yesterday... all my troubles seemed so damn close

Sorry if my last post seemed a little downbeat, but hey, that’s the way I was feeling. I know a lot of people may be blaming themselves for the whole mole thing or, at the very least, shaking their heads with a “I told him to get that checked out.”

It’s not your fault. If it’s anyone’s fault it’s mine, but I’m not really blaming myself either. ‘Shoulda, woulda, coulda’ doesn’t change the past, present or the future, so let’s move on. I am going to beat this crap by hook or by crook, come hell or high water, etc., and am not against improving my chances.

The Military Hospital was 98% convinced that my brain tumor was a glioblastoma. Dr. Klener told me 80% and was saying 50/50 to his colleagues. That, along with his golden-handed reputation, made me choose Homolka over the Military Hospital. And I’m very, very glad I did. But, I digress. More on that later...

So, thanks to everyone who posted links to clinical trials and alternative treatments. I’m looking into a lot of them. When looking for clinical trials and treatment options, please avoid anything that says 'phase 1' - where they're only testing for toxicity, ‘randomized’,
‘double-blind’, ‘control group’, or ‘placebo'. If I wanted to play Russian Roulette with my life, I would buy a gun and spin the cylinder :-)

I had a pretty busy day yesterday, it being my first business day out of the hospital since January 14th. I went to the embassy. I had everything filled out and ready, but my pre-op pictures were too small. So this will be my passport photo for the next ten years:

I then had to go back to Homolka to get my RTG, MRI, and CT scans on CD to put on my server and share with other doctors and the public at large. I’m only missing the PET scan at this point. I also got a ton of papers from Pavlina at the Foreign Visitor’s Office with all my other tests, blood work, etc.

But I first went to visit Vlad’a, whom I found in great spirits and smoking on the balcony. He said he felt “reborn” and is very much looking forward to going back to Karvina by ambulance tomorrow. His new, soon to be former, roommate, Zdeněk has played Carnegie Hall. Vlad’a was not impressed, as he had never heard of it. He did, however, love the framed portrait of himself that I did.

Mom and I had lunch at the cafeteria for old time’s sake and the fact that I was late with my pills. I had two large salads with my nealko. Then it was off to Apolinářská to see Bo, Johnny and little Vinny Ceccarelli:
While we were there, Bo (who looks great BTW) got the news that she was coming home today. We were all ecstatic. Spoke to Mirek, who after a miraculous recovery at Homolka, suffered a setback where he is now, but was doing much better already. I’ll go see him tomorrow. Ah, hell, I can’t resist, yeah, I held the baby:

So, I’m out of the hospital, Ivan’s out, and Bo, Vlad’a tomorrow, and Mirek in about a week. How do I feel? Pretty good. Great, actually. I met with Dr. Nováková this morning. She gave me a full neurological exam and I passed with flying colors.

I’m sleeping better, getting much needed exercise, and back to eating more than my share. Shiner’s fading and arms are healing. Even my hair is coming back fast. So don’t jump the gun and get a sympathy cut like Vrat:

who would have done anything to get his picture on the blog :-)

back home

Aside from “The patient, who lives with his mother, is 39 and still lives with his mother” bit, there’s quite a lot of real and interesting info in the medical reports I received when I left Kateřinská on Friday around 2PM. I guess Mom made quite the impression.

Looks like I have stage IV metastatic malignant melanoma, which after the little research I did over the weekend, looks pretty bad. The histology report, of course, makes absolutely no sense to me (or to anyone else I know) and needs some explaining. Mirek’s daughter is going to try to arrange a second consultation/opinion for me with an oncologist at Motol this week - she's a nurse there.

I only spent about ten minutes with my oncologist (now on vacation for the week) on Thursday, before being whisked away to my CT scan, only to spend another ten minutes with her when I got back almost an hour later. We’re to meet again on March 4th and chemo should begin on the 11th. She seems really nice and very knoweledgable and is located at Karlovo Náměstí, my usual hospital, close to my apartment. Chemo would just be once a month, but cost a fortune.

I’m going back to Homolka tomorrow to try to get all these tests and reports sent to me electronically, so I can have them translated and share them with other doctors. I'm looking for a clinical trial in the US, but found the little research I did both overwhelming and depressing.

I wanted this to be over. I wanted to write the stories from Intensive Care like "Mike vs. the Bedpan" and "Me and My Catheter," but I'm still getting over the surgery, while preparing myself for more unknowns.

I’m also going there to visit Vlad’a, who was back in the ward and already smoking on the balcony yesterday when I spoke to him. He had his stitches out today - through his nose of all places. I need to catch him before he chomps the bit back to Karvina, as I did his portrait and framed it over the weekend.

So, back at home and still living with my mother :-) and actually getting record amounts of sleep - four hours in a row last night, followed by another one and a half. It was a really beautiful day in Prague.

I went with my last Kateřinská roommate, Ivan (the guy with the strokes), Martha and my Mom down to the river to feed the swans. Unfortunately, everyone else in Prague had the same idea and all the swans were stuffed by the time we got there.

remember that mole?

The one on my arm I removed myself with some string and a hair a while back? Well, that was probably the primary tumor, a melanoma, that made the baseball in my brain, another tumor in my left lung and a few in my lymph nodes. They came up on the PET (that’s a high-tech nuclear thang – Positron Emission Tomography) scan I had last Thursday and then were confirmed by the CT (Computed Tomography) scan I had this week.

So, the bad news is that I still have cancer and plenty of it. The good news is that my brain is clean as a whistle (I don’t really see how whistles are all that clean, but you know what I mean). I had an EEG (Electroencephalograph) and yet another CT scan yesterday and everything checks out.

So I’m checking out and going home. As this is a neurological clinic and my problems are now mostly oncological, there’s not much point in me being here. I’ll still have follow up visits with Dr. Nováková at Kateřinská and Dr. Klener at Homolka and should start my chemo for the rest of it mid-March.

Vlad’a beat my time out of Intensive Care (JIP) by only staying there an hour before moving to SIP. He turned his phone on and got my SMS shortly after two in the afternoon. So that’s a relief.

Last night my roommate and I listened to the Cure – “Mixed Up” twice, while the actual concert was going on just a few metro stops away. I had had to sell my ticket obviously, but it was the next best thing :-)

histology today

Well, I’m back at Kateřinská, in my old room and in Květo’s old bed of all places. Everyone here was really happy to see me. My roommate is a 24-year old retired soldier who gets strokes at least once a month and little ones almost daily. He’s very nice.

Vlad’a, my roommate from Homolka is, as I write this, having his second brain tumor removed this year. I spoke to him yesterday and he was pretty nervous, as one would expect. I’m pretty worried about it as well and will call the hospital later to find out the results. He owns two blue grass / country western bars in Karvina, outside of Ostrava, and we’re planning a big party there with Mirek after this is all over.

Miluška, one of my favorite nurses here, came at 5:30 this morning to draw three vials of blood from me. Nothing came out at first, so she had to poke around a bit until she could get some.

It looks like I get my histology today at some point – probably within the hour. One thing that I failed to mention after the operation was that it looks like the baseball in my head was actually not the primary tumor. Everyone was so happy that the operation was a complete success; I didn’t want to spoil the party.

It’s going to take me a bit to digest the news, so I wanted to get this out in case you don’t hear from me again today. I'll try to write soon.

thanks and sorry

Thank you everyone for all your words of encouragement, support, and concern. You have no idea how much it meant and still means to me. I feel absolutely terrible that I haven’t been exactly timely with my updates, but plan to make good on it.

Almost forty nights with less than four hours sleep, often none at all and never more than two in a row, had literally turned me into a lunatic the last couple of weeks. I long ago developed a tolerance to their anti-anxiety medication (Neurol), both types of sleeping pill (Stilnox and Hypnogen) and whatever they’re shooting in my ass at 10PM knocks me out for only about two hours. I actually had my best sleep on the operating table.¨

That said, I had my stitches (actually just one long one in 20) out yesterday. I haven't been in a fist fight, that shiner happens to all of us after brain surgery...

And my roomies, Vlad’a and Mirek, who I will miss terribly when I leave this place tomorrow for Kateřinská.

the perfect operation

There doesn’t appear to be any actual damage whatsoever. At first, I felt a little tingling in my lower left leg, but the movement was fine, so I thought, “Well, he had to cut something – that’s what I would have picked.” That’s gone away already.

The swelling has gone down and they’re already lowering my corticoid medication, albeit supplementing it with others that typically follow major brain surgery. I’ll provide a full list of what I’ve been taking for the last five weeks soon.

Katka, the night nurse here, removed my last ‘kanylka’ last night. I’ve had about twenty of these hideous monsters, which they always seem to put in the most inconvenient of places.

mikey's back!

Hey everybody!

Sorry this update is a bit late, but things weren’t and still aren’t exactly clear. I’ll write all about my wild adventures on the operating table and the crazy days and nights in intensive care in future back-dated posts, but people probably want to know what’s going on now:

The operation? So far, so good. Actually, it really couldn’t have gone better. Dr. Jan Klener (my neurosurgeon) truly is a miracle worker – ‘golden hands’ they call him around here. The tumor (which was actually the size of a baseball!) was probably completely removed according to the follow-up MRI, which I still haven’t seen, but will have shortly. So, before and after shots coming soon!

Unfortunately, they still don’t know the histology, meaning they don’t know what type of cancer it is or was, so don’t know what the follow-up treatment / next steps are. This could take up to two weeks. So I'm not really out of the woods yet...

I got out of all forms of intensive care yesterday morning and am back on the ward with two fantastic roomies yet again. Looks like I’ll be going back to Kateřinská next Wednesday :-)

I haven't really slept in over a month and it's taken its toll on my sanity. They're going to give me a shot in a couple of minutes, so I gotta go, but I’ll write soon. I promise :-)

post-op

The operation was a success and Mike is now in intensive care and will be there for the next couple of days.

(Editors' note: We've seen him, he's awake and alert and wants to provide further details himself, so please bear with us until he is able to post.)

blog under the editor's knife

Thanks everyone for all your comments on my blog! My operation is, apparently, in a couple of hours and I just wanted to take a little of the time I don't actually have to let you know how it's going to work while I'm out:

When I go under the knife, my mother (Mary) will give daily updates to Mary (Campbell) who will post them on my blog as I will be (with any luck) completely unconscious both during and after the procedure.

Mary (my mother) despite being retired and Mary (Campbell) despite her part-time job probably have more time to do this anyway.

Instead of the daily, "Mike had the operation and is now in intensive care, and doing very well, but visits are limited to 10 minutes and he probably won't recognize you anyway, because he'll be sleeping." every day. The Marys will post some funny and not-so-funny (but will hopefully seem, at the very least, incredibly ironic in retrospect) anecdotes from the past few weeks.

These will be posted according to the dates and times they actually happened - so you're gonna have to mouse around a bit if you want to read them :-)

Thanks,
Mike & the Marys

operation: tomorrow, 11.2, pre-op at 6 & op just after 8

...details to follow, but I still have all my hair :-)

pre-op q&a with mike

Q. What is the hardest thing about being in the hospital this long?

A. I would have to say the muscle atrophy – not that I had all that much to begin with. The doctors and nurses advised me not to carry anything, not to overexert myself – not realizing exactly how inactive I’d been before. My mother follows their orders word for word and carts everything herself from home to hospital. She won’t let me lift a finger and neither will most of my friends. It’s a little emasculating – and hasn’t been at all healthy. Lesson learned: get some exercise, if you ever find yourself in a similar situation :-)

Q. Do you find yourself being a little short-tempered with your friends and mother?

A. Indeed. Especially with my mother, because I know that whatever I do, she won’t abandon me and is in it for the long haul.

After a month of practically no sleep, waking every hour in a pool of sweat from terrible nightmares (or just ‘cause), the potentially terminal illness, and very strong medication is a pretty bad combination.

I also tend to put the ‘Mike’ in ‘micromanage’ - had I done that before all this started, everything would have been a lot easier.

Q. How do you deal with the stress?

A. This is the toughest job with the longest hours that I’ve ever had – and the rub is I’m paying through the nose to do it. But I don’t really have a choice, so I just take it one day at a time - to cite the cliché title of the 1970s sitcom.

Q. Has communication with your doctors been up front and open? Has language ever been an issue?

A. As this is my absolute first hospital(s) experience, I don’t really have anything to compare it to. But Czechs tend to be a lot less blindly optimistic than Americans, so when they are hopeful, you can really believe it.

Most of my doctors speak English very, very well. The ones who don’t, speak Czech clearly and slowly and always ask me if I understood what they said. If I’m not 100% certain of what they said, I just ask for clarification until I am. My Czech is actually pretty good after twelve years here and I love all of the compliments I’m getting.

Q. Any complaints about the care you’re getting?

A. No, but again, nothing to compare it to. My only complaint is that they don’t really give you an exact time for anything. “Chvilku” (basically meaning “just a couple of minutes”) can be up to a four hour wait. When you have to go to the bathroom, that’s quite a long time.

Strangely, the transfer on Wednesday went like clockwork - I’m just not used to that. The ambulance was fifteen minutes early, so I had to woof down my breakfast pelmeni, finish packing my bags in a rush, quick tear jerk with the nurses (who cheered me) and we were at Homolka by 7:45. Unfortunately, they didn’t have my room ready, so I had to wait until the more typical ambulance drivers showed up at 11:45 to take the other guy away.

That’s when they rushed me through a ton of forms after I had had literally nothing to do for four hours except beg to go to the bathroom and watch the SUPER TUESDAY results in four languages. Thankfully, I had already been to the bathroom (the guy who was in my room and waiting for hours for his ambulance let me) just prior to the form filling.

When I finally checked in well after noon, the woman who had denied me a trip to the bathroom for hours handed me a cup and said she wanted a urine sample. I made her wait.

Q. Is there any bright side to this experience?

A. Absolutely! As someone who places a very high value on self-awareness, a completely life-changing event like brain cancer pushes you to your very limits and really teaches you who you are as a person.

later kater

Before I go off to another hospital, I think I need to say a few words about where I've been the last three weeks - my new and now former, yet potentially future home: the neurological clinic at Kateřinská 30.

The doctors, nurses, babička receptionists and the Ukrainian cleaning woman here at Kateřinská are incredibly kind, caring and compassionate and have really helped me feel comfortable and very much at home here - and I'm not all that easy to live with.

My doctor, MUDr. Lucie Nováková, is a star and an angel - actually my accolades could just go on and on and I honestly have to say that I don't think I could get through this without her.

Despite the potential progress in my goal to get the golf ball out of my head, I'm actually going to miss this place and the great familiar staff, but maybe not the breakfast...

I am, however, very confident that I'll be back here very soon for my recovery. That's the latest plan anyway :-)

transfer? operation? who knows?

As of 7AM on SUPER TUESDAY morning, the situation looks like this:

I should be transfered to Homolka Hospital tomorrow morning - ambulance at 7:30AM, but they're often late or have to pick someone else up (or both), so you never really know. I have to be there by 8:30. Surgery could happen as early as Thursday 7.2 (possibly Friday) after I (hopefully get to) speak with the doctor tomorrow.

This seemingly sketchy information is the clearest I've had so far. Things seem to change every ten minutes: times, dates (I was supposed to have the operation on 21.1), hospitals (at the Military Hospital), doctors, and costs (from free to CZK two million).

The only constants are the size of the tumor, the surrounding swelling and the diagnosis. However, the fact that this type of brain tumor is supposed to be the most aggressive form around and has not grown since my MRI on 10.1 is fairly encouraging.

I will (hopefully) have more relatively concrete info tomorrow. Please stay tuned...

ch-ch-ch-changes

Those who have spent time with me lately may have noticed a few changes. Here's a top 9 list:

1. Art Garfunkel-style lack of haircut - I'm trying to enjoy it while I still have it :-)


2. I'm pounding non-alcoholic beer like there's no tomorrow and actually starting to enjoy it! My favorite by far is Radegast (Birell). If you want to bring me something, a six-pack of Radegast Nealko (blue cans) will always do the trick!


3. The combination of no sleep, very heavy drugs (the corticoids), tremendous guilt for having dumped all this on my closest friends, the shame of accepting help, not being able to listen to the thoughtless and inappropriate crap that comes out of a lot of mouths, all along with the nightmare of a potentially terminal illness, has indeed made me a tad cranky.


4. I'm not e-mailing people, responding to text messages, or even answering my phone. But that doesn't mean that I don't appreciate it (maybe not the calls), I do. I hope you all understand that I'm incredibly busy at the moment and the foreseeable future and simply don't have the time.


5. For someone who hadn't had a shot since 2000, I now have track marks like a junkie.


6. I really hate myself for having to tell people who want to visit me that they can't - just because there's only so much I can take right now.


7. I used to enjoy repeating myself. Right now, I can think of no worse torture. That's what the blog is for.


8. My greatest pleasure right now is consoling people who are confronting immeasurably less serious issues. I'm not kidding.


9. I often play the tumor trump. You'd be surprised how often it actually doesn't work :-)