Cycle 2 Day 14: Silence on the Slides

I haven’t been on a water slide since Alex dragged me to a water park in the mountains of Crete many, many years ago. That day didn’t end well…. Today was a little different. We spent the morning on water slides by the beach with some grown up friends.

Not sure if you can tell from my previous posts but I’m not really into adrenaline-type activities. I am generally persuaded into it as I married an adrenaline junkie. (Although I did jump out of a plane once and he wouldn’t join me….Crazy considering I hate planes and he loves that type of thing….) I just go along for the ride. (Hmmm, interesting that’s how I would describe it given my disease, it’s location and what some of the new age thinking say about lung disorders).

My gut instinct is to scream whenever I am on a slide, ride or swing (or jumping out of a plane for that matter). But today I didn’t feel like screaming.

I screamed my lungs out down the first slide, I think out of habit. But afterwards I fell quiet and a funny thing happened. The quieter I got, the more vivid the experience became.

I felt like I was hurtling through time. Feeling every bump and turn, twist and splash. I couldn’t wait to have another go. No longer was there any noise, my noise, to distract me from enjoying and just experiencing the moment.

What a lovely life lesson, on a beautiful summer day. Thank you universe.

Now I just hope I don’t get some other disease from swallowing water slide water. No doubt there was enough chlorine to kill any living thing. Well almost.

Cycle 2 Day 7: Weekend Therapy with Martina

Sometimes when I talk to Martina I want to record our conversations. Not so that I can play it back to decipher her English (although she has been known to confuse words in the past…. like using the word “caterpillar” in a sentence instead of “catheter”) but what she says is so insightful that I don’t want to miss any of it!

She visited over the weekend and we discussed sadness. It is an emotion she enjoys exploring and letting go of. So I knew I could learn from her.

When she first arrived I felt incredibly detached. The words were mine but they were coming out of a robot. It was though I was on auto pilot. I used to feel like this a lot pre cancer. We ate dinner on the beach and something shifted. I cried. I told her I wanted all of this to be over, not in the sense that I wanted my life to be over, but the constant searching and discovery of my true self. It’s exhausting work, coupled with the extra burden of a cancer diagnosis and now a new hard-core treatment. It would be easier to go back to my old life of ignorant bliss. But she set me straight, saying all I needed was balance. She was right. With that out-of-the-way, I felt connected and the therapy session commenced!

She asked me what the main emotions I experienced last year were. She hadn’t heard me mention sadness or anger too often so she was interested. It was a hard question to answer. Early on in the year I felt lucky mostly. I was grateful, felt loved, experienced happiness, and there some moments of deep joy. I experienced contentment and a peace I’d never known and general calmness. Of course all of this was interlaced with fear. Fear of the unknown, fear of uncertainty, fear what I was feeling as false and was going to be ripped from underneath me at any moment. Fear allowed negative thoughts to dominant my mind. It was a daily battle. I was also fearful of dying and I currently remain fearful of dying of cancer. But each time I acknowledge my fears they release their stranglehold on my life slowly but surely and I can get on with just living and being.

We talked then about sadness.

With this new-found knowledge of ‘underneath anger can lie sadness’ my take on this emotion has been turned on its head a little. It has allowed a fresh perspective.  Don’t get me wrong, I think sometimes anger is just definitely plain old anger and should be treated as such, but I started to look back at a few episodes where this might not have been the case – it could have been a cover….

Just prior to my cancer diagnosis my friend died suddenly and unexpectedly. It shook me to my core. I cried for days. For weeks afterwards. I grieved in private, not letting it get too close to the surface but it ate away at me. I couldn’t rationalise it. I couldn’t understand it and I could not move forward. I didn’t really talk to any one about it in-depth. I felt myself spiraling down when the anger set in. I became angry at work, angry at home and angry at myself for not being able to become a mum. As the months past, work began to settled down, our living arrangements were about to change and I found out I was pregnant. The anger slowly disappeared but I never resolved the underlying cause, the deep sadness I felt for my friend and the sadness I felt for all that he had left behind. This is the type of emotion I feared. I had not been able to release it and by getting angry at external things in my life had allowed me to by-pass dealing with the sadness I was feeling. Only now after getting in touch with my friend’s extraordinary wife have I began to acknowledge this sadness and allow it to be a part of my life.

I explained to Martina that I was always scared of sadness because I feel like it could opening up my Pandora’s box. I could get swept in and swallowed up whole, never to return to the surface because I am not strong enough to pull myself out. I have had very little hardship in my life to date, so this sadness had never really played a big part. But I can see now that not having hardship doesn’t mean that you can’t or shouldnt experience sadness. Its essential part of the human experience just like anger, there to be ‘enjoyed’. Maybe my attitude stems from an early incident as a child. I remember Dad telling me that he only ever hit me once. I had been outside crying, screaming and stomping up and down for hours. He came out three times to ask what my problem was, could he fix it? I only increased in volume. The third time he asked me if would I like something to cry about. More screaming. So he smacked me. I stopped immediately. Shock. I think about that now. I learnt that I needed a reason to cry. And if you don’t have a good one then you can be given one.

I think of the intense moments of sadness I experienced over that last year (mostly all to do with Moses). During an acupuncture session, I had a needle go in my back near the heart meridian and I felt like my face was being ripped off. I imagined I looked like the image from Edvard Munch’s ‘The Scream’. Tears began flowing and my lungs burned. I felt like my heart had just been pulled out while still beating. It was like a scene from Indiana Jones and the Temple of Doom, but for me it felt real and raw and I actually enjoyed it. I understood what true heartache felt like and I couldn’t wait to get home to tell Mum and Leah. How times have changed… When these types of emotions hit, I find that if I am able to talk about them immediately I always feel lighter. So I am not sure what I am all that scared off…maybe it was a fear of dealing with reality, what is. Well, I am certainly better at that now.

I do know now that I feel more prepared to deal with sadness when it does come up and not sweep it under the ‘anger’ mat. Again just gotta put into practice. And I had my first opportunity over the weekend. I got angry with Alex a number of times for little things. It was mainly due to my expectations not been met (be that I did not allow sufficient time to for him to act or I did not communicate all that well what I had wanted). In any case when I had a chance to look underneath the anger I saw that I was actually sad. Sad that we seem to be no longer operating as the fine tuned, well-oiled machine (the A team) we had been for the most part of last year. We had acted as one, but this has changed lately as I have grown in dependence and Alex has needed to ensure he looks after himself as well. We finely have a moment of quiet time to discuss, maybe re-align or readjust so that we are both on the same page. Even if we are not in the same car, as along as we are travelling on the same road moving in the same direction, then I am happy (not angry :)).

The whole weekend wasn’t spent in therapy, analysing every action, thought or emotion…. We did achieve some sort of balance! The weather was magical so we pretended to audition for the next Jetstar ad on the beach, hob knobbed it at the posh bar on the hill, made time for lots of swims, SUPing, fishing trips, oh and two weddings in between. All remaining as present as possible!

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P.S I wrote this after chemo yesterday ….. So it’s a lovely jumbly mess 🙂

Cycle 2 Day 5: Anger or Sadness?

On Thursday as I was leaving yoga, my teacher said to me that underneath anger lay sadness. I hadn’t entirely understood what she meant but I nearly burst into tears, I had to catch myself from breaking down then and there. I assumed she had touched something within my subconscious that completely understood.

Anger I am familiar with. It’s my ‘go to’ emotion when things get out of control. It fits like a glove. But funnily enough it’s not something I have experienced regularly since being diagnosed. I have, however, noticed it creeping back in of late.

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After the endone episode I was pretty cranky. As always, I try and analysis the ‘why’ – ever desperate to understand, explain it, and put it in a neat little box so I can categorise it and move on. At first I blame the drug, then the chemo, then the situation. It was a combo of everything but predominately it was me trying to control a situation that did not go as planned. Regardless of the reason(s), I know that I am very good at cranky/angry. I describe myself as a moody teenager. As a 13 year old I used to slam doors when I was upset and sulk in my room. The problem was that I would keep things bottled up and never really talk about how I felt, or what I wanted. I shy away from confrontation, so generally did as my parents said. I rarely questioned – maybe I was scared??

I am far more at ease when things go as I plan. To the point of sometimes creating a false reality of what I wanted to happen in my mind. Or who I wanted to be. I feel it now when I think about it. A huge well wanting to explode in my chest. Wow. Feels good to release it.

When Mum and Dad are staying with me (which they do after chemo) I can easily slip back into that teenager’s skin. It natural and unnatural at the same time. I notice it pretty much immediately. It upsets me because it’s not me, not how I want to react and behave.

I am remembering observing this behaviour at Vipassana. In my day to day life now I am quick to acknowledge it and talk about it with those around me. I know it’s an emotion that is there to be experienced. It’s part of the human condition. It is the letting go off the emotion that I am practising on a daily basis. I am doing it for the benefit of my body and my mind.

So angry I understand, but what about this underlying sadness….. Another layer to explore?? When I think about sadness I don’t think I have ever really let this emotion into my life all that much. Over the past year I have to a certain extent, but it’s not one that I am all that familiar with and I can see now that in the past I may have covered up sadness with anger maybe as a way of coping with situations. (Secretly I find this super interesting…. I should have be a psychiatrist!)

So I am not too sure about sadness. Perhaps this will come later. For now I will remain in the moment and keep on experiencing and accept what is.

Cycle 2 Day 3: I’m High As A Kite

I was the Captain of the Starship Enterprise today. I was flying high, up in the sky.

I had to take oxycodone. And not for ‘cancer’, that pain I can normally tolerate. I had to take it for reflux. Normally I wouldn’t write about the minute details of my day, but I have been wanting to write when I am in pain, or not feeling myself to see how different (or not) my writing style is.

The chemo pre-meds tend to wear off in about 24 hours and then the onslaught begins. Yesterday I felt great, thinking it wasn’t going to get me, but by about 3pm I started to slow. I find it hard to communicate and then my tolerance of anyone or anything drops to zero very quickly. I eat, get into bed, meditate and hope that sleep comes easily. It did. But after breakfast this morning my GORD flared up. I go through a process to try and keep it under control…gaviscon, panadol, nexium, zantac. But no matter what I did the worse it got. My last resort is endone. I’ve rarely taken it. I am not a fan because I head to la-la land. I am drowsy and out of it for hours. So I tried to sit with the stabbing pain in my stomach that radiates up to my ear, I try to accept it for what it is, surrender, not get caught up (or spiral down) with my thoughts, just be in my body. I could hear Pharrell’s song Happy on repeat in my head. My toes danced about, but the pain remained. I am agitated, tense. All the things I don’t want to be. So after an hour of struggling, I took the magic little pill. And sang Fly Me to the Moon.

A calm comes over my body. Hang on, I know this feeling. It is the same sensation I experienced when I meditate. My body feels weightless, like it has sunk into the floor and no longer exists. It’s actually a lovely feeling. One that can be addictive. I can get beyond this feeling in meditation, but today I don’t want to. Today all I needed was the stillness in my body. And the drug takes care of that. In meditation I aim for stillness of the mind as well. The drug can’t take care of this. It just creates a big white fluffy cloud that I sit on and let it spin me around. It’s not stillness. It’s a calm chaos……where I am not in control. Maybe that’s a good thing? Shut down of my over active and sometimes too powerful mind.

Part of me is disappointed that I couldn’t cope with the pain and I gave in. The other half secretly enjoys the escape. I can achieve the relaxation without the meditation. Which is, I believe, key to self healing. But it’s the foggy mind that does me no good. And the aftermath, the come down when I am irritable, angry and short with people. And for self healing I need my mind, body and spirit to be in harmony.

Eh, too much thinking. Nap time.

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I am back on Earth now. I’ve re-read this post and it makes me giggle a bit. I probably could edit it, but I won’t. I’ll keep it as is because it was real. It was how I felt and how I was in that moment.

Cycle 2 Day 1: Signs, Symptoms and a Choice of Doctor

I haven’t written in a while. I felt like the chemo had stolen my brain and zapped my energy and therefore my will to write.

Maybe it was an excuse, or maybe I felt like I had to write to tell people I was ok when I wasn’t ….. Maybe it was that I had nothing to say. Or maybe it was that what I wanted to say seemed meaningless and irrelevant.

Whatever my reasons I am here, I am back, I am writing.

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This post might not be my best (and may be a bit jumbled) but I am just getting it out. Starting again and getting back into a rhythm, a routine. I will be interested to see if the chemo does effect my writing. It seems to have effected my mood that’s for sure.

Today was my first infusion of my second cycle. I have two infusions each cycle now. Two weeks on, one week off. And the last cycle hit me harder than I expected. The chemical soup swirled in my body and I experienced more down-time than I remembered. My fuse felt shorter too. I was quick to anger, especially at those I love the most (namely Alex). My reactions upset me more than I realised. I see now that it was how I used to behave, hence my sadness. But what I was proud of was my ability to observe this old behaviour and pull myself out if it just as quickly as I had sunk.

Although the Mack truck hit my entire body hard I have started to notice my disease change as well. My pain relief requirements have virtually disappeared. My cough has pretty much stopped. The uncomfort when I sleep has decreased. So I tolerated the flu-like side effects that I experienced and in the lead up to Cycle 2 I began to get excited……I am a weirdo but I am ok with that.

I also saw my oncologist for the first time since beginning the trial too.

I remember ‘interviewing’ a few oncologists when I was first diagnosed. I had an instant rapport with my oncologist. I thought it might be because he is Greek, but I soon realised it was his attitude and outlook. He is so upbeat, so determined, very optimistic and honest. Knowledgable and in touch with the latest information. Just what I want and need in a doctor.

He was an investigator for a trial I worked on 8 years earlier. I don’t remember much about the trial. What I do remember were his study coordinators telling me how he kept his patients alive for much longer than anyone else they knew. It was evident in the data too. The trial was in long-term follow up, which meant the study had essentially finished, no patients were on treatment and I was employed by the company to ensure the site was following up with the patients to determine if they were still alive. It was my job to confirm if the ‘alive’ or ‘dead’ box had been ticked correctly and that the evidence was available….. It’s how drug companies determine ‘overall survival’ of their drug and can be a critical factor in getting a product approved and (sometimes more importantly) where it is positioned in the market. My doc’s patients were alive many years after the trial had ended when most of the other hospital sites had been shut down because the patients were no longer alive.

When his name came up as a potential doctor I knew he could be the one. Some of the other doc’s we had interviewed seemed timid or were overly cautious when talking to me (maybe it was them trying to be empathetic), not knowing how to deal with me having read my notes. (I had my nurse today tell me she had a little weep when she first read my notes a year ago.) Other doctors pissed me off in different ways. One doc told me I hadn’t asked him “the big question”. I had just painfully recounted my story to him and I said what do you mean big question? He said ” well how much time do you have left”…. I crossed him of the list immediately. One said, it was irrelevant what type of tumour it was and he would treat for the location only. A bit old school thinking for my liking.

After coming off the trial, I now realise how important trust in you health care professionals can be (regardless whether it is your oncologist, GP, chiropractor or nautropath). While on the trial I saw a more junior oncologist and his manner was very different. Too caring and not direct enough. Probably perfect for some but not for me. My attitude was different when seeing him and it played a part in how I felt between visits and maybe tainted my view of the drug…..could be clutching at straws there but I thought it so I wrote it, now it’s out there.

Well, I had not planned on writing about any of this today…I wanted to write about DIS-ease. Obviously wasn’t meant to be…maybe for another post.

Cycle 1 Day 11: Naked 2015

A few days ago, Leah and I sat watching the ocean talking about our NYE plans. Menus, timings, etc etc. It was the first time in a long time that we were going to be in the same place to be able to celebrate the night together. Just before saying good bye for the day, she turned to me and said that 2015 was going to be my ‘make it or break it’ year. She really meant it and I believed her.

It got me thinking about 2014 and how Alex and I had rung in the new year. We, along with our friends Jennelle and Jayson, went to a party in the city to listen to a German DJ play some hardcore house and then watch the fireworks on a rooftop under the bridge. We walked home from Circular Quay to Potts Point. It was exactly what I had needed. I loved every minute of it. I felt alive! It was liberating, like saying F you to 2013, and was an epic feat given all that I had dealt with in the previous 15 days…… a week in hospital, 4 litres of fluid drained from one lung, lost my baby and started chemo. But this year was a different year and walking with hundreds of thousands of people up George Street was not on my list of things to do on the 31st of December. Sitting on the back of a beautiful boat was high up the list this year and lucky for me, Leah (well, her lovely Dad!) was able to deliver.

In the lead up to NYE, I had told her about the strange imagery I had seen during my meditation. I had watched an alien like creature (tall, skinny, elongated, nude, beautiful – just like in the X-files!) walk up and out of her parent’s pool. It shed something gooey and then stood on the edge looking out to the left. Weird right? But it was even weirder for me because of some of the dreams that I have been having this year. Last year. Whatever.

Most of the dreams that I recall at the moment involve water. One I remember distinctively. I was underwater in a pool. I was below all these people who were treading water and I was looking up at the soles of their feet. I could see Alex and others I knew but I did not want to go up to the surface. I was happy underneath everyone. I thought it might be that I did not want to continue to live? So I asked Zoe what she thought and she said it sounded like I was exploring my subconscious mind (which is often associated with watery dreams). I was deep down in the depths of my mind while everyone I know was on the surface (in their conscious minds) getting on with every day life. It made sense with what was going on in my waking life and I liked her explanation so I went with it.

So on NYE, feeling the boat moving gently on the water, I thought about my underwater dream, the alien ascending from the pool and my wants for the new year. Last year had been about learning. Learning about myself, my relationships, my wants and my needs. Learning to look a life from a different angle, to think more broadly and to loosen my grip.

This year was going to be all about putting into practice what I learnt. I ascended from the depth of my subconscious and I am ready to put my new found knowledge to the test. I am done with exploring. My actions need to speak louder than my words. When Leah described it as a make or break year she had nailed it.

As I left I decided I wanted to leave the remaining doubt (and therefore negativity) I still carry with me in 2014. I have done away with most of it but I need to let go of that last 10%. My head had started to pound early in the morning. For me it was a build up of all I wanted to let go of. All the remaining rubbish in my mind. By the evening of New Years Day it subsided and I felt a little lighter and clearer. Hello 2015.

Ok so how does Naked 2015 fit into this post?? During the NYE festivities Leah’s mum caught a snippet of our conversation, but she mistook ‘make it’ for ‘naked’. The midnight fireworks rang out and Naked 2015 was born. Sorry for the false advertising in the title of the blog…. If it helps I did dream of a petrol station with naked attendants filling up the cars on New Years Day…. No water involved.

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