Sunday 28 June 811 pm
Just a brief update before I turn in. I'm feeling physically exhausted tonight, not that I've done much to deserve it. We had a little walk down at Seaport tonight, to and from a quick dinner at Mud. It's been one of our regular dining places, and it's always good to have a walk along the boardwalk before and after. Our boys were just toddlers the first time we took them there, before we moved down here from Melbourne in 2010, and now we're packing up and getting to move back there. There's only one more week of school this term, and the boys will start at their new school in Melbourne on July 13th. We'll get there the week before, and have to get uniforms and books for the school in our first week over there. Then we'll start looking for a house that's close to the school. I don't know when I'll be able to drive again, so it would be excellent to have something within walking distance.
I've still been troubled by fatigue, a possible side-effect of the Avastin. I'm seeing the medical oncologist tomorrow morning, so I'll ask if there's anything I can do about the fatigue. I'm not like this. I don't usually need to sleep for most of the day, and I can't remember the last time I woke up feeling refreshed, either in the morning or after a day-time nap. I've had long, heavy naps during the day recently, and I haven't enjoyed doing it. There's so much I need to do around the house as we prepare to move to Melbourne. I don't like spending so much time in bed, but I feel physically and mentally exhausted. I try to get something positive from it by meditating, praying, or saying all the mantras I can remember, but I'd rather be up and around, doing the things that used to give me a sense of purpose and achievement.
At least there's no evidence of new tumour growth on the most recent MRIs, and I'm guessing a little bit of enhancement from scar tissue would be expected. I'm doing remarkably well for someone who has had four craniotomies (brain surgery) to remove brain tumours, and for all the radiation and chemotherapy I've had to treat breast and brain cancer. My latest pap smear results came back reported as mildly abnormal, and recommending I have a review every year, rather than the every two years that is usually recommended. I had a similar result several years before I had the children, and was used to having annual pap smears (a test for cervical cancer), so I don't mind doing annual reviews again. I saw how cervical cancer spread to the liver and colon in a cousin who died 2 years ago, and I don't want to go there.
I wish I wasn't so darned tired. I could fall asleep right now, only the boys are still up and about, and it's only 838pm. But I am feeling drained of energy, and I don't want to irritate the family by forgetting things (asking questions I've already asked before). As a neuropsychologist, I never knew how memory problems caused problems within families. Family members seem to get irritated when I forget things, and also sometimes get exasperated when I get overwhelmed by noise and other environmental distractions in the home or when we go out. I tell them I'm not trying to annoy them deliberately, which they usually acknowledge, but it seems to happen anyway.
Ok. I'm struggling to maintain my concentration now, David lying at the foot of our bed and watching 'Despicable Me' on TV, Nathaniel sitting up between us, and Ben browsing through some model helicopter magazine. My head feels heavy and my energy levels are low, so I'll stop writing now and try again another day.
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.
