I've been loving the spring weather lately, and feeling a bit like I'm wagging school whenever I go out in the garden. This is the time of year when I remember struggling to stay inside and study for final exams at school and uni, it is just so beautiful to sit in the sun outside, and studying outside isn't helpful, because the sunshine induces a wonderful languorous sleepiness.
I've been doing really well lately, my appetite is back and I've had the energy and inspiration to cook healthy meals for the family each day, and I've been doing exercises on the fit ball to improve the strength in my legs - all that time in hospital left me deconditioned and feeling a little uncoordinated when I try to run (I felt like a jerky string puppet). The fit ball exercises have been surprisingly effective, and tiring, and I managed to semi-run to the front gate this morning to catch Ben as he drove the kids to school (they'd forgotten some paperwork).
The dining table still isn't completely cleared off - I plan to organise all the tax stuff and do the salary packaging claim forms today, just so I can get a longstanding task off my to-do list. There are lots of other things to do to tidy up and declutter around the house, but I'm trying to do a balance of things (phone calls, exercise, reading, housework, gardening, healthy diet) so that I have a sense of achievement rather than boredom. I'm hoping to return to driving and to work next year. I have to live as if the GBM isn't going to come back. The most recent MRIs show further shrinkage of residual tumour around the two surgical sites, and reduced enhancement in the right hippocampus and left temporal lobe compared to previous scans, so the tumour hasn't completely disappeared, but it's not progressing. It was a nasty shock to realise that it may always be with me, but I can't live each day in the fear of recurrence. Having GBM has been a stark lesson for me in the delusion of immortality that helps us all to function and waste time on irrelevant, unimportant things. Like that blasted Bejeweled Blitz game that sucks me in on my phone each morning. I enjoy matching up the coloured gems and seeing them explode, but it can easily consume 2 hours of my time playing "just one more" one-minute round. I try to recite healing mantras and sit on the fit ball while I do it, but I know that's cheating, I should be concentrating on the mantras and not using the game as counting beads for each recitation. I'll report on my progress in quitting it next time I write.
Have you heard about the 29yo woman with GBM who plans to end her life on November 1st? I find it very sad and very disturbing. Read the story here and watch the video.
http://www.smh.com.au/lifestyle/life/brittany-maynard-scheduled-to-die-this-saturday-fulfills-bucket-list-wish-20141030-11dzdh.html
Her blog http://www.thebrittanyfund.org/?nlb=1#about-brittany gives a little information
The image of her brain scan suggests the tumour was in the left fronto-temporal region, but it's not clear if she's been offered surgery, only "whole brain radiation" and chemotherapy. It seems from my reading elsewhere that some surgeons are reluctant to operate on "eloquent cortex" - parts of the brain required for speech and comprehension - this may be why she hasn't had surgery. Her puffy face suggests that she's on steroids to reduce the brain swelling, and if her tumour has been judged as inoperable, she may be having ongoing headaches (the steroid-induced puffiness and headaches are confirmed on her blog). She seems to be speaking very fluently for someone with damage in that region, but I can understand her fear of losing the ability to speak, or that a natural death would be slow and painful for her.
It saddens me that surgeons may deny people surgery because they don't want to make them aphasic: strokes and head injuries cause aphasia and a range of other physical and cognitive deficits every day, but people learn to live with it, and there is usually some degree of recovery, and strokes and brain injuries aren't aggressively invasive, not like GBMs. Denying someone surgery to remove a GBM because they may not be able to speak or comprehend language afterwards is consigning them to a more certain, more rapid demise from the beast. It's not giving them the chance to make any kind of recovery, or to benefit from the available treatments. It's saying that life isn't worth living if you're aphasic. I've seen many people who've become aphasic after strokes or brain injuries who have lived happy and fulfilling lives. It hasn't been easy for them, but a damaged brain isn't like rotten fruit, to be thrown out because it isn't pristine and perfect. The 'Compassionate Choices" people advocate dying with dignity as a choice for those with terminal illnesses whose "suffering has become too much." Is having a puffy face and weight gain from the steroids too much? Headaches, neck pain, might be hard to deal with, but it's not clear what her current clinical status is. She's chosen November 1st to die, but says she can change her mind if she wants to. I hope she does change her mind. There is still hope.
It is possible to love and be loved with a brain that's not working, and the end stages of brain disease are usually characterised by increasing sleepiness and reduced ability to walk and self-care. Medications and supportive care can usually help manage pain (I haven't read of pain being a major issue in the end stages of brain cancer), and although becoming completely dependent on high-level care isn't something that anyone of us would wish for ourselves or for others, I don't think that Brittany's story is a dying with dignity issue. Her decision seems to be more related to a fear of death and dying, and to the ridiculously concrete prognosis she was reportedly given. Her age, gender, and level of functioning mean that her prognosis should be better than that for older, sicker people with GBM. Her choice of an arbitrary date to die (it's after her husband's birthday), before she becomes severely impaired, is hard to fathom. I wouldn't make the same decision, but I have two children who I don't want to leave, and I've seen enough people die from progressive diseases to know that it's hard to predict when it's going to happen, and that life is too precious to terminate early just because you cannot bear to see them suffer. Of course, if someone is actively dying and has unbearable pain or nausea that doesn't respond to treatment, then I can understand their desire for relief from suffering, and the desire of others to help them end it. But choosing to die on November 1st because you've been told you have an incurable form of brain cancer, and when you've been well enough to go to the Grand Canyon the week before with your family.... the fear of getting worse seems to be driving the decision to die. She could have many years left ahead of her. And even if it's only one year, there are still many things she can do to enjoy life, and to enjoy the love of her family and friends.
I don't know Brittany, I don't know all the details of her case, but I do feel very saddened by her story, and by her decision to end her life. There is always hope. Even for GBMs. And we all have to take our last breath one day - why hasten it because you've been told it's likely to happen soon? I'm going to keep inhaling the scent and joy of life for as long as I can.
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.
