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.

here we go

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

"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

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

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,

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...

[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

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?

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 :-)