Tuesday, May 14, 2013

The Day Mastectomies Became Hip




Hi Everyone,

I hadn´t intended to write a blog entry as I was busy being firmly camped on the island of self misery this week. After a week of sheer hell last week, I unfortunately caught a nasty cold from my little monkey and am busy blowing my nose every minute and feeling downright lousy. It makes me so angry as this is the one week that I am supposed to feel okay. Next week it will already be time for the next treatment and I am terrified. So you can understand my frustration at having my "free week" robbed from me due to my non existent immune system. Looks like the freaky outbreak-esque masks didn´t quite work. :(

But onto the main point behind this blog. I received many messages about Angelina Jolie´s news today and I am certain she will be heavily discussed in the breast cancer blogging world. The perfect and virtuous Angelina is actually in fact BRCA 1 positive which means like myself, she carries a lifetime risk of 85% of developing breast cancer and a 50-65% chance of developing ovarian cancer. When the odds are stacked so heavily in the cancer corner, her decision seems like a no brainer. (Just so you all know - less then 5% of all breast cancer diagnoses are BRCA related. There are two BRCA genes - 1 and 2 that basically propel your body to want to grown tumours rather then supress them. Check it on wikipedia for more info). But of course it never is as easy as it seems. Nothing is ever straight forward or sense-making in the world of cancer. One thing that did irk me about the article is that she discusses the extensive genetic testing, nipple analysis, and state of the art reconstruction she underwent and how she was able to continue working etc...The reality is that Angelina, unlike many of us, has millions of dollars at her dispense, a team of nannies and staff and has access to the absolute best in medical care. For the rest of us it is not so simple. Living in a country like Norway and its amazing health care system, I still struggled through my own experiences. Just last year, I decided against reconstruction for my one healthy breast when I removed for preventative reasons. Why? After a year of treatment and procedures, my husband and I could not imagine having to deal with a long recovery again and the stresses of looking after our daughter through it all.  And i thought about what I would do with one sorta normal looking boob and nothing on the other side. I actually thought being symmetrically flat would be easier to work with then the uni-boob look and it kind of is. But the trauma of waking up to nothing there versus reconstructed breasts is like night and day. I am definitely not trivialising the women who are able to reconstruct immediately because none of this is easy - it all sucks. But it is a different experience to have nothing there. When Angelina talked about how it didn´t change how she felt as a woman, I just can´t echo that sentiment. It has dramatically altered who I am as a woman and it has also taken a huge part of what makes me one. I am not comfortable with that part of my body anymore and it serves as a very real and very visual reminder of my experiences. Something will always be missing...

I am hopeful though that someone as huge as Angelina coming out with her own story will help raise more money for BRCA research and highlight this cause. I still find the fact that the best solution we have available today for women suffering from this genetic mutation is the removal of body parts. It just seems so barbaric to me. There has to be more out there for us...for our children.

I also have realised that the experience of finding out you have the gene before you develop cancer is an entirely different experience to mine. I cannot begin to imagine how those people feel discovering they have these time bombs and no idea when they will detonate. I lived in ignorance of my status until I already got cancer so my decisions were quick and there werent really any decisions to make. It had already been made for me. I had to do everything in my power to ensure i didnt suffer through cancer again because i had lived it already. I knew how unbelievably horrific it all was. But when you aren't facing your enemy head on and it is rather a threat, it must feel so different...maybe more conflicting? You are having to remove perfectly healthy parts because you might get cancer. So very different to actually having cancer. So I feel for my BRCA sisters and the difficult decisions they must make. But if a pink sister can give any advice (and I have cancer so you have to listen to me!) - If I could prevent just one woman from going through what I have lived for the past two years, god that would make me feel so good and maybe make this blog worthwhile. I often think about how things would have been different if I had known about this threat before it took over my body. Would I have been able to save myself from this? What would I have thought about it all and how quickly would I have done something about it? Would I have hidden away from the truth or faced it head on? All I know now is that I would give anything to be sitting here with two breasts filled with silicone that maybe looked alittle different then be faced with what I am living through today.

Love to you all!

OBB

PS: I am still waiting to see what happens on the hair front. All bets are on - will it stay or go? The truth will be revealed soon.

16 comments:

  1. I think you just posted an excellent BRCA guide 101. Well said, and I also hope that Angelina’s voice in this matter will ignite the interest and concern for more focussed research on this insidious mixed up gene for the present and future generations. The prophylactic measures are pretty invasive and can be traumatic, not to speak of the cancer itself. Yet given the odds, as you say it is no brainer. Life over body parts. Meanwhile hoping the immune system does a bit of a turn around and fights off the cold germs for you. The masks still were rather hilarious and laughter is healing.
    Onward and forward with hope and courage. I add my love.... and prayers.

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    1. Thanks Captain. Am glad you found it helpful as I worried it might appear a bit too bold. I do hope more money will be pumped into this cause and my daughter will have more options available (though i hope and pray she doesnt need to worry about this at all). Immune system is doing better - might be the acupuncture! xxx

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  2. dear kate,

    just wanted to stop by to tell you i am thinking of you, and to thank you for the very kind comment about me you left on renn's site. renn is something, isnt she? it was she who called for a rally around you, which led me to your blog. i felt so fortunate to find you, and blown away by the response you wrote to my comment about hugh and me. you poured out so much love and compassion - it touched us both so deeply. now my hugh is gone, but i'm still here, and i'm not going anywhere.

    i am sorry about your immune system glitch, but will BELIEVING it will all be well so you can proceed with your treatment.

    i think the thoughts you expressed about AJ's story were very well said and so relevent - and i admire your restraint to not be judgemental, but only muse over the important questions you ask yourself, and how you feel about them. i hope you can move forward and feel confident that what decisions you had to make were the right ones for what you were facing.

    for all you have and are going through, i hope those magic hair follicles do their thing and HANG ON TIGHT TO YOUR BEAUTIFUL HAIR. as always, sending you much hope and big love.

    XOXOXOXO, your fearless friend,

    karen, TC

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    1. Oh Karen - you have also been on my mind. I can only imagine the feelings and emotions you are coping with following the loss of Hugh. I am so sorry for your loss and even those words just seem so insufficient at a time like this. You are strong though and I can see your strength shining through in your words. I feel so honoured to hear from you and thank you again for your unwavering support of me. It means alot...more then I can properly express. I am here for you too and hope Hugh is up there looking down on you and being with you in whatever way he can. My hair is still hanging on and there arent many strands falling out so i am hoping I might get this break. Already new treatment thurs and hoping the storm isnt so strong this time. Big hugs to you xxx

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    2. dear kate,

      your kind words for me and about my hugh mean so much to me. thank you for your sympathy and all your good wishes - and please know that i FEEL those big hugs.

      love, XOXO

      karen

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  3. I wanted to say 'Hi Sweetheart', but was aware this might sound odd coming from someone you don't know. But I send you big warm hugs, full of affection and love and good wishes.

    I don't quite know how I found your blog, perhaps a combination of planning a long weekend in Norway and wanting a greater understanding of what its like to be diagnosed with breast cancer, two people i know have been through it and have talked about their fears of a recurrence. And its painful to hear your experience.

    Hang on in there and try to go with the flow. Maybe in two + years from now the hair issue wmight be forgotten? Or got over? But the whole unfairness of it all maybe not.

    Captain AC says it very beautifully, very eloquently, from all who wish they could help :

    Do not be afraid, we are with you...send out your fear to us all out here, who love you and admire you, your virtual army of support. We can each hold a bit of it and try to lighten your load. We are chanting, we are praying, we are loving you, surround you with healing light and holding you up.. we send you powerful strength for resilience made of love, faith and hope...

    Big hugs to you and those you love who are trying to support you, jenny

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    1. Welcome Jenny and thank you stumbling upon the blog, not to mention making a comment. I really appreciate you taking the time and I hope the blog might help give some insight into the whole bc experience. I try to show the good, bad and ugly of it with a huge side of humour. If you cant find the funny side of something then life will be truly boring and miserable. My hair did grow back really quickly the first time so if it happens, it isnt end of the world but still frustrating. Like getting to the top of a big hill only to be told you have to go back to the beginning and try again. I hope you will continue to check in here. Your support and words of encouragement are appreciated. And if you need Norwegian travel tips too. :) OBB

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  4. It has been quite he week hasn't it? This is an excellent post. Like you, I'm brca+, but didn't learn about it until after my diagnosis. I hear you loud and clear. I'm sorry for all the anguish you've been through and are still dealing with. Thanks so much for sharing your truths. They matter. A lot.

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    1. Thanks Nancy. I am glad you enjoyed it and it must really hit home for you too. Totally different experience being on the other side of diagnosis and treatment and then being thrown the brca bomb. I worried maybe I came across abit harsh but seems I was worrying over nothing. Everyone´s experiences and emotions are theirs. Thanks for sharing with me my dear brca sister. Hugs, OBB

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  5. Check out the Flat and Fabulous Facebook pages, one private - https://www.facebook.com/groups/FlatANDFabulous/?fref=ts and the other public - https://www.facebook.com/FlatANDFabulous?fref=ts
    They are really helpful in dealing with the new flat look. Hope this week goes well for you. God Bless you, Linda

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  6. Thanks for the links Linda. I will for sure check them out and get some ideas. I have seen many of these tattoo bras on facebook which are beautiful (though not for me). Too many needles! I appreciate the support and hope I can come back with a much better post treatment update this time. Hugs, OBB

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  7. Thank you for this post. Indeed. As others have said...excellent.

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    1. Thanks Heather. Glad you appreciated it. And I see from your blog, there are more genes to know about so thank you for opening my eyes to this. x

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  8. Ditto to Captain C - As a breast cancer survivor myself, I wasn't really aware of the BRAC gene even with both aunts having breast cancer.

    Sending positive energy and light to you.

    Best regards,

    Cindy Papale/author/breast cancer survivor
    http://www.theemptycuprunnethover.com

    Would love to send you a signed copy of my book. I have a friend visiting me from Norway on August 22. If you would like to email me where you are in Norway, I could give Solgunn a copy to take to you, if you feel comfortable. Solgunn is a young 35 yr old breast cancer survivor and we met when she became my patient to have breast reconstruction using her own body fat. I, too, had the surgery by my boss, Dr. Roger Khouri - Visit our website http://miamibrastcenter.com

    Thanks

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    1. Hi Cindy, Thanks so much for reading and offering your support. I actually believe I know your friend Solgunn and remember her telling me about the surgery she underwent in Miami. It is definitely something I want to know more about as I will be undergoing a second bout of radiation and have been told by many doctors that I am too thin to have a breast built from my own skin. I would love to read your book to do pass it along to Solgunn and I can get it from her. I willl also end you an email to chat further. thanks, OBB

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  9. PS: So sorry, my email is tabitha54@gmail.com

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