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:

¡campeones!

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’

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?

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

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...

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...

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!