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: