Wednesday, December 11, 2013

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. - 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

Thursday, November 28, 2013

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. :)



Tuesday, November 12, 2013

Six Digits Later - Part 2

Hi Again,

Just to let you know that I made a few revisions to Part 1 -please check it out again.

So Part 2 of my six digit celebration involves hearing what some special friends have to say about the past few years. It was hard to decide who to ask to spill their heart as there have been so many amazing people supporting me on this tough road. I decided to look at the three main parts of my life - the early years, the London years and my present Norsk life. I asked three girlfriends to write about how my illness has impacted our friendship, what more they learnt about cancer and any advice they had for others. What came out of this exercise was beautiful emotion, touching memories and a whole lot of love. I wish I could have included little snippets from the thousands of messages I have received via this blog over the past few years but I will save that for the book. :)

"I think if I've learned anything about friendship, it's to hang in, stay connected, fight for them, and let them fight for you. Don't walk away, don't be distracted, don't be too busy or tired, don't take them for granted. Friends are part of the glue that holds life and faith together. Powerful stuff." Jon Katz

My life is so rich because of the people that are in it and I appreciate these three ladies putting their emotions on their sleeves. Not everyone is as comfortable putting it all out there so thank you.

1) The Montreal Years by Lara

Kate and I met as 4 year olds in a local preschool program. For those blog readers out there that don’t know Kate personally, you should know that she has an amazing sense of humor, and to this day, can make me laugh until I cry. One of our favorite things to do when we were young was to stage very dramatic, fictional skits. And looking back, some of the scenarios we came up with were downright bizarre. We invented a very intricate storyline about two old women named “Milly and Tilly” (played by us) who were essentially cranky old biddies who made fun of one another and screamed off the porch at (imaginary) neighborhood kids. We coerced my two little brothers to play their unfortunate husbands, and would rope them into what we thought was our hilarious game by barking orders at them to “make us lemonade” etc. To our parents’ credit, this somehow did not alarm them.

Kate and I are very different. By 12 years old, Kate was close to 6 feet tall, and I was about 4 ft. 5. She has older siblings, and knew the “ways of the world” before I did. She had already fallen in love by the time I was getting fitted for my headgear. And I am a land mammal, while Kate on the other hand was born to be in the water. She was a nationally ranked swimmer and incredibly strong and fast in the water. I never heard her complain about the long hours at the pool, the early wake ups in the middle of winter, and having to juggle schoolwork with swimming. (She did however have a way of getting people to massage her back and shoulders  - often.) Kate was focused and dedicated, but humble. She never took herself too seriously to have fun, laugh, and celebrate her friends’ triumphs. We had so much fun together, and there are so many memories … of food fights, bike rides, listening to music in her room, and dreaming together about what life had in store for us. Neither of us could have imagined that she would get cancer at 31.

I was planning a one-year move to Sweden when I heard from Kate in early 2011 that she had been diagnosed with breast cancer. Let me just pause here to emphasize that cancer sucks, and I hate everything about it. But in a way, Kate’s diagnosis brought us closer together. During Kate’s first round of treatment, I was only a bus ride away from her after years of living on separate sides of the country or world. It turns out that all the memories had been waiting there like little seeds in the ground and before long, a new friendship had grown out of the old one. I am so grateful for that.

When I spend time with Kate, I am aware of every version of her, past and present. The wide-eyed child, the comedian, the poet, the romantic, the fierce competitor, the intelligent woman, the ambitious professional, the adventurous spirit, the lover of life, the mother, the wife. And always, the loyal friend. What I have learned from being Kate’s friend throughout two cancer diagnoses and rounds of treatment is that cancer does not define a person. Cancer does not sum up who Kate is (it couldn’t if it tried!) even though it has done everything in its power to take over. I have learned that thoughtful questions are often more supportive than advice. I have learned how to hold hope when sitting with a friend in the dark places. I’ve learned that there is such a thing as a badly timed joke, but that laughter is ALWAYS good. And I think our make believe game about being old women was just practice for the day when we’ll sit on a porch somewhere with white hair and lined faces, and make each other laugh.

2) The London Years by Charlotte

What do you write about your friend who has cancer? She is brave, she is beautiful and she is OBB. Now oBB. She is also honest, afraid, and vulnerable. That's what I've learned from having a best friend battling cancer, it's a constant tale of 2 halves that give as quickly as they take away. It breaks your heart, yet the fight gives you hope, and it leaves you angry whilst showing you depths of friendship and love you never knew possible. You'd never wish the experiences Kate's been through on anyone but it has taught me huge amounts; and in many ways it has given our already wonderful friendship strength to be forever treasured.
Kate and I met in London almost 9 years ago and we lived a very happy, sometimes scandalous, few years together! London brought Atle and Kate together and I watched her grow into a woman ready to be a wife and mother. Looking back, yes we were close, but in some respects we were in danger of our friendship becoming another transient relationship that you often find in London, great fun but once distance (such as Kate moving to Oslo) is added into the mix, the depth of friendship can waver. However, when Kate was first diagnosed, we became closer than ever. Cancer can take an enormous amount away from you, but it gave us a solidarity that now nothing will ever change.

The London days now feel like a lifetime ago, Kate, Atle, and Ida have been through so much since then and I've seen my darling friend go through pain, heartbreak, and unimaginable fear with dignity and unwavering love for those around her. Her writing has allowed us into her deepest thoughts, and her ability to create hope and humour out of some of her worst experiences has inspired others fighting this awful disease. As her friend, I've felt my own array of emotions during this time from enormous amounts of pride and respect, to deep sadness and anger on her behalf. I've also felt terribly selfish at times but I've learned that's ok. It's ok to continue your life as best you can and enjoy it. Kate would hate it if we were all miserable on her account. It's ok to tell her to pull herself together on the rare occasions she has truly dark days and it's ok to cry tears for her and for you because you are going through this too. That's the thing with cancer, it doesn't just happen to the person diagnosed, it's a team effort and everyone close to that person is affected and is allowed to feel their own pain from it.

My advice to anyone in a supporting role would simply be to appreciate there are no hard and fast rules on what to do, you won't always be perfect and you won't always get it right, you'll say the wrong thing sometimes and you'll inevitably not know what to do most of the time. Just be there, listen, stay true to your friendship (because it'll keep you both sane) and have your own support network you can fall on when you need to break down.

Kate, you have always been the most wonderful friend and in the face of real adversity you have remained one of the people I rely on most in the world. You've been mid-chemo and checking in to make sure I am ok, you've worked tirelessly to ensure you remain the wife and mother Atle and Ida need. You've helped create the woman I now am by teaching me about true courage and valor, my respect for you is endless. We are both far from perfect but I'd argue our fun, honest, unquestionable friendship is, and for that I am eternally grateful. We are no longer the carefree girls from those distant London days, we are young women with battle scars of varying degrees that make us people I admire.
Atle, thank you for being the man who loves my friend. Ida, you are a delight in every way and you bring joy to us all. Every piece of love and sense of pride I have for Kate, I have for you both also in equal measure.

3) The New Friend

We were still getting to know each other when Kate was diagnosed with cancer. Being a scientist of some sort, I knew about Herceptin, the BRCA genes and the problems with mammography screening, but I was completely naïve about the particular issues faced by young women with breast cancer.  I saw my (new) friend make difficult decisions like foregoing immediate breast reconstruction, as it would mean precious weeks where she would not be able to cuddle her baby.  I saw how she sat and held and loved my new baby while facing great uncertainty about her own ability to conceive again.  I saw how over and over again, time away from her child was one of the worst consequences of her treatment.  There have been many many nights when I have been up with my own sleepless, screaming children and have felt an immense gratitude for being present, for being able to care for them.  If it hadn’t been for Kate´s example, I likely would not have found this grace.

Finding ways to support Kate since her diagnosis has been easy.  Although she often uses humor to communicate what she is going through, you can hear what she really needs if you listen carefully enough. And by listen I mean listen in the broad sense – to the silences, the hesitations, the body language. I also recognize that Kate´s needs are often (always!) bigger than what one person can help with alone – so I often reach out to her other friends (and not only the closest ones) – and tell them the specific ways I think we can help.

It is natural and perhaps necessary that friendships evolve when someone is facing a major illness.  Shortly before Kate started treatment, I remember saying “I know I am not your best friend in the world but I am going to try to act like I am.”  I have definitely tried to live up to that, and in doing so gained Kate as one of my best friends in the world.

Saturday, November 9, 2013

Six Digits Later

Hi Everyone,

A major milestone was reached this week - my blog hit the 100,000 mark in terms of visits. Now I know I am no Kardashian or Adrianna Huffington but I think reaching six digits is definitely an achievement and I would have never made it here without all of you. It all started in a flat in downtown Oslo when I was a week or two post mastectomy and pondering how the hell I would get through the Big C. And now I have been through a whole other round but am most importantly still here. This blog has been so deeply cathartic for me and allowed me to say what I feel and face some of the more difficult experiences and emotions. It has also made it possible to keep you all informed of how I actually am doing without sending a hundred emails which is key when you are operating at a severely reduced capacity. This blog started with a small army and has grown into a full force to be reckoned with and for that I am forever grateful. You have been there for me through it all - pulled me up when I was down and celebrated the wins that were so special. In celebration of this, I will remain silent for once and let some special people who have been here from the beginning tell their side of my Big C. It will be written in two parts as it appears that "my people" have alot to say and I don´t want to edit out anything because it is all so important. I hope you enjoy it!

Part 1: The OBB Family

The words of my dear husband (AKA My Cancierge)

Six things I learnt from C.A.N.C.E.R:

Courage - you find a whole lot of this in the person you are supporting with cancer and most likely you will realise you yourself have much more of this than you ever thought. The most courageous person I know is OBB.

Anger - cancer makes you angry and that's fine. If seeing this happening to a person you love, isn't a valid reason to be angry, nothing is. Just remember to not always be angry. The person who needs you wants to see your smile when they are feeling down.

Normal - to a certain extent cancer is a part of life. I learnt that breast cancer is much more common than I thought, with about 1 in 10-12 women being affected. To our advantage and because of how "normal" breast cancer is, science has made leaps and bounds over the past 20 years increasing survival rates by 50%. Go Science!

Control - as a cancierge (someone supporting someone through cancer) many things are out of your control. This is extremely frustrating. My advice is control what you can control. Be practical and make sure you keep your home nice and you children fed. Make sure feet are rubbed, tears are dried and hugs and kisses are given. You are now the rock and the person who will keep the cogs of a family turning whilst you get through this. Embrace the role, but don't be scared of asking for help from family and friends.

Expectations - when this happens to your loved ones it is very hard to know what expectations the person with cancer has to you. Presume they have none. They know you can't cure their cancer. But don't let that be a reason not to show them you care. If you think about something you would like to do for them, but you hesitate to do it because you expect they do not want to be disturbed, throw that expectation out the window and reach out. It will be appreciated.

Real - cancer is very much real and no longer anything I thought only happened to someone else. Although part of our "innocence" is lost through this I have also discovered what real love is. I love you, OBB.

The words of my lovely mother, a breast cancer survivor herself. 

Cancer. Scary word. It happened to US.

It first happened to you and then it found me. You and I have collided unexpectedly across the generations on this cancer journey. For me at my age, it was within the norm; for you at your age, it is not in the norm. We shared this new bond reluctantly. I was the passenger who asked for “Permission to board the vessel” ( Blog # …). You forged the way with surgery and chemo. When it was my turn, you advised and supported me. Our closeness grew.

I was devastated when you were given your diagnosis and found myself in the frightening position that I could not fix it or make it go away. That’s not what mothers do. I witness your suffering and it twists my heart. So what could I do? I can walk by you, share your load, listen to your cries, fears, and hopes and surround you with my love.

Through our almost daily texts or chats, I learned that listening helps, providing perspective can help but not giving advice. … That pervasive fears, feeling sick, sadness and frustration are very much part of this journey and need acceptance. I can only imagine but never fully understand another’s  experience through a life threatening illness. It keeps me humble and attentive….Also that recovery is much slower and more subtle than one would assume…. that symptoms can linger for many years but often are invisible. Cancer changes the person. The expectation of wellness can be  a burden to the sick person, so be cautious with asking” How are you?” .  Within myself, as a mother, my life has become a silent prayer for your well being and healing. I ask for the graces that you need, each time something difficult arises.

With amazing skill and originality, you chronicled this unwanted and troubling experience from the start. You brought shape and reality to it, with your honesty, and sense of humor. Your words have tamed this frightening and life altering experience. Your blogs, show your amazing capacity to transform your fears, name your feelings and experiences and chronicle your progress. Through your courage and clarity, you have become a beacon for others. You inform, and evoke compassion and love. And you have gathered through your blogs an invisible but mighty support.

I believe, some of my prayers are being answered. You, my wonderful daughter have emerged through these challenges as an extraordinary, loving, courageous, and very articulate young woman. I am proud of you. You keep going day by day, looking ahead, even when the going gets very rough. You love your little daughter, my precious little granddaughter, and remain connected in love with your white knight in shining armor. He also deserves serious accolades.

Kate, you have also inspired and engaged many of my friends, to pray and care for you, They also support me because they understand how difficult it is to witness your child’s suffering. You have created a circle of support, across generations, - now with over 100,000 readings of your blog. We all want to see you get well and are wishing a mighty wish. We know there are no guarantees and accepting the unknown is a daily chore. What we know that you are loved, respected and even admired. You shine with a bright light! I love you abundantly. Mom  

Thank you to my dear husband and mother for being a part of this celebration and being there for every step of the way. I love you both.

Last Words...

While putting my daughter to bed last week, I asked her a question I hadn't asked her before - "How did you feel when mommy got sick?"

She looked at me pondering the question and then said (in Norwegian) "Mommy - I was sooooooooooooo scared."

Me too too. 

Look forward to Part 2. 



Saturday, November 2, 2013

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!


Tuesday, October 29, 2013

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

Saturday, October 26, 2013

Great Expectations

"Life is pleasant. Death is peaceful. It's the transition that's troublesome.” Isaac Asimov

I am sitting at the desk in my room up on a hilltop away from the rest of the world. You cannot even see the lake that curls around the building because of the heavy dense fog today. The weather perhaps best matches my kind of mental state - heavy and low. I am on day four of my rehab adventure and things are not going quite the way i had intended. I don´t know if my expectations were wrong and I was off the mark by expecting a happy go lucky place where the rooms were like a hotel, there were spa like treatments and the people warm and open. But this has much more of an institutional feel and I am really finding the whole experience challenging. I pride myself on being fairly open and friendly and can make friends pretty much wherever i go but this is a whole other level. In addition the fact that the staff have not been able to actually give me a plan for my stay until next week and I am one of the few that are not allocated to a group, makes it even tougher. Life revolves around groups here and there is little mingling outside of them. There is the muscle skeletal group, the back group, the heart group...and so on...And then there are the few islands like me who float along on their own but it seems those who are "lone rangers" are quite happy to exist on their own and keep to themselves. Hermits is perhaps an accurate description. No joke - I had a man who sits at my table actually put his hand over his face while he ate to avoid making any eye contact for me. But for me - being plucked out of your comfort zone and put in a new different place away from the people you love, having all of life´s normal distractions gone and being pretty much on your own, is my idea of a nightmare. I think most of you, despite what you say, would freak out too.  And let me tell you - time alone with your thoughts after having gone through what I have is a dangerous exercise. I am craving common ground - people who get what i am going through and understand what it is like to be so sick and be a parent at the same time. People who have had cancer would be a good starting point. Maybe I didn´t do enough homework before I came or failed to truly understand what an "individual program" meant but this is bloody hard! I know there will always be an element of transition involved in something like this and it is common for people to freak out abit when they first arrive here but I am struggling to see what benefits I am getting from being here right now. I know I am impatient and my illness has made me even more so as I am so angry at the time I feel has been taken from me and I want my life to start again right now. But I feel low here and am surrounded by people who seem much worse off them me. I can sit and talk with them and there are definitely some nice people here but they don´t understand my situation nor do I theirs. And I don´t think I am being that over dramatic because I was adopted by the Lung-Emphysema group who felt so bad for me eating alone and not having anyone to do anything with. Very sweet of them and I am ever so grateful for their kindness but this is not what i signed up for and I can´t relate to them. And last night the resident doctor took me under his wing and invited me to dine with the nurses and physios seeing as most of the time no one sits at my assigned table. When I brought my tray of baked fish and boiled potatoes (there is no chance I will be putting on any weight here!) over, the physio said to me "Oh are you a visiting medical student?" God how I wish i could have said yes - anything feels better then being a patient.

In my discussions with the kind Danish Doctor with the big beard, he has asked me lots of questions and listened to my difficulties in transitioning to life here. He even offered to drive to the closest city to pick up my husband and daughter to come visit me. What a sweet guy! But I told him that if they came now I would most definitely pack up and leave with them. I told him that a big part of me doesnt want to give up and feels so silly and embarassed for wanting to pack up and go home with my tail between my legs. It isn´t me - i am a fighter and I thrive on new adventures and experiences. But this feels so uncomfortable and all I can think about is my family that I am not with. I knew it would be hard to be away but not this hard. My husband tells me that I am not in prison and can decide what i want to do and he is ready to come break me out of here as soon as I send the sign. But I am reluctant because I want to try and tough it out. I guess you need to try and find something positive out of every experience (FYI - the Danish doctor disagrees with that statement). I am trying really hard to do just that and rest, do nice activities, etc...but maybe this isn´t me. Becoming a patient again surrounded by people in reduced capacities isn´t exactly the most empowering environment. I am so desperate for my life to get going again and it feels like groundhog day here. My advisor (the doctor) tells me that I am someone who needs to learn to slow down more and put myself first and being here is doing exactly that but I just don´t know if I can stick it out. I am so conflicted. I do feel like one of the only things keeping me here right now is a fear of defeat and of people thinking I am crazy for not enjoying this opportunity I have been given. i know lots of people would give their right arm to unplug for a few weeks away from everyday life but I just don´t know. Being away from my family is hard and I need to feel like it is worth it. Right now I don´t know. I don´t know alot right now. So as you can see things haven´t quite worked out the way i had imagined - there is an internal struggle ensuing inside me. And I don´t know which way it will go.

A Conflicted OBB

Thursday, October 10, 2013

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.


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.

Friday, October 4, 2013

My Pinktober Story

A long time ago, there was a little girl who grew in a white house on a street in a typical suburd. The street had an archway of tall proud maple trees that would frame the road - in winter the tress would stand like bare skeletons with sprinklings of snow and in the fall they would be covered in the most amazing reds and oranges. She grew up surrounded by love and was fortunate enough to never really know what it was like to feel sad, to suffer or be invisibible to those around her. She had parents who believed in her and enabled her to do everything she set her mind to. She had siblings who she looked up to and tried to copy all the time. She even had a lovely dog who was loyal and provided extra comfort on days when she needed alittle bit more. It was a life filled with colour and happiness. I don´t think this little girl quite understood how lucky she was at the time and perhaps thought that this was the way everyone lived. Because how else can you know at such a young age? Your life is really all you know. As she grew up, she became disciplined and motivated to succeed is all avenues of her life. She made friends easily and used her sense of humour to make life just alittle bit funnier. As she got taller, she also discovered that she had lots to learn and not all her qualities were perfect. This was when she really started evolving as a person. As the years passed, she learned more and more about what she wanted out of life and also the things she didn´t. She wasn´t afraid to take chances and close her eyes and just jump. Sometimes she hit hard ground, hurting herself in the process, other times that leap took her to the most amazing places. And with every step, a lesson was learned. Her taste for adventure eventually took her across the world to start a new life that she had always dreamed of doing. She also left behind some very special people too that made some days tougher then others. Life on the other side of the ocean was exciting but scary. While finding her feet, she stumbled quite a few times but never left an experience behind without taking something valuable from it. She learnt so much about relationships - what she wanted, what she didn´t, how hard it can be to change, how scary situations can get. Unfortunately, she also got her first taste of tragedy and sorrow, losing one of the most important people in her whole world. It was sudden, it was horrific and it changed her forever. Life didn´t always listen to what we wanted and nothing could ever be taken for granted again.

True love took her by surprise on one very ordinary day. It didn´t take flight immediately but rather took some twists and turns before it found its way forward. But when it happened, for the first time she knew. She really never looked back after that and everything else fell into place. All the things she had been afraid of and not ready for suddenly were things she wanted.That fearlessness and sense of adventure kicked in again and she packed up her life and headed to a new place, a new life. It was here that she built a family with her other half and  the most beautiful little girl joined this world. Again, she changed through motherhood into an even better version of herself. She loved being a mom and loved this little person more then she could have ever imagined. Having this little angel set up a chain reaction of events that took her all the way to today. Still to this day, she believes that this baby saved her life and that the darkness in her that was growing would have gone too far. It keeps her going, this knowledge of how much worse things could be. But this little girl who became a woman, then a mother and finally a wife also became a cancer patient. That little girl who collected piles of leaves in the backyard and jumped off the deck into the soft mountains of yellow and red, never imagined things would be the way they are now. Fighting for her life - the endless hospital visits, operations, treatments, constant pain,   and learning to live with all this uncertainty - was never part of the plan. Being part of this group of pink soldiers at such a young age still feels so strange and foreign, like it is actually happening to someone else. Not her. But the scars, the physical limitations, the cabinet overflowing with pill bottles reminds her of the truth. Her fear over what will happen tomorrow reminds her of the truth.  Instead of thinking of one day buying a cottage in the mountains, of making it to the top level of her career, of growing her family - all she can think about is being given the chance to stay alive. She sees now that it isn´t about all that extra stuff around you that makes your life whole, it is actually being there to participate and be in the moment that means everything. Like a wise person once said, you can´t take all of this stuff with you when you go. All she wants is to be there to watch the people she loves grow up just as she did - surrounded by love, happiness and a few piles of leaves to dive into!

I am the face of breast cancer. You don´t need to be too young, too wealthy, too healthy or too fearless to be called to the pink army. Empower yourself and know your body. I never want to lecture anyone or make anyone afraid but if my experience can save someone else from living my reality then I have succeeded. We never know where the road will go so make sure you don´t always just look ahead at what´s coming but also look at what is happening right now.


Saturday, September 28, 2013

Call me Rare

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

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

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

A fragile and slightly sore,


Friday, September 20, 2013

Bad Timing and Luck Required

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

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

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

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

Tuesday, September 17, 2013

One Ticket to Crazy Town Please

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

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


Tuesday, September 10, 2013

Not The Weekend We Had Planned

Warning - this is a long story. :)

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

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

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

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

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

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



Wednesday, August 28, 2013

Dream Big or Go Home

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

Yesterday I got distracted from my primary cancer and found myself at another hospital for my “other” cancer screening appointment. It is so difficult to worry about so many body parts that are seemingly ticking time bombs. One cancer is stressful enough! I had forgotten about my other threat the last 6 months with everything that had gone on but reality came racing back to me again. I always make jokes with my doctors and this serious German one was no exception. I think she was surprised by my upbeat mood considering the gory details that she had just read in my journal. But that is how I survive – it is my way of continuing on this long lonely road. I joked that I was running out of body parts to remove! Cancer patients are permitted to have fairly morbid senses of humour. I told her how I lucked out and ended up with the full cancer spa package as well – lucky me can they throw in a pedi as well? When we got down to business, we talked through things and she brought up the discussion of my ovaries again. “So what discussions have gone on regarding the removal of these?” she asked. Hmmm....simple question long answer. What I said next came straight from my heart, from that place where hope still lives. I told her that we had discussed this is exhaustive detail many times and that I had fought my oncologists to keep them in longer. I had the support of some of the specialists who believed there was no urgency for now and that making a young 33 year old woman menopausal potentially held greater risks. I explained that I was fully aware of the seriousness of my situation and my absolute first priority was to stay alive. However I still had dreams and in those dreams maybe just maybe one day I would get the chance to bring another child into this world. I almost feel 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? :)


Friday, August 16, 2013

What would you do

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

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

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


Wednesday, August 14, 2013

Once a Soldier Always a Soldier

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