Reduce Keppra, Increase EEG

The frequency of my blog posts has diminished greatly in the past year…
but I have been very very busy with living my life and healing my body.
HAPPILY SO, I must add!
EEG
I am very pleased with my new Neurologist and have taken his advice
on reducing my Keppra intake. My first goal is to get down to only
1000 mg per day (500-0-500). All of 2012 I was on 2000 mg per day
(1000-0-1000), so this will be reducing to 50% of 2012 values.
I started the reductions mid January when I went down to (500-0-1000).
And then last week I had an EEG control to make sure there’s no side-
effects in my brainwave activity. I ‘passed’ that test and the Doc
said that I could now go down to (500-0-750). After about 4 weeks of this
regimen I will have both my regular MRT plus another EEG control reading.
If all goes well with that appointment I will reduce down to (500-0-500).
Also at that point it will also be time for my next visit to Grosshadern!

So in about 4 weeks I should have new pictures to post and new infos
(hopefully the new info will be “no change”)!!

That’s all the health news from the German / Swiss border!

|K<

Postcard from Grosshadern

When I arrived in at the polyklinik reception I was greeted with the familiar face of an attractive assistant who remembered not only me but also how to pronounce my name. “I guess there are some people anxious to see fresh pictures of my head,”  I quipped off-handedly.  The days leading up to the appointment had been a whirlwind of activity, panic, anxiety, and the all-too-seldomly-found joy of short reunions with old friends.  Quite literally “old” as I arrived in the middle of a 40th birthday party for one of the colleagues who so often had helped me out during the last few years.  And I certainly wasn’t one of those bringing the average age of our table DOWN.  Admittedly it’s generally not a good idea to go on an all-night beer bender in Munich the night before a routine brain scan… But I hadn’t been out with friends much since I moved away from Munich last April and I was admittedly starved for attention, curious for news of their adventures, and thirsty for Bavarian brews.  They also happened to be my old foosball buddies, so we did have to go haunt our old ball-halls.  I made it to the bed and breakfast well after 3am (but only because the bars close so early in Munich: were it Berlin I would have been out much later!)

 

I am currently sitting on an Inter City Express train on my way back to my apartment in Singen.  That’s right:  I reside in the Hegau region of Baden-Württemberg: the gateway to what the Germans call the Bodensee (in English: Lake Constance) my take on it: the Swabian Riveria.  I still spend most of my time in Switzerland with the sugar in my life and with my new job on the Swiss side of the border, but my new official residence is right downtown Singen.  It’s a rainy Friday and riding the train out of Munich is cramped and uncomfortable.  It used to be so easy to go to my brain checkups: 20 minutes on the subway and I was right at the polyklinik.  Now I need about 4 hours worth of trains and a place to spend the night…

 

At my last brain checkup in March I informed my neurosurgeon that I would be moving away and asked what things I should take care about… one of which was that I should be sure to have my routine MRT’s done with a 3T (3.0 Tesla) Magneto-Resoanace-Tomography (MRT) machine.  Well, as it turns out that is not such an easy request to accommodate.  He explained to me that the 3T devices deliver twice as much graphic resolution as the standard 1.5 T imagers, and that made total sense to me.  However when it came time to make an appointment for my MRT I quickly learned (with the help of a handful of doctors and their assistants) that there are NO 3T MRT’s in my region.  The next closest would be Stuttgart or Munich.  So to me the obvious decision was to arrive in Munich a day early and have the control pictures made at the same Radiologist who had been doing them all along: well—actually if you’ve been paying close attention you will recall that although I’ve been going to the same Radiological center all along, I have changed Radiologists there as one had given me a frighteningly faulty diagnosis which triggered a horrible chain of events including my oncologist putting me on Dexamethasone for 5 months and me becoming diabetic on account of it.  Nonetheless it was a good feeling to know that I had an appointment at the Radiologist of my trusting at 10:30 on October the 11th.   At 7am that selfsame morning my mobile telephone rang (about an hour before my alarm should have gone off) when a VERY hung-over me answered the phone in a raspy and clearly still asleep tone of voice he heard a mousy radiology assistant on the other end apologizing that the Radiologist would not be able to honor my appointment because the 3T device was broken.  However she said that they have a second practice in another part of the city and they would be pleased to honor my appointment at the same time as my old appointment and she told me the address.  To which I replied that I was in a hotel room and had nothing with which to write and that I came to Munich explicitly to use that machine and I was pretty damn put out!  She then offered to send me the address via Text Message (SMS) and I went back to sleep for an hour.  When my alarm went off an hour later the first thing that I noticed (after the dryness of my mouth) was that I still had not received an SMS.  Curious.  So I called the number back and got no response: double-curious—had I dreamed the whole situation?  What is going on?!  I lay myself back down again after a glass of Bavarian tap water.  I remember thinking to myself that it seemed only natural that Bavarians were the first race to invent aspirin when my phone rang: it was the Radiologst’s assistant again.  I told her that I still hadn’t received an SMS and “since you are re-scheduling my appointment anyway, wouldn’t it be possible to make it in the afternoon?!”  She said she would find out and call me back.  After another water I lay myself back onto the soft single bed in the Bavarian countryside.  When my phone rang again 20 minutes later the Radiology assistant confirmed my new appointment at 4pm in Harlaching. I then slept right up until checkout time and had strange dreams of  interacting with disturbed (and/or disturbing) natives in Bavarian country homes as well as a deranged german taxi ride through Madrid via Fairmont.  My emotions and imagination were running wild.   I skipped the breakfast part of the bed and breakfast in lieu of a hot shower.

 

My feet have been giving me trouble again.  Every year in autumn as well as spring I come down with a hefty case of domodrosis (STINK FOOT) and this year is no exception.  I change socks every couple of hours and use foot deodorant and change shoes and buy new shoes and take foot baths and use foot creams and still I have this trouble.  It’s embarrassing and it is also not un-painful.  Due to this issue I decided to wear my “good” black leather Bass shoes to Munich.  They are comfortable and hadn’t been worn in quite a long time and look sharp too.  And obviously I did quite a lot of walking in Munich.  After I left the bed and breakfast in the countryside I walked  15 minutes to the S-bahn and rode in to Marienplatz where I planned to have lunch at the (IMHO) best Bavarian café of the Bakery ‘Rischart.’  On my way up their spiral staircase I twisted my left ankle.  At the time I didn’t think anything of it, just hopped up the stairs and had a wonderful autumn salad of chicken breasts battered in pumpkin seeds with a pumpkin seed oil dressing.  It was all of Bavarian proportions so I knew I wouldn’t be hungry for quite some time (and I was right).  I had dumped all of my things in a locker at the train station, so I was free to roam about the city without any baggage or such:  it costs me 3 euros to re-open the locker and I did that about 4 times over the course of the day to either get my keppra, deposit my purchases, or get my house-warming bottle of Swiss (Dichter Wii) wine for my Thursday night Hosts.   What I hadn’t paid any attention to however; was that I had actually given my ankle quite a good twist, and it was starting to remind me of that fact: every block I walked it started to complain even more.  By the time I came out of the Radiology appointment I was quite plainly limping.  Ouch.

 

After doing my final shopping at the Obletter (MEGA) Toy store at Stachus, I hailed a cab and gave the cabbie the address which I had (finally) received via SMS.  I knew that the practice would be in Harlaching , but it hadn’t occurred to me that I had been there before until the taxi dumped me out.  It was the very neighborhood my family had rented a holiday apartment in two Christmas’s ago…  right there!  How strange.  Memories and emotions started flooding my senses.

 

I entered the modern and spacious clinic and found the Radiology practice in the basement.  I was cheerily greeted by the red-and-white uniformed assistants and filled out the appropriate paperwork and signed the usual disclaimers.  I recognized some of the technicians from the other practice, so I felt rather at home.  I then asked the receptionist if the 3T machine had already been fixed, because I came the whole way to Munich just to use it: would it be operational tomorrow?  It was then that she informed me that there is a bit of a tense situation between the two radiologists who share that practice (and that 3T machine) and that until there differences were resolved, it doesn’t look all that good.  This was a bit disturbing to hear, but didn’t surprise me all that much: after all I had been a patient of BOTH those doctors and know full well how bad the other one is (and arrogant too!).  So I sighed and said something like “what a shame” and took a seat to read a stock waiting room magazine. I had arrived about an hour early, hoping that they could slip me in before my appointed time and I was right on that hedge.  I was in and out of that tube before 4 o’clock and the technician brought out my pictures to me and declared my condition to be stable and briefly apologized that the doctor wasn’t going to have time to consult me.   That was quite fine with me anyway: I gladly took the red envelope and shiny new CD Rom and waltzed into the basement hallway where I was confronted by many posters and handouts (flyers) for Biofeedback therapy:  hmm…  I need to start getting back into that business again (it’s been a long time!)  swoop-di-whoop I was out the door and skipping up towards the next subway station: Wettersteinplatz (my family would recognize this one well! Except that it wasn’t covered with snow nor was it raining).  I strolled (er, LIMPED quite leisurely) enjoying the autumn air and slight reprieve from the rain.

 

I sent out a quick text message to my friends who offered me a place to sleep for the night that I would arrive between 7 and 8 and will have already had dinner (not wanting to impose myself any more than I already am) and am bringing a nice wine from Switzerland… It was very nice of them to offer me a bed for the night: they live in Großhadern so it’s just a hop, skip and a limp (remember my ankle) to get to my brain checkup.  I then took the tram to Viktualienmarkt and had a proper Bavarian dinner of 4 (FOUR!) grilled wild game (venison) steaks served over pumpkin mousse, with potatoes gratin and steamed vegetables (and a couple of beers to wash it all down.)  Man was that good.

 

Not wanting to schlepp my all of my luggage with me all the time, I had gotten into the routine of stopping by the train station and just grabbing what I would need for the next leg of my adventure.  The previous night (upon arrival) I just put a toothbrush in my pocket, plus a change of socks and underwear in my raincoat pockets: very discrete…  in the morning at the bed and breakfast I just threw away my stinky old socks and dirty underwear (was ugly anyway) and casually walked out like nobody’s business.  But tonight I needed a bit more, including my medical history and a proper change of clothes, but I managed without having to drag my entire suitcase (whilst limping) across the city.  It was a great relief to have both my anti-perspirant and my foot deodorizer with me…  man do I feel old!

 

The last leg of the day was a half-mile walk from the subway to my friends’ house and admittedly I was limping very badly the whole way: it took me a good 20 minutes to make that last bit.  Upon arrival I was glad to be warmly welcomed by my friend and his wife and was relieved the embarrassment of not remembering the names of their three children in that the kids had already been sent up to bed <whew!>  We then spent a wonderful (and quite jolly!) evening drinking Dichter Wii and eating very nice cheeses (Obergeiler amongst others).  We hadn’t seen each other since long before I left Munich and since then we both had changed jobs and had PLENTY of life changes behind us: but in all cases things were looking much better for the lot of us and we thoroughly enjoyed each others company right up until midnight when all (at about the same time) of our carriages turned into pumpkins.  As my brain checkup was scheduled for 12:30 the following day (Friday) I announced that I would sleep in late: and off I went (crash: snore: OUT).

 

As I stare out the window of the Regional train (last leg to Singen) I think back on the events of this day and struggle to hold back my tears.  Over breakfast this morning my hostess (just back from a root canal) asked me what I had in store for the day and I told her about the people in the waiting room of the neuro surgery clinic.  The scared faces, nervous ticks, family panic, held back tears, and squelched terror.  And then I remembered how it was my first time there… how I spent 6 hours waiting to see the professor (my family too!) and how a nice woman there recognized my fear and my discomfort and re-assured me, telling me that the professor is the guy who wrote the book on brain surgery and that patients from around the world pay good money to hear what he has to say.  It made me feel a bit better about my situation, braved me up at the very least.  I told my hostess about this and she smiled: then I said—well, I guess today it’s my turn to be re-assuring to the other patients there: I’m in no hurry and am prepared to spend the afternoon waiting around anyway.  She smiled and gave me a hug and wished me all the best before I limped and gimped my way through the rain to the subway station.

 

And I did recognize immediately after handing over my paperwork and new pictures to the reception: the tension was running high in the (only half-full) waiting room.  You could cut a knife with it.  It was bad, worse than I had ever encountered.  It wasn’t even five minutes before I had to butt in and change the mood: I could not have withstood it for hours on end…

 

There was a grumpy old man in the waiting-room, I’ll refer to him as the dignified bastard and he was there with at least one son: a slick dressing ,BMW sportster driving, full-of-himself (learned from his father) type of snotty arrogance—imagine a Bavarian Robert Downey Jr. I will refer to him as son of dignified bastard.  These two apparently had an appointment with the professor a few hours ago (it was now 12:30) and were very loudly and very rudely badmouthing the whole polyklinik for WASTING THEIR TIME (of all things!).  They were being pushy and loud and pestering the other patients about how very unprofessional everything is and how they had AN APPOINTMENT and how they’re time is worth so very damn much and and and and…  just making everybody feel very uncomfortable (especially me).  It was at this point that the lady sitting beside me turned to me and said something like “So I guess it’s safe to assume that all of us here have something wrong in our heads, no?”  (quite an icebreaker really—though a bit hard to use in any other context).  My response: well, Friday is brain tumor day at the polyklinik so I think it’s safe to say we’ve all got something foreign inside us.  Then she asked me how long I had been waiting… which at first I found to be a very odd question because she just five minutes ago saw me walk in and ask her if the seat next to her was free and if I could sit there!  So I said that I’ve only been here for about five minutes, but quite honestly things have gotten A LOT better in terms of waiting room time since a few years ago.  That last bit I said quite loud so as the dignified bastard could hear me.   The nice woman across from us also then leaned forward and confessed to having a tumor and asked how bad my condition was.  I told her about my anaplastic astrozytoma and the lady beside me asked WHERE in my head the tumor is located.  So I said that it was right frontal, to which she asked: “what does that area control?”  I said I wasn’t really sure but maybe linguistics and motor control: but actually my case isn’t all that bad, so I have no such symptoms. She then said “I’m on my third tumor and this one is on the left frontal lobe: that’s short-term memory and mine’s REAL BAD!”  She then asked me if I have a brain tumor too (no joke).  At that point the woman across from us rolled her eyes.  After all these theatrics everyone in the room was paying attention and no longer having to painfully endure the whining and bitching of dignified bastard and son of dignified bastard: this was what I was waiting for.  I started my speech and turned to the lady with three tumors:

 

“Well listen friend, you have to keep all of this in perspective, right?  I mean even if you’ve been sitting in this waiting room for four hours, you still haven’t waited as long as I have had to travel to even be here.  I make my way here the whole way from Switzerland just to have audience with these doctors: they are hands-down without a doubt the worlds most renowned doctors in the field of neuro oncology and brain surgery.” I was fudging facts a bit at this point, but it was a pep talk, not a university lecture: I then said, “All of the members of my family are doctors in the USA: In Philadelphia if you’ve ever heard of that place.  And when I fell ill I had the opportunity to fly back home and be treated there, and that’s when all my family asked all of their networks WHERE in the whole world is the best treatment for brain tumors: and every member of their professional community responded with a resounding ‘München Großhadern!’ and then my family flew over here to be with me.  And even now that I have to travel so far to be seen by these specialists, I do it gladly: knowing with full confidence that I am in the best possible care in the world!  These doctors take time for each and every patient, explaining over and over again the possibilities and the prognosis: they have NEVER shuffled me out the door and said something like ‘WE HAVE A SCHEDULE HERE TO ADHERE TO!’ – NO, they take their time and walk you through the situation: and that is EXACTLY why I feel comfortable here.  I am not only comfortable with the quality of care I receive here, I am PROUD to be able to be treated by the most respected doctors in their field, and damn happy that they take as much time as I need to come to grips with this very complex illness I have contracted.”  Then I quieted down a bit… having said my peace: and everybody in the room was glued to my every word, even if they were pretending not to or looking away.  The secretaries and assistants too noticed and gave me a thankful smile when I left at the end of the afternoon: they were the front line of attack from the angry dignified bastard and son of angry dignified bastard all morning…

 

Well, my speech had quite an effect on most of the sympathetic patients in the waiting room, but son-of-dignified-bastard had had just about enough and stormed out of the waiting room in a big huff slamming the door behind him.  It should come as no surprise to him that he impressed absolutely nobody with his theatrics…  And then one of the ladies a few seats away leaned over to me and said thank you, that she feels much better now about her treatment and wants to thank her doctors for helping her so kindly.  She informed me that she also had an anaplastic astrozytoma which was benign for years, but just recently was diagnosed with a second malignant tumor and was here for her first checkup since she started TEMO-Chemo.  She was very scared, but at the same time thankful for my pep-talk.  When she emerged from her consultation she was all-smiles and proudly announced that the TEMO was working and her tumor was on it’s way into remission.  We all (except for dignified bastard) congratulated her.

 

I didn’t have to wait very long before being called into the consultation office (maybe 90 minutes).  I was glad to see my doctor again: he and I are about the same age and share quite a few interests and enjoy each other’s company.  But first we got down to business: I apologized for the non 3T images… and he went off on a bit of a rant: about how un-professional and childish it is for those Radiologists to “hold their patients ransom” because they are not getting along.  He told me then that I should boycott the practice entirely and that we can get along just fine with 1.5 Tesla imaging and that if something comes up we will make accomodations for finding higher resolution imaging.  He was very upset to hear that the Radiology assistants had “confessed” to me that the doctors were feuding and that was the reason that I could not have proper care.  He was very angry.  I also had a lot to tell him about my new doctors in Singen: my Neurologist and how conservative he is (IMHO positively so).  The neurologist thinks that my taking 2000 mg of Keppra per day is excessive and is of the opinion that a reduction would be wise, especially since I’ve not had any epileptic nor neurological events in over 2 years.  But he (the neurologist) also believes that a Keppra reduction should be done slowly, with weekly EEG’s and with a ban on automobile driving as well.  My doctor at the polyklinik found this to be a bit excessively conservative, but was impressed.  Stressed that it is maybe a bit excessive however does not think that taking 2000 mg of Keppra is all that much (whereas I DO – after all, I’m the one taking it!!)  But he said he could support a reduction and asked me to please put him into email contact with my new Neurologist in Singen.  He finished that topic by saying that he wasn’t going to tell the neurologist how to do his job, just as he would not expect the neurologist to tell him how to do his…

 

I also informed him that I had been to a new Urologist because I have been suffering bladder issues.  Basically put: it pretty much always feels like I have to pee.  And this has been going on for quite some time (since the surgery I would estimate).  My original “gut” feeling (no joke intended) was that it was a side effect of having had an electro-catheter, and when I had mentioned it to my urologist in Munich he had dismissed it as a potential side-effect of the TEMO-Chemo and told me to come back in a year.  Well now it had been a year and I am still having this issue and so I went to the Urologist here: he checked me out ENTIRELY and shit was it uncomfortable.  OMG.  But his (very thorough) diagnosis was that there is nothing physically wrong with me, it must be neurological.  So I took it up with the neurologist who said that it would make sense to him as the frontal lobe is in face responsible for bladder control mechanics (and also the prostate and bladder medicines I’ve been taking on a trial basis are not having any affect).  So…. After explaining all of this to my neurosurgeon he shrugged and sighed… before saying “well… in my experience bladder control is in fact governed by the frontal lobes, but only one of yours is scarred or affected by the tumor and generally it is a control of BOTH lobes together which affect the bladder.  That’s not to say that it is not within the realm of possibility, he added: but in his experience it requires damage to BOTH frontal lobes together to generate a response in bladder control.”  He also mentioned that because my tumor and scarring very much occurs where the frontal and temporal lobes converge, this is the wrong side of the frontal lobe for bladder control.  So although he wouldn’t dismiss the topic entirely, he found it unlikely to be related to my brain damage.

 

We wrapped up the meeting by committing to an appointment again in February: he is wary of me taking such long intervals between brain checkups: he thinks 4 months is a good time-frame.  I agreed and we shook hands on seeing one another again this winter.

 

After I left the consultation room I went straight to the toilet (cause I had to pee, of course!) and after I had finished and was washing my hands a young guy came into the restroom and starting chatting with me.  Generally I am very against starting up conversations in the toilet and told him that I would be glad to chat with him once we had both finished our respective business and waited for him outside the WC.  When he came out we had a chat for maybe half an hour or so: he has been a patient there for 17 years and was there with his mother who came down from Hannover by airplane to be with her son.  He only comes for brain checkups every year now, so his mom comes to visit him then.  He got his brain stint when he was 9 years old: his tumor sits directly on his brain stem and is absolutely impossible to reach by conventional or non-conventional means… the only thing the doctors can do for him is to drain the fluids out of his head into his chest cavity: and this has worked well for him for 17+ years now.  He was paying attention to my little speech earlier and just wanted to make friends and talk with me a bit before I left.  He was a really sweet guy and could relate well to my point of view on the polyklinik.  Disturbingly enough, whilst I was chatting with him, son of dignified bastard came storming out of the professor’s consultation room and slammed the door behind him REALLY HARD.   It’s hard to believe that there can be such evil bastard assholes in the world, but somehow you can find one everywhere…  I mean seriously: what kind of prick do you have to be to slam the door on someone trying to help your father who has a brain tumor?!  It makes me sick.

 

Nonetheless, I had so many very nice conversations with wonderful people today: more than I can write about.  I will pray for all of you and I appreciate your friendship and kindness very much.  Feel free to stay in touch via this blog!

 

I guess this will be the last entry for awhile: maybe until February or even later.  Don’t worry about me: I’m not dead, just living my life to it’s fullest.

 

Thanks for your love, support, prayers, and well-wishes: I love you all.

 

|K<

 

 

 

 

Donut Day 2012

Well, it’s FAT TUESDAY again… So doughnuts it was!

but today I am writing to tell you about my full-body-dermatological-magnifying-glass-investigation. I passed! No Melanoma found on my body (and he looked HARD). Actually I had been to the Dermatologist to see about my acne, and this was my first follow-up visit. The topical anti-biotic which he had prescribed to me has been meeting with some success (he estimates about 20% at this point). But it is a medium-to-long-term treatment and he thinks that it will be rather successful. In addition he has giving me a rejuvination cream against the Rosacea outbreak on my right cheek: he says that the red spotting is because the blood vessels (capellaries) are damaged and that with time, if the acne isn’t continually stressing them, they will heal and the redness will go away. Here is a picture of me today:

me today

But the pharmacy was closed today because of Fasching (Karneval), so I’ll start with the rejuvenation cream tomorrow night…

I am So HAPPY

Additionally, the Dermatologist confirmed that the Acne is *not* a side-effect of the Keppra. Perhaps the Keppra is ‘encouraging’ the Acne (he says), but the fact remains that were I not on Keppra I would still have the Acne (Dermatologist’s opinion).

Otherwise, things over here are going really great!

So… if you don’t find many postings here on my blog it’s because I am so very busy and everything in my life is going so great: nothing to worry about!

Thanks for reading,

|K<

Neurologist says to REDUCE KEPPRA!

It’s been horrible weather here, as you may have gathered. Yesterday (Monday) was such a busy shitty weather day it made me sick (quite literally). I woke up with a sore throat this morning and am feeling really crappy: downing vitamins and eccinacea as fast as reasonable… But a big part of the total hussle yesterday was getting to my family practitioner in order to get my transfer slip (insurance BS) for my neurology appointment today (which I had after work).

Naturally, after examining my MRI images and the letters from the other specialists my doctor was quite chipper: he admits that most of his patients don’t have such good news… My agenda was to get from him a referral (and transfer slip–more insurance bureaucracy!) for a dermatologist. When I complained about my acne and dermetitus at Großhadern 2 weeks ago the neurooncologist said that I need to consult a dermatologist: so that was my priority number one today. The neurologist looked up the side-effects of keppra (like every time) and said that at high dosages (which mine is) eczyma is not uncommon, and agreed that I should see a dermal specialist, gave me a number and a transfer slip and then we discussed reducing my keppra: which——— for the first time ever: HE WAS FOR! But he only wants to go down 500 mg to 2500 mg. So I will take 1000 mg in the morning and 1500 mg in the evening until I see him again (in 4 months). So that’s WONDERFUL NEWS!!!

And finally I’m going to add a few pictures here: these are all from the first Advent (Thanksgiving weekend) when the Christmas markets just get started… We did much of our Christmas shopping at this Christmas market in a mediaeval village in Switzerland (where we also attended a candle-dipping event hosted by the local scout-troop). Was a wonderful outing (and now you get to see where your presents came from ).

The main street of the village was all decked out: the whole street lined with little stands with foods or crafts.

some beautiful hand-made lacey things

my swiss clan: all three girls in a row

Although I’ve already gotten a lot behind me, this week is only just getting warmed up… tomorrow after a very busy day at work I have my first yoga class. There’s a yoga institute around the corner from my apartment and I called them up on Monday. To my surprise an american answered the phone and talked to me a great length about their offerings, especially in terms of their having a special course for people on chemo therapy (though he said it’s all women with breast cancer). But he recommended that I start at the beginning and judge for myself which classes best suit my strength and needs. So I am looking forward to that.

Also Lucy turns 6 years old this week (yippee!!!) and she’s also been having some health issues: her anal glands have been much too productive lately and I need to have the vet express them for her. It’s really disgusting when they leak: what a horrible stank! But from what I’ve read that seems to be the lesser of two evils: dogs with compressed or blocked anal glands– would seem to be more problematic. Nonetheless, little Lucy girl needs a visit to the doctor as well, so I’ll try to schedule that for Thursday or Friday (the sooner the better!!!).

That’s all the news that’s fit to be disseminated. Thanks for reading and best wishes from Munich!

|K<

Happy New Year

New Hat, New Scarf, New Gloves (THANKS for all the great Christmas presents!!!)

It’s a rainy and cold January in Munich. Totally shitty weather to be quite honest. I’m back at work now since Monday and glad to be back to a routine: too much holiday can also drag on a bit… though I can’t complain: have had the nicest family Christmas holidays since years. Thanks to all of you for your wishes, cards, presents, messages, and mails: happy new year to everyone– a wonderful 2012 it is going to be!

I got a hoody for Christmas: the traditional Philly gangsta

Lucy and I spent the Christmas holiday in Zürich (we were there for about 12 days, and it was wonderful!) The weather wasn’t all that great, but cold. And rainy. But that didn’t matter: we had a mountain of gifts, a huge organic turkey, wonderful friends, family, and loved ones, and plenty of time to enjoy it all. What a huge and welcome change from last year.

but real gangstas look like this! (Kenti Breaking Bad)

My health has been quite good: I’ve been kindof celebrating the great news of last month– better said, I’ve been not worrying about anything lately. For the first week of Christmas vacation I rented a car: a brand new (only had 2 miles on it!) BMW 118d. What a fun little ride for the autobahn! It slid right down through Bavaria like it was built to do so (as it probably was…) It had literally only been driven from the factory to the car rental agency. 6 gear manual transmission diesl: I spent only 50 euros in fuel to get to Zürich and back again– amazing! and a fun treat: my Christmas present to myself… was wonderful to be back behind the wheel. I miss driving, but I don’t miss owning a car. So renting a couple of times a year is the best solution for me. What fun.

Thinking back on good times

Of course for me Christmas time is a time to introspect and look back… my Grand Mal happened at Christmas time, so it’s natural to take inventory of your life, I guess. Have been thinking about (and praying for) my Grandmother(s) a lot: these two old photos from my refrigerator…

As the mother does, so the son shall be...

I remember so many Christmas’s… Santa Claus bringing me a sled (thanks Uncle Bill!), my first Big-Wheel, a battery powered mini-car, dozens and dozens of heavy metal cassettes in the 80’s (!!), It was soooo great: I would give my grandma a list of cassettes that I wanted and she would always get them for me, no matter what they were (and in my pre-teens they were ALWAYS heavy metal). I liked to imagine my grandma going into the music store and asking for help finding IRON MAIDEN or Judas Priest or Mötley Crüe… what a great grandmother!! Then once I turned 16 I got a triple-A membership card every year: always anti-climactic to open but SAVED MY ASS more times than I can count!!!– good one, dad!! One year I got a backpackers tent (also saved my ass on numerous occasions…) and I remember one year my grandmother was so excited about all the great stuff she brought for us that days before Christmas she began pointing out the gifts and telling what was inside… how fun! I got a pair of skiis one year (really nice ones, too!). And I’ll never forget that one snowy Christmas morning when I awoke and saw three-wheeler tracks outside my window! YES!! My dad bought me a Three-Wheeler!!! It was a 50cc Honda if I remember correctly: man did I have fun on that guy over the years: I literally drove it into the ground. I’ve had so many amazing Christmas’s. Because I have such an amazing family! I love you guys: thank you all so much!!

Thanks for reading,
best wishes from Bavaria,

|K<

Snowy Saturday, New Beginnings

The weather here in Munich has been turbulent to say the least… there have been extreme weather warnings in place for all of Germany for the last days: in fact the high-pressure has been so great that from my office window I could see THREE ranges of the Alps. Normally on a clear day in summer I am lucky to see the first range. The snowfall altitude has come down to 500 meters over sea-level so we should be expecting to get dumped on, but it is just teasing us. When I took Lucy out this morning for our morning walk we were in snow squalls. So we ducked into a local cafe for breakfast. A rare treat which we only do once a month (on a good month) but we were still feeling victorious and ready to celebrate our first full year of no-tumor-treatment!

Bavarian Bee-Sting Cake

One of the things I really enjoy about living in the city-center is the availability of nice restaurants and cafes and bakeries. In this case we stopped in a little cafe which bakes cakes and pastries steeped in Bavarian tradition, but not one of the touristy “traditional cafes.” For 8 euros I can get a ham and eggs breakfast with a cappuccino, and every now and again treat myself to such yumminess. This time I went a bit further and had a slice of cake for my “breakfast dessert.” Alot on my schedule for today: cleaning the apartment as a precursor to getting on with my programming projects (it’s easier to concentrate in a clean studio!) and then making a big push on the final piece of my big music software puzzle– which has been put off for far too long.

When we got out of the cafe the sun was shining! (calm before the storm?!) And we were not the only dog people in the park utilizing the break from precipitation: so I unleashed Lucy and had a brief talk with the other dog owners, trading stories and hearing the local dog-park gossip. But their dogs were all boy dogs and Lucy didn’t appreciate them at all: she only wanted to play with ME and found them to be a barking, rude distraction. So we headed home and started with the projects of the day!

looking straight ahead: you can see how deep the gliomes have reached.

Between cleaning and programming I did have a chance to load my images into Osirix and have a browse around. It is always astonishing to me at how far (as in DEEP) the arms of my Glioma have reached into my head. I am so very lucky to even be alive. And especially lucky to be as healthy, cognizant, intelligent, and creative as I (still) am. Trying to make the most of it while I still can.

I love you all, thanks for reading,

|K<

Two Year Checkup, Großhadern

Lucy's New Nest (under my right loudspeaker)


Again after sleeping for a solid 10 hours (and abstaining from any alcohol for well over a week) I arose timely and took Lucy for a quick jaunt around the dog-park across the street. The weather is HORRIBLE beyond description: temperature of 1º Celsius, winds at 30 km/hour and rain squalls downpour madness. Yuck: what a way to start the day. Lucy was glad to get out and back in as quickly as possible, I jumped in the shower and packed up my (big) backpack with all the MRT’s and medical documents of the past year (a very heavy backpack indeed!) and made the trek to the subway. I stopped for a coffee to go and a pretzel at my normal subway breakfast vendor. She also warmed me a panini with salami and cheese for later– you never know how long you may sit in the waiting room there: better to be prepared. On the train ride there I practiced for my Krasowski index tests– you have to list (write on paper) as many words you can think of starting with a given letter inside of 40 seconds. So I practiced ‘L’ and ‘P’ in the subway. I also knew that if I didn’t get my caffeine levels up before I got there I would do horribly on the reaction times part of the test, so I bought a second coffee at the subway station for the Clinic. It tasted horrible: after two sips I threw it away. When I got inside the hospital I stopped at the deli there and got another cup of coffee to go and it tasted EVEN WORSE. By now I had thrown away five euros worth of coffee, was freezing cold, wet, and aggravated. Oh boy.

Then I got to the waiting room. I was exactly on time for my 11:30 appointment and saw that the waiting room was almost at capacity. This is a horrible waiting room: there’s never any cheer or happiness in the brain-tumor line. I was sitting across from a mother and her son of maybe 7 years who had just had his biopsy. She was far more scared than the little boy: he just wanted to get on with Christmas. But he is in a pretty bad way: he could speak just fine (although only in Bavarian) but was extremely cross-eyed. Aside from them there were the occasional room-length pacers (inevitably), and countless worried couples. The loved-ones are generally much more worse-for-the-wear than the afflicted. As though the tumor sufferers have succumbed to the reality of their situation, but the loved ones can’t really grasp it. I was bracing myself for a long wait– the room my doctor uses was totally empty indicating to me that he was tied up somewhere else. It’s a bad time of year for neurosurgeons: with the weather as bad as it is, it is not uncommon that they have to perform emergency surgery on the drop of a hat. It wouldn’t be the first time I spent 6 hours in that waiting room, so I came prepared with plenty of reading material. But: Lo and Behold– after one hour I heard my name being called across the din and realized that my doctor was using another room for his consultations today: JOY!

My Acne at it's worst. (Keppra?)

So I dragged my huge backpack of documents with me as he laughed and asked if I had *all* of my MRT hardcopies with me (which I confirmed). He then asked me if I had been suffering at all or had any symptoms since he saw me last. I told him that the only thing I had to complain about was chronic Acne. He looked up in his database if Keppra (currently my only medication) had any indication of Acne and said that it’s possible but I had best see a dermatologist about it. He then looked at the MRT images together with me and showed me the official report from the Radiologist. The Radiologist indicated that in his opinion the tumor appears to be diminishing in size and on the retreat. My doctor warned however that the images can be deceptive and that although the strands of contrast uptake that we had been used to seeing were not visible, it could be that due to the angle of the MRT or other variables out of our control that they are still there, but not visible. But although he could not confirm that the tumor is shrinking he said that it is, without a doubt NOT GROWING. In his professional opinion this is the best that we can hope for and gave me a very broad smile and double-thumbs up. He is also very proud of my survival: as a young neurosurgeon I am sure that a success story such as mine is indeed good for his reputation and his body language indicated that to me. He also warned me that because of the fact that my tumor is an Anaplastic Astrocytoma it is probable that it can break out at any time and start to be agressive again in the future, but that checkups in 3-4 month intervals should be fine to pick up on any growth spurts that may crop up.

GREAT NEWS!

In the end the director of the research program never showed up to give me my brain damage qualification tests, so I didn’t need to worry about my reaction times etc. When I got home I shot a quick mail out to my family who I knew was waiting on pins and needles (or on the sofa in front of a roaring fire, as one may have it), and then took a victory nap. The rest of the day was spent Skype-ing with loved ones.

Thanks for checking in with me: best wishes from Bavaria,

|K<

Three Tesla

The area between the holes (on the right side of my skull) is the 'window' they removed


Lately I have been drowsy. Really drowsy. Like when I get home from work and take my evening Keppra dose I fall immediately asleep for about two hours. It is almost uncontrollable. So it was no surprise that I fell asleep quite early in advance of my Radiology appointment today. Though I did wake late. And Lucy did not want to cooperate: so her morning walk would have to wait until I got back from the MRT (she gladly went back to bed– actually she never got out of bed). The upshoot was that I was at the Radiologist about 30 minutes early which turned out to be a good thing: they actually really appreciate that. I was also pleased to find out that my GP had managed to FAX my blood test results ahead of me (for once) without me having to chase him down– YAY! Then again sign all the disclaimers and fill out the questionnaire, though I was uncertain about my weight, so I put “90 kg.” In retrospect I realize that this was wrong: I must have lost weight. They calculate the dosage of the Contrast Dye based on your weight and so they must have given me a heftier dose than I am used to because I really did react to it strongly–> not as strongly as my very first time (there’s never anything like the first time with any drug, right?!) But as soon as I left the office and got on the subway I fell asleep on the train and almost missed my stop. When I got home I collapsed onto the bed and fell into a deep sleep for about an hour before Lucy reminded me that she still hadn’t been out for a walk and we were still expected at the office… so off we went.

But the MRT experience was quite good: there was a different technician there than I was used to and she was very no-nonsense and efficient. After the imaging the Radiologist gave me the CD-Rom and hardcopy, telling me that to her eyes the tumor is on the retreat. So– good news!

The rest of the day was without incident aside from massive amounts of sleeping after a (rather dizzying) day at work. Tomorrow: outpatient visit to the Neurosurgery Clinic to meet with my Neurooncologist.

thanks for checking in!

|K<

Second Anniversery Grand Mal

Well, it’s December 10th again. That means that two years ago right now I was having my very first epileptic seizure. Well, I certainly have changed and grown a lot over the past two years (as I now take the time to reflect back on all that has happened– thank goodness I keep this journal: so many things I would have forgotten!). A year ago I was at the lowest point of my chemo therapy, had the Flu, was addicted to steroids (dexamethasone), had diabetes, and knew every episode of ‘The Office’ by heart. It was a low-point indeed. But I made it through and have been stable since: for that I am very thankful.

I am also very thankful for all of the support I’ve received from friends, colleagues, and family. So many people came to visit me as I was sick from as nearby as Allach and Stockdorf to as far away as California and Mexico! You all made a big impact on my recovery and helped me to become a 2-year-survival statistic! ( what a strange thing to celebrate… )

So that is what I am doing today: celebrating my 2-year survival… This coming week I’ll be having a whole load of imaging and tests done, culminating with a visit to the Neurosurgery polyclinic (Großhadern) on Friday, where I’m sure they’ll be giving me the cognitive response tests again to see how much damage the noodle has incurred. I have to admit: I do actually practice for thoses tests (as much as one can). But they never said it’s not allowed to rehearse!

I turned 40 this year… and since September I’ve been fighting depression. When I stopped the TEMO-CHEMO I laid out a very reasonable set of goals to accomplish in my artistic (musical) career and I’ve not managed to make much of a dent in them at all… which has led to me getting very down on myself and attempting to ‘work-binge’ when I get some free time. This unfortunately has the effect of acting negatively on my health (my lower back and neck in particular: the TMJ mentioned a few months ago for example). My lovely co-conspirator does manage to quell my anxiety attacks by reminding me that I am still recovering and that I need to be realistic with my goals and to pace myself. But it’s not long before I start feeling very down again and like I am stuck in a horrible creative rut that I can’t dig myself out of. Making music and art has always been a kind of therapy for me and when I cannot do that I get grumpy, depressed, and even overly cynical and mean. And now I’ve got all of these stalled projects, unfinished ideas, and even some final products which just need a final push and a bit of love and attention to get out the door… but I feel like an animal trapped in a corner: unable to help myself and with no direction to turn to. I know that it’s my own fault for letting my projects stagnate and in many cases dropping the ball completely and that I need to be consequent about my decisions and my actions, but at the same time I am very disappointed in myself and am down on how very little discipline I have anymore. I often (lately daily) think that I should be playing the saxophone again (as I did daily for 25 years), but am of the opinion that if I cannot devote at least an hour a day to it that it will frustrate me more than help me. I am also very frustrated being in a place (city) where I don’t have regular access to like-minded artists and music-colleagues– I feel like even if I were to be working on something important nobody would ever notice it. But anyways: I don’t want to ramble on about how depressed I am– today I am trying to focus on celebrating my life. But the one thing that I did achieve this year was to archive *some* of my earlier computer music works on SoundCloud… ironically enough: in 1999 or 2000 I had composed a piece (which I found on a backup CD in my basement) and on the CD was hand printed the text “Brain Tumor Test” — and that’s all. About 10 years before my diagnosis of course. Strange, no? Anyway, you can hear this composition (along with many others) under the following link: http://soundcloud.com/clelland
Thanks for your continued support.

Lucy's Costume


Finally, I want to thank all of you who have gotten in touch with me today to congratulate me: that was very sweet of you. And yes: it’s true– you can never be *really* lonely when you have a beagle. Thanks for checking in with us, peace be with you.

|K<

Flux Capacitor Day Again!

26 years ago Doc Emmett Brown invented the Flux Capacitor

Help to find a cure for Parkinsons and bid on a wicked pair of shoes.

http://www.youtube.com/watch?v=eYMyEqRb2cw

peace be with you,

|K<

All Saints’ vs Halloween

There’s no need for alarm… I’m still here, still alive, and still going strong. Though very busy. Getting a lot of things in order, professionally, musically, artistically, romantically, and some other stuff too…

For the past three weeks I have been suffering from chronic TMD which stands for Temporomandibular joint disorder. I’m not sure why… but it has been hell. When I wake up in the morning I have a horrible headache and can’t close my mouth properly and it generally takes about 3 hours (and a few pretzels worth of chewing) to get it mostly gone. At it’s worst I was taking 800mg of Ibuprofan every 4 hours. My first attempt to rid myself of this was to go to the Acupressure massage studio (Traditional Chinese Medicine) in my neighborhood. The Chinese massage dude there is AMAZING. He was able to massage the pain away and get me chewing again (only cost Eur28!) and I felt much better afterwards. But the next day the pain was still there, just as bad as ever… The next week (2 weeks ago) I scheduled another massage there, but beforehand went to my GP doctor. My doctor said that he hadn’t had any experience with TMD but suggested I go to my dentist. On the other hand he did say that my insurance would cover acupuncture and that it would be worth a try… and he asked me if I had time now, which I did. So I spent an hour getting acupuncture before going directly to the Chinese doctor where I got 45 minutes of Acupressure. When I got home I fell into the deepest sleep I’ve had in months. But my head and mouth still hurt. Next step was an orthopedic pillow: courtesy of my lovely co-conspirator… so now when I’m “at home” in Switzerland I have a very comfy and very orthopedic pillow to rest my head on– it’s wonderful, and I’m going to get a second one for when I’m in Munich as well. But that still didn’t fully fix the problem… Yesterday (Thursday) I went for my second Acupuncture session which was noticeably better than the first (I could definitely feel my nervous system resetting: great sign!). And today–> I woke up for the first time NOT IN PAIN and able to move my jaw freely!!! YIPPEE!!! So I treated myself to a nice breakfast at a street-side cafe in the sun and had a very productive day working. Next Monday I will have another Acupuncture session: it’s supposed to be very good against lower back pains as well. VERY HAPPY. Though I still don’t know what has caused the TMD to begin with. It could very well be hypertension related or work-stress (same thing: duh!). Hopefully I’ll be able to keep it reigned in…

As far as the brain tumor front is concerned: I’m doing very well… still have another month before my next MRT and neuro-oncology appointment. I am staying positive and happy to be alive.

peace be with you and thanks for checking in with me!!

|K<

September Post

Entrance to Caberet Voltaire

It’s been a long time since I’ve posted here: my apologies– I’ve been incredibly busy (and surprisingly healthy!) so in my case no news has been good news. And so far so good: it would seem as though it’s staying like that for some time… at my August appointments (MRI, FET-PET, Neurosurgery, Neurology, et al) the specialists deemed my state as being STABLE and have given me another 3 months of reprieve. So currently (and since March 2011) the only medications I am taking are the KEPPRA (3000 mg daily). Everyone, including me, is happy with this: although I admit I would prefer to not be on the KEPPRA at all, but I understand the reasoning behind it. In general the Keppra makes me very clumsy, and I now feel (after having taken it for 20 months) that when it’s time to take it (2x daily) my body begins to ‘crave’ the drug, which mostly manifests itself in my getting grumpy. Especially also because if i do not take the Keppra with food then my stomach gets very aggressively angry at me which makes the situation worse. So generally speaking, come dinner time i tend to get clumsy, grumpy, and easily aggravated. The other side effect which i am dealing with is, I can only assume, the TEMO slowly making it’s way out of my system. Slowly the strength in my joints is coming back, and I’m not waking up SO creaky anymore (though it’s not entirely gone). I’ve also not been taking that Chinese serum which tasted so awful: it worked well, but I’ve not taken any since June. However I’m (still) experiencing a lot of discomfort in my skin in the form of chronic acne, which isn’t very pleasant as it makes me feel ugly: it appears dominantly on my face! Though it’s been coming in waves and each wave is a bit less intense, so I am hoping it’s the last remnants of the chemo making their way out of me. Also I’ve been eating an almost entirely organic diet since mid-august which is having an effect on me as well. So the health summary is that I am trying to push the last vestiges of my first year of Temodal out of my body and currently stable though suffering the minor inconveniences of Keppra reliance.

the sugar in my life

Additional tidbits from my life: I am living now part-time in Switzerland with my girlfriend, Jana and her two daughters. She is the sugar in my life. I travel with the train on weekends to Switzerland and return for work on Mondays. It is a fantastic situation and I am very happy. The train rides give me time to examine my life in retrospect, plan for the future, work on laptop projects, and even sometimes catch up on a little bit of lost sleep. My neurologist (who had been bugging me since day one to get a girlfriend) congratulated me and told me that he finds this situation to be ideal: train rides being a safe and reliable form of transportation, not too much emphasis on either my professional nor my family life, and the emotional support network I need to cope with having a brain tumor. So YAY for ME!

Last weekend we (Jana & Me) did something very special (most unique date ever!) which was to go to a cooking course at a very fancy (and famous) restaurant. Right in the heart of the old city in Zürich, the restaurant is in the (former) home of Goethe and right next to the St Peter cathedral. A spectacular location to say the least. The class consisted of 16 attendees and we cooked a five course meal. There were two teachers, one famous (Michelen Star) chef and one aspiring young chef: and we split into five groups of 2-4 people with each group responsible for a different course of the meal. I participated in the first-course-group: salad. I wanted to be a part of something I couldn’t screw up TOO much and I also wanted to have my duties out of the way so I could relax and enjoy the (very FINE WINES) for the entirety of the evening: fortunate we took public transportation there so we didn’t even have to drive home! Jana participated in the dessert group… everybody there spoke Swiss-German (except me) and most people were even quite un-snobby and friendly (with only a few exceptions). We got our money’s worth (it was about $60 per course per person), learned a lot, and had a wonderful time in doing so. We even got to take the recipes home with us: so maybe someday we’ll even try to cook them. But it sure was fun to cook in a professional kitchen under the guidance of a famous chef: definitely an amazing experience!

Smiling Beagle


Now I’m on the train back home to Munich: the Oktoberfest is almost over (thank goodness!). I’m currently abstaining from all beer on account of my skin– the yeast definitely aggravates my acne and I need to do everything I can to not aggravate a bad situation even more!

Thanks for reading, and best wishes to you all from this little corner of the world!

|K<

Hot Sticky Summer

Café in Zürich

In an attempt to bring y’all up to date… I’m going to deposit my mid-summers-blog-entry at this point.

I’ve been busy. Keeping busy is keeping me distracted from things which could get me all bothered, so that’s a wonderful thing: and I’ve got great co-conspirators to make sure I’m practically always busy. YAY!

My health has been quite good. I’ve been experimenting with herbal remedies outside of what my chinese medicine doctor had prescribed me (which worked great, btw). Currently I’m doing my 2nd echinacea cure which is also great but encourages all possible pimples to come to a head at once: so it can be a bit uncomfortable. But it’s good to get all the bad stuff out! Also I’ve started eating 2 (TWO) bitter apricot seed-kernels per day: they are full of vitamin B17 and are supposed to be deadly to tumors (I can definitely feel the stuff doing SOMETHING!)

Other than that things are going well: getting ready for summer holidays– very much looking forward to that!!

thanks for checking in with me and best wishes from Munich!

|K<

have a great summer!

Polyclinic, June 2011


Last Friday (the 17th) I woke up early (still jet-lagged actually) and went over to the Klinikum Großhadern for my next appointment at the Neurosurgical Polyclinic. My doctor recognized from the (new) MRT pictures that I had my birthday last week and congratulated me. He also looked closely at the new pictures of my head and said that it appears to be another stable result! When comparing the images between last April and Now he said that it is very difficult to tell because if there are any changes they are very minimal. So he is going to check with a radiology specialist as well as discuss the findings in the next Tumor Group meeting (this coming Thursday). He said that it is very probable that they will want to do another FET PET test on me to ensure that there is no tendency towards growth in the tumor and that he would get back to me in the course of the week to confirm that.

So now I am officially on my 3rd 8 week TEMO-CHEMO pause. YAY! Aside from the Jet-Lag, which has been wearing rather heavily on me, I’ve been feeling fine. I just need to get my schedule turned back around from California, which over the course of this week I’m sure I’ll manage.

Thanks for reading and best wishes from Munich!

|K<

June Radiology

There's a bug on my head (what's on the inside?)

Still Jet-Lagged from the trip to San Francisco, I managed to wake up interminably at 4:30 am… I had a nap after work yesterday and then fell asleep (after a few Lorazapam’s) at around 1:30 am. But at 4:30 I was unstoppably awake (is that what interminably means, btw?) So I got a bunch of stuff done (including exercising) and after a pretty relaxed breakfast made my way to the subway and down to Großhadern for my MRT appointment. Everything went smoothly (even the Kreatonin blood-work stuff managed to happen timely enough to avoid delay). The radiology technician told me that I fell asleep in the tube (I generally do).

As you may recall from my last radiology appointment, there was a bit of a bad experience in that the radiologist had mis-analyzed my pictures and scared the poopies out of me. So this time I made the appointment with the ‘GOOD’ radiologist (she’s also very pretty– as if that makes a difference.) When she called me into the review room to examine the pictures, the first thing she asked me was who my neuro-surgeon is and how he responded to the written report of the previous radiology appointment (in April). I told her the truth: that my doctor told me to never use that radiologist again. She laughed and agreed, that it was really bad what had happened and was in agreement with the analysis of my neurosurgeons. She also very carefully showed me the entire history of my tumor in pictures since I started using her practice and informed me that IF there was any change in my tumor at all, then it got smaller. But it appears (to her un-official) eyes to be a stable result, possibly a dimunition of the tumor. so: good news! But I’m going to let the official (neurosurgical) doctors evaluate the situation before I get too excited. But at least I can see that nothing super-bad is going on, so that’s great.

best wishes from Bavaria, and thanks for checking in!

|K<

Sake To Me

Sake To Me

Just arrived back from San Francisco where I had been attending the Apple World Wide Developer Convention 2011 (WWDC11). I flew out of Munich (after eating the most wonderful French seafood in the city with my hyper-awesome co-conspirator) on Saturday mid-afternoon. I had even managed to (mostly) clean my apartment (ie empty the garbage) and pack (more-or-less) everything I would need for a 10 day trip to San Francisco…

And when I got there I realized I hadn’t really forgotten anything. Except toothpaste, shaving cream, underwear, and socks…. But those were all easily recompensed 😉 The hotel gave a 10% discount at Macy’s and when I showed up there (Union Square) after walking around 4 floors cussing at people that there were only woman’s clothing for sale, some nice elderly lady explained that the BUILDING NEXT DOOR was only for men’s clothes… thus the confusion: I was in Macy’s Ladies… oi oi oi But long story short the Macy’s people were having a 45% off everything sale so I stocked up on some basics like trousers and shorts and shirts as well. Would be good to look good while in town, right? (right!)

The developer convention itself was what was expected. For this audience I’m sure it’s a snore, so I’ll just skip it. Suffice it to say that from 9am to 5pm every day we were in different training sessions or hands-on laboratories. That pretty much sums it all up.

The evenings were spent getting together with long lost friends, or brand new ones, or both. And SF is a great place to do that!! We ate so much wonderful food… a few highlights were the Tadich Grill (amazing traditional steak house that was serving sirloins to prospectors way back in 1849), Firenze in Little Italy (what would a trip to SF be without checking in at North Beach!?), and last but not at all least: the Organic Japanese Restaurant in our hotel (ANZU in the Hotel Nikko) was the creme de la creme. The Sake menu alone was really a great reason to stop by, but the fish… oh the fish! so good.

But now I am back to Munich, and it’s examination week again:

  • tues: blood tests

  • wed: MRT’s
  • fri: Neuro-Surgery (have the MRT’s read / analyzed).

So that’s what’s on the horizon, health-wise… During my trip to California I had absolutely NO problems with my health, with the exception that I pushed my body very hard and sometimes it pushed back (sore neck, runny nose, achy knees), but nothing neurologically serious. Hopefully everything will be fine in my head this week, I’ll be sure to let you know!!

best wishes from Bavaria,

|K<

spring cleaning

It’s been a while since my last musings, so I thought I’d bring y’all up to date…
I am now about half way through my SECOND 8 week TEMO-PAUSE. I’m still fighting off the (side)- after- effects of the chemo… but am getting on with it. The two big effects I’m dealing with are the massive pimple invasions (still!) and the arthritis in the knees, fingers, ankles (in that order). I have managed to get myself pretty much entirely OFF of the optional medications I had been taking: diclofenac (against arthritis) and oxazepam (as a sleep helper). Instead of taking the DICLO, now I have switched to a Chinese solution… which is actually working noticeably better. When my doctor suggested that I try it, he told me that he thought that my arthritis was due to too much fluids in the joints and that he would prescribe me a Chinese remedy which helps to (over time) remove excess fluid from the joints. So I said to myself: ‘what the hell, after all: I hate the diclofenac!’ and started off on the distilled (alcohol-based) drop version of the remedy. The ‘hydrophile’ remedy is available in two forms: either as drops or as dried herbs which you can re-hydrade and boil down into an extract. I’ve tried both now. I started off on the drops because I was unsure that I would be able to cook the herbs properly and wanted to be sure that what I was taking was the right stuff… and after a few weeks of it I had not felt any different at all than what I was used to with the DICLO. But one weekend I forgot to take the drops and that was HORRIBLE. In absence of the remedy I felt horrible. So after the drops were gone I tried the dried herbal ‘do-it-yourself’ version. Admittedly I did not do the re-hydrating / cooking aspect of it myself (or at all for that matter): fortunately my very loving co-conspirator took care of that part. But drinking the stuff is difficult enough: HOLY SHIT, I’ve never tasted *anything* that bitter and nasty tasting in my whole life. It is a major effort to not let your gag reflex slam it right back out of you… ewwwwwwwww! However, the “tea” extract version is much more potent and on mornings after having taken it I had almost no arthritic symptoms (or at least noticeably less). So I am very confident about the power of these TCM (Traditional Chinese Medicine) remedies… But for the time being I am back on the drops again: they don’t taste very great either, but are a million times easier to swallow than the extract!

The other optional med I was on was the Oxazepam, which I had stopped in full about 3 months ago. However– last week I was having trouble sleeping and at about 1:30 AM decided to take an Oxa. Apparently my tolerance for the stuff had gone back down because it had a hard impact on me: I then recalled why the doctor told me never to take it after 11pm. The next day until noon I was un-able to focus my left eye and it felt like I was cross-eyed. It scared me quite a bit until I realized that it wasn’t the tumor acting up, but that the Oxa still wasn’t out of my system and I should (technically) still be in bed. So that was a bit scary: but it was clearly a user-error as opposed to something going haywire. It also made me realize how much of a tolerance I had built up to it in the 10 months I was taking it regularly: I am glad to have that tolerance gone…

Aside from now doing spring cleaning (I live in this apartment now for exactly one year!), there’s not much else to report… Thanks for checking in on me and very best wishes from Bavaria,

|K<

Springtime Update

Lucy Tulips

Realizing that it has been unfair of me to not be promptly updating y’all on my condition, I am quickly spitting out this missive in an attempt at fairness. On Thursday the 7th of April I had my Radiology appointment. The asshole Radiologist told me that my tumor had grown by 4 millimeters. She scared the poop out of me. But when I went to the polyclinic the next day the doctor told me that she (the asshole radiologist) was full of shit– and that in her report she had also indicated that I had burst a capillary in the resection area. Both the purported growth and burst capillary were un-truths. The doctor told me to never use that Radiologist again. The doctor also told me that my condition is stable and that I am being awarded an additional 8 weeks of TEMO-PAUSE! YIPPEE!!!!! YAY YAY YAY!
(JOY). So that’s why I’ve not been sitting around at home typing on my blog. It’s a sunny spring, love is in the air, and I’m on the road to recovery.

So do like me & lucy: get outside and enjoy what life you have!

best wishes from Bavaria,

|K<

Spring Break (over)


It’s been 8 weeks. My pause is coming to an end. I’ve given my best efforts to make the most of it… a veritable Rumspringa. I’ve played a gig in Linz, Austria (was AWESOME), I’ve experimented with alcohol on both casual and binge levels of consumption, I’ve been out dancing in the local discos, I’ve been on numerous dates with beautiful women, I’ve eaten sushi, I’ve been on road-trips in which I’ve been behind the wheel of a car (both alone and as a duo), and even done some things which aren’t appropriate to mention (anywhere).

As I had previously written, on the Linz roadtrip I spent a good deal of time behind the wheel (on the autobahn). fond fond fond. That went so well that I decided that on the following weekend I would rent a car and drive (alone) to Zürich, Switzerland. It’s not a long drive (185 miles is hardly a great distance), it takes about 3 hours and requires cutting through Austria to enter into Switzerland (if you opt to not take the ferry across the lake). I was really looking forward to going back to Züri and this time taking Lucy with me (while I was in Linz she stayed with my colleague in the suburbs– as she had previously). I had reserved a car at the local rental agency: a VW Golf — always a good choice for a rental: in it’s basic configuration it’s a solid and reliable car; heavy enough to not feel like you’re about to fly off the autobahn (fond fond fond) at any moment, but small enough to park in the city. 99 Eur for the weekend: good price.

However… I arrived at the car rental place a little bit early (always a good strategy btw) and they asked me if I wouldn’t mind driving a Volvo station waggon that wasn’t reserved, but for the same price? me: OKAY!

Vrrrrooom

I didn’t exactly need all the space that a station waggon has to offer: just me & Lucy plus a napsack were travelling… but nonetheless it’s wiser to have a large(r) profile on the autobahn (fond fond fond) than a small(er) profile. Plus the Swedish road-rocket was a Diesel, I was hoping for a Diesel Golf… so I did pretty good. On the other hand I would NEVER buy this car. It has more blind spots than a Stevie Wonder – Ray Charles duet and seems to be optimized for people 5 foot tall. Maybe the designers had to take their new Chinese overlords into consideration? It had tons of modern technical gadgets: a rear facing video camera, navi system, etc.. but you couldn’t manage to actually participate in the joy of the software’s user interface design and drive the car at the same time: so I didn’t even try. On the positive side however is that the sucker can make time like nobody’s business. It was a 6 speed manual transmission and after spending 6 hours on the autobahn (fond fond fond) doing like 140 mph the whole time, I STILL don’t know what the 6th gear is for.

On the German autobahn (fond fond fond) there are two kinds of drivers: ones who are terrified to get in the left lane because of the incredible speeds involved, and those who are blinking their high-beams at the slow cars warning them not to even think about getting into the left lane. For a change I was one of the latter (YAY!).

So WHY, you may ask was I in such a hurry to hustle the Swedish road-rocket down the Autobahn (fond fond fond) to Züri? Easy: I was anxious to introduce Lucy (aka Lua-tsey) to my co-conspirator and her daughter. What a fun weekend it was: it was the first weekend of really sunny hot weather and we used it gladly and extensively: Lua-tsey even lost weight from being chased around the backyard by a 10 year-old NON-STOP for the whole weekend. We had a barbeque. We played songs (kalimba), we drew pictures, we traded temporary tattoos, and just had a nice family-style weekend. What an excellent break– and a fantastic last weekend of my TEMO pause.

Fun in the Swiss Sun

Now on to my health details (boring as they may be…) On Monday I was at my GP to have my blood tests done: there’s a new law in Germany requiring radiologists to provide a recent proof of KREA values for patients they inject with contrast dye, so I needed to have blood drawn to get this value (which indicates the health of my kidneys). Also because a new quarter has begun, I needed to get transfer slips for my arsenal of specialists. It was good to see my Doc again, it’d been almost 2 months since I was last there. He was happy to get his needle in my arm again… Then on Tuesday something strange happened: I had decided, on the advice of my Co-Conspirator to get a bottle of Echinacea, as it is good at strengthening the immune system. So Tuesday evening I started in on the Echinacea, closely following the instructions of the whole-foods dealer who sold it to me. Man does that stuff work! I’ve had a cyst on my shoulder-blade since 2008– it’s a pretty big sucker which my onco’s and other various doctors have noticed (including doctor sister) but nobody paid much attention to or seemed to be concerned about. But after a single evening of Echinacea that sucker grew to epic proportions and decided that it was time to extricate itself. Today it opened up and started weeping, so I’ve made an appointment with my GP again for friday morning (before my polyclinic appointment) to have him drain and clean it up antiseptically and such. Wow: what an amazing thing! So that’s good news, I guess… my body’s immune system is getting aggressive again: I can grow to like that! So now tomorrow I will go for my next round of MRT pictures and then friday meet with the Neurosurgeons at the polyclinic. This afternoon one of the polyclinic secretaries called to tell me that my normal (head honcho) doctor will not be able to be there, but one of his assistants (who I know quite well) will be there: the most important part is that I get the new pictures to them and they get scheduled to be discussed in the Tumor Group colloquium. So no biggie.

That’s all the news from Bavaria,
thanks for checking in with me!

|K<

Get Well Soon, Card #39

32 years on

32 years ago today was the partial core nuclear meltdown in Unit 2 of Three Mile Island. PennLive (Patriot News) is taking a very pro-nuclear stance in their coverage of the accident (see photo above), and that is their prerogative…

A visit in Londonderry Township and Middletown on Sunday morning showed that many people are complacent about living near a nuclear power plant and not worried that they could share Japan’s fate.

And as of today Germany now has it’s very first GREEN Party Minister-President, a vocal ANTI-ATOMIC ENERGY politician. And much of the country has sighed a big relief. Nuclear reactors have been shut down across Germany pending inspection and the time line for total de-commission is back on the table (until now it is 2021 when all Nuclear power is to be off-line, to be replaced by alternative and sustainable energy sources).

What I don’t understand is why Pennsylvanians are GIVING AWAY the Marcellus Shale gas deposits FOR FREE (without extraction tax), only to have big industry sell it back to them again. DO YOU NOT SEE WHAT IS HAPPENING? If Pennsylvania would keep the natural gas for itself it could take ALL of it’s nuclear reactors offline indefinitely. And to make sure that this status quo of the un-educated, intellectually un-equipped, under literate Pennsylvanian remains a reality, the state government is turning off all funding for education as well. It makes me sick.

Happy TMI day, Pennsylvania.

|K<

Kapu Soundscapes

I have just returned from Zürich, Switzerland, after having had a whirlwind fast, totally amazing, spectacularly alpine, somewhat exhausting, but entirely enjoyable DACH roadtrip. For me it started in Munich (obviously) on Thursday morning with an SMS from my co-conspirator: “baby-sitter’s dog died. call me when you get this.”

At that point (before anything had even gotten started) it seemed clear to me that all the plans I had been working so hard on finalizing in the preceding five days had just been flushed right down the proverbial loo. So I very calmly cooked an espresso and took care of my morning requirements (pills, teethbrushing, &c) before picking up the phone to call Switzerland. I called at around 9:30, expecting to hear some strange story about how the plans have been called off entirely, BUT what I heard was the following: “I wanted to already be on the road right now, but I’m organizing an alternative sitter-strategy, I guess I’ll be on the road at around noon. See you soon.” WHOA!! That was un-expected. But exciting. The road trip was still on. Nonetheless I covered my bases by checking the train schedules: what was the latest train i could get out of Munich and still arrive on time for the sound-check in Linz? 3pm. No later. Okay. Now I needed to keep from worrying myself to death with trivialities and consider things like packing clothes: my equipment was long-since packed up and waiting by the door, but I wasn’t going to screw up like on my last road-trip and forget to pack clothes…

I also needed to go to the flower market. So after a shower and a couple more coffees I headed out the door towards the city center. First stop was the “good” bakery to get breakfast and some sandwiches for the road. Next stop was the flower market to buy three closed roses (as props for my gig) packed in such a way that they would survive the trip to Linz. On my way back home I got a message on my phone: “I’m on my way. See you soon.” WOW! The road trip was proceeding, though somewhat later than planned. We were supposed to arrive in Linz for setup at 5pm, sound check at 6pm, dinner at 7pm, concert starting at 8pm. And we were now almost 4 hours behind schedule. Regardless: we were so stoked, so psyched, so wound up about this long weekend: nothing could possibly stand in our way at this point.

I phoned to see how things were progressing; the plan was that my co-conspirator would drive her car to Munich from Zürich, pick me up, and that we would then drive together to Linz. On the phone she suggested that we could save some time if she didn’t have to navigate inner-city Munich to pick me up and I said that she is probably right and since I still have about two hours that I woud consider the best alternative and get back to her. As it turned out I would be taking the S-Bahn (suburban commuter train) about an hour south of munich along the highway she was coming in on and wait for her to pick me up there. She found the S-Bahn station without problem, we loaded my gear into her station waggon and I jumped into the driver’s seat: we sped down the autobahn towards Salzburg (and ultimately Linz) as fast as that little Opel would kick it. We managed to make very good time, not run out of gas along the way, and the only time we got actually like *really* lost was finding the venue once we were in the center of Linz (it’s not a very simple place to find if you’ve never been there).

It took me about ten minutes to get my kit set up for the concert, five minutes to sound check, and ten minutes after that the lights went down and I let loose with my live laptop performance. The venue is called the KAPU (http://kapu.at) and is a famous old (like 40 years) punk rock club run by anarchists and artists and the alternative crowd. It’s a wonderful place, housing a few stages (my gig “soundscapes” was in the cinema). There is also a ‘hotel’ there which is like a row of barracks style beds in the green room. Fortunately I had made a reservation at a “nice” hotel in Linz as a backup: after seeing the arrangements being provided by Kapu I knew right away that we were going to opt out, even if it did mean missing out on the experience of sharing the same sleeping space (and maybe even the same bedclothes) as the original lineup of Nirvana.

The concert itself did not go without a hitch, but the technical difficulties encountered would have been avoided if I had been on time, so there’s not much that I can complain about. It was fairly well attended: 25 people paid 8 euros to hear me perform live. So that’s not bad, especially since I knew NONE of them– there was absolutely no friend / family / colleague factor involved, so that considering: it was a big success. They were VERY enthusiastic about my performance and gave me an appropriate ovation. I was pleased. After the concert I was interviewed by a Linz local radio station who is going to broadcast my performance in it’s entirety (1 hour), with soundbites of me talking about my music in between the (three) compositions. We were packed up and had walked over to the backup hotel by midnight.

I had only counted on staying in the backup hotel (“the black bear”) one night, but they were accomodating and understanding about our need to check in a day earlier: our room would be awaiting us for a late check-in (midnight). Apparently we had the “theme” room. And the theme was (drum roll…) BLACK BEARS. There were airbrushed murals on the walls depicting black bears catching salmon in the Danube with the Alps in the background. Who knows: maybe all the rooms had black bears airbrushed onto the walls… funny. Ugly. Amusingly kitsch. In a non-tasteful kitsch kindof way… we were so dead tired after having driven all day and then the stress and excitement of the gig: we fell immediately into a deep sleep.

Planned into our weekend was a “free” Friday in the city if Linz. Admittedly we didn’t see half of the things we had planned on seeing– neither of us having slept long and deep since weeks– we slept quite late. Had a nice, great big breakfast buffet, and lazily strolled around the city– tasting the local apple strudel and coffees, all the things Austrians are famous for… in the evening we ate at a very nice japanese restaurant, just because it struck us as what we happened to feel like at the moment. Total relaxing, no plans, no stress, no appointments, it was a perfect day away.

Saturday morning we needed to get up very early, however because the Swiss baby-sitting services were going to expire in the afternoon: so we needed to boogie to get 7 hours down the road. Before taking off we had coffee with my friend who invited me to play the concert and discussed the possibility of working together again and perhaps even some kind of exchange between Linz and Munich. It’s looking good on that front and I am glad that we had a chance to sit down in quiet and brainstorm future collaborations. He is teaching computer music in Linz and directing a Laptop ensemble, so the opportunity is there for me to compose a piece for his group and perhaps do a masterclass or lecture around the premiere. Sounds like fun, I’m hoping we can make it happen…

On our drive to Zürich the weather turned on us… by the time we reached Munich it was a nasty rain and the roads were getting full of traffic. I insisted on driving back to Züri and after throwing my equipment in my apartment, off we sped. Three hours later we had relieved the sitter and were on our way to go out and about in Zürich. We went out for sushi at a place called Yooji’s Sushi Deli. I felt as though I had been dropped into an alternate universe. Electro-magnetic running sushi which when you pull the plate onto your counter-space get’s automatically (magnetically) scanned and added to your bill: touch-screen terminals at every seat– my co-conspirator’s 10-year old had to explain to me how to order a miso soup (which to do she had to cancel her instant-messaging dialog with the boy at place #13). The touch screen kept a running tab of your sushi orders, offered you the possibility to order beverages, and allowed you to summon the 6-foot swiss teenager who looked like she was on her after-school job while the swiss national volleyball team has a training pause. The food was much better than most fast-food japanese, but it did not transcend the genre. Seeing as how we were in the food court of the local mall, it was astounding… everything so technical, advanced, designed, and CLEAN. clean clean clean clean clean. Zürich is, if nothing else (other than expensive), very very clean. Like if you would drop your sushi on the floor you could just pick it up and eat it levels of clean-ness. What a surreal place… especially coming directly from the punk-rock institution of Linz where dreck, scum, smut, and muck are the status quo, just an average, every-day suburban Zürich mall is a holy grail of total cleanliness…

After all that driving and sushi, there was a quick shower and a direct falling into a deep sleep. I awoke to the smell of waffels and coffee and there was a cat sitting on my head, meowing very loudly at me. Apparently it’s because the cat likes me, but I wasn’t all that convinced. A leisurely sunday was spent telling stories and jokes, playing games and brunching, and just un-winding… And we changed all the clocks: DACH is now on summer-time– so we are (again) 6 hours ahead of Easter Standard Time. At 6pm I was in the “INTERNATIONAL EXPRESS” line of the main train station in Zürich trying to buy a train ticket to Munich. The problem is that although Munich is rather close-by it is two countries away and so it doesn’t turn up on the touch-screen automatic ticketing terminals. Additionally I didn’t have any Swiss currency, only Euros in my wallet… And I managed to get in the only international ticketing line available at the time (clearly marked in english as being the EXPRESS line). Apparently though American families don’t seem to care that they are in an express line because the family in front of me took over 30 minutes to buy some tickets to rome… as if it were their own personal travel agency and there was nobody in line trying to get a ticket for a train that leaves in A FEW MINUTES. Fortunately a nice lady opened a second international express window which easily serviced 10 parties in the same amount of minutes: whew– I made my train. The train ride to Munich goes through Bregenz (Austria) and right by the seaside opera (the destination of my last road trip, last July). It put a nice punctuation at the end of the weekend.

Over the course of the weekend I did not have a single medical incident or episode, in fact I didn’t even need my tranquilizers to sleep, and only once took one of my rheuma tablets. So health-wise the weekend was also a great success, but I have to admit I don’t think that I would have been quite so adventurous were I totally alone: it was due to my trust in my co-conspirator that I could feel safe in taking a few more risks than normal. What an amazing weekend, it had been a long time since I’ve taken a road-trip and what a super time it was: now I can’t wait until the next one!

Thanks for your readership!

|K<

Donut_Day


So… those of us who were ((insert adjective here)) enough to show up for work today got donuts. SWEET!
The rest of Germany was of course out getting plastered in public. I’m not so into that. So I opted for the donuts…

Health-wise there isn’t much to tell. I just wanted to share the donut picture with you.

best from bavaria!

|K<

DONUT SEASON


Hey everyone! I just wanted to drop y’all a quick note to let you know that I’m doing just fine. Actually today I’m a bit hung over… I’ve been experimenting with alcohol during my chemo pause and last night things got a bit rowdy. But I survived… and I guess I’ll not be doing any more of that.

Weather here has been (although cold as a pole) rather sunny (and windy) lately. The little wildflowers even started sprouting up in the park… you can see a picture from yesterday of Lucy playing in the flowers…

Last Friday I went to a concert in the Residenz. It was a strange way to start a strange weekend. Mostly world premiere orchestra compositions, the concert was supposedly “modern” or what the germans call “new” music. But in reality, even though all of the pieces had been written in the last ten years, nothing which was played there could claim to break out of 20th century tradition. It also reaffirmed my assumption that if the avant garde is alive and kicking, it’s certainly not doing it in the Bavarian Residential Palace.

And last night I was in a disco until about 5am… which reaffirmed my stance on not liking being around masses of massively drunken people, even when I am one of them. I also assert that in a culture such as Munich, where heavy drinking is such a very prominent aspect of the night-life, music appreciation levels are also heavily altered (if not just plain inebriated). Quite plainly put: the music here sucks but everyone is too drunk to notice.

Another weekend crossed off the calendar. Thanks for checking in with me!

|K<

two point nine

TOTALLY BORING MEETING!


Today I reached a BIG milestone… I’ve been on the nether side of chemo cycles since 11 days now. And today after work and a sunny run through the park (well: Lucy ran and I observed the running) we went to a cafe for a beer. But instead of having my usual alcohol-free Weissbier, today I had a LIGHT Weissbier (2.9% alcohol). Sucker got me pretty tipsy too!
Boy did I have to leak a mighty ocean when I got home…
But nothing bad happened… I just got really hungry: ate some Käsedillas then got a big headache.
Now I’m going to bed.
Wow!

That’s all there is to report.

thanks for checking in!

|K<

inlingua


I am still here… as some of you have correctly guessed, I’ve been busy (and healthy) and spending more time living life than observing it (for like the first time in over a year!) I am totally behind on almost all of my personal projects, but not resentful of my lack of (visible) progress. Straight to the pure health statistics, my 12th (and last) TEMO-CHEMO cycle ended last sunday and so now I’m on my third day of “no chemo.” Though in reality the stuff is still slowly making it’s way out of my system: it would be a lie to say that my pee doesn’t still smell funny or that I don’t have to piss every 52 minutes, but I am now no longer ADDING temo to my system. (53 more days of freedom!) AND… although I am hardly back down to my pre-epilepsy Ghandi-esque figure, I am losing a lot of the weight I put on in the past year. But I am still battling the lingering side-effects of the cortisone: puffy-face not gone yet and I still have really bad acne. At least I feel much better about my physical appearance than I did before: I’m even going out and meeting new people (like the female kind) without being overly paranoid about being obese or pimply. Slowly but surely…

Additionally I have a musical goal to work towards: I’ll be playing a solo concert at a cultural center in Linz, Austria on March 24th. I am very excited about this and have been spending most of my free time preparing the program. It’s really coming along and I am very pleased with how things are sounding. Additionally I am taking measures to increase my social circle and at the same time figure out how German Grammar is SUPPOSED TO function: am taking German classes at the local language school: “inlingua.” I have known for quite some time that it is the central hub for single (hetero) people to meet up, but until now not taken the initiative. It also doesn’t hurt that it is only one block away from my place so I know all the cafes and restaurants and bars in the neighborhood: I’m enjoying making new friends. Now I just need to find time to keep my apartment somewhat (almost) presentable!

Work is going well, though things are a bit slow at the moment as we just last week released a new version of our Mac product, so there has been a ‘release’ of pressure and the workload will slowly ramp up again over the next weeks.

That’s how things look from over here… thanks for your readership!

|K<

Sunny Tuesday in February

Have been feeling strange all day today. Immune system is low, but that is normal for the 4th week of a TEMO cycle. Am always thirsty, must have drank 5 liters of water at work today and spent equally as much time in the bathroom. But I need to get these kidneys rinsed out. They’re starting to hurt a bit from all the traffic (I suppose).

Was at the neurologist yesterday. I asked him if I could start backing off the Keppra and he said NO. He told me that especially because I am going into an 8 week chemo pause now would be the worst time to alter my medication dosages. He said that because I have a history of having seizures it is especially important to proceed conservatively. He also warned me against any “extreme behaviour” such as lack of sleep or irregular diet. He said that after the 8 weeks of pause we could discuss MAYBE backing the KEPPRA down to 2000 mg per day (instead of the 3000 that I’m on now). But he said that for someone of my size 3 grams is a good dosage.

So… I’m trying to keep myself healthy and regular. Am exercising on a regular basis and looking forward to seeing what happens when I get out of the TEMO cycle. So: all is well.

thanks for checking in with me,

|K<

One Year Gone



I am still trying to wrap my head around what has happened today…
Obviously I’ve been lost in thought and trying to understand the implications / ramifications. This morning was my meeting at the neurosurgical polyclinic: my neurosurgeon reviewed my latest MRT pictures as well as the FET-PET diagnostic from last Monday. He told me that the from the MRT my tumor appears to be stable. And he showed me the PET pictures and this is where the big surprise was: in the PET pictures from last August, the area where the tumor is (right frontal lobe) was a big yellow spot. This time the entire picture was green– No yellow at all. This was a big surprise to both of us and he told me that it indicates that the TEMODAL treatment is in fact having a positive affect on my condition. Without wanting to be too speculative, the doctor told me that the brain tumor colloquium would look very closely at my pictures when they meet next week and regardless of the outcome, I now need to have 8 weeks of break from the chemo treatment. After 12 cycles they want to give my liver and kidneys a break and give me some time to build up a good supply of white blood cells. Although the doctor did not say this directly, my impression from him was that it is very well possible that after 8 weeks of pause they may put me back on the TEMO CHEMO again. He told me to go ahead and schedule another MRT for the beginning of April and that he would get in touch once the colloquium has come to a consensus.

Obviously this is very positive news. On the other hand, everybody: all the oncologists, neurologists and neurosurgeons have been telling me all along that it is impossible to get rid of the tumor completely. So even if it did shrink a tiny little bit, and even if it is now metabolically inactive (as per the PET): it’s still there. And although I’m guessing that doing another year (or so) of TEMO CHEMO is probably a lot less scary than GAMMA KNIFE, or LASER STROBING, or RADIATION THERAPY, the reality remains that the tumor is a part of me and I have to learn to live with it…

So although I am happy about the (unexpected) results, it takes me a lot of time and energy to process all the implications of my little visits to the neurosurgical polyclinic.

Thanks for your support and best wishes from Munich,

|K<

Gobblers Knob


Have you ever noticed that women who kiss on-screen with Bill Murray are most likely to sign deals with L’Oreal? Sigourney Weaver, Andie MacDowell, Scarlet Johannsen, &c… In light of this statistic, I just want to point out that *all* girls who have shared on-screen kisses with me have ALSO gone on to sign major deals with L’Oreal. Bill Murray has maybe like 60% average, mine is 100%. So there!

Well, it’s winter time again, loads of snow all over the place, no matter where you go: THERE YOU ARE! And in keeping in theme, I’ve been digging out the winter comedy movies, trying to keep my spirits up (it’s cold as a witch’s tittie over here, btw). Tonight’s recommendation was ‘Grumpy Old Men.’ Man that film still seriously cracks me up, AND there’s a nice message too:

the only things you ever really regret are the risks you never take.

of course tomorrow, in following with my age-old tradition… I will watch GROUNDHOG DAY again. That film gives me hope in more ways than scratch the surface. Did you know that it was written and directed by Harold Ramis (Dr. Egon Spengler in Ghostbusters)?

This week is my big ‘Follow-Up’ week for my 12th TEMO-CHEMO cycle. Yesterday (Monday) I spent having new scans taken of me noggin… I was a bit optimistic in thinking that I could get the whole business out of the way in the morning and be at work in the afternoon: HA! I didn’t emerge from the FET-PET room of Nuclear Medicine until 16:00 and didn’t get home to let poor little Lucy-Dawg out for a walk until 5pm. It seemed a bit useless to show up at work then at 6pm, so I had to can it for the day. I’ve not yet looked at the new MRT pictures, though the radiologist said that it appeared to be another stable result. So that seems positive. But I try to not get my hopes up before having my appointment at the neurosurgical polyclinic (coming this Friday morning).

That’s all the newest of the news from here, thanks for checking in with me and have a great groundhog day tomorrow!

|K<

still here…



nicotine abstinence: 366 days
alcohol abstinence: 367 days

I’ll take whatever I can get…

at this point I’m just glad to be alive and not in the ICU like 1 year ago.

thanks for your thoughts and prayers,

|K<

Nothing to be afraid of







One year ago I was lying sleepless in a hospital bed. Fasting and trying to not be afraid of what the neurosurgeon had just painstakingly and thoroughly walked me through (over the course of 2 hours…) In two hours they would wake me up to drink the radioactive coctail and in three hours they would wheel me naked to push me through “the slot” and open up me head…


If you haven’t yet, or would like to re-read… here’s my journal entry for ‘resection day’

Thanks for putting up with all my photo-booth pictures!

|K<

Snowy Snow




The main reason for this post is to say that despite my sore throat I am feeling very well and even quite chipper. Maybe it’s because the Steelers won last night? To that affect I’ll just say one thing: it is very impressive to receive at the kickoff and return with a drive that scores within seconds of the opening of the game, especially as a guest at Soldier field: it’s very psychologically wise. On the other hand, really amazingly awesome is receiving on the kickoff and making post-season rookie Sanchez freeze his booty off on the sidelines for the first 27 minutes whilst the Pittsburgh crowd is going mad– taking your sweet old time controlling the ball for almost 9 minutes of game-time before waltzing into the endzone. That was just cool.

Now I know that a lot of you out there enjoy laughing at my general inability to endure menial tasks of daily life in a modern world (you’ve been laughing at me for years now… and it’s okay.) But today I’ve made great strides! It’s no big surprise that in the first half of 2010 I put on a bit of weight: I was in and out of the hospital and recovering from surgery and eating mom-cooked meals… so it was pretty clear. But then when I started on the damn cortisone things got out of control and I bloated to blimp-like proportions: at which point I had to invest in fat-people-pants because my old trousers just wouldn’t fit me anymore… well–
now that I’m off the steroids and having diet rebound, I’m dropping weight. I still can’t fit into my old jeans from 2009 (January 2009 I had gandhi-esque proportions, btw) but I’m getting too small for my fat-people-pants. But since I’m too stingey to buy new clothes every month for my ever-changing shape I decided to take drastic measures today: I bought a new belt. So now even though they don’t fit very well, I can still keep my damn pants up! (JOY!) Okay, you can stop laughing at me now…

thanks for reading,

|K<

Done Deal (feeling better)










HEY!! We MADE IT!!
I’ve finished my 12th (and final) TEMO-CHEMO dosage week, and what a relief.
it was hard (as in difficult).
Every day this week it got rougher and harder to get to sleep at night and even harder to get out of bed in the morning. The timelessness, the aching joints, the distinct nausea, the non-existing appetite, the lack of energy. Every day I got to work later and later until on Thursday I warned my team that if on Friday I feel worse than that day I would just not even bother to come in. And therewith also explained that it was my 12th and final chemo cycle: and one of my colleagues congratulated me. But I had to correct this team-mate, unfortunately: because although, YES it is great that I won’t have to do this any more, they’re stopping the chemo because it’s not working. So it’s a very mixed blessing. On one hand my tumor is completely stable. But the theory is that it would also be stable without the chemo, so we have to find out. If that is in fact the case, then the chemo is not doing anything for me except making me feel shitty. And to actually do something pro-active against the tumor we need to get a bigger hammer. Fortunately here at the polyclinic they have the biggest hammers in the world and the most experience using them, but… it’s still a bit scary. But all of that with time… for now I get a treatment break. FINALLY. I’m now almost exactly 1 year since my resective surgery. (whew!)
So this weekend was spent (as all post-dosage-week-ends) cleaning and recovering from the dosing. And this time was particularly bad. The 5 days of chemo dosing are very similar to a 5 day drug binge: in a sense it is, except a lot less fun. It totally screws with your appetite and your sense of smell. Today after I got back with Lucy from our morning walk I came into the apartment and thought “Holy SHIT, what the hell is that SMELL??!” I looked all over the place for dogshit, though I knew that Lucy would have long ago “told me” that she had an accident (she can’t keep a secret). The problem is that when I smell something it sticks with me for a long time: and the last thing I had smelt was Lucy’s shit: we were just coming in from a walk! So when I got into the apartment and there was a strong odor, my brain replaced it with the last smell I’ve had… It wasn’t until a few hours later when I started shovelling the dishes from my kitchen into the bathtub for rinsing that I found a pot full of rice and beans that I barely remember having cooked, though it makes sense because bland stuff is about all I can stomach on the dosing weeks– and what could be simpler than boiling rice and dumping in a can of beans? And now I know that it only takes less than 5 days for said meal to turn disgustingly grody smelling.
Lucy then told me that I needed to vacuum. She does this by eating a really big dust-bunny and then puking it up at my feet. She’s such a clever little bitch… So I’ve been cleaning today. And things are looking much better around here! And I feel amazingly better. Yesterday I woke up with a bit of a sore throat (but no temperature): the weather here has turned seriously cold in the past days and if I don’t sleep with a tuke on I wake up with a sore throat. So I have a bed-tuke now.
And finally, by popular demand I’m including a photo-booth session of Lucy with this post.

Thanks for reading and best regards from Munich!

|K<

January Spring

Sunny Day Dog-Work

In the middle of January we have a reprieve. Nobody is fool enough to think that the winter is gone… but two days of reprieve from the oppressive cold, dark, rainy days we’ve had for the past two weeks is pleasant: very nice! On Sunday the weather was quite sunny and warm so lucy took me to the english garden. She was so happy to be out and about: she rolled in the “fresh grass” dozens of times. And there were TONS of people and dogs in the park: we had to avoid getting hit by frisbees and even the annoying hand drumming conga-guys were there pounding away. I wasn’t feeling very peppy (after all it was the 28th day of my TEMO-CHEMO cycle) so I found a bench and had a bit of a sit-down so I could people watch comfortably. But here’s the thing: Lucy-Dawg would not play with anybody except for me! The longer I sat on the bench the more she barked (yawled) at me. She ignored all the other dogs who were trying to play with her and just gave me a guilt trip the whole time. oy.

Rolling in the garden!


So eventually I threw her back on the tram and we went home, and the first thing we did was dump Lucy in the bath-tub. She had horrible mud and goose-shit all over her, stuck in her hair, even behind her ears: she had rolled in EVERYTHING. But after a bath she was soft and colorful and feeling good again. And we spent the rest of the night watching Tom Brady get swept out of the playoffs while waiting for that late-night-hour when it’s time to take a handful of pills…

A Sunny Day

As for me… well, I’m quite okay. Today was day 1 of my 12th (and last!) TEMO-CHEMO cycle. I feel as though the cortisones are finally starting to be gone from my body: I can climb all 5 flights of steps without pausing to catch my breath, which is a big achievement for me. ( I feel so old ) But things are getting better. I really feel the chemo this time around. I’m not sick, but I get pretty strong headaches and am very sensitive to loud sounds and bright lights (moreso than usual). But the good news is that I’ve started dreaming again: so that’s wonderful. This past cycle I got really pimply during the last weeks and so my oncologist noticed and presribed me an antibiotic: minocyclin (or so). But I’ve not started taking it yet. I am not sure if I want to… first I’ll wait and see if the pimply phase gets better or worse. I’m not in a hurry to start on a new medication, in fact I want to try to back off as many of my current meds as possible. So things are going well here: fighting through another dosage week…

Thanks for checking in on me and best wishes from munich,

|K<

Three Kings versus Black Tights

shaking and swimming!

First of all I need to preface this posting with a bit of background info: A lot has happened since my last post, I’ve had tons of visitors and the holidays, and I was sick for much of the time since the last post and I now have a lot to write about, but seem to never have any time. So please bear with me as I get things here up to date… also: I started writing this posting after lunch at which point I had not yet realized that today is Lucy’s Birthday!!! Then my phone rang and it was an old friend from home who is in town with his family, so Lucy and I joined them for a run around the English Garden. But I’ll get to the gory details later…
and oh yeah: HAPPY NEW YEAR!!!!
here’s how this posting originally started out:

Many of you may not realize this, especially those of you who don’t live in Catholic dominated countries (like Bavaria), but today is a holiday. I was (just like every year) totally caught off guard by this until my project manager came to me yesterday (at work) and asked me if I would be in the office on Friday. (HUH?!) He then explained the seriously confused expression on my face away by informing me that tomorrow (Thurs) is a holiday and that therefore most (if not all) people have taken Friday off as well in order to make a long weekend of it… To which I quick wittingly responded: “Oh, can I have off Friday?” answer: “no.” oh well.

So I started off my free day by making a list of things I want to accomplish today. It looks a bit like this:

  • Update WordPress to non-buggy version (all 4 sites)
  • take a shower
  • drink coffee
  • take pills
  • walk Lucy
  • write blog post on ‘trepanation’
  • implement ‘help’ page at snd.aetherbits.net/snd
  • finish draft of ‘On Social Synthesis’
  • sort (and pay) bills
  • prepare to mail out (tax) expenses for Q4
  • fill out new GEMA contract
  • send thank-you emails to people who sent me Christmas cards
  • answer un-answered emails from 2010 (13,257 of them)

these are not really in any particular order, but as you can see I’ve made it to the 6th point on my list. Not bad, eh?! I (like everybody else??) like to put obvious trivialities on my lists so that I have stuff to scratch off, even if I would have done them anyway. But *everybody* does this, RIGHT?! And while I’m like all into lists and stuff I’d like to share a list with you… this year’s “commuter game.” Last year I was riding the subway (U-Bahn) to and from work and so I had a different game: counting fallen face lifts. That was a pretty easy game, but I never (in 4 stops) could best a 9. Though there was always at least one to be found… the rich old ladies of Munich can provide much entertainment. But this years’ game is called the ‘black tights.’ And it works like this: this winter in Munich at least, the big fashion trend (style if you will) amongst girls of the female persuasion is wearing black tights. A few girls can get away with black stockings or dark riding pants (everybody loves dressage style!) but the “real deal” is black tights: with a mini-skirt or with shorts or hot pants or a dress or a long sweater or even nothing else. main point: black tights. So my commuter game is to sort the girlies into black tight categories:

  1. the RIGHT TIGHTS: ’nuff said. when done right the black tights are effective and impressive. they even make bony knees look hot. some girls accessorize with overknee boots, others with leg-warmers, most just go with a classic over-the-ankle black boot.
  2. almost-tights: maybe they’ve over-dieted (doubtful) or perhaps just didn’t try them on before they bought them, or simply over-estimated. the almost-tights tend to bunch up at the calves and web up behind the knee. ladies: when you sit down your knees shouldn’t look like they belong to aqua-man, okay?
  3. NOT-SO-TIGHTS: can you even call them ‘tights’ if they aren’t tight? can you buy “loose tights?” I’m guessing that a lot of the girls with the not-so-tights told their mom that for Christmas they wanted black tights and mom just got the next size up so they would fit next year too… or else the good sizes were all out. A hint ladies: if they fit like pyjamas, then they’re not the right size. Also as a general rule of thumb: teenagers, regardless of figure or shape, look great in black tights and ladies twice the age of a teenager do not.

    so there it is: this years’ commuter game is sorting womens’ fashion into FAIL categories… fun, right?!

    ( ( ( THIS IS WHEN MY PHONE RANG ) ) )

    My “old” friend called to say that he (and his wife and two children) just got into town. Crazily enough their hotel is about 40 meters away from my apartment and so I suggested that we go for a walk in the English Garden. He and I hadn’t seen each other in decades and weren’t even all *that* close back in the day, but we go back to Cub Scouts together, so we definitely had bunches to get caught up on. They are living in Mannheim for one year (sabbatical) and are currently traveling around, so I’m very glad they could stop by. Their children are lovely (4 and 1.5 years) and since the visit of my sister and her boys, I’m quite well versed in child-friendly places in Munich. What I hadn’t realized however is that the Riding School Cafe is also quite the singles cafe for very will primped girlies (whom, one would assume, are looking for boys who drive Porsches). Well… regardless of the decidedly crappy weather we had a great time chasing Lucy for her birthday and getting caught up with one another.

    AND… I still got over half of the items on my list accomplished!
    not bad.

    thanks for reading, more to come soon,

    |K<

Christmas Eve

My Christmas Presents

Although I completely FAILed on my resolution to buy a Christmas tree this year, I nonetheless had THREE presents to put under one, had I had it… (and no, an Apple laptop was not one of them). Sadly, however, there is no tree and I have been sick all week. Today is day 5 of my 11th TEMO cycle: they pushed me back by one week because I was so sick at the beginning of the month and had to take antibiotics. Which screwed EVERYTHING up… And for the past week I’ve had my VERY GOOD friend visiting me from Guadalajara, Mexico… and I’m on a shitty dosage week. I’ve been feeling HORRIBLE the whole time she was here and it makes me sad. We did however get to run Lucy in the English garden and have schweinebraten and even visit the top of the world on the Alps at Wallberg. So the visit wasn’t a complete toss, but I definitely have felt better before. And she did leave me with these two beautiful Mexican gifts: a Praying Mantis carved from wood and a ceramic pill-box which appears to be (beautifully) hand painted. I’m very grateful for these lovely presents, how cool!!

Also today the post-man came (scaring the crap out of Lucy) and brought me a gift from my old company: two bottles of alcohol and a box of candies. Great. Nice gesture… but: should you be suspicious that someone is trying to kill you if you are allergic to alcohol and diabetic and receive such a package? Well, nice gesture anyway.

going back to bed: still feeling crappy…

|K<

Return of Lucy

where you can...

Well, it’s Saturday… my first Saturday of my “new year.”
And I realized that there is something I forgot to mention in my post yesterday:
Last week I bought a DIGITAL THERMOMETER (for a whole 3 euros!)
and I had to put a picture of the instruction manual here for your enjoyment…
they show you where you can stick it… how cool!

and today Lucy came back!!

here’s the first thing she did:

MY SOFA! do not disturb!

and when I turned on the light to take her picture:

HELLO!

Sadly though, although this morning was cold and snowy: this evening the temperature turned warm and the snow has turned to rain. Now it’s just ugly and wet.

thanks for reading,

|K<

One Year Statistic

breakfast of champions

HERE IT IS!! December 10th, 2010. The one-year-anniversery of my Grand Mal Epileptic Seizure and subsequent diagnosis of my brain tumor. Exactly one year ago today I was in the Harlaching hospital having my first brain scan. How freaked out I was…
I’ve been looking forward to this day for a long time, to me it’s a big milestone: I have survived my first year with the tumor. (CANCER?) In the beginning ( year ago ) I was just taking my life (planning) day by day… and then: after I survived the resective surgery I started planning my life week by week… then when I went back to work (and started getting monthly paychecks again) I starting thinking in terms of month to month. Until now. I feel confident that I will see my next birthday (in exactly 6 months). That’s thinking in terms of half-years. A big step up from just plain old months! But that’s where I’m at. It’s my own little psychological game: what do I need / want to accomplish in the next six months… (hypothetical question: of course, I know the answer, but it’s something that I save for those closest to me.)

pills can be quite big...

And so I get this question a lot: “What’s it like to live with a brain tumor?” Well… here’s my one-year roundup:

  1. the pills are very big.

  2. there are so many big pills, it’s hard to keep track of which one’s you’ve already taken that day
  3. some of the pills give you diarrhea
  4. some of the pills make you constipated
  5. some of the pills make you clumsy
  6. some of the pills make you hyper-active
  7. some of the pills make you fat
  8. some of the pills make you skinny
  9. none of the pills make you feel like Alice
  10. most all of the pills are to counter-act side-effects of another pill

So, as you can see, it’s a pretty boring life with all these pills. I’m ready to be done with them. Now, one year on I’m fat, clumsy, weak, and fatigued. Sick of it all…


BUT ALIVE.

Snowing Again!

In the mean time let me bring you up to date on what has been going on over the past week… it’s been a REAL DOOZY!

Maybe I’ve mentioned this before, but since my last MRT I have been weening myself from the cortisone (dexymethasone). The main purpose of taking this steroid (4mg twice daily) was to reduce any swelling of my brain, as the radiologist indicated that it was difficult to deduce what was tumor and what was swelling in reaction to the resection. So for 6 weeks I was taking 8mg of steroids daily. Which had some crazy effects on me, not least of which was a proclivity for being insanely productive, eating myself out of house and home, and grinding my teeth. I also gained about 1 kilo per week during this time. So I’m quite very fat now, in case you didn’t notice… So once the neurosurgeons saw the latest MRT results, they determined that there is / was in fact NO SWELLING in the resection area of my brain and that I should be off of these dangerous steroids ASAP. …BUT… warned that cortisone withdraw is VERY DANGEROUS, and that I need to do it slowly, suggesting that I ween myself until Christmas. So I started dropping the dosage every week (on Saturday) by 2mg.

Last Saturday (6 days ago) was the day that I for the first time took no cortisone in the morning. The Friday previous I had taken 1mg in the morning and 1mg in the evening. Saturday the 4th turned out to be just about the worst day EVER. But I’m (still) not sure exactly why. There were so many factors at play. This time during my TEMO cycle is always very difficult as my immuno system is at it’s lowest point. Add the cortisone withdraw to that plus I somehow (or in lieu of these two factors) caught a cold or infection or virus of some kind and was running a temperature the whole day. I managed to survive the day thanks to a healthy supply of ibuprofin, but woke up Sunday morning in excruciating pain. Unsure of what was going on and wanting to rule out once and for all that the problem was exclusively the cortisone withdraw, I took 1mg of dexymethasone… and was able to fall asleep again. When I awoke I was still in a lot of pain, and when I took Lucy out for a (very quick) walk, getting back up the (5 flights of) steps was a serious chore. I had to stop and catch my breath 3 times and my lungs were burning like crazy. My first impression was that I must have pneumonia. Next thing I did was call with a friend and have her come to pick up Lucy: she’s been taking care of her all week (thank heavens!). The next morning (Monday) I went to the doctor for my weekly blood draw and explained to him what happened. He took an extra vial of blood to test for infection and also a sample of my (toxic green) urine. Then I went back home to bed. At 6:45 my phone rang: it was my doctor who was calling to say that I am very sick and have an infection rate of over 80% (whatever that means) and that he had just telephoned with my pharmacy and that they were holding a prescription of antibiotics for me. And to hurry: the pharmacy closes at 7pm. He also told me that it was unclear as to where the infection is actually located in me… as I have no “real” symptoms: no sore throat, no hurting ears, no runny nose… only the shortness of breath and difficulty climbing the stairs (and general delirium and dizziness). So he put me on amoxycillan and told me to rest in bed for the next few days.

….zzzzzzZZZZZzzzzzzZZZzzZzzZzzZzzZzz…
So on Thursday I then went back for a follow up blood test… and Thursday evening got a call with the results: the antibiotics appear to be working: my infection levels are, although not normal, back down to a more reasonable level: rest until next week the doctor said and told me that he would contact my neurosurgeon in regards to whether or not I should start my next CHEMO cycle on this coming monday as planned… he told me that he would contact me Friday afternoon and let me know… [ okay ]

So I rested some more. (can you tell that I was starting to get tired of resting?!) But: on the other hand, regardless of how “good” I felt laying in bed or sitting at my computer, when I got down to street level and out in the fresh air, I noticed how very delirious and wobbly on my feet I was: walking like a drunk and barely able to keep my calm- and cool-ness about me… I was definitely not yet well… Thursday night I managed to sleep quite well… Since Sunday, when I wanted to rule out steroid withdraw I’ve been taking (again) 2mg per day (1mg mornings, 1mg evenings). If this is really necessary or not, I’m not sure, but this weekend I’m going to not go cold turkey but only drop the evening 1mg… This morning (Friday) I woke up in a bit of a panic: because it’s been in my mind about whether or not I should start my chemo on Monday… I’ve been consciously worried about this, of course.

SNOW-BEAGLE!

But this morning I woke up in a cold sweat because it occurred to me that I’VE NOT YET FILLED MY CHEMO PRESCRIPTION! So if they want me to start on Monday (ie way late Sunday night) it would be impossible without the pills. So I jumped out of bed (euphemistically spoken) and ran (again haha!) to the pharmacy with my prescription. They promised to have it by 2pm tomorrow afternoon. And when I returned home and got out of the shower there was a message on my answering service from my doctor telling me that he heard back from my neurosurgeon who said that I should postpone my chemo cycle by one week until I am off the antibiotics. Okeydokie: problem solved. Only thing left to do now is rest for the weekend and get Lucy back. I’m very lonely without her, but happy to not be climbing the stairs so frequently to go for doggie walks…

So that’s the whole story… now it’s Friday night shortly before midnight: and I’m not in the hospital!!

Thanks to all of you for your love and support and prayers and cards and good-vibes and well-wishes over the past year, you have helped me more than you can know! Best wishes from Munich and love to you all.

peace,

|K<

Scenes of Snow

It is now officially Christmastime in Munich… the ChristKindlMarkets are all open for business (parasites that they are), and there is snow EVERYWHERE. So I just wanted to share a few pictures with you guys… and yes: in exactly ONE WEEK it will be the one year anniversery of my Grand Mal. I’ve almost become a 1-year statistic. I am looking forward to that moment.

but for now… here’s the pics:

Office Window during Storm

Entrance to the Office (is a Christmas Market)

The weekly Farmers Market

Guess what that blurred object is...

Have a great weekend and thanks for checking in with me…

|K<

Just another fight (against the snow!)

Monday Morning 4 inches (lucy making fresh 'tracks')

Monday morning was a big fight… 1st get out of bed on time to get to the doctor for blood control… only to find out that there was a snowstorm going on and that although the rich fashionistas had all the appropriate skin-tight leather and latex ski wear to prance around in coaxingly, the Munich snow removal team was totally oblivious… so trains were pretty much just straggling along behind car crashes and there was just mountains of sludgy goo on the streets. How much fun!! And when I did eventually get (on time) to the doctor office it was (naturally) full of sick old ladies sneezing and coughing on one another. My favorite conditions for sitting around and reading more about the most boring topic in the world: wikileaks.

Health-wise I’ve not been so good in the past days / weeks. My blood-sugar has gone out the roof over the past week(s) which has not been fun. It’s mostly because I’m easing off the cortisone which is causing a “rebound diet.” translation: IT SUCKS. going off of any performance enhancing drug sucks. The cramps are the worst though. I wake up pretty much every day screaming my head off because my legs and hands are cramping out of control. And over the course of the day the same thing happens… so I need to carry little packets of magnesium with me to try to ease the pain. Sometimes it works. Anyways, the cortisones made me gain a LOT of weight, so here’s a rare picture of the pudgy me: (remember a year ago I weighed 60 lbs less…)

being pudge-fudge sucks. I am rarely in a good mood...

Of course now due to my blood-sugar problems I’m on another medication to moderate my insulin. Which (naturally) brings with it at least two side-effects, both of which are directly related to my bowels and how frequently (or quickly) I need to run to the toilet. Did I mention that this makes me very irritable? I’ve now collected so many damn side-effects that I’m not even sure what the REAL effects are supposed to be. I just fight against the side-effects. I want off ALL the drugs. It’s been over 300 days now: I don’t even remember who or what *ME* is or should be any more. Or why he should get out of bed in the morning.

Oh yeah: this is who looks at me funny when I wake up screaming with the cramps in the mornings:

stop screaming and scratch my belly!!

The good news: today it stopped snowing, but it’s still waaaay below freezing point. Sunny and icy. Luckily although Lucy likes the snow, her little paws tend to freeze up pretty quick at which point she’s in a hurry to get home. I like that.

love and kisses from Munich,
|K<

Giving Thanks

Happy Thanksgiving to everybody back there where they celebrate the Day of Turkeys!!
I sure could go for a turkey sandwich…

Well, the past week things here have been a bit crazy. With the big exception being Thursday itself (which was a beautiful day), it’s been snowing every morning… And this is what it looks like from our Kitchen window every morning:

Smudgings of Whiteness

BUT… in the meantime (it *is* saturday now…) the freeze boundary (as it is known here) has moved it’s way down the mountains and into the city. So the whiteness is now sticking to the ground… Fortunately, by second best ‘girlfriend’ is back… since one week. Her name is HENRIETTA. And she helps me wake up every morning: she’s Italian and comes from a very noble family (Gaggia). Here’s a picture of her:

Henrietta to the Rescue!

And as you all know by now, my ‘actual’ girlfriend is a REAL DOG… and she insisted to be included in this post, by sticking her nose in my face: actually she’s begging to go outside she LOOOOOVES the snow. She loves to turn it yellow, she loves to eat it, run in it, play and jump and roll in it… and well, she just LOOOVES snow. So we’re gonna go for a walk now… after all: who can resist a look like this:

You cannot resist the beagle-nose...

Thanks for reading,
best from Bavaria,
|K<

The Monday After

This hallway reminds me of the taste of single malt.

We survived!! And it’s finished… With the help of some *really* amazingly wonderful people, Lucy and I have now managed to consolidate our entire lives here in Munich. Over the weekend we rented a big van and transported the last of our earthly possessions across Germany. It cost us a lot of time, money, physical exertion, and social captital, but we did it. At least now we have (though not yet *IN* the apartment) our things in the basement and are starting to sift through the rubble. Until now I’ve managed to transfer about 45 DVD / CD – ROM backup archives onto one of my spinning platter drives and start to take “digital inventory” of the stuff I’ve done over the past years… Problem is that a lot of optical media that I burned more than 5 years ago is now simply no longer readable. which is a shame. But nonetheless I’m finding some gems and some things that I’d presumed lost forever.

Young and Free?

So yesterday (Sunday) we spent recuperating… very sore and very tired. As a treat we cooked Swedish Meatballs. Today was Oncology day so I got my blood tested and picked up as many prescriptions as I could convince the doctor to give me. Then I spent the rest of the day at my desk slinging code just like a good code-cowboy is supposed to. I love being productive though. I’m now coming “down” off of about six weeks of cortisone (dexamethasone) and so I’m a total chemical imbalance. And I get really very frustrated and aggravated by my own lack of coordination (from the Keppra et al). But as long as I sit still I and don’t have to physically move around I am really good with my concentration levels and productivity. I just trip over my own feet every time I have to stand up.

That’s about the whole ball of wax for now. Thanks a lot for your support and readership,
best wishes from Bavaria,

|K<

Cy10: dosage week done

No Bladder Control on CHEMO

It’s finally Friday. I thought I’d never make it through this week. It’s the first TEMO dosage week that hit me so hard that I had to take a sick day from work. I think it’s because the doctor increased my TEMO dosage (by only 10mg), but at the same time decreased my Dexamethasone dosage, so I’ve been a total chemical imbalance. IMBALANCE is a great word for it too, because I feel like I can’t walk straight, talk straight, or even balk straight (and obviously rhyming is a bit of a problem too 😉

Also I still get crazy cramps from being dehydrated and/or having too little electrolytes. But at the same time I have the bladder of a 12-year old girl, so every time I stand up I have to pee.

But finally now this dosage week is over and I can eat and sleep regularly again. So I had a big (chili con carne) dinner and am about to go to bed early and not have to wake up in the middle of the night \o/

And I gave Lucy-dawg a bit of a celebration tonight as well: we left work before dark (hard this time of year!!) and went to the English Garden for the first time in 2 months. She was so overjoyed that her tail was going around in circles like a helicopter: I thought she was going to fly away. But this was important… she’d been cooped up for the whole week and tomorrow we are taking a big road trip to gather our things we have in storage on the other side of Germany: so she’ll be stuck in the car all day as well… but she’ll get to see old friends for a few hours and pee on her old turf. So she’ll get a kick out of that.

That’s all that’s fit for print at this point, thanks for reading
and best wishes from Bavaria!

|K<

Cycle10:day1

I am stable.

It’s Monday. And I had a long long long long day. Double doctor appointments today: all morning in waiting rooms. ugh. blood control: ugh. finally the Neurologist. I told him that both the neurosurgery clinic and the radiologist confirmed that my control pictrures (MRT’s) were absolutely identical to the pixel and that my results are 100% stability. He told me that this was the best news he has heard in a long time and got really excited. Keep in mind that this dude like NEVER gets excited about anything. I honestly thought that he was completely 100% non-excitable. But he told me that it is so very rare in his business that he ever hears such good news and really was excited for me. So wow!
Then he gave me my prescriptions and a new appointment and sent me out the door. Morning gone: I excited my neurologist. What a day.

By the time I finally made it to work there wasn’t a whole lot of time left in the day… but 2.5 hours of very concentrated work can be very productive for me. And it was. On a day full of meetings 2.5 hours of concentration time is something to be cherished. So going in for just a short time was actually well worth it. Otherwise there’s not much to report. Tonight will be my second dosage day. I’m always exhausted on these days, but the TEMO-chemo somehow lifts me up and gives me confidence. So I do like it. But I get so hungry on an empty stomach…

Thanks for reading and best from MUC,

|K<

Up Next: More Of the Same

Absolute Stability

Well, it’s been a long and tiring and emotional week… and even longer and tiring and emotional weekend. But I’ve made it to late Sunday night: and I want to let all of you know how my meeting at the clinic went and how things will progress. So here goes!

The take-home message is the following: ABSOLUTE STABILITY. This is very good news. Both the Neurosurgeons and the Radiologists are telling me that all three of my MRT image sequences (over the past 9 months) are pixel-perfect identical: NO CHANGE WHATSOEVER. At first this was a bit discomforting to me, as I was hopeful that the damn tumor would shrink under the influence of the TEMO chemo, but that was a bit fantasy… The reality of the situation is that the tumor is CONTAINED and not spreading and this is what we have to be happy about.

Last month the Collegium of neuroscientists met to discuss my case and in lieu of my stability under the TEMO they had decided that the best course of action is to be patient. So we have decided to continue with another 3 cycles (months) of TEMO-chemo and then take a therapy-pause. The fact of the matter is that because I started with the chemo directly after the resective surgery, it is very difficult (if at all possible) to tell if it is the TEMO which is keeping the tumor stabile or not. So after a full 12 cycles, we will take a pause and see how the tumor reacts to no treatment at all and then discuss where to go from there. At the end of January I am scheduled to have another FET-PET scan (as well as MRT control pictures) done, and these images will be used to correlate those of the past 9 months and help with deciding what to do after the 12 months of TEMO.

All in all this is very exciting: well not really exciting, but I feel very relieved that there is a plan in which I know what is going to happen at least over the next 4-6 months or so. A relief.

And guess what?! I’m within weeks of my first milestone: in 26 days it will be 1 full year since my Grand Mal Seizure: the event that started it all. I will have survived my brain tumor for ONE FULL YEAR. For me this is and has been a very big milestone… which I am still very much looking forward to.

So tonight (in about 2 hours) I start my 10th TEMO-CHEMO dosage cycle.

Thanks for reading and best wishes from Bavaria,

|K<

Totally Psychological

Better than nothing

I’ve now been nicotine and alcohol free for over 200 days now. Not sure how many, but Jan 26th until now is at least 9 months… but *SOMETIMES* after (say) a week of dodging bullets, a cold beer sure would hit the spot. In this case I’ve turned to the local alcohol free concoction from the Paulaner Brewery. And although strictly psychological, it does help a bit. But just a bit. I guess nothing can really replace getting loaded every now and again… but those days be gone. (fo real!)

oh well…

tonight I’ve made awesome baked pork chops to go with my near-beer.

and finally here’s a picture of what I found on the sofa this morning when I woke up…

Good Morning!

Thanks for reading and best from Bavaria,

|K<

Cycle9: Day 23

New Fave

I’ve now almost made it through my ninth (9th) TEMO-CHEMO cycle… And just like every month I pick a new favorite film to watch on repeat… although (obviously) there was a bit of a ‘Back To the Future’ 25th year retrospective going on around here… I’ve now turned my sights to PIXAR and have ‘Wall-E’ running non-stop. What a great, cute, insightful little film (and robot!). So cool… anyway, it cheers me up a little bit. And I’ve been feeling quite blue lately. So that’s a good thing.

I have also been working *VERY* hard on my latest project, which is a re-launch of the AETHERBITS web presence. I am trying to document my art projects of the past decades… and this is a big part of it. At this point only the SOCIAL_SYNTHESIZER is really anywhere close to being ready or documented, but it would help me if people would have a look and give me feedback (at least on the SOCIAL_SYNTHESIZER section!). Thanks in advance: here’s the link: http://aetherbits.net


thanks in advance for your constructive criticism and peer review!

The rest of the week I will spend resting, I realize that I’ve been pushing myself very hard over the past weeks and that I feel better the more rest and sleep I get, so I am going to focus on sleep now. On thursday morning I have my next set of MRT pictures scheduled and on Friday morning is my appointment at the Polyclinic to hear about my next options for treatment. I am nervous, excited, and anxious about what they are going to tell me.

but for now: sleep.

g’night and thanks for tuning in!

|K<

A GREAT day for Philadelphia!

Kent's Kruisers, post RACE FOR HOPE

I am so proud to announce that Kent’s Kruisers raised a total of $3,155.00 for the Philadelphia Unites To Fight Brain Tumors RACE FOR HOPE.

In total the 5k generated $738,803.56 to fight Brain Tumors. This is just amazing. I am so proud of my team and to have been represented there. It gets me all choked up. And it is so great to see them wearing the team colors (with LapCore.org LOGO!!) So cool!! I have such amazing supporters… The girls were wearing the yellow t-shirts with the LapCore logo on the front and 5k texts on the back whereas the boys had the LapCore logo on the back and here’s a picture of the front:

KruisersBoys

In conclusion I want to give a big special loving thanks to everyone who supported the RACE for HOPE and made generous donations to the brain tumor community. We all appreciate your support.

And oh yeah: one last thing: SUCK IT, PEYTON MANNING!

thanks for reading!

|K<

Flux Capacitor Day!

On Nov 5th 1955, Dr. Emmett Brown envisioned the FLUX CAPACITOR

As a final tribute to the 25th anniversery of time travel, I hereby commemorate FLUX CAPACITOR DAY. And that will be that for awhile… (have been watching all three ‘Back To the Future’ movies on repeat for the past week… you should try it.)

Gladly we (me+Lucy) have made it to the weekend after a very long and arduous week. And we are very happy about it. This weekend is all about cleaning up our digital and physical spaces… vacuuming, organizing backups, upgrading computers, filing documents, you know the drill… not fun, but productivity.

Also, according to the weather services this is the last weekend before the snow comes… it’s supposed to snow on Monday and Wednesday this coming week. So I’m attaching a few pictures of Lucy… (I know y’all love ’em!)

Autumn in our Dog Park

Lucy Helping Clean Up

FINALLY… ONE LAST THING:

One MORE DAY to DONATE!!
This sunday the 7th of November is the BRAIN TUMOR RACE FOR HOPE, 5k RUN in Philadelphia.
My team is called “Kent’s Kruisers” and there are NINE RUNNERS (isn’t that just so cool!!).
We are actively soliciting donations, so if you can spare a dime, just click this link and donate to a great cause, TAX FREE! Thank you very much for your support: all brain tumor survivors thank you collectively!

Thanks for your support and readership,
best wishes from Bavaria,
|K<

Today I discovered Osirix

I don’t know why it took me this long…
but I did know that the CD-ROM disks I was being mailed (to archive myself) from the clinic are in a strange format… But for whatever reason I just never got curious enough to really dig into them… until today…

((WOW!!!))

I discovered the open-source project called Osirix which is a MacOSX viewer for medical graphics. And one hell of a program!! Amazing. Now I can really have fun with all my MRT’s, PET’s, and other exciting image discs I have in my collection. It even exports movies… so cool…

Anyway, if you click on the picture above you get a higher resolution version and you can get an idea of what it looks like where my big-ass tumor used to be. Remember they removed 90% of the tumor and had to leave 10% inside (which we are currently fighting with the TEMODAL (Chemo) therapy… In this image you can clearly see where the big-ass tumor used to be… the darker areas represent swelling. I am currently (since about 6 weeks) on Dexamethasone (steroids) to combat the swelling, in the hopes that the next round of pictures (next week) will be more clear in terms of what is cancerous and what is just swelling and collatoral damage from the resective surgery. (the only real collatoral is swelling, btw: my Krasowski index is in the very highest percentile…)

Now I’m going to go back to playing with my cool brain scan pictures…

BUT there *is* ONE LAST THING…
THIS SUNDAY IS THE BIG RACE….
In Philadelphia it will be the NATIONAL BRAIN TUMOR SOCIETY’s
RACE FOR HOPE, Philadelphia unites to fight brain tumors!!


and guess what?!! I have a team and they are NINE STRONG, called “Kent’s Kruisers”

I AM SO VERY VERY PROUD!!

However, there is one sad note: not *all* of our runners have met their donation quota,
in fact there is still one runner who has committed to running but has not a single sponsor.
people: we cannot allow this to happen! Please, spare a dime (give him $10 a km = $50…
it’s tax deductible and for a great cause.)

just follow this link and sponsor my team!! THANK YOU VERY MUCH for your generous support.
DONATE TO KENT’S KRUISERS

thank you very much for your readership,

|K<