Friday, November 14, 2014

Ain't No Freaky Going On

I will be brief because I am in a rush but I needed to tell you all the good news!

I have no tumours residing in my brain at present!!! Woohooo!!!!

I will be seeing my doctor to go through everything and only got this news from him via text but the preliminary word is that I am still cancer free. Oh sweet baby jesus relief!

Of course I am over the moon with this news but it brings up many other questions that require time and thought. But I wont worry myself over them now.

I am going to celebrate this win!

Happy weekend to everyone everywhere!

Love OBB

Monday, November 3, 2014

Brains, trains and automobiles

So the month of October went by without me being able to rattle out an entry focused on Pinktober. I am really slipping these days as it is the first time in 3 years that I missed out on making a statement about this important month. I did write a short entry on my facebook page and published some never before seen pictures of my head shaving experience.  I think the one of my daughter being hold by her newly shaved mother was powerful. She was just a baby than and had no idea of the struggles her mother was living through. She was just happy to be in her mother’s arms – wrapped up in her love. Things are so different now – I can’t hide anything from her anymore.

So the month of October has been especially hard for me. I have not been feeling well at all and it has made much of my daily life a challenge. Let’s just say things are slipping through the cracks all the time. I have continued to work through all of this and not really missed a day of work despite feeling like I was on the verge of collapse because I didn’t feel I had a choice. At first I didn’t think much of it and just thought all of the symptoms I felt were unrelated and most likely the cause of my insane workload and schedule for a person in recovery. People who have lived through two back to back cancer rounds aren’t usually working full time in an incredibly stressful and demanding job. Or at least they aren’t in Norway! But I feel like there is no choice. I feel so bloody trapped between trying to recover and trying to make up for lost ground. And when you give a little on one end, you feel you lose on the other and thus I am stuck in this endless tug of war against my two halves.

After a few weeks of constant nausea, upset stomach, lack of appetite and taste changes, headaches, body pains and a general weird feeling in my head, I spoke with my oncologist after he had heard through the grapevine about my symptoms. He is always so direct and to the point. “I am going to order a head MRI for you and I will make sure it is done very soon. “ Ahhh…. Are we back to the world of investigations again? He said he hoped it was just my body reacting to an overload but that we couldn’t rule out anything in the brain as the symptoms also were scarily similar to brain mets. I honestly hadn’t thought about it being more cancer until that moment and it scared the shit out of me. Brain mets are so unbelievably bad for a breast cancer patient. It is an immediate death sentence and a fast one at that. I actually had naively thought that my scans in the summer had included my brain but unfortunately PET scans don’t. So no one has checked that place out for the dark passenger and it terrifies me. I keep telling myself that I am fine and that it cant be anything bad. But then the scary thoughts creep in and the googling starts and….suddenly I am making my way down the rabbit hole again. Life expectancy after tnbc brain mets…6 – 8 months. Oh fuck! How the hell do you not freak out about something like this? I actually think my fears are penetrating my subconscious because I had the most traumatic dream on Saturday night where I actually killed someone. An intruder in the house that I attacked with a baseball bat! I can honestly say that I have never killed anyone in the real or dream world and it made me question whether this was related to what was happening in my life.  
So Wednesday is the day I will take a trip to Cancer Town to get a lovely photo of my brain taken and then wait until we know what is happening.   As you imagine I need all your positive thoughts and prayers coming my way so that I can write in my next update that I am still 100% cancer free!!!  So many things swirl around in my head regarding the what ifs and some of them are surprisingly rationale in a crazy kind of way.  You always prepare yourself for every possible outcome because that is one thing cancer teaches you. Be as prepared as you can regardless of the news you here. Never let cancer surprise you again. SO I am desperately hoping that this is all a false alarm and just my doctor being very thorough. Perhaps after this latest episode, it might finally force me to sit down and figure out what to do with my life as this merry go round I am on can’t keep going around.

Thanks for your happy thoughts!! Here’s to a happy met free brain!!


Sunday, September 28, 2014

Coming Back from the Wars

"It was hell to be so tired, and still care." Lois McMaster Bujold, Shards of Honour

I hate when I start a blog on a low note and go straight into all that is wrong with my world. I feel like the nature of all my correspondence recently has also been following the depressed debbie theme and I worry that i am bringing everyone around me down too. I just don't want to be that person who is always negative and when asked how I am doing always has crap things to say. I personally hate talking to people like that myself so I just cannot become that person but I fear that I am. But how do you get around some pretty big issues that are weighing you down tremendously? Do I pretend they aren't there? Is it my fault that I have been chronically ill for years now and am just being honest when I describe what is wrong? It is a conundrum in every sense of the word.

I have been feeling like between a rock and a hard place the last 2 weeks and struggling with some things. First off I got so sick last week and could not even make it up the stairs. I know there is something wrong when I can't even muster up enough energy to read to my daughter at bedtime. That is a sacred special time between the two of us that I rarely miss but I just couldn't do it. Every inch of my body was throbbing with pain and I felt just like I did when I did "sickplatin" last year. Being sick sucks but being sick when you have been sick for so long is even crappier. Your threshold is decidedly lower on what you can handle and I genuinely wanted to scream. Nearly two weeks on, I am not okay and there are no answers as to why. I have had blood tests, doctor visits and even a gastroscopy a few days ago which frankly sucks. I am sure some of you have had it before as we seem to live in a world where stomach ulcers and ailments are commonplace in our hyped up over stressed existence. Well having had most of the more heinous medical procedures on offer these days, this one was downright violent. I felt like a POW at Guantanamo Bay being water-boarded! They forgot to freeze my throat perhaps in the confusion of trying to find a good vein (which is never an easy job) so it hurt. You dry heave the entire time and it is just plain yuck. I signaled twice for them to stop during but of course once you all the way in, you don't come out until you are finished. Seeing as my stomach issues have become far worse in the last 2 weeks, we were wondering what we would find in there. Having been on max prescription anti acid meds for nearly a year now with no relief and regularly feel sick, I was certain something would be there.  But there was nothing to see. No ulcers, no nothing...just a whole lot of stomach lining. So what the hell is wrong? Why do I feel nauseous all the time, why does my stomach burn like hell, why do I feel sick after every meal??? This can't just be normal and I am frankly frustrated. And I am so bloody tired. One of my doctors on the Palliative Ward who met me on Wednesday this week took one look at me and said that she had never seen me look so wiped out and exhausted as I did than. She isn't the only one to remark this as many others have said the same and the proof is in the pudding. I feel like I walking around with weights in my shoes and everything just seems to ache. What is wrong with me??

It has put considerable stress on me and my work as well and that is where I find things so hard to balance. I care so much about doing a good job and despite having been ill, I rarely if ever take an actual "sick day". If I have to be home with my daughter when she is sick, I will work from home and get the job done. Since I came back to work, I have been desperately, if not obsessively, been trying to show my worth there and not be seen as the sick girl who can't hack it. That is one of the real challenges of becoming so ill at a time in your life when you should be rising to the top of your career and everything else coming together. I thought that would have been me too but instead I am crawling up this mud hill and keep falling back a few paces over and over again. I feel trapped because I need to work to make a living and I need to do something that challenges me. But how do I do this and also put my health first? It seems impossible to me right now. It is clear to myself and everyone around me that I am not doing that at all and I am on a slippery slope, gambling on a dangerous game where I wonder if tomorrow will be the day my body just gives up. I know that I am not far from that point but I don't know what to do. I can't just give up and I don't want to. Giving something else to the cancer that ate into my life is not what I want to do. It has taken far too much already but at the same time how do I deal with this? Everyone tells me to put my health first but the reality is that my job isn't one where you can just not show up for a day, a week, a month...And I know I wont survive another absence. So I am stuck in this perineal hamster wheel going around and around day after day, getting angrier, more tired and more confused. What would I do if I didn't have to worry about my everyday commitments? I have some ideas about it but it is a scary question to ask and the fear of the unknown engulfs me. My job is such a big part of who i am and it is so difficult to start to see that maybe I need to be the bigger and more important part. To be honest I find this all scary as hell - contemplating the big questions and coming to terms with the fact that things are not the way they are and I am not the same as I was. Where do I get help navigating this rough road? Just being told to stop working isn't realistic for me. But pushing and pushing to the point where the gas tank is empty is ridiculous but that is exactly what I am doing.

This brings up something I think about often - how devastating cancer can be when it hits at a time like your 30s. I feel like your 30s are the time that the foundation is built from which everything else grows from. You establish your career, you buy a house, you can meet your partner for life, you start a family, and you start to think like an adult.  I know that is what happened to me. So what happens when that grand master plan gets thrown out the window? What happens when you are so ill that you will never get back to the physical condition you were in before so that you can never work in the same way? What happens when you lean on savings to fill the gap due to loss of income because of unexpected illness and your buffer is suddenly gone? What happens when seemingly overnight your partner must become your caregiver and the nature of your relationship sharply shifts away from that of husband and wife? What happens when your young body becomes marred and permanently disfigured for the rest of your life? And what happens when you can't have the family you always dreamed for? That is what cancer can do when it hits at this supposed prime of your life. It is so destructive and ruthless in what it takes from you and is so far from being a gift in my mind. Things are never ever going to be the same for me and I am terrified. Maybe this is how it feels when you come back from war? You are so very different from the person who left to fight and now you must reintroduce yourself back into a life you no longer know how to cope with. Everything is different because you are different and have seen and experienced things no one will understand unless they were doing it right alongside of you.

What I can see now is that the last 10 months, I have been desperately trying to build back everything I lost even if it means putting myself and my wellbeing last. A friend asked me yesterday how I would feel if for some reason all of this intense stress and work resulted in me getting sick again. How would I feel about it? Would any of it have been worth it? The answer to that question is easy to answer but why is doing it so much tougher for me? I just find all of this so god damn hard to deal with right now and when you are exhausted everything seems to much worse.

I want to digress slightly here as I want to address some comments that came out of my last entry regarding fertility and babies. Many of you were so supportive and had many great ideas as to what else I could do. I did have my appointment with the oncology doctor this week and sadly they shot down every single one of my ideas. It was a blow and maybe it is time to seek additional opinions. Getting second opinions in Norway just isn't done. You take what the doctor says for gospel and never question it. But this is so final that perhaps i need another viewpoint.

I have a lot to think about right now. I just need to figure out what the next move will be.

And please don't take my lack of contact personally. I am struggling with everything these days and am just out of energy. I hope you will reach out all the same as I still value the support from my peeps and desperately need a pick me up.

 A pretty wiped out OBB

Saturday, September 6, 2014

A Box of Dreams

"The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realise that the situation is over, you cannot move forward." Steve Maraboli

There is a box up in our attic that has stood on its own off in a corner surrounded by other discarded, unused items...waiting. From the outside looking in, most people wouldn't realize what the contents mean to Its owner unless that owner was me. I started putting things into this box shortly after the start of my first remission. I allowed myself to put some of my dreams away during a time of uncertainty and painfully discarded almost everything else in an effort to rip the band aid off and try to get on with it. Life as I knew it would never ever be the same again. But because of who I am and because of how I always believe in hope, I hung on and believed that maybe, just maybe I would take this box back out of its dark dust bunny existence again.

My meeting with my doctor a few weeks ago obviously reaped amazing results and it allowed us to cross another big tick off our cancer check list. Remission - check check. But something else happened that seemed to be dismissed into the background seeing as how huge the good news was. This was also the day that my dreams were crushed into hundreds of tiny jagged pieces...quietly silenced by the big C. I think my doctor had just been playing along with me and my delusions the last few years as he deep down knew that many of my what if conversations were not at all relevant if I didnt actually survive. Survival was paramount and everything else just "stuff." But this time was different, he gave me straight answers to the things I had wondered about since I first got sick. Before it was all vagueness and skirting around the big issues but now it was time to face the music. I guess I should look at this as a good sign because real answers maybe mean that he actually believes that I will beat this thing now so I could handle the truth. No more pretending to the cancer patient about the big unknowns.

I have always been very open in my blog about the situation with my faulty genes. If not open about pretty much everything.  Not only did I get the lucky boob lottery but I also had ticking time bombs in the form of my ovaries joining in the battle. My body literally wants to attack me and the only thing I can do is cut parts of it out. Barbaric yes? Other options? None. If you are fortunate to find this kind of info out before hand, you are given a chance to plan ahead and make choices without cancer already invading your body. Definitely not easy decisions but everyone wants to be able to do something first because losing all the power and control. Like having all your children first and removing your bits last. Avoiding cancer completely. I wish I had had the chance to do all of these things instead of playing the catch up again. If only I had a time machine...

So the situation is as follows:

The clock is up suddenly as things have changed for me and I need to get my ovaries out after my next birthday. Happy fucking 35th birthday to me! A hysterectomy and instant menopause sounds frickin' fantastic to me! I think in some ways this is scarier because unlike removing your breasts, things actually happen to you that you feel that are really really shitty. How can I possibly be ready to be a woman in her mid 30s with no breasts, no ovaries and no sense of myself as a woman? It just isnt fair and it never feels like any of this ever ends. I keep giving things up and getting so little back in return. It is like there is a proverbial dark monster waiting around every corner after having already beaten the last one to a pulp. It is exhausting to have to constantly face the unknown and lose bits of yourself both physically and emotionally along the way. I am tired of being brave and cracking a joke to make it all seem okay. It just isn't okay.

The second part of the story goes back to my box that I mentioned farther up. That box contained the most special items that I have kept from my daughter's first breath until today. My dream box where I put all my hopes into that one day when I just might take these things out again for another baby. What could it have been? Another girl or a boy? I will never ever know and it makes my heart ache with heaviness and loss. I had been getting more used to the idea of it just being the three of us again but suddenly having the power of choice being taken away from me brings the hurt all back again. This is it for me and god does it hurt like hell. I find it unbelievably unfair that my husband and I aren't going to bring any other beautiful children into the world seeing as how much we adore kids - not to mention what amazing parents we are. But life rarely makes sense and is often unfair so feeling that way is pointless. When I think back to my younger years, I always imagined there being two. I thought it was the best combination and it gave me comfort knowing that one would never be on its own. Growing up in a family of three, I know how comforting it is to have your siblings to lean on and support you. Like when my father died tragically - we stuck together and pulled each other through it. Or (on a much more superficial note) when my sister lent me her bodysuit to wear to the school dance to impress said boy of the month. Who will pull her through the hard times or teach her how to replace the vodka in the liquor cabinet with water? You just dont want to imagine your child shouldering the burden of everything themselves but this is the reality we are living now. I will just have to work extra hard to give her the most loving life she will know and prepare her for life as much as I can.

I also need to stop allowing myself to feel so out of place and awkward when people talk about their lives that are full of extra children, new pregnancies and their own perfect blissful chaos. I feel instantly like an outsider who has nothing to share or say. I dont know what it feels like to look after siblings or how to get three kids out the door at breakfast time and I never will.  I rarely felt out of place before all of this cancer business but now when others discuss the challenges of juggling all their kids and how hard it all is, I secretly want to scream out loud and say how lucky they all are. I will never know what that feels like and I hate the reasons for it. And for those of you reading this who are my friends and have lots of kids, I don't want you to feel guilty reading this and please dont shield me from your lives or filter what you say to me because you want to protect me or think it will make me mad. One thing I never have wanted was for others to modify their behaviour or feel they cant be honest about their own lives with me but just by reading this it might help you understand how I feel and how difficult this is for me. And promise me one thing - please don't tell me about how others struggle with fertility or how others never even get to have one so I need to be thankful for the one I have. One thing I am is thankful for every single gift I have been granted in this life and my daughter is by far the greatest gift. I cherish every single moment I get with her almost to the point of obsession. And I am also fully aware of the pain of others but my situation and circumstances are so very different, most importantly because they are my own experiences, my own sufferings. No one likes comparisons and they only seem to inadvertently minimize someone's pain and circumstance. We all carry around our own pain and heartache so I am just giving you a window into mine.

My husband always tells me that I baby our daughter too much, especially during the last few months. I carry her around when I can and take every cuddle I can get. He reminds me that she will be five soon and no longer a baby. But the truth is, she will always be my baby and I selfishly dont want her to grow up because this is the only chance I am going to get. I cling to the tender moments when I am still the center of her world - a princess in her fairytale world. But soon she will be too big for me to lift - a fact she reminds me will reduce me to tears when it happens. I struggle with this knowledge that all too soon this will all be over and these moments will be just memories like those clothes and toys sitting in that lonely box. That is why I hang on for dear life...squeezing every last drop out of everything.

The reality is that I should have never been born with the wonky mutation that taught my cells to produce Death Star tumours. I should have never gotten cancer once...or twice. I should never have had to remove both my breasts and have to now remove my ovaries. I should never have had to have a doctor tell me that I cant have any more children ever again because it could kill me. I should never have had any of this. But unfortunately there are no magic Harry Potter wands that can make it all better again so all we have is time, grief and the hope that things will be better again. So that box will stay up in that dark corner, suspended in time - its contents made up of what could have been. Memories now and forever wrapped in the most amazing blanket of love.


Sunday, August 24, 2014

Being NED

I am late to the party and I am sorry for that. I know silence after a scan can be interpreted as something bad and I don’t ever want any of you to worry. Most of you will already know by now my news but for those of you still waiting…

I am 100% NED!!!! No evidence of disease again. Talk about bitch slapping those malignant cells all the way into next week!

It is always a shock when you get good news and almost a sort of anti-climax. I had convinced myself the night before and the morning of my appointment  that it would be bad. My husband and I had discussed our game plan the evening before the appointment to prepare ourselves for whatever might be. You never go into battle unprepared as we had previously learned. His worst fear was that something would have light up needing further investigation and mine was that I would be told I was dying. Who is the catastrophist here I wonder?  I kissed my daughter goodbye that morning and wondered again whether this would be the last normal moment between us before my world came crashing down again. So many emotions, so many thoughts brought up to the surface.
But the battle plan was not needed and it appears that our enemy has been killed off. For the first in a while I am starting to wonder if maybe this cancer isn’t ever going to return? I know I can’t totally stop worrying about my silent enemy but I do know that 2 clear scans in one year is one hell of a reason to celebrate. My doctor was really pleased but always the cautious one. When I asked him what it meant to have two clear scans in a row in terms of my future he said that the results were “nice.” What a pokerface this guy has and he even told me that he won a pokerface competition! I started thinking later that evening about how this latest news will influence my long term relationship with cancer. It seems like we are growing further and further apart from one another despite what a huge and all-consuming role it has played in my life for over three years now. Will my life really get past a point where cancer is no longer a part of it? It was so hard to imagine a life like that a year ago…where cancer has no purpose or power over me. It is also scary at times as I worry about having to fend for myself and not use my cancer crutch anymore. Will people suddenly expect more from me and excuse my shortcomings less? I said to my doctor that day that one of the things I still struggle with is that because I look good everyone assumes I am 100% strong and healthy. I most definitely don’t feel that way but after having a year of cancer free living, maybe expec tations will return and I will have to be “normal” again? Maybe this is hard to understand because it isn’t about having cancer again but it is about the long road to recovery that becomes harder and harder for others to understand the further out from the disease you become.  I am scared of failing, scared of disappointing people and scared of not hacking it. Cancer took some of the pressure off temporarily but it is all seems to be returning again and I don’t have the same coping mechanisms.

But enough with the mindfuck side of this whole thing, this is a time to dance on the rooftops and drink bubbles until you can fly. I hope you all join me in this celebration from around the world. I will save another entry to get into some of the other issues that came out of Tuesday’s appointment that are heavier in topic because this entry is solely devoted to saying “I am cancer free.”

From your dear friend,
In Remission

Sunday, August 10, 2014

Game Day

The time that elapses coming up to a big scan is always "dead time" for me. Like a wave rushing to shore that gets slower and slower until it finally crashes in a Big Bang. I am in the slow mode right now and am finding it hard to navigate this limbo until the crash where all things become known. Things have been going really well for me lately and I have finally become excited for the future again without fearing it as much. I have managed to get my crap together for the third time and it feels good. But now as this day gets closer and closer, I felt like time has started to stand still and will remain so until we got through this hump. It is like pre scan, during scan and post scan time periods and right now I feel this genuine reluctance to let myself get really happy about future plans until I know things are going to be okay. I tell people all the time that by thinking this way it in no way means that I am thinking negatively - I am just being prepared for all possible outcomes. It is safer that way at least for me especially considering my track record. I never want to be caught out ever again by that bitch called cancer.

I have found the weekend exhausting and emotional. And my level of frustration over some physical issues is making me mad. I wanted to scream and cry all at the same time last night because of this damn chest pain that has picked up momentum in the last few weeks. I am just so sick of being in pain and of course my mind plays out a dozen different scenarios surrounding its origins. Any change in anything is utterly terrifying. In addition my stomach has been awful and I just feel sick pretty much after every time I eat. Being chronically bogged down by these chronic ailments all the time when I should be in pretty good shape is demoralizing and I cant exactly talk about it all the time because it is boring. But just because it is boring and constant doesn't make it disappear for me. I live with these things every day and my patience is wearing thin. I want to wake up and feel okay. It is so draining dragging this tired aching body around all day and I feel like my happy face often hides the pain. If i looked at myself most days, I would have no clue what I had been through nor what I am still dealing with. That can be the tricky bit - what truly lies beneath. Because I am the last person who wants to look how I feel and I put so much daily effort into looking like the person I hope I will one day actually feel like. However others can think that the outside matches the inside and not realise what burdens i am carrying along in my fabulous handbag.  Some days I feel like my bones are made of glass seeing as how fragile and weak they feel. I actually awake from the pain I feel when I sleep on my side and my hip presses into my mattress. What am I the bloody princess and the pea? But I keep trying and keep trudging on in the hope that all of this will one day be a bad dream I vaguely remember bits of.

For now - it is game day tomorrow and we will have to wait longer this time before we know what is the score. A whole week of wondering the what ifs until we sit down in a white sterile room trying to read the face of my oncologist again. I keep looking at my skin and pondering what is happening underneath. Are my cells behaving? Or have they commenced their own civil war again? One week is nothing and everything at the same time. So if you have a moment for me tomorrow around 10am send me some happy thoughts and here's hoping my next entry will again be nothing but good news!

Love and hugs from a slightly more fragile than normal OBB.

Wednesday, July 30, 2014

About Family

It seems like if you are lucky, you start out your life in love with your parents. They are your everything and are meant to give you infinite amounts of love and support, shelter and nourishment. I was no exception to that and as I have written before, was privy to a wonderfully rich childhood where I never felt deprived, unsupported or unloved. But we all eventually grow up and in that period start to demand our independence and desire to find our own place in this world – AKA teenage hood. We go through a time where we don’t need our family or parents so much and that is perfectly okay. Independence is a natural step in our evolution and most parents value their children’s desire for it. It is as one would say “a developmental milestone.” But what I have noticed in recent years is that the pendulum spins back around and we begin to need or perhaps just want to be with our family more. Maybe it is triggered by starting our own families or other major events that allow us to see what our parents saw all those years ago…what is really important.

I just finished having my mother here for 2 weeks and it was wonderful. Just this morning when we were heading out the door to the airport, I said to her what I would miss most – her company. I have loved having her in the other room, to sit with and have a tea, giggle over silly things from the past, take a walk, get a daily massage…just knowing that she was there when I came home was comforting. She felt the exact same way especially seeing as she lives alone back in Canada. Being intertwined in our little displaced family for this time made her feel good. We both acknowledged how lucky we are that we genuinely like to be around one another as that is definitely not the case for everyone. Of course we quarrel and disagree but more often than not we enjoy being together and I feel a genuine emptiness when she is gone. This morning at the airport, the tears flowed and thankfully I had had the foresight to use waterproof mascara that day (thank you Maybelline). As my daughter and I walked away, I really started crying and my little cherub starting to do the same without truly understanding why we were crying. All she knew was that her mommy was sad and that she should be too. It reminds me of one of my most vivid and earliest childhood memories. I woke up one morning to the sound of crying. I went downstairs to the family room and my whole family was weeping. Being the youngest by 5 years, I was at an emotional disadvantage and didn’t quite understand that everyone was crying because my grandma had died. I was maybe 2 or 3 years old so I just started to cry too just like my daughter did today. It is easier to fall in line than to hang back on the sidelines. Maybe that kind of sums up the idea of family – it is much nicer and far more comforting to be part of something than to exist on the outskirts. I value the idea of family so much more now and maybe in doing so sometimes pushes me to make unrealistic expectations of them. Because that is the other side of it – family can also be shrouded in deficiencies and dysfunctions. It is only natural really for a group of people who spend decades together to encounter some sort of konflicts. We all carry unspoken expectations of one another and can sometimes be overly honest and harsh with one another because “we are family.” We push the unconditional love bit a little too far at times. I do feel that I have learned so much about family from my own and try to instill the same ideals and qualities into team Norcan. You learn a lot about family in times of crisis and I have had more than my share of it these last few years. It is only natural to put far more pressure and expectation on family than friends but the chance for disappointment than becomes far greater. Even family doesn’t always react the way we want or wish and we often put each other onto the highest pedestals. I am not sure what is the magic ingredient here to making everyone happy - maybe it is impossible to achieve. All I know is that everyone should feel safe, included and loved regardless of environment or circumstance because more often than not, we all just want the best for one another and no one wishes any ill will. Because in my view -  life is far too short to quarrel over “stuff.” Unless someone has killed somebody else, you can get past it because the one certain thing is that you can never ever get time back. Once it has passed, it is gone forever. I understand all too well how fragile time is and hate to see it wasted. We sometimes lose sight of the important stuff and more importantly the big picture.

So as you can see I am quite melancholic and reflective in the wake of my mother’s departure. It is so hard to say goodbye especially with so many tough things around the corner. It feels like the fun times are over. The dreaded scan is in two weeks, summer holidays are done and I am already worrying about the dark cold winter approaching.  Talk about looking at the glass half empty! Everything seems so much easier basked in warm sunshine! Again I have no gut feel as to how this scan will go and my body feels quite numb. I know on some level my body is feeling stress though as it appears in different ways like the way I run my tongue across my gums to the point of inflammation, the constant burning in my stomach, difficulty concentrating…I recognize the signs. 7 months have dwindled down to a couple weeks all too quickly. Like I told my mother this morning – I cannot do this a third time. Twice was enough and I am done with interruptions. So it must be that life will just have to continue on for me and everything will be okay. But it does help to remember that whatever will be my mom will always be there for me. And an army of family and friends wielding swords and shields wildly at whatever enemy appears. Because that is what love is – just being there when it matters.

Wednesday, July 2, 2014

Nine Lives

Okay  this is getting downright ridiculous. I just deleted an entire blog entry for the third time in three weeks! I just cant find my groove and I just cant figure out what to write. I know for certain that I want to write but the right words keep escaping me. Maybe my life is just too boring and non eventful now compared to the previous entries that were full of crisis and real life-death moments. The mundane just isnt as inspiring to me. Work, home, tv, sleep...

I just got home from watching my first adult movie in about 5 years and it was a movie about cancer. Uplifting eh! You see - just because I dont have cancer anymore, it doesnt mean I dont want to hear about it. I actually think it is a kind of obsession as I have seen pretty much every cancer movie out there and cried through them all.  It is called "The Fault in our Stars" and it made me cry. Actually it made me cry at a moment when no one else was crying and my tears were oddly absent when everyone else was wailing in the theatre. Different things affect different people. The story is about two teenagers who fall in love despite both being terminally ill with cancer. Definitely not a comedy here people though I did laugh quite a few times from the dark humour. It was this one scene where the main character woke up suddenly clutching her chest and is rushed to the hospital in a scene full of panic and fear. That scene got me...really deep down there. I used all my strength to contain the sobs that were building like a tsunami in my chest. I didnt want to cry but my body was doing everything it could to get its way. The reason behind my sudden reaction? I understood what it felt like to suddenly think you are dying and the scene brought it all back to me. My husband and I briefly discussed this over our recent holiday when I brought up some of my fears. When I pressed him slightly about understanding how I felt - he responded with " Kate - I know. I thought I was going to lose you twice last year. I get it." He is rarely so open and honest about his feelings so when he chooses to bear them, I listen. We both had the frights of our lives and the trauma still lives with us. I see it expressed in many different and new ways. I never used to be afraid of flying but ever since my tango with malignancy, I panic when we take off or land. Not to mention any kind of turbulance. One particular moment when my daughter and I were flying over the arctic at nightime shortly after I finished my first round of treatment, we were hit by sudden turbulence. It was scary but when we dropped suddenly and the whole plane was thrown into utter chaos - people flying, dishes crashing, voices screaming. It was terrifying and I remember thinking - How the fuck can I survive cancer, only to be killed in a plane crash a few months later! Luckily we made it out of that one intact but my palms sweat and my breath quickens when I am airborne now. Maybe it is my automatic way of thinking that takes me straight to the worst case scenario without passing Go that is to blame. Like the first night of our holiday a few weeks ago, I was the only one awake and suddenly my heart starting beating wildly and out of beat. I panicked and realised I didnt know what number to call in an emergency and then even still would they get to me in time? Is this normal behavior?

I have actually felt my hysteria and panic rising as the weeks are going by and as I get closer and closer to that next hurdle. My PET scan is in about 4 weeks and I honestly don´t know where those last 6 months have gone. But my body feels it and my crazy cancer behavior has kicked it up a notch. Just last night I started googling survival rates for women with my disease staging. I hadnt done that in a long time and I am more than aware that it is my futile attempt at finding some kind of info to tell myself that I will be okay. With the absense of actual fact, we go for the next best thing - statistics! But what do these numbers mean to me? Are they supposed to comfort or terrify me? And isnt it funny how the odds differ so widely depending on what you are using them for. A 1% chance of winning the lottery is actually quite good but a 10% chance of  getting a disease often makes most people feel slightly relieved that it probably wont happen to them. So what does a 40% chance of survival mean and does that number have anything to do with me really? When I am already part of such a tiny population of patients across the globe, do these numbers hold any bearing on my future? And if my scan was okay 6 months ago does it mean it will be the same again? I guess if I could choose, I would have preferred to be on the better end of 50 here but I  can hear my biostatistician friend telling me that numbers mean nothing especially in my situation. But then how come I can´t let them go? I am always seeking answers to the questions I can´t know. I always remember one of my favorite oncologists, Dr Sunshine, telling me she couldn´t possibly answer my questions because no one knows but the deep confounds of my body and its millions of cells. Yet enquiring minds need to know now!
The sand is almost all at the bottom of the hourglass now and the next judgement day is fast approaching. It actually hit me today when I was sitting down with someone planning out an event and realised that it would be happening the same week. Bam - the cancer stick bitch slapped me back to reality! It wont be long now until all will be revealed as they say. I try to stay positive and feel silly even talking about the bad stuff but like I told a friend tonight - I have learnt to not put my hopes on anything and try to instead just remain indifferent. Indifference means less disappointment regardless of outcome. There is definitely some comfort to take out of sitting on the fence. Because  when the shit hits the fan twice already, you become cautious. Now don´t get me wrong, of course I dont wat to get cancer again - who the hell would? But I am scared. Scared of what could still happen. I feel like I am a cat who has run out of lives and that things can only go one way or the other now. The gray matter in between is gone and there is so much more to lose or win all over again. It is just so damn terrifying and I get tired of being brave. It still shocks me some days when I think about what has become normal and acceptable aspects of my life. I thought about it when I watched that movie tonight and how so much of it was normal. PET scan - check, central port in the chest - check, thoracotomy - check, crazy toxic chemo meds - check check . How did that happen? How did things change so quickly? Now I just need to hang on and wait for that moment when I can finally exhale again. Hmmm... when will that be? In the interim though, I will be okay. I always am. There is much to look forward to tomorrow.


Sunday, May 25, 2014

Too Old to Dream

“Never allow reality to get in the way of your dreams.” Mark W. Boyer

I just spent a lovely weekend with a dear friend at a spa by the sea. It was definitely something I rarely do (if ever have done) and was of course not my initiative or idea. My friend surprised me months ago with the weekend and thought some rest and relaxation was just what I needed. She could not have been more right especially after the past two weeks I have had. I have not felt good at all. The levels of exhaustion have been so consistently high that I have repeatedly fallen asleep sitting up on the couch after dinner this week. I have awoke most mornings with awful headaches, nausea and a burning in my tummy. Feeling crappy always makes me nervous. It is never just about feeling off...the cause can always been far more sinister. I actually remember thinking this week that if I just put my head down on my desk for a few moments, I would be okay. It has been hard and I am not one to give in very easily to tiredness but I may have met my match. I have genuinely been afraid that this week, I had crossed that irreversible threshhold where I could not recover from and that I had simply pushed too hard and my body would just say no. However I feel slightly renewed after 2 days of only worrying about myself and floating around in the water. I love the water and can still frolick around like a dolphin, doing headstands and synchro moves. Just the like a kid. I also laughed like i hadn´t in months. I laughed till I cried and it was so therapeutic for me. I don´t think I laugh enough. Not anymore. I need to do it more.

So with all this time and space away from regular life, it cleared my head and I was able to really think again. I was watching a documentary about a young girl who was a world ranked surfer and how she came to be who she was (for those who are interested it was called Zero to 100). In the culminating moment where everything came together, I felt emotional and had to hold back the tears. It really brought me back to my own childhood when I was myself a competitor and all those amazing memories returned. I loved that time - the training, the discipline, the competititon, the inspiration. The feeling of touching the wall first, looking up at the time board and pumping your fist in the air in sheer elation. God that feeling was addictive. I took so many positive things away from that time in my life and account some of the bravery and toughness i put into my cancer treatments from that period. I had been taught how to not be afraid and how to work through the pain -  Two traits that i think can be very relevant and applicable in the world of cancer. But after the movie ended, I also felt sadness and questioned where my life was today. Watching that young girl beginning her journey to greatness with the world at her fingertips...she had so much to accomplish and so much time to do it. Where was I in terms of my path to greatness? I would never be back in the pool at that level nor would I have the chance to go to the Olympics. Furthermore my career is okay but I am far from making a global impact. Let´s just say that I won´t be finding a cure for cancer anytime soon.  My body feels so old and weathered that i worry about what little left it has  to give. How do I make my life count and matter? Or are the golden days done? It made me very sad thinking that maybe the best parts were indeed over and that the dreams I had had as a little person were only going to remain dreams. Is this a pre mid life crisis? Is this a realisation of the simple progression of life? It really made me think about how I live my life today and whether it is something I am proud and happy about? Of course I am not thinking of my family within these contemplations because  they are by far my greatest achievement. But this has more to do with me. I asked my friend "Is this it? Are the best parts done for us?"  She echoed my fears in that we both agreed that the time for dreaming was perhaps over now and reality had set in. As we get older, responsibility and practicality become paramount - there are bills to pay, savings plans to make  -  security trumps possibility and every day becomes the same. So tell me the truth - how many of you still dream big? I remember as a little girl, when I was trying to go to sleep at night I would start my own dream in my head about something I wanted to happen that made me happy. I don´t do that anymore and haven´t for a very long time.

I also started thinking about my daughter in that moment and how her entire life was in front of her. She had the power to do whatever she dreamed and try out what she wanted. In a way I envied her and the endless possibilities that lay ahead of her. Everything untouched and untapped. At the same time, I felt so excited for what she would be and whether like me, she would find something she was so passionate about that it made everything else feel irrelevant. The idea of her finding that special something and excelling in it and being able to watch it all unfold for her makes me so excited. And I don´t mean this in the way that I would be living through her so that I could achieve the things I wished that i had but rather being able to witness how fantastic and wonderful her life will be. I had my time and it was simply wonderful. Now it is her turn. Like most parents, I have big dreams for her and I believe in her abilities. She is my daughter so she must be wonderful and talented right? Just thinking about the future, her future makes me happy but also fearful. Suddenly it brings me back to my present reality which still remains so uncertain. How tragic would it be for me to miss out on that moment when she falls in love with something. I want to be there to share in the magic. So support her, love her and be there for those moments, cheering her on in any way I can. The idea of not being there just makes me feel sick. I know I need to think positive and imagine the future the way I want it to be and not give into the fear however it can be hard sometimes when you want to live so very badly. It is hard to avoid the things that threaten that vision from coming to fruition. Maybe I feel that time is going too quickly and that the next scan is coming up again too fast. The fear is returning and the monsters are creeping up out of their lairs. As my friend said today "It is really about being in between life and death and not knowing which way it will go." It is not so often that one is faced with such extremes in one moment where you are prepared for it. Often it comes as a surprise whereas here, I will walk in there and know that things will be one way or the other. It is so finite and so unbelievably terrifying. I tell myself everything will be okay and even feel silly allowing myself to imagine the worst let alone sharing it with all of you. I worry some of you think I am catastrophising and allowing myself to give into the fear. I mean no one has told me I have terminal cancer so why worry about it right now?  Shouldnt i only be thinking positive so that things will indeed go that way? Unfortunately the reality of these intense experiences are anything but simple. It is like being on this boundary between one world and the other without knowing which side you will fall. The lack of control and power over it all is excruciating. It always comes back to the same things. I don´t want anyone to watch me wither away into nothing. I don´t want to die in horrific pain. I don´t want to look in the mirror and not recognise the reflection. I don´t want the people I love to have to say goodbye. To this day, I can´t not cry when I think of getting to a point where i would have to say goodbye to my monkey. The thought is just rips my heart right out of my chest.  I don´t want to have to forfeit my future. I have worked so hard the last few months moving forward and farther away from this nightmare and it has worked. I am not consumed anymore.  I allow myself to think about tomorrow and be able to continue on with a life that isn´t saturated by cancer. So the thought of going back to that awful place is just so horrific and nauseating. It is settled then...nothing will change. The only place I am going is forward to try and figure out some dreams for tomorrow. I am far too young to stop dreaming.

Sunday, May 4, 2014

The Elixir of Life

I am starting to remember why I stopped writing for well over a decade. Life got in the always does. When I was a teenager, I wrote pretty much every day and if you were a close friend of mine at that time, you would be familiar with my "poetry phase." I was very good at chanelling my teenage angst and broken hearts into 12 lines. It was always easy for me and I could whip a few poems out in less then an hour. But as things got busier and I got older, the inspiration and ideas stopped. There were a few revivals along the way but they were the product of deep grief and were fleeting. I remember trying to write something for my father´s funeral which had about 200+ people in attendance. I felt so much pressure to write something befitting the man he had been (simply amazing) and I wanted it to be perfect for him and for everyone that was there. I had a bad case of writers block and every draft I started I couldnt finish. It wasn´t until the morning of the funeral that I just picked up a pen and started writing. The words came so naturally and freely and of course it was absolutely perfect in every way. I made him proud that day...I know it. But these days I feel like I am blocked again - bogged down by the stresses of every day life. I don´t have very much down time these days and when I do I am so beyond exhausted that the last thing I can imagine is sitting down to write something worthwhile. It is kinda sad in a way because this blog has been so cathartic for me over the last three years and I don´t want to stop writing. Cancer was just a part of the story and I feel there is still so much to tell. Even today, I sat down in front of the screen and had no idea what I was going to write. I rarely write in a such a haphhazard way. I always used to get a blog idea when I was walking home from dropping my daughter off at daycare every day or when I heard an especially moving piece of music. But these days the ideas and the inspirations are nowhere to be found and I am questioning how I allowed things to get so chaotic again so quickly.

How rich and full is my life if I can´t even find time or space to really think and process what I am feeling? I don´t think finding an answer is easy.  I actually have been thinking alot about my cancer experience, specifically my treatement, the last few weeks. This time of year always stirs up emotions surrounding my two journeys with cancer. Three years ago, I was recovering from a horrendously painful mastectomy and coming to terms with the approaching start date of chemo. It was alot to process and I remember how innocent I still was at that time...being terrified but having no idea what was in store for me. And then this time last year, my chemo had started this past week. Just thinking about these things has brought on immediate nausea. The hospital room that got so warm when the sun shone through the windows, the clear IV bag that looked like water but was a harbinger of something so toxic and horrid, even a bowl of oatmeal brings on stomach flips because it was something i ate at the time. Thinking of being back in the place brings on such dramatic physical and emotional reactions all of sudden. I never really had that many adversions from my time in treatment despite the warnings of not eating your favorite things or listening to your favorite music during chemo but suddenly it is all coming on very strong. When I listen to Ellie Goulding, it takes me back to those rides up the road to the hospital for treatment or a check up. When I look at the nutri shake drinks in the pharmacy while waiting in line, I am reminded of how I survived off them for weeks a time. So many memories of that time that take me back to a dark place. Maybe I am finally starting to process everything in a different way and instead of simply being in " survival" mode, I am starting to reflect on everything in an effort to move forward beyond it. Because I honestly feel so much less like the "cancer girl" as I move further and further away from that last end date of treatment. I am now working almost 100% in my job and getting good results. I rarely visit the Cancer Centre anymore and I almost never talk about cancer in normal conversation these days. Perhaps that is why I am finding it so much harder to write anything of substance in this cancer blog. I am definitely in a state of transition and experiencing something new. It is a tug of war at times - between my weather worn/exhausted cancer self who still can´t find the energy to do it all and the confident, self assured woman who wants it all. My expectations for myself are still a far way off and in trying to do everything, I often collapse. I still feel like i am making up for lost time and that I need to try and fit everything in that I missed out on. I do find that the one area that is suffering the most right now is my ability to socialise. I just have nothing left to do it these days and sincerely hope everyone understands how hard this balance is to maintain right now and that i will come back to you all soon. Please don´t forget that even though I look great and appear to be doing it all, I am a long way from 100% inside. My clothing hides the morphine patch on my arm that I wear to control the daily pain I feel and the smile hides the sheer exhaustion I am feeling every day. And this anger...I don´t quite know where it is coming from but I feel it alot. I also feel more out of place in many situations and just can´t be " the outgoing and happy" person I used to be. That is something I really notice these days...maybe I am just never going to be the same person I was before after living through these experiences.

So as most of you can see, my life is definitely on its way to normal with a few things left to work out. But just as the medicine I take daily and the scars I see everytime i get out of the shower remind me of the journey I have been on, I get these jolts that take me back to what has become such a normal part of my life that in a way has made me forget it was ever any other way. Just yesterday I was telling someone about our summer plans and then suddenly I realised that my next  scan was not that far away. I have worked so hard the last few months to establish this life that was no longer interrupted by cancer and now it is just around the corner again. Having had a taste of "normal", I just don´t want to go back there again and of course I never forget about the what ifs. I taunt myself with the fear of things not going the right way and what if this dark passenger is back. It is just so damn terrifying to fathom after having worked so hard to forget. Because I have no idea and no control over what is happening beneath my skin and it is so hard not to imagine that that pain, that nausea or that loss of appetite is from a monster lurking in the dark corners. I don´t think i would even go to my doctor right now if I felt like something was up because I don´t want to interrupt this happy holiday away from illness. Do I sound crazy or reckless saying that? It is kinda of like wanting to stay at the party even though you know your parents wanted you home 2 hours ago. Instead of checking your phone for some threatening message, you ignore reality and just continue partying! I feel like that. I just want things to keep going the way they are where i can imagine the next promotion at work, where I can think about what kind of woman my daughter will become and where I can  dream of a life where I can gracefully age into an old, wrinkly but happy woman with her equally wrinkly husband beside her. Because in all honesty I didn´t allow myself to think about these things this time last year - everything was shrouded in fear and just thinking about these things would make me cry. It is like I have tasted that elixir of life and I don´t want to go back. I know how important every minute and every opportunity is.

Just like the character Emily from Thornton Wilder´s play " Our Town" who says:
"Good-by, Good-by, world. Good-by, Grover´s Corners...Mama and Papa. Good-by to clock ticking...and Mama´s sunflowers. And food and coffee. And new-ironed dresses and hot baths...and sleeping and waking up. Oh, earth, you´re too wonderful for anybody to realise you. "

I realise how wonderful life is and I don´t want to lose my firm grip on it. Opening the curtains to see a beautifully clear sunny day; Coming in to kiss my sleeping daughter goodnight and whispering in her ear how much I love her; Thick fluffy pancakes with real syrup; My husband surprising me just because; Surprise parcels in the mail; Hearing from an old friend; Thinking of memories that warm your soul; Knowing you have tomorrow and the next day, and the next. These are just some of things that make me thankful to be here and have a chance at life again. So please Mr Cancer...stay away.


Saturday, March 22, 2014

Putting your Health First

Again it has been about a month since my last entry and it is clear to everyone that this blog is proving to be more and more difficult to stay on top of. This is what happened for over a decade when life got in the way of doing what I love and my creativity dried up when other parts of my life picked up into a frenzying pace. It was only when illness forced me to slow down, that my love of writing was able to come alive again. But I don't want this blog to end because life got in the way, my journey is far from over so I will write when I can and keep you abreast of the important stuff.

I have been thinking a lot about something that I have been told hundreds of times over the last three years. It is something that friends, family, coworkers, my medical team and even strangers have told me over and over. "You must put your health first" they all tell me. Such simple advice but oh so difficult to actually do. Because honestly how many of us actually do that on a regular basis? Some of us smoke, others binge drink, most dont get the required exercise or your 5 a day and I am certain we all sweat the small stuff much more then we ought to. The truth is that life gets in the way of putting ourselves first more often than not. I am the first to put my hand up and say that I am terrible at this. And please don't think that I am playing the victim or martyr card here because I am not but rather I am just being honest. Despite having been seriously ill for about three years, I still push myself to complete exhaustion because I want to be the best mom, the best employee, the best wife and the best friend. But you know what? I am failing in many of these areas right now.

After over two months away from Cancer Town, I rushed from my last meeting to the car to make it to my palliative dr appointment in town. It felt weird walking through those two doors again and I felt so so so far away from that person who used to walk these corridors pulling an IV bag behind her. I was different now - my hair had grown enough so that it was creeping down my neck, my cheeks were rosy and I was dressed like a businesswoman ready to bust some balls. No one could have guessed that this woman pushing the elevator button was actually a patient - maybe a pharma rep or something! It was empowering. But when I arrived in the waiting area, I collapsed on the sofa in utter exhaustion and the receptionist who immediately recognised me remarked how it had been a long time, that I looked very tired and that she had cold water for me to drink. And you know what? God I was. My levels of tiredness have become far more complex and layered since cancer - there is the normal crap feeling, being very tired, excessively tired, ohmigod my whole body is screaming out in pain tired and then tiredness that actually stops me in my tracks and forces me to submit to it. I never even experienced these extremes after my first cancer round but the second one has been much more dramatic. I know discussing the different levels of tiredness can be so bloody boring and I hate talking about it myself but it is unfortunately relevant in my life right now. But back to the doctor - she could see how worn out I was and that I was running on empty. I described how I was feeling - the feeling of being out of control and completely restless, the fear of what could still happen, my obsession with trying to do it all and the fact that it was just not working. She actually understood me and the person I am. She knew that I was just not one of those people who could easily prioritise mysef and my health. No matter what I had been through, I would still try and do everything like I had done before and if not try to do even more. I talked about my obsessive need to try and make up for lost time despite knowing full well that I couldn't fit 6 months into the last 5 years that I felt had been taken from me. And the feeling of guilt that despite having been through two near death experiences, I still didn't "get it." That is the problem I find - I am very good at articulating how I feel in very open and honest ways and using fancy terms to describe what I am going through like PTSD, anxiety disorders, catastrophic thinking, etc...and it gives people the false impression that I am completely in control of myself and my life. The truth is that I am not. I am killing myself at work and doing so much more then I should be because I am so desperate to feel like I am contributing and adding value and because work is actually a very big and important part of my life. But on top of that stress, I also worry about things like a bump in the night and have been known to go upstairs and check multiple times in a night. I get scared when my husband or daughter goes out alone because of the fear that something might happen. I make decisions based on fear every single day. I get angry when people dont stay in touch yet I simply dont have the energy or concentration to be in regular contact with family and friends and I feel so guilty about it.  And I push through the barrier of exhaustion many many times a day. When you list out those things suddenly it doesnt look like someone who is in control of things at all.

That is the thing with cancer that is often overlooked. We are so well looked after during treatment and we exist in soft cocoon like structures that protect us from the harshness of the outside world. People excuse our shortcomings and no one expects anything from you. Your focus is to survive and that is all. Everyone around you just wants to help and make things easier in any way they can. And as the patient, you have so much more time to do things that make you happy - be with your friends and those you love, have lazy mornings, do yoga and meditate. Basically it allows you to take time for yourself and it may be the first time in your life that you have been able to do so. There are so many services available for you to use and you almost never feel alone. But what happens when that treatment is over? Who looks after you then? I really think that life post cancer can be a truly terrifying place and there is little thought or effort put into helping people transition back from it. You just dont turn back into the person you were before and in most cases you never will be the same again. In cases of extreme treatment, you can suffer from a lifetime of side effects ranging from the physical, emotional and psychological.Not to mention the fear that it may come back - something I understand all too well. For me - in both of my cancer cycles, I had to proactively seek out help as there was very little offered to me and I felt like i had to navigate this road I had never been down mostly on my own. Often times, I had to convince mental therapists that I needed help dealing with post traumatic stress and that my fears, hypervigilance and anxiety were hindering my day to day living. My transition back to work was also pretty much lead by myself as I navigated the choppy waters of being the woman who had breast cancer...again. No one knew what my capacity was and many were clearly uncomfortable being around me or blurted out utterly innappropriate things across the salad bar at lunch. It was awkward and difficult as I tried to figure out what my role was again and how I could once again feel like I was contributing towards something because no one wants to feel like "dead wood." It can be really hard to try and juggle all these things yourself especially as you continually worry about that next scan and what will come of it. Because despite a huge victory, I know, my doctors know, my husband knows that we are so far from out of the woods and we are still dealing with some less then ideal odds. I live every day with that uncertainty. I did tell my doctor yesterday about that fear. How I am working so incredibly hard to build a life up again for the second time yet am continually thinking of what will happen if something goes wrong with the next scan in the summer. It is exhausting having to keep building, to keep going. I kind of think of it like when you build a sandcastle too close to the waters edge and every time the tide creeps on up on you and washes your castle away. But unperturbed, you begin to build it again and hope that this time you will have judged a safe distance. I feel like I am on that beach sweating and swearing my way through a second attempt at building the best and brightest castle that will stand for a very very long time. As i have mentioned so many times before - you just have to hope and never give up in this cancer game no matter how tired and frustrated you get. My castle will rise again.


Sunday, February 23, 2014

Life After Cancer x2

So I finally feel like I am progressing forward and I am paddling further and further away from that island I call Cancer. Kinda like when you are driving away from some place and you keep looking back - watching it get smaller and smaller until it completely disappears from sight. Of course I can still see it and I know it will be there for a very long the background of my life - but I am finally allowing myself to make plans for the future without fear and am able to talk about things I never let myself say out loud. It really is hard to believe that as I approach my 3rd Cancerversary next week, I am in a good place. It is impossible not to look back over the past three years and not think about all the things that have happened and how those experiences have dramatically altered who I am, how I look and how I live my life today. It´s mind blowing really when you allow yourself to process everything.

Many people make huge life changes after surviving a cancer diagnosis. They quit their job and open their dream B&B in Tuscany or they adopt a completely organic clean lifestyle in every way. Despite the fact that I still eat sugar obsessively (often before 7am!), haven´t thrown caution the wind and followed my dreams and still worry about everything big and little, I am definitely a different person from the woman who walked into that hospital room nearly three years ago. I have learned many lessons and things about myself, about those around me and about life in general. The list is long but if I could highlight the biggest things they would be these:

Time is really the most valuable commodity we have. It doesnt stop for anyone no matter how much money or power you have so use it wisely. And don´t put off doing the things you really want to do. No one ever said on their deathbed - Damn I wish I would have worked more!

Forgive those you love if they have hurt you because at this stage of life, people aren´t going to change that much more so we need to accept them for who they are and enjoy the time we have with them.

Don´t make the people you love feel guilty because everyone is doing the best they can. There is never malice in love so don´t expect the worst in people you know only want the best for you.

Always acknowledge others pain and offer empathy.  There is nothing worse then feeling like others dont get how awful you feel - something especially key for those who are chronically ill. I often feel that not a day passes where I don´t have pain or feel poorly and I know it must be frustrating to hear about it all the time but it is also important to recognise how frustrating it is for me too. Not feeling acknowledged just makes one feel worse. I ain´talking about catering to every whimper but just try listen.

Even though you can be afraid of something, silence is far worse then simply letting someone know you are there for them despite not knowing what else to say. Words aren´t always important - but knowing that you aren´t alone is what matters most. I know cancer and serious illness can scare people to the point where they cant even talk about it and want to just run away but think about how you would want to be treated if you were in the same situation. Just validating that this person is going through something intense and difficult is enough - as is a simple "how are you." Ignoring the elephant in the room doesn´t make it disappear.

My bullshit meter is significantly lower then it used to be. I just can´t fake my way through things anymore. When I am angry, I am angry and I will most likely tell you about it and then want to move past it to a better place again.

Grieving loss isn´t just about losing a person.I am grieving the loss of my own innocence, the loss of my two breasts and what I define as feminity, the loss of just being a new mother, the loss of a future without fear of an early death and the loss of a life that I always dreamed I would have. Cancer constantly changes the goal posts and you must adjust your dreams and expectations accordingly. When I thought about the life that I would be living today 4 years ago - I never could have imagined that it would be what it is now. Of course there are wonderful parts of it but I am still grieving many things that I feel have been taken away from me through this experience. Like the fact that I will never have a normal body ever again or that I don´t really know what this cancer will decide to do.

Marriage is not easy. It isn´t easy for anyone (and people are lying if they say otherwise) and it is infinitely harder when you throw an extra set of obstacles into the mix - like moving to a new country, having a baby and then living through cancer together twice - all in less then 5 years. Talk about intense. Cancer has really enabled me to uncover the truths about how to keep a marriage alive. When roles shift from husband and wife to patient and care giver, it really upsets the balance and can be challenging to find your way back. The focus is on the sick person and that can be difficult for the one who must be the rock, the support, the one who has to keep everything ticking over and is rarely asked how they are doing. Many relationships get infected by this disease just as it infects the body and never make it back. You just can never put off the needs of each other regardless of what is going on in your lives. Each person needs to feel loved, listened to and acknowledged - regardless of how tired, frustrated and fed up you are.

Anger. Cancer has made me so much angrier. I get angry at people, situations and things and I am far more vocal about it. Some of it comes from my anger over what has happened to me and how unfair it all has been and I guess it has spiralled out into other aspects of my life. When I see others just not getting the big picture or lacking perspective on things, I want to shake them into reality again. This is not always welcomed as one might imagine but I can´t help doing it. We all complain about so many things and in the process, stop being able to see the really awesome things in our lives. It isn´t about who owes you what (am not talking about money here) or what you feel entitled to, because if you have that viewpoint in the first place, no one will want to do anything for you and you will just become more miserable. It isn´t about what you haven´t done for someone but rather the things that you have done. And it isn´t about the things you do wrong but again - what you have done right. We look for the negatives so often and are so overly critical of ourselves and those in our lives. It is just a sucky way of living and I just can´t be around that negativity as much anymore. Best thing to do is to focus on what is right in your life and you will probably be alot happier because of it.

Being a Mom. Cancer has made me into the most amazing mother that I could have ever imagined being. I put every ounce of energy that I have into being the best version of myself for her. It doesnt matter how awful I have felt or how terrified I have been, I made sure that I was just there for her. In every moment. Cancer took alot from me but it also gave me the gift of extra time with her and it created such an unbelievable relationship and bond between us. She accepts me for who I am and understands without me having to explain. I am her mother. I love her. I brought her into this world with breasts that nourished her and now I no longer have them and to her that is perfectly okay. For her the most important thing is that her mother is here for her every night to tuck her into bed, read her a story, kiss her and tell her I love her to the moon and back.

So my treasure chest of knowledge and insight that I have been able to take away from the single most horrific experience of my life is endless and worth its weight in gold. Maybe that is one of the biggest lessons I have learned...That there is always something good to be taken from every experience you live through or survive, be it good or bad. You just have to be able to see it.

Three years on, two diagnoses later and I am still here...a better version of myself.

Go hug the people you love.


Tuesday, February 11, 2014

The Long Road Back

This may be a new record - days short of a full month without an entry! I think after my last one which was so massive and epic, I needed time to let it all sink in and process. Hearing that news was such a shock and signalled the end of one chapter and the beginning of another. Both my husband and I took some time out  to adjust to the news as we had both prepared for such a very different outcome. No one wants to hear bad things but when you think something is going one way, it can rattle you to hear something else. That is one of the many things I have learned from my waltz with cancer - it totally fucks with your head and makes you react the opposite of normal. You can feel slightly lost because suddenly you actually need to get on with your life. No more pauses or stops, I have to pick up the pieces of my life again and start rebuilding the foundation  brick by brick.It can be scary too - cancer can also be comforting in a weird way because of the routine nature of it and the lack of expectations. When you have cancer, people expect very little of you and let´s face it - people are extra nice to you and put very few demands on you, and that can be quite nice. Now that everyone knew that I was cancer free did my cancer safety net disappear like all those cancer cells did? I know and all those cancer survivors know that my journey to recovery is still far from over and just because the cancer is gone, the person I was before may never return fully. The treatments I have been through, two rounds so close together, ravages your body and my doctors have said I may never be the same again. We don´t know but I know the limitations my body still has and I worry that others will quickly forget that the healthier and better I look. I hate myself alittle as I read that last sentence back because it sounds so weak and cowardly. Like I am already making excuses and still living through my cancer even though I dont have it anymore. A very dear old friend perhaps put my thoughts to words best when she wrote this to me last month before we even knew everything was okay:

"Know that when that scan comes back clear, only then will you allow yourself to move past the "girl with cancer" phase of your life behind and be who you are now. But you don´t have to entirely leave her behind as she´s made you who you are today...Nor do you have to leave behind all your friends, support team and other methods of support that have gotten you through this phase. As the next phase of life develops, other support systems will come into your life and the cancer ones will fall further and further back into the periphery. You don´t have to automatically be completely without them. Right now you can´t imagine life without them as they have been your life. But just look at how well you´ve adapted to and thrived in all other phases of your life. New phases brought new wonders into your life. The only reason you dont know who you will be when that scan come sback clear is because you haven´t allowed yourself to dream it yet. But know that you will know what to do and who you want to be. You will walk down that road and it will be more than interesting enough to keep us all reading. "

She really captured it all so perfectly and so eloquently. Just some of the many reasons why I love her.

After nearly a month, the dust has settled and I am allowing myself to be more excited about the future. I cannot tell you the joy I took in walking into work and telling everyone (with 100% honesty) that I was cancer free. It felt good and I felt like I could finally allow myself to rebuild that part of my life without worry for the tomorrows. When I told my daughter that mommy was better and that she wouldnt be going to the hospital too often from now on, I felt genuinely relieved. I had bought myself more time - time where I didn´t need to worry about whether I would be here for her. And spending time in Canada with my family was just priceless. The best trip I had perhaps ever had back.  It had been years since we had all been together (well before the cancer crap hit) and it was so fitting that the first time we were all reunited, we were also able to celebrate my remission. Many glasses were raised - despite my taking about 2 hours to finish a single glass! Oh how times have changed. :) I could see the relief in my family´s eyes especially my mom´s who I think was so terrified by how ill I was the last time she saw me. Of course she never showed her fear to me but I knew it was there. I am her baby and she is my mother - no mother should see her baby suffer. And my Cancierge - he is happy with the news but also adjusting to a new normal. I think we often forget how affected others are by the cancer experience and he has been my loyal partner in crime through it all though rarely showing his stripes. He never had to tell me because I knew how scared he was of losing me. Thankfully I hope we have many many years left together to make up for the last few years of hell.

I know this is one hurdle overcome in a long, long race and that we are still very far from the finish line. However it is a noted victory that I will never ever forget. Cancer is far too greedy and takes far too many good people so any opportunity to get one over on it, is a victory in my eyes. I just wish so many others had been given the same chance as I am to live again. Cancer is ruthless and wicked. But I wont forget how the odds were stacked against us, the numbers  were not good and no one knew how this would play out - yet we still won. I think this just might have restored my faith in things actually working out. It ain´t all bad.



Thursday, January 16, 2014

Read This

On my way to bed last night I stopped by my daughters´room and kneeled down by her bedside. I listened to her breath in and out - little whistling sounds and studied the look of utter peace across her face. Like many mothers, I could sit and watch my child sleep for hours. I whispered in her ear "Mama loves you soooo much. You will always be my baby no matter what." I nearly choked on the last words as a tear trickled down my cheek when I thought about the possibility of not having the chance to be her mother as she grew up. It just made me feel physically ill - thinking about losing out on that experience of molding the child I had created. Because you see - last night when I went to bed I didn´t know what was going to happen today. All I knew was that my doctor had asked me to come in to get the results from Tuesday´s scan. So many scenarios swirled around in my head and most of them were of course horrifically awful. So when I dropped her off at daycare this morning,  I wondered about whether this would be a major moment - the last moment where things would still be normal and that maybe, just maybe when I returned to pick her up again things would be so unbelievably different.


It seems that life has finally given us hope and a lifeline. After three years of disapointments and crushing defeats, we have finally claimed a victory against the Big C. When I saw my doctor wave us in, he smiled - in that comforting "everything is going to be okay" kind of way. Because to be honest I had been close to hyperventilating in the waiting room. We sat down and he said that things actually looked quite good. I think both my husband and I were in shock as after what we have been through, we pretty much had prepared ourselves for the worst. But it seems that the hell I went through last year paid off and there is...Drum roll people - NO EVIDENCE of DISEASE!!!!! Yes that is right folks - I am officially and medically speaking cancer free. It feels good to say it and know it is true. I have earned my second survivorship pin with a PET scan to prove it. I think we should go out and buy a lottery ticket because we definitely have beat the odds on this one and kicked the stats out of the water. I was the first breast cancer patient in Norway to receive this kind of treatment and I am happy to be a success story. It feels fantastic and though my doctor is far from the emotional vocal type, I think he is pretty pleased that he managed to rid my body of this dreaded disease. Of course this is cancer we are talking about so the road doesnt end here and we have many more of these scans to get through but getting through one is reason enough to feel relieved and ecstatic. We did it everybody! See - cancer doesnt always win. :)

There are other things to discuss but I will save those for another day because today is simply going to be the day I was told that I kicked cancer´s ass. So what do I take from this whole life altering experience? Well - as cheesy as it sounds, you really can´t ever give up or stop hoping for things to get better. In just 6 months, I went from wanting to stop chemo because I felt like it was killing me (ironic choice of words) to celebrating slaying the C-dragon to the ground and being able to look at my future with confidence instead of fear. And I finally get to go to Canada! Woohoo!

It is Thursday which I think is acceptably close enough to the weekend to warrant cracking open some champers or wine. So please raise your glass with me and let´s all say together - FUCK CANCER!

Thank you again to all of you who helped me through this latest saga. Friends and family really are the best things a person can have and I think life would be empty and meaningless without them.

Here are some visual reminders:

Love from a super happy cancer free OBB!!!

Sunday, January 12, 2014

I wish I had a Crystal Ball

“After you find out all the things that can go wrong, your life becomes less about living and more about waiting.” Chuck Palahniuk, Choke

It is the second Sunday in a row that I have spent feeling awful and in bed most of the time. I felt alot like I did during chemo - the ache through my entire body, every tiny little movement and action feeling like such hard work, having no energy at all (i.e: having to sit down in the shower) and just feeling like absolute crap. Both days - I have slept hours throughout the day and had the most awful dreams. Mind and body are clearly out of sync. The thing is that I am not ill nor am I recovering from some huge night out (god I wish) - I am simply reacting to doing too much the day and week before. Honestly I find it so unbelievably depressing how cruel and punishing my body can be to me. It´s like when the pot starts boiling and the bubbles get closer and closer to the edge, you run to catch it to turn the temp down but instead everything erupts down the sides and everywhere. That is an accurate image of the way my body reacts when I do too much. The week was insane - first week of working 3 days a week, 2 huge birthday parties to host and the whole scan looming in the background. I know I pushed myself and I had this cold that was teetering on the edge of becoming full blown flu. It was just too much for me but of course I didn´t listen to my limits or to my body and I just pushed and pushed and pushed. Then BAM! Sunday it all comes crashing down and my body forces me to actually take the rest it needs via bed hostage tactics. I never experienced anything like this after the first cancer round so I can see how much more all of this has affected me. Every day is a new learning lesson for me and my newfound limitations. But god does it make me so crazy angry - that my 34 year old body (yes I had a birthday this week) can´t make it through a busy day with no rest without completely collapsing the next day and refusing to work. It isn´t normal but then again what the hell is normal about this life I have been living for nearly three years now.

I can´t believe cancer has been my dark passenger for so long. You almost start forgetting what life can be like without it. This time, three years ago, I was in pain, I knew something wasn´t right but I didn´t know how wrong it was. And now I feel like I am staring down a road with two paths and not knowing which one I will take. I want things to be okay because I just don´t know if I could go through more of this. I don´t know if my body could take more and I never thought I could or would feel like that. But do you want to hear a confession? I am also scared of things being alright too. Thinking of the results coming back clear makes me feel weird and unsettled. Cancer has been such a huge (albeit totally shitty) part of my life for a long time. In some screwed up way, it becomes a part of you and your identity. I am the girl who got breast cancer twice before she turned 35. By losing the cancer piece, you need to move on from the whole experience as you tick off each clear scan and it can be unsettling moving away from the safety net you can get from cancer. I don´t know if I am making total sense here (cancer - a safet net? Say what girl?) but maybe those of you who have had cancer before will get it. I of course never ever wanted to have cancer, but once you have it, the thought of having to just get on with everything again can be quite terrifying. Who am I if I am not the girl with cancer? Like this blog - would my normal life really be interesting enough for you all to read? So I feel all messed up about it all. I remember in October 2012, when my husband and I were waiting for the results of my biopsy following a positive pet result. We were so prepared for the cancer to be back and had made plans and strategies - so when we got news that the biopsy was negative (the biopsy was in fact wrong as they had missed the tumour by mm but hey thats just details), we felt deflated, depressed and so utterly lost. I guess that is kinda how I feel right now - lost. There is so much riding on this scan and now that it is nearly a day away, I still feel so unprepared. My doctor is being so positive though, which he never used to be, so I am trying to join him on that train of thought. When I am trying to fall asleep or wake up in the middle of the night, all I think about is that day we come in for the results. Any cancer patient or survivor can tell you how terrible that feeling is - the nausea, your heart beating a mile a minute, the analysis of everything around you.  I think of how I will feel that day and what his face will look like when he walks. Will he smile in that happy everything is okay way or in the "you are going to die" pathetic way? How will he say hello? Will there be smalltalk? Dr Sunshine tells me that I am always trying to find answers to questions and things that are impossible to know. Like I expect some crystal ball to be sitting in the oncology ward holding all the answers to everything. But like Tuesday when I lie there as the machine scans every inch of my body and like that day I go to hear my judgement, I will have no idea what is or will happen until it actually does. Acknowledging this lack of control clearly doesnt make it any easier but who said any of this was easy.

I had a dream last night that I was being chased by something I couldn´t quite make out. My chest was pounding, my legs were tired and fear rippled through my body. I just kept running because even though I couldn´t see it, I knew it was bad. I kept trying to will myself to wake up to end the dream because I was so scared. You ever have those kind of dreams? But I couldn´t stop the dream and it kept going and going. Kinda sounds like the last year of my life. However the important part was that as awful as the dream was, I did wake up and it did end. And I was okay. So regardless of what happens on Tuesday, I will tell myself what my husband wrote in my birthday card this year:

"Everything will be okay in the end. If it´s not okay, it´s not the end."


A slightly older and wiser OBB

PS: Thank you for all the emails, calls, packages, cards and messages from all of you from around the world. Birthdays are ever so special to me and so many of you joined in to celebrate it with me. I am grateful for all the love I have in my life. This year will be my best yet!

Thursday, January 2, 2014

2014 Will Be Cancer Free

“For last year's words belong to last year's language
And next year's words await another voice.
And to make an end is to make a beginning."
T.S. Eliot

First of all - Happy New Year everyone. I hope you all had a nice and restful holiday and are greeting the new year with open arms and extra big smiles. I love Christmas excessively and always find that it all goes by far too quickly and suddenly we are taking out the boxes again to put all the glittery, sparkly beautiful things away. I always feel sad that first weekend after New Years when everything disappears and we have nothing but an extra long cold and dark month ahead of us. But of course I had my little monkey´s fourth birthday yesterday too which was simply wonderful. I put everything I had into the day to ensure it was extra special for her. I feel that with everything I have been through, every moment matters and I want to make days like this absolutely perfect and it was. I can´t believe I have a four year old already. I did alot of thinking back to that day when she became a tiny little person in my arms and I embraced motherhood so fully and completely. Little did I know what would be awaiting me so soon afterwards. To be honest - I find it so hard to see her grow up so fast. She is my baby and most likely will be my only baby and I want her to stay little forever. I think she is far more perceptive then I give her credit because when I remarked how big she was getting yesterday, she said to me that I would get sad when she was bigger. I smiled and reassurred that I did want her to grow up but that she would always be my baby to which she agreed. I am also celebrating my own birthday next week which I feel priviledged to be doing as turning 34 is an honour and not a drag. I probably would have freaked about approaching my mid to late 30s had I not been smacked by the cancer stick because as I know - nothing is owed to you and growing old is not a right. So I will be fully embracing my saggy knees and crows feet thank you very much.

In other news - I bit the bullet and overcame my fear of planning for the future and (through some gentle prodding from my husband) booked tickets to Canada at the end of the month. It was crazy and I was hyperventilating as the ticket confirmation page was loading. I had been humming and hawing over it for over a month and finding reasons to not book. Of course the trip sits smack dab in the middle of this scanning limbo and as a result stirs up lots of emotions. It also reminded me of the last two trips I had to cancel because of "unforeseen medical emergencies" and I most definitely didn´t want to do it again. But I have decided that I will go to Canada regardless of what happens unless a doctor tells me otherwise. I need this - it has been over two years since I was there so I am well overdue and i think being with my family will be therapeutic. So monkey and me will take to the friendly skies and hopefully survive the trip. I have been growing increasingly anxious being out in public with her these days when I feel so fatigued, dizzy and just plain out of it. I get so scared that I will collapse and she will be alone, scared and not know what to do. I never worried about this stuff until the whole wedding debacle in September. Losing control and consciousness in front of lots of people is absolutely terrifying and I can´t imagine how much worse that situation would have been had she been there too. I guess I have more anxiety issues to work through then I thought. Hello therapy!

And finally...we are in January and my scan is now less then 2 weeks away. I don´t how the time went by so fast. I remember asking my doctor for a 5 month break as a favour because I desperately needed a long break from cancer but we are again ready to embark on the cancer merry go round. To be totally honest (because that is what this blog is all about) - I have no gut feel about how this is going to go at all. Maybe it is my way of protecting myself this time or maybe it is the result of having been through so many of these, the waiting times, the expectations and the disapointment. I genuinely have no idea but of course I want the outcome to be good. I have been telling myself that I look much too good to be ill again as have many other people but then I played games with myself today by studying pictures of me and monkey as a baby, looking wonderfully healthy and serene despite the fact a deadly cancer was growing aggressively in my body. It is hard to deal with all of this sometimes and what a mind fuck it can be! But all will be known very soon and hopefully all that poison and radiation held up its end of the bargain and killed everything. It does feel like a judgement day of sorts due to fact that there is just so much riding on this. I don´t want to hear more bad news and I dont want anyone to dig around in my body anymore. There is nothing left to take and my life needs no more interruptions. So you can be assured that I will keep you all updated on the scan and what we hope will be big scale celebrations in Canada afterwards! And there will be champagne people...there will be champagne.

Wishing you all well in 2014 and hope you make this year your best yet. I am hoping this will be mine.