I initially thought the chest pains were reflux, but they went across the base of my chest and up the middle, and I felt panicky. Not like any reflux I've ever had before. So I now know the metallic taste of the spray they put under your mouth, and I'll get to have another CT scan, to add to my growing list. I suspect it's just the stress of not knowing the diagnosis, the unformed fear, and the fact that my body knows it's in mortal peril, even though I'm doing my best to stay calm and accepting. I think the pain is my body telling me it knows I'm trying to pull the wool over it's eyes, and it's not going to fall for that. So I'm telling my body we're on the same team, that it's been doing a great job looking after me while I've been caught up in my head all these years, and that it's time that my body, heart, soul, and mind stop pretending we're co-tenants and merge together to be stronger and feel loved together. I felt a lot better last night, after a day of lots of loving visits and slightly trippy naps.
It's over a week since I slept though the night, and the sleep deprivation was catching up on me yesterday. I would dose off, and imagine that people were entering my room and talking to me, even though I knew they weren't there. There always a doctor who came and stood by my window (until I opened my eyes), and a man with a long beard and a short wife came to the door and started talking, but I opened my eyes and banished them as well. Ben wonders if the pain relief has been contributing, but I haven't had this reaction to Endone or digesic before. There could be something coming from the dexamethasone (steroid to reduce swelling), or the valproate (to reduce seizure risk), but it reminds me most of the trippy feeling I had as an undergrad who excelled in completing essays and submitting them five minutes before they were due, often going 36 hours without sleep.
So far tonight, I've snatched sleep from 103-1, and 1-3. I woke up when a dear old lady nearly fell out of bed. She's hard of hearing and seems lacking in insight (removed her IV cannula yesterday), and the nurses were having trouble keeping her safe while they mopped up some liquid on the floor that she was slipping on. So I got out of bed and went and held her hand until it was safe for her thin frame to move to the bathroom. She sang herself to sleep (old macdonald had some goats, apparently), and now is snoring with the others.
I took a punt on asking if they could look up my pathology results on the system. I figure I may as well find out in the middle of the night when I can't sleep. We know it's a glioma, and it will either be grade I, II, III or IV. I'd like to know what grade it is, and I think I can understand the pathology report myself, unless it's some weird new pathology invented just for me. The surgeon didn't come yesterday. I don't think he was avoiding me, surgeons get busy.
The worst kind of glioma is a GBM (glioblastoma multiforme) - I've dreaded them ever since I first saw one on a scan and heard the hushed, pessimistic voices of the surgeons. In my kids' gaming parlance, a GBM is a boss wave. If you gather your resources and plan for it, and if the battle terrain is good, even boss waves can be defeated. The survivor stories I found yesterday were from several people who have lived for many years, decades even, with GBMs. If the lesions are superficial (like mine), resectable (like mine), if the patient is under 60 and healthy (not too bad, despite the chemo), then the prognosis is much better than for large, deep, unresectable tumours.
So, assuming the worst case scenario of a GBM (reminds me of grievous bodily harm- or should that be grievous brain malignancy), I have an epic boss wave ahead of me. I will need to summon and collect my resources, including my support team of health workers, family, and friends, and be ready for a protracted and multi pronged battle to defeat it. Watchful vigilance will suppress any resurgences, and I will live to see my children grow up.
It's funny how this year has worked out. I wanted a year off from work to focus on restoring a sense of health and connection with my family: I got breast cancer. I've been feeling professionally burnt out when dealing with clients after dad died, because I felt it was futile, I couldn't save any of them. I could only help improve their lives through providing information and understanding about their conditions. I was worried about returning to work next year, because I feared that my longstanding tendency to over empathize with patients' plights had increased to the point where I wouldn't be able to manage the necessary boundaries between clinician and patient. I longed for an opportunity to do what I love in neuropsychology - talking to people about the brain, and the effects it can have on us and the people around us. I longed to advocate for people with brain disorders, so that the stigma and misunderstanding they experience is lessened, and so they can access services they need. I longed to continue to advocate for excellence in clinical neuropsychology, a marvellous, unique, brain-based psychology that is valued by every medical specialty who uses it, for the unique, patient-based insights we can bring.
All being well, that kind of advocacy might be the kind of thing I can do, once I get through the next round of treatment, and when I'm not being a wife and mother. I might not leave this world with a professorial publication record in neuropsychology, but I might just have the chance to make a difference to people's lives, which has always mattered most to me.
Strange how the universe provides opportunities. I'm going to accept them with an open heart, already grateful that the challenges and losses of the last few years have helped me appreciate the truly important things (love), and be less stressed about the little ones.
I keep getting the start of a joke in my mind: "did you hear about the neuropsychologist who got a brain tumour?"
I can't think of a funny punch line, though maybe this is wryly appropriate (given the guilty giggles of my family at the thought)
"She was glad it was on the right, it would have driven her mad if language had been affected".
Love and peace to all.
