Hindsight and headaches
For years now, I've been feeling a little fuzzy in the head, a little distractable, just not quite right. I thought it was due to sleep deprivation (particularly after having David in 2002) and stress (juggling care for 2 small children with a job, having my elderlymother-in-law live with us while father-in-law declined in a nursing home from 2005, and seeing my own father slowly succumb to normal pressure hydrocephalus from 2004-2012).
I had started getting hayfever in 1993, which transformed into to sinus headaches in 1997 - the itchy eyes and sneezing stopped, and my sinuses just clogged up, causing nasty headaches. They were painful,piercing headaches accompanied by a postnasal drip and sinus infection that sometimes had me in bed all day, and felt worse when I leaned over or changed position. The pain was usually on the right. The headaches usually responded to antibiotics, but they kept on recurring until I started taking daily prophylactic antihistamines in 2009, which I stopped taking so regularly after the breast cancer diagnosis in January this year. The last "sinus headache" I can recall was when I was in hospital with my first neutropenic episode. The pain was about 7/10 (not that anyone asked me), and I remember being annoyed because they wouldn't give me sudafed to help clear the sinus congestion. They did a CT of my sinuses though, and they were fine. I remember thinking they should
just scan my brain and be done with it. If they had done a CT of my brain, however, they would probably have found the tumour....and I don't know if I would have coped. It was hard enough getting through the breast cancer treatment with all the neutropenic episodes. To have found out that there was a tumour growing in my brain at the same time would have been .... inconceivable. It was a very stressful time for our family, and going through the breast cancer treatment has brought us closer together as a family unit. It has given us the resources to pull together and cope with the current challenges. Of course it would have been good to have found the brain tumour earlier, years earlier, but we didn't. We can't go back in time. We just have to take one step at a time and do the best with what we have now.
I didn't really worry that my recurrent headaches could be anything sinister, and I didn't want to complain. Well, I did worry a little, having seen just one patient in Melbourne who had had recurrent headaches treated by a chiropractor, until he had a seizure and was found to have a right frontal tumour. From the history it was obvious that there had been something seriously wrong with him (particularly behavioural changes) , but if you read up on brain tumours, they are often hard to detect, and become obvious only with the benefit of hindsight. We didn't see many brain tumour patients in our neuroscience unit at St Vs - most of the cases were to confirm and delineate existing brain conditions, to help diagnose suspected brain disorders, to clarify the effect of medical conditions on cognition, behaviour, and emotion, or to as part of the epilepsy surgery program. Patients with tumours were rarely referred, unless they were having functional difficulties in the community and were lucky enough to have a GP or ABI caseworker who referred them back to us. As a result, I was curious about brain tumours and cancer from at least 1997, and attended a conference workshop about them and bought a book about cognition and cancer - it seemed to be an area that we neuropsychologists should know more about. I never thought I'd get first-hand experience. It seems so ironic.
There was one epilepsy surgery patient at St Vs who came in from the country for a regular 6-month post-surgery neuropsychological review and we found that she had suffered a significant and unexpected decline in her nonverbal memory. She was actually quite unwell, and fatigued during the history and memory assessment, and in talking to her, and checking on her file, we discovered that she had had a tumour in her right temporal lobe, which had grown since the surgery, so she wasn't our typical postop patient, and we discontinued the assessment. It seemed cruel and unncessessary to put her through a lengthy assessment when she was fighting for her life - it was more useful to give her education on fatigue management and dealing with visual memory problems, though we felt helpless. The tumour was a GBM.
Maybe it's just because we've come in from a lovely lunch and visit to Princess Park afterwards, but I'm feeling a wave of nausea thinking about her, and how she was one of the very few postop patients on our epilepsy surgery program who had a clinically significant drop in visual memory function after surgery (baserate <5%). Very few of our standard mTLE patients did. Knowing our postop outcome data, I'd say it's because her tumour was a new lesion that disrupted visual memory function, compared to the old neurodevelopmental lesions typically seen in mesial temporal lobe epilepsy. I'll have to get my students to publish their outcome data soon.
The MRI
About 13 years ago, having a niggling worry about the cause of my headaches, which had only been troubling me for a few years, and wanting to check that there was a brain in my head (and more importantly, to see it), I cunningly volunteered to be a control subject in one of my doctoral student's functional Magnetic Resonance Imaging (fMRI) research projects in 2001, and the scans showed a nice healthy-looking brain (there have to be some perks to being a research supervisor). The only odd thing about the scan was that the right hemisphere was slightly plumper than the left, particularly in the parieto-occipital region. All fMRI scans are reviewed by a radiologist, to check for "incidentalomas" - abnormalities that are uncovered just because a scan has been done. My scan was reported as normal. I thought the plumper right hemisphere was evidence of my pretty good visuospatial skills, but asked the radiologist about the slight asymmetry. The radiologist said it was within normal limits. Now I wonder if it was the first sign of trouble brewing. Without a contrast medium, or the other manipulations done for diagnostic imaging,, it's possible that the real trouble was overlooked. I haven't been able to find the CD with the images on it yet, but it's somewhere safe, in our attic.
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.
