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.
Saturday 28 December 2013
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!
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.
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.
Thursday 28 November 2013
Different Light
Well, snap, it's been a while. It's been a very interesting experience lately. I've found since I got the good news of that Oncologist meeting I've felt like I have less to say/less to share but my brain has been racing. I've opened up huge parts of myself I'd sealed off to protect myself from the pain of losing them. I've been unleashing a torrent of happiness and hope and dreams upon myself and in the act of doing so opening myself back up to risk of pain, sorrow, heartbreak, and loss. Damn does it ever feel good. I didn't realize just how much I'd accepted my mortality prior to that piece of positive news. I do know, and always remind myself, than 10% of a tumour gone is a LONG way from cancer cured, but progress in the right direction has been a mind blowing experience.
Something funny I've realized lately is I've wanted to blog less because I feel like I'd be bragging. I mean I'm still on chemo but with all the other stuff going on in my life, reconnections with friends and family, new people, great experiences, opening up a future with incredible potential, and the generosity I continue to take in are amazing. I feel incredibly lucky these days and am just happy as a pig in shit non stop.
One thing that's brought about as a central focus though is to not let my guard down. A hint of progress in the right direction doesn't mean the war is won, it just means there is potential to do some damage and hold down the fort longer. I really need to make sure to not get cocky and forget how much help and work it took to get this. It's time to use this as a foundation to move into a healthier, more open life not as a brief look at the light and then stumbling back into darkness.
So on that note, I'll get into talking about the way I've been eating and how I've been figuring that out more. When I consider how ridiculously different it is from the way I was eating before this all started I realize it has to be doing something for me in this. I've switched almost to a vegetarian diet with meat as a (delicious) supplementary nutrition part. In saying that I don't mean I don't eat meat, just that for other than meat I realized I've copied a bunch of veg muncher tricks to add to nutritional density. Salad with nuts and fruit and goat cheese, hummus til my head explodes, seeds, nuts and oils up the yin yang. One of my clutch meals the nutritionist seemed impressed with was my POWERNUT SMOOTHIE OF POWER
How I'd recommend making it depends a bit on the blender. With a normal blender it's still very doable, just a tiny bit more expensive. The recipe though is pretty basic.
1. Raw nuts: a bunch. This is the part to switch for other blenders. All peanut peanut butter was my original, then I started mixing in almond butter. Best way to get these at a reasonable price I've found is Costco. In the grocery store it's crazy expensive. If you get a heavy duty blender though raw nuts can be fully blended into the smoothie and you can up the nutrition of it by getting a larger variety (mmm cashews).
2. Almond milk: a bit. Or switch it up with some nice whole milk.
3. Hemp seeds: 1tsp-1tbsp
4. Flax seeds: 1tsp-1tbsp
5. Hemp Oil: 1 squirt (not the type that gets you high)
7. Coconut Oil 1tbsp
8. 1 Banana
9. 1 scoop chocolate whey (or your choice of chocolate protein)
Blend it up, and enjoy. Some tricks that can help are adding ice to help it be colder, and the ice will melt while it blends so also make it more liquid. If you don't mind it being warm, just add more of your milk of choice until it seems the right thickness for you.
The other smoothie of power I rely on a lot is a berry based alternative that's pretty similar. Take out the nuts and chocolate protein, replace them with berries and some nice full fat greek yogurt (plain), and a bit of vanilla whey (not a full scoop usually, too sweet). I switch up details on them a lot, with the type of nuts in, the amounts of the supplementary nutrition parts, and even including some. I don't try to eat the same thing every day or even every week. I've noticed my body seems to want different things at different times and I try to look after it. I mean yesterday I ate probably an acre of field worth of salad and goat cheese. Lately as well I've noticed I want fat more and more as my diet changes. I have had moments where I've felt like biting a stick of butter ( I haven't, I promise). I definitely have been keeping on the 1g/day of fish oil and might even take it up some. My only concern with how much meat has come down in my diet lately is getting enough protein, but my response to that has been on my week off from chemo I load up pretty big on it while my stomach is less sensitive. It's going to be interesting to see where my diet levels off to after chemo is done.
There is really a lot more for me to talk about. I think now that I wrote again here, I can tap into this kind of stuff more. I'll try to build the picture more of how I've been dealing with chemo, and also the story of how I ended up here. For right now though, time to get back out there and get in touch with the second part of this blog's name.
Much love
Something funny I've realized lately is I've wanted to blog less because I feel like I'd be bragging. I mean I'm still on chemo but with all the other stuff going on in my life, reconnections with friends and family, new people, great experiences, opening up a future with incredible potential, and the generosity I continue to take in are amazing. I feel incredibly lucky these days and am just happy as a pig in shit non stop.
One thing that's brought about as a central focus though is to not let my guard down. A hint of progress in the right direction doesn't mean the war is won, it just means there is potential to do some damage and hold down the fort longer. I really need to make sure to not get cocky and forget how much help and work it took to get this. It's time to use this as a foundation to move into a healthier, more open life not as a brief look at the light and then stumbling back into darkness.
So on that note, I'll get into talking about the way I've been eating and how I've been figuring that out more. When I consider how ridiculously different it is from the way I was eating before this all started I realize it has to be doing something for me in this. I've switched almost to a vegetarian diet with meat as a (delicious) supplementary nutrition part. In saying that I don't mean I don't eat meat, just that for other than meat I realized I've copied a bunch of veg muncher tricks to add to nutritional density. Salad with nuts and fruit and goat cheese, hummus til my head explodes, seeds, nuts and oils up the yin yang. One of my clutch meals the nutritionist seemed impressed with was my POWERNUT SMOOTHIE OF POWER
How I'd recommend making it depends a bit on the blender. With a normal blender it's still very doable, just a tiny bit more expensive. The recipe though is pretty basic.
1. Raw nuts: a bunch. This is the part to switch for other blenders. All peanut peanut butter was my original, then I started mixing in almond butter. Best way to get these at a reasonable price I've found is Costco. In the grocery store it's crazy expensive. If you get a heavy duty blender though raw nuts can be fully blended into the smoothie and you can up the nutrition of it by getting a larger variety (mmm cashews).
2. Almond milk: a bit. Or switch it up with some nice whole milk.
3. Hemp seeds: 1tsp-1tbsp
4. Flax seeds: 1tsp-1tbsp
5. Hemp Oil: 1 squirt (not the type that gets you high)
7. Coconut Oil 1tbsp
8. 1 Banana
9. 1 scoop chocolate whey (or your choice of chocolate protein)
Blend it up, and enjoy. Some tricks that can help are adding ice to help it be colder, and the ice will melt while it blends so also make it more liquid. If you don't mind it being warm, just add more of your milk of choice until it seems the right thickness for you.
The other smoothie of power I rely on a lot is a berry based alternative that's pretty similar. Take out the nuts and chocolate protein, replace them with berries and some nice full fat greek yogurt (plain), and a bit of vanilla whey (not a full scoop usually, too sweet). I switch up details on them a lot, with the type of nuts in, the amounts of the supplementary nutrition parts, and even including some. I don't try to eat the same thing every day or even every week. I've noticed my body seems to want different things at different times and I try to look after it. I mean yesterday I ate probably an acre of field worth of salad and goat cheese. Lately as well I've noticed I want fat more and more as my diet changes. I have had moments where I've felt like biting a stick of butter ( I haven't, I promise). I definitely have been keeping on the 1g/day of fish oil and might even take it up some. My only concern with how much meat has come down in my diet lately is getting enough protein, but my response to that has been on my week off from chemo I load up pretty big on it while my stomach is less sensitive. It's going to be interesting to see where my diet levels off to after chemo is done.
There is really a lot more for me to talk about. I think now that I wrote again here, I can tap into this kind of stuff more. I'll try to build the picture more of how I've been dealing with chemo, and also the story of how I ended up here. For right now though, time to get back out there and get in touch with the second part of this blog's name.
Much love
Thursday 21 November 2013
Well Hello Again
Hey now,
It's been a while I know. I think the reason why might have been hinted at in my last couple posts. I pulled inwards a bit while I waited for the MRI. It was a combination of stress and anxiety, a desire to not jinx it, and wanting to be careful about what I say. That's over now though, the medical check's been done. I know a lot of people who read this know me personally and will have seen or heard the news: it's working.
That isn't saying some super-guarantee like cancer is cured now you're officially safe forever. There's still a good bit of tumour in there. However, it does mean a whole fuckin lot. For the basic science, it's shrunk around 10% in the second 3 months of treatment(>3mm on 2 directions, depth change I'm uncertain of), without shrinking at all in the first 3. There are 6 months left. That's pretty damn significant with Temodal. I want to be careful about getting overconfident, but it has a lot of good implications. The effect of this type of chemo often takes a long time to show. They can have successful cycles of chemo where at the end of therapy it doesn't look like the tumor has changed at all, then slowly even after, it shrinks. That's because the chemo works moreso by stopping it from growing and killing its attempts to growth than righteously destroying it. The speed at which it's making progress, and the swift acceleration its showing, both give me great hope and optimism, and further determination to stick to all the support and maintenance I'm bringing in. The other part I found out, is if this works, and keeps it shrunk long enough that my body can recover from its experience, rather than having only radiation therapy as a next step/backup, I can potentially use Temodal again. Knowing radiation therapy was going to destroy my speech center and at least for a couple years render me unable to talk was a terrifying concept, and one that felt just around the corner with my prior conception of this chemotherapy. The fact that's being considered had some pretty heavy implications about what kinds of times they're thinking of in their own plan of attack from the medical side, and they felt pretty damn good.
As for my side, I do think that the medical marijuana is playing a big role in this, and I'm going to try to build my understanding of that better so when I try to talk about it I can be careful to not accidentally outright lie to people or falsely mislead them. I know some people will view marijuana as a cure on its own and in doing so often discredit it, and others view it as purely recreational, or purely therapeutic. My interpretation so far is it is more of an enabler than a direct cause of effect. It can help someone who feels like being lazy get more lazy. But it seems to me like it can help a determined S.O.B. make it through chemo in a pretty fun fashion. Shark fishing, zensaw time, quad runs, scallop diving, surveying and planning my new property... I haven't been too lazy, I promise. My hypothesis thus far is that rather than carrying out the act of destroying the tumour on its own, it moreso enables other agents to do so, whether that be the foreign body of chemo brought into the system, or your body's natural systems of resistance.
The other hypothesis that I've been developing that has seen some reinforcement with these results, is the big picture of physical and mental status can have great sway and influence on seemingly not directly related things. I've put a huge amount of focus and energy into both confronting some of my hidden childhood psych issues and repressed bullshit, as well as trying to deal with cleaning up after a bunch of old injuries, and re-working my posture and spinal alignment. I'll never try to quantify or objectively measure the contribution of all of those parts, but I do think components that would not be directly espoused within the regulated medical system stand a chance of playing a real role. That isn't to complain or speak badly about my doctors though. They are definitely doing a great job, and I've been very lucky to get such kind, compassionate, and intelligent people to help and support me through all this.
I'm still a bit in shock over the news, trying to figure out how happy I can let myself be with it, how optimistic I can go, and I'll be able to express myself a lot more clearly and have a lot more to say as this all clears up in my head. I just felt like it was time to get back on here and say something.
It's been a while I know. I think the reason why might have been hinted at in my last couple posts. I pulled inwards a bit while I waited for the MRI. It was a combination of stress and anxiety, a desire to not jinx it, and wanting to be careful about what I say. That's over now though, the medical check's been done. I know a lot of people who read this know me personally and will have seen or heard the news: it's working.
That isn't saying some super-guarantee like cancer is cured now you're officially safe forever. There's still a good bit of tumour in there. However, it does mean a whole fuckin lot. For the basic science, it's shrunk around 10% in the second 3 months of treatment(>3mm on 2 directions, depth change I'm uncertain of), without shrinking at all in the first 3. There are 6 months left. That's pretty damn significant with Temodal. I want to be careful about getting overconfident, but it has a lot of good implications. The effect of this type of chemo often takes a long time to show. They can have successful cycles of chemo where at the end of therapy it doesn't look like the tumor has changed at all, then slowly even after, it shrinks. That's because the chemo works moreso by stopping it from growing and killing its attempts to growth than righteously destroying it. The speed at which it's making progress, and the swift acceleration its showing, both give me great hope and optimism, and further determination to stick to all the support and maintenance I'm bringing in. The other part I found out, is if this works, and keeps it shrunk long enough that my body can recover from its experience, rather than having only radiation therapy as a next step/backup, I can potentially use Temodal again. Knowing radiation therapy was going to destroy my speech center and at least for a couple years render me unable to talk was a terrifying concept, and one that felt just around the corner with my prior conception of this chemotherapy. The fact that's being considered had some pretty heavy implications about what kinds of times they're thinking of in their own plan of attack from the medical side, and they felt pretty damn good.
As for my side, I do think that the medical marijuana is playing a big role in this, and I'm going to try to build my understanding of that better so when I try to talk about it I can be careful to not accidentally outright lie to people or falsely mislead them. I know some people will view marijuana as a cure on its own and in doing so often discredit it, and others view it as purely recreational, or purely therapeutic. My interpretation so far is it is more of an enabler than a direct cause of effect. It can help someone who feels like being lazy get more lazy. But it seems to me like it can help a determined S.O.B. make it through chemo in a pretty fun fashion. Shark fishing, zensaw time, quad runs, scallop diving, surveying and planning my new property... I haven't been too lazy, I promise. My hypothesis thus far is that rather than carrying out the act of destroying the tumour on its own, it moreso enables other agents to do so, whether that be the foreign body of chemo brought into the system, or your body's natural systems of resistance.
The other hypothesis that I've been developing that has seen some reinforcement with these results, is the big picture of physical and mental status can have great sway and influence on seemingly not directly related things. I've put a huge amount of focus and energy into both confronting some of my hidden childhood psych issues and repressed bullshit, as well as trying to deal with cleaning up after a bunch of old injuries, and re-working my posture and spinal alignment. I'll never try to quantify or objectively measure the contribution of all of those parts, but I do think components that would not be directly espoused within the regulated medical system stand a chance of playing a real role. That isn't to complain or speak badly about my doctors though. They are definitely doing a great job, and I've been very lucky to get such kind, compassionate, and intelligent people to help and support me through all this.
I'm still a bit in shock over the news, trying to figure out how happy I can let myself be with it, how optimistic I can go, and I'll be able to express myself a lot more clearly and have a lot more to say as this all clears up in my head. I just felt like it was time to get back on here and say something.
Saturday 9 November 2013
On The Table
Hey,
I've dropped off the web for a while. It's been busy times! I've found since opening myself up to what's going on inside more I've reconnected with an active purposeful life more and more every day. I'm scheming and dreaming all the time now about how I'm going to start myself a new successful life by taking the skills I've developed, the passions I have, and the incredible luck I have in that my parents are willing and able to help me make a start here. Dogs, trees, and the ocean. We'll see where that goes.
For now though, and for here, I want to get back to the more serious side of the story and one part that's been on my mind a lot lately: the operation. I've actually had some serious moments of clarity in retrospect of it lately, and am coming more towards grasping the significance it held for me and the lessons I learned in that experience. Most of my memory of it is blacked out or blurry, and some parts of what I will recount may be my best guess and interpretation of the haze rather than the clear objective truth, but I'm going to try to share what that was for me.
The first part of the challenge was the waiting game. Once I knew it was coming I began to steel myself towards it. I withdrew inwards, seeking to insure myself and those around me against the chances I was warned of. 2% paralysis, 2% loss of speech, >1% death. While those aren't big numbers, for consequences so heavy they felt pretty severe. I was in a relationship then, one I'd handled like a doofus in many ways from the very beginning, and that was exponentially increased by the stress, the anxiety, and I think deep inside me a desire to push people away from me for fear of hurting them, by failing to survive the surgery or make it through as my full self. In those months there was no greater fear than of coming out disabled and having to watch helpless while I destroyed the people around me. This fear and seeking self-protection though created far more harm than good. I wasn't actually unfaithful, but I might as well have been, and I just pulled inwards, played video games, got fat, and stopped getting laid eventually. Inside though I was steeling myself for battle. I knew there was a moment coming more decisive than any of that, and I wanted to be as ready for it as possible. I sought to confront the fears as best I could in my head, to prepare my courage for the worst possible ways to go, and to be ready for what I knew could not be fun : being awake all day while my brain has invasive surgery.
Christmas passed, the new year came. Most of that is a blur to me: gifts, pity, love, fear. Then shortly into the new year the time came to fly to Montreal. Surgery is coming. We were headed to the MNI for the operation, but stayed in a friend of my mom's condo. It was a nice place, but not such a nice night. I slept sound though. I knew the value of those hours of closed eyes and peaceful mind. One thing I've held to through this all is I've never lost a night of sleep. Others have lost nights thinking of me, but no matter what fear has been in my heart when I've laid down and closed my eyes, my mind has let it go and let me sleep.
Waking up that morning felt like game day, ready for batle. We were up with the crack of dawn, stumbling into the grey dirty streets of winter Montreal. From that moment into surgery is something of a blur for me. I got to the hospital and things began at 7:00 am. First they put me under, to take out a piece of my skull around the left temple to behind the ear. Then I was brought awake. We don't know the exact time schedule of the surgery, but I was awake for over 80% of the time between 7:00 am and 4:30 pm and that we know. Other than taking apart the skull, putting it back together, and stitching the scalp through that whole surgery I had to hold myself awake and focused. The reason for this was to prevent me losing my ability to speak or becoming paralyzed. This was a challenge like none I'd ever faced before in my life. The neural anaesthetic they use there is among the best in the world, but it was a challenge finding a balance with me. If my memory is right... there wasn't a real perfect balance where my physical sensation was gone and my brain was still in full function. I lay there on the table, aware of what was happening, head bolted into a frame, strapped in on most sides, right arm free, always being told to move that hand, wiggle those fingers, keep speaking to us, answer another question. The only moment where I have a perfectly clear memory through that whole surgery was the last second. I will never forget that moment. I was asked a question, and in my head I heard myself clearly enunciate the answer, and then I heard what came out of my mouth... nonsensical. I tried again. Nothing. The last I remember were comforting words and being put to sleep right away.
Then I woke up. The instant I woke up I said out loud "can I fucking SPEAK!" and I heard myself and couldn't help but feel exhilerated and relieved like I'd never imagined. When I felt myself lose the ability to speak I thought that was the line crossed and I'd never go back. Feeling myself completely out of control being drained of consciousness with the last memory of losing my ability to express myself... that was some shit. So I woke up feeling like king of the fucking world. I scared/startled the doctors by how loud I bellowed after I heard myself "FUUUUCKKK YEAAHHH!!!!" pumping my fist into the air, head still bolted onto the table. I'm not sure I was supposed to wake up that quickly. I was brought down the elevator still on a rush, grinning ear to ear, hand in the air, laughing and smiling and crying with joy that I'd made it through that surgery and held to myself. Things were far from over then, but I'd made it through one hell of an experience.
The thing is, I didn't even realize how much so until recently. My blacked out memory, editing most of the surgery out, only remembering that last moment of failure, was what I recounted to myself as the full surgery. In my head until conversations not long ago, I woke up, blurry, struggling to communicate, and was barely able to be sliced up before being knocked back out. I kind of knew that couldn't be right, because the surgery was so long, and it wouldn't take them that long to chop skull bits off, and I was supposed to be awake for the rest, but I did't know how long. When I try to recount what it was like to hold myself still for at least 7 waking hours of surgical instruments inside my brain, and knowing that it's on record I was a serious challenge to anaesthetize well, and who I am inside, I speculatively know what I went through in that surgery. It shows in me when I go to do and experience new things. My sensitivity to pain is gone. That shit doesn't matter to me anymore, it is a tool for understanding the body and can be overcome. I think I learned that on the table. I'm almost certain that surgery was a battle for me, and that I was presented with a choice in it. I am almost certain I had a choice between levels of anaesthetic that risked me losing consciousness and surgical stability vs a level that let me feel at least some of the pain of what was happening. I know myself and know what I would have chosen in a split second, and if that's true some of what's changed within me makes a lot more sense, and brings a new context to that moment of losing my speech. I know what it felt like. It felt like the last ounce of energy within myself, the last bit of drive in my heart had been used, I'd pushed myself to the true edge of my strength of will and found the failing point. I know when I was going to darkness then I did not feel weak, I did not feel cowardly, but I felt defeated. That was a lesson that I failed to embrace for some time. It is why death is not so scary anymore. I know so long that in dying I've used every ounce of drive I have, burnt out like a burning fire, it won't matter when it comes.
That wasn't the last lesson I learned while lying in that hospital, but it might be the heaviest one, and the one that took me the longest to really embrace. In the days that followed, where I once again lost my ability to speak for nearly a week, where my skull filled up with fluid and blew up a balloon on the side of my head, where I learned to turn on and off parts of my brain with an ice pack, and where I began to see clearly the tax I'd called upon those supporting and surrounding me as I sunk downwards preparing myself for that surgery. Those are another story on their own though I think.
I've dropped off the web for a while. It's been busy times! I've found since opening myself up to what's going on inside more I've reconnected with an active purposeful life more and more every day. I'm scheming and dreaming all the time now about how I'm going to start myself a new successful life by taking the skills I've developed, the passions I have, and the incredible luck I have in that my parents are willing and able to help me make a start here. Dogs, trees, and the ocean. We'll see where that goes.
For now though, and for here, I want to get back to the more serious side of the story and one part that's been on my mind a lot lately: the operation. I've actually had some serious moments of clarity in retrospect of it lately, and am coming more towards grasping the significance it held for me and the lessons I learned in that experience. Most of my memory of it is blacked out or blurry, and some parts of what I will recount may be my best guess and interpretation of the haze rather than the clear objective truth, but I'm going to try to share what that was for me.
The first part of the challenge was the waiting game. Once I knew it was coming I began to steel myself towards it. I withdrew inwards, seeking to insure myself and those around me against the chances I was warned of. 2% paralysis, 2% loss of speech, >1% death. While those aren't big numbers, for consequences so heavy they felt pretty severe. I was in a relationship then, one I'd handled like a doofus in many ways from the very beginning, and that was exponentially increased by the stress, the anxiety, and I think deep inside me a desire to push people away from me for fear of hurting them, by failing to survive the surgery or make it through as my full self. In those months there was no greater fear than of coming out disabled and having to watch helpless while I destroyed the people around me. This fear and seeking self-protection though created far more harm than good. I wasn't actually unfaithful, but I might as well have been, and I just pulled inwards, played video games, got fat, and stopped getting laid eventually. Inside though I was steeling myself for battle. I knew there was a moment coming more decisive than any of that, and I wanted to be as ready for it as possible. I sought to confront the fears as best I could in my head, to prepare my courage for the worst possible ways to go, and to be ready for what I knew could not be fun : being awake all day while my brain has invasive surgery.
Christmas passed, the new year came. Most of that is a blur to me: gifts, pity, love, fear. Then shortly into the new year the time came to fly to Montreal. Surgery is coming. We were headed to the MNI for the operation, but stayed in a friend of my mom's condo. It was a nice place, but not such a nice night. I slept sound though. I knew the value of those hours of closed eyes and peaceful mind. One thing I've held to through this all is I've never lost a night of sleep. Others have lost nights thinking of me, but no matter what fear has been in my heart when I've laid down and closed my eyes, my mind has let it go and let me sleep.
Waking up that morning felt like game day, ready for batle. We were up with the crack of dawn, stumbling into the grey dirty streets of winter Montreal. From that moment into surgery is something of a blur for me. I got to the hospital and things began at 7:00 am. First they put me under, to take out a piece of my skull around the left temple to behind the ear. Then I was brought awake. We don't know the exact time schedule of the surgery, but I was awake for over 80% of the time between 7:00 am and 4:30 pm and that we know. Other than taking apart the skull, putting it back together, and stitching the scalp through that whole surgery I had to hold myself awake and focused. The reason for this was to prevent me losing my ability to speak or becoming paralyzed. This was a challenge like none I'd ever faced before in my life. The neural anaesthetic they use there is among the best in the world, but it was a challenge finding a balance with me. If my memory is right... there wasn't a real perfect balance where my physical sensation was gone and my brain was still in full function. I lay there on the table, aware of what was happening, head bolted into a frame, strapped in on most sides, right arm free, always being told to move that hand, wiggle those fingers, keep speaking to us, answer another question. The only moment where I have a perfectly clear memory through that whole surgery was the last second. I will never forget that moment. I was asked a question, and in my head I heard myself clearly enunciate the answer, and then I heard what came out of my mouth... nonsensical. I tried again. Nothing. The last I remember were comforting words and being put to sleep right away.
Then I woke up. The instant I woke up I said out loud "can I fucking SPEAK!" and I heard myself and couldn't help but feel exhilerated and relieved like I'd never imagined. When I felt myself lose the ability to speak I thought that was the line crossed and I'd never go back. Feeling myself completely out of control being drained of consciousness with the last memory of losing my ability to express myself... that was some shit. So I woke up feeling like king of the fucking world. I scared/startled the doctors by how loud I bellowed after I heard myself "FUUUUCKKK YEAAHHH!!!!" pumping my fist into the air, head still bolted onto the table. I'm not sure I was supposed to wake up that quickly. I was brought down the elevator still on a rush, grinning ear to ear, hand in the air, laughing and smiling and crying with joy that I'd made it through that surgery and held to myself. Things were far from over then, but I'd made it through one hell of an experience.
The thing is, I didn't even realize how much so until recently. My blacked out memory, editing most of the surgery out, only remembering that last moment of failure, was what I recounted to myself as the full surgery. In my head until conversations not long ago, I woke up, blurry, struggling to communicate, and was barely able to be sliced up before being knocked back out. I kind of knew that couldn't be right, because the surgery was so long, and it wouldn't take them that long to chop skull bits off, and I was supposed to be awake for the rest, but I did't know how long. When I try to recount what it was like to hold myself still for at least 7 waking hours of surgical instruments inside my brain, and knowing that it's on record I was a serious challenge to anaesthetize well, and who I am inside, I speculatively know what I went through in that surgery. It shows in me when I go to do and experience new things. My sensitivity to pain is gone. That shit doesn't matter to me anymore, it is a tool for understanding the body and can be overcome. I think I learned that on the table. I'm almost certain that surgery was a battle for me, and that I was presented with a choice in it. I am almost certain I had a choice between levels of anaesthetic that risked me losing consciousness and surgical stability vs a level that let me feel at least some of the pain of what was happening. I know myself and know what I would have chosen in a split second, and if that's true some of what's changed within me makes a lot more sense, and brings a new context to that moment of losing my speech. I know what it felt like. It felt like the last ounce of energy within myself, the last bit of drive in my heart had been used, I'd pushed myself to the true edge of my strength of will and found the failing point. I know when I was going to darkness then I did not feel weak, I did not feel cowardly, but I felt defeated. That was a lesson that I failed to embrace for some time. It is why death is not so scary anymore. I know so long that in dying I've used every ounce of drive I have, burnt out like a burning fire, it won't matter when it comes.
That wasn't the last lesson I learned while lying in that hospital, but it might be the heaviest one, and the one that took me the longest to really embrace. In the days that followed, where I once again lost my ability to speak for nearly a week, where my skull filled up with fluid and blew up a balloon on the side of my head, where I learned to turn on and off parts of my brain with an ice pack, and where I began to see clearly the tax I'd called upon those supporting and surrounding me as I sunk downwards preparing myself for that surgery. Those are another story on their own though I think.
Monday 4 November 2013
Stopping By
Hi everyone,
That last post took a lot out of me haha. I feel like I vented a lot of what I had to say in that, and had a couple days of processing and adjusting to deal with before I came back. It was interesting, I think spilling all that out of me mentally almost provided a direct physical release of tension. Following that post I really got caught up in stretching and borderline-meditation, for about 6 hours steady I was almost exclusively focused inward and at my body and sorting out tension and issues. I kept the same up the next day, stretching as long and vigorously as I could handle before then contrast showering, keeping the body at very high temperature while stretching. The changes I was able to make were remarkable, and very satisfying.
I'm feeling good now. It helped alot when my Dad got back and I got to talk to him. More and more my plans moving forward get clearer and feel more possible. Everything is very dynamic now and constantly changing, or I'd be sharing more, but as I bring more of these ideas to reality I will share them more.
The one thing that's a bit of a stress/concern right now is 2 weeks today I have my second MRI. This is one of those objective, decisive moments. At the first one there was no sign of growth but no sign of shrinkage. This MRI could go either way, all my subjective observations about how I feel could either be backed up with serious effects and progress or discounted by a dull lump sitting just the same size or even growing. If it hasn't shrinked that doesn't mean too much either way. It might not shrink at all even by the end, but even if that was the case it could be stopped from growing, and held against that wall a long time. The only thing that would be really bad is if there was even a tiny sign of growth. At that point more serious confrontations will thrust upon us very quickly. The chances of that do feel very slim though, and all evidence thus far points against it. Rational objective knowledge aside, I will certainly feel my anxiety levels creep up on me as I approach closer and closer to that moment of recognition.
Trick will be to keep busy and have as much fun as possible! I'm stuck in town for a day today, but I'll hopefully see some friends and take care of a few useful things. For now though I'm playing the new Batman game. So cool.
Later
That last post took a lot out of me haha. I feel like I vented a lot of what I had to say in that, and had a couple days of processing and adjusting to deal with before I came back. It was interesting, I think spilling all that out of me mentally almost provided a direct physical release of tension. Following that post I really got caught up in stretching and borderline-meditation, for about 6 hours steady I was almost exclusively focused inward and at my body and sorting out tension and issues. I kept the same up the next day, stretching as long and vigorously as I could handle before then contrast showering, keeping the body at very high temperature while stretching. The changes I was able to make were remarkable, and very satisfying.
I'm feeling good now. It helped alot when my Dad got back and I got to talk to him. More and more my plans moving forward get clearer and feel more possible. Everything is very dynamic now and constantly changing, or I'd be sharing more, but as I bring more of these ideas to reality I will share them more.
The one thing that's a bit of a stress/concern right now is 2 weeks today I have my second MRI. This is one of those objective, decisive moments. At the first one there was no sign of growth but no sign of shrinkage. This MRI could go either way, all my subjective observations about how I feel could either be backed up with serious effects and progress or discounted by a dull lump sitting just the same size or even growing. If it hasn't shrinked that doesn't mean too much either way. It might not shrink at all even by the end, but even if that was the case it could be stopped from growing, and held against that wall a long time. The only thing that would be really bad is if there was even a tiny sign of growth. At that point more serious confrontations will thrust upon us very quickly. The chances of that do feel very slim though, and all evidence thus far points against it. Rational objective knowledge aside, I will certainly feel my anxiety levels creep up on me as I approach closer and closer to that moment of recognition.
Trick will be to keep busy and have as much fun as possible! I'm stuck in town for a day today, but I'll hopefully see some friends and take care of a few useful things. For now though I'm playing the new Batman game. So cool.
Later
Friday 1 November 2013
Welp, here goes everything.
This began as me writing a set of bulletin points for a conversation I was going to have with my Dad tonight. I thought at first it would be a brief set of points to organize and help structure bringing him up to date on what had changed since he left for his safari about a month ago. I did not anticipate what would come out of me. Trying to put on paper what I wanted to share with him somehow let me tap into and express a lot of the thoughts that have been rushing through me at terminal velocity in these past days. It's not a perfect expression of them. It wasn't intended to be a blog post, it was just my quickthought writing, to help me stay organized on what I had to say. And then when I let myself move from the objective to the subjective as I sought to recount the story of what was happening in my mind, I found I'd tapped into a far greater insight than I had expected, and the best way to recognize that insight was to simply let it flow onto paper. This is unedited, it's just what I thought, and wrote at about a million miles a minute. I'm stoned as hell right now, so judge as you will, but I think this is a deeper part of myself than I've been able to share with anyone before, and that being able to see myself so clearly may change my life. This is as honest as I can get.
1. Physical status: blood test/bp 100%. weight loss significant but no concern due to external factors. last check ~210, likely still cutting. Appetite definitely down but confident still meeting nutrient needs just lowered caloric volume by focusing on nutrient density. Consider shrinking of size appropriate to future goals, reduce wear+tear, no need for physical contact style strength. Maintain ability to run saw/quad but improve endurance. Intensive work on posture/flexibility/solving old soft tissue problems. Surprised with success of independent effort. Finding research/experience combined with getting stoned and intensively focusing on body-mind connection can yield very impressive results, especially when aided by pre-release from massage. Contrast showers a must. Sense of cleansing body of bad deposits. Feel most comfortable keeping very warm temperature to mild sweat and drinking lots of water. Noticed recently armpits in particular sweat more than before while other areas sweat less. Interesting change of bodily phenomenon. Seems to be an external representation of many underlying changed brought about. Work in solving problems with back/neck/shoulders/hips/NECK has seemed to bring about substantial changes in even the feel of my body. Very interested in maintaining focus. Not certain about interrelation between marijuana, chemotherapy, and any other chemical intake. Notice that most deep insight and body connection does in fact occur when at high levels of THC intake, uncertain if direct physical consequence or pure psychosomatic effect via change of state of mind, however whichever is the cause the effect is defined.
2. Mental status: interesting. Far, far more positive than ever prior since having been diagnosed with tumor. Discovering new kind of confidence in self-ability... rediscovering the value of arrogane. Health statistics have compounded enough for me to give me a true feeling of being "superior", able to face challenges and conquer things that would leave most in their dust. I feel as though I've always known that about myself but I've held myself back from admitting it. Allowing myself to embrace the arrogance of superiority has given me a different perspective upon the world and my opportunity within it. I feel far more able to overcome such great challenges and find success. The new perspective afforded has granted far more ideas and insight into future potential, and I have gone from a lost cripple, stumbling in the shadows, to a strong but injured man stepping back upon the forefront. I know far more clearly what I value, what I need, and where my goals are. I will no longer bend to the will of others constantly, but instead I will drive my own path forward. That does not mean I am too good to need help. In discovering this strength alongside it I have rediscovered my vulnerability. Letting myself open to the highs has also opened the lows. I have relearned to communicate with those who I trust and depend upon that which I need and want. I have let go of the feeling of being too strong to need help, and in doing so I have not found weakness but further strength. Watching myself in retrospect travel through these steps grants a different type of insight into the works I read as part of my philosophy studies. I think this experience has wisened me in a way I needed more than I ever understood. This tumor has given me an experience I needed to become who I was meant to become, to actualize the potential I was granted. I have been an atheist since I was incredibly small, but I feel as though in this experience I have come in touch with a sense of a greater interconnected power, and a will to push forward in a direction. Before I went to Bishop's, for most of my high school time and even a while before that I had a clear resolution of what I needed to do. I thought, I knew, I needed to experience what it meant to be a warrior. I wanted to go to RMC, to learn the discipline, the strength, the willpower and resolve it took to deal with the terrors one must face. I knew there was wisdom in that experience that is necessary for me to become who I wanted to become. I had confidence in my strength of will, my resolve, my leadership potential, that core of myself which was born into me, blessed by the genes and history of my family and the favourable touch of luck. I knew at the darkest tests, I could hold to the ethics and principles that were precious to the working of our military. I had dreamed as a teen, one of my favourite fantasies was fighting to the death or sacrificing my life to save the lives of many. I ran through countless such scenarios in my head. When I lose my temper the worst it is not in self defense, but in defense of those around me. I am a man whose greatest drive comes from the experience of a team that is bound in blood, and relies upon each other to the absolute core, and has the will and resolve to do everything needed to accomplish it. However, what I watched happen in the world grew up shattered my dream of doing that. When we went to Afghanistan amidst the controvery and questions, and as our role there developed, and I began to see the force of the military-industrial complex that reigns so greatly upon our world, I felt it had become something I could no longer let myself be a part of. I reflected deeply on what I considered in life before that point, and I felt lost. I had no purpose or goal anymore, no understanding of what I was meant to be, and that was what sent me first around the world to australia, alone at 18 exploring and experiencing, and then into the philosophy degree at bishop's. I wanted to find a new meaning, a new purpose to life. In the time when I did not connect with such a purpose I began to destroy myself. I did not recognize it at the time, but I sought pleasure and release in a short term fashion that was blind and purposeless. Between drugs, meaningless and not that great sex, fighting, eating badly, drinking in drastic excess, smoking, and just failing to care for and maintain the potential of the body I was granted. Somehow thanks to the strength I was given rather than the strength I earned I made it through that experience with only a few scars and a tumor. Many times in those years I deserved to die for what I did. I took risks too great, I broke ethics too firm, and lost myself deeply... It is only now that I rediscovered myself, and it is this very morning that I realized how. Not to discount the acts of warriors and the value of such experience, I can not say I have been tested on the field, but this experience has granted for me a lot of what I needed to learn from war. I have faced death and looked it in the eye, not for a brief moment in a flash, but as a dark cloud lurking over my life for years. I have confronted disability, through epilepsy, as well as the lurking fear going into surgery of paralysis, and the constant lurking shadow on the edge of the road ahead of the tumor or radiation therapy destroying my speech center, and bringing me back to what it was like in the few days post surgery when I was completely unable to speak... The demon which began to lurk heavier over me than that distant lurking cloud, which truly shook my soul to its deepest and caused me to lose sight of myself more than anything else. I almost lost to that one. I was ready to give up on myself. I know if I'd been brought to disabled by these seizures, rendered unable to live the kind of independent, productive, decisive life I feel so called towards, I would have died not long after. My soul would have given up, and the strength which has carried me through all this would have gone out like an untended fire. That carried a far heavier weight on me than the fear of death. What I've really come to understand through this time is that fuck the hell out of it everybody dies some time. There are risks for everyone every day that people never recognize. Death is something we can't ever really understand, we don't know what the fuck is going to happen when we die, probably nothing, maybe something fancy, but we might as well leave it until we get there. I would far rather die with a purpose than slowly degrade and lose myself through destruction from the inside. I think this tumour may have scared me even more than war would have. I don't know though. I remember the conversations I had with the two british marines in Bali, and the look in their eyes as they recounted their stories, and the respect that attained from me in a way I can't truly explain... I don't ever want to discount the level of courage that can be forged from the fires of war. But for me, in particular, the confrontation of slow inevitable inner destruction held a terror that I'd never imagined before. I have looked it in the eye long enough though. It looks different now. I will beat it, or I will die trying, but if I'm going to die trying I'm going to be givin er fuckin nuts until the last minut. Fuck giving up, ever. I can defeat medical statistics, I can defeat fucking anything, and if I fail then it will at least have a PURPOSE. I can set an example. I can show how to really face death, illness, destruction. WITH YOUR CHIN UP AND YOUR FINGER IN THE FUCKIN AIR AT IT! GET OUT THERE AND DO WHAT YOU WANT, FIND WHAT YOU WANT, BE WHO YOU WANT TO BE! THAT LIES WITHIN YOU, SO BRING IT OUT.
Or at least watch me. I'm going to burn brightly from here, to a level I never have before. Enjoy it while it lasts. I think the first step in rediscovering this courage could be just sharing this inner dialogue with the world. I will follow it briefly with a little rational discourse I feel necessary to avoid misinterpretations of me.
While I know I'm an exceptional person, smarter, stronger, braver, than almost everyone I see, I also understand I'm not. This all is how the world looks from inside me, how I find the best part of myself, where I dig to find the strength I need to confront these things. I think that in their own way, maybe vastly different from me, everyone has an inner strength that has great value, a potential that can be actualized if you can learn to recognize it and care for it and bring it about into reality. This is my way. I need this way. If you don't want to deal with a bull-headed, loud, bearded, hard working country guy who loves the ocean, finds fishing to be perhaps the most fun thing in existence, but is also addicted to the hard work of the forest, the ranges of the mountains, the feeling of exploring and experiencing new places, and doing so slightly stubbornly independently, then you might not enjoy me too much. I am what I am, and instead of trying to change and compromise it I'm going to make the most I can of it. I am good at what I'm good at, and shitty as hell at some stuff I'm not. But I intend to work harder, stay stronger, and prove myself more than you. See what you can do about it.
1. Physical status: blood test/bp 100%. weight loss significant but no concern due to external factors. last check ~210, likely still cutting. Appetite definitely down but confident still meeting nutrient needs just lowered caloric volume by focusing on nutrient density. Consider shrinking of size appropriate to future goals, reduce wear+tear, no need for physical contact style strength. Maintain ability to run saw/quad but improve endurance. Intensive work on posture/flexibility/solving old soft tissue problems. Surprised with success of independent effort. Finding research/experience combined with getting stoned and intensively focusing on body-mind connection can yield very impressive results, especially when aided by pre-release from massage. Contrast showers a must. Sense of cleansing body of bad deposits. Feel most comfortable keeping very warm temperature to mild sweat and drinking lots of water. Noticed recently armpits in particular sweat more than before while other areas sweat less. Interesting change of bodily phenomenon. Seems to be an external representation of many underlying changed brought about. Work in solving problems with back/neck/shoulders/hips/NECK has seemed to bring about substantial changes in even the feel of my body. Very interested in maintaining focus. Not certain about interrelation between marijuana, chemotherapy, and any other chemical intake. Notice that most deep insight and body connection does in fact occur when at high levels of THC intake, uncertain if direct physical consequence or pure psychosomatic effect via change of state of mind, however whichever is the cause the effect is defined.
2. Mental status: interesting. Far, far more positive than ever prior since having been diagnosed with tumor. Discovering new kind of confidence in self-ability... rediscovering the value of arrogane. Health statistics have compounded enough for me to give me a true feeling of being "superior", able to face challenges and conquer things that would leave most in their dust. I feel as though I've always known that about myself but I've held myself back from admitting it. Allowing myself to embrace the arrogance of superiority has given me a different perspective upon the world and my opportunity within it. I feel far more able to overcome such great challenges and find success. The new perspective afforded has granted far more ideas and insight into future potential, and I have gone from a lost cripple, stumbling in the shadows, to a strong but injured man stepping back upon the forefront. I know far more clearly what I value, what I need, and where my goals are. I will no longer bend to the will of others constantly, but instead I will drive my own path forward. That does not mean I am too good to need help. In discovering this strength alongside it I have rediscovered my vulnerability. Letting myself open to the highs has also opened the lows. I have relearned to communicate with those who I trust and depend upon that which I need and want. I have let go of the feeling of being too strong to need help, and in doing so I have not found weakness but further strength. Watching myself in retrospect travel through these steps grants a different type of insight into the works I read as part of my philosophy studies. I think this experience has wisened me in a way I needed more than I ever understood. This tumor has given me an experience I needed to become who I was meant to become, to actualize the potential I was granted. I have been an atheist since I was incredibly small, but I feel as though in this experience I have come in touch with a sense of a greater interconnected power, and a will to push forward in a direction. Before I went to Bishop's, for most of my high school time and even a while before that I had a clear resolution of what I needed to do. I thought, I knew, I needed to experience what it meant to be a warrior. I wanted to go to RMC, to learn the discipline, the strength, the willpower and resolve it took to deal with the terrors one must face. I knew there was wisdom in that experience that is necessary for me to become who I wanted to become. I had confidence in my strength of will, my resolve, my leadership potential, that core of myself which was born into me, blessed by the genes and history of my family and the favourable touch of luck. I knew at the darkest tests, I could hold to the ethics and principles that were precious to the working of our military. I had dreamed as a teen, one of my favourite fantasies was fighting to the death or sacrificing my life to save the lives of many. I ran through countless such scenarios in my head. When I lose my temper the worst it is not in self defense, but in defense of those around me. I am a man whose greatest drive comes from the experience of a team that is bound in blood, and relies upon each other to the absolute core, and has the will and resolve to do everything needed to accomplish it. However, what I watched happen in the world grew up shattered my dream of doing that. When we went to Afghanistan amidst the controvery and questions, and as our role there developed, and I began to see the force of the military-industrial complex that reigns so greatly upon our world, I felt it had become something I could no longer let myself be a part of. I reflected deeply on what I considered in life before that point, and I felt lost. I had no purpose or goal anymore, no understanding of what I was meant to be, and that was what sent me first around the world to australia, alone at 18 exploring and experiencing, and then into the philosophy degree at bishop's. I wanted to find a new meaning, a new purpose to life. In the time when I did not connect with such a purpose I began to destroy myself. I did not recognize it at the time, but I sought pleasure and release in a short term fashion that was blind and purposeless. Between drugs, meaningless and not that great sex, fighting, eating badly, drinking in drastic excess, smoking, and just failing to care for and maintain the potential of the body I was granted. Somehow thanks to the strength I was given rather than the strength I earned I made it through that experience with only a few scars and a tumor. Many times in those years I deserved to die for what I did. I took risks too great, I broke ethics too firm, and lost myself deeply... It is only now that I rediscovered myself, and it is this very morning that I realized how. Not to discount the acts of warriors and the value of such experience, I can not say I have been tested on the field, but this experience has granted for me a lot of what I needed to learn from war. I have faced death and looked it in the eye, not for a brief moment in a flash, but as a dark cloud lurking over my life for years. I have confronted disability, through epilepsy, as well as the lurking fear going into surgery of paralysis, and the constant lurking shadow on the edge of the road ahead of the tumor or radiation therapy destroying my speech center, and bringing me back to what it was like in the few days post surgery when I was completely unable to speak... The demon which began to lurk heavier over me than that distant lurking cloud, which truly shook my soul to its deepest and caused me to lose sight of myself more than anything else. I almost lost to that one. I was ready to give up on myself. I know if I'd been brought to disabled by these seizures, rendered unable to live the kind of independent, productive, decisive life I feel so called towards, I would have died not long after. My soul would have given up, and the strength which has carried me through all this would have gone out like an untended fire. That carried a far heavier weight on me than the fear of death. What I've really come to understand through this time is that fuck the hell out of it everybody dies some time. There are risks for everyone every day that people never recognize. Death is something we can't ever really understand, we don't know what the fuck is going to happen when we die, probably nothing, maybe something fancy, but we might as well leave it until we get there. I would far rather die with a purpose than slowly degrade and lose myself through destruction from the inside. I think this tumour may have scared me even more than war would have. I don't know though. I remember the conversations I had with the two british marines in Bali, and the look in their eyes as they recounted their stories, and the respect that attained from me in a way I can't truly explain... I don't ever want to discount the level of courage that can be forged from the fires of war. But for me, in particular, the confrontation of slow inevitable inner destruction held a terror that I'd never imagined before. I have looked it in the eye long enough though. It looks different now. I will beat it, or I will die trying, but if I'm going to die trying I'm going to be givin er fuckin nuts until the last minut. Fuck giving up, ever. I can defeat medical statistics, I can defeat fucking anything, and if I fail then it will at least have a PURPOSE. I can set an example. I can show how to really face death, illness, destruction. WITH YOUR CHIN UP AND YOUR FINGER IN THE FUCKIN AIR AT IT! GET OUT THERE AND DO WHAT YOU WANT, FIND WHAT YOU WANT, BE WHO YOU WANT TO BE! THAT LIES WITHIN YOU, SO BRING IT OUT.
Or at least watch me. I'm going to burn brightly from here, to a level I never have before. Enjoy it while it lasts. I think the first step in rediscovering this courage could be just sharing this inner dialogue with the world. I will follow it briefly with a little rational discourse I feel necessary to avoid misinterpretations of me.
While I know I'm an exceptional person, smarter, stronger, braver, than almost everyone I see, I also understand I'm not. This all is how the world looks from inside me, how I find the best part of myself, where I dig to find the strength I need to confront these things. I think that in their own way, maybe vastly different from me, everyone has an inner strength that has great value, a potential that can be actualized if you can learn to recognize it and care for it and bring it about into reality. This is my way. I need this way. If you don't want to deal with a bull-headed, loud, bearded, hard working country guy who loves the ocean, finds fishing to be perhaps the most fun thing in existence, but is also addicted to the hard work of the forest, the ranges of the mountains, the feeling of exploring and experiencing new places, and doing so slightly stubbornly independently, then you might not enjoy me too much. I am what I am, and instead of trying to change and compromise it I'm going to make the most I can of it. I am good at what I'm good at, and shitty as hell at some stuff I'm not. But I intend to work harder, stay stronger, and prove myself more than you. See what you can do about it.
Thursday 31 October 2013
Happy Halloween
Bit of a different Halloween this year. Still nice though. Celebrated with just a big fire and a short visit from family. Another good day, just further work into getting this camp turned right into a home. It's exciting, but development is slowed down a bit waiting on people to do the types of work I can't do. I'll write about what's going on around here once the story has developed a bit more.
For now I'm going to get back to the more central issue, and the part of it my focus has been most directed towards recently. The Body. I've found that this time on chemo has given me an opportunity/forced me to get in touch with the basics of what is going on in my body and looking after it. This first showed itself in the medical limitations. I had to be careful of what I did to avoid risking harm or any such. Then the symptoms began. First I had to control and change what I ate. Processed foods just don't work, greasy fried stuff became nauseating, large amounts of grains stopped being good, meat quantities even had to go down! The way I eat has become fundamentally different than when I was not on chemo. I hold to some similar core tenets, but I eat a ton less, of much more healthy, clean food. An interesting particular point of insight I noticed lately in how it's changed my digestive system: I need to chew way more. I know you're not supposed to, but ever since I was a little kid I took big chunk bites and just ripped em and ate em. I don't know why, I guess I felt like it was the carnivorous way. To do that now however, which I finally noticed a few days ago I was still letting myself do a bit, was irritating my stomach a ton. It gives me acid reflux and just discomfort, and I can feel all my blood pull into my stomach. I now need to make sure to pre-process food that I'm taking into the system as much as possible. My digestive system is still working, it's just high maintenance.
Next, the tension and stress brought pain out in my back, so I began stretching. Then I signed up for some physio and massage. During the massages, I went for a bit of an "aggresive" masseuse, who was quite cute and surprisingly willing to push on those muscle knots to that satisfyingly painful point where it actually has an effect. During these, I worked on breathing exercises to help them work. Then I kept working on those, and stretching. More and more this has added up, and I think today I spent nearly 6 hours doing stretching. I felt myself build up huge stores of lactic acid, and twice in the day did contrast showers to flush it out. I've gotten conscious of flaws in my posture, and have begun to change things that have been big problems for me for ages. My shoulders are coming back to the right spot, hips lining up better, back and neck straighter... The stretching methods I've done have been... different than I tried in gym class. I've spoken to a couple people who do yoga and the breathing methods I've done are apparently the same as some of theirs. I've shocked myself at my ability to break muscle knots and reposition joints though, it's very hard to explain but last night and today in particular things seemed to be working so well it was surreal. I noticed however, in the few weeks before I started this blog when I was in a bad place, I was less on top of this, didn't get any massages, and things got bad again very quickly. I was extremely sore all the time prior to getting back on top of it. Seems like my body in general can work just great, but it's higher maintenance now. As a note, I am WAY better at stretching if I smoke a doobie. I find it really supports my conscious awareness of the body, I can way more readily identify and stretch the one particular muscle that's knotted, or find just the right angle to stretch/release the knot that's been bugging me for ages and I can't figure out. I'm sure that's not true for everyone though. I think it's that it calms me down a whole lot and makes me more restful and at peace. Anyways, moving on.
So, the interesting point I'm coming to is this: am I coming out of chemo healthier than I went in? Perhaps this time of facing a daunting challenge of health has actually awakened a very valuable inner part of myself. I've lost 20 lbs, I'm straightening up, and feeling great (most of the time). I'm not saying it's taking no tax on me or chemo is a new way of going to fat camp, just what if it is possible to make lemonade out of lemons to that degree? Just another goal to add to the list. I think that it's an interesting reveal to me of the level of body awareness that is attainable and the value it can have. I hope to keep improving. I feel like chemo can be a valuable lesson for me.
For now I'm going to get back to the more central issue, and the part of it my focus has been most directed towards recently. The Body. I've found that this time on chemo has given me an opportunity/forced me to get in touch with the basics of what is going on in my body and looking after it. This first showed itself in the medical limitations. I had to be careful of what I did to avoid risking harm or any such. Then the symptoms began. First I had to control and change what I ate. Processed foods just don't work, greasy fried stuff became nauseating, large amounts of grains stopped being good, meat quantities even had to go down! The way I eat has become fundamentally different than when I was not on chemo. I hold to some similar core tenets, but I eat a ton less, of much more healthy, clean food. An interesting particular point of insight I noticed lately in how it's changed my digestive system: I need to chew way more. I know you're not supposed to, but ever since I was a little kid I took big chunk bites and just ripped em and ate em. I don't know why, I guess I felt like it was the carnivorous way. To do that now however, which I finally noticed a few days ago I was still letting myself do a bit, was irritating my stomach a ton. It gives me acid reflux and just discomfort, and I can feel all my blood pull into my stomach. I now need to make sure to pre-process food that I'm taking into the system as much as possible. My digestive system is still working, it's just high maintenance.
Next, the tension and stress brought pain out in my back, so I began stretching. Then I signed up for some physio and massage. During the massages, I went for a bit of an "aggresive" masseuse, who was quite cute and surprisingly willing to push on those muscle knots to that satisfyingly painful point where it actually has an effect. During these, I worked on breathing exercises to help them work. Then I kept working on those, and stretching. More and more this has added up, and I think today I spent nearly 6 hours doing stretching. I felt myself build up huge stores of lactic acid, and twice in the day did contrast showers to flush it out. I've gotten conscious of flaws in my posture, and have begun to change things that have been big problems for me for ages. My shoulders are coming back to the right spot, hips lining up better, back and neck straighter... The stretching methods I've done have been... different than I tried in gym class. I've spoken to a couple people who do yoga and the breathing methods I've done are apparently the same as some of theirs. I've shocked myself at my ability to break muscle knots and reposition joints though, it's very hard to explain but last night and today in particular things seemed to be working so well it was surreal. I noticed however, in the few weeks before I started this blog when I was in a bad place, I was less on top of this, didn't get any massages, and things got bad again very quickly. I was extremely sore all the time prior to getting back on top of it. Seems like my body in general can work just great, but it's higher maintenance now. As a note, I am WAY better at stretching if I smoke a doobie. I find it really supports my conscious awareness of the body, I can way more readily identify and stretch the one particular muscle that's knotted, or find just the right angle to stretch/release the knot that's been bugging me for ages and I can't figure out. I'm sure that's not true for everyone though. I think it's that it calms me down a whole lot and makes me more restful and at peace. Anyways, moving on.
So, the interesting point I'm coming to is this: am I coming out of chemo healthier than I went in? Perhaps this time of facing a daunting challenge of health has actually awakened a very valuable inner part of myself. I've lost 20 lbs, I'm straightening up, and feeling great (most of the time). I'm not saying it's taking no tax on me or chemo is a new way of going to fat camp, just what if it is possible to make lemonade out of lemons to that degree? Just another goal to add to the list. I think that it's an interesting reveal to me of the level of body awareness that is attainable and the value it can have. I hope to keep improving. I feel like chemo can be a valuable lesson for me.
It's like as a car owner, going from being owner of a truck to a Ferrari. Quality hasn't gone down, but it's a lot easier to break, and needs way more checks and maintenance. While the truck doesn't need those things, if you did look after it as well as you do the more sensitive car, it will last longer and work even better. That's something I hope to keep in mind moving forward from here. While I was healthy and okay, I was not looking after my body nearly as well as I could have and took a great toll on that. I hope to make use of this forced rest time to deal with alot of the residual scar tissue and other things, and once I break all the broken bits off, rebuild the right way.
Time to get back outside to the big fire and burn a little one just for me I think.
Time to get back outside to the big fire and burn a little one just for me I think.
Tuesday 29 October 2013
Today Was A Good Day
Hello again,
So first, I've posted a link to an album in the side. It's not perfectly organized or anything, but it shares a few pictures of my home, my life, and what I'm up to. If you look through it while you read here some pictures will match what I'm talking about, and they'll all show you the beautiful land I'm learning to call home.
Back to my goals though. I said I'd write about a day, show a day in the life, and I picked a damn good one to do it for. Once I finally got off here and finished my relaxing morning doob, I gathered the dogs and tossed them in the house, hopped on the quad, and rode over to my little mother's big cottage. Hot running water is a luxury it is hard to go without some times. I had to clean myself up and wash the blender to make a meal. While I was there I had a bit of an interesting experience, some stress that worked out well in the end. Something I've found a challenge through all this is really staying on top of myself and keeping aware of stress and anxiety, because things I found I normally had a lot of patience for I just don't have time for while already dealing with everything else. This has been something that especially of late has brought an interesting challenge. I've had to learn to show and communicate the vulnerability this stress has brought out in me, and I was able to make a good step with that today. My mom's husband Dave called me while I was having a shower, wanting to talk about clearing my stuff out of the apartment ASAP to get it rented. While I'm excited about moving out of town, I was still anxious and hesitant to go all in on expecting this place to work through the winter. Without having met with NS power I didn't know what the hookup was going to be like, and had had it built up to a monstrous undertaking. Something I've had to recognize in myself is I'm not really ready to move back in with my parents, and the idea of doing so really works me out. What lies at the base of all of it is the challenge of step parents. While they can be great people, doing huge acts of kindness for you, it is a struggle to have them feel like true family, and to trust them like that. I find my defensive instincts can be brought out easily in even minor confrontations, especially with my stepfather ( I wonder if a shrink could comment on that eh?) and that's something I've been having to manage. I just think I did better today than I have before. When he called me and was pressuring me for decisive action on finishing moving out before I felt the confidence and security in this new place actually being able to work in the short term, I was actually able to communicate calmly to him that I recognized his good intent and rational stance, but that I needed to take an emotional position and be clear that until I knew I could trust this new home to live in through the depths of winter, I wasn't ready to risk being thrust back under my mom's household. I talked to my mom after and let her know what that was, and in the end I think Dave and I bonded tighter over having been able to talk about it, instead of letting it turn into some argument over nothing, generating pointless anger between two well intended people. I've dealt with such confrontations far too much lately, and to have taken even one step towards preventing them felt really good. So while I did experience some stress dealing with that, in the end it turned into a great victory.
Next, came another step forward. Leonard, who sold me this beautiful property, called me while I was getting out of the shower, and he'd stopped by wanting to chat about some business I'd mentioned to him. I told him I'd meet him back at my spot in half hour, and ripped back on the quad. When he got there, he came as a scout, leading an army of good news. I'd spoken to him about what our friend and electrician Wendel had said about power hookup, and what he thought it would take/cost to get it to happen, and he thought it was just crazy. He'd spoken to two electrical engineers from BC hydro, and while they weren't locals they thought if we had to hold to the specs we'd been quoted it was insane. I was told I needed a 10m pass with no overhang of limbs or standing tree for full length of the line, and that they couldn't run the line over the house because of the chimney, so we were scheming moving the mobile home, running ground wire to avoid having to cut down the whole forest, all kinds of seemingly expensive, complicated schemes. Leonard was happy to hear that the real Power Eng. was coming and that I wasn't going to listen impulsively to the speculation. Was he ever right.
Right after he left, the engineer showed up, and we took a look around the lot. Within 20 minutes we had a line picked up for the poles, as simple as it could possibly be with hardly any trees to fall that I didn't want to anyway, and he gave me a cost estimate. For 130m of line, 30' poles prepared for commercial grade power if I seek to upgrade long term, ballpark 1200$. All I need to do is cut a couple patches of trees, an 8' wide corridor through perhaps 30m of bush, and have the power mast extended to 6' above roofline. So much for moving the trailer, clearing a new area, setting a new pad, or thousands of dollars of groundwire, or any of those crazy things, and hello to an officially actually affordable freakin home. I'm lovin it.
So once I got that sorted out I was excited and got down to work. I didn't take pictures before hand like I should, but I started falling some of the trees closest to the house I needed to get rid of. I got a lightbulb and snapped some shots before I took down the biggest one in that patch. It wasn't much of a tree, but I thought some might find it neat (..my mom did, okay guys?). I got a good workout of running the saw and planning what I was going to cut. It was really satisfying to be working and working with such a definite and conclusive purpose, even better than the other work I've been doing out here.
Afterwards, I was lucky enough to have a very cool visitor stop by. Rick the retired pilot, cool as hell, stopped by with his pups for a look around and a nice walk. I took him around some of the property boundaries, showed him some land, and he thought it was quite a place. It was nice to have a visitor stop by, and it's fun to get to hang out with people who have so much life experience, so different from what I've been open to. On that note, after he took off, I split some wood, cut a couple more trees down, and went over to visit Leonard and Rosa.
They are such a sweet old couple. I hung out with them for I'm not even sure how long. We just had an incredibly interesting conversation, about their land, the area, the history and its people. I learned a whole lot about Blandford in that living room. Rosa's family is the Meisners, and they date back to this area for about as long as is possible. An interesting fact is that the point of land my Mom and Dave's cottage is on is actually Meisner's point. Leonard was also very happy and satisfied to hear how simple and straightforward the power hookup will be.
Following that up, I hopped on the quad and went for dinner at The Deck, got to more officially meet Kathleen who works there and her husband Paul, who was there having lunch. I talked to her about quads, and told her about some trails. In return she shared the recipe with me for my favourite soup they make! Preeeetty sweet deal. I really love it out here. That pretty much brings me to this point. A relaxing evening by the fire, reflecting on a good day, and doing my best to share it.
So first, I've posted a link to an album in the side. It's not perfectly organized or anything, but it shares a few pictures of my home, my life, and what I'm up to. If you look through it while you read here some pictures will match what I'm talking about, and they'll all show you the beautiful land I'm learning to call home.
Back to my goals though. I said I'd write about a day, show a day in the life, and I picked a damn good one to do it for. Once I finally got off here and finished my relaxing morning doob, I gathered the dogs and tossed them in the house, hopped on the quad, and rode over to my little mother's big cottage. Hot running water is a luxury it is hard to go without some times. I had to clean myself up and wash the blender to make a meal. While I was there I had a bit of an interesting experience, some stress that worked out well in the end. Something I've found a challenge through all this is really staying on top of myself and keeping aware of stress and anxiety, because things I found I normally had a lot of patience for I just don't have time for while already dealing with everything else. This has been something that especially of late has brought an interesting challenge. I've had to learn to show and communicate the vulnerability this stress has brought out in me, and I was able to make a good step with that today. My mom's husband Dave called me while I was having a shower, wanting to talk about clearing my stuff out of the apartment ASAP to get it rented. While I'm excited about moving out of town, I was still anxious and hesitant to go all in on expecting this place to work through the winter. Without having met with NS power I didn't know what the hookup was going to be like, and had had it built up to a monstrous undertaking. Something I've had to recognize in myself is I'm not really ready to move back in with my parents, and the idea of doing so really works me out. What lies at the base of all of it is the challenge of step parents. While they can be great people, doing huge acts of kindness for you, it is a struggle to have them feel like true family, and to trust them like that. I find my defensive instincts can be brought out easily in even minor confrontations, especially with my stepfather ( I wonder if a shrink could comment on that eh?) and that's something I've been having to manage. I just think I did better today than I have before. When he called me and was pressuring me for decisive action on finishing moving out before I felt the confidence and security in this new place actually being able to work in the short term, I was actually able to communicate calmly to him that I recognized his good intent and rational stance, but that I needed to take an emotional position and be clear that until I knew I could trust this new home to live in through the depths of winter, I wasn't ready to risk being thrust back under my mom's household. I talked to my mom after and let her know what that was, and in the end I think Dave and I bonded tighter over having been able to talk about it, instead of letting it turn into some argument over nothing, generating pointless anger between two well intended people. I've dealt with such confrontations far too much lately, and to have taken even one step towards preventing them felt really good. So while I did experience some stress dealing with that, in the end it turned into a great victory.
Next, came another step forward. Leonard, who sold me this beautiful property, called me while I was getting out of the shower, and he'd stopped by wanting to chat about some business I'd mentioned to him. I told him I'd meet him back at my spot in half hour, and ripped back on the quad. When he got there, he came as a scout, leading an army of good news. I'd spoken to him about what our friend and electrician Wendel had said about power hookup, and what he thought it would take/cost to get it to happen, and he thought it was just crazy. He'd spoken to two electrical engineers from BC hydro, and while they weren't locals they thought if we had to hold to the specs we'd been quoted it was insane. I was told I needed a 10m pass with no overhang of limbs or standing tree for full length of the line, and that they couldn't run the line over the house because of the chimney, so we were scheming moving the mobile home, running ground wire to avoid having to cut down the whole forest, all kinds of seemingly expensive, complicated schemes. Leonard was happy to hear that the real Power Eng. was coming and that I wasn't going to listen impulsively to the speculation. Was he ever right.
Right after he left, the engineer showed up, and we took a look around the lot. Within 20 minutes we had a line picked up for the poles, as simple as it could possibly be with hardly any trees to fall that I didn't want to anyway, and he gave me a cost estimate. For 130m of line, 30' poles prepared for commercial grade power if I seek to upgrade long term, ballpark 1200$. All I need to do is cut a couple patches of trees, an 8' wide corridor through perhaps 30m of bush, and have the power mast extended to 6' above roofline. So much for moving the trailer, clearing a new area, setting a new pad, or thousands of dollars of groundwire, or any of those crazy things, and hello to an officially actually affordable freakin home. I'm lovin it.
So once I got that sorted out I was excited and got down to work. I didn't take pictures before hand like I should, but I started falling some of the trees closest to the house I needed to get rid of. I got a lightbulb and snapped some shots before I took down the biggest one in that patch. It wasn't much of a tree, but I thought some might find it neat (..my mom did, okay guys?). I got a good workout of running the saw and planning what I was going to cut. It was really satisfying to be working and working with such a definite and conclusive purpose, even better than the other work I've been doing out here.
Afterwards, I was lucky enough to have a very cool visitor stop by. Rick the retired pilot, cool as hell, stopped by with his pups for a look around and a nice walk. I took him around some of the property boundaries, showed him some land, and he thought it was quite a place. It was nice to have a visitor stop by, and it's fun to get to hang out with people who have so much life experience, so different from what I've been open to. On that note, after he took off, I split some wood, cut a couple more trees down, and went over to visit Leonard and Rosa.
They are such a sweet old couple. I hung out with them for I'm not even sure how long. We just had an incredibly interesting conversation, about their land, the area, the history and its people. I learned a whole lot about Blandford in that living room. Rosa's family is the Meisners, and they date back to this area for about as long as is possible. An interesting fact is that the point of land my Mom and Dave's cottage is on is actually Meisner's point. Leonard was also very happy and satisfied to hear how simple and straightforward the power hookup will be.
Following that up, I hopped on the quad and went for dinner at The Deck, got to more officially meet Kathleen who works there and her husband Paul, who was there having lunch. I talked to her about quads, and told her about some trails. In return she shared the recipe with me for my favourite soup they make! Preeeetty sweet deal. I really love it out here. That pretty much brings me to this point. A relaxing evening by the fire, reflecting on a good day, and doing my best to share it.
Bright and Early
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!
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!
Sunday 27 October 2013
Chemo: What It Is, What It Isn't, and How I'm Dealing With It.
Hey,
So time for a second step of this journey. I've appreciated greatly the signs of interest I've seen already, so I'm going to try to build the medical picture a bit better, starting with the big focus of right now: Chemotherapy.
First off, most of us have a really basic, simple understanding of chemo. I know coming into it I pictured myself waifishly thin, bald, weak, and just a fragment of myself. I'm lucky in that the type of chemotherapy I'm going through doesn't wreak such havoc on the body.
http://en.wikipedia.org/wiki/Temozolomide
That's the one. I take 165 mg/day 21 days on, 7 days off.. I'm on my 6th cycle of 12 right now. The side effects it has had on me are hard to define, but certainly far less than I expected. I've faced challenges in adaptation and management of it, but at this point I've found a very successful balance and that's part of what I hope to share. As of now it has had no effect on my blood tests in any form, my blood pressure is still ideal, I'm keeping eating healthy food at good levels, and I'm "vigourously" active (quoting my Oncologist).
My understanding of what's working for me is unavoidably subjective. I can talk about my experience, what's felt good, what's helped, and what hasn't. The first thing this unavoidably brings up is Weed. I've been prescribed medical marijuana since the beginning of my chemo, and it has (by my best gauge) been instrumental in my self management. I was asking about that from the beginning, as soon as these treatments came up. I've always liked weed, and since I had the surgery and have been banned from alcohol, it's been my only recreational drug. I also think I related to it as bit of a self therapy, bringing some peace and relaxation to my nights after work, and making it easier to step back for a few minutes. I thought that chemotherapy was just going to be a method of leverage to get cheap, legal weed. Was I ever wrong! (At first.)
I wasn't offered a prescription from any doctors, and when I brought it up with the oncologist and my neurologist, neither of them would endorse it. Neither would my old GP, who is focused on athletic medical approaches and does not support it. I had to go back to my amazing old childhood doctor, Dr. Vicky Mitchell, before I could get that going. She was quickly supportive, saying on a therapeutic basis she thought there was easily enough evidence to prescribe it, and away we went. A couple weeks later, I got a letter from Health Canada with my official slip of legality! Huzzah! A sheet came with that package about ordering from their one registered herbal services, so I ordered my maximum amount (150g) at 5$/g and waited for it to show up.
Let me tell you: if you get a prescription for medical marijuana, do NOT order from the government. That was absolutely the worst schwag I've ever paid a dollar for. I hated it and was downright unwilling to smoke it, it tasted terrible, didn't work well, and just generally sucked. That was a nasty surprise.
It quickly became time to find another source. I began with, and have greatly enjoyed, I found a website (if you google cannabis dispensary it might turn up ;) ) who have some really good product, and particularly had available edible, and refined product to help me smoke less and get more out of it. For the first few months I brought my amount up, starting off mostly smoking, then eating more, and getting more and more from them. I found in this time, more and more, that I was prioritizing the edibles. I was getting less high, less goofy, less munchies, but still the pounding migraines that came alongside the seizures in the early days were gone, there was no nausea or realy any physical bother from the chemo, and things seemed great. Over time, as the chemo built up in my system, I found I needed to eat more and more to feel good. This began to seem expensive, but was helping alot. I definitely enjoyed smoking, but that was far more of a mentally therapeutic part of the picture. The eating it on the other hand was seeming to play out more substantially, so I decided to bring my amount up. All the recommendations I found around the internet were steady at approximately 1g/day of hash oil/resin. Soo.... Big bottle of "Snake Oil" here I come! That was a tincture, designed to release beneath the tongue, of hash oil cooked into cannabis seed oil. It was noticeably better than any of the other methods, but QUITE expensive. 2000$/500ml. I am a lucky enough person to have parents who were somehow willing to pay for me to do that dosage, but I didn't feel too comfortable with it, the price just added up too much for something not proven to have any direct medical effect. So I began to increase my research... I did indeed find some interesting stuff, but it's a separate story. I found an answer another way.
In fact, I found a local charitable group who provides edible capsules for free. That's what I've been going with since. Right now I'm eating approximately 1g/day of the RESIN ie refined cannabinoid complex, decarboxylated and cooked into coconut oil, and on top of that smoking a good few doobies and bowls a day. And the really weird part is: I never even seem to get high anymore. I can feel a bit better, more relaxed, but the sensation I used to recognize of being out of my normal self, goofy, whatever is gone, at least for now.
As for what that's meant my nauseau has been keeping under check, my activity levels are high, there's no impact showing based on external judgment. This stuff is working, and working far better than I expected, and there may be even more promise on the horizon for it... but that I will return to later.
The key to what I have to say here goes two ways: one, medical marijuana is far more effective than I expected. The level to which I feel shittier when I take a break or try to stop has been well established for me now, and I plan on keeping this high dosage for the length of my chemo. When I stop I get more strange neurological sensations, more headaches, more nauseous, and greater anxiety and tension. I initially told myself it was all psychosomatic effect, all in my head, but over time I've come to be convinced more and more: at least while I'm on chemo, I'm dependent on this stuff. So it goes.
I'm absolutely certain though that while that is helping, it's not the only thing letting me get through chemotherapy. Keeping my activity level up, and paying close attention to my diet has been huge as well. I've really tried to refine what I eat, avoiding processed food, refined carbs, and chemical additives. Over time my sensitivity has come up continually, and I have to get more and more picky. What I eat in a day now would be downright hilarious to what people saw me eating a few years ago. I'm all about smoothies, flaxseed, coconut oil, fish, fruit, nuts and veggies. Since starting, I've lost 25 lbs, yet I'm still holding to full health on all signs. I think it's more a side effect of diet refinement than a side effect of chemotherapy. Another piece of advice for anyone facing a similar situation: if you are taking oral chemo, I highly suggest buffering the pre-dosage no eat time zone. My last meal every day is by around 5 pm, I need to keep a real nice empty stomach to bring that drug into, and let it move through as quickly as possible. I also drink tons and tons of water, and I'm sure that's helping too.
Through the summer I let the doctors restrict my activity, and I think that's one of the biggest errors I've made on chemo. They told me to be extremely cautious about intracranial pressure, so I wasn't supposed to try too hard to do anything or exert myself too thoroughly. That led, through the summer, to a bit of a lazy Dave. I did get pretty damn chubby in the first month or so after finding out about it. Through the summer I wasn't 100% lazy, but my exercise was pretty much fishing, golf, and dog walks. I craved more activity, but I held myself back in my apartment, no gym, no high intensity fun stuff, just take it easy. Over time that got to me further and further, the golf and fishing were holding me together, but then my usual golf buddy took off out of town, and our boat broke down out of the mouth of the harbour, and we had to get towed into dock by the coast guard. That was on my birthday, and it was not ideal.
Between then and a couple weeks before now was the worst part of my treatment. I stayed inside, playing games and getting high, doing nothing with my time and going crazy inside myself. I allowed the limitations of my treatment to bring me to a level of existence that didn't feel far from the great fear I sought to avoid: disability. It took a while, but I finally sought to address that problem and take some action. It was time for Dave to get back to the country. On those terms I was granted an incredible boon of luck. This property we stumbled upon, 22 acres and a minihome, is absolutely phenomenal. The woods in behind are absolutely incredible, there are streams and ponds and natural beauty through the land, and it is an expansive project of physical labour that I can attend to until hell freezes over. It's getting back to this land that let my blog earn its name. And that's what's been up the last couple weeks. Quad rides, long hikes, traversing stream, GPSing property boundary and POIs for reference, planning development, fish ponds, wells, septic, dog pens, everything. I've rediscovered activity and feel a thousand times better. So much for the doctors restriction on activity levels, no more than 30 mins at a time, nothing high intensity. I never saw my oncologist more happy than when I told her how I was running the saw for 6 hours the day before, and had been hiking in the bush for hours the day before that. I was back to myself, I feel like myself again, and I'm going to be up to some interesting stuff around this lot. I look forward to making more posts about that more fun, less serious side of the story.
Taking all this as a path, at my last test, following 5 months of chemo my blood pressure last time was 92/65, my blood test was the best my doctor had seen all week, and I've got the biggest beard I've had to date. Something's working.
Some interesting things I've had cross my mind since making the association of these things being helpful to chemotherapy. Is it possible that by working my ass off outside for as much of the time as I could between finding out about the tumour and now I've helped keep it growing slowly? Does the marijuana mean more than its minor psychological effects? What's going to come of all this in the end?
I don't have final answers for those yet, but I look forward to finding them.
Anyways, I'm getting back outside.
So time for a second step of this journey. I've appreciated greatly the signs of interest I've seen already, so I'm going to try to build the medical picture a bit better, starting with the big focus of right now: Chemotherapy.
First off, most of us have a really basic, simple understanding of chemo. I know coming into it I pictured myself waifishly thin, bald, weak, and just a fragment of myself. I'm lucky in that the type of chemotherapy I'm going through doesn't wreak such havoc on the body.
http://en.wikipedia.org/wiki/Temozolomide
That's the one. I take 165 mg/day 21 days on, 7 days off.. I'm on my 6th cycle of 12 right now. The side effects it has had on me are hard to define, but certainly far less than I expected. I've faced challenges in adaptation and management of it, but at this point I've found a very successful balance and that's part of what I hope to share. As of now it has had no effect on my blood tests in any form, my blood pressure is still ideal, I'm keeping eating healthy food at good levels, and I'm "vigourously" active (quoting my Oncologist).
My understanding of what's working for me is unavoidably subjective. I can talk about my experience, what's felt good, what's helped, and what hasn't. The first thing this unavoidably brings up is Weed. I've been prescribed medical marijuana since the beginning of my chemo, and it has (by my best gauge) been instrumental in my self management. I was asking about that from the beginning, as soon as these treatments came up. I've always liked weed, and since I had the surgery and have been banned from alcohol, it's been my only recreational drug. I also think I related to it as bit of a self therapy, bringing some peace and relaxation to my nights after work, and making it easier to step back for a few minutes. I thought that chemotherapy was just going to be a method of leverage to get cheap, legal weed. Was I ever wrong! (At first.)
I wasn't offered a prescription from any doctors, and when I brought it up with the oncologist and my neurologist, neither of them would endorse it. Neither would my old GP, who is focused on athletic medical approaches and does not support it. I had to go back to my amazing old childhood doctor, Dr. Vicky Mitchell, before I could get that going. She was quickly supportive, saying on a therapeutic basis she thought there was easily enough evidence to prescribe it, and away we went. A couple weeks later, I got a letter from Health Canada with my official slip of legality! Huzzah! A sheet came with that package about ordering from their one registered herbal services, so I ordered my maximum amount (150g) at 5$/g and waited for it to show up.
Let me tell you: if you get a prescription for medical marijuana, do NOT order from the government. That was absolutely the worst schwag I've ever paid a dollar for. I hated it and was downright unwilling to smoke it, it tasted terrible, didn't work well, and just generally sucked. That was a nasty surprise.
It quickly became time to find another source. I began with, and have greatly enjoyed, I found a website (if you google cannabis dispensary it might turn up ;) ) who have some really good product, and particularly had available edible, and refined product to help me smoke less and get more out of it. For the first few months I brought my amount up, starting off mostly smoking, then eating more, and getting more and more from them. I found in this time, more and more, that I was prioritizing the edibles. I was getting less high, less goofy, less munchies, but still the pounding migraines that came alongside the seizures in the early days were gone, there was no nausea or realy any physical bother from the chemo, and things seemed great. Over time, as the chemo built up in my system, I found I needed to eat more and more to feel good. This began to seem expensive, but was helping alot. I definitely enjoyed smoking, but that was far more of a mentally therapeutic part of the picture. The eating it on the other hand was seeming to play out more substantially, so I decided to bring my amount up. All the recommendations I found around the internet were steady at approximately 1g/day of hash oil/resin. Soo.... Big bottle of "Snake Oil" here I come! That was a tincture, designed to release beneath the tongue, of hash oil cooked into cannabis seed oil. It was noticeably better than any of the other methods, but QUITE expensive. 2000$/500ml. I am a lucky enough person to have parents who were somehow willing to pay for me to do that dosage, but I didn't feel too comfortable with it, the price just added up too much for something not proven to have any direct medical effect. So I began to increase my research... I did indeed find some interesting stuff, but it's a separate story. I found an answer another way.
In fact, I found a local charitable group who provides edible capsules for free. That's what I've been going with since. Right now I'm eating approximately 1g/day of the RESIN ie refined cannabinoid complex, decarboxylated and cooked into coconut oil, and on top of that smoking a good few doobies and bowls a day. And the really weird part is: I never even seem to get high anymore. I can feel a bit better, more relaxed, but the sensation I used to recognize of being out of my normal self, goofy, whatever is gone, at least for now.
As for what that's meant my nauseau has been keeping under check, my activity levels are high, there's no impact showing based on external judgment. This stuff is working, and working far better than I expected, and there may be even more promise on the horizon for it... but that I will return to later.
The key to what I have to say here goes two ways: one, medical marijuana is far more effective than I expected. The level to which I feel shittier when I take a break or try to stop has been well established for me now, and I plan on keeping this high dosage for the length of my chemo. When I stop I get more strange neurological sensations, more headaches, more nauseous, and greater anxiety and tension. I initially told myself it was all psychosomatic effect, all in my head, but over time I've come to be convinced more and more: at least while I'm on chemo, I'm dependent on this stuff. So it goes.
I'm absolutely certain though that while that is helping, it's not the only thing letting me get through chemotherapy. Keeping my activity level up, and paying close attention to my diet has been huge as well. I've really tried to refine what I eat, avoiding processed food, refined carbs, and chemical additives. Over time my sensitivity has come up continually, and I have to get more and more picky. What I eat in a day now would be downright hilarious to what people saw me eating a few years ago. I'm all about smoothies, flaxseed, coconut oil, fish, fruit, nuts and veggies. Since starting, I've lost 25 lbs, yet I'm still holding to full health on all signs. I think it's more a side effect of diet refinement than a side effect of chemotherapy. Another piece of advice for anyone facing a similar situation: if you are taking oral chemo, I highly suggest buffering the pre-dosage no eat time zone. My last meal every day is by around 5 pm, I need to keep a real nice empty stomach to bring that drug into, and let it move through as quickly as possible. I also drink tons and tons of water, and I'm sure that's helping too.
Through the summer I let the doctors restrict my activity, and I think that's one of the biggest errors I've made on chemo. They told me to be extremely cautious about intracranial pressure, so I wasn't supposed to try too hard to do anything or exert myself too thoroughly. That led, through the summer, to a bit of a lazy Dave. I did get pretty damn chubby in the first month or so after finding out about it. Through the summer I wasn't 100% lazy, but my exercise was pretty much fishing, golf, and dog walks. I craved more activity, but I held myself back in my apartment, no gym, no high intensity fun stuff, just take it easy. Over time that got to me further and further, the golf and fishing were holding me together, but then my usual golf buddy took off out of town, and our boat broke down out of the mouth of the harbour, and we had to get towed into dock by the coast guard. That was on my birthday, and it was not ideal.
Between then and a couple weeks before now was the worst part of my treatment. I stayed inside, playing games and getting high, doing nothing with my time and going crazy inside myself. I allowed the limitations of my treatment to bring me to a level of existence that didn't feel far from the great fear I sought to avoid: disability. It took a while, but I finally sought to address that problem and take some action. It was time for Dave to get back to the country. On those terms I was granted an incredible boon of luck. This property we stumbled upon, 22 acres and a minihome, is absolutely phenomenal. The woods in behind are absolutely incredible, there are streams and ponds and natural beauty through the land, and it is an expansive project of physical labour that I can attend to until hell freezes over. It's getting back to this land that let my blog earn its name. And that's what's been up the last couple weeks. Quad rides, long hikes, traversing stream, GPSing property boundary and POIs for reference, planning development, fish ponds, wells, septic, dog pens, everything. I've rediscovered activity and feel a thousand times better. So much for the doctors restriction on activity levels, no more than 30 mins at a time, nothing high intensity. I never saw my oncologist more happy than when I told her how I was running the saw for 6 hours the day before, and had been hiking in the bush for hours the day before that. I was back to myself, I feel like myself again, and I'm going to be up to some interesting stuff around this lot. I look forward to making more posts about that more fun, less serious side of the story.
Taking all this as a path, at my last test, following 5 months of chemo my blood pressure last time was 92/65, my blood test was the best my doctor had seen all week, and I've got the biggest beard I've had to date. Something's working.
Some interesting things I've had cross my mind since making the association of these things being helpful to chemotherapy. Is it possible that by working my ass off outside for as much of the time as I could between finding out about the tumour and now I've helped keep it growing slowly? Does the marijuana mean more than its minor psychological effects? What's going to come of all this in the end?
I don't have final answers for those yet, but I look forward to finding them.
Anyways, I'm getting back outside.
A First Step Down a Long Road
Hello,
This is something I've been telling myself I'd do for a long time. I've been recommended it by a few people, doctors, friends, family, for different reasons at different times, but they've all resounded. What I've been experiencing in the past few years is something I should share: an experience that has changed my approach and understanding to life fundamentally, like I never thought possible. Three years and not so much longer ago I began a battle that made all those rugby games, fist fights and hard days of work feel like therapeutic relaxation. But fighting harder has done nothing but made me stronger so far, and that is the real point of this blog.
First though, for those who stumble upon here or who just don't know what's been going on, a brief summary of my medical story. A bit more than three years ago at a rugby practice, I caught a knee just right in my left temple. It wasn't very hard or anything, but it felt really strange and disorienting. Following that experience, two nights later, I was warming up for a B game against U de S, and suddenly out of nowhere I had my first ever seizure. That was an incredibly disorienting, confusing experience. I didn't even admit to myself what it was at the time, but instead shook it off and played through the first half of the game. They continued however, and began to stop me from attending school, and generally shaking me up. They got significantly worse when I drank as well (and I was a bit of a drinker). It took a long time to separate them from concussion symptoms, but after a couple weeks I flew home and went to the doctors. In the end, I was lucky that I had a medical family. My GP thought it was brain damage from concussions and didn't even intend any imaging. My Dad, however, owns a private MRI clinic and we scooted in there and got one done. That was where it really began. What was supposed to be a routine investigation of concussion impact turned into the discovery of a tumour. We didn't know at the time, but it's an Astrocytoma, and it was about the size of a golf ball, but shaped kind of like a globular figure eight. That sent the world into a spiral. Parents flying home from distant countries, mothers terrified and trying to look after me, but what I remember of my feeling was clear. I tried to confront the harsh truth of what I saw on that MRI as I was left to sit alone in the doctor's lab, as the stunned neuroradiologists tried to piece together what they saw. As it was brought up on the screen I'd heard the "holy fuck" whisper from my mother, and seen the shock on their faces, and I knew it wasn't good. That big lump in my brain looked to my eyes on that day like the face of death, a grim truth, inevitable for all, facing me in a more direct confrontational position. Sitting alone after that it felt clear what I had to do: embrace the harsh truth, and seek to seize the moment and live to the best of my ability the rest of my life, whether it be years, months, or weeks. While I struggled with that in the beginning, over time I've seized to that idea further and further, and nothing has helped me more. There were more medical challenges to come (surgery, epileptic stability, rebuilding myself after it all) but I will return to them later.
The message I hope to share over and above all else is that when facing the dark fears of life (death, disease, disability) hold to hope, hold to strength, and never give up your resolve. I've been walking around with a tumour in my brain for no one knows how long now, and the last three years I've been walking away from surgery, a brush with death, and a constant sense of the unknown. In that time I've learned many new things, worked my ass off across this country, earned my independence, and then in the end, returned to home.
And that's where this story shall begin: the realization of the need to return to medical care, to begin to confront this challenge more head on.
February. Near the end, I had a seizure. First time in ages for a daytime seizure, a minor one, but nonetheless a scary experience. An error in dosage? Then another. Another, another. They returned to me, I upped the dosage, they left, then they returned again. Something had changed.
April. I've finally been forced to stop working and admit to myself: this drug isn't going to conquer this. It's not the result of a mistake, things are changing. I'm late for my MRI, I'm no longer epileptically stable, and it's time to walk back out onto that battlefield. On my way home I go...
The journey wasn't so bad, it was stressful flying my best friend and strongest ally in the cargo hold (Gotta love that Winston), but we both got home safe and sound. What came next though, was not so nice. We'd been thinking for years, telling ourselves, it wasn't growing. This MRI very solidly proved that wrong, and that it had been growing, slowly, all along. That combined with my epilepsy becoming unstable meant it was time for the next step of treatment. Now came the question: Chemotherapy or Radiation? Do I want to eat complex fancy poison for a year, or get my brain precisely nuked? Choosing the chemo was surprisingly easy. The radiation treatment will, if I have to use it, destroy my speech center inevitably. So, if it comes to that point I will be truly disabled, unable to communicate, and I'm far more scare of disability than death or pain... So chemo began.
That was 6 months ago. In that time I learned a lot about chemo, cancer, and medicine. First, and foremost: CHEMO IS NOT AS SHITTY (ALWAYS) AS I EXPECTED! That is something I want to say and then prove, a message for anyone else entering that battle. I think if I'd spoke to someone whose experience of chemo compared with mine prior to beginning it, I would have felt a lot better from the beginning, much less fear and anxiety, and I actually would have cared for myself better by staying more active, more focused, and more positive. It tooks months of pushing against limits, finding a balance, and more than anything, finding that pulling back and disengaging from the parts of life I find meaningful, is far worse for my health than the physical toll of engaging an effort. In these past 5 months I have caught 75+ sharks, cut down a few cords of wood, broken in a quad, snorkelled and collected a meal of scallops, bought a house and 22 acres, surveyed it and begun developing it, and am now going further and further with this all the time.
That is the main story I'm going to tell. That will be the real point of this blog. Sharing the experience as it was, and as it is now. I will try to combine writing about my days, my new home, my life and my experience, sharing pictures and videos as much as I can, with retrospective stories about how I came here, what it's been like, and what it's meant to me.
This is something I've been telling myself I'd do for a long time. I've been recommended it by a few people, doctors, friends, family, for different reasons at different times, but they've all resounded. What I've been experiencing in the past few years is something I should share: an experience that has changed my approach and understanding to life fundamentally, like I never thought possible. Three years and not so much longer ago I began a battle that made all those rugby games, fist fights and hard days of work feel like therapeutic relaxation. But fighting harder has done nothing but made me stronger so far, and that is the real point of this blog.
First though, for those who stumble upon here or who just don't know what's been going on, a brief summary of my medical story. A bit more than three years ago at a rugby practice, I caught a knee just right in my left temple. It wasn't very hard or anything, but it felt really strange and disorienting. Following that experience, two nights later, I was warming up for a B game against U de S, and suddenly out of nowhere I had my first ever seizure. That was an incredibly disorienting, confusing experience. I didn't even admit to myself what it was at the time, but instead shook it off and played through the first half of the game. They continued however, and began to stop me from attending school, and generally shaking me up. They got significantly worse when I drank as well (and I was a bit of a drinker). It took a long time to separate them from concussion symptoms, but after a couple weeks I flew home and went to the doctors. In the end, I was lucky that I had a medical family. My GP thought it was brain damage from concussions and didn't even intend any imaging. My Dad, however, owns a private MRI clinic and we scooted in there and got one done. That was where it really began. What was supposed to be a routine investigation of concussion impact turned into the discovery of a tumour. We didn't know at the time, but it's an Astrocytoma, and it was about the size of a golf ball, but shaped kind of like a globular figure eight. That sent the world into a spiral. Parents flying home from distant countries, mothers terrified and trying to look after me, but what I remember of my feeling was clear. I tried to confront the harsh truth of what I saw on that MRI as I was left to sit alone in the doctor's lab, as the stunned neuroradiologists tried to piece together what they saw. As it was brought up on the screen I'd heard the "holy fuck" whisper from my mother, and seen the shock on their faces, and I knew it wasn't good. That big lump in my brain looked to my eyes on that day like the face of death, a grim truth, inevitable for all, facing me in a more direct confrontational position. Sitting alone after that it felt clear what I had to do: embrace the harsh truth, and seek to seize the moment and live to the best of my ability the rest of my life, whether it be years, months, or weeks. While I struggled with that in the beginning, over time I've seized to that idea further and further, and nothing has helped me more. There were more medical challenges to come (surgery, epileptic stability, rebuilding myself after it all) but I will return to them later.
The message I hope to share over and above all else is that when facing the dark fears of life (death, disease, disability) hold to hope, hold to strength, and never give up your resolve. I've been walking around with a tumour in my brain for no one knows how long now, and the last three years I've been walking away from surgery, a brush with death, and a constant sense of the unknown. In that time I've learned many new things, worked my ass off across this country, earned my independence, and then in the end, returned to home.
And that's where this story shall begin: the realization of the need to return to medical care, to begin to confront this challenge more head on.
February. Near the end, I had a seizure. First time in ages for a daytime seizure, a minor one, but nonetheless a scary experience. An error in dosage? Then another. Another, another. They returned to me, I upped the dosage, they left, then they returned again. Something had changed.
April. I've finally been forced to stop working and admit to myself: this drug isn't going to conquer this. It's not the result of a mistake, things are changing. I'm late for my MRI, I'm no longer epileptically stable, and it's time to walk back out onto that battlefield. On my way home I go...
The journey wasn't so bad, it was stressful flying my best friend and strongest ally in the cargo hold (Gotta love that Winston), but we both got home safe and sound. What came next though, was not so nice. We'd been thinking for years, telling ourselves, it wasn't growing. This MRI very solidly proved that wrong, and that it had been growing, slowly, all along. That combined with my epilepsy becoming unstable meant it was time for the next step of treatment. Now came the question: Chemotherapy or Radiation? Do I want to eat complex fancy poison for a year, or get my brain precisely nuked? Choosing the chemo was surprisingly easy. The radiation treatment will, if I have to use it, destroy my speech center inevitably. So, if it comes to that point I will be truly disabled, unable to communicate, and I'm far more scare of disability than death or pain... So chemo began.
That was 6 months ago. In that time I learned a lot about chemo, cancer, and medicine. First, and foremost: CHEMO IS NOT AS SHITTY (ALWAYS) AS I EXPECTED! That is something I want to say and then prove, a message for anyone else entering that battle. I think if I'd spoke to someone whose experience of chemo compared with mine prior to beginning it, I would have felt a lot better from the beginning, much less fear and anxiety, and I actually would have cared for myself better by staying more active, more focused, and more positive. It tooks months of pushing against limits, finding a balance, and more than anything, finding that pulling back and disengaging from the parts of life I find meaningful, is far worse for my health than the physical toll of engaging an effort. In these past 5 months I have caught 75+ sharks, cut down a few cords of wood, broken in a quad, snorkelled and collected a meal of scallops, bought a house and 22 acres, surveyed it and begun developing it, and am now going further and further with this all the time.
That is the main story I'm going to tell. That will be the real point of this blog. Sharing the experience as it was, and as it is now. I will try to combine writing about my days, my new home, my life and my experience, sharing pictures and videos as much as I can, with retrospective stories about how I came here, what it's been like, and what it's meant to me.
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