Friday, August 31, 2007

More Photos

T -1:48 and counting until last scheduled dose of steroids. I actually took a real, honest-to-goodness nap this afternoon and it was good. I might have slept an hour, but these days it felt like a full-on hibernation.

My brother sent me all his pics from the hospital stay. Here they come:

Lovely day - Another nice shot of my Dad and brother before heading in for the big event.

Smiling faces - Connie is on the left. She was the surgeon's right-hand person when it came to my patient care throughout. We're all in "head for the OR" mode.

Ready, Set, GO! - Let's do this thing.

You sleep where you can - My papa had a long night of travel. You can see outside it's a lovely day. Within hours, the Floods of 2007 had begun. Hard to believe.

What just happened?? - This was in ICU right about the time I threw my brother a curve ball by telling him my favorite team was the Red Sox. I'm not sure he's over it yet. Even an hour after undergoing brain surgery, I may still eff with ya, bro. Sorry about that.

Interesting surgery side note: That little bulb you see to the right side of my head (your right, my left) is like a valve for releasing excess blood and brain fluid from my surgery. It had to stay below 10cc during an 8-hour period before they could take it out. I remember very much wanting to get that out of there. It was a magical moment when they took it out. It's the little things.

Dressing change - The angelic Connie once again.

CSI - This looks like a shot from a crime drama. Like an autopsy. Like I'm dead. It amuses me.

Head Wound Harry

So there you have it. Thanks, KC, for coming through with more quality photography.

Go Dodgers!!

Thursday, August 30, 2007

Out Sorted

It's been an out-of-sorts day. Not so much more than any other day recently, but I guess I'm feeling a bit like my legs are not going to be there supporting me. I understand the reasons and have been expecting this but it's feeling rough.

I listened to the whole 20-minutes or so from the doctor's visit on Tuesday. It was interesting hearing it again with some perspective... time passing... getting a bit of the emotion out of the way. I was struck by how weary and drained I sounded. It's probably not as bad as it sounded to me, but it seemed pathetic.

Don't me get wrong - I was a rockstar patient. I didn't let the doctor go until I was done with him and I got several "very good questions", so I know I was doing my job. Lori and I both made sure we were satisfied that he'd told us everything he could. We asked him several questions for which I was pretty sure he'd be referring us to the Onks (our neologism for "oncology doctors") for answers, and he did. But even so, we managed to pry from him more info than we would have otherwise received.

Connie, the surgeon's right-hand person, was very good with taking out the staples and talking about recovering from surgery. She had to remind me on more than one occasion that I had just experienced a serious trauma to my brain and body - that it's not something I am going to get over quickly. She talked about taking care to not rush myself into trying to return to "normal" too quickly. I know all this stuff intellectually, but it was good to hear it again from her.

I guess it's settling in for real that these next several days are not going to be much fun. The doc said that when I come off the steroids, there's a good chance I'll have some "not so good" days. I can smell what he's cookin' and I'm not diggin' it.

I am allowing myself to indulge in just a spot of self-pity or something. I'm feeling relatively shitty. I barely recognize myself when I really look at myself in the mirror, and of course what I see looks like shit. My voice sounds like shit since surgery - sounds like somebody else coming out of my head.

After lunch today I was chatting with a handful of co-workers before leaving. I accidentally knocked something over and clumsily picked it up and put it back. Nothing really, but it didn't feel like me doing it. I am cool, calm and collected. If I knock something over accidentally, I replace it with panache or at least purposeful action. This just felt helpless and pathetic.

I am very capable of taking these observations and analyzing them for what they are. What normal person in this situation wouldn't experience a bit of self-doubt and generic "what-hell-is-happening-to-me"? And I do that analysis... can't help it. But for now, I'm also indulging in a brief interlude of feeling sad and sorry for myself.

On another note, I received a welcome message from a former employer of mine who has personal experience with the cancer thing. We're planning on hooking up next week to visit, but just for today his email was life-affirming and empowering. It was also long and exquisitely communicated. He's on the team for sure.

Yesterday I took advantage of one of the multitude of gracious offers of help all you kind folks have been bestowing upon me. One of my co-workers sent out an email to several dozen folks asking if someone could drive me to an appointment next week so my hard-working wife doesn't have to run off to the big city and miss work every time someone needs another picture of my brain. The co-worker's email was sent at 2:22 pm and at 2:24 pm somebody piped up that they'd be delighted to drive me. That's what I'm talkin' about. It's not good enough that people are so willing to help - it's that they have to go and be all eager and everything.

So much for feeling sorry for oneself.

Yikes

I don't know what's up, but it's 3 am and I'm wide awake. I'm downright bouncy.

I didn't have any sleep at all during the day to today (Wednesday) and the usual 4 or so hours the previously night. I've been drinking a bit more caffeine the last couple days, but caffeine by itself doesn't usual effect my sleep. I spaced out my meds at my 8 pm dosing so ended up taking a steroid dosage at a slightly odd time (mostly just several hours late).

As much as I want to sleep (and I really, truly do want to... desperately), I have to admit that not having to sleep as much as usual is seductive. I've long complained that life is too short to spend so damn much of it sleeping! Frequent naps and a couple hours a night ought to be plenty, don't you agree?

Part of me will miss the sweet thrumming of the steroids coursing through my body. But even now, feeling invincible and nearly messianic in my ability to focus, I'd really like nothing more than to sleep for 8 dreamless, wakeless hours of rest.

The last day on the steroids is Saturday. If you don't hear from me at all on Sunday, you'll know where I'll be and what I'll be doing.

Wednesday, August 29, 2007

That was good

My wife watches some regularly scheduled programming on the The Learning Channel and as a result, the last couple weeks I had been hearing some promos for something called Crazy Sexy Cancer. It was passing chatter in the ether and I think I took it in as something to do with astrology or something else to which I'd normally pay no nevermind.

It turns out it was a 2-hour documentary... well, here's what it says at the top of film's subject's blog:

Kris Carr (moi) is the director, producer and subject of The Learning Channel (TLC) documentary film "Crazy Sexy Cancer."

She tells her story (she calls it something like her "cancer adventure story") in an easily accessible style and it works really well. I'm sure it will be repeated numerous times on TLC at least. If you're inclined to these sorts of thing, it's well worth the time to track it down.

Of course with my current state of affairs, the subject matter was particularly of interest. It's very apparent that Kris was a pretty healthy girl when she was diagnosed. She looked swell and it was apparent when she got to the yoga part of her adventure, this yoga stuff was nothing new to her at all. As far as her cancer, it is a rare type that affects her liver and lungs and hardly spread at all once she had it. She has a very good prognosis to live a long time. She got married at the end of the film, for cryin' out loud.

Besides the obvious emotional connections with the film, there were some good practical elements that stood out, mostly lifestyle and diet. If Kris got into specific details regarding what her diet was exactly, I missed it. I did gather that she eats all whole foods with strong emphasis on macrobiotics. (Please don't quote me on this - these are my impressions.)

What really set off the bells for me was when she met this fellow who's whole deal is restoring the pH balance in the blood. These are the kinds of things I will be focused on. They just seem so self-evident and basic. I know I'm not the kind of person to go crazy trying every new possibility. Right now I'm thinking of basics... the things that will give me the big bang for the buck. Things like smoking cessation - obvious. Removing any obstacles that might keep my body from healing itself.

The more I look at Mr. Young's site, the less the original bells are ringing - he's feeling a little bit like a guru to me and my skepticism produces bells of it's own. That's OK. The point isn't any specific plan or person or holy grail. What I did lock into a bit more clearly tonight is my motivation and direction. That feels like winning today.

Vito's Time is Past

I decided the picture I was using on my blog needed a change. As much as I love the film and in particular, that character, it's was just feeling a little dark and dismal for some reason.

Six months or so ago I realized that I have a dream. I have no idea from whence it came, but I woke up one morning knowing what I want to do with my life for the first time ever. I want to raise goats and make cheese.

I've always had a bit of an affinity for goats. When I was a kid, it seemed to me (in the Christian bible) the goats got a bit of a raw deal and I couldn't help but root for them, even though I wasn't supposed to. For whatever reason, when it comes to domesticated animals, I've been a goat guy since way back.

I've long been fascinated with cheese - not just that it's yummy and cheesy, but the history, culture (both kinds), production, all of it. It doesn't hurt that I've recently found myself employed at an organization that spends a bit of energy on production and promotion of not just any cheese, but ORGANIC cheese!

So far the reality of the dream has taken the form of talking to some people and doing some research regarding what it takes to make this dream happen. It will surely take some time to get to a place where it can happen, but the point today is that the dream is alive and well.

So... re-affirming the dream and needing a new graphic for the blog, I chose this guy. What he says to me is "I am goat. I'm a pretty happy dude and basically easy to get along with. But if you look into my eyes, you see that I can be serious. I am a vulnerable and dependent animal, but you would be mistaken if you took that as helplessness. If required, I have ways get my point across - fight, if you will. Ignore what's behind my eyes at your peril."

I have a dream.

Tuesday, August 28, 2007

It's Official

What I had removed from my brain was a Stage III (of IV) gemistocytic astrocytoma*. What they removed contained malignant cells. The report showed that there were "not a lot of mitotic figures, which means cancer-type cells that are reproducing rapidly. On the other hand, this type of tumor has the capability of turning into something more aggressive." (the quote is words from the neurosurgeon interpreting the pathology report.)

Because of the location of where they had to operate, they could not get as aggressive with the "margins" (remaining malignant cells) as they would have liked. There was very serious risk of paralysis of my right side had they tried to keep going. There is no confirmation yet of any additional cells left, but the neurosurgeon said the chance that there are none left are slim to none. These types of tumors almost certainly are going to be leaving some behind.

Bottom line is we now get into the world of oncology. I got me some cancer.

First step is getting a post-op brain MRI, which is scheduled for next Tuesday. By then I'll have an appt. with the oncologist, probably in a day or so after the MRI.

I'm still trying to absorb it all, but it surely helps to get some of the mystery out of the way. I'm not thrilled at all with the outlook, but it could be so very much worse. Just the fact that it's not a Stage IV is, in itself, something like good news. So far it seems it has not gotten all medieval on my ass with aggressiveness.

On the way home, I finally was able to get some much needed weeping out into the open. Been sitting on that for some time now and it felt really awful and good.

Good news... getting off the steroids this weekend. That will be a huge relief. Thrush is much better today. Bad news is I still can't drive. :( I was really looking forward to getting that back, but I won't be seeing the neurologist who prescribed the anti-siezure meds until 9/18. So 3 more weeks of feeling like an invalid. I'm sure it would be just fine for me to drive, but they apparently need to cover their butts in case something happened. I will be a good boy.

Got the staples all out and everyone agreed the surgery itself could hardly have gone better as far as healing, etc.

I'm sure there will be much more details and excitement to come. For now, I am going to try to get some rest... barely slept a wink last night.

Then we fight.

* I'll try to find a better link to exactly what this is. Astrocytoma is a common type of brain tumor that comes in many flavors. My particular flavor is not typical. The "gemistocytic" part is the part that needs more fleshing out. There seems to be some unsettled business with these diagnoses and I'll be finding out more... just not this afternoon. :)

Monday, August 27, 2007

Something to Celebrate

Trying not to let a mere doctor's appointment loom large, but there's no denying there is a palpable sense of .... something. Lori and I were talking on the phone ... realizing there will be SOMEthing to celebrate tomorrow. At the very least, I should get at least some of these staples out of my skull. That will be swell. Nothing like trying to figure out why a blood vessel throbbing on your scalp has a metallic clank. Oh yes ... the staples.

I would be thrilled to celebrate getting off these steroids. Over time, they feel like they're turning me inside out. Started with the sleeplessness. For the first several days, it didn't bother me at all ... I felt great. But as time goes by, the body does actually require some damn rest. And when I don't get it, I start feeling off balance - literally and figuratively. Last night I was doing something on the floor and just fell over on my side. Nothing drastic, but just not right.

And then I discover I've contracted a nasty case of thrush in my mouth. Disgusting and very uncomfortable. I'm picking up a scrip for some yellow miracle gel that should fix that in a day or so. Almost certainly a side effect of the steroids.

So the steroids ... hopefully we can at least decrease dosage, if not get off 'em completely. I would celebrate that.

It's going to be good to see the surgeon again. He's a swell fella and I'm looking forward to visiting with him. Probably not cause for celebration, but close enough.

Fact is, I'm scared. Nothing to do about it but get through it and see what happens. I intend to file a full report tomorrow. More shall be revealed.

Saturday, August 25, 2007

Friday, August 24, 2007

Time to Deal

I'm addicted to IFC. Once again, I get sucked into watching some little nothing film of whom nobody has ever heard (OK, somebody heard about it but nobody cared much for it.). I've always loved Lili Taylor for her performance in Say Anything. ("No. The world is full of guys. Be a man. Don't be a guy." Take THAT, Lloyd Dobler!) And Guy Pearce is just one of those soulful, cool Aussie guys who never sounds Australian. It was a lovely little human heart story where everyone winds up wiser and relatively happy. Of course it's hard not for one of the main characters to improve after cutting some guy's name in her forehead, but still.

ANYway... I'm finding myself wanting to deal. With the weekend approaching, the surgery a week past now, and the Big Appointment looming on Tuesday, I'm trying not to obsess about what's going to happen. I know it's pointless to obsess, but I can't help it a little.

I've been in a place since the surgery, kind of feeling the worst is over and I'm supposed to be getting back to business when in fact, this could all get quite nasty. Of course we'll all be hoping the results are the best possible and away we go, but it doesn't hurt to think about possible results. I'm not talking about details or anything, just recognizing what could happen.

So what's interesting to me is how I find myself jockeying for position with the universe or whatever. I don't want to be too happy with having things feel they're going so well. I want to do due diligence to pay my dues. I want to feel some pain because I might be getting off too lucky here.

How's this sound, Universe... for starters...just a point to start negotiating: I'll feel very, VERY bad about all the stories I hear about how awful it can be for people when they get and deal with brain tumors. I could even write some encouraging words to people... give them some compassion, etc. In return, I of course, get to go on with my life with no tumor, no cancer, no nothing. Works for me.

This example is simplistic and coarse. If I was serious, I'd REALLY put some effort into it, but I'm just not sure my heart is in it.

The point is I'm horrified to even say those kinds of things. How awful that anyone ever has to go through things like that, but we do all the time... every day.

Yet here I am, still wanting to make a deal for myself.

Multimedia

I didn't post anything today, and now I've gone and gotten myself in trouble with my mom. So here's a little something I posted somewhere else the night before the surgery.

One of Lori's friend was telling us about a friend of her's who was making light of having a tumor... goofing on the Ahnold thing. So I laid down a quick track that should have been a much smaller file size, but oh well. (I made the file smaller.)

I've got a too-mah

Wednesday, August 22, 2007

Musings, meanderings, and other medium-sized words I recall

Time is passing by rapidly yet slooooooooooooooow. It seems to be expanding and contracting. It seems like I've been home a lot longer than a couple days, yet it's already Thursday.

The speech seems to be improving dramatically; this pleases me no end. No guarantees there won't be any glaring mistakes, but I'm going it alone - no more checking my work by my wife. She has been marvelous, but the time has come for the training wheels to come off.

I watched a complete, complex film - The Prestige - and I think I got most of it. OK, I did need some help with some of the plot points, but I don't think I was the only person who needed some help - brain surgery or no. Maybe I'll be back to the movie blog later, but for now, let's say it was a fine film and I enjoyed it thoroughly.

We went up to the CROPP cafe for lunch. It was divine. I saw lots of my peeps, that was very nice. I was going to try to do a PO for someone, but gave it up. Got a call from Brandy, from whom I had not heard from since before my particular unpleasantness, so I let the PO go for another day. I guess that makes me unprofessional. Tomorrow.

Many of my co-workers have some significant unpleasantness of their own from the weather. People with bridges out, losing 4 years worth of firewood gone down the river... I'm sure I haven't heard the half of it. This weather is the bollocks. It's really getting old. Please stop already.

Here's a picture from today... for my Mom. Hi, Mom! I love you! :)

I'm still having a hard getting over this whole thing. It happens so fast. I'm not sure how it's supposed to happen, but it doesn't seemed like it's supposed to happen like this. Just a few weeks ago, we would joked about "whoa... here comes a seizure! woooooo, that was weird!" Next thing you know, you're having your brain cut open. It does make one think.

Maybe it was because of our familiarity with seizures with Jordan. Of course when Jordan has seizures, it's no laughing matter, but we're familiar with it... it happens a lot. So I'm thinking it's some neuro malfunction... maybe something like a seizure, but nothing too weird. Turns out it was an actual tumor. A tumor in my brain. A big, swollen scary tumor.

So now the big scary tumor seems to be gone. We'll see what happens, but part of me feels like it's over. Let's just pretend it's over for now. Life may just go on like normal. What does that mean?

I'm indulging in a bit of blah blah blah here. It's late and I didn't intend to get all introspective... sometimes this is what just comes out. I've been watching The Deer Hunter off and on while I've been posting. That might have something to do with the existentialism or whatever it is. Meryl Streep sure used to be pretty.

When it gets down to it, I wonder how any of us gets through it all. And for what? Yet here we are. We seem to believe it's worthwhile. I know I'm in.

Tuesday, August 21, 2007

Photos

This day is much better... the speech thing. The talking is getting much better and the typing is getting better too. My wife says I'm typing like a six-year-old... I will take it. :D

I've been out and about some. Walked down by our old house. They're trying to clean up the basement after the storm. Our house got lucky. We're good.

Stopped by the OV retail store for some delicious OJ... saw some co-workers... that was nice.

I'm gonna get to the photos... this may take a while. :)

You're in for WHAT?
This was on the way in to the hospital. My dad, Dave, and my brother, Kevin, had just pulled in from their flight from Minneapolis.

Unfortunately, our camera ran out of batteries after one shot. Replacements were acquired shortly, but didn't get any pre-op shots.

First shot after surgery
I don't remember this but Lori says I was awake. This was in ICU after recovery room after OR.

I guess that qualifies as a smile.

First meal - It actually seemed rather tasty at the time. Nice they could include my pee jug with my FOOD!!

Group shots
Kevin, Tristan, Dave, Bella - Tristan was especially happy to meet his grandpa and his uncle.

Tristan, jdc, Bella - Bella... what can you say? I think I was fighting over the remote, but I was the only one fighting.

The money shot - This was pretty cleaned up compared to a couple others we had. I think we counted 19 staples.

Monday, August 20, 2007

Home at last

Got home late afternoon today. Left the hospital at about 11 am but it took a good long time to get home. Still raining on and off. Stopped off at the pharmacist to pick up the drugs for the swelling for the surgery. Had a lovely Culver's lunch while waiting for the prescription to be picked up.

I'm having to face up to the fact that my speech is having a very difficult time. This is normal after brain surgery, but I am not enjoying this at all. I would love to pour all everything out but it just doesn't work the way this is supposed to work. This sentence took about 10 minutes to write.

I'll be back soon... it's going to take some time. Sorry. :(

Thursday, August 16, 2007

T-14 hours or so

Another whirlwind day. Not surprising since everything happened so fast. I'm still feeling good about everything, although the anti-seizure medication is annoying as hell. It makes me very tired and kinda hazy dazy mentally. Jordan, my oldest stepson has been taking this stuff and stuff like it for 4 years now. I have a new admiration for his ability to remain pleasant; I'm not sure I could do it. Not to complain, but I do hope I don't have to take it for long.

We drove to La Crosse this morning for the pre-op physical. That was rather uneventful. The internist who conducted it called this afternoon and gave us the all clear. I'm actually in superb health - except for, oops, almost forgot - the brain tumor.

On our way in to the internist's office, we dropped off my prescription for Keppra at the pharmacy. (I got through last night and this morning borrowing from Jordan's stash he had lying around. :)) After we were done with all our business at the clinic, we stopped to pick it up. The counter person grabbed the bag and said it was something like $280. I was giving her my health debit card as she read off the instructions. Lori and I realized that the prescription had been written yesterday before the neurologist knew that I was going to be having surgery on Friday. The instructions were to double the dosage after a week. We knew this wasn't right since I was going to be having surgery tomorrow.

So the pharmacist offered to lower the number the pills so we wouldn't have to pay so much. She fiddled at the cash register for a couple minutes and said "This is strange. When I put in 60 pills instead of 90, it comes back that your co-pay is zero." (instead of $280) Of course we're all like "Sounds good to me! We'll take it!!" Then I realized what had happened. During the hour and a half or so between the first time they rang up the prescription and the second time, my deductible had been exceeded by the clinic putting through charges for services from yesterday. So here's a tip: If you have a high deductible and want to avoid paying money out of pocket for prescriptions, wait until the provider has put through the medical charges before you fill your prescription.

That was a mighty long anecdote with not much payoff. Oh well, I'm leaving it in.

Another part of the business at the clinic was meeting with hospital staff to talk about health power of attorney. That's where I designate who I want to have authority to make medical decisions on my behalf if I'm not able to. Lori did one for herself too. It's the kind of thing you know you should do but it's never convenient and not exactly something one wants to think about. But that's out of the way now.

I told Lori that if it ever happens and there's any significant chance that I can come back and really BE with her, then do whatever it takes. If it's fairly certain that all she'd have of me is a bag of bones, then let me go. I'd do the same for her. Of course in these situations there are often gray areas, but I'm confident we understand and trust each other to use our best judgment. They also wanted me to add a 2nd and 3rd person just in case. I put my brother Kevin as #2, and my dad as #3. I've had brief conversations with both of them today and we're all good. More about Kevin and Dave (my dad) in a bit.

We were only at the hospital/clinic for 2 hours or so today, thank the gods. We headed home and made it back in time to get the last of the cafeteria lunch at work. Saw a lot of co-workers and received much love and many good wishes. Yesterday, one of my co-workers sent out an all-staff email alerting folks to what's going on. The emails have poured in. The amount of love and good wishes has been overwhelming - in the best of ways. I'm taking the liberty of quoting here from a couple of my favorites:

Here's my favorite:

Fuckin A - you're definitely in my thoughts and prayers, such as they are…I'll whisper your name to the trees I hug and the various gods I like to keep around.

This is a close second:

I have only the most positive feelings about your surgery, I expect you to have the same.

I won't settle for anything less.

But to everyone who has sent wishes, thoughts and prayers - every single one of you, I really can't express how grateful I am. I believe all this incredibly positive energy has made and will make all the difference in the world. I know how Lou Gehrig felt when he said "I consider myself-elf-elf-elf... the luckiest man-an-an... on the face of the earth-earth-earth-earth." OK, my situation is different than the Iron Man's was when he made the speech, but still... I think I have an idea of the gratitude he felt.

The best news of the day, except for the doctor telling me it's all in my head (hee hee), is that my brother AND my dad are going to be here tomorrow morning. They're actually preparing to board a flight from Portland to Minneapolis as we speak, so to speak. This is almost too much for me... in a good way. Without going into a lengthy (though fascinating!) family history, my dad and brother are the core of my family. It was just the three of us from the time I have any memories until I was 6 y/o. I wasn't allowing myself to hope that even one of them could come because of time constraints and the exorbitant cost of flying at the last minute. I knew my brother was trying, but I really didn't think it was going to happen. Now they're both going to be here in the morning well before I go under. If I could eat anything we'd go to breakfast but we'll settle for a bit of time to catch up.

Almost forgot to mention - hair was shorn last night.

Before - After

I may make a brief post in the morning before we leave, but other than that, this is it for a couple days or so. I'll have my laptop at the hospital but have no idea if I'll be in any shape to use it or if I'll have access to the inner tubes.

Friday at 11:30a CDT, there are plans for a lusty cheer of "Go TEAM!". If you want to be a team member, feel free to let 'er rip.

Good night and good luck.

Wednesday, August 15, 2007

Come to Jesus day

I've been saying we'll know a lot more after today, Wednesday the 15th. It's Wednesday evening and, oh yes, we know a lot more.

For starters, I am scheduled to have the tumor removed by surgery Friday, August 17. In other words, in less than 48 hours it will be gone - at least for now.

The day began with the trip to see the neurologist in La Crosse. Half way there I realized I'd left my wallet at home - no money, no insurance card and no glasses. The money thing was no big deal, the insurance card thing could have been worse, but I REALLY missed having my glasses.

We got there and were a few minutes early so dashed over to the hospital to get my pictures and reports from previous visits. That went off without a hitch but did make us a couple minutes late for the appointment with the neurologist. He had moved appointments around on his schedule to get me in at that time, so I felt a little bad.

The neurologist showed us pictures from the MRI. Here's one of them that shows the tumor and swelling around it. He explained that the tumor is close to the surface of the brain. In fact, it is basically ON the surface. He used the word "superficial". This is good because it makes it very operable. He also pointed out to us the smoothness of the surface of the tumor. This also is usually a very good sign. Generally, when it comes to tumors, smooth is good, jagged/ragged/tentacly is bad.

One cause for concern - and the main reason for the urgency to remove it - is the swelling/edema around the tumor. This is adding to the pressure on the brain already caused by the tumor itself. As it is now, there has been no midline shift (good) but they want to get it out before that kind of thing starts happening.

After explaining everything, the neurologist said he strongly advised surgery and the sooner the better. He went down (while we waited) to see if the neurosurgeon was available to talk to us. He returned shortly and had one of the nurses direct us on how to get to the Neurosurgery dept. Within minutes we were in an examination room consulting with the neurosurgeon. And not just any neurosurgeon. This gentleman, prior to his time at this hospital, spent 22 years doing similar surgeries at the Mayo Clinic. He operated on Ronald freaking Reagan.

The neurosurgeon agreed that surgery was indicated and the sooner the better. He agreed with the neurologist's diagnosis based on all the imaging (second opinion!). He said he had to see another patient at noon but that he would like to talk with us some more and asked us to come back to his office at 1 pm.

We spent the hour or so in the interim smoking cigarettes, imbibing caffeine, and calling various friends and family. (Very serendipitous that new cell phones came into our lives a couple weeks ago.) At this point we hadn't talked specific timeframe for surgery. I was thinking it would be in a week or so.

When we got back, the neurosurgeon talked with us more about what to expect with the surgery. Thanks to my shiny new microrecording device, I have most of it on "tape". Finally I just asked him "What are we talking as far as timeframe?" He said if I felt it urgent enough, we could do it Friday, but that it would be just as well to do it Tuesday or Wednesday next week. He explained most people in my situation want to get it out ASAP. I asked him if I were his son, would he advise doing it Friday or Tuesday. Without pause, he said "Friday." That's good enough for me.

It was still early enough in the day that we were able to get some of the pre-op imaging out of the way. I thought he was sending me down to radiology to have a brain CT scan done. He was, but I hadn't been there 5 minutes when there he was, too. He came down to make sure everything was just so and that he got everything marked the way it needed to be. In case, you can't tell, I love this neurosurgeon guy. He kept apologizing because he thought he might be pulling my hair as he put his markers on my scalp, etc. Most physicians I've encountered who have risen to his level are at least a little standoffish and distant, if not downright assholes. My guy is not only a superstar in his field, he seems like a quality human being too. I could hardly be happier about this.

It turns out that the crap happening in my arm and face is probably seizure related. So now I'm on anti-seizure medication and CAN'T DRIVE! Ouch! Hopefully this will be very temporary. My wife is a fabulous driver but I don't know if I'm a very good passenger. :) Anti-seizure medication is normal for any brain surgery. If I don't have any real seizures for a couple weeks after the surgery, I think I'll be behind the wheel again.

The surgery is scheduled for 11:30 am Friday morning, but could very well be pushed back to as early as 7:30 am. This will depend on if an OR opens up. The surgery will take about 2 hours. After the surgery I'll go to a recovery area for a bit and then into ICU, where I expect to wake up an hour or so after the surgery. If everything has gone well, I should be able to talk and move everything appropriately. There is a small risk with this surgery that I could wind up with some deficit with either speech or sensation on the left side of my body. I'll probably spend the first night in ICU then be moved to a regular room. It's likely I'll spend 2 nights in that room then go home the following day. With this surgery, like any surgery, there are inherent risks. Things like bleeding, stroke, or infection can happen and muck things up horribly. We'll be hoping for a very routine surgery.

So it's been a helluva day, to say the least. Lori and I are both feeling relatively good. It seems that, considering everything leading up to this, the prognosis could hardly be better. If the tumor is benign and they get it all out and their are no complications from the surgery, I could be back to "normal" in a month or so. Of course we'd be monitoring things going forward, but that will be a relatively happy outcome. If the tumor is malignant - that means radiation and chemotherapy will follow the surgery.

We are in no way out of the woods yet. Today brought a lot of news that feels like good news. We are understandably feeling optimistic. But Friday looms large. I am not a pray-er, but I do believe in positive energy, and if you pray, I wouldn't feel bad at all if you want to direct some our way. Any positive energy/mojo/prayer is welcome - even a lusty "Go TEAM!!" is good.

The outpouring of love and support from my family and friends has been overwhelmingly heartening. To any of you who are reading this now, know that both my wife and I are sublimely grateful.

Here we go.... we're at it again.

CT scan day

August 14, 2007

Just returned from La Crosse after getting CT scan done on my chest. Much easier than the MRI. They shot some iodine-based contrast agent into me then slid me in to the donut, had me hold my breath for 10 seconds and that was it.

The MRI last week was something quite different. If you've ever had one, you know what I'm talking about. Mine was for my head so my head was basically fastened down and stuck in a very confined tube. Then the assault began. LOUD, harsh sonic assault. I tried to pretend it was music - and at one point it did bear some resemblance to early Pink Floyd - but there's no denying it was unsettling and scary. They did the actual picture taking in segments lasting from 45 seconds to 4 minutes each. I was in there for half an hour and probably 20-25 minutes of that was sonic battery. I expect there will be more of this in my future and that's.... OK.

Tomorrow is the big day - finally. I'll be talking with my de facto neurologist, who just happens to be the head of the Neurology dept at this particular hospital. The big question to be answered for me is what the hell did they see on the chest xray and did the CT scan clear that mystery up. Keeping fingers crossed that it's nothing and if it is something, it's nothing to do with what's going on in the brain. The other big question, of course, is "What's next?" Are we going to need to do a biopsy or even cut the thing out? Will we wait a couple months, do another MRI and see where we're at? Start some sort of chemo or radiation? Whatever we find out tomorrow, I'm determined to get a second opinion. A trip to the Mayo Clinic could very well be in my future.

Today I named myself manager of my health care team. At first I was thinking I am a member of my health care team, but I soon realized I'm not just a team member, I'm the manager. I will be depending heavily on the expertise and advice of various professionals. I will be depending on various people who are close to me for support and advice. But the bottom line is I'm the decider. I need to have as much information as possible so that if/when the time comes to make difficult decisions, I'll be as prepared as possible.

To that end, I stopped on the way home and purchased an electronic dictation device for recording office visits, which I will then transcribe. I purchased a groovy binder, legal pads, and highlighters. After tomorrow's consultation with the neurologist, I'll be picking up from the records department copies of all lab and imaging reports, copies of doctors' notes from my visits, and digital copies of all imaging (chest xray, chest CT scan, and head MRI) that's been done on me. I'll be getting copies of all that and passing it all along to my primary care physician. I want to keep copies of everything in a binder and take it with me whenever consulting with my team members.

If this shit is going to take me down, it's going to have to work at it.

Brain blogging

August 13, 2007

I just found out today I have a glioma (tumor) in the left parietal lobe of my brain.

About 4 months ago I started having some strange symptoms in my right arm and the right side of my face... numbness in the face but very odd sensations in my arm... I've been describing it as feeling like electric eels taking over the inside and outside of my arm. It lasts for 45 or seconds or so and happens about every 2-3 days on average (never 2 in one day, never longer than a week between). ANYway... back in the beginning I thought it was just interesting but when they kept happening I finally said something to my wife and we agreed I should go see the doctor.

I went to the local clinic and the doctor put me through some baseline neuro testing (Touch your nose, touch my nose, walk a tightrope, etc) and did some other tests (thyroid, EKG) and everything came back negative. She said the symptoms I was reporting could be caused by so many things that she recommended waiting to see if they got worse or new symptoms developed. Ten days or so later I reported to her that they weren't going away and there was more facial numbness than when we talked before. She set me up with a neuro consultation in the big city (La Crosse).

So 2 weeks ago tomorrow, I went and saw the neurologist, who put me through even more "touch your nose" testing and ordered a whole slate of tests - head MRI, chest xray, blood tests for Lyme, hepatitis C, and a whole bunch of stuff I'm not sure what it was. I went for the MRI last Tuesday and Thursday got a call from the triage nurse at the clinic that did the neuro consult. She told me the doctor wanted to do a CT scan on my chest. She said they had identified an abnormality on the head MRI and something they couldn't identify on the chest xray. I tried to get more detail from her and came away thinking they were saying I had a vascular abnormality in my brain and there was something on one of my lungs that might be connected to that.

So I spent the next day or so researching cerebrovascular ailments on the internet. Seemed a little scary but lots of room for "this may not be so bad... at least it's not cancer" sentiments.

Friday evening I found a voice message on my cell phone from my primary care physician - the country doctor who I saw originally. She wanted me to call her for me to report what the big city clinic had told me. I finally got hold of her this morning. She let me talk a bit about what the clinic had told me then said "Well I have a copy of all the reports in my hand and here's what it says in the reports." I've got a 1 cm glioma in the left parietal lobe. Tomorrow they do the CT scan to try to determine what the oddity is on the chest xray. If it's more of the same on the spinal cord, it's very bad news.

This was just after lunch. Lori and I were both pretty distraught and wound up coming home for the rest of the day. I have a cousin who has survived a brain tumor for almost 15 years now. I'm very anxious to talk to his parents about their (and his experience). Still waiting for them to return my call. Talked to my brother, mom, and one of my sisters. It's very difficult passing along information like this... knowing it's a bit of a bombshell.

It's all very scary of course but it helps knowing that the CT scan is tomorrow and Wednesday morning after visiting with the neurologist, we'll know a lot more regarding what's up. Been reading lots of stuff on the internet - trying to stay away from the horror stories and focus on how to go about planning and executing plans for treatment, etc. I am already planning on getting a second opinion at Mayo if it's at all possible. Kinda nice having the word "Mayo" in my health insurance plan.

Isn't life strange? The turn of a page....