across the world and even nurses who administer chemotherapy think I should not hesitate for a second to have the surgery.

Chemotherapy is nasty. That is a black and white reality that bears a long history of heart retching, life altering stories. My story is not one I wish to add to that novel. My head know that and THAT is my ‘button’ that makes me continue to the January date.

My hearts, my vanity, damn them both! Living without breasts was not a risk that I put in the mentally equation. That might be Eva’s reality.
I have been asked today “What if you don’t have your surgery in January?” I sighed heavily and internally I answered “I’m on a train that I don’t believe I can get off. The sleepless nights where I lie awake and think of all the ‘what if ‘scenarios...I picture myself with my new foobs...hell I’m even losing hair with the cumulative stress of it all! I am down this far, I can’t go back...not out of pride but the darkness behind me...the ‘boogie man’ called cancer still seems to be waiting...not in my closet but in my body

‘Eva’...Her story is supposed to end better than this...

Don’t we all deserve the happy ending if we go to such lengths to avoid the boogie man called cancer?

Monday, October 26, 2009

no warm and fuzzies..

So it is actually official. I met the plastic sugeon and now I wait for the call for the date. WHEN. Did I just say that??- wow.

Professional opinion was correct - she was not warm and fuzzy. I would even call her cold. But I need to ask myself would rather someone who knows how to put me together all pretty and perky or have someone who gives a warm fuzzy hugs?

What has bothered me this evening is that I feel I have missed something. Was I to ask mre quesyions? was she to intereact with me more? Was she to engage in more conversation about options and results? She asked me questions, had me disrobe, took some pictures and well thats it! Maybe I have researched alot..or maybe not enough as I did not have alot of questions or much grey area in my head. It has taken me 9 years to gt to where I am today so decision has been made.

When I asked my 3 questions, there was no conversation.

I mentioned I wanted a thoracic block. This is very imporatnt to me and quite non-negotiable. it is like an epidural but higher and it delivered through many needles injected in this upper back area. I have heard will significantky lower but pain and discomfort for the first 24 hours. She sighed and mentioned that it add another half hour to the session (I thought I heard a sigh)

I asked her if I needed to decide on the type of implant at this point. She said no but wondered really if there was any discussions to be had as there (in her mind) was only one she would reccommend.

I asked her to see pictures and well...they were black and white photocopies..and the end of 'it as I stood there looking at the album she commented in my direction don't you fret you will look tremendous" then had me sign my breasts away on a blue paper.

Weird experience to sign a piece of your body on blue 8.5 by 11.

Now it is a waiting game.

Sunday, October 25, 2009

Spaghettis straps and bikinis will have a new meaning when all is said and done

I am in a quiet retrospective state tonight. Tomorrow I meet with Dr. "R" to discuss procedures on reconstruction of my new breasts. I have decided on expanders.

This procedure inserts an'expander' in the chest wall and over several weeks (and months) I will go for a 'fill'. As my girlfriend Liane explains so well - like when we are preganant, my body will grow and expand until the final stage where I will undergo a second operation. This 'exchange' surgery is where I will receive my silicone implants that will last for about 15 years or so. But hey - how many women can say they choose they breast size!

I have been on a roller coaster of emotions over the last few days. Many tears have been shed I can not lie. I have been speaking with women on line, reading dozens of websites and blogs..all in hopes to find peace..The reality is I need to find it inside myself - with myself...

I also want to be prepared for tomorrow; make it constructive as I am unsure if I will get the opportunity again to speak with her. I need to walk away not only informed with all my questions answered but feeling comfortable with the 'plan'. I have heard Dr. "R" does not have much of a bed side manner, but my decision for my surgeons has been based on skill, not personality. I interviewed the nurses and professionals who work in the industry (like me) as to who they would reccomend. That has simply been my choice and my comfort level. Everyone is different. I want to feel confident in their ability and at the end of it all the best breast OHIP can buy! ;o) heck there is something to be said for never wearing a bra again. Spaghettis straps and bikinis will have a new meaning when all is said and done.

But I need to be prepared to all possible complications - even death. Eva is still in pain which has sat like lead in my soul and with the dozen of women I have spoken with, no two expereinces have been the same so I can not pressume my recovery will be like one or another.

At the end of this though...I hope I can make a difference in lives of women who must travel down this path.

I enocourage those who read my blog to share it with those who may or may not be high risk. This can be a lonely road if traveled with out direction.

Information is power but support is everything. I hope I can help draw the map for those behind me.

Thursday, October 22, 2009

The decision made...

I have taken some quiet time over the summer to think, to truly understand where I wanted and needed to be in order to be happy. To know my decision is the right one for me. I am in an uncomfortable zone as I am not used to putting my needs first. My kids, my family, my work..they have always come before me. Now I have to put myself before all of them. I know in my head that this is the one time that is justified to be selfish but a very foreign feeling and I know all moms out there can be empathetic to this. I know this has to be about me and no one else.

Additionally, it is incredibly difficult to make a decision without feeling the pressure of the BRCA community around me...a group of amazing women that I brought together. I envy these women..these women so bold, so fearless to choose surgery without hesistation. I am the only one who has not jumped on the surgery bandwagon and I can not help but feel like a bit of an outsider.

Last week I went to a BRCA conference in Montreal...truly empowering and cutting edge information. I went to the conference with a business mind as I am determined to bring a new source of support to women who carry this genetic destiny. By the end of the conference I had less of a buisness mind and had my heart hanging out on my sleeve. I knew what I needed to do – at least in my head. I must have the mastectomy. I can not leave my children without a mother. I can not fight the cancer fight in a selfish manner..thinking that if I had to undergo chemo therapy and radiation I can pressume my family, friends etc can pick up the pieces around and all will be fine and pretty at the end of the dark tunnel. Worse still I can not presume that in the end I will win that battle.

So I made the HUGE step and I met with the surgeon, “Dr. L “ last week. I am a firm believer in fate and that life sometimes throws you a lesson you did not except to just show you if the path you are travelling is one that you need to continue on or your journey is one that needs to be readjusted.

As I sat in the conference room surrounded by the pink and green walls (God love the 80`s) I still sat there and pondered if I truly am ready. I waited and waited impatiently...My type A personally quickly ventured to ``my meter might run out and geez I might get a ticket ..arg...I shouldn`t be here" ... As my frustration rose ...I watched the door across the hall opened. A man came out of the door. A man that I will never forget for the rest of my life (my eyes create puddles as my thoughts go back to that day). I watched as his eyes rose to the ceiling, and watched as he fought back his tears . He buried his face in his hands as he hid the sounds of sobbing from his wife behind the door and the room he just left.

As a witnessed someone life change forever in front of me...I knew that no matter how difficult this journey is I can NOT play Russian roulette with cancer . She is a demon that I am not convinced can always be found in early stages. She is smart and sly and even if you beat her the first time...there is no telling what she is capable of if she chooses to come back for revenge.

I meet my plastic surgeon on Monday...and I am word can relay on this blog how truly frightened I am.

I fight back my fears and tears tonight as I am vividly aware of `Eva` as well as a girlfriend lie in agonizing pain tonight. Eva has gone back after months of hell to try expanders... I am so very worried after all she has been though. Another GF of mine is done and had her exchange surgery today. She just posted on FB she is in agony and back on drains too. SIGH
I am not convinced I am strong enough to do this..

Have you ever done something that you didn`t want to do but knew was for the best??

I am about to cut off my breasts to save my life....God help me..God help me find strength.

Wednesday, July 22, 2009

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 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 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, 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.

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...

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.

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 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 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 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.