I will be brief because I am in a rush but I needed to tell you all the good news!
I have no tumours residing in my brain at present!!! Woohooo!!!!
I will be seeing my doctor to go through everything and only got this news from him via text but the preliminary word is that I am still cancer free. Oh sweet baby jesus relief!
Of course I am over the moon with this news but it brings up many other questions that require time and thought. But I wont worry myself over them now.
I am going to celebrate this win!
Happy weekend to everyone everywhere!
Love OBB
Friday, November 14, 2014
Monday, November 3, 2014
Brains, trains and automobiles
So the
month of October went by without me being able to rattle out an entry focused
on Pinktober. I am really slipping these days as it is the first time in 3
years that I missed out on making a statement about this important month. I did
write a short entry on my facebook page and published some never before seen
pictures of my head shaving experience.
I think the one of my daughter being hold by her newly shaved mother was
powerful. She was just a baby than and had no idea of the struggles her mother
was living through. She was just happy to be in her mother’s arms – wrapped up
in her love. Things are so different now – I can’t hide anything from her
anymore.
So the
month of October has been especially hard for me. I have not been feeling well
at all and it has made much of my daily life a challenge. Let’s just say things
are slipping through the cracks all the time. I have continued to work through
all of this and not really missed a day of work despite feeling like I was on
the verge of collapse because I didn’t feel I had a choice. At first I didn’t think
much of it and just thought all of the symptoms I felt were unrelated and most
likely the cause of my insane workload and schedule for a person in recovery.
People who have lived through two back to back cancer rounds aren’t usually working
full time in an incredibly stressful and demanding job. Or at least they aren’t
in Norway! But I feel like there is no choice. I feel so bloody trapped between
trying to recover and trying to make up for lost ground. And when you give a little
on one end, you feel you lose on the other and thus I am stuck in this endless
tug of war against my two halves.
After a few
weeks of constant nausea, upset stomach, lack of appetite and taste changes,
headaches, body pains and a general weird feeling in my head, I spoke with my
oncologist after he had heard through the grapevine about my symptoms. He is
always so direct and to the point. “I am going to order a head MRI for you and
I will make sure it is done very soon. “ Ahhh…. Are we back to the world of
investigations again? He said he hoped it was just my body reacting to an
overload but that we couldn’t rule out anything in the brain as the symptoms
also were scarily similar to brain mets. I honestly hadn’t thought about it
being more cancer until that moment and it scared the shit out of me. Brain
mets are so unbelievably bad for a breast cancer patient. It is an immediate
death sentence and a fast one at that. I actually had naively thought that my
scans in the summer had included my brain but unfortunately PET scans don’t. So
no one has checked that place out for the dark passenger and it terrifies me. I
keep telling myself that I am fine and that it cant be anything bad. But then
the scary thoughts creep in and the googling starts and….suddenly I am making my
way down the rabbit hole again. Life expectancy after tnbc brain mets…6 – 8 months.
Oh fuck! How the hell do you not freak out about something like this? I
actually think my fears are penetrating my subconscious because I had the most
traumatic dream on Saturday night where I actually killed someone. An intruder
in the house that I attacked with a baseball bat! I can honestly say that I
have never killed anyone in the real or dream world and it made me question
whether this was related to what was happening in my life.
So Wednesday
is the day I will take a trip to Cancer Town to get a lovely photo of my brain
taken and then wait until we know what is happening. As you imagine I need all your positive
thoughts and prayers coming my way so that I can write in my next update that I
am still 100% cancer free!!! So many
things swirl around in my head regarding the what ifs and some of them are
surprisingly rationale in a crazy kind of way.
You always prepare yourself for every possible outcome because that is
one thing cancer teaches you. Be as prepared as you can regardless of the news
you here. Never let cancer surprise you again. SO I am desperately hoping that
this is all a false alarm and just my doctor being very thorough. Perhaps after
this latest episode, it might finally force me to sit down and figure out what
to do with my life as this merry go round I am on can’t keep going around.
Thanks for
your happy thoughts!! Here’s to a happy met free brain!!
OBB
Sunday, September 28, 2014
Coming Back from the Wars
"It was hell to be so tired, and still care." Lois McMaster Bujold, Shards of Honour
I hate when I start a blog on a low note and go straight into all that is wrong with my world. I feel like the nature of all my correspondence recently has also been following the depressed debbie theme and I worry that i am bringing everyone around me down too. I just don't want to be that person who is always negative and when asked how I am doing always has crap things to say. I personally hate talking to people like that myself so I just cannot become that person but I fear that I am. But how do you get around some pretty big issues that are weighing you down tremendously? Do I pretend they aren't there? Is it my fault that I have been chronically ill for years now and am just being honest when I describe what is wrong? It is a conundrum in every sense of the word.
I have been feeling like between a rock and a hard place the last 2 weeks and struggling with some things. First off I got so sick last week and could not even make it up the stairs. I know there is something wrong when I can't even muster up enough energy to read to my daughter at bedtime. That is a sacred special time between the two of us that I rarely miss but I just couldn't do it. Every inch of my body was throbbing with pain and I felt just like I did when I did "sickplatin" last year. Being sick sucks but being sick when you have been sick for so long is even crappier. Your threshold is decidedly lower on what you can handle and I genuinely wanted to scream. Nearly two weeks on, I am not okay and there are no answers as to why. I have had blood tests, doctor visits and even a gastroscopy a few days ago which frankly sucks. I am sure some of you have had it before as we seem to live in a world where stomach ulcers and ailments are commonplace in our hyped up over stressed existence. Well having had most of the more heinous medical procedures on offer these days, this one was downright violent. I felt like a POW at Guantanamo Bay being water-boarded! They forgot to freeze my throat perhaps in the confusion of trying to find a good vein (which is never an easy job) so it hurt. You dry heave the entire time and it is just plain yuck. I signaled twice for them to stop during but of course once you all the way in, you don't come out until you are finished. Seeing as my stomach issues have become far worse in the last 2 weeks, we were wondering what we would find in there. Having been on max prescription anti acid meds for nearly a year now with no relief and regularly feel sick, I was certain something would be there. But there was nothing to see. No ulcers, no nothing...just a whole lot of stomach lining. So what the hell is wrong? Why do I feel nauseous all the time, why does my stomach burn like hell, why do I feel sick after every meal??? This can't just be normal and I am frankly frustrated. And I am so bloody tired. One of my doctors on the Palliative Ward who met me on Wednesday this week took one look at me and said that she had never seen me look so wiped out and exhausted as I did than. She isn't the only one to remark this as many others have said the same and the proof is in the pudding. I feel like I walking around with weights in my shoes and everything just seems to ache. What is wrong with me??
It has put considerable stress on me and my work as well and that is where I find things so hard to balance. I care so much about doing a good job and despite having been ill, I rarely if ever take an actual "sick day". If I have to be home with my daughter when she is sick, I will work from home and get the job done. Since I came back to work, I have been desperately, if not obsessively, been trying to show my worth there and not be seen as the sick girl who can't hack it. That is one of the real challenges of becoming so ill at a time in your life when you should be rising to the top of your career and everything else coming together. I thought that would have been me too but instead I am crawling up this mud hill and keep falling back a few paces over and over again. I feel trapped because I need to work to make a living and I need to do something that challenges me. But how do I do this and also put my health first? It seems impossible to me right now. It is clear to myself and everyone around me that I am not doing that at all and I am on a slippery slope, gambling on a dangerous game where I wonder if tomorrow will be the day my body just gives up. I know that I am not far from that point but I don't know what to do. I can't just give up and I don't want to. Giving something else to the cancer that ate into my life is not what I want to do. It has taken far too much already but at the same time how do I deal with this? Everyone tells me to put my health first but the reality is that my job isn't one where you can just not show up for a day, a week, a month...And I know I wont survive another absence. So I am stuck in this perineal hamster wheel going around and around day after day, getting angrier, more tired and more confused. What would I do if I didn't have to worry about my everyday commitments? I have some ideas about it but it is a scary question to ask and the fear of the unknown engulfs me. My job is such a big part of who i am and it is so difficult to start to see that maybe I need to be the bigger and more important part. To be honest I find this all scary as hell - contemplating the big questions and coming to terms with the fact that things are not the way they are and I am not the same as I was. Where do I get help navigating this rough road? Just being told to stop working isn't realistic for me. But pushing and pushing to the point where the gas tank is empty is ridiculous but that is exactly what I am doing.
This brings up something I think about often - how devastating cancer can be when it hits at a time like your 30s. I feel like your 30s are the time that the foundation is built from which everything else grows from. You establish your career, you buy a house, you can meet your partner for life, you start a family, and you start to think like an adult. I know that is what happened to me. So what happens when that grand master plan gets thrown out the window? What happens when you are so ill that you will never get back to the physical condition you were in before so that you can never work in the same way? What happens when you lean on savings to fill the gap due to loss of income because of unexpected illness and your buffer is suddenly gone? What happens when seemingly overnight your partner must become your caregiver and the nature of your relationship sharply shifts away from that of husband and wife? What happens when your young body becomes marred and permanently disfigured for the rest of your life? And what happens when you can't have the family you always dreamed for? That is what cancer can do when it hits at this supposed prime of your life. It is so destructive and ruthless in what it takes from you and is so far from being a gift in my mind. Things are never ever going to be the same for me and I am terrified. Maybe this is how it feels when you come back from war? You are so very different from the person who left to fight and now you must reintroduce yourself back into a life you no longer know how to cope with. Everything is different because you are different and have seen and experienced things no one will understand unless they were doing it right alongside of you.
What I can see now is that the last 10 months, I have been desperately trying to build back everything I lost even if it means putting myself and my wellbeing last. A friend asked me yesterday how I would feel if for some reason all of this intense stress and work resulted in me getting sick again. How would I feel about it? Would any of it have been worth it? The answer to that question is easy to answer but why is doing it so much tougher for me? I just find all of this so god damn hard to deal with right now and when you are exhausted everything seems to much worse.
I want to digress slightly here as I want to address some comments that came out of my last entry regarding fertility and babies. Many of you were so supportive and had many great ideas as to what else I could do. I did have my appointment with the oncology doctor this week and sadly they shot down every single one of my ideas. It was a blow and maybe it is time to seek additional opinions. Getting second opinions in Norway just isn't done. You take what the doctor says for gospel and never question it. But this is so final that perhaps i need another viewpoint.
I have a lot to think about right now. I just need to figure out what the next move will be.
And please don't take my lack of contact personally. I am struggling with everything these days and am just out of energy. I hope you will reach out all the same as I still value the support from my peeps and desperately need a pick me up.
A pretty wiped out OBB
I hate when I start a blog on a low note and go straight into all that is wrong with my world. I feel like the nature of all my correspondence recently has also been following the depressed debbie theme and I worry that i am bringing everyone around me down too. I just don't want to be that person who is always negative and when asked how I am doing always has crap things to say. I personally hate talking to people like that myself so I just cannot become that person but I fear that I am. But how do you get around some pretty big issues that are weighing you down tremendously? Do I pretend they aren't there? Is it my fault that I have been chronically ill for years now and am just being honest when I describe what is wrong? It is a conundrum in every sense of the word.
I have been feeling like between a rock and a hard place the last 2 weeks and struggling with some things. First off I got so sick last week and could not even make it up the stairs. I know there is something wrong when I can't even muster up enough energy to read to my daughter at bedtime. That is a sacred special time between the two of us that I rarely miss but I just couldn't do it. Every inch of my body was throbbing with pain and I felt just like I did when I did "sickplatin" last year. Being sick sucks but being sick when you have been sick for so long is even crappier. Your threshold is decidedly lower on what you can handle and I genuinely wanted to scream. Nearly two weeks on, I am not okay and there are no answers as to why. I have had blood tests, doctor visits and even a gastroscopy a few days ago which frankly sucks. I am sure some of you have had it before as we seem to live in a world where stomach ulcers and ailments are commonplace in our hyped up over stressed existence. Well having had most of the more heinous medical procedures on offer these days, this one was downright violent. I felt like a POW at Guantanamo Bay being water-boarded! They forgot to freeze my throat perhaps in the confusion of trying to find a good vein (which is never an easy job) so it hurt. You dry heave the entire time and it is just plain yuck. I signaled twice for them to stop during but of course once you all the way in, you don't come out until you are finished. Seeing as my stomach issues have become far worse in the last 2 weeks, we were wondering what we would find in there. Having been on max prescription anti acid meds for nearly a year now with no relief and regularly feel sick, I was certain something would be there. But there was nothing to see. No ulcers, no nothing...just a whole lot of stomach lining. So what the hell is wrong? Why do I feel nauseous all the time, why does my stomach burn like hell, why do I feel sick after every meal??? This can't just be normal and I am frankly frustrated. And I am so bloody tired. One of my doctors on the Palliative Ward who met me on Wednesday this week took one look at me and said that she had never seen me look so wiped out and exhausted as I did than. She isn't the only one to remark this as many others have said the same and the proof is in the pudding. I feel like I walking around with weights in my shoes and everything just seems to ache. What is wrong with me??
It has put considerable stress on me and my work as well and that is where I find things so hard to balance. I care so much about doing a good job and despite having been ill, I rarely if ever take an actual "sick day". If I have to be home with my daughter when she is sick, I will work from home and get the job done. Since I came back to work, I have been desperately, if not obsessively, been trying to show my worth there and not be seen as the sick girl who can't hack it. That is one of the real challenges of becoming so ill at a time in your life when you should be rising to the top of your career and everything else coming together. I thought that would have been me too but instead I am crawling up this mud hill and keep falling back a few paces over and over again. I feel trapped because I need to work to make a living and I need to do something that challenges me. But how do I do this and also put my health first? It seems impossible to me right now. It is clear to myself and everyone around me that I am not doing that at all and I am on a slippery slope, gambling on a dangerous game where I wonder if tomorrow will be the day my body just gives up. I know that I am not far from that point but I don't know what to do. I can't just give up and I don't want to. Giving something else to the cancer that ate into my life is not what I want to do. It has taken far too much already but at the same time how do I deal with this? Everyone tells me to put my health first but the reality is that my job isn't one where you can just not show up for a day, a week, a month...And I know I wont survive another absence. So I am stuck in this perineal hamster wheel going around and around day after day, getting angrier, more tired and more confused. What would I do if I didn't have to worry about my everyday commitments? I have some ideas about it but it is a scary question to ask and the fear of the unknown engulfs me. My job is such a big part of who i am and it is so difficult to start to see that maybe I need to be the bigger and more important part. To be honest I find this all scary as hell - contemplating the big questions and coming to terms with the fact that things are not the way they are and I am not the same as I was. Where do I get help navigating this rough road? Just being told to stop working isn't realistic for me. But pushing and pushing to the point where the gas tank is empty is ridiculous but that is exactly what I am doing.
This brings up something I think about often - how devastating cancer can be when it hits at a time like your 30s. I feel like your 30s are the time that the foundation is built from which everything else grows from. You establish your career, you buy a house, you can meet your partner for life, you start a family, and you start to think like an adult. I know that is what happened to me. So what happens when that grand master plan gets thrown out the window? What happens when you are so ill that you will never get back to the physical condition you were in before so that you can never work in the same way? What happens when you lean on savings to fill the gap due to loss of income because of unexpected illness and your buffer is suddenly gone? What happens when seemingly overnight your partner must become your caregiver and the nature of your relationship sharply shifts away from that of husband and wife? What happens when your young body becomes marred and permanently disfigured for the rest of your life? And what happens when you can't have the family you always dreamed for? That is what cancer can do when it hits at this supposed prime of your life. It is so destructive and ruthless in what it takes from you and is so far from being a gift in my mind. Things are never ever going to be the same for me and I am terrified. Maybe this is how it feels when you come back from war? You are so very different from the person who left to fight and now you must reintroduce yourself back into a life you no longer know how to cope with. Everything is different because you are different and have seen and experienced things no one will understand unless they were doing it right alongside of you.
What I can see now is that the last 10 months, I have been desperately trying to build back everything I lost even if it means putting myself and my wellbeing last. A friend asked me yesterday how I would feel if for some reason all of this intense stress and work resulted in me getting sick again. How would I feel about it? Would any of it have been worth it? The answer to that question is easy to answer but why is doing it so much tougher for me? I just find all of this so god damn hard to deal with right now and when you are exhausted everything seems to much worse.
I want to digress slightly here as I want to address some comments that came out of my last entry regarding fertility and babies. Many of you were so supportive and had many great ideas as to what else I could do. I did have my appointment with the oncology doctor this week and sadly they shot down every single one of my ideas. It was a blow and maybe it is time to seek additional opinions. Getting second opinions in Norway just isn't done. You take what the doctor says for gospel and never question it. But this is so final that perhaps i need another viewpoint.
I have a lot to think about right now. I just need to figure out what the next move will be.
And please don't take my lack of contact personally. I am struggling with everything these days and am just out of energy. I hope you will reach out all the same as I still value the support from my peeps and desperately need a pick me up.
A pretty wiped out OBB
Saturday, September 6, 2014
A Box of Dreams
"The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realise that the situation is over, you cannot move forward." Steve Maraboli
There is a box up in our attic that has stood on its own off in a corner surrounded by other discarded, unused items...waiting. From the outside looking in, most people wouldn't realize what the contents mean to Its owner unless that owner was me. I started putting things into this box shortly after the start of my first remission. I allowed myself to put some of my dreams away during a time of uncertainty and painfully discarded almost everything else in an effort to rip the band aid off and try to get on with it. Life as I knew it would never ever be the same again. But because of who I am and because of how I always believe in hope, I hung on and believed that maybe, just maybe I would take this box back out of its dark dust bunny existence again.
My meeting with my doctor a few weeks ago obviously reaped amazing results and it allowed us to cross another big tick off our cancer check list. Remission - check check. But something else happened that seemed to be dismissed into the background seeing as how huge the good news was. This was also the day that my dreams were crushed into hundreds of tiny jagged pieces...quietly silenced by the big C. I think my doctor had just been playing along with me and my delusions the last few years as he deep down knew that many of my what if conversations were not at all relevant if I didnt actually survive. Survival was paramount and everything else just "stuff." But this time was different, he gave me straight answers to the things I had wondered about since I first got sick. Before it was all vagueness and skirting around the big issues but now it was time to face the music. I guess I should look at this as a good sign because real answers maybe mean that he actually believes that I will beat this thing now so I could handle the truth. No more pretending to the cancer patient about the big unknowns.
I have always been very open in my blog about the situation with my faulty genes. If not open about pretty much everything. Not only did I get the lucky boob lottery but I also had ticking time bombs in the form of my ovaries joining in the battle. My body literally wants to attack me and the only thing I can do is cut parts of it out. Barbaric yes? Other options? None. If you are fortunate to find this kind of info out before hand, you are given a chance to plan ahead and make choices without cancer already invading your body. Definitely not easy decisions but everyone wants to be able to do something first because losing all the power and control. Like having all your children first and removing your bits last. Avoiding cancer completely. I wish I had had the chance to do all of these things instead of playing the catch up again. If only I had a time machine...
So the situation is as follows:
The clock is up suddenly as things have changed for me and I need to get my ovaries out after my next birthday. Happy fucking 35th birthday to me! A hysterectomy and instant menopause sounds frickin' fantastic to me! I think in some ways this is scarier because unlike removing your breasts, things actually happen to you that you feel that are really really shitty. How can I possibly be ready to be a woman in her mid 30s with no breasts, no ovaries and no sense of myself as a woman? It just isnt fair and it never feels like any of this ever ends. I keep giving things up and getting so little back in return. It is like there is a proverbial dark monster waiting around every corner after having already beaten the last one to a pulp. It is exhausting to have to constantly face the unknown and lose bits of yourself both physically and emotionally along the way. I am tired of being brave and cracking a joke to make it all seem okay. It just isn't okay.
The second part of the story goes back to my box that I mentioned farther up. That box contained the most special items that I have kept from my daughter's first breath until today. My dream box where I put all my hopes into that one day when I just might take these things out again for another baby. What could it have been? Another girl or a boy? I will never ever know and it makes my heart ache with heaviness and loss. I had been getting more used to the idea of it just being the three of us again but suddenly having the power of choice being taken away from me brings the hurt all back again. This is it for me and god does it hurt like hell. I find it unbelievably unfair that my husband and I aren't going to bring any other beautiful children into the world seeing as how much we adore kids - not to mention what amazing parents we are. But life rarely makes sense and is often unfair so feeling that way is pointless. When I think back to my younger years, I always imagined there being two. I thought it was the best combination and it gave me comfort knowing that one would never be on its own. Growing up in a family of three, I know how comforting it is to have your siblings to lean on and support you. Like when my father died tragically - we stuck together and pulled each other through it. Or (on a much more superficial note) when my sister lent me her bodysuit to wear to the school dance to impress said boy of the month. Who will pull her through the hard times or teach her how to replace the vodka in the liquor cabinet with water? You just dont want to imagine your child shouldering the burden of everything themselves but this is the reality we are living now. I will just have to work extra hard to give her the most loving life she will know and prepare her for life as much as I can.
I also need to stop allowing myself to feel so out of place and awkward when people talk about their lives that are full of extra children, new pregnancies and their own perfect blissful chaos. I feel instantly like an outsider who has nothing to share or say. I dont know what it feels like to look after siblings or how to get three kids out the door at breakfast time and I never will. I rarely felt out of place before all of this cancer business but now when others discuss the challenges of juggling all their kids and how hard it all is, I secretly want to scream out loud and say how lucky they all are. I will never know what that feels like and I hate the reasons for it. And for those of you reading this who are my friends and have lots of kids, I don't want you to feel guilty reading this and please dont shield me from your lives or filter what you say to me because you want to protect me or think it will make me mad. One thing I never have wanted was for others to modify their behaviour or feel they cant be honest about their own lives with me but just by reading this it might help you understand how I feel and how difficult this is for me. And promise me one thing - please don't tell me about how others struggle with fertility or how others never even get to have one so I need to be thankful for the one I have. One thing I am is thankful for every single gift I have been granted in this life and my daughter is by far the greatest gift. I cherish every single moment I get with her almost to the point of obsession. And I am also fully aware of the pain of others but my situation and circumstances are so very different, most importantly because they are my own experiences, my own sufferings. No one likes comparisons and they only seem to inadvertently minimize someone's pain and circumstance. We all carry around our own pain and heartache so I am just giving you a window into mine.
My husband always tells me that I baby our daughter too much, especially during the last few months. I carry her around when I can and take every cuddle I can get. He reminds me that she will be five soon and no longer a baby. But the truth is, she will always be my baby and I selfishly dont want her to grow up because this is the only chance I am going to get. I cling to the tender moments when I am still the center of her world - a princess in her fairytale world. But soon she will be too big for me to lift - a fact she reminds me will reduce me to tears when it happens. I struggle with this knowledge that all too soon this will all be over and these moments will be just memories like those clothes and toys sitting in that lonely box. That is why I hang on for dear life...squeezing every last drop out of everything.
The reality is that I should have never been born with the wonky mutation that taught my cells to produce Death Star tumours. I should have never gotten cancer once...or twice. I should never have had to remove both my breasts and have to now remove my ovaries. I should never have had to have a doctor tell me that I cant have any more children ever again because it could kill me. I should never have had any of this. But unfortunately there are no magic Harry Potter wands that can make it all better again so all we have is time, grief and the hope that things will be better again. So that box will stay up in that dark corner, suspended in time - its contents made up of what could have been. Memories now and forever wrapped in the most amazing blanket of love.
OBB
There is a box up in our attic that has stood on its own off in a corner surrounded by other discarded, unused items...waiting. From the outside looking in, most people wouldn't realize what the contents mean to Its owner unless that owner was me. I started putting things into this box shortly after the start of my first remission. I allowed myself to put some of my dreams away during a time of uncertainty and painfully discarded almost everything else in an effort to rip the band aid off and try to get on with it. Life as I knew it would never ever be the same again. But because of who I am and because of how I always believe in hope, I hung on and believed that maybe, just maybe I would take this box back out of its dark dust bunny existence again.
My meeting with my doctor a few weeks ago obviously reaped amazing results and it allowed us to cross another big tick off our cancer check list. Remission - check check. But something else happened that seemed to be dismissed into the background seeing as how huge the good news was. This was also the day that my dreams were crushed into hundreds of tiny jagged pieces...quietly silenced by the big C. I think my doctor had just been playing along with me and my delusions the last few years as he deep down knew that many of my what if conversations were not at all relevant if I didnt actually survive. Survival was paramount and everything else just "stuff." But this time was different, he gave me straight answers to the things I had wondered about since I first got sick. Before it was all vagueness and skirting around the big issues but now it was time to face the music. I guess I should look at this as a good sign because real answers maybe mean that he actually believes that I will beat this thing now so I could handle the truth. No more pretending to the cancer patient about the big unknowns.
I have always been very open in my blog about the situation with my faulty genes. If not open about pretty much everything. Not only did I get the lucky boob lottery but I also had ticking time bombs in the form of my ovaries joining in the battle. My body literally wants to attack me and the only thing I can do is cut parts of it out. Barbaric yes? Other options? None. If you are fortunate to find this kind of info out before hand, you are given a chance to plan ahead and make choices without cancer already invading your body. Definitely not easy decisions but everyone wants to be able to do something first because losing all the power and control. Like having all your children first and removing your bits last. Avoiding cancer completely. I wish I had had the chance to do all of these things instead of playing the catch up again. If only I had a time machine...
So the situation is as follows:
The clock is up suddenly as things have changed for me and I need to get my ovaries out after my next birthday. Happy fucking 35th birthday to me! A hysterectomy and instant menopause sounds frickin' fantastic to me! I think in some ways this is scarier because unlike removing your breasts, things actually happen to you that you feel that are really really shitty. How can I possibly be ready to be a woman in her mid 30s with no breasts, no ovaries and no sense of myself as a woman? It just isnt fair and it never feels like any of this ever ends. I keep giving things up and getting so little back in return. It is like there is a proverbial dark monster waiting around every corner after having already beaten the last one to a pulp. It is exhausting to have to constantly face the unknown and lose bits of yourself both physically and emotionally along the way. I am tired of being brave and cracking a joke to make it all seem okay. It just isn't okay.
The second part of the story goes back to my box that I mentioned farther up. That box contained the most special items that I have kept from my daughter's first breath until today. My dream box where I put all my hopes into that one day when I just might take these things out again for another baby. What could it have been? Another girl or a boy? I will never ever know and it makes my heart ache with heaviness and loss. I had been getting more used to the idea of it just being the three of us again but suddenly having the power of choice being taken away from me brings the hurt all back again. This is it for me and god does it hurt like hell. I find it unbelievably unfair that my husband and I aren't going to bring any other beautiful children into the world seeing as how much we adore kids - not to mention what amazing parents we are. But life rarely makes sense and is often unfair so feeling that way is pointless. When I think back to my younger years, I always imagined there being two. I thought it was the best combination and it gave me comfort knowing that one would never be on its own. Growing up in a family of three, I know how comforting it is to have your siblings to lean on and support you. Like when my father died tragically - we stuck together and pulled each other through it. Or (on a much more superficial note) when my sister lent me her bodysuit to wear to the school dance to impress said boy of the month. Who will pull her through the hard times or teach her how to replace the vodka in the liquor cabinet with water? You just dont want to imagine your child shouldering the burden of everything themselves but this is the reality we are living now. I will just have to work extra hard to give her the most loving life she will know and prepare her for life as much as I can.
I also need to stop allowing myself to feel so out of place and awkward when people talk about their lives that are full of extra children, new pregnancies and their own perfect blissful chaos. I feel instantly like an outsider who has nothing to share or say. I dont know what it feels like to look after siblings or how to get three kids out the door at breakfast time and I never will. I rarely felt out of place before all of this cancer business but now when others discuss the challenges of juggling all their kids and how hard it all is, I secretly want to scream out loud and say how lucky they all are. I will never know what that feels like and I hate the reasons for it. And for those of you reading this who are my friends and have lots of kids, I don't want you to feel guilty reading this and please dont shield me from your lives or filter what you say to me because you want to protect me or think it will make me mad. One thing I never have wanted was for others to modify their behaviour or feel they cant be honest about their own lives with me but just by reading this it might help you understand how I feel and how difficult this is for me. And promise me one thing - please don't tell me about how others struggle with fertility or how others never even get to have one so I need to be thankful for the one I have. One thing I am is thankful for every single gift I have been granted in this life and my daughter is by far the greatest gift. I cherish every single moment I get with her almost to the point of obsession. And I am also fully aware of the pain of others but my situation and circumstances are so very different, most importantly because they are my own experiences, my own sufferings. No one likes comparisons and they only seem to inadvertently minimize someone's pain and circumstance. We all carry around our own pain and heartache so I am just giving you a window into mine.
My husband always tells me that I baby our daughter too much, especially during the last few months. I carry her around when I can and take every cuddle I can get. He reminds me that she will be five soon and no longer a baby. But the truth is, she will always be my baby and I selfishly dont want her to grow up because this is the only chance I am going to get. I cling to the tender moments when I am still the center of her world - a princess in her fairytale world. But soon she will be too big for me to lift - a fact she reminds me will reduce me to tears when it happens. I struggle with this knowledge that all too soon this will all be over and these moments will be just memories like those clothes and toys sitting in that lonely box. That is why I hang on for dear life...squeezing every last drop out of everything.
The reality is that I should have never been born with the wonky mutation that taught my cells to produce Death Star tumours. I should have never gotten cancer once...or twice. I should never have had to remove both my breasts and have to now remove my ovaries. I should never have had to have a doctor tell me that I cant have any more children ever again because it could kill me. I should never have had any of this. But unfortunately there are no magic Harry Potter wands that can make it all better again so all we have is time, grief and the hope that things will be better again. So that box will stay up in that dark corner, suspended in time - its contents made up of what could have been. Memories now and forever wrapped in the most amazing blanket of love.
OBB
Sunday, August 24, 2014
Being NED
I am late to the party and I am sorry for that. I know silence after a scan can be interpreted as something bad and I don’t ever want any of you to worry. Most of you will already know by now my news but for those of you still waiting…
I am 100% NED!!!! No evidence of disease again. Talk about bitch slapping those malignant cells all the way into next week!
It is always a shock when you get good news and almost a sort of anti-climax. I had convinced myself the night before and the morning of my appointment that it would be bad. My husband and I had discussed our game plan the evening before the appointment to prepare ourselves for whatever might be. You never go into battle unprepared as we had previously learned. His worst fear was that something would have light up needing further investigation and mine was that I would be told I was dying. Who is the catastrophist here I wonder? I kissed my daughter goodbye that morning and wondered again whether this would be the last normal moment between us before my world came crashing down again. So many emotions, so many thoughts brought up to the surface.
But the battle plan was not needed and it appears that our enemy has been killed off. For the first in a while I am starting to wonder if maybe this cancer isn’t ever going to return? I know I can’t totally stop worrying about my silent enemy but I do know that 2 clear scans in one year is one hell of a reason to celebrate. My doctor was really pleased but always the cautious one. When I asked him what it meant to have two clear scans in a row in terms of my future he said that the results were “nice.” What a pokerface this guy has and he even told me that he won a pokerface competition! I started thinking later that evening about how this latest news will influence my long term relationship with cancer. It seems like we are growing further and further apart from one another despite what a huge and all-consuming role it has played in my life for over three years now. Will my life really get past a point where cancer is no longer a part of it? It was so hard to imagine a life like that a year ago…where cancer has no purpose or power over me. It is also scary at times as I worry about having to fend for myself and not use my cancer crutch anymore. Will people suddenly expect more from me and excuse my shortcomings less? I said to my doctor that day that one of the things I still struggle with is that because I look good everyone assumes I am 100% strong and healthy. I most definitely don’t feel that way but after having a year of cancer free living, maybe expec tations will return and I will have to be “normal” again? Maybe this is hard to understand because it isn’t about having cancer again but it is about the long road to recovery that becomes harder and harder for others to understand the further out from the disease you become. I am scared of failing, scared of disappointing people and scared of not hacking it. Cancer took some of the pressure off temporarily but it is all seems to be returning again and I don’t have the same coping mechanisms.
But enough with the mindfuck side of this whole thing, this is a time to dance on the rooftops and drink bubbles until you can fly. I hope you all join me in this celebration from around the world. I will save another entry to get into some of the other issues that came out of Tuesday’s appointment that are heavier in topic because this entry is solely devoted to saying “I am cancer free.”
From your dear friend,
In Remission
Sunday, August 10, 2014
Game Day
The time that elapses coming up to a big scan is always "dead time" for me. Like a wave rushing to shore that gets slower and slower until it finally crashes in a Big Bang. I am in the slow mode right now and am finding it hard to navigate this limbo until the crash where all things become known. Things have been going really well for me lately and I have finally become excited for the future again without fearing it as much. I have managed to get my crap together for the third time and it feels good. But now as this day gets closer and closer, I felt like time has started to stand still and will remain so until we got through this hump. It is like pre scan, during scan and post scan time periods and right now I feel this genuine reluctance to let myself get really happy about future plans until I know things are going to be okay. I tell people all the time that by thinking this way it in no way means that I am thinking negatively - I am just being prepared for all possible outcomes. It is safer that way at least for me especially considering my track record. I never want to be caught out ever again by that bitch called cancer.
I have found the weekend exhausting and emotional. And my level of frustration over some physical issues is making me mad. I wanted to scream and cry all at the same time last night because of this damn chest pain that has picked up momentum in the last few weeks. I am just so sick of being in pain and of course my mind plays out a dozen different scenarios surrounding its origins. Any change in anything is utterly terrifying. In addition my stomach has been awful and I just feel sick pretty much after every time I eat. Being chronically bogged down by these chronic ailments all the time when I should be in pretty good shape is demoralizing and I cant exactly talk about it all the time because it is boring. But just because it is boring and constant doesn't make it disappear for me. I live with these things every day and my patience is wearing thin. I want to wake up and feel okay. It is so draining dragging this tired aching body around all day and I feel like my happy face often hides the pain. If i looked at myself most days, I would have no clue what I had been through nor what I am still dealing with. That can be the tricky bit - what truly lies beneath. Because I am the last person who wants to look how I feel and I put so much daily effort into looking like the person I hope I will one day actually feel like. However others can think that the outside matches the inside and not realise what burdens i am carrying along in my fabulous handbag. Some days I feel like my bones are made of glass seeing as how fragile and weak they feel. I actually awake from the pain I feel when I sleep on my side and my hip presses into my mattress. What am I the bloody princess and the pea? But I keep trying and keep trudging on in the hope that all of this will one day be a bad dream I vaguely remember bits of.
For now - it is game day tomorrow and we will have to wait longer this time before we know what is the score. A whole week of wondering the what ifs until we sit down in a white sterile room trying to read the face of my oncologist again. I keep looking at my skin and pondering what is happening underneath. Are my cells behaving? Or have they commenced their own civil war again? One week is nothing and everything at the same time. So if you have a moment for me tomorrow around 10am send me some happy thoughts and here's hoping my next entry will again be nothing but good news!
Love and hugs from a slightly more fragile than normal OBB.
I have found the weekend exhausting and emotional. And my level of frustration over some physical issues is making me mad. I wanted to scream and cry all at the same time last night because of this damn chest pain that has picked up momentum in the last few weeks. I am just so sick of being in pain and of course my mind plays out a dozen different scenarios surrounding its origins. Any change in anything is utterly terrifying. In addition my stomach has been awful and I just feel sick pretty much after every time I eat. Being chronically bogged down by these chronic ailments all the time when I should be in pretty good shape is demoralizing and I cant exactly talk about it all the time because it is boring. But just because it is boring and constant doesn't make it disappear for me. I live with these things every day and my patience is wearing thin. I want to wake up and feel okay. It is so draining dragging this tired aching body around all day and I feel like my happy face often hides the pain. If i looked at myself most days, I would have no clue what I had been through nor what I am still dealing with. That can be the tricky bit - what truly lies beneath. Because I am the last person who wants to look how I feel and I put so much daily effort into looking like the person I hope I will one day actually feel like. However others can think that the outside matches the inside and not realise what burdens i am carrying along in my fabulous handbag. Some days I feel like my bones are made of glass seeing as how fragile and weak they feel. I actually awake from the pain I feel when I sleep on my side and my hip presses into my mattress. What am I the bloody princess and the pea? But I keep trying and keep trudging on in the hope that all of this will one day be a bad dream I vaguely remember bits of.
For now - it is game day tomorrow and we will have to wait longer this time before we know what is the score. A whole week of wondering the what ifs until we sit down in a white sterile room trying to read the face of my oncologist again. I keep looking at my skin and pondering what is happening underneath. Are my cells behaving? Or have they commenced their own civil war again? One week is nothing and everything at the same time. So if you have a moment for me tomorrow around 10am send me some happy thoughts and here's hoping my next entry will again be nothing but good news!
Love and hugs from a slightly more fragile than normal OBB.
Wednesday, July 30, 2014
About Family
It seems like if you are lucky, you start out your life in love with your parents. They are your everything and are meant to give you infinite amounts of love and support, shelter and nourishment. I was no exception to that and as I have written before, was privy to a wonderfully rich childhood where I never felt deprived, unsupported or unloved. But we all eventually grow up and in that period start to demand our independence and desire to find our own place in this world – AKA teenage hood. We go through a time where we don’t need our family or parents so much and that is perfectly okay. Independence is a natural step in our evolution and most parents value their children’s desire for it. It is as one would say “a developmental milestone.” But what I have noticed in recent years is that the pendulum spins back around and we begin to need or perhaps just want to be with our family more. Maybe it is triggered by starting our own families or other major events that allow us to see what our parents saw all those years ago…what is really important.
I just finished having my mother here for 2 weeks and it was wonderful. Just this morning when we were heading out the door to the airport, I said to her what I would miss most – her company. I have loved having her in the other room, to sit with and have a tea, giggle over silly things from the past, take a walk, get a daily massage…just knowing that she was there when I came home was comforting. She felt the exact same way especially seeing as she lives alone back in Canada. Being intertwined in our little displaced family for this time made her feel good. We both acknowledged how lucky we are that we genuinely like to be around one another as that is definitely not the case for everyone. Of course we quarrel and disagree but more often than not we enjoy being together and I feel a genuine emptiness when she is gone. This morning at the airport, the tears flowed and thankfully I had had the foresight to use waterproof mascara that day (thank you Maybelline). As my daughter and I walked away, I really started crying and my little cherub starting to do the same without truly understanding why we were crying. All she knew was that her mommy was sad and that she should be too. It reminds me of one of my most vivid and earliest childhood memories. I woke up one morning to the sound of crying. I went downstairs to the family room and my whole family was weeping. Being the youngest by 5 years, I was at an emotional disadvantage and didn’t quite understand that everyone was crying because my grandma had died. I was maybe 2 or 3 years old so I just started to cry too just like my daughter did today. It is easier to fall in line than to hang back on the sidelines. Maybe that kind of sums up the idea of family – it is much nicer and far more comforting to be part of something than to exist on the outskirts. I value the idea of family so much more now and maybe in doing so sometimes pushes me to make unrealistic expectations of them. Because that is the other side of it – family can also be shrouded in deficiencies and dysfunctions. It is only natural really for a group of people who spend decades together to encounter some sort of konflicts. We all carry unspoken expectations of one another and can sometimes be overly honest and harsh with one another because “we are family.” We push the unconditional love bit a little too far at times. I do feel that I have learned so much about family from my own and try to instill the same ideals and qualities into team Norcan. You learn a lot about family in times of crisis and I have had more than my share of it these last few years. It is only natural to put far more pressure and expectation on family than friends but the chance for disappointment than becomes far greater. Even family doesn’t always react the way we want or wish and we often put each other onto the highest pedestals. I am not sure what is the magic ingredient here to making everyone happy - maybe it is impossible to achieve. All I know is that everyone should feel safe, included and loved regardless of environment or circumstance because more often than not, we all just want the best for one another and no one wishes any ill will. Because in my view - life is far too short to quarrel over “stuff.” Unless someone has killed somebody else, you can get past it because the one certain thing is that you can never ever get time back. Once it has passed, it is gone forever. I understand all too well how fragile time is and hate to see it wasted. We sometimes lose sight of the important stuff and more importantly the big picture.
So as you can see I am quite melancholic and reflective in the wake of my mother’s departure. It is so hard to say goodbye especially with so many tough things around the corner. It feels like the fun times are over. The dreaded scan is in two weeks, summer holidays are done and I am already worrying about the dark cold winter approaching. Talk about looking at the glass half empty! Everything seems so much easier basked in warm sunshine! Again I have no gut feel as to how this scan will go and my body feels quite numb. I know on some level my body is feeling stress though as it appears in different ways like the way I run my tongue across my gums to the point of inflammation, the constant burning in my stomach, difficulty concentrating…I recognize the signs. 7 months have dwindled down to a couple weeks all too quickly. Like I told my mother this morning – I cannot do this a third time. Twice was enough and I am done with interruptions. So it must be that life will just have to continue on for me and everything will be okay. But it does help to remember that whatever will be my mom will always be there for me. And an army of family and friends wielding swords and shields wildly at whatever enemy appears. Because that is what love is – just being there when it matters.
I just finished having my mother here for 2 weeks and it was wonderful. Just this morning when we were heading out the door to the airport, I said to her what I would miss most – her company. I have loved having her in the other room, to sit with and have a tea, giggle over silly things from the past, take a walk, get a daily massage…just knowing that she was there when I came home was comforting. She felt the exact same way especially seeing as she lives alone back in Canada. Being intertwined in our little displaced family for this time made her feel good. We both acknowledged how lucky we are that we genuinely like to be around one another as that is definitely not the case for everyone. Of course we quarrel and disagree but more often than not we enjoy being together and I feel a genuine emptiness when she is gone. This morning at the airport, the tears flowed and thankfully I had had the foresight to use waterproof mascara that day (thank you Maybelline). As my daughter and I walked away, I really started crying and my little cherub starting to do the same without truly understanding why we were crying. All she knew was that her mommy was sad and that she should be too. It reminds me of one of my most vivid and earliest childhood memories. I woke up one morning to the sound of crying. I went downstairs to the family room and my whole family was weeping. Being the youngest by 5 years, I was at an emotional disadvantage and didn’t quite understand that everyone was crying because my grandma had died. I was maybe 2 or 3 years old so I just started to cry too just like my daughter did today. It is easier to fall in line than to hang back on the sidelines. Maybe that kind of sums up the idea of family – it is much nicer and far more comforting to be part of something than to exist on the outskirts. I value the idea of family so much more now and maybe in doing so sometimes pushes me to make unrealistic expectations of them. Because that is the other side of it – family can also be shrouded in deficiencies and dysfunctions. It is only natural really for a group of people who spend decades together to encounter some sort of konflicts. We all carry unspoken expectations of one another and can sometimes be overly honest and harsh with one another because “we are family.” We push the unconditional love bit a little too far at times. I do feel that I have learned so much about family from my own and try to instill the same ideals and qualities into team Norcan. You learn a lot about family in times of crisis and I have had more than my share of it these last few years. It is only natural to put far more pressure and expectation on family than friends but the chance for disappointment than becomes far greater. Even family doesn’t always react the way we want or wish and we often put each other onto the highest pedestals. I am not sure what is the magic ingredient here to making everyone happy - maybe it is impossible to achieve. All I know is that everyone should feel safe, included and loved regardless of environment or circumstance because more often than not, we all just want the best for one another and no one wishes any ill will. Because in my view - life is far too short to quarrel over “stuff.” Unless someone has killed somebody else, you can get past it because the one certain thing is that you can never ever get time back. Once it has passed, it is gone forever. I understand all too well how fragile time is and hate to see it wasted. We sometimes lose sight of the important stuff and more importantly the big picture.
So as you can see I am quite melancholic and reflective in the wake of my mother’s departure. It is so hard to say goodbye especially with so many tough things around the corner. It feels like the fun times are over. The dreaded scan is in two weeks, summer holidays are done and I am already worrying about the dark cold winter approaching. Talk about looking at the glass half empty! Everything seems so much easier basked in warm sunshine! Again I have no gut feel as to how this scan will go and my body feels quite numb. I know on some level my body is feeling stress though as it appears in different ways like the way I run my tongue across my gums to the point of inflammation, the constant burning in my stomach, difficulty concentrating…I recognize the signs. 7 months have dwindled down to a couple weeks all too quickly. Like I told my mother this morning – I cannot do this a third time. Twice was enough and I am done with interruptions. So it must be that life will just have to continue on for me and everything will be okay. But it does help to remember that whatever will be my mom will always be there for me. And an army of family and friends wielding swords and shields wildly at whatever enemy appears. Because that is what love is – just being there when it matters.
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