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.

The Phoenix Rises...

I had the strangest and most real sensation happen in my hospital room last Friday night. I was in and out of a very heavy deep sleep after having been given my first toxic dose at the C-Spa. As the poison reached from head to toe and thumb to pinkie, I lay there trying to make sense of the port in my chest. Of the pain in my shoulder. Of the fear and anxiety over when the sickness would hit. I hated every moment of it and I was so scared. However in the stillness and darkness of my sterile room that stank of cancer and sterile products, I felt some peace. I can´t quite describe it in ways that make sense to everyone but they made sense to me. I felt three soft caresses on the top of my head and three gentle kisses on the same spot. In that moment there was no fear around me and I knew in my heart who it was. Who would have been there by my bedside if he could of to protect me? Who was there most of my life to shield me from pain and suffering? It was my daddy of course. Maybe it was the drugs or maybe it was him, just letting me know how in his own gentle manner that he was there.

It is six days since I had chemo and it is only today that I can bring myself to write anything. It was mostly due to the horrific state of health I was in but also the fact that I just couldnt write the words nor relive the experience until today. It was honestly all too nauseating to do before especially when I was feeling so frickin awful. No OBB didnt catch a break on this round either! Fuck the universe! I find it hard to say whether it was worse then the last because they are both so different but both suck unfortunately and my body said NO! After 3 days in the hospital and a blood transfusion later (yes I can now add that to my list of medical procedures), I was struggling and literally didnt have any energy to function. And the nausea? Oh god I fucking hate nausea so much and nothing would rid me of it. Apparently anti emitic drugs have not advanced enough to shield poor OBB´s gentle stomach from the tsunami that hit me this past weekend. When my doctor texted me Monday asking how I was doing, I replied - "Awful - how much longer till I get some relief?" To which he replied - 3 -4 days! I just about collapsed in a heap at that moment. I just couldnt take any more of it and that seemed like an eternity to my weather worn stomach lining. But that is the thing with round 1 - it is the beginning. There is much much more to do and there isn´t anything you can do about it. Being so ill and unproductive makes me so scared because it is like a bitter and twisted taster of what could happen. What your life could become and I want no part in it. It breaks my heart into a million pieces just thinking about it really.

So how did team OBB fare? My husband was great and was there every step of the way in the hospital for all the scary moments and never flinched. Maybe once when I got the very Twilight inspired bags of blood? And my daughter coped as kids do and adapted to the changes. But today I noticed a change in her as I could finally interact and be with her today. In response, she didn´t want to leave my side and asked me to do every puzzle in her box or to come here and there with her. When I asked if she was happy that mama wasn´t so sick today, she said "Mama I am so happy you feel better" and she wrapped her little arms so tight around my neck, patting my back three times and planting kisses on my head. Feeling her so in love with her mother, with me, makes me dig deeper and want to fight that much harder. I have to do it for her. I have to wrestle all the demons that come with the C-Spa and just do it. She needs me. My husband needs me. My family. My friends. I need them too.

So I am just waiting for my appetite for Ben and Jerry´s to return before I know I am fully recovered! I will look after myself and get the antibac gel out as the immune system starts dipping now and try to put round 2 as far from my mind as I can for right now. When it comes, I will be as ready as I can be and everyone will be there with and for me - ushering me to the finish line...again.
Love,

OBB

PS: I have been in a virtual "incommunicado" mode since last week so don´t take any of my silence - emails, sms, phone, skype personally. Mom - that is you included! :) xxxx

Pre Chemo Ponderings

"So I hope I get some rest and don’t spend too much time wondering how it will be, will it hurt, how will I react, will I cry, when will the hair go…? Weaker people (physically speaking!) have been through this and come out the other side and so will I. So I will open my veins and mind to the experience and remember that I am doing all of this to safeguard my spot in this world for a very, very, very long time ahead. Bring on the poison!"

These are my exact words from the blog entry I wrote nearly 2 years ago on the eve before my first chemo. I seem very optimistic, energetic and positive. I am still all of those things but I have also evolved and grown. I know so much more and I have experienced things that the girl who wrote that in 2011, couldn´t have imagined. On my last day of freedom, I feel like the tank is empty and I have so little energy. I seriously debated running away last night as the fear and anxiety took over to levels I found hard to bare. I am so afraid and the clock is ticking faster and faster, summoning me to the C-spa for my next battle. I want to be the coward who runs and hides until the worst is over but there is really nowhere to go. I must stay here, dig deep into my arsenal and find some bloody bravery to get me through this next giant mountain. There is so much more to think about this time and the unknown terrifies me again. How will I react friday? Will I completely break down like last time? Or will shock and fear turn me into a robot? I just don´t want to be sick again. I don´t want to worry about kissing my daughter for fear of germs. I don´t want to have to take a nap every day so I can have the energy to get through a day. I don´t want to check my temperature constantly out of worry of some major infection striking. I don´t want to keep checking and pulling my hair so see if it is falling out.  And I don´t want to think about what this second round of toxins is doing to the healthy parts of my body. I guess the most important thing to think about is dressing these little toxic soldiers up in titanium suits with valarian steel words who will run rampant through my body killing any cancer cell that dare come in their way. Losing is not an option. We must be triumphant.

I am not sure what my shape will be like over the next week so I hope I will manage to keep you all updated through this first round. So many of you have been so wonderful and supportive and I so appreciate it. Even though I am often surrounded by people, in times like these, one can still on occasion feel very alone. It is moments like this when I remind myself of all of you - Team OBB who raise me up.

I have realised through being seriously ill that it can be so hard to ask for help. I am not good at it nor am I good at letting people do things for me. My husband is even worse at this. Often times when we have had visitors here to help out, we often end up hosting them because of our inability to let go. So please be tough with us and when help is offered, make sure we take it. I am getting better at it and I have also discovered that in situations like this so many people want to help you but don´t know what to offer or are afraid of intruding. I will try and get better at this as I know now more then ever we will need help to get through this. There is something so difficult about admitting you are struggling, especially for people who are young like my husband and I - it feels sometimes like defeat. But I now see that admitting this only shows how strong you really are.

Geez the day is already half way over and I am still in my bathrobe. The hours are going by so fast and with each one that passes, my fear rises. I am frustrated and annoyed at things I shouldn´t be and I keep trying to eat everything I love now. Coffee, chocolate, Mcdonalds nuggets...all of these things will most likely not be my best friends for a long time so I am savouring them now. I know I have a virtual army of strength surrounding me and sending me positive messages and endless hope - I will use these to help me cope with what lies ahead. I just wish things could have been different...I wish so much.

"Before I knew you, I thought brave was not being afraid. You´ve taught me that bravery is being terrified and doing it anyway." Laurell K. Hamilton

Love, OBB

Back from Paradise

Hello World!

I am back in the living room command center after having spent the last week in glorious sunshine! Living in a cold climate like Norway, the weather is like russian roulette - you never know what you are going to get. But in the Canary Islands every morning I woke up and pulled open the curtains, the sky was blue, the air warm and the sun creeping up behind the big rocky hills. And the freedom of just running out the door to breakfast without thinking of jackets, mittens and scarves was pure bliss. We really enjoyed ourselves as a family and I ensured I took full advantage of the unlimited buffet meals (waffles with nutella anyone?) and spa. I finally got that pedicure I had been wanting for oh...about two years for. But no matter how amazing it was, I couldn´t quite escape my dark passenger. It would pop up in a quiet moment or when someone asked me about my scar or when we were thinking of having a second child. Suddenly I was the girl with cancer who had to go home and get involved in some serious life saving activity. I was the girl who was recovering from major surgery. And I was the girl who had to chose survival over the opportunity of being a mother again. For the first time I identified myself as someone with cancer because as my scans reveal, I do still have it in my body. Before I always called myself someone who had had cancer and was just having extra treatment because I was so young. Throughout the holiday, I mostly kept my secret identity on the down low because I find some people can react very weirdly and it can also be a total buzz killer. And if anything, feeling normal and just part of the gang was good for me. So all in all the trip was a total success despite a few deep moments here and there which was inevitable. But here I am back again - days away from the start of a new battle and I am so scared. You know coming home from holiday is always a bit depressing but coming home from holiday to start chemo is just downright shit.

So the rough plan we arranged before we left was to be admitted on thursday to have my central port* put in which is a minor surgical procedure. I would then spend the night in hospital and get my first dose Friday. Apparently you don´t start to feel super awful until 24-48 hours post dose so I should be dying just in time for Sunday brunch. Eggs benedict anyone? :) I did meet with my both oncologists (seperately) before we left on holiday and there just wasnt time to report it all back on the blog so I will now. One doctor (the head honcho) informed me that i would indeed lose my hair during this treatment which sucked the wind out of my sails. I told him that he had burst my last balloon of happiness with that blow. He also told me that my preliminary scans were okay - major organs like the liver and lungs were okay. There was one spot on my neck that needed clarification from the radiologist which I still don´t know about yet. So if the neck is okay then we are still doing ok people. I am still looking at a real shot of being cured...again. What scares me (besides the actual chemo) is the fact that if this doesn´t work then things are going to be really really bad. I asked onco #2 whom I love (and also disagrees with the hair loss) about this fear of mine and she kinda confirmed it. So I have decided that this medicine has no option but to work and rid my body of cancer cells for good. I am running out of lives and body parts to remove so please chemo - kick this cancer´s ass! And be assured that i am totally going to fight like hell but part of this process is allowing yourself to feel everything and visit every scenario. I want a happy ending but I am also not naive about the cancer I have. I am fighting a very aggressive cancer that has returned - there is nothing to sugar coat what that means. In many ways I feel really helpless now and like everything is out of my control. I have done all that I can do in this battle and now I must pass my sword onto the medicine. It is this awful toxic stuff that must do its job and save me. Why couldn´t it be cake godammit!

So I will try to get myself ready for the week ahead and eat all the foods I enjoy now. Both my doctors warned me how sick I was going to feel and doctors tend to play things down so this made me increasingly anxious. This is apparently one of the worst chemos out there and given how I responded to the last one, I am expecting to feel pretty damn awful. Expect the worst and sometimes you can be pleasantly surprised when it ends up better. That will be my strategy for this next trial. I might go back and read the entry I wrote way back in may 2011 on the night before my first chemo and see how much I have changed since then. Or maybe I am still very much the same...a scared and hopeful woman that just wants to be alive and healthy and will do whatever she has to do to get there.

Love,

OBB

*: Not all of you will know what a central port is so I thought I would enlighten you abit. A central venous catheter ("central line", "CVC", "central venous line" or "central venous access catheter") is a catheter placed into a large vein in the neck (internal jugular vein), chest (subclavian vein or axillary vein) or groin (femoral vein). It is used to administer medication or fluids, obtain blood tests (specifically the "mixed venous oxygen saturation"), and directly obtain cardiovascular measurements such as the central venous pressure.

My Month in Pictures

Hi Everyone,

I thought I would make a post with some pictures that were taken in the last month to:

1) Brag about how cute my daughter is. :)

2) Give those of you who don't get to see me or my family in real life (facebook excluded) - a chance to see us.

3) To show how life can really be tough sometimes but there are always things that are worth celebrating and enjoying no matter what.

Don't forget to enjoy your moments!

 Our first date night since 2012 this past weekend!

 My little monkey in living colour.

 Love.

Being with family. Two generations affected by breast cancer.

Loving one of my prized possessions...my hair!!!

Love,

OBB

Catching a Break

Ok so I had to write an entry after discovering some frankly amaze-balls information following my last entry. For some odd reason (or perhaps I just assumed and one should never assume anything in the world of cancer) that my chemo would make me bald. I mean that is what happens generally and I have experienced it first hand so why would it be any different now? Alas I am so happy to be wrong. This is one of the few chemos that most likely wont make you lose all your hair. It is not a standard breast cancer chemo drug and most of those make you into a cue ball hence my assumption. About 1 out of every 1000 people who have this drug will lose everything but most lose some and it usually doesnt warrant wig wearing. I cannot describe the relief upon hearing this news. Suddenly I could still be me. Even though chemo will make me feel so super crap there is so much comfort in the fact I wont need to shed a layer of myself. To everyone else, especially in the eyes of my daughter, I will look the same, just alittle more battle worn. This was literally the best news I had heard in months if not years. Now my hard earned pony tail would not have to be cut!

I went back to work yesterday and it was surprisingly good for me. My brain is definitely stuffed with cotton wool but being back in a non cancer environment is refreshing. Everyone was so happy to see me but it was slightly tiring responding to the question "So are you healthy now" 30 or 40 times. How do I answer that exactly? I really dont know. I know I need treatment to give me the best chance at being healthy but beyond that I just don´t know. By the end of the day, I was exhausted with a headache and kind of over relieving it all so many times. I have decided to try and work as much as I can manage through my treatment because I think it will keep me clear, sharper and less insane. Gettting a break from being the cancer patient will be good for me. Last time I had treatment, I learnt Norwegian so why not use this time to do something productive again.

We also got the PET scan date which is next Wednesday. This is my third in 8 months so I am a total veteran of the positive emitron transmission scan. No physical activity 48 hours prior so i will be chilling out next week. And then my husband booked our holiday! Woohoo!! I am so excited. Next Friday we will get on a plane and head to the sun to do what normal families do. Spend some time together in the sun just having fun. We will go without knowing the results of the scan and I am okay with that. After everything we have gone through, all the waiting and all the stress, it just doesnt seem like that much more to bear. I can´t change anything that has happened or that is in process, I can just remain hopeful that things wont get worse. For those seven days, I will enjoy my last few moments of freedom. And when I return from this trip, it will be time to get the show on the road. I have decided to get a central port put in to have all my chemo administered through. My veins are total nightmares from all the previous abuse so this will spare me the needle anxiety and missed attempts but I of course need to get the bugger put in. More on that procedure later when I find out more about it. Isn´t cancer fun?

For now it is a time to rest...the war has not yet begun.

Hugs,

OBB

Drawing Battle Plans

So we are a few days since the C bomb hit again and where exactly am I? Well I think I still marooned somewhere between shock and denial. I still have yet to shed a tear over the news but I am feeling a whole spectrum of emotions and feelings. Firstly I have been so tired - having nightmares most nights and waking each morning feeling so tired that I feel ill. It scares me to feel this way because it reminds me of what is to come. Secondly I have been so bloody mad. I get mad at everything - how I am too cold in the house my husband finds too warm, at the person who got stuck in the intersection and made me miss my green light and just silly things like how crap this is all going to be. I have been looking at myself alot in the mirror and looking really hard at this person I can see. I take in the length of my hair, my shapely eyebrows and long mascara extended eyelashes - all things that will disapear in a few weeks. The brightness of my face and the healthy colour of my skin - all signs of my youth which also, like all the hairs on my body will slip away. Of course none of this will be permanent - it will maybe be more like the way winter comes in and kills everything but then when spring arrives and everything comes back. But I just don´t want to do it again. I got the tshirt thank you very much and the horrific memories. And let me tell you - shaving your head once is thrilling but twice? Completely unneccesary. I have to start thinking about wigs and head scarves again. Am I going blonde? Bobbing it? Wearing more scarves this time? So many things to think about. Last time I had about two months to process and prepare for the C-spa experience and boy do you need it. Doing chemo is like going to war and you cannot go in without your arsenal. Aside from the obvious hair challenges - I need eyebrow pencils, hats, summer clothes to shield my sensitive chemo skin from the sun, hypoallergenic products, comfy clothes, and foods I hope will go down easy, And you need to get your teeth cleaned, get a manicure and pedicure (this is all due to risk of infection during treatment), and then there is the whole mental aspect of it. I feel like I was so much stronger last time and had the time and energy to do my yoga, visit my acupuncturist regularly, practice mindfulness, do physio and just relax. And I was much more naive the first time. I remember telling myself that this would be the first and last time I would ever do this. Oh how life fucks you over sometimes? Now I wasn´t sure whether being an experienced chemo veteran would help me out. Sometimes not knowing can be better and of course you are terrified but you are still optimistic and hopeful. Now I am battle worn and know what a total hellstorm this can be so I am again terrified and also know what it will be like. But like a dear friend said to me a few days ago - You need to welcome this poison into your body because it will save your life. You cannot hate it. You have to love it because it is the best weapon i have got against my enemy. Interesting concept really and I do see the point of it and the power of positive thinking. But I still secretly hate it. And the more I read about the scarier it gets. Apparently many people nickname it - "Sickplatin" which I am sure I dont need to explain further. I guess we will just need to see how I respond and if it sucks, I will do what I did last time and count out how many actual days through the whole process I will feel horrific. It was 14 last time in the first 3 months which is manageable I guess. Everything is manegeable if you break it down into itty bitty parts. Time to get just that much tougher. Bring on the poison and let´s save a life along the way. And at the end of the day, I want to do nothing more then fight like hell to be here...for a long time.

So I am still waiting for my PET scan day which is imminent. I am scared of that too and don´t want any more surprises. I have had more then enough for quite a long time thank you very much. So right now i am spending my time buying lots of toys for my daughter, enjoying our new home and trying to just be with the people I love. We are hoping to go on a holiday in the sun before my treatment begins because I need to. Delaying it a week wont kill me but not having a break and enjoying myself, might actually so we need to do it. And considering stupid cancer already caused us to cancel our Canada trip and now will exclude me from our Turkey trip in June, we need to do something fun as a family.  My doctor actually thought it was a great idea. So lets hope it happens because I am freezing! Norway has not heard that it is Spring as there is still snow on the ground and sub zero temperatures.

Love to everyone and thank you so much for holding me up when things appeared very bleak.

OBB