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

Saturday 28 December 2013

Clean and Lean(er)

Food. It's definitely making a difference. It's shockingly impressive how much physically better I feel at the end of this week. I have also taken up my dosage of eaten marijuana by 20% (5 capsules instead of 4) and maintained that for about a week now. I think that's a contributing factor as well, but it is more likely psychological and long term physical effects rather than the physical changes I've been experiencing. I've, as I mentioned briefly before, gone to a really "clean" diet and it's just feeling really freakin good. I'm impressed. It's all based on my subjective impression of the results but I'm doing my best to self-analyse honestly and actively.

I had previously stepped up to clean, but lately have gone up even more. I was heavier on fruit nuts and berries for my smoothies until the last couple days but I've just upped my vegetable intake a huge amount by discovering I absolutely love veggie shakes that feel amazingly good to drink. Rather than just trying to give a feel for it I'll give a basic account of what I'm trying to eat now. One other worthwhile note is I've started cutting lemon and adding it to all my water and holy crap I'm enjoying it, it's making me drink more water, and giving me tons of vitamin C. I'm changing too many factors to identify exactly what's doing what but that seems to be a beneficial choice. I drink water a TON through the day, and that's an essential part of feeling good. First thing in the morning (as soon as teeth are brushed and mouth is thoroughly cleaned/gargled), I get right into the water and don't stop until bedtime.

So food eaten today:

Breakfast:
Wake up, hot prune juice, very small cup.
Smoothie: baby tomatoes, spinach, broccoli, avocado oil(1 tbsp), hemp hearts, flax seed. I put in about 250ml of water and drank just under a liter. Probably 200g tomatoes, a lot of spinach, and definitely seed heavy as well. I try to keep a high balance of Omega 3 to Omega 6, and Hemp Hearts are 6 high, so I make sure to offset with a good deal of flaxseed which is much more Omega 3 high.
Supplements: fish oil 1g, vitamin D

Brunch:
Smoothie:
300g Raspberries, Spinach, flaxseed, coconut oil (2tbsp), plain skim greek yogurt, water.

Lunch:
6 pc Tuna Sushi Rolls
Supplement: 2g wild salmon fish oil

Dinner: 1/2 size breakfast smoothie, 2 raw eggs.

I do vary things more. Today was a bit of a low grocery day so it looks like I'm eating just the same stuff. The veggie smoothies are new, and they'll in the long term be more evenly rotated between fruit and nut smoothies for nutritional content. My body has just been telling me to eat lots of veggies so I've listened and it's felt really good. That's been a big focus through this whole thing, has been building up my ability to listen to my own body. I definitely don't structure my diet exclusively around feedback or external information, but instead have a set of internal feedback knowledge I use to filter through the external knowledge sources to help decipher which seem appropriate to try and adapt and which don't. Then, following that, I try to make sure to give different things a shot and hope to like them if they seem like they should be healthy. I don't expect to enjoy every meal I eat. I've actually been pleasantly surprised by how much I do enjoy..almost enough to feel weird. I really do like raw eggs..

Back to the main point though. Listening to the body. I think that's really essential in responding appropriately to medical challenges. Build the best understanding of yourself you can. Different things really do work better for different people. I definitely seem to enjoy a reasonably high fat diet, as long as they're easy digestible, usable fats. No hate on animal fats either, just good clean ones. I seem to respond a lot to where the animal comes from. I love wild fish, I love game meat still, but commercial farm meat I really feel like I notice the difference. Maybe knowing about it is just generating that feeling inside me, I really don't know. I'm definitely not going to claim I'm going to never eat any anymore, but I'm going to try to eat clean, varied meat and a lot more other high nutrition substances. I absolutely NEVER would have expected myself to even think about saying that, I used to have special dreams about the blood out of rare steaks.. So it goes!

I've had other areas of that as well. I need to research what's actually happening or my best reckoning of what's happening before I can explain it better, but between stretching, pressure point therapy/tension release, heat therapy, combinations of the above, and keeping the body in a very clean state have combined to make a shockingly large difference in this last week. I'm feeling better now than I was at the start of this cycle of chemo, and this is day 9, when I should be starting to be hit decently. One thing that's very interesting has been the value of really hot showers. I find at long periods I'll get a feeling of pressure at the base of my skull, and alongside that pressure just an extremely vague sense that something's not quite right in my head. If I shower, and keep temperature at an uncomfortably/borderline painfully hot temperature at that point, up and down the neck, and around the head, I'll generate what I think is a release of tension that presents me with a mild neurological stimulative sensation a bit like tingles right into the tips of my fingers and toes, and then when I'm getting hot I press with best pressure I can manage into where I feel the most tension at the base of the skull, and press in pulses. The reason I bother to go through the detail of explaining a slightly less sexual version of playing with myself in the shower is the level of difference it makes. It's hard to fully quantify or explain but it's astonishing. I'll go from feeling not quite right to feeling total clarity and 100%, a huge release of tension, easier to maintain better posture, it's just wicked. Another note is I do actually use that technique, and found that technique in fact, treating injuries and scar tissue deposits in joints/muscles, for tension release. I'd use it on my back/shoulders as best I could, but not so intense. In the morning, drinking a smoothie, a ton of water, then showering and doing that leaves me feeling just great. I still have been holding myself back some on activity level as I wait to move into my new house when it gets set up, and I can get to work on upcoming life projects and stuff. I definitely overtapped for a bit and this high rest period has held some value. I can tell by my sleep periods shortening it's coming to an end though and it's time to start tiring myself out a reasonable amount again.

That will make for more interesting posts. A puppy, some projects, and a picture of what's coming up in life.

Friday 27 December 2013

The Morning After

So I wrote for the first time in a while last night. It turned out to be a long post. I think it was good for me. It turns out I may be using this blog as some modern e-daptation of a confession booth almost. It's my way of clearing up and pushing out the turmoil of my mind, trying to structure it at least a little, and see what it looks like when I actually push it out into reality. I share what I write pretty openly and don't edit it very much, I think it's better to try and share this experience as what it was like for me in the moment and from my eyes, rather than a glossed and controlled presentation.

I woke up this morning feeling better than I have in ages. Pretty odd considering it's mid-cycle. Last night was day 8 cycle 8. I actually think it may be my dietary revisions boosting my body's maintenance systems to the point where they can keep things in a more adequate balance against the wonderful life saving toxins. It may turn out to be just a one day off thing, but I actually feel like I'm full of beans today, lots of energy, and a lot of the negative stuff that has been caught in my mind feels a lot more free and able to be let go of. That's a part of why it's tricky to determine cause of this effect too however.

I've spent a lot of time lately working very hard at confronting myself about some negative issues caught deeply inside me. I've been trying to seek out the real base of some anger and other feelings that have been hard for me to deal with. My anger is really my worst one. I have a temper that greatly discomforts me. It was a huge challenge and problem for me growing up and one I told myself I'd dealt with, but rather than having actually confronted I just buried deep inside myself. The stress of this time has brought it back up closer to the surface, and times I've had it brought about in me have been terrifying. When I feel the chemicals release I get this feeling of a doubt of self-control. The feeling of fear I get as I begin to feel that is almost like the feelings I'd get with precursor sensations of a seizure. My whole life I've told myself this temper is just some natural bred in thing. I'm a barbarian or a warrior or whatever. I begin to doubt it lately though. More and more as I push in at it my anger and frustration seems to be at the center of everything, with a much more complicated set of reasons behind it. I don't really feel like I understand it well enough to try and explain it now. I'm going to keep working on it though. I'll actually be going to a shrink early in January to get some more discourse going and try to bring in a nice objective, wise, perspective. I probably won't talk about that much on here though.

I feel like my reckoning against that temper and part of myself, the negative thoughts, could hopefully be a parallel to my chemo experience. Scary to first encounter, hard to begin the battle, and not an easy one to fight, but one with a lot of lessons and a lot of gains to seek if it can be confronted. I  don't thin I'll ever totally take that part of myself out, but I need to at least rebuild my control over it, and in a more honest and direct fashion.

Stepping back to just the real life basics though. Up early, feeling good. Drank my prune juice, let Winston out, writing on the blog. Plan for today is pretty basic. Pick up the POT woodchipper for the tractor, spend some time with my family. It was potentially going to be delivery day for the "minihome" (my mcmansion I call it) today, but we had some bad weather last night so it's going to be cancelled. Not too big of a deal though, it should still be able to be in before long. It'll be nice to get to move into my own place. I've been off my land and staying at my mom's cottage a while now and it's interesting how different it feels. I got out on my land for a few hours yesterday, working and playing with my Dad, and that left me feeling really good. I find myself thinking of future potential and hope and all kinds of good things. I don't seem to relate well to staying in family houses. I definitely won't whine about it, it's an incredibly beautiful place and is treating me well, but I definitely excitedly anticipate getting to move back into my own little world.

Well, time for breakfast. Off to the blender!

Thursday 26 December 2013

Winter Visit

So as I feared I've dropped off here a great deal since getting the positive news. I may have said before but I find it more of a challenge to speak about the upsides and happy parts of my story. It's not to most people I'm writing to and sharing this with, it's a particular and small sup-group that may not even exist but I hope one day may: fellow brain cancer battlers. I have been given great generosity and kindness, and support from my family and the people around me that sometimes I feel like isn't even fair. I'm being set up with a place to live that is of my dreams, and the potential to chase goals and adventures that go beyond where I even imagined. It's not some mansion or a trip around the world, it's a"minihome" on a decent sizes rural lot, a tractor for working on it, a quad for adventures, and the hope/dream of a boat to get back out to that ocean and return to shark fishing on. Yeah okay that's a lot. I've tried my best to be appreciative, to show my thanks, and just to be a good son to my parents for being so kind to me. I definitely haven't been perfect, but times haven't been quite as perfect as my brief account sounds either. Still amazing though.

But back to the point. What has been my huge underlying concern is that that's just not fair and not realistic, and it's going to make other people who could have to walk down this road feel like they can't relate to me and it loses its meaning. I guess I'm also scared of being judged as some spoiled rich kid. At the same time, the last thing I want to do is even be slightly dishonest. It's put me at a feeling of conflict and hesitation that I've allowed to just drive me away from here. What I need to do is just be honest, be careful in how I express myself, but not hold back the truth for fear of judgement. I've done things and been through things that have earned my own respect, and that was harder than earning the respect of others around me. It's time for me to carry myself forward with that.

So I've been transforming viciously mentally through this time period as well. I've been dealing with a huge change in my state of mind and approach to life. I've been coming to terms with some very serious part of myself I hadn't faced up against in years. The feeling of emotional release that began as I started to let myself believe in a chance to live further into life than I'd thought of for years continued and continued. I've laughed and cried more in the past few weeks than I did in years before. I've began to actually think of a future with real potential to do things, to grow, to experience life. It's pretty enjoyable. One thing I've been careful to remind myself of all along though is a slight hint of progress in chemo is a LONG way from defeating cancer. Even if chemo continues to be very successful, even if it goes beyond the hopes and dreams of predictions, there is nothing to say the little tiny hints that are left can't mutate and come back for me. I don't mean to say that in a depressing fashion. I actually am smiling a great deal. It's just that I need to be careful to remember that to hold myself properly in the balance between confidence and arrogance. I have intent and goals to be proactive in response to that added risk and keep myself from having to deal with that, or as I've said before, to fight it as well as I can. I just need to keep honest with how I approach it.

 I'm just pushing deeper and deeper with diet as it continues, and I've gained more clear resolution in how I'm going to pursue that moving forward. I've really continued down the same avenue as before and just gotten even a bit more serious with it. I'm shockingly close to a vegetarian now, even more than before, eating meat maybe a few times a week now. I'm eating seeds, nuts, yogurt, coconut, and veggies for pretty much all my meals. Smoothies all the time. Salad and unpasteurized cheeses.  I've gotten to the point where I'm not focusing on the taste of the food anymore, just the nutritional content, and that it tastes good enough I can get it in without irritating my stomach. I don't intend to hold it to that level long term. It's damn impressive how good it feels though. I've also continued to pursue the paleolithic/ketogenic/high fat low grain aspect. I've gotten further with it and it feels like my body has adapted to it now. I was getting fat cravings for a while but I just feel normal now. I do still definitely eat a high fat diet. My step-grandmother gave me chicken soup for dinner tonight, and I cooked it then added in a... shockingly large amount of butter, and then some coconut oil. God damn that was good soup. And I'm still losing weight and have no serious variance on blood tests! I think where I've come to now with my eating routine is significantly better than I've had it before and I hope to keep improving it. That's the key, I think it's great, but holy crap is there ever a ton of room for improvement!

My eating is pretty standardized. If you read before, the smoothie mixes from before are similar, but I'm adding Kale and more baby spinach more often, and going a lot heavier on seed content. My eating routine is very regular. I wake up, immediately rinse mouth with water, brush teeth, then have to drink hot prune juice (because of the surgical anti-nauseants, to keep the..system...working). I then drink about 2L of water with a bit of lemon in it, and start making my smoothie. I usually make a bit more than a L of smoothie, pretty dense. Probably getting most of my day's calories in that first smoothie. Later in the day I'll tend to go for salad decked with goat cheese (easy to digest) with nuts and fruit and stuff. Other munchies are raw fruit, raw veggies, hummus, rice crackers. Other major diet point would be raw eggs. Those feel damn good to eat and I actually even enjoy them now (yeah I know, bit messed up). I do have an occasional meal with meat in it. My last one(prior to soup) was a bastardized poutine of some strange form. It was a leg of duck, a bag of cheese curds( fresh from quebec) a can of beef gravy, and some coconut oil. My body seems to want lots of clean fats, lots of fruit and veggies, especially dark green veggies, and lots of nuts and seeds. I need to keep stocked on protein, and keep sugar up a decent basic bit. I also have to drink a TON of water. Minimum 6-8L a day now. I will wake up feeling pretty crappy, but if I go through this eating regimen and stick to everything I can have a good decently active day where I feel really good. Also as long as I eat a bunch of hash oil and smoke a decent bit too, can't forget that part. Going back to the food though, I've also formed a set of long term goals around that. Beginning next summer I'm going to get to work around my property at setting up a set of greenhouses and gardens to grow as much as I can of my own fruit and vegetables, and hunt, fish, and raise as much as I can of my own meat/eggs. I'll just start with basics, but there will be lots of room to keep building and it should be a great life project.

As for the treatment I've been reading more and more and the more I read the more I realize how little I know and how long it will take to actually learn everything I want to learn. There's no way I'll be able to learn everything I'd like to about managing treatment/cancer in time for the duration. I find that uplifting though. The fact there's room for improvement just means if things aren't going well I can keep stepping up to the plate more If there is still an ounce of power in my hands to resist this I will use it. And it seems like the more I read, the more I open my eyes, the more power I find thanks to the help of other people. The fact I can potentially use this treatment again, it's working this time, and I have the power to improve my management of the treatment for the next time, allows me to feel honest and balanced in opening myself to optimism about an actual meaningful, significant future. It felt like a certainty of death I had to embrace as a responsibility to be honest with myself before, but now it's just an added risk. I've discovered allowing that to settle in has also opened me up to myself way more. Old memories, old emotions, new emotions, all kinds of confusing, stressful, awesome, ridiculous, beautiful, bullshit. And the ability to reach into and touch parts of myself I forgot existed. I feel like my inner child is coming back to life maybe. It's kind of awesome but kind of has its downsides because I'm sort of not totally in control of some of that part of myself. I think that's partly just because I've been really stressed with all this too, but I definitely need to spend some time and care reckoning with these changes and what they mean.

One part that's kind of exciting is I feel like I'd really closed myself off to the idea of love and truly opening myself to such an experience, I felt like I'd be this destructive weight. I always pictured myself starting into a relationship with a girl, her finding out I have cancer, feeling obliged to be kind and deal with it, and then things just spiraling downhill. I saw how hard watching me go through surgery was on my whole family and on my girlfriend at the time (who I spoke to for the first time in a while recently, it was nice), and I pictured the torment of having a young person I loved who knew they were going to die, who couldn't/wouldn't even consider serious long term commitments because of a feeling of inability to make that promise, and then the experience of having to love them and watch them die, and I didn't want to do that to someone else. I thought it would be better for me to just enjoy the rest of my life as much as I can without worrying about that, enjoy friendship and masturbation and work and carry on. Even though it's still a lot more likely for me to die young than someone else, for some reason this hint of victory is all it takes for me to feel freed from that certainty and actually open myself to that. The fact I have a plan of attack for response, a life goal to do all that I can to resist it, is enough to let me at least try. I'm not exactly about to get out on the prowl, being on chemo means I'm not exactly maximally on top of my game (... game? could be an issue anyway) and I think going through this will leave me with some stuff in my head I need to deal with and come to terms with before I try to take on something else, but shit just the idea it's possible is pretty enjoyable.

That is just one reflection of this new feeling of embracing a more positive outlook on life. Alongside that feeling comes a great challenge I've been dealing with lately and one I definitely don't feel like I've found a resolution for: the balance between confidence and arrogance. I know, and have seen demonstrated over and over, the value of confidence. Believing in yourself seems to empower you on some almost magical level, if my drunk memories of high school dances are correct( ... ). At the same time though, tooting your own horn is not something I want to do and I think carries great weakness in itself. It's a huge need in life to always recognize your own weakness, vulnerabilities, need for improvement. It has been recognizing those that has let me find hope. When I took the cancer on as my own responsibility, a consequence of my own mistreatment of my body, it became easier to believe in my ability to empower the treatment and further enable its success. That change of mindset has enabled me to further improve my diet and lifestyle habit leaps and bounds. It requires knowing I've been a huge dumbass a ton of times before to see that it's actually really easy to do better and maybe that might help fix things! It's been introspective self-criticism that has revealed to me most of my best empowering moments and built my confidence the most. That demonstrates clearly the weakness of confidence. Too confident and you end up blind to those weaknesses, unable to accept criticism, and then from that you fall into stasis and end up becoming weak. To stay safe you need to always remember that no matter how good you are, you still actually are a total goof because everybody is, life is just that freakin complicated. That's been my answer anyway.

 As I get all these experiences which are empowering, which people tell me I deserve to feel great about, to be confident for, I don't want to go blind to my weaknesses and challenges and then end up not fighting as hard as I could, and losing when I could have tried harder. At the same time though, I need the confidence to keep trying, to believe in myself. I think it's about the tension between potential and actualization. I can believe in myself and a strength I find deep in myself but can't bring out. That strength seems when I look in to be great power, to be able to potentially carry me to great things, a burning fire ready to light a clear path forward. The trick is, it's really tricky to get it out and use it properly. If I try to bring it out raw I just burn myself and other people and that's no good. If When I bring it out in a presentable fashion, it turns out it's not so bright, the case I can build around it isn't exactly perfect, and maybe it's not getting all the air it should, and really perhaps it's moreso just a candle. Like everyone else's. I think it's pretty hard to let yourself out into the world, to tap into that strength. The big trick and one of the problems of confidence has been if I listen to the compliments and see what I see when I look in, I feel like I'm going to have to be cocky, because it looks better than other people's. The trick it took me 25 years to realize though is that's all perspective. It's what I see when I look in, combined with my highlight points. Big whoop that can look good, I'm sure everyone's can. It's like the gas for your candle, it doesn't matter how much gas you've got, it's how you burn it that counts. I hopefully will make it through this storm and burn a lot brighter afterwards.