Neuroboob: a neuropsychologist's experience of being a patient (breast cancer and brain tumours).: Improvements on scans

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.

Thursday, 6 February 2014

Improvements on scans

Good news:
"When compared directly with the 2012-12-30 scans, there appears to be slight reduction in the bulky of the rim enhancement in the occipital lesion, and possible slight reduction in bulk of the rim/ring enhancement in the right frontal lesion. No new lesions/satellite lesions identified"

Great news, in other words. The areas of enhancement in the December, that could have been new tumour growth, but might have just been post surgical and radiation scarring and vasculitic change, seem to have shrunk. I was tempted to take photos of all the scans from the screens this morning, but restricted mysedl to this one, simply because I can't recall seeing olfactory bulbs before (they're the two finger-like projections going up to the eyes (at the top of the scan).
The left occipital lesion is nice and small (the little black hole at the bottom right (left=right on brain scans), and there was hardly any ring enhancement (a white area around the blackness) on other images of the same area. The right parietal lesion isn't too big either, it possibly extends down to the temporal lobe (visible as the small white circle with a black centre just next to the long white branching bits on the left). I resisted the temptation to take more photos, I find it a little confronting to see images of lesions in my brain), and really only took this one because the olfactory bulbs looked so clear.. It was good to see very little oedema (swelling), no midline shift, and normal ventricles. So I just have to keep taking valcyclovir, master the ketogenic diet for cancer, exercise regularly, and keep thinking positive thoughts. This old brain may just get me through to 100 after all.