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.

OBB

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.

OBB

Too Busy for Cancer

Hi Everyone,

I realise again that time has escaped me and it has been weeks since I wrote. I think summer is such a busy time and having my monkey at home full time really makes it near impossible to find time to write. I have never been able to just sit down with distractions all around and write something worth reading. So I am trying to write today despite the multitude of things happening around me and give you an update. I know how many of you interpret my silence as something bad so I don't want anyone to worry.

What has happened since round 4 concluded? Well I am still trying to find my "normal" and am realising what a number this chemo has done to me. Every day I wake up, it is a lottery in terms of how I will feel. Some days are better and others awful. I honestly feel my body screaming out in protest to the abuse it has been through. My stomach will never been the same again and the tiniest imbalance sets it off. It makes it hard to make plans as I dont know what the day will bring. I think my daughter is really picking up on what is happening with me as she has said to me quite often (in an exasperated tone) "Mommy - you can't lie down and rest all the time! You have to be with me!¨ Her playing has also evolved and she informed me earlier this week that the mud concoction she was making was in fact medicine to make my tummy feel better. Bless her little soul. I love her so much and she continues to make me push myself to be here...living in the present and hoping for the future.

My doctor called me last week with the update from the CT planning session which was to determine whether I could get anymore radiation. If you remember, we tried to do this back in February but it was deemed too dangerous at the time. You know it is funny when I think back to the beginning of chapter two when we were told it was cancer again. My doctors gave me three possible treatment options and we would give me the best and safest option. But now nearly 4 months later, I somehow ended up getting all three things - surgery, chemo and now radiation - lucky me...not! Yes my doctor has found a way to give me more radiation. Perhaps it is due to time passing and more healing happening from my initial radiation or the new organic material they put in during the operation. Whatever it is - I am starting 25 sessions of radiation in a week and half. It will suck big time as my skin is still so sensitive and I will burn more easily then before. When I asked about the risks involved, he told me that the risk of not doing it outweighed the potential side effects I could get. And the side effects are potentially major but we hope I get lucky and dont end up with necrosis (this is essentially tissue death and can be very serious) or god forbid another type of cancer. He also told me to not bother googling anything about this as it was new territory and there was little to no literature on it. He knows me so well! I joked about how my case will make a great paper one day for them to publish. He laughed and said that they never saw me in that way - as in a patient and an opportunity for publicity. But I reassured him and told him I was more than happy to be a part of the future - a part of furthering research in this specific area of breast cancer treatment. I want my story to help others and make a difference somehow. What he said next surprised me so much as he has always been incredibly conservative in terms of what he has told me about my situation. He has been the harbinger of bad news for so long and I know it is impossible for him to promise something he has no guarantee on but he told me ¨I will look forward to publishing something about how I cured you.¨ I was so shocked by his words but they provided such a comfort to me and gave me hope. Hope is everything to a cancer patient and feeling that your doctor believes in you can help you get through the darker times. So I will face the next hurdle as best I can and try to imagine a time when cancer might not feel like such a big part of my life. A time when things will be different for me...a better life far far away from cancer island. Like I said - hope is everything.

Hope everyone is enjoying summer. We are seeing lots of sun in Norway. Me likey alot.

OBB xxx

The Final Frontier

I remember when I wrote about finishing the C-spa the first time nearly two years ago. I was elated, ecstatic and so overjoyed to be done with it. I ordered a cake for the nurses and my husband and I celebrated with cake and ipads. It was wonderful. Unfortunately the same elation and joy wasnt with us this week as I went in for my last visit. I think I have grown alittle too jaded with all this cancer crap. I of course want to recognise what an enormous feat it is getting through the last 3 months which were genuinely the hardest time I have ever experienced in my life. But I also want to forget them...fast. Even thinking about things related around it or simply touching the backpack I took with me to the hospital brings on subtle but noticeable waves of nausea. I am traumatised. I went to hell and back and I never want to go back. I think therein lies my problem because the first time you finish with it, you think - ok this is done, go me, I am a rockstar and I will never ever have to do this again. But the second time, your initial nightmare has already been realised and you aren´t as innocent or trusting anymore. I most definitely do not want to do this again and I want to scream positivity from the rooftops but I am also a cancer veteran. I know what can be hiding in the cellar - I have known beasts from the most terrifying places who can hunt you down. So maybe that is why I am not busting out the cake quite  yet or deciding what I will buy to commemorate this milestone. And also maybe I dont want to even give another inch to cancer itself. Why celebrate anything revolving around it. I guess I could simply celebrate the fact that I am alive. Simple as that. And maybe buy some nice shoes?

I want to thank you all for being such a kick ass team through the last few months. I honestly had parcels and cards in my postbox daily and they so helped lift me up. You guys have really been here for the long haul and we have all been on this wild ride for nearly 2 and a half years now. God that is a long time to write about one thing eh? I guess that is how books are written. :)

I will write more when the brain is alittle more together as I am still far from in "perfect working order." In terms of my journey - no news for a week as to what happens next so I will enjoy the beautiful weather we are having, indulge in a Norwegian strawberry and just watch the world go by.

Love to you all,

OBB

Normal is Good

I realise it has nearly been 2 weeks since I last wrote and I wanted to ensure no one was worrying about me. Silence in the cancer blogging world can often be interpreted as trouble. However I am happy to report that I have not been able to write because I have been far too busy. My husband and daughter arrived home from holiday, my mother was staying with us and then my sister and baby arrived last week. It was a busy house to say the least and there were few moments to slow down and reflect. But today the house is quiet and the rooms empty. I made my last drive to the airport early this morning to say goodbye to the last of my family. I am always to sentimental about goodbyes and the emptiness that often follows. We did manage to have a really great time and fit lots in despite my energy challenges. I love to be with my family as I don´t get to see them very often so it was a definite treat for me. Luckily my blood values were also in high spirits as tests last week showed that I wasn´t in the danger zone which was great. And I am pleased to report that I still have hair on my head and I in no way resemble someone with a comeover or receding hairline. Yeah me! I was able to show it off to my doctor who had assured me back in May that it would all be gone. Sometimes it is nice to prove those medical peeps wrong!

Now I am a dead woman walking. Well sorta- I feel like it some ways. I am two days away from my final trip to the C Spa and dreading it. I know it is the last one but god does it feel like a mountain to get over. I think of the 7 days of sheer hell ahead and it makes me nauseous already. Maybe it will go better since I know it is the last time but I don´t know. I haven´t had any breaks so far so here is hoping.

In other news, I made a little trip to the hospital today for a CT planning session to determine whether I will do more radiation when the chemo is done. It is pretty simple and all you do is lie in the CT machine while they make drawings on the radiation fields on your skin. For the first time I got three "tattoos" which will never go away that will mark where things should be. The nurse apologised for marking me but I laughed and said that my chest area was already a mess of scars and marks so what was alittle more? Now we wait and see what happens.

I guess that is all the news from me. Bit slow on the cancer front which is actually a good thing. It means that i am actually out living my life and being distracted by normal things. I will finish with a funny little story - I was getting out of the shower a few days ago and my daughter barged in to the bathroom. She pointed at my chest where my port was sitting under my skin and exclaimed (in norwegian) "Mama - you have a little boob. Where did you get it from?" I had to laugh at her curiosity and general excitement over her mother having a tiny boob. Kids are hilarious and I am so lucky to have that ball of sunshine in my life. She keeps me going.

So I will start building up my arsenal over the weekend and drawing up a final battle plan. I need this medicine to do its job and find every last one of those bloody cells and kill them mercilessly. Kill, kill, kill - I will cry. And I will win.

Fingers crossed the week goes as okay as it can.

OBB

PS: I want to thank my legion of supporters and cheerleaders who really picked me up when I was down. I was in a dark place when I wrote the last entry and I didnt think I could keep going but you all reminded me why i am doing this and to not give up. I want to grow old with all of you.

Moments of Weakness

This week has been tough. No way to sugar coat or spin it in a positive way. I hit a new low.

So after trying twice to get chemo and not being allowed due to low blood counts, I managed to get it done Monday. But I think the emotional and physical toll of preparing myself day after day to do it took that much more out of my reserves and boy did I feel it. It was just me and the captain this week as the man and monkey were on holiday. In some ways it was good they weren´t here to witness my demise but I also think that I didn´t have the usual distraction that I have when they are here. All I could focus on was how god damn awful i felt and I felt AWFUL! This week I finally understood why people reject treatment. I remember watching cancer specials on TV and being in total shock when people rejected treatment following a relapse. How could they give up? How could they say no? It made absolutely no sense to me. But yesterday when I was on day 6 of feeling like sheer hell, I sent a text to my unofficial doctor - Dr Sunshine. It said " I don´t think i can do this again. I have nothing left." She literally phoned me within 30 seconds of my sending the text and I  couldn´t even get words out as I was crying. Being able to have a cancer specialist on call like this who also gets me is invaluable and it helped talk me back from the ledge yesterday. Because I didnt want to go through this again and even though i have only one left, I can´t imagine being able to get through even "only one" right now. I have a new perspective on "quality of life" and the importance of it. But I am pleased to report that after our conversation, I felt slightly better and she reminded me why I was doing this and that right now everything feels so very dark but that there is light. Somewhere down this deep hole, it is there - I promise she says.

Today I have woken feeling better then yesterday. I managed to put on jeans today instead of track pants which I take as a huge sign that things are getting better. I am trying to look ahead and know that with every day, I will feel better. I really can´t think about the next round or what comes after that. It just isn´t helpful. I think things go minute by minute, hour by hour and day by day in this marathon. My focus now is to recover from the last round and nothing else. I think in some ways my body and mind protects me by forgetting how bad each one has been. The lines blur between what was worse and why. Call it selective memory or call is survival.

So I will enjoy having my family back with me and the welcome distractions it brings. I will focus on tomorrow being better then today. That is all I can do...take it one step at a time.

But cancer sucks. I hate it.

OBB

No Chemo for You

"A waiting person is a patient person. The word patience means the willingness to stay where we are and live the situation out to the full in the belief that something hidden there will manifest itself to us." Henri J.M. Nouwen

Well I am on what should be day 4 of round 3 but instead I am sitting here in front of my computer pondering life. I have been lucky I guess in some ways - most of my treatments have gone off without a hitch and maybe because of that I didn´t really think anything would get in the way this time either. I went through the motions Thursday morning preparing myself and everyone else for the day and week ahead. The stress and anxiety that arise from this experience can be tough to manage but I am used to it and just soldier on. My mother joined us this time for round 3 and when we arrived at the hospital in the pouring rain, I knew it was game time. After putting my port in and taking the necessary blood samples, we waited. We waited and waited in the patient lounge which to be totally honest is so utterly depressing. There are many people there who are very sick and many of them (if not most) have more then a few decades on me. They smile at me and probably wonder why I am here and what is wrong with me. Or maybe they don´t and it is just my own self consciousness making assumptions. We met the doctor who I hadn´t met before but he definitely knew me. He said that he had heard about me and had wanted to see me in person. When I asked why, he said "We all take a special interest in our younger patients and you also have a very unique patient history." We went through my list of issues that have arisen since the last treatment and he delved into my mental status. He asked me a question that I thought was kind of strange. "Do you want to continue with the treatment", he asked. Well of course I wish I didn´t have to be here and there are a million other things I want to be doing but I most definitely would never give up. No matter how hard and horrid it is, I want to be here and be given the best chance possible to one day be healthy again. "No - most definitely not opting out doctor. It isn´t even a choice for me," I responded. He seemed convinced. An hour or so later, he came to get me again and took me into an empty room. It was then that he informed me that I would not be getting any chemo today. I was shocked and surprised. The funny thing about white blood cells is that you can´t feel them if they are low or high nor can you do anything to bring the numbers back up. Time is the only healer. I felt slightly defeated as I take pride in my blood values and have a little internal competition with myself to better my numbers every time. Looks like the chemo won this round. Even with the bone marrow booster shot, I had dipped below the sacred 1.0. Chemo was too dangerous for me to do. So we picked up our things and headed home slightly defeated - tails between our legs.

The next day we went through the same motions again and trekked back to the hospital. Is this getting boring yet? Same procedure again. Longer wait. Mental status questionable. After 5 hours, we find out that my white counts are even lower then yesterday and my potassium levels have dropped too. I had been having heart issues the last week which they think could be related to this. So another prescription and we are off home for the weekend. Hello sushi time! I was partly relieved but also frustrated as I just wanted to get this bugger over with. Instead everything will be that much longer and waiting just makes it all feel worse. What was additionally frustrating was that all of this had been planned to a t with my mother´s arrival and my husband and daughter´s departure to Turkey today (sunday). Originally we had bought this holiday in January and it was meant to be our family summer holiday. However when life threw us one giant curveball, I had to bow out but I still wanted them to be able to have some fun. But now my husband was leaving and we hadn´t been able to check this off our cancer to do list. And to add additional fuel to the fire, I got a phonecall at 10pm on Friday evening just as I was ready to head to bed. It was the Cancer Centre and they doctor needed to speak to me (okay so who would not go crazy balls over that?). Additional blood results were back, something else was low and they needed me to come in first thing in the morning. I freaked out of course. Apparently having low values in these two areas can cause some heart issues of which I had been having. The doctor told me if my problems got worse in the night to call them. I told her my problems were worse right now as a result of what she just told me and I was terrified. This is serious stuff people and chemo can cause serious problems. I went into total panic mode and took a valium to try and sleep. I just don´t want anything else to go wrong and I just want to finish this. But my body appears to have other plans. So for the third straight morning, I set my alarm for 6:15 and we headed back to the hospital again. I hate that place! Thankfully things were much faster this time and within 2 hours, we were out with a new prescription in hand. To be honest, when i got home I collapsed into a deep sleep - utterly exhausted by the drama of it all.

So this morning I drove my husband and monkey to the airport and it was so hard not to feel sad. Like I was meant to be there with them but instead cancer ruined everything and I was stuck here waiting for my chemo number to be called. If I were just here chilling out, it would be different. Chemo just sucks full stop people especially when compared to an all inclusive holiday in the sun. But I want them to have an amazing time and get away from all of this crap. And perhaps recovering with just myself to worry about will be better for me and I have my mom here to make me soup and just be with me so I will be okay. Things could be worse right?

I will enjoy what remains of the day and then get myself ready to do it all again tomorrow. I don´t know what the day will bring - poison or not. I will accept what will be. I will do what is required because there is nothing else to do. Patience is most definitely a virtue I need.

Love,

OBB