822pm and I'm exhausted. Sitting up in bed in a darkened room, Ben reading with the boys in their room next door. I really should be turning off the laptop and going to sleep, but I want to process what happened today. It hasn't been one of my best.
It started with David coming to my bed at 4, waking me again at 5, just as I was going back to sleep, and then again at 6 after I'd taken refuge in his bed. I don't cope well with being woken repeatedly when just on the cusp of sleep, and his sullen prepubertal demands didn't elicit the best mothering behaviour from me. I.e., there was a lot of yelling on both sides, and I've told him that if he wakes me before 7am ever again, he will not get to check on his games on my iPhone or iPad for the whole day. He sees that as a big injustice, which makes me want to destroy both devices. (Breathe, Fiona)
I'm half-way through my combined RT/CT treatments - 17 down, 17 to go. The hair on top of my head is growing back thick, black and curly (completely unlike before), but the area over my right ear has lost all of its hair, reavealing a thin pink scar and very smooth skin. There are sensitive spots on top of my head and at the back as well where the radiation is entering my scalp. I watched the machine move around me today during my treatment, and realised that radiation is passing through many areas of my brain in order to target the regions that surrounded the tumours. I asked the radiation technicians about that, if it would damage my brain, and they said that healthy cells repair themselves very quickly, whereas tumour cells find it harder to repair radiation damage. I hope my new mantra of "Cure, heal, protect" and visualising the golden loving light of creation during my treatment is helping add something to the treatments, along with all the medications and supplements that I'm taking. Add to that a good brain-reserve capacity, and I hope I won't come out of this with too much cognitive decline.
I had to make myself a drug chart on the weekend, like they use for patients in hospital, otherwise it was too damned hard to make sure I took them right. For example, it seems that my seizure might have been triggered by me taking a double dose of Valcyte the day before - my neurologist says Valcyte can lower the seizure threshold. I managed to sit down last Friday night and create an excel spreadsheet that lists my medications, (prescription and supplements) for the next month. It allows me to see the weaning dose of dexamethasone recommended by my neurosurgeon (I'm now down from 4mg 3 times a day(tds) to 2 mg tds), the increasing dose of Keppra and the decreasing dose of Epilum (sodium valproate). I'm still feeling sedated and muddle-headed at times, and find excess noise, sunlight, or demands from others very difficult to deal with. I need to keep the sunscreen blinds down in our house in the morning, as the light is too bright, and the children's tv, or even the inaninty of Channel 7's Sunrise, is incredibly irritating. Being asked questions while I'm trying to sort out my medications is very hard to tolerate - I need to be able to focus on one thing at a time, and I feel awful for snapping at the kids, but I wish they'd just listen to me and leave me alone until I've done what I need to. I know they're only kids, so I try to remove myself from the situation if they're driving me bananas, but then Ben tries to "help" by telling them I'm going to lose my temper - makes me feel great, though I know he's trying to help.
He was stroppy with me last night for asking, yet again, about the details of when I had a seizure. I was trying to establish how long the seizure lasted, how long I was unconscious, and how long it took for the ambulance to arrive. I know he said it lasted about 2 minutes, I was then unconscious, turned a bit blue, and that the ambos gave me some diazepam. I understand his frustration that I've been asking the same questions about the seizure repeatedly, then I realised that I wasn't asking the right question, which was how long did it take for the ambos to arrive - for some reason, it was very important for me to know. Unfortunately, he didn't know. It was important to me, perhaps, from years of taking histories about acquired brain injuries, and wanting to establish the duration of post-traumatic amnesia, by determining the duration between the last memory (for me, Ben calling the ambulance and telling David to run next door), and the first memory after (the ambo being beside me). Probably not important or relevant in the scheme of things, as I didn't have an ABI, but it's very scary to have had a seizure after having watched them on video EEG recordings for many years, to have seen them first-hand, and to know that having had a seizure and having a visual field defect means that I might never drive again. At least I've had 30 years of safe and happy driving behind me, and I'll still make a good teacher to my kids.
Last night, I had a look at a magazine and info pack that came from the Brain Tumour Alliance Australia. It had some helpful parts, but was a bloody dismal and depressing production, that would depress anyone without the ability to read widely and search for stories of hope. Far too many uses of the words "terminal", "palliative", and other phrases that suggest that all brain tumours are going to kill everyone. The outcomes aren't great for everyone, but if you take away hope from patients and their families at the time of diagnosis, you're going to skew the outcomes towards the negative simply because it's harder for depressed people to take control of their health. There are so many things we can do to improve our diet and lifestyle and fight cancer that way, even when we feel dopey and sedated, and with as much muscle-tone as a rag-doll, as I have today. Or last night, when I had a self-pity attack of feeling sick and tired of feeling sick and tired. I had a good long cry, generated some tryptophan through my tears, and reminded myself that things could be far worse, and that we're heading into spring, a time of new growth and new life. I have great faith and hope that we will get through this, and that I will be able to fulfil my lifelong desire to help people with brain disorders and their families.
I've long ago accepted that life is a terminal illness, that we're all going to die from the moment that we're born, and that we can't know when our time will be up. Some people will live long and healthy lives, some will be snatched away prematurely, without rhyme or reason. So the important thing is to live the best life you can every day that you can. We can never know when we might be called away. It doesn't stop me from sometimes feeling bitterly resentful at media portrayals of young and healthy people who seem to have no perception or experience of suffering, but I know that's all smoke and mirrors, too. The BTAA newsletter talked about resentfulness being a common reaction, so it's nice to know I'm normal, in at least one way. Everyone has their own crosses to bear, at some stage in their lives, and we all have to deal with them as best we can..
Given all the positivity I can generate at times, I found it ironic that I was able to get cross with my mother today when she came to visit, even though I was lying on the couch, feeling exhausted, having napped for about 20 minutes. She was complaining that she'd had to buy a water filter because she doesn't like the chlorine and flouride added to the water supply of her small town at the pressure of the "medical minority" who have been concerned about the levels of e.coli in the water for years. She said it didn't bother her (she never drinks cold water from the tap, always has boiled water, but it's disturbing to see the mud in the water after a decent fall of rain), and I said it wasn't just about her, that there was science behind it, and that e.coli wasn't good for people. She went on about me supporting the "medical minority" and I said it was based on science, and could she please desist from spouting such uninformed, unscientific claptrap near me when I wasn't feeling well. She took offence at that, so I tried to explain that I don't need to get worked up about things at present, and that this was one thing that was working me up, so could she please stop, but she took offence anyway. I apologised for being tetchy - I'm sorry Mum. It's just really hard for me to be calm and patient all the time now, especially when I'm tired or feeling overwhelmed, or too many people are telling me to do too many things. I need to focus on just one thing at a time, and get into the zen of doing it (stacking the dishwasher is so wonderful, as is unpacking the cutlery).
I feel so blessed that I know what I do about brain injuries, it helps me to understand what is happening, and helps me to appreciate how lucky I am that my tumours grew where they did. If they'd been reversed, I'd have comprehension difficulties and greater visual problems, as well as problems with my right hand. It still doesn't make it easier to manage the fatigue and irritability, or to educate my family - I know I need to rest, but it's hard to do so, and no matter how much I explain to Ben and the kids that I need to be given space and quiet, it's still hard for them to stop the long-term habits of asking me for help, or telling me what I need to do. I'd prefer to be asked what others can do to help me, to give me a sense of control in this. Losing a sense of control is one of the hardest things. To-do lists are great ways to regain a sense of control, or structure at least.
I had an interesting realisation the other day, but don't think I've shared here yet (my memory is a little unreliable now, I blame it on fatigue): Ever since I was a little girl, I was fiercely indpendent, and tried to do everything I could for myself. My mother encouraged it ("God helps those who help themselves". "Your legs are younger than mine") and lots of praise for helping around the house. I was apparently a child who just wanted to make everyone else happy. But in always doing things for other people, I wasn't that good in doing things for myself, in saying no to others, or in accepting help from other people. The last two months have made me aware of how important it is to be able to accept help from others, to accept their love and support, because in maintaining a fierce attitude of independence, I was closing my heart to love from others, and reducing the amount of love I could give in return. It was a way of protecting myself from potential pain, and fooling myself into thinking I was helping others - maybe I was, but without fully putting my heart into it. My heart feels open and safe now, and that's a lovely thing.
Wednesday, 30 October 2013
The problems with interpreting your own test data
Warning - highly technical post that will probably make most sense to neuropsychologists.
Baseline and premorbid assessments
We neuropsychologists love it when patients come to us with old psychological assessment data - it allows us to know what the person was like before something happened to their brain, and it allows us to measure change over time, if similar tests are used. We call it premorbid data, meaning pre-injury. It's particularly valuable in cases of people with abilities at either end of the spectrum, because there's a tendency to underestimate the premorbid abilities of very intelligent people, and to overestimate the prior abilities of below-average people. We have equations that estimate a person's premorbid abilities based on their age, gender, ethnicity, education, occupation, and other factors, but these are prone to error, and are not as good as a thorough baseline assessment from a time before the person had a brain condition.
In 1983, when I was 16, Mum and Dad paid for my sister and I to undergo an assessment with a firm of organizational psychologists in Melbourne called Chandler and McLeod. My friend Libby Sculthorpe had
benefited from their career advice, and I was vacillating between wanting to do medicine, art and music (just for the joy of it), and something to help save the planet from global warming. I wanted to do medicine to
help people, but hated chemistry, and everyone I knew who wanted to do medicine seemed to want to do it because their father had done it, or to make money, or to get the title Doctor, but not to help people. I thought I had the wrong motivation, but found that hard to believe. I had the idea (I was only 16) that I could combine my love of travel and the wide open spaces with medicine and work with the Royal Flying Doctor Service, but my older cousins, who had worked in the mines and mining towns in WA, did their best to deter me from studying medicine, saying that women were treated badly out there, that Med was hard, that it would be a hard life.
We did the testing in the September school holidays, just after a one-week school trip from Alice Springs to Melbourne via Ayers Rock, Coober Pedy, and Adelaide. My sister and I still had dust from camping in our clothes, and felt quite out of place wearing our Red Centre gear in some fancy rooms in Kew. We were tested over a couple of days (yes, days) on a range of intelligence (?Stanford-Binet, Mazes, problem-solving), aptitude (clerical), personality, and vocational interest tests (the latter were so transparent, it was hard not to rig the answers). On attending for feedback, the psychologist seemed surprised that the results didn't match the impression she had gained from our unfashionable clothing and grungy appearance. (1983 was a very bad year for my hair. I don't know what possessed me to try to make it stand up on top (Duran Duran?), but it
was terrible).
The report, which is somewhere in our attic, said all of my scores on a range of intelligence, problem-solving, aptitude, clerical-skil, and other tasks were extremely high for my age group (95th - 99th percentile), which meant I would be able to do just about anything I wanted to, career wise. She said that careers in medicine, architecture, and science, would be open to me. Given my strong interests in music, art, English, humanities, biology, medicine, and helping others, she said that if I really didn't want to do medicine, perhaps I could consider a career in architecture ("which was becoming increasingly client-focused"), or clinical neuropychology, of which I hadn't heard. She said there was one course, at the University of Melbourne: I would have to do an honours degree in psychology, followed by a 2-year Masters or PhD in Clinical Neuropsychology. The honours degree could be in Arts or Science, which would allow me to indulge my interests in the arts and humanities with my interests in medicine without chemistry (via neuropsych) into a career that would help people. And it would take a minimum of 6 years of full-time study, compared to 7 at that time for Medicine.
Baseline and premorbid assessments
We neuropsychologists love it when patients come to us with old psychological assessment data - it allows us to know what the person was like before something happened to their brain, and it allows us to measure change over time, if similar tests are used. We call it premorbid data, meaning pre-injury. It's particularly valuable in cases of people with abilities at either end of the spectrum, because there's a tendency to underestimate the premorbid abilities of very intelligent people, and to overestimate the prior abilities of below-average people. We have equations that estimate a person's premorbid abilities based on their age, gender, ethnicity, education, occupation, and other factors, but these are prone to error, and are not as good as a thorough baseline assessment from a time before the person had a brain condition.
In 1983, when I was 16, Mum and Dad paid for my sister and I to undergo an assessment with a firm of organizational psychologists in Melbourne called Chandler and McLeod. My friend Libby Sculthorpe had
benefited from their career advice, and I was vacillating between wanting to do medicine, art and music (just for the joy of it), and something to help save the planet from global warming. I wanted to do medicine to
help people, but hated chemistry, and everyone I knew who wanted to do medicine seemed to want to do it because their father had done it, or to make money, or to get the title Doctor, but not to help people. I thought I had the wrong motivation, but found that hard to believe. I had the idea (I was only 16) that I could combine my love of travel and the wide open spaces with medicine and work with the Royal Flying Doctor Service, but my older cousins, who had worked in the mines and mining towns in WA, did their best to deter me from studying medicine, saying that women were treated badly out there, that Med was hard, that it would be a hard life.
We did the testing in the September school holidays, just after a one-week school trip from Alice Springs to Melbourne via Ayers Rock, Coober Pedy, and Adelaide. My sister and I still had dust from camping in our clothes, and felt quite out of place wearing our Red Centre gear in some fancy rooms in Kew. We were tested over a couple of days (yes, days) on a range of intelligence (?Stanford-Binet, Mazes, problem-solving), aptitude (clerical), personality, and vocational interest tests (the latter were so transparent, it was hard not to rig the answers). On attending for feedback, the psychologist seemed surprised that the results didn't match the impression she had gained from our unfashionable clothing and grungy appearance. (1983 was a very bad year for my hair. I don't know what possessed me to try to make it stand up on top (Duran Duran?), but it
was terrible).
The report, which is somewhere in our attic, said all of my scores on a range of intelligence, problem-solving, aptitude, clerical-skil, and other tasks were extremely high for my age group (95th - 99th percentile), which meant I would be able to do just about anything I wanted to, career wise. She said that careers in medicine, architecture, and science, would be open to me. Given my strong interests in music, art, English, humanities, biology, medicine, and helping others, she said that if I really didn't want to do medicine, perhaps I could consider a career in architecture ("which was becoming increasingly client-focused"), or clinical neuropychology, of which I hadn't heard. She said there was one course, at the University of Melbourne: I would have to do an honours degree in psychology, followed by a 2-year Masters or PhD in Clinical Neuropsychology. The honours degree could be in Arts or Science, which would allow me to indulge my interests in the arts and humanities with my interests in medicine without chemistry (via neuropsych) into a career that would help people. And it would take a minimum of 6 years of full-time study, compared to 7 at that time for Medicine.
The thought of leaving Tasmania for the anonymity of Melbourne was exciting. I would just be Fiona Bardenhagen, not "a Bardenhagen from Lilydale," linked inextricably in Northern Tasmania to Dad's large extended family, which the general store (set up in 1888 by the two original immigrant brothers, Luder and Wilhelm), a saw mil (set up by Granddad, Harvey Vernon Bardenhagen(HVB)), a petrol station (Est. HVB, 1925), and the school-bus run in a small town north of Launceston, as well as many uncles, aunts, and cousins in education and business around the north of the state. I'd be just me in Melbourne. No-one would know or remember me from school, and I'd able to forge my own identity, to find out who I was, away from all the assumptions of strangers. How liberating!
I found my WAIS-IV and WMS-IV results from 2009 the other day. One of my former students had kindly agreed to put me through the tests when they were released in Australia, before I had done them. We did it over a couple of weekends at her house - I always like to have the experience of being on the patient' s side of the testing, so I can know what it's like for them to go through the new tests. Of course, most of our tests are modified versions of the old ones, so there's a big advantage to a psychologist, who knows the answers to the old questions, and knows the strategies for the new items, but sometimes there are completely new subtests or items that allow the experienced psychologist to get an idea of how they're faring on tests of memory or cognition. In most of the new WAIS-IV and WMS-IV, that didn't apply. There were a few completely new subtests, but they loaded with old subtests so that my index and IQ scores couldn't really be taken as a measure of my true abilities - too much prior knowledge and practice effects. So when it said my WAIS-IV IQ and my General Abililty Index were both over the 99.9th percentile, I thought this was probably an overestimation, that I wasn't entitled to those scores, that they were due to my familiarity with the tests predecessors over the past 20 years - I had been tested by other students on the WAIS-R and WAIS-III in the past, but hadn't got to see or keep my scores, and was sure I hadn't done so well. I forgot that my abilities had been over the 95th percentile for my age in 1983. In hindsight, maybe the overestimation was 5-10 percentile points.
Thanks for reading. Feel free to comment or email.
X
I found my WAIS-IV and WMS-IV results from 2009 the other day. One of my former students had kindly agreed to put me through the tests when they were released in Australia, before I had done them. We did it over a couple of weekends at her house - I always like to have the experience of being on the patient' s side of the testing, so I can know what it's like for them to go through the new tests. Of course, most of our tests are modified versions of the old ones, so there's a big advantage to a psychologist, who knows the answers to the old questions, and knows the strategies for the new items, but sometimes there are completely new subtests or items that allow the experienced psychologist to get an idea of how they're faring on tests of memory or cognition. In most of the new WAIS-IV and WMS-IV, that didn't apply. There were a few completely new subtests, but they loaded with old subtests so that my index and IQ scores couldn't really be taken as a measure of my true abilities - too much prior knowledge and practice effects. So when it said my WAIS-IV IQ and my General Abililty Index were both over the 99.9th percentile, I thought this was probably an overestimation, that I wasn't entitled to those scores, that they were due to my familiarity with the tests predecessors over the past 20 years - I had been tested by other students on the WAIS-R and WAIS-III in the past, but hadn't got to see or keep my scores, and was sure I hadn't done so well. I forgot that my abilities had been over the 95th percentile for my age in 1983. In hindsight, maybe the overestimation was 5-10 percentile points.
Looking at the index scores, there was a bit of variability:
Verbal Comprehension (VCI): 143 (but lots of familiar test items. Can't remember how many new items)
Subtests (age-scaled score, %ile rank):
Similarities 17, 99,
Vocab 18, 99.6;
Information 16, 98.
I didn't feel I was entitled to those scores, having given the tests many times and knowing most of the answers.
Perceptual Reasoning (PRI): 148 (lots of familiar items again, 2/4 new subtests)
Subtests (age-scaled score, %ile rank):
Block Design 19, 99.9 (easy peasy after giving it for 19 years
Matrix Reasoning 19, 99.9 (I love this test, the new items were fun and challenging)
Visual Puzzles 17, 99 (a new subtest, lots of fun)
Figure Weights 16, 98 (new subtest, a little challenging, but fun)
Working Memory (WMI): 139
Subtests (age-scaled score, %ile rank):
Digit Span 17, 99 (know most of these from memory)
Arithmetic 17, 99 (ditto, only a few new items)
Processing Speed (PSI): 124
Subtests (age-scaled score, %ile rank):
Symbol Search 16, 98 (familiar task)
Coding 13, 84 (I felt like a tortoise doing this, when I should have been like a hare - I had all the symbols in my memory, but I just couldn't write them as quickly as expected)
Cancellation 13, 84 (a new task, was surprised that I was slow at this too)
There were no clinically significicant differences between the various WAIS-IV index scores (no baserates <0.05, lowest was 14%). Coding was a relative weakness compared to the overall mean of subtest scores (baserate 5-10%). Should this have been a red flag to me? Why was I so slow on a very familiar task, especially when my clerical speed at age 16 was at the 99th percentile? I attributed it to age and fatigue. Now I know it might have been because there was a tumour growing in my brain.
My scores on the Wechsler Memory Scale-IV are also interesting in hindsight.
Auditory Memory (AMI): 137 (99%ile)
Visual Memory (VMI): 153 (>99%ile)
Visual Working Memory (VWMI): 109 (73%ile)
Immediate Memory (IMI): 148 (99.9%ile)
Delayed Memory (DMI): 147 (99.9%ile)
Subtests (age-scaled score, %ile rank):
Logical Memory I: 18, 99.6; LMII: 19, 99.6 (unfair advantage, knowing the stories from memory)
Verbal Paired Associates I: 16, 98; VPAII: 11, 63 (only 2/4 trials of VPAI given because the test was so boring and familiar, even with new items, missed two pairs on VPAI, didn't get them on VPAII, so probably an underestimate of my VPAII score)
Designs I: 19, 99.9; Designs II: 17, 99 (new subtest, lots of fun for my visually-oriented brain)
Visual Reproduction I: 15, 95; VRII: 19, 99.9 (old material, unfair advantage)
Spatial addition: 13, 84 (new subtest, found it difficult - contributes to VWMI score)
Symbol span: 10, 50 (new version of old subtest. I feel surprised at this score, which contributes to VWMI, as I've never had trouble administering the test, but then I had a strategy for test administration, which was hard to apply to the new stimulus layout)
I remember being frustrated that I didn't get better than an age-scaled score of 13 (75th %ile) on digit-symbol coding, since I had the symbols almost memorised from years of scoring the test. I thought I should have blitzed it - I was getting scores over the 90th percentile for other tasks, some of them new to me, so why not that one? The other puzzling thing was a clinically significant weakness on the VWMI. I found the two tests that made up the Index very difficult, and only scored in the average range. The difference between my WMS-IV ViWMI and WAIS-IV Verbal Working Memory Index was clinically significant (occurring in <1% of the standardization sample), and was worse than expected than from my General Ability Index, but I attributed that to prior experience with the Verbal WMI and GAI tasks artificially boosting my scores on those indices. I thought that my weakness on the visual working memory index must just have been a sign of how difficult the task was, or measurement error, or the tendency of people with above-average abilities to regress to the mean on some tests - it's hard for people to be above average on everything. The higher a person's scores, the more likely there will be some scatter, and I thought my Digit Symbol and VWMI scored represented scatter, or sleep deprivation, or some strange effect of being tested by a friend.
The baserate of the difference between my actual and predicted VisualWMI was <1%, that is, it occurred in less than 1 in 100 people in the standardization sample. But that was using the GAI to predict my scores, and I thought that the GAI probably overestimated my abiliies. And I forgot about my testing from 1983, which showed test results above the 95th percentile for my age, including processing speed and clerical skill. The latter was above the 99th percentile. A drop to the 75th percentile should have struck me as significant, especially given my familiariity with the the task. The scores also showed that my Visual WMI was significantly weaker than expected from my PRI and Verbal WMI. It all makes perfect sense now.
I fell for the trap of underestimating the premorbid test scores of an above-average individual, even though I had premorbid data that would have demonstrated significant changes. Should I have sought a second opinion? Would anything have changed? Did I have a clinical history to suggest there were problems? Only recurrent right-sidede positional headaches that were almost always accompanied by a postnasal drip that responded to antibiotics and seeemed to fit the profile of sinus headaches. A bit of fatigue, irritability, disturbed sleep, difficulty answering questions when driving (divided attention) - nothing that other working mums didn't relate to. I did, sometimes, get stumped when doing presentations and came to very visual slides - it would often put me off my pace and it would take me a while to make sense of them. It happened most recently a week or two before my brain tumours were found, when I was giving a talk about neuropsychology for an APS careers night at UTas, and I put up a slide with a number of pictures of brain scans. One, ironically, was of a GBM, and I couldn't remember what it was. Life seems full of ironies like that.
Despite having a tumour growing in my brain, I've achieved a reasonable amount in the last few years. In 2009, I helped Simon Crowe organise a successful CCN conference in Melbourne. Our family moved to my home state of Tassie in 2010, and I started a new job as the first neuropsychologist at LGH. I became CCN chair in 2011, and feel I helped the national committee to achieve some important developments and directions. In 2012 my father passed away, which devastated me, but I rallied and I organised a very successful conference here in Launceston, which started the week my dear cousin Marita finally lost her struggle with cervical cancer. If I'd been diagnosed with the GBM and breast cancer earlier, I wouldn't have been able to do, or cope, with those things. Not that the CCN is as important as my life and my family, but they were things that contributed to the continued professional development of other neuropsychologists, and would have had flow-on effects to their patients and families. And they were very important to me. I can't go back in time and investigate my headaches differently. What's done is done, and we have to make the best of it,
I have a strong faith that everything is happening at a certain time for a certain reason, and that I just need to get through each moment without succumbing to fear, which can be a dark and all-encompassing gullet that could suck me to pits of despair. I broke out of it yesterday morning by facing the sunlight and embracing the golden light of hope. Hope will always be there.
Verbal Comprehension (VCI): 143 (but lots of familiar test items. Can't remember how many new items)
Subtests (age-scaled score, %ile rank):
Similarities 17, 99,
Vocab 18, 99.6;
Information 16, 98.
I didn't feel I was entitled to those scores, having given the tests many times and knowing most of the answers.
Perceptual Reasoning (PRI): 148 (lots of familiar items again, 2/4 new subtests)
Subtests (age-scaled score, %ile rank):
Block Design 19, 99.9 (easy peasy after giving it for 19 years
Matrix Reasoning 19, 99.9 (I love this test, the new items were fun and challenging)
Visual Puzzles 17, 99 (a new subtest, lots of fun)
Figure Weights 16, 98 (new subtest, a little challenging, but fun)
Working Memory (WMI): 139
Subtests (age-scaled score, %ile rank):
Digit Span 17, 99 (know most of these from memory)
Arithmetic 17, 99 (ditto, only a few new items)
Processing Speed (PSI): 124
Subtests (age-scaled score, %ile rank):
Symbol Search 16, 98 (familiar task)
Coding 13, 84 (I felt like a tortoise doing this, when I should have been like a hare - I had all the symbols in my memory, but I just couldn't write them as quickly as expected)
Cancellation 13, 84 (a new task, was surprised that I was slow at this too)
There were no clinically significicant differences between the various WAIS-IV index scores (no baserates <0.05, lowest was 14%). Coding was a relative weakness compared to the overall mean of subtest scores (baserate 5-10%). Should this have been a red flag to me? Why was I so slow on a very familiar task, especially when my clerical speed at age 16 was at the 99th percentile? I attributed it to age and fatigue. Now I know it might have been because there was a tumour growing in my brain.
My scores on the Wechsler Memory Scale-IV are also interesting in hindsight.
Auditory Memory (AMI): 137 (99%ile)
Visual Memory (VMI): 153 (>99%ile)
Visual Working Memory (VWMI): 109 (73%ile)
Immediate Memory (IMI): 148 (99.9%ile)
Delayed Memory (DMI): 147 (99.9%ile)
Subtests (age-scaled score, %ile rank):
Logical Memory I: 18, 99.6; LMII: 19, 99.6 (unfair advantage, knowing the stories from memory)
Verbal Paired Associates I: 16, 98; VPAII: 11, 63 (only 2/4 trials of VPAI given because the test was so boring and familiar, even with new items, missed two pairs on VPAI, didn't get them on VPAII, so probably an underestimate of my VPAII score)
Designs I: 19, 99.9; Designs II: 17, 99 (new subtest, lots of fun for my visually-oriented brain)
Visual Reproduction I: 15, 95; VRII: 19, 99.9 (old material, unfair advantage)
Spatial addition: 13, 84 (new subtest, found it difficult - contributes to VWMI score)
Symbol span: 10, 50 (new version of old subtest. I feel surprised at this score, which contributes to VWMI, as I've never had trouble administering the test, but then I had a strategy for test administration, which was hard to apply to the new stimulus layout)
I remember being frustrated that I didn't get better than an age-scaled score of 13 (75th %ile) on digit-symbol coding, since I had the symbols almost memorised from years of scoring the test. I thought I should have blitzed it - I was getting scores over the 90th percentile for other tasks, some of them new to me, so why not that one? The other puzzling thing was a clinically significant weakness on the VWMI. I found the two tests that made up the Index very difficult, and only scored in the average range. The difference between my WMS-IV ViWMI and WAIS-IV Verbal Working Memory Index was clinically significant (occurring in <1% of the standardization sample), and was worse than expected than from my General Ability Index, but I attributed that to prior experience with the Verbal WMI and GAI tasks artificially boosting my scores on those indices. I thought that my weakness on the visual working memory index must just have been a sign of how difficult the task was, or measurement error, or the tendency of people with above-average abilities to regress to the mean on some tests - it's hard for people to be above average on everything. The higher a person's scores, the more likely there will be some scatter, and I thought my Digit Symbol and VWMI scored represented scatter, or sleep deprivation, or some strange effect of being tested by a friend.
The baserate of the difference between my actual and predicted VisualWMI was <1%, that is, it occurred in less than 1 in 100 people in the standardization sample. But that was using the GAI to predict my scores, and I thought that the GAI probably overestimated my abiliies. And I forgot about my testing from 1983, which showed test results above the 95th percentile for my age, including processing speed and clerical skill. The latter was above the 99th percentile. A drop to the 75th percentile should have struck me as significant, especially given my familiariity with the the task. The scores also showed that my Visual WMI was significantly weaker than expected from my PRI and Verbal WMI. It all makes perfect sense now.
I fell for the trap of underestimating the premorbid test scores of an above-average individual, even though I had premorbid data that would have demonstrated significant changes. Should I have sought a second opinion? Would anything have changed? Did I have a clinical history to suggest there were problems? Only recurrent right-sidede positional headaches that were almost always accompanied by a postnasal drip that responded to antibiotics and seeemed to fit the profile of sinus headaches. A bit of fatigue, irritability, disturbed sleep, difficulty answering questions when driving (divided attention) - nothing that other working mums didn't relate to. I did, sometimes, get stumped when doing presentations and came to very visual slides - it would often put me off my pace and it would take me a while to make sense of them. It happened most recently a week or two before my brain tumours were found, when I was giving a talk about neuropsychology for an APS careers night at UTas, and I put up a slide with a number of pictures of brain scans. One, ironically, was of a GBM, and I couldn't remember what it was. Life seems full of ironies like that.
Despite having a tumour growing in my brain, I've achieved a reasonable amount in the last few years. In 2009, I helped Simon Crowe organise a successful CCN conference in Melbourne. Our family moved to my home state of Tassie in 2010, and I started a new job as the first neuropsychologist at LGH. I became CCN chair in 2011, and feel I helped the national committee to achieve some important developments and directions. In 2012 my father passed away, which devastated me, but I rallied and I organised a very successful conference here in Launceston, which started the week my dear cousin Marita finally lost her struggle with cervical cancer. If I'd been diagnosed with the GBM and breast cancer earlier, I wouldn't have been able to do, or cope, with those things. Not that the CCN is as important as my life and my family, but they were things that contributed to the continued professional development of other neuropsychologists, and would have had flow-on effects to their patients and families. And they were very important to me. I can't go back in time and investigate my headaches differently. What's done is done, and we have to make the best of it,
I have a strong faith that everything is happening at a certain time for a certain reason, and that I just need to get through each moment without succumbing to fear, which can be a dark and all-encompassing gullet that could suck me to pits of despair. I broke out of it yesterday morning by facing the sunlight and embracing the golden light of hope. Hope will always be there.
Thanks for reading. Feel free to comment or email.
X
Monday, 28 October 2013
Friday, 25 October 2013
Headaches and the benefits of hindsight
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.
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.
An excellent day
Thursday 24 October
A short post to say I'm feeling really good tonight!
A short post to say I'm feeling really good tonight!
I had an excellent day: the lovely spring weather and our beautiful garden helped, as did catching up with several lovely people from work at the the hospital before my treatment. My hair is growing back black and curly, I have eyebrows and eyelashes again, and I'm not feeling quite so nauseous and sedated from the anticonvulsant medication.
I didn't manage to have a nap today, but I did lie down and rest, and ordered pizza and roast chicken ribs for dinner - we haven't done it on a Friday for ages, and it saved me having to prepare anything, which is tiring.
Then I had the energy and ability to sit down and create an excel spreadsheet with all my prescription and supplemental and PRN medication on it, including the changes in doses of dexamethasone and anticonvulsants for the next few weeks. It will be reassuring to be able to tick them off when I take them, it's hard to keep up with all my medications at times.
It's possible my seizure was triggered by taking a double dose of one medication last week, so I need to be very careful. Having a proper drug chart will help :)
Thursday, 24 October 2013
Media, body image, cancer types, hope
25 October
I watched the first episode of "Jai'me, private school girl" yesterday, on ABC iView. It was horrifyingly true to life, like a distillation of all the awful things I saw and experienced in boarding school, from 1980-1983. The way she bullied the boarders, the definition of "quiche" (thighs mustn't touch) - it's horrible, and not at all funny. Thankfully, the nasty words about lesbians were not something on our radar back then, though there was a term when the favourite silly word was dildo - until a housemistress told us what it meant, and it was dropped like a hot potato. The show was like watching a train wreck in slow motion, and makes me so sad that girls are still cruel to girls, when we should be kind to each other. It wouldn't be funny, but it also makes part of me hope that the Jai'me character gets publicly humiliated, drawn, and quartered, as punishment for all the creatures like that who have inflicted such nastiness on other human beings. Interesting, I thought the rage at the bullies had gone away. Obviously not. Part of me still wants to turn into the incredible Hulk and smash them, but then I'd feel ashamed for losing control, for not turning the other cheek. Better to say "No, this behaviour is unacceptable." and walk away. And, on sleeping on it, I'm not sure that girls like Jai'me are fully aware of how destructive they are. They seem to come from a place of supreme self-righteousness, supported by the shallow image-based values of magazines, music videos, and popular culture, and have no insight into how destructive it all is on their self-image and self-esteem. Putting other people down is a good way to make you feel good about yourself. A bit like what the government is doing with asylum seekers (I feel another post developing about that whole issue).
If our society stopped putting do much value on superficial things like appearances, maybe we'd be kinder. Even media portrayals of cancer focus on the superficial, including the infuriating "Look Good, Feel Better" ads which simultaneously glamorise cancer while trivialising the seriousness of all cancers. They suggest that If you put on some makeup, you'll feel better, even if you're nauseous and fighting for your life. Yeah, sure. If you're lucky.
It was fun to go to the LGFB program before my treatment started. I felt okay, I'd only just started to lose my hair, the whole affair was like a girly learning to apply makeup function. Most of the women were in the early stages of treatment, few had lost their hair. But after 9 months of cancer treatment, I'm so tired, and I'd be pretty irritated to go now. I didn't have the energy or inclination to do the makeup thing during my breast CA chemo - it's pretty hard to put mascara on 7 eyelashes ;) I didn't even have the energy to juice the vegetables that I was supposed to be juicing each day.
It's nice to have eyebrows, eyelashes and hair again, it feels good to put on mascara again, but my hair is falling out in a big mangy patch above my right ear, and my scalp is sensitive there, and at the back. There's only so much that makeup can do. Clothes help, but I'm worried about spilling food on them with my new clumsiness and visual changes, so I'm being careful about wearing light colours when I might end up eating in them. I feel like I need an apron to eat in..
It was fun to go to the LGFB program before my treatment started. I felt okay, I'd only just started to lose my hair, the whole affair was like a girly learning to apply makeup function. Most of the women were in the early stages of treatment, few had lost their hair. But after 9 months of cancer treatment, I'm so tired, and I'd be pretty irritated to go now. I didn't have the energy or inclination to do the makeup thing during my breast CA chemo - it's pretty hard to put mascara on 7 eyelashes ;) I didn't even have the energy to juice the vegetables that I was supposed to be juicing each day.
It's nice to have eyebrows, eyelashes and hair again, it feels good to put on mascara again, but my hair is falling out in a big mangy patch above my right ear, and my scalp is sensitive there, and at the back. There's only so much that makeup can do. Clothes help, but I'm worried about spilling food on them with my new clumsiness and visual changes, so I'm being careful about wearing light colours when I might end up eating in them. I feel like I need an apron to eat in..
There's no such thing as a good cancer. And the promotion and services for some cancers means that other cancers get less attention and the patients feel like they're missing out. Sure, breast cancer is common, but all the focus on it in the media is annoying. It almost makes it glamourous - Kylie Minogue, Olivia Newton-John, Kerry-Anne Kennelly. They all survived, you can too!
The McGrath breast cancer nurses are a nice idea, but why shouldn't people with other cancers have dedicated nurses as well? Maybe they do in capital cities, but not in Launceston. It should be part of our standard oncology care. I've noticed deficiencies in coordinated care in the past few months, in terms of linking patients with available services. For example, it's up to us patients to investigate the new Cancer Support Centre. If they had given me an appointment, I'd have been there already, but I was so damned tired after my breast CA RT, there was no way I was going to go over the road to see what they might have for me.
I've heard of patients having melt-downs in waiting rooms because there isn't a specific nurse for their kind of cancer. There should be nurses, or better still, multidisciplinary teams comprising medical, nursing, and allied health staff, who follow patients with cancer from diagnosis to end of treatment. I appreciate that each kind of cancer has different issues, and that specialised nurses may be needed for lung/colorectal/breast/head/neck/other cancers, but they should be available. Even in regional centres. It's easy to feel lost in the system, to not be sure of what happens next. And I'm someone who works in the system! Imagine what it's like for a lay person.... It's not that hard to set up a system that provides education to patients and their families, links them in to available services, and also provides continuity of care through a central team to answer questions. It would just require some funding. The perennial problem - but this is where cancer fundraising efforts should go. Get rid of the pink ribbons and all the other colours, raise funds for support for all cancers, improve quality and continuity of care for all patients. It shouldn't be dependent on cancer type or gender.
My two oncologists have been fantastic, but I have felt like I've been pestering them at times, and I hate that. The staff in the emergency department and the oncology ward, and the chemo and radiation clinics have also been fantastic, but it's awful being a patient. I'm sick of getting sick, of needing other people to look after me, of being vulnerable. It's really making me swallow my pride and realise that I'm just as needy and vulnerable as everyone else, and that it's okay to need other people to look after me. It's not a sign of weakness to ask for help. Refusing to do so puts me at risk of adverse outcomes, and I want to avoid them at all costs. So I have to eat humble pie and rest when I need to, ask for help when I need to, and let go of my need to feel in control. That's hard for someone who has tried to do everything for herself since she was a toddler.
My perceptions of a gap in care might because Ben and I are being very proactive in seeking help and because we have a high degree of health literacy. I realised the other day that if I wasn't a neuropsychologist and able to read the medical literature, I think I'd be in a deep depression right now, worrying about my vision, my fatigue, my irritability, my sensitivity to light, sound, overstimulation, my confusion. I'd probably think I was sure to die in the next 12 months. No bloody way, unless I get run over by a truck. Which could happen to any of us.
I wonder how much outcomes are affected by patient perceptions of prognosis, and how well they're educated about their condition?. Research shows that mood and anxiety affect outcomes after stroke and other acquired brain injuries. I'm sure the same would apply to cancer. If you felt that your outlook is futile, then it would be so easy to succumb to the fatigue and nausea and to give up hope. I'm not going to do that. Fatigue, sedation, confusion, nausea - they're all temporary. They can be treated, or avoided with rest and other strategies. Giving up hope - that's a more difficult issue. My month of Dex-induced sleep deprivation gave me enough of a trippy experience to make up for a lifetime of avoiding all recreational drugs. Whether valid or not, I now have great faith in the divine golden light of love that is the common source of all life and creation, and I know that we are all unique souls who are connected by love and the light. The whole experience gave me a sense of calm, contentment, wonder, and bliss, and I relax into that feeling every time I have my treatment, and when I try to sleep. Sorry if I've lost the lot of you here, but I've seen the source of life, and it's non-denominational, non-cultural, non-religious. It's just love. It connects us all. All is going to be well, whatever challenges life throws at us, we will all be okay and united in love, as we are every day. We're just not that good at seeing it most of the time.
better go now before someone calls the men in the white coats :)
The McGrath breast cancer nurses are a nice idea, but why shouldn't people with other cancers have dedicated nurses as well? Maybe they do in capital cities, but not in Launceston. It should be part of our standard oncology care. I've noticed deficiencies in coordinated care in the past few months, in terms of linking patients with available services. For example, it's up to us patients to investigate the new Cancer Support Centre. If they had given me an appointment, I'd have been there already, but I was so damned tired after my breast CA RT, there was no way I was going to go over the road to see what they might have for me.
I've heard of patients having melt-downs in waiting rooms because there isn't a specific nurse for their kind of cancer. There should be nurses, or better still, multidisciplinary teams comprising medical, nursing, and allied health staff, who follow patients with cancer from diagnosis to end of treatment. I appreciate that each kind of cancer has different issues, and that specialised nurses may be needed for lung/colorectal/breast/head/neck/other cancers, but they should be available. Even in regional centres. It's easy to feel lost in the system, to not be sure of what happens next. And I'm someone who works in the system! Imagine what it's like for a lay person.... It's not that hard to set up a system that provides education to patients and their families, links them in to available services, and also provides continuity of care through a central team to answer questions. It would just require some funding. The perennial problem - but this is where cancer fundraising efforts should go. Get rid of the pink ribbons and all the other colours, raise funds for support for all cancers, improve quality and continuity of care for all patients. It shouldn't be dependent on cancer type or gender.
My two oncologists have been fantastic, but I have felt like I've been pestering them at times, and I hate that. The staff in the emergency department and the oncology ward, and the chemo and radiation clinics have also been fantastic, but it's awful being a patient. I'm sick of getting sick, of needing other people to look after me, of being vulnerable. It's really making me swallow my pride and realise that I'm just as needy and vulnerable as everyone else, and that it's okay to need other people to look after me. It's not a sign of weakness to ask for help. Refusing to do so puts me at risk of adverse outcomes, and I want to avoid them at all costs. So I have to eat humble pie and rest when I need to, ask for help when I need to, and let go of my need to feel in control. That's hard for someone who has tried to do everything for herself since she was a toddler.
My perceptions of a gap in care might because Ben and I are being very proactive in seeking help and because we have a high degree of health literacy. I realised the other day that if I wasn't a neuropsychologist and able to read the medical literature, I think I'd be in a deep depression right now, worrying about my vision, my fatigue, my irritability, my sensitivity to light, sound, overstimulation, my confusion. I'd probably think I was sure to die in the next 12 months. No bloody way, unless I get run over by a truck. Which could happen to any of us.
I wonder how much outcomes are affected by patient perceptions of prognosis, and how well they're educated about their condition?. Research shows that mood and anxiety affect outcomes after stroke and other acquired brain injuries. I'm sure the same would apply to cancer. If you felt that your outlook is futile, then it would be so easy to succumb to the fatigue and nausea and to give up hope. I'm not going to do that. Fatigue, sedation, confusion, nausea - they're all temporary. They can be treated, or avoided with rest and other strategies. Giving up hope - that's a more difficult issue. My month of Dex-induced sleep deprivation gave me enough of a trippy experience to make up for a lifetime of avoiding all recreational drugs. Whether valid or not, I now have great faith in the divine golden light of love that is the common source of all life and creation, and I know that we are all unique souls who are connected by love and the light. The whole experience gave me a sense of calm, contentment, wonder, and bliss, and I relax into that feeling every time I have my treatment, and when I try to sleep. Sorry if I've lost the lot of you here, but I've seen the source of life, and it's non-denominational, non-cultural, non-religious. It's just love. It connects us all. All is going to be well, whatever challenges life throws at us, we will all be okay and united in love, as we are every day. We're just not that good at seeing it most of the time.
better go now before someone calls the men in the white coats :)
Monday, 21 October 2013
Body image and self-esteem
(Written around the end if September)
I have felt fat and unattractive all my life, and have only just realised why, at the ripe old age of 46. Part of it stems from having a petite and acid-tongued grandmother who used to tell me "keep eating like that and you'll end up fat like your mother", part comes from being taller and larger than most other girls and women, and part comes from being told I took after my mother, who has been overweight (but happy) all my life, and part comes from my experiences living in a girls' boarding school.
I was teased in boarding school for my hips, I had a little bit of padding on them, but my stomach was always flat, even up until my pregnancies. I still remember one older girl at school saying, "you know, Bardenhagen, we've been talking about your legs, and they're okay up the the knees, but your thighs are terrible." Legs were the body parts to display in the early 1980s - short skirts were subtly hitched higher when we sat in the sun with the rare boys who we came in contact with, but my thighs were declared verboten, and I've spent my life hiding everything above my knees out of a sense of civic duty not to pollute the environment with the sight of thunder thighs.
There was terrible bullying in that boarding school. I was a sensitive kid who took criticism keenly, making a fun target for the bullies, and my trusting nature meant I was easy to take along for a ride and made to look a fool. The worst event was when three girls held me down in the boarder's common room one winter day and threatened to dack me. I think it started out innocently enough, with my cousin tickling me on the floor, but then two older girls saw the chance for some malicious fun, and took off my shoes and were tugging at my stockings, which they removed (laughing all the more because I may have been yelling that I was going to get them) and I was sure they were going to take off my undies as well, so I started to say that I had my period, which grossed them out and they stopped. The worst thing was that the common room was full of all the other boarders, who circled around and watched, and no-one spoke up in my defence. They seemed to look on in fascination.The younger ones were wide-eyed, and none of the older ones said anything - the two bullies were untouchable. Nothing was said to the housemistresses, and everyone acted as if nothing had happened. I'd learnt from previous experience that if I complained to the housemistresses about being treated badly, I would be told not to provoke bullying behaviour from others. It was my fault, in other words. I even had to write "I am a victim of circumstances" 100 times as a detention because the other girls in my room had played up, and the housemistress felt that I should do detention as well. Which meant getting up and out of bed, into full school uniform, and standing outside the Headmistresse's Office for half an hour or so, then doing lines the next day.
The near-dacking event affected my sense of safety and trust in the others, and has probably made me wary of certain forms of attention all my life. The other thing that has bothered me and affected my ability to love myself has been my life-long fear that I would become morbily obeses.
I had been a reasonably healthy weight for my height until 2007. I was in the 72-78kg range, the lightest I've ever been since fully grown was 67kg, after my post-honours trip to Bali and Lombok in 1989, after a year of walking everywhere (no car), and not eating well while finishing my thesis (often having only a milkshake for lunch because of long hours struggling with Fortran and SPSS in the computer lab at uni. Those were the days!). I started to gain weight in 2007 despite joining the gym and trying a couple of diets (Herbalife (which had helped me shed 8kg before our wedding), Lite'n'Easy (where calorie-controlled meals are delivered). It turned out that I had Hashimoto's hypothyroidism, which slows your metabolism, and causes weight gain, even when treated with thyroxine. The GP had reassured me that the weight gain would stop when I was diagnosed at the end of 2008, but I still managed to gain another 10kg, while going to the gym 3-4 times a week and watching what I was eating, so by the end of 2009 I was up to 96kg, which was what I reached during both my pregancies. 96kg and pregnant is much more enjoyable than 96kg and having to wear size 16 clothes and feeling like nothing you do will make a difference. I'm glad I have never reached 100kg, that would have been very depressing.
I was a slightly chubby kid in primary school and I loved my food. I remember being embarrassed at weighing 48 kg with a bit of a belly at age 10 (grade 4), though the boys' health record books tell me that's the 97th %ile for girls that age. I was also the tallest in the class, so I probably wasn't that overweight at all, I was just of good solid German stock from both sides of the family (mum's grandmother's name was Scheetz, pronounced Schates). I'm 175cm tall (5'9"), and have loved being able to reach things in high places, both in reality and symbolically, I guess. According to the child health record, that puts me at the 97th percentile for height for girls aged 18. And being in the 70-80kg weight range is in the 90th-97th percentile for girls aged 18, and I stayed in that range from the age of 16 to 40. So I've been beating myself up for years for being a size 14 who weighs over 70 kg, when it's utterly appropriate for my height! I can't believe I haven't looked that up before now! It's much more sensible than the whole BMI bulldust.
I think I was sensitised to feeling overweight as a kid because I could hear other kids mocking my mother for being overweight. It broke my heart because she's the most kind and generous spirit (albeit bossy and rigid at times), and it was awful to see girls giggling at her jiggling thighs as she went for a swim at the beach or the pool. I didn't like to see other girls laughing behind my mother's back.
5 October, 2013
OMG, we females are cruel to each other! Or at least, we were in the 1970s and 80s. It bothers me to learn that girls in year 3 at my kids' school are restricting their eating, aspiring to look like the handful of mothers who come to school in their black gym pants each morning. Maybe there are other little Fionas there who would like their mothers to look slim and beautiful as they think they should, because they idolise them so much, and the media tells us that all women should be slim and beautiful. Maybe there are other little girls who worry that they'll grow up to be fat and unattractive and somehow unlovable because their mothers would never wear gym clothes in public. Maybe, like me, they think they will grow up to have bodies like their mothers, because they've heard so often that they take after their mothers, and they want to be in all the good, nurturing ways, and the beautiful ways, but not in the body ways. Because they see how some mums are unhappy with their bodies, or that their mums would be a total embarrassment if they even tried on tight black pants. They want to have yummy mummies too, because the way we look is the most important thing in this superficial, vain society.
When I went over 90kg in 2009, I discovered a great range of clothes at Chelsea Design in that felt great, flattered my figure, and seemed a worthwhile splurge of some of my reduncancy package from Victoria University (I'm still so cross with that damned place for closing down our DPsych in Clinical Neuropsychology. Alan Tucker did a damned fine job of setting it up, and it was an honour and a joy to work there with him and Peter Dowling, Ada Kritikos, and Alexia Pavlis from 2003-2009.) I wore those Chelsea clothes as my work wardrobe for 3 years, and have handed them on to my cousin, who is getting continued compliments and joy from them. After my fish feast the other day, I bought myself four new tops and a cardigan, to wear with my beloved maxi skirts and a couple of linen pants to wear this summer, so I have my spring-summer wardrobe sorted. Very happy feeling!
21 October
Now that the thought of breast reconstruction is far off the radar, I've pulled out the berlei bra with the cushion-stuffing prosthesis, and am having a shot at looking like someone with two boobs. It's not too bad. My spring and summer clothes fit okay, and my forearm crutch is enough of a marker of strangeness for me. I don't really care about my thighs, only wish they'd feel stronger. More walking is in order. Funny how things change.
I was teased in boarding school for my hips, I had a little bit of padding on them, but my stomach was always flat, even up until my pregnancies. I still remember one older girl at school saying, "you know, Bardenhagen, we've been talking about your legs, and they're okay up the the knees, but your thighs are terrible." Legs were the body parts to display in the early 1980s - short skirts were subtly hitched higher when we sat in the sun with the rare boys who we came in contact with, but my thighs were declared verboten, and I've spent my life hiding everything above my knees out of a sense of civic duty not to pollute the environment with the sight of thunder thighs.
There was terrible bullying in that boarding school. I was a sensitive kid who took criticism keenly, making a fun target for the bullies, and my trusting nature meant I was easy to take along for a ride and made to look a fool. The worst event was when three girls held me down in the boarder's common room one winter day and threatened to dack me. I think it started out innocently enough, with my cousin tickling me on the floor, but then two older girls saw the chance for some malicious fun, and took off my shoes and were tugging at my stockings, which they removed (laughing all the more because I may have been yelling that I was going to get them) and I was sure they were going to take off my undies as well, so I started to say that I had my period, which grossed them out and they stopped. The worst thing was that the common room was full of all the other boarders, who circled around and watched, and no-one spoke up in my defence. They seemed to look on in fascination.The younger ones were wide-eyed, and none of the older ones said anything - the two bullies were untouchable. Nothing was said to the housemistresses, and everyone acted as if nothing had happened. I'd learnt from previous experience that if I complained to the housemistresses about being treated badly, I would be told not to provoke bullying behaviour from others. It was my fault, in other words. I even had to write "I am a victim of circumstances" 100 times as a detention because the other girls in my room had played up, and the housemistress felt that I should do detention as well. Which meant getting up and out of bed, into full school uniform, and standing outside the Headmistresse's Office for half an hour or so, then doing lines the next day.
The near-dacking event affected my sense of safety and trust in the others, and has probably made me wary of certain forms of attention all my life. The other thing that has bothered me and affected my ability to love myself has been my life-long fear that I would become morbily obeses.
I had been a reasonably healthy weight for my height until 2007. I was in the 72-78kg range, the lightest I've ever been since fully grown was 67kg, after my post-honours trip to Bali and Lombok in 1989, after a year of walking everywhere (no car), and not eating well while finishing my thesis (often having only a milkshake for lunch because of long hours struggling with Fortran and SPSS in the computer lab at uni. Those were the days!). I started to gain weight in 2007 despite joining the gym and trying a couple of diets (Herbalife (which had helped me shed 8kg before our wedding), Lite'n'Easy (where calorie-controlled meals are delivered). It turned out that I had Hashimoto's hypothyroidism, which slows your metabolism, and causes weight gain, even when treated with thyroxine. The GP had reassured me that the weight gain would stop when I was diagnosed at the end of 2008, but I still managed to gain another 10kg, while going to the gym 3-4 times a week and watching what I was eating, so by the end of 2009 I was up to 96kg, which was what I reached during both my pregancies. 96kg and pregnant is much more enjoyable than 96kg and having to wear size 16 clothes and feeling like nothing you do will make a difference. I'm glad I have never reached 100kg, that would have been very depressing.
I was a slightly chubby kid in primary school and I loved my food. I remember being embarrassed at weighing 48 kg with a bit of a belly at age 10 (grade 4), though the boys' health record books tell me that's the 97th %ile for girls that age. I was also the tallest in the class, so I probably wasn't that overweight at all, I was just of good solid German stock from both sides of the family (mum's grandmother's name was Scheetz, pronounced Schates). I'm 175cm tall (5'9"), and have loved being able to reach things in high places, both in reality and symbolically, I guess. According to the child health record, that puts me at the 97th percentile for height for girls aged 18. And being in the 70-80kg weight range is in the 90th-97th percentile for girls aged 18, and I stayed in that range from the age of 16 to 40. So I've been beating myself up for years for being a size 14 who weighs over 70 kg, when it's utterly appropriate for my height! I can't believe I haven't looked that up before now! It's much more sensible than the whole BMI bulldust.
I think I was sensitised to feeling overweight as a kid because I could hear other kids mocking my mother for being overweight. It broke my heart because she's the most kind and generous spirit (albeit bossy and rigid at times), and it was awful to see girls giggling at her jiggling thighs as she went for a swim at the beach or the pool. I didn't like to see other girls laughing behind my mother's back.
5 October, 2013
OMG, we females are cruel to each other! Or at least, we were in the 1970s and 80s. It bothers me to learn that girls in year 3 at my kids' school are restricting their eating, aspiring to look like the handful of mothers who come to school in their black gym pants each morning. Maybe there are other little Fionas there who would like their mothers to look slim and beautiful as they think they should, because they idolise them so much, and the media tells us that all women should be slim and beautiful. Maybe there are other little girls who worry that they'll grow up to be fat and unattractive and somehow unlovable because their mothers would never wear gym clothes in public. Maybe, like me, they think they will grow up to have bodies like their mothers, because they've heard so often that they take after their mothers, and they want to be in all the good, nurturing ways, and the beautiful ways, but not in the body ways. Because they see how some mums are unhappy with their bodies, or that their mums would be a total embarrassment if they even tried on tight black pants. They want to have yummy mummies too, because the way we look is the most important thing in this superficial, vain society.
When I went over 90kg in 2009, I discovered a great range of clothes at Chelsea Design in that felt great, flattered my figure, and seemed a worthwhile splurge of some of my reduncancy package from Victoria University (I'm still so cross with that damned place for closing down our DPsych in Clinical Neuropsychology. Alan Tucker did a damned fine job of setting it up, and it was an honour and a joy to work there with him and Peter Dowling, Ada Kritikos, and Alexia Pavlis from 2003-2009.) I wore those Chelsea clothes as my work wardrobe for 3 years, and have handed them on to my cousin, who is getting continued compliments and joy from them. After my fish feast the other day, I bought myself four new tops and a cardigan, to wear with my beloved maxi skirts and a couple of linen pants to wear this summer, so I have my spring-summer wardrobe sorted. Very happy feeling!
21 October
Now that the thought of breast reconstruction is far off the radar, I've pulled out the berlei bra with the cushion-stuffing prosthesis, and am having a shot at looking like someone with two boobs. It's not too bad. My spring and summer clothes fit okay, and my forearm crutch is enough of a marker of strangeness for me. I don't really care about my thighs, only wish they'd feel stronger. More walking is in order. Funny how things change.
Feeling better
Monday night, the kids are asleep after a particularly good rendition of Jack and the Beanstalk, clothes are ready for our trip to Hobart, and I'm feeling rested and more alert than I have in a while, though I still wasn't quite sure of the day.
We had a lovely weekend, Nathaniel and 7yo Ava playing in the cubby house on Saturday (keeping David out) while Ben and Umit busted themselves assembling the new trampoline (fits perfectly outside the kitchen window), me managing to get in and out of DEM in one night was a major achievement (getting seen by an emergency specialist locum who examined my fundi (for raised intracranial pressure was very reassuring!), and taking our visitors for a drive down the Tamar to the platypus and wombat house at Beauty Point, followed by lunch at a fish and chip shop by the river was lovely. Ava's mum, C. did a wonderful job of bossing me into submission while she tidied up the boys clothes, did some laundry, and stripped beds, and I felt rested and content when she and Ava left, though sad that their time here was so short, it was lovely to have their gentle, helpful female presence around. Thanks so much C, for everything. I hope we get a chance for all of our families to catch up and have some fun some day soon.
I saw the registrar this morning after my treatment, and managed to have a look at my CT scans from last week. There wasn't much oedema (swelling), and only a bit of scarring in the right, reported as being right temporal. The radiologist also reported a collection of blood in the left occipital region, but that is to be expected, and will get reabsorbed. The great news is that there was no tumour regrowth apparent, and no significant swelling, so the seizure last week was probably just from scar tissue in the right temporal region, explaining the aura of a metallic smell and taste, and the right-sided motor features and Jacksonian march of the seizure. After all those years of working in the epilepsy surgery program at St Vs and giving talks on TLE, I never thought I'd experience it myself. I hope I never have a seizure again, but I know exactly what I need to do to reduce my risk: take my anticonvulsants, get adequate rest, and avoid overstimulation. Which I will do after finishing this post :)
I sent a flurry of emails to my two oncologists and the rad onc registrar this morning, after finding a number of tabs open on my ipad with references that Ben had found about mulitple pathway approaches to beating GBMs. The problem with the mainstream Stupp protocol is that it relies on surgery followed by a single agent chemotherapy combined with radiotherapy. Even my breast cancer got more chemotherapy than that - FEC for the first part, followed by Doxetaxal for the second three cycles, followed by RT, followed by tamoxifen for 5-10 years. GBMs are far more deadly, and some of the articles talk about a "multiple lock" approach. It seems silly to rely on Temozolomide and RT alone when there are other options available. These links talk about some of them. They're pretty technical and probably confronting, so best for those of you with medical/neuropsych backgrounds and an ability to overlook the outcome stats (median just means 50% - median survival means 50% of people survive by this time - but 50% survive longer. GBMs aren't a frequent disorder, no matter what they say). I'm just so grateful that I can still understand these article, and that I have a husband who is able to tell me that Sodium Valproate (epilum), the anticonvulsant they put me on to prevent seizures, and which is now increased because I had one, does cause nausea and sedation. I'm going to find as many keys to as many locks as I can to beat this thing.
http://www.impactjournals.com/
http://www.oncologypractice.
http://www.uth.tmc.edu/
Last thoughs before I call it a night: I had a lovely afternoon, being babysat by my Aunty Julie, who sat on one couch and read about her new camera while I dosed on the other, and then enjoying the company of our wonderful neighbour, who brought the yummiest pumpkin soup and sat with the boys and me until Ben got home from peer review. I felt loved and well-rested, and then went and had a go at playing the piano. I could still do it!!! I managed to get through Mozart's simple Sonata in C (allegro), and Beethoven's Moonlight (first movement). My fingers know them so well, they just played along, I only got a little stuck if I tried to read and play at the same time. It was so good to be able to make music at the piano again. I've been enjoying playing ABC classic FM in the house during the day, and will pull out my old choral pieces to get myself singing again. A bit of Beethoven's 9th, or his Missa Solemnis, or Mahler's 8th, or Brahms German Requiem, or Bach's sublime Singet Dem Herrn - they will lift my soul to heaven and float me back down, fully healed, ready to fight another 50 years.
PS I have a heap of neuropsych-related powerpoint slides and other resources that I'd like to share. If anyone has any suggestions on an easy way to do this, please email me.
We had a lovely weekend, Nathaniel and 7yo Ava playing in the cubby house on Saturday (keeping David out) while Ben and Umit busted themselves assembling the new trampoline (fits perfectly outside the kitchen window), me managing to get in and out of DEM in one night was a major achievement (getting seen by an emergency specialist locum who examined my fundi (for raised intracranial pressure was very reassuring!), and taking our visitors for a drive down the Tamar to the platypus and wombat house at Beauty Point, followed by lunch at a fish and chip shop by the river was lovely. Ava's mum, C. did a wonderful job of bossing me into submission while she tidied up the boys clothes, did some laundry, and stripped beds, and I felt rested and content when she and Ava left, though sad that their time here was so short, it was lovely to have their gentle, helpful female presence around. Thanks so much C, for everything. I hope we get a chance for all of our families to catch up and have some fun some day soon.
I saw the registrar this morning after my treatment, and managed to have a look at my CT scans from last week. There wasn't much oedema (swelling), and only a bit of scarring in the right, reported as being right temporal. The radiologist also reported a collection of blood in the left occipital region, but that is to be expected, and will get reabsorbed. The great news is that there was no tumour regrowth apparent, and no significant swelling, so the seizure last week was probably just from scar tissue in the right temporal region, explaining the aura of a metallic smell and taste, and the right-sided motor features and Jacksonian march of the seizure. After all those years of working in the epilepsy surgery program at St Vs and giving talks on TLE, I never thought I'd experience it myself. I hope I never have a seizure again, but I know exactly what I need to do to reduce my risk: take my anticonvulsants, get adequate rest, and avoid overstimulation. Which I will do after finishing this post :)
I sent a flurry of emails to my two oncologists and the rad onc registrar this morning, after finding a number of tabs open on my ipad with references that Ben had found about mulitple pathway approaches to beating GBMs. The problem with the mainstream Stupp protocol is that it relies on surgery followed by a single agent chemotherapy combined with radiotherapy. Even my breast cancer got more chemotherapy than that - FEC for the first part, followed by Doxetaxal for the second three cycles, followed by RT, followed by tamoxifen for 5-10 years. GBMs are far more deadly, and some of the articles talk about a "multiple lock" approach. It seems silly to rely on Temozolomide and RT alone when there are other options available. These links talk about some of them. They're pretty technical and probably confronting, so best for those of you with medical/neuropsych backgrounds and an ability to overlook the outcome stats (median just means 50% - median survival means 50% of people survive by this time - but 50% survive longer. GBMs aren't a frequent disorder, no matter what they say). I'm just so grateful that I can still understand these article, and that I have a husband who is able to tell me that Sodium Valproate (epilum), the anticonvulsant they put me on to prevent seizures, and which is now increased because I had one, does cause nausea and sedation. I'm going to find as many keys to as many locks as I can to beat this thing.
http://www.impactjournals.com/
http://www.oncologypractice.
http://www.uth.tmc.edu/
Last thoughs before I call it a night: I had a lovely afternoon, being babysat by my Aunty Julie, who sat on one couch and read about her new camera while I dosed on the other, and then enjoying the company of our wonderful neighbour, who brought the yummiest pumpkin soup and sat with the boys and me until Ben got home from peer review. I felt loved and well-rested, and then went and had a go at playing the piano. I could still do it!!! I managed to get through Mozart's simple Sonata in C (allegro), and Beethoven's Moonlight (first movement). My fingers know them so well, they just played along, I only got a little stuck if I tried to read and play at the same time. It was so good to be able to make music at the piano again. I've been enjoying playing ABC classic FM in the house during the day, and will pull out my old choral pieces to get myself singing again. A bit of Beethoven's 9th, or his Missa Solemnis, or Mahler's 8th, or Brahms German Requiem, or Bach's sublime Singet Dem Herrn - they will lift my soul to heaven and float me back down, fully healed, ready to fight another 50 years.
PS I have a heap of neuropsych-related powerpoint slides and other resources that I'd like to share. If anyone has any suggestions on an easy way to do this, please email me.
Friday, 18 October 2013
Not the best week
I spent most of last week in hospital. I was muddle-headed on Monday, accidentally taking my lunch-time medications twice, and was worried that I'd doubled up on some medications in the webster pack I'd assembled for myself of prescription and supplementary medications. I pulled out a master list (18 tablets and capsules to take each morning) and checked each cell - sure enough, there were sometimes 10 Vitamin D tablets instead of 5, and a couple of times there were 2 Tamoxifen tablets instead of 1). I wondered how people with worse cognition than mine managed their medications, and was glad that the pharmacist was coming the next day to do a home medications review, and to look after dispensing my meds and supplements into a webster pack for me, it was so overwhelming.
On Tuesday, I felt horribly nauseous and had diarrhoea. Mum was taking me to my radiotherapy, but I texted ahead to see if I should go to emergency, I felt so awful. For the first time I could understand why some people refuse to continue with chemotherapy. Ben met us at the clinic. My rad onc said to come to the Holman Clinic, they could manage me quicker there. I had my radiation, and then was taken to a clinic room to lie down. I refused to enter the room because it had a strong and awful metallic smell, that only I could smell. The smell also permeated my mouth. I went into my rad onc's room, which was vacant, and the smell wasn't so bad, but it was still there. I wondered if I was having an aura, which is a warning people with epilepsy sometimes get before having a seizure. Auras can come like a funny taste or a smell, and I was getting both. My rad onc said the nausea was possibly due to cerebral oedema, so he sent me up for a CT brain, which scared the hell out of me, immediately thinking the worst and not wanting to discover that my tumours had been regrowing. After the CT, I asked the poor radiographer if she'd really scanned me, or if she was lying - I remember her putting the cannula in my orbital fossa for the contrast, I remember the hotness and metallic tastes of the iodine, but I don't remember having the scan - CT's are so silent compared to MRIs. I felt awful for being so paranoid, but I was so confused and so scared and I wanted to know my scans were okay. Back at the clinic, the good news was that there was no significant oedema or sign of tumour regrowth. I was told increase my dexamethasone back to 4 mg three times a day, and to increase my dose of sodium valproate.
Mum took me home where I rested, I think, and she left when Ben brought the boys home from school after 3. I was lying in bed when I felt my face begin to twitch on the left hand side, then my left arm began to twitch. I managed to call out to Ben, luckily he heard, and the last thing I remember was him calling an ambulance after telling David to run next door to get the neighbour to come and sit with him and Nathaniel while he went to the hospital. Next thing I knew, the ambulance man was there, Ben was telling him my left side had been jerking, my right side had been rigid, and that my face had started to turn blue during the seizure. He said I had been unconscious for about 2 minutes.
A bumpy stretcher-ride up our back staircase later, and I was in the ambulance on my way to the LGH. I can't remember much about the ride, or much about anything from the days that followed. I was in from Tuesday until Friday, and was pretty sedated and confused for much of the time. I lost my appetite, had bouts of nausea, and was surprised to sleep well despite the increased dexamethasone. I asked to see the neurologist, who said to increase my dose of Epilum (sodium valproate) from 200 tds to 700 sustained release BD. It turns out that valproate can cause nausea and sedation, which settles after a month or so. Great.
I've gotten pretty good at accepting the things I cannot change, having courage to change the things I can, and finding the serenity to know the difference, but I hate feeling nauseous and sedated, like I do right now. It's really awful to feel like your guts are churning and that you might dry retch at any moment. It's also unpleasant to feel physically drained and mentally depleted. I feel like I'm having to push my clear thoughts through porridge in a sieve.
I spent Saturday night in emergency after spiking a temperature of 38 that evening. My full blood count was okay, and I was allowed to return home this morning, bruised from the attempt to cannulate the back of my right hand (the vein tissued again), and wondering if it's a good idea to drive to Hobart on Tuesday to see my neurosurgeon for the scheduled review. We were going to drive down after RT on Tuesday and stay overnight, doing the return 2.5 hour drive on Wednesday. Maybe we'll call him tomorrow and see.
I'd better sleep now. Ben is out the back assembling the new trampoline with the boys and our visitors, and last Tuesday was a important lesson to me in the importance of resting to avoid lowering my seizure threshold through fatigue. I'd been feeling so alert, so good; I'd been doing maybe too much around the house, sorting things, having fun. But I hadn't been resting enough, and it was just a seizure waiting to happen. Scar tissue from surgery can cause seizures, so the important thing is to not have another one. I need to be more patient, more gentle with myself, and to give in and rest more often.
I'm so glad I have a roster of friends and family coming to be my companion for all but the next week. A former student is here with her 7yo daughter for the weekend, and it's lovely to have another woman in the house to help with sorting the boys' clothes, doing the laundry, making tea, and just talk to. We had a fantastic lunch at Fresh, a vegetarian restaurant in Charles St, followed by a pleasant stroll and sit in Princess' Park, opposite, where the kids played hide and seek while we admired the old conifers and rhododendrons.
It's not going to be easy, but I can make it through this. The prayers and supports of so many people are behind me, and I want to do so much good when my treatment is over. I will be able to use my experience as a patient with my knowledge as a neuropsychologist to improve education, understanding and supports for patients and their families. I've wanted to help pepople all my life, andto understand brain disorders since I was maybe 12 - I didn't mean to go to this extent to do it, but if it makes a difference, It will be worth it..
Thanks for following this topsy-turvy adventure, and for the emails, cards, letters, and gifts people have sent. It's nice to be in your thoughts, and you're in mine too. I'd far rather be healthy and fancy-free than going through this, but they say that things like this are sent to make us stronger. It's certainly been transformative for me, and I hope to live many decades to be able to use this experience, and my knowledge, to help improve things for others.
On Tuesday, I felt horribly nauseous and had diarrhoea. Mum was taking me to my radiotherapy, but I texted ahead to see if I should go to emergency, I felt so awful. For the first time I could understand why some people refuse to continue with chemotherapy. Ben met us at the clinic. My rad onc said to come to the Holman Clinic, they could manage me quicker there. I had my radiation, and then was taken to a clinic room to lie down. I refused to enter the room because it had a strong and awful metallic smell, that only I could smell. The smell also permeated my mouth. I went into my rad onc's room, which was vacant, and the smell wasn't so bad, but it was still there. I wondered if I was having an aura, which is a warning people with epilepsy sometimes get before having a seizure. Auras can come like a funny taste or a smell, and I was getting both. My rad onc said the nausea was possibly due to cerebral oedema, so he sent me up for a CT brain, which scared the hell out of me, immediately thinking the worst and not wanting to discover that my tumours had been regrowing. After the CT, I asked the poor radiographer if she'd really scanned me, or if she was lying - I remember her putting the cannula in my orbital fossa for the contrast, I remember the hotness and metallic tastes of the iodine, but I don't remember having the scan - CT's are so silent compared to MRIs. I felt awful for being so paranoid, but I was so confused and so scared and I wanted to know my scans were okay. Back at the clinic, the good news was that there was no significant oedema or sign of tumour regrowth. I was told increase my dexamethasone back to 4 mg three times a day, and to increase my dose of sodium valproate.
Mum took me home where I rested, I think, and she left when Ben brought the boys home from school after 3. I was lying in bed when I felt my face begin to twitch on the left hand side, then my left arm began to twitch. I managed to call out to Ben, luckily he heard, and the last thing I remember was him calling an ambulance after telling David to run next door to get the neighbour to come and sit with him and Nathaniel while he went to the hospital. Next thing I knew, the ambulance man was there, Ben was telling him my left side had been jerking, my right side had been rigid, and that my face had started to turn blue during the seizure. He said I had been unconscious for about 2 minutes.
A bumpy stretcher-ride up our back staircase later, and I was in the ambulance on my way to the LGH. I can't remember much about the ride, or much about anything from the days that followed. I was in from Tuesday until Friday, and was pretty sedated and confused for much of the time. I lost my appetite, had bouts of nausea, and was surprised to sleep well despite the increased dexamethasone. I asked to see the neurologist, who said to increase my dose of Epilum (sodium valproate) from 200 tds to 700 sustained release BD. It turns out that valproate can cause nausea and sedation, which settles after a month or so. Great.
I've gotten pretty good at accepting the things I cannot change, having courage to change the things I can, and finding the serenity to know the difference, but I hate feeling nauseous and sedated, like I do right now. It's really awful to feel like your guts are churning and that you might dry retch at any moment. It's also unpleasant to feel physically drained and mentally depleted. I feel like I'm having to push my clear thoughts through porridge in a sieve.
I spent Saturday night in emergency after spiking a temperature of 38 that evening. My full blood count was okay, and I was allowed to return home this morning, bruised from the attempt to cannulate the back of my right hand (the vein tissued again), and wondering if it's a good idea to drive to Hobart on Tuesday to see my neurosurgeon for the scheduled review. We were going to drive down after RT on Tuesday and stay overnight, doing the return 2.5 hour drive on Wednesday. Maybe we'll call him tomorrow and see.
I'd better sleep now. Ben is out the back assembling the new trampoline with the boys and our visitors, and last Tuesday was a important lesson to me in the importance of resting to avoid lowering my seizure threshold through fatigue. I'd been feeling so alert, so good; I'd been doing maybe too much around the house, sorting things, having fun. But I hadn't been resting enough, and it was just a seizure waiting to happen. Scar tissue from surgery can cause seizures, so the important thing is to not have another one. I need to be more patient, more gentle with myself, and to give in and rest more often.
I'm so glad I have a roster of friends and family coming to be my companion for all but the next week. A former student is here with her 7yo daughter for the weekend, and it's lovely to have another woman in the house to help with sorting the boys' clothes, doing the laundry, making tea, and just talk to. We had a fantastic lunch at Fresh, a vegetarian restaurant in Charles St, followed by a pleasant stroll and sit in Princess' Park, opposite, where the kids played hide and seek while we admired the old conifers and rhododendrons.
It's not going to be easy, but I can make it through this. The prayers and supports of so many people are behind me, and I want to do so much good when my treatment is over. I will be able to use my experience as a patient with my knowledge as a neuropsychologist to improve education, understanding and supports for patients and their families. I've wanted to help pepople all my life, andto understand brain disorders since I was maybe 12 - I didn't mean to go to this extent to do it, but if it makes a difference, It will be worth it..
Thanks for following this topsy-turvy adventure, and for the emails, cards, letters, and gifts people have sent. It's nice to be in your thoughts, and you're in mine too. I'd far rather be healthy and fancy-free than going through this, but they say that things like this are sent to make us stronger. It's certainly been transformative for me, and I hope to live many decades to be able to use this experience, and my knowledge, to help improve things for others.
Friday, 11 October 2013
September 2013: A very lucky month to be diagnosed with GBM (if there ever was one).
Timing seems to be on my side again. Last month, when my brain tumours were discovered and removed, the second of two articles were published showing dramatically increased survival times for people with GBM who take Valcyte, a treatment for Cytomegalovirus (CMV).
This first article sums it up in plain language,
http://medicalletter.wordpress.com/2013/09/12/valganciclovir-for-glioblastoma/
My rad onc thinks the studies are very promising, and was happy to write a script for me yesterday. I've started taking Valcylte at lunchtime today. We're hitting it with everything we can - the dietary changes I've made (cutting out fructose, refined carbs, and other inflammatory sources, , more omega-3s, nuts, and seeds, good fats (butter, coconut, avocado) and protein I'm also taking daily vitamin and mineral supplements and some herbal remedies (double checked now by neurosurgeon, rad onc, and two pharmacists). I just hope that by boosting my nutritional intake, I'll get through the 7 days/week of Temodal chemotherapy for the 7 weeks of combined radiation and chemotherapy. I have to have blood tests each week, there is a risk of deep vein thrombosis and pulmonary embolism, so I need to keep active (walking up and down the stairs once a day is a strain, but I'm trying to do it), but not overdo it.
The Temodal causes a couple of waves of nausea each day, but a quick sniff of eucalyptus orondansetron seems to fix it (though I can only take ondansetron every 8 hours). I haven't vomited since Monday morning, when I took the Temodal without a prior antiemetic (anti-vomiting) drug, and the major side effects seem to be a mounting then suddenly draining fatigue, where it feels like I've either been hit by a tsunami, or that my energy is a bathtub of water that has suddenly drained away. I can fight it, but eventually have to like down, feeling weak and floppy in my arms, and try to quiet my monkey mind, which is chattering happily now that UncleVernon and Aunt Petunia are gone. Uncle Vernon was a restricting and misery-inducing companion, and I feel happier and more like myself than I have in years. I'm preparing a post about my cognitive testing results from 1983 and 2009 that should have warned me there was something amiss, along with my intuition, that was telling me to learn about brain tumours and cancer, even though I hardly ever saw any. That post it should be up next week.
I am so grateful for all that I have - I keep finding beautiful things that people have given to me over the years, squirrelled away for safekeeping. I'm bringing them out into the light and putting them on mantles and windowsills, and feeling the love of the people who gave them. Why hold on to things for "best" occasions? Every occasion should be one to rejoice in life's blessings, or to delight in the love and generosity of others.
I am also keenly aware of things that I have bought just because I could, not because I needed to, but because it somehow filled a need that wasn't being filled in my life. Things bought out of gluttony and greed. Things stored out of a sense of guilt at having spent so much on a garment (I still have my c.1990 $14,000 per annum PhD scholarship as my basic wage in my head, so anything over $40 feels expensive to me, but it's been something I've had to live with, as I've found very few professional garments that appeal to me for less than that, and neuropsychologists don't wear allied health uniforms).
I am packing up things that I bought for the wrong reasons, or have hoarded because I couldn't bear to part with them, (they cost so much and are still in good order - Mum and Grandma's Great Depression mentality), and giving them away with love to family and friends. I was going to do it this spring anyway. It feels so good to be clearing this energy and sharing my possessions with people I love. Collecting and hoarding things doesn't feel so good.
For those of you into reading abstracts and thinking about effect sizes and statistics, I'll provide some nitty-grtty things here. So if you're not into scientific abstracts, you can stop reading now.
xxx
There's probably more on the web, but I'm delighted enough with these two sources to devote my blogging energy to them today. I have a DVD to watch with the boys, and a free TSO ticket to enjoy tonight.
Here's the publication details and abstract of the first articles, published in March this year:
I particularly like the OS at 4 years for Val>6M vs controls. Greater than 25% is even better odds than 5.9%.
Then the second publication comes from the same group, who followed the patients over 5 years. The 25 patients who had received continuous CMV treatment had a median overall survival of 56.4 months (or 4.8 years, p<.001 - nice large effect size for a small sample!). Much better than the median survival for placebo.
You can read the NEJM letter here (I haven't cut and pasted the text because that would be in breach of copyright, and I'm not going to be naughty like that. I may have had a brain tumour, but I still know what is right and what is wrong)
http://www.nejm.org/doi/pdf/10.1056/NEJMc1302145
I don't like the fact that there were no patients at risk in either the <6 month or continuous groups at 72 months after diagnoses, but we're talking about very small samples here. So if there 1/5000 people with GBM live for decades or more, and if Valcyte improves longer term survival, and I'm in a reasonably good group from my gender, age <60, and health status, then adding Valcyte to my at times ovewhelming number of medications is worth it.
I've started taking it at lunchtime today, and am crossing my fingers that I won't get any side-effects. It isn't cheap, but my rad onc has applied to the manufacturer for them to give it to me at a reduced price on compassionate grounds, which has been provided to other GBM patients recently. There are also state subsidy schemes, and I may be able to claim from my private health insurance. We get so much of our healthcare for free, this is cheap compared to the cost of chemotherapy in the U.S.A., where medical expenses account for more than 50% of bankruptcies. It's lucky I'm getting monthly payments from my income protection insurance which will cover it if we can't get anything back, and it's very lucky that we're in a position to afford it. We think it's money well-spent.
This first article sums it up in plain language,
http://medicalletter.wordpress.com/2013/09/12/valganciclovir-for-glioblastoma/
My rad onc thinks the studies are very promising, and was happy to write a script for me yesterday. I've started taking Valcylte at lunchtime today. We're hitting it with everything we can - the dietary changes I've made (cutting out fructose, refined carbs, and other inflammatory sources, , more omega-3s, nuts, and seeds, good fats (butter, coconut, avocado) and protein I'm also taking daily vitamin and mineral supplements and some herbal remedies (double checked now by neurosurgeon, rad onc, and two pharmacists). I just hope that by boosting my nutritional intake, I'll get through the 7 days/week of Temodal chemotherapy for the 7 weeks of combined radiation and chemotherapy. I have to have blood tests each week, there is a risk of deep vein thrombosis and pulmonary embolism, so I need to keep active (walking up and down the stairs once a day is a strain, but I'm trying to do it), but not overdo it.
The Temodal causes a couple of waves of nausea each day, but a quick sniff of eucalyptus orondansetron seems to fix it (though I can only take ondansetron every 8 hours). I haven't vomited since Monday morning, when I took the Temodal without a prior antiemetic (anti-vomiting) drug, and the major side effects seem to be a mounting then suddenly draining fatigue, where it feels like I've either been hit by a tsunami, or that my energy is a bathtub of water that has suddenly drained away. I can fight it, but eventually have to like down, feeling weak and floppy in my arms, and try to quiet my monkey mind, which is chattering happily now that UncleVernon and Aunt Petunia are gone. Uncle Vernon was a restricting and misery-inducing companion, and I feel happier and more like myself than I have in years. I'm preparing a post about my cognitive testing results from 1983 and 2009 that should have warned me there was something amiss, along with my intuition, that was telling me to learn about brain tumours and cancer, even though I hardly ever saw any. That post it should be up next week.
I am so grateful for all that I have - I keep finding beautiful things that people have given to me over the years, squirrelled away for safekeeping. I'm bringing them out into the light and putting them on mantles and windowsills, and feeling the love of the people who gave them. Why hold on to things for "best" occasions? Every occasion should be one to rejoice in life's blessings, or to delight in the love and generosity of others.
I am also keenly aware of things that I have bought just because I could, not because I needed to, but because it somehow filled a need that wasn't being filled in my life. Things bought out of gluttony and greed. Things stored out of a sense of guilt at having spent so much on a garment (I still have my c.1990 $14,000 per annum PhD scholarship as my basic wage in my head, so anything over $40 feels expensive to me, but it's been something I've had to live with, as I've found very few professional garments that appeal to me for less than that, and neuropsychologists don't wear allied health uniforms).
I am packing up things that I bought for the wrong reasons, or have hoarded because I couldn't bear to part with them, (they cost so much and are still in good order - Mum and Grandma's Great Depression mentality), and giving them away with love to family and friends. I was going to do it this spring anyway. It feels so good to be clearing this energy and sharing my possessions with people I love. Collecting and hoarding things doesn't feel so good.
For those of you into reading abstracts and thinking about effect sizes and statistics, I'll provide some nitty-grtty things here. So if you're not into scientific abstracts, you can stop reading now.
xxx
There's probably more on the web, but I'm delighted enough with these two sources to devote my blogging energy to them today. I have a DVD to watch with the boys, and a free TSO ticket to enjoy tonight.
Here's the publication details and abstract of the first articles, published in March this year:
Int J Cancer. 2013 Sep 1;133(5):1204-13. doi: 10.1002/ijc.28111. Epub 2013 Mar 13.
Effects of valganciclovir as an add-on therapy in patients with cytomegalovirus-positive glioblastoma: a randomized, double-blind, hypothesis-generating study.
Stragliotto G, Rahbar A, Solberg NW, Lilja A, Taher C, Orrego A, Bjurman B, Tammik C, Skarman P, Peredo I, Söderberg-Nauclér C.
Source
Department of Neurology, Karolinska University Hospital, Sweden.
Abstract
Cytomegalovirus is highly prevalent in glioblastomas. In 2006, we initiated a randomized, double-blind, placebo-controlled, hypothesis-generating study to examine the safety and potential efficacy of Valganciclovir as an add-on therapy for glioblastoma. Forty-two glioblastoma patients were randomized in double-blind fashion to receive Valganciclovir or placebo in addition to standard therapy for 6 months. Magnetic resonance images were obtained before and immediately and 3 and 6 months after surgery to evaluate treatment efficacy by measuring contrast enhancing tumor volume (primary end point). Survival data were analyzed for patients and controls in explorative analyses to aid the design of future randomized trials. Trends but no significant differences were observed in tumor volumes in Valganciclovir and placebo patients at 3 (3.58 vs. 7.44 cm3, respectively, p = 0.2881) and 6 (3.31 vs. 13.75 cm3, p = 0.2120) months. Median overall survival (OS) was similar in both groups (17.9 vs. 17.4 months, p = 0.430). Patients could take Valganciclovir for compassionate use after the study phase. Explorative analyses showed an OS of 24.1 months (95% CI, 17.4-40.3) in patients receiving >6 months of Valganciclovir (Val > 6M) versus 13.1 months (95% CI, 7.9-17.7, p < 0.0001) in patients receiving Valganciclovir for 0 or <6 months, and 13.7 months (95% CI, 6.9-17.3, p = 0.0031) in contemporary controls. OS at 4 years was 27.3% in Val>6M patients versus 5.9% in controls (p = 0.0466). Prolonged OS in Val>6M patients suggest that future randomized trials are warranted and should evaluate whether continuous antiviral treatment can improve outcome in glioblastoma patients.
I particularly like the OS at 4 years for Val>6M vs controls. Greater than 25% is even better odds than 5.9%.
Then the second publication comes from the same group, who followed the patients over 5 years. The 25 patients who had received continuous CMV treatment had a median overall survival of 56.4 months (or 4.8 years, p<.001 - nice large effect size for a small sample!). Much better than the median survival for placebo.
You can read the NEJM letter here (I haven't cut and pasted the text because that would be in breach of copyright, and I'm not going to be naughty like that. I may have had a brain tumour, but I still know what is right and what is wrong)
http://www.nejm.org/doi/pdf/10.1056/NEJMc1302145
I don't like the fact that there were no patients at risk in either the <6 month or continuous groups at 72 months after diagnoses, but we're talking about very small samples here. So if there 1/5000 people with GBM live for decades or more, and if Valcyte improves longer term survival, and I'm in a reasonably good group from my gender, age <60, and health status, then adding Valcyte to my at times ovewhelming number of medications is worth it.
I've started taking it at lunchtime today, and am crossing my fingers that I won't get any side-effects. It isn't cheap, but my rad onc has applied to the manufacturer for them to give it to me at a reduced price on compassionate grounds, which has been provided to other GBM patients recently. There are also state subsidy schemes, and I may be able to claim from my private health insurance. We get so much of our healthcare for free, this is cheap compared to the cost of chemotherapy in the U.S.A., where medical expenses account for more than 50% of bankruptcies. It's lucky I'm getting monthly payments from my income protection insurance which will cover it if we can't get anything back, and it's very lucky that we're in a position to afford it. We think it's money well-spent.
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