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 quite..um... 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 well...how 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 does...it 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 ...to 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?