Wednesday, January 30, 2013

Time to put my big girl panties on!

"Without fear there cannot be courage." Christopher  Paolini

Well here I am sitting in front of my command center in the living room trying to compose myself. It has been a very busy day for me and I have had little time to really digest what begins tomorrow.

I will wake up at the same time as I do every morning but I wont get suited and booted for work. It will be track pants for me. I will walk into my daughter´s room and try to rouse her from her deep sleep and hear "mama go away. I am not awake" a few times before she realises i mean business. We will eat breakfast, I will sip my coffee and we will pack everything up to get in the car. I will drive the same way to her daycare as I do every single morning. A quick drop off and a wink and kiss at the window and I am back in the car. I turn up the volume now and look for a favorite song. As i veer down the icy laneway, I stop - my instinct is to turn right but i must go left. Today has a very different plan in store for me. Anything but normal. My husband and I will then carry small bags full of overnight stuff and leave our daughter´s luggage by the door for her grandpa to pick up. She will not be with us.

Now I wish I could say we were going off on a wonderful romantic weekend but in truth we are not. We will be on our way to the hospital to start the beginning of three days there. One day of planning and marking. Another where the main event happens. The last to recover and make my way back home. I don´t entirely know what is going to happen aside from the fact that they are digging into my chest wall and taking something out. But I am afraid. I am afraid of the things that need to be done at work while I am gone. I am afraid of how much pain I will feel during and after. I am afraid of the restrictions in movement and capacity afterwards. I am afraid of the waiting once it is all over. Maybe that is the worst the part of all? Because you have truly done everything you could possibly do and then it all left up to some person sitting behind a microscope to decide your fate. Waiting is awful and much of the cancer experience involves waiting. You would think I would have grown more patient in the process but I am not. So I need to put my brave face on, crack a few jokes in the operating room, pop a boatload of valium and go in all guns ablazin´. I can do this. And it isnt like I can just not show up tomorrow. I have to do this and I will - with grace and courage.

Wish me luck everyone!


Thursday, January 24, 2013

My Guest Blog at Genesis UK

Hi everyone again,

I am guest blogging at this week and telling my story so check out the link. Thanks Karen for the hook up.

Here is the link:

Genesis Breast Cancer Prevention is the only UK charity entirely dedicated to the PREDICTION and PREVENTION of breast cancer. 

Genesis' established a purpose built breast cancer prevention centre, Europe's first, was completed in 2007 and they aim to support its services by sponsoring people and science.
They will achieve this by providing a strategic programme of clinical research, the UK's largest family history clinic, plus a training centre for specialists in all breast cancer disciplines.
Genesis promotes breast screening and early diagnosis, and research into new treatments to stop breast cancer in its early stages.

Thanks for reading,

FYI - I posted the text below which is pretty long in case the link becomes unavailable. Wiorth reading but of course I am bias. :)))

My Story Part 1

I started my blog following my first mastectomy for a number of reasons. The first being that as I was so far from family and friends, I needed a way to let everyone know what was happening without sending out dozens of emails and phone calls. My other reason came from my desire to help inform and empower other young women like myself – those free from cancer and also those young sufferers like myself who belonged to a very small exclusive group within the breast cancer world.
When I was diagnosed, I was like any other 31 year old woman – my worries were fairly surface and breast cancer was not something I even remotely thought about. However having been through what I have now, I have had readers tell me that through reading my story it made them more aware of their own body and realise the importance of noticing changes.
Cancer is not something that only affects older people. It is indiscriminate and terrifyingly ruthless in its pursuit. So when the opportunity to write for Genesis came up, I jumped at the chance to tell my story.
I always thought that if I can prevent one person from going down the same road that I did then I was having a positive impact. Given the focus that Genesis have on prediction and prevention, I was happy to align my experiences with them. I can only hope that with the all the vital research that Genesis fund, my daughter will not have to worry about this disease. That is my wish.
Nearly two years ago, I was like any other new mother with a baby who was nearing the one year mark. I was consumed by the daily routine, distracted by sleeplessness and thinking everything in my life was pretty idyllic. I had been living in a new country for a year and my husband and I were so utterly in love with our baby girl. I obviously knew about cancer, specifically breast cancer and remember the pink ribbons everywhere in October of that year. But that is where my knowledge and connection to the disease ended. No one I knew personally had suffered from it and all I knew was that it was the most common cancer amongst older women. I never ever thought it would happen to me.
I remember the evening I noticed a massive lump in my right breast that showed up one day.  It definitely had not been there the day before and I was breastfeeding so I didn’t worry too much. Of course I worried as anything weird in our bodies is distressing especially for me – the obsessive hypochondriac. I went straight to the doctor the next day who sent me straight in for a mammogram and ultrasound the following day.
Good news!
Nothing sinister could be seen from the photos – it was just an infection. Now I go over that day thousands of times – what if they had seen something different, what if they had caught it then? Why could they not see anything despite the fact a sinister creature was lurking? And what if I had never had this infection in the first place? Would the cancer have lain hidden for even longer and become an immediate death sentence? I have realised that going back and forth over the things you wish had been different is a fruitless exercise. The end result is always going to be same – cancer.
My case was no different. Five months after being treated for an initial infection that wouldn’t go away, they finally intervened surgically and a routine biopsy changed my life.  The weird thing is that they said that my original complaint seemed unrelated to my actual breast cancer but I don´t know. That boob was doomed from the start! But I do take some comfort in thinking that by having my daughter when I did caused a chain reaction of events that got me to a diagnosis. I might have never found it until it was much later and in my case, months would have made a huge difference to my outcome.  And to be totally honest – I didn’t pay that much attention to my breasts nor did I check them regularly. So in my mind I feel that my daughter saved my life in a way – is there no greater gift than that?
Unfortunately, the reality of a cancer diagnosis provides little other comfort to the sufferer. I always tell people that I was living in a new country, had just become a new mother and suddenly was also a breast cancer patient – all by the tender age of 31. It rattled my world to the core – it scared friends and pushed some of them away.
At my age, our greatest worries were about choosing where to holiday or what car to buy next. Very few of us were fighting for our lives and dancing around the room with our own mortality. But when your world comes crashing down on you, it really shows you what the people in your corner are made of.
There was so much love and support from all over the world which ensured that I rarely ever felt alone. It seemed like there was a new card or care package in my mailbox every day and people came from all over to see me and help. And let me tell you Norway is not really the easiest place to get to. I recently read an article about a study that found that women with strong families and friends around them tended to survive breast cancer more than those without. I was definitely not short on support and definitely think it helped me deal with my diagnosis and treatment.
To be continued…

Part 2

If we break it down simply – cancer plain sucks. I had more good days than bad but I still felt a lot of anger over the whole thing. I still have those moments nearly a year on from finishing my treatment, when I look in the mirror after getting out of the shower. I see these two long red scars across my chest that still ache with loss and pain. I still don´t feel at ease touching them. I often ask myself how I got here? How did I go from a bubbly 31 year old with a long mane of hair and two perky breasts to this? I know after I eventually have reconstruction (In Norway it is not common practice to do mastectomies and reconstruction in the same procedure and we must wait years for new breasts) I will feel better but never ever the same, not even close. I will always feel slightly uncomfortable, slightly asexual and slightly different from everyone else. And no matter what they can do surgically – I will never ever have nipples again! I cried on the operating table for both of my separate mastectomies – cried for my youth and for my femininity.
Now I am focusing heavily on the bad things here but don´t get me wrong, I am a positive person and I almost always have faced my cancer head on and found the good in nearly everything. Cancer taught me that I am so much more than what people see and it taught me about what truly matters in life (hint: it isn’t that next promotion at work, the size of your savings account or the next it bag). What matters is your health and the people that surround you. We all need a roof above our heads and food on the table but beyond that we need love.
I often thought about all the boys I had dated over the years and wondered how they would have dealt with this had they been my partner through my cancer journey. Then I think of my husband. I could not have had a better man by my side. From that first moment when he picked up the phone and a nurse told him he had to come now as his wife had just been told she had cancer – he was there. Solid as a rock. My refuge and safe place when the world around me was churning pure chaos. He told me I was beautiful the day I shaved my head. He told me that if losing my breasts meant I would stay here in this world with him, it was a small price to pay. With or without my body intact, he would love and cherish me. He has stayed true to his word and of course there have been some tough times, but I am so grateful that i had and still have him with me to weather the storms and anything else that lurks down the road of life. Because that is the thing about breast cancer that people who have never had it don´t understand. Once you have it and do everything possible you can (double mastectomy, axilla lymph node removal, 6 months of chemo, a month of radiation all topped off with 5 years of hormone therapy in my case), there is little relief at the end. We don´t magically return to our original selves the day after our last radiation session.
There are losses to mourn and traumas to overcome. But perhaps what is worst is the fear that  it can come back even if you do everything right and there is very little you can do about it. That is the bitchy and unfair side of breast cancer. Especially for those of us with triple negative cancer which tends to have the worst relapse reputation. Of course my body would thrive to over achieve in the world of cancer and be the more rare and deadlier kind. Yeah me! But we breast cancer patients try to forge onwards and accept that uncertainty is just par for the course – or course.  Acceptance is huge and like my diagnosis,  I have learnt to accept that I cannot change my Ki67 values or tumour grade. What I can change is how I decide to live my life and how I interpret and react to information.
None of us know which women will be okay and which will not be so lucky but god do we wish we had a crystal ball to answer this dreaded question. The fear of the unknown in the world of cancer is awful. Every time I see my oncologist all I want him to tell me is that i am going to be okay but he can never really ever tell me that. They don´t know, we don´t know – no one knows but those anonymous little cells floating around our bodies deciding what to do. Makes you feel very helpless at times. I try to not waste more of my life worrying about relapses but it is so hard not to. I don´t want to die of this awful disease. I want to live a long happy life and say goodbye to this world, wrinkled and grey in my bed under a warm duvet, surrounded by my people. That is what all of us breast cancer sufferers and survivors want.  A chance to live.
So that is just a bit of my story. I could write about it for pages and pages and I have even left out some of the bigger parts of my story. There just isn’t space for everything and cancer is a long long story and it feels like mine continues on and on. I know there are still hurdles to overcome, operations to do and hard conversations to start. My cancer story is complicated and the web it consumes seems to grow by the day. But it doesn’t mean I or my family wont overcome it.
You hear that cancer? Yeah that´s right – I think you can just bugger off.
OBB (I began my blog as the One boobed bandit but amended it to 0BB as it the number zero).
OBB is now 32 years old and living in Norway with her little daughter and husband. Following her treatment for triple negative breast cancer, she is now cancer free and back in the working world.

A Bump in the Road

I don´t know what to say or how to feel. I just know that I am angry, sad and exhausted all at the same time. Now please don´t go thinking the worst because things could most definitely be worse right now. I think of the people killed in Algeria last week and try to put my situation in perspective. I was not tragically killed in a terrorist attack. I am here and nearly intact in a warm home with people who love me and all the candy I want.  That is one of the main things that is keeping me sane. Things could be worse. I told my doctor those exact words last friday when she told me there was a problem. I am always so terrified of missed calls from the hospital and this one was especially tough as I had to take it at work. Luckily it was one of my favorite doctors who isn´t actually my doctor but has taken a personal interest in my case. She is the one who took time out of her busy day to hold my hand through my terrifying biopsy experience a few months ago. Hearing the news from her lessened the blow and I even managed to crack a few jokes (cancer jokes of course!). The situation is - same place, same problem. And it isn´t any major organ which is great (I find every positive I can!). Go me! But they are concerned and think it is in my best interest to completely remove everything that is suspect. I want to emphasise that we do not know nor can we confirm what exactly it is. All we know is that it is suspicious and we want to get the sucker out to get a better look. And when I say sucker I mean something that is roughly 1cm in diameter - a tiny problem really.  Better to have it out then wait it out and just see where things go! But to remove it involves another invasive procedure that is icky and hurts which frankly sucks eggs. I hate pain full stop. I don´t know everything for sure yet but all will be revealed in the next few days and the actual procedure will be done in the next week. I am so impatient.

I know that I have to remain positive and be brave. Again. God I hate being brave. I hate operations and procedures. I hate cancer and all the total crap that comes with it. I am too tired tonight to be a super hero. I am just trying to get by. What makes me so mad is that I have worked harder then I think I ever have before in these last few months - building a new life and pushing myself to new heights that were so unbelievably fulfilling. My life and mental space had moved beyond this experience. Everything was working so brilliantly with everything falling into place. But then this crap happens and you can´t help but think of it all being taken from you. I am hoping desperately it will only be a minor setback but I am so sick of setbacks. Can´t a girl catch a break? And I also worry what more scarring and pain will do to me. My body is already mangled enough as it is. Just another scar to add to my collection marking another journey along this tough road.

So this is my news. I know I need to be positive, be strong and look at this as a small bleep on the long road of life. But do give me a few moments to kick, scream and cry over it because it just plain sucks. There is no way of sugar coating it or making it be ok. It is not ok and I don´t ever want to be in a place where things like this are acceptable. But it wont stop me from picking up my sword again and facing the challenges ahead like any other superhero would. At the end of the day what choice is there really? To move forward past the obstacles in your life, you sometimes need to walk through alittle fire and maybe end up with the occasional bump or bruise. Just as long as you come out the other side... stronger and better then you were before.

A slightly deflated 0BB

Monday, January 14, 2013

10 Things That Remind Me - Oh yes I had cancer

10. My fingers and toes, especially the middle three, go white and completely numb at the slightest breeze in the air. This is an after affect of chemotherapy and there is nothing you can do about it which is frankly awesome. I guess I will be wearing mittens year round from now on.

9. Scars. I have mentioned them many many times on this blog. I still have them and they definitely ain´t going anywhere anytime soon.  I have a few - obviously the two bigs ones, the little one, the biopsy one, the radiation one...Every scar tells its own story and has its own unique shape and characteristics. They do remind me of the horror of it all but they also remind me of how brave I have been.

8. Doctors. I get a letter in the mail every other week telling me I have to go see this oncologist, that pain specialist or that other doctor. My calendar is sadly not full to the brim with exciting social engagements but rather health related ones. The last two years I have played a game with myself and the Norwegian medicare. You need to spend a certain amount of money annually before all your healthcare becomes free so I see how long it takes me to get my free card. Last year I qualified by mid February which was pretty fast but I may be onto a new record this year. I need some new hobbies!

7. A PET scan is no big deal. Before I had all of this happen to me, my experience with scans were limited to one head CT when I was a teenager and then an ultrasound to see my baby for the first time and if you would have asked me what a PET was I would have said "Oh yes I had a dog named Cassie when I was young. And you?" Well the scans i have had in the last 2 years are of an entirely different nature and there is nothing fun or exciting about them. MRIs, CT-PET combos and bone scans...all the colours of the rainbow. I have had them all. I realised what a pro I had become when I had my PET this morning and didn´t really sweat over it too much. I knew the drill, what would happen, how long it would take. There is definite comfort in knowledge.

6. Chemotherapy is not just something I experience on the Lifetime Network movie or on Greys Anatomy. It isn´t noticing a woman at the table next to me wearing a scarf over her bald head and thinking "Oh my god she had cancer." It is something I have lived through personally.  The sheer terror of that first time waiting for them to call your name when you know nothing of what lies ahead and can imagine only the worst. And then going through hell once only to realise you have another 5 months of this nightmare. And who can forget that moment...when the first strands begin to fall. You are never the same. How could you be?

5. Needles. Now I have never liked needles. Ever. However I have managed to get through probably like well over a 100 blood tests, over 30 IV vein insertions, giant needle biopsies and more. You could say that my relationship with needles has reached an intimate committed level. We still drive each other crazy but we also see the necessity of our union.

4. Friends with cancer. I never knew anyone close to me who had cancer. I didn´t know anyone intimately who had died of it. Maybe I was lucky as cancer just seems to be the annoying person who always shows up to the party when they were clearly not invited. Now I have friends who have been through what i have. Some who have won their battle, others who are still fighting. They are people I turn to who just get it. Who no matter how moany and annoying you sound to everyone else, they understand and listen. These cancer peeps are made of tough stuff and that is one very good thing that came out of this.

3. Time. I don´t look at time the way I used to or the way most people do my age. I used to think I had all the time in the world to do everything. No stress - I will figure it out. Well now I know otherwise. You cannot wait for the right moment - you have to close your eyes and take biggest flippin´jump of your life. I feel that every 3 months I get by without something new going wrong is a victory. I am ecstatic to have turned 33 last week. Every birthday is a gift and I cherish the idea of growing old. Not everyone has that opportunity so screw the wrinkles and enjoy it.

2. Fear. Even though I am moving on from the whole C experience, the fear never completely leaves me. It is always a blurrry figure in the outer edges of the background or something that catches my eye for the quickest of moments...the big R. Also known as recurrence. Every cancer survivor lives in fear of its wrath and hope and pray we are not the chosen one. When you have been through all of this once, the thought of doing it again is just too heavy a cross to bear. I carry this fear with me every day but with every day, I also get more used to the uncertainty that is now a part of my life, and that every day lived is a small victory for myself. I could never have imagined myself being so at ease with my own mortality before this. Or maybe I am just so confident that I will win?

1. The single biggest thing that reminds that I had cancer is the fact that I can tell people, "I am a cancer survivor." When I was first diagnosed I hated that term. In recognising that there were survivors, it also painfully exposed that there were also those who didn´t make it. Survivors always seem to be smaller in number when crashes or disasters happen. The news headline "There were only 50 survivors." It doesnt sound good and there just seems to be a negative connotation surrounding it. I know it can be a good thing too and I can appreciate it more now as I in fact know many survivors - my mother and myself being the best examples I can think of. So I will yell it out with pride and vigour - " I am a of many."

Saturday, January 5, 2013

The Flat Side of Life

Happy New Year everyone! It is 2013 and we can all start fresh again. What is very exciting for me is that now I can´t say "Oh yes I had cancer last year." Instead I am nearing the 2 year mark in a few months and things seem to be going fairly well. I still cant believe that is was so long ago now. I have often thought back to what i was doing this time last year, the year before...I always do that. Get stuck in the past - call it my sentimental side. I also look back at pictures taken months before it all kicked off and think...hmmm I had this crazy nasty cancer then but I didn´t know it. I look so different to myself. There is a lightness to me, an innocence that is no longer there.  No one can deny that it has been a tough 2 years for all of us in team OBB and the weariness is sometimes even too much for even YSL touch eclat to hide! :)

Recently my daughter, who just turned 3 on New Years day, informed me that I did not have any boobs. Now of course this was said in Norwegian as she has recently decided English was totally 2012.  She told me in a non chalant manner that pappa didnt have boobs, she didnt have any boobs, and mama didnt either but her aunty definitely did. I have not really talked about my C story with her but of course this was something I was expecting. Of course she knew mama had ouchies but she hadnt been totally aware of the anatomical differences between myself and other women. Now she knows that I am different. She even sometimes mimicks breastfeeding when she pretends to be a baby on my chest and I feel slightly awkward with my two big scars in the place where my breasts used to be. She also knows that her mama needs medicine for her pain and last week when she accompanied me to the hospital for a blood test, she proudly came home and told her pappa that she had taken mama to the hospital and she got an ouchie. She gently touched my arm and pulled the sleeve up to show the proof. How did she get so intuitive at the tender age of 3? Now I have told her that mama´s boobies got sick so she had to take them away to be okay again. She seemed satisfied with that explanation...for now. I know this conversation is far from over but the way i look at it - I am fortunate enough to be having this conversation at all. I am here to tell her my story in my own words so she can understand what she needs to and I can be there to fill in the blanks. There is less fear in that.

Now I have written lots about finding the bright side to a double mastectomy (without opportunity for reconstruction yet). Not so funny fact - in Norway it isn´t standard protocol to reconstruct in the same operation when there is already cancer detected. You must wait years (like 5 or 6 years!!!) to get a new pair of boobs and after all the treatment, radiation and time...the operation is not so simple. :( So anyways I have noticed lately that often one of the first things i notice about a woman are her boobs. This isn´t in a creepy perv kinda way ok! I self reflect through that other person and wonder if people can notice that I have none just as I have noticed they have little ones, big ones, saggy ones...I think I am missing them more and more these days as I struggle to find outfits and scarves that hide my flatness as wearing prosthetics is not possible with my pain problems. About 80% of my wardrobe is redundant now. And when I go out shopping, I need to go with the more boring options and the lingerie section is completely off limits to me. No Victoria´s Secret angel here! I also have noticed the few times I have gone swimming, how strange it is to be freezing cold and not have any nipples. After years of swimming competitively, my friends and I came up with many terms for what happens to nips in the cold - party hats, ENS (erected nipple syndrome), those babies could cut glass...Funny yes but now I don´t have any such external temperature devices. I just feel cold...everywhere. Another thing is when Great Aunt Flow comes around every month...there is no warning in the chesticle department. I have no sensation and no idea what is happening. Lastly I genuinely feel less attractive and feminine. Thank god I have an incredible husband who loves me for me and not for a kick ass set of boobs but I still feel robbed. In a way I don´t think I ever fully appreciated them when I had them and now that they are gone, I pine for what was. I also think that if by some miracle I get the chance to have another child, how strange will it be to be pregnant with no breasts? Having a big round bump and then nothing above. And the fact that there wont ever be an option to breastfeed again. That mammary ship has sailed off into the deep white sea. I actually remember when I had my first surgery before we knew anything was seriously wrong and I told my good friend that I was most concerned that I might not be able to breastfeed on one side again. She told me that it was very evident that I was a very good and caring mother as my first concern was the well being of my future as yet unborn children.  Oh how I wish that would have been my one and only concern. Now the bottle will truly be my only option if I even get a second chance. But I guess I can be thankful that I got the chance to give my daughter the best start the first time around. That is a gift in itself and I am so grateful I got to experience that with her and as a woman.

I searched the web for a quote to conclude this entry about the loss of a part of you. Unfortunately nothing I found was right so I thought I would take a stab at writing my own.

Losing a part of you. Something real that you can feel, touch and see. It takes something deeper along with it and you are changed forever. The contours are no longer there, the feminity you had is now diluted by pain and the knowledge of what that emptiness embodies and represents is something you can never forget.

An extra tight hug from OBB