After Christmas, My old housemate, Debbie, came over with her partner and their son, Jasper, who is 6 months younger than Nathaniel. The three boys got on very well together, and had a ball playing outside every day at a holiday park called Gumleaves, just south of Swansea, on Tasmania's East coast. It was our first holiday away with another family, and I hope we'll have many more, it was very relaxing and the kids hardly played with their iPads at all. David even read an entire book in two days.
I had some good walks and tried to eat well, but fell off the no carbs, no sugar wagon a little bit, and was troubled by right-sided headaches and the need to sleep for 3-4 hours each day, even without much physical exertion beforehand. Looking back over my recent blog posts, and thinking about things again, I realise that I can't remember the last time I felt refreshed on waking. I often wake up feeling the need to go to the loo, but my body is so deeply asleep, I wonder if I'm dead or alive. The need to pee suggests that I'm probably alive, which is a relief, but I had a disturbing dream last week in which I was dead.
I think my intuition has been trying to tell me something, which was verified by the results of the latest MRI scans from this afternoon.
I'm sorry to be sharing the news this way. I've vowed not to do it by mass email or text message, or on Facebook. I would prefer to be making personalised emails and phone calls, but I'm saving that for my closest family and friends. It looks like I'll be having surgery in Hobart on Wednesday, with the same surgeon I had before. At least I'm not as scared of having surgery as I was the first time, I've even wondered if I can have prophylactic mastectomy at the same time, but that's probably the least of my worries.
The little area of enhancement in the right hippocampus that was visible in April last year, which wasn't evident in July, but had reappeared, only smaller, in October, has come back. It's now about 2-3cm long, 1-2 cm thick, and is causing oedema (swelling) in the right temporal lobe, with a bit of compression of the medulla and mild effacement of the lateral ventricle. I'd asked the radiographer if I could view the scans with the radiologist, who was happy to do it, though he apologised that I was the second Dr Bardenhagen he'd had to give bad news to. The first was Marita, when they found a metastasis In her liver. I reassured him that I've already survived well beyond predictions for someone with multifocal GBMs, and that if I was going to have a new tumour, then the right hippocampus is better than the left. Our extensive pre and postoperative neuropsychological assessments of patients with surgery for temporal lobe epilepsy showed poorer cognitive outcomes for removal of the left hippocampus,with changes in verbal memory and confrontational naming. People rarely suffered major impairments in memory or language after right temporal lobectomy, apart from one poor girl who had a GBM in her right temporal lobe. Her visual memory was very poor. All this may explain why I haven't been able to improve on the visual memory and attention tasks on lumosity, despite lots of practice, and why my Lumosity attention and processing speed scores have been dropping off a bit lately. Before Christmas, I mentioned my lumosity changes to my radiation oncologist, and wondered if all his brain tumour patients think about this. He laughed and said it was only his neuropsychologist brain tumour patient who did. I told him I planned to use lumosity as a way of tracking my abilities over time, and he laughed again, saying I was the only patient who thought of such things.
It's a bloody nuisance to have this happen, when I've been doing so well, and when I've only just been cleared to drive again. I've only driven twice since the OT gave me the all clear, both times were nerve-wreaking. But not being able to drive is the least of my troubles.
The radiographer spotted something that looked like a meningioma in my left temporal lobe. A neurosurgical friend has looked at my scans and said it could be a meningioma, that it seems to arise from the dura mater. Heaven knows why it's happened. He said it's possible for GBMs to spread through the CSF, which bathes the entire brain in fluid, so maybe the little devils are taking a fluid way of getting around. The right temporal lobe lesion seems to arise from the lateral ventricle, as did the left occipital tumour in 2013.
I'm trying not to think "I'm stuffed", but things are looking a little grim.
We told David and Nathaniel that I'll need to have surgery again. David cried a lot, and was angry, Nathaniel was more quiet. Tonight he told me he wants to bea doctor when he grows up and to find a cure for brain cancer. Bless his dear heart.
We told them that we always knew there was a chance that it would come back, and that we hadn't told them before now because we didn't want them to worry unnecessarily. We explained that I've already survived 13 months longer than 50% of people who get this terrible disease, and that we hope that I'll continue to do well after we deal with this new challenge. We told them that there are a number of stories of long term survivors on the internet, including Cheryl Brogan, Ben Willams, and Sarah Malamai. Cheryl was diagnosed in 2005, has had surgery for several recurrences, and is still hiking and camping with her sons and climbing mountains. If they, and others, have survived, then why can't I? I'm never going to give up fighting.
The new tumour could have been in a much worse position. On the left, I'd be having language and verbal memory problems. I'd rather not have it at all, of course, but I have to be grateful that it's operable and not in a worse position. I'm also grateful that we've found it before it got any bigger, and that we have some steroid (dexamethasone) from last time which I've already started to reduce the swelling and the headache. I probably won't be able to have chemo again, after the last lot made my pancytopenic (all my blood counts dropped perilously low, and they were worried I might have had a bone marrow disorder). It still remains to be seen if I will be able to have radiotherapy for the new tumour. I need to ring my neurosurgeon's rooms at 4 pm on Monday, and he's ordered the fluorescing dye (gliolan) for surgery on Wednesday. I'd rather have it out sooner, but my oncologist said it's important to have it done optimally, and trying to have the surgery in Melbourne or Sydney wouldn't necessarily get it done any sooner, or better.
At least I don't have to worry about my income protection insurer getting impatient about me returning to work. Even if I recover well from this new development, I don't know if returning to work is a good idea. I'll focus on my family and be a writer and an artist instead.
We might even move back to Melbourne, where there are more services, more neurosurgeons, specialist neuro oncologists, and friends and family. I don't want to move away from this town that I love, or my mother, who will be 84 in June, but we need to do whatever is best for my health. The opportunity for getting involved in clinical trials is greater in Melbourne.
Again, I'm sorry I can't call or email you individually, but I'm thinking of you, and welcome your phone calls,emails, or prayers to the deity of your choice. Ben will also benefit from your support.
I don't know why this is happening to me. Maybe I committed multiple atrocities in a past life, maybe I haven't learnt enough yet from the challenges I've already faced. I told my oncologist that I'm thinking of converting to Judaism, which would make me a Buddhist-Christian Jew, and might be the source of several more jokes (a Buddhist,a Christian, and a Jew walked into a bar, but they were all the same body. The bartender said "oh, you're that Tasmanian who had three heads!" Boom boom!?!?)
I must try to sleep now, the Dex is already keeping me awake. However, as a final word for those of you unfamiliar with reading brain scans, structures on the left appear on the right, and vice versa. Dark areas represent less dense tissue, or fluid, or swelling. Bright areas represent dense tissue, like bone,blood vessels, or the vascular edge of a tumour. Tumours can look bright in some scans because they take up the contrast medium. The large white area in the lower left of the third image represents swelling. No wonder my head was aching and I was getting tired.
Blessings and love to all of you. May we all have a wonderful new year. I was born in the Chinese year of the sheep, and we're about to enter another year of the sheep, so it has to be good for me, I hope.
PS not ready to cry deeply yet. Have to be strong for the kids, and to see what the neurosurgeon says.
PPS prayer to White Tara for healing: "Om Tare Tuttare Ture Svaha"
Recite the mantra for all who need healing - there are some lovely images of Tara on the web, it helps to visualise her while reciting the mantra.
PPPS I hope I haven't just been excommunicated from the scientific community of psychologists and neuropsychologists for declaring a hope that spirituality might be helpful. If I have been excommunicated, I don't care. We need to recognise that spirituality is an important part of wellbeing for many people, and that we fail to look after people holistically if we let logical positivism and science make us blind to spirituality.
The Tibetan Buddhists have been studying the mind and consciousness for thousands of years, and are far ahead of much of western knowledge and philosophy. I'm going to start studying these things seriously, as they are more important than mundane domestic chores.
Peace and love to all.
