Cycle 1 Day 9: Hello, Chemo. My Old Friend

Chemo, Christmas, Chemo! I survived them all.

It was just as I remember. You feel like a Mack truck has hit you. And then for good measure it reverses back over you (slowly) to be sure that every muscle, bone, tendon and cell was equally effected. It only lasts about 8 hours, so I really can’t complain.

I think back to a year ago, embarking on a similar treatment regimen and the path that I’ve taken to get where I am now. I think about my attitude and how I tackled each new unknown. It reminded me of my first attempt at writing.

I was in partial remission, my hair was starting to grow back, and I was in a good place. Zoe had asked if I would write a piece for her blog about my relationship with chemo. I re-read that post today. It was a bit a brain dump and it’s not going to win any literary awards but I’ll share it with you anyway…

Chemo – the Elixir of Life

I might sound strange, but I always look forward to my next cycle of chemo.

The day before I started my first chemotherapy treatment, my boss called to wish me luck. I was still in a state of shock from my diagnosis, trying to deal with the loss of my unborn child, preparing to lose my hair, and potentially my life. I had no idea what to expect, however, deep down I knew that the therapy was essential for my healing to begin and I wanted to start immediately.

My boss told me a story of her experience as a caregiver to her husband, who had fought and beat cancer 20 years earlier. He was incredibly determined and decided to work throughout his treatment. He would even drive himself to chemo and then on to work after his infusion finished. After a few cycles, he had remarked to her that he was surprised at how quickly you could be infused with ‘poison’. She quickly replied ‘it is not a poison, it is the elixir of life.’ It set my attitude towards my treatment and is a story I share with anyone who is about to embark on the same journey.

The notion of chemo as ‘toxic’ or a ‘poison’ is something that had never really occurred to me. I guess it is because I am comfortable around medication, not because I was a sickly child or had chronic illness, but because I am a research scientist and it my job to ensure that the drugs which make it to market are safe and effective. I also know that every drug has side effects. I collect and report these adverse side effects on a daily basis. Everything from aspirin to statins have some sort of side effect on the human body. I know I will experience a variety of side effects with each chemo treatment, so I prepare as best I can for every cycle. We try and have a meal plan with nourishing foods gentle on my stomach for the days following treatment, a hard drive full of TV shows and movies ready for when I do not want to get out of bed, a pill box of prophylaxis medication on stand-by to take if the nausea, insomnia or constipation set in.

My initial chemotherapy cocktail was designed to kill all fast growing cells, so I looked for the signs. When the lining of my mouth became rough and sloughed off within the days after treatment I knew the chemo was doing its job. When my hair began to fall out I knew the drug was starting to accumulate in my body, again doing its job. I’ve been able to foster a positive relationship with the side effects, knowing that the medication is doing what is intended to do.

The chemo I am currently taking is designed to slow the growth of the cancerous cells and the side effects are not as severe. For me this has allowed me some time, breathing space if you will, to get the other areas of my life back in alignment and to ensure that my mind, body and spirit are working in harmony so that natural healing can begin.

Soon after writing this my tumour changed shape for the first time and I my resilience was put to the test. Re-reading this I don’t think I would change any of what I wrote. My attitude certainly hasn’t changed.

And for the record, I had a wonderful Xmas. A quick swim in the pool in the morning, followed by a Masterchef challenge for lunch, an impromptu run fully clothed in the pouring rain and then a movie in the early evening surrounded by those I love the most. A perfect day.

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Characters in my Life – Zoe

I met Zoe about a year ago. My neighbour had put together a list of local holistic providers (organic food, accupuncturist, yoga and meditation specialist, GPs) as we had just moved back into town after being away for 5 years. At the bottom of the A4 page was a simple statement ‘And for a healing touch call Zoe Alexander’

I checked out the website link and made a call. It is not something I would have done for myself in the past. It was like I was pushed….I didn’t follow up on any of the other items on my neighbours list. I had no idea what to expect. When we spoke I managed to hold it together over the phone just long enough to tell her my story. I asked if she could help with Reiki. She said that there was a lot going on with me and that we should talk first before making a plan. She asked me if I was resilient. I said yes, half believing my response.

I think about that person now. Who I was. I never felt broken by my situation but I certainly was a very fragile shell of a human being, empty inside. If I got one more hit, I might have shattered to pieces. This is going to sound weird, but I was going be re-born (not in a religious sort of way) and I knew she was the person to help make me whole again.

We started having weekly sessions. I called it reiki to begin with but have since come to learn that what we do is actually called psycho-energetic therapy. I love it. For me it is just the right mix of spirituality and science.

I wrote her a Xmas card this week (again, something I normally don’t do). I had bought her a present, but it just felt shallow and somewhat ridiculous given the nature of our relationship (?) to not write a letter of some sorts.

Here it is below. Seems letter sharing is a theme at the moment… Maybe I should create a hashtag #shareyourtherapistxmasletters

My Christmas Card to Zoe

Dearest Zoe,

Sometimes I don’t feel like your client or patient. I feel like your friend. Maybe it’s because you know me in a way that no one else does. Maybe it’s because I can be honest with you without judgement. Maybe it’s because you show empathy and encouragement when I need it. Or give me a kick up the arse when I have lost the plot. I guess it’s all that I require in friendship and I get to practise being a good friend (and the real me) when I’m with you.

You have helped me to re-build my life, start facing my fears, and looking within for my true self. You have taught me not to be afraid of information, but to seek it out and put my ‘clever’ mind to use. You have helped open my eyes to a new world. One that is bright and beautiful. One that I can see, smell, taste, touch and hear more clearly than ever before. One that I am grateful to be a part of and want to continue to live in.

You have challenged me in your gentle and giggly way so that each week I learn something new but uniquely relevant to my situation. I am often in awe at your ability to tailor our time with just enough science for me to be able to remain totally engaged and amazed. Without even knowing what’s happened in my week or what’s on my list of things to discuss with you! (Well maybe you do know….maybe you have help from Spirit 🙂 !!!) I know I am a work in progress, but every week I find that I understand myself just that little bit better.

I feel more whole than ever before and you have helped in this transformation. I am glad the universe aligned to enable us to meet. Without you, the path I have been travelling would have been slower and much windier. I am glad you are here to help me navigate it in your special ‘Zoe’ way.

Although, I see you as my healer, I also see you as the woman who showed me that I have the most powerful tool within myself to self-heal. I am the ‘God’ if you will. I can be the Creator (and the Destroyer) of my life. I have the power within if I believe.

Thank you for always reminding me to believe and trust in myself.

Lots of Love and Merry Christmas xxx

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Follow Up (FU) Day 4

I haven’t been surfing again but I definitely have been riding waves of emotion over the past few days!

There has been so much running through my mind, I wanted to escape it.

Yesterday my beautiful yoga teacher asked me what I wanted from our session. I told her I wanted calmness for my body. A lot of people around me were angry about my results, but it’s one emotion I rarely feel towards my situation. I described feeling agitated. Like arrows were being shot across my chest. This way and that. My energy was all over the place.

I know she worked hard to help me and normally I feel incredibly centred once I leave. But yesterday I didn’t. I had coughed a lot during the session and it reminded me of pre-diagnosis. Maybe I was scared? I wasn’t sure. Or maybe I was back to where I started from a year ago. I tried meditating after and it still didn’t help. I cried to Martina, to my Mum. Still nothing could shake my agitation.

I had a breathing class later in the afternoon. During one of the breathing sets I heard myself scream silently I WANT MY OLD LIFE BACK! Woah, where did that come from??

I imagined friends leaving our house, getting in the car after visiting and being able to return to normality. Their own little world, with their own little problems. I had done that in the past, I was ignorant. I wanted it back, but knew I couldn’t. Zoe and I discussed the day earlier, how I often run away from my reality and I don’t want to take ownership. To be the boss, to drive the bus. If I am to beat the odds, then this is what I need to do.

I went to pick up Alex from work and I caught a glimpse of myself in the rear view mirror. I heard the chatter in my mind and I yelled at myself. I was thinking about Alex having to set up a Tinder profile (hilarious, but self defeatist) so I let myself have it.

NO, YOU ARENT DYING EARLY. You will die when you are good and ready. So get out of this funk and stop feeling sorry for yourself.

I asked Alex to drive me to Moses Mountain (it’s a headland near our house where we said goodbye to The baby on my due date). Not sure why I just did. I got out of the car and felt the well of emotion bubble up. I reached the cliff edge and cried. Alex asked me what I was thinking of and I couldn’t respond. I wasn’t sure. But a calm came over me and I knew. I was letting go of my old life. A life I loved, I created and I was proud of. I was grieving the loss of this life and the loss of myself in a way. My tears were my grief. I stood up and sucked in the salt air deeply. (Luckily Alex was there because I am sure the local residents were ready to call the cops). I was going to leave the remnants of that life behind on Moses Mountain.

In my meditation that evening I imagined my skin blistering. What came through was new, strong, powerful. It felt real. It felt true.

Today I decided to go ahead with the new chemo next week instead of waiting. I feel I am in the right place mentally to dive in without doubt and fear weighing me down and with a new found layer of strength I never knew existed.

Wish me luck!

EOT: End of Treatment Visit

My tumour has changed shaped, gotten a little bigger and sprouted two new lesions. The Drs decided instead of staying on the experimental treatment it was best to stop and change strategies (like my body is some sort of computer war game…)

I felt numb. But super calm when they told me the news. So was Alex. We are getting pretty good at this.

I asked for them to cut out my lung. He said they would if they could. His reasons were stats based. I might try and find someone to do it anyway…. I am sure Lenni would know someone!

They have suggested chemo again. I’ve decided that this time instead of being scared and desperately dive into another therapy, I will wait, breathe and really accept this change in treatment.

It’s likely I will start the new chemo in Jan.

So here we go again!

Cycle 4 Day 20: My Fan Mail to Katy Perry

WARNING: This post contains adult themes and real emotion.

Today is my scan and tomorrow I find out the results, so I have had a lot on my mind. One thing I had started to wonder about is if I’ve become desensitised to my own story. I have felt detached when writing or talking about it, like it’s someone else’s life.

On Friday night I thought long and hard about it. And then I cried because it is real, it is mine. Shit. I cried because of Moses. I cried because I didn’t know what they had done with his body. I cried to Alex that they put him the bin. Oh God! Poor Moses. In my first job I visited the maternity ward often to collect tissue samples and placentas. I know what goes on.

I lost him a year ago today. I remember it vividly. I started to relive it. I remember being woken at 3am to have something inserted to soften my cervix. I remember crying, and the nurse whispering in my ear that she would say a little prayer for me and my baby. I remember Alex having to get into my bed to comfort me and calm me. I remember my obstetrician asking if I had any questions. I wanted to ask if he could tell me if it was a boy or girl. Instead I ask what will happen with him. He said he would be taken to pathology. I think he lied, but can’t be sure. It didn’t make sense. He was perfect in every way. It was me who was diseased. Why would they need to test him? I remember being wheeled to theatre and watching the lights on the ceiling go by, like I was in a movie. Like it was happening to someone else. Maybe it was my way of coping?

But then I remember the song that was on repeat in my head that morning. My mood lifted and I was able to fall asleep. I slept deeply and peacefully. I woke without the need to take and pain relief.

As a teenager I would often wake with a song in my head. They would set the tone of my day. “We all live in a yellow submarine”, or “Don’t blame it on the sunshine”. I hear ‘only the good die young’ a lot at the moment, a reminder to be bad perhaps??
On the day of my termination all I heard was a few lines from Katy Perry’s song, Roar. I heard the words over and over. Getting louder and louder as I was taken into the theatre. I don’t even like Katy Perry, but on this day I guess it was what I needed to hear. It has since become a little bit of an anthem for me. I play it on the drive to the hospital for every infusion, scan and appointment. I learnt all the words and I sing them out loud. I wrote the lyrics on my mirror at home so I can be reminded that I am strong and brave and courageous. Like the lion. Get ready to hear me roar.

I decided to write Katy Perry a letter….

Dear Katy Perry,

I don’t know you. You don’t know me.
I didn’t really know about your music until about a year ago when one of your songs (actually it was just a few lines) was on repeat in my head during one of the hardest days of my life.

A year ago I lost someone (something?) precious to me. I won’t bore you with the details, but as I was being wheeled into the operating theatre all I could hear in my head was ‘Cause I am a champion and you’re gonna hear me roar’. It grew in intensity, reaching fever pitch so that it was the only thing I could hear as I waited for the anaesthetic to knock me out.

Since then I learnt the rest of the words. I play your song on the way to chemo sessions, to scans, doctors appointments or when I am feeling defeated.

It has become the anthem of my life.

Whatever you experienced to write those lyrics i am grateful. It reminds me that I am strong and powerful. It reminds me I am not a victim and I am lucky to be alive. People ask me where does your strength come from. I say don’t know. It just comes from within. It’s innate. It’s deep down, it’s real, it’s roar.

Cycle 4 Day 18: One Year On

Last year the 13th of December was a Friday. Unlucky for some. For me it was the start of something new. I was given my diagnosis and was discharged from hospital. Today I wanted to write something profound, but I can’t find the words. I think I’ll let the pictures do the talking instead.

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Here is the current me. I feel a little bit like Kim Kardashian posting a selfie….. Oh well, today cancer can kiss my ass!

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Cycle 4 Day 15: A Clinical Trial – Would you participate?

I always thought, if asked, that I would particpate in a clinical trial. I wonder how many feel the same way?

I remember my first job (which was at the hopsital where I am currently being treated) having to dontate a vial or two of my blood every other week to the PhD students in my department who needed monocytes for their experiments. I had no issue with it, I volunteered willingly. In fact I would ask to see what my cells looked like under the microscope once they had been isolated and stained. Or wanting to know how they behaved during the experiment and whether or not it was expected for ‘normal’ cells.

Even when, a few years later, I went to work for the ‘dark side’ at a pharmaceutical company, my opinion and thoughts on being a clinical trial patient did not change. I know that ‘Big Pharma’ gets a bad wrap in the press sometimes for its practices and ethics. I remember in my first year in industry hearing one company employee calling the department I worked for the ‘Sales Prevention Department’, so I understood where this public mentality came from. But my job, my responsibility was to ensure that the rights of trial patients were being upheld and to check that the data that was being collected was accurate and correct regardless of profit margins or sales forecasts. My role was not to see and talk to patients to check on their well being, there are other external mechanisms indepentant to the company and the doctor in place for that. My job was to audit the doctors, their process, practices and the information they were providing the company. You were trained to look for oddities, anomalies in the data. You become a little bit like a detecitve trying to verify that what is in front of you is fact. That it actually occured they way it was recorded. I digress…

I had no hestiation to say ‘yes’ to the current trial I am on. But the reasons I said yes are very different to the altruistic views I held prior to my diagnosis. I always believed I would particpate in a trial because I would be contributing to the greater knowledge of that disease, whatever disease that may be. But when it came to the reality, I said yes for more selfish reasons. 

I remembered an oncology drug I worked on that had an incredible result for one woman with ovarian cancer. It was advanced and she had failed many other standard treatments. But this drug, the one I was working on, did wonders. I remember seeing the before and after scans. It had virtually disappeared overnight. I’m not even sure if that product made it to market but it worked for that one woman and for her that was all that mattered.This is how I think now in terms of the clinical trial I am on. Yes, the sceince behind the molecule makes sense. Yes, the tumour biomarker says I am a match to the drug. And yes, my results will go into the collective datasets for the greater ‘good’ and understanding of this disease, but I am doing this for myself and no one else. I am n=1.

As with all things in my life, my ingrained patterns of behaviour have sowed a small seed of doubt about the trial. My doubts might stem from a different place than those who might be scared of big pharma or don’t agree with their practices. Perhaps it’s my body, and the pain which has slowly appeared over the past few months. Or maybe it is that I always assumed that if I was on a trial it would be too late for me. It seems strange of thinking given the number of drugs I have work on over the years that have been of great benefit to patients with diseases like HIV, Rheumatoid Arthritis, Crohn’s and cancer…. Maybe it’s because these drugs don’t cure as such. They turn the diseases in chronic illness. Manageable and no longer life threatening. The perfect scenario for the drug company, I hear some say. I do believe that cancer is on it’s way to becoming a ‘chronic illness’ that is managed and not life-ending. We may not be there yet, but I think we are close. Is that a bad thing?? Not in my eyes as a cancer patient. I am starting to babble now….

Anyways for me this is just another pathway to re-write, they keep coming up and I keep knocking them off. One thought pattern at a time.

So…

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