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January 31, 2005
I got laughing so hard twice today that I was almost crying.
My tummy is still giving trouble (i.e., pain), but it seems to be slowly getting better. We’ve cut out all the non-prescription supplements I’ve been taking in an effort to give my gut a chance to sort itself out again. David Rose’s light blanket does seem to be helping it quite a bit at times.
I got laughing so hard twice today that I was almost crying. The first time was this evening when we were headed over to the Nave’s for dinner. We stopped to tell our landlord Warren that we’ll be away for ten days or so for my operation, so he can get into the house to sort out the floor that’s been trying to revert itself to its component elements. He got onto a great tale—as he always does about something or other—about a guy he used to work with hauling bananas. It was so funny that I ended up having to wipe my eyes. There was a single line of the guy’s about the chemicals on the bananas running down his back and into the crack of his bum “Causing Roundup mis-rectus� that really did it to me. Then just now I was lying in bed and remembered how my dad would always swerve to ensure that he flattened any cane toads on the road—as any good north-eastern Aussie does—and he’d always exclaim, “Wop! Bad luck!� when he got one. He’d do the same thing when he got one on the land with a stick or something. Anyway, again I got laughing so hard that Jennifer came in from another room to ensure that I wasn’t having a seizure or something. Well, I might be but it sure feels good to laugh so hard that I cry.
I noticed today that I’m really, really enjoying the kids. In a way I am playing more than ever with them, as I’m not working, but I’m also wiped out a lot and not much good then. But I’m really enjoying them so deeply now, whether I’m just watching their antics or having a burst of energy and chasing them all over the place. Such a delight they are in their utterly unique ways. What miracles are we.
The hospital called today to arrange pre-op stuff and Jennifer is very pleased with them, saying that they are being extremely thorough and at the same time human and light. We’ll spend a day in Brisbane a few days before the opp and I have three-hour(!) neuropsychology test. I guess they need to know how I speak now so that they can see how I’m going during and after. I believe that a speech pathologist will be present in the “procedure�. “Procedure.� What a fantastic euphemism.
Posted by Peter at 01:38 PM | Comments (0)
January 28, 2005
My jaw has been screwed since the biopsy.
The day before yesterday I had a long video chat with Dickon first thing in the morning, with sundry kids coming and going on each end. I managed to take my various medications and vitamins during, but didn’t manage to eat anything. Mistake. Something, presumably the zinc, threw my stomach completely and it’s still iffy two days later. My tummy can generally handle everything with ease, but when it goes wrong it goes really wrong. My dad was the same, I think. He’d always moan “Sugar! I just need some sugar!� I don’t know if it worked for him or not, but I don’t—and now can’t—eat sugar.
My jaw has been screwed since the biopsy. There was so much else going on that I didn’t really consciously notice that it just wasn’t getting better. I watched it in the mirror the other day and my jaw swings strongly to the left when I try to open it—not that I can get it open much more than the width of a finger, which makes eating very difficult. I’m trying a variety of things on it, because even though it will likely get beat up again in surgery I want it sorted prior. David Rose the acupuncturist came around again yesterday. He’s been treating me with heat and not needles, but I was planning to ask him about needles, as I trust him enough now—not to mention my willingness to suffer to health if necessary—that I thought I’d ask if he’s been avoiding them on my behalf. I didn’t need to; he asked if he could do needles on my jaw as soon as he arrived and I agreed while laughing at the eternal synchronicity of it all.
While I’m on the body, man my head itches! Its been itching now for over a week, and at first I thought that Chloe’s recent first lice experience had gotten me. That would be the first time in a quarter century that I had lice, but hey, I’m a parent now. Two louse checks later, no lice and a good-looking scalp. I’m suspecting detox, perhaps the detox baths I’m doing. Is it the head because that’s where the toxins are, or because it’s the only part of the body that doesn’t get immersed, or… Who knows? Damn itchy, though. Reminds me of being a kid in India. Scratch, scratch.
I’ve been thinking about the surgery and the Chinese herbs I’m taking from the doctor in Newcastle, Paul Parrit. Jennifer and I spoke with him recently—the first conversation I’d had with him—and his general position seems to be that his treatment is free-standing. He was fine for us to talk with a neurosurgeon so as to have a backup plan in emergency, but gave the general impression that he didn’t feel surgery to be necessary. So, given that I can supposedly take pills instead of having my brain poked around in with a knife while I’m awake, why on Earth would I opt for the latter?
Indeed.
Somehow, neither Jennifer or I can get a feel for Parrit. This isn’t helped by the Australian laws preventing doctors from discussing other patients or “giving false hope�, which leave Parrit with very little that he can say, even statistically. There’s also the strong “Yes� Hollingworth receives for the neurosurgeon and Brisbane, plus his initial direction not to travel for two months. Three weeks will be two months from when he said that. At the time, we thought we’d be flying within days and damn the torpedoes. But we could never find anywhere to fly to. Now we know why. Also, the medical intuitive in San Francisco that has me doing these detox baths said that she received a “High resonance for other treatments working well after detox is completed�. I started the last 20-day detox sequence yesterday. That’s three weeks. Hollingworth says three weeks. The neurosurgeon says two-three weeks. There is other synchronicity too, but it escapes me at present. Then there is what Jennifer and I feel. She feels a flow pulling us towards this experience. I perceive it more as a not-unpleasant inevitability; the somehow-obvious next step, along with little affirmatives whenever I think about it. I also feel that it has to be approached with totality. If the pre-operative MRI shows something that precludes or obviates the need for surgery, fine. But it has to be approached like I mean it. And I do, in peace. It comes down to perceiving and following the flow; it doesn’t feel like risking one’s life when control is an illusion anyway.
Last night Rupda cooked us dinner, and after dinner she got out my dad’s guitar and noodled around. She and I seem to know many of the same songs and so we easily sang together back and forth. It was nice to have someone making music to sing them to. Later, she told a hilarious story that I hadn’t heard and Jennifer and I laughed more than we have in some time. That felt really, really good. Later, I managed to recall all the lyrics to Waltzing Matilda. Not that there are very many, but it felt good to remember something for a change.
Posted by Peter at 11:56 AM | Comments (0)
January 25, 2005
I haven’t managed to journal in two weeks now.
I had a period lasting about six days of such intensity that I at times couldn’t even eat, let alone journal. After that I took days to calm down and then was having difficulty recalling details to journal. Now Jennifer is journaling the period, which should help me to be able to write my perspective, but she is also a breast-feeding mother who is simultaneously trying to save the life of her husband, so its slow going. The upshot is that two weeks have passed and I’ve been unable to journal that and so prevented from journaling anything else. So for now I’m dropping that and continuing with the more-present.
I’ve completed my transition to a large dose (1500mg twice daily) of Keppra for the seizures, which gets me off all other prescription pharmaceuticals. That’s cleaned up my usual seizure type and duration quite a bit, and now I’m finding that instead of seizures with a variety of symptoms lasting several minutes I instead lose reading comprehension, sometimes several times a day. This occurs right as I’m reading something and shue akdu she bfht sjeixdk skdi qkao comes back by itself after a short time passes. Like that. It’s very much like I’m reading a foreign language; I suddenly struggle to pronounce a word to myself and cannot comprehend it at all. If I really try hard I sometimes will manage and it goes “click� and makes sense. But then I have to do the same for the very next word and quickly forget the word I just struggled to get. Better just to go and do something else.
Leela came and made dinner a couple nights ago and while she was over I had a long period during which I really had trouble producing names, nouns, and time in conversation. Before, throughout, and after dinner I really struggled and most things I said were of the form “You know that time when those people did that thing and those other guys were there too?� And Leela would usually know what I was talking about, explaining that she talks like that all the time. I hadn’t had a long period like that of verbal difficulty before. It sucked. I wonder if the medication is a feature, or if its just deterioration?
David Hollingworth has returned from vacation and so Jennifer and I went to see him on Thursday (20/1). We spent an hour and a half with him and it was very positive. I can’t recall much detail, but I did get that when Jennifer had first told him that I was in hospital originally he’d wanted me to see a specialist and had wanted us to go to Brisbane. We had interpreted “Brisbane� as off-the-cuff, but that’s not how he operates. Apparently, he was hearing “Brisbane� in some fashion and so was a bit at a loss when we did go and were given such a dire diagnosis. When we told him that we had an appointment on Monday to see a new neurosurgeon in a different hospital he was very excited and said he was hearing superlatives like “Brilliant� about him. I think this is how Hollingworth operates and what he hears, I trust. He also said that it was time to get some light exercise.
I went to the beach with Sanjay two days ago and had a good time. It was the first physical exertion I’d had since Boxing Day. I can’t recall any time prior to this illness when I’d been so without exercise—let alone slept so much. Anyway, we had a good time trying to body-surf crap waves and I managed to get a bit sunburnt. It was great fun but I’ve been pretty wrecked since. Take it slow? Oh, right. Whoops.
Yesterday (Monday, 25/1) Jennifer and I made the trek to Brisbane yet again. We had a follow-up appointment with the head of neurosurgery at the Princess Alexandra Hospital, where I’d had my biopsy, followed by a meeting an hour and a half later with a neurosurgeon that had been recommended to Jennifer. Only the latter was important to us, and that turned out to be with good reason. The neurosurgeon that performed my biopsy, Peter Lucas, is taking 2005 to do research and is no longer at the “P.A.�, so our appointment was with his ex-boss, the head of neurosurgery. Shall I waste time talking about him? Not much. Suffice it to say, he obviously has “Dead� stamped across my forehead. We won’t be back to him.
The meeting with the other neurosurgeon was the opposite. He was nice, open, and after looking at my scans, willing to operate. He felt that my tumour was right on the cusp of requiring an awake craniotomy, and initially felt that awake would not be necessary but said that he wanted to sit with it. Jennifer and I both liked that he said that. After we talked about various details he said that he was now leaning towards awake as safer. I trust his instinct, and I also trust whatever I know will be helping the process to go well. I feel that he will be open to their guidance, albeit unwittingly.
Awake craniotomy.
Have a nice day!
I have felt for some time that the next step is to surgically de-bulk the tumour, and that this would likely occur awake. I should be clear: whilst I am awake. I would expect to be terrified, but I am not. This may change, but I was also not afraid the day of the biopsy. Since then I have become much more aware of the non-physical help that I have. I believe that they are here to ensure the most positive outcome. What that may look like is beyond my knowing at this time, but I trust them. Yes, that much. They tell me as I write this that they are love. I don’t have that quite right, but that is close enough for now.
Each time I have thought of the possibility of an awake craniotomy do it recently and asked for guidance yes I have felt that my question is immediately answered yes do it. I would be more comfortable if the guidance would appear in the form of glowing writing in the sky. But not that much more than I am now. Which I guess is why they don’t need to.
I have noticed that after having an extended break from it my anger is back. I managed with great effort to refrain from venting on Jennifer whilst driving to Brisbane yesterday. I did manage a week or so ago to get some out on the cane toads, but I think I might be over that now even if they are toxic to everything. Yuck.
I’ve recently been singing what little of Waltzing Matilda I can recall to Chloe, and tonight I got the lyrics and played it to her a few times. Although the lyrics are terribly sad and a call to arms, it is somehow simultaneously a fun song to which you can easily make up any lyrics on the fly and the result is reliably hilarious. Chloe did very well at it and we had a great time being silly.
Posted by Peter at 08:44 AM | Comments (0)
January 03, 2005
Detoxing is intense.
I spent yesterday utterly wiped out and mostly asleep. I wasn’t angry anymore—I think I was too tired. I was physically in quite a bit of discomfort in my abdomen. Today I started off feeling marginally okay physically, but still very tired and angry again. When I was awoken by the lunchtime drawer slamming and kid chaos I flew into a rage. Fortunately, I was sequestered in the bedroom so I didn’t murder anyone, but I did find a few things to hit. Hard. I hurt a wrist, but then visualized healing energy flowing through it and its fine. Don’t. Hurt. The body.
When I think back on my earlier experiences and exposures—India, hepatitis, parasites, extremely dangerous drugs, that girl who walked up to me in a bar and asked if she could kiss me and I agreed, fast food—it strikes me as sheer madness that I’ve never done a detox before. I mean, that’s just crazy. You should do one. They’re fun.
Later in the day I started feeling driven to do enemas again. Its becoming a daily fixture. But before I could Faisel called so I talked with him first. I was so curious what he was going to pull that I felt that I was in the way. Suddenly I had a momentary but crystal clear flash of my body, similar to the one I’d recently had of Jennifer. I saw my body utterly strong, utterly capable, invincible. It was calmly and methodically dealing with everything it needed to, just as it has always done. Its strength and power were awe-inspiring. The vision greatly encouraged me that my body is up the task of detoxifying itself of everything and anything. Faisel was very pleased that I seen that, and encouraged my to shower my body with love.
Posted by Peter at 11:13 PM | Comments (0)
January 01, 2005
Happy bloody new year.
Today sucked on a variety of levels. Where to begin complaining?
I’ll start with the physical. My stomach hurts, and alternates erratically between starvation and nausea. This is probably due to the detoxification effects of the various things prescribed by the cancer specialist getting into gear. I also stopped taking the prescription antacid (Pariet) last night. The last time I did that I ended up in the emergency room with the worst pain I have ever experienced. My GP said to go ahead and try stopping it, but “Don’t chuck the box in the bin� in case I need it. Don’t worry.
I’m also exhausted. I napped for hours shortly after getting up this morning, and again this afternoon. I’m still wrecked now and I’m sure I’ll sleep tonight too. This is probably partly due to the detox and partly because we’ve just increased my Keppra anticonvulsant dosage in preparation for switching from Dilantin entirely. Altering the Keppra dosage makes you as tired as having a seizure would. Take your pick.
And then there’s my mood. I’m seriously pissed off at nothing in particular and everything in general. Food is my particular peeve today. When there even is any in the house, I’m not supposed to eat it. And if it is something that is on the okay list its bloody boring. Not that any “cancer specialist� agrees on what one should or shouldn’t eat. Their general plan seems to be “Don’t eat anything fun. It might save you, but if not at least you won’t mind so much when you die.� Morons.
EMC2 says that the first two weeks or so of their thing triggers latent emotions. So, apparently I’m really bloody angry and am now having it released. Okay, I’m grateful. Dickheads.
Posted by Peter at 11:14 PM | Comments (0)