I haven’t slept more than four hours a night since this all began on the 10th, and my mother even less. It’s long started to not only greatly increase our stress, worry and frustration levels, but our judgment as well. We waste a lot of time arguing about the small stuff, the big stuff, skirting around the issues, finding fault and pointing fingers at ourselves and each other. Then I apologize profusely without actually knowing if I really mean it.
You need to have a clear head - a little harder to do with a golf ball-size tumor in the middle of it - to go through this kind of crisis. You need to slow down and take a step back, look at the larger picture and gather as much information as possible prior to making any irreversible life decisions. Seems kind of obvious in retrospect...
Tuesday, January 29, 2008
Thursday, January 24, 2008
american embassy to the rescue!
At 4:24 in the morning on January 24, my mother accidentally sent a rough draft of a letter explaining my 'medical problem' to the US Embassy's Department of Citizen Services.
The letter begins, "My son, Michael Thomas Gisondi, U.S. Citizen, D.O.B. 5/12/1969 was diagnosed on January 10, 2008 with a brain tumor..."
This was their generic response - almost 5 days later:
Dear Mr. Gisondi,
Unfortunately, we don’t believe there is anything specific the Embassy can do in your case. We have attached to this email the list of hospitals we know of here in Prague, which may be useful if you feel you are not getting proper service. We would recommend always being in close contact with your insurance plan, which also may be able to give you guidance or work on your behalf with the hospital.
Regards,
Consular Section
Wow! So that's what we pay taxes for! Funny that it probably would have been my job to cut and paste that crap to people with real and serious problems, as I was the only one in Prague (out of five - really six, but I'm not counting the girl who flipped out during the psychological section) who actually passed the Foreign Service Exam in November 1999.
The letter begins, "My son, Michael Thomas Gisondi, U.S. Citizen, D.O.B. 5/12/1969 was diagnosed on January 10, 2008 with a brain tumor..."
This was their generic response - almost 5 days later:
Dear Mr. Gisondi,
Unfortunately, we don’t believe there is anything specific the Embassy can do in your case. We have attached to this email the list of hospitals we know of here in Prague, which may be useful if you feel you are not getting proper service. We would recommend always being in close contact with your insurance plan, which also may be able to give you guidance or work on your behalf with the hospital.
Regards,
Consular Section
Wow! So that's what we pay taxes for! Funny that it probably would have been my job to cut and paste that crap to people with real and serious problems, as I was the only one in Prague (out of five - really six, but I'm not counting the girl who flipped out during the psychological section) who actually passed the Foreign Service Exam in November 1999.
Sunday, January 20, 2008
sunday's service
Many, in times of uncertain crisis, find their strength in a "higher power;" I find mine in the sheer beauty of life, the love and support of my friends and family and the strong sense of belonging that comes with being an integral, yet small part of the larger whole.
But, whatever helps you get through this, keeps you strong and together, will also help me.
Please feel free to contact me through this blog. Don’t worry if I don’t respond directly, just know that I got your message and am thinking of you, too. Please stay strong, positive and hopeful for yourselves, each other and for me, in whatever way you choose. That's the best support I could possibly want.
But, whatever helps you get through this, keeps you strong and together, will also help me.
Please feel free to contact me through this blog. Don’t worry if I don’t respond directly, just know that I got your message and am thinking of you, too. Please stay strong, positive and hopeful for yourselves, each other and for me, in whatever way you choose. That's the best support I could possibly want.
Thursday, January 17, 2008
maintain your rituals
That had been my first overnight hospital stay ever. With no sleep, pumped full of steroids, and not having had a crap in two days, I was eager to get back to my ‘morning ritual’, which involves lots of fresh, strong, real coffee and a couple of cigarettes to get things down there going and kick the day off.
The morning coffee served with breakfast (two rohlíky, pad of butter, jam or honey) on the ward is called ‘white coffee’ – I’m having one now as a matter of fact! It’s not bad, but it’s very weak and doesn’t really do the trick. The process for getting a much stronger ‘Turkish coffee’ (where they pour boiling water directly on the grounds and then you wait about 20 minutes for them for them to settle and inevitably have a mouth full of coarse coffee grounds after) is not really worth the effort (took me over an hour) and for some reason you can’t get it for breakfast.
I was then informed that there was an ‘automat’ downstairs for next time:
So the following day, I went downstairs, and to my surprise, the ‘automat’ was offering 12, that’s right, 12, different kinds of instant coffees, plus soup. From ‘latte macchiato’ to the ‘grand expresso s mlékem’ (my personal favorite and actually the only one I’ve tried – it’s supposed to be a ritual after all). Instant Starbucks (which we finally got here in Prague last week) in a box.
The manner of extracting coffee from this contraption is counter-intuitive to say the least. You need to select your selection to find out the price, but absolutely everything is a single price of 12 crowns, so that seems a rather unnecessary step. You then have to put your money in the adjacent candy machine, which is not actually connected to the coffee machine – they’re not even touching each other.
You then return to the coffee machine and have a random amount of seconds to lower or increase the desired sugar level (default is level three out of five, my preference is zero), before reselecting your coffee, waiting for the little plastic cup to drop (hopefully straight down) and start pouring. Any owed change is eventually returned via the candy machine after the coffee is ready. And then it’s off with my coffee for the morning smoke, just a few feet away.
The morning coffee served with breakfast (two rohlíky, pad of butter, jam or honey) on the ward is called ‘white coffee’ – I’m having one now as a matter of fact! It’s not bad, but it’s very weak and doesn’t really do the trick. The process for getting a much stronger ‘Turkish coffee’ (where they pour boiling water directly on the grounds and then you wait about 20 minutes for them for them to settle and inevitably have a mouth full of coarse coffee grounds after) is not really worth the effort (took me over an hour) and for some reason you can’t get it for breakfast.
I was then informed that there was an ‘automat’ downstairs for next time:
So the following day, I went downstairs, and to my surprise, the ‘automat’ was offering 12, that’s right, 12, different kinds of instant coffees, plus soup. From ‘latte macchiato’ to the ‘grand expresso s mlékem’ (my personal favorite and actually the only one I’ve tried – it’s supposed to be a ritual after all). Instant Starbucks (which we finally got here in Prague last week) in a box.
The manner of extracting coffee from this contraption is counter-intuitive to say the least. You need to select your selection to find out the price, but absolutely everything is a single price of 12 crowns, so that seems a rather unnecessary step. You then have to put your money in the adjacent candy machine, which is not actually connected to the coffee machine – they’re not even touching each other.
You then return to the coffee machine and have a random amount of seconds to lower or increase the desired sugar level (default is level three out of five, my preference is zero), before reselecting your coffee, waiting for the little plastic cup to drop (hopefully straight down) and start pouring. Any owed change is eventually returned via the candy machine after the coffee is ready. And then it’s off with my coffee for the morning smoke, just a few feet away.
Wednesday, January 16, 2008
tea time
Mike and his mother, Mary, in Mike's room. The jug next to the flowers can be filled with tea from the urns just down the corridor. The tea is actually not bad.
Tuesday, January 15, 2008
check in
I was taken upstairs, met my new roomie, a retiree from the Škoda factory in Mladá Boleslav named Květoslav, which means ‘celebration of flowers’. A wonderful, wonderful man. I had never met anyone named Květoslav before in all my time in Prague.
They went to take my temperature and, out of habit, I put the thermometer under my tongue. My mother made me keep it there, while Martha politely suggested, that it was probably for under the arm. I fumbled with it for about 15 minutes. Oh how we laughed!
No sleep, but maybe some lucid dreaming, a lot of sweating – bed soaked. No crap that daythe skinny on skinny
Sorry I've been a little out of touch lately, but I've got a brain tumor and have been rather frantically trying to wrap things up before some pretty risky surgery. Time to face reality and weigh the options, while remaining hopeful and positive.
When I got my MRI results around 4PM on the 10th of January at the neurological clinic, the first thing I did was call my Mom. Trying to think of what to say (not usually a problem for me), I decided then was not the time for any sort of PR spin on the crisis and just came out with it. She dropped everything, was on the next plane and after several transfers, was in Prague the morning of the 11th, having come all the way from Fort Myers, Florida. John Lowe picked her up at the airport and brought her to my apartment.
We then went over to Nemocnice Na Františku, where after an hour's consultation with another neurologist, prescriptions prescribed, another consultation arranged at the Military Hospital with the neurosurgeons for Monday, and potential insurance issues looming, we called it a day.
Monday morning (the 14th), bright and early, it was off to the Military Hospital with my mother and Irina (eventually replaced by Martha), where we had a 20 minute consultation with a neurosurgeon, Dr. Netuka, who had also consulted with Drs. Beneš and Kozler. I was told to be admitted to Na Františku for observation and intense anti-edemal therapy - IV cortico-steroid treatments and other various drugs to counteract the side effects of the steroids. I was to have the operation after a week of this at the Military Hospital with the aforementioned doctors.
Upon our return to Na Františku, we were given a complete runaround and refused admission by the head of the neurology department (not the doctor I had seen on Friday, who was actually very nice) and told to take my chances at Krč. 'We voted', she blurted, 'we voted!' Her rationale for Krč (Thomayerova) was that, back in the day, when they used to handwrite your residency address in your passport, that was my last one (Prague 4) - that visa having had long expired (in 2003) and been replaced with newer ones replete with pictures, yet no addresses. She refused to arrange any of this for me and threw us out around 5PM.
As I hadn't slept in days, was unbelievably stressed and frustrated at this point, Martha made arrangements for me to go to Krč the following morning. Not really feeling very confident in the illogical rantings of a crazy woman (the head of the neurology department at Na Františku, that is, who never gave her name), I called Dr. Horáková - the original doctor who had arranged and reviewed my MRI with me on the 10th. I called her shortly after 6:30 AM on Tuesday and literally begged to be admitted to her hospital at Kateřinkská 30, part of the massive Karlovo Náměstí system that covers a large part of Prague 2. She had everything arranged in an hour and I was admitted to her hospital on Tuesday, January 15th at 8:45 AM.
When I got my MRI results around 4PM on the 10th of January at the neurological clinic, the first thing I did was call my Mom. Trying to think of what to say (not usually a problem for me), I decided then was not the time for any sort of PR spin on the crisis and just came out with it. She dropped everything, was on the next plane and after several transfers, was in Prague the morning of the 11th, having come all the way from Fort Myers, Florida. John Lowe picked her up at the airport and brought her to my apartment.
We then went over to Nemocnice Na Františku, where after an hour's consultation with another neurologist, prescriptions prescribed, another consultation arranged at the Military Hospital with the neurosurgeons for Monday, and potential insurance issues looming, we called it a day.
Monday morning (the 14th), bright and early, it was off to the Military Hospital with my mother and Irina (eventually replaced by Martha), where we had a 20 minute consultation with a neurosurgeon, Dr. Netuka, who had also consulted with Drs. Beneš and Kozler. I was told to be admitted to Na Františku for observation and intense anti-edemal therapy - IV cortico-steroid treatments and other various drugs to counteract the side effects of the steroids. I was to have the operation after a week of this at the Military Hospital with the aforementioned doctors.
Upon our return to Na Františku, we were given a complete runaround and refused admission by the head of the neurology department (not the doctor I had seen on Friday, who was actually very nice) and told to take my chances at Krč. 'We voted', she blurted, 'we voted!' Her rationale for Krč (Thomayerova) was that, back in the day, when they used to handwrite your residency address in your passport, that was my last one (Prague 4) - that visa having had long expired (in 2003) and been replaced with newer ones replete with pictures, yet no addresses. She refused to arrange any of this for me and threw us out around 5PM.
As I hadn't slept in days, was unbelievably stressed and frustrated at this point, Martha made arrangements for me to go to Krč the following morning. Not really feeling very confident in the illogical rantings of a crazy woman (the head of the neurology department at Na Františku, that is, who never gave her name), I called Dr. Horáková - the original doctor who had arranged and reviewed my MRI with me on the 10th. I called her shortly after 6:30 AM on Tuesday and literally begged to be admitted to her hospital at Kateřinkská 30, part of the massive Karlovo Náměstí system that covers a large part of Prague 2. She had everything arranged in an hour and I was admitted to her hospital on Tuesday, January 15th at 8:45 AM.
Thursday, January 10, 2008
virtual visiting hours
On New Year's Eve, I had a neurological exam. The theory at the time was that I had MS, but I had to wait until January 10th for an MRI. They discovered what they expect to be a "glioblastoma multiforme" - a little larger than a golf ball (3,65 x 4,68 x 3,716cm) deep within the center of the left hemisphere of my brain. The 'edema' or swelling, however, was very extensive and greatly affecting the right side of my body, while putting pressure on my optic nerve and causing double vision.
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