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.


Tuesday, 5 May 2015

To blog or not to blog, that is the question

I had the MRI yesterday, on a blustery, rainy, wintery day. The results confirmed my suspicions, and demonstrate why neuropsychology was developed by people like Alexander Luria and others in the days before brain scans like CT & MRI were available. Namely, to identify and possibly localise brain dysfuntion.

I have spoken to my mother, cousin, and a close friend about the results. It's 1.36 am, so I'll share an email I sent to a dear friend on the other side of the world, then I'll pray, meditate, and go back to sleep.. 

 I would rather tell people about this in person, than share it here, but that'snot really possible. I don't know everyone who is reading this in person, and  calling all the people i do know would take a few days.
Please take a seat and some time to read. The news isn't terrible, but it's not great either.

Sadly, yesterday's MRI confirmed mysuspicions  about something happening in my left hemisphere, and revealed new areas of gliosis in the left anterior mesial temporal lobe (amygdala, hippocampus), suggesting why I've been having some unexpected  and (to me) inexplicable episodes of episodic memory loss. 

I've just woken briefly after going to bed early, and still feel a sense of shock and disbelief. I went through the scans with the radiologist yesterday, and then with my oncologist. They agreed that a conservative approach to treatment would be best, and the radiation oncologist in Melbourne said he would examine the scans and may be able to give me more stereotactic radiosurgery as early as later this week or early next week.
I thought briefly about surgical options, and how having a left anterior temporal lobectomy could leave me with severe new learning problems, like H.M. I hope the radiosurgery will protect me from that outcome. I still want to write my memoirs.

Oh  my dear family and friends, i wish I could be sitting with you and sharing this, not writing on my iPhone in the middle of the night. I'm feelng shocked, incomprehending, and heartbroken. I dont know why this is happening to me, yet I know that trying to discover a reason is futile. I have to focus on being grateful that it isn't far, far worse, and that treatment   options are available.

I'll be looking very hard for clinical trials that may let me pay for treatment.
 
It is late and I must sleep. Your prayers and support are deeply appreciated.

Posted by at