When A Light Goes Out

“It's so much darker when a light goes out than it would have been if it had never shone.”  John Steinbeck, The Winter of Our Discontent

It has been a long time again since I put words to the screen and I failed in my repeated efforts to write a post surgical update after the operation on Feb 10th. It wasn't an easy ordeal but I will save that for another day. Today is for someone else.

Yesterday, the snow fell especially hard and covered the roads, trees and houses with snow that looked just like powdered sugar. There was a real beauty about it as it crunched under my feet as I walked. It was also the day, I joined a number of other mourners to celebrate the life and the loss of a wonderful person that I had the pleasure of knowing. I am not going to pretend to say that we were the best friends because we weren't but we shared a special and unique bond of cancer and through that bond, we had an openness in the way we talked and communicated. I remember the first time we met in person and three hours flew by and we hadn't even gotten through half of what we wanted to say. It was easy and effortless because we understand each other and the struggles of this disease at a young age. And all the extra challenges that come with it. There was an unspoken understanding.

When I found out that she had lost her battle, I was in shock and it sent a jolt to my heart. The tears prickled my eyes. I immediately thought back to the fact that we had been trying to see each other over the last 4 weeks and I just didn't find a free moment after my surgery. Life got in the way as it does and now I ache at my inability to prioritise. Life waits for no one.  Last night, I read back our messages that spanned two years and thought how strange the world is that we live in. With social media, email, text messages...everyone becomes immortal. There is always a trace of their life for us to read, to see, to hear and to remember. Nothing disappears. Facebook pages become unofficial memorial pages where we write to the person as if there were still here.

I spent a lot of yesterday thinking about her. Thinking about her and her family - their pain and infinite loss that was so fresh and sharp. About the unfairness of this disease and the random way it picks its victims. When you are told you have cancer, you join this special club where you learn to live with uncertainty and an utter lack of control over your situation. At the end of the day, it comes down to sheer luck in terms of what those pesky cells decide to do. No doctor, no amount of chemo or radiation will ensure anything. And that randomness makes no sense at all and it messes with our inate human instinct to want to explain away everything. But there is no explanation for why a young mother is forced to leave her family behind? It makes no bloody sense at all! And why they had to also struggle through extraordinary amounts of pain and suffering despite being a loving and gentle soul.

When I think back to my own relapse which is now nearly 3 years ago, there was a group of women who also suffered the same fate at the same time. But today they are all also gone. Leaving behind children, husbands, mothers, fathers, questions unanswered and lives unfinished. Why? It makes me mad thinking about why someone survives and another doesn't and it is also utterly terrifying. On the other hand, it is so messed up to think that I was and am so damn lucky to be alive yet at the same so terribly unlucky for having lived through two terrible breast cancer diagnoses. It really messes with your state of mind and even brings up feelings of survivor guilt. I feel a real duty to these fallen comrades to be out their living life to the max and grabbing life by the balls. But when i look at my life, I don't feel so great. I live with chronic pain that keeps me up at night, I survive on narcotics that I have to someday ween myself off, my body is a battlefield of scars and I live in constant fear that it will all come back. It is hard to push through these challenges and go out and dance in the rain and live life as if everyday were the last. Yet I feel terrible complaining about anything because it all could have been so much worse.  How do I find the balance? How do I honour these women and the robbery of a long life they lost and still be gentle with myself?

So today, I am thinking of that new angel who got her wings and joined an elite group of pink heroes who should remind all of us that life is precious. Forget pride, forget anger, forget who's right and wrong, forget what you think you know and forget living like you have a million tomorrows. I get so angry when I see people act unkindly to one another, or stress about something that really isn't that big a deal. Is it really that important? Is it worth losing time over? I can bet you anything that that lovely woman who left this earth this week, would have given anything for another tomorrow, Let's not waste ours.

Rest in peace my friend.

OBB

Why It Hurts

“There are memories that time does not erase... Forever does not make loss forgettable, only bearable.” 
― Cassandra Clare, City of Heavenly Fire

As I have done a lot lately, I have tried to write this blog entry many many times before. But once I wrote the last word, something held me back from putting it on here for everyone to see. I can’t put my finger on it exactly - what it is that is wrong with them. Maybe I was too honest, or maybe I was too dark or maybe it was a band-aid job to cover what I really wish I had the guts to say. Whatever it was, those graveyard entries were not meant to be so I am hoping that when I get to the end of this one, I will press “publish” and finally get some words out there into the web universe. I will start with the good news. I did in fact ace my last PET scan which my Facebook world would have found out about many weeks earlier. This is becoming a regular thing and it is truly fantastic to continue on in this state of remission. The whole scanning process is a mental rollercoaster - you go up, you go down and basically all around the entire spectrum of emotions. I am always so shocked how weird I feel afterwards. I feel like I should be screaming from the rafters, cracking open a crazy pricey bottle of bubbles and celebrating this special thing called Life! But I often feel lost, angry and confused by my own reactions. You prepare yourself for every possible alternative and I guess that mental exercise really messes with you. I always recall those precious moments before I head to the hospital to get the results and I always think - “Are these the last real normal moments I have before I take a sudden turn down an incredibly dark road with no way out?” It is always when I am giving my daughter her last hug and kiss and hoping this isn’t our last untainted memory before it all falls apart again. Having to even entertain those kind of thoughts must really mess with your head and might explain the weird place I am often in after this process concludes. So we are still cancer free. What’s next? Ever since a cold and dark day in November, 4 years ago in a fluorescent lit doctors consultation room, I was told I was special, that I was a mutant and that parts of my body wanted to actually kill me. It wasn’t a total shock, I had been expecting it in a way and it also gave a logical reason why a 31 year old new mother would suddenly be fighting cancer with no warning. In a freaky messed up way, it made sense out of the madness swirling around me. It answered the crazy question why my mother and I ended up fighting breast cancer at the exact same time. I had the BRCA 1 gene or as I apallingly read lately in an article - the Angelina Jolie gene. Sorry Angelina but it ain’t yours and there really is nothing sexy or glamourous about this gene. Ever since that day, my journey got a little longer and a lot more complicated. First, we removed my one lone healthy boob to give me some asexual symmetry. It was a good thing I decided that at the time because had I reconstructed the one, I would have been external uni boob, as after all the extra radiation treatments, scarring and surgeries, there is no chance that I will ever be given a new pair for Christmas. This the boob-free body I will live and die with folks. So with two bombs gone, there was only one more to deal with. It has been the harder of the two because of what it signified and of what it would be taking away. BRCA 1 gave me an almost 85% chance of getting breast cancer but it also gave me a 75% chance of getting ovarian cancer. So what does a girl do next? She removes what she has to in order to stay alive because what other choice is there. Now I have been public with my struggles to want a second child and I dreamed that maybe it would become real one day if I survived my relapse. My logical side told me it was impossible and taking risks weren’t worth it after everything but the fantasy side of me kept on dreaming and wishing that maybe it could happen. This dreaming wasn’t helped by my daughter’s strong desire for a sister and her constant questions as to why I couldn’t give her one - just one. It was so hard to hold in the tears whenever she asked me that - knowing the answer that she would just never understand..not now. But after chasing after my little miracle and searching high and low for some doctor to tell me there was a way, I have come to the point of acceptance that this isn’t going to happen. The decision has been made and the grieving must now begin. On Wednesday morning this coming week, I will walk into the hospital and resign myself to the fate that I have been given. No more fighting, no more dreaming. The time for those things has come to an end. Now there is nothing but the eery silence that comes with the reluctant acceptance of a situation you no longer have the strength to fight. It is really quiet now. Only I can hear the tiny aches of my broken heart or the little sobs that I hold deep in my throat so that no one can hear my pain. Like when you squint your eyes up so tight and hard to hold in those tears that so desperately want to flow. Because you know if you let just one tear escape, there is waterfall of pain following closely behind it and you just don’t have the strength to keep it all in and you don’t want anyone to know how much it hurts. That is how I feel right now and that it how I will feel when I put my brave face on. That mask has come out so many times over the last few years that its edges have become worn and bent kind of like my heart feels today. So I will need the strength of a thousand armies and the bravery that only a mother would know. To tell myself why I am doing this - it’s for them I whisper quietly under my breath. It’s to keep me here for them. That’s the most important thing in the world right now. And when the scars have healed on the outside, I will start the healing on the inside and hope that it will all be okay. It will all be worth it because I am here and the pain will be weakened by their love. I just wish it could be easier sometimes….some days feel so much bigger than you can handle and I already feel engulfed by what it waiting for me in just a few days. I just need to keep my eyes on the lifeline that I building through all these decisions that will keep me connected to my little family. I will be alright... I have to be.

OBB

Hello Stranger

I cannot tell you how many times that I have written out a blog entry, let it sit for awhile without publishing and then simply let it fall into the graveyard of unpublished entries without a trace. Maybe I felt like it wasn't good enough or that I didn't have enough of a crisis going on to make it interesting enough reading. I am not quite sure but all I know is that months and months have gone by without a word from me. Silence is a good sign in my case. I am not quiet because I have bad news that I am hiding from or because of a lack of capacity to actually write. I am simply not writing because my normal life is taking so much out of me that I have nothing left over to inspire me to write.

I am living a groundhog day existence really. I am pretty much back to where I was this time last year. Exhausted, worn out and in pain. I never learn when to pull back, I never learn when to say stop and I never want to admit I have limits. So I push and pull myself through a life that places demands on me physically and mentally that I can't really handle. My body started yelping out in protest a month or so ago when my heart starting acting very strange. Now I have experienced my fair share of heart issues after surviving the world's rarest IV port wire misshap two years ago that could have easily killed me. My heart has never quite been the same since then and I have been on heart meds ever since. But suddenly my heart stopped responding to the meds and I was having irregular beats almost constantly. I thought it would pass and I worked through it in silence. But it got worse and worse until I made time to see my GP who referred me to the cardiologist. They found out that I was having an extra systolic beat every 15 seconds. Now extra beats are very common but that frequency is less so and when each beat takes your breath away, you can imagine what a bummer that must be. I know these extra beats aren't going to kill me one night in my sleep which is incredibly important info for me to keep my sanity in check. Because my nightmares around sudden heart issues are all too close to home after having lost my beloved father one random afternoon in his office from an undetected heart defect. I know bad things can happen to me and others that I love so forgive me if I freak out just a little when my heart starts behaving wildly and I go to a dark place in my head.

The solution to this heart situation which they say is not totally unexpected for someone who has been through what I have (if i had a dollar for every time a doctor used that excuse...) is to increase the meds to the max dose. The downside of this is the side effects which suck. I didn't realise that one of the biggest initial side effects was depression which thankfully explained a weekend spent watching greys anatomy and 9/11 documentaries in tears and social isolation. In addition, it regulates and slows your heart rate and pulse down a lot so the best way to describe your physical state is like driving through life with the emergency break on or better yet putting your heart in a vice grip. Now the one thing I don't need in my life is another handicap. I find working 100% in another language, being a mom and wife quite enough to manage in my already reduced capacity so when I have to take something that takes away some of that all too precious capacity, I definitely feel it. It has been hard adjusting and I just feel unwell and frustrated. I can't remember the last time I woke up feeling okay. Instead I am always nauseous, my head throbs or my alarm clock is the pain in my body instead of my actual alarm. This isn't the quality of life I had intended for myself at the age of 35. My doctor wants me to consider surgery to fix this but I am pushing back on another operation as I feel I have had more then enough the last 5 years. Maybe it will get better on its own without having to go into my heart with a scalpel. I don't want anyone to think I am not strong enough to handle normal life again. I have worked so hard to appear like I can handle it all and I have done a good job. I won't lose all the progress I have made in the last months. Vulnerability is not an option.

So things haven't been so easy or smooth sailing though I haven't been bothered by any more cancer crap which is definitely good. PET scan time is soon upon us though and I will be taking a radioactive trip in a month's time. I am hopeful things will stay boring and uneventful on the malignant front. And my hysterectomy is weighing heavily on my mind...the clock is ticking for me and I can't hide from that for much longer. The ovarian reaper is coming for me and there is nothing I can do. Oh what a fun couple of months to come!

Lastly it is October which means it is breast cancer awareness month so I feel I must mention it being a two time breast cancer survivor lady. I often find the campaigns and promos they do to promote the disease miss the mark and actually alienate the women who are actually touched by the disease. The flashy calendars or ads with celebrities dressed provocatively, breasts pushed out into the camera or the cute products plastered with the shiny bright ribbons. How does it relate to the ugliness of breast cancer? I know buttons with photos of mastectomy scars don't sell but the way we paint the harshness and horrors of the disease over in happy go lucky pink can make it all a bit too fluffy for my liking and not at all accurate. The truth is this disease destroys and it takes so much away and there is nothing cute about that. Just a week ago, my daughter asked me why she couldn't be a big sister. She assured me that she would help and be the best sister possible so could I please have a baby. I caressed her rosy cheek and told her gently "I know sweetie, you would be a wonderful big sister but because mommy got sick, it isn't safe for me to have another baby. There isn't anything more i would love to do but to keep mommy safe, it has to be just us." Her response nearly broke my heart into two - "But mom than I will never know what a real family is like." Ugghhh...the lump in my throat at that moment. Maybe that would be a good message to send in this month of pinkness - breast cancer takes.

The above example is one of the bigger and more painful things that cancer has taken from me and also from my daughter and it the one thing that I don't think I can get over. That is what cancer does - it takes without asking, without apology and without warning. That is a reason to not ever ignore it and to be vigilant.  So maybe that's my advice to you - beat it to the punch and always be in front of it.  For me, I can and have gotten used to having no breasts (not even reconstructed ones which most have), I have gotten used to a life with daily pain and I have gotten used to pressing pause every 6 months to wait and hold my breath until I am sure we are safe for a little while longer. But losing the choice to decide about my family and losing out on the opportunity to let her share her life with someone else, well that is one tough pill for me to swallow and cancer took that away from me. Because it isn't just me who bears that cross, it affects her and the life she will live. So my pinktober message to all you ladies out there is to be aware, be present and never be afraid to check something out. By doing that, you remain in control and can decide what you do because no one wants to lose the power of choice. And cancer should never have the power to choose and influence over how we live our lives.

OBB
Sent from my iPad

Never too late to be NED

Sorry it took so long to post my happy news here. I posted it elsewhere and realised I hadnt shouted from the roof tops here in blogland. I made a video to announce and my husband made it even cooler. Enjoy! OBB xxx

A Beautiful Day for A PET

 No surprise here folks - another hiatus from blog writing again for me. Not a word written or even a half hearted blog attempt since my cancerversary - the creative juices have dried up into a veritable desert. I am still stuck in this mental funk where I am unable to concentrate and am almost always numbing myself with some form of technology. I had to bring out the big guns and dig deep into the Spotify musical chest for some inspiration today and it came in the form of Ms Sarah Mclachlan. Oh the memories that her songs bring up for me...really really good heart warming ones. I am one of those very lucky people who can think back so fondly to my teenage years. I loved that time and had so much fun. So many special people that were present during that time are either geographical separated from me, have fallen out of touch and some are actually gone forever. But the memories aren't and these songs immediately take me back to Lillith Fair in Montreal, road trips to various friends cottages in the Laurentians or the end of summer week at Camp Nominingue. Music has always been a powerful tool to remember for me.

Well this little soldier is gearing up for battle next week when I will face off with the PET scanning machine again. How did that time go by so fast? I remember when my doctor and I decided to wait a little longer between scans to give me a break and it had seemed such a long time away back then. But now I am quite literally one week away from doing it all over again and really starting to worry. Subconsciously I react to an upcoming scan weeks beforehand without always realizing it. It starts with googling which I try not to do ever. I quickly type into the search engine "Life expectancy for TNBC Stage 3b regional relapse." The specificity of this sentence and the tiny group it includes always makes it difficult for me to get any real info back. And isn't the whole point of my doing this is to get some kind of concrete answer, some kind of fact that will provide me some comfort and relief. I always want the answer before the question has even been asked and this situation is no different. I know what is coming - the anxiety, the fear and the wait. If there is any way I can alleviate some of it through some "googling" i do even though I know i wont find the answer I am looking for. But when did googling ever really help anyone unless you are looking for pictures of cupcakes or spiders to show your curious five year old! But you know what sometimes when I start digging into the journal abstracts and tables of survival stats, I feel lucky. Lucky that I beat some pretty incredible odds but I can't forget that I am a long way from being able to stop worrying. I often wish I had a crystal ball to tell me what was coming but then again would it really help if you can't do anything about any of it? #deepthoughtsforafriday

I have been thinking a lot about this lately in terms of the whole BRCA issue and of course Angelina coming front and center regarding her decision to remove her ovaries, helped jog my memory of my killer lady genes. I wrote about the day she made mastectomies hip nearly two years ago and she goes and does it again, only this time with ovaries and menopause. Only Angelina could do that. To me there is nothing more unsexy then having to do all this crap. But it has got me thinking more about my daughter and what fate lies ahead of her. At the same time, it has also made me think about what my life would have been like had known that was I carrying this deadly gene. There is no denying that it would have had a huge effect on me, my decisions, the way I looked at myself and my body. Would I still be the same person I am today if I had known? I can't answer that but part of me feels that it would have influenced me in some way especially the decisions I made. Worrying about getting cancer because you actually know you will most certainly get it and feeling pressure to find a partner and have kids before it is all too late is intense for anyone let alone a young adult. It doesn't sound too great to me. No one likes having the power to decide taken away from them.  So I worry for her and the struggles that lie ahead for her because of this. That day where I will have to open pandora's box and share my secret with her will come sooner then I like. And I don't think you will find "talking to your daughter about the brca gene" in many parenting books but it will be in mine. As a parent, you want your child to have the easiest and happiest way in life and knowing what is ahead (when most have no idea), places such a heavy burden and black cloud over things. She is only five now yet she can tell something is up and her inquisitive mind is asking questions about almost everything and anything these days. There will come a day soon when she will know what the word cancer means and that her mother had it...twice.  She is already consumed by death lately and asks me questions daily about it and how it all works. How do you die? What happened to you pappa? Do people who die still need to eat food? How do we know where they go? Does it hurt? Tell me how every member of your family died? And on and on. We are very careful not to associate sickness with death because she is sharp and would very quickly connect the dots. Even last week when we briefly spoke about the time I was sick, she asked bluntly "Were you going to die?" To which I replied of course not. She then told me that she had been very scared during that time and didn't want to discuss it anymore because it made her sad to think about it. I had to hug her extra long that night.  I have such a responsibility to control what information she gets and how she understands it in order to manage her fears. I don't want her growing up thinking that cancer equates death. What heavy things to have to think about now. I am in a way relieved my mother and I didn't have to tread through this tough road but of course I would have done anything to have had the chance to act before it all happened.

I think that there is no right way to do this and I have to trust that i will know what to do when the time comes just as I have through the rest of my challenges. And I will love her through it because that is the best thing I can do for her.

So for now I must focus on the right here, right now. Focus on what is coming up next week and believe it will all be okay for me. I made a promise to my little monkey that everything would be okay from now on.  I believe that there is nothing there and that I will earn a third gold star on my post cancer check up list. That I will move closer and closer to a life without fear.

Seems fitting to end this blog with a thoughtful quote:

"It takes just one song to bring back a 1,000 memories."

Thanks to all of you for staring in mine.

OBB

Four Years On...

Four Years On...

"It's so hard to forget pain, but it's even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace." Chuck Palahniuk

Again my blog has escaped me and I am months past the last entry. I really did like my last entry and I have realized time again that the more chaotic my life and mind are, the less likely I am to find the inner peace to form a single thought strong enough to translate into an entry. This was never a blog of my sub conscious babbling. I have tried so hard to make every entry matter and be something I could be proud of but for some reason those moments of clarity and inspiration are less and less.

Since I last wrote, I went to Canada with my daughter to see my family which was both therapeutic and lovely. There is something so effortless and comfortable about being with your clan - just like the soothing feeling of your favorite pair of sweats. And it fills my heart with such joy to see my daughter so in love with her cousins. She thrives so much around them and it brings out the extrovert in her. It makes it that much harder to deal with the distance and the fact that we only see each other once if not twice  a year if lucky. My side of the family is very small and we need to stick together.

I also started working a reduced workload which has as predicted been very hard to do. I struggle so much with just letting go and saying no. I want to deliver and I want people to feel they can rely on me. Being on sick leave doesn't exactly instill that vote of confidence that I am after. But I am really trying this time and not losing out on the opportunity that I have been given. Rest, relax and reboot are my aims of the day. I am also embarking on a happiness project because I have realized that I am not exactly where I want to be. The last four years have taken a clear toll on me and I know myself well enough to know when I am not being the person I want to be. I so desperately want to be that person who squeezes everything out of life and appreciates the good stuff. I continue to live in this perpetual state in which I numb the world out through white noise. I am here of course and I smile, laugh and say the right things but inside I feel so bloody tired of making light of it all. So I will see how it goes and if anyone is curious, I am reading "The Happiness Project" by Gretchen Rubin. It is definitely worth a read if you want to clear out your physical and mental clutter.

And to finish off - it has been a big week for me but I forgot to properly acknowledge it so I am doing it now. Firstly it was my 4 year cancerversary which is both a painful reminder of all the struggles and suffering I have endured but also a huge celebration that I am still here and cancer free. Not everyone is so lucky and considering the extra bonus round I had, I am especially grateful to be here. It is so weird when this day comes around - it makes me sit back and revisit all those events that took me to today. The roller coaster of emotions that range from shock, fear, bravery, anger and finally relief. My cancer story is a patchwork quilt made up of so many colors, textures and experiences that will stay with me forever. In addition, we also had the International Triple Negative Breast Cancer Awareness Day which is of course of importance to me and my family. TNBC is one nasty ass bitch that tends to target young women and be much more ruthless in its wrath. We currently have no targeted treatment for TNBC unlike the other more common kinds of the disease so research remains essential to getting to a point where there is a specialist kind of black ops treatment available that will kick TNBC into another stratosphere. But for now I will remain hopeful and optimistic that the kind of experimental treatment they used on my relapse (and that so far has worked!)  will become the norm and TNBC will no longer have the sinister reputation it does today. I thought it was fitting to roll back the clock and repost my first ever cancerversary entry on this blog. I think it so fittingly captures the raw emotion, denial and shock that comes with a cancer diagnosis especially one that came with absolutely no warning. It is strange re-reading my own words and how much more optimistic and less weathered by trauma I was back then. That girl who wrote those words could teach the me of today a thing or two.  So let's hop in the time machine...

Four years ago in a hospital exam room in Oslo,Norway:

Me: So I just wanted to come in to make sure everything was healing ok – you know me worry worry worry about everything.

Nurse: I see you are alone today. You usually always come with your husband but he isn’t with you today.

Me: No – I didn’t want to bother him with a routine appointment.

Nurse: Hmmm…

Doctor: Well everything looks to be healing fine but I think you should sit down. (She stares blankly at me, looks at her computer screen and takes a breath). I have some bad news.

Me: What do you mean?

Doctor: We have found malignant cells in your biopsy. You have breast cancer.

Me: What does that mean?

Doctor: You have cancer.

The shock took over and I was trembling with fear. I handed my phone to the nurse and told her to call my husband and tell him to come now. There was no way I could get the words out to him myself. There was no way I could tell him what had just happened. The next minutes that ticked by felt surreal and like I wasn't really there, as they told me what I would need to be ready for and that so many women survive breast cancer these days.

Me: I am sorry but I am not listening to a word you are saying. I am somewhere else.
Doctor: Ok. I am sure this all very upsetting for you.

Truth be told I was using every ounce of energy to hold the pieces of myself together and not fall apart…not yet. A million questions zoomed around my brain – none of them good. It was just so hard to believe it was happening to me. The moment my husband arrived in the room, I felt more secure. I wasn’t alone. He was so strong, my anchor and just sat down beside me, held my hand and asked the right questions. He didn’t flinch, he didn’t cry – he kept it together for me which gave me so much strength. That is the type of person you want beside you when your world crumbles – a sturdy stable refuge when everything else is spinning out of control around you.

When we walked out into the corridor, the tsunami that had been growing in strength and momentum finally crashed. I ran into the washroom and dialed my mother’s number. It didn't matter that it was the middle of the night, I needed her. She was the first person I told those three words to (amidst uncontrollable sobs of the deepest pain I have ever felt) – I have cancer.

Those three words changed my life. They changed how I looked, how I felt and how I see. Of course it was predominantly a nightmare but I have gained such deep insight into myself and life. An insight that would have taken a lifetime to learn. So it is not all bad.

So one year on, I am happy to be able to call myself a survivor. I am here, I am breathing, I am living. And in the words of my husband in those dark early days, “ We will beat this, no matter what.” And we did.

Love, OBB

When to say when

When I was a kid, every time I came down or in (swim practice) for breakfast, my father had everything laid out and neatly organised. Orange juice, various vitamins, oatmeal and a cup of tea. He took good care of us and it was so nice to be so well looked after each and every day. I can still imagine all those different coloured pills sitting in rows by my glass. Oh the comfort gained from routine. When I would take ownership of my bowl, he would come over with the milk and start pouring - “Say when Katie” he would say. I would wait and wager the best guess as to when the most optimal amount of milk was in the bowl. Sometimes I would call it too soon or other times, I would end up with a whole lot of oats swimming in a overflown bowl of milk. At that time, the consequences of not knowing the limits were minimal. But what about when you don’t know when to say when about serious stuff? What are the consequences then?

Just to interlude briefly here amongst all the big out there thoughts - I know I have been gone a long time from this blog. I am sorry for that. It has been a mixture of getting swallowed up by daily life, struggling with a lack of energy and creativity and just kind of drifting along my life without really being an active participant in it. When I am overwhelmed, I never have the mental clarity to write. There is never a free moment to come up with an idea. Instead I numb my brain and thoughts with constant distractions. I noticed it even before my husband brought it up a few weeks ago. He mentioned that I seemed to constantly be watching or reading something on a screen all the time - when washing dishes, brushing my teeth, cutting vegetables. Like I was afraid of what would happen if I was just left alone with my thoughts. It scared me to be honest - this new tendency to envelope myself in this white noise. A kind of suspended state of living.

Alot has happened since I last wrote. Unfortunately I can’t share everything on here but I can just say that I have taken a knock lately and it has hurt. It has made me angry and bitter. Like I am paying off this infinite debt to some gruesome monster lurking under the stairs that never seems to leave. It just keeps taking pieces of me, one by one, and giving me nothing back in return -no guarantees, nothing but uncertainty. It is incredibly difficult to not want to lash out at the people closest to you and feel as if no one in this huge expansive world gets it. There is really nothing worse than feeling alone when there are good people all around you. Like my doctor said recently - I really don’t know what to say. This is uncharted territory.” Yes you can say that again. I feel like I am in this purgatory state that doesn’t seem to have many members. I don’t fit on either side and it incredibly isolating.

So back to this whole milk metaphor. Knowing your limits is a skill that not many have. I know I don’t and this is precisely what has gotten me into this kind of hole. You have all read over the last 12 months about my struggles to adjust to normal life and how I have pushed myself way too hard in an effort to make up for all this lost time. I can tell myself so easily that no one can sprint a marathon yet I ridiculously set out to do just that. And now I have reached mile 28 and everything has come crashing down. For months and months, my palliative doctor has told me i need to find some time to rest and take a break. I think this conversation started somewhere last spring and I only managed to find some time at Christmas time. I kept telling her that I just had a few more important things to get done and that it was impossible to take a break now. When I reflect back on this, I am shocked that I went against medical advice.When did I become that person? But I thought i knew best and I was so damn terrified of what would happen if I admitted I couldn’t maintain this pace anymore.Being found out felt far worse than hitting a wall.  I think this is a great example of the unique set of challenges that a young person accompanies when facing serious illness. You are always racing to catch up but playing by a completely different set of rules and limitations. There is so much pressure to build a life, a career, a family during yours 30s and I have been benched!  I explained  this to one person recently like this - my mind, my dreams, my aspirations haven’t changed after these past four years. I am still the same person who wants to be successful and happy but my body sadly is not. This contradictory state presents such a challenge to me because my mind believes i can still do it all but my body continues to fail me. It makes me so incredibly frustrated and upset because I just want nothing more than to do what I want to do. But I can’t and I only recently realised and openly admitted it. Like an alcoholic who comes to the breaking point of admission - I had to admit to my employer that I have been hiding all my sufferings and struggles and that I am steps away from a collapse. Do you know how hard that was for me? And it wasn’t even me who opened up this dialogue. I was faced with it and had to admit defeat.That  I cannot do this but for some reason along this fucked up cancer road, I lost the way and stopped knowing when to say WHEN. And now everything seems out of my control and I must now take that dreaded step back. I will be reducing my workload for the next few months because I have to and because deep down, I know it is the right thing to do. I hate having to give in to my body’s limitations and that I can’t carry on this marathon but there is no other way now. After surviving through two rounds of cancer, I guess I should want more for myself. Instead of waking every morning feeling completely awful, putting on a happy face even though I hurt, pushing through a very intense working day, giving the last few drops of energy to my daughter and then leaving my husband with the worst bits. It isn’t a great life really. I haven’t had the energy to do the happy things that enrich my life - yoga, writing, laughing, being with people I love and just being real. I really don’t laugh enough anymore.  I should be trying to live my life to the absolute fullest but for some reason I went the other way. I tried to ignore my limitations. I tried to pretend everything was fine. I tried to push through the exhaustion barrier every day. And in the end, it was me who lost the most.

So as this new year rolls on, it is kind of like a new awakening for me too. I am accepting my situation right now and the body I am working with. I can’t do everything that I want to do but it doesnt mean that I wont make it to the finish line. It just might involev a few more water breaks and a slower steady pace. Being honest with yourself is never easy, so reluctantly I say - when.

The Phoenix (OBB)

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

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!!

OBB

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

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.

OBB

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

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.

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.

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.

OBB x

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.