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, 18 March 2015

Reviewing my MRI from April 2014 in the light of my fourth craniotomy

I took this photo of my MRI in April last year because I couldn't recall seeing the olfactory sulci standing out so clearly on other scans I'd viewed in my 20-odd years of viewing brain scans. It was only after reading the MRI report that I noticed the small circular ring-enhancing lesion in the right temporal lobe, which is on the left in the image. (Remember, left = right on brain scans). The lesion is near the top of my brain stem, and appears to be the bit that the surgeon said he did not remove 2 weeks ago (he was worried that doing so might leave me paralysed because the tumour was wrapped around a blood vessel near the brain stem). I found his candid and honest expression of his reasoning to be very reassuring at the time, and it still is, but I'm developed a growing concern that this little thing might prove fatal. My surgeon and the oncologist in Melbourne were both hopeful that Avastin might be able to counteract this remaining area of tumour. I'm not sure when I'll start taking the Avastin - my scalp wounds from the surgery need to be healed by then, the scars are still a little scabby, and the area is tender. Avastin stops angiogensis (formation of new blood vessels), and may cause old tumours to die. I will need to take the Avastin every 2 weeks for 12 weeks. Ben told the radiation oncologist about the residual tumour, and he said he may be able to zap it with radiotherapy.  I'll see him tomorrow and discuss our options.

 I've recently been bothered by the thought that this thing could kill me, and dreams in which I die. In one cartoon-like dream, a guy with a cartoon-like machine-gun shot me in the chest several times, and started asking why I was still alive because he'd tried to kill me. It didn't make any sense to me at all. I don't want to die any time soon, I'm not finished with this life yet. I'm not giving up hope that I will survive for many enjoyable years ahead, but things seem very odd now that we're back home in Tasmania. I look back on my life and hope I've achieved something valuable with it, that I've contributed to society in some small way. Catching up with old friends and former colleagues and students in Melbourne reassured me that my life hasn't been entirely meaningless. I hope to create more meaning in it once I get over this sleepy phase of my post surgical recovery.

The small dark area at the bottom of this picture, on the right in the image shows cerebrospinal fluid (CSF) filling the area where the second GBM was removed from my left occipital lobe in September 2013. CSF bathes and surrounds the brain in liquid, and appears dark on MRIs because it is low in density. MRI images use pulses of magnetic resonance to spin molecules.  High-density materials like bone or white-matter tracts in the brain, appear brighter than lower density materials like csf or grey matter. The two halves of my brain in this image are not perfectly symmetrical because I probably had my head on a bit of an angle in the machine. If I had been level, then my eyeballs should have looked the same.

 I'm happy to realise that writing this post has made me feel more energised and hopeful than I did before I wrote it. More writing will happen again soon.
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