I was set up to have my 6th Avastin treatment today, but they had to postpone it until next week because my platelet count was 80 on the blood tests done last week, and it was 85 on the bloods taken today - a bit higher, but still a bit too low for them to proceed. All my other bloods were okay, or very good, so that's good news, I guess. Ben has discovered that Avastin can cause a range of side effects, including fatigue, muscle aches and pains, sinus congestion, and a lot of the other symptoms I've been experiencing. So let's hope they all go away over the next week as we wait for the next treatment.
I've been feeling extremely exhausted lately, and while it's not fun, it's good if it's related to medication side effects.
I spent most the day in bed yesterday, sleeping, meditating, praying, and hoping that I would wake with renewed energy. It didn't really work. Ben said it made the boys quite concerned - they didn't say anything to me. I was in the bedroom, they were in the kitchen/family room, and I hardly heard them. We had a good time watching some comedies on the tv in the evening, which was a nice end to the day.
It's 929pm and I've only just made it to bed recently, after an afternoon spent working through a number of things I needed to do on my email account after we collected the boys from school. The boys are settling in bed, and I hope we all sleep well tonight. Last night seemed quite unsettled, and I would treasure a solid night's sleep
Thanks for all your emails and support.
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.
