I texted my rad onc today: "I've been getting an increased feeling of numbness in my lower face (jaw, cheeks) and am having trouble eating rough-textured food. I almost gag when swallowing it." When I saw him at 145, I also told him how my tongue feels a little numb, and my soft palate feels odd. So now I have an appointment for another MRI of my brain at 11 tomorrow. We had a good look at my last scans - there were areas of oedema (swelling) and increased density in the right parietal region, which might just be scarring from the surgery, but could also be tumour regrowth. God, I hope not. My poor old brain has coped remarkably well with two lots of surgery. The scotoma has nearly resolved, and I can walk without the forearm crutch most of the time now, I just take it for reassurance on longer walks. My poor body has been through so much in the past year, and I'm starting to feel healthy again. I'm even starting to declutter the house, one surface at a time. I don't want any more setbacks, I want to start having a normal life again.
To add insult to injury, I was mistaken in assuming that no news on my breast mammogram/ultrasound was good news. The right breast is very dense (just like last year) and there were possible micro calcifications (trouble signs) on the mammogram. The report suggested a biopsy. So my rad onc thinks I should ask my surgeon if I should travel to Hobart to have a MRI of the breast (they don't do them up here). I'm seeing the breast surgeon on Valentine's Day. If I need to go to Hobart to see the neurosurgeon, I may as well have the breast scan done then.
This is not the way I imagined this year panning out.
I won't hope it's a storm in a teacup, I haven't been lucky in the past with those kind of wishes. Apart from the bone marrow biopsy - no bad news there - so maybe my luck is changing?
It all seems so surreal, I can't think of anything I've done in this life to deserve these health problems - but there's no rhyme or reason to it. It's best if I stay calm and hold off worrying until I have something to worry about. The right breast was probably doomed anyway - I should have had a prophylactic mastectomy last year.
How am I feeling? part of me is silently repeating the F word and looking where to run and hide. Part of me is terrified that my health and life-expectancy are under threat again, just when the boys are back at school and in a routine. Part of me is looking at the blue sky and digging like mad to get out of the sandpit I've found myself in - I just don't know if it's shallow or deep, and I don't want to get stuck in it. I can't show my feelings to the kids, no need to worry them before we know anything. I pray that this is nothing, that I'm just being appropriately careful and that nothing will come of it. I wish there was an off button for my dramas - sleep and meditation are my best refuge.
I'll post an update as soon as I know anything
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.
