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

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

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

Tuesday 25 February 2014

A Clearer View

So that last post was fun to write but I'm not sure what reading it will be like. I think the disjointed nature of the text and jumpy line of thought shows how my brain has been dealing with all the issues lately. It's running high speed in some ways and slow in others, trying to deal with a deeply varied plethora of things and just come to a solid, sturdy point where I can start building a good life from again. Tonight was a big step forward for that, I felt like myself more going into joining the firehall. I was nervous, I had fun, I learned a bunch, and generally had a great time. It will be a good group of friends moving forward, a good stable routine to keep my feet on the ground, and in the future some very serious experiences I hope to learn a lot from. We are a notably remote fire hall, dealing with a large area and farther from a hospital than almost any other in our area. This means we will have more responsibility and direct action than a lot of fire halls. That's a solid responsibility but also an exciting one, because it means there is even more to learn.

It's interesting thinking about sharing myself and my situation and all that with the people of the fire hall. The chief knows, and so do some of the other members, but not everyone. I didn't do the social hour tonight, I was worried about getting home to keep an eye on Cora, or that was what I thought at the time, but I think I might also have been just a bit socially nervous. I'm still adjusting to never smoking and readjusting somehow to not drinking. Part of me feels like if I give up weed I should take back alcohol, or that I can trust myself in moderation. I don't really think that's right though. I've written down a set of strict rules I may try to follow some day, because I do indeed enjoy the taste of good beer with a good meal on occasion, but I don't think social drinks are really the right answer for me anymore. They just carry too much weight and temptation for me with my history and situation. It's weird to be clean living when I was such a binge partier then such a stoner in my past, it's a big adjustment, and one I'm somewhat still struggling with, but I think in the end I'm going to gain a lot from it. I need to find new passions and purpose to engage with and that will be satisfying. I hope to find ones that don't even just help me too, at least not all.

I'm so lucky being given the ability to deal with this situation slowly and carefully as I have, and in the state of luxury and care that has been provided for me by my family, and even on top of that my friends and the community around me. It's incredible thinking of the amount of help I've had in the past few years, the past 9 months or so in particular. I try to think of myself as not spoiled, and that the challenges and hardships I've faced in this time balance out with what I've been given, but I do hear an echo from my time in the hospital, seeing people dealing with at least a part of what I am without anywhere near the kind of support I've been getting. Many got great love and care from their family, one of my fellow patients had his mother in with him every day, but to have the financial support, and welcoming home community on top of the love I've received as I have is something special. I am sitting now in a beautifully comfortable home, writing on a nice computer, a fridge full of high quality food, and two happy dogs relaxing on the floor. I'm comfortably dressed, I have plenty of entertainment if I need it, and if I had a problem with anything I could call for help and not worry about whether or not I would get it. It's easy to understand why I can stay so positive minded when I just look around me.

That still doesn't clear the fear though. My big stress for the moment is overcoming my "disability". I feel a deep driving need to return to my freedom and I have a deep fear regarding that. In my self-confrontation that led to my time in the hospital I actually experimented with reducing my dose of Keppra. As a result I had a series of seizures observed under medical care. They were still the minor kind where I retain some physical control but most primarily lose control of speech. One of the most interesting parts was I found that some of my responses to my prior seizures had been neuroses rather than direct effects. I obsessively did the motions and actions which I'd needed to do to prove my consciousness during the surgery as soon as I felt the triggering symptoms of a seizure, which made me seem to be at a deeper level of lost consciousness than I was. I was able to establish and prove that at least to a degree in the hospital, and I hope that action will help me moving forward. Since that time I've been stable completely, and the episode of them ended very quickly. The terror I hold though is that mistake could be a postponing of my return to full freedom of movement. I've got an appointment in mid march and I will get more information then. I do feel confident, or want to feel confident, but I'm also very unsure. I know I'm on more medication now and probably more stable, but it's earning the trust of the medical system that is essential for me, and I can't help but wonder if I lost some of it by making those independent choices. It's a tough balance of trust too. I want them to trust me, they want me to trust them, and both of us have hurt each other some in the past. My time in the inpatient care at Abbey Lane, the feeling of overmedication was terrifying to the point I felt a loss of trust in the  medical support I was getting. I couldn't, can't, completely understand why my one doctor kept upping the dose after I showed the stability I did, or why she upped it right before sending me home for a weekend blindly. I'd opened myself to full blind trust of the medical authority prior to that to prove a point to the system and re-earn its trust, and then in my first experience following that I felt hurt by it. Even following, my inpatient care was hard to fully trust. The doctors were helpful but a challenge to deal with, and while my first appointment was great and thorough, towards the end I got a greater feeling of following paperwork than interpersonal care. There are huge challenges on the system though and I don't mean to talk smack about it or say it's absolutely bad. It just has points where I don't agree with method and such completely. I think that's largely because it is underfunded and undersupported, while the administrative services that sit in offices and plan it are excessive. I'd like to see more better paid nurses, more doctors, and less people who have meetings to talk about how things should go. The professional caregivers and physicians can discern for themselves how to do their jobs and they showed me that alot, especially the nurses. The best ones were the ones who did what was right by their knowledge and wisdom, not by the pure fine lines of the papers they were given to follow. I received above and beyond care and even advocacy from a few in particular, and if they ever choose to read this I'm confident they'll know who they are. One in particular, Debbie, is a bit of an angel in my heart now, and if she ever chooses to read this, (I hope she does) I need to remind her it's 4675 hwy 329 and you and your scooter are welcome any time for a visit, but there's no pressure to do so.

Returning to work is a source of anxiety too I suppose. I may have financial support, but it doesn't stop me from wanting to earn and produce for myself and return to a greater position of freedom and stability. I have a few ideas of what I'll do, hoping to produce as much as I can off my own land, likely spending some time on the ocean, bidding on and carrying out small forestry contracts, and then some private residential services with chainsaw and equipment. I need to further develop my skills and abilities a great deal to be ready for proper independence though, so it's pretty much time for me to return to work on my own lot. It's a challenge for me to find the energy and drive to do that now though. I don't know if it's the drugs, recovering from the stress, tiredness, or what it is, but I'm just drained and seemingly unable to get up and going. I hope I feel better tomorrow, I need to get out and run the saw and tractor for a while, I really do. I also desperately need a gym run I'd say. Lifting some heavy stuff is good for the body, mind, and soul if you're built like me. Meditation is another quest I need to return my focus to. I let myself feel so overloaded as to justify not really engaging in it for a while, and I need to rediscover it. Writing on here is helpful for everything too. It pours my mind out and lets it slow down within itself, focus on more important things. It also keeps me honest to myself. I'm more deeply unwilling to lie to the outside world than I am when I think to myself, so writing on here helps me clarify my thoughts and make sure I'm not letting any little bits sneak in on me and pull me in the wrong direction. It's funny that's the case I suppose, I feel as though the stereotype is the opposite, that people hide with their honest introspective views at home and create false exaggerated projections to share with the world, but this is just my way of doing things. I hate the idea of lying about myself to people I care about and trust, and I like to think of those who choose to read this as those kind of people. I can't say with certainty I never do by mistake, I don't really audit myself or even look back and edit, as I know I've said before this is just what flows out no real serious changes or retrospection, but I do my best to keep it on the straight and narrow.

That said, it's getting hilariously close to my bedtime. Especially considering I had a 5 hour nap today.

I suppose I must be still recovering somewhat.

Goodnight

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