up for the count

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

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

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

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

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:

1. it’s a thankless job


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


3. no one has ever done it twice for good reason


4. 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


5. 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

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

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.