berlin

I’m in Berlin now at Henny & Florian’s after their spectacular wedding on Rügen Island over the weekend:


Damien and Ashley were in town until yesterday and Jirka is here until I leave in a couple of hours for New York. We had sushi on those little boats yesterday:

Having a great time here and wish I had more time to write about it, but haven’t even had time to think, let alone pack (again), so you’ll have to settle for kitchy pictures like this one:


I hope to see many of you at the Tims' Halloween Party in Brooklyn this Friday night at 224 St. James Place in Clinton Hill of all places. Until then!

encouragingly inconclusive

My twenty minute super-duper-high-tech (and insanely expensive) nuclear PET/CT exam took seven hours on Tuesday when all was said and done, but I got the results right after which were as disturbing as they were encouraging. The report starts out with “the patient (‘sick one’) with small cell lung cancer...”

This was just handed to me. I looked at it and dismissed it as the all too usual mistake. I took the diagnosis to Dr. Klener who took a pen and crossed it out, replacing it with an almost illegible ‘something something melanoma’. This is the same doctor who crossed out the ‘melanoma of the lip’ crap on one of my older documents.

They don’t call him ‘golden hands’ for nothing. I asked him to cross out the other tumors on the report, but it looks like I only get one at a time. I’m sure these penciled in amendments make their way into the ‘official’ system eventually.

The good news is that it looks like the remaining tumors have all shrunken somewhat and/or decreased their metabolic activity. “It looks like regression,” the report concludes. Nice.

That Facebook is a can of worms. I’ll get around to posting a photo and accepting all your lovely invitations of friendship forthwith. Unfortunately, I’m furiously packing for the big trip at the moment and don’t have the time to do it justice. Gotta go. Dropped Šlupers off at John and Bo’s for the duration:

arbitrary milestone

I celebrated? the anniversary of my illness on Monday as well as having lasted six months beyond the average sell-by date for those with my condition. It was a year ago Monday that I started inexplicably dropping beers downstairs during my vernissage and I can now both safely hold and even drink them again!

When they tell you that you have cancer, they (usually) don’t tell you that you’re going to die. They wait until you ask, ‘how long do I have?’ Then they look wistfully askance and tell you the average survival time for what they think you have. They might even give you some ranges and percentages, cross-calculated with treatment options and other scenarios, etc. So you’ve got that to think about, even though you probably stopped listening awhile ago.

Then they tell you that ‘all cancers are different,’ which you dismiss as a platitude (if you’re still listening), but shouldn’t. All cancers are different. They may be rogue, rowdy and rebellious, but they’re your cells after all. That’s how they manage to fool your immune system. Cancer is as personal and unique as the color of your eyes or the shape of your nose. This leaves ranges and averages rather arbitrary.

My own cancer seems to be luckily less ambitious than is the norm for its particular breed. So happy arbitrary milestone to me! The MRI came back negative (or positive if you’re a glass-full type not in the medical profession) – no current CNS metastasis. The sinusitus (that I’d forgot I had) has also improved.

The neuropathy has stabilized to the very tips of my fingers and the bottoms of my feet. It feels like I have shag carpeting inside my sneakers. I’ll get a CD of the PET/CT and various other acronyms on Tuesday, but probably won’t be able to read any of it. Results will be over the phone later that week before I leave for Germany.

Really looking forward to my upcoming trip(s) and hope to see as many of you as is superhumanly possible. Take care and thanks for the comments. Taffy, now there’s a lass from the past! Keep on rockin’ girl.

self-portraits

I cornered Klener in the cafeteria at Homolka on Tuesday (I was nostalgic for the salad bar) and explained my dilemma. He told me to stop by his office before my MRI and he’d arrange the PET/CT of my lungs/torso, before I left for the States. Which he did – for the 21st of October at 7:20 in the morning - so much for being booked out for the rest of eternity ;-)

I had the MRI at 2 and got the results on CD immediately after:

Looks pretty good to my amateur eye - better than last time, but still some swelling. I’ll have to wait until Tuesday for the official analysis. I looked at the last (lung) CT again (for the fiftieth time) and noticed some cloudiness not present in the previous one. Really, could be anything; I’m not too concerned, sort of.

I had my busted crown from February finally replaced yesterday. Looks only slightly better in my mouth than in this plaster mold:

see:

My neuropathy is very slowly, but fairly surely fading – a trend I hope will continue. I was pretty worried that it would be permanent, leaving me worse off than before the operation. I saw Dr. Wang again today for some relatively painful acupuncture and magic herbs, which may or may not be helping.

That chemo tirade will have to be postponed to a less fun-filled post, as I'm not in the mood for a tirade. Thanks again for all of your comments and words of support. I’m really looking forward to seeing you all stateside (I just love that word) very soon.

PS. It was a real mötley crüe down at the Globe at 3 in the morning last Thursday to watch Palin not answer her own list of questions, let alone the moderator’s:
http://www.youtube.com/watch?v=azaNxqfnI7c
and something else to think about:
http://www.youtube.com/watch?v=vmYqRfp6-x8
until next time...

no news is no news

Before we all beat up on Batko, we should realize that he just unexpectedly inherited hundreds of patients of all ages and backgrounds in varying states of decay, through no fault of his own. He didn’t choose to be my doctor, nor I his patient, though.

But what I think the good doctor meant by being ‘lucky to have lived this long’ was that it is very rare that melanoma IV patients respond to chemo at all and I should give it another shot. Unfortunately, he is drawing the conclusion that I somehow responded ‘well’ to chemo.

Every doctor wants to believe that their method works – it gives meaning to their lives. I had planned on publishing my own theories as to why I’ve been ‘lucky’ to have lived this long, but I won’t be as presumptuous as the doctor and that sermon will have to wait, but look for my chemo tirade in my next post (rehearsed with Greg and politely delivered to the doctor/choir a few minutes ago – I had to call).

And we are in complete agreement. He discussed my case with the other oncologists and they’ve decided that I should wait and have another CT in two months. So I asked for a PET before I leave for the States to have something for the clinical trials. He argued as to its usefulness (the little lung tumors? wouldn’t show up) and suggested something called a PET/CT that would be more effective and I said ‘Let’s go!’ and he said it was booked out at Homolka for the rest of eternity and I said I’d see what I could do.

PLT: 113 (low) WBC: 8.9 (high/normal)

I had my last cigarette (a Viceroy 100 that I got from a sweet old man) on my way to the hospital Tuesday morning around 8:45 and will not have another one – ever. Although I had cut down significantly over the last year (from roughly 2 packs to 2 smokes / day), I just didn’t think that I deserved to get better if I didn’t quit, so I quit.

I did “Save a Prayer” (before he got fat) and “Landslide” (Nicks/Pumpkins mash-up) Tuesday night at the karaoke, making the best use of my lungs while I’ve still got them. I’m sure to waste them tonight shouting at the television. Don’t miss it: 21h EST on one or more of those thousands of channels you all get now.

probably not good

Irina and I went to Motol this morning to meet my new erstwhile oncologist (mine is recovering from surgery) and get last Thursday’s CT results. That’s right, the verdict is: probably not good... maybe:

“Multiple small lesions and ‘infiltrations’ between 2mm – 4mm are apparent in both lungs.” They suspect lung metastasis. But it could also be some sort of inflammation - they can’t really tell or say. But they think it’s metastasis, they’re sort of sure (like they were about the ‘first’ lung tumor). The other lymphatic tumors are slightly reduced or the same as before. Gall bladder still in tatters, but the good news is that the report says nothing about my prostate. Yeah!

I compared both CT lung exams (July 24 & September 25) and can’t see any difference therebetween even with the fancy magnifying glass function. I’ll be looking for a second opinion, or yet again, a more definitive first.

Dr. Batko did tell me that I was very lucky to have lived this long. I’m to speak with him again tomorrow after he’s looked at today’s bloodwork and consulted with the other doctors (including my own, I think) at Motol and they come up with a plan/proposal for my next treatment, which I will most likely politely decline.

Because the really good news is that I now qualify for clinical trials! I’m just trying to remain positive. More as this story unravels...

Monogram were great last night - as always. I will be in Atlanta (ATL) twice actually in December for an hour apiece if you want to meet up for a quick $18 beer, Hunter.

the american tour

The tingling seems to be fairly steady in both feet and hands now and, it’s either gotten slightly better, or I’m just getting used to it. I am, however, having more and more trouble walking and standing for longer periods, but this usually remains unnoticeable to all but the most observant. We’re going to call it ‘peripheral neuropathy’ from now on, as that’s the name of the (more chronic) condition and fairly common side-effect of chemotherapy.

I got my ticket for the post-election gloat-boat, the “In your face, grandpa, and you too, ya cheap hussy” Express, for less than $700 (that’s like 50 crowns!) for all these imminent arrivals:

Sunday, Nov 16: San Francisco (SFO) 12:08 PM PST

Sunday, Nov 23: Denver (DEN) 11:44 PM MST
Monday, Dec 1: Austin (AUS) 10:09 PM CST
Friday, Dec 5: Baltimore (BWI) 4:23 PM EST
Tuesday, Dec 16: Fort Myers, Florida (RSW) 2:37 PM EST
Monday, Dec 29: New York (EWR) 10:56 PM EST

So buckle your seatbelts! Despite the recent ‘mental recession’, the fundamentals of the American economy appear stronger than ever: waste gas and pollute the air for next to nothing and buy lots of Christmas presents made (or at least bought) in USA.

But I progress. From October 30th to November 16th I’ll be in the greatest New York area, as well as after December 29th. I look forward to seeing all of you and your respective sundries at our mutual conveniences on any stop of the tour. That’s a pretty wide berth: you have no excuse.

I had my long-awaited CT scan yesterday morning. It took them four tries to get a working needle in for the contrast solution, so I’m back to junkie pincushion arms after a long break. I got the results on CD immediately after, but can’t find anything, nor have been able to in the past, except that my insides are a lovely shade of blue, my boxers are a little too tight in the waist, I have a strange wire running down the right side of my body and my spine is pretty straight for all my poor posture:

My oncologist, in a surprise move, is mysteriously disappearing (on purpose) for a month, or at least until after my last opportunity to see her before I leave for Germany and then the States. I’m to have blood tests and get my CT results on Tuesday morning with her replacement, Dr. Batko. I’m having some abandonment anxiety. I hope to arrange a PET scan before I leave, depending on Tuesday’s consultation with the second string.

I saw Dr. Wang today and told him about the neuropathy. He stuck ten relatively painful pins in my head, turning me into a real Hellraiser, and left me for almost an hour. I feel pretty much the same, although my much lighter wallet has put a little skip in my step.

Results on Tuesday could affect my US itinerary, so bate your collective breath until next time. Don't miss tonight's presidential debate, even if McCain does.