I had another MRI yesterday, just to check on the changed sensations in my face, mouth, and tongue.
Lying in the MRI machine, head comfortably held still by a squishy foam pillow and headphones, I felt sad for all the times I'd enthusiastically raved to patients about technology like MRI or CT scans, or even EEGs. Now that I've had a year of being injected, cannulated, infused, scanned, and anesthetised, I know that if I ever go back to seeing patients, I'm going to do it very differently. If I were to meet my former self, I'd find her almost insensitive in her enthusiasm about medical procedures (not that I was ever enthusiastic about infusions or needles of any sort). After a year of admissions, infections, and more procedures than I can remember, I feel profoundly tired, and almost intolerant of any more procedures. I've had enough. I will submit to more procedures when necessary, but I'd just like to have a break from it all. I've been good, couldn't my body start behaving itself?
I'm getting the results of the scan today at 1230, the appointment was originally for 3, but my doctor wanted to change it. I'm trying not to read anything into that. If it was urgent, they would have got me to come yesterday.
I'm going to ask for copies of the radiology reports today, I want something concrete to take home, I want to know what the radiologists who've viewed my scans think about them. I don't trust my own amateur readings, even if I've been looking at scans since 1990.
If there's regrowth of the tumour, it will hopefully be resectable, and we can use the gliolan to help the surgeon see as much of the damned thing as possible.
I just hope it's nothing. I think I deserve a false alarm by now. (deliberately ignoring the normal bone marrow biopsy - I'm thankful for that, just want another).
I was worried sick last night, it's so hard to block out the "what if's" when I see or think about David and Nathaniel. I don't want to disrupt their schooling, I don't want to worry them, I don't want to consider the prospect of not seeing them grow up, of being sick again. Life was so much more certain before all of this. I couldn't see any roadblocks in the future. All being well, there won't be. We'll go up to Queensland at Easter to see Caroline and her family, and we'll take the kids away on holidays every time we can. I'll start taking 2 half-hour walks each day, and seeing friends at least 2 days a week, and take the kids bike-riding and visiting friends more often.
Before my appointment today, I will lie down and meditate with the mantra that was recommended for me. It's called the Namgyalma Mantra, and the short form is Om dhrum soha om amrita ayur dade soha.
It's said to have infinite benefits, not just for the person saying it. You can read about it here: http://www.tonglen.oceandrop.org/NAMGYALMA%20MANTRA.htm
I'm finding the mantras a useful way to focus and feel like I'm doing something useful, and also a way to drift off to sleep without succumbing to negative ruminations, which are currently beating on the walls of my consciousness like a riotous mob. Time to stop writing and start meditating.
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.
