It's 930 on Tuesday evening, and I've had a pretty good day. I slept quite deeply for parts of last night, and went with Ben and the boys on the school and work car-ride as I had an EEG scheduled for 9am-ish. I've never had an EEG before, and found the phototic stimulation (a 15x2 cm array of little whitle lights) a little unusual. I had to sit up in an armchair while a very pleasant Croatian technician took my readings, and she said I went to sleep a little by the end. The neurologist saw the EEG readout and said there were spikes in the right anterior temporal area, probably due to scarring from the previous surgery, so I've been started on Dilantin as an anticonvulsant, in addition to the Keppra that I've been taking since surgery.
I'm glad to tell you that the unbidden thoughts of self-harm that had been troubling me intermittently before the surgery on March 1st haven't returned, so I think they were probably due to the tumour growing in my right amygdala and hippocampus, rather than being related to the Keppra I'd been taking for over a year. Although the surgeon in Hobart suggested I change from Keppra to Valproate, I've been taking Keppra twice daily since the last surgery. I still have no memory of the conversation on Sunday when Ben and the boys said I could not remember having had surgery recently. I've been restarted on 3mg of Dexamethasone in the morning, on the recommendation of my medical oncologist, who I will see tomorrow for my first dose of Avastin. There's a risk of protein in the urine, so I have to take a sample in the morning before my treatment, and as far as I know, the treatment regime is still 6 IV infusions of Avastin, one every 2 weeks, for 12 weeks.
I have to see the surgeon in Melbourne on the 14th for a review, and I'll be seeing a radiation oncologist for my first session of stereotactic radiotherapy the next day. I spoke with him today, and he said just one treatment might be necessary.
Things are feeling quite odd this evening. I rearranged the furniture in the sleep-out verandah today, so that the queen-size bed is now accessible from 3 sides, with it's head under the windows to the north, a full view out the windows to the east, and easy access to the powerpoint and light on the wall to the west, and better ventilation from the heat-duct on the floor on the east. I had a relaxing rest there before and after Ben and the boys came back, even with the sound of the gardeners mowing the lawns and trimming the hedges at the front. I'm bothered by an ongoing strange taste since then, a little like the curries that Ben brought home last night, so I'll take a couple of ondansetron in case the taste is part of an aura. I don't want to have seizures again, in any form.
My body felt warm and relaxed during my afternoon nap, but my sleepy mind was troubled by the realization that I have a condition that could well lead to my demise from this life. I don't want that to happen, there are so many things I want to enjoy and achieve for many years to come. I'm going to list some of them here, in case it makes me feel better.
1. Travel with Ben and the boys, or short trips on my own: around Australia to see family and friends, and to see beautiful spots that we haven't yet visited. South east Asia, parts of India, Ladakh, Nepal, Japan, Europe, South America, parts of the USA and Canada. Some Pacific Islands, and New Zealand.
2. I'd like to do some more paintings. I enjoyed it a lot during my HSC Art in year 12, and it would be good to take up the brushes and canvas again.
3. I'd like to sing with the MSO Chorus again if they'll let me, and if I'm able. It was mind-blowing and inspiring to sing works by Beethoven, Mahler, Brahms, Schnittke, Mozart, Arvo Pärt, and others under the direction of Jonathan Grieves-Smith, with the MSO in front of us for performances.
4. catching up with family and friends who I've known over my life. I love so many of them, it would be good to see them again, to hear the stories of their lives
5. snorkelling over a coral reef. I remember spending about an hour interacting with 2 young and one parent clown-fish under their sea-anenome host at a reef off the shore of the the northernmost beach on Tioman Island on Malaysia's east coast in 1992. The babies would come out and make puffy and indignant faces at my fingers, and the mother would shepherd them back to the anenome, and would stare at me from her shelter. It was a magical time for me, I felt blessed and relaxed in nature.
6. I want to get on top of sorting out the papers on the dining table for tax and vet insurance forms, and to rearrange our many bookcases and get the boys Lego sets back into their boxes. I put 3 boxes away in wardrobes upstairs today, and realised that if I just do one or two sets a day, it should be finished in a month or so. This is a very positive realisation, because I had been feeling overwhelmed by the volume of work to be done, but I can see that if I just do one or a few tasks each day, I will eventually be on top of things, and will feel the bliss of order instead of the anxiety caused by disorganisation.
7. Time for more sleep. It's 1007pm, and I have to be up early in the morning for my April Fool's Day dose of Avastin. I hope I enjoy being out and about early in the morning as much as I did today. Seeing a variety of familiar and unfamiliar people at the hospital was enjoyable and invigorating. I'm hoping to see two friends at home on other days this week.
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.
