Radiotherapy Treatment #5: August

August is my least favourite month of the year. 

It shouldn’t be. 

It’s the month both my parents celebrate their birthday’s. The month Alex’s dad was born and also the month his wise and beautiful Buba came into this world. 

But more recently it became the month I lost both my maternal grandparents and being from the Southern Hemisphere, it is the last month of winter. A season I am not that fond of now that I seriously lack my own winter coat. 

Winter coat aside, the main reason I am not a fan of August, is because of a dream (or maybe it was a nightmare) I had about 5 years ago. In 2010 we were living in our tiny, mouldy one bedroom basement flat in Maida Vale. For us it was just perfect. The location was central and the neighbourhood was great, friends and pubs nearby. But one morning in early January that year I woke in a lather of sweat only to recall a dream I had from the hours before. I was Angelina Jolie (she has been a dream theme that has continued during my disease in many different forms). 

The dream was very clear and simple. I had a similar tattoo to the one that she has on her arm listing out the dates, longitude and longtitude points for each of the places that her children were born. Mine was slightly different. I had only one date that I remembered. The others had been scribbled out. It was my date of death. 13 August 2013. 

I kept this to myself for a few years only telling a few people mainly because I thought I was crazy and I didn’t want to think about it. But as the date approached the more and more apprehensive I became about it and for my family. I changed dates of flights, appointments and importantly (in my eyes) the date of my minor surgery I was scheduled to have ‘clean my tubes’ out. After three years of no success, I bit the bullet decided I would see an actual gynaecologist about my inability to fall pregnant. The GPs up til now had said we only have half the picture with what’s going on with Alex, so it was time to have my side investigated. I would need to have a more invasive test. For me I feel like this is when my clinical trial experiment all started…. All scheduled on the date of my death???? Well I fixed/controlled that and changed the date quick smart! The OCD me!! I changed the date, making sure it was the day before allowing the 13th to be a recovery day, which suited me fine. I would be safely wrapped in bed not able to go anywhere….It was a definately a forced change in my trajectory as Zoe would say. And, in my mind I haven’t worked out if I was not meant to (or ready) to go down that motherhood path (which began within 3weeks of the surgery) which set me travelling down this harsher more savage road that has irreversibly changed mine and those around me paths forever. I not sure it matters, just that I left it and a new road opened and I took it. Open and willing. Trying to do so with open arms and a newly found heart and soul. I still feel lucky…

So August isn’t my favourite, but I know just a tick away Spring is due and I get to remember the most magicial week of my life. I know this is not living mindfully and it a cycle I will eventully break. My today is all about making new wonderful memories in the moment. My brother is home from o/s and I missed him dearly, we are ‘housesittying’ in another beachside suburb which is new and exciting, and it is Alex and mines 5th year wedding anniversary. And although each year is different and more complex than the next I wouldn’t change what we have created for anything. Our path is hard, but we don’t do normal. That’s not the reason why we are together. That’s not the couple we are. I wouldn’t have it any other way. 

  
Love you poopie xx

Radiotherapy Treatment #2: A New Visualisation 

I get to wear my mask for the first time today as they zap my brain! I’m kinda excited….what a sicko. My Dad is coming with me. I think he might be excited too. 

I read a book when I was first diagnosed. It’s the thought that counts. By David Hamilton. It among a number of books and people, helped set my path and allow positivity into my life. 

I had started reading his second book. How your mind can heal your body. But I couldn’t get into it. Hamilton makes it clear from the get go that this is just his theory, he could be wrong and that there isn’t that much science behind it. I needed more at the time and so put it away. Since the surgery it has become a bit of a night-time read for me followed by an episode or two of Veep. 

Last night I saw a new visualisation. I don’t think Jabba the Hutt is going to cut it with these new lesions and I’ve been ‘seeing’ this for a while in my meditations, contemplations and general daydreams….but last night I heard music, I saw myself ‘in it’, and it felt more real. I hadn’t taken my full gamut of pain meds so I don’t think I was hallucinating either. 

*Cue Nina Simone Music*

  It’s a new dawn. 

  It’s a new day. 

  It’s a neeew life for me. 

And no, I am not taking inspiration from The Bacherlorette ad, although I sometimes wished I blogged about that show instead of my actual life…but I am strutting along some city street. There could be some slow motion action too. 

So I am dressed as a tarted-up scientist. Tight white lab coat, slick back hair, dark rimmed frames, Nana Merle’s diamond earrings, shiny lips, air-brushed skin, fabulous black heels. We have a photo in our study that is quite close to what I look like (minus the lab coat and frames). The photo was taken in a photo booth in Marylebone Station one cold winter morning as I needed it for a monthly rail pass I just bought. I took the remaining photos home to show Alex, cause I didn’t think it looked like me. He asked who it was, ’cause it certainly wasn’t the woman who left the house each morning’ and he wasn’t convinced it was the woman he had recently married. The photo travelled home with us because we always wonder who she was….I guess now we know. 

  
So I’m confidently strutting the streets in my fabulous get-up to get into my body (the lab)….. which is where all the glamour ends, reality begins and my actual visualisation starts.

When I was a bench scientist, my main role was to grow bucket loads of decidual endothetial cells in petri dishes. These cells line the many blood vessels that are found in the juncture between the uterus and the placenta during pregnancy (have I lost you…too much information??). 

The main problem growing these cells was that the petri dish could become contaminated with another cell type called fibroblasts. They are a type of connective tissue and they quickly became my arch nemesis. Overnight, the fibroblast could multiple and cover the whole dish leaving only a few endothelial cells left to replicate, rendering the sample useless for future experiments. 

One way to manage the growth of the fibroblasts was to lug a whole microscope into a laminar flow hood and then carefully suck out the dodgy cells with a long glass pippette. (OK, definately lost the non-scientists! Maybe the photo will help) 

 It meant that the right cells, the endothelial cells, had a chance to grow and fill the dish, ready to harvest and freeze for future experiments. 

So that’s what I’ve started imagining in my body. A glass suction pippette sucking out the various areas of ‘contamination’. 

So I’M FEELING GOOD!!!!

Cycle 1 Day 1: Time To Go Again

I start on treatment again today. I had a long talk with my oncologist about my pain, about sweating, about the headaches. I get the feeling he is just trying to control it now. Not get rid of it. Alex said that’s his job. Getting rid of it is up to me. Sometimes I am blown away by his insight. It’s true.

While we were in Fiji I was having a whinge to Alex about his behaviour. Everything in excess, everything fast. Do, do, do! He reverts to teenage Alex when he is on the island. It is something I was struggling with. I couldn’t keep up.  But I was surprised when he shared with me a small piece of his heart. He said that nothing in his life had ever felt more real, given him more focus or been more important. Some times I wish I felt this way. 

My biopsy results showed nothing new. Except a more confused histology diagnosis, which doesn’t really match my history. More testing needs to be done. And so the plan is too start this chemo for two cycles and then see…

Why do I feel so flat!??? This is the longest I’ve not been on treatment. My tumour has obviously flared during that time. When I think about ‘no more options’, I always come back to ‘well I’ve always got me’. It is an option, but today I think back over the past several weeks of ‘no’ treatment and I wonder about me. I wonder about relying just on me, my body and my mind.  Sometimes I am weak. Sometimes I play the victim. Sometimes the pain takes hold and I just can’t. Maybe it’s post holiday blues…. I am missing the warmth and sunshine of Fiji. 

———

Getting hooked up now and I already feel better, stronger. Ready to go once again. 

  

Cycle 9 Day 16: Obama, Attenborough and …. Galettis?¬†

I went back to my parents this week. To give Alex a break, but also to give myself one. Vas came home too. It was like I was a teenager again. 

On Tuesday evening, as a family, we watched Barack interview David Attenborough. I think I smiled the entire length of the program. Not because of what was said, but how it was said. 

  

At 89, Sir David Attenborough has not lost the enthusiasm, passion, fascination with the natural world. He is in awe of it still. Every word emanates from deep within his being. He felt it and he meant it. They discussed the changes to the planet Sir David had witnessed during his lifetime and solutions to the problems we face today and into the future. 

My Dad also likes to solve the world’s problems through ‘healthy discussion’. He is a different sort of passionate to Sir David though. Not as refined, and somewhat more intense, but just as heartfelt and spirited when it comes to conversation. Over the dining table, he can construct an intelligent argument on how best to deal with the Greek debt crisis or enable free healthcare to all Americans or even improving the taxation system in Australia. 

I have been listening to this talk all my life. What he has to say is logical, in line with my own values and ideas. I normally agree. But of late I find myself disagreeing for the sake of it. His solutions are big picture and for some reason it doesn’t sit well with me. I stop him part way through a rant to ask ‘but what are you as an individual going to do to solve this problem?’ 

His answer is simple. He is an educator and talking is his contribution to get people engaged and motivated. To get them thinking and doing. Words will lead to action. 

So what’s my issue with it?? Why when I listen now do I feel like I’m on a Miss Universe pageant, where the words to questions like ‘how would you end world poverty?’ are meaningless….

I realised while at home that my question to him is actually a question to myself. “What are you going to do as an individual?” I can talk, write and think all I want about what I am going to do to rid my body of cancer. But am I actually going to do it? 

The last two weeks have been tough. I stopped doing. I am naturally a thinker. I am not a do-er. But since my diagnosis, I am now uncomfortable not doing (does that sentence even make sense?!). It now feels unnatural not to do. Or more to the point, it feels unnatural to think too much without any action behind it. For me (once again) it comes down to balance. I was definately out of balance.

After my scan yesterday I started doing  again. I stopped holding my breath, stopped being paralysed by the fear. I stopped thinking too much. I took myself to an evening yoga class. Got myself some different pain medication instead of relying on someone else to get it. I watched the full moon rise across the ocean in the cold wind. I felt alive again. Let’s hope I can maintain this balance over the weekend while I await my results…

Cycle 9 Day Whatever: Verbal Vomitting

I’m in a rut.

I feel like I’m losing my willpower.

I don’t sleep, I sweat. My reliance on pain relief through out the day and night has grown exponentially. I need Alex’s help to get undressed. I am irritable and lethargic.  

I am self-sabotaging. I can barely meditate for more than ten minutes at a time. I stopped drinking my alkaline water. I started to eat meat. I drown bread in olive and salt. I skip lunch. I have even started to eat chocolate. I have stopped taking my supplements. Drinking my juices. Walking the block or the beach. I’ve become lazy, looking for escapes.

This morning I don’t care if I live or die. I don’t feel the need to be here for others anymore. That gives me a sense of peace. I have to search to find reasons for me alone to be here. I can’t find any. 

Today I am having a bad day. I am entitled. This week I am scheduled for a scan. And not the normal CT. I am getting another PET scan to see which parts of the tumour are active and if it has spread. It is ruining my plans for the week. I am annoyed. 

I think I am scared, in fact I know I am. But I am also angry. I cant articulate what it is I am angry or frustrated about… Part of me wants to know, the other doesn’t care (or is pretending not to care).

Wow. Yuck. Got it out… Not sure I’ll post this. Maybe I’ll keep it in draft. It’s not very positive. Think it will upset a few ppl. Namely my Mum. I’ll warn her. 

Should I care? It’s a snapshot in time, that is my reality for the moment. And a moment is all it is. That moment will pass. It almost has, having written this down. Like I needed to have a verbal vomit. I made space. I got rid of those thoughts and can replace them with brighter, lighter, more positive ones. Ones that normally fill my headspace. 

It’s time to move my body. Eat. Re-hydrate. Relax. 

Cycle 9 Day 5: Scientists v Healers

We often think of healers as differing from scientists such as yourself, do you have any thoughts on how to reconcile these things?

This was one of the questions I was ask ‘on set’ last week during the filming. I thought it was a beautiful question, one that I had never contemplated previously, but one that is so relevant to me now in so many ways.

I had wanted to provide an eloquent and articulate response, that would be inspired, captive the audience and hopefully open up new speaking opportunities….. Instead I gave staccato sentences, that didn’t flow and made me look a little stupid. I was sent the questions beforehand but I had only glanced over them, not wanting to come across like my responses had been scripted…. Lesson learned for next time!

I’ve had a bit more time to think about it.

I would never had even considered these two professions in the same sentence before cancer, but I now believe they share many similarities and I think the notion of ‘belief’ is the common thread between both.

In my scientific mind, a healer believes in the impossible. It’s a belief without restrictions, requirements or caveats. It is often an experience that is individual and unquie. One that can not be replicated. It involves intuition, emotion and a spiritual connection. In a scientist’s world there are rules and methods. Evidence is key, so is reproducibility. It can sometimes be narrow and black and white, but deep down a scientist must also believe in the impossible. If they did not believe in the first instance then why persist with experiments, trials and theories. Why dedicate their life works to it? They work methodically and logically to try and prove what was previously thought of as impossible. They are intellectual dreamers who think outside of the box. Sometimes risking their careers and reputations for their beliefs. Sometimes shunned by their own community for being too out-there, too forward thinking, too radical. But isn’t it this radical thinking that enables us to take those leaps and bounds to advance our knowledge…..

So are they one and the same? Where does that leave me? How do I now fit in? How do I reconcile it all? And does it really matter?

I do my best to balance both sides without living in internal turmoil. Cause in some ways this is what cancer has given me. I can’t disregard all that I know as a scientist. I travelled this path and gathered this information for a reason. So maybe it is my calling to be a better scientist, to be a braver scientist, to push the boundaries, be radical in my thinking. I am reminded everyday that the human body is a miraculous organism. It’s designed to heal or we would not make it out of bed in the morning. So I already believe in the possibility. I just need to hold it. I need to forget the doubt, that creeps in and deviates me from my path, that accepts laziness as the norm and that gets in the way of my dreams.

So can this scientist believe in miracles? In my heart, I now would say yes. And my head is slowly coming on board. After all, one generations miracles are another’s scientific fact. I’m going to get in ahead of my generation and just believe.