September 21, 2005
Back from the brink
I haven't written for a long time. I'm going to write about the time since I last did, as it was early June when I posted in my online diary. In the next days I received questions from readers, but I found myself unable to write or think. I started to have continuous bad headaches to the point where I was forced to stay in bed continuously, covering my eyes to reduce light and its additional pain, and barely able to eat at all. Being thin almost all my life (when I was a little kid my family nickname was Puku, which is New Zealand Maori meaning Big Belly), without my knowledge I was losing weight for the first time, becoming very thin and weak.
On 1 July I physically managed to get my regular biweekly MRI scan in Brisbane. Two weeks later on a Friday I couldn't even get out of bed and Jennifer managed to get me back to Brisbane for a scan that showed that the tumour was suddenly back and big. I was barely conscious and the hospital put me back into the neurosurgery department where I'd had my brain surgery in February and put me on a steroid to reduce swelling in the brain. This was so effective that by the time of the emergency repeat surgery a few days later on Wednesday I was back, clear, and ready for the first time in a month. The surgery was done by the same excellent neurosurgeon who did my previous surgery with me awake and present. As that had gone flawlessly he knew that he could do me asleep this time, which he did. That evening after surgery I was in Intensive Care, which is standard after operation. After weeks losing weight I was finally hungry, thanks to the steroid and the removal of most of the tumour. They gave me good food on request. And again immediately. :-)
Soon Jennifer and I were visited by a lovely and skilled surgeon who'd just been switched to be the assistant of the neurosurgeon only two days before my surgery and she was a part of mine. She was very nice and very clear--and had to tell me that she'd dropped a small section of my removed skull! It was put into cleansing fluid, but the neurosurgeon didn't want to take the chance of it becoming infected later so he opted to use metal instead. So now I have a metal bit of skull! No problems at all for me.
Again I healed so quickly that they let us go back home after only three days! I was feeling great. Once home I found that I slept less each night and even in the wee hours I'd chat with family and friends overseas who were in their local daylight times. I quickly came to the point of sleeping only two hours a night and although I'd lay down in the day I'd never even nap. I came up with amazing ideas night and day. On Friday the 29th… I went crazy. I could see the universe soul, mind, body--you name it. Jennifer called the surgeon to describe what was going on with me and was told to get me back immediately. On our drive I perceived everything in multiple ways and felt that I had complete perception of everything. I couldn't explain anything clearly to Jennifer, who managed to get me back to Brisbane to the emergency room our fastest ever.
In Emergency all the neurosurgery specialists came to see me. I told them that they needed to do all kinds of scans to see that I was magically healed. They listened to everything I said, and quickly and quietly cut the steroid that they had given me as it happens that I was having a rare side effect called steroid psychosis. By Monday I understood that my sanity had been totally messed with by chemical reactions and lack of sleep (wasn't that done in wars?), and I'm again grateful to the experts by it being fixed along with so many other things. They are excellent. I had my very first radiation that day, at another hospital in Brisbane. I have to remain on a maintenance dose of the steroid for the duration of radiation therapy but it seems OK.
That was five weeks ago. I've had five out of six weeks of radiation and really, really enjoy it--a thing I was opposed to earlier! It feels really good, really positive. After a few days of radiation we re-saw a medical oncologist. This time, he felt that I should take the new Temodal chemotherapy medication. This time, we felt the same way. I started that the next day, and as with radiation I find it very helpful and with very minor negative effects. (Temodal is the latest excellent American type of chemo for brain tumours. $2600 for five pills. As usual in Australia, the government pays almost all. We pay $5. :-)
The 90% of the tumour removed again, this time has left a loving, happy guy. The removed part had some nasty energy or something and I'm very happy if the hospital flushed it down a toilet. I feel great--in some ways better than I have since my first neuro surgery and in some ways better than most of my life. There are side effects from the surgery, but they are the same as occurred after my initial grande mal seizure; increased difficulties with names, nouns and memory. People's names do not come to me regardless of how well I know them. The few exceptions seem to be those I have known really well since we were kids and a handful of people I met as an adult who are very close to me. The reverse is true when I hear someone's name; I usually know who it is. With nouns, I really struggle to remember what they are. What's that animal? What's that town? What's that vegetable? It all flickers like a light; I remember or am reminded and then it's just gone again. Given the operations pluses, well worth it. I am joyous and happy.
Thrillingly I'm married to Jennifer, the amazing, the beautiful. She had to make decisions about what to do while I was unable to. Had I not had surgery I would have gone into a coma very soon… and then died. Our relationship is no accident. Now that I can think again (a bit!) I'm now seeing my two kids have grown enormously while I've been off the planet. A few weeks after the operation I saw the kids like I had been unable to for a long, long time. It was like seeing someone else's kids after months and we really see the growth. Chloe is five and a half and is just so… grown up. My goodness. Dylan turned two on 16 Sept. and understands language and speaks a lot. He loves vehicles, be they toys or real. He roars around playing outside, while Chloe plays with dolls inside. They're so different and yet so close. I'm enjoying life again, big time. Do I know the future, whether I live or die young? No. I just feel good, and the future will bring what it brings, when it brings it.
About ten years ago my dad and I purchased land here, long before I even met Jennifer. I had never owned land before. My dad eventually lived and died on the land, and as there's no real house we live in a rental a few minutes away. It is beautiful, and along with buying the land, marrying my partner and having kids and a few other things it is one of a brilliant moves in my life. Jennifer and I have always rented since we moved out from our parents, many years before we even met each other. My even buying land is a miracle.
Before I became ill, I was thinking one day about what to do. I should work on living on our land. Not having any money, I felt that helping people with their computers for a couple more years would eventually allow us to get a mortgage, but that there was nothing I could do right then. A few days later I had the grande mal seizure. A month later the tumour was diagnosed and we were told I'd die soon. I had never even thought of a house again. Days after the recent operation I just had it came: build a house, live on the land. It really feels full circle, like it is a related closure.
In my life I have never been able to ask for money. When I was a teen and first lived away from my parents, I could never even afford food or rent. I would wait as long as possible and then ask my dad for too little money, when he was happy to give me whatever. After this operation I feel very different in my life--including about money. For the first time I can ask. I have no bother about being refused. I have no judgement. We are all different. Some are rich, some are broke. Some are generous, some cling to everything. There's every combination. Some people are flat broke and generous. They'll give money they don't have, start a fundraiser, whatever. Some are very rich and will just keep it all and do nothing. Again, I have no judgement.
I had a friend who's a local architect come to our land and told him what I felt we needed so that I would know what it would cost. He estimated A$300,000 (US$230,000, €190,000). My request is this: I want a house for my family. I ask for donations so that we can build one. Please do whatever you feel to do, be it everything or nothing. Our home is going to happen. Watch.
I ask that people do what they feel to within a month's time. The http://www.peterlalor.org/ web site tells where we have bank accounts into which you can donate if you wish. If you like, let us know what you did. I'll let everyone know what happens.
Medically, the opinion is that my life is likely to be very short. If I am to die soon, I wish to only after I have my family taken care of, and to live and die on our land myself. In actuality, Jennifer and I may get to watch our kids grow up and go to school, become adults and move out. We talk about sitting together with grey hair. Who knows what will happen?
Some recent pictures and more are on the web site now. You'll see my interesting new--or is it old?--hairstyle... at the very least.
Posted by Peter at September 21, 2005 11:19 PM
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