Wednesday, August 28, 2013

Dream Big or Go Home

“No matter how your heart is grieving, if you keep on believing, the dreams that you wish will come true.” Walt Disney Company
I am now 7 sessions away from finishing radiation and I think I can truly say that I am in the final stretch now. But I don't exactly feel that surge of energy that runners talk about when they start to make out the finish line. I am feeling quite the opposite really – utter exhaustion. I had been doing so much the last few weeks – enjoying life post chemo and feeling good. Gone were the sweat pants replaced with skinny jeans again, the blowdryer came back out to play and makeup become mandatory. I was feeling really good and people were noticing. Many people talked about me having this glow about me again and it made me feel positive because maybe it meant I was turning the corner because sick people just don't glow do they? But as the days passed and my skin grew redder and redder, the energy levels dropped. This past weekend I got home from a full day of activities and just couldn't move. My body forced me to realise it was running on empty when I woke up Monday with a pounding headache and couldn't stop throwing up. It wasn't the flu – it was my body's way of telling me it needed to stop and rest. I totally panicked though and started imagining horrible things while sitting alone in my living room trying to figure out who to call and how to get myself to the hospital for treatment. I sometimes imagine myself collapsing out of the blue and how I would get help. You could say there was some definite catastrophising going on. I burst into tears at the hospital that day and the technicians were quick to notice my messy hair, ashen face and sweat pants. I was not myself. You could say that again. I felt safer when my husband arrived...less alone, less vulnerable. We discussed things with them and decided that driving myself to and from the hospital every day was proving too much for me so alternate arrangements needed to be made. If I think back to the last time I did this, I did have a breakdown at the same exact point. That is how radiation works – it starts out slowly at first, unsuspectingly sucking little bits of energy here and there, but with every week the momentum increases until you feel on the brink of collapse. I have found myself here this week and I need to listen to my body. I have to be strict with myself - only doing the most important things and allow my body to rest every single day which is something I find so difficult to do. There is so much living to do out there and the thought of wasting it in my bed just feels so useless. But my body is resisting so much more this time and every morning I wake up feeling worse with literally every part of me aching down to my knuckles. I feel like a 90 year old woman most days. I know it isn't forever and I need to remind myself this is temporary. But god is this hard.

Yesterday I got distracted from my primary cancer and found myself at another hospital for my “other” cancer screening appointment. It is so difficult to worry about so many body parts that are seemingly ticking time bombs. One cancer is stressful enough! I had forgotten about my other threat the last 6 months with everything that had gone on but reality came racing back to me again. I always make jokes with my doctors and this serious German one was no exception. I think she was surprised by my upbeat mood considering the gory details that she had just read in my journal. But that is how I survive – it is my way of continuing on this long lonely road. I joked that I was running out of body parts to remove! Cancer patients are permitted to have fairly morbid senses of humour. I told her how I lucked out and ended up with the full cancer spa package as well – lucky me can they throw in a pedi as well? When we got down to business, we talked through things and she brought up the discussion of my ovaries again. “So what discussions have gone on regarding the removal of these?” she asked. Hmmm....simple question long answer. What I said next came straight from my heart, from that place where hope still lives. I told her that we had discussed this is exhaustive detail many times and that I had fought my oncologists to keep them in longer. I had the support of some of the specialists who believed there was no urgency for now and that making a young 33 year old woman menopausal potentially held greater risks. I explained that I was fully aware of the seriousness of my situation and my absolute first priority was to stay alive. However I still had dreams and in those dreams maybe just maybe one day I would get the chance to bring another child into this world. I almost feel na├»ve and silly saying this out loud considering I have been fighting for my life but like I said to the doctor – I need to believe in the future and in doing so I also need to hold onto my dreams because they are the things that keep me from falling into that deep dark hole. If I don't allow myself to dream then what the hell is the point of living? I just wasn't mentally prepared to close that door forever. She nodded and told me she understood where I was coming from. I think I shocked with my honesty but after being in this cancer game for so long, I realised that you just can't waste any more time beating around the bush. Honesty is everything.

I told her I needed time. Time to process things, time to make decisions and time to recover from all these traumas. I told her I was imposing a 4 month cancer break on myself when I finished radiation. I don't want to set foot in a doctors office until the New Year unless I absolutely have to. No scans, no bloodtests, no controls. I need to step out of this world for a little while or I am afraid I will drown under the pressure of it all. There is so much riding on that next scan for me. My life is depending on it so I need time to prepare for that moment when I will need to be the bravest and strongest I have ever been. And when was a holiday ever a bad idea? :)


Friday, August 16, 2013

What would you do

It is raining today. Rain always brings out the melancholy in me. It makes me reflect and think about things. After seeing my old physio today whom I havent seen in over a year, it got me thinking...We discussed what had happened since we last met and he read through all my hospital letters and reports. I swear - I felt like he was looking at me like I was a dead woman walking. I kept telling him how positive I have tried to be and that the situation sucks total crap but that we still have hope - lots of it. But I could see it in his face - fear. I guess I have become quite skilled at seeing it in people even though most of the time everyone tries to hide it. But how could anyone not be afraid when faced with the unimaginable? I sometimes sanity check with my mother about everything because I can imagine how hard this is for her. She has to watch her baby daughter go through all of this hell, all of this suffering and she can´t do anything about it. She rarely cries in front of me and keeps a brave face most times but I know how much this kills her. I realise now with my own daughter how we as parents do everything we can to hide any pain or suffering from our children. We want to protect them as best we can. I also see denial in others which is by no means a fault but rather a means of coping with a very tough situation. No one wants to go the dark place where the monster lurks and you know what? I get it. I understand and I learn to hold back on voicing my fears to those people. They can´t handle it and that is okay. Then there are some people who have slowly drifted off into the background too as things grew more and more serious and I don´t get angry about it. This is too much for some people and I can´t judge them for checking out. I miss some of them but I understand. Sometimes morbidly I wonder if new people I meet who learn about my story get afraid of getting too close to me for fear of what could happen. Probably a totally unnecessary concern on my part and I am most likely the only one thinking about it but I wonder all the same. Others want simply want to fix things and find themselves going crazy when there is nothing to do but sit and just wait out whatever storm has arrived. I often think of my dear husband and the struggles he endures alongside me - completely helpless and unable to take away my pain or be able to do any of this journey for me. I think it must be awful to just watch the person you love so much struggle and at times completely fall apart. Maybe that is what real love is? Being able to endure tests like this and still believe in yourselves as a couple. I will never forget something he said to me a few months ago when I got sad because I had to stay home and miss an event. He told me that we had the rest of our lives to do all the things we wanted to do together so for right now my job was to get through this. He would be there waiting for me on the other side. And they say romance is dead?

Many times throughout this journey I have been honest about times I found especially tough and I think it scared some of you. I let my guard down and that can sometimes be miscontrued as giving up. Rest assured this soldier will never do that. I am realising that I can´t always be positive all the time and I am finding more and more that after nearly three years of this fight, I am finding it harder and more tiring to hide the pain under a tight awkward smile. I am finding it tougher to play the cheerleader and spin everything in a positive light. It can be so tiring. Emotions in a crisis go up and down with little warning. And I am feeling the pull of the pendulum´s swing more and more. I can feel angry at the fact that some of the best bits of my life have been stolen from me in one moment and then feel motivated to seek out the pieces that still remain and put it all back together again. It is all so fluid and changes constantly.

When thinking of my support network, I still think alot about my dad and how he would deal with all of this. What kind of support would he provide? I have had the urge in the past few weeks to call him. Just to talk. He always had a solution for things and he also was so good at just listening. I know that no matter where I was in the world, if I needed him, he would be on a plane on his way to me within the hour. I think all of this would make him so sad and angry but also empowered to fight alongside me. God he would have made one hell of a member of Team OBB. I think he would be proud of me. Not because of the Ph.D I never got, or the huge power job I left, or the giant house I don´t need. He would be proud of the man I found and call my husband. He would be proud of the gorgeous little girl that we brought into this world. He would be proud of the way I carried myself through this marathon of hardships. He would be proud of my ability to still see hope and light in this world.  He would be proud of the person I have become. I know in some way, somehow...he knows.


Wednesday, August 14, 2013

Once a Soldier Always a Soldier

I need to talk. I need to write down all the things running through my head today, yesterday and last week. It seems like the last few days my brain has kicked into overdrive and there is a fire under my feet. I have come up with all these ideas that i want to do of all of sudden which most likely coincides with my body actually starting the healing process from chemo.   Instead of coming up for air this week after another hit of poison, I am just simply coming up for air. I decided I wanted my doctors to apply for me to go away to a rehab centre (not the drug kind where Lilo would be my roomie) after radiation so I could actually take a chunk of time on my own to focus on getting better. The thought of two weeks away from my family feels like a long time but it is about time I prioritised my health and for those of you who are parents, you will understand how easy it is to put yourself second, third, tenth...Right now I actually don´t want to take the proper time out of my day to rest as there is always something else I want to do that seems much more interesting. I actually loathe taking naps and sitting watching tv all day which is pretty much what one days while sick. I have also been thinking about when and how I will return to work as that is something else I feel i need to sort out. I have no idea how my body and mind will react to that change but I am itching to make at least a plan. And then I decided I needed a physical change and I had this urge to want to dye my hair...blond. I didn´t stop there...I also made some calls and found out how i could participate as part of this cancer charity in the Oslo Marathon next month. Ok I am not totally crazy people - I am not actually going to do a marathon. I want to try and do the 10K distance and I would be walking which will be a big enough challenge. I relayed all of these things to Dr Sunshine yesterday and quizzed her about each one and whether they were all possible. Questions ranged from "Will my hair fall out if I dye it now?", "Can my body handle a 10K walk now?", "When is best time to go back to work?" and "When will my legs stop aching"? Her response was simple. Wait. She told me to wait a few months before I did anything dramatic or that constituted a big change. My impatience and desire for change was common for people in crisis, she told me. Crisis? Who me? I am as cool as a cucumber! To be honest I am even struggling to stay focused enough to write this entry out as i am actually itching to get on with the next activity. I think a big deep breath is in order...for everything. I do think she is right and let´s face it, she has been right most of the time. I have been in crisis for over 2.5 years now and my body is recognising this hyped up crazy feeling as normal. I even feel it when I have a near fall on the steps, when my daughter trips down a hill, when I nearly drop a plate or someone brakes suddenly in front of me - I feel this jolt and shock of energy-like pain ripple through the right side of my chest. The side that held my dark passanger. It is a new sensation but I clearly recognise it as anxiety and stress. It is like my body has adapted into this kind of soldier on the battlefield - always alert and ready for the next attack. Being enemy ready also makes it impossible to ever truly relax. And I constantly feel like I have to face different fears on a near daily basis. The problem is that I don´t know when the enemy will retreat forever. I don´t know when I will be allowed to put my weapon down and walk off into the sunset without looking over my shoulder again. I so want the relief of knowing it is well and truly over. So i guess jumping into all these things could be my way of dealing with this ongoing Cancergate crisis - distractions that allow me to get some kind of control back in my life. Because unlike the cells in my body, I can control my recovery and rehabilitation. I can go to physio to get stronger, I can do yoga to settle my mind, I can get enough rest to allow my body to regenerate, I can eat healthy clean food to provide the right fuel to move forward and I can dye my hair whatever colour I fancy...these are things I can do. The real challenge lies in letting go of those things that I have no control over and just continuing to live my life one day at a time.


Thursday, August 8, 2013

Musings from the Radiation Chapter

I have now completed four sessions of my new full time job - the 2013 radiation project. In case some of you aren´t familiar with the whole radiation dealio (or rads if you are more intimately acquainted with it), I can fill you in.

So radiation is meant to be the final clean up act following chemo and should kill off the cancer cells that were weakened by chemo. That is definitely my preferred game plan and I try to channel it by whispering during every rads session, "Die cells, die!" God I hope they are listening. The thing about rads is that the actual process of lying down on a very uncomfortable table resembling a spinal board and having this radiactive beam shot at you is completely painless. I still half expect to feel some kind of pain when the huge ass machine starts wizzing around me and I can almost visualise this bright yellow beam reaching into my chest wall seeking out the enemy. But of course radiation is invisible. The process for me is 25 sessions every day with the exception of weekends. So you see - it really is like a full time job and equally as exhausting. One of the main side effects of rads is fatigue so naps become daily protocol. I found myself feeling quite anxious about it all when I showed up on Monday for round 1 as I felt kinda in the dark about the whole thing. The last time i did this, I felt prepared and my network had informed me of what to expect, how to treat side effects and what would happen longer term. But this round 2 (similar to my chemo regime) was uncharted territory as my doctor said. They genuinely couldn´t really tell me what would happen and we would have to deal with things as they came. The radiation tech gave me a mini anxiety attack by telling me that we would need to see how things go and if I started to develop open sores we would have to consider stopping. Awesome! Welcome to leprosy island folks. There is so much worry in this game and I hate not knowing what will happen and pondering all the possible scenarios. And you know what? There is this screen on the ceiling in the rads room that lights up when the machine is on and goes dark when it´s off. The scene on the screen is straight out of the rainforest filled with lush greenery. I am guessing this tranquil scene is meant to distract and relax you however I could not help but notice that a number of leaves had burn marks on them. It made me think of my own skin sizzling under the radiation beams and definitely didn´t leave me feeling at peace. Now it is all i can focus when I am lying there every single day...burning. Oh the places our minds go.

So as I continue to get the job done, my mind is already focusing on the future and what will happen next. The plan is to finish the radiation, wait three months and do another PET. That scan feels so ominous to me and holds so much hope and fear tangled all together. I want to believe it will be okay and that I will be free from this monster but I find it so hard to think that way when everything has gone so terribly wrong. In the last two and half years every time we have been given two possible outcomes, we always have ended up with the worst one. When will our luck change? I seriously need about a million four leaf clovers, a thousand horse shoes and a pot of gold at the end of my rainbow. Do you think they deliver? :) It just all feels so final right now - we have done everything we can again and now we have to wait and see what happens. There is so much helplessness in the situation and so much fear. I am so damn scared of that monster under the bed. That it wont disapear when I turn on the lights again.