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.


Wednesday, 25 September 2013

Handling the interface of personal and professional

As a somewhat prolific poster on an australian neuropsychology internet mailing list, and as someone who had been on the national committee of the College of Clinical Neuropsychologists (CCN) since 2006, serving as Chair from 2011 until my breast CA diagnosis in January 2013, I felt I should be honest and open about the reason for my stepping down as chair when I was diagnosed. I received many messages of support and appreciation, often from complete strangers, or unexpected sources, and it was good. 

 I felt bad for burdening my colleagues with my health problems, but I felt worse because the health problems were stopping me from progressing teams to work on a  a number of key projects for the college, particularly to do with access to Medicare, improved training and funding for neuropsychology coursework, placements, registrar conditions; developing competency-based placement evaluation forms; supervision training for supervisors and trainees, seeing if we could use level 1 trained psychological assistants to improve our work efficiency (see more patient by supervising the more routine aspects of our work - imagining the productivity improvements if we could do the clinicial interview, history, and review and interpret the results of an assessment done by a well-trained technician, rather than insist on doing every. single. thing. our. selves. I've always enjoyed supervising students and seeing them develop from novice to advanced skills, and I don't see why a Level 1 psychologist could be trained to conduct certain parts of an assessment under supervision, with video backup as evidence. We are more likely to get funding for psychological assistants in public health settings than we are to get additional neuropsychological positions. And don't get me started on the travesty in NSW, where neuropsychology positions and clinical psych positions are advertised as one. There need to be a clear demarkation from the employer as to what they want.

 Under my second year as CCN chair, the plan was to improving access to neuropsychology services in regional, rural, and remote Austraila; improving student particiption in the CCN and development of a greater collegiality in the CCN so that people would share their ideas and inspirations, to the betterment of the whole profesion. I had a brilliant, enthusiastic group on the CCN National Committee, and I was so looking forward to working with themon the various projects. We were going to have fun with these things in 2013, strengthening existing ideas and inititiatives, and developing new ones to strategically plan for the future.

 Then the rug got pulled out from under me by the discovery of a 7cm invasive ductal carcinoma of the left breast. I had to have a mastectomy with secondary lymph node clearance on January 31st, followed by 6 cycles of chemotherapy and 6 weeks of radiotherapy. 36 weeks of treatment included 5 episodes of febrile neutropenia requiring hospital admission and IV antibiotics for up to 5 days at a time. 
It wasn't fun. It was tiring. I wanted it to be over. I lost the desire to shop (quelle horror!), and the though of scheduling celebrations to mark the end of the treatment phases just demanded too much energy. All I wanted to do was take the boys to Queensland for two week's school holiday, catch up with my beloved cousin Caroline and her family, and meet up with my wonderful CCN family at the conference in Brisbane on Ocober 3.

 Just when I thought it was all over, just after my last radiation treatment on the 22th of August, just after having celebratory meals with family and friends, just after handing out chocolates and cards to the Chemo and Radiation teams at the Holman Clinic (writing that I was glad I'd never have to see any of them in a professional sense again), just after thinking that my treatment was behind me, and that I would be able to start getting fit and strong again....Just then was when I discovered a second rug had been pulled out. Not one, but two, masses were growing in my brain. A large, ring-enhancing lesion in the right parietal lobe, with surrouding oedema and mild mass effect; a second, smaller lesion, slightly dense, no ring-enhancement, mild oedema, at the end of the lateral ventricular horn of the left occipital lobe. The initial differential diagnoses were breast metasteses or cerebral abscess, but they turned out to be gliomas. Nice, high quality, high grade, aggressive gliomas. Grade IV. Aim for the top! Get the best quality you can!

 I know I should have sought assistance for my tendency to be an overachiever. I didn't realise that a behavioural trait could manifest physiologically....

 I have great faith that I will get through this okay, relatively unscathed. My post-op symptoms from the craniotomies on the 6th and 12th of September are mild. Just a little weakness on the left , and a resolving visual field defect on the right. Some proprioceptive change on the right - I need to be careful when pouring drinks, or the counter gets wet, and I need to watch where I'm walking so that I don't slip and fall like I did the other day. I also need to be sure to be aiming my derriere at the correct chair, lest I land on the footstool again, like I did the other day. I have to avoid swatting on the floor to pick up low items, as my calves and thighs need assistance from my arms to get me upright again - or I crawl to a bed or strong chair where I can pull myself up. The corticosteroids weaken the long muscles, apparently. And make it hard to sleep. And suppress cortical oedema, which, untreated,  causes drowsiness, irritiability, photophobia, nausea, vertigo, and a general sense of maliase. I'm being weaned off the Dex, but slowly, I don't paricularly enjoy the nausea et al, and I so desparately want to sleep! 

I'm young and healthy. The lesions were resectable, and the Stupp CT/RT protocol should stop them from recurring. It's not a curable form of cancer, but it is treatable. And at this stage mine is eminently treatable.

So, knowing that some word would have got out among our small neuropsychology community (<500 in Autralia), I wrote and sent the following email tonight. I haven't been brave or honest enough to say exactly what is going on, because I know GBMs are much nastier affairs than breast cancer. I don't want to upset anyone, I'm not doing it for attention, but I'd rather people know the truth. In all honesty, the email doesn't contain the truth like this blog, but it's the best I could do. I worry that people will think I'm being a attention-seeking drama queen, though I know that's just not true. I've seen some pretty unpleasant things happen to people in my life over the years, and have given up on trying to make sense of it. Far better to "gather your rosebuds while you may, for summer days are flying, and that same flower that shines today, tomorrow will be dying". Or, Carpe Diem.  Seize the day.


Dear colleagues

If, like me, you have always been interested in knowing about the brain, you may have found some conditions too horrendous to contemplate because of their reputation for rapid and terrible suffering and mortality. For me, these conditions included CJD (which I saw rapidly consume the 48yo mother of a beautiful Indian bride) motor neuron disease, advanced Huntington's disease, behavioural variant Frontotemporal dementia (especially heartbreaking to see it steal a 22yo new graduated mother, and how it destroyed the family of a loving 36 man, who had taken sides on what appeared to be a pending divorce before the diagnosis became clear. Aggressive brain tumours are also in my feared conditions list - they have the power to kill rapidly and efficiently, and median survival outcomes seem dismal. 

I've been thinking about these conditions where we rarely seek to tread, and how our fear gives then power beyond reason - and the patient can get lost. At worse,they sense is that something very bad is happening, and that things are dire. At best, they are informed and supported and given hope that not all is lost. Look at Stephen Hawkings! still going strong with MND. Look at the late Christopher Reeve. Look on the internet, and you'll find heartening tales of survival and hope for people with all manner of terrible diagnosis. Act as an informed clinician, ignore the awful what-ifs, and enhance the quality of life of the person who has a very unfortunate diagnosis.


To help demystify one of my top  scary brain disordrs, I would like to recommend the following article to you.

http://neurosurgery.ucsd.edu/glioblastoma/

It is excellent. It provides hope through the use of calm, factual, plain English, without the emotive drain of survival statistics.

Good for cutting though the fear of death and disability.
We need to cultivate hope in our patients and their families. Even if a diagnosis is grim, there is always hope. There will always be love from family and carers. There can be dignity in disability. That is, unless we put our fears in the way, then we minimize the potential of the patient and family to make the most of the situation they are in. We're not helping the patient in such a situation, we're dealing with our own fears of death, loss and suffering.

Not a very technical neuropsych email, I know, but I need to use my insomnia productively :)
I wish I could join the many of you who will be celebrating the CCN's 30th year at the conference up in Brisbsne on the 3rd! I'd strongly encourage any swinging voters to register before the deadline, as it's going to be a great program, and will give you all the chance to see Brisbane, which has a charm of its own.

My favourite ID card of all time. An inadvertent "glam" shot from my postdoc fellowship at BUMC and VA Jamaica Plain. Taken in 1997,  I'd just completed my PhD, turned 30, got engaged to Ben, and was doing a 6-month stint in Boston  with Marlene Oscar-Berman.  I met a lot of wonedrful people over there, including neuropsychological legends like Edith Kaplan, Howard Goodglass, Laird Cermak, Mieke Verfaille, ...and that was just in Boston. I was a total fangirl at the 1997 NAN, and introduced myself to everyone who's name I recognised. I'd been reading their stuff for so long - Munro Cullum, Kerry Hamsher, Robert Mapou, Wilma Rosen, John Courtney, Paul Lees-Haley, Graeme Senior  :)... it was a blast!
It was fun living and working in Brookline, though lonely.  I loved going over to Harvard Yard and Cambridge on the weekends. Seems so long ago now.


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