I've been feeling pretty good the last few days. It helps that the weather's been sunny, and that I've had Ben and the boys home for company, but I've managed to get through two days without napping, and have eaten well without any nausea or appetite loss as well. We stopped using Disulfirim (Antabuse) because it may have been causing the nausea. I was taking it because in experimental studies it causes GBM cells to absorb copper, which can help kill them, though I'm not sure the evidence for efficacy in humans is there yet. It's part of the "cocktail" approach to GBMs, where people take a whole range of treatments that might help control the spread and progression of the cancer. The problem with this approach is not knowing which treatments are effective or not, and that one ends up getting sick of taking multiple tablets each day. Keeping track of everything can almost become a full-time occupation.
I won't write for long tonight, as it's 920pm and my jaw is getting that slightly numb, slightly twitchy feeling that I get if I'm overtired (the same feeling that preceded my two seizures, only without the aura). I'll take half a clonazepam as a precaution. I don't want to have another seizure, it will delay my return to driving from January until later next year. I think you used to have to wait 6 months after a seizure until you could drive again, but I've heard that it might now be 12 months.
I saw the optometrist yesterday because I lost my multifocal glasses in Queensland last school holidays, and because my vision feels blurry. He said my vision is almost 20/20, but that I'm more short-sighted in my right eye than I used to be, and that the feeling of blurriness is due to "posterior crystalline lens opacity" - i.e., the beginnings of cataracts. Bugger. I'm only 47 - he said it's not unusual for people to start experiencing this at my age. I asked if using sunglasses helps prevent cataracts, he said the evidence is mixed. No wonder it feels like I'm looking at things through a tissue at times. He recommended getting glasses for clearer distance vision, if I want them, but thought I should not get multifocals again, as I was hardly using them.
We took the boys for a bike ride down at Royal Park this morning. It was a glorious sunny morning with lots of happy walkers and their dogs enjoying the warmth. The tide was lower than I've seen it in ages, and the silt that remained in the river was fairly stinky. We had lunch at Mee Wah, for want of not knowing a better chinese restaurant that was open, and the boys both did a good job with their chopsticks and table manners. They were even engaging in decent conversation, which was better than yesterday, when they strenuously objected to being driven to Evandale for dessert. When I was their age, I used to nag mum and dad to take us out for drives, because I hated being stuck in the hoist, and I loved seeing the countryside and spending time talking to my parents. Dad didn't mind, he loved going for drives, and he always had interesting stories to tell about the different towns and people who lived there. Our kids are happy to stay home all weekend, they're too comfortable with their electronic amusements, and they're missing out on a diversity of experiences as a result. I felt exhilarated and alive again from the drive down to Perth and then across to Evandale, where we found a great cafe in the old Municipal Hall, called Ingleside Bakery. It's a grand old building with a very high ceiling and fancy Victorian cornices, fireplace, and ceiling rose. The colour scheme was dramatic - olive green on the cornices and ceiling rose, and a plum-like purple either side of the chimney, and a more neutral cream on the other walls which served as a backdrop to a good selection of paintings by local artists. There was a wide range of local foods and gift items for sale, and it reminded me of the kind of places I've loved going to before I got ill - quaint country towns, eclectic cafes and gift shops, if Tasssie had a bigger population, Evandale could be like Daylesford in Victoria, or Montville/Maleny in Queensland, or Amherst in Massachusetts. To be fair, Tasmania has a decent number of pretty country towns with quaint old buildings, but it is rare for any of them to have more than one or two good places to eat. There just aren't enough local customers to sustain them.
I had a baked blackberry cheesecake, a sweet indulgence that hopefully won't encourage glucose-promoted growth in any remaining GBM cells. I've been avoiding sugar and fructose for nearly a year now, in an attempt to starve the little blighters. I've felt so good the last few days, it was almost like my pre-GBM recovery from the breast cancer treatment, when I imagined a future with a very low chance of breast cancer recurrence. It's annoying that my jaw gets twitchy, and that I stumble over my words at times - it makes me realise I may always have to be vigilant for signs that unwanted things are growing in my brain. I must be due for another MRI soon. I'll have to check.
Walking down at the park today, I noticed a number of young women striding out in summery dresses, and I wondered if the tendency of young, fertile women to wear revealing clothes in sunny spring weather is associated with hormonally-driven mating behaviours, and if a similar thing is responsible for the desire to embark on spring-cleaning when the weather starts to improve - a kind of nest-building activity? I haven't noticed older women stripping off their warm outer layers with such wanton abandon as the young, and I remember how it felt to be a teenager and young woman in the springtime - there was almost a compulsion to wear light and subtly revealing clothes, seen en masse in the boarding house, where we would sit outside in the sun with our skirts subtly hitched up, less subtly so if there were any boys around. There could be an observational study in this for someone.
One last thing before I go - I asked Ben if he could tell me why I feel reluctant to go to the conference this year if I'm not presenting a paper. He thinks it's because I'm worried about having to tell multiple people how I'm doing, which would be more traumatic than presenting a paper on lessons I've learned from being a patient. I think he's probably right. The problem with having been open and honest with my colleagues about my health issues is that it might be uncomfortable to attend a conference with those people. Giving my presentation would have allowed me to decide on what I wanted people to know, and would have allowed me to illustrate that I'm doing pretty well for someone who has had two brain tumours removed, not to mention hopefully imparting some insights that might be helpful to the clinical practice of others. Not having a role at the conference would make me feel lost. I can't recall attending the conference without a defined role, either as a committee member, organiser, or presenter. It would be strange to attend and listen to presentations. I don't really want to do that - I have no need for PD points, and conferences were exhausting enough before I had cancer - I just want to go and see old friends and colleagues again. I miss them.
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.
