Wednesday, July 14, 2010

Living With Cancer

About 2 weeks ago I was diagnosed with a Glioblastoma Multiforme brain tumour - commonly known as brain cancer.

It all started around 3 months ago when I was jogging in St Leonards park, just next to North Sydney Oval one Saturday night. I had done just one lap of the oval and was doing 10 push-ups. During these push-ups I felt a strange sensation in my head, it was as if I was arguing with myself. I then stood up and almost as if I was searching for a word, and at the same time tried to verbalise it, muttered incoherent babble and collapsed. I awoke a few seconds later I now know, but because of the fall (I was standing up) and hitting my head on the ground (and probably because of the shock of what had just happened to me), I lay there on the grass hazy for around 10 minutes. After coming to my senses, I walked back to my apartment and contemplated the events that had just unfolded. Had I collapsed because of physical exertion? Am I working too hard? Was it some sort of seizure?... I was unsure, so I called my parents. Mum told me to go see a doctor, so that I did.

The next week at work I made an appointment to meet with a GP in the city, the doctor for the City Tattersalls club to be exact. I waited in the waiting room (as you do) for around 10 mins and was called in to his office. After a regular examination and the usual questions to check whether I had a seizure, such as "Did you notice that you had wet yourself?", no I replied. "Had you bitten your tongue?", no again was the answer. "Was anyone around to witness you collapse?",  Correct as he was in his diagnosis, he ruled out a seizure as I hadn't displayed any symptoms as such, and continued with his examination of me to see if he could figure out what went wrong. As I was working out, running, doing push-ups etc. my heart rate was up, so he performed some sort of test for asthma. Now I've never had breathing problems in the past, however I followed his instructions and breathed into some tube, waited a while, took a puff of an inhaler, and breathed once again into the same tube. After measuring this level of lung capacity and that level of lung capacity he noticed a change. I asked inquisitively, "Doesn't that happen to everyone?", after all, I was taking a drug into my body that clears lungs. "No, no, no", he quipped. "It seems you have a very mild form of asthma, Russell. I'll write you this prescription and take one puff a day. Come back and see me in a month if you have any more 'funny turns'", as they call it in doctor speak.

I was satisfied with this doc's prescription and did as I was told, taking one puff a day for 6 weeks. Everything was fine, until I had another seizure.

The day was Monday 30th May, I was in my apartment, and had just sat down to eat some delicious looking spaghetti bolognese that I had prepared. My roommate Kat was in the kitchen, serving her portion into a bowl, when a familiar feeling came across me. Once again, a small argument with myself started to form inside my mind. That word that I didn't know how to spell, didn't know how to pronounce, and didn't even know the name tried to come out of my mouth. I tried fighting it, but that just made it worse. "Are you alriiii....?", I heard Kat asking as I hit the deck. The next thing I remember I was being carried out of my front door on a stretcher, with the Ambo filling me in on what had just occurred. "You've just had a seizure, mate. We're taking you to Royal North Shore Hospital".

I kind of remember being taken out of the ambulance and being wheeled through the emergency doors. I was parked to one side as they had to free up a bed for me. I lay there, somewhere between waking and sleeping, confused, worried, scared. I look to my left and I see some familiar faces, my Dad, Mum and Sister, with some equally confused, worried, and scared looks on their faces. After going through a restless night sleep in ICU (Intensive Care Unit), I woke up for a full on day of examination. A CT scan was performed, an MRI scan was performed, and an EEG test was performed. I was told that I would have to spend another couple of nights in hospital, and since I wasn't in need of any intensive care (I was actually feeling and continue to feel pretty good - more on this later), there was no need for me to stay in the ICU. Upstairs I went to level 7, stroke unit.

Lying there, contemplating life, with my Dad by my side, a doctor and some other fellows walked through the door to my room. "Hi Russell, my name's Dr Herkes and I'll be your Neurologist". "We've looked over the MRI and CT images and I'm sorry to say that it appears you have a brain tumour". My immediate reaction to this news was stillness.. I didn't know what to say or how to react, I've never been told I have a brain tumour before! He continued... "There are a few options, however it seems that you'll have to have it removed. If you decide to go that path, and we highly recommend it, you'll have an excellent Neurosurgeon - Dr Jonathan Curtis". Still hasn't sunken in.. just words. "I need to sit down", said my Dad, me being aware that he had fainted when I was taken to hospital for concussion at age 7. He was fine. "Do you have any questions?", asked Dr Herkes - "Ummm no I guess not", I replied. "Ok, well I'm sorry to hit you with this news, not easy to hear I know, however just know that you're in very good hands with Dr Curtis and we're going to get through this". I like Dr Herkes, he's cool.

Enter Dr Curtis, also with his own entourage. "Hi Russell, my name's Dr Curtis, how are you feeling?". "Ahhhhhhhhhh" I felt like saying "Ok", I replied calmly. He went through some technical mumbo jumbo that I'll spare you with, the crux of it was that he handed me his card (very nice and glossy mind you), and asked if we could meet with him in his rooms (office) in Greenwich. He also informed that I should have a functional MRI scan to work out the parts of the brain that were affected by movement of right hand, left hand etc. I stayed in hospital for three nights, and was discharged on Thursday 3rd June (such a happy day!).

The next day I went to see my regular GP, Dr Barrie Davey. He called me in, and I sat down and started the story with my first seizure (at the park, the jogging experience I told you before, later realising that it was a seizure). Being the prankster Dr Davey is he jokingly said, "Don't worry buddy, it's not like it's a tumour or anything!". "Yeeeah it is", I felt so bad for him, he didn't know. I showed him my discharge summary from the hospital and he deciphered it for me (it's weird how all doctors can read each others bad hand-writing). He went through the form step-by-step and explained to me in detail what it meant. I felt really good after this consultation, just someone to explain to me in plain English what exactly was inside my head. He gave me his home number and said I can call at any time day or night.

Anyway... the next Wednesday 9th June my Dad and I travelled to see Dr Curtis at his rooms in Greenwich. He ran through the functional MRI results, and explained that the tumour was safe to operate. The way a diagnosis of tumour works, is that they need to extract a piece (biopsy) or the whole thing if safe to do so, and slice it up and look it under a microscope to understand the cells. So from MRI scans doctors can only speculate. Dr Curtis seemed like a pretty smart guy, he is after all a Neurosurgeon! He explained that there was an 85% chance that it was either a grade III or IV (IV being the worst according to the World Health Organisation's grading scale), both malignant brain tumours. "Do you have private health cover?", he asked. Damn!!! Why didn't I get off my arse and just do something about that! Anyway, it's done now, nothing I can do about it. "No, sorry, I don't". "Hmm - well you have two options. The first is that you can get it performed in the public system, and it will be free. However I can't guarantee a date and I can't guarantee that you'll get my team (anaesthetists etc.). The second option is that we go private, and you will get my full team as well as a guaranteed date". "When will that date be?", I asked, wanting to know when he was going to slice and dice me. "Let me see, I can fit you in on the 28th of June." "What exactly is the cost? (for private)", my Dad asked rightfully. "We're looking at around $30,000... most of that goes to hospital expenses. I can try and negotiate for you, however within that ballpark."

Both my Dad and I left that meeting in silence - a very humbling time indeed. After some discussion we decided to go private, and with Dr Curtis as the surgeon. I continued on communicating with work (I hadn't been back since my hospital admission on the 30th), and decided to go back to work on Tuesday 15th June. During this time I was still living in my apartment/ spending some nights at home in Pennant Hills, and was taking medication daily. (Some anti-seizure medication, some corticosteroids to reduce inflammation, and some other pill to stop a stomach ulcer - if you're still reading!!). Now this is where fate comes into my situation, and things get exciting.

Friday night, the 11th of June, a friend of my Dad's was having dinner with Dr Charlie Teo, the world famous Neurosurgeon. My Dad had told his friend of my situation, and naturally my Dad's friend shared this information with Charlie. "Here, have this number and call my registrar on Tuesday at 9:00 (Monday was public holiday), and we'll see what we can do", offered Charlie out of the goodness of his heart. My Dad told me this news on the weekend before that Tuesday, so I researched a bit about Charlie, and instantly wanted him to perform my operation. Anyway, on the Tuesday I went into work at 8 am for a meeting (so boring) and spaced out for about an hour (why was I even needed at the meeting?). My Dad calls me at 9:30 and tells me that a meeting is set up for that day, around noon, and he'll pick me up from the city and take me there (Prince of Wales Hospital in Randwick).

After showing Charlie's registrar Scott the CD that I had received from the functional MRI, he asked me why they hadn't performed one for my speech (since the area that the tumour was in is right next to the speech function of the brain) and only my feet and hand movements. That's not important. Anyway, I asked Scott when the earliest was that they could fit me in for surgery (expecting a huge waiting list for someone as prestigious as Charlie's calibre), "Tomorrow morning if you went with Charlie (private), and Thursday if you decided to go with me (public)". Huh? I thought to myself, these guys are far superior it seemed to Dr Curtis and their waiting list is much smaller. Dr Teo happened to be in that day, and so Scott called him into the room to have a look at the scans and give me my options (he also had quite an entourage, the most impressive of them all!). He laid out the pro's and con's of surgery, and after doing some research on both brain surgery and Charlie himself, I told him that I didn't want to wait, I wasn't a person to beat about the bush, and I wanted it done as soon as possible. So it was done - Charlie would perform my surgery on the 16th of June.

I arrived at the Prince of Wales Private Hospital at 6 am, signed in, and went up to my room. I changed into the surgery gown, bid farewell to my parents, and got wheeled off to the operating theatre. The anaesthetist explained the procedure of putting me under a general anaesthetic - he'd place a drip in my arm first, administering a small dose of drug that made me feel quite nice :) I was wheeled into the operating theatre, and kinda remember what it looked like. I do however remember rock and or roll playing in the background... that was my final thought. Woke up 3 hours later in recovery with a severe headache (dah), stayed there for an hour and then went back to my room.

Later on Charlie came in just as the nurse was removing the catheter from my cock (one of the weirdest sensations, it's quite a rush I suggest you try it one day), and he waited outside the curtains while I filled a bottle with a much needed piss. "How you feeling, son!?", he asked in an upbeat tone. "Yerh Alwright", I did have some numbness in the left-side of my mouth, just as they had warned me. This passed after a week though. Anywho, I stayed in hospital that night - may I say that this hospital is much better than North Shore Public, if you're ever thinking about getting brain surgery, I suggest this hospital! Charlie came in the next day and to my surprise let me go home.

The Thursday I got home I was drowsy as, still coming down off the drugs that I had stopped post-op, however the Friday was a different story. I woke up at 4 am, with a severe cold and a migraine. Vomiting and a much needed poo ensued, spending the rest of the day in bed drinking nothing but lemonade and eating nothing but paracetamol (the strongest painkiller I was allowed to take). Charlie told me that he thought the tumour was either a grade II (benign) or grade III (malignant), however couldn't be certain until the results came back from pathology with some scientific backing. These would take one week.

I called Charlie one week later on Thursday 24th June, and got some unwanted news. "Russell son, how are you! Ok, I've got some bad news and some good news. The bad news is that the tumour was a grade III, the good news is that it is surrounded by lots of low grade tumour, therefore making the diagnosis a 2.5" .The fact still remained though, I had a grade III brain tumour, which was malignant. I have cancer. Dr Teo was only looking at a pathology review, and as my medical oncologist explained to me the next day, the review was very unclear in it's summaries and Dr Helen Wheeler needed for it to be sent away for further analysis, as there may be some necrosis (grade IV) in the brain cells.

On the Wednesday of the next week (30/6) I received a call from the receptionist at the radiotherapy centre (which funnily enough was within the compound of Royal North Shore), and asked if I could come in that day to discuss with A/Prof Michael Back the further pathology analysis (I've quickly come to realise that if doctors want to see you earlier than possible, this is not a good sign for you). Michael explained very delicately that my tumour was in fact a grade IV, glioblastoma multiforme (GBM), and that I would need radiotherapy as well as chemotherapy. Both are going to be reasonably well tolerated, especially since I'm so young and healthy, and the hair loss will be minimal. The radiotherapy will start on the 28th of July and continue Monday-Friday for 6 weeks, 30 mins a day. The chemotherapy will consist of taking one tablet a day for 6 months, starting at the same time as the RT starts.

The next day, Thursday 1st July, I was travelling into the city by train and got a call on my phone from Anna. She was in the city also, submitting an art project, and checking out some art at the MCA. "Hey Russell, wanna catch up for coffee?". "Sounds good! Just heading into the city now (first time since my surgery), can you wait until 4 though?" (I had a meeting at work with my boss and a HR rep). It was good to see Anna, hadn't seen her in a while and she always gave me positive vibes. "So what you been up to?!", I asked. "Oh not too much, on holidays from today. Going to a Vipassana Course tomorrow in Blackheath. "Cool, I've always wanted to do that!". I had always wanted to do a Vipassana Course, except like everything in life, never got around to it. Lee had done one a few years ago in Blackheath and shared his benefits with me, both verbally and mentally. Eden I understand has also done a Vipassana Course when he was travelling South America last year. As we were walking to the bus stop, I had an epiphany - what's stopping me from signing up tonight and going with Anna tomorrow? I had no commitments, and even if I did, screw it, my mental purification should be way more important than any substanceless material obligations. I let Anna know my plans before we parted ways that evening, and as I was going to my old apartment in Cammeray to collect a few of my belongings and have dinner with my roommates, I would only be a short trip away from the internet. I jumped on the Vipassana website as soon as I arrived and checked it out. Success! There were male availabilities, and even though there office hours were 9:30-12 I filled out an online form anyway. To my surprise I received a call about an hour later, it was a lady from the centre asking me about my surgery, said she knew a bit about it as she used to be a registered nurse. Everything was falling into place. "Ok Russell, everything seems fine, see you tomorrow between 4:30pm and 6:30pm for registration!".

Cut to today.

Vipassana

That was the best/hardest 10 days of my life. As I'm typing this blog I'm feeling an energy that I can't describe, I can only meditate and experience it. If anyone is looking for/thinking about doing something that will change your life, and there are at least two people reading this right now who know what I'm talking about, please just take 10 days and go and do it. But understand it is no holiday - sure the scenery is beautiful, and the food/accommodation is all provided for, heck the whole 10 days are free...but, you have to work. And I mean work physically and mentally. I don't want to scare anybody, nor give false truths about what Vipassana is. After coming home this evening (a moment you don't understand how much I've been waiting for), and speaking with Mum especially about it, I've convinced her at the intellectual level. She's going to go in December as far as I know, and I couldn't be happier.

This past 10 days has been the most profound in my life. I'm not sure whether it was me getting cancer that made me get more benefit out of it, but I don't think so. It is so pure. The basic principle is based on Dhamma (Nature), and that we are all made of the same subatomic particles that are comprised of four elements (air, water, fire, and earth). Vipassana works on three principles:

1. Morality
2. Mastery of the mind - Concentration (They will teach you this)
3. Wisdom

And that's it. Vipassana is awesome. But you have to go and do a 10 day course, it will change your life. It has changed mine in the following way:

  • I have been able to confront death. By doing Vipassana one realises that everyone is dying, albeit at different speeds, but nonetheless nothing is permanent. Everything throughout nature arises, stays a while, but ultimately passes away. Once you truly understand this concept of impermanence, it will be a thing of beauty not only for you but for others.
  • I'm quitting my job tomorrow. I also understand through Vipassana that my job was simply a rat race of money money money. This is all wrong. When's the last time you saw a hearse towing a safe? Granted I haven't been working for 6 weeks, and they will completely understand, however I don't think that this matters. If I hadn't been diagnosed with cancer, I wouldn't of done this course - there's nothing I can do about anything. Which brings me to my final point;
  • Nature is constantly changing, it is so impersonal. No matter what I do at the physical level or intellectual level, nature will take it's course. There is no I, nor my, nor mine.When you can meditate understanding this - happiness will come.
Thank you for reading - it was a long journey, but we got through it in the end.

May happiness be with you all.

- Russell

14 comments:

  1. Seriously though.
    Thanks Russ.

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  2. thanks so much for this. It must be nice to get all this out there. Also, when you left for the course, it inspired me and Eden to get back into the meditation.

    tl:dr is so funny.

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  3. Man that was great! I just wanna hug you

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  4. El I just read this locoJuly 14, 2010 at 8:13 PM

    cool story bro. ;) straight up.

    brought stillness to my mind as I read.

    Also inspired me to hit up this said Vipassana. In time.

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  5. You're still 'The Heel' in Tekken, right? Otherwise Eden's going to have to come up with a new name for you...

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  6. Hamish - Once a heel, always a heel!

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  7. I've been displaying my dominance of the Tekken realm since you've been gone Russ. But there have been slanderous taunts thrown my way that The Heel is number one. Tomorrow The Master will prove this!!!

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  8. Reading this reminds me exactly those moments.. And you came out the first time of the hospital the 3rd of June*
    All my strength, even if I don't think you need that with Vipassana!

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  9. haha my bad, well spotted!

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  10. really great read mate. good to get the whole story. will be speakin with ya soon! ryan x

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  11. Patty &Dave neubertAugust 12, 2010 at 4:31 AM

    Hi Russell you should be a writer! Your description and humor is refreshing. I miss you and love you. We never know why things happen or where we will go from the experiences but the important part is to experience life and what it brings and Love all the way through it!Keep writing . Patty& Dave

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  12. Russ, thanks for sharing what you've been through over the last couple months. It is surreal how quickly things can turn, it wasn't so long ago that we were getting drenched at Origin.

    I know you'll be healthy again in no time. LIVESTRONG!

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