“Never allow reality to get in the way of your dreams.” Mark W. Boyer
I just spent a lovely weekend with a dear friend at a spa by the sea. It was definitely something I rarely do (if ever have done) and was of course not my initiative or idea. My friend surprised me months ago with the weekend and thought some rest and relaxation was just what I needed. She could not have been more right especially after the past two weeks I have had. I have not felt good at all. The levels of exhaustion have been so consistently high that I have repeatedly fallen asleep sitting up on the couch after dinner this week. I have awoke most mornings with awful headaches, nausea and a burning in my tummy. Feeling crappy always makes me nervous. It is never just about feeling off...the cause can always been far more sinister. I actually remember thinking this week that if I just put my head down on my desk for a few moments, I would be okay. It has been hard and I am not one to give in very easily to tiredness but I may have met my match. I have genuinely been afraid that this week, I had crossed that irreversible threshhold where I could not recover from and that I had simply pushed too hard and my body would just say no. However I feel slightly renewed after 2 days of only worrying about myself and floating around in the water. I love the water and can still frolick around like a dolphin, doing headstands and synchro moves. Just the like a kid. I also laughed like i hadn´t in months. I laughed till I cried and it was so therapeutic for me. I don´t think I laugh enough. Not anymore. I need to do it more.
So with all this time and space away from regular life, it cleared my head and I was able to really think again. I was watching a documentary about a young girl who was a world ranked surfer and how she came to be who she was (for those who are interested it was called Zero to 100). In the culminating moment where everything came together, I felt emotional and had to hold back the tears. It really brought me back to my own childhood when I was myself a competitor and all those amazing memories returned. I loved that time - the training, the discipline, the competititon, the inspiration. The feeling of touching the wall first, looking up at the time board and pumping your fist in the air in sheer elation. God that feeling was addictive. I took so many positive things away from that time in my life and account some of the bravery and toughness i put into my cancer treatments from that period. I had been taught how to not be afraid and how to work through the pain - Two traits that i think can be very relevant and applicable in the world of cancer. But after the movie ended, I also felt sadness and questioned where my life was today. Watching that young girl beginning her journey to greatness with the world at her fingertips...she had so much to accomplish and so much time to do it. Where was I in terms of my path to greatness? I would never be back in the pool at that level nor would I have the chance to go to the Olympics. Furthermore my career is okay but I am far from making a global impact. Let´s just say that I won´t be finding a cure for cancer anytime soon. My body feels so old and weathered that i worry about what little left it has to give. How do I make my life count and matter? Or are the golden days done? It made me very sad thinking that maybe the best parts were indeed over and that the dreams I had had as a little person were only going to remain dreams. Is this a pre mid life crisis? Is this a realisation of the simple progression of life? It really made me think about how I live my life today and whether it is something I am proud and happy about? Of course I am not thinking of my family within these contemplations because they are by far my greatest achievement. But this has more to do with me. I asked my friend "Is this it? Are the best parts done for us?" She echoed my fears in that we both agreed that the time for dreaming was perhaps over now and reality had set in. As we get older, responsibility and practicality become paramount - there are bills to pay, savings plans to make - security trumps possibility and every day becomes the same. So tell me the truth - how many of you still dream big? I remember as a little girl, when I was trying to go to sleep at night I would start my own dream in my head about something I wanted to happen that made me happy. I don´t do that anymore and haven´t for a very long time.
I also started thinking about my daughter in that moment and how her entire life was in front of her. She had the power to do whatever she dreamed and try out what she wanted. In a way I envied her and the endless possibilities that lay ahead of her. Everything untouched and untapped. At the same time, I felt so excited for what she would be and whether like me, she would find something she was so passionate about that it made everything else feel irrelevant. The idea of her finding that special something and excelling in it and being able to watch it all unfold for her makes me so excited. And I don´t mean this in the way that I would be living through her so that I could achieve the things I wished that i had but rather being able to witness how fantastic and wonderful her life will be. I had my time and it was simply wonderful. Now it is her turn. Like most parents, I have big dreams for her and I believe in her abilities. She is my daughter so she must be wonderful and talented right? Just thinking about the future, her future makes me happy but also fearful. Suddenly it brings me back to my present reality which still remains so uncertain. How tragic would it be for me to miss out on that moment when she falls in love with something. I want to be there to share in the magic. So support her, love her and be there for those moments, cheering her on in any way I can. The idea of not being there just makes me feel sick. I know I need to think positive and imagine the future the way I want it to be and not give into the fear however it can be hard sometimes when you want to live so very badly. It is hard to avoid the things that threaten that vision from coming to fruition. Maybe I feel that time is going too quickly and that the next scan is coming up again too fast. The fear is returning and the monsters are creeping up out of their lairs. As my friend said today "It is really about being in between life and death and not knowing which way it will go." It is not so often that one is faced with such extremes in one moment where you are prepared for it. Often it comes as a surprise whereas here, I will walk in there and know that things will be one way or the other. It is so finite and so unbelievably terrifying. I tell myself everything will be okay and even feel silly allowing myself to imagine the worst let alone sharing it with all of you. I worry some of you think I am catastrophising and allowing myself to give into the fear. I mean no one has told me I have terminal cancer so why worry about it right now? Shouldnt i only be thinking positive so that things will indeed go that way? Unfortunately the reality of these intense experiences are anything but simple. It is like being on this boundary between one world and the other without knowing which side you will fall. The lack of control and power over it all is excruciating. It always comes back to the same things. I don´t want anyone to watch me wither away into nothing. I don´t want to die in horrific pain. I don´t want to look in the mirror and not recognise the reflection. I don´t want the people I love to have to say goodbye. To this day, I can´t not cry when I think of getting to a point where i would have to say goodbye to my monkey. The thought is just rips my heart right out of my chest. I don´t want to have to forfeit my future. I have worked so hard the last few months moving forward and farther away from this nightmare and it has worked. I am not consumed anymore. I allow myself to think about tomorrow and be able to continue on with a life that isn´t saturated by cancer. So the thought of going back to that awful place is just so horrific and nauseating. It is settled then...nothing will change. The only place I am going is forward to try and figure out some dreams for tomorrow. I am far too young to stop dreaming.
Sunday, May 25, 2014
Sunday, May 4, 2014
The Elixir of Life
I am starting to remember why I stopped writing for well over a decade. Life got in the way...it always does. When I was a teenager, I wrote pretty much every day and if you were a close friend of mine at that time, you would be familiar with my "poetry phase." I was very good at chanelling my teenage angst and broken hearts into 12 lines. It was always easy for me and I could whip a few poems out in less then an hour. But as things got busier and I got older, the inspiration and ideas stopped. There were a few revivals along the way but they were the product of deep grief and were fleeting. I remember trying to write something for my father´s funeral which had about 200+ people in attendance. I felt so much pressure to write something befitting the man he had been (simply amazing) and I wanted it to be perfect for him and for everyone that was there. I had a bad case of writers block and every draft I started I couldnt finish. It wasn´t until the morning of the funeral that I just picked up a pen and started writing. The words came so naturally and freely and of course it was absolutely perfect in every way. I made him proud that day...I know it. But these days I feel like I am blocked again - bogged down by the stresses of every day life. I don´t have very much down time these days and when I do I am so beyond exhausted that the last thing I can imagine is sitting down to write something worthwhile. It is kinda sad in a way because this blog has been so cathartic for me over the last three years and I don´t want to stop writing. Cancer was just a part of the story and I feel there is still so much to tell. Even today, I sat down in front of the screen and had no idea what I was going to write. I rarely write in a such a haphhazard way. I always used to get a blog idea when I was walking home from dropping my daughter off at daycare every day or when I heard an especially moving piece of music. But these days the ideas and the inspirations are nowhere to be found and I am questioning how I allowed things to get so chaotic again so quickly.
How rich and full is my life if I can´t even find time or space to really think and process what I am feeling? I don´t think finding an answer is easy. I actually have been thinking alot about my cancer experience, specifically my treatement, the last few weeks. This time of year always stirs up emotions surrounding my two journeys with cancer. Three years ago, I was recovering from a horrendously painful mastectomy and coming to terms with the approaching start date of chemo. It was alot to process and I remember how innocent I still was at that time...being terrified but having no idea what was in store for me. And then this time last year, my chemo had started this past week. Just thinking about these things has brought on immediate nausea. The hospital room that got so warm when the sun shone through the windows, the clear IV bag that looked like water but was a harbinger of something so toxic and horrid, even a bowl of oatmeal brings on stomach flips because it was something i ate at the time. Thinking of being back in the place brings on such dramatic physical and emotional reactions all of sudden. I never really had that many adversions from my time in treatment despite the warnings of not eating your favorite things or listening to your favorite music during chemo but suddenly it is all coming on very strong. When I listen to Ellie Goulding, it takes me back to those rides up the road to the hospital for treatment or a check up. When I look at the nutri shake drinks in the pharmacy while waiting in line, I am reminded of how I survived off them for weeks a time. So many memories of that time that take me back to a dark place. Maybe I am finally starting to process everything in a different way and instead of simply being in " survival" mode, I am starting to reflect on everything in an effort to move forward beyond it. Because I honestly feel so much less like the "cancer girl" as I move further and further away from that last end date of treatment. I am now working almost 100% in my job and getting good results. I rarely visit the Cancer Centre anymore and I almost never talk about cancer in normal conversation these days. Perhaps that is why I am finding it so much harder to write anything of substance in this cancer blog. I am definitely in a state of transition and experiencing something new. It is a tug of war at times - between my weather worn/exhausted cancer self who still can´t find the energy to do it all and the confident, self assured woman who wants it all. My expectations for myself are still a far way off and in trying to do everything, I often collapse. I still feel like i am making up for lost time and that I need to try and fit everything in that I missed out on. I do find that the one area that is suffering the most right now is my ability to socialise. I just have nothing left to do it these days and sincerely hope everyone understands how hard this balance is to maintain right now and that i will come back to you all soon. Please don´t forget that even though I look great and appear to be doing it all, I am a long way from 100% inside. My clothing hides the morphine patch on my arm that I wear to control the daily pain I feel and the smile hides the sheer exhaustion I am feeling every day. And this anger...I don´t quite know where it is coming from but I feel it alot. I also feel more out of place in many situations and just can´t be " the outgoing and happy" person I used to be. That is something I really notice these days...maybe I am just never going to be the same person I was before after living through these experiences.
So as most of you can see, my life is definitely on its way to normal with a few things left to work out. But just as the medicine I take daily and the scars I see everytime i get out of the shower remind me of the journey I have been on, I get these jolts that take me back to what has become such a normal part of my life that in a way has made me forget it was ever any other way. Just yesterday I was telling someone about our summer plans and then suddenly I realised that my next scan was not that far away. I have worked so hard the last few months to establish this life that was no longer interrupted by cancer and now it is just around the corner again. Having had a taste of "normal", I just don´t want to go back there again and of course I never forget about the what ifs. I taunt myself with the fear of things not going the right way and what if this dark passenger is back. It is just so damn terrifying to fathom after having worked so hard to forget. Because I have no idea and no control over what is happening beneath my skin and it is so hard not to imagine that that pain, that nausea or that loss of appetite is from a monster lurking in the dark corners. I don´t think i would even go to my doctor right now if I felt like something was up because I don´t want to interrupt this happy holiday away from illness. Do I sound crazy or reckless saying that? It is kinda of like wanting to stay at the party even though you know your parents wanted you home 2 hours ago. Instead of checking your phone for some threatening message, you ignore reality and just continue partying! I feel like that. I just want things to keep going the way they are where i can imagine the next promotion at work, where I can think about what kind of woman my daughter will become and where I can dream of a life where I can gracefully age into an old, wrinkly but happy woman with her equally wrinkly husband beside her. Because in all honesty I didn´t allow myself to think about these things this time last year - everything was shrouded in fear and just thinking about these things would make me cry. It is like I have tasted that elixir of life and I don´t want to go back. I know how important every minute and every opportunity is.
Just like the character Emily from Thornton Wilder´s play " Our Town" who says:
"Good-by, Good-by, world. Good-by, Grover´s Corners...Mama and Papa. Good-by to clock ticking...and Mama´s sunflowers. And food and coffee. And new-ironed dresses and hot baths...and sleeping and waking up. Oh, earth, you´re too wonderful for anybody to realise you. "
I realise how wonderful life is and I don´t want to lose my firm grip on it. Opening the curtains to see a beautifully clear sunny day; Coming in to kiss my sleeping daughter goodnight and whispering in her ear how much I love her; Thick fluffy pancakes with real syrup; My husband surprising me just because; Surprise parcels in the mail; Hearing from an old friend; Thinking of memories that warm your soul; Knowing you have tomorrow and the next day, and the next. These are just some of things that make me thankful to be here and have a chance at life again. So please Mr Cancer...stay away.
OBB x
How rich and full is my life if I can´t even find time or space to really think and process what I am feeling? I don´t think finding an answer is easy. I actually have been thinking alot about my cancer experience, specifically my treatement, the last few weeks. This time of year always stirs up emotions surrounding my two journeys with cancer. Three years ago, I was recovering from a horrendously painful mastectomy and coming to terms with the approaching start date of chemo. It was alot to process and I remember how innocent I still was at that time...being terrified but having no idea what was in store for me. And then this time last year, my chemo had started this past week. Just thinking about these things has brought on immediate nausea. The hospital room that got so warm when the sun shone through the windows, the clear IV bag that looked like water but was a harbinger of something so toxic and horrid, even a bowl of oatmeal brings on stomach flips because it was something i ate at the time. Thinking of being back in the place brings on such dramatic physical and emotional reactions all of sudden. I never really had that many adversions from my time in treatment despite the warnings of not eating your favorite things or listening to your favorite music during chemo but suddenly it is all coming on very strong. When I listen to Ellie Goulding, it takes me back to those rides up the road to the hospital for treatment or a check up. When I look at the nutri shake drinks in the pharmacy while waiting in line, I am reminded of how I survived off them for weeks a time. So many memories of that time that take me back to a dark place. Maybe I am finally starting to process everything in a different way and instead of simply being in " survival" mode, I am starting to reflect on everything in an effort to move forward beyond it. Because I honestly feel so much less like the "cancer girl" as I move further and further away from that last end date of treatment. I am now working almost 100% in my job and getting good results. I rarely visit the Cancer Centre anymore and I almost never talk about cancer in normal conversation these days. Perhaps that is why I am finding it so much harder to write anything of substance in this cancer blog. I am definitely in a state of transition and experiencing something new. It is a tug of war at times - between my weather worn/exhausted cancer self who still can´t find the energy to do it all and the confident, self assured woman who wants it all. My expectations for myself are still a far way off and in trying to do everything, I often collapse. I still feel like i am making up for lost time and that I need to try and fit everything in that I missed out on. I do find that the one area that is suffering the most right now is my ability to socialise. I just have nothing left to do it these days and sincerely hope everyone understands how hard this balance is to maintain right now and that i will come back to you all soon. Please don´t forget that even though I look great and appear to be doing it all, I am a long way from 100% inside. My clothing hides the morphine patch on my arm that I wear to control the daily pain I feel and the smile hides the sheer exhaustion I am feeling every day. And this anger...I don´t quite know where it is coming from but I feel it alot. I also feel more out of place in many situations and just can´t be " the outgoing and happy" person I used to be. That is something I really notice these days...maybe I am just never going to be the same person I was before after living through these experiences.
So as most of you can see, my life is definitely on its way to normal with a few things left to work out. But just as the medicine I take daily and the scars I see everytime i get out of the shower remind me of the journey I have been on, I get these jolts that take me back to what has become such a normal part of my life that in a way has made me forget it was ever any other way. Just yesterday I was telling someone about our summer plans and then suddenly I realised that my next scan was not that far away. I have worked so hard the last few months to establish this life that was no longer interrupted by cancer and now it is just around the corner again. Having had a taste of "normal", I just don´t want to go back there again and of course I never forget about the what ifs. I taunt myself with the fear of things not going the right way and what if this dark passenger is back. It is just so damn terrifying to fathom after having worked so hard to forget. Because I have no idea and no control over what is happening beneath my skin and it is so hard not to imagine that that pain, that nausea or that loss of appetite is from a monster lurking in the dark corners. I don´t think i would even go to my doctor right now if I felt like something was up because I don´t want to interrupt this happy holiday away from illness. Do I sound crazy or reckless saying that? It is kinda of like wanting to stay at the party even though you know your parents wanted you home 2 hours ago. Instead of checking your phone for some threatening message, you ignore reality and just continue partying! I feel like that. I just want things to keep going the way they are where i can imagine the next promotion at work, where I can think about what kind of woman my daughter will become and where I can dream of a life where I can gracefully age into an old, wrinkly but happy woman with her equally wrinkly husband beside her. Because in all honesty I didn´t allow myself to think about these things this time last year - everything was shrouded in fear and just thinking about these things would make me cry. It is like I have tasted that elixir of life and I don´t want to go back. I know how important every minute and every opportunity is.
Just like the character Emily from Thornton Wilder´s play " Our Town" who says:
"Good-by, Good-by, world. Good-by, Grover´s Corners...Mama and Papa. Good-by to clock ticking...and Mama´s sunflowers. And food and coffee. And new-ironed dresses and hot baths...and sleeping and waking up. Oh, earth, you´re too wonderful for anybody to realise you. "
I realise how wonderful life is and I don´t want to lose my firm grip on it. Opening the curtains to see a beautifully clear sunny day; Coming in to kiss my sleeping daughter goodnight and whispering in her ear how much I love her; Thick fluffy pancakes with real syrup; My husband surprising me just because; Surprise parcels in the mail; Hearing from an old friend; Thinking of memories that warm your soul; Knowing you have tomorrow and the next day, and the next. These are just some of things that make me thankful to be here and have a chance at life again. So please Mr Cancer...stay away.
OBB x
Saturday, March 22, 2014
Putting your Health First
Again it has been about a month since my last entry and it is clear to everyone that this blog is proving to be more and more difficult to stay on top of. This is what happened for over a decade when life got in the way of doing what I love and my creativity dried up when other parts of my life picked up into a frenzying pace. It was only when illness forced me to slow down, that my love of writing was able to come alive again. But I don't want this blog to end because life got in the way, my journey is far from over so I will write when I can and keep you abreast of the important stuff.
I have been thinking a lot about something that I have been told hundreds of times over the last three years. It is something that friends, family, coworkers, my medical team and even strangers have told me over and over. "You must put your health first" they all tell me. Such simple advice but oh so difficult to actually do. Because honestly how many of us actually do that on a regular basis? Some of us smoke, others binge drink, most dont get the required exercise or your 5 a day and I am certain we all sweat the small stuff much more then we ought to. The truth is that life gets in the way of putting ourselves first more often than not. I am the first to put my hand up and say that I am terrible at this. And please don't think that I am playing the victim or martyr card here because I am not but rather I am just being honest. Despite having been seriously ill for about three years, I still push myself to complete exhaustion because I want to be the best mom, the best employee, the best wife and the best friend. But you know what? I am failing in many of these areas right now.
After over two months away from Cancer Town, I rushed from my last meeting to the car to make it to my palliative dr appointment in town. It felt weird walking through those two doors again and I felt so so so far away from that person who used to walk these corridors pulling an IV bag behind her. I was different now - my hair had grown enough so that it was creeping down my neck, my cheeks were rosy and I was dressed like a businesswoman ready to bust some balls. No one could have guessed that this woman pushing the elevator button was actually a patient - maybe a pharma rep or something! It was empowering. But when I arrived in the waiting area, I collapsed on the sofa in utter exhaustion and the receptionist who immediately recognised me remarked how it had been a long time, that I looked very tired and that she had cold water for me to drink. And you know what? God I was. My levels of tiredness have become far more complex and layered since cancer - there is the normal crap feeling, being very tired, excessively tired, ohmigod my whole body is screaming out in pain tired and then tiredness that actually stops me in my tracks and forces me to submit to it. I never even experienced these extremes after my first cancer round but the second one has been much more dramatic. I know discussing the different levels of tiredness can be so bloody boring and I hate talking about it myself but it is unfortunately relevant in my life right now. But back to the doctor - she could see how worn out I was and that I was running on empty. I described how I was feeling - the feeling of being out of control and completely restless, the fear of what could still happen, my obsession with trying to do it all and the fact that it was just not working. She actually understood me and the person I am. She knew that I was just not one of those people who could easily prioritise mysef and my health. No matter what I had been through, I would still try and do everything like I had done before and if not try to do even more. I talked about my obsessive need to try and make up for lost time despite knowing full well that I couldn't fit 6 months into the last 5 years that I felt had been taken from me. And the feeling of guilt that despite having been through two near death experiences, I still didn't "get it." That is the problem I find - I am very good at articulating how I feel in very open and honest ways and using fancy terms to describe what I am going through like PTSD, anxiety disorders, catastrophic thinking, etc...and it gives people the false impression that I am completely in control of myself and my life. The truth is that I am not. I am killing myself at work and doing so much more then I should be because I am so desperate to feel like I am contributing and adding value and because work is actually a very big and important part of my life. But on top of that stress, I also worry about things like a bump in the night and have been known to go upstairs and check multiple times in a night. I get scared when my husband or daughter goes out alone because of the fear that something might happen. I make decisions based on fear every single day. I get angry when people dont stay in touch yet I simply dont have the energy or concentration to be in regular contact with family and friends and I feel so guilty about it. And I push through the barrier of exhaustion many many times a day. When you list out those things suddenly it doesnt look like someone who is in control of things at all.
That is the thing with cancer that is often overlooked. We are so well looked after during treatment and we exist in soft cocoon like structures that protect us from the harshness of the outside world. People excuse our shortcomings and no one expects anything from you. Your focus is to survive and that is all. Everyone around you just wants to help and make things easier in any way they can. And as the patient, you have so much more time to do things that make you happy - be with your friends and those you love, have lazy mornings, do yoga and meditate. Basically it allows you to take time for yourself and it may be the first time in your life that you have been able to do so. There are so many services available for you to use and you almost never feel alone. But what happens when that treatment is over? Who looks after you then? I really think that life post cancer can be a truly terrifying place and there is little thought or effort put into helping people transition back from it. You just dont turn back into the person you were before and in most cases you never will be the same again. In cases of extreme treatment, you can suffer from a lifetime of side effects ranging from the physical, emotional and psychological.Not to mention the fear that it may come back - something I understand all too well. For me - in both of my cancer cycles, I had to proactively seek out help as there was very little offered to me and I felt like i had to navigate this road I had never been down mostly on my own. Often times, I had to convince mental therapists that I needed help dealing with post traumatic stress and that my fears, hypervigilance and anxiety were hindering my day to day living. My transition back to work was also pretty much lead by myself as I navigated the choppy waters of being the woman who had breast cancer...again. No one knew what my capacity was and many were clearly uncomfortable being around me or blurted out utterly innappropriate things across the salad bar at lunch. It was awkward and difficult as I tried to figure out what my role was again and how I could once again feel like I was contributing towards something because no one wants to feel like "dead wood." It can be really hard to try and juggle all these things yourself especially as you continually worry about that next scan and what will come of it. Because despite a huge victory, I know, my doctors know, my husband knows that we are so far from out of the woods and we are still dealing with some less then ideal odds. I live every day with that uncertainty. I did tell my doctor yesterday about that fear. How I am working so incredibly hard to build a life up again for the second time yet am continually thinking of what will happen if something goes wrong with the next scan in the summer. It is exhausting having to keep building, to keep going. I kind of think of it like when you build a sandcastle too close to the waters edge and every time the tide creeps on up on you and washes your castle away. But unperturbed, you begin to build it again and hope that this time you will have judged a safe distance. I feel like I am on that beach sweating and swearing my way through a second attempt at building the best and brightest castle that will stand for a very very long time. As i have mentioned so many times before - you just have to hope and never give up in this cancer game no matter how tired and frustrated you get. My castle will rise again.
OBB
I have been thinking a lot about something that I have been told hundreds of times over the last three years. It is something that friends, family, coworkers, my medical team and even strangers have told me over and over. "You must put your health first" they all tell me. Such simple advice but oh so difficult to actually do. Because honestly how many of us actually do that on a regular basis? Some of us smoke, others binge drink, most dont get the required exercise or your 5 a day and I am certain we all sweat the small stuff much more then we ought to. The truth is that life gets in the way of putting ourselves first more often than not. I am the first to put my hand up and say that I am terrible at this. And please don't think that I am playing the victim or martyr card here because I am not but rather I am just being honest. Despite having been seriously ill for about three years, I still push myself to complete exhaustion because I want to be the best mom, the best employee, the best wife and the best friend. But you know what? I am failing in many of these areas right now.
After over two months away from Cancer Town, I rushed from my last meeting to the car to make it to my palliative dr appointment in town. It felt weird walking through those two doors again and I felt so so so far away from that person who used to walk these corridors pulling an IV bag behind her. I was different now - my hair had grown enough so that it was creeping down my neck, my cheeks were rosy and I was dressed like a businesswoman ready to bust some balls. No one could have guessed that this woman pushing the elevator button was actually a patient - maybe a pharma rep or something! It was empowering. But when I arrived in the waiting area, I collapsed on the sofa in utter exhaustion and the receptionist who immediately recognised me remarked how it had been a long time, that I looked very tired and that she had cold water for me to drink. And you know what? God I was. My levels of tiredness have become far more complex and layered since cancer - there is the normal crap feeling, being very tired, excessively tired, ohmigod my whole body is screaming out in pain tired and then tiredness that actually stops me in my tracks and forces me to submit to it. I never even experienced these extremes after my first cancer round but the second one has been much more dramatic. I know discussing the different levels of tiredness can be so bloody boring and I hate talking about it myself but it is unfortunately relevant in my life right now. But back to the doctor - she could see how worn out I was and that I was running on empty. I described how I was feeling - the feeling of being out of control and completely restless, the fear of what could still happen, my obsession with trying to do it all and the fact that it was just not working. She actually understood me and the person I am. She knew that I was just not one of those people who could easily prioritise mysef and my health. No matter what I had been through, I would still try and do everything like I had done before and if not try to do even more. I talked about my obsessive need to try and make up for lost time despite knowing full well that I couldn't fit 6 months into the last 5 years that I felt had been taken from me. And the feeling of guilt that despite having been through two near death experiences, I still didn't "get it." That is the problem I find - I am very good at articulating how I feel in very open and honest ways and using fancy terms to describe what I am going through like PTSD, anxiety disorders, catastrophic thinking, etc...and it gives people the false impression that I am completely in control of myself and my life. The truth is that I am not. I am killing myself at work and doing so much more then I should be because I am so desperate to feel like I am contributing and adding value and because work is actually a very big and important part of my life. But on top of that stress, I also worry about things like a bump in the night and have been known to go upstairs and check multiple times in a night. I get scared when my husband or daughter goes out alone because of the fear that something might happen. I make decisions based on fear every single day. I get angry when people dont stay in touch yet I simply dont have the energy or concentration to be in regular contact with family and friends and I feel so guilty about it. And I push through the barrier of exhaustion many many times a day. When you list out those things suddenly it doesnt look like someone who is in control of things at all.
That is the thing with cancer that is often overlooked. We are so well looked after during treatment and we exist in soft cocoon like structures that protect us from the harshness of the outside world. People excuse our shortcomings and no one expects anything from you. Your focus is to survive and that is all. Everyone around you just wants to help and make things easier in any way they can. And as the patient, you have so much more time to do things that make you happy - be with your friends and those you love, have lazy mornings, do yoga and meditate. Basically it allows you to take time for yourself and it may be the first time in your life that you have been able to do so. There are so many services available for you to use and you almost never feel alone. But what happens when that treatment is over? Who looks after you then? I really think that life post cancer can be a truly terrifying place and there is little thought or effort put into helping people transition back from it. You just dont turn back into the person you were before and in most cases you never will be the same again. In cases of extreme treatment, you can suffer from a lifetime of side effects ranging from the physical, emotional and psychological.Not to mention the fear that it may come back - something I understand all too well. For me - in both of my cancer cycles, I had to proactively seek out help as there was very little offered to me and I felt like i had to navigate this road I had never been down mostly on my own. Often times, I had to convince mental therapists that I needed help dealing with post traumatic stress and that my fears, hypervigilance and anxiety were hindering my day to day living. My transition back to work was also pretty much lead by myself as I navigated the choppy waters of being the woman who had breast cancer...again. No one knew what my capacity was and many were clearly uncomfortable being around me or blurted out utterly innappropriate things across the salad bar at lunch. It was awkward and difficult as I tried to figure out what my role was again and how I could once again feel like I was contributing towards something because no one wants to feel like "dead wood." It can be really hard to try and juggle all these things yourself especially as you continually worry about that next scan and what will come of it. Because despite a huge victory, I know, my doctors know, my husband knows that we are so far from out of the woods and we are still dealing with some less then ideal odds. I live every day with that uncertainty. I did tell my doctor yesterday about that fear. How I am working so incredibly hard to build a life up again for the second time yet am continually thinking of what will happen if something goes wrong with the next scan in the summer. It is exhausting having to keep building, to keep going. I kind of think of it like when you build a sandcastle too close to the waters edge and every time the tide creeps on up on you and washes your castle away. But unperturbed, you begin to build it again and hope that this time you will have judged a safe distance. I feel like I am on that beach sweating and swearing my way through a second attempt at building the best and brightest castle that will stand for a very very long time. As i have mentioned so many times before - you just have to hope and never give up in this cancer game no matter how tired and frustrated you get. My castle will rise again.
OBB
Sunday, February 23, 2014
Life After Cancer x2
So I finally feel like I am progressing forward and I am paddling further and further away from that island I call Cancer. Kinda like when you are driving away from some place and you keep looking back - watching it get smaller and smaller until it completely disappears from sight. Of course I can still see it and I know it will be there for a very long time...in the background of my life - but I am finally allowing myself to make plans for the future without fear and am able to talk about things I never let myself say out loud. It really is hard to believe that as I approach my 3rd Cancerversary next week, I am in a good place. It is impossible not to look back over the past three years and not think about all the things that have happened and how those experiences have dramatically altered who I am, how I look and how I live my life today. It´s mind blowing really when you allow yourself to process everything.
Many people make huge life changes after surviving a cancer diagnosis. They quit their job and open their dream B&B in Tuscany or they adopt a completely organic clean lifestyle in every way. Despite the fact that I still eat sugar obsessively (often before 7am!), haven´t thrown caution the wind and followed my dreams and still worry about everything big and little, I am definitely a different person from the woman who walked into that hospital room nearly three years ago. I have learned many lessons and things about myself, about those around me and about life in general. The list is long but if I could highlight the biggest things they would be these:
Time is really the most valuable commodity we have. It doesnt stop for anyone no matter how much money or power you have so use it wisely. And don´t put off doing the things you really want to do. No one ever said on their deathbed - Damn I wish I would have worked more!
Forgive those you love if they have hurt you because at this stage of life, people aren´t going to change that much more so we need to accept them for who they are and enjoy the time we have with them.
Don´t make the people you love feel guilty because everyone is doing the best they can. There is never malice in love so don´t expect the worst in people you know only want the best for you.
Always acknowledge others pain and offer empathy. There is nothing worse then feeling like others dont get how awful you feel - something especially key for those who are chronically ill. I often feel that not a day passes where I don´t have pain or feel poorly and I know it must be frustrating to hear about it all the time but it is also important to recognise how frustrating it is for me too. Not feeling acknowledged just makes one feel worse. I ain´talking about catering to every whimper but just try listen.
Even though you can be afraid of something, silence is far worse then simply letting someone know you are there for them despite not knowing what else to say. Words aren´t always important - but knowing that you aren´t alone is what matters most. I know cancer and serious illness can scare people to the point where they cant even talk about it and want to just run away but think about how you would want to be treated if you were in the same situation. Just validating that this person is going through something intense and difficult is enough - as is a simple "how are you." Ignoring the elephant in the room doesn´t make it disappear.
My bullshit meter is significantly lower then it used to be. I just can´t fake my way through things anymore. When I am angry, I am angry and I will most likely tell you about it and then want to move past it to a better place again.
Grieving loss isn´t just about losing a person.I am grieving the loss of my own innocence, the loss of my two breasts and what I define as feminity, the loss of just being a new mother, the loss of a future without fear of an early death and the loss of a life that I always dreamed I would have. Cancer constantly changes the goal posts and you must adjust your dreams and expectations accordingly. When I thought about the life that I would be living today 4 years ago - I never could have imagined that it would be what it is now. Of course there are wonderful parts of it but I am still grieving many things that I feel have been taken away from me through this experience. Like the fact that I will never have a normal body ever again or that I don´t really know what this cancer will decide to do.
Marriage is not easy. It isn´t easy for anyone (and people are lying if they say otherwise) and it is infinitely harder when you throw an extra set of obstacles into the mix - like moving to a new country, having a baby and then living through cancer together twice - all in less then 5 years. Talk about intense. Cancer has really enabled me to uncover the truths about how to keep a marriage alive. When roles shift from husband and wife to patient and care giver, it really upsets the balance and can be challenging to find your way back. The focus is on the sick person and that can be difficult for the one who must be the rock, the support, the one who has to keep everything ticking over and is rarely asked how they are doing. Many relationships get infected by this disease just as it infects the body and never make it back. You just can never put off the needs of each other regardless of what is going on in your lives. Each person needs to feel loved, listened to and acknowledged - regardless of how tired, frustrated and fed up you are.
Anger. Cancer has made me so much angrier. I get angry at people, situations and things and I am far more vocal about it. Some of it comes from my anger over what has happened to me and how unfair it all has been and I guess it has spiralled out into other aspects of my life. When I see others just not getting the big picture or lacking perspective on things, I want to shake them into reality again. This is not always welcomed as one might imagine but I can´t help doing it. We all complain about so many things and in the process, stop being able to see the really awesome things in our lives. It isn´t about who owes you what (am not talking about money here) or what you feel entitled to, because if you have that viewpoint in the first place, no one will want to do anything for you and you will just become more miserable. It isn´t about what you haven´t done for someone but rather the things that you have done. And it isn´t about the things you do wrong but again - what you have done right. We look for the negatives so often and are so overly critical of ourselves and those in our lives. It is just a sucky way of living and I just can´t be around that negativity as much anymore. Best thing to do is to focus on what is right in your life and you will probably be alot happier because of it.
Being a Mom. Cancer has made me into the most amazing mother that I could have ever imagined being. I put every ounce of energy that I have into being the best version of myself for her. It doesnt matter how awful I have felt or how terrified I have been, I made sure that I was just there for her. In every moment. Cancer took alot from me but it also gave me the gift of extra time with her and it created such an unbelievable relationship and bond between us. She accepts me for who I am and understands without me having to explain. I am her mother. I love her. I brought her into this world with breasts that nourished her and now I no longer have them and to her that is perfectly okay. For her the most important thing is that her mother is here for her every night to tuck her into bed, read her a story, kiss her and tell her I love her to the moon and back.
So my treasure chest of knowledge and insight that I have been able to take away from the single most horrific experience of my life is endless and worth its weight in gold. Maybe that is one of the biggest lessons I have learned...That there is always something good to be taken from every experience you live through or survive, be it good or bad. You just have to be able to see it.
Three years on, two diagnoses later and I am still here...a better version of myself.
Go hug the people you love.
OBB
Tuesday, February 11, 2014
The Long Road Back
This may be a new record - days short of a full month without an entry! I think after my last one which was so massive and epic, I needed time to let it all sink in and process. Hearing that news was such a shock and signalled the end of one chapter and the beginning of another. Both my husband and I took some time out to adjust to the news as we had both prepared for such a very different outcome. No one wants to hear bad things but when you think something is going one way, it can rattle you to hear something else. That is one of the many things I have learned from my waltz with cancer - it totally fucks with your head and makes you react the opposite of normal. You can feel slightly lost because suddenly you actually need to get on with your life. No more pauses or stops, I have to pick up the pieces of my life again and start rebuilding the foundation brick by brick.It can be scary too - cancer can also be comforting in a weird way because of the routine nature of it and the lack of expectations. When you have cancer, people expect very little of you and let´s face it - people are extra nice to you and put very few demands on you, and that can be quite nice. Now that everyone knew that I was cancer free did my cancer safety net disappear like all those cancer cells did? I know and all those cancer survivors know that my journey to recovery is still far from over and just because the cancer is gone, the person I was before may never return fully. The treatments I have been through, two rounds so close together, ravages your body and my doctors have said I may never be the same again. We don´t know but I know the limitations my body still has and I worry that others will quickly forget that the healthier and better I look. I hate myself alittle as I read that last sentence back because it sounds so weak and cowardly. Like I am already making excuses and still living through my cancer even though I dont have it anymore. A very dear old friend perhaps put my thoughts to words best when she wrote this to me last month before we even knew everything was okay:
"Know that when that scan comes back clear, only then will you allow yourself to move past the "girl with cancer" phase of your life behind and be who you are now. But you don´t have to entirely leave her behind as she´s made you who you are today...Nor do you have to leave behind all your friends, support team and other methods of support that have gotten you through this phase. As the next phase of life develops, other support systems will come into your life and the cancer ones will fall further and further back into the periphery. You don´t have to automatically be completely without them. Right now you can´t imagine life without them as they have been your life. But just look at how well you´ve adapted to and thrived in all other phases of your life. New phases brought new wonders into your life. The only reason you dont know who you will be when that scan come sback clear is because you haven´t allowed yourself to dream it yet. But know that you will know what to do and who you want to be. You will walk down that road and it will be more than interesting enough to keep us all reading. "
She really captured it all so perfectly and so eloquently. Just some of the many reasons why I love her.
After nearly a month, the dust has settled and I am allowing myself to be more excited about the future. I cannot tell you the joy I took in walking into work and telling everyone (with 100% honesty) that I was cancer free. It felt good and I felt like I could finally allow myself to rebuild that part of my life without worry for the tomorrows. When I told my daughter that mommy was better and that she wouldnt be going to the hospital too often from now on, I felt genuinely relieved. I had bought myself more time - time where I didn´t need to worry about whether I would be here for her. And spending time in Canada with my family was just priceless. The best trip I had perhaps ever had back. It had been years since we had all been together (well before the cancer crap hit) and it was so fitting that the first time we were all reunited, we were also able to celebrate my remission. Many glasses were raised - despite my taking about 2 hours to finish a single glass! Oh how times have changed. :) I could see the relief in my family´s eyes especially my mom´s who I think was so terrified by how ill I was the last time she saw me. Of course she never showed her fear to me but I knew it was there. I am her baby and she is my mother - no mother should see her baby suffer. And my Cancierge - he is happy with the news but also adjusting to a new normal. I think we often forget how affected others are by the cancer experience and he has been my loyal partner in crime through it all though rarely showing his stripes. He never had to tell me because I knew how scared he was of losing me. Thankfully I hope we have many many years left together to make up for the last few years of hell.
I know this is one hurdle overcome in a long, long race and that we are still very far from the finish line. However it is a noted victory that I will never ever forget. Cancer is far too greedy and takes far too many good people so any opportunity to get one over on it, is a victory in my eyes. I just wish so many others had been given the same chance as I am to live again. Cancer is ruthless and wicked. But I wont forget how the odds were stacked against us, the numbers were not good and no one knew how this would play out - yet we still won. I think this just might have restored my faith in things actually working out. It ain´t all bad.
Hugs,
OBB
Thursday, January 16, 2014
Read This
On my way to bed last night I stopped by my daughters´room and kneeled down by her bedside. I listened to her breath in and out - little whistling sounds and studied the look of utter peace across her face. Like many mothers, I could sit and watch my child sleep for hours. I whispered in her ear "Mama loves you soooo much. You will always be my baby no matter what." I nearly choked on the last words as a tear trickled down my cheek when I thought about the possibility of not having the chance to be her mother as she grew up. It just made me feel physically ill - thinking about losing out on that experience of molding the child I had created. Because you see - last night when I went to bed I didn´t know what was going to happen today. All I knew was that my doctor had asked me to come in to get the results from Tuesday´s scan. So many scenarios swirled around in my head and most of them were of course horrifically awful. So when I dropped her off at daycare this morning, I wondered about whether this would be a major moment - the last moment where things would still be normal and that maybe, just maybe when I returned to pick her up again things would be so unbelievably different.
But...
It seems that life has finally given us hope and a lifeline. After three years of disapointments and crushing defeats, we have finally claimed a victory against the Big C. When I saw my doctor wave us in, he smiled - in that comforting "everything is going to be okay" kind of way. Because to be honest I had been close to hyperventilating in the waiting room. We sat down and he said that things actually looked quite good. I think both my husband and I were in shock as after what we have been through, we pretty much had prepared ourselves for the worst. But it seems that the hell I went through last year paid off and there is...Drum roll people - NO EVIDENCE of DISEASE!!!!! Yes that is right folks - I am officially and medically speaking cancer free. It feels good to say it and know it is true. I have earned my second survivorship pin with a PET scan to prove it. I think we should go out and buy a lottery ticket because we definitely have beat the odds on this one and kicked the stats out of the water. I was the first breast cancer patient in Norway to receive this kind of treatment and I am happy to be a success story. It feels fantastic and though my doctor is far from the emotional vocal type, I think he is pretty pleased that he managed to rid my body of this dreaded disease. Of course this is cancer we are talking about so the road doesnt end here and we have many more of these scans to get through but getting through one is reason enough to feel relieved and ecstatic. We did it everybody! See - cancer doesnt always win. :)
There are other things to discuss but I will save those for another day because today is simply going to be the day I was told that I kicked cancer´s ass. So what do I take from this whole life altering experience? Well - as cheesy as it sounds, you really can´t ever give up or stop hoping for things to get better. In just 6 months, I went from wanting to stop chemo because I felt like it was killing me (ironic choice of words) to celebrating slaying the C-dragon to the ground and being able to look at my future with confidence instead of fear. And I finally get to go to Canada! Woohoo!
It is Thursday which I think is acceptably close enough to the weekend to warrant cracking open some champers or wine. So please raise your glass with me and let´s all say together - FUCK CANCER!
Thank you again to all of you who helped me through this latest saga. Friends and family really are the best things a person can have and I think life would be empty and meaningless without them.
Here are some visual reminders:
Love from a super happy cancer free OBB!!!
Sunday, January 12, 2014
I wish I had a Crystal Ball
“After you find out all the things that can go wrong, your life becomes less about living and more about waiting.” Chuck Palahniuk, Choke
It is the second Sunday in a row that I have spent feeling awful and in bed most of the time. I felt alot like I did during chemo - the ache through my entire body, every tiny little movement and action feeling like such hard work, having no energy at all (i.e: having to sit down in the shower) and just feeling like absolute crap. Both days - I have slept hours throughout the day and had the most awful dreams. Mind and body are clearly out of sync. The thing is that I am not ill nor am I recovering from some huge night out (god I wish) - I am simply reacting to doing too much the day and week before. Honestly I find it so unbelievably depressing how cruel and punishing my body can be to me. It´s like when the pot starts boiling and the bubbles get closer and closer to the edge, you run to catch it to turn the temp down but instead everything erupts down the sides and everywhere. That is an accurate image of the way my body reacts when I do too much. The week was insane - first week of working 3 days a week, 2 huge birthday parties to host and the whole scan looming in the background. I know I pushed myself and I had this cold that was teetering on the edge of becoming full blown flu. It was just too much for me but of course I didn´t listen to my limits or to my body and I just pushed and pushed and pushed. Then BAM! Sunday it all comes crashing down and my body forces me to actually take the rest it needs via bed hostage tactics. I never experienced anything like this after the first cancer round so I can see how much more all of this has affected me. Every day is a new learning lesson for me and my newfound limitations. But god does it make me so crazy angry - that my 34 year old body (yes I had a birthday this week) can´t make it through a busy day with no rest without completely collapsing the next day and refusing to work. It isn´t normal but then again what the hell is normal about this life I have been living for nearly three years now.
I can´t believe cancer has been my dark passenger for so long. You almost start forgetting what life can be like without it. This time, three years ago, I was in pain, I knew something wasn´t right but I didn´t know how wrong it was. And now I feel like I am staring down a road with two paths and not knowing which one I will take. I want things to be okay because I just don´t know if I could go through more of this. I don´t know if my body could take more and I never thought I could or would feel like that. But do you want to hear a confession? I am also scared of things being alright too. Thinking of the results coming back clear makes me feel weird and unsettled. Cancer has been such a huge (albeit totally shitty) part of my life for a long time. In some screwed up way, it becomes a part of you and your identity. I am the girl who got breast cancer twice before she turned 35. By losing the cancer piece, you need to move on from the whole experience as you tick off each clear scan and it can be unsettling moving away from the safety net you can get from cancer. I don´t know if I am making total sense here (cancer - a safet net? Say what girl?) but maybe those of you who have had cancer before will get it. I of course never ever wanted to have cancer, but once you have it, the thought of having to just get on with everything again can be quite terrifying. Who am I if I am not the girl with cancer? Like this blog - would my normal life really be interesting enough for you all to read? So I feel all messed up about it all. I remember in October 2012, when my husband and I were waiting for the results of my biopsy following a positive pet result. We were so prepared for the cancer to be back and had made plans and strategies - so when we got news that the biopsy was negative (the biopsy was in fact wrong as they had missed the tumour by mm but hey thats just details), we felt deflated, depressed and so utterly lost. I guess that is kinda how I feel right now - lost. There is so much riding on this scan and now that it is nearly a day away, I still feel so unprepared. My doctor is being so positive though, which he never used to be, so I am trying to join him on that train of thought. When I am trying to fall asleep or wake up in the middle of the night, all I think about is that day we come in for the results. Any cancer patient or survivor can tell you how terrible that feeling is - the nausea, your heart beating a mile a minute, the analysis of everything around you. I think of how I will feel that day and what his face will look like when he walks. Will he smile in that happy everything is okay way or in the "you are going to die" pathetic way? How will he say hello? Will there be smalltalk? Dr Sunshine tells me that I am always trying to find answers to questions and things that are impossible to know. Like I expect some crystal ball to be sitting in the oncology ward holding all the answers to everything. But like Tuesday when I lie there as the machine scans every inch of my body and like that day I go to hear my judgement, I will have no idea what is or will happen until it actually does. Acknowledging this lack of control clearly doesnt make it any easier but who said any of this was easy.
I had a dream last night that I was being chased by something I couldn´t quite make out. My chest was pounding, my legs were tired and fear rippled through my body. I just kept running because even though I couldn´t see it, I knew it was bad. I kept trying to will myself to wake up to end the dream because I was so scared. You ever have those kind of dreams? But I couldn´t stop the dream and it kept going and going. Kinda sounds like the last year of my life. However the important part was that as awful as the dream was, I did wake up and it did end. And I was okay. So regardless of what happens on Tuesday, I will tell myself what my husband wrote in my birthday card this year:
"Everything will be okay in the end. If it´s not okay, it´s not the end."
Love,
A slightly older and wiser OBB
PS: Thank you for all the emails, calls, packages, cards and messages from all of you from around the world. Birthdays are ever so special to me and so many of you joined in to celebrate it with me. I am grateful for all the love I have in my life. This year will be my best yet!
Subscribe to:
Posts (Atom)


