Saturday, March 5, 2016

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.


Saturday, December 12, 2015

Why It Hurts

“There are memories that time does not erase... Forever does not make loss forgettable, only bearable.” 
― Cassandra ClareCity 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.


Sunday, October 11, 2015

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.

Sent from my iPad

Friday, May 22, 2015

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

Friday, April 10, 2015

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.


Sunday, March 8, 2015

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

Sunday, January 25, 2015

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)