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:

http://marijuanamovie.org/full-documentary/

Got milk?

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.

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.

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:

skipped my CT

I had a choice to make last Wednesday morning:

Get up at an ungodly early hour (unless you’re still out), have nothing to eat or drink (thus precluding the previous parenthetical), spend almost an hour on public transport (and then an hour back, unless something goes horribly wrong and you have to stay at the hospital – wouldn’t be the first time) to wait another hour in a room full of sick people (which could describe half the country right now), while drinking a liter of god knows what contrast solution… all just to get zapped with carcinogenic ionizing radiation over about 20 – 30 minutes in a tube (or longer – meaning twice, meaning up to six exams - if you or they screw it up – which also wouldn’t be the first time):

An abdominal CT delivers 2000 times more ionizing radiation than a dental X-ray. What’s wrong with that you ask? The New England Journal of Medicine says:

X-rays can also ionize DNA directly. Most radiation-induced damage is rapidly repaired by various systems within the cell, but DNA double-strand breaks are less easily repaired, and occasional misrepair can lead to induction of point mutations, chromosomal translocations, and gene fusions, all of which are linked to the induction of cancer.
  

They go on to say:

There was a significant increase in the overall risk of cancer in the subgroup of atomic-bomb survivors who received low doses of radiation, ranging from 5 to 150 mSv; the mean dose in this subgroup was about 40 mSv, which approximates the relevant organ dose from a typical CT study involving two or three scans in an adult.
  

So, I’ve been hit with countless atomic bombs already (including PET scans – which are worse and radiation therapy – which is much, much worse), when they were ostensibly necessary. What’s another gonna do to me? Or:

The chance to get paid €1000 to fly to Turkey for the weekend (-12º C vs. +22º C) with all expenses paid to act like a sleeping businessman in a Turkish Airlines commercial. Hmmm. Tough choice (or just look at the subject). So:
  

I got up at the ungodly hour of 6:30 AM, made some coffee (and hence my choice), opened the sealed hospital envelope looking for the number of the CT department. The report read: ‘Following complete remission…’ and was to involve three CT scans, but no phone number. I sent my oncologist an SMS and cancelled.
  

I went to the casting. I didn’t get it. Maybe it was my post-op passport picture of a skinhead with a black eye and stitches on his head - I have a lot of trouble with this and get to talk about my brain tumor at every border. Maybe my Turkish isn’t what it used to be. Maybe it was because I gave away all my ties when I thought I was dying and didn’t look much like a businessman. Maybe I just slouch too much when I pretend to be sleeping. Whatever the reason, it was still the right decision:
  

No one knows better than you how YOU feel. That’s why the doctor asks you, “How do you feel?’ or “Does this hurt?” etc. Just remember that. I feel better now than I have in over fifteen years and I’d like to keep it that way.

That said, diagnostic testing is important, but can be overdone and results misinterpreted (that story appears elsewhere). I neither want nor need another expensive (that I don’t even pay for) radioactive exam every six months, especially when so many (actually in need of them) don’t have access to this technology. Blood tests for cancer markers are simple, cheaper, less invasive, and not carcinogenic, but also not entirely accurate (depending on the type of cancer, its marker and individual physiology). Still, it seems to me a better interim alternative to ionizing radiation - and the possibility of new (unrelated) cancer.
  

My oncologist, bless her, called me Monday morning; she didn’t mind that I’d cancelled, she understood my reasons, and we rescheduled for the end of February. I think I can take it: as my radiation biologist says, “After radiotherapy, you could walk into a reactor without much added cancer risk.” She also hooked me up with an expat cancer survivor group. We’re to meet next Monday and I’m looking forward to it. I’ve got a lot to say.

“You have cancer.”

Words so terrible, you stop listening. In my case, I never got to hear them. I reviewed the MRI together with my neurologist in an empty hospital. She screamed and grabbed my arm. A really bad brain tumor looks like a really bad brain tumor. No medical degree necessary:

My cancer was obvious and it didn’t happen when I saw it, and yours didn’t start the day you were ‘diagnosed’. I’d had cancer for months (according to the doctors - actually years as far as I am certain), and so did you, when the doctor said those words. You don’t 'catch' cancer, you get caught with it. The dramatic (my own obvious tumor notwithstanding) ‘advancements’ - most of which are themselves highly carcinogenic - in diagnostic testing have far outpaced any progress toward better treatment, let alone cure.

Almost all of us have cancer of some sort at some time in our lives. My own (but I don’t think original) theory is that cancer is a function of the immune system that has simply run amok. Cancer develops as a result of stress, repeated injury and irritation, inflammation or infection. The fast-growing (and more prone to mutation) 'cancer' cells insulate the affected / infected area from the rest of the body until the immune system can launch a proper response. At which time, they happily kill themselves, congratulating themselves on a job well done.

[this aside from a radiation biologist, I’m in contact with who has studied cancer for over 20 years - sorry, but ‘people’ wanted references, or if you know how to use a search engine, which I’m assuming you do, you can find them yourself], ahem: "That is right. I would say even that everyone has many (maybe thousands of) dormant mutated cells capable of transformation. In addition, by advanced age, most people have several to dozens of small (2-3 mm) in situ (i.e. non-metastatic) benign tumors. The initial cancer event is always a mutation (or series of mutations) in a single cell (initiation). Then its development (promotion) depends on the tissue microenvironment, various protective systems and yes, immunity and inflammation. Infection (especially viral infections) can initiate cancer too."

If the immune system does not launch a response or is otherwise occupied, stressed or compromised or the various causes continue or are repeated, further mutations (DNA-damage) can occur in the ‘cancer’ cells, turning off the p53 gene for apoptosis – the cell suicide mechanism - when the mission’s accomplished:

If the immune system does not then take care of these cancerous cells itself, which it has a hard time recognizing, as they were previously on the same side, they not only continue to live, but multiply. That’s why cancer isn’t contagious: as it would be immediately recognized as foreign by a different immune system and promptly dispatched with. These endogenous rogue cells then develop, grow, divide and multiply (often very quickly) into enough Cancer (with the big C) to be revealed in an expensive test.

The words are terrible to hear, but they aren’t what gave you cancer. If the day you hear them changes your life, you’re ahead of the game, not behind. You realize what’s really important to you, who’s important to you; you become closer to yourself as well as to others. You reflect and gain clarity, when you’re not flipping out.

Cancer is an opportunity to make peace with yourself: to deal with your regrets and achievements objectively and with fresh perspective. It’s a chance to really appreciate the life you’ve had and the life you have left. You get to reprioritize and try to make sense of it all.

Excuse me, but I have a cat to feed:

...and if you have Cancer and found this post technically challenging or spiritually difficult, you've got a lot of work ahead of you. Take a deep breath and get started.

Synopsize ME™

Facing death (and giving it a bloody nose) is traumatic and life changing. People know that, they expect it. They expect you to be outwardly and obviously changed, to impart great wisdom from the beyond or be an insane, drooling vegetable. They expect you to win the Tour de France™ or spend the rest of your life in a home for those of similar incontinence. They expect you to be really nice or really bitter. They expect you to become a Buddhist or at least quit smoking. It’s human nature to expect a return on your emotional investment, some resolution or just plain punctuation. I did.

But facing death is actually pretty exhausting. The return on investment comes with time, rest and reflection, which I’ve tried to enjoy to the fullest this past year and change:

I started teamBEAT!!!™ with Jane and Damien in the very wake of Michael Jackson's embalming - a Soviet synth-pop revival band that toured Germany three times;

Launched two perfume lines for Avril Lavigne, aimed at the consumerist, brand-conscious, yet somehow 'rebellious teen' market... kids today;

Successfully embarrassed one of the richest men in the world (name withheld);

Crashed a honeymoon in Thailand to learn something I already knew about myself:

Starred in a Swedish Toyota commercial; 

Had the usual twelve-day festival, mikeFEST!!!™ - now in its 28^th year and with ever-better posters:

Got back and better than ever into shape after prolonged illness and atrophy.

And I watched as my two remaining tumors (17mm & 13mm), out of an original total of seven (after the brain baseball), shrank to just one that was ‘only marginally enlarged’ at 12mm (October 2009). That last lymph node is now (as of May this year) down to a normal 10mm with absolutely no sign of cancer.

And I’ve changed in very dramatic, but outwardly subtle ways that were never black and white and rarely apparent even to those who think they know me well. It is a life-changing experience, but it’s my life to change and figure out which babies to throw out with the bathwater. Real change takes time. I’m just happy that I have a lot more of it now.

three years

I went to see my oncologist yesterday for the second time this year for a wide smile, friendly chat and a checkup. Ironically, it was the third anniversary of when I started to lose it:

Three years ago yesterday, I’d been up for three nights straight putting together a photo exhibition (my first) in my courtyard and had stopped taking ibuprofen, taken to smoking cloves and wanting to be an artist, damn it. Here’s one of my favorites from the show:

Around two in the morning after my vernissage, I was at some club and started dropping beers. Things then went slowly from bad to worse until by Christmas, I was seeing double and could barely walk. The rest, as they say, is history: accessible from the archive to your right ->

Yesterday, my oncologist and I discussed her recent trip to Egypt, my summer and the book I was reading. She couldn’t stop smiling, as she’s not used to happy endings to stage IV melanoma with brain and lung metastasis. Being an oncologist must be the saddest job in the world. She was going to order a PET/CT for December, so I told her the following story from the last one in May:

me: Hey Doctor, it says here that one of these exams is equivalent to four years of ambient radiation. This is my eighth, that’s thirty-two years of radiation!

Radiologist: That’s right.

me: Isn’t that unhealthy?

Radiologist: Well, yes, but, let’s see… [looks at file] Wait a minute. You had radiation! That’s thousands of years of radiation!

Oh how we laughed. And so did my oncologist, but we negotiated down to an old-fashioned (less carcinogenic) CT instead, as she agreed that I needed more radiation like a hole in the head – which they also gave me. We left my next appointment until ‘sometime next spring’ and I asked her if she had many patients like me. “No, not like you,” she said and smiled anyway.

back in blog

Well, it’s been well over a year since I’ve posted anything. There were a lot of reasons why I stopped writing, but after more than a year and a half as a full-time cancer patient, mostly I just needed a vacation. I didn’t want to be ‘that guy’ anymore. I didn’t want people constantly asking me about my health, treating me differently or even deferently. Pity and praise, thoughts and prayers prefaced pleasantries and broke the ice, but not for me, not after a year and a half of it.

Cancer was a total mindfuck. I’d spent too long with too little choice over what I wanted, despite everyone doing what I wanted, which can actually be worse. So I declared myself cured (which I actually wasn’t – not completely like now), purposely burned the rest of my cancer cards and began to do what I wanted to do (which can also actually be worse).

I also felt that this blog had deteriorated into a bit of a travelogue, with little substance in terms of cancer advice and was hoping to correct that, but didn’t believe that I had the appropriate detachment, objectivity or even proof of my own cure to preach to others about a condition that I just happen to know a lot about from terrifying, first-hand experience. 

But I think I have that detachment now (or at least as much as I ever will) and survival guilt has seriously begun to ruin my party. People are dying while I rationalize and make excuses, and although I can’t possibly understand what each goes through in their own private hell, I do understand better than most and I think I can help. So instead of rambling on about my wacky misadventures, I feel I owe something to the memory of those that have died and to those just beginning the horrible waking nightmare that is cancer.

That said, I’ll write whatever I feel like, and if wacky misadventures can somehow inspire those who think that their life is over after being told that their life is over, then I’ve done some good - because it’s only just beginning.

the backstory intro...

First they thought it was pinched nerves, then “some hematological problem”, followed by “some tropical disease”, MS, a primary glioblastoma (baseball-size brain tumor) and now Stage IV metastatic malignant melanoma. This blog is the private, yet public, purely anecdotal evidence of my eventually successful 'battles' with cancer, bureaucracy, xenophobic finance people, as well as with my own personal demons. Enjoy!

cured?

There’s a nasty rumor floating around saying I’m cured of cancer. I know ‘cause I think I started it – and it’s even mostly sorta true. Read on.

I had the now far-too-familiar PET/CT scan the Monday before last just after Jon and Tommy arrived from Berlin to accompany me to the hospital where they could nap in upright comfort while I was injected (purposely) with radioactive glucose directly into my right hand (accidentally) bone (or whatever the technical term is for those bones in your hand) which spent the rest of the day as an arthritic useless claw:

I called my oncologist on Friday to get the results. “No cancer!” she said. I said, “What do you mean, ‘no cancer’?” She said, “No cancer! Come see me at the end of August.” I took that to mean no cancer. When picking up the radiology report yesterday though, I noticed it actually says, “We don’t find any masses of glucose hypermetabolization that would clearly indicate any neoplasm (tumor). Post-radiation fibrous changes in the left lung.” Or, in other words: no (detectable) cancer and sorry about the radiation.

But comparing the two scans, this and the one from March, there’s been little change – the two tumors in the lymph nodes remain the same: 13 and 17mm respectively, and the ‘mass in the lung is without obvious changes’. But none of the above appears to be viable or active in any way. Very good news, mind you, but pretty much the same (very good news) as last time, if you account for the wildly different writing styles of two wacky radiologists.

I also got my Czech visa finally registered last week – the end of a very long and tedious process. So that’s it! Got visa, European-wide health insurance and am cured of cancer. Thanks everybody! My exhibition was a blast and I had a great time with Jon and Tommy, when Jon wasn't yelling, that is:

I’ve spent the last week contemplating everything from my own navel to the universe, but mostly what the hell am I going to do now that I’ve got my health again, but no money. I guess I need to get a job of some sort. Any ideas would be most appreciated.

I’m escaping the craziness that is ‘museum night’ here in Prague in favor of a solstice party in Kolín, leaving in a few minutes. More soon and, as always, thank you for your support.

back in the USSA

Hey! I know it’s been awhile and I’ve had my share of flack for not posting, but mikeFEST!™ totally blew me out this year (and yes, I’ll get to that blog in a bit for the sake of my posterior and posterity) AND I’m in the States right now dealing with all that entrails.

I got into New York last Saturday and went to the consulate on Monday to pick up my visa. Instead of the familiar black dude working the reception, there was an even more familiar cookie-cut, ageless Czech bureaucratess manning the helm. I gave her the old dobrý den and hit the button ‘picking up visa’ to get my number. Just before my finger hit the button, she started yelling in Czech, “No! No! No! You have to sign in FIRST! AND you hit the wrong button!” She got on the phone and put the whole consulate on alert that I had made a mistake. “That was a MISTAKE! He made a mistake! Forget it! Ignore it! Mistake!” she barked and bawled. “Sorry,” I said and signed the register. She hit the button ‘picking up passport’ and gave me a new number.

But I wasn’t picking up a passport, I thought. She then had to deal with a delivery that she was making unnecessarily complicated for everyone involved and the consulate was about to close, but it was quite a few prosíms before I could get her attention and explain that although there was nothing I’d like better than to skip the whole visa thing and go straight for the citizenship, I should probably just get my visa and be on my way – which I did!

I flew up to Burlington on Thursday and took the ferry to Plattsburgh whence I’m writing now. We made a quick trip to Montréal on Friday and now mother and I are off in a couple of hours to visit the rest of the family in the Leatherstocking Region of the Mohawk River Valley, before I return to Middletown briefly, not to spawn, but to bowl with Sherman. I’m back in NYC on Wednesday and leave for Prague the following Monday, arriving Tuesday morning.

I’m exhibiting a series of abstract photos along with nine other photographers on Wednesday, June 3 at the Czech Inn on Francouzská from 18 – 20h. Hope to see you all there! Free glass of wine and snacks! Here’s the flyer:

The exhibit will hang for a month and everything will be priced to sell! I’ll have yet another PET/CT on Monday June 8 - the day after Tommy, Jon and Annette arrive in Prague for more mischief, mayhem and general disarray. Until then! Then.

clean scan

I got a wild hair up my ass to see the Butthole Surfers last week [pun absolutely intended] and got a ticket at the door. Great show! I don’t know why I wasn’t into these guys when I was younger. I had that brain MRI at the ungodly hospital hour of 5PM. They start very early and it was a Monday, so I expected a ghost town of a pair of living dead - which is what I got. So I certainly didn’t think the radiologist would want to stick around to burn me a CD, but when she offered, I couldn’t say no.

How does it look? I asked

Pretty much the same as last time. Do you want a CD?

Sure. It looks like last time? Really?

Yup. Give me five minutes.

She took her five minutes and gave me the CD. I got it home and sure enough, it looked like something I’d seen before. I had a huge hole in my head!! It took me about five minutes to realize that the exam was from February 2008, just after the operation. I went all the way back the next day (2hr rt) to get the correct exam:

Which was a lot more reassuring. The right side of my brain (left side of image) has taken over much of the left side (right side of image) where the tumor was. Damien says that should make me more creative. Or better at math. Dunno. And Jane’s in town with Johnny from Kiev for mikeFEST™. Here they are making the stencils for the official mikeFEST™ t-shirts, which Johnny thought was hilarious:

Kat got here from Paris yesterday and we exchanged our pesto salad for some chicken on the hill - the official kickoff for mikeFEST™ in Prague. Speaking of which, news of the more mundane variety will be reported at http://mikefest.blogspot.com/ for the next two weeks. Please make a note of it. Off to karaoke.

prague spring

Sorry it’s been so long, but the weather’s just been too damn nice to sit at home and write. Spring (now turned summer) came to Prague and was consummated with the requisite low-stakes poker game at the beer garden the Saturday before last:

Martha and I decided to see Obama together the following morning, so we’d have each other to blame for being late. After several pitfalls, misstarts and missteps, we got in by the skin of our teeth, just as HE was about to go on. Others were not so lucky:

Then they closed the security both in front and behind us, leaving about 50 trapped in a no man’s land between a string of metal detectors looking like high-tech exhibitionist port-a-potties ringing incessantly to the metal-laden crush of would-rather-not-be-no-man’s-landers, a 12th century castle wall, and the not-so-lucky above-pictured.

After about twenty minutes of pleading, they finally let us through to wild applause that wasn’t for us. It was a bit disorienting to see the American (and only) flag flying above Prague castle, but considering we didn’t actually have a government here then, I guess that made sense. It was our time, our moment indeed.

After the show, we met up with Greg and Mary at Luke’s Hotel Jozef for a fantastic and very healthful brunch! And then it was off in search of outdoor drinking while shouting ‘Obama’. From U Kotvy to O2, it was Election Day revisited in better weather. Mary was particularly patriotic... for a Canadian:

Obama must have said something to the Foreign Police while he was here, ‘cause on Monday, just before midnight, I got a call from the Czech consulate in New York telling me stop by and pick up my visa! I couldn’t believe it, so I checked the website that I check every day and sure enough, my number was the first in a series of hundreds. I guess she had a lot more calls to make. Weird.

So I’ll be back in New York on May 16th and will stay until the 1st of June. Orthodox mikeFEST!™ I guess. Plans are slowly coming together for mikeFEST!™ XXVII 2009 in Prague, kicking off exactly two weeks from today:

Travis came down from Berlin last Thursday and Casey and Matt were in town for Easter weekend:

And a pretty motley crüe gathered at Jirka’s out in Wet Dogs for Easter Sunday beach and barbecue:

I had been feeling sharp pain in my chest (left tit) for the past two weeks and was convinced that the fibrosis in my lung was worsening rapidly. It felt like I’d been shot with a shotgun. I’m now pretty sure that I just bruised my pec or cracked a rib while being dragged on the wrong side of the T-bar during that 20-minute long pull-up when skiing in the Alps. I’m much better now. Brain MRI on Monday... can’t wait ;-)