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Archive for July, 2010

Since I had my PBM back in February, I had not given a lot of thought to the part where I would have to have my expanders exchanged and the implants put in…..

I had my exchange surgery last Wednesday (21st) and have to be honest in saying that I still feel like I’m in the expander stage, I have yet to fully comprehend that the implants sitting swollen and bruised on my chest are going to be my new breasts for the next 20 or so years (their life span not mine!) I can’t quite understand if it is because I’m not ready to embrace them or if it’s simply the fact I don’t want to get attached in case god forbid something go wrong… I feel so annoyed in the last few days when people who have come to visit me ask “so how do they look”? the answer they want I suppose is the one of “oh fantastic”, and they even go so far as to say they do too….but I would be lying if I said that… I don’t know honestly how they look… they are swollen, what I can see is yellow, purple and some blue and the bandages that cover the majority of it up.. I haven’t studied them in the mirror or tried on my favorite top yet, I feel almost in denial of these new squishies! In some ways I think it is now that I am starting to “mourn” my old boobs, and am feeling a little glum, overtired and rundown, so maybe for now I’ll stop here and go and have a much need sleep.

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Since my PBM in February, I haven’t given my exchange surgery a lot of thought. Sure, I knew it was going to happen, and even had a rough idea of when…. So now that I’m 5 days away from it I find myself completely overwhelmed and almost consumed by the fear of it! I almost have to slap myself, I’ve got to be kidding right? what could be worse than the actual mastectomies your thinking? So when I was trying to explain this to a friend the only similarity that I could think of was, you know when your having your first child, and you have no idea what to expect for most of the pregnancy and certainly the birth, well that’s kind of how I feel…. I keep getting asked, “so this isn’t a very big surgery is it”? To me, that depends on who’s having the surgery, if it’s not you, then I guess it really isn’t a big surgery, but it is to me. AND the other question/comment that really PISSES me off… “Aw your so lucky, I could really do with a boob job” Really? I’m lucky? would you like me to punch you in the face now or later? I’m lucky in the sense that I have met so many wonderful people because of this mutation, but I don’t consider myself lucky in the way that these morons do! My breasts (apart from trying to kill me) were pretty damn good as far as I was concerned, and before my mutation diagnosis I had never considered any type of cosmetic surgery especially on my boobs!

I don’t have as much help, well to be honest I don’t have any help this time round (for me personally) for my kids yes, they will be in daycare, but I will be home…. by myself. Another thing I find almost to scary to comprehend, I know, I’m a big girl and all that, and will probably just sleep lots and lots but I just wish that I could have someone here,  I wish that things hadn’t turned into crap at Esto’s work so that he could have some time home with me, I wish that I didn’t feel so guilty for wanting that…. I wish for too much!! So I find myself in a strange place, not knowing what to expect, feeling rather insecure, and a little bit lonely, but deep in my heart, I know my BRCA Sisters are with me and know that this is just going to be another page of my journey, and the surgery is going to be one step closer for me to start living again…

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Recovery part1

I remember hearing the nurse’s voice in the back ground saying “Karin, it’s time to open your eyes now” and thinking, lady are you on crack, I am not opening my eyes, nope no way, it’s not happening, and then slowly remembering, oh I’ve been in surgery, oh my god… I’m going to vomit! I don’t do well after surgery, I have an extremely high intolerance to morphine, which was ignored and now I am throwing up and rather awkwardly I might add as I had drains in my side and a tube up my nose!!! Then I remember hearing her call Esto, “are you in the hospital? She is just in recovery and we are hoping to have her in the ward in about  20 minutes”…. Poor Esto ended up waiting almost 2 hours at the desk while they tried everything they could to stop me being sick..

When I did eventually open my eyes I looked up to see his worried expression and weakly smiled, the first thing he said to me was “I love you and your going to be fine, now just close your eyes and rest”, and that’s exactly what I did. It wasn’t until during the night when the nurse was waking me every two hours did I actually realize the gravity of everything I had just done, and I started to weep, not for me or my pain, but for the most special person I had lost to bilateral breast cancer 4 years earlier, I could almost feel her beside my bed saying “that’s my girl, you’ve done it, I’m so proud of you” and I haven’t wanted someone to hold me as much as I did that night. My Aunty is a very special part of my life and she never had the chance to change her destiny like me, she was certainly with me that night.

The next morning the nurse came in to get me out of bed, and possibly shower, I remember thinking she was incredibly bored or incredibly stupid for wanting me to get out of bed and shower, I mean hello… I just had both breasts removed… all she said was, “either you do it now or I’ll be back in 5 minutes,  you chose”!! I took the 5 minute option.. If I had to get out of bed I was going to do it on my own! And I did manage but once I was up I felt like I couldn’t breath and everything started to spin and then everything went black… I opened my eyes to see a room full of doctors and was hooked up to a heart machine, hmm maybe I should have waited for her help! I passed out because I suffer from low blood pressure and the tightness in my chest was just from where the expanders were placed, but none the less I gave everyone a fright including Esto who happened to walk in whilst I was passed out and nurses and doctors were in a flurry in my room… I swear he started going grey that day.

I was such a good patient I was discharged on day 2… “Um can’t I stay just another night please?” “No your fine, you will cope, oh and this is how you change your drains,  good luck”!! I was not ready to be going home, I was not ready to do this on my own, I was not ready to admit to myself that I no longer had breasts.. There was a lot of things I wasn’t ready for, but then I thought about my babies, and I was ready, ready to go home and start living, after all I had been given this chance to change my destiny, my babies were the reason I was doing this, it was time to start my new life…

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I have a wonderful breast surgeon, in fact he is the same surgeon whom operated on my mother and also a family friend, and by pure coincidence became my surgeon. I always feel at ease with him and naturally assumed that I would also have the same relationship with my plastic surgeon….WRONG! My breast surgeon had been referring me to the plastic surgeon for approximately 6months, and we waited and waited and waited, until finally 8 months after my referral he agreed to see me….

The whole appointment was a huge disappointment, with an instant dislike (which I’m sure was mutual)… “why do you want this surgery”? um because I have the BRCA mutation, “so what doe’s that mean” um are you really asking me? “I know nothing of this gene” and with that he thrust a reconstruction booklet at me and asked if I wanted to decide which surgery I wanted. Esto was looking at me sideways with his arm almost holding me down in the chair, I was ready to kick this guys ass and teach him more than he really needed to know. But quite casually I said “I’ve decided the best for me is the tram flap, I’ve done all the research on it and think that I would like to use my own tissue”… “well I’m telling you now he said, I am not performing a tram on you, you would barely be an A cup and look at your stretch marks, do you really want those as your breasts”? by now I’m not sure who is going to kick his ass, his nurse, my hubby or me! “oh, and if I do the surgery you will be waiting a year to two at the most” with that comment I stood up and said “mate I wouldn’t even let you cut cancer out of me, the thought of you even touching me makes my skin crawl” and with that I left.

In the parking lot Esto looked at me and said “are you ok”? No I said, “I think I may just have to get cancer before anyone will do this bloody surgery”. A month later my breast surgeon called, he was upset at the way I had been treated and didn’t want me to feel disheartened, he would put me back on the waiting list for a referral but couldn’t promise that I would be seen within a year, the only promise he could make was that I wouldn’t ever have to deal with the idiot that I saw last time.

So for the next few months I went back and fourth fighting with myself, did I really did want this, was this guys arrogance a sign that I shouldn’t do it? was he saving me from making a mistake? Then I started reading the discussion tabs on the BRCA sisterhood and all these wonderful brave women were having surgeries with no regret and feeling like a weight had been lifted off their shoulders…. I wanted that too…

And then I formed a special relationship with a group of women, Teri, Karen, Lita, Brandi, Caroline, Elaine, Rian, Mara, and Lisa and we could talk about anything and it was always told like it was, there was no holding back no matter what, we would talk about the good the bad and the ugly, I felt like I was finally somewhere I belonged and I was ready for surgery, I just hoped a surgeon was ready for me!

On the 5th Feb 2010 (11 months after seeing the first surgeon) I had an appointment with a new plastic surgeon, I walked into her office and instantly felt her warmth and compassion, we talked for over an hour before she finally turned and said to me “ok so does next week suit you”? “Um yeah ok”! This was really happening, she was going to do the surgery… we left her office in silence, we had expected her to say, sure your a good candidate but your looking at a year maybe before I will do the surgery…. not next week!

The car ride home was one I will never forget, I cried and cried and cried, with happiness and grief at the same time, suddenly it was all to real and I was freaked out, but really ready to do it. Poor Esto didn’t know what to do, for a day he was really silent, he worried how I would handle the surgery, having no breasts, all the emotions, it was quite fresh in his mind the events of 7months before when I felt like I didn’t want to live anymore after my oophorectomy and he wondered how much damage having both my breasts removed would do to me.  The difference this time was that I had a support network and they were not about to let me fall into the hole that had me so close to the edge earlier. Sarah decided to give me another week before doing the surgery, it was official 19th Feb 2010…

We sat on the couch the night before surgery, some neighbours were visiting to wish me well, one ending up leaving in tears, she couldn’t bare the thought of what I was about to voluntarily do to my body. I felt sorry for her, but couldn’t get caught up in that emotion, when another neighbour turned to Esto and said “so how do you feel about losing Karin’s breasts”!!! It was the first time someone else had acknowledged how he would feel and it put a smile on my face, he told me all the time that more than a handful was a waste and that after breastfeeding almost non stop for 4 years my boobies were starting to lose the “perk”!! but that no matter what, boobs or no boobs I would still be the person he fell in love with. We just wanted to be alone, we were grateful for the support of our friends and neighbours but this was our night to say goodbye to “our boobs”.

Esto held me all night, as if this was our last night together, and when I woke in the morning I felt more sad for him, for his anxiety for his worry of me, than I did of my own. We left before the kids woke up, it was hard enough leaving as it was, I didn’t want my children saying don’t go mommy, please stay….

Esto wasn’t allowed past the front desk, the nurse assured him she would call when I was in recovery, we kissed and held each other, this was it, there was no turning back. I watched him walk down the corridor, he got to the end and almost as if he knew I was watching turned back to look, we blew each other a kiss and he left. Sarah arrived and starting drawing on me, I felt really calm, and we chatted to pass the time, then she said to me, ok I’ll see you in there! I walked into theater and layed on the bed, music was playing in the background, and I was thinking I wonder what the kids are having for breakfast!! I started to feel all warm and tingly….. Karin count back from 10 10,9,8,7,6

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on the 21st July 2009 I had my bilateral salpingo oophorectomy (removal of my healthy ovaries and tubes!). When I look back on this day it makes me giggle….

hubby and I were sitting on the hospital bed, I was dressed in one of those oh so sexy gowns (reminds me of Jack Nicholson on somethings gotta give!!!) when this nurse walks in and says to me “ok love do you have any questions for me?” I said to her “actually I do…. I have the marena (IUD) and wondered if it would be removed during surgery?” “Um yes I would think so” was her reply….and with that she left the room.

A couple of minutes later she returned with a box and put it on the end of my bed, I asked her “what’s that for?” she looked at me like I was speaking a different language now…. Dear she said “It’s your new marena since your old one will be taken out during surgery!!”…. “but I’m having my ovaries and fallopian tubes out, SO I wont be needing that anymore” to which she replied “we will let your surgeon decide that dear”!!needless to say I didn’t need it anymore!! The surgery went well and yes the marena was removed!

Things were going well until about week 4 when all of a sudden life just got to much for me and I didn’t know who to turn to or what to do, suddenly I felt alone and lost and wondered if by doing this surgery I had ruined my life, unbeknown to me at the time, this was my hormone levels going from the moon to earth at great speed.  Life got really dark for a while and I turned into a zombie almost, not sleeping, not eating actually I was barely living, and one night in despair I logged onto facebook and typed in the word BRCA support group. I joined right away and starting making contact with other woman whom had done the surgery and all of a sudden I wasn’t alone anymore and what I felt was starting to make sense, all of a sudden I could see hope…..

up until that point I was afraid of what I was feeling, I had no idea if it was normal or not, I was to afraid to ask for help in case people looked at me differently or thought well to bad you did this to yourself, it was one of the scariest times in my life, but this group of woman embraced me like I was family and re assured me that although today might seem dark, tomorrow is another day and you really do feel the warmth when the sun shines.

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Hello world!

This is my first ever blog!!

I was inspired to blog for 2 reasons, 1) one of my best friends Teri, blogs a lot and she is always honest and tells it how it is, whether it’s good or bad and 2) I can’t sleep at night!!!

I am a BRCA mutant! 4 years ago I tested positive for the inherited gene BRCA1 otherwise known as the Breast & Ovarian cancer gene.

Definition of the BRCA gene

BRCA1:gene that normally acts to restrain the growth of cells in the breast but which, when mutated, predisposes to breast cancer. The gene’s full name is breast cancer 1, early onset.

The BRCA1 gene belongs to a class of genes known as tumor suppressor genes. Like other tumor suppressor genes, BRCA1 regulates the cycle of cell division by keeping cells from growing and dividing too rapidly or in an uncontrolled way. In particular, it inhibits the growth of cells that line the milk ducts in the breast.

More than 600 mutations in the BRCA1 gene are known. Many are associated with an increased risk of cancer. These mutations can be changes in one or a small number ofDNA base pairs, or, in some cases, large rearrangements of DNA. A mutated BRCA1 gene usually makes a protein that does not function properly because it is abnormally short. The defective BRCA1 protein is unable to help correct mutations that occur in other genes. These defects accumulate and may allow cells to grow and divide uncontrollably to form a tumor.

A lot to take in isn’t it?

My blog will be about being a mutant and also about being me!!!

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