I am sooooooo lucky to be alive. Last night I heard two completely different GBM survivor stories.
The first story: a woman who was diagnosed 6 years ago, and who is still going strong, though with a bald patch on her head. Ben and Nathaniel don't agree, but I quite like having very short hair, so if radiation leaves me with bald patches, no biggie. I'll be the shaved-headed Amazon of Launceston (sans bow and arrow. My only weapon is love).
The second story: a man in his middle years, head aches, mild visual changes, GBM in the basal ganglia (deep midbrain structures with reverently beautiful names like the thalamus, hypothalamus, caudate nucleus, globus pallidus). On of my first neuropsychology lecturers, Michael Saling, had a medical lecturer who told them it was "Tiger country. You cannot cross it with impunity." Surgery was attempted to debulk the lesion, there was a haemhorrage, the patient ended up in ICU. I don't know the outcome, or when or where it happened. But that's the kind of GBM that makes them so deadly.
My night nurse (where do they keep finding all these angels? I wonder if it's in their position description) said that men get GBMS more than women, and that their outcomes are often worse. Don't know why. She said that some patients do just give up in the face of the diagnosis, agreed that the costs in the US probably add to the mortatlity rates, but said that we do everything we can in Australia.
Biziarre thing happening in my right hemifeld as I type right now - a little man is singing and danding aroudn in a slow circle. Has a good sense of rhythm! I'm focussing on looking on my left hemifield and trusting my intact right touch-typing skills - it seems to be working well. Now the flesh-coloured figure has his hands behind his head, is scratching his chin, feeling his tie - stroking his nose - and disappears if I look directly at it. Mmm, interesting, there's a flesh-coloured chair over there, is seems my visual cortex was trying to make sense of missing data.
It's been fitful night for sleeping. I can see things when my eyes are closed - not the hypnogogic hallucinations brought on by last week's sleep deprivation. This time its my brain trying to fill in missing details. I'm finding it ok to ignore it while I'm typing here (thank goodness for this little macbook air that Ben bought me yesterday, I can feel where my keys belong on the keys) (good lord! is that Richard Nixon lying on my right arm? and someone walking to the window and back? It looks more like rubbery figrures of Prince charles and Lady Di in riding clothes - I never knew my visual cortex had such a sense of humour. Diana is reading my blog and talking to others - I wish they'd just keep still, I have serious words to write here!
So yes, fitful sleep. Midly febrile (37.6) and hypotesive (89/70) at 930. Slept 930-1130, then wide awake, had a good talk to night angel nurse, after even better talk to a friend in Sydney who I could see was awake and on Facebook! Slept again 1-2, after taking digesic and temazepam, bolt upright again. Felt like the room was moving, like part of me was getting up and riding a donkey down the room. Slept again 3-5ish, but then bolt upright again, feeling like I was jiggling in bed. I wasn't.
I've been for a walk up and down the hall. Legs feel strong, but gait feels unsteady. Definitiely the Wrong Trousers, and they've gone wrong. My angel has written me down to see the physio today (right pheriperal companions doing a slow boogie dance while I write. At least they're happy).
Will I have to deal with this visual disturbance for a long time?
who knows? It's only early days yet, though I'm not impressed with what looks like a giant turtle head or Dr Seuss creature where my right arm is typing. It's probably going to be temporary, if there was a bad field loss, I'd not be able to see anything at all on the right side of space. Now it ranges from looking like a broken ipad screen through to these fully formed 3D illusion...
Sleep is coming back, time to grab my pillows and jump through the window Wish me luck in Neverland
PS if you haven't already, please subscribe to blog updates via email, there's a widget on the side of the blog. That way, you'll get my posts straight in your inbox, and I won't feel the need to share links to each new post on Facebook. I will be busy for the next few months, and this will allow us to keep in touch without me having to announce new blog posts on Facebook, which I'd rather not use as a town-crier facility for life's dramas. I want a quiet, healthy, happy, life from now on
A blog started in 2013 to inform family and friends about my treatment and progress for early breast cancer. Then I went and got two brain tumours,,both GBMs, completely unrelated to the breast cancer, so the blog continues.
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.
