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<