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/TemozolomideThat'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.