something rotten in iceland

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

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

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

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

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?

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...?

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: