Tuesday, May 21, 2013
"We´ll be friends forever, wont we Poo? asked Piglet. Even longer, Pooh answered."
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.
* Oh and Lara - thank you. For everything.
Tuesday, May 14, 2013
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!
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.
Thursday, May 9, 2013
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.
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
Wednesday, May 1, 2013
"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