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, 17 March 2014

Tuesday musings

847am, back in bed, feeling achy from a very long walk on Sunday. Didn't sleep that well last night - hips aching from the GCSF, calves aching from the walk. Woke up feeling great this morning, but my energy fizzled away after we'd dropped Nathaniel off at school. The cold, dreary weather didn't motivate me to take a walk - the warmth and comfort of my bed are much more appealing - I will try to get my sleeping out of the way in the morning today, and build my energy for the afternoon.

I've been touched by the dozen emails, text messages, and phone calls I've received since my last blog post. It's heartening to know that you're thinking of me, and it makes me feel stronger and less alone.

I'm still coming to terms with the news that there are possibly three low-grade tumours in my brain. I think I'm still cycling through the stages of grief, not in any particular order - shock, anger, denial, guilt, bargaining, sadness (not depression for me), and acceptance. I sometimes work through several of these stages each day. Sometimes I find that meditating before falling asleep helps, other times I compose blog posts in my mind, other times I just turn off my mind and go to sleep - stress and sleep deprivation making seizures more likely, and me more emotional. Most times, I plant my spear in the ground and turn around to face the battle ahead. I am not going to succumb to this without a fight, and while I wish I didn't have to spend time each week reading about alternative cures for cancer, I know that it's the best thing I can do, given that there are no conventional therapies available for me - I can't have Temodal, the chemotherapy used for brain tumours, because my blood cells weren't reaching maturity, and  my bone marrow still needs the GCSF to encourage it to produce more blood cells so that I don't become pancytopenic again - I don't want more blood transfusions or IV antibiotics, or more serious complications like myelodysplasia.

My prescription medications include
thyroxine (for long-standing hypothyroidism)
aerius (antihistamine)
Keppra (anticonvulsant)
Tamoxifen (to reduced recurrence of breast cancer)
Nexium (for acid reflux)
Valgancyclovir (anti-CMV, shown to dramatically improve outcomes in people with GBM)
Melatonin (helps with sleep, also reported to have anti-GBM effects)
GCSF (to boost bone marrow)
Dissulfiram (aka Antabuse - reported to cause glioma cells to absorb copper, which kills them)
Clonazepam (as required, if I have an aura (sense that a seizure may be coming on)

Herbal/supplements (list developed after lots of reading and consulting with pharmacist  (marked *) and checking with oncologist

Folate
Vitamin E
Vitamin D*
Astragalus 8*
MagCal*
Zinc Maintain
Selenium drops*
Immune defence*
Probiotics
Acai capsules
Squaline (shark cartilage - Ben found some research suggesting it was useful)
Resvertrol (liquid made from skins of red grapes - tastes better at room temperature than out of fridge)
Curcurmin*
Avemar (fermented wheat germ, said to improve immune function and NK (natural Killer) cells, and to reduce chance of metastases - wish I'd ordered the capsules, the powder in the sachet fastest like fake grape juice0)
Percy's powder (a mixture of minerals that Percy used to cure his sheep, and himself, of cancer - fascinating story - the powder, when mixed with water, tastes like mineral water from the pumps at Hepburn Springs in Victoria. Best downed quickly and followed by something to dilute it).
And a whole lot of Tibetan medicine tablets that Ben has obtained for me through a Kiwi who trained for 10 years in Dharamsala.

I've ordered some Pecta-Sol (Modified Citrus Pectin) to add to the regime, it's reportedly quite effective in a number of cancers. 

All of my reading is making me think that dietary and metabolic factors probably contribute to the development of cancer more than genetic factors. Poor immune system health (from unbalanced, unhealthy, inflammatory diets) makes people more vulnerable to disease, and boosting the immune system seems to have some benefit in treating or even curing cancer.

I'm really pooped now, need to have that nap, before tiredness allows me to be overwhelmed by the task ahead. When I wake, I'll have energy to fight again.

PS (post sleep) - I slept most of the day. Good, deep sleep, with dreams. I feel reinvigorated, and am working to dispel the fears that increased sleep during the day is bad. The fears are like leeches, and need to be picked off, one by one. There's so much I want to do, and I am telling myself I have all the time in the world to do it. I need to care for my body, detach my mind from irrelevant, unimportant things, and focus on healing myself so that I can live a long life dedicated to helping others be free from suffering.

Om mane padme hum.

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