Wednesday, February 27, 2013

When mommy got sick

Hello everyone,

It is me OBB. It has been a tough start to the week for me - caught some crappy flu over weekend that totally knocked me out. There is nothing worse then being stuck in bed before you actually have to be "stuck in bed" for a month. I was so frustrated and was furiously trying to still get all my work done. That plan obviously went to the pits.  I think my oncologist put it best when she called me yesterday after checking me out earlier in the day for any dangerous infections and said "Are you okay? Ok I know you are okay but are you really okay?" Hmmm... tough question. I am functioning - I wake up every day, do the same thing, I find things to laugh and smile about every day and I feel like hope is alive and well. So yes I guess I am okay but I am oh so tired and my body is just breaking down.  And I could think of about a million other things I would rather do then get bones removed and replaced with metal. So I had to listen to my body and finished work today in order to focus on getting myself healthy and ready for this surgery which is now days away. Tomorrow we go in for a full day of pre op tests and meetings with my medical team. I might actually be given some clue as to this whole mysterious procedure that I know so little about which will help us plan the next 4 weeks of our lives much better. And did I tell you that Captain AC (my mom) will be coming over to join in the rehab party!  So now I will look forward to a weekend to rest - get a pedicure, be with my husband and daughter and enjoy my mobility before the real work begins on Monday.

Something that has been weighing on my mind alot since my last entry has concerned my daughter. I have written alot about her and how central she has been to my attitude towards this whole cancer experience. She makes me suck it up and just be what she needs most - her mommy. And I succeed in being that...most of the time. The last time we went through cancer, she had just turned one and we didnt even think about informing her about any of it. It wasn´t relevant to her nor could she understand. Of course she noticed differences in her mother and what I could do for her but it just isn´t the same as now. She knows I am different from other mommies now and that I have pain. She gets distressed when I can´t get out of bed or I have to go to the doctors. And she takes her toy medical kit out alittle too often to give me a routine physical. But at the age of three do I really want to introduce her to the horrific word that is cancer? I feel like it is too early and that it might just be scary. One of my earliest childhood memories of sadness was when I was about the same age and I woke up early one morning to find everyone in the house crying. My grandmother had died of a heartattack the night before and everyone was grieving her. With my limited understanding of the revolving door that is life, I just started to cry along with everyone else because I didn´t know what else to do. I didn´t understand it. So I feel that maybe it is too much to tell her what is happening in great depth. I will tell her that mama needs to have an operation to fix her ouchy and wont be able to pick her up for awhile but that it doesnt change how much I love her. I just want to be there for her at the end of the day and she wants to be with me in any way she can. I guess I will need to find the little things that we can share while I recover like Eskimo kisses, puzzles on the bed and watching Tinkerbell together. I often think about her, years on, reading this blog herself. Seeing first hand the trials we went through as a family and also how she was the ray of joy and hope for me through the darkest days. So I guess I have my answer - I want to maintain her innocence just abit longer. It is a cold hard world out there and I dont want to expose her to it any earlier then I need to.

I thought it was fitting to put in an excerpt from the book "The Year of the Pale Sunflower" by Silvia Roncaglia and Cristiana Cerretti. This book was written by two breast cancer patients who were also moms, to help children deal with their parents becoming ill. One of my surgeons brought this book back for me from the European Breast Cancer Conference last year and I recommend it to anyone facing a similar experience. Facing cancer with young children is a different experience all together - you need different strategies and ways of explaining things. But in the end we all want and need the same thing - for our families to stay the same - intact and together.

"That´s it," Mum explains, "nothing really belongs to us. You are my children because I brought you into the world, but you belong neither to me nor to Daddy; you belong to life, which is much bigger then we are. And Daddy and I, we too belong to life, just like the sunflowers, the moles, the bees and the everything. And this life, so vast and mysterious, turns in cycles; there is a time to plant and a time to harvest, a time for summer and a time for winter, for the flower to bloom and the mole to eat its roots. There´s a place for a different, pale sunflower too. And there´s a time for sickness and a time for health. "

Right now we are experiencing our time of sickness but the clouds will eventually clear and the sun will shine again and the flowers will bloom. And just like that - a new chapter begins for us.


Friday, February 22, 2013

The Bionic Woman

"The most beautiful people I´ve known are those who have known trials, have known struggles, have known loss, and have found their way out of the depths." Elisabeth Kubler-Ross

Another week has gone by and we know more then we did the last time. Progress is good. We have a plan of sorts. Plans are also good - they bring some sort of shape and order to chaos. I am good at creating chaos and catastrophising but I am also good with plans. I love them and they give me a sense of control - I feel safer, less afraid, and in forward motion. I have spoken many times previously of the wait involved in the cancer experience and that just kills you sometimes. All you want is to know your battle plan because every idle day that passes allows your enemy to tread further into your territory and you don´t want to give up an inch. So I have been waiting 2 weeks to find out what will happen since we were told it was the big C. That is a long time to think of the worst and draw your own conclusions - a truly dangerous exercise. But my wait has been filled with a job that I continue to try and do on a full time basis and juggle a busy family life. Some people think I am mad to be working right now but my job is one of the few things that keeps me feeling normal these days. I go there every day and am happily distracted by deadlines, meetings and people. I am still me and not the patient. Unfortunately I am slowly losing my cancer anonymity there which was something I so appreciated. I find that one questions leads to another and suddenly I feel that I need to tell people what is happening. I was never good at lying and as you all know - I pretty much live my life openly and share freely. I plan on hanging onto to this normality until the bitter end when they wheel me into the hospital! I have worked too damn hard for this job to give up now and you know what? I will be back in it before you know it.

So on to plans...Breaking news - I am going to become the bionic woman. Yes seriously. I will be going into the hospital in about a week to undergo a rather large and extensive chest operation. They will be trying to rid me of any lingering nasties and in doing so must also remove some parts of my ribs and sternum. Pretty gross I know but hey this is a cancer blog so no one can be that shocked. They will then replace what they remove with titanium mesh which they will shape into a sound structure that will keep my chest stable and hopefully normal looking. Look who´s gonna be the annoying person at the airport that beeps in security! I do find it hard to imagine how this will all happen and how much pain is involved. Honestly? It absolutely scares the crap out of me. How long will it take to be functional again? Drive a car? Cuddle my daughter? Brush my own hair? I will be in the hospital for a whole week which is the longest I have ever stayed and the thought of being confined to a bed sounds awful to me. I am the type of person who only sleeps in my bed. I don´t hang out there, watch tv or nap. It is for sleeping when it is dark out period. And then when I come home, what happens next? I have no clue but hope we will get more then enough info next week when we meet the surgeons.I have tried to find someone in my wider cancer network who has been through something similar but have so far found no one. What does that mean? Is this some kind of weird procedure? It is easy to question everything at this point when so much has gone the wrong way. And the last thing I want to do is go through something as invasive as this but I have to do it. So instead of clincking champagne glasses to celebrate my 2nd cancerversary, I will be assimilating into my own version of the Tin Man. Like everything else I have done. I have to suck it up, walk up to the battle line and run into the enemy camp screaming my frickin´head off. Because there will be a time, some time later, when I will hoist a flag high in the sky and know that I have won. It will come...I just need to be extra tough and extra brave to make it through.

And I would like to give a special mention to my dear friend Anniken who writes a fantastic blog (in Norwegian but google translate isn´t too bad) - Veien tilbake igjen, which means to find your way back again. She is battling Hogkins Lymphoma for a third time in three years and is just starting a stem cell transplant this week. Her strength and positivity is a testament to the kind of girl she is and I am proud to call her a friend. This too shall pass...for both of us.

Thank you again for all the support. I will channel each and every word into getting through this next challenge.

Hugs from OBB

Saturday, February 16, 2013

The Enemy Returns

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along.” . . . You must do the thing you think you cannot do.” Eleanor Roosevelt

Well it has been one week since the big news hit. One week since my world went from being normal back to being a "patient" again. It has been a difficult adjustement and I am generally on the verge of going insane or fighting the urge to smash plates against the wall one by one. Despite the fact that I am still only 2 weeks post op, the whole recovery thing has faded into the background when we found out the bitch was back and had to go into battle mode again. But the reality is that I am in pain, I am tired, I am irritated and I am afraid. Not the best combination for anyone really. I normally have a knack for bouncing back from setbacks and almost always find that extra reserve of energy to get through the tougher parts of the day. However I just don´t seem to be "bouncing back" from this. My emotions go from shock, sadness, anxiety and usually end up somewhere aroundthe crazy angry mode. And you better believe that I am furious at this situation. It is so unfair and unjust. I think I am a pretty nice person who tries her best to do the right thing. But that is the thing about cancer. It doesnt care who you are - it just attacks indiscriminately. So here I am a few weeks shy of my two year cancerversary, waiting to find out my fate again. I honestly can´t believe it some days that one of my greatest fears actually came true. The cancer came back. How did the statistics fairy screw me over again? I was working so hard to get my life back on track and be normal again and it was working which makes the sting of this relapse even sharper. I have often gone to sleep in a terrible mood, medicating myself into a false sense of peace and waking in the morning thinking it all was just a bad dream. But then it hits me - no this is my reality and in some ways I relieve the shock of it with each day. Maybe in some ways I just don´t quite believe it yet. I just want to unzip myself from body and take a break from all of this but it is impossible. I feel trapped at times and can´t escape this beast. And god do I feel helpless knowing my body is attacking itself under my skin. I continually wonder what are my cells doing? And why do they keep going all rogue on me?

Now I ask all of you not to misinterpret my words as defeat. There is no way in hell I would ever give up and I absolutely know that I can and will be healthy and cancer free again. But please understand that if I come across as negative or upset in this post, it is also just a completely normal reaction to an entirely shit situation. It is temporary and it will pass. Because if you know me well, you know most of the time I am captain bloody positivity and look for the good in even the darkest of moments. I will find my light again. But give me some time to get angry.

In terms of the battle plan, well that is still unclear. The circumstances of my relapse are weird which pretty much ties in with my whole cancer history. Nothing has really ever been normal about my cancer. But the good thing is that there is hope. It is at a stage where we can still eradicate it. That is the greatest comfort I can take away from this whole mess. I will take this thing down so hard it wont know what hit it. I will have the right to grow old with wrinkles and grey hair with my husband at my side. I will watch my daughter grow up - go to school, get married and maybe one start her own family. I will be there. And please everyone remember what a priviledge it is to grow old and never fear or take it for granted.

We will know more in the next few days but it looks like surgery is the best option at this point. We need to get everything out that poses a risk. I can´t say the thought of a massive operation only a few weeks after my last sounds pleasant at all however there is no choice. I have to do this even if I am afraid. Chemo will be a last resort option as I only finished my last treatment alittle over a year ago and it hasn´t proven to be that effective in a situation like mine. I am not complaining though as chemo is something I dread. I told my doctor on the phone yesterday, "I can´t do it again. I can´t lose my hair...myself." So for right now, we are essentially sitting in the waiting room - waiting to hear what my team thinks is the best and safest solution to proceed with. It will happen fast and there probably will be little time to process it before I have to dive in headfirst. It is moments like these that I find it tough to be positive, I am fighting cancer a second time in my already too short life and it seems hard to find a silver lining to that predicament. But in true OBB style, I will find something that will help me get through this bump in the road. All of you cheering me on helps immensely so thank you again for supporting Team OBB. I may end up crawling but I will get to that finish line again and hold my arms up in triumph. I know my story is far from over and there is far too much living left in this body. So I will again pick up my sword and reluctantly head back into battle and fight my stubborn enemy to submission. I just don´t do losing.


Saturday, February 9, 2013

Hello C

Hello C.

We have met, but I haven’t introduced myself. I am Mr. OBB. I didn’t think it would be necessary for me to approach you in this way, as Mrs. OBB has done a fantastic job telling you, and us, what we think of you.

For quite a while we have been happy that you had left us.

Now that we have found out that you didn’t actually leave, I felt it was time for me to remind you of a few things.

One - You are not welcome! Although, I recognize what you have taught us over the past 2 years, we were ready for you to go. The lessons learnt are still fresh in my mind and we don’t need to go over them again. I know I love my wife, I know how strong she is, I know what a great wife and mother she is.

Secondly, I would like to remind you of what you are up against. We are Team OBB, we are family, we are friends, we are science, we are too much for you. You are only a spec on an X-ray, in a place you don’t belong.

As for me. I am the spark, I am the knight in shining armour, I am the rock, I am the Cancierge. Our days are sunny and bright. A small dark cloud, like you, is not enough to block out the sun.

Lastly, let me set the record straight one last time before we see you gone for good.

Mrs. OBB - she’s mine, not yours.

Yours unapprovingly,

Mr. OBB.

Tuesday, February 5, 2013

Playing the waiting game

“Maybe you think you’ll be entitled to more happiness later by forgoing all of it now, but it doesn’t work that way. Happiness takes as much practice as unhappiness does. It’s by living that you live more. By waiting you wait more. Every waiting day makes your life a little less. Every lonely day makes you a little smaller. Every day you put off your life makes you less capable of living it.” Ann Brashares, Sisterhood Everlasting

Here I am writing a second entry in under week. Feels like old times again. To be totally honest - I really dont know what I did all that time I was home. I am on my second day of being home alone recovering and I have already logged onto my work computer. I know I am bad! I really don´t do idle well anymore. I want action! I dont want to sit and watch bad TV in my pjs. I want to look at the clock at 3 in the afternoon and think - wow where did that entire day go? But instead I am carefully moving around the house, drinking coffee, checking facebook, watching some real housewives and feeling pretty stir crazy. I can´t even drive to go pick up a yummy cinnamon bun or indulge in some retail therapy (my personal favorite prescription to feel better). What makes this steady state all the more challenging is that I am waiting for something. Waiting is that much worse when you aren´t distracted by other things. That was the good thing about working right up until the day before I went into the hospital - I had so little time to worry. Now all I can do is think.

But I am miles ahead of where I was when I wrote my last entry. I was in a dark place then and the mood has become decidedly lighter since my pain has improved. Major milestone last night was that I could sleep on my side which was so nice. However at 3am (like clockwork the last 4 mornings) I was wide awake and the wheels in my brain were spinning in overdrive. I couldn´t quiet them and I just lay there wishing myself to go back to sleep. Doesnt everything else seem and feel that much worse in the middle of the night?

I now know that my waiting has a deadline. Friday is the day. It makes me nauseous just thinking about it. I remain highly positive and hope it will give us the answers we are seeking. I so badly want to move on from this and i am mere days away from finding out where the road will turn. And you know what I think about? I think about those pathologists sitting in those labs going through my tissue (kinda gross I know from the gory side of things). I have often thought about this in earlier situations where I was waiting for results. What do these people think? In my first ever pathology report way back at the begining, I wondered if the woman who discovered I had cancer thought about me as a person and not a number? Did she look at my date of birth and realise how young I was? Did she think about how shocked and devastated I would be by this news? Most likely no but I still wonder. I know doctors are trained and skilled in distancing themselves from the emotional elements of their jobs - I dont know how else they could do the job otherwise. But I am curious whether they think of me as more then a number? Because there is another woman sitting in a laboratory right now making the call on my fate. Does she realise how much power she wields with her microscope? It gives me a new appreciation into how tough it can be to be a doctor especially in the dark world of oncology. It is not all six figure paychecks, golf games on the weekend and holidays in the sun. It is a pretty tough job. I find it hard to tell people they didn´t get the job so can you imagine telling someone they are going to die. Definitely no walk in the park. I remember asking my own oncologist in a valium fuelled state how she dealt with the tough times that came with her job. Without giving too much away, her response was  "I get to give people more good news then bad in my job. I get to witness their pure joy and happiness." I guess that is what keeps her going through the harder times.

Well I will get back to my trash TV and coffee. Thanks for all the support and love over the last week. I have appreciated and read every kind word so many of you have shared. I hope this time next week, the chains will be cut and I will be free. In the meantime maybe I should take up knitting?? :)


Sunday, February 3, 2013

Post-Op Day 3

I just wanted to write something brief just to let you all know that I am doing ok. I am very tired and in pain so I am not up to writing a detailed entry.

Things went ok. As ok as one could expect when they dig into your chest, taking a bunch of tissue and bone - leaving a hole behind. But of course i know things could most definitely be worse.

I did it hard though and I am still finding it hard today. We went home last night and it just hit me how crap this all is. I kept switching from being utterly pissed off to bursting into tears everytime I started talking about it. I was uncomfortable and everything hurt and I just hated it. This is my fourth time in 2 years that I have had to recover and bounce back from chest surgery and that just isn´t cool or acceptably by my standards. I am so tired of all of this and I don´t want to have to handle more. Sometimes I have these moments when I step outside of myself, look down at myself and body and cannot believe all the things that have happened in a relatively short amount of time. It terrifies me and makes me want to scream. I really feel it this time - the weariness of it all on my nerves and my psyche. I feel like my batteries are out of juice and I need a kick start. I hope it will pass soon and I will start to feel like normal again. But then again what is normal? I have gone into that surgical theatre four times now and keep leaving lighter and lighter. Losing parts of me each time. I dont want anything else to go. It has been enough.

But now as I lick my wounds (figuratively of course as that would be anything but hygienic) and build myself back up, we must wait. Wait for the phone to ring. The call that can change your life.  All I can do now is focus on a positive outcome and hope that I can well and truly close this door and leave this heaviness behind me. There is sunshine ahead...I can feel it.

A fragile OBB