virtual visiting hours

medical marijuana

2011-09-08T20:39:00.000+02:00

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 4 and 5 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

2011-07-17T23:42:00.012+02:00

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

2011-07-09T13:29:00.013+02:00

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

2011-04-12T19:28:00.007+02:00

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

2010-12-09T16:38:00.019+01:00

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.”

2010-11-24T01:53:00.005+01:00

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™

2010-11-08T14:28:00.004+01:00

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

2010-10-14T14:46:00.003+02:00

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

2010-10-07T15:08:00.005+02:00

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...

2009-06-21T00:34:00.003+02:00

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?

2009-06-20T17:09:00.006+02:00

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

2009-05-25T06:48:00.008+02:00

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

2009-05-02T18:11:00.004+02:00

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

2009-04-16T16:23:00.021+02:00

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 ;-)

schladming!

2009-04-01T23:56:00.012+02:00

Hey! I’m not going to write much because you probably wouldn’t believe me, seeing how it’s April Fool’s and all! Last week, Damien and I are on the 22 tram from Tesco to Karlák and I have him buzz my phone. I answer in Czech and say (rather loudly, even for me), “I’m in the mountains! I can’t talk! I’m in the mountains! Bad signal! I won’t be back in Prague until Monday afternoon... at the earliest... depending on traffic. I’m in the mountains!”

The looks! The looks (and smell and feel) of pure hate I got from my fellow tram passengers! Seriously, try it. Try baldface lying in public in front of a large group of strangers who aren’t supposed to be listening to you. It’s amazing. I have never felt so terrible. Really a perverse rush. I finally had to explain to the entire tram that it was a ‘social experiment’ – I felt that bad. I couldn’t let them think that anyone could be that evil. I’m sitting this Fool’s Day out – I’ve had my fun already.

In the end, I did go to the mountains, the Alps of all mountains, for the weekend:

with Chris, Greg, Jack, Johnny and Pražák:

and kinda overdid it the first day. Given all my recent power dancing, I thought skiing would be a breeze. It wasn’t; and my legs completely gave out after a good eight hours. I still had a great time despite the occasional tangle (tango?) with the T-bar – long story short: I got dragged rather than 'lifted':

I actually skied a lot better when I was 14, much too much chagrin. But skiing is more about looking good than feeling good and no one looked more stylish than me with my glasses fashionably squashed into my (Greg’s) goggles:

And the nightlife was almost as demanding as the slopes, but we made it back to Prague alive and mostly intact – just in time for spring. I hear the beer garden is open.

remission?

2009-03-13T13:31:00.005+01:00

Dr. Klener worked his magic last week over at Homolka and arranged a PET/CT scan (the fancy nuclear one) for me this past Tuesday. Here are some of the highlights:

All tumors are showing “significant regression”: having shrunk to just over half their former sizes when compared to the last PET/CT in October;

while exhibiting “only minimal glucose consumption” = very little metabolic activity “that would testify to the presence of a viable neoplasm”; but

the pulmonary fibrosis (from the radiation) is worse (and will get worse, before and if it ever gets better) - seen above in the left lung (on right) as that nasty looking star wars starburst pattern of laser blast;

my gall bladder is still ceramic (from the chemotherapy);

and my waistband is, yet again, too tight.

I’m quite pleased with the results, as people generally don’t (actually pretty much never) get better from what I have. I’m not out of the woods yet, but think I found a path. I’m shooting for the ‘all clear’ on my next PET/CT in June, at which point, I will very grudgingly go down as a (very rare) positive statistic promoting the conventional therapies (chemo and radiation) that are the direct cause of all my current health problems. Fingers crossed ;-)

I saw my oncologist yesterday who was thrilled to the point of speechlessness and I’ll try to see my Chinese doctor next week so he can take some of the credit as well. I’ve spent over a year researching and using various therapies and supplements to beat this thing and will expose, expand and expound on each in future posts. I didn’t have the luxury or liberty of any ‘controls’ in this experiment: as time was considered short, I tried a lot of things concurrently, some intensively and others only sporadically.

But I’ll leave you with this ‘very distracting’ picture I took on Wednesday and got yelled at for at GlenGarry Glen Ross. Certain actors, apparently, can be thrown off their game by a little autofocus lamp:

back at it

2009-03-02T21:38:00.013+01:00

What an exhausting trip. New York seems like a year ago, but here goes:

A life-long dream of mine had been to see the Harlem Globetrotters® do that thing they do live. Bombarded and teased with advertising throughout my childhood for upcoming performances just a few towns away, I’d always felt a little cheated, left out and behind for missing out.

I don’t feel that way anymore. Thanks to the Garden of Dreams™ people at MSG® (OK, Christine, really), that dream came true much to my personal disillusionment. Not that there was anything wrong with the Trotters, just the ‘garden’ itself was a little fallow:

Remembering with relish the spread for the rodeo, I had starved myself all day in anticipation. This was on pay for tray at the event:

‘Unless them onions is frizzled with gold bullion, or that pork pulled out of the automaker bailout, I ain’t shellin’ out 91 clams for a sammich,’ I chided myself. There was, however, free beer (a lot), of which we indulged (a lot), before somehow waking up in a Dominican restaurant on the Lower East Side covered in salsa.

The rest of my time in NY was parties, packing and saying goodbyes and then off to Berlin, where I had a day of running errands and deutsche domesticity with Travis (doing dishes):

With Travis off to London and me chomping a bit at the bit to return, I took the train back to Prague the following morning and Jiffy picked me up at the station with a couple of beers:

In my absence, my apartment had been redecorated in the minimalist off-white motif of a 19th century hospital ward - not much different from where I’d been a year ago, so I felt right at home at home, as it were. I also lost CNN and the crappy German teleshopping/soft porn channels in favor of the Czech flavors, while the Vietnamese store below my house is, not-so-sadly, not with us anymore. And my cat is having a second childhood – not that any of these things are correlated, necessarily.

Maintaining the momentum from my trip for a few nights, I hit the town and finally hit the wall the first weekend with a flu that left me delirious with fever and otherwise incapacitated until the following Thursday when I went out to Motol for blood tests at 7AM.

I decided to wait around for my oncologist (instead of for the scheduled Monday appointment), so I’d be able to go skiing in the Italian Alps the following (this) week - four months of traveling not having been enough. She gave me the twice over, couldn’t feel any tumors in the nodes, arranged for a CT on March 23rd and a brain MRI on April 20th and told me to call later for the blood results.

When I called later, she told me that my creatinine (a waste product of the muscles) was three times the norm (245μmol/l) and I needed to come back the following morning for more tests and a sonogram, as this represented severe kidney failure. I did some research and it didn’t look good, so I cancelled my trip to Italy, drank lots of water and went to see Monogram with Josh at U Vodarny where I had a lot of beer to kick my kidneys into gear.

I went in at 7 for the tests and then came back at 11:30 for the results and the sonogram. The tests were fine and the sonogram cancelled. I’d managed to lower my creatinine to 63μmol/l – the low end of normal – even without dialysis! She also pointed out that my ‘melanoma marker’, the S-100β protein, which I had no idea they’d been testing for had dropped to .071μg/l from .232μg/l last March - now in the ‘normal’ range! Apparently, anything below .1μg/1 is good. Very good news if you can read between the Greek.

John and Amanda threw me a welcome back party of sorts somehow on Saturday night downstairs at Erra. Nicola, as usual, was in charge of the camera:

We then went over to the latest incarnation of ‘The Zone’ across from my old apartment, now called ‘Bendy’s' of all things:

Which was fun. I'm going to try to see my neurosurgeon tomorrow morning to arrange yet another exam, so I'm off. Sorry this post has been so long in coming (and in length), but it’s been a long few months. Thanks to everyone for their supportive comments on the last post and a special shout out to all those who hosted me on my American tour. I had a great time, but I’m glad to be back, for now at least ;-)

one year since surgery

2009-02-11T23:52:00.015+01:00

Karaoke – ‘cantobar’ – on Friday was an absolute bust. Not only didn’t they have ‘everything’ as I had been promised, they didn’t have anything except for... you guessed it, Richard Marx. By the time I had convinced Spoon to duet with me, they had already moved on to trashy teenage ‘gasolina’ disco. We soaked our sorrows at the Red Door and then night-capped at Bar Británico:

On Saturday, we popped by the neighborhood carnaval for all of forty seconds for fear of getting foamed fore dinner:

and a few drinks at a Moroccan restaurant in Palermo:

and then sat the night away at a really cool milonga in Almagro:

We got up early on Sunday for the first time that week to go to the street fair:

before grudgingly leaving for the airport and our respective ways. I nearly froze to death in the exit row (they actually leave the door partially ajar), but managed to get some sleep on the way back. I got into Kennedy around 4AM and had to walk thirty taxi lengths to get to the front of thirty sleeping cab drivers. #1 was also drunk. He drove on the shoulder, weaved in and out of lanes and was furiously honked upat. I made him promise to sleep it off.

Sherman came down for Ethiopian food and some great live soul music on Tuesday. I got a bit of a head cold and am taking it easy. Today is the anniversary of my brain surgery and I dug up this bit I’d written just shortly after the operation:

So they came for me around 7 - I still have my hair at this point. I hadn’t slept much the night before (about two hours), but was pretty used to that after a month of very little sleep. I had already lost my mind at this point from it.

They put me on a stretcher and whipped me down to the second floor. The ceiling lights were flashing by just like on TV. I felt OK, strangely - confident, but not exactly relaxed by any stretcher of the imagination.

“Every Where You Go, You Always Take the Weather” or whatever that song is called was playing – c’mon you know the one. The orderly parked me over some complicated-looking device and started plugging things in.

Someone asked if I spoke Czech and someone said “trošku” (a little). I barked out, “Mluvím dost!!” (I speak enough!!) Turned out to be my neurosurgeon who was just making sure that people spoke to me clearly and slowly throughout the procedure. Yet another example of me making an ass of myself in front of my neurosurgeon.

I woke up to the sound of high-pitch drilling to the left side of my head... and to pointless Czech-chick giggle hoohoo elsewhere in the room. After what seemed to be an eternity, I got up the courage to make some noise through shallow breath and clenched teeth, so as not to lose an ear to the laser.

“Prosím? Prosím! Prosím?!” I ventriloquized louder and louder, until the catty chit-chat came to an abrupt end and a nurse put her head in my face. “Vý jste po operaci, Pane Gisondi! Po operaci!” she beamed. I fell back into dreamland only vaguely understanding that the operation was over.

The next thing I saw was my Mother, Mary and Irina in full-on OR scrubs and masks, eyes asmile, mouths liplessly shouting muffled questions and commands in French and Russian for some strange reason. I responded in kind to their seeming satisfaction. I had some numbness in my left foot, but everything else seemed fine.

I saw my neurosurgeon in the hall and thanked him profusely. He looked very upset. I thought it was because of the numbness in my left foot. I told him, “Well, you had to cut something, don’t worry about it.” He looked at me aghast and then just whispered, “Metastaze.” “Whatever, thanks again!” I said. I only found out what he meant several days later...
~
And I wasn’t thinking about where I was going to be a year from then, I was thinking how grateful I was to be alive (and not a vegetable) that day. A lot's happened since, but it’s great to be in Brooklyn after a year, suffering from a little head cold and eating homemade chicken soup at Tim’s.

missing deltas

2009-02-06T17:32:00.007+01:00

We all went over to the neighborhood Danish church to see the “Princeton Glee Club” last Tuesday. There’s almost nothing I enjoy more than a bunch of rich white kids singing negro spirituals:

Ann missed her connection in Atlanta (due to Delta’s typical, but still incredible incompetence and complete lack of accountability), so she came a day late into her already tight schedule. I took her to the “Modern Art Museum” just around the corner for starters:

which looked like it hadn’t been open in at least a decade. So we wandered down to Puerto Madero and then to one of my favorite restaurants, Café San Juan, back in San Telmo with my neighbors, Keith and Michael for a great dinner before the Red Door for chili bombs:

On Wednesday we went to MALBA, the actual functional modern art museum, and then across town to La Boca to catch the sunset and have dinner at my new favorite restaurant: Don Carlos “Carlitos” next to the Boca Juniors stadium in La Boca, of all places. And although I don’t usually trust anyone with two first names (let alone three), we put ourselves entirely in the hands of Carlitos himself and let him stuff us with a fifteen course meal, completely of his choosing.

“The lady may have a little room left for a very small dessert,” I said after he had brought us a plate of cheese sorrentinos (delicious fat raviolis) to chase down our steaks. Instead of a single, “very small dessert”, he brought three rather large desserts, which we inhaled shamelessly. The bill, like the menu, was completely arbitrary. We were so drunk on food, literally euphoric, that we would have paid anything. It was an amazing experience and surprisingly reasonable. We unfortunately ate too quickly to take any pictures.

After we aborted trips to both Uruguay and the Paraná Delta (not having much luck with deltas), due to a late start and drizzle yesterday, we settled for a tour of Recoleta Cemetery from a resident guide:

and went to Bellas Artes for some more culture. Our walk to the massive Retiro train / bus station for bargain bags and sneakers and the half hour wait at a cash machine was more than enough of a side trip experience. We’re going to spend the day (what’s left of it) in Palermo and then go to ‘real’ karaoke tonight back in the hood.

Here’s a funny and popular local flea treatment product to round out this post:

year of the ox

2009-01-26T21:52:00.012+01:00

We had to watch the inauguration from a Brazilian bar up the street, as the expat dive we had intended to go to was packed to street overflow, due to the Buffalo wings special and huge local TV crew that filled the bar to get the 'American reaction'. This was my favorite part:

And not just for the pleasure of seeing the back-end of a jackass and his last tax-payer-paid helicopter ride, but because of the over 35 degree (that’s like 100 degrees F) spread between our respective temperatures. It was almost worth missing America’s greatest moment in person for the pleasure of watching it in shorts.

On Thursday, Michael and I went down to La Boca to take pictures of brightly-colored shacks:

The next couple nights are a bit of a blur – I’ve been out dancing until 6AM, pretending not to have cancer. What’s funny is that people don’t seem to notice. They can’t even tell! Amazing.

Saturday was to be my night in (the weekends are for amateurs), but my neighbor invited me to a barbecue at his place to meet his girlfriend’s fantastic parents and brother:

I was grilled by the father about all things Czech for much of the evening, until we moved on to the topics of Basque nationalism, the Spanish monarchy, winemaking and New York in the early ‘70s (last time he was there). We laughed and bantered until 4AM. Coty (the lovely girlfriend – Constanza) said that they never stay up past 2, even on Christmas, so the evening was declared an unparalled success!

Yesterday we went from the overcrowded frying pan that is the San Telmo street fair straight into the fire of the ‘Ballio Chino’ for New Year’s:

All the restaurants, as well as the streets and sidewalks, were jam-packed, so we had pizza at a nonstop, but I did manage to find my ‘membranous milk vetch’ in a supermarket, so that’s a relief:

The year of the ox should have interesting implications in the Czech Republic, so please keep me posted. Ann comes to visit on Sunday. Can't wait.

¡che boludos!

2009-01-19T16:51:00.012+01:00

The international rodeo championship opened with a spectacular display of ultra-nationalism (although the beer in the VIP lounge was thankfully imported):

typical of most domestic sporting events, but this time compounded with a disturbing and pointless tribute to the US border patrol (who are hiring!), which had all of the Latin American rodeo stars shaking in their cowboy boots:

I couldn’t believe my luck when I scored an exit row all to myself on the plane to Buenos Aires, until I realized that everyone else had three seats to themselves and my armrest was the only one bolted to the floor. I was also right next to a bathroom with a broken door. I did manage a little shuteye on the redeye in between flushings, slammings and the occasional butt in my face.

I arrived to a rather odd, even for here, financial crisis where a one-peso coin now has more value than a two-peso bill and candy is legal tender. Edible money, very Marie Antoinette, but it only goes one-way: not-so-strangely, you can’t pay the bus driver in bonbons.

I stayed with Keith and Michael my first night and we went to a milonga in the hood. On Wednesday, they helped me move into the adjacent apartment from where I'd lived two years ago and just three blocks away from their place:

http://www.giessoprop.com.ar/ver.php?id=224

We had an ad hoc housewarming party when my French neighbor, Julien, popped by as I was airing out the place from its former tenant. I finally got my mobile working after a one-day, one-way battle with the boldface liar of a not-so-interactive voice response system of the not-so-‘es simple’ non-folks over at mobile operator, Claro. My number here is: +54.911.6131.9074.

We went over to Sarah and Diego’s house for delicious full American breakfasts and anti-depressants at 10:30 PM on Thursday:

and then to the karaoke / cantobar at 'Loca Bohemia' that still hadn’t started by 2:30 in the AM. They don’t really get the concept here, which is a good thing, as you get a professional live band instead of the usual Muzak™ rip-off version and cheesy vacation video (no offence, Steve):

Yesterday we hit the San Telmo street fair and tomorrow, we’ll watch the inauguration with other expats at the local version of the Globe. Go Obi-Wan-Obama!

getting outta dodge

2009-01-10T21:34:00.006+01:00

After a lovely stay in my mother’s gatored community, Sherman picked me up at Newark ‘Liberty’ Airport and took me back to the Tims’ in Brooklyn. I successfully submitted my visa application to the Czech Consulate on New Year’s Eve and Jon and Annette came up from Baltimore for some shrimp cocktail and gherkins:

I met Patrick and George in Williamsburg for drinks, had dinner at Ru and Pamela’s in Harlem, then spent the last couple days in bad weather at an empty Yale with Tom and Pauline and am now back in Brooklyn, of all peoples and places. Tommy’s in town this weekend. We’re going to the rodeo tomorrow at the Garden – VIP suhweeet! It was all the Make-a-Wish™ people had left over from last year - well, that or a day with Barney™.

I can’t take the constant pressure from the imminent switch to digital TV and am going to Buenos Aires on Monday to watch Law and Order in peace. Maybe the land of steaks and sun isn’t the best holiday spot for someone in my condition, but I feel fine and figure I can probably save some money to boot. Ann’s coming down at the end of January. I’ll be back in Brooklyn on February 9th.

I’m sad to miss the inauguration in DC, but I think I’ve already got the gist and feel much the same way:

Today marks the anniversary of my diagnosis: one year since the morning Adlai took me for the MRI that changed my life. And although it’s been a pretty horrible year, I am eternally (however long that is) grateful, obliged and indebted to family, friends and strangers for the love and support I’ve received since this nightmare began. So thank you.

no sleep till brooklyn

2008-12-29T06:49:00.006+01:00

My mother had set the table for Christmas a week in advance, so the plates required a little dusting just before the big day:

We had an international motley crew over for dinner with enough booze to put Santa and all his reindeer out through to New Year’s. And while other countries celebrate the day after Christmas as ‘Boxing Day’, where the tradition is to give gifts to the less fortunate; here there’s ‘Black Friday: Part II’, where the tradition is to spend even more money on pointless crap just for yourself and just because it’s cheaper right after an (inevitably) unsatisfactory 25th. They even make the sick consumer orgy sound like a thrilling movie sequel.

I’ve divided my stay here between the age old Florida pastime of schadenwetterfreude: watching the weather channel and gloating over how terrible the weather is ‘up North’ and hanging with the local fauna (this guy from the 9th hole):

Yesterday I began my clinical trial after a brief consultation with my new doctor outside his trailer:

I’ll expand and expound about why I trust a guy in a trailer more than America’s officially sanctioned cancer industry death camps in future posts – all the invective and diatribe you’ve been waiting for in a neat little series of tirades that have been brewing and festering since my arrival – but suffice it to say that I’m pissed and watching a marathon of ‘House’ reruns on channel ‘USA’ right now is not helping. They just gave chemo to a girl with leprosy for no reason.

My Mom and I went to the beautiful beaches of Gasparilla Island today: where the Bushes spend their post-Christmas holiday. We didn’t see any and so had a wonderful time:

I’m headed back to New York later today and Sherm is going to pick me up at the airport, so the taxi won't cost more than my flight. Happy New Year!

orange blossom special

2008-12-20T15:36:00.006+01:00

Had a lovely time in our nation’s capital and its beltway environs. The American Visionary Art Museum in Baltimore was particularly inspirational:

But the real highlight was Wilco last Sunday at the Opera House – that’s right, second row center! Almost too close:

The Opera has recently filed for bankruptcy like everyone else over here, so they’re branching out a bit. I’m thinking of booking it for next year’s mikeFEST™. The show blew me away and more than made up for that Icelandic nonsense in Prague.

I got to Florida on Tuesday and was met by my uncle, aunt and cousin who I hadn’t seen for quite awhile. We played cards and ate a lot. It was fun. My mother, Bob and I have been nosing around some of America’s greatest discount warehouse stores, hunting for last minute bargains and shrimp platters.

I’m off to Orlando in a couple of minutes to see Zoe’ and her Mom. Healthwise, looks like the neuropathy is here to stay in varying degrees of numbness. I’ll set up the Wii Fit thingy when I get back and start my electronic yoga routine as well as daily trips to the state-of-the-art fitness center, pool, hot tub and sauna.

Pretty much everyone in Florida has cancer, so I fit right in. My post-Christmas plans are still up in the air, but I’m planning on going to the inauguration, even though the post-election euphoria is showing some wear and tear:

and then to Buenos Aires in January for a couple of weeks. Thanks again for all your comments and support. Miss you all, merry Christmas!

five capitals

2008-12-11T22:41:00.009+01:00

Sorry for the delays. Wow. It’s been awhile since Shay and I finally caught that sunset back in Denver:

Mark picked me up at the airport in Austin and we went out to the ‘ham jam’ – a monthly jam session of around a hundred young musicians in this really nice older gentleman’s beautiful mansion. Every room, terrace and closet had people playing fantastic music in it. Great food and drink to boot. Very cool:

We went to see live (music) shows every night, often racing from one to the next, except the night I made Mark and a friend watch Slacker, the main reason I’d wanted to visit Austin since college. They hated it. And no wonder. Austin hasn’t changed that much, so it plays more like a documentary there.

We even got up to Mt. Bonnell to pay homage to Christine at her behest:

And drove down to Houston on Thursday to see his friends play at a dinner theater. It was worth both the five hour car trip and the speeding ticket.

Up early and off to Baltimore on Friday, Sherman met us at Jon and Annette’s house. And on Saturday, we went down to Richmond to see my childhood friend, Kevin, and his new wife, Peggy. We were a bit late, so Kevin had started without us and didn’t quite make it through dinner:

After a delicious all-you-can-eat brunch, they dropped me off at Miguel’s on Sunday, whence we went to dinner karaoke in Arlington (a little risky, but no one was stabbed). On Monday morning, Miguel and I went to the Czech Embassy, where my application was promptly rejected as being ‘out of their jurisdiction’: as my ‘trvalý pobyt’ is in New York, I’d have to apply there. I didn’t argue. Feeling defeated, we spent the day giving inspirational historic speeches at the Smithsonian:

Miguel drove me back up to Baltimore Tuesday evening and Taffy took Jon and me out to lunch yesterday with her beautiful eleven-month old baby, Greyson:

In addition to our senior yearbook, Taffy brought along some old high hair photos and two letters I’d written her my freshman year of college: replete with eclectic time-capsuled period memorabilia. There was even a poem!

I’d spent Tuesday either on or over the toilet with some sort of dysentery/stomach virus. And my (cancerous?) lymph nodes have been swollen and slightly painful, but both conditions have almost completely subsided in the last two days.

I should probably be making more of an effort to look into clinical trials, but I’ve become increasingly suspicious of the motives of the drugs industry, direct or indirect sponsor of all of them. I’m feeling very ‘if ain’t broke don’t fix it’ right now and am enjoying my relatively cancer-free vacation.

Hats off to ‘Aunt Lil’, Zoe’’s Mom, whose latest CT came back tumor free! Great news!

We’re having a birthday party here for and at Jon’s on Saturday, so if you’re in the Baltimore/DC area, let me know – it should start around 3PM EST. See you there!

things to do in denver

2008-12-01T21:20:00.016+01:00

Shay took me on a tour through the windowless ventilation ducts of the Hyatt to see the sunset:

Back at the house, drinking with the cat:

we got ready for the big day:

and went over to Ann’s parents':

for a fantastic Thanksgiving dinner with all the trimmings:

before hitting the Czech bar for karaoke:

and enjoying the first snow of the year:

in a city already really looking forward to Christmas:

I had an amazing time here and am off to Texas, of all places, in a couple of hours for my first visit to a ‘red’ state. Feeling pretty well. Hope you all had a great Thanksgiving. More from Austin.

picture post

2008-11-24T20:10:00.017+01:00

I’m in Denver now with Ann. Am having such a great time that I’ve had no time to write (sorry Greg) and given my new camera (which I’m not particularly fond of) and the artfartsiness that is San Paco, this post will be more visual than textual:

Arrived without too much ado after a blast in NYC with Tim et many als. Tommy picked me up on Sunday and took me back to his crib:

Quite the climb up, but what a view when you get there:

And spending ‘more money [on me] than a drunken sailor’ ($15), Tommy took me to a fancy spa up in Calistoga for some hot springs (clearly marked as hot) and clearly ‘not for poor people’:

And although the abandoned boarded-up gas station may hint at progress to come:

the lines that wrap around the block at the Skid Row (aka Jones St.) employment office point to a different reality:

and while the SF mint works 24/7 to print more money, Fort Knox, emptied of its gold, is now open for self-storage:

Insulated from all this in a Korean karaoke with Ann, singing along to images of Prague for some strange reason:

and with a decadent macroörganobiotic barbecue and faux band photo session as the fog rolled in at Golden Gate park on Saturday:

it was easy to forget our friends back on Skid Row, so we went to the track for $1 Sundays: dollar beers and dollar hot dogs, to place our bets with the rest on not-so-easy money and pipe dreams:

We broke even. Neuropathy marginally better. Miss you all. More soon.

intrepid

2008-11-13T22:32:00.004+01:00

I’m winding up my time here in New York - off on Sunday morning to San Francisco to see Tommy and eventually Ann. I’ve made some changes to the blog (look to your right) to reflect the fact that I’m no longer in the hospital or even in Prague for that matter, while updating the picture from one showing me without hair to a recent one of me trying to pull it out (courtesy of Pamela – the picture, I mean).

I just got back from more laundry and yet another delicious soul food lunch special. I think I may be addicted to both. Soul food restaurants seem to be the only places to get large portions of unpretentious, pronounceable vegetables at reasonable prices in New York, not to mention jerk goat and grits.

Last Friday saw Tim, Sherm, Christine and me up at Tom and Pauline’s in New Haven, of all places, for a brief look at Yale, the fall foliage and to clear the beach of vermin for the season:

Back in Brooklyn on Saturday, I met up with Jessica who had flown in from Maine just to sing karaoke with me. We were out until almost 6 in the AM, still singing medleys of TV theme songs to anyone who would listen.

After lunch with Pamela and John Oliver, of all people, in Chelsea on Tuesday, I tried to catch up to the Veterans’ Day Parade, but those vets were either too fast or I was too easily sidetracked.

I stopped in to see a $10 ‘psychic advisor’ palm reading gypsy lady, who told me that I ‘will have a very long life’. That finally settled and much to my relief, I tipped her two bucks and took my time (now that I had more) getting to the Intrepid, the ostensible start of the parade:

The Intrepid had been billed as ‘the greatest symbol of peace’ in New York Harbor that morning by the douchebag singing Bush’s praises and running the Veterans’ Day ceremony. He must have missed the Statue of Liberty somehow on his way in - gigantic artillery piece or surface-to-air missile in the way, I guess.

The neuropathy has stabilized for the worse, but I bought a pair of high tops to improve my support, widen my wheel-base and fit in better in Brooklyn. Three hours of walking didn’t do me any favors, so I met Marguerite for drinks and Thai at the end of my hike in midtown.

Thanks for the comments. I’m off to town to buy a camera before the sabbath. Later.

yes we did!

2008-11-05T19:04:00.009+01:00

After a seemingly short transatlantic flight (despite the curmudgeon next to me - long dull story), I landed in a laundromat for the first time in well over twenty years. The locals walked me through the wash and dry, even offering well-guarded tips along with the detergent. I haven’t used a washing machine in twenty years, I said. Yup, it’s tough times, they all agreed.

When I went to mail my ballot on Friday, the line was about fifteen minutes deep at least. A really nice guy in line gave me a stamp and then gave me another when he found out it was for my ballot – just to make sure, he said. People are so friendly in Brooklyn; it’s almost weird.

Tims’ (there are indeed two of them) party that night went ween, with all and sundry all the groggy the morning after. Tim even made a traditional Halloween turkey to go with the pumpkin:

Got a free bottle of wine on Saturday at a fancy wine bar just by sharing it with the waitress – who woulda thought? As I say, people are nice; I’m not used to it.

And on Sunday, we walked the two blocks to watch the NYC Marathon blow through the hood. There was a gospel choir and band with a singing, hopping, dancing preacher cheering the runners on for Jesus in front of the Baptist church. The music was great:

Contrast all this good cheer with my trip to the Czech consulate on Monday. Boy, was it lousy to be home. Over an hour wait with only two (embarrassingly stupid) NYU girls ahead of me, only to find out I was missing a paper that I had two copies of – with me at the consulate. It’s kind of like when a southern cop breaks your taillight just to give you a ticket. So my application will be (surprise!) delayed as 'the document' has to be (surprise!) notarized (again) in the Czech Republic.

I went into Starbucks yesterday to use their bathroom and get my free cup of coffee for having voted (a promotion later declared illegal by party-poopers) and the atmosphere was electric with the prospects of free toilets and coffee, both incurring even longer lines than at the polls.

Around town, the preference was clear. From the sweatshop poster stuck to the bottom of a dirty window in Chinatown declaring the only single, solitary Asian voter for McCain:

To the upscale storefront in Chelsea with a dozen life-size Obamannequins sporting this winter’s (admittedly disappointing) fashions:

Back in Brooklyn, there was shouting, cheering, dancing and fireworks as the preliminary results began to indicate not only an Obama victory, but a landslide. And I couldn’t be more pleased and proud.

Oh yeah, my health. Neuropathy quite a bit worse – almost up to my knees. Other than that, I feel OK. Off to meet Sherman in our old ‘living room’ at Mona’s in the East Village. My number here is +1 347 633 7738. Miss you all in Prague; well most of you, anyway...

berlin

2008-10-30T01:57:00.008+01:00

I’m in Berlin now at Henny & Florian’s after their spectacular wedding on Rügen Island over the weekend:

Damien and Ashley were in town until yesterday and Jirka is here until I leave in a couple of hours for New York. We had sushi on those little boats yesterday:

Having a great time here and wish I had more time to write about it, but haven’t even had time to think, let alone pack (again), so you’ll have to settle for kitchy pictures like this one:

I hope to see many of you at the Tims' Halloween Party in Brooklyn this Friday night at 224 St. James Place in Clinton Hill of all places. Until then!

encouragingly inconclusive

2008-10-24T04:33:00.003+02:00

My twenty minute super-duper-high-tech (and insanely expensive) nuclear PET/CT exam took seven hours on Tuesday when all was said and done, but I got the results right after which were as disturbing as they were encouraging. The report starts out with “the patient (‘sick one’) with small cell lung cancer...”

This was just handed to me. I looked at it and dismissed it as the all too usual mistake. I took the diagnosis to Dr. Klener who took a pen and crossed it out, replacing it with an almost illegible ‘something something melanoma’. This is the same doctor who crossed out the ‘melanoma of the lip’ crap on one of my older documents.

They don’t call him ‘golden hands’ for nothing. I asked him to cross out the other tumors on the report, but it looks like I only get one at a time. I’m sure these penciled in amendments make their way into the ‘official’ system eventually.

The good news is that it looks like the remaining tumors have all shrunken somewhat and/or decreased their metabolic activity. “It looks like regression,” the report concludes. Nice.

That Facebook is a can of worms. I’ll get around to posting a photo and accepting all your lovely invitations of friendship forthwith. Unfortunately, I’m furiously packing for the big trip at the moment and don’t have the time to do it justice. Gotta go. Dropped Šlupers off at John and Bo’s for the duration:

arbitrary milestone

2008-10-15T21:27:00.002+02:00

I celebrated? the anniversary of my illness on Monday as well as having lasted six months beyond the average sell-by date for those with my condition. It was a year ago Monday that I started inexplicably dropping beers downstairs during my vernissage and I can now both safely hold and even drink them again!

When they tell you that you have cancer, they (usually) don’t tell you that you’re going to die. They wait until you ask, ‘how long do I have?’ Then they look wistfully askance and tell you the average survival time for what they think you have. They might even give you some ranges and percentages, cross-calculated with treatment options and other scenarios, etc. So you’ve got that to think about, even though you probably stopped listening awhile ago.

Then they tell you that ‘all cancers are different,’ which you dismiss as a platitude (if you’re still listening), but shouldn’t. All cancers are different. They may be rogue, rowdy and rebellious, but they’re your cells after all. That’s how they manage to fool your immune system. Cancer is as personal and unique as the color of your eyes or the shape of your nose. This leaves ranges and averages rather arbitrary.

My own cancer seems to be luckily less ambitious than is the norm for its particular breed. So happy arbitrary milestone to me! The MRI came back negative (or positive if you’re a glass-full type not in the medical profession) – no current CNS metastasis. The sinusitus (that I’d forgot I had) has also improved.

The neuropathy has stabilized to the very tips of my fingers and the bottoms of my feet. It feels like I have shag carpeting inside my sneakers. I’ll get a CD of the PET/CT and various other acronyms on Tuesday, but probably won’t be able to read any of it. Results will be over the phone later that week before I leave for Germany.

Really looking forward to my upcoming trip(s) and hope to see as many of you as is superhumanly possible. Take care and thanks for the comments. Taffy, now there’s a lass from the past! Keep on rockin’ girl.

self-portraits

2008-10-09T20:18:00.006+02:00

I cornered Klener in the cafeteria at Homolka on Tuesday (I was nostalgic for the salad bar) and explained my dilemma. He told me to stop by his office before my MRI and he’d arrange the PET/CT of my lungs/torso, before I left for the States. Which he did – for the 21st of October at 7:20 in the morning - so much for being booked out for the rest of eternity ;-)

I had the MRI at 2 and got the results on CD immediately after:

Looks pretty good to my amateur eye - better than last time, but still some swelling. I’ll have to wait until Tuesday for the official analysis. I looked at the last (lung) CT again (for the fiftieth time) and noticed some cloudiness not present in the previous one. Really, could be anything; I’m not too concerned, sort of.

I had my busted crown from February finally replaced yesterday. Looks only slightly better in my mouth than in this plaster mold:

see:

My neuropathy is very slowly, but fairly surely fading – a trend I hope will continue. I was pretty worried that it would be permanent, leaving me worse off than before the operation. I saw Dr. Wang again today for some relatively painful acupuncture and magic herbs, which may or may not be helping.

That chemo tirade will have to be postponed to a less fun-filled post, as I'm not in the mood for a tirade. Thanks again for all of your comments and words of support. I’m really looking forward to seeing you all stateside (I just love that word) very soon.

PS. It was a real mötley crüe down at the Globe at 3 in the morning last Thursday to watch Palin not answer her own list of questions, let alone the moderator’s:
http://www.youtube.com/watch?v=azaNxqfnI7c
and something else to think about:
http://www.youtube.com/watch?v=vmYqRfp6-x8
until next time...

no news is no news

2008-10-02T16:19:00.002+02:00

Before we all beat up on Batko, we should realize that he just unexpectedly inherited hundreds of patients of all ages and backgrounds in varying states of decay, through no fault of his own. He didn’t choose to be my doctor, nor I his patient, though.

But what I think the good doctor meant by being ‘lucky to have lived this long’ was that it is very rare that melanoma IV patients respond to chemo at all and I should give it another shot. Unfortunately, he is drawing the conclusion that I somehow responded ‘well’ to chemo.

Every doctor wants to believe that their method works – it gives meaning to their lives. I had planned on publishing my own theories as to why I’ve been ‘lucky’ to have lived this long, but I won’t be as presumptuous as the doctor and that sermon will have to wait, but look for my chemo tirade in my next post (rehearsed with Greg and politely delivered to the doctor/choir a few minutes ago – I had to call).

And we are in complete agreement. He discussed my case with the other oncologists and they’ve decided that I should wait and have another CT in two months. So I asked for a PET before I leave for the States to have something for the clinical trials. He argued as to its usefulness (the little lung tumors? wouldn’t show up) and suggested something called a PET/CT that would be more effective and I said ‘Let’s go!’ and he said it was booked out at Homolka for the rest of eternity and I said I’d see what I could do.

PLT: 113 (low) WBC: 8.9 (high/normal)

I had my last cigarette (a Viceroy 100 that I got from a sweet old man) on my way to the hospital Tuesday morning around 8:45 and will not have another one – ever. Although I had cut down significantly over the last year (from roughly 2 packs to 2 smokes / day), I just didn’t think that I deserved to get better if I didn’t quit, so I quit.

I did “Save a Prayer” (before he got fat) and “Landslide” (Nicks/Pumpkins mash-up) Tuesday night at the karaoke, making the best use of my lungs while I’ve still got them. I’m sure to waste them tonight shouting at the television. Don’t miss it: 21h EST on one or more of those thousands of channels you all get now.

probably not good

2008-09-30T18:39:00.000+02:00

Irina and I went to Motol this morning to meet my new erstwhile oncologist (mine is recovering from surgery) and get last Thursday’s CT results. That’s right, the verdict is: probably not good... maybe:

“Multiple small lesions and ‘infiltrations’ between 2mm – 4mm are apparent in both lungs.” They suspect lung metastasis. But it could also be some sort of inflammation - they can’t really tell or say. But they think it’s metastasis, they’re sort of sure (like they were about the ‘first’ lung tumor). The other lymphatic tumors are slightly reduced or the same as before. Gall bladder still in tatters, but the good news is that the report says nothing about my prostate. Yeah!

I compared both CT lung exams (July 24 & September 25) and can’t see any difference therebetween even with the fancy magnifying glass function. I’ll be looking for a second opinion, or yet again, a more definitive first.

Dr. Batko did tell me that I was very lucky to have lived this long. I’m to speak with him again tomorrow after he’s looked at today’s bloodwork and consulted with the other doctors (including my own, I think) at Motol and they come up with a plan/proposal for my next treatment, which I will most likely politely decline.

Because the really good news is that I now qualify for clinical trials! I’m just trying to remain positive. More as this story unravels...

Monogram were great last night - as always. I will be in Atlanta (ATL) twice actually in December for an hour apiece if you want to meet up for a quick $18 beer, Hunter.

the american tour

2008-09-26T16:31:00.006+02:00

The tingling seems to be fairly steady in both feet and hands now and, it’s either gotten slightly better, or I’m just getting used to it. I am, however, having more and more trouble walking and standing for longer periods, but this usually remains unnoticeable to all but the most observant. We’re going to call it ‘peripheral neuropathy’ from now on, as that’s the name of the (more chronic) condition and fairly common side-effect of chemotherapy.

I got my ticket for the post-election gloat-boat, the “In your face, grandpa, and you too, ya cheap hussy” Express, for less than $700 (that’s like 50 crowns!) for all these imminent arrivals:

Sunday, Nov 16: San Francisco (SFO) 12:08 PM PST

Sunday, Nov 23: Denver (DEN) 11:44 PM MST
Monday, Dec 1: Austin (AUS) 10:09 PM CST
Friday, Dec 5: Baltimore (BWI) 4:23 PM EST
Tuesday, Dec 16: Fort Myers, Florida (RSW) 2:37 PM EST
Monday, Dec 29: New York (EWR) 10:56 PM EST

So buckle your seatbelts! Despite the recent ‘mental recession’, the fundamentals of the American economy appear stronger than ever: waste gas and pollute the air for next to nothing and buy lots of Christmas presents made (or at least bought) in USA.

But I progress. From October 30th to November 16th I’ll be in the greatest New York area, as well as after December 29th. I look forward to seeing all of you and your respective sundries at our mutual conveniences on any stop of the tour. That’s a pretty wide berth: you have no excuse.

I had my long-awaited CT scan yesterday morning. It took them four tries to get a working needle in for the contrast solution, so I’m back to junkie pincushion arms after a long break. I got the results on CD immediately after, but can’t find anything, nor have been able to in the past, except that my insides are a lovely shade of blue, my boxers are a little too tight in the waist, I have a strange wire running down the right side of my body and my spine is pretty straight for all my poor posture:

My oncologist, in a surprise move, is mysteriously disappearing (on purpose) for a month, or at least until after my last opportunity to see her before I leave for Germany and then the States. I’m to have blood tests and get my CT results on Tuesday morning with her replacement, Dr. Batko. I’m having some abandonment anxiety. I hope to arrange a PET scan before I leave, depending on Tuesday’s consultation with the second string.

I saw Dr. Wang today and told him about the neuropathy. He stuck ten relatively painful pins in my head, turning me into a real Hellraiser, and left me for almost an hour. I feel pretty much the same, although my much lighter wallet has put a little skip in my step.

Results on Tuesday could affect my US itinerary, so bate your collective breath until next time. Don't miss tonight's presidential debate, even if McCain does.

homeward bound

2008-09-19T13:24:00.005+02:00

The paresthesis, for lack of a more accurate term, has got substantially worse and is now accompanied by burning sensations on?/in? my right hand and foot along with the previously-reported pins and needles. The good news is that it’s become so bad that it’s passed (more diffused) to my left side as well – strangely, but logically, considered a positive sign in the topsy-turvy world of neurology.

Diagnosing me via SMS (I was in Spain, she was leaving for the States), my neurologist blamed the usual suspect, the chemo culprit, for my new-found numbness. Seeing me in person on Tuesday, my neurosurgeon, Dr. Klener, gave me a slightly more thorough exam and concurred with her diagnosis. I will have an MRI on October 7th just to be sure. Forgot to ask whether or not this kind of nerve damage is permanent.

I went over to Will and Irina’s for dinner and the traditional bestowing upon of the winter coat on Wednesday - my Mother got last year’s. My first leather coat! And boy is it stylish! But here’s a picture of violins instead:

¡Me lo pasé dpm en Madrid! ¡Gracias a todos! Despite the fact that I lost another molar - this time to a potato chip, which I shouldn’t have been eating anyway. My dentist patched it up yesterday and will replace my chewed-up Terminator-(1)-looking crown, busted since February, a week from Monday.

The big Bulgarian beach barbecue is off (not only for the obvious health implications of ‘beach’ and ‘barbecue’, not to mention ‘Bulgarian’); and although they were practically paying us to go there toward the end, the grapes were really a bit sour: -20 degrees and hail the size of soccer balls or something. I did, however, get my ticket to the States after a protracted struggle with the delta.com booking UI, which has no back button and expects both decisiveness and perfection at every screen.

I’ll go up to Rügen Island for Henny and Florian’s wedding weekend on the 24th of October, apparently, and fly out of Berlin nonstop to JFK on the 30th. After about two weeks in the tri-state area, my other intended ports of call include: Baltimore/DC, Denver, San Francisco, possibly Austin, Miami and then Fort Myers, Florida for Christmas.

Tickets are surprisingly reasonable, pretty much regardless of the order of the aforementioned cities, so let me know if there are any potential conflicts or preferences. Nothing’s set in stone, I’m still flexible, but need to be fast. I should get the ticket early next week at the latest.

After Christmas, I’ll either go back to NY (for more), to Seattle or Bethesda (for clinical trials), Argentina and Brazil (just for kicks), or any combination of the above. I’m to return to Berlin on February 17th - hopefully to good news from the Embassy. I still need to get my papers in order (all over again), sublet my apartment and find someone to take care of the šlupers.

Some of my friends from the Northwest Territories took umbrage at my characterization of Sarah Palin as “Canadian-sounding”. If only she were Canadian, as Mary points out, she would have more to recommend her. I’d take Anne Murray or Robin Sparkles over Palin any day. Unfortunately, it’s specifically forbidden by the American Constitution. Wait a minute... that never stopped Bush!

So apologies to my brothers and sisters both to and from the North and, if you haven’t seen it already:

http://www.nbc.com/Saturday_Night_Live/video/clips/palin-hillary-open/656281/

Vrat's birthday tonight.

la vuelta de españa

2008-09-11T12:48:00.006+02:00

Sorry it’s been awhile, but I’m in:

And don’t have a lot to report, medically, that is, but hope to make up for lack of text with some visuals.

I got the part as ‘housepainter extra’ or something from that casting after all. I guess dude must have been: too drunk to remember, overcome by remorse, completely desperate or most probably just some low-level flunky who happens to have a laptop and hang out with film people while trying to look important.

Fortunately, I had already bought my ticket to Madrid and therefore had the perfect excuse not to get up at 5AM for three days in a row and go all the way out to boondock Barrandov for full-day pretend house-painting and crap money. Maybe next time.

I arrived here last Friday, pretty much without a hitch - plane was late, food was terrible, but I was not immediately deported :-) Paco and I went straight to the hospital from the airport (his appointment, not mine for once), so I could feel a little more at home - shop and compare, as it were.

I’m floating between Pensión América (Paco’s Mom’s place downtown, where I used to live) and his beautiful new apartment in the near-burbs of Coslada from whence I’m writing now.

Been travelling around a lot: Chinchón, some town called Ear, up to the source of the river Manzanares, etc. and on Tuesday, we went to Salamanca to see Paco’s sister and pick up his nephew for school in Madrid. Here’s a picture of Paco, me and Rebe (his beautiful bird) in the Plaza Mayor in Salamanca:

Having a really great time, eating unbelievably well and healthy - no chorizo for Mikey this time, but lots of fish, fruits and vegetables:

I’ve been experiencing some paresthesis (numbness, tingling) in my right foot and hand, which has had me a little worried. I’m going to try to order a brain MRI when I get back to Prague, as it’s about time for one anyway.

Although it would be a greater risk than coming here, I may go to Bulgaria with my Prague peeps next week. I’ll let you know. Going to see the Senator DJ in Lavapiés (Footwash) tonight – should be wild.

As always, thanks for your patience, comments and continuing support. ¡Hasta muy pronto!

working in the garden

2008-09-01T23:11:00.007+02:00

I had my last dose(s) of radiation today (I had mistakenly miscounted in the last post, apologies) and couldn’t be more pleased. The red areas are redder and I’ve lost a bit of hair in the pit and, aside from the: seemingly indelible, inscrutable, ‘out, out damn spot’, unscrubable, stigmatic welts of crosses from the dye, I’m fine.

Went to my good friend and former prodigy’s cottage up in my old rhinoceros stomping grounds of České Středohoří on Friday to help him with some gardening:

I unfortunately got called back on a callback for a commercial much earlier than I had planned on Saturday afternoon, only to find out that the casting director was the selfsame schmuck I had a bit of a ‘disagreement’ with last Tuesday at the karaoke of all places. With my recently-acquired arch-nemesis calling the shots, I doubt I have one. Prague is really too small.

So I bought a ticket for Madrid. I have some time before my next CT scan on the 25th and need to get the hell out of here for a bit. I’ll have a PET scan some time in late October and then plan to go to the States in time to vote.

If melanoma ever makes me crazy enough to pick a gun-toting, creationist, pregnant-teenage-daughter-having, small town politick, Canadian-sounding (no offence, but c’mon), right-wing whackjob as my back-up, just pull the plug.

My mother fractured both her tibia and her fibula playing golf with a baby this past weekend, but is recovering nicely.

Happy (only-in-America, gotta be different) Labor Day! Go Obama!

something rotten in iceland

2008-08-24T16:52:00.005+02:00

Jon left Thursday at 4AM and Mark took off yesterday morning. Jon and I went to see Sigur Rós last Tuesday amidst all the hype, hyperbole and hooplah over Britain’s #5 band. Jon and I have probably seen close to a hundred concerts together and this show was no exception, since we saw it together. What made it exceptional was that it was the worst, most expensive (@$50) concert either of us had ever seen. Not that we saw it, really, as there was a very bright spotlight trained on our retinas for the duration of the show.

From the inane rambling falsetto bilge of their made-up language to the droning dirge of the pompous, yet uninspired instruments, these guys (and their PR machine) did not fail to disappoint. Their cookie-cutter formulaic cheese coupled with the unlimited freedom of arbitrary, meaningless strings of phonemes make them a better business plan than a band, as the duped hordes of post-gothic whitey that filled the stadium rapturously attested. They spared us a second encore, but replaced it with pretentious histrionic curtain calls. A sham of a mockery of a farce of a scam. The emperor is stark naked and we felt like we’d been mugged.

My blood results were good last week: white blood count: 8.5 and platelets: 202. Thursday’s sonogram revealed a very enlarged (by 13mm) and damaged gall bladder, most probably a direct result of the chemo, but no stones, sort of thankfully. The damage (chronic cholecystitus), I’m told, is permanent, since it’s chronic. My prostate continues to be enlarged as well, but that was all the bad news. My liver, kidneys, pancreas, bladder and even my spleen, all check out fine.

Radiation again tomorrow – just five more sessions to go. I’m starting to get pretty red around the radiated areas now, but was expecting this, as I’d seen it on my fellow radiatees in more obvious places.

Had a great but exhausting time with Jon and I landed a lot of unexpected work last week, so I haven’t been able to post. I went to Efka & Scott’s wedding out in the middle of nowhere yesterday and had a blast. Here’s a picture of the bride blushing along with her bridesmaids, the groom and the preacher:

Looks like we’re off to Crimea if we can get there before the Russians invade (again). Still no visa.

the paper curtain

2008-08-15T13:25:00.004+02:00

I met with my radiologist on Monday. She looked at my chest, declared an improved case of shingles, cancelled my medication, filled my other prescriptions and sent me on my way to the radiator. A whole three minutes! I think she’s warming up to me.

I threw up a whole lot of nothing yesterday morning before heading off to the hospital for blood tests and round #4 of radiation. Radiation sickness is pretty different from chemo nausea – not as bad really. I feel OK today.

After weeks of amateur repainting of my tattoos by just about everyone from a few aspiring Modrians to mostly wannabe Pollocks, the Chinese whispers had caused a drift in my markings of several centimeters in seemingly random directions. This didn’t go unnoticed by the professionals and they had to start from scratch by taking more chest x-rays and realigning me with my original CT.

The subsequent over-painting left my torso a messy mass of religious and runic symbols:

Mark thinks that they’re not really giving me any radiation, but just painting crosses on my body and hoping that will work.

I get my blood results back on Monday along with more radiation and have a sonogram on Thursday of my gall stones and then again more radiation.

The Russian invasion of my intended beach vacation and my ongoing visa limbo has left September’s travel plans unclear to say the least. We’re now thinking Bulgaria. I’m going to have to bring some stronger pressure to bear on my visa situation if I ever hope to get out of the country alive (pun intended). Jon gets back from Germany tomorrow morning with news from beyond the paper curtain.

visa: it’s everywhere you wanna be

2008-08-07T23:10:00.001+02:00

They weren’t kidding when they came up with that slogan. I still don’t know what’s going on. The woman at the consulate gave me the number of the law that I was ostensibly breaking last week and it turned out to have something to do with the division of assets after the break-up of Czechoslovakia or something. I spent an entire week thinking that they were trying to pin the split of the country on me somehow. I had nothing to do with it, I swear. I even thought it was a bad idea at the time and still do. “So you’re the reason we lost the Tatras,” one friend said to me. The shame.

I found out today that one of us (I still think it was her) got the year (of the law) wrong and it actually does refer to the latest long-winded list of reasons that one can be denied a visa to the Czech Republic without being specific at all, however, as to which I am guilty thereof, violation therein, nor compliant nonwith. Oh well.

I bowled a 192 on Saturday - not my best, but a hell of a lot better than my last game in December before my diagnosis (I was kinda paralyzed), which was a miserable 40: lower even than the 68 I got my first game at the age of 8.

We had a motley-crewed barbecue blast at Jirka’s on Sunday. Here’s a picture of a man with breasts who was at the beach – I thought I had it bad:

Radiation on Monday was around 40 seconds (I counted - silently to myself) of low-pitch dentist drill buzz in the radiator for each pair of tumors. I then met with my radiologist for my first check-up with her. She said hello, looked at my chest, declared a mild case of shingles, cancelled Thursday’s radiation and prescribed a lot of heavy-duty medication. "See you on Monday. That is all."

It’s clearing up fairly nicely already and I should be ready for Monday’s session. Tim left yesterday morning and Jon comes tomorrow with his wife, Annette, so Mark had to redo my tats today.

the radiator

2008-08-01T16:37:00.004+02:00

Apparently my 11AM Monday radiation appointment was only ‘orientační’ or ballpark for 12:30PM, which is now my newly-established ballpark time – every Monday and Thursday until the 28th. The procedure itself is quick, painless and kinda weird if you think about it too much. I got a blister on my chest the day after my first treatment, but feel fine now after the second.

Tim and I got up yesterday morning just after six for a big day at the hospitals and went to see my oncologist shortly after the blood test. My platelets are up to 180! That’s at least 30 to spare and still be barely healthy! WBC steady at 3.2. The ‘official’ CT results are riddled with spelling mistakes in Czech and close to incomprehensible otherwise, but here goes:

I have four tumors, not three: two in the left pit nodes and two in the mediastinal lymph nodes – very near the lung, but not actually in the lung, after all. All four are ‘slightly’ shrunken when compared to the May 16th CT, according to the report’s conclusion. If you look at the actual numbers, however, or listen to my oncologist for that matter, the shrinkage is a bit more significant. Example: the largest tumor near the lung has gone from 38mm to 26mm in diameter.

I asked my oncologist, since all of my tumors are now purely lymphatic, if we could take her down to DEFCON 3, as it were, (or ‘orange alert’ for those of you who didn’t grow up during the cold war) from Stage 4 melanoma. She tapped her head (indicating my former baseball brain tumor) - “But, that’s been long gone since February!” I protested. She said that it really didn’t work that way :-(

They’re also a bit worried about my gall stones and will do a sonogram on the 21st. Between the morning sickness and the sonogram, I should give birth sometime in October – to an enlarged prostate.

We passed the time between appointments hanging out at Homolka and playing with a lucky, limber scarab who impressed us with his acrobatic feats of fancy:

Then off to get zapped again. The lab assistant asked me:

“You’re the guy who took that mole off himself, right?”
“Yeah, that’s me, some hair and string, yeah...”
“That’s not a very good idea.”
“No, not really, no.”

She took this picture of me in the radiator:

We got up this morning to go to KV, only to find out that the buses were sold out until night time. Oh yeah, and my visa was rejected today - more on that (hopefully) in my next post. Stay tuned!

motolFEST

2008-07-25T15:53:00.002+02:00

Thanks for all your supportive comments and sorry this post is such a long time coming, but it’s been a pretty busy week.

I got up at 5 in the morning on Monday to meet Tim at the airport (I was still a bit late) and we took a taxi straight to the hospital for my blood test. Platelets up to 82 and probably much higher by now; WBC 3.2 and also likely on the rise.

I asked my oncologist about the phenylalanine connection and she was unaware of it, so I don’t feel so stupid. Going from thinking for months that I had brought this upon myself by being cheap and impatient and performing home surgery, only to find out that that probably wasn’t the cause. To realize that I had possibly been sabotaging my own therapy by being vain and wasteful is a lot to take at once. Shoulda woulda didn’t, but don't anymore.

Round two of ‘radiation planning’ on Wednesday consisted of a repeat repainting of my tattoos and another completely uneventful non-‘spin’ in the ‘simulator’ for about ten minutes. Maybe I should keep my eyes open or at least try not to nap next time. I go under the zapper for real on Monday at 11 and am supposed to bring my own towel.

We went to see the Hungarian gypsy band, Parno Graszt, that night at Rock Café, who played for an hour and a half on stage and then another hour and a half unplugged at the bar right next to our table. Excellent.

I can't make head nor tail of my CT scan results from yesterday, so I’ll have to wait for the official analysis some time this year. I didn’t have my žádanka, so we had to wait until my oncologist sent it down Stone-Age-pneumatic-tubicly. The nurse was a bit of a bitch and answered all of my questions with “LIE DOWN!” so I did, eventually. She then stuck me with the old plastic kanyla needle and pumped me full of contrast solution – pretty painful. Luckily, the whole thing lasted less than 20 minutes.

I had Dr. Wang’s reception in stitches when, after having grabbed a pair of filthy old lady fake leather sandal shoe-type things that certainly didn’t look any more hygienic than my own Nike™s, asked, “I’m not really expected to wear these, am I?” The owner of the ‘shoes’ came out moments later to the sound of muffled snickers. I fell asleep during acupuncture and dreamt that I was having acupuncture.

Am having a great time with Tim, who seems to find more time than I do to post. There are thousands of those posters left all over the hospital and the event happened well over a month ago. I felt entitled. Here’s a picture of Tim, Martha, the poster in question, and Mark:

I don't know if you can make it out, but the poster shows doctors and patients drinking, urinating and being attacked by dogs.

forget that mole?

2008-07-16T15:42:00.004+02:00

I got my histology (or lack thereof) on Friday for the moles I had excised last month: negative for melanoma or cancer of any kind (negative test results are inevitably positive news in the medical world). This includes both the collar bone mole and the widely and long-sus/expected (by everyone but my oncologist) previously-alleged ‘primary tumor’ on my arm.

The one on my leg revealed some maybe potentially pre-cancerous cells, but nothing serious and nothing more. My dermatologist was a bit baffled, but said that it was possible that the moles had gone into complete remission or had never been cancerous in the first place. All three were completely removed along with the adjacent healthy tissue. The search for the primary tumor continues sort of, although no one seems to care too much at this point what started this mess in the first place.

My latest (serious) theory as to the cause implicates my several years of (sporadic, but) excessive doses of supplemental amino acids, specifically lysine and phenylalanine, in times of stress (which was much of the time). Lysine suppresses arginine which “retards the growth of tumors and cancer by enhancing immune function” while phenylalanine “should not be taken by people with preexisting pigmented melanoma, a type of skin cancer.” Oh, that. Now you tell me.

I’ve been taking phenylalanine on a fairly irregular basis for almost 20 years. L-Phenylalanine, as a precursor to tyrosine and hence the three neurotransmitters: dopamine, norepinephrine, and epinephrine, “increases alertness, elevates mood, decreases pain, aids in memory and learning, and suppresses appetite.” All great things (and it actually works)! Unfortunately, “phenylalanine can promote the cell division of existing malignant melanoma cells. If you have melanoma, or any other form of cancer for that matter, avoid phenylalanine.”

After quite a lot of research on melanoma in the past few months, I only stumbled upon this the day before yesterday (and no, it certainly isn’t on the label). I had been taking it in the hospital almost daily and took my last pill as recently as a week ago. I certainly won’t be taking any more. I had plenty left, but gave it to Damien (a professional artist) for (professionally) repainting my radiation tats, along with the above woeful tale of warning, delivered with lots of stern cautionary finger-wagging.

I mention phenylalanine specifically and long-windedly as I’ve noticed a lot of hits from wacky (and you know who you are) countries where I’m sure I don’t know anyone and expect they’re people doing melanoma research. Although my particular set of circumstances may be unusual: avoid both phenylalanine and tyrosine if you have melanoma. This information is not easily come by unless you look for it specifically. I will discuss it with my oncologist when I see her next.

Those two supplements taken concurrently, along with stress, smoking, caffeine and alcohol (not to mention all those steaks, smoked meats and beach vacations) could very well have conspired to make my body ripe for melanoma and cancer in general. Now that I’ve (mostly) eliminated those things from my life, I hope to see a dramatic turnaround ;-)

My platelets are back up to 32 as of yesterday! That’s a whopping 88% (if you had invested: PLT on the PSE) increase in less than a week! My WBC was down to an all-time low of 2.7, which had me whining and whimpering to my oncologist. She managed to calm my fears with a convincing, though incomprehensible, oration in Latin with some numbers thrown in for good measure. “Cave canem,” I said, “And a happy carpe diem to you!” But I’m off the hook blood tests-wise until Monday, when Tim Hanford (my two-time former non-college roommate) arrives for a two-week visit.

‘Kolorsuv’ – that’s how they say it in Ostravian – was an excellent festival music-wise, the often painful-to-look-at crowd and torrential rains notwithstanding; while heated arguments with incompetent (poor excuse for a) ‘hotel’ staff are always better than weak coffee to get the day started with a little bee in your bonnet. I’ll leave you with a picture of the flying bicycle, an Ostravian invention or something:

42 23 18 17...?

2008-07-10T20:00:00.004+02:00

No, those aren’t the lucky Lost™ numbers backward, that’s my platelet count(down) for the last twelve days – 150 considered the bottom end of healthy. They’re falling faster than the US dollar, but seem to have leveled off in the upper teens (maybe). I basically bleed and bruise very easily. If they go below 5, I’ll have to have a transfusion. My white blood count (WBC) was 3.3 yesterday, which is up slightly from Monday’s all time low of 3.0. More blood tests yet again tomorrow...

Hats off to Steve for nabbing the Friends karaoke concession: from 40 songs in English to over 4000 – a definite improvement. A great time was had by all and sundry. Yesterday morning, however, saw me up before six and puking in the shower, of all places, before Tom Parker (unshowered for obvious reasons) and I set off for Motol for the aforementioned blood tests and radiation planning at 7.

Radiation planning involved a lot of signing of paperwork that I didn’t bother to read and a fight between the receptionist and two old men complaining about the $1.90 doctor’s fee. I then got three large, deep purple ‘tattoos’ (the color, not the band) that make me look a bit messianic:

I will have these wild markings until the end of August – they’re what they use to align the zapper during radiation treatments. I spent about five minutes in a 'simulator' to get me used to the process or something and then had a CT scan of the relevant to-be-radiated region.

I have to go back on the 23rd for final adjustments and begin radiation in earnest on the 28th. Treatments will be Mondays and Thursdays for five weeks (ten sessions) at much higher-than-normal doses... but only twice a week, which is a relief, sort of.

Tomorrow I have more blood tests, see my oncologist for a chat and a check-up and my dermatologist for the mole(s) histology and another look-see. I’m jumping on the high-speed Pendolino with Jirka for the ‘Colours [sic] of Ostrava’ music festival in the early afternoon.

Tom Parker left this morning. We had a fantastic, jam-packed (less than a) week and so I’ve been too busy to post anything until today, sorry. A real sport, that Tom Parker, who can finally keep up with me. Here he is helping to reduce my drinking by finishing my beer again:

¡campeones!

2008-06-29T23:36:00.003+02:00

There have been some concerns of late that my posts have been a little discouraging, depressing and even downright dire. I’m neither discouraged nor depressed, just really tired of having cancer, if that makes any sense. It’s been a long six-and-a-half roller-coaster months since my first (even-vaguely-correct) diagnosis, but here’s some good news and light-hearted nonsense to prove that I’ve not given up:

Chris and I finished 4th and 2nd respectively in a 29-player poker tournament (my first) at the Hilton last night, together netting almost CZK 10K ($650) in the process. There were a lot more sharks than fish, so we were pretty lucky to get out with our shirts, let alone reach the final four.

Issues with Chinese/English mistranslations during the upcoming Beijing Olympics have already manifested themselves in the toy/tobacco kiosk at Motol. Here are just two of the tempting products on offer to sick children - dinosaurs being huge this (and every) year:

...all this from a plastic triceratops... and now for the marketing pitch - 'safety and slightly' being the keys to perfection:

And here are my top nine theories as to why I have cancer:

9. mistaken for a jumbo shrimp as a newborn and tossed onto the grill;
8. consistently failing to brighten the day of New York State Thruway toll collectors;
7. it’s currently rather fashionable;
6. lifelong suppression of internalized evil twin;
5. repeated reaching for left armpit for imaginary concealed weapon;
4. only inhaling with my left lung to mitigate the scandal when I run for President;
3. didn't cry at the end of Terms of Endearment;
2. unlucky at cards, lucky at uh, wait a minute, lucky at cards;
1. half a lifetime of poor health choices, including an almost jihadist fervor for smoked pork products, thick juicy steaks, cigarettes and coffee.

There, satisfied?

Last Friday’s blood test results were dismal (as well as discouraging, depressing and dire). While my white blood count held steady at 4.2, my platelets were all the way down to 42, which is basically hemophiliac territory. This could be a result of the curcumin, which inhibits platelet aggregation and, when combined with chemo, which outright destroys them, may make for a bad combination. I’ve stopped taking it until they’re up again – I’ll know on Friday after more blood tests.

The side effects from my last chemo session have been worse and lasted longer than in previous cycles. Over a week now since my last ‘dose’ and I’m still taking anti-nausea medication - I’m usually off it by the following Wednesday. Other than that, I'm in great spirits.

Tom Parker comes to Prague this Thursday for his second and ‘substantially longer’ visit this year, followed by Tim Hanford who will be here for more than two weeks, and then Jon Luftig who will be on and off in Prague for almost a month.

I then plan to go to Spain for about a week in the beginning of September and then off to Georgia (the country, of all places) toward the end of the month. I hope to get to the US in October for an extended visit and possible further treatment. Stay tuned. ¡Que viva el Niño, viva España! ¡Campeones de Europa!

no mo’ chemo’

2008-06-25T23:57:00.003+02:00

At least for now. I went to Motol on Monday to have my stitches out and consult with my oncologist about my current and future treatment. They replaced my stitches with some sort of greenish stinging sticky stuff – green being the common denominator somehow of all human skin tone.

I then went to see Dr. Kubáčková, armed with arguments, supporting documents, and determined to make my point(s) about (at the very least) postponing more chemo until after radiation. All of which turned out to be entirely unnecessary. She agreed with me that chemo was probably counter-productive, given my circumstances (at this point), and encouraged me to apply for the clinical trial in Seattle following my radiation treatment and a further all-body CT scan scheduled for July 24th.

She promptly cancelled what would have been my sixth chemo cycle, which had been scheduled for two weeks from now. I still have blood tests this Friday, but am now pretty free from daily professional cancer patient duties until July 9th (CT scan and radiation planning). I’m going to focus solely on beefing up my (cyto)toxically-ravaged immune system and finally losing my hospital legs.

I’ve quit smoking for good (pretty much); have (mostly) stopped eating meat and am taking a myriad (that's right) of supplements meant to detoxify my system. I’m up to a maximum of two (alcoholic) beers and one cup of coffee (used to drink a liter in the morning) a day – replacing both with tons of juice and Chinese tea. I’ve cut out most fats and sugars from my diet and will dramatically increase my antioxidant intake (not recommended during chemo) next week.

I’ll be spending more time at the pool (after 3PM - cheaper and healthier) and yes, probably taking up yoga, of all things. Any and all lifestyle/diet advice is always appreciated, but not necessarily followed ;-)

I’m really glad I got away from chemotherapy relatively unscathed. The few side effects I did have (all-body nausea, extreme fatigue, etc.) were nothing compared to what many experience. Even the hints of worse to come were scary: burning tears, vomiting in restaurants (last Sunday brunch after first three bites – real nice), for example. I’m dropping the chemo, not because it flat out sucks and was getting worse; but because it’s unhealthy and actually carcinogenic, counter-intuitive and counter-productive. Thanks.

cure for mikey?

2008-06-21T12:43:00.008+02:00

Last Tuesday’s blood results were the worst (lowest) yet: WBC: 4.1 & PLT: 109; and should have, in my (now semi-professional patient) opinion, contraindicated last week’s chemo cycle, considering I have surgical wounds that have yet to heal.

(Ukraine) Jane came with me for the first two days. We got to Motol shortly after ten on Wednesday and, as always on the first day, they weren’t ready for me (even though I had stopped by the day before to prevent this exact thing from happening) – no room, no chemo, no excuses. I had been out until two in the morning at karaoke the night before and had slept precious little. They finally got started around 1:30, finishing after six. I had them use the same vein as last time, which is now showing wear and maybe even some tear.

Thursday went much more smoothly. Here’s a picture of Jane messing around with my pump:

Mary came with me yesterday morning and Vrat picked me up. I’ve pretty much had it with chemo. It’s working(?) at cross-purposes to all my other (completely non-toxic) therapies: Traditional Chinese Medicine, curcumin, etc., while precluding others: antioxidants, zeolite, etc. – basically anything meant to actually improve my immunity.

Chemo destroys cells that multiply quickly: platelets, white blood cells (immune system), skin (including hair) and the entire gastro-intestinal tract (hence the nausea), before getting to the cancer. It’s slowly, but surely, destroying my immune system – my former, and hopefully future, pride and joy.

I’m supposed to begin my next cycle on the tenth of July, but will discuss canceling it with my oncologist. Although I do think it’s bought me some time to allow my other ‘therapies’ to work, I think it’s reached the end of its effectiveness – diminishing returns, as it were. I want to be as close to 100% before starting radiation next month. I got my first voluntary haircut since August last week and would like to keep it that way.

Thanks for forwarding the info about the recent immunotherapy success – immunotherapy (still experimental, but promising) and spontaneous remission (very rare) really being the only chances at beating this thing(s). It’s very encouraging and I will most likely apply for the clinical trial in Seattle on Monday. I qualify completely except for the “Progressive disease after conventional therapy” part – as, knock on wood, that is not yet my case.

‘Dr Cassian Yee, who led the project, said: “For this patient we were successful, but we would need to confirm the effectiveness of therapy in a larger study.”’

This ‘larger study’ is currently recruiting only 12 patients and uses autologous CD8+ T-cell clones as opposed to CD4+ [the one(s) referred to in the success story], the differences therebetween completely escaping me. It’s a Phase I trial, so they’re primarily testing for toxicity, but I don’t see how cloned T-cells can be toxic. We’ll see. More as this story develops and as always, thank you for your support.

back on the table

2008-06-13T13:01:00.004+02:00

Martha and I went to Motol yesterday for my oncology appointment and subsequent operation(s) – it was a lot of fun! Martha even managed not to yell at anybody. Wednesday’s blood tests had me a platelet away from not having the operation(s): WBC 5.1, PLT 140. In addition to the blood results, I got my prescriptions refilled: hundreds of dollars worth of medication for just a few crowns.

I complained of recent foot/ankle/knee trouble – basically, trouble walking – and she chalked it up to the chemo. I’m unfortunately in a physical stasis since chemo began (shortly after a very lengthy and sedentary hospital stay), as I have trouble growing new cells – the actual goal of chemotherapy. I’m walking (and dancing) a lot more than I was in the hospital and can’t keep up with myself anymore (or yet).

We went down the hall to the operating theater and they saw us immediately: my smiley, polyglot dermatologist in full surgical garb and her terse nurse, who spoke of me in the third-person. They removed all three suspicious ‘spots’ (arm, collar, left leg behind knee) and surrounding tissue, using five stitches total. The local anesthetic injection(s) - some sort of ‘caine - was the only bit that hurt. I made Martha watch – she said it was “pretty gross” - again, no photos, sorry. The whole thing took less than 30 minutes.

I’ll have the stitches (they itches) out on the 23rd of June and get the histology by July 11th at the latest (melanoma anyone? prostate cancer of the skin? place your bets!). I’ll probably begin radiation on the lung and lymph nodes on or around the 21st of July, following two more (and hopefully last) chemo cycles: the next to begin on Wednesday after blood tests on Tuesday.

I should be relatively free from almost daily treatment obligations by the very end of August and hope to be able to leave the country for awhile. Take the show on the road, as it were. Thanks a lot for all your motivational comments. They are very much appreciated.

up, down, turn around...

2008-06-09T13:33:00.005+02:00

I just spoke to my oncologist about my upcoming treatment, which appears to be a bit intense: I’ll have blood tests again this Wednesday before my operation(s) on Thursday; just to be sure my platelets are up to snuff. The procedure(s) itself will be rather simple and probably painful: 2 – 3 moles excised along with surrounding tissue, stitches and home. I will see my oncologist on Thursday morning just before the operation(s).

Radiation next month will consist of a CT scan on 9.7, followed by a week of planning and plotting by the radiologists to come up with the theme for next month’s blog posts. It will most likely be Monday to Friday 5x /week for a month – just like Ted Kennedy! We’ve had similar operations (they had thought I had a glioblastoma in the same spot) and treatment options.

Dr. Kubáčková assured me that the Radiology department (especially their super-duper, laser-guided, state-of-the-art equipment) at Motol is the best in Central Europe – the definition of which is still unclear to me, having seen it change so many times in the last 15 years. “Better than Vienna!” she exclaimed. Well, that’s good enough for me. Chemo will be suspended during my radiation treatment, which means that I will have two more cycles: to begin next Wednesday and the 9th of July, presumably just after the CT.

Tom Parker mentioned a couple weeks ago on the phone that I hadn’t really described what chemo was like in the blog. Well, it’s like this:

three days of getting up early, long trip to the hospital, waiting around, sitting around watching the slow drip, fading in and out of restless sleep; then:

sharp, yet dull, non-throbbing, but constant, shake-your-head unbelievable pain – it feels like someone is amputating your arm from the inside out and there’s nothing you can do about it [this only happens with Dacarbazine (and slowly fades after about five minutes) and Carmustine, which is worse, and doesn’t fade during the half-hour drip]; then:

fatigue, nausea, vomiting, generally feeling like total shit, trying to shower with that thing in your arm without getting it wet, trouble walking, dread and depression; then:

after about a week, gradually feeling better – peaking exactly at the moment it’s time to go back for another cycle.

All-in-all, a pretty shitty experience all round. I don’t find it comforting that most everyone I share a room with during the process is both older and worse off than me – I find it incredibly sad. The horror stories I've read on the Internet, however, make me grateful that I don't have it so bad.

This last cycle was one of the easiest, as they found a rare, good, solid, virgin vein – which is half the battle. The side effects, however, were much worse, as attested by the fact that I had to use four different anti-nausea medications: ranging from Tums to the aforementioned $20 a pill silver-bullet, Kytril – for which I pay only 40 cents, thanks to my ironically golden ticket state health insurance. And still threw up.

Dr. K. also confirmed Dr. Pikus’ analysis of my last PET scan. The lung tumor appears to be dying; further treatment 'should' 'eventually' take care of it.

I passed on your compliments to my cat, who seemed appreciative – judging by her toothless grin/grimace (hard to tell, really)? I have to make more tea now, as stony-faced Dr? Wang is taking full credit for my progress. If you have any questions, please feel free to ask and I’ll answer them next time. Thanks again for your continuing support.

Oh yeah! Friday's results: WBC: 5.9, platelets (PLT): 157 - both normal ranges.

and then there were three...

2008-06-01T14:40:00.004+02:00

I ‘failed’ Tuesday’s blood test for some unspecified reason. I was told to come back the following day (again) at 7:30AM to retake the exam, as if I were in a very liberal New England college. “No chemo this week,” the nurse had said. I got up and, without showering or feeding my poor cat, ran out of the house just before 7 to go back to the hospital for what was supposed to be a five-minute visit.

I had my blood test and then decided to wait around for my oncologist, who was due to fly to Chicago for a conference the next day, to find out what the hell was going on. She couldn’t see me until after 10 and then told me “Just the platelets are down below healthy levels [116 v. bottom healthy limit of 140, WBC 5.9 - down a bit, but still within the normal range], but not unsafe. We’ll start the chemo today as planned. Go over there now.”

I went to the other wing, through the maze that is Motol, and they stuck me in a room with two old men who were obviously dying. I could see, hear and smell it on them. One snored heavily while wide-awake, the other groaned loudly in pain only while sleeping. The snoring guy crapped the bed twice. Very sad.

They put my kanyla in around noon; but after Jiffy arrived and already having waited almost four hours for the chemo, I decided to take a walk outside and come back when they were ready. In the mean time, they moved me and all my stuff to a much better room, with a different, but relatively cheerful old man. Chemo started after 2 and I was there until well after 6. Almost 12 hours for a three and a half hour procedure. I returned home to a very pissed-off cat at about 7:30 PM, who had traded her teeth long ago for eternal youth and an invisibility cloak that obviously doesn’t work:

The other two days of chemo were (not as) long, but uneventful. Dr. Pikus dropped by on Friday to give me my schedule and answer some questions from the PET scan results that I had yet to find a Czech who could understand.

The bad news is that the lung tumor is inoperable: they would have to remove the entire lung :-( not something I’m particularly interested in. The good news is that it is probably dying – ‘apoptosizing’ as opposed to proselytizing ;-) The PET scan revealed no highly-elevated glucose consumption in the lung. The lymphatic tumors are slightly smaller; and there are (apparently) only two left.

A PET scan, however, only reveals tumors larger than 5mm, so it is very possible that I have many smaller ones remaining, including the core of the lung tumor, but it appears that something is working, so:

6.6 - more blood tests
12.6 - moles excised and biopsied
17.6 - more blood tests + biochemistry
18-20.6 - fifth chemo cycle, including the dreaded Carmustine
9.7 @8AM - radiation begins

I threw up yesterday morning, before my pill had a chance to dissolve/work, but am otherwise feeling OK. I’m drinking my Chinese tea, taking my curcumin and even went on a juice fast last week for two and a half days; whatever it takes. I have a funny story about Jiffy, but want to post this now, so it’ll have to wait.

Thanks again for your support!

holding pattern

2008-05-24T12:54:00.007+02:00

After a week of tests and trips to various hospitals and doctors, the news appears to be no news. Jiffy came with me on Wednesday to see my oncologist and discuss next steps. We talked about surgery and she agreed that it was a likely option, especially if we could get Professor Pafko, Havel’s three-time lung surgeon, to perform the operation. The PET scan would be the deciding factor.

Turns out I only have four tumors, as opposed to the previously-reported seven – my CZK 80K a cycle oncologist at Karlák must have been seeing double back in February.

So it was off to my PET at Homolka, where they quizzed me for as long as they could about my identity – not too long, as they only had my name and birthday to go on. They informed me that I couldn’t be around small children, pregnant or nursing mothers for a day, as I would be radioactive. “What about my cat?” I asked.

“How old is she?”
“Eleven.”
“Ah, no problem then.”

They didn’t tell me any of this last time, or at least I don’t remember. The doctor/technician was a bit of a wise-ass, and very funny in a very deadpan, straight(wo)man sort of way. I imagined the comedy team we could make as I faded in and out of sleep during the fifty-minute exam.

I saw Dr.? Wang on Thursday, who, when I told him the lung tumor had grown, barked at me for not having drunk all of my foul-tasting tea since my last visit. I had seven pins this time and bought more tea.

Jiffy and I went back to Motol yesterday to see my oncologist and get the official comparison between the February and May CT and PET scans. Doctors and hospitals generally don’t trust each other’s diagnoses in the Czech Republic - I’ve come across this a few times before. According to the radiologist at Motol, the lung tumor is ‘stable’ (no change in size) and the three lymphatic tumors may have actually decreased slightly in size. The PET revealed no further metastasis.

So my oncologist recommends more chemo – to begin on Wednesday: same cocktail, unspecified number of cycles, followed by or concurrent with radiation treatments. She sent me to Dermatology to have two spots/moles (one of which is the possible site of the primary tumor), excised and biopsied.

“The patient, who lives with his mother, is 39, and still lives with his mother.” has been replaced with “Melanoma of the lip.” which has dogged me for months now. “You don’t have melanoma of the lip!” they inevitably say, “I know,” I always reply. The dermatologist checked me over thoroughly, even checking a suspicious lesion on Jiffy’s foot, all the while babbling to us in Latin along with encouraging head gestures.

She scheduled the two excisions for June 12th and, out of the blue, asked me if I spoke French. “Mais, oui,” I replied. Then began twenty minutes of us blathering on in French, Spanish, Czech, Slovak, English, German and even a little Hungarian – most of which she speaks very well AND has a medical degree to boot. We hit it off.

I’m not looking forward to next week’s chemo or the 7AM Tuesday blood tests. I just want to get this crap out of my body as soon as possible and, scary as it is, would prefer to have the operations. Apparently, the lung tumor is too close to an important vein and the surgery would be very risky. But I guess no news is good news and I’m already well-past the median survival time for Stage IV metastatic melanoma. So, “Steady as she goes, Mr. Sulu.” The party continues: going to see Dinosaur Jr. at Akropolis tonight.

I wish Paquito a very speedy recovery from his knee operation last Thursday. Todo va a salir bien. Un abrazo.

good news? bad news? no news?

2008-05-20T23:04:00.001+02:00

Mary came over around 11 yesterday for coffee, snacks and to take me to my oncology appointment. After an hour wait, we got in to see my oncologist, who didn’t have Friday’s CT results ‘in the system’. My ‘birth number’ was changed when I got insurance and had caused some sort of compu-bureaucratic snafu.

While we waited for the results, she checked out my lymph nodes. After quite a lot of digging, poking and prodding, she said that she could no longer feel anything tumor-wise under my armpits.

Both she and Mary were very excited about the prospect that my tumors had completely and magically disappeared since I began my treatment. I, however, took it all in with a raised eyebrow, hardened and skeptical from so many recent disappointments. She saw another patient while we waited outside.

The results, but not the scan itself, came and we went back in. Not having the original CT scan from February with me, we had nothing to compare it to. She sent me home to look for it and I was to drop it off the following day.

I finally found it at home and checked it out myself. Not the best of news: lung tumor went from 26x20x22mm to 38x30x33mm. I SMSed my oncologist to let her know (that I needed a day off) and we agreed that I should come in tomorrow before my PET scan at Homolka to compare and contrast and discuss further treatment options.

"Hey! Where’s the good news?" You ask. Well, there’s been no further metastasis: liver, pancreas, kidneys, etc. are clear, but that won’t be confirmed until after the PET scan tomorrow.

I also have an enlarged prostate and a gall stone! = the least of my worries. Stay tuned.

insured!

2008-05-17T13:56:00.002+02:00

Mary came over yesterday at 6:30 in the morning to take me to Motol for my CT scan. Our first and last stop was the Foreigner’s [sic] Office, where I dropped the bomb (replete with crescendo whistle-sound, followed by large explosion sound effect) of my spanking new (as of Wednesday) state health insurance card. Kuba’s eyebrows went up past his hairline, his mouth agape.

“How the hell did you get this?” he asked.
“I have a good lawyer,” I said.

They all congratulated me and Mary and I went off to the CT scan scot-free (well not Mary really, who is of Scottish origin). We had to wait an hour, as I was supposed to drink a liter of contrast solution before the exam. The woman before me came out of the exam with four bandages, shrugging her shoulders, and saying, “I have bad veins.” I have terrible veins, especially after more than 300 holes put into them over the last four months and imagined that I would come out with at least ten misplaced injections.

The first injection turned out to be the charm, so I was relieved - I still hate needles even after all of this. They made three passes of my upper body (shoulders and chest, midriff and gut, abdomen and private bits) and I was on my way back to Kuba to pay the remaining CZK 126 left on my account, have a tear-jerking goodbye and make promises to see each other socially - he came to mikeFEST! after all.

I get the results at 1PM on Monday when I meet with my oncologist (and Mary again) back at Motol. This will decide (somehow) if I have another cycle of chemo (which I expect I will). I have a PET scan on Wednesday at Homolka, which will determine whether or not I’ve had any further metastasis. So it all comes down next week.

Now that I have insurance, I can spend more money on complimentary therapies, vitamins, crazy teas, faith healers, herbs and the like, not covered by the system. In between coverage (February 21st to May 14th), I’ve shelled out around CZK 50 000 ($3125) for my treatment, which included: three cycles of chemo, an MRI, blood tests, consultations and prescriptions. Not too bad, considering.

I’ll try to update the much-neglected mikeFEST! blog tomorrow and post my CT results and conclusions on Monday evening, depending how I feel. Until then, wish me luck...

east and west

2008-05-13T19:35:00.003+02:00

I went to see Dr. Wang yesterday, who listened to my story and stuck pins in my face and hands for ten minutes before doling out large packs of herbs and roots that have to be slowly cooked together for half an hour each day, strained, chilled and drunk. I have to go back in ten days for more pins and some eye of newt.

On the bus to Homolka this morning, I sat next to a couple of strapping, Campbell soup Utah Mormons who interrupted my reading of The Amber Spyglass (atheist children’s lit) with their spiel in Czech. I told them that I’d heard it all before, thanks, and was more interested in my book, thanks. But then I felt bad.

I’ve seen these guys in every country I’ve lived in and they always speak the local language at a surprisingly high level, are incredibly polite and friendly, clean (almost shiny), well-dressed and inevitably look like a rosy-cheeked Norman Rockwell tableau. They are the only people (except for tourists) who actually smile on public transportation.

Compared with the rest of the trash we get here, the Mormons are the cream of the crop. If I’m willing to give the stinking-drunk british stag party directions to the nearest brothel, there’s no reason why I shouldn’t be polite to these misguided cherubs. So I gave them the aforementioned compliments, but told them I still wasn’t interested in their ‘message’.

Unfortunately, the bus ride is far too long for just small talk, so the conversation eventually turned to cancer. “I can’t possibly know how you feel,” said Elder Something, “but there’s one guy who can! – Jesus Christ.” I replied: “No. You can’t possibly know how I feel; but there are millions who do and are more easily accessible. I’m more concerned with living right now than with afterlife preparations, thanks.” They were nice, I wished them luck and we parted on the best of terms.

My appointment with Dr. Klener went very well. He agreed with my interpretation of the MRI and added, “If you didn’t know where and what to look for, you couldn’t tell you had an operation.” I’ll be starting med school in the fall.

Although there was no further brain metastasis, the MRI apparently showed some sinusitis that I wasn’t aware I had. No follow-up visit scheduled, but I have a PET scan (the nuclear moment of truth) there next Wednesday.

My friends, Sonya, Liz and Henny, are coming to Prague this week and when the four of us get together, you’d better look out! I’m exhausted after mikeFEST™, but it looks like no rest for the wicked. I should have listened to the Mormons...

of MRIs and blood counts

2008-05-09T14:00:00.006+02:00

I was up at 6:30 this morning for blood tests at Motol. The results, which I just got over the phone, are as follows: white blood cells 6.3; red blood cells 4.44; hemoglobin 14.0; and platelets 199. So all my numbers are back up and well within the healthy ranges.

I had an MRI of my head at Homolka on Wednesday. This is the worst slide of over a hundred, so comparable to the others already posted:

This is one of very few slides where you (or any other untrained eye, like myself) can even tell that I ever had an operation. Of course, I’ll have to wait until my consultation with Dr. Klener on Tuesday for the official analysis, but it looks good to me: no obvious baseballs, grapefruit or watermelon in any of the slides and the swelling has unswollen.

I’m meeting a Chinese doctor who practices Chinese medicine, of all things, on Monday afternoon. We’ll see what he has to say. I have a CT scan of my chest next Friday (the 16th), which should reveal any progress or regress of my remaining seven tumors. This will decide whether or not I will have a fourth chemo cycle, although I have no idea what the deciding criteria are.

On the whole, I’m feeling very well despite the time-consuming responsibilities and obligations of mikeFEST!™ (already in progress). I had a great week with Christine and am really glad she made it out. Between chemo, entertaining a house guest, and running a 12-day festival, I haven’t had much time to write. Thanks again for your comments, advice, and most of all your presents... uh, I mean presence ;-) Here's a picture of Christine in the hospital:

happy mikeFEST!™

2008-05-02T16:30:00.001+02:00

Christine arrived on Saturday to a spectacular lesbian wedding in my courtyard and (eventually) some four-hour, four-cheese fondue that I spent most of the day slaving over (mostly just stirring).

My blood results from Monday were a little disappointing. My white blood cell count is down to 5.2 (low end of healthy), while platelets are up to 177, so I guess I can shave now. Everything else has remained steady. Here I am as the spitting image of Michael Moore:

Christine came with me to the hospital for all three days of chemo and seemed to enjoy herself sleeping on the communal table. The third cycle wasn’t so great. It really burned this time and I found myself writhing in pain often. I threw up five times on Wednesday, but am feeling a bit better now. I’m really glad it’s over and hope that I don’t need another cycle. My expensive, state-of-the-art tests are all this month, so I should know where I stand before June.

But it’s mikeFEST!™ already and I’ve got a very busy schedule lined up. Please visit: http://www.xeno.cz/ click on the poster, and check out the blog. I’m keeping them separate ‘cause cancer ain't got no place in mikeFEST!™

up for the count

2008-04-24T23:04:00.002+02:00

It’s been a pretty good week both health and otherwise. I even managed to forget that I had cancer for a few hours. Well, not in a row, unless I was sleeping.

All my stocks are up: white blood count - 8.7, which is actually at the high end of normal; RBC is up slightly at 4.65; hemoglobin 14.4; and my platelets are back within the healthy range (albeit toward the low end of the scale) at 160.

Friday was fun. I was out past four and had a FishMac™. I went to Karaoke on Tuesday and did an abysmal rendition of Total Eclipse of the Heart - pure torture. Lucky for me, some bozo latecomer attempted it just after I brought the house down with U2’s With or Without You. I was thus redeemed.

The Jehovah’s Witnesses stopped by the other day. I can never seem to get rid of them over the intercom and, not wanting to toss my keys down or give them the building code, I went downstairs myself. Hat off and in my boxers – not even my closest friends are accorded such courtesy.

I found their talk about the end of the world strangely comforting this time around, but chalked it up to schadenfreude. I told them I was a priest in a church that didn’t believe in God (true story) and they seemed cool with that. I told them I had cancer and they gave me a little book with pretty pictures and indicated the relevant chapters.

It was then that three sweet old French lady tourists excused themselves past me and I wished each and all a very good day in their respective languages.

My friend Christine is coming from New York this Saturday. She’s bringing curcumin and catnip among other treats. The catnip is actually for my cat and not an herbal remedy for me, although I’ll try just about anything at this point.

These past couple weeks since my last cycle have flown by and I’m dreading the chemo next Tuesday, but mikeFEST!™ officially begins next Thursday with Chicken Day on Petřin Hill and I’m really looking forward to it. I’ll be going straight there from the hospital.

scratch that, reverse it

2008-04-18T17:50:00.002+02:00

Looks like I had most of it all wrong in my last post. I got up shortly after six this morning and promptly puked my guts out – so much for nausea ‘under control’. Just some rice noodles from some crap Chinese ‘bistro’ I had the night before. If you’re hungry two hours after eating Chinese, why does it take so long to digest? I wonder.

I got to Motol shortly before 8AM and was immediately next, which sure beats waiting. I’ll be arriving at 8 (when they close the gates, allegedly) from now on.

Apparently, I didn’t know exactly where my tumors were/are. The afflicted lymph nodes are about three inches North from where I thought they were. My oncologist checked me over good and proper and said that the ones in the lymph nodes had not grown in the month since she had checked me last. I guess even people with aggressive malignant cancer can suffer from occasional bouts of hypochondria. Good news!

She scheduled a PET scan for May 21st, which will be the real moment of truth. She also prescribed some cheaper anti-nausea meds, Torecan – the ‘morning sickness’ pills Gail had given me before.

I moved my next cycle up a day, so as not to interfere too much with this year’s 26th annual mikeFEST!™ celebrations. I begin the third cycle on the 29th with blood tests on the 28th. I got home around 10:30 today and was going to have a quick lie down before Larry King at 11. I was supposed to call in for today’s blood results between 1 and 2. I woke up at 3. I’m sure if there were something seriously wrong, they would have called or e-mailed.

Comparing the last two CBCs, there has been a serious drop in my white blood cell count, but it’s still within the ‘normal’ ‘healthy’ range (4.0 – 10.0): 11.3 (March 28) to 6.8 (April 8) – glad I started on the high end. Both red blood cells and hemoglobin remain steady, but ‘platelets’, which are somehow also important, have gone from 254 to 131 (healthy range is 140 – 440). I have no idea what any of these numbers mean.

I now have a full ten days off before returning to my job as a cancer patient. I hope to use this time more wisely and productively than I did this afternoon. But it’s Friday and I’ve had a long nap and am ready to paint at least part of the town the color of my choice.

ginger peppermint smoothies

2008-04-17T17:09:00.003+02:00

Just finished the last of my latest batch of ginger peppermint (with 11 fruits, herbs and spices) smoothie, which not only settles my stomach, but is a lot healthier than fried cheese and smoked sausage. Thanks for the tips!

I had two castings for commercials in the last couple weeks and, to end the suspense, I didn’t get either. The first was for a Dutch non-alcoholic beer called ‘Bavaria’ of all things. I was supposed to be a Dutch band manager, encouraging my Dutch band (is there such a thing?) to ‘Letsh get sheeriush’ - apparently by drinking non-alcoholic beer. I made the mistake, in retrospect (six hours later), of telling the casting people I could do a Dutch accent. I should have known, from my own experience, that, while non-Dutch people find my Dutch accent quaint, spot on and hilarious, the Dutch tend to get insulted and storm off for some reason.

Fact is, I (used to - up until the casting) drink a lot of this particular beer: averaging four tallboys (two liters) a day and, from my own meticulous market research, made up about 25% of their Czech sales – the other 75% being mostly tourists who think Bavaria is in Holland or that 0.0% must refer to the sodium content. Importing Dutch beer to the Czech Republic is worse than ‘carrying coals to Newcastle’; it’s more like taking buckets of your own piss with you on a hike.

The second was for GE Money Bank. Now, although I don’t bank with them, because of their ridiculous and redundant name, lack of convenient branches and outrageous fees, I was game to play the irate bank customer in their commercial. I was actually pretty irate after waiting for three hours and didn't need to act it. But no. If I can’t convincingly play a non-alcoholic beer drinker or an irate customer, I think my formerly promising acting career may come to an end before it’s even started. Leason learned: you can't pull the cancer card at a casting :-(

Had a bit of a scare last week before my second chemo cycle began. When you feel a lump somewhere and think you might have cancer, it’s a lot different than feeling lumps in the exact spots where you know you have tumors. I even thought I could feel the one in my lung. Mind you, I have never been able to make any of them out in any of the scans or X-rays and could therefore enjoy a bit of denial. Actually being able to feel them for the first time (and they were painful to the touch) was depressing to say the least. That’s pretty much subsided now, but I’ll ask my oncologist about it after my blood work tomorrow morning.

The nausea is under control for the time being, my hair is coming back in slowly but surely before it gets a chance to fall out - you may have noticed, I’m celebrating with a beard. I am, however, very tired, very often and trying to save my strength for mikeFEST! and all that that entrails. Thanks for all the comments, calls, e-mails, advice and support - again, they mean a lot, even if I don't get back to you right away. No picture this time - my hair’s a mess ;-)

where i'm calling from

2008-04-12T16:10:00.007+02:00

Sorry for having gone AWOL this past week, but as Jon mentioned, I’ve been in chemo - my second cycle out of three or four. I originally started writing this by hand from my bed in the Women’s Ward on Wednesday after a three-hour wait. I guess they decided to upgrade me to make up for it, as the next day, I wound up in a beautiful private room with a view, a proper desk, lazyboy armchair, nice stereo and a flat screen television! Excuse me for a sec while I grab another carrot juice from the mini-bar...

Here’s a picture of me in the Women’s Ward. They pour the chemo directly into my head:

Just kidding. That’s just some pole they have on every bed to bang your head against.

Thursday was the three-month lunaversary of the beginning of this nightmare and it seems like it’s been three years. Yesterday was two months since the brain surgery and it feels like two years. Do I see a pattern, an algorithm?

When I brought the results from my first MRI to the neurologist, just hours after the exam, she popped the CD into her computer and we looked at them together. When we got to the giant tumor bit, she gasped, then grabbed and held my hand, which is what I needed at the time. It would have been obvious to a child that the baseball didn’t belong there and that it was very serious indeed.

I asked her, “Am I going to die?” and she said, “I don’t know.” A couple people, out of the few I’ve told this story to, found her reaction ‘unprofessional’ – I certainly did not. Had she reacted in any other way, I wouldn’t have trusted her or believed a word she said forthwith. Her reaction was honest and human and a helluva lot better than smiling broadly and saying something like: “We all gotta go some time. Hell, I could walk out of this hospital and get hit by a truck!” or some other asinine, pithy, pointless pleasantry you might hear from an American doctor.

As it happened, I was almost instantly prepared for the worst: resigned, resolved and ready to die, if it came to that. I had a Will and Power of Attorney drawn up in a matter of days and let people come over to get their books back (and then some!). In many ways it made the first two months much more tolerable, although my six-week long panic attack may have belied my true feelings. After the miraculously successful operation, though, I’m not so sure, not so confident, not so prepared. If you know what I mean.

But so far, so good after the second cycle, although it burned a lot more this time going in. Blood tests next week and the third cycle begins on the 30th (mikeFEST! Eve). There are only twelve slots left in the events calendar, but the MC position is still, sadly, vacant. Any takers?

mike(AT)xeno(DOT)cz
(+420) 777 352 024

lookin' up maybe

2008-04-03T15:21:00.007+02:00

I had a single ampoule (sp?) of blood taken last Friday at Motol, as opposed to the usual eight, for a CBC (complete blood count) and then went to see my oncologist. She was very impressed with my progress, or rather lack of serious chemo side effects, that is, and said I probably wouldn’t lose my hair after all.

She prescribed the Kytril (pack of 5), which turns out to be CZK 300 ($19) a pill, but I didn’t fill the prescription for the 1500 obvious reasons. I can think of better ways to spend 1500 crowns. It’s incredibly effective, but works only by tricking your brain into thinking you’re not nauseous. I have a problem with that concept, as well as with the cost, and will wait until I really need it (or insurance pays for it, whichever comes first) to fill the prescription. That said, if any of the new baby boom mothers have any leftover morning sickness pills, I’d be much obliged.

The blood count came back normal, so I’m on track for my second cycle on the 9th (next Wednesday) with another blood test scheduled for Tuesday morning at 7. I threw up again Saturday morning, but the nausea wasn’t as bad as the first time. I tire fairly easily these days and am all the way down to the energy level of a normal person ;-) - I only go out every other night.

Jon left Saturday morning after a really fun week. I had a great time with both Jon and Tommy and am very glad they came. I’ll let them comment themselves to put future visitors’ minds at ease that I'm not a tyrant ;-) Jon even got into the ear candle thing:

It looks like my triple-play treatment at Motol will be one tenth the cost of the proposed mono-chemo at Karlák. It’s the difference between paying $8 for a hamburger and $80 for one third of that same $8 hamburger, like in a French restaurant. Who the hell would pay $80 cash up front for a third of a hamburger? Not me. The Dartmouth Regime(n) has an 18% success rate, compared to 13% for DTIC on its own.

My former insurance company, Slavia, paid the outrageous (but finally materialized) Karlák invoice, so maybe they’ll get off my back now. I’ve had a fair amount of translation work and even a casting this past week. The paresthesis (slight tingling) in my hands goes much more often than it comes. Shiner’s completely gone and my arms have healed up nicely - on the outside at least. I think some of the chemo leaked through my pin cushion veins, as I have a burning sensation in several places in my arm. But things are sort of looking up and it looks like they may have finally removed that “cosmic ‘kick me’ sign” [Mary came up with that] I’ve been wearing for the past few months.

I don’t know who came up with that ‘no calls, no e-mail’ crap, although I think it might have been me. It’s just me and my cat right now and I wouldn’t mind hearing from some of you from time to time :-) So don’t hesitate to get in touch. If I don’t answer, it either means I’m asleep or at the movies or most likely both. I should have more time as I wrap up some of the bureaucratic bull I’m currently knee-deep in.

That said, it looks like I’ll last the month and then some, which brings us to this year’s MikeFEST™: I’m looking for volunteers for individual days and nights, as well as an overall MC. Before getting too excited about the coveted MC title, please realize that:

it’s a thankless job

you would have all of the responsibility and none of the authority

no one has ever done it twice for good reason

I’ve lost friends over this, so you can either be someone I don’t really care to lose or just someone above that sort of nonsense

you will make mistakes and I will yell at you, but I will eventually apologize, provided you apologize first ;-)

Just kidding - it’s not that bad and I’ll have bigger things to worry about. I’ll leave you with a kitsch picture from this year’s Matějská pouť :

Yes, that does indeed say 'WARM HE' and although this bear(? dog?) was by far the cutest prize available at this stand, plus points for correct spelling; points off for not making any sense whatsoever. Try to choke on this one:

add nauseum to the list

2008-03-28T02:25:00.006+01:00

Sorry about the lack of posts, but I’ve been pretty busy, slightly nauseous, and fast asleep. Friday I completed my first chemo cycle and was feeling pretty good - until my anti-nausea medication ran out that is.

Easter Sunday saw us out at Jirka’s house in Mokropsy (‘Wet dogs’) for one of his great parties. Even the hail storm couldn’t dampen our spirits or gerry-rigged grill. The eclectic mix of non-traditional foodstuffs and people was almost magic. And the late-night, riverside, blind man’s bluff in the mud was both especially memorable and fairly dangerous. Here’s a picture of Damien, Jon, František (the dog) and Kyle skipping stones and hunting for mushrooms or whatever Czech dogs do on sandy beaches:

So I spent some of Monday morning throwing up a thankfully, by then, empty stomach. It wasn’t anything Gail’s morning sickness pills couldn’t handle though. I’ll get more Kytril tomorrow when I see my oncologist after another round of blood tests at 7AM at Motol.

We went to karaoke at the Blind Eye on Monday, as it will probably be my last opportunity for quite some time. Not that I’ll be too weak to stand or sing, but you need a superhuman immune system not to catch something from that filthy microphone and I’m afraid mine won’t be up to snuff in future. I did “Night Shift” just for kicks, “Your Song” ‘cause it’s actually my song, and a duet with Gail, which will remain nameless, so as not to upset Ann before her wedding this Saturday.

Apologies for the orange scare: Jiffy was right – that picture was, in fact, ‘photoshopped’ and I’m not really orange (which should have been obvious even to the ‘untrained eye’) - I just thought it looked more artsy that way. That thing about Susan Dey, however, is 100% true, as attested to by several former child actors and TV guys on E!

I’m off both the sleeping pills and the cortico-steroids now. I’ve gone from an average of three hours’ sleep a night to ten, which although preferable, is an indication of my chemo fatigue. Other than that, the occasional nausea and what are, hopefully, phantom pains, I’m handling the chemo pretty well I think, but it’s early days yet.

I've got to get up in three hours to get ready for my appointment, but I'll leave you with a picture of my ten-year old, toothless, neurotic cat, Šlupka (‘potato peel’), who is both a great comfort and a royal pain in the ass:

chemo chameleon

2008-03-21T09:12:00.009+01:00

I went back to Homolka on Tuesday to see Dr. ‘golden hands’ Klener. This time I wasn’t a nervous neurotic nutcase, so we managed to have a coherent and productive conversation. He seemed pretty pleased with my progress and finally proud of his work. He even called my oncologist to discuss my case with her directly. I have another MRI scheduled for May 7th and another visit with Dr. Klener on May 13th to go over the results.

Not following my own advice, I went and hung out in the Foreigner’s Department with Pavlina, Ivana, and Terezka. We had a good chat about skin cancer and insurance.

I began my chemotherapy on Wednesday at Motol with a little surprise. Instead of the ‘standard’ Dartmouth Regime, I received the ‘classic’ Dartmouth Regime, not to be confused with ‘new’, ‘caffeine free’ or ‘diet’ Dartmouth, or as we say in Europe, ‘Dartmouth light’.

The ‘classic’ regime swaps out Vinblastine for Carmustine (BCNU) and lasts only three days instead of five. So, my first day I had only Cisplatin and Dacarbazine - book-ended by anti-nausea infusions with some Mannitol (yet another steroid) tossed in the middle for good measure. Although I arrived at 8:45 in the morning, the chemo didn’t actually start until well after 3PM.

Yesterday I had the aforementioned plus Carmustine, which really burns going in. I got there just before 11AM and left after 6PM. They changed the regime as none of the ‘standard’ drugs cross the blood / brain barrier and I could have likely wound up with more golf, tennis or even basketballs in the old noggin.

They seem to be resolving some of the financial issues, but even though I’ve already started the chemo, I still don’t know how much it will cost. Today I complete my first chemo cycle out of three or four and I feel fine. That will probably change, as the side effects don’t usually kick in until the fourth day or thereabouts. Jon Luftig should be here within the hour to save the day.

My orange color is due to massive amounts of carrot juice. Susan Dey suffered a similar fate on the Partridge Family and the tint had to be adjusted for broadcast. Saw that on E! More later.

here we go

2008-03-17T23:14:00.011+01:00

Before I start singing the praises of Motol and my new oncologist, I want to say a couple of things about Karlák. My issue with them is certainly not the doctors, but the Foreigner and Finance Departments. Having nice Foreigner and Finance Departments (like Homolka) is well, nice, but you don’t go to the hospital to spend time with Finance people – that’s what banks are for.

Although the faded glory of Kateřinská may be an acquired taste, there is a beautiful park and church just behind the hospital, which, unfortunately, I only discovered my last day there. The hospital is very central, small and familiar, and more importantly, the doctors are wonderful. Drs. Nováková, Horáková (now in building B), and Docentka Havrdová (to name just three) are overworked and underpaid. The fact that this does not daunt nor deter their dedication is a testament to their character and credit to their profession. There are easier ways of making money in Prague than working 24 hours a day, several days a week, taking care of seriously ill people.

Same goes for Svetlana, the cleaning woman:

Irina and I got to Motol at about 7:30 this morning. I delivered my pee sample and proudly announced that I had produced four liters of the stuff in the last 24 hours (they had asked me to do this to test renal function; it’s not some kind of fetish). They then took five vials of blood out of my hand, which contains the only veins left viable. When my blood work came back I was declared (yet again) "perfectly healthy" - except for the body riddled with tumors, of course.

After a quick, “How was your weekend?” my oncologist told me I would begin chemo this Wednesday at 9AM. Each cycle would last five days at two hours a pop in three-week intervals for three to four cycles - you do the math. She told me that it was the most effective (chemo)therapy available and fully expects it to work. She reassured me about many of the side effects, as my treatment will be a ‘standard dose’ of the ‘Dartmouth Regime’, as opposed to a ‘high dose’ treatment, which obviously runs much greater risk.

The first day of the cycle, I’ll get both DTIC and Vinblastine. The following four sessions will just be Cisplatin, which is a bit nasty. Here’s how they're supposed to work:

“The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division. Usually, the drugs work by damaging the RNA or DNA that tells the cell how to copy itself in division. If the cells are unable to divide, they die. The faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink. They also induce cell suicide (self-death or apoptosis).” [AKA cytotoxic = cell poison]

My oncologist is trying to work the financial aspect a bit, as I don’t have insurance and both the treatment and any hospitalization will be expensive. My insurance company paid me at least today: the month and a half of misdiagnosis that I had paid for out of pocket at Karlák. Too bad Kraut never sent them the invoice, as they seem to be in a paying mood.

I’m meeting 'golden hands' himself at 11AM at Homolka tomorrow for my first post-op outpatient follow-up, as it were. I don’t want to make an ass of myself like usual, so should probably get some sleep. I’ll have to save the Munich caper for a future, more relevant post, but here's a teaser:

Happy St. Paddy’s!

back in black

2008-03-16T22:51:00.013+01:00

"Back in black, I hit the sack,

I've been too long, I'm glad to be back"

- AC/DC

Sorry I haven’t posted in awhile, but Tommy’s been pretty high maintenance - when he wasn’t sleeping, that is. He left this morning just after 5AM and Jon Luftig comes this Friday for a week or more or something. Christine is coming in early April? Right? Great! Middletown represent! Maybe we could get Risdal, Richie, and Rajeev over here? There, I’m all wistful, misty and maudlin again...

Tuesday saw us (Tommy, Irina and yours truly) spend more than an hour trying to pay for my oncology consultation at Karlák. I finally got in to see her at about 10:20 for a 9AM appointment - not bad, actually, for here. She checked my lymph glands and was surprised that the tumors had not grown at all in the three weeks since I’d seen her last. I was surprised at her surprise, but I guess that’s good news no matter how it’s delivered.

She suggested a monotherapy of DTIC (Dacarbazine) infusions (IV) every month. Unfortunately, I had a very important meeting on the other side of town with my tax advisor / accountant, agency helping me with my visa and other interested parties (Greg and Tommy) at 11 to go over all my documents for my trip to the consulate on Thursday, so we had to run.

After the hour-long meeting organizing my red tape, we went to the notary in my building for the rest of my documents and had lunch downstairs wid da krew at the Afghani. Then it was off to another insurance company to discuss my lack of options.

On Wednesday morning we went out to Motol (with Tommy and Irina) for my second opinion. Met the oncologist almost immediately and gave her copies of all my documents and a CD with the various tests – MRIs, CTs and the like. When asked if she wanted to speak Czech or English, she said she needed the practice, which she doesn’t, so English it was!

She gave me a full oncological exam – my first, and rather different from the neurological equivalent. I was with her for almost an hour and she gave me her mobile phone number without me asking. These are plusses in my book. She suggested a combination therapy of three cytotoxic chemotherapy drugs:
Cisplatin
Dacarbazine (DTIC) and
Vinblastine (Velban)

I just took a break to check the spelling of the above and inadvertently read the long lists of potential side effects. I’m a little depressed at the moment and am going to wrap this up and do my Vodafone translation that's due tomorrow. That’s right, I’m working again!

But it looks like I’m going back to Motol – tomorrow, bright and early, as a matter of fact, for another consultation, blood and piss tests, and to go over my treatment schedule: three days (one for each drug) every three weeks for three to four cycles.

I’ll have to cover our wacky misadventures in Munich in my next post, but I quit smoking last Thursday around midnight, am still enjoying the nealko, and have developed a genuine taste for juices in all possible combinations. I’m walking more and sleeping like a champ – just hope it lasts. There’s been some demand for my contact details, so here they are:

Mike Gisondi
Karolíny Světlé 12
110 00 Prague (Praha) 1
Czech Republic

mobile: (+420) 777 352 024

And, I’ll leave you with this (CT from the 21st of February):

Healing nicely - and that was almost a month ago!

really busy

2008-03-13T12:06:00.001+01:00

Hey! Had a very busy, yet productive week this time. Off to Munich with Tommy now to arrange my visa. More on Saturday.

-m

and you know who you are

2008-03-08T19:31:00.006+01:00

My Mom and Jiffy left together on the same flight for Atlanta Thursday morning. So now I’m back to living alone and am still only 38! Thanks to everyone who was so nice to my Mom (and to Jiffy, I guess) while she was here – you know who you are! And thanks to my Mom for being here in the first place! I could write a book about that woman.

My friend, Tommy, will be here in a couple of minutes, all the way from San Francisco. I plan to do a little tribute to all those (and you know who you are!) who flew here to see me both before and after the operation in a future post. It really meant a lot to me and I expect nothing less from Tommy’s visit.

Had a huge (and delicious) five course lunch over at Ivan’s place last Sunday and will see him again tomorrow. I speak to Mirek almost every day and went to see him in Roztyly last week. I only talk to Vlad’a about twice a week, but just got an invite to Karvina for the end of the month.

I think I got very lucky with my roommates, but the bonds that form between patients that are suffering from serious diseases (like me and my roommates) and sharing the same space for a very emotional long time are pretty strong anyway. They are the only ones who really understand what you’re going through, albeit from their perspective. Which may be only one way of looking at it, but at least it’s first hand.

You take care of each other with all modesty out the window. You listen to their stories, their troubles, their jokes, and their fears. You share pills and complain about the nurses. You meet their families and friends, use the familiar form from the get go, all while crossing your fingers and ‘holding your thumbs’. It’s given me a whole new perspective on and attitude toward Czechs and humanity in general.

Tommy’s here and asleep in the living room. I’m going to get him up now, so he doesn’t pull this everyday. Gave myself an ear candle yesterday. Here’s a picture:

Thanks again for all your comments, support and advice. It’s very much appreciated – as are the care packages – and you know who you are! :-)

look,

2008-03-07T18:18:00.003+01:00

I realize that everyone is eager for me to begin ingesting or injecting (they haven’t told me which yet) poisons into my body that will likely ruin my immune system, make me sick, make me lose my hair, or (worst case scenario) possibly not work at all. I, admittedly, am not looking forward to this, but am willing and committed to begin my treatment as soon as possible.

I have been spoiled by having the best doctors in the Czech Republic. If I’m going to pay for this, I want the best oncologist(s) working on it. Oncology is best at Motol. Karlák is a dump and is giving me trouble. My GP there declared me ‘perfectly healthy’ on December 17th. That assessment of my condition cost me CZK 356 and a lot of valuable time before the Christmas holiday.

I will pay for the consultation on Tuesday at 9AM at Karlák, but will not begin my treatment immediately after the meeting. That would be stupid. I need to be able to research the type of chemo it will be, as many of the clinical trials I’m looking into exclude candidates who have had certain types. If this doesn’t work, I need to keep my options open and dying without trying is not one of them.

And I need a second (first) opinion. At Motol. Thank you for your understanding. -m

the saga continues...

2008-03-07T16:43:00.005+01:00

[I guess when she spoke to him on Tuesday in my presence and he said they would pay for everything, that didn't count as 'contact' - read on!]

Dear Ms. Krautova,

Would you please send me an electronic copy of the invoice, so I may review it with my insurance company (on CC).

Thank you,
Mike Gisondi

----- Original Message -----
From: Krautova Zuzana
To: mike@xeno.cz
Sent: Thursday, March 06, 2008 2:04 PM
Subject: Invoice 2008/ 250073
Dear Mr Gisondi !
The Invoice No.2008/250073 for the hospitalization on Neurology Department is prepared - amount CZK 115.163,-. Could you be so kind and pick it up here in my office to arrange the reimbursement. I would like to inform you that nobody from Insurance Company Slavia contacted me in this case and also our hospital does not have agreement with this Insurance Company.
In case you decided to be treated in our hospital on Oncology Department, please arrange the payment in advance CZK 100.000,- .

Zuzana Krautova
Head of Foreign Department

[no answer yet today]

week of woe

2008-03-05T23:49:00.003+01:00

The party on Saturday was, indeed, a blast and I stayed until almost midnight :-) Thanks a lot to everyone who attended! The safe word was ‘chicken’. Here's a typical picture:

It’s been a busy, yet pretty unproductive week. The oncologist at Karlák refused to see me yesterday, claiming I owed them money from before and a deposit of CZK 100K for any further treatment, including yesterday’s initial consultation. Of course, no one had called, told, or warned me that I would have to lug one hundred thousand crowns in a Tesco or (if I wanted to be cool a) Zlaté Stránky bag (as no one seemed to have the hospital’s bank account number) to my first oncology consultation.

At that point, after twelve days (granted, she was on vacation for a week), she still had not seen the histology, MRIs, X-Rays or CT scans, so the CZK 100K meeting would have been... pointless. So she sent me to make copies of everything, even though it’s the same hospital that produced many of them and certainly had all of them.

I returned with the copies and we are to meet next Tuesday at 9AM, provided I pay my (turns out to be non-existent) bill (read on!) and the one hundred thousand crowns by Friday. Chemo would start immediately following our meeting.

You know, that’s just not the way I roll. In other words, ‘Homey don’t play that’ or a simple ‘no thank you’ will do.

I went in search of the “Economic Department” (‘Finance’ for you English-speakers), which, of course, was in a different building – through the actual Faust Haus, of all places. I went to get the elusive bank info, but wound up spending some hard time there arguing my case. "We've been waiting for you," they said. So why didn't they just call me?

I asked them how much I owed them from before and... they didn’t know. I said, “Wha? Where’s the invoice? How can you expect me to pay a random amount of money? How can you expect my insurance company to pay you without an invoice?” At that point, one of the women handed me a handy, handwritten piece of scrap paper with a couple of dates on it, but without any actual numbers (like charges or amounts or something) that one could add up, like on an invoice.

I finally convinced them to call my insurance company, who had assured, ensured, insisted and swore that they would pay the entire bill for my prior treatment. The insurance guy repeated this on the phone with Karlák. And... they didn’t believe him.

So now, I really don’t know what to do. I’m trying to get a second (or rather first) opinion at Motol with Havel’s doctor, Professor Pafko, and the oncologist over there, but it’s a little slow-going and I don’t have much time.

It's late and I've got to get to bed. More tomorrow. -m

where is everybody?

2008-03-01T12:39:00.008+01:00

Just five comments since Tuesday? I realize that having a massive brain tumor, wedged and growing between my cerebral cortex and pretty important bits like speech and movement, completely removed without any ill effects is infinitely more interesting than skin cancer in my lung and lymph nodes, so I’ll try to spice up my blog posts in future ;-)

Here’s a before and after shot of the tumor and lack therein thereof:

As you can see, the tumor and surrounding edema looked like a little laughing devil of all things (MRI from January 10). The space left in the after shot (February 12 - one day after surgery) is cerebrospinal fluid that is decreasing daily allowing my brain to return to its normal, shapely self.

My not-so-fly-by-night (they have a beautiful office next to Kotva) traveler's insurance company, Slavia, cancelled my policy that was to begin on Friday, the 22nd of February. They did or will, however, pay for almost everything, apparently, up until that date. So, I have no insurance and am paying out of pocket for all further treatment until I can sort this out. I begin chemo at a monthly cost alone of CZK 50K ($3030) – 80K ($4850) on the 11th of March.

I pulled my crown out in the middle of ‘Atonement’ on Thursday night on a ‘Mike&Ike’ that Jiffy had sent in a care package a couple of weeks before. Luckily, he was sitting next to me, so I could put it in his hand and gross him out. Glad he didn’t eat it. And very glad it wasn’t one of the ‘Jaw Breakers’ he sent me. Too many MRIs and a tube down your throat during surgery can loosen dental work.

Unfortunately, I had chewed on it a bit before realizing it wasn’t a Mike&Ike anomaly, but my very own crown. I had it stuck back on yesterday at the dentist with some temporary glue, but it looks a mess. Didn’t get a picture, sorry.

My Mom accidentally hit me in the head (right in the spot) with her umbrella during an incredibly light drizzle yesterday on our way to see my neurologist. I was pretty livid, but I’m fine.

Despite those little setbacks, I feel (relatively and under the circumstances: less than three weeks after major brain surgery with chemo looming in less than two) great and am getting better everyday. My strength is gradually coming back and I’m gaining weight, as I’ll need both for the chemo. I’m sleeping about five and a half hours a night in two sessions.

I’m even having a little party today at St. Nicholas Café in Malá Strana, Tržiště 10 – same street as the US Embassy – from 4PM, if you feel like stopping by. I’ll be gone by 10PM, though. Tomorrow, we have lunch at Ivan’s house in Nusle. More on why I have such a close relationship with my former roommates and why Czech neurologists are so beautiful in future posts.

Me and Jiffy and my first alcoholic beer since January 14. Didn’t and don’t miss it. Who would have thought that all you need is a brain tumor to quit drinking :-)

yesterday... all my troubles seemed so damn close

2008-02-26T23:25:00.018+01:00

Sorry if my last post seemed a little downbeat, but hey, that’s the way I was feeling. I know a lot of people may be blaming themselves for the whole mole thing or, at the very least, shaking their heads with a “I told him to get that checked out.”

It’s not your fault. If it’s anyone’s fault it’s mine, but I’m not really blaming myself either. ‘Shoulda, woulda, coulda’ doesn’t change the past, present or the future, so let’s move on. I am going to beat this crap by hook or by crook, come hell or high water, etc., and am not against improving my chances.

The Military Hospital was 98% convinced that my brain tumor was a glioblastoma. Dr. Klener told me 80% and was saying 50/50 to his colleagues. That, along with his golden-handed reputation, made me choose Homolka over the Military Hospital. And I’m very, very glad I did. But, I digress. More on that later...

So, thanks to everyone who posted links to clinical trials and alternative treatments. I’m looking into a lot of them. When looking for clinical trials and treatment options, please avoid anything that says 'phase 1' - where they're only testing for toxicity, ‘randomized’,
‘double-blind’, ‘control group’, or ‘placebo'. If I wanted to play Russian Roulette with my life, I would buy a gun and spin the cylinder :-)

I had a pretty busy day yesterday, it being my first business day out of the hospital since January 14th. I went to the embassy. I had everything filled out and ready, but my pre-op pictures were too small. So this will be my passport photo for the next ten years:

I then had to go back to Homolka to get my RTG, MRI, and CT scans on CD to put on my server and share with other doctors and the public at large. I’m only missing the PET scan at this point. I also got a ton of papers from Pavlina at the Foreign Visitor’s Office with all my other tests, blood work, etc.

But I first went to visit Vlad’a, whom I found in great spirits and smoking on the balcony. He said he felt “reborn” and is very much looking forward to going back to Karvina by ambulance tomorrow. His new, soon to be former, roommate, Zdeněk has played Carnegie Hall. Vlad’a was not impressed, as he had never heard of it. He did, however, love the framed portrait of himself that I did.

Mom and I had lunch at the cafeteria for old time’s sake and the fact that I was late with my pills. I had two large salads with my nealko. Then it was off to Apolinářská to see Bo, Johnny and little Vinny Ceccarelli:
While we were there, Bo (who looks great BTW) got the news that she was coming home today. We were all ecstatic. Spoke to Mirek, who after a miraculous recovery at Homolka, suffered a setback where he is now, but was doing much better already. I’ll go see him tomorrow. Ah, hell, I can’t resist, yeah, I held the baby:

So, I’m out of the hospital, Ivan’s out, and Bo, Vlad’a tomorrow, and Mirek in about a week. How do I feel? Pretty good. Great, actually. I met with Dr. Nováková this morning. She gave me a full neurological exam and I passed with flying colors.

I’m sleeping better, getting much needed exercise, and back to eating more than my share. Shiner’s fading and arms are healing. Even my hair is coming back fast. So don’t jump the gun and get a sympathy cut like Vrat:

who would have done anything to get his picture on the blog :-)

back home

2008-02-25T00:52:00.006+01:00

Aside from “The patient, who lives with his mother, is 39 and still lives with his mother” bit, there’s quite a lot of real and interesting info in the medical reports I received when I left Kateřinská on Friday around 2PM. I guess Mom made quite the impression.

Looks like I have stage IV metastatic malignant melanoma, which after the little research I did over the weekend, looks pretty bad. The histology report, of course, makes absolutely no sense to me (or to anyone else I know) and needs some explaining. Mirek’s daughter is going to try to arrange a second consultation/opinion for me with an oncologist at Motol this week - she's a nurse there.

I only spent about ten minutes with my oncologist (now on vacation for the week) on Thursday, before being whisked away to my CT scan, only to spend another ten minutes with her when I got back almost an hour later. We’re to meet again on March 4th and chemo should begin on the 11th. She seems really nice and very knoweledgable and is located at Karlovo Náměstí, my usual hospital, close to my apartment. Chemo would just be once a month, but cost a fortune.

I’m going back to Homolka tomorrow to try to get all these tests and reports sent to me electronically, so I can have them translated and share them with other doctors. I'm looking for a clinical trial in the US, but found the little research I did both overwhelming and depressing.

I wanted this to be over. I wanted to write the stories from Intensive Care like "Mike vs. the Bedpan" and "Me and My Catheter," but I'm still getting over the surgery, while preparing myself for more unknowns.

I’m also going there to visit Vlad’a, who was back in the ward and already smoking on the balcony yesterday when I spoke to him. He had his stitches out today - through his nose of all places. I need to catch him before he chomps the bit back to Karvina, as I did his portrait and framed it over the weekend.

So, back at home and still living with my mother :-) and actually getting record amounts of sleep - four hours in a row last night, followed by another one and a half. It was a really beautiful day in Prague.

I went with my last Kateřinská roommate, Ivan (the guy with the strokes), Martha and my Mom down to the river to feed the swans. Unfortunately, everyone else in Prague had the same idea and all the swans were stuffed by the time we got there.

remember that mole?

2008-02-22T10:15:00.002+01:00

The one on my arm I removed myself with some string and a hair a while back? Well, that was probably the primary tumor, a melanoma, that made the baseball in my brain, another tumor in my left lung and a few in my lymph nodes. They came up on the PET (that’s a high-tech nuclear thang – Positron Emission Tomography) scan I had last Thursday and then were confirmed by the CT (Computed Tomography) scan I had this week.

So, the bad news is that I still have cancer and plenty of it. The good news is that my brain is clean as a whistle (I don’t really see how whistles are all that clean, but you know what I mean). I had an EEG (Electroencephalograph) and yet another CT scan yesterday and everything checks out.

So I’m checking out and going home. As this is a neurological clinic and my problems are now mostly oncological, there’s not much point in me being here. I’ll still have follow up visits with Dr. Nováková at Kateřinská and Dr. Klener at Homolka and should start my chemo for the rest of it mid-March.

Vlad’a beat my time out of Intensive Care (JIP) by only staying there an hour before moving to SIP. He turned his phone on and got my SMS shortly after two in the afternoon. So that’s a relief.

Last night my roommate and I listened to the Cure – “Mixed Up” twice, while the actual concert was going on just a few metro stops away. I had had to sell my ticket obviously, but it was the next best thing :-)

histology today

2008-02-21T08:32:00.002+01:00

Well, I’m back at Kateřinská, in my old room and in Květo’s old bed of all places. Everyone here was really happy to see me. My roommate is a 24-year old retired soldier who gets strokes at least once a month and little ones almost daily. He’s very nice.

Vlad’a, my roommate from Homolka is, as I write this, having his second brain tumor removed this year. I spoke to him yesterday and he was pretty nervous, as one would expect. I’m pretty worried about it as well and will call the hospital later to find out the results. He owns two blue grass / country western bars in Karvina, outside of Ostrava, and we’re planning a big party there with Mirek after this is all over.

Miluška, one of my favorite nurses here, came at 5:30 this morning to draw three vials of blood from me. Nothing came out at first, so she had to poke around a bit until she could get some.

It looks like I get my histology today at some point – probably within the hour. One thing that I failed to mention after the operation was that it looks like the baseball in my head was actually not the primary tumor. Everyone was so happy that the operation was a complete success; I didn’t want to spoil the party.

It’s going to take me a bit to digest the news, so I wanted to get this out in case you don’t hear from me again today. I'll try to write soon.

thanks and sorry

2008-02-19T22:06:00.011+01:00

Thank you everyone for all your words of encouragement, support, and concern. You have no idea how much it meant and still means to me. I feel absolutely terrible that I haven’t been exactly timely with my updates, but plan to make good on it.

Almost forty nights with less than four hours sleep, often none at all and never more than two in a row, had literally turned me into a lunatic the last couple of weeks. I long ago developed a tolerance to their anti-anxiety medication (Neurol), both types of sleeping pill (Stilnox and Hypnogen) and whatever they’re shooting in my ass at 10PM knocks me out for only about two hours. I actually had my best sleep on the operating table.¨

That said, I had my stitches (actually just one long one in 20) out yesterday. I haven't been in a fist fight, that shiner happens to all of us after brain surgery...

And my roomies, Vlad’a and Mirek, who I will miss terribly when I leave this place tomorrow for Kateřinská.

the perfect operation

2008-02-17T18:32:00.001+01:00

There doesn’t appear to be any actual damage whatsoever. At first, I felt a little tingling in my lower left leg, but the movement was fine, so I thought, “Well, he had to cut something – that’s what I would have picked.” That’s gone away already.

The swelling has gone down and they’re already lowering my corticoid medication, albeit supplementing it with others that typically follow major brain surgery. I’ll provide a full list of what I’ve been taking for the last five weeks soon.

Katka, the night nurse here, removed my last ‘kanylka’ last night. I’ve had about twenty of these hideous monsters, which they always seem to put in the most inconvenient of places.

mikey's back!

2008-02-15T21:04:00.006+01:00

Hey everybody!

Sorry this update is a bit late, but things weren’t and still aren’t exactly clear. I’ll write all about my wild adventures on the operating table and the crazy days and nights in intensive care in future back-dated posts, but people probably want to know what’s going on now:

The operation? So far, so good. Actually, it really couldn’t have gone better. Dr. Jan Klener (my neurosurgeon) truly is a miracle worker – ‘golden hands’ they call him around here. The tumor (which was actually the size of a baseball!) was probably completely removed according to the follow-up MRI, which I still haven’t seen, but will have shortly. So, before and after shots coming soon!

Unfortunately, they still don’t know the histology, meaning they don’t know what type of cancer it is or was, so don’t know what the follow-up treatment / next steps are. This could take up to two weeks. So I'm not really out of the woods yet...

I got out of all forms of intensive care yesterday morning and am back on the ward with two fantastic roomies yet again. Looks like I’ll be going back to Kateřinská next Wednesday :-)

I haven't really slept in over a month and it's taken its toll on my sanity. They're going to give me a shot in a couple of minutes, so I gotta go, but I’ll write soon. I promise :-)

post-op

2008-02-11T17:43:00.001+01:00

The operation was a success and Mike is now in intensive care and will be there for the next couple of days.

(Editors' note: We've seen him, he's awake and alert and wants to provide further details himself, so please bear with us until he is able to post.)

blog under the editor's knife

2008-02-10T21:55:00.000+01:00

Thanks everyone for all your comments on my blog! My operation is, apparently, in a couple of hours and I just wanted to take a little of the time I don't actually have to let you know how it's going to work while I'm out:

When I go under the knife, my mother (Mary) will give daily updates to Mary (Campbell) who will post them on my blog as I will be (with any luck) completely unconscious both during and after the procedure.

Mary (my mother) despite being retired and Mary (Campbell) despite her part-time job probably have more time to do this anyway.

Instead of the daily, "Mike had the operation and is now in intensive care, and doing very well, but visits are limited to 10 minutes and he probably won't recognize you anyway, because he'll be sleeping." every day. The Marys will post some funny and not-so-funny (but will hopefully seem, at the very least, incredibly ironic in retrospect) anecdotes from the past few weeks.

These will be posted according to the dates and times they actually happened - so you're gonna have to mouse around a bit if you want to read them :-)

Thanks,
Mike & the Marys

operation: tomorrow, 11.2, pre-op at 6 & op just after 8

2008-02-10T21:45:00.000+01:00

...details to follow, but I still have all my hair :-)

pre-op q&a with mike

2008-02-10T13:32:00.000+01:00

Q. What is the hardest thing about being in the hospital this long?

A. I would have to say the muscle atrophy – not that I had all that much to begin with. The doctors and nurses advised me not to carry anything, not to overexert myself – not realizing exactly how inactive I’d been before. My mother follows their orders word for word and carts everything herself from home to hospital. She won’t let me lift a finger and neither will most of my friends. It’s a little emasculating – and hasn’t been at all healthy. Lesson learned: get some exercise, if you ever find yourself in a similar situation :-)

Q. Do you find yourself being a little short-tempered with your friends and mother?

A. Indeed. Especially with my mother, because I know that whatever I do, she won’t abandon me and is in it for the long haul.

After a month of practically no sleep, waking every hour in a pool of sweat from terrible nightmares (or just ‘cause), the potentially terminal illness, and very strong medication is a pretty bad combination.

I also tend to put the ‘Mike’ in ‘micromanage’ - had I done that before all this started, everything would have been a lot easier.

Q. How do you deal with the stress?

A. This is the toughest job with the longest hours that I’ve ever had – and the rub is I’m paying through the nose to do it. But I don’t really have a choice, so I just take it one day at a time - to cite the cliché title of the 1970s sitcom.

Q. Has communication with your doctors been up front and open? Has language ever been an issue?

A. As this is my absolute first hospital(s) experience, I don’t really have anything to compare it to. But Czechs tend to be a lot less blindly optimistic than Americans, so when they are hopeful, you can really believe it.

Most of my doctors speak English very, very well. The ones who don’t, speak Czech clearly and slowly and always ask me if I understood what they said. If I’m not 100% certain of what they said, I just ask for clarification until I am. My Czech is actually pretty good after twelve years here and I love all of the compliments I’m getting.

Q. Any complaints about the care you’re getting?

A. No, but again, nothing to compare it to. My only complaint is that they don’t really give you an exact time for anything. “Chvilku” (basically meaning “just a couple of minutes”) can be up to a four hour wait. When you have to go to the bathroom, that’s quite a long time.

Strangely, the transfer on Wednesday went like clockwork - I’m just not used to that. The ambulance was fifteen minutes early, so I had to woof down my breakfast pelmeni, finish packing my bags in a rush, quick tear jerk with the nurses (who cheered me) and we were at Homolka by 7:45. Unfortunately, they didn’t have my room ready, so I had to wait until the more typical ambulance drivers showed up at 11:45 to take the other guy away.

That’s when they rushed me through a ton of forms after I had had literally nothing to do for four hours except beg to go to the bathroom and watch the SUPER TUESDAY results in four languages. Thankfully, I had already been to the bathroom (the guy who was in my room and waiting for hours for his ambulance let me) just prior to the form filling.

When I finally checked in well after noon, the woman who had denied me a trip to the bathroom for hours handed me a cup and said she wanted a urine sample. I made her wait.

Q. Is there any bright side to this experience?

A. Absolutely! As someone who places a very high value on self-awareness, a completely life-changing event like brain cancer pushes you to your very limits and really teaches you who you are as a person.

later kater

2008-02-06T06:05:00.000+01:00

Before I go off to another hospital, I think I need to say a few words about where I've been the last three weeks - my new and now former, yet potentially future home: the neurological clinic at Kateřinská 30.

The doctors, nurses, babička receptionists and the Ukrainian cleaning woman here at Kateřinská are incredibly kind, caring and compassionate and have really helped me feel comfortable and very much at home here - and I'm not all that easy to live with.

My doctor, MUDr. Lucie Nováková, is a star and an angel - actually my accolades could just go on and on and I honestly have to say that I don't think I could get through this without her.

Despite the potential progress in my goal to get the golf ball out of my head, I'm actually going to miss this place and the great familiar staff, but maybe not the breakfast...

I am, however, very confident that I'll be back here very soon for my recovery. That's the latest plan anyway :-)

transfer? operation? who knows?

2008-02-05T07:28:00.000+01:00

As of 7AM on SUPER TUESDAY morning, the situation looks like this:

I should be transfered to Homolka Hospital tomorrow morning - ambulance at 7:30AM, but they're often late or have to pick someone else up (or both), so you never really know. I have to be there by 8:30. Surgery could happen as early as Thursday 7.2 (possibly Friday) after I (hopefully get to) speak with the doctor tomorrow.

This seemingly sketchy information is the clearest I've had so far. Things seem to change every ten minutes: times, dates (I was supposed to have the operation on 21.1), hospitals (at the Military Hospital), doctors, and costs (from free to CZK two million).

The only constants are the size of the tumor, the surrounding swelling and the diagnosis. However, the fact that this type of brain tumor is supposed to be the most aggressive form around and has not grown since my MRI on 10.1 is fairly encouraging.

I will (hopefully) have more relatively concrete info tomorrow. Please stay tuned...

ch-ch-ch-changes

2008-02-04T14:31:00.000+01:00

Those who have spent time with me lately may have noticed a few changes. Here's a top 9 list:

Art Garfunkel-style lack of haircut - I'm trying to enjoy it while I still have it :-)

I'm pounding non-alcoholic beer like there's no tomorrow and actually starting to enjoy it! My favorite by far is Radegast (Birell). If you want to bring me something, a six-pack of Radegast Nealko (blue cans) will always do the trick!

The combination of no sleep, very heavy drugs (the corticoids), tremendous guilt for having dumped all this on my closest friends, the shame of accepting help, not being able to listen to the thoughtless and inappropriate crap that comes out of a lot of mouths, all along with the nightmare of a potentially terminal illness, has indeed made me a tad cranky.

I'm not e-mailing people, responding to text messages, or even answering my phone. But that doesn't mean that I don't appreciate it (maybe not the calls), I do. I hope you all understand that I'm incredibly busy at the moment and the foreseeable future and simply don't have the time.

For someone who hadn't had a shot since 2000, I now have track marks like a junkie.

I really hate myself for having to tell people who want to visit me that they can't - just because there's only so much I can take right now.

I used to enjoy repeating myself. Right now, I can think of no worse torture. That's what the blog is for.

My greatest pleasure right now is consoling people who are confronting immeasurably less serious issues. I'm not kidding.

I often play the tumor trump. You'd be surprised how often it actually doesn't work :-)

get some rest

2008-01-29T09:41:00.000+01:00

I haven’t slept more than four hours a night since this all began on the 10th, and my mother even less. It’s long started to not only greatly increase our stress, worry and frustration levels, but our judgment as well. We waste a lot of time arguing about the small stuff, the big stuff, skirting around the issues, finding fault and pointing fingers at ourselves and each other. Then I apologize profusely without actually knowing if I really mean it.

You need to have a clear head - a little harder to do with a golf ball-size tumor in the middle of it - to go through this kind of crisis. You need to slow down and take a step back, look at the larger picture and gather as much information as possible prior to making any irreversible life decisions. Seems kind of obvious in retrospect...

american embassy to the rescue!

2008-01-24T04:24:00.000+01:00

At 4:24 in the morning on January 24, my mother accidentally sent a rough draft of a letter explaining my 'medical problem' to the US Embassy's Department of Citizen Services.

The letter begins, "My son, Michael Thomas Gisondi, U.S. Citizen, D.O.B. 5/12/1969 was diagnosed on January 10, 2008 with a brain tumor..."

This was their generic response - almost 5 days later:

Dear Mr. Gisondi,

Unfortunately, we don’t believe there is anything specific the Embassy can do in your case. We have attached to this email the list of hospitals we know of here in Prague, which may be useful if you feel you are not getting proper service. We would recommend always being in close contact with your insurance plan, which also may be able to give you guidance or work on your behalf with the hospital.

Regards,
Consular Section

Wow! So that's what we pay taxes for! Funny that it probably would have been my job to cut and paste that crap to people with real and serious problems, as I was the only one in Prague (out of five - really six, but I'm not counting the girl who flipped out during the psychological section) who actually passed the Foreign Service Exam in November 1999.

sunday's service

2008-01-20T18:22:00.000+01:00

Many, in times of uncertain crisis, find their strength in a "higher power;" I find mine in the sheer beauty of life, the love and support of my friends and family and the strong sense of belonging that comes with being an integral, yet small part of the larger whole.

But, whatever helps you get through this, keeps you strong and together, will also help me.

Please feel free to contact me through this blog. Don’t worry if I don’t respond directly, just know that I got your message and am thinking of you, too. Please stay strong, positive and hopeful for yourselves, each other and for me, in whatever way you choose. That's the best support I could possibly want.

maintain your rituals

2008-01-17T09:37:00.000+01:00

That had been my first overnight hospital stay ever. With no sleep, pumped full of steroids, and not having had a crap in two days, I was eager to get back to my ‘morning ritual’, which involves lots of fresh, strong, real coffee and a couple of cigarettes to get things down there going and kick the day off.

The morning coffee served with breakfast (two rohlíky, pad of butter, jam or honey) on the ward is called ‘white coffee’ – I’m having one now as a matter of fact! It’s not bad, but it’s very weak and doesn’t really do the trick. The process for getting a much stronger ‘Turkish coffee’ (where they pour boiling water directly on the grounds and then you wait about 20 minutes for them for them to settle and inevitably have a mouth full of coarse coffee grounds after) is not really worth the effort (took me over an hour) and for some reason you can’t get it for breakfast.

I was then informed that there was an ‘automat’ downstairs for next time:

So the following day, I went downstairs, and to my surprise, the ‘automat’ was offering 12, that’s right, 12, different kinds of instant coffees, plus soup. From ‘latte macchiato’ to the ‘grand expresso s mlékem’ (my personal favorite and actually the only one I’ve tried – it’s supposed to be a ritual after all). Instant Starbucks (which we finally got here in Prague last week) in a box.

The manner of extracting coffee from this contraption is counter-intuitive to say the least. You need to select your selection to find out the price, but absolutely everything is a single price of 12 crowns, so that seems a rather unnecessary step. You then have to put your money in the adjacent candy machine, which is not actually connected to the coffee machine – they’re not even touching each other.

You then return to the coffee machine and have a random amount of seconds to lower or increase the desired sugar level (default is level three out of five, my preference is zero), before reselecting your coffee, waiting for the little plastic cup to drop (hopefully straight down) and start pouring. Any owed change is eventually returned via the candy machine after the coffee is ready. And then it’s off with my coffee for the morning smoke, just a few feet away.

tea time

2008-01-16T21:48:00.000+01:00

Mike and his mother, Mary, in Mike's room. The jug next to the flowers can be filled with tea from the urns just down the corridor. The tea is actually not bad.

check in

2008-01-15T09:32:00.000+01:00

I was taken upstairs, met my new roomie, a retiree from the Škoda factory in Mladá Boleslav named Květoslav, which means ‘celebration of flowers’. A wonderful, wonderful man. I had never met anyone named Květoslav before in all my time in Prague.

They went to take my temperature and, out of habit, I put the thermometer under my tongue. My mother made me keep it there, while Martha politely suggested, that it was probably for under the arm. I fumbled with it for about 15 minutes. Oh how we laughed!

No sleep, but maybe some lucid dreaming, a lot of sweating – bed soaked. No crap that day

the skinny on skinny

2008-01-15T09:29:00.001+01:00

Sorry I've been a little out of touch lately, but I've got a brain tumor and have been rather frantically trying to wrap things up before some pretty risky surgery. Time to face reality and weigh the options, while remaining hopeful and positive.

When I got my MRI results around 4PM on the 10th of January at the neurological clinic, the first thing I did was call my Mom. Trying to think of what to say (not usually a problem for me), I decided then was not the time for any sort of PR spin on the crisis and just came out with it. She dropped everything, was on the next plane and after several transfers, was in Prague the morning of the 11th, having come all the way from Fort Myers, Florida. John Lowe picked her up at the airport and brought her to my apartment.

We then went over to Nemocnice Na Františku, where after an hour's consultation with another neurologist, prescriptions prescribed, another consultation arranged at the Military Hospital with the neurosurgeons for Monday, and potential insurance issues looming, we called it a day.

Monday morning (the 14th), bright and early, it was off to the Military Hospital with my mother and Irina (eventually replaced by Martha), where we had a 20 minute consultation with a neurosurgeon, Dr. Netuka, who had also consulted with Drs. Beneš and Kozler. I was told to be admitted to Na Františku for observation and intense anti-edemal therapy - IV cortico-steroid treatments and other various drugs to counteract the side effects of the steroids. I was to have the operation after a week of this at the Military Hospital with the aforementioned doctors.

Upon our return to Na Františku, we were given a complete runaround and refused admission by the head of the neurology department (not the doctor I had seen on Friday, who was actually very nice) and told to take my chances at Krč. 'We voted', she blurted, 'we voted!' Her rationale for Krč (Thomayerova) was that, back in the day, when they used to handwrite your residency address in your passport, that was my last one (Prague 4) - that visa having had long expired (in 2003) and been replaced with newer ones replete with pictures, yet no addresses. She refused to arrange any of this for me and threw us out around 5PM.

As I hadn't slept in days, was unbelievably stressed and frustrated at this point, Martha made arrangements for me to go to Krč the following morning. Not really feeling very confident in the illogical rantings of a crazy woman (the head of the neurology department at Na Františku, that is, who never gave her name), I called Dr. Horáková - the original doctor who had arranged and reviewed my MRI with me on the 10th. I called her shortly after 6:30 AM on Tuesday and literally begged to be admitted to her hospital at Kateřinkská 30, part of the massive Karlovo Náměstí system that covers a large part of Prague 2. She had everything arranged in an hour and I was admitted to her hospital on Tuesday, January 15th at 8:45 AM.

virtual visiting hours

2008-01-10T19:15:00.000+01:00

On New Year's Eve, I had a neurological exam. The theory at the time was that I had MS, but I had to wait until January 10th for an MRI. They discovered what they expect to be a "glioblastoma multiforme" - a little larger than a golf ball (3,65 x 4,68 x 3,716cm) deep within the center of the left hemisphere of my brain. The 'edema' or swelling, however, was very extensive and greatly affecting the right side of my body, while putting pressure on my optic nerve and causing double vision.