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.


Monday, 30 December 2013

Two weeks after brain radiation finished

13 December 2013

School holidays have begun, and the first day hasn't been too bad. I'm thankful that my old housemate, Debbie (Barkly St, Carlton, 1990-1995),  has been here since Tuesday, she's fed the boys and kept the house running while I've been feeling very lacking in energy.  I am still a bit surprised that she came on Tuesday, and that it's Friday and she's gone already. We had lots of good conversations, as old friends do, but the time has gone in a blur.

I was still neutropenic when my bloods were taken on Tuesday - neutrophils stable at 0.8 - so until my bloods return to normal, I won't be starting the chemo that was supposed to start next week.

Today I was awake most of the morning, had a nap from 11ish to 1pm, when Mum woke me to remind me to have lunch, and then gave us a lift to the city (via the Pathology Lab, for my second FBC this week), to watch Cloudy with a Chance of Meatballs 2. The movie was okay, my main reason for going was to see if I could tolerate a movie, because I'm very keen to see The Desolation of Smaug with the boys after Christmas. I'm pleased to report that I was able to see and follow the movie today, I didn't get too tired, and the second Hobbit movie should be fine.

I read to the boys until they fell asleep last night, and stayed an hour later because I couldn't put the book down (Cressida Cowell's How to Train Your Dragon Series : How to Betray a Dragon's Hero - absolutely brilliant! Amusing for adults and children, with complex long-term plots and moral dilemmas, more fun and less stodgy and dark than the later Harry Potter books (dare I say it?)). They let me sleep in until 8 this morning, which felt like a treat, and Debbie made me a delicious omelette.

My blood pressure has been a little low this week, causing me to feel dizzy and unwell if I stand up or sit in a chair for too long, and I feel like Raggedy Anne, or the Flippy Floppy Scarecrow from PlaySchool. I should be getting a half-hour walk in each day, but I'm not sure I'm achieving it. It's just so hard to get out and walk with my energy at such a low ebb, and the dizziness doesn't help at all. My rad onc put me onto something to help with the low BP. and I'm trying to drink as much liquid as possible - I'm told that coming of the dexamethasone can affect BP. At least I have Ben and my doctors telling me to wean off the Dex slowly - reading various forums on the internet, some patients have gone off it quickly, and have very unpleasant experiences - it's actually dangerous to go off Dex quickly, because the adrenal glands need to start producing cortisol naturally again. I can't reliably remember the details, but if you're interested, look up Addisons disease.

http://en.wikipedia.org/wiki/Addison's_disease

Oops - reading that, maybe my symptoms are related to coming off the dex.

Corticosteroid withdrawal[edit]

Use of high-dose steroids for more than a week begins to produce suppression of the patient's adrenal glands because the exogenous glucocorticoids suppress hypothalamic corticotropin-releasing hormone (CRH) and pituitary adrenocorticotropic hormone (ACTH). With prolonged suppression, the adrenal glands atrophy (physically shrink), and can take months to recover full function after discontinuation of the exogenous glucocorticoid. During this recovery time, the patient is vulnerable to adrenal insufficiency during times of stress, such as illness.[8]
Great. I hope I'm not experiencing a "medical emergency" - I've been feeling like this all week, my GP and rad onc thought that the low BP was probably due to the lingering cold that I've had. 
I'm annoyed to read that the treatment for adrenal insufficiency is treatment with more glucocorticoids and glucose - just as I'm nearly weaned off the Dex, and have been working very hard to have a glucose-free diet, so that I can starve any remaining cancer cells and obliterate them myself.

PS - (30 December) - well, I'm glad it wasn't an addisonian crisis, just a developing pancytopenia, hopefully secondary to chemotherapy and bone marrow suppression. 3 units of blood down, two more tomorrow, then hopefully the old bone marrow will wake up and start producing cells again. Time to sleep.


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