Saturday, September 28, 2013

Call me Rare

"The most beautiful people I´ve known are those who have known trials, have known struggles, have known loss, and have found their way out of the depths."
Elisabeth Kubler-Ross

Since I last wrote, I was in a very dark place and I was feeling like things were utterly hopeless. A week on, I can´t say that much has changed but I guess it has become less of a shock and more of a daily struggle to get through. We don´t have any decisions from the higher powers regarding our case but I have to say that my husband is just amazing. He has pulled energy and strength from the deepest of places to fight for fight for us. He is there when I cannot be. He speaks when all I can do is cry. He understands my anger and bitterness and never judges. I am so lucky to have him here by my side even if his fanatical cleaning methods drive me mad sometimes. Because at the end of the day all that little stuff is pretty insignificant and the most important thing is to have someone who loves you, cares for you and will fight to the ends of the earth for you. I think that is what he has done this week is maybe the most romantic thing he has ever done for me and it is love in it purest sense. Forget the flowers, the diamonds, the fancy dinners - when the chips are down and life feels hopeless and this person can manage to make you feel hope again, then you know are have picked the right one.

Our week has been difficult. I spent a good part of it crying and seemed to burst into tears whenever someone asked me how I was doing. Simple words that can become like a loaded gun in times of stress. I started seeing a therapist this week but I think it has taken two sessions to just get through all my problems and we are nowhere near finding any solutions yet. But at least I am doing something proactive. I have been feeling very low and my reaction to this latest blow is actually worse then it was hearing that I had cancer twice. I just cant get out of this quick sand and it consumes more and more of me every day. I think that is what spurred my husband into action - seeing how broken and distraught his wife had become. It isn´t me. I am stronger then this and he knows it. Amidst meetings and phone calls, we also hit another bout of unfortunate luck. Ya - I know can u frickin´believe it? I went it Tuesday for a routine rinsing of my central port because you need to do this every 4-6 weeks to keep it infection free. I also was going in for a heart check as with all this heightened stress in my life, my heart was going bananas again. But when they tried to push the saltwater through my catheter nothing happened except pain. Oh no...I actually instantly burst into tears with the nurse who assured it would be okay. I just couldn´t take anymore going wrong right now. After a doctor and anaesthetic nurse came to check it out, we concluded it needed to come out fairly quickly so an appointment was made for a Thursday. Getting the port out is a pretty minor procedure and involves sedation and local anaesthesia so I thought it would be ok. Not something I wanted to do but it was minor compared to the long list of awful things I had already done. So I arrived at the hospital early Thursday for blood tests and then proceeded to wait for hours and hours. I had become quite nervous when they finally came for me as I always hate getting an IV in. But when I arrived at the operating suite, I met some old friends who had looked after me before. The anaesthesiologist greeted me like an old friend and said he knew my veins and would do his best to hit a home run. As the procedure got under way, I was doing ok until the doctor proclaimed as he pulled the contraption out that half of it was missing. Hmmm...that isn´t what I wanted to hear. This is an extremely rare complication that almost never happens but this is me we are talking about so perhaps not so surprising. I was taken immediately to radialogy where they took xrays to locate the missing 12cm of wiring. And you know where they found it? In the right atrium of my heart!!! Perhaps this was the source of some of my heart problems? They informed me that they would be removing immediately and accessing the big vein in my groin and travelling all the way up to my heart to pull this sucker out. Yes I know it sounded crazy to me too and I was so unprepared for it as was my husband who couldn´t help but be terrified on my behalf. So off they went up and away through my vein and I could actually feel them fiddling away in my chest while trying to locate this thing.  Super strange feeling. But they got it and it was finally out. I was relieved but my husband and I nearly collapsed from the stress of the moment and the whole last week really. Enough was enough. So I spent another night in hospital with all my old nurses who told me I really had to stop showing up like this. Tell me about it. When the doctors did their rounds in the morning, they said they hadn´t been surprised when they heard it was me who had encountered this rare complication. If something is weird or rare, it most likely happens to me. One good thing came out of this medical emergency though - it made me forget about our other big emergency which was actually kinda nice. But I am really done now. I am tired of being brave and being afraid but having to do things anyway. I am tired of being so anxious and stressed that my body begins shaking at the slighest thing. We deserve a few months of rest before the next merry go round begins again. We need it. So i am hoping I can stay out of a hospital for at least a week and that this outstanding case we are fighting goes our way. We are good people who have hit some really big bumps and just need a break. I don´t want to beg for some relief but never say never.

A fragile and slightly sore,


Friday, September 20, 2013

Bad Timing and Luck Required

I know I usually try and focus on the bright side of life and find the funny in the serious but the last few days have been tough - culminating with a complete emotional breakdown yesterday. No I haven´t been given a terminal sentence and no one has told me that my cancer is back. Instead we took a hit from the system that is there to help those who become sick. Now I don´t want this entry to become an open letter criticising a health care and social system because for the most part my husband and I have felt very well looked after by it and we are eternally grateful for this. It is a system that for the most part looks after the people who are in it, but this week I just felt like this system broke me in two.

Many of the decisions we have made and the decisions the cancer cells in my body have made over the past few years failed to fit neatly into the desired timeframes. We moved to a new country a few months before I gave birth therein forfeiting certain rights and remunerations. We were given a first cancer diagnosis before I had time to get my life back on track post baby and paid a price for that. We were given a second cancer diagnosis that came too soon for me to be included in the system. Like my husband said to our case worker a few months earlier - "We really can´t afford for my wife to get cancer right now." And we really can´t. I have been lucky enough to have had my own financial buffers to bridge the initial gap. We also had some guardian angels who have stepped in and helped ease the burden of falling between the lines again and we are forever grateful for that. But what happens when for some insane reason, they find a reason, or the law finds a reason for me to be excluded again. After falling on the wrong side of the line so many times before, I am just out of energy to dig myself out of the hole I fell in yesterday. And God did I cry. I sobbed - deep gutteral sounds from deep within my soul. The anger I felt at the situation, at the rules, at the fact that I feel like all of this was the result of one thing - CANCER. Cancer has truly fucked with my life and my resilience feels at an all time low. I have always been proud at the way in which I have bounced back from all these knocks, but I just don´t feel like I can get back up right now. It is becoming near impossible to imagine something actually going our way when so much has gone horribly wrong. How do i shift my thinking? How do i get out from under this black cloud? Yesterday I got a glimpse into the reality of many Americans who face a serious illness without insurance and remember hearing of people forced to work through chemo and surgery because they had no choice. Is that what I have to do even though I know for absolute certain that my body can´t handle that right now? My husband is thankfully much calmer then me and less inclined to catastrophic thinking which helps bring me down slightly. And there is no way he would let me juggle my health for financial reasons.  But I just don´t feel like by having cancer, we should have to struggle more then we already are. Maybe this is me sounding way too entitled and thinking I deserve more but I feel like my efforts to contribute and work full time have fallen to the wayside. I can´t win and I feel like the system only sees me as a series of numbers to plug into a formula that works or doesn´t. And is it okay for me to end up in a depression or have a breakdown because of financial stress over the future while I try and recover from the atrocities my body has been through? This just doesnt make sense to me and I can´t pretend that everything is okay. None of this is okay and just the amount of stress the last 4 days have brought me isn´t okay. I really felt like I couldn´t cope and was drowning. I keep thinking now how this situation could get worse and when the answer is - terminal cancer, you know that you are not in the greatest of places. I hope so much that this gets resolved in a few days (it has to be okay right - I figure that one person can only take so much) and I know how many people are putting their neck out for me but god do I find it hard to see the silver lining here. Life feels so unfair. Cancer - why did you have to come and monsoon on my parade?

Please send me happy positive thoughts for next week that somehow we find a way for everything to be okay again. Thanks for the support - I need a double dose of it this week.

OBB (writing from under a great big boulder that has got me stuck!)

Tuesday, September 17, 2013

One Ticket to Crazy Town Please

This is the third attempt at a blog entry in a week and hopefully I can finally write something that makes sense, is worth reading and accurately captures what is happening in my head right now. It is jumbled and messy - thoughts are stop starting all the time. I feel like I am on a one way train to Crazy Town.

I remember feeling similarily the last time I finished treatment - mixed up, directionless, anxious and just abit lost. Finishing treatment is a great thing and from the outside looking in, one would imagine you would feel so relieved and happy to be done with such a horrible thing. But what you don´t know is that when you are categorised as a "patient", you can lean on it like a crutch. People don´t expect as much from you and you are allowed to just be. However when you are done, expectations return and many people think that you are automatically back to normal. But the truth is that you never really get back to any kind of normal ever again because my definition of normal is forever changed. Just living is good enough.  It is also scary to lose the routine and comfort that comes with a set plan that you must simply follow through, no questions asked. But then suddenly you are cut loose, to navigate the world again without the safety net that strangely comes with cancer. When you walk out those doors after that last treatment, I compare the feeling to walking straight off a cliff. Freefalling into nowhere and having no clue where you will land. Many fellow patients have echoed this sentiment at the close of their treatments as well so I am not the only soldier in this boat.  I guess it is important for the people supporting someone who has battled cancer to remember that things don´t necessarily get easier when things are done and that we actually might require even more support when the cancer curtain closes. I have thoughts that overwhelm me and this suffocating pressure to get my life back to normal now but then my body forces me to remember what it has been through. I think last weekend was a tough love lesson from my own body to tell me to slow the f#c% down. Do I listen? Not always. Like today - something happened when I woke up that threw me into another hysterical tailspin. I was running around like a chicken with its head cut off and my husband was cool as a cucumber. I thought to myself - why can´t I stop sweating the small stuff? I had cancer for god´s sake - this isn´t life or death. And this anger...god where is it coming from? I feel so much of it right now - at people, situations...I wanted to scream at this man who took the last 2 bbq chickens at the shop recently while I stood beside him clearly waiting for the same thing! I wanted to pull out my cancer card and shove it in his face. Of course I am a classy lady and did nothing of the kind but boy did I want to. And now today with this new situation i have to sort out - I just don´t feel like I have the capacity to manage it but I have to and it makes me so mad. Why can´t anything go smoothly I ask - dear universe? (Yes I am playing the victim today so just deal with it) Why can´t you give my husband and I, some kind of a break? So much of our life together has felt like this uphill battle and I can´t help but turn all the blame and anger towards CANCER! I keep thinking that we would never be dealing with this or that if cancer had not come to town, not once but twice. And this poisonous anger seeps its way into all aspects of my life right now. It hardly brings out the best in me so I use my reserve energy to project the image that everything is okay. I do my hair, I put on nice clothes, I do what has to be done in the house to keep it clean, I write a little love note to my daughter in her lunch box and I try to be a good wife. It isn´t like there is an option to simply fall apart but boy do I have the urge to smash a few plates on the wall. Maybe it is part of being a woman and a mother that forces us to dig deep and hang on for dear life. Just because I feel like parts of me are crumbling, it doesn´t mean that my daughter´s hair won´t be brushed and plaited every morning. Just because I want to scream, it doesn´t mean that I can´t kiss my husband goodnight. Just because I feel obsolete sometimes, it doesn´t mean that I can´t be there to support a friend go through her own pain. I have written about this before but I will mention it again and again because it is probably one of the most important lessons I have learned through my cancer experience. Everyone has got their something - some of us cope with our challenges differently so it is essential that those of us that are stronger have a responsibility to be there for those who feel weak. Just because I have had cancer, it doesn´t mean i can´t be a shoulder to cry on for someone else. Life isn´t a competition and it isn´t a contest of who is most miserable or worse off. We just need to be there for one another as much as we can. Life is hard enough don´t you think?


Tuesday, September 10, 2013

Not The Weekend We Had Planned

Warning - this is a long story. :)

Well this past weekend was meant to be one of celebration. I had finished my last radiation session on Friday and my husband´s best friend was getting married on Saturday up in the mountains. Everything seemed set for a child free weekend of fun and a glass of bubbly or two. But the gods of fate had other plans for us unfortunately.

I had not had the best of weeks leading up to this past weekend and had spent much of my time feeling exhausted, nauseous and hanging onto the toilet for dear life. The doctors weren´t sure what was going on but chalked it up to nausea related to radiation and general exhaustion. So perhaps I was being over ambitious going to this wedding but I so wanted to participate in something fun and support my husband as best man and of course his friend who served as "minister" for our own wedding. So we went for it and drove the four hours with our friends to this beautiful place in the mountains. I remember saying how I had imposed a hospital ban on myself for at least a month and wanted to reconnect with the world outside of those white sterile walls. Hmmm...had I tempted fate with those words?

So back to my story - the wedding ceremony was beautiful and I fought back tears in a superficial attempt to not ruin my eye makeup. Always the vain one! Afterwards four of us sat in a nearby restaurant waiting for the drinks reception to begin and I suddenly felt a pain in my left shoulder and chest. It came out of the blue and I remarked on it out loud. Not a big deal - probably some pulled muscle or nerve i thought. We made our way to the reception shortly after and chatted with everyone. A short while later, I was sitting at a table beside my husband and a friend and out of the blue, I felt very unwell very quickly. I felt hot and suddenly my heart starting beating a mile a minute and I thought it would beat right out of my chest. I felt I was collapsing and in all honesty, I thought I was dying. My immediate thought went to my father and I thought - "I am going to die the same way he did." Everything becomes alittle cloudy after that and I can´t tell you how long it took for my heart to stop racing. Next thing I was lying on the floor covered in blankets with breathing problems and I couldnt feel my arms or legs. I was so scared and my anxiety went to stratospheric levels which definitely didnt help at all. Luckily there was doctor at the wedding and she was truly amazing and brought me some reassurance. She actually reminded me of Dr Sunshine which helped calm me. The ambulance was called and now all we could do was wait. My body was shaking uncontrollably and I just didn´t know what was happening. My husband was my rock and kept it together so well - not showing a hint of how unbelievably terrified he really was. We were far from anything and that distance was scary. Then I found myself bein wheeled into an ambulance and once they had done enough tests to prove I was stable enough to make the drive to the closest medical centre, we were off. I remember hearing my husband on the phone in the front seat speaking to his father and also our daughter. She asked him if she could talk to mama and he calmly said that I was in the bathroom and couldn´t talk. I think we both had lumps in our throat at that moment.  Forty minutes later, we arrived at a tiny medical centre tucked away in the mountains and after reviewing my complex history, it was not long before we were put back in the ambulance and off on a 1.5 hour trip to the closest major hospital. I started to feel bit better then and the odd sensations were wearing off and I just felt so tired and just plain scared.  We pulled into the hospital and a whole new slew of tests began again. It was kind of funny actually - my husband looking so spiffy in his suit and me with no clothes on but a blanket, seeing as a cocktail dress and heels doesn´t quite lend itself to hospital examinations. We didn´t have anything with us and everything was in a hotel room 2 hours away including phone chargers and toothbrushes!

They began tests to rule out the obvious culprit - a heart attack. Thankfully there appeared to be no signs of that so next was a blood clot. It was then that I got to experience a whole new medical procedure that was so frickin awful! Ever get an arterial blood test? Guess what - it sucks eggs and I was lucky enough to get four attempts at getting a sample. They put a needle into the inside of your wrist until they get to an artery. The anaesthesiologist said it was of the more painful procedures - I can concur on that. I seriously started crying when they told me they needed to do it a third time. My body started shaking uncontrollably after every attempt and the problem is that if your body isn´t relaxed no blood will come out. It truly sucked but as my tough love husband told me at the time - they are doing this for a good reason to find out what is wrong so grin and bear it girl. When that test came back negative, I was sent to intensive care for the night and round the clock heart monitoring. It was 2am by the time we were settled and my husband and I were wiped out. We joked that no one could have picked a better way of getting out of a best man´s speech and that it was one hell of a wedding if one of its guests was in intensive care before the dinner even started! Always gotta find the funny side of everything. So by morning, my heart had been stabile and instead of being picked up by our friends to go home, we were told we were taking another ambulance back to Oslo to be admitted to my "home hospital." The fun continues...So a 2 hour trip and another assessment in Emergency, we found ourselves back in C-Town again. At least it was familiar and all the nurses and doctors knew me and I felt especially pleased that I was not there to get chemo this time. After a good night of sleep, it was time for a round table with the doctors to figure out what the hell happened. They wanted a ultrasound of my heart to rule out damage from treatment but we were most likely looking at an unexplained and spontaneous panic attack. I am happy that it was nothing serious but I can´t help but be afraid of it happening again. I wasn´t worrying about anything, I wasn´t thinking the worst case - I was just trying to be normal and enjoy life. I keep thinking about it happening when I am alone or with my daughter. What do I do? I already felt so vulnerable already and with this latest episode, I feel even more so. I just want to get on with life and stop taking it easy and stop being afraid. My husband and I just don´t need anymore right now. We are at the max of what we can manage and the stress of it all takes its toll. One emergency after another it seems. I kept thinking that I needed to write a will while lying in the ambulance. That I hadn´t organised everything I needed to and no one would know what I wanted. It doesnt get more morbid then this people but even as the dust has settled and I am better now, I still feel the same way. No one knows what is going to happen - regardless of being healthy or sick. Maybe doing something like that will just make me feel more safe and secure. I was a girl guide after all and wasn´t our motto " Be Prepared"?

So after the last few days, I am forced to take the next week to rest and not do anything. My body has clearly sent me a message that enough is enough. I have to listen to it. I gueAnd seriously universe - can you please give my husband and I some kind of break? We just can´t handle anymore right now and just want a few moments together where we can forget about all the bad stuff. So we can just be. I think we more then deserve at least an evening???

Long story I know but it was a long weekend. And I want to congratulate Hege and Halvor on their happy wedding day. I so hope that our crisis didn´t take anything away from your special day. We are so happy for you and hope to properly celebrate with you both soon.