Cycle 2 Day 15: Office Wars

Stale air, unnatural lighting and dull muted tones. This was my first impression when I walked into the office for the first time since being diagnosed. Some things had changed, most had stayed the same. It was me who was different. No surprise there given all I’ve been through. And I don’t want offend anyone when I say this but the office felt lifeless, uninspired and stagnant.

It’s probably because my current ‘office’ is wonderfully bright, airy and inviting. It is my home. It feels alive. From my balcony table (which sometimes doubles as my office desk) you can hear the hustle and bustle in the beachside village, children playing in the park, and cockatoos squawking at each other in the banksia trees. If the wind direction is right, the salty ocean air drifts through the house and the afternoon sun warms the living area so that you nap without even knowing it.

My first impressions effected how I felt, how I behaved. I was amused by how i still shift between who I was before and who I am now. Some moments I play the court jester, acting out what everyone (including myself) wants to see – smiling, happy me, looking remarkably healthy. Or being ever so agreeable to the detriment of my own health. But then I catch myself and remember to be honest with myself and others, to be present and conscious in the moment, to be real, like I do in my “new” life.

Talk about exhausting….. Coupled with my fearful flight, minimal meditation and an excursion from my regular diet, my body aches. My friend describes the pain she feels in her inflamed hip as ‘I know I have a hip’. This rings true for me today. I am very aware that I have a right lung!

What this trip has shown me is how much I love the home Alex and I (and our team) have created. My healing space. It is were I can be comfortable, honest and free. It’s where I need to be.

Although it was great to see, hug, touch and laugh with those that I love in Melbourne there’s no place like my little piece of paradise. Just another reason why I am so lucky and always grateful.

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Cycle 1 Day 20: Everyone gets a baby and I get cancer

The last of our child-less friends of “child-bearing potential” told us they were expecting yesterday. It was early morning and Alex was barely awake. I turned to him angry and said ‘everyone gets a baby and all I get is cancer!’. Trying to comfort me, he said ‘we have each other’. Feeling a tantrum coming on I asked him but what do I get. He said he was so lucky to have me and blah, blah, blah, so I yelled ‘BUT WHAT DO I GET!?’

I got up and headed to the beach to breathe, cry, meditate, be. I caught myself in the tantrum. I was watching myself and it was hilarious. I couldn’t help but laugh. I was like a spoilt child having a meltdown in a supermarket aisle. Legs and arms flailing about, hair a tangled mess, eyes red from the tears. Should I stop? No, I knew I wasn’t done with the emotion so I dove back in and allowed whatever was inside to come on out. It didn’t take all that long and I was able to calm down by deeply breathing in the salty air and watching the hypnotic motion of the ocean waves.

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I have never really felt this was unfair until today. Most of my emotions/reactions have been ‘it’s so fucking sad’ not ‘why me’. I am glad I got it out. I wrote to my friend to congratulate her, but that I couldn’t skype her until I was ready and could be truly happy for her. I didn’t want to pretend. She understood.

For me it was also a bit of a relief. I had been waiting to hear this news for some time. I feel I can get on with it now. This is the last one. It will only be second pregnancies from here on in and no one cares about the second child….. Haha Just Kidding!!!!

Cycle 2 Day 10: Anoula v QF439

I was at a seminar recently and the presenter was discussing her burnout after commuting to Asia for work for several years. People in the audience laughed (the way she described it was pretty funny), but I understood exactly what she meant. In my role as a Clinical Research Associate (CRA) I was expected to be travelling at least 60% of the time. I would be visiting hospitals all over the country each week checking that they were following the trial guidelines and ensuring that patients and data were being protected and collected appropriately. I mostly did a daily commute to Melbourne, or Brisbane, or Perth. Or to the US or EU for a few days for training or meetings. I once flew to Germany for less than 24hours. I didn’t even leave the airport.

I have done this for the past ten years. So it might surprise you to know I hate flying. I mean HATE flying. It’s an anxiety like no other. I feel it in my body. The rise of adrenaline is steep and prolonged. It is sustained until I return home. I know it is not good for me. To cope with this over the years I have created a routine of OCD activities that I tick off my list.

For my flight today (the first since I was diagnosed) I discussed with Zoe how to approach it. Should I take a valium to ensure that I was calm and my body would not experience the adrenal surge that I believe to be damaging to my lungs or would I attack my fear head on and the opposite of my routine to try and break the strangle hold?

Ok Qantas flight 439, bring it on! Head on it is!!

I wore a dress for starters, that’s a no-no in my eyes. Not sure why, but pants normally a must. Weird I know, but they get worse…. I stepped onto the plane with my left foot instead of right. (I picked this habit up after Alex and I got married in Greece. The priest insisted we step into the church with our right foot.) Add it to the list!
During take-off I checked the time whilst the seat belt sign was still on and I turned the page of the in-flight magazine. My hair normally has to be out (not in a ponytail) which was a little difficult seeing I have a pixie cut! Crazy stuff huh? I thought it had kept me safe all these years.

You would think it would be easy, given the state of my current condition. But not so. I had a mini meltdown when checking in. I found out Alex and I couldn’t sit together. He calmly sorted it out. I was a little disappointed in myself because I believe lung disease is all about not going with the flow of life. It showed me that I am still trying desperately, irrationally trying to take control. But that’s ok, this is a small first step. I have a few days now to prepare for the flight home with even more determination.

I woke up this am with no pain. I am currently at 30 000 ft and I can feel every cancer cell having a great old time. Right, time to meditate to see if I can kick the parasympathetic nervous system into gear and stop those adrenal glands from firing!!

Cycle 1 Day 6: The Many Versions of Me

I have had many images of the new me during mediation. This was the first time I recognized a new voice.

I felt like it was the ‘real me’. Her voice was calm and considered. Her tone was even, firm but not loud or angry. Her thoughts were logical, not negative or fearful. It was the perfect balance, peaceful and at ease. It was me.

Anoula 2.0 was a happy-go lucky version of my former self. She strutted along a garden path wearing a green dress with her short funky hair and bright red lipstick. I imagined this when I was without hair and still receiving the heavy doses of chemo. I can hear music playing and I feel the warmth of sunshine on my skin. I see her so clearly, even now.

This bright scene then gave way to an image of a primitive female emerging from a rock like egg covered in moss. I had short sliver grey hair and enormous eyes and pixie like ears. I felt like I wasn’t human, like a Japanese cartoon character or from Avatar (even though I have never seen the movie). It was misty and dark. And I was like a cave woman. It was fitting that I should see this when I did, as a few weeks later my scans showed that my treatment had stopped working and I would need to go back on the heavy chemo again. I see it as my subconscious mind telling me that I was going to need to get back to basics and have my survival instincts kick in again.

Version 3.0 has not been entirely clear to me yet. I have imagined a woman with althetic arms running down the beach, she is wearing a pink cap/visor but I cant see her face.

The voice today tells me to keep on looking for her. Which I plan to do.

Cycle 1 Day 3: The Voices Revisited

Yesterday’s mediation yelling match got me thinking (haha what a surprise!).

My lesson is not to be scared of the information for this trial or from information in general at my disease. l had started to worry (I am starting to see a theme….) whether or not the new trial drug would work because I am on monotherapy, which means I am only the trial drug. I had seen that other companies trialing similar drugs in combination with other chemotherapies. For the past week I had struggled with this notion until my brother read a certain part of the informed consent out to me reminding me how the drug worked . My immune cell count last week had been so low that I would not have been allowed to enter the trial. Given this information, I wondered why companies would even trial this new drug with standard chemotherapy, whose main job is to wipe our fast dividing cells (of which your immune cells are one).

Only sitting here writing this now am I able to formulate my thoughts. I am n=1. I am an individual. I can not be lumped in with the majority of patients. My disease is rare so it is unlikely that any of the other 399 patients in the trial actually have my type of tumour. It is highly likely that no one with my tumour type has been tested with this new drug at all. My oncologist does not know how it will respond as he has never treated this type of tumour before. He has not known how any of the treatments will respond. It is all trial and error until we find something that works.

I think this was my push to do something and take ownership, use what skills/knowledge I have to understand as best I can. I had been to see Zoe earlier in the day and at the moment I really haven’t taken control of my ‘Recovery Bus’ and maybe this is me pushing pushing pushing to take hold of the wheel and steer it in the direction I want to go. It is up to me after all. I can take which ever route I choose.

Later I chatted with my acupuncturist about my thought patterns and she said that there is a difference with a critical mind and a negative mind. Maybe that’s what it is. Maybe I need to listen to the questions it is asking and not be so afraid. It is asking for a reason and I should use the knowledge I have to find the answers. That’s what I like to do, isn’t it? I know this is what Zoe has been trying to get me to do since I began seeing her. I keep resisting. Ok, I’ll dig deep and listen next time. Or at least I will re read this and remember to be brave.