Support?

So yes, some days are harder than others...today was hard. Today was the day I was fed up, done and frustrated. I was, at least, after talking with other women, expecting days like this. I accept them for what it is, and know that tomorrow is another day.


Today I just want to feel ‘normal’. I have to stay inside because going for a walk is too uncomfortable. I want to sleep through a night. I want the pain to go away long enough so I can rest. With three kids at home the floors scream sweep me, the laundry room builds up...the hardest part of recovery is the staying put.

I was, as I said, expecting days like this. What I was not expecting was the lack of support I received from certain people. Difficult times bring out the best – and the worst- of people. I expected a couple of people to write or call and yet they remain quiet. On the other side there are others who have completely surprised me and come by with food, and make the effort to call with messages of love and support. In some instances it has been difficult but I thought I would share this with you because it can surprise you to experience the ‘abandonment’ from those you least expect. At the same time it can be seen as an opportunity to evolve as a person as envelop those who do care.

I want others to benefit from my experience and hence why I started this blog. I received wise words from a fellow BRCA sister that I think sums up the attitude I now have adopted.

"Unfortunately, it can be as painful as the recovery, to see who really and truly cares and "has your back." It really made me re -evaluate the level and trust of some friendships. Some people surprise you in wonderful ways, but others are disappointments. From this process, I actually became better about not obsessing over the ones that let me down (although that is a work in progress!), and really caring that much deeper about those people who are sincerely kind and react in similar ways to how I would have for them. Hang in there, and do not let yourself be distracted by the ones who aren't there, be glad you learned.”

I knew this experience would change me, I just had no idea the extent or depth that it would.

DONE!

He blanket lesson and statement that I can claim and own is that the FEAR of surgery was so much greater than surgery itself.


Here I am breastless and happy – and pain free. The worst complication I have had this past week was actually with my pain medications.... so where do I begin?

Friday, January 8th – the morning of the surgery. I was scared, and as I arrived at 6:30 for my 8 am surgery I sat there and knew my life would never be the same. There was never a doubt in my mind though and I knew I was doing the right thing. I found comfort in that simple fact. I was pleased that my conscious had reached this level of acceptance. I can not stress enough to anyone reading this , if you yourself are contemplating surgery or even genetic testing, you need to be ready for it - on your own time, your own agenda. One of my wonderful members of my support group said to me once “The worst thing you can do is have surgery when you are not ready. You may end up with regret. More importantly you will not be able to deal with possible complications” Words that I remember and pass on to you that I hope assists others on their journey.

The biggest hiccup was 7:55am -...5 minutes to surgery as I sat outside the O.R. One of my biggest of not the most important wishes I had throughout was a thoracic block. This procedure was something I advocated for for a number of months including discussions with my plastic surgeon, general surgeon, and an interview with an anaesthesiologist. They all told me that the bock would not be an issue. Well with the clock ticking down I had to fight and beg and stop surgery for the procedure. The reasoning I was told that the risk was too high for a bilateral mastectomy. My reasoning was simple – pain management. There is a clear line in my experience that can be drawn between those who have the block and those who do not. The level of pain experience by those who have had the block is much lower. My pain was minimal and already I am not on anything except for Advil at night.

The weight, the dread, wow – the minute I woke up was all gone. The nurses kept referring to me ‘Sleeping Beauty’ - it took me forever to wake...6 hours. Finally they poked me a few times and said they either admit me or shake me up a bit. A trip to the bathroom and ginger ale shook me enough, that in addition to the wish to get home back to bed. The trip home, like many will say, very long and uncomfortable...

But here I am – done. Thrilled!

The time has come

Here it is. A year of blogging knowing that this week would eventually come


I am glad I had the holidays to keep my mind busy. Lots of family, lots of parties. It was a great holiday. I also treated myself to a girl’s weekend away to Fort Lauderdale. What can I say except lots of shopping and some of the best restaurants ever!

Now I need to get ready for the hardest week ever. Surgery is less than a week away. It has been hard to not repeat the sentence “this is the last time I will be doing X with my breasts..” That may sound weird to those not in my shoes but apparently many of the women I have spoken to it is very common. Today for example this will be my last Saturday....

I do have to say I am just amazed at the continued support from those around me. Not only from close family and friends, but even people, ex-boyfriends, old high school people I have not spoken to, and even complete strangers have messaged me and offered some of the kindest words. Yes, not all are as supportive or understanding, but like a breast cancer survivor you figure out quite quickly who your friends are and often become closer with many. It is truly a humbling experience to have people reference you as brave, or even a hero. I simply see myself as making a choice that does not allow cancer into my home.

As confident as am in my decision my heart sunk a bit as the clock struck midnight, as I hugged my friends, kissed my children...knowing January was here.

I have things to buy, a bag to pack, and positive thoughts to keep... 

This week...yes...it will be trying.

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 breasts...my last holiday...my last essay...my last cookie making...it 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.

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.

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.

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.

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