Hello again,
I found my first couple posts were a bit dark and somber. Such a tone is hard to avoid when trying to share fully the experience of confronting cancer, but it is far from a full summary of my experience. That's what I hope to share a bit today. I'm going to make an effort to go for an honest, thorough, full disclosure of what a day for me is like right now. It'll be put together through a few posts, and now I've got a camera so I should be able to add some pictures.
Wake up: 600 am. The stomach is ever so slightly discomforted, but nothing serious. Thanks to the 3+ L of water I drink through the night to keep the mouth from feeling dry, I do have to take a bit of a leak though, and that means it's time to get up. I'm out of bed, and since I'm up I take a Zantac, helping with the minor acid reflux I'm dealing with. Next I lie back down a while. Something that's been different since being on chemo is what getting up is like. I used to wake up and be instantly firing on all cylinders. It's a habit I had since a child, but that was just reinforced by spending my college summers in tree planting camps. These days though when I wake up my metabolism is turned right off. When I get up first, I get cold almost immediately, and have to go lie down awake and insulated for a few minutes to let the engine warm up and get going again. It's strange, but now that I've learned how to let my body do what it needs, it really doesn't take away from my day.
Next thing, time to start the fire and drink some hot prune juice. Starting the fire is fun. I find it hugely therapeutic to have a fire heated house. Propping up the kindling, balling up some newspaper, and watching it go is a relaxing part of the day. Turning on the generator to get the lights going after isn't as fun, but it's actually still kind of satisfying. It feels good to feel like I'm camping.
The prune juice is a necessity because of the type of anti-nauseant I'm taking. It pretty much shuts down my innards, being the same type they use before surgery. (Ondacetron). I haven't had to take that one always, it's the more serious anti nauseant of the two I've been given, but my diet adjustments and/or the chemo have led to some acid reflux, which on the first night of chemo compounded with the stomach irritation from chemo, and the mild throat irritation from smoking so much weed, to lead me to throw up a good bit. That's an even bigger no-no than usual with chemo, (although when I did it was long enough after to be safe thankfully) so I'm taking a strong preventative approach to avoid allowing a pattern of that to develop. That's a warning I took real note of from my first oncology nurse: allowing yourself to vomit or your pattern to break makes it easier to happen again. An interesting note is my neurologist feels the same way about seizures.
Anyways, that said and done, the "business" of the morning is taken care of and I can relax. I make a coffee, roll up a big fat doobie with a nice line of hash along it, and sit down by the computer while I wait for the sun to rise. Today I've managed to make use of that time, and put this down on paper. Alot of days I just read, think, listen to the news, and scheme plans.
Next though is the day. Today I have quite a few things on the list. First and foremost is NS power is coming to assess the site and we're going to have to plan our power hookup. I'll find out today if and where I'm moving my house, how many trees and which trees I'm going to need to fall to get the power lines in, and what kind of cost is going to add up. I'm hoping as well to get a bunch of good, camera pictures of this property, this country, and what I'm doing out here.
For now, I think I'm going to get out there, get some morning shots, and a bite to eat. I'll be back later on!
An attempt to share the experience of confronting cancer, and trying to live a full life while doing it.
Photo Galleries
The Medical Basics
The Cause: Type 2a Astrocytoma. Growth history very slow. Age unknown.
The Problem: Epilepsy. Minor seizures initially triggered by a very light concussion, which returned over time briefly overcoming Keppra and giving me regular seizures for a few weeks. Stable for 6+ months again now, since day 3 of chemo:
The Medicine:
Keppra: 1500 mg 2xdaily - the basic seizure stopper
http://en.wikipedia.org/wiki/Levetiracetam
The Problem: Epilepsy. Minor seizures initially triggered by a very light concussion, which returned over time briefly overcoming Keppra and giving me regular seizures for a few weeks. Stable for 6+ months again now, since day 3 of chemo:
The Medicine:
Keppra: 1500 mg 2xdaily - the basic seizure stopper
http://en.wikipedia.org/wiki/Levetiracetam
Temodal-165mg/day, 21 on 7 off. The chemo. A newer, more specifically targeted type of chemotherapy.
http://en.wikipedia.org/wiki/Temozolomide
Medical Marijuana - 1g/day edible capsules of refined resin cooked into coconut oil. I also smoke regularly, but recognize that as more of a comfort component. (Smoking is only "medically" justifiable as to be comparable with edible when a quick restoration of levels is needed IMO)
That's a very basic summary. A couple points I need to make: Do NOT read the stats on Astrocytoma and freak out. Mine is so slow growing it took 3 years for them to catch the sign on MRIs, and there's an interesting and complicated potential differentiating point with childhood initial growth. Otherwise, I think the M.M. will need a longer discussion
http://en.wikipedia.org/wiki/Temozolomide
Medical Marijuana - 1g/day edible capsules of refined resin cooked into coconut oil. I also smoke regularly, but recognize that as more of a comfort component. (Smoking is only "medically" justifiable as to be comparable with edible when a quick restoration of levels is needed IMO)
That's a very basic summary. A couple points I need to make: Do NOT read the stats on Astrocytoma and freak out. Mine is so slow growing it took 3 years for them to catch the sign on MRIs, and there's an interesting and complicated potential differentiating point with childhood initial growth. Otherwise, I think the M.M. will need a longer discussion
Getting in Touch
Hey,
I just wanted to be clear to everyone that I'm up for talking about things if you have questions. This message is most important not to my friends and those familiar to me but to anyone who stumbles upon this or is handed it, and is in a situation where they relate to this a bit closer to the heart and would perhaps like to ask some questions, or just vent some of their own story. Feel free to reach me.
Easiest is email: davemjmurphy@gmail.com, but I'm david.murphy98 on Skype as well
I just wanted to be clear to everyone that I'm up for talking about things if you have questions. This message is most important not to my friends and those familiar to me but to anyone who stumbles upon this or is handed it, and is in a situation where they relate to this a bit closer to the heart and would perhaps like to ask some questions, or just vent some of their own story. Feel free to reach me.
Easiest is email: davemjmurphy@gmail.com, but I'm david.murphy98 on Skype as well
"I used to wake up and be instantly firing on all cylinders. It's a habit I had since a child..." - Jamie and I may need to confer on this point... haha. I am thoroughly enjoying this open journal blog format you've got going. You and Dougie Adams are my two favourite reads currently. The "pot-honesty" is really amusing too. "...and the mild throat irritation from smoking so much weed..." - I chuckled pretty hard here in my office.
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