Saturday, April 27, 2013

Back from Paradise

Hello World!

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

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

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



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

Sunday, April 14, 2013

My Month in Pictures

Hi Everyone,

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

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

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

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

Don't forget to enjoy your moments!

 Our first date night since 2012 this past weekend!

 My little monkey in living colour.


Being with family. Two generations affected by breast cancer.

Loving one of my prized hair!!!



Thursday, April 11, 2013

Catching a Break

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

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

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

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



Tuesday, April 9, 2013

Drawing Battle Plans

So we are a few days since the C bomb hit again and where exactly am I? Well I think I still marooned somewhere between shock and denial. I still have yet to shed a tear over the news but I am feeling a whole spectrum of emotions and feelings. Firstly I have been so tired - having nightmares most nights and waking each morning feeling so tired that I feel ill. It scares me to feel this way because it reminds me of what is to come. Secondly I have been so bloody mad. I get mad at everything - how I am too cold in the house my husband finds too warm, at the person who got stuck in the intersection and made me miss my green light and just silly things like how crap this is all going to be. I have been looking at myself alot in the mirror and looking really hard at this person I can see. I take in the length of my hair, my shapely eyebrows and long mascara extended eyelashes - all things that will disapear in a few weeks. The brightness of my face and the healthy colour of my skin - all signs of my youth which also, like all the hairs on my body will slip away. Of course none of this will be permanent - it will maybe be more like the way winter comes in and kills everything but then when spring arrives and everything comes back. But I just don´t want to do it again. I got the tshirt thank you very much and the horrific memories. And let me tell you - shaving your head once is thrilling but twice? Completely unneccesary. I have to start thinking about wigs and head scarves again. Am I going blonde? Bobbing it? Wearing more scarves this time? So many things to think about. Last time I had about two months to process and prepare for the C-spa experience and boy do you need it. Doing chemo is like going to war and you cannot go in without your arsenal. Aside from the obvious hair challenges - I need eyebrow pencils, hats, summer clothes to shield my sensitive chemo skin from the sun, hypoallergenic products, comfy clothes, and foods I hope will go down easy, And you need to get your teeth cleaned, get a manicure and pedicure (this is all due to risk of infection during treatment), and then there is the whole mental aspect of it. I feel like I was so much stronger last time and had the time and energy to do my yoga, visit my acupuncturist regularly, practice mindfulness, do physio and just relax. And I was much more naive the first time. I remember telling myself that this would be the first and last time I would ever do this. Oh how life fucks you over sometimes? Now I wasn´t sure whether being an experienced chemo veteran would help me out. Sometimes not knowing can be better and of course you are terrified but you are still optimistic and hopeful. Now I am battle worn and know what a total hellstorm this can be so I am again terrified and also know what it will be like. But like a dear friend said to me a few days ago - You need to welcome this poison into your body because it will save your life. You cannot hate it. You have to love it because it is the best weapon i have got against my enemy. Interesting concept really and I do see the point of it and the power of positive thinking. But I still secretly hate it. And the more I read about the scarier it gets. Apparently many people nickname it - "Sickplatin" which I am sure I dont need to explain further. I guess we will just need to see how I respond and if it sucks, I will do what I did last time and count out how many actual days through the whole process I will feel horrific. It was 14 last time in the first 3 months which is manageable I guess. Everything is manegeable if you break it down into itty bitty parts. Time to get just that much tougher. Bring on the poison and let´s save a life along the way. And at the end of the day, I want to do nothing more then fight like hell to be here...for a long time.

So I am still waiting for my PET scan day which is imminent. I am scared of that too and don´t want any more surprises. I have had more then enough for quite a long time thank you very much. So right now i am spending my time buying lots of toys for my daughter, enjoying our new home and trying to just be with the people I love. We are hoping to go on a holiday in the sun before my treatment begins because I need to. Delaying it a week wont kill me but not having a break and enjoying myself, might actually so we need to do it. And considering stupid cancer already caused us to cancel our Canada trip and now will exclude me from our Turkey trip in June, we need to do something fun as a family.  My doctor actually thought it was a great idea. So lets hope it happens because I am freezing! Norway has not heard that it is Spring as there is still snow on the ground and sub zero temperatures.

Love to everyone and thank you so much for holding me up when things appeared very bleak.


Friday, April 5, 2013

A Very Bad Day

“Life has many ways of testing a person's will, either by having nothing happen at all or by having everything happen all at once.” Paulo Coelho, The Winner Stands Alone

Today I had a very bad day. I really try and not use many profanities on this blog because I am a mom after all but today justifies the use of - what a fucking horrific day!!! God where do we start?

I woke up really tired, more then normal, and dragged myself out of bed to start the day. I went through the usual morning routine with my daughter and we were soon on our way to daycare. I then carried on to visit a friend. A few moments after I walked in and sat down cooing at her baby daughter, my phone rang. I handed her the baby and knew it was "the call." My doctor started the conversation in Norwegian which I was fine with. He asked me about my pain and how I was doing with it. I talked candidly and of course put a joke in here and there. Then the tone shifted suddenly. He said (in Norwegian of course) "Well the pathology results have come back and they have found more cancer cells. They found two more tumours and other additional cells attached to some structures. It means we need to do chemo." I literally lost all ability to understand Norwegian at that point in the conversation. I remember asking him "So you are completely sure I need it?" He responded yes and told me he had ordered a new PET scan for next week to rule out any new tumors. I was still oddly calm at this point but the crushing weight on my chest and accelerated pulse were noticeable only to me. He told me about the drug I would be taking (Cisplatin - AKA Platinum chemo) and its side effects. Guess what? They suck. If you go back in time to my earlier entries about my first experiences at the C-spa and how awful they were -  well it looks like I have a second reservation there. All the fun feelings of nausea, vomiting, immune suppression, kidney damage, and other warped things are part of the Platinum package folks. It was so hard to take all of the information in - impossible actually. And do you know what one of my first thoughts was? Ohmigod I am going to have to lose my hair again! I had just gotten it to a length where I could make a cute ponytail and now I would have to shave it again and spend my summer bald. Not to mention looking like a sick cancer patient. What a bummer.

He told me he would be in touch after my PET for a proper sit down and strategy meeting and that we would need to start chemo fairly quickly (i.e: 2 or so weeks from now). I actually told him "thank you" as I got off the phone. What was I really thanking him for? For confirming another nightmare?  I am sometimes just too polite - maybe it´s the Canadian in me. I felt so numb emotions, no tears, nothing. My friend was shocked when I told her what had happened as from the tone and words she heard, she thought everything was fine. But things are so unbelievaly far from fine. I am so tired and my body is so worn out. How will I get through another round of this poison hell? I know I will do it but it still sucks to the umpteenth degree. I am so angry and can´t believe how unfair all of this cancer business is. And yes I know how cancer is unfair  but this just takes the cake. It ruins everything! I feel like everytime I am dealt the worst, the cancer steals some of my hope away. I am battle worn C-veteran now, fighting it for the third time and how can I not be scared to hell when my enemy keeps coming back? I am getting so tired of it and I just want it to leave me alone. I have so many other things I want to do and my little family deserves some fun. But again our summer will be spent doing battle against the uber sized Bitch. And you know it isn´t just me suffering? Everyone in my life suffers too in their own way. I think of my beautiful daughter who will now understand much more about momma´s cancer journey. And I don´t want her to have to know about it. I don´t want her holidays ruined by my treatment or operations. I want to be free of this beast but I can´t seem to cut the chains. I really don´t know what else to say tonight as I feel so beyond exhausted and empty. What I want is a moment when all of this stops and I can forget about it. It just seems so hard to see the light right now when there are so many clouds blocking the sun.
So I am allowing myself to be as negative as I want to be today because I can. Tomorrow will be a new day and the super hero will rise again.


Wednesday, April 3, 2013

Professional in Waiting

“Patience, grasshopper," said Maia. "Good things come to those who wait."
"I always thought that was 'Good things come to those who do the wave,'" said Simon. "No wonder I've been so confused all my life.” Cassandra Clare, City of Glass

(this quote just made me smile and reminded me of the many things I misunderstood like instead of Pitch and Putt, I used to call it Pigeon Putt!)

Just a quick update from me. There is nothing to report. 

I am still sitting here in cancergatory slowly going insane. Everytime my phone rings, I jump up and a jolt shocks through my body. Only once I see the number and realise it is not the one number that I am both dreading and wanting to call, do I exhale. Yes I am going crazy but I am still functional despite my limbo state so don´t think that I am sitting under a blanket in a dark room unable to participate in day to day life. Quite the opposite really - we have settled into our new home, I am able to do alittle yoga now (which is my refuge) and also plan to return to work next week. I am still in a slight drug haze from all my nerve meds but they are proving effective with the pain so bring on the cotton wool brain! I so desperately want to move on from this experience but there is this one teeny tiny detail that needs to be checked that could have massive impacts on my life. I find it difficult to get my head back in the game in terms of work with all this unfinished business lurking around. And my mind is of course hypothesising why it is taking so long. There is no way my doctor has forgotten me so why this enormous wait? Taking away the Easter week where Norway shuts down, we are still talking over 3 weeks. I have thought that in my past experience - negative tests have come back the fastest and the longer it took, the worse it was. But here I am catastrophising with nothing real or concrete to go on. And we all know how destructive that can be.  Sometimes I want to just shut my brain down for like an hour to get a break.  I know they took so many bloody pieces of me out and have to go through it all with a fine tooth comb and I definitely wouldnt want a quick and sloppy job on this. I want them to be thorough and triple check everything. But I also just want to know. I am tired of waiting.