Background and overview

I learnt more about the health system from being an inpatient than I had in 20 years of working as a neuropsychologist. I was unexpectedly diagnosed with two brain tumours on 4/9/13. They turned out to be grade IV Gliomas (glioblastoma multiforme (GBM)). After removal of the right parietal and left occipital tumours, I received the standard treatment under the Stupp protocol (combined Temozolamide (TMZ) and conformal radiotherapy 5 days/week for 6 weeks), but the TMZ had to be ceased after 5 weeks because I had started to develop pancytopenia, where more than one of my blood counts had begun to drop. By Christmas 2013, I had become anaemic and needed a couple of blood transfusions. I ended up in hospital for 3 weeks of the 2014 new year after experiencing my first seizure (suggestive of a right temporal lobe focus) on 31/12/13). They were so worried about my bone marrow, they did a biopsy. Luckily, it was all clear of any nasty disorders. It had just been suppressed by the TMZ My blood counts slowly returned to normal with daily injections of GCSF, which stimulate bone marrow function, for several months. For 17 months I was doing better each day, without any physical impairments or major cognitive problems A third brain tumour was found in the right temporal lobe on 2/1/15, and removed 6/1/15, only to reappear on 17/2/15 after I started to feel vague symptoms at the end of 2014. I had my 4th round of brain surgery on 1/3/15, followed by stereotaxic radio surgery of a residual, inoperable, tumour, on 17/4/15. I've been feeling like my old self again since that highly precise form of radiotherapy, and it feels fabulous.

My way of coping.
I choose to live in hope that everything will work out for the best. I've learnt that even though things are sometimes unpleasant, life and love go on forever. I put my faith in the life force that created and unites us all in love, across all time, space, and dimensions. I refuse to succumb to fear, which is an invention of our imaginations. There are an infinite number of things to fear, both in this world an in our imaginations, and most of them never eventuate. I choose not to dwell on them, and to focus instead on counting my many blessings, current and past, and to have faith and hope that if I look after the present moment, the future will look after itself.

If you're reading, and haven't been in touch, please don't be shy, send me a brief private message using the contact form on the right. It's nice to know who's out there. Blogging can leave me feeling a little isolated at times (I used to have recurrent dreams of being out on a limb over a canyon, or of starting to strip off in a crowded waiting room). Your emails are appreciated, although I can't necessarily answer all of them.


Wednesday, 25 February 2015

Sleep, drumming, headaches, and anticipating surgery

I slept deeply through most of the day on Tuesday, I was just so tired, I hoped that it would help me feel more energised. It's probably good that I did sleep so much. We went to a Taiko drumming class in the evening, and it was far more physical than I imagined it would be. It reminded me of my old karate days - I trained in Seido Karate from 1992-1994 in Carlton under Senpai Darrel Dodds, and at the main school in Geelong under Sensei Melvyn Nelis. I enjoyed it so much, I used to drive to Geelong a couple of times a week, particularly for the weekend classes. I reached 3rd kyu (3 below black belt), but gave it up because I had just started work as a neuropsychologist at the North Eastern Metropolitan Psychiatric Service (NEMPS), aka Mont Park, Plenty, and Larundel psychiatric hospitals in Bundoora. I had just completed data collection for my PhD, and was meant to be writing it up, but I met Ben that year, and found that I couldn't dedicate myself to karate, work, study, and a new romance. Also, I didn't like kumite (sparring) at the level I had reached. It was supposed to be light contact sparring, not full contact, and if your opponent made contact with you, you were supposed to acknowledge it. There was one woman I sparred who was older and a higher grade than me, but she never acknowledged it when I made contact with her, and she nearly winded me a couple of times (not light or controlled contact at all). This made me very frustrated, and we weren't meant to get frustrated during sparring, so I gave up attending training, and only missed the friends i had made and the discipline and meditativeness of kata (choreographed sequences of movements), After looking at YouTube clips of Taiko drumming, I could see that it is a very physical and very Japanese art form, and that doing it would make us all much fitter (drummers are meant to stand in horse or straddle stance (kiba dachi) and raise their hands high above their heads. It made me feel quite dizzy at one stage, and I had to sit down. African drumming might be more suited to my temperament. I crave peaceful music at the moment, not militaristic themes. 
After all that. I slept like a log last night, and woke after dreaming that a handsome and enigmatic dark-haired man had come and healed me. That has got to be good, doesn't it? While my new neurosurgeon is dark-haired and handsome, it wasn't him. 

I'm still finding the latest turn of events hard to believe, particularly the tumour growing back only 6 weeks after it was removed, and I think that it sucks that I have to have yet another GA (I've lost count in the last 2 years), more time in hospital (I've had over 160 days since January 31st, 2013), and that I'm heading for my fourth craniotomy. But I'm doing it to survive. I don't want to die anytime soon. Still too many important and wonderful things to do in this life, and having surgery is necessary in order to achieve it.
Good to know that my neurosurgeon's colleagues and an oncologist saw and discussed my scans and agreed on the proposed surgical plan.
Wise people say that everything is an illusion, that nothing is real... I certainly feel like I've been thrown into an alternate dimension, or that everything I thought was real or existed has been questioned. Trying to perceive it as if I'm swimming in a beautiful tropical pool, though I don't know how i got here, or where it is. The water gets in my eyes and makes it hard to see things clearly, but I feel safe, at peace, and loved by many souls. It's a nuisance that my old life keeps reminding me of unfinished tasks and projects, though I know now that many of them are trivial and unimportant. My dreams will still be there to fulfil after this next round of surgery. MRI 5 pm Friday, admission 7am Monday, Surgery 2 hours later. An overseas holiday would be far more enticing, though I'm so grateful for our health system that makes this kind of treatment easier to access than in other countries. In the USA, some people don't get surgery because they don't have health insurance. Go, Obamacare!.

I've been feeling a sense of dread or foreboding in the past day or so, but it has dissolved tonight when I remembered that I had the same feeling when I was heading to hospital to be induced when David was 10 days past his due date, and when I was told about the first two brain tumours (although they thought they might be breast mets or an abscess at that stage). I pulled through both events perfectly well, and while an emergency caesarean section wasn't what we'd hoped for, David and I both survived the experience. The pathology on the first two tumours was possibly the worst it could have been, but I've defied the odds, and survived 17 months after the first diagnosis, with minimal cognitive and physical side effects. 

My head has been aching a bit more lately, but paracetamol usually helps fix it. The surgeon didn't think I needed to start taking dexamethasone when I saw him last week, the swelling wasn't too bad on the scans. We bumped into a group of school parents at a cafe at lunch time, and even though most of their faces looked familiar, I couldn't remember their names. It looks like i might have to get used to asking people to remind me of their names. It's been a growing issue over the past year (though I'm only realising it now), and I used to have a remarkably good ability to match names and faces. I could even put names to faces from school photos taken in the 1970s and 80s. It will be interesting to see if that long-term memory for names and faces is affected by my surgery. I found a website that talked about changes after right temporal lobe damage, and it mentioned visual memory, prosody (intonation during speech), a tendency to be long-winded (I love language so much, I've always been prone to possibly overdoing it), and possibly difficulties with pitch and rhythm. I hope not. I want to sing in a choir again, but I want to live and love others most of all.

Time for sleep again now. We have to rise early in order to collect David from his year 7 camp tomorrow, so that we can fly to Melbourne in the afternoon. I've booked a motel on Sydney Road in Coburg, which will be fairly convenient in many ways. It has a pool (the weather will be hot), it's close to trams and trains, and a multitude of eating options. I'm hoping we'll be able to see lots of friends and family before my craniotomy on Monday morning. Love and light to all of you, and thanks for the love, prayers and positive energy that you are sending my way.
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