I Want To Grow Old with You

"There is always a lot to be thankful for, if you take the time to look. For example, I´m sitting here thinking how nice it is that wrinkles don´t hurt". Author Unknown

Hello everyone,

I am checking in with you all and having an all around pretty good day. After spending the last week or two, permanently stuck under a black cloud of despair, the sun has come out again. And boy does it feel good. I was getting abit worried about myself and wondered if I might be in a darker place then I thought. It is impossible not to feel down or depressed when you are facing cancer and I have no problem admitting that I sometimes wrestle with the big D sometimes. How could I not? The last week and half just sucked. My hair was falling out, my body hurt, I felt ill, I couldn´t do anything, and I felt like a prisoner in my own body. Some days I wish so much that I could just unzip myself out of this body and get out to have a day without cancer or pain or tiredness. Because no matter what I do, I never ever really get away from it. There is always something that pulls me back to the present...the situation at hand. And I have been dealing with alot of anger at so many things. I feel like I am living this cancer type of groundhog day where nothing changes. It is the same every day and I find the repetition of it all so hard to bear. I also feel like everyone else seems to be moving forward with their lives and doing all the things I want to do. Instead, we have fallen behind again. When I had begun to work again and be part of the normal world, I felt like I had made up for the some of the lost time from my first diagnosis, but suddenly I feel even further back then I was when it all first kicked off. And god does it make me crazy and often sad. Cancer girl in waiting I guess.

But onto the matter at hand that I has been on my mind the past few days. June is a month full of birthdays of both family and friends. Some people are turning 5 and others are turning 40. Everyone is dealing with the prospect of getting older in different ways. Some of us can´t wait to grow up whereas others would like to press some imaginary pause button before they truly start to feel old or god forbid - middle aged. I also watch alot of the Real Housewives shows (don´t judge as this is pure escapism tv) and those women are obsessed with stopping the clock and will go whatever length possible to remain youthful. I started to get annoyed if not angry with all these people worrying and fretting over the ageing process. You know why? Because growing old is not a right but rather a priviledge. I have people I am fortunate to call friends who are dealing with the reality that they wont get to their 50th birthday, or have Christmases surrounded by their grandchildren, play bridge at the seniors center or enjoy the peace of retirement. That is a tragedy. Not a wrinkly forehead or saggy bottom. I myself live in constant fear of losing out on the chance to grow old. Never have i wanted a face covered in wrinkles, hands peppered with liver spots, and a head of silvery shining white hair more then I do now. I want to be there to see everything come together in the end. The future is sure to be an amazing place full of new discoveries and adventures and I want to be there to see them. So next time you worry or complain over your scary next birthday or try and fight the hands of time, remember what a luxury it is to have that time. In the end, nothing else really matters. Time with your loved ones, time to fulfill a dream, time to discover exactly who you are...these are the treasures of life. And I am certain none of these things can be found in a $300 jar of miracle wrinkle cream made from whale sperm! :)

Now I will get off my soapbox and stop with the lecturing. The greatest waste of a life is someone who doesn´t appreciate what they have - right now. So get out there and live.

Love,
OBB

PS: Hair update - still have a significant amount that is remaining attached however there is a small bald spot forming on the top. We will be monitoring it for further developments and decide what to do should it come to a case of "old man head". I am banking on keeping what I have now so I can go to my Onco and tell me "Hey buddy - you were wrong." :)

Hair Musings

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

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

A lighter OBB xxx

The Black hole

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

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

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

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

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

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

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

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

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

I Hate Goodbyes

"We´ll be friends forever, wont we Poo? asked Piglet. Even longer, Pooh answered."
A.A. Milne

Today the weather is grey and just downright miserable. Today my mood is distinctly low and slow. I am on my own today which I am struggling with to be honest. I had to say goodbye to a dear old friend who had put her life on hold and flown around the world to be with me the past two weeks. When she arrived, I was bed ridden and hanging by a thread to my own sanity. When she left, I had colour back in my cheeks, some meat on my bones and a smile on my face. She worked so hard trying to make my life easier. It was hard at first...to let her in. To let her help me. But with time I grew more comfortable allowing her to do things like vacuum, do the laundry and bring me tea. And oh how we laughed. I can´t remember the last time I laughed like that and unfortunately most of the time it was at her expense. But she was happy to be the target of my giggles. Living in a country that I love but also one that I have no roots or history with can be hard sometimes. I realised this through having my friend here. We talked about the funny things we did in elementary school together, the summers we played cards and gossiped about boys, and the times we tried and failed to buy alcohol underage! I am so lucky to have made so many wonderful friends here in Norway but there is something so comfortable and effortless about having someone with you who has known you from the very beginning. It is different. Today I miss her. I miss the company and the ability to just walk into her room if I needed to talk. Being alone with my thoughts can be a dangerous exercise and I feel so fragile today...so melancholic. I cried my eyes out when I came home from the airport yesterday and I have cried again today. And you know what? I am not a crier. I think the tears are about so much more. I am crying for the pain I am in. I am crying for the struggle that our life has become. I am crying for what is to come. I am crying for the treatment I must endure in a few days again. I am crying because all I want is to have a normal life. I am so scared and this is so much harder the second time around. I am tired...heck we are all tired of this never ending cancer merry-go-round. Everything is that much tougher to do and my body is not as strong this time. I feel it so much more and the simplest things become difficult. Thank god I am not alone. I have people - an army of people from the four corners of the world helping me climb the mountain. I just need to be more patient with myself and this process. And maybe get alittle more comfortable taking help when I need it. Lords knows I (we) need it and I don´t see things getting easier as each treatment comes.

So maybe today is a write off. I will cry with pride at the fight deep within my soul. I will cry because all of this sucks and I hate it. I will cry because I can. Tomorrow is a new day with new opportunities and challenges for me. A warrior needs a day of rest...battle begins again Thursday. I need my strength.

Lara and I at Halloween in 1990. (Yes I was that much taller!)

My dear friend Lara and I, celebrating Norway's National Day this past weekend.


Love,

OBB

* Oh and Lara - thank you. For everything.

The Day Mastectomies Became Hip

Hi Everyone,

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

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

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

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

Love to you all!

OBB

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

The Phoenix Rises...

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

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

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

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

OBB

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

Pre Chemo Ponderings

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

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

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

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

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

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

Love, OBB