Hi. I've just had a very full and enjoyable long weekend with Ben and the boys, but one tinged with sadness at the news I will share in this blog.
I'm so sorry that my story hasn't been a simple one of diagnosis, treatment, and recovery. It seems that every time I start to get better, something new comes along to challenge me. That's the problem with reading a blog like this - it's written in real time, and the plot direction is unknown - I'm just reporting on the latest developments, which don't always take the desired direction (i.e. a happy ending).
Don't worry, I shouldn't be carking it any time soon, but cancer is a sneaky, vile, beast, and is hard to eliminate. I'm sorry if the latest developments cause you any distress - I'm still here, still functioning, still cognitively intact, still determined to get through this.
Have any of you known anyone who has had multiple gliomas, or even low-grade glioma? I've been told that "people can live for years with low-grade gliomas," but given that I've also had two grade IV gliomas, I'm feeling rather shell-shocked.
My post-treatment brain MRIs have shown three additional areas that look like tumours (the two original surgical sites were unchanged or improved - yippee, or so we thought). The specialist radiologist who reviewed my scans says the 3 new lesions are stable, which suggests low grade tumours., My oncologist said that we should leave them alone, "unless the symptoms produced by the tumours are worse than the effects of removing them." One of the tumours is in the left fronto-parietal region, about 2cm in diameter (opposite the location of the first 4cm tumour on the left), and the others are in the left and right hippocampi - the hippocampus is a structure in the temporal lobe that is necessary for forming new memories. All operable areas, and all with potential to result in significant cognitive changes if they progress.
This is all so ironic, given that my PhD was on tests of hippocampal memory function. If they took out my right hippocampus, I might have visuospatial memory loss; if they removed my left hippocampus, I would most likely have significant verbal memory problems, and if they took out both, I could end up amnesic, like the patient HM - able to remember the past, but not to learn anything new. At least it would give experimental neuropsychologists a new case to study - not that I want to be that case.
My new mission in life is to kill the cancer - and enjoy every day as much as I can.(singing "kill the cancer" in my head to the tune of Ride of the Valkyries (look up 'kill de wabbit" on youtube). I'm reading all I can about ways to destroy the cancer cells - I've been taking Valgancyclovir since late September, avoiding sugar, trying to eat a ketogenic diet - looking at supplements (so many claims, so little evidence), exercising, socialising, meditating, praying.
Any words of encouragement or experience with multiple (low grade) gliomas would be appreciated. As would your prayers or visualisations of my body becoming healthy and cancer-free.
I'm still in a state of shock, anger, and disbelief, and a strange sense of resignation that my life will continue to sail through uncharted waters. I still have hope and faith that I will get through all this. It's just hard to believe it's happening.
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.
