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.
