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 September 2013

Dexamethasone and Convalescence

150am on Tuesday. Feeling wide awake, so I'm snuggled up on the couch under my cousin-made quilt, listening to the rain squalling outside, watching Fiddler on the Roof on ABC (I've never seen it before, shame I missed the first 40 minutes, but it will go to 4am, if I do). Ginny is quite happy lying on her bed outside. A little too happy. She loves the sound of her voice at night, so I've brought her in  before the vocal warm-ups become full-throated barks.

I've had a few hours of almost solid sleep - 930-1100, 1145-1 with 5 mg of Valium. Not ideal, I know. I hate the thought of needing benzos to sleep, and valium is one of the worst, but they didn't send me home with any temazepam, and it's hoped that I'll start sleeping better as the Dexamethasone dose is reduced further. I'm feeling good though, and will go back to bed if I feel sleepy. Or end up sleeping on the couch while the movie finishes....

Yesterday was not a good day. I had lost the letter with the neurosurgeon's instructions to reduce my dose of Dex from 2 mg 3 times a day to 2 mg twice a day, which would have sen me on 4mg a day by last Thursday. I had taken 2mg+2mg+1mg on Sunday, after the overstimulation episode, and felt better on Sunday night and yesterday morning. My rad onc had advised to take 4 mg yesterday morning, and 1 mg at 1pm, still a total dose of 5mg, but it totally whacked me for six.

I was up with David for breakfast at 530, took my tablets, and by 730 needed to crash. I slept for an hour, but not well, and when I woke up, my entire upper body was aching and weak, particularly arms and shoulders. I felt dizzy and unsteady and very tearful. I can cope with the slight weakness and incoordination of the legs that Dex causes. I can cope with the wonderful sense of clear-headedness. I quite enjoy the euphoria, thought I hope that it's not just the Dex, I really feel incredibly lucky to be alive. I know I'm lucky to be alive. And I'm so grateful for all the things I have - it's not a chemical euphoria. I have experienced a life-changing event. But I can't cope with the proximal body weakness. It's awful to feel achy all over, and weak, and like you will fall over if you get out of bed. I hate that.

I spent most of the day in bed, thankful the boys were out swimming with friends, and glad for the help of my cousin's husband in the house. He came regularly to help during my breast cancer chemo, cleaning, tidying, cooking, and gardening as required, and he's been a godsend this last week. Just to have someone to do little things for me, with the most enjoyable being moving pictures and small pieces of furniture around the house, and helping me to declutter. It's been so therapeutic to get rid of things hoarded for too long out of sentimentality, and to rearrange our various paintings and pretty things. I can really feel the energy shifting in a positive way in the house, and it's good.

Anyway, the Dex issue is fixed, I hope. I'm going to follow the neurosurgeon's plan, now that I've found it. I will take 2 mg in the morning, and 2 at 1pm for the next four days, making a total of 4mg. Then I will reduce the 1pm dose by 0.5mg for another four days (3.5), then I will reduce it again so that I'm on the 2mg +1mg dose that my rad onc says is the desired dose for my RT, which may cause some cerebral oedema.

It worries me how other patients would cope with this. Imagine if I had cognitive impairment, if I couldn't think things through logically - I suppose I'd have been given more support if I was a more ordinary patient. Not that I'm extraordinary, but I guess I am different. And I wouldn't have gotten into this pickle if I hadn't lost the weaning schedule that arrived last week. I would have been on 2+2mg since Thursday, and yesterday would have been the start of  2+1.5mg dose. So I'm four days behind. Could be worse.

Fiddler on the Roof is quite a nice movie, I'll have to pay attention to it now, lying on the couch, glad for the underfloor heating in our family room, glad for the rain on the roof, for children and husband and dog sleeping soundly, for this wonderful life.

love to you all

x



One view from my bed. 
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