Thursday, September 8, 2011

medical marijuana

I’ve spent my fair share of the last couple years researching and experimenting with cannabis, which has been more of a struggle than it sounds. I’ve had butter, milk, oil, peanut butter, various baked products and candies, and yes, I’ve inhaled. I wasn’t ready to write about it earlier, as I felt it was an enormous responsibility and wanted to be sure of my results. So far, I’ve only given help and advice on an individual, case-by-case basis, but the time is way overdue to put it out there, as it were.



I thought advances on the MMJ front would happen sooner in Europe than in the States, but after a recent trip to the Wild West, that appears to be otherwise. After talking with several dispensary workers and owners in California and Colorado in their various degrees of sobriety and ‘back pain’, I hit gold and stumbled upon Full Spectrum Labs while in Denver and discussed my own findings with a scientist there. He concurred.



The marijuana plant has multiple cannabinoids that have proven medicinal value against many diseases. Against cancer, the most important are CBG, CBD, CBC as well as THC.


The most effective delivery method is ingestion. My preferred method is milk, as it’s natural, easy to make, practically free and makes use of the entire plant.



Smoking marijuana is the most common method of administration and the least medically effective. Although it will alleviate many of the side effects associated with chemotherapy, it will have very little ‘direct’ impact on your cancer.



I tried hemp oil for a bit (which is expensive to make and potentially dangerous), but only after I was already well on the mend from the milk. It did, however, work very well topically when I applied it to what I believe was the primary tumor. I had another folk concoction at one point that I had analyzed and it also contained cannabinoids.



I had the milk while on chemo, pretty much every day, often with my morning coffee. Not only did it make the worst bearable, but I think it also saved me from many of the literally crippling side effects associated with Carmustine (BCNU) and Cisplatin, two of my chemo drugs, by acting as a neuroprotectant. I also sincerely believe that cannabis helped immensely to cure my cancer. I list it in its rightful place as #5 in my previous top ten, but as the first tangible and active (as opposed to giving something up) ingredient of my recovery, because that’s what it was.



That said, here’s my recipe for ‘pot milk’:



1) You need: a blender, a rice cooker (or crockpot), a French press (or less effective straining mechanism), a funnel and re-sealable glass container(s) - I use the equivalent of mason-jar-like Grolsch beer bottles or this beauty:



Whole milk: use only whole (higher-fat animal) milk. 3.5% or better to open. You can also add half-and-half or a little cream (if you want it whipped, but this may cause it to clot later) and optional (but pretty necessary) flavoring(s) like: Kahlua, vanilla or almond extract (that I use) or cinnamon, nutmeg, etc. NO SUGAR!



Get weed 'waste' from a grower. This can be leaves, schwag, trimmings, loose bud, hermaphrodite bud, or actual bud if you can afford it, etc. Remove the larger stems;



2) Fill (pack) the blender with the aforementioned to about 1/3 to 1/2 full (I use about three 'cups');



3) Add the milk - in the case of my blender, a liter.



4) Add Kahlua, vanilla, almond extract or some other flavoring to taste (steps 3 and 4 can be reversed);



5) Blend very well, working your way up the settings;



6) Pour mixture into a crockpot or, much better yet, a rice cooker. If using a crockpot, you should slow cook it for well over two hours (other recipes say up to 6 hours – which I find excessive). If using a rice cooker, you can alternate between settings and get out of there in about 45 minutes. Never actually boil the milk, but get close at first (other recipes say to keep it at 140°F - which seems about right), while stirring. Then you can leave it on the ‘warm’ setting for two hours. Stir fairly often. I give it a last ‘cook’ blast at the very end, so it strains better;



7) Pour the cooked mixture into a French press coffee maker (Bodum). Press;



8) Funnel into a glass receptacle, through yet another finer strainer (if you don’t want it gritty). Keep pressing, stirring up and pouring until you get it all;



9) Test potency very carefully. Try a teaspoon and give it at least an hour to have any effect. Then move up to a tablespoon, if you don’t feel anything.



Once you start ingesting marijuana products, your tolerance goes through the roof after a week. This is a huge plus, as you will want to increase your intake over time. The potency will vary from batch to batch and is very hard to regulate or standardize. So, test each batch with care.



What to expect? The effects of pot milk vary depending on potency, individual constitution, body weight and established tolerance. After a lengthy abstinence, I tried it again (a shot’s worth) in order to attempt to experience it as a first-time patient, before recommending it to someone without a known tolerance. It was, to put it mildly, very strong. Your mental state is very important, as the milk can magnify emotions, while making you very introspective. It can cause extreme paranoia in some, if you don’t know what to expect, so use carefully, with sound mind and judgment.



The effects kick in anytime after 30 minutes and can last from four to eight hours - the peak not coming until around two hours into it. I now take it only at night and use only indica (or mixed) strains, which are more relaxing than sativas. It’s an all body high, very deep, and very relaxing, if you let it be.



It’s best to have knowledge and even better yet to have some control over the strain that you’re using. Strains high in the particular cannabinoids mentioned above are obviously best. If you live in Colorado, Full Spectrum Labs will test your strain for $35, if you’re an MMJ cardholder. That said, beggars can’t be choosers and you may have to use what’s available from your nearest (or friendliest) grower. I have never paid for ‘waste’: it’s called that for a reason. My cost is the milk and the odd bottle of vanilla or Kahlua. The price tag beats the hell out of chemotherapy and is infinitely more pleasant.



The MMJ debate seems to be coming to a head, at once becoming more widely accepted, while at the same time strangely, much more polarized, contradictory, confused and confusing. I’ll get into some of the complicated legal issues in my next post. Until then, enjoy this excellent documentary:






Got milk?

Sunday, July 17, 2011

my recovery

Here's my own personal 'top 10 list' of what I believe led to my eventual recovery. I'll write more on each topic in upcoming posts, but here's a summary. Remember that all cancers, cases and 'cures' are entirely unique to each individual. This was me:
 
1. attitude / approach - I wasn't in denial, but I wasn't going to die. I was and am pretty stubborn. My state of shock actually helped give me some detachment. I studied as much as I could and asked a lot of questions, taking (often very) disappointing answers with a grain of salt, a wince and a whatever. I trusted my doctors, but was aware of their limitations, as luckily most of them were too and I respected that honesty. I kept a very open mind (as to options) while being fairly skeptical – of the good and the bad news. I maintained a sense of humor and tried to spread as much cheer as I could. My late-night non-alcoholic beer parties are still the talk of the hospital. 

There is absolutely nothing to be gained from a negative and hopeless attitude – in fact, there’s everything to lose. Nothing has more impact on your life (or death) than your approach to it, your attitude, your worldview, the way you express and internalize it – your two-way filter. If you think you’re going to die, you probably will. If you have to constantly convince others that you’re going to live, you’ll eventually convince yourself. One rises surprisingly to new challenges, you find the strength – there isn’t much choice. That said, a positive attitude can’t be forced, acted or pretended, it has to be real. You need to have a brave mind and not just a brave face.

2. the love and support of friends and family - was really overwhelming and I spent as much of my time consoling them as the other way around. It really helps, if you let it. People came out of the woodwork in Prague, from all over the world and from my distant past. I was showered with ‘good vibes’, ‘positive energy’ and the odd prayer. Even my cat took more interest in me and literally wouldn’t leave my shoulder whenever I was home – a ‘laying on of the paws’, as it were. I had many more and much better friends than I’d ever imagined – it was a real revelation and a huge and much needed boost. Very simply, I couldn’t have made it without their support – I wouldn’t have had the ‘attitude’ that I did without it. I am eternally grateful to the point of shame. I love you all and will never forget what you did for me.

3. reduction of phenylalanine (and tyrosine) in my diet - it's an essential amino acid (a building block of protein) and so not entirely unavoidable. Run from the artificial sweetener, Aspartame (NutraSweet, Equal, etc.) - it's cancer food, especially for any pre-existing melanoma. I cut down on meats, eggs and soy (not that I ever ate much soy), but had also been taking supplements of that crap for years – even after the operation. Finding out it promotes tumor metastasis, was a bit of a shocker.

4. Elimination of all avoidable sugar except the odd (and often even) beer, although I drank nealko (non-alcoholic) for several months. Sugar is cancer fuel (as it is for other cells). As radioactive glucose is used in PET scans to detect cancer, it should come as no surprise that cancer ‘likes’ sugar and lots of it. Starving tumors (and yourself) of sugars and carbohydrates reduces their rate of growth.
 
5. medical marijuana - a friend first made ‘pot milk’ for me when I was trying to quit smoking (anything) in order to get through chemo. In retrospect, I can’t see how anyone can go through chemotherapy without some form of cannabis - except maybe by taking multiple pharmaceuticals (with mixed and limited results) for each side effect (nausea, appetite loss, insomnia, pain, anxiety and depression, etc.) that further stress the liver. It’s no secret that smoking cannabis alleviates many of the unpleasant side effects of chemo, but ingesting it is by far a better option. I’ll expand and expound on this subject in the next post, but even the National Cancer Institute of all institutes apparently now agrees with me: 

"The potential benefits of medicinal Cannabis for people living with cancer include antiemetic effects, appetite stimulation, pain relief, and improved sleep." and:

"Cannabinoids may cause antitumor effects by various mechanisms, including induction of cell death, inhibition of cell growth, and inhibition of tumor angiogenesis and metastasis. Cannabinoids appear to kill tumor cells but do not affect their nontransformed counterparts and may even protect them from cell death. These compounds have been shown to induce apoptosis in glioma cells in culture and induce regression of glioma tumors in mice and rats. Cannabinoids protect normal glial cells of astroglial and oligodendroglial lineages from apoptosis mediated by the CB1 receptor."

6. Many excellent doctors and nurses – the care I received in Prague was of the highest standard most of the time. Doctors were very blunt and for that I was grateful. The nurses were kind, but firm and often hilarious. I donated all of my flowers to the nurses' station, which endeared me to them - it's a tough job and it's nice to feel appreciated. I had little trouble organizing appointments or obtaining medical records – often on the very day the tests were taken. 
7. Herbs and supplements – I think I pretty much tried them all, but what I believe actually helped most were: curcumin (a powerful antioxidant I got from Ageless Cures), a good multi-vitamin (‘Mega Men’ from GNC and others), additional 'Ester C' 1000mg / day, and 'ImuFit' (beta-glucan).

Additionally, but somewhat sporadically, I took: extra zinc, kelp (for radiation exposure), milk thistle (silymarin – to prevent liver damage from chemo and from the stress of all the other supplements), shark cartilage (prevents angiogenesis in tumors), Omega 3 (fish oil), Vitamin E, Beta Carotene, Co Q-10, selenium, N-acetyl L-cysteine (NAC), as well as ginko biloba on occasion.

Antioxidants run counter to most chemotherapy regimens, as chemo works by actually creating free radicals and interfering with cell DNA / RNA. Antioxidants just pick them back up. Good thing I didn't have much faith in my chemo. Curcumin, however, can inhibit platelet production, so if your platelets fall well below normal (like mine did), hold off on it for a while.

8. Other dietary / lifestyle changes: I’ve been long-time lover of smoked and grilled meats, but gave them up in favor of salads (Homolka hospital actually has a great salad bar!). I ate lots of fruit and made crazy combo smoothies on a daily basis. I got rid of sugars and most carbs as mentioned above, eliminated fats and most dairy (milk products produce mucus - an environment in which cancer thrives). I started exercising to reverse the atrophy and regain the strength I'd lost to the extended and very sedentary hospital stay and the physical ravages of chemo. Exercise is also a great mood booster, releasing natural endorphins.

9. Chinese medicine – that’s right, I went whole hog, as it were. Dr.? Wang was very confident and comforting with his thick wizened accent in Czech, the cheesy Chinese elevator music and the wacky tree barks, roots and vetches I had to boil for hours and then drink. Lying in his office with acupuncture needles all over my face and head, while listening to the chuzak (Chinese muzak) was pretty much the only time I was able to relax and not think about cancer – I usually meditated and often slept for all of 20 minutes, which was a major accomplishment for me at the time.
 
10. Kombucha tea – My friend Milan made this for me from scratch. I think I drank about thirty liters of it, averaging three glasses a day. It tastes pretty foul, but you get used to it.
 
I'm happy to answer any questions regarding the above (or anything else for that matter!). Please feel free (and encouraged!) to question or comment. If you or someone you love has cancer, the sheer amount of (often conflicting) information can be too much to handle. Take it slowly and calmly, do your own research, examine your options and ask a lot of questions. Although easier said than done, the best thing you can do is to lower your stress level, which seriously 'stresses' your immune system. A very tall order (for someone with cancer), but a necessary step toward better health for anyone. Severe stress (although not always completely unavoidable) will inhibit your ability to achieve the 'attitude' necessary to overcome your cancer. If you can redirect and use that stress as a positive, motivating and productive force, you stand a much better chance of recovery.

Saturday, July 9, 2011

chemotherapy

Reading this blog, one might get the impression that chemotherapy was responsible for my cure. It wasn’t and it almost killed me. If anything, I got better despite the chemo and not because of it. Still, I want to make it clear that when I write about cancer, I’m writing strictly about my own Cancer and my own experience. (the terms chemotherapy, cytotoxic (cell-killing) chemotherapy, and platinum-based chemotherapy are relatively interchangeable in this article, I am not referring to immunotherapy or more targeted oncological techniques).
the cytotoxicity symbol is haunting
Everyone has cancer at some point in their lives and everyone’s cancer is entirely individual. As I’ve written, I believe that cancer is an important part of the immune system: insulating vital organs from damage due to infection or repeated injury, as in skin (eg. from the sun) and lung cancer (eg. from smoking) or, in Lance Armstrong’s case, testicular cancer (from riding a bike for most of his life). What Lance fails to mention in It’s Not About the Bike, is the fact that IT’S ALL ABOUT THE BIKE. He very likely got his cancer from riding a bike. It doesn’t take a rocket scientist or an oncologist to make that connection – repeated bike-to-ball injury. 

Lance goes on to credit platinum-based chemotherapy (Cisplatin – which I also had) for saving his life, which it probably did. Testicular cancer patients respond very well to Cisplatin (see below). The track record for stage IV melanoma using current cytotoxic chemotherapies (and Cisplatin isn’t even approved for melanoma treatment in the US) is, however, very poor and even successive modifications to my own protocol have shown little to no improvement (link to a review of my combined treatment) and are not recommended, but very often prescribed. 

He even credits chemo for winning the Tour de France, which I can actually understand – having lost a lot of weight and gained a lot of muscle since the end of my own chemo hell. I may ride it yet, but chemo is not a fitness routine I could ever recommend to anyone.

This from the good folks over at Wikipedia:
“Chemotherapy is highly effective in some cancers, useless in others, and unnecessary in still others. Taking all forms of cancer together, people who receive chemotherapy increase their odds of living five years after diagnosis by about two percentage points (e.g., from about 61% being alive after five years to about 63% of them being alive after five years).  However, this overall rate obscures the wide variation. Cytotoxic chemotherapy produces much larger gains for some forms of cancer, including testicular cancer (about 40% of the men who live five years after diagnosis are alive because of chemotherapy), lymphomas (about 13%), and cervical cancer (12%). By contrast, chemotherapy is essentially useless in other cancers, including prostate cancer, melanoma of the skin, multiple myeloma, bladder cancer, kidney cancer, and pancreatic cancer: people who receive chemotherapy for these conditions are just as likely to die within five years as people who do not. Chemotherapy only slightly improves survival for some of the most common forms of cancer, including breast cancers (1.5%) and lung cancers (1.5%).”

This from the NIH regarding its effectiveness: "The overall contribution of curative and adjuvant cytotoxic chemotherapy to 5-year survival in adults was estimated to be 2.3% in Australia and 2.1% in the USA. To justify the continued funding and availability of drugs used in cytotoxic chemotherapy, a rigorous evaluation of the cost-effectiveness and impact on quality of life is urgently required."

Cytotoxic chemotherapy is just that, it kills cells - the healthy along with the ostensibly ‘sick’. Different cancers have different responses to chemotherapy and it generally works best on the faster-growing varieties, as they are ‘hungrier’ and take in more of the poison. But other rapidly-dividing cells, like red and white blood cells, platelets, the entire digestive tract, and hair are also early victims. This is why chemo patients throw up a lot, lose their hair and have weakened immune systems.

This is the only empirical evidence of my response to chemo:

During treatment, which consisted of five three-day cycles over four months, using Cisplatin, Dacarbazine (DTIC) and Carmustine (BCNU), I felt sick, tired, weak, nauseous, was puking constantly, had arms full of holes, a completely wrecked immune system, no platelets, was covered in bruises, and generally very miserable – an athlete’s foot infection could have killed me at this point.

Following treatment: severe muscle atrophy, busted and completely calcified gall bladder, shingles, enlarged prostate, peripheral neuropathy and allegedly progressive disease (all since cured). Another session probably would have resulted in permanent damage or simply killed me - the cancer and not the chemo taking the blame as it always does in these cases. As it is, I am considered a very rare melanoma chemo success story (duly reflected in the statistics); the chemo taking the credit for my recovery.

Chemotherapy is barbaric and amounts to torture. We’ll look back on it someday with the same disgust and disbelief as we regard trepanning and witch burning. The history of this highly-carcinogenic and counter-intuitive therapy is also not surprising if you’ve been through it - this (very plausible, but unsubstantiated story) also from Wikipedia:

Mustard gas was used as a chemical warfare agent during World War I and was studied further during World War II. During a military operation in World War II, following a German air raid on the Italian harbour of Bari, a group of people were accidentally exposed to mustard gas (there stockpiled by the allied forces) and were later found to have very low white blood cell counts. It was reasoned that an agent that damaged the rapidly growing white blood cells might have a similar effect on cancer. Therefore, in the 1940s, several patients with advanced lymphomas (cancers of certain white blood cells) were given the drug by vein, rather than by breathing the irritating gas.”

Mustard gas was prohibited under the Geneva Convention (since 1925, mind you), yet it is somehow legal and desirable to give it to people intravenously who are dying anyway. Considering all of the advances in medicine since the ‘40s, cytotoxic chemotherapy remains largely unchanged. Carmustine (BCNU) – by far the worst of my chemo drugs is derived from mustard gas. The first chemotherapies for melanoma used phenylalanine mustard – the connection with phenylalanine somehow known, but not carried over into a product label warning for phenylalanine or NutraSweet, as reported earlier.

I read somewhere that 96% of cancer patients don’t actually die from cancer. I don’t know if that’s true, but I wouldn’t be surprised. I also read that 80% of oncologists would not choose platinum-based chemotherapy if they themselves had cancer – again, no real surprise there. The 'response' statistics from clinical trials and their eventual highly-paid rubber-stamped regimens are misleading and fraught with inaccuracy, misdirection and misinformation. 'Response' to a therapy is in no way associated with 'survival'. Patients who are termed 'unevaluable' are often those who died during the treatment and are removed from the statistics - or worse, counted as having 'responded' to it. If you had enough Carmustine, you could destroy every cell in your brain (they've actually done this with rats) including the cancer. You would have 'responded' to the treatment, but at the obvious cost of your life. Article here.

When making the decision of whether to go the chemo route or not, it is important to educate yourself as much as possible. Research the drugs to be used, understand the potential side effects (temporary and permanent) and the survival statistics - but take those statistics with some skepticism. Weigh carefully the risks and benefits and realize that the doctors may be offering you chemo simply because they have nothing else in their arsenal. Or for worse reasons. Look for alternatives – they exist and I’ll list what I believe helped me in the next post. Your health is your survival and the choices are always yours.

The only therapy that will ever work for you is the one(s) that you actually believe in. Lance is alive and I’m alive – the difference is that he’s alive because of chemo and I’m alive despite (or even to spite) it. Either way, I’m happy for both of us.

Tuesday, April 12, 2011

living in the moment

A lesson that I’ve learned and relearned and still have to learn at least once a day is the importance of ‘living in the moment’. There really is no other time than the present: than the exact moment that I’m writing this and you’re doing something else (now already past), until you read it and I’m doing something else (in the future, but just now the present and right now... past).
The past is a pre-distorted and ever-fading memory; the future is always pure speculation - loosely based on past experiences - but only ever created (made ‘present’) as a direct ‘outcome’ of present conditions and, as such, unproven and unclear by its very nature (ie. complete lack of one).
Whereas the past is technically ‘responsible’ for the present, it has no direct impact whatsoever on the future. That is the job of the present, of the moment, and of the moments to immediately follow as they themselves become present.

There is no other time than the present - than the exact moment, than now. You can’t live in any reflected upon or fantasy past or in a speculative future. They don’t or won’t or didn’t or wouldn’t exist or have existed. They are lies. Shoulda woulda coulda is the one thing that will absolutely never happen. Your future will never match your expectation. It shouldn’t. You can’t know what you don’t know. Everyone would be a fireman.  

'What does all this new agey pablem have to do with cancer?' you ask.
It makes referencing the future with any confidence very deceptive (for anyone). 'You have six months to live,’ ‘this is your last chance,’ ‘you start on Monday,’ and ‘I’ll be there in an hour,’ sound pretty convincing, but are really hypothetical. None of those statements is ‘true’: it’s arbitrary guesswork and set not in stone, but in the deluded (and fickle) imagination of the speaker who thinks they ‘know’ what they’re talking about.

So, instead of 'living each day as if it were your last' - which I would find horribly frightening (what terrible advice if you think about it) - just try to make each day 'count'. Live in and experience 'the moment' fully. Don't regret or dwell on the past or worry about the future - the only time you'll be able to do anything about either will always be now - in the moment.
Ironically, I wrote the above a few months ago – good to see that it’s still valid ;-) I had 'planned' to write something about ‘fear’, which I’ve been happily obsessed with lately, but stumbled upon this old chestnut instead. Here’s a fairly recent picture of Manders living in the moment: