Tuesday, April 24, 2012


I just had to share a little interaction I had with my daughter this morning that melted my heart. We always have our mommy and Ida time every morning before daycare which she loves to bits. I was taking a shower and Ida was keeping a close eye sitting on her little perch by me waiting patiently for me to be done. When I got out and was drying myself off, she looked closely at my two long war wounds for a few moments. There they were – like two red rivers flowing across my chest. And without a word exchanged between the two of us she said “Mamma`s booboos” and then took a step forward and ever so lightly placed a kiss on my thigh. It was so touching it nearly made me cry. A tiny little person who is just learning how the world works already understands empathy and is clearly so full of love. I must have done something right so far because this…this is love. OBB

Monday, April 23, 2012

The Good and the Bad

I have been busy the past week trying to bridge the gap that was created by my illness. I called and emailed everyone I knew to try and find something to do. I was feeling restless, impatient and craving my independence again. I wanted a job and I wanted it now. I have never been the person who wanted to stay at home and I thrive under pressure and love challenges. I obviously overcame the biggest challenge of my life so far so now I am ready for the next chapter. But the pages remain blank...for now. I feel the fire rising in my belly again and I am compelled to make something happen. Luckily I am fortunate enough to also have an army behind me ready to offer any help they can to help me make up the 10 steps I fell back. How amazing is it to have good friends? Something else that makes my life so rich and full. So even though I have been making plans, I have also been worrying. I try so hard not to fear the unknown and so want to enjoy my 6 month hiatus from all things cancer but it often creeps back in. I was at a motivational talk this past Friday night at a hospital nearby for young people who have had cancer. My dear friend whom I met in treatment was organising it (if you understand Norwegian please check out her blog which chronicles her Herculean battle and victory against Hogkins Lymphoma - http://veientilbakeigjen.blogspot.com/ ) and asked me to come. To be honest, I was reluctant. Did I really want to spend my Friday night with cancer? Was this the best way to use my precious time? In the end my desire to see my friend pushed me to go. Funnily enough I was one of the older ones in the room which was weird seeing as I often was on the opposite end of the age scale in the world of breast cancer. There were all sorts of people with all sorts of cancer who were trying to move forward and leave their cancer experiences behind. Perhaps trying to learn how to embrace life again after being at the lowest of the low and letting our fears and worries go. It ended up being a nice evening and I managed to meet some very nice people who spoke English to me!! Phew! Something we touched on has been on my mind a lot. We talked about support groups - either in person or online and how they could be a help but also a hinderer. It seems recently that the group I am in has a string of bad luck - people have had relapses, people are suffering and others have earned their pink wings. I cannot tell you how much it terrifies me to hear of these things because it makes you wonder what makes you different from that person? I then obsess over the type of cancer they had, their initial diagnosis etc...to compare my case to theirs. If mine is worse then what does it mean for me? Such destructive things to do and think about. But all that you fear is sitting in front of you on a computer screen and it hard to look away. But at the same time these groups are full of people who pick you up when you are having a bad day, give your tips on everything and anything and some even become lifelong friends. So how do you balance the benefits with the negatives? Sometimes I think i should just cut myself off as the stark realities of cancer often prove too much for me. And let´s face it - I am a born worrier so why provide fuel for the fire? But then I remember the strength and love these people offer up so readily. The double edged sword of support groups I guess. Well that is all from me for now. In other news, I want everyone to send out positive thoughts to our Dear Captain AC who will be having her own surgery a week from today. As one can imagine, she fears the unknown, mourns her loss and just wants everything to go alright. I completely understand where she is coming from but I hope she will overcome the worst of it fast and come out of it stronger. Everything is so much scarier when we don´t know what to expect. I promise you AC - you will tackle this challenge as you have done with everything - with pure gusto and grit. Hugs, OBB

Monday, April 16, 2012

A New Chapter

"Nothing is predestined. The obstacles of your past can become the gateways that lead to new beginnings." Ralph Blum

Today is a new day for 0BB. I made my last trip to C-Town for awhile and it feels both relieving and strange at the same time. I got the all clear from the surgical biopsy which is great news and everything seems to be in order. I said my goodbyes to the people who have been a daily fixture in my life for the past 12 months and in a way I said my goodbyes to that chapter in my life. I almost felt like crying on my way home but this time they were tears of relief, tears of joy and tears I have fought to hold back. There was a giant release and the motivation and spirit I had been struggling to retrieve over the last few months was back. It was today that I had to start living as if the cancer was gone forever because really no one has told me otherwise. It will not be easy as the mind is a powerful creature and I will have years to get through before I know this beast is well and truly dormant. But little steps can be made as I rebuild my life – a new life.

Lessons Learned from My Year with Cancer

10. I look really good without hair! Who knew my head shape and bone structure was so perfect and I could rock a GI Jane look. Now I actually think I might keep it short.

9. Cancer is not a death sentence. People survive cancer everyday. It is so easy to remember the scary awful stories that are literally everywhere. I know of these especially given I have such a nasty type of cancer. I have often had people tell me about how they were so relieved they didn’t have triple negative cancer because it was so bad. Oh really – that is great because that is just what I have!! Of course I am not being naive as I know we have lost far too many to this beast but as one of my very good friends told me when she visited me “You made me feel like not every young person dies from this and that you can survive.” And for every terrifying story there are probably a hundred or more success stories. Important things to keep in mind when dancing with the Big C. And for all my TNBC sisters out there – it is not all doom and gloom. There are plenty of great survivor stories for us to focus on.

8. I have some truly amazing friends. In times of crisis you really see what the people around you are made of. When I got sick, I had so many people rush to my side and rally around me. The love and support was amazing and I am still overwhelmed whenever I receive an email, card or message from someone I talked to two days ago or 15 years ago. But you also learn that some people just can’t deal with it and that is okay too. Cancer is scary and not for everyone.

7. Being a mother makes you push yourself to depths you never knew you had. I remember putting photos of my monkey up in my hospital room way back in the beginning to remind me who I was fighting for. I was fighting to be there for her – today and tomorrow. I would not let her grow up without me by her side. On days when I literally could barely do a thing – somehow I found energy to sit down and play with her, make her a snack or run a bath. She was my little battery reserve pack that I could always draw energy from. She also made me feel normal. To her I was just her mother and not a cancer patient.

6. Marriages and relationships require hard work. I always remember my therapist telling me something so valuable towards the end of my treatment when I was drowning in exhaustion and despair. I told her I barely had energy to function or be a mother let alone be a good wife. It was too hard to focus on all these things when I was fighting for my life. Her response – no matter what is happening in your life you can never drop the ball on the things that matter. Even though I had cancer, my marriage was still there and required attention and focus. What I take from this is that there will always be something in the way, something to put other things off, but you must continually go back to those things which matter most to you and put your energy into making them work.

5. Life is unexpected. Never in a million years could I have predicted that I would be sitting here now writing a list about the things I learnt from having cancer at the age of 32! Proof positive that life can throw some wicked curveballs. Now I don’t want this to make anyone afraid of what could be because most of those curveballs actually turn out to be really great. But when I say life is unexpected I mean treat your moments in life with respect and enjoy the little things. If there is something you really want to do but are afraid – why not try it? Time is the most precious gift we have so I now see how important it is to make good use of it.

4. Money is nice but not everything. I think I was a pretty materialistic person before this whole cancer situation kicked off and put a total spanner in my working life. Having not worked in over 2.5 years now, we have had to make concessions. I can’t have everything I want but I actually want far less then I used. Now I am not talking about living in a mud hut and subsisting on grubs and tree bark here. I always want to live comfortably and never struggle. However my health is worth more than any SUV, a day with my daughter is invaluable next to the latest handbag and having my husband home before dinner every day makes me feel like the richest woman in the world.

3. Boobs do not make a woman. Now I started this journey with a perfect set and now I am at ground zero. Sometimes I get angry when I see or hear women complaining about their breasts and I just want to scream – at least you have some! But I have come to terms with my new body and realise I am still a woman and I am still me. My husband said it best when I got upset about losing my other breast – he said “I would much rather have you for the rest of my life then a pair of boobs. “ Leave it to my man to make me feel special and loved.

2. Cancer brought me closer to my mom. My mother and I have always been close but not as close as we are now. I literally talk to her in some way every day because I want to. She allows me to talk to her without having to filter anything. She listens, offers advice and simply understands. Going through cancer together was so unbelievably horrific and comforting at the same time. We will be forever changed by this experience we shared and our bond has been made impregnable.

1. A good sense of humour can save you. From the beginning of this whole journey, I have tried to find the funny side of everything or at the very least a tiny silver lining. It helped me cope with the fear, with the uncertainty, with the pain and with the many challenges. I also think it helped everyone around me to feel better about the whole thing. If I can still crack a joke then I am still the same girl I was before this all happened. I like to think every joke I made about cancer killed off a few of those loser cells so that means they should all have been annihilated by now!

So now with this treasure chest of knowledge and insight, it is time to start making plans. For tomorrow and beyond. I no longer feel afraid of thinking ahead. I finally feel like I have earned the right to call myself a survivor.

Love, OBB

Wednesday, April 11, 2012

Changing Courses

Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward. Author Unknown

Well I made it through yesterday’s appointment and I do not have anything bad to report!
Today I woke up and felt strange. Almost like it was the first day of the start of a new life for me and to be honest it was slightly unsettling. Much of what I wrote about in my previous post ties in with this as I now have a whole six months where I don/t have any tests, doctors appointments, operations, or procedures. It seems like a very long time indeed and it makes me realise that my time as a cancer patient is well and truly over. That should be an extremely amazing thing to realise but it also scares me. It means a new life must begin and I have to stop living and breathing the Big C and start building a life away from it. It means getting stronger, it means becoming more independent, it means finding a job – it means standing on my own two feet. I was thinking this morning about a time years from now when I will probably hardly ever talk about this moment in my life. It was so weird to think that there will be a point when the memories fade and it won’t be who I am anymore. It will be a nice point to reach but when something has infiltrated every element of my life (not to mention my cells), it seems strange to imagine it not being so big anymore. Times of transition always make us unsettled or unhinged in some ways. This is definitely a time for transition for me.

So yesterday’s events were less dramatic then I had imagined. As I have been in quite alot of pain the last few days from the operation, I made a stop on the surgical ward first for a check up. Earlier a I was heading down the road to the hospital, I suddenly felt my eyes stinging and I took a few deep breathes in order to keep the tears in. Why this sudden emotional reaction? Probably the day ahead of me but also I couldn’t help but remember a year before when I had gone to have a surgical wound checked out on my own and then suddenly was told I had cancer. Maybe my biopsy results are already in. Can I tell them I don’t want to know anything today? Once you have been traumatised it is hard to not think the same will happen again. Well all my worries were unnecessary as we didn’t discuss anything but my pain which was normal and to be expected. When the nurse whom I have known since my first surgery asked how I was doing – the gates to the dam burst and the tears flowed. I told her how tired I was of being in pain, how tired I was of everything. She was so comforting and told me she knew I had a great mom so she could be like a grandmother to me. She understood how hard it was for me being so far from my family and friends. So after a cold splash of water to my face, I pulled myself together as any superhero would and with a hug I was off to my next appointment.

I passed a doctor in the hallway who remarked on how great my hair looked. I remember her well – she was the one who suspected I had metastasis in my back when I had had some back pain in September. Thankfully I didn’t but she made damn well sure I would never forget her face!

It was a very busy day in C-Town and there was hardly a seat to sit in and wait. I then met my husband which was nice as I needed a familiar face amidst the sea of faces laden with pain, exhaustion, and worry. Cancer centres can be incredibly depressing places. Then I saw my dear oncologist and his sidekick who I have a very good dialogue with and knows how deeply terrified I am. She told me she would come to the appointment to make me feel at ease as I told her I often go into autopilot whenever I see my own doctor and never manage to ask the questions I want out of sheer terror. Not this time – she knew my agenda. My doctor had also been briefed as he smiled and opened with a joke. We talked through all my points and found answers to most of them. Now I don’t usually go into any scientific detail on this blog but I will this time. I think I mentioned that I take a pill every day and will do for the next 5 years which is designed to be an extra line of defence against a cancer recurrence. Normally women with my type of cancer (triple negative cancer which tests negative for all hormone receptors and Her2) have only chemotherapy and radiation as options for treatment. TNBC accounts for something like 15-20% of all breast cancers and tends to present in younger women and is known for being quite aggressive. What we would call an overachiever in the cancer world. Anyways for some reason my weird body showed that my cancer was predominantly TNBC but then had a small hormone element which was rare but qualified me to take the hormone therapy. Now we are finding out that in these cases the results can often be false positives which means I could be taking a pill with crappy side effects for five years with no added benefit. Not cool! So they will dig up that old tumour and see what else we can decipher. In a weird way I hope I am able to continue taking the drug as I will take whatever extra protection I can get against this beast!

So we talked about pain. What is a pain worth calling about? How do you tell what is a sore muscle and what is deadly cancer? No easy answer there folks. Better to run it by them then not was their advice. This will be a hard one for me as I don’t want to be the crazy lady who calls for everything but I also don’t want to miss something serious. And I already suspect every pain I have to be cancer anyways!

Next on the agenda was the PET scan. They would like me to get one in the next 6 months which is a big deal. A PET scan is the most in depth method of detecting cancer. If there is a cancer cell in your body, this machine will find it. It will also find all sorts of other things that could be cancer but most often aren’t. Hence the high levels of anxiety that goes along with it. It really is a double edged sword – in one way you could get a ton of relief if everything is okay whereas on the other hand you could find out something horrific. And I just don’t think I can take anything horrific anytime soon. So I will think about it and figure out when the right time for me to do this is. I think right now myself and my family need 6 months where we can just be a family who does normal things and whose life doesn’t revolve around cancer. My husband and I often think - wouldn’t it be nice to have an overnight babysitter because we actually were going to do something fun as a couple and not because I was bedbound from chemo or recovering from surgery! So now is the time to do that.

So after a physical and some blood tests, my doctor shook my hand and handed me my next appointment for September. Yes September!! For the first time, I felt like he believed in me. Like maybe there wasn’t so much to be afraid of. Like maybe everything really will be alright. And that felt good.

I don’t know how this blog will evolve with the end of my main treatment for cancer having ended. I guess like the next few months, we will just have to see where the wind takes me. I am setting sail on another journey yet this time the weather doesn’t appear so stormy and I hear sunshine is expected.

Thank you for being with me the last 12 months and I hope you will stay on for the next ride.


Saturday, April 7, 2012

Drifting between worlds

Well my dear friend has just left and I am sitting here feeling quite reflective. I was fortunate enough to have someone, who I have known since we were babies, with me this week and it was the best medicine for me. She came laden with goodies and spent the week cooking and cleaning for me. But more important then any eggplant parmigiana or flour-less chocolate cake were the talks. We talked a lot. About everything. Sometimes I don’t realize how much I miss the people who have known me and I have a history with until I spend a good few days with them again. It is so easy, natural and effortless. There is such a comfort in it and at a time like this it helps me stay sane.

Through our intense and even intellectual discussions, we talked a lot about how I have grown increasingly afraid in the last few months. Afraid of all sorts of things like break-ins, gypsy pickpockets, natural disasters, medical emergencies, anything bad happening to my family….I could go on and on. I have spoken about much of this before but it has become increasingly worse and almost like an obsession for me. I wanted to understand why I felt this way and now I think I do.

I have been a confident and strong woman for most of my life and also been through my share of ups and downs. I went to 6 different schools during elementary and secondary school (not an easy thing to do) and managed to make friends wherever I went. I spent a good portion of my earlier life willingly waking up at 5am most days while my peers pressed their snooze buttons to jump into an icy pool to swim up and down a thousand times. I also decided at the age of 24 to throw my life upside down and follow a dream to move to Europe. I can be quite fearless and gutsy at times. I rarely look back and when I want something I go for it with a fierce determinism.
But these days I sometimes don’t even recognize myself. I have moments of such self doubt and weakness, moments where I don’t quite know my function or identity and moments when I am just plain afraid. I am afraid of so many things because I feel so vulnerable. I used to be independent but now after being sick I experienced being weak and requiring nonstop care and help. I am so fortunate to have had such a wonderful support system around me to get through this but at the same time having experienced this vulnerability and facing my own mortality, I don’t feel as brave or self assured as I used to be. I mean if something happened how could I do this on my own? The thought makes my blood run cold. And as I have learnt – no one can predict the future and you can be utterly blind-sided by life. I so hope nothing else happens and I am able to slowly start to build my life back up again. This will include finding my new identity which I am still unsure of what it will be. It is hard right now as I am not a full time cancer patient anymore nor am I am full time stay at home mother. I don’t have a job to go to each day nor do I have the energy to seek one out yet. I am between worlds and desperately want to find me again and stand on my own two feet abit more. I also don’t want to be afraid and I want to live as if I won’t ever get cancer again. What other way should there be right?

I know I need to be patient with myself and that I can’t change everything overnight. Little steps day by day as I begin to carve out a new me. Acknowledging progress, any amount, will be essential to not feeling defeated or more vulnerable. I also think being realistic will be important in trying to achieve this. I can’t do this overnight, or even over a few weeks, this will be a new lifetime project for me. But I am committed to getting there because that is the type of person I am. The type of person who tackles a challenge and comes out of it - a better, stronger version of myself.

In other news - I will be having a big appointment on Tuesday morning which has also been weighing on my mind. In the cancer world, our checkups are synonymous with worry and anxiety. Depending on your diagnosis and time post treatment, these can vary from every 3 months to 1 year. This is the first big one for me – the one year post diagnosis check up. I am not totally sure what they will do but they will test my blood for any biomarkers (signs of tumours), feel my glands and investigate any areas of pain. Perhaps scans if required. You so want everything to be okay because after going through it all once you just cannot imagine or mentally handle hearing or living through it all over again. So please send happy thoughts my way Tuesday and I look forward to writing about how well things go.

Happy Easter everyone! Eat lots of chocolate.

0BB (My new name is now the number zeroBB as it is much more fitting for me post surgery but also stays true to the original. I would like to thank a regular reader of this blog for her creative suggestion.)

Monday, April 2, 2012

The Paper Anniversary

It is my first wedding anniversary today and in true OBB style, our day involved a visit to the hospital and an extremely "high ick" factor post op procedure that is still making me quesy. But you got to do what you got to do right? So while I have been recuperating, I have had lots of time to think about the last year and our first year of wedded bliss! In my opinion I think we have opted to start with the hardest year of marriage now and things will just get easier for us from hereon. One can hope...

I have always been a romantic and was the girl who wrote endless poems about unrequited love, would get swept up holiday romances and really believed in fairytales. That is why it is so interesting that this girl who grew up thinking about the ring, the dress and the party ended up getting married with none of these things. We didnt even have a proper proposal which I think made my husband¨s job that much easier. It was the day we found out about "it" and we were lying in bed that night absorbing the days events. It was then that we jointly decided that we wanted to go through this journey as husband and wife. There was no ultimatum, there was no bended knee or a violin playing in the background but boy did that decision come from a whole lotta of love. We had already lived our vows in a way before we even became married - through sickness and health. Words to live by in our case. So in between my diagnosis and my scheduled surgery, we planned a wedding. I think we managed to plan the whole thing in 10 days. And you know what? It was perfect. Of course given our tight timeframe and my insistence that I be married "whole", it made it hard for everyone to be there but their absense didnt make us forget them or the importance they had on our lives.

One of the nicest things about our special day was that every single person there (minus children) got up and gave a speech. A speech about us as a couple and us as individuals because everyone there loved and knew us both. The sheer intimacy of the event paralleled the intensity of the earlier events that brought us to that day. And I could not have picked a better partner to be by my side. When I think of all the boys I have dated, I have wondered how they would have reacted to my news had I been with them. I mean not everyone can handle this kind of stuff so young and I dont blame those who cant. But rest assured I now know that my partner in life must be fairly adept at weathering the ocasional storm. And my husband is the best captain I know. From his calmness to his recognition of his own sense of vulnerability, he has been there for me. He has fed me, cared for me, listened to me, held me and most improtantly loved me through it all. It cant be easy for someone to watch the person they love go through some truly horrific things all in the name of trying to stay alive. To have to watch and not be able to take the pain away. I can imagine that this past year was very hard for him but I am still in awe at the way in which he managed it all and tried so hard to be the strong one. That is what being a partner is about - as he says "most of it is just showing up and being there." So I guess he stayed true to his word because I never felt alone. And I cant think of anyone else who could make a woman with no hair or eyebrows and a mangled body still feel like she is the most beautiful woman in the world. You make me feel like that every day my dear. For that I love you.