Sunday, September 28, 2014

Coming Back from the Wars

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

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

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

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

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

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

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

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

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

 A pretty wiped out OBB

Saturday, September 6, 2014

A Box of Dreams

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

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

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

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

So the situation is as follows:

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

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

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

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

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