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

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