Saturday, September 23, 2006

We Are... Penn State!!!

*** Click on above photo to reveal the tumor's name ***

Had to get this in last second prior to the 3:30 kickoff. Got a new bandage in the spirit of the game.

Much more to come...

Name That Tumor...

It should have a name. Truthfully, I created this post on 9/19 but did not make it public. Even more truthful, it could be a fun contest, but I think it's already been named with the help of my recent reacquaintance with Fred Whitten. But, suggest a name anyhow. I'll reveal my choice later.

** UPDATE - The name is on the blog in a photo, click on photos to zoom on them **

Saturday 9/23 AM Update

Went to bed around midnight and then woke up, feeling well rested. I figured I must have slept until at least 4 or 6 AM. Nope, 1:44AM. I thought this was over...

So now it is 4:10AM and I've completed some exciting projects and lined-up some good posts for the site. I've got a page full of notes and special activities for the day. I'm sure I could just keep buzzing right through everything, but although I made the effort to turn on my PC and post, I'm going to pull myself away and try to sleep. I REALLY need to make a conscious effort to do this, my brother has been telling me so and he is right. I'll chalk it up to the drugs or the tumor, or maybe I have gone insane...

Keep checking back today, there will be some good posts. I'm looking forward to a day of college football, culminating in the Penn State vs. Ohio State game at 3:30PM. And I plan on being obnoxious about supporting Penn State. A little clue is that I may be the first Penn State fan to have "painted" their face. ESPN College Game Day is televising from Columbus, and I've already set the DVR to record it (10AM 'til noon). Not that I won't see it live. I'm pumped for the game and wish I could invite everyone over...

If anyone who is local is looking for something to do, go to the Varsity Club at Sunset Point Road and US19 and tell them you know me. You'll be welcomed and have a great time. It's a nice atmosphere, the menu is huge, and we've never had a bad meal. I'd love to be able to go... Really, if anyone could go and grab a meal and mention me, I'd appreciate it.

Maybe I have become a bit "touched," as my friend Angus would say in his Scottish accent...

Unfortunately, you can't experience his delivery on this page.

Friday, September 22, 2006

The BEST Cookies Around...

Send someone these cookies and they won't forget you...

"Who did you have to sell your soul to in order to make cookies that good?"
-quote from a satisfied Nielsen mailroom employee

And they ship nationwide, 727-787-7688, so don't be shy.

Thank you Inna

Friday 9/22 AM Update

HEY, Nobody noticed that my daily posts had the wrong dates! They were titled Monday 9/18 Update, Tuesday 9/18 Update, Wednesday 9/19 Update, Thursday 9/20 Update and Friday 9/21 Update. Today is the 22nd. You're all fired... Had to fix it myself.
They must have bruised my Medulla Oblongata on Monday.


Went to bed last night about 1:00AM and slept until 4:14AM. It's a relief. It may not sound like much, but I can tell I will finally be able to get some normal rest and my body needs it. My steroid dose is down until they ramp it up for the next surgery, which will probably go from 2mg twice per day to roughly 24mg in the 24 hours just prior to next Tuesday's surgery. Don't take my word for it, but that's what the dosage was last time.

I don't know exactly what the steroids do, but they definitely make you wired. I'm sure that my normal 4mg/day dose has me moderately wired, so imagine what 24mg in 24 hours does just prior to surgery. This is not to mention two types of antibiotics and some other medicines and they have to be taken on a very specific schedule to optimize their effectiveness. And the antibiotics tear up my digestive system, although my only ill effects from them have been an upset stomach. And I still have the upset stomach even though I take Zantac every time I take the steroids. Not so bad, since nausea has been a symptom since May. I actually haven't been nauseated much, the main symptom has been heartburn-like, which is annoying but tolerable. As long as it doesn't change drastically.

There are not many foods that I can eat. Well, I can eat anything I want but there's not much that appeals to me. My sense of taste is not normal and if I find something that I can stomach, I stick with it. I pretty much know everything I will eat from now until next Tuesday. This morning will be a plain bagel with peanut butter and grape jelly (homemade 'Budville' grape jelly from my dad's house) and a glass of milk. Lunch might be a 6" Subway turkey sub, which is as exotic as my meals get. Dinner 'will' be a single can of Progresso Rich & Hearty Chicken Noodle Soup with the addition of about a cup and a half of instant white rice sprinkled with Gumbo File seasoning (Gumbo does not imply spicy, 'File' is ground sassafras and somehow I mixed it into my soup to spruce it up a little). I alternate my daily breakfast between the peanut butter and jelly bagel and a cinammon raisin bagel with cream cheese on it. Interspersed throughout the day, I may have some instant pudding, Ensure, or small snacks. Seemingly not an exciting diet, but it appeals to me.

My father went fishing yesterday morning and caught some sea trout and a 23" Blue fish and he asked if we wanted to have the fresh fish. Nope, I just want my soup. Have to stay the course.

This morning's photo is the welcome brigade, Karl. He's already back asleep beside me. He must be really bored... These cats have no motivation.

Stay posted. Although I will be making an effort to get a lot more rest, I've got things to do.

Karl must have saw that I disparaged his character because he just showed up with one of his toys...

Thursday, September 21, 2006

Thursday 9/21 AM Update

I fell asleep around 12:45AM (Note corrected time, I had mistakenly typed 12:45PM initially). I woke up feeling rested at 2:48AM. I was hoping for at least 4:00AM. Figured I do a quick post and then try to rest some more, but it's now 4:44AM...

So I staged this "sleeping" photo in semi-nightshot mode on my camera. And then I started taking photos of me taking the photos and taking the photos...

It's the steroids, my mind is on overdrive. But I am going to lay back down now.

The Most OCD Photo Sequence Ever...

I took an excessive sequence of photos about how I took the "staged sleeping" photo in the above post, but now I'm just annoyed by the whole thing. You're better off not seeing them, so here's a portal into my bedside world with Karl, the only one sleeping.

Wednesday, September 20, 2006

Bright Eyed and Bushy Tailed...

Here's my typical dinner of Progresso Chicken Noodle Soup. One of the few things I can stomach. Feeling better and piecing together the last few days...


UPDATED! Click to Zoom the photo...

So you're saying there's a mark on my head?

Went to my primary care physician to get a new dressing.
Thank you Pam...

Infra Red Photography

So, here's a link to a web page I created for some of my infra red photos about a year ago. Instead of utilizing the visible colors that our eyes can see, infra red photography is beyond the red end of the light frequency spectrum. I just like the effect. The pictures end up looking black and white, but leaves are white, the sky is black, and water is black.

IR Gallery

People have been doing IR photography for years, mainly using SLR file cameras with special infra red film. Lucky for me, digital cameras can also be sensitive to IR light and I purchased one of the best cameras available for taking this style of photo, a Sony F828. Okay, there are better cameras, but the F828 has a special mode that makes it better for IR photos.

Sony's infamous 'night shot' mode mechanically removes an IR blocking filter from in front of the image sensor. In this state, the image sensor is extremely sensitive to IR light, which is how these Sonys can see in the dark (plus, they cheat and use an IR illuminator). Anyhow, I place my camera in Night Shot mode and then I place a filter on the front of my camera to block all visible light. In fact, the camera is so sensitive to the IR still coming into it, I have to further knock down the light with an ND4 and an ND8 filter. If you take these three filters and hold them up to the bright sun, you only see a dim purple circle, like welding goggles. But through the camera's image sensor, you see your shot. I have to do some minimal post-processing on the files to remove a greenish hue, but I try not to do much.

So that's IR photography. There will be more on it. Thanks to John Buonasera for turning me onto it, and Mike Hicks as well. John uses a Nikon D70, but he has to take longer exposure photos to get a similar shot. The only problem with that is movement. Tripods are a must.

Sony stopped putting Night Shot in their digital cameras. They should really keep the feature and make it a proper IR mode, not something that still needs to be kluged together. There is a demand for it and if Sony changed the software (minimally) in their F828, you could just press a button and BAM you're taking IR photos. I don't think Sony is going to get with that program.

Luckily, Fuji has gotten with that program. They have a special DSLR camera for forensics use that is sensitive from IR through the UV spectrum. It's billed as a scientific camera, but IR is IR. I haven't had a chance to read up on it, but I think I may have to check it out when I'm better. Good news for John Buonasera as the Fuji camera uses Nikon lenses.


So I had to reference my other PC for a link to th Fuji, and my other PC rebooted and crashed. Seems Creative changed some driver so my sound card now kills Windows XP Professional. I don't have time to mess with it now, but Windows sucks! For this Bill Gates is the richest man in the world?

One more link. Funny, I tried to post my MRIs on my homepage last week, and although Frontpage said it uploaded them to my homepage, it never updated. See Windows reference above. Anyhow, I did find that a previous site that I created for a local photographer in my neighborhood is still being hosted there. Don Naumann takes spectacular photos of lightning, using a Hasselblad film camera. Check out my old site for him. I think he has a better one now, but I'll give this old one some visibility. My favorite photo is August Midnight. This was the first website I created.

My Don Naumann Site (Old, but good)

Don Naumann's Current Site

Wednesday 9/20 AM Update

Just a quick post... 'Went to bed around 12:30AM, woke up at 1:28AM. Sent an EMail and made a todo list, then laid awake in bed until 6:30AM. A bit boring, but hopefully my body was resting even though I was awake.

Tuesday, September 19, 2006

Coming Soon

It may be premature, but I just acquired the domain name This site will supplement this blog with more content and background. It will have a more traditional web feel with more links, pictures and multimedia content. The blog will not go away as it is still very easy to post to, plus I really enjoy everyone's feedback. I just have to build the other site. I'll post to the blog when it's ready. Thanks to George Logue for the web hosting info.

The Back of My Head

Just a quick post to illustrate the wound on the back of my head as we left the hospital yesterday. Other than being stiff, it doesn't hurt much.

Neurosurgeons Much Smarter than Rocket Scientists

Received this valuable article from a co-worker.
Neurosurgeons vs. Rocket Scientists

Tuesday 9/19 Morning Update

So I'm awake and slowly moving around a little. 'Just wanted to follow-up on yesterday's posts so people didn't take them the wrong way. I didn't want to come across as too negative. A large portion of it must be the medication because I was up again last night until 3:30AM, and if I didn't force myself to drop everything and try to get some rest, I wouldn't have gotten the two hours of sleep I might have.

I've always been a night-owl, but this is a little bothersome. Anyhow, thanks again for everyone's support. I will check-in with the blog as I can and rest as I can. I'm feeling physically better than yesterday, but there are still lingering side effects I need to talk to my doctor about. Strangely enough, the thing I think about the least is the large incision in the back of my head, other than the fact that my neck really doesn't move. I guess since I can't see it...

Speaking of not being able to see it, there will probably be pictures of it here later today. For those of you who don't know, I really enjoy photography and although I have forays into more serious pictures, my other problem is taking pictures of everything...

And I don't place any blame on the hospital. I know they had an orchestrated team of 'who knows' how many people and they dedicated the entire team to me for the entire day yesterday. It's unfortunate that there were equipment failures, but I would certainly prefer that they not reach for an adjustable wrench when they couldn't find the proper 11/32" box-end wrench. I just hope the tools are in order for next Tuesday.

What's In That Tumor?

In the spirit of humor, please post a comment on what the tumor might be composed of, especially if this were a cartoon. Think of weird stories you've heard of vestigial twins found in people's stomachs made up of old hair and teeth.

My first attempt was a few weeks ago - chicken breast and pretzel salt. Two foods I've been accused of eating fairly often. Somewhat derived from a friend who says I don't eat enough beef.

The same friend said it was an Eat 'N Park meatball from their midnight buffet. Right size, probably similar composition. A Pittsburgh tradition. If you've ever eaten one, it's still with you somehow.

Monday, September 18, 2006

Monday 9/18 Evening Update

This is going to be a very quick update to be elaborated on tomorrow. There were two technical problems at the hospital today and the surgery had to be aborted. I was under anesthesia and they cut down to my skull, but then the problems occurred and they canceled the operation just prior to entering the skull. The problems were with their tools and their MRI, and they couldn't work blind.

Needless to say, I was very surprised to be coming out of anesthesia in ICU at 12:15PM. I was alert enough to know that something wasn't right and then the doctor told me it had to be postponed and it was a let down. He then mentioned that they would try again Tuesday, so I assumed tomorrow and felt a little better. Unfortunately, it is now scheduled for next Tuesday, 9/26. As if the last three weeks of waiting weren't enough...

I spent the rest of the day on antibiotic IVs in a hospital bed, but was able to come home until the next attempt. The back of my head is stapled together, and there are multiple other holes in my scalp. My mouth is entirely numb from being intubated and I was also catheterized for urination. After being at the hospital from 6:00AM until 6:00PM on 45 minutes of "sleep" you might imagine it wasn't a fun day. I am physically abused, exhausted, and disappointed, but it's all beyond my control. I'm still in good spirits, but I don't have the energy to contact anyone except via this note. My blog has some updates from today. It will be the SINGLE BEST place to keep track of everything.



I appreciate everyone's support, but today shows how quickly the circumstances can change. I am on high doses of steroids that create anxiety and the inability to sleep. And I'm also taking several antibiotics an pain killers. I went to sleep last night at 3:30AM, woke up at 4:15AM, left for the hospital at 4:45AM, went through admission at 6:00AM, operating room at 7:30AM, and then had my body put through a wringer. So, please do not call. Email is okay, or leave a comment on the Blog. I will be using my cellphone for outward features only and I will only be sending updates from it to the blog. It's the only way to not incur call backs.

I really do appreciate everyone's support and I guess I instigated some more by sending a global Email last night, but please stick with the blog. No doubt I will be able to Email more updates in the next few days and I will call those of you that I can, but I need a break for now.


Email Address UPDATE

Note that the previous email link for me on the blog was mistranslated by the webhosting service and did not work. My Email is I will try to put an active link in the future.

Almost Out, Day One

Nearly released. Tarzan Garb.


Thanks Penn State Suncoast Chapter for the awesome PSU-themed bouquet! Mini-Joepa included...

Visit the Suncoast Chapter!

Failed Attempt...

Quick update. Hospital equipment failure, mission aborted. Rescheduled for NEXT Tuesday. They cut to my skull, but aborted prior to drilling. I am on IVs for a while, but will go home tonight.


Support Crew...

Laura and Big Monkey. He was crafted by my grandmother in the late '60s and she was crafted a few years later by her parents.

Check In @ Moffitt

Scott, Dad, and Laura. I'm in front. Roughly 6:00AM Monday at Moffitt admissions. I don't know about you, but it looks like they're making me balance a little precariously there...

Bag of Hair

Just before leaving for Moffitt on Monday morning. We trimmed a good portion of my remaining greasy hair on Sunday afternoon 'cause it wasn't getting any cleaner...

Fiducials Galore

OK, maybe I'm not so tough. Dry shaving my scalp with a utilitarian razor was no fun.
These Fiducials are markers placed on my head that were scanned into an MRI for reference points last Friday. The appeared as points of light on the MRI. They have to stay on my head through Monday's surgery...

Monday's Procedure and History of the Tumor

Hi everyone and thanks for all of your support and well wishes. Unfortunately, I have found myself out of time to get everything done I wanted to do before being admitted to the hospital. My last resort is to send this global Email to give everyone an idea of what procedures will be taking place at the hospital. I don't want to catch anyone off guard, but I was recently diagnosed with a brain tumor and this could be the worst way to let people know, but it happens to be the easiest technique. There are no gory details here, but if you're sensitive to potential unpleasant news, please disregard this message. Note that I am not expecting unpleasant news, I just don't want to upset anyone.

I really wanted to get a website or two up and running to provide a lot of background on my symptoms, diagnoses, and expected treatments, but I didn't have the time. The closest thing I have is this site I can update it from my cell phone with comments and pictures, but I don't know when I'll get to it. Under the "MRI Post Attempt" entry, clicking on the word "link" toward the bottom of the paragraph will open an animated scan of one of my MRIs. I colored the tumor red in this scan.

My surgery is being performed at Moffitt Cancer Center in Tampa. I have to be there at 6:15AM Monday morning and the surgery is scheduled for 8:15AM. The surgery will last 6 to 10 hours and then I will be in intensive care for 3 days. After that, I will be in a private recovery room for at least a week. I don't think it will be Club Med, but the room will supposedly have high speed internet access which could come in handy to stay in touch with everyone.

Laura has been taking excellent care of me. My father, Bud, and his girlfriend, Karen, are in town for the duration of my hospital stay. My brother, Scott, is also in town for the week. Tomorrow will be a much rougher day for them than it will be for me since I will be unconscious. I should regain some consciousness in the evening.

The tumor is located in the fourth ventricle of my brain, which is centered toward the rear of my head, in between my medulla oblongata and my cerebellum. The medulla oblongata controls involuntary functions such as breathing and heartbeat and the cerebellum has a lot to do with motor skills. To see it on an MRI, the tumor is obviously impinging on the surrounding structures quite a bit. It is roughly 3.5cm in diameter, or nearly the size of a golf ball. The surgeon does not expect to get it all out as it's not worth the risk to the surrounding critical functions. They will attempt to get as much as possible, erring on the side of safety. "Maximal safe resection."

The doctors will be shaving the back of my head and drilling a hole about an inch in diameter. When I was in the hospital Friday for pre-operative consultation, they stuck "fiducials" or points of reference on my head with adhesive. Had I known they were going to do this, I would have shaved my hair back quite a bit to make it easier for them. As it turns out, they DO NOT want me to attempt any type of shaving so as not to introduce any chance of infection. I couldn't leave well enough alone, so this evening I had Laura trim my hair to about 1/4 inch. No chance of nicks there.

Due to the location of the tumor, the doctor suspects it is likely an ependymoma. This type of tumor is normally benign, but the doctor was very hesitant to give any definitive answers because they can't tell exactly what it is until they extract it and perform a full biopsy. Depending on the type of tumor it is and how much they are able to remove, further courses of action may very well need to be taken. The most likely would be to target the remains with concentrated levels of radiation. This process cannot start until 3-4 weeks after surgery, but it is done with precise instrumentation that does its targeting without intruding into the brain.

I guess I'm gradually working backward, so I'm just going to jump back to the beginning and then move forward again. My initial symptoms showed up in the middle of May. I suddenly became nauseous all of the time. I also had some dizziness, but not enough to be alarmed. My Primary Care Physician pursued stomach issues and prescribed Nexium for me. After 10 days of Nexium, I insisted that it had no effect, but he kept me on it for another month. When he finally referred me to a specialist - a gastroenterologist, it took me a month to consult with the specialist due to his scheduling and then almost another month to have an endoscopy, which basically put a camera down my esophagus into my stomach. By this time, it was the second week of August. The endoscopy was negative for any stomach irregularities. I didn't think I was imagining things...

From May through now, the nausea has been persistent and strange. I've had a lot of heartburn in the past, but the nausea was accompanied by a worse kind of pain deeper in my stomach. We went on several small trips throughout the summer and none of them came close to being as enjoyable as they should have been. I had to eat bland food and a lot of physical activity would wear me out. This culminated, unbeknownst to me, in July when Laura and I spent a weekend in Sedona, Arizona prior to a business trip I had. When we arrived in Phoenix, it was 118 degrees. Luckily, Sedona dropped back to about 100 degrees. We spent about 4 hours hiking on red rock formations on Saturday afternoon and toward the end of the hike I was feeling weak and delirious. We went back to our car and I lost my portable GPS, but I didn't even car to look for it, which should have been a sign. Luckily, a good samaritan found the GPS and returned it, but my hiking was done.

Symptoms started to get worst toward the second week of August. I stopped going to the gym because the exertion would make me physically sick. Then I started to get pounding headaches. Then the headaches started to occur more often and more severely within a couple of weeks' time. On Monday, August 21st, I set up an appointment to see my PCP on the 22nd. I told him about the headaches and he did some routine tests. Toward the end of the exam, I mentioned that I thought my balance might be off, so he focused on that. The telling test was a DUI-style walk a straight line, heel-to-toe. I almost fell over. He schedule a CAT scan for the next day.

I had my CAT scan around 2:15PM on Wednesday, August 23rd. I threw up when I arrived for the appointment, and then again as I left in the parking lot. I made my way home and laid down. My doctor called me at 3:28PM to tell me I had a brain tumor. He scheduled me for an MRI the following day and recommended a local neurosurgeon, but he wasn't available for a week. It turns out that Laura's boss knew a neurosurgeon in the same practice and he was able to fit us in the following Monday morning at 9:00AM. This initial neurosurgeon was very straight-up and said he wouldn't be offended if I got a second opinion. It was a nice way of prodding me along. He recommended I see the top neurosurgeon at Moffitt Cancer Center and got me in there Wednesday (8/30) morning at 9:00AM.

Dr. Steven Brem at Moffitt has outstanding credentials and prior to meeting with him, my father was able to drive down. Together with Laura, the three of us asked as many questions as possible and Dr. Brem had answers for all of them. We had immediate confidence in him. Just to be thorough, we also researched other options as well. In Florida, our second choice was Jackson Memorial Hospital in Miami and our third choice was Shands Hospital in Gainesville. A friend of a friend also got me a consultation with a neurosurgeon at the Cleveland Clinic, which is widely renown as the number 5 brain tumor hospital in the US. Unfortunately, the Cleveland Clinic introduced many other extenuating circumstances, not the least of which was potentially having no insurance coverage there. We spent so much time in a whirlwind of research that we just had to make a decision and move forward with it. So I'll be at Moffitt.

I'm going to wind this down as I probably should try to get some sleep. Since I'm going to shotgun this message to a lot of people, I'm not going to give any contact phone numbers. If you have one, you can call, but things will be hectic for a while. I suggest Emailing or referring to my blog - although it may not be updated for a while. If I can't do it, I'll have Laura or Scott update it. I'm not all that familiar with Blogs myself, but if you visit the blog, you can leave comments that other people can read and provide feedback on. It can be a nice community. I'm still going to try to post a few pics tonight. One last shameless plug since I have lost casual touch with some of you. Cards are welcome, although blog entries can suffice. Anything will take my mind off of the situation...

Hopefully, I will be able to talk to some people within a few days. I don't know how quick I'll ounce back, but I do hope it is quick.

Thanks again for everyone's support.