When to say when

When I was a kid, every time I came down or in (swim practice) for breakfast, my father had everything laid out and neatly organised. Orange juice, various vitamins, oatmeal and a cup of tea. He took good care of us and it was so nice to be so well looked after each and every day. I can still imagine all those different coloured pills sitting in rows by my glass. Oh the comfort gained from routine. When I would take ownership of my bowl, he would come over with the milk and start pouring - “Say when Katie” he would say. I would wait and wager the best guess as to when the most optimal amount of milk was in the bowl. Sometimes I would call it too soon or other times, I would end up with a whole lot of oats swimming in a overflown bowl of milk. At that time, the consequences of not knowing the limits were minimal. But what about when you don’t know when to say when about serious stuff? What are the consequences then?

Just to interlude briefly here amongst all the big out there thoughts - I know I have been gone a long time from this blog. I am sorry for that. It has been a mixture of getting swallowed up by daily life, struggling with a lack of energy and creativity and just kind of drifting along my life without really being an active participant in it. When I am overwhelmed, I never have the mental clarity to write. There is never a free moment to come up with an idea. Instead I numb my brain and thoughts with constant distractions. I noticed it even before my husband brought it up a few weeks ago. He mentioned that I seemed to constantly be watching or reading something on a screen all the time - when washing dishes, brushing my teeth, cutting vegetables. Like I was afraid of what would happen if I was just left alone with my thoughts. It scared me to be honest - this new tendency to envelope myself in this white noise. A kind of suspended state of living.

Alot has happened since I last wrote. Unfortunately I can’t share everything on here but I can just say that I have taken a knock lately and it has hurt. It has made me angry and bitter. Like I am paying off this infinite debt to some gruesome monster lurking under the stairs that never seems to leave. It just keeps taking pieces of me, one by one, and giving me nothing back in return -no guarantees, nothing but uncertainty. It is incredibly difficult to not want to lash out at the people closest to you and feel as if no one in this huge expansive world gets it. There is really nothing worse than feeling alone when there are good people all around you. Like my doctor said recently - I really don’t know what to say. This is uncharted territory.” Yes you can say that again. I feel like I am in this purgatory state that doesn’t seem to have many members. I don’t fit on either side and it incredibly isolating.

So back to this whole milk metaphor. Knowing your limits is a skill that not many have. I know I don’t and this is precisely what has gotten me into this kind of hole. You have all read over the last 12 months about my struggles to adjust to normal life and how I have pushed myself way too hard in an effort to make up for all this lost time. I can tell myself so easily that no one can sprint a marathon yet I ridiculously set out to do just that. And now I have reached mile 28 and everything has come crashing down. For months and months, my palliative doctor has told me i need to find some time to rest and take a break. I think this conversation started somewhere last spring and I only managed to find some time at Christmas time. I kept telling her that I just had a few more important things to get done and that it was impossible to take a break now. When I reflect back on this, I am shocked that I went against medical advice.When did I become that person? But I thought i knew best and I was so damn terrified of what would happen if I admitted I couldn’t maintain this pace anymore.Being found out felt far worse than hitting a wall.  I think this is a great example of the unique set of challenges that a young person accompanies when facing serious illness. You are always racing to catch up but playing by a completely different set of rules and limitations. There is so much pressure to build a life, a career, a family during yours 30s and I have been benched!  I explained  this to one person recently like this - my mind, my dreams, my aspirations haven’t changed after these past four years. I am still the same person who wants to be successful and happy but my body sadly is not. This contradictory state presents such a challenge to me because my mind believes i can still do it all but my body continues to fail me. It makes me so incredibly frustrated and upset because I just want nothing more than to do what I want to do. But I can’t and I only recently realised and openly admitted it. Like an alcoholic who comes to the breaking point of admission - I had to admit to my employer that I have been hiding all my sufferings and struggles and that I am steps away from a collapse. Do you know how hard that was for me? And it wasn’t even me who opened up this dialogue. I was faced with it and had to admit defeat.That  I cannot do this but for some reason along this fucked up cancer road, I lost the way and stopped knowing when to say WHEN. And now everything seems out of my control and I must now take that dreaded step back. I will be reducing my workload for the next few months because I have to and because deep down, I know it is the right thing to do. I hate having to give in to my body’s limitations and that I can’t carry on this marathon but there is no other way now. After surviving through two rounds of cancer, I guess I should want more for myself. Instead of waking every morning feeling completely awful, putting on a happy face even though I hurt, pushing through a very intense working day, giving the last few drops of energy to my daughter and then leaving my husband with the worst bits. It isn’t a great life really. I haven’t had the energy to do the happy things that enrich my life - yoga, writing, laughing, being with people I love and just being real. I really don’t laugh enough anymore.  I should be trying to live my life to the absolute fullest but for some reason I went the other way. I tried to ignore my limitations. I tried to pretend everything was fine. I tried to push through the exhaustion barrier every day. And in the end, it was me who lost the most.

So as this new year rolls on, it is kind of like a new awakening for me too. I am accepting my situation right now and the body I am working with. I can’t do everything that I want to do but it doesnt mean that I wont make it to the finish line. It just might involev a few more water breaks and a slower steady pace. Being honest with yourself is never easy, so reluctantly I say - when.

The Phoenix (OBB)

Game Day

The time that elapses coming up to a big scan is always "dead time" for me. Like a wave rushing to shore that gets slower and slower until it finally crashes in a Big Bang. I am in the slow mode right now and am finding it hard to navigate this limbo until the crash where all things become known. Things have been going really well for me lately and I have finally become excited for the future again without fearing it as much. I have managed to get my crap together for the third time and it feels good. But now as this day gets closer and closer, I felt like time has started to stand still and will remain so until we got through this hump. It is like pre scan, during scan and post scan time periods and right now I feel this genuine reluctance to let myself get really happy about future plans until I know things are going to be okay. I tell people all the time that by thinking this way it in no way means that I am thinking negatively - I am just being prepared for all possible outcomes. It is safer that way at least for me especially considering my track record. I never want to be caught out ever again by that bitch called cancer.

I have found the weekend exhausting and emotional. And my level of frustration over some physical issues is making me mad. I wanted to scream and cry all at the same time last night because of this damn chest pain that has picked up momentum in the last few weeks. I am just so sick of being in pain and of course my mind plays out a dozen different scenarios surrounding its origins. Any change in anything is utterly terrifying. In addition my stomach has been awful and I just feel sick pretty much after every time I eat. Being chronically bogged down by these chronic ailments all the time when I should be in pretty good shape is demoralizing and I cant exactly talk about it all the time because it is boring. But just because it is boring and constant doesn't make it disappear for me. I live with these things every day and my patience is wearing thin. I want to wake up and feel okay. It is so draining dragging this tired aching body around all day and I feel like my happy face often hides the pain. If i looked at myself most days, I would have no clue what I had been through nor what I am still dealing with. That can be the tricky bit - what truly lies beneath. Because I am the last person who wants to look how I feel and I put so much daily effort into looking like the person I hope I will one day actually feel like. However others can think that the outside matches the inside and not realise what burdens i am carrying along in my fabulous handbag.  Some days I feel like my bones are made of glass seeing as how fragile and weak they feel. I actually awake from the pain I feel when I sleep on my side and my hip presses into my mattress. What am I the bloody princess and the pea? But I keep trying and keep trudging on in the hope that all of this will one day be a bad dream I vaguely remember bits of.

For now - it is game day tomorrow and we will have to wait longer this time before we know what is the score. A whole week of wondering the what ifs until we sit down in a white sterile room trying to read the face of my oncologist again. I keep looking at my skin and pondering what is happening underneath. Are my cells behaving? Or have they commenced their own civil war again? One week is nothing and everything at the same time. So if you have a moment for me tomorrow around 10am send me some happy thoughts and here's hoping my next entry will again be nothing but good news!

Love and hugs from a slightly more fragile than normal OBB.

Chemo Brain...Uncovered

Hello again world,

Here we are nearly two weeks away from Christmas and almost 3 months since I finished treatment. Both have creeped up on me unsuspectingly and it feels like time is truly flying by. I am still working and it is good but also very challenging. I am discovering that - thank god I still have a brain that has good ideas and can perform but I am also seeing that my newly established limitations are frustrating. I know I am not the same girl I was in my 20s who loved working long hours and getting to the office first despite having been out partying til 4am on a Tuesday night! But before this latest round, I had more endurance and could just do more. Of course my priorities changed after having my monkey but I remained driven and motivated. However last week, I worked two days in a row and was so tired in the evening that my husband found me sitting upright in bed with my face firmly planted in my Ipad. I never pass out ever when I go to bed so it was a sign that the ol´body was dealing with a new set of challenges and it was struggling. I am also noticing some symptoms that can be classified as "chemo brain" - a condition that has been debated alot in the cancer world. Some people (doctors included) don´t agree that it actually exists and that it is more psychosomatic then actually a physical condition caused by the chemicals. You know us cancer peeps - anything to milk the sympathy card longer! (just kidding). But in all seriousness - I am feeling more and more of these so-called afflictions.

The Mayo Clinic defines chemo brain as:
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

Let´s see...

I used to be a supernova in the morning who loved to get up early to ensure I had time for sun salutations, my multistep hair straightening process and getting my child looking "picture perfect." However these days, I am struggling with the daily grind and heavily depend on Disney Junior to buy myself enough time to cram everything in and I take more then double the time to do even less then I did previously. And the stress and frenzied nature which I do everything does nothing for my irregular heart beats! Like a chicken with its head cut off people.

frustration.com - I have prided myself on my consistent mood and high level of patience pretty much my whole life. That is what works with my husband and I - we balance each other in terms of our moods. I rarely have changes in how I act, feel and react. I am not an emotional desert but I dont get as emotional and irritated and it definitely comes in handy when dealing with a toddler. However these days I feel myself wanting to scream over the little things and get angry when I fubble with something or can´t get the frickin´carseat sorted. It is a new feeling for me and I don´t like one bit.

Brain freeze: We all have moments when we forget things - it happens to everyone. Unfortunately my frequency of forgetfulness has increased dramatically as of late. If I had a kronor for every time I said "hang on a minute, I can´t remember that name, thing, place....but it will come back to me in the next 30-45seconds" - I would be sorta rich in a coin kind of way.  Sometimes I find those missing words but other times they seem to be on their way to neverland and never come back. It makes me anxious as I don´t know if my mental sharpness and quick witted nature will ever be the same or will I forecer coast along on slow mo?

Let´s talk about Focus: Okay I have never been someone who accelerated at math or complex problem solving nor do I like to do things I find boring. Who does really? But these days my avoidance of doing difficult things that are unpleasant is even worse. I delay everything because it is just so bloody hard. And I even delay things I want to do like sending an email. returning a phone call or finishing a project. The intent is there and I feel so much guilt over not doing it but I still don´t do it.  I only have the capacity to do one thing a day really and sometimes I don´t even get through that. So no - it is not personal. :)

Fatigue:  I am not sure this actually technically fits into the "chemo brain" box as it it more of a physical affliction but I feel that my fatigue contributes greatly to the things I listed above so definitely worth a mention. Fatigue makes all of these so much worse. And boy am I dealing with fatigue levels that I have never ever known (and I was a swimmer for years who woke up at 4:45am so I know tired). I wake up exhausted and sore no matter how early I went to bed. I need to lie down and rest every afternoon or else I fall apart mid evening to the point of collapsing. Seriously - forget Sunday mass, naps have become a devout practice that cannot be missed. And when I get tired things hurt...alot. A few weeks ago, I attended my work Christmas conference and party and suffered from debilating chest pains for the next week just from a lack of sleep. Honestly where did the jagerbomb girl go that we all know and loved? Oh yes that is right - she got cancer! And by the time I have done everything i need to do in the evening, I hobble around like an old woman with aching joints from the temporary arthritis chemo gave me. It is hard not to get pissed off about it all and tell the silver lining to fuck off! I want my old self back stat Roger!

So following the latest round in the ring with the C- monster,  I am now a firm believer in the existence of "chemo brain" and all the associated issues that come with it. I feel for all of those who have experienced it and for those who are still wading the deep waters of it. Doctors still don´t know very much about it and research has only just dipped its toes in the water regarding it. I hope we find out more and discover new ways to treat it and more importantly properly recognise it. For those of who have been through it, what are your experiences?

Hope everyone is enjoying the holiday season. Someone please have an eggnog for me!

OBB xxx

Requesting Normal

It has been nearly a month since my words graced these pages and I don´t quite know what has happened. Life of course got in the way again but I also just haven´t been able to write. Nothing came to me, no inspiration, no clever ideas or even dramatic events to recount. I have told you all many times before that i can never just start writing without some kind of idea or thought to work from - the entries never end up being published as they just never quite feel right. But today i am pushing through the wall to try and get something out there so you all know how things are going. I most definitely havent been sitting at home for the last four weeks twiddling my thumbs - quite the opposite really.

So against doctors advice, I went back to work a few weeks ago. I know it sounds crazy especially to people who have had cancer and understand the toll this disease and subsequent treatment takes on you. I do get irritated when people tell me that going back to work is a good thing and that why I shouldnt I do it - it can´t be that difficult. Rule one of cancer - Don´t talk about things you know nothing about! Trying to get back to a normal existense after cancer, once, is tough, but twice is hell and I have definitely underestimated my own self this time. It was important to me to start my life again hence wanting to work again and I knew my body and mind were far from ready but then I felt that I probably would never be ready so I needed to just leap. There is also this inate restlessness and frustration within me and an obsessive desire to get things going again. My life has been on stop start mode for years now and I feel like I can´t wait around anymore. None of this is what I planned for myself and there are so many things I wish were different but can´t change. I especially struggle with my career which was always incredibly important to me. It has been stagnant and on hold for four years now at a time when I should be at my prime. It is such a hard pill to swallow as I watch everyone sprint past me while I keep getting pushed further back. And what I realised after my first day back is that I may never be the same again. This latest round of treatment completely annihilated me and things I took for granted before are challenging. I get frustrated over minute things, I struggle with multitasking and completing tasks under time constraints, I have to lie down and sleep every afternoon religiously or I literally collapse from exhaustion in the evening and I worry about everything. I also feel like things are different for me at work - now everyone seems to know about me. I have lost my anonymity - my sense of being normal. The reactions differ dramatically from person to person - some tear up when they talk to me and hear about my struggles. They are often people who have young kids too, mothers, or people who have experienced cancer through a loved one. Then they are the others who avoid me in the lunchroom or the hallway - people I used to share a joke with and chat with in passing. It is hard to see them knowingly run the other way but I also know it is up to me how I allow people to see and define me. I know I scare them because of what I represent - someone who shouldn´t have had this happen to her.  If I want to be the cancer girl then so be it but if I want to someone else I also can - it is up to me. But sometimes it is so hard to play the normal card because it often involves pretending that everything is okay when it isn´t. And god do I feel so much self doubt and vulnerability. I question my ability to do a good job, to handle stress, to speak in another language, to be valued for the work I do and to not be seen as a burden to anyone especially my employer. Right now I feel like an albatross around their neck - I can´t give what I want to and it feels like such a long way back up this mountain that I am standing in front of. I wish every single day that i could wake up tomorrow and be normal again - no  morphine patch permanently fixed on my arm, no handfull of pills I swallow every evening, no flat chest covered in scars that make me feel like less of a woman, no feelings of such exhaustion that I cant take another step and no fear of the future and what other struggles lie ahead. I hate to sound like such a depressed Debbie here (I hate whingers!) but this is exactly how I feel. I hope things get easier - everyone forgets over time including myself and I hope, like my scars, all of these things will fade until they eventually disappear forever. As I always say - we can always hope.

Aside from my new venture back into the working world, I am still struggling with heart issues and visited the cardio doc last week. Several tests later, he proclaimed there would be no fast solutions to my problems and that this was most likely caused by my misshap with the Port incident of 2013. The heart is wired electronically in such an intricate way that any little scarring (in my case caused by a little wire that fell into the heart) will cause problems. None of it is life threatening but boy is it frickin´annoying and given the fact I have been seriously ill twice and my father and grandmother suddenly died from heart problems, I cannot just stay calm when my heart is acting wonky. It just feels like more bad luck on top of a whole mountain full of it! We will do more tests in a few weeks to determine the extent of it and act accordingly. As you can imagine - I have been struggling with anger issues as of late. And the clock is ticking on the PET which is now just a little over a month away. I feel like the last few months post treatment have been anything but restful with all the crap that has happened.

"Dear God, make me a bird. So I could fly far. Far far away from here."

Perhaps somewhere preferably with a beach, 24 hour on call massage therapist and unlimited amounts of jelly beans. :)

Love,

OBB

Girl Interrupted

Hi Everyone,

This is a quick check in to let you all know that I have made it home safe and sound. Nothing too profound to say but a few thoughts and pics to show you how I am feeling and where exactly I was.

Despite what I first thought upon arriving at rehab (always makes me laugh when I say that) - I did come away from the experience a richer and better person. After reading my last post, I think it was evident that I had learnt some valuable lessons and I pleased to report that my education continued once I got home. It was so wonderful to see my husband and daughter again and they were definitely happy to see me too. Apparently I have a fairly key essential role and presence in this house and its absence was duly noted. :) What can I say - everyone loves to be missed. But what I also discovered was that after only a few short hours, I felt stressed again and the pace of life slightly overwhelming. I truly underestimated how much more energy and work goes into looking after others rather then just yourself. After a day or two, I felt drained and exhausted again and the healthy glow in my face had faded slightly. Now don't get me wrong people - I love my family and there isn't anywhere else I would rather be but it made me think...alot. We so easily let day to day life take too much out of us and suddenly we stop really living. We are simply surviving. I know many of my friends do the same with all the stresses and pressures from work, family and life. It is nearly impossible not to let it take you down without even being aware of it. After the wool has been pulled from my eyes, I personally just don't want to live that way but it takes alot of work to stop the cycle. But this experience of being away has started me on the right path - I know what I want now and wasn't aware of it at all until now. Trying to be the perfect mother, the best wife, the go to friend and the hardest working employee is a recipe for self destruction yet many of us try to do it all and lose parts of ourselves in the process. Something always suffers. I know I can't do it all (and throw in a fight for your life) and suddenly you are drowning. So I will try to not do it all but prioritise what is really important to me right now and act accordingly. I need to capitalise on this newfound perspective and not just let old patterns and routines fall back into place. My time to change is now.

Here are some pictures of the rehab center, its surroundings and some selfies (slang for pictures of yourself). I definitely think rehab did me good.

Hugs and happy weekend!

OBB

10 Things I Learn in Rehab

  It is one week since I arrived here and guess what? I am still here. A definite feat in itself for me as I was sure I would have been gone by the weekend. As you can see from my last entry - things have been decidedly tricky and challenging for me here. If I am being honest, I have to say that things have got easier for me here and I have managed to take some pretty positive things away from this experience. I will not be sticking it out for the whole time though because I feel this journey is coming to a natural close for me and it is time to go home. A week of rest and reflection has sufficed and I feel that my time will now be best spent home with my family now. As I said earlier things didn´t quite go according to plan and the absence of people in similar situations made it especially hard for me. I am an extrovert who likes to talk and share my feelings and experiences (I think this blog is fairly self explanatory on that front) so being on my own most of the time to process and reflect over recent my life´s events has been difficult. I am proud of the fact that I got to this point and that I did some soul searching along the way. What have I discovered after a week in the mountains away from normal life? Check out my top 10 list.

1) I want to actually set the wheels in motion to turn this blog into a book. Many of you have suggested this and it has always been in the back of my mind. It wont be easy and will require discipline and time but it is a dream I want to realise. You can´t put ure dreams off forever.

2)  I am afraid. Time is my most precious commodity and sometimes it holds me prisoner due to my fear over the uncertainty of the future. I can´t realistically be there for every moment and that is okay. It just ends up taking its toll on me physically. But what I can do is be completely present for all those times I am there - no screens, no texts, no distractions.

3) I fear death. Having cancer once made me terrified of death. Having cancer twice has brought me closer to the reality of it. But just because I fear it, it doesnt mean it will happen. No one has actually told me when, where and how I will die so I can´t live like a dead woman walking. A pain in my chest doesnt mean I will collapse and die like my father did. A bad headache doesn´t mean that I have a brain tumour and will have a stroke. Every little pain doesn´t mean cancer.

4) I only have one body and I need to take care of it. I have to start prioristing myself and not trying to do everything. As hard and boring as it can be, rest is the most important thing I can do for myself right now.

5) I can´t put other people on hold especially the ones I love. I have to make time for them and them for me. You can´t always rely on there being a tomorrow.

6) Empathy is so key to people feeling listened to and cared for. It is something everyone should practice.

7) I am no good at being alone. I thought I was but being at home with the usual distractions is not really being alone. But when your strip it all away and put it all behind you - so it is just yourself - that is being alone and it can be terrifying. There is nowhere to hide. On the flipside, I have been able to see what amazing people I have in my life and that because of this I rarely ever have to feel alone. You know who you are - you girls are just amazing and define kindness and generosity and for this I thank you.

8) My biggest fears I have, as a result of my illness, are leaving my daughter with no mother to grow up with, my husband with no wife to remind him how special he is and my mother having to bury her baby. I don´t want this for any of them yet I have absolutely no control over what will happen. I can just hope that neither of them will know grief this like this ever.

9) I use humour and sarcasm to hide my true feelings. It is a deflection technique that allows me to lighten the mood and not really face the tough stuff. It also makes everything easier for those around me to cope with the seriousness of my illness. But it alters reality sometimes and can be tiring to hide behind a mask. Being truthful and honest is okay sometimes and you can cry and scream without judgement.

10) I am afraid of making plans. It took me so long to actually make any plans after I first got sick and there was such a reluctance on my part to commit to anything beyond next month. And when I finally did do it, it blew up in my face. Tickets and trips were cancelled and the fear of the future returned. I am back there now and feel like I can only make plans in small increments. From now til Januay 14th and then what next? I am so afraid of what comes next. I guess it all takes times and every time I make it past one milestone,  I will be able to see farther down the road. Look further into the future, my future.

So as you can see it has been far from all bad here and as predicted, I have managed to bring something positive out of a tough experience. I also met some wonderful people whom I will stay in touch with. Life can surprise you sometimes...

Thanks for all the love and support.

OBB xxx

After the Rain...A Rainbow Appears

I wanted to give you all an update on things in my life. Another week has gone by and thankfully there havent been any medical emergencies. Now that's a first! A boring week is just what we needed in our house. I have been so tired lately, feeling anxious and having such terrible pain throughout my body. I am really feeling the chemo‘s effect on my joints even down to my fingers - everything feels like it has been through the wars and it is frustrating. Not to mention the fact that my fingers go white and numb when I walk outside for literally a minute or even while eating a cold apple. I will need arctic down mittens before Halloween even arrives! Oh happy fun chemo side effects.

I think anger has been the theme of the week. It was almost like this whole nightmare with my sick leave coverage acted as a catalyst for unleashing all my anger over everything that has happened. I felt like all of my problems stemmed back to one thing - CANCER! I think I have managed to stay fairly calm throughout the last few years and accepted much of what was thrown my way. Anger was not something I felt much of but lately it is all I feel. I am angry at the time I feel has taken from me. I am angry at all the side effects I am living with that may or may not ever go away. I am angry that i cannot just get up tomorrow morning and go to work like most people. I am angry that even though i have been to hell and back, I have no guarantees over what the future holds for me. It all just seems to unfair. You know I think a lot of people especially young people take for granted the fact that they are able to work. Yes sometimes it can suck but trust me life would be boring without it.  I would give so much to snap my fingers and be able bodied again. With so many issues happening with my body at present, sometimes I get scared that I wont ever be well enough or strong enough to function the way I want to. So yes you can see that things have been challenging as of late.

However my husband and I got such a shock this week that finally allowed us to catch a break.Things were looking so bleak for us in terms of this battle over my sick pay and my husband had been working tirelessly on it for weeks. I was fairly useless in the situation as all I would do is start to cry. We were expecting a defeat because the last few years have been one bad luck scenario after another. And with so many defeats, it can become very difficult to change your mindset and think things will be different. But things are different. They have reversed their ruling and everything is going to be okay! We were both relieved when we found out but also felt oddly deflated by the surprise decision. I think when you expect and prepare for the worst but then get the opposite, there is a bit of an anti-climax reaction. We both thought we would have to keep fighting but suddenly the clouds have cleared and the sun is shining again. I am happy though and I feel like now I can focus on getting better and working my way back slowly the way it needed to happen. I also will be able to focus on my rehabilitation and will be leaving in a week and half to spend 2 weeks at a Cancer Rehabiliation Centre in another part of Norway.The program is individualised and focuses on getting you physically and mentally stronger after treatment. I knew this program was exactly what my body needed but I was so afraid of being away from my family for so long.The actual program is 3 weeks but we managed to get them to allow me to stay for 2. Being away from my little monkey is so tough for me especially when I feel that my future is still so uncertain. You just want to squeeze everything out of every moment and not miss a thing. And as a mother you of course think that both your child and husband will completely fall apart without you there acting as the glue! But of course they will survive and are more then capable of being away from you. It is about time I focus on me - no interruptions, no distractions, no nothing. Because as much as I try to rest at home, it never actually happens. I feel too guilty and just dont want to spend my days in bed. This will be good for me and will make me a better person who will be better equipped to cope with life again.

The road ahead is unknown and we will need all the strength we can to get through the next challenges that come our way. Like that scan that looms in the background - I cant escape the fear of what it represents and how much weight it bears on my life, on my future. Like I told Dr Sunshine yesterday - I just can't do cancer a third time...I just can't.

I wanted to thank so many of you that reached out to us when things were looking bleak over the last few weeks.So many of you have such generous hearts and kind souls and were ready to help in any way you could. It reminds me of all the good in this world and that it isn't all doom and gloom. The love that has surrounded us has been amazing and I want to thank you for showing us what good people there are in our lives. And thank you to my husband for fighting so hard for me. Finally a victory for Team NorCan. I love you.

Love,
OBB

PS We are fast approaching 100,000 visits to this page. Very exciting milestone for me. Thank you for all the support and keep reading.

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 naïve 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? :)

OBB

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

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.

Hair Musings

Just wanted to post two pics I took from yesterday. I feel like getting your haircut short isn't the biggest deal in the world nor should I get a medal for it - especially considering I have already been bald. However it is the reasons behind it that make it different. The fact it wasn't my choice. Perhaps you see some of that in the first pre cut pic. Hair musings....

And the end result! Very cancer chic I think. Now to see what those little strands decide to do...

A lighter OBB xxx

The Black hole

It has again taken me much longer then intended between entries. So here I am over a week past my second trip to the C-Spa and starting to rejoin the land of the living again. How did it all go? Well it was different then the first. It all started out abit silly when we shipped our daughter off Thursday to her grandparents, I took the anti nausea pills and we headed to the hospital ready for the second torture session. The mental preparation required for these types of events is massive so you can imagine my upset when they told us that I was not actually getting any chemo today and it was only tests and dr talks. However this anti climax was quickly flipped into something good when we decided to head out for sushi and enjoy an evening at home without kids.

Knowing more about what was coming this time removed some of the anxiety over the what ifs but I was still so afraid of things going wrong. I worry that my port isn´t working properly and the toxic poison will spread through my body. I worry that I will react to some medication and start having anaphalactic fits. I worry about what other side effects could show up (tinnitis is one of those terrors). Such a bloody catastrophiser I am! But I am happy to report that everything went according to plan. My bloodwork was actually really good and everything seems to be going as well as can be expected. I actually felt pretty good the first two days and thought maybe my luck had changed. But the reality fairy unfortunately showed up Monday and things started to get really tough. Not only was the physical toll of this so awful, the emotional toll started to weigh down heavily on me. I am a chemo veteran and have been through this before but this seems so much harder then the last time. I remember feeling bad for about 3 or 4 days and then bouncing back but this time...It never ever feels like I get back to much of anything. There is of course improvement and today I am testament to that in the things I can do today that I couldn´t do a few days ago. But I had a breakdown day. Wednesday. The weather was crap. I had a headache like I do most days during treatment. There was a major nausea party going on in the tummy and my body just had nothing. The smallest thing took any energy I had and I spent the entire day on the couch drifting in and out of sleep. This feeling of just having nothing is new to me and it feels downright crap. I am a young woman and I should not be feeling like this. I have always had the little reserve of energy to get me through. Not this time. And to make matters worse, the hair has started to fall out. Everything came crashing down on me and it was just too much. I was on my own which doesnt help and I was just was so angry. This is a struggle like none I have experienced before and it feels like every treatment digs me deeper and deeper into this hole. So as you can see it was a tough week for OBB.

But there is always light in the darkest of moments and it came to me in a variety of forms.

I received a hand knit quilt in the post this week, organised by my fellow cancer blogger and all around super hero, Anniken Rokseth veientilbakeigjen.blog.  Every patch on it was knit by someone different across Norway and it was put together for the sole purpose of providing comfort to a cancer patient. In this case it was me which was amazing but also kind of different for me. I have never been on the receiving end of charity before. I am happy to report that I used it for every single one of my naps this week (and there were many). For more info on this project check out Ull og om tanke

I came home from the acupuncturist on Thursday to a beautiful bouquet of flowers that brightened my day and my living room.

My daughter got sent a huge box full of the most wonderful Princess and Fairy inspired outfits to suitably distract her for a few days!

When I wrote a depressing status update on Facebook at the height of my black hole of despair moment, my army rose to the challenge and went into battle mode. I am not going to lie - I needed some sympathy and boy did I get it. I received messages from around the world at once. One friend told me she was going to clean my house and bring groceries next week, another brought soups and sauces to stock my freezer and another organised a food surprise to lighten the load on my husband. Because let´s face it - if he doesn´t cook, we starve in this house. So many people were happy to drop everything and be here for me in whatever way they could. Many of you have sent amazing care packages to me that make a bad day frankly amazing. I just find it amazing how you can become so isolated by illness but the world of blogging and facebook allows you to still feel part of something and in the company of others. And I am amazed by how many awesome friends I have in this world. You guys are really tops and I am so fortunate to have you on my team. I continue to be blown away on a daily basis by the kindness and generosity of you all.You spoil me, my daughter and my husband!

I am off shortly to the hairdresser and will be cutting the hair short. No buzz cut yet but I need to take some of the power back and stop watching these strands falls all over the place. What will be will be...

Love to you all! Thank you for helping me back from the dark side. xxx

The Day Mastectomies Became Hip

Hi Everyone,

I hadn´t intended to write a blog entry as I was busy being firmly camped on the island of self misery this week. After a week of sheer hell last week, I unfortunately caught a nasty cold from my little monkey and am busy blowing my nose every minute and feeling downright lousy. It makes me so angry as this is the one week that I am supposed to feel okay. Next week it will already be time for the next treatment and I am terrified. So you can understand my frustration at having my "free week" robbed from me due to my non existent immune system. Looks like the freaky outbreak-esque masks didn´t quite work. :(

But onto the main point behind this blog. I received many messages about Angelina Jolie´s news today and I am certain she will be heavily discussed in the breast cancer blogging world. The perfect and virtuous Angelina is actually in fact BRCA 1 positive which means like myself, she carries a lifetime risk of 85% of developing breast cancer and a 50-65% chance of developing ovarian cancer. When the odds are stacked so heavily in the cancer corner, her decision seems like a no brainer. (Just so you all know - less then 5% of all breast cancer diagnoses are BRCA related. There are two BRCA genes - 1 and 2 that basically propel your body to want to grown tumours rather then supress them. Check it on wikipedia for more info). But of course it never is as easy as it seems. Nothing is ever straight forward or sense-making in the world of cancer. One thing that did irk me about the article is that she discusses the extensive genetic testing, nipple analysis, and state of the art reconstruction she underwent and how she was able to continue working etc...The reality is that Angelina, unlike many of us, has millions of dollars at her dispense, a team of nannies and staff and has access to the absolute best in medical care. For the rest of us it is not so simple. Living in a country like Norway and its amazing health care system, I still struggled through my own experiences. Just last year, I decided against reconstruction for my one healthy breast when I removed for preventative reasons. Why? After a year of treatment and procedures, my husband and I could not imagine having to deal with a long recovery again and the stresses of looking after our daughter through it all.  And i thought about what I would do with one sorta normal looking boob and nothing on the other side. I actually thought being symmetrically flat would be easier to work with then the uni-boob look and it kind of is. But the trauma of waking up to nothing there versus reconstructed breasts is like night and day. I am definitely not trivialising the women who are able to reconstruct immediately because none of this is easy - it all sucks. But it is a different experience to have nothing there. When Angelina talked about how it didn´t change how she felt as a woman, I just can´t echo that sentiment. It has dramatically altered who I am as a woman and it has also taken a huge part of what makes me one. I am not comfortable with that part of my body anymore and it serves as a very real and very visual reminder of my experiences. Something will always be missing...

I am hopeful though that someone as huge as Angelina coming out with her own story will help raise more money for BRCA research and highlight this cause. I still find the fact that the best solution we have available today for women suffering from this genetic mutation is the removal of body parts. It just seems so barbaric to me. There has to be more out there for us...for our children.

I also have realised that the experience of finding out you have the gene before you develop cancer is an entirely different experience to mine. I cannot begin to imagine how those people feel discovering they have these time bombs and no idea when they will detonate. I lived in ignorance of my status until I already got cancer so my decisions were quick and there werent really any decisions to make. It had already been made for me. I had to do everything in my power to ensure i didnt suffer through cancer again because i had lived it already. I knew how unbelievably horrific it all was. But when you aren't facing your enemy head on and it is rather a threat, it must feel so different...maybe more conflicting? You are having to remove perfectly healthy parts because you might get cancer. So very different to actually having cancer. So I feel for my BRCA sisters and the difficult decisions they must make. But if a pink sister can give any advice (and I have cancer so you have to listen to me!) - If I could prevent just one woman from going through what I have lived for the past two years, god that would make me feel so good and maybe make this blog worthwhile. I often think about how things would have been different if I had known about this threat before it took over my body. Would I have been able to save myself from this? What would I have thought about it all and how quickly would I have done something about it? Would I have hidden away from the truth or faced it head on? All I know now is that I would give anything to be sitting here with two breasts filled with silicone that maybe looked alittle different then be faced with what I am living through today.

Love to you all!

OBB

PS: I am still waiting to see what happens on the hair front. All bets are on - will it stay or go? The truth will be revealed soon.

The Phoenix Rises...

I had the strangest and most real sensation happen in my hospital room last Friday night. I was in and out of a very heavy deep sleep after having been given my first toxic dose at the C-Spa. As the poison reached from head to toe and thumb to pinkie, I lay there trying to make sense of the port in my chest. Of the pain in my shoulder. Of the fear and anxiety over when the sickness would hit. I hated every moment of it and I was so scared. However in the stillness and darkness of my sterile room that stank of cancer and sterile products, I felt some peace. I can´t quite describe it in ways that make sense to everyone but they made sense to me. I felt three soft caresses on the top of my head and three gentle kisses on the same spot. In that moment there was no fear around me and I knew in my heart who it was. Who would have been there by my bedside if he could of to protect me? Who was there most of my life to shield me from pain and suffering? It was my daddy of course. Maybe it was the drugs or maybe it was him, just letting me know how in his own gentle manner that he was there.

It is six days since I had chemo and it is only today that I can bring myself to write anything. It was mostly due to the horrific state of health I was in but also the fact that I just couldnt write the words nor relive the experience until today. It was honestly all too nauseating to do before especially when I was feeling so frickin awful. No OBB didnt catch a break on this round either! Fuck the universe! I find it hard to say whether it was worse then the last because they are both so different but both suck unfortunately and my body said NO! After 3 days in the hospital and a blood transfusion later (yes I can now add that to my list of medical procedures), I was struggling and literally didnt have any energy to function. And the nausea? Oh god I fucking hate nausea so much and nothing would rid me of it. Apparently anti emitic drugs have not advanced enough to shield poor OBB´s gentle stomach from the tsunami that hit me this past weekend. When my doctor texted me Monday asking how I was doing, I replied - "Awful - how much longer till I get some relief?" To which he replied - 3 -4 days! I just about collapsed in a heap at that moment. I just couldnt take any more of it and that seemed like an eternity to my weather worn stomach lining. But that is the thing with round 1 - it is the beginning. There is much much more to do and there isn´t anything you can do about it. Being so ill and unproductive makes me so scared because it is like a bitter and twisted taster of what could happen. What your life could become and I want no part in it. It breaks my heart into a million pieces just thinking about it really.

So how did team OBB fare? My husband was great and was there every step of the way in the hospital for all the scary moments and never flinched. Maybe once when I got the very Twilight inspired bags of blood? And my daughter coped as kids do and adapted to the changes. But today I noticed a change in her as I could finally interact and be with her today. In response, she didn´t want to leave my side and asked me to do every puzzle in her box or to come here and there with her. When I asked if she was happy that mama wasn´t so sick today, she said "Mama I am so happy you feel better" and she wrapped her little arms so tight around my neck, patting my back three times and planting kisses on my head. Feeling her so in love with her mother, with me, makes me dig deeper and want to fight that much harder. I have to do it for her. I have to wrestle all the demons that come with the C-Spa and just do it. She needs me. My husband needs me. My family. My friends. I need them too.

So I am just waiting for my appetite for Ben and Jerry´s to return before I know I am fully recovered! I will look after myself and get the antibac gel out as the immune system starts dipping now and try to put round 2 as far from my mind as I can for right now. When it comes, I will be as ready as I can be and everyone will be there with and for me - ushering me to the finish line...again.
Love,

OBB

PS: I have been in a virtual "incommunicado" mode since last week so don´t take any of my silence - emails, sms, phone, skype personally. Mom - that is you included! :) xxxx

Pre Chemo Ponderings

"So I hope I get some rest and don’t spend too much time wondering how it will be, will it hurt, how will I react, will I cry, when will the hair go…? Weaker people (physically speaking!) have been through this and come out the other side and so will I. So I will open my veins and mind to the experience and remember that I am doing all of this to safeguard my spot in this world for a very, very, very long time ahead. Bring on the poison!"

These are my exact words from the blog entry I wrote nearly 2 years ago on the eve before my first chemo. I seem very optimistic, energetic and positive. I am still all of those things but I have also evolved and grown. I know so much more and I have experienced things that the girl who wrote that in 2011, couldn´t have imagined. On my last day of freedom, I feel like the tank is empty and I have so little energy. I seriously debated running away last night as the fear and anxiety took over to levels I found hard to bare. I am so afraid and the clock is ticking faster and faster, summoning me to the C-spa for my next battle. I want to be the coward who runs and hides until the worst is over but there is really nowhere to go. I must stay here, dig deep into my arsenal and find some bloody bravery to get me through this next giant mountain. There is so much more to think about this time and the unknown terrifies me again. How will I react friday? Will I completely break down like last time? Or will shock and fear turn me into a robot? I just don´t want to be sick again. I don´t want to worry about kissing my daughter for fear of germs. I don´t want to have to take a nap every day so I can have the energy to get through a day. I don´t want to check my temperature constantly out of worry of some major infection striking. I don´t want to keep checking and pulling my hair so see if it is falling out.  And I don´t want to think about what this second round of toxins is doing to the healthy parts of my body. I guess the most important thing to think about is dressing these little toxic soldiers up in titanium suits with valarian steel words who will run rampant through my body killing any cancer cell that dare come in their way. Losing is not an option. We must be triumphant.

I am not sure what my shape will be like over the next week so I hope I will manage to keep you all updated through this first round. So many of you have been so wonderful and supportive and I so appreciate it. Even though I am often surrounded by people, in times like these, one can still on occasion feel very alone. It is moments like this when I remind myself of all of you - Team OBB who raise me up.

I have realised through being seriously ill that it can be so hard to ask for help. I am not good at it nor am I good at letting people do things for me. My husband is even worse at this. Often times when we have had visitors here to help out, we often end up hosting them because of our inability to let go. So please be tough with us and when help is offered, make sure we take it. I am getting better at it and I have also discovered that in situations like this so many people want to help you but don´t know what to offer or are afraid of intruding. I will try and get better at this as I know now more then ever we will need help to get through this. There is something so difficult about admitting you are struggling, especially for people who are young like my husband and I - it feels sometimes like defeat. But I now see that admitting this only shows how strong you really are.

Geez the day is already half way over and I am still in my bathrobe. The hours are going by so fast and with each one that passes, my fear rises. I am frustrated and annoyed at things I shouldn´t be and I keep trying to eat everything I love now. Coffee, chocolate, Mcdonalds nuggets...all of these things will most likely not be my best friends for a long time so I am savouring them now. I know I have a virtual army of strength surrounding me and sending me positive messages and endless hope - I will use these to help me cope with what lies ahead. I just wish things could have been different...I wish so much.

"Before I knew you, I thought brave was not being afraid. You´ve taught me that bravery is being terrified and doing it anyway." Laurell K. Hamilton

Love, OBB

Back from Paradise

Hello World!

I am back in the living room command center after having spent the last week in glorious sunshine! Living in a cold climate like Norway, the weather is like russian roulette - you never know what you are going to get. But in the Canary Islands every morning I woke up and pulled open the curtains, the sky was blue, the air warm and the sun creeping up behind the big rocky hills. And the freedom of just running out the door to breakfast without thinking of jackets, mittens and scarves was pure bliss. We really enjoyed ourselves as a family and I ensured I took full advantage of the unlimited buffet meals (waffles with nutella anyone?) and spa. I finally got that pedicure I had been wanting for oh...about two years for. But no matter how amazing it was, I couldn´t quite escape my dark passenger. It would pop up in a quiet moment or when someone asked me about my scar or when we were thinking of having a second child. Suddenly I was the girl with cancer who had to go home and get involved in some serious life saving activity. I was the girl who was recovering from major surgery. And I was the girl who had to chose survival over the opportunity of being a mother again. For the first time I identified myself as someone with cancer because as my scans reveal, I do still have it in my body. Before I always called myself someone who had had cancer and was just having extra treatment because I was so young. Throughout the holiday, I mostly kept my secret identity on the down low because I find some people can react very weirdly and it can also be a total buzz killer. And if anything, feeling normal and just part of the gang was good for me. So all in all the trip was a total success despite a few deep moments here and there which was inevitable. But here I am back again - days away from the start of a new battle and I am so scared. You know coming home from holiday is always a bit depressing but coming home from holiday to start chemo is just downright shit.

So the rough plan we arranged before we left was to be admitted on thursday to have my central port* put in which is a minor surgical procedure. I would then spend the night in hospital and get my first dose Friday. Apparently you don´t start to feel super awful until 24-48 hours post dose so I should be dying just in time for Sunday brunch. Eggs benedict anyone? :) I did meet with my both oncologists (seperately) before we left on holiday and there just wasnt time to report it all back on the blog so I will now. One doctor (the head honcho) informed me that i would indeed lose my hair during this treatment which sucked the wind out of my sails. I told him that he had burst my last balloon of happiness with that blow. He also told me that my preliminary scans were okay - major organs like the liver and lungs were okay. There was one spot on my neck that needed clarification from the radiologist which I still don´t know about yet. So if the neck is okay then we are still doing ok people. I am still looking at a real shot of being cured...again. What scares me (besides the actual chemo) is the fact that if this doesn´t work then things are going to be really really bad. I asked onco #2 whom I love (and also disagrees with the hair loss) about this fear of mine and she kinda confirmed it. So I have decided that this medicine has no option but to work and rid my body of cancer cells for good. I am running out of lives and body parts to remove so please chemo - kick this cancer´s ass! And be assured that i am totally going to fight like hell but part of this process is allowing yourself to feel everything and visit every scenario. I want a happy ending but I am also not naive about the cancer I have. I am fighting a very aggressive cancer that has returned - there is nothing to sugar coat what that means. In many ways I feel really helpless now and like everything is out of my control. I have done all that I can do in this battle and now I must pass my sword onto the medicine. It is this awful toxic stuff that must do its job and save me. Why couldn´t it be cake godammit!

So I will try to get myself ready for the week ahead and eat all the foods I enjoy now. Both my doctors warned me how sick I was going to feel and doctors tend to play things down so this made me increasingly anxious. This is apparently one of the worst chemos out there and given how I responded to the last one, I am expecting to feel pretty damn awful. Expect the worst and sometimes you can be pleasantly surprised when it ends up better. That will be my strategy for this next trial. I might go back and read the entry I wrote way back in may 2011 on the night before my first chemo and see how much I have changed since then. Or maybe I am still very much the same...a scared and hopeful woman that just wants to be alive and healthy and will do whatever she has to do to get there.

Love,

OBB

*: Not all of you will know what a central port is so I thought I would enlighten you abit. A central venous catheter ("central line", "CVC", "central venous line" or "central venous access catheter") is a catheter placed into a large vein in the neck (internal jugular vein), chest (subclavian vein or axillary vein) or groin (femoral vein). It is used to administer medication or fluids, obtain blood tests (specifically the "mixed venous oxygen saturation"), and directly obtain cardiovascular measurements such as the central venous pressure.

My Month in Pictures

Hi Everyone,

I thought I would make a post with some pictures that were taken in the last month to:

1) Brag about how cute my daughter is. :)

2) Give those of you who don't get to see me or my family in real life (facebook excluded) - a chance to see us.

3) To show how life can really be tough sometimes but there are always things that are worth celebrating and enjoying no matter what.

Don't forget to enjoy your moments!

 Our first date night since 2012 this past weekend!

 My little monkey in living colour.

 Love.

Being with family. Two generations affected by breast cancer.

Loving one of my prized possessions...my hair!!!

Love,

OBB

Catching a Break

Ok so I had to write an entry after discovering some frankly amaze-balls information following my last entry. For some odd reason (or perhaps I just assumed and one should never assume anything in the world of cancer) that my chemo would make me bald. I mean that is what happens generally and I have experienced it first hand so why would it be any different now? Alas I am so happy to be wrong. This is one of the few chemos that most likely wont make you lose all your hair. It is not a standard breast cancer chemo drug and most of those make you into a cue ball hence my assumption. About 1 out of every 1000 people who have this drug will lose everything but most lose some and it usually doesnt warrant wig wearing. I cannot describe the relief upon hearing this news. Suddenly I could still be me. Even though chemo will make me feel so super crap there is so much comfort in the fact I wont need to shed a layer of myself. To everyone else, especially in the eyes of my daughter, I will look the same, just alittle more battle worn. This was literally the best news I had heard in months if not years. Now my hard earned pony tail would not have to be cut!

I went back to work yesterday and it was surprisingly good for me. My brain is definitely stuffed with cotton wool but being back in a non cancer environment is refreshing. Everyone was so happy to see me but it was slightly tiring responding to the question "So are you healthy now" 30 or 40 times. How do I answer that exactly? I really dont know. I know I need treatment to give me the best chance at being healthy but beyond that I just don´t know. By the end of the day, I was exhausted with a headache and kind of over relieving it all so many times. I have decided to try and work as much as I can manage through my treatment because I think it will keep me clear, sharper and less insane. Gettting a break from being the cancer patient will be good for me. Last time I had treatment, I learnt Norwegian so why not use this time to do something productive again.

We also got the PET scan date which is next Wednesday. This is my third in 8 months so I am a total veteran of the positive emitron transmission scan. No physical activity 48 hours prior so i will be chilling out next week. And then my husband booked our holiday! Woohoo!! I am so excited. Next Friday we will get on a plane and head to the sun to do what normal families do. Spend some time together in the sun just having fun. We will go without knowing the results of the scan and I am okay with that. After everything we have gone through, all the waiting and all the stress, it just doesnt seem like that much more to bear. I can´t change anything that has happened or that is in process, I can just remain hopeful that things wont get worse. For those seven days, I will enjoy my last few moments of freedom. And when I return from this trip, it will be time to get the show on the road. I have decided to get a central port put in to have all my chemo administered through. My veins are total nightmares from all the previous abuse so this will spare me the needle anxiety and missed attempts but I of course need to get the bugger put in. More on that procedure later when I find out more about it. Isn´t cancer fun?

For now it is a time to rest...the war has not yet begun.

Hugs,

OBB