O, Happy Days

Where shall I start? Let's get the medical stuff out of the way. Basically, no changes. I'm in the middle of my third cycle of chemo - three more to go after this. So far the side effects have been minimal. Keep in mind that I've become accustomed to a little mush brain and an inordinate urge to nap, but it's been that way since about half way through radiation. This chemo doesn't seem to be effecting me too dramatically. That's good. Next MRI is the last week of February.

No noticeable difference with the removal of Keppra from my regimen. That's good. So that's it for the medical stuff.

Back in November, I applied for Social Security Disability Insurance. I was advised that it usually takes 4-5 months before one gets a decision. This past Monday, I got a call letting me know I have been awarded benefits. By my calculation, that only took a little under 2.5 months. Score. I should get my first check the first week of March... 2 weeks after my short-term disability from work runs out. Not bad.

I also applied for medical insurance through SSI back in November. That is still pending, but it may not matter one way or the other because... I may be going back to work! I applied for a part-time position at the same company that still (nominally) employs me. I don't want to say too much about it until there's a decision, but it sure sounds like a perfect deal - for me and for the department.

Besides the fact that I think I can do spectacular work in this job, another major upside is that as long as I'm scheduled to work at least 20 hours a week, I get to keep my medical insurance benefit exactly the way it has been. This would be huge. This is why the SSI medical insurance may not matter.

I was also pleasantly surprised that the thought of returning to work makes me happy. I am tickled at the prospect of being useful again to the coop. More potential happy days.

There's been a situation in our lives that started not too long before I left on my big road trip to the West. I haven't talked about it because of it's sensitive nature. Today it was resolved in a most satisfactory fashion so I'm going to talk about it a little.

OK, maybe I won't say that much about it after all. Let's just say that Lori's world has been rather hellish since returning from a medical leave of absence earlier this month. In a horrible situation, Lori acquitted herself heroically. Next Monday she will return to her former position in the cheese room. Considering what she went through, I think there's no other way to describe the outcome than "victory". She still has a job at the coop, it's a job she'd rather be doing anyway, and she walks away with her integrity and self-esteem intact. I couldn't be more proud of or happy for her. My hero.

A New Record!

I knew it had been awhile since I updated but I really didn't think it was THAT long. I told my dad last week I just don't have the volition to update. That's what it is. No volition.

Not a lot of news on the brain tumor front. Second cycle of monthly chemo was last week. Since I never really felt like I recovered from the first month, I can't WAIT to find out how I'm going to feel later this week or so. Maybe it won't amount to much difference.

Some good news is that I'm getting off the Keppra (anti-seizure med). I had another EEG last week and my neurologist gave me the green light to wean myself off it. This is a drug I've been taking since before the surgery. I do remember a mild side effect when I first started taking it - just a little wooziness; I haven't really noticed it at all since the surgery. It will be interesting to see in a couple weeks if I notice any difference getting off the Keppra.

I'm just finishing the 3rd book (The Amber Spyglass) in the His Dark Materials trilogy. The first book in the trilogy, The Golden Compass, was released as a major motion picture back before the holidays. Tom Sawyer meets Back to the Future meets Lord of the Rings - all basted with a generous glaze of Paradise Lost. Good stuff.

Time passes

Nothing spectacular - good or bad - to report. I prefer boring sometimes, so that's OK.

I spent a good portion of my holiday bonus check on a 22" HD flat screen monitor. So far it's making me very happy. Now I'm afraid I won't have any use for my precious laptop. I'm sure I can find some use for it.

Here is a photo that was taken within weeks of my finding out I had a brain tumor. Don't I look fit as a fiddle? It was only 5 months ago but it feels like a lifetime. I really miss my hair.

BTW, the scouting report on me is good glove, adequate arm, hits OK but not for power, more quickness than speed. But if I can get to it, I'll catch it.

I suppose an update on my treatment etc. is in order. The first week of December I did 5 days of 350mg/day of Temodar. (This dosage is nearly 3 times what I was taking while doing the radiation therapy.) So far what ill effects I've experienced have been I what I expected - fatigue. It set in a couple days after I stopped taking the Temodar and has let up only a little.

I always feel like a complainer since so far the only ill effect has been fatigue. Somewhere in my mind, "fatigue" = "lazy".

I'm feeling pretty good over all, but still not feeling anything like normal. One of the oncology nurses at the cancer center put it well: "The tincture of time". That's the only way past it. So I expect it's going to be summer before I can even think about feeling normal again. If that's what it takes, so be it.

Also, the next 11 movies on my Netflix queue are titles of one word, except for the first one - that one has a "The" at the beginning.

And since I'm now in a very good mood, here's a nice picture of some goats.

MRI Redux

The poobahs on Team Jeffrey have weighed in. They have seen the MRI and saw that it was good. Very good. In fact, one of them (Dr. Minehan, radiation oncology) said that there was no way it could be better. *applause*

Let me repeat that. He said, and I quote: "There is no way this MRI could be better." *long applause*

The aforementioned poobahs are Dr. James Novotny, medical oncologist; Dr. Kiernan Minehan, radiation oncologist; and Dr. Timothy Moynihan, medical oncologist at Mayo Clinic. They are unanimous that high fives are in order all around. *high fives all around*

(Can you tell that Team Jeffrey is very happy about these recent developments?)

My 2 medical oncologists agreed that a reasonable course to follow is to do 6 months of 350mg (!!) Temodar 5 days a month. What I'll probably do is dose the first Monday-Friday each month.

While we do the chemo, we'll be checking labs monthly. Gotta make sure the blood counts stay normal. My radiation oncologist wants to see a new MRI every 3 months for 2 years, every 6 months for 5 years after that, then a new one every year probably for the rest of my life.

Since I find myself talking about the rest of my life... For the first time in months, I feel like I can relax for a minute or two. There's a part of me that has been preparing me to accept that I could very well be done here in the next couple years. It's starting to look like a different outcome is more likely. *applause*

I'm not talking about not having a positive attitude; I think I've done alright with that. But those of you who know me won't be surprised to find out that I see myself as a fairly pragmatic person. I'm generally optimistic, but am by no means a "wish upon a star" kinda guy.

Things feel different now. As long as I'm asymptomatic (e.g. no seizures, killer headaches, etc) and the MRIs continue to come back clean, I'm going to plan on being around. *blank stares* Just kidding. *standing ovation*

Meanwhile, tonight let's celebrate all the folks out there who are working tirelessly to figure out this brain tumor thing. Like this guy, for instance.*

I read a lot about other people's experiences dealing with this particular ugliness and for many, many of them, it is heartbreakingly cruel. We need to make it go away.

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To close, I'd like to share some goat footage.



*Now a $5 donation will get you an awesome wristband. I'm wearing one now and feel even sexier than normal.

MRI Day - CLEAN!

There it was.

The arrow points to the empty space where the tumor was. The radiologist and my neurologist agreed unanimously that the white outline is something like scar tissue from the surgery.

The absence of any swelling is great news. Additional white areas likely would indicate growth of leftover cancer cells. The fact that there is little if any additional white doesn't mean there ARE no cancer cells, but it does mean there's no visible evidence of any further growth.

Friday I'll see the onks and get their opinion. I expect to also learn what my medical oncologists prescribe as far as more chemotherapy. I fully expect they will want to play it safe and put me on something like a 5/23 (5 days on, 23 off) for the next six months or so. As long as it doesn't make me sick as a dog, I suppose I'm OK with that. We shall see.

The good news is there is no evidence of further growth. If we have to balance the good with the bad, I suppose the bad news is that there's no guarantee for future MRIs. If the bad news never gets worse than that, I'll be thrilled.

I don't know if it's the chanting, the praying, the flaxseed, or something else. Whatever it was, let's celebrate it.

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Obviously I've returned safely from my journey out west. Except for the incident with the deer, I don't see how things could have gone better. But for a day or so, the weather was exceptional. I was in a bit of a race with some nasty weather on the way home but made it in plenty of time.

The best part was spending time with my family. Friday we celebrated the holiday with my folks, three of my siblings and their offspring.

I gotta give out a little special shout out to this guy. Often he acts like he doesn't want to talk to me but when it came time for me to leave he ran over and gave me a huge hug... had me pick him up to get it right. Then he insisted that his daddy take a picture of him and me. *sniff* *gulp* I think he likes me.

If you've never experienced sunrise on the high plains, I highly recommend it. I was tempted to take pictures but I know I'm incapable of coming close to capturing the reality. Breathtaking and gut-wrenching all at once.

All in all, the trip was a huge positive. I feel like my quality of life went up a couple notches because of the experience. At the same time, it is wonderful to be home. My reunion with my wife was joyous.

There's no place like home.

Another Post!

I'm sitting in Starbucks again. I'm on the phone answering questions regarding my SSDI application. I gotta say, these civil servants rock. Talk about a thankless job. As for me, I shall redeem the time while I wait.

Very happy news on the deer damage. No, I can't confirm that the deer is alive, but I can say that replacing the head lamp was about as painless as could be. The part cost less than half of what I was expecting. The NAPA guy and I were able to install the part right there in the NAPA parking lot. We didn't even need any tools.

Here is how it looks now. Marvelous, no?

And here's a shot of some of the lovely people I'm visiting.

I've Been One Poor Correspondent

I have no excuse. Yes, there's a lot going on around. Yes, I'm still tired always. Really the only reason I haven't updated since over TWO weeks ago is... because I haven't updated. Now that nobody is checking in anymore, I think I'll do an update.

About a week ago, I found out when my short-term disability at work was going to expire. I knew it wasn't going to last forever, but for some reason when I found out the actual date, it kinda brought things into focus. I realized that if I wasn't feeling a lot better by then, I was probably going to be out of a job with no income and no insurance.

When the whole Cancer Experience started, the social worker at the cancer center told me it would be smart to get the balling rolling for Social Security sooner rather than later. When I looked at the SS web site, it seemed to me that I couldn't apply because I was still working, so I didn't bother. (Since then I've learned that one can still apply even though one is still working.)

Last week I realized I needed to move on this issue. I had already been feeling weird about not working regular hours. It started to seem unfair to me for my boss to not be able to really depend on me being there on a regular or full-time basis. After discussing my concerns with her (my boss) and consulting with human resources at work, I decided it was time to take a leave of absence until I am ready to return to work full-time. This allows my employer to put someone in place to do my job while I'm away and also allows me to get the ball rolling with SSDI if I find I'm unable to return to work when short-term disability insurance expires. Since it's a leave of absence, I'll still be covered by my current health insurance.

So I'm not working for the time being. This is a significant adjustment.

Somehow as I was making some decisions regarding employment, I also came up with the brilliant idea to drive myself to Washington state where most of my family lives. So that's what I did. I'm writing this from a Starbuck's (for the wi-fi hot point) in Vancouver, WA.

The drive out was lovely. I've been through Montana many times as a child and once or twice as an adult, but this was the first time in ages. Parts seemed like scenes from another planet. (e.g. Just east of both Bozeman and Butte, for those of you who follow these things.) I tried some "dashboard photography" but that never works out, does it? It didn't this time.

Here are a couple shots from the western side of the Lolo Pass descent.

Another exciting time was when I accidentally hit a deer just as I was leaving Billings, MT. It was about 5 a.m. and was just getting up to cruising speed (80 mph in MT). About the time I offered up my customary prayer to the universe ("No deer, please"), there he was. I didn't have time do much other than brake gently and try to not lose control of my vehicle.

I never could tell what happened to the deer. I'm choosing to believe he barely broke stride. By the time I got pulled over the shoulder to inspect the damage, the site of the incident was too far behind me to see anything. Did I mention it was 5 a.m. and quite dark?

Here's the damage the deer did.

And here's what it looked like after I grabbed a roll of duck tape from the conveniently situated Walmart 5 miles down the road.

I spent some time in the Walla Walla, WA, area on Monday. I lived there about 4 years of my life (off and on) between the ages of 4-9. As a result, most of the scenery of my imagination is plucked from that terrain. Driving around the town quickly became a deluge of familiar scenes - scenes I see all the time in my imagination but never think about where they came from. Here they were.

Here's an example: Jethro Tull does a song called Aqualung. The opening lyric of that song is "Sitting on a park bench...". When I imagine ol' Aqualung sitting on that park bench, he's sitting on a bench in the Kiwanis Park in College Place, WA. I saw that park bench Monday.

Similar memories flooded me and I finally had to just leave. I could only take so much. It was surprisingly to me how emotional I felt.

I was also moved by how old and almost seedy the place felt. I saw the house my dad's aunt and uncle lived in. Back then (we're talking mid-1960s), this house was one of the nicer homes on the block. Now it's all sad and rundown.

And now I miss my wife dreadfully. I think it was a good thing for me to make this trip, but even so... I wish I was there with her now instead of here.

Weekly Check-in

Last night (Saturday) was the 2nd annual Scorpio Sirens birthday bash. Several people with whom I work are Scorpios and I think we each are rather proud of that - the Scorpio thing. Three of the most creative of these Scorpios (one of them happens to be my boss) are women and are all 3 celebrating landmark (divisible by 5) birthdays this year. Since I'm a Scorpio, I had to attend, don't ya know.

We pretty much took over one of the bars in town - the one that used to be a theater. For starters, there was a band, which we missed. I wanted to conserve energy so we didn't want to get there too early. We did make it in time for the fire-swallowing birthday candle lighting. You had to be there.

Then we danced. Lori says the last time either of us danced was at last year's holiday party. It's hard to believe, but I think she's right. The DJ last night was "straight from NYC", and I believe it. It was HOT - the music, the special Scorpio Powerpoint presentation playing on the back wall, the body odor. First time I've really enjoyed dancing in a long, long time. (For those keeping score at home, I'd say it was autumn of '03 at The Blue Nile in Minneapolis. The woman I was dancing with wasn't my wife, but she later became her.)

We were there for 2.5 hours and danced most of the last 1.5 hours. Walking home, I was doddering and Lori's feet were aching. Speaking for myself, it was worth it.

This morning I was tired, but after watching a couple movies*, I set out to do some chores I'd been wanting to get at. I started putting plastic on the windows upstairs. Not exactly strenuous labor, but before I was done with the first one I was feeling wobbly on my feet and needed a rest. I did 2 more windows before taking a lengthier break (more lying in bed) and never got around to the last window.

Later I started doing some laundry and by the time I had put the 2nd load in the dryer, I was feeling sick. Not nauseous, but weak and shaky.

I'm starting to be concerned that people are going to grow weary of my relative uselessness. My boss has been very gracious and cooperative - giving me lots of leeway with scheduling and general understanding. But I know it's frustrating for her sometimes. She had been accustomed to me being available and now a lot of the time I'm not. How long until she says "Enough"?

I really can't say I feel any better than I did at the end of the WMD treatments. In 3 weeks or so I'm going to start up with chemo at an increased dosage for the first week of each month. Rumor has it this increased dosage can bring on more side effects. Some people work straight through the chemo, some people are laid up for a week or so each month.

My intent is to keep getting up and trying to do the next right thing. Besides that, there's nothing to do but wait and see. And try not to worry.

*The films I saw today were The Maltese Falcon and Apocalypto.

The Maltese Falcon
I got this one from Netflix a year or so ago and fell asleep while watching. I was bummed I'd missed most of it but returned it without re-watching. I happily saw that it was just starting this morning so decided to try it again. Woohoo! Good call.

Was anybody "cool" before Humphrey Bogart? Maybe Ben Franklin, but I can't think of anyone else. Bogie was never cooler than in his Sam Spade character. And when Peter Lorre is on camera? Forget it. They should have a separate film track just to watch Lorre's face. (For another 5-star film that features Lorre, see M.)

Five stars... easy.

Apocalypto
Not a big fan of Mel Gibson, but he does have a way of portraying good and evil that kinda draws me in. Or maybe it's just the gore.

The story apparently takes place somewhere in what we now call Central America right before the Spanish set feet on those shores. Some natives who live in a "stone-built" place subdue other natives who live in the jungle. There's lots of drama with very realistic bloody parts. The actors are apparently speaking something like Mayan so it's all subtitled.

There's one spot where this dying, diseased little girl tells some of the bad guys how they're going to die. Very creepy and compelling.

High marks for the cinematography and effectively telling the story using actors who, mostly, had never acted.

3 out of 5 stars.

Still

I've been one poor correspondent lately. I'm sorry. It's the same old story. It's not that I have nothing to say; I seem to have inadequate stamina to get 'er done. But at some point, one must do it anyway.

Careful readers of this humble blog are aware that Friday I finished with the WMD. That was a very happy day. The radiation techs presented me with my mask and a lovely cake. Connie took a couple groovy photos.

This is from the master WMD control room - the safe room. :) That's me on the monitor.

Closer shot of the monitor

I've always had the option to choose my own music while undergoing radiation therapy. Until Friday, I hadn't taken advantage of this feature. For my final session, I chose this.
(It's track #6 on disc 1 here.)

So that was good. No more WMD in my foreseeable future. "Only" several more months of chemo, but that won't start until December.

In a previous post, I showed you some pictures of imagery representing what was being done to my brain. Here are a couple three shots of the machinery administering the treatment and what it looks like while it's doing it's thing.

This is the actual machine that administers the dose of radiation. What you see in the foreground is the table I lie on. That clear plastic square is where I put my head. Then the table gets shoved under that innocuous looking machine in the background.

As you'll see, the top section of that machine rotates. That circle on the ground between the table and the machine also rotates (which rotates the table I lie on). That's how they're able to so finely focus the WMD right where it's supposed to go.

Also of note is the lovely skylight in the ceiling. Just kidding - those are lovely projected images to give me something pleasant to look at. Unfortunately, my eyes are almost always closed. :(

After they shove my head under there, this is what I see when I look up. Shooting through plate glass made it a challenge, but if you can ignore me lying there taking the picture, you can see the lead leaves I mentioned in the previous post. That black hole, in essence, is the shape of the radiation coming through.

Here I am getting it from the left side. Note it's the machine that's rotating here, not the table. The pretty lights are coming from various places and are used to make sure everything is lined up where it's supposed to be.

Finally, it's coming from behind me. Note all those other people's masks on the shelves in the background.

(Major props to Connie for the photography on these last 2 shots.)

I've been trying to get some shots of these lovely people who actually do all the work with me. It's been challenging for some reason (mainly my laziness and being perpetually spaced out), but I promise to persevere.

For my birthday, my wife bestowed upon me a gift certificate for an 1 1/2 hour massage. That's going to be divine.

Last but not least, one of my nieces, Samantha, recently underwent a rather harrowing tonsillectomy followed by more hospitalization with a high fever. She has been home for awhile and feeling much better. My sister (Samantha's mama) sent us all photographic evidence that Sam is feeling much better. You already met Sydney in a previous post. Here's Sydney and Sam.

Lori and I both are still smoke-free. *high fives*

I'm still celebrating being done with WMD and off chemo for a month. I might still be next time you see me here.

Still Smoke-Free

Nothing much has changed since last time we "spoke" - except I haven't had a cigarette since that evening. All Hail Chantix. I don't know if it was just finally my time or if this miracle drug really is all that. It doesn't really matter. It's working.

A couple days ago we splurged on new bedding. Tomorrow (Monday) is Lori's quit date so tomorrow night we sleep on the new stuff... including new pillows! And the new sewing machine will be ready to start pumping out goodies that are untainted by the foul stench of the demon weed. (I'm really trying to not become one of those obnoxious ex-smokers. How am I doing so far?)

Five days left of WMD and morning handfuls of poison. The end is well in sight but it still can't end soon enough.

Beth, who handles dosimetry on Team Jeffrey, was kind enough to email me some screen shots that show how her teammates have been blasting my brain with radiation. (Just kidding, Beth. Y'all are the best! :)) Unfortunately, I'm not completely clear on what they all mean, so here's what I'm going to do. I'm going to go ahead and put the images up so you can see them. Hopefully tomorrow I'll be able to spend a minute with Beth and she can clear up the unclear parts. I will update this post later in the day.

UPDATE: OK, so here we are updating with more data on the imaging images.

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beam1
beam2
beam4 - You're looking straight down my spine as if you're looking down from the top of my head. Freak show.

These first 3 images are what Beth uses to map out which angles to zap from and how to focus those beams. In each of these 3 shots, you can see nice, smooth lines showing the inner (tumor bed) and outer (margins) areas of focus. The jagged line just outside those areas shows the actual lead "leaves" that are used to focus the beam. (When I'm lying there on the table every day, I hear them changing those leaves between zaps. I didn't know that's what that sound was until today.)

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dose1
dose2

These next 2 shots are kind of like models Beth uses to plan how to get the required dosages to the areas that need it and for keeping the WMD away from healthy tissue as much as possible. The purple is the tumor bed and the orange is the margins.

I need to see if my SAG card is up-to-date. I feel like I'm in sci-fi movie.

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dosedvh

This is a chart showing the actual dosage that will be delivered to each area. Each colored line represents a specific area. Unfortunately, you can't see all of the areas, but some are listed at the top (right eye ball, right eye lens).

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portfilm1

This shot shows a comparison of the plan (left) and what is actually getting zapped (right). You can also see the chunk of my skull they removed to get the tumor out. Yes, the surgeon "missed" the tumor when he pried open my skull. But judging by the rave reviews of the results of the surgery, I gotta believe he was well within the margin of error.

Yes, that is indeed me as the Michelin Man in the lower corners of some of the shots. Those are to show my body's position in relation to the WMD machine.

And here's a turn-of-the-century French postcard my wife just found in a book she has. Kind of blurry but you get the idea.

So there you have it. I never cease to marvel at how smart we humans can be. How do people figure all this stuff out? It's only been about 4000 years since we spent every waking moment thinking about where to find some food. Now look at us.

Tonight I'm celebrating relatively unimpeded breath.

Sloggin'

I'm still here. We are into the final 2 weeks of WMD, so the end is in sight, or at least almost. So far no additional symptoms, but the fatigue continues to deepen. After lying in bed most of the weekend, we drove to Viroqua to pick up a couple things and get some food. I wanted to do something to feel normal for an hour or so. It was good.

Today is my last day as a smoker. I'm using the latest miracle drug for smoking cessation called Chantix. Instead of trying to wean me off nicotine, it makes my brain stop "appreciating" nicotine. The plan is that I start taking the pills a week before my target quit date, which I did, and I already noticed a difference. I've been smoking substantially fewer cigarettes each day. (I used to smoke almost exactly a pack a day.)

The original plan was that we were going to have 9/22 (our wedding anniversary) as our quit date, but I decided I didn't want to try to quit smoking while undergoing WMD therapy. So we decided to make 11/15 our quit date. I just decided a week or so ago that I didn't want to wait. Now Lori started her pills today so she'll be quitting this time next week.

This is the first time I've tried quitting with a quit date while not dreading the quitting. I'm still a bit anxious, but for once I'm also eagerly anticipating being done with cigarettes.

It's been 2 weeks since I had any beverage that is sugary, caffeinated, or both. I honestly don't miss it a bit. Although the lemonade at Culvers last night was calling out to me faintly.

I've added a freshly-ground tbsp of flaxseed to my daily regimen (such as it is). I grind it in the coffee grinder and dump into a cup or so of yogurt. Tasty. Much better than Temodar.

The financial results are in for the benefit. It looks like I'll be able to cover all my health insurance deductible and have some left for next year's. First MRI in 2008 will put me over my deductible, so there's no mystery whether I'll be paying my full deductible next year.

Baseball - I bleed Dodger blue, but for a long time now, the Red Sox have been my favorite team in the AL. So this isn't easy for me but I have to say: Go ROCKIES!!

In a sport that plays almost every day, the Rockies have lost only one game since 9/15. (Seven of those victories helped put the final nails in the coffin for the Dodgers.) There have been longer winning streaks but not by much. And NOBODY has done anything like this at this point in the season. Even with the winning streak at the end of the season, they barely made it into the playoffs and that on the final day with help.

A few days ago my brother was predicting the Rockies are going to win the World Series. I told him there's no way they'll get past the Red Sox. But now after the Indians showed the Red Sox are not invincible, I'm not so sure. I still don't think the Rockies can beat the Red Sox, but if the Indians get past Boston all bets are off.

The perfect ending would be for the Rockies to continue their win streak until they're up 3-0 on the Red Sox in the World Series. Then the Red Sox could re-live the 2004 ALCS when they were down 0-3 and came back to beat the hated Yankees.

"Roberts is going! He's safe!!"

Benefit Day

This evening was the La Farge Cancer Benefit Extravaganza. I have to admit to a bit of trepidation as the evening approached. I don't have a lot of experience at being a "victim". But everything was very nice. Lots and lots and lots of people showed up. Lots and lots of nice things were donated for the silent auction and as far as I know, everything found a home.

The band rocked, although one could tell they toned it down a bit considering they were performing in the sanctuary of a church. The guitar player was pretty good and I wanted his guitar. It looked like a classic Gibson or maybe a knockoff. Lots and lots of silver - all the fretwork was silver. Beautiful.

There were lots and lots of people I didn't know but I met many of them. Of course there was a considerable contingent of folks from my workplace. That was very nice.

People are just so nice. It's really overwhelming. It's not a huge building but it's decent sized - it was practically overflowing. Before the sun went down there were dozens of people standing around outside. It was a standing room only crowd.

Let's celebrate small towns and the goodness in people.

It's Another Post!

I'm on a roll.

I recently acquired a new penpal. Cathy found this blog through a posting I made on a brain tumor forum. She had a diagnosis very similar to mine. You can read her story and check out her blog.

Words fail when trying to express how huge it is to talk with people who have been through this before. That was why Scott was such a huge find for me. So if there are any lurkers out there who've been through this brain tumor deal, please drop me an email and say "Hi". Of course any and all lurkers are more than welcome to pop in and say "Hi", too. (Hi Jen!)

OK, here's the photographic evidence I promised yesterday. It's probably not as gruesome as it seems to me, but it's kinda grim. I took one shot with hair on one side so you can see the contrast. I then (with a major assist from my wife) trimmed down to nothing what hair was left.

Pre-shave

Post-shave

The WMD destruction site

What shall we celebrate? How about Cathy and people popping in to say "Hi".

Still Alive

It's a new record. I haven't posted for 5 days. It's not like I have nothing to say - there's just no energy available to type it out. Wednesday I was all motivated to write a big long post about the evils of the pharmaceutical companies and how they have a profit motive to NOT cure things like cancer. (Did I mention I'm a little crazy lately?) When it was evening and time to write, it just it didn't seem all that important anymore. What was important was lying down.

The hair removal process is going swimmingly. I basically have a line down the center of my scalp that bisects the haired and the hairless. Someday soon I'll produce some photographic evidence.

Oh, here's some news. Lori ordered the sewing machine. Quite by accident she found out the deal was going to end on Thursday. If you check the ticker, you see we're still short of the price by about $300. We decided it was worth it to put the balance on a credit card in order to still get the box of goodies. So we're leaving the ticker up and any donations made will be used to retire that $300 on the credit card.

So a big thanks to everyone who contributed. The machine is on it's way!! Let's celebrate that!

Making Lemonade - or Omelets

So I'm distressed about losing my hair. (I know, I know - it'll grow back and I already had short hair. I know.) A co-worker has been wearing this hat that I've been admiring. OK, coveting. I was coveting it. I even told her not to leave it lying around if she wanted to keep it. So I had someone make me one just like it, and here it is:

Hair Loss Commences

At lunch today Lori noticed some loose hair on my head. She thought I'd shaved or something. On further examination it is quite apparent that I'm losing hair in at least a couple spots. It was noticeable enough to me that I was compelled to cover up with a bandana.

This was after spotting my name on a poster advertising a band that's playing in town next week. It's the band that's playing at the big cancer benefit. My name, Jeffrey Carl, on a cancer benefit poster - and not as a guitar hero. Yes, it's another "Poor Me" moment.

Cancer SUCKS!!!

OK, I'm better now.

Hey, did I tell you about the awesome benefit next week? A guy with whom we work happens to also be the pastor at one of the churches in town. It seems there's quite the little outbreak of cancer in the area and this lovely man decided to throw a benefit to help the families (ours and two others) defray some of the inevitable unexpected expenses trying to get healthy again can bring.

So there's going to be dinner, entertainment, and a silent auction. When I'm not feeling sorry for myself, I'm actually quite grateful. I've seen this town roll into action when people need help and it's a sight to behold. One of the joys of rural living.

Nineteen days of WMD to go.

Stranger Than Fiction

I watched a lovely film last night. Unfortunately, I can't tell you anything about it without risking tainting the experience should you choose to watch. I have plenty to say about it, but only after you've seen it. What a dilemma!

I laughed. I cried. It was much better than Cats. Seriously, it is a clever, thoughtful and thought-provoking, charming film. Will Ferrell is perfect. Dustin Hoffman was a delight. I don't know why Maggie Gyllenhaal hasn't become a huge star yet. Can't help but love her in this. Emma Thompson is her usual excellent self.

If you have to see a review, I suppose this one by Roger Ebert isn't too spoilerish.

I will say that there are some themes that are especially poignant with regard to things that have occupied my mind these last couple months.

I give it 4.5 stars out of 5.

Checking Off the Days

Twenty-one more to go.

I talked with the social worker this morning. She talked with my medical oncologist yesterday. She assured me that he assured her that anytime there is a change to my therapy or any decision that needs to be made, he will be consulting with MNFD. (See previous day's post for backstory.) So that's good. I can verify this by calling MNFD's office to confirm that he is being consulted.

Yesterday was the 10th birthday of my brother's oldest child, Kali. I was telling her that it seems like just a year or two ago that I flew across the country to meet her when she was just a couple weeks old. Now she's a young woman. Where does the time go?

We're celebrating Kali's birthday tonight because yesterday I didn't have the photos yet from the actual celebration. Henry recently had a birthday (he's 4 now), too, so we're celebrating that tonight along with Kali's. And we'll celebrate Greyson just because he's a swell fella.

The birthday girl

Kali and Henry

Swell Fella Greyson

Prevent Defense

Today I had some interesting new therapy - respiratory therapy. See, when one undergoes chemotherapy, often one's immune system gets compromised over time. When this happens, one becomes susceptible to nastiness such as Pneumocystis pneumonia - aka PCP. (PCP happens to be one of the leading causes of death among AIDS patients.) The risk is low, but if it hits, it is often fatal. Some doctors recommend playing it safe, some doctors think it's not worth it. (More on this in a bit.)

The plot thickens ever so slightly because the normal treatment to prevent PCP is a sulfa-based drug - I am allergic to sulfa. So instead of taking a pill, I get to have my medication (Pentamidine) nebulized into my lungs. I "suffer" from some mild asthma symptoms on occasion. I use an inhaler maybe every other week, i.e. I barely suffer at all. But it turns out that mild asthma can turn relatively nasty when someone is trying to force what feels like cough syrup into your lungs. (Get it? "Plot thickens"? "Cough syrup?") It was a rather unpleasant experience.

Now for the soap opera part. Two weeks ago - back when we were first planning the trip to Mayo - Dale, my radiation oncologist's PA, expressed surprise that I was not scheduled for any medication to prevent PCP. He specifically asked me to ask the folks at Mayo what their opinion was on this. So Monday when we visited the high priests of cancer at Mayo, I made it a point to ask if my new favorite doctor recommended taking steps to prevent PCP. Without hesitation he affirmed that he does recommend it. He feels strongly that, even though the risk is low, the harm done if it strikes is too great to not attempt to prevent it.

Yesterday I had my regularly-scheduled check-in with my radiation oncologist. Of course he wanted to know how the visit with my new favorite doctor went. (He didn't refer to him as my "new favorite doctor", nor did I.) I told him my new favorite doctor (henceforth to be known as "MNFD") thought we were doing a heckuva job down here in La Crosse. I told him MNFD is thrilled with the surgery results and thinks our aggressive approach is spot on. I also mentioned MNFD's strong belief that we should be trying to prevent PCP.

At this mention, my radiation oncologist leaped into action - verifying various data regarding drugs, etc. He told me he would set up the respiration therapy for the next day (today) and we were all set. Dr. Radiation Oncologist certainly appears to be on board with the preventative therapy.

This morning I show up for my daily dose of WMD, to be followed forthwith by the respiratory prevention therapy stuff. Who should sidle up next to me as I'm waiting for the WMD techs to call me back? Dr. Medical Oncologist Who Doesn't Handle Many Brain Tumor Cases And Was The Reason For The Trip To Mayo. He wants to have a word with me before we do the respiratory therapy.

"It's not standard Mayo treatment." "It's pretty rare that PCP happens." I explained to him that we were quite convinced by MNFD that this therapy was warranted and worthwhile. I suggested maybe he could call MNFD. He said he would his check MNFD's notes. After checking MNFD's notes, Dr. M.O. said, "He recommends it but I don't know where he's coming from."

Long story short, my medical oncologist was very resistant to me undergoing this preventative therapy. He was trying to talk me out of ignoring the advice of one of the high priests of Mayo (aka MNFD). I am also venturing a guess that he disagrees with other doctors on the staff at my La Crosse clinic. I can't prove it... yet... but I'm betting I'm right. In the end, I respectfully (I hope) informed him I would be doing the treatment.

This puts us in an uncomfortable position. I said early on that I'll go to Mayo, dammit, if I have to and I will. But to move my base of care to Rochester would be fairly traumatic. And overall I'm quite happy with the care I'm getting in La Crosse. But... if I constantly have to fight with the doctor who is supposedly in charge of my care here in La Crosse, it may come to drastic measures. We will be carefully monitoring this situation.

Tomorrow we will be celebrating a very special birthday that is actually happening today. Instead, tonight we will celebrate 11 days of radiation therapy - done. This means I am 1/3 of the way through the valley of the shadow of WMD. Touch the monkey.

Mayo Speaks

Today was the day we went to the Mayo Clinic in Rochester, MN. It's about a 2-hour and 15-minute drive from our home. Fortunately, the clinic at which I get my WMD therapy is directly on the way, so I was able to stop in for that.

The appointment with the brain tumor expert medical oncologist was scheduled for 1:30 pm. Initially Mayo had set up another appointment with me at 10:30 am. This was because they were planning on doing a bunch of diagnostic stuff (MRI, lab work, etc) before the actual doctor's appointment. When I told them I could get them recent results for everything for which they were looking, they said that would be fine. So, since they wouldn't need to be doing their own diagnostics, I asked if I still needed to be there at 10:30 am. They assured me I did.

This morning we make our way to the reception area and I let them know I'm there. The woman handed me the typical insurance release form to sign. I said, "Please tell me that I didn't come here 3 hours early just to sign this form." After looking through her stuff she said, "I'm afraid so." Not happy.

On further reflection, I realized that some of the results had been sent directly from my clinic to Mayo and some of the results I had hand-carried this morning. I suppose they did need some time to go over the stuff I hand-carried. The good news is that when I met with the doctor, he had definitely done his homework and was familiar with my case. So I got over it.

So we sat in the waiting room for a bit, sat in the car for a bit, then went and had a divine lunch at Victoria's. Lori had the spaghetti carbonara and I had pesto angel hair. Oh, so very yummy.

Then came the moment for which we've all been waiting - the meeting of the brain tumor expert medical oncologist. Lori and I both liked this guy right away. Far from humorless, but mostly a no-bullshit-just-the-facts type. First thing he did was briefly related to me what he knew about my case. Like I said, he'd done his homework.

After that, I explained why we had travelled there to see him. He emphatically agreed that when dealing with brain tumors one must seek care from brain tumor experts. I have to admit that I was a little anxious that we would be left feeling like we had wasted everybody's time with this 2nd opinion thing. He certainly didn't think so.

Then we talked about what treatment I am currently receiving. He said he pretty much agrees with the treatment plan I'm undergoing, though he's not certain he'd have included the chemo at this point. He said the chemo is usually recommended with radiation in cases with grade IV tumors. But he said using it with grade III tumors is certainly acceptable and not unreasonable. Later we were talking about our desire to take an aggressive stance with my treatment and he said that by all means we should then be doing the chemo with the radiation.

We talked a bit about other treatment options like high-dose chemo/stem cell replacement and positron therapy. He gave his views and why these treatments are not indicated for my case. These questions were really about curiosity, not that these were therapies we were considering.

Then we looked at the pre-op and post-op MRIs side by side. Wow. I'm going to insist from now on that any consultation involving comparison of MRIs features the side by side format. This way we could see how profoundly different the two are. It's impossible to describe it without showing you pictures. You really can't see how squished and disfigured things were in there before the surgery until you see how it's supposed to look, i.e. basically what it looks like now.

This was a theme to which the doctor kept coming back. On at least three separate occasions he talked enthusiastically about how phenomenally well my surgery went. Which leads us to the best part of the whole day.

We were close to wrapping up and we'd been talking about people with brain tumors who survive for years. The doctor said, "Nobody knows for sure, but these are the reasons I think you will be on the long tail of that curve: You have good health going into this, your excellent surgery results, and the way you're handling the treatment." From your lips to the ears of all gawdz everywhere, good doctor.

On the way home, I said to Lori, "He should have added a fourth reason. Because when we hear someone on the inner circle of the team say that they are not a brain tumor expert, we go find someone who IS a brain tumor expert to sit in that inner circle with us."

Let's celebrate Go Team Jeffrey! and by that I mean each one of you reading this. Let me hear you ROAR!

RAWWWWWWWWWWRRRRRRRRR!!!

Still Hangin' In

It's been days since I updated. It's not that I'm doing so awful; it's mainly that if I'm not in bed sleeping, I'm wishing I was. It seems the effects of the radiation are cumulative, which means that as the week progresses, the fatigue becomes significant. Thank the gawdz for the weekend. No radiation means I'm feeling quite a bit perkier.

Nothing much to report since we last met. Monday is the big trip to Rochester to meet with the brain tumor expert medical oncologist. I used to live in Rochester and, in fact, worked for Mayo as a temp for awhile. So it's not a big deal to be going to Mayo. Of course I never expected to be there as a patient seeking a second opinion on a brain tumor therapy program.

Here's a little something for anyone who has ingested LSD or is interested in that kind of thing. Journalist Sidney Katz died this past week. He spent 15 years of his career with Macleans, a Canadian weekly magazine. As a tribute, Macleans published Katz's famous "My 12 Hours as a Madman", his account of his 1953 acid trip - all in the name of science, of course. Brought back some memories. Especially since every time I took LSD, it was in the name of science... just like Katz.

Grinding

I've had enough of this radiation stuff. It is definitely not agreeing with my body and soul. I'm not experiencing any dramatic side effects other than some very mild blecchy tummy and some not insignificant fatigue. I hate to say it... but it feels like death. Not that I think I'm dying... not even close. But this process feels deadly. It's getting harder and harder to climb up on that table every morning. Twenty-eight more times to go. Thank the gawdz I have my cow.

I saw Dr. Ebersold, my neurosurgeon, this morning. He was pretty much just checking in. He was planning on reviewing my post-op MRI with me but they were having some technical issues. I told him I had seen the MRI with Dr. Minehan, my radiation oncologist, so he (Dr. Ebersold) decided we didn't need to review.

I mentioned to him what Dr. Minehan had said about the reduced swelling being a possible signal of reduced mitotic cells present. Dr. Ebersold's eyes lit up and he said "I'm so glad you mentioned that. Dr. Minehan is absolutely right." He went into more detail, but basically recapped what Dr. Minehan had said. My impression was that Dr. Ebersold agrees wholeheartedly that the apparent reduction in swelling is a very good sign from the standpoint of predicting how many mitotic cells are present. Reduced swelling = fewer mitotic cells. So more positive indicators.

I also had another Healing Touch session with Marti. It was much, much easier for me to focus on my breathing and stay in my body than it was last week. I did notice that when she had her hand on my forehead, it was noticeably harder for me to focus. When she moved her hand from my forehead to my chest, the difference was palpable - I could immediately re-focus effortlessly on my breath.

I reported this to Marti so she got out her pendulum and checked my chakras. Sure enough, everything was flowing just fine - except for the 3rd eye chakra. So now we know to check that before future sessions. Fascinating!

If you haven't checked out Lori's Spare a Dollar ticker recently, you can do that. We've had a handful of extremely generous donors. I am truly shattered at the depth of loving support from all of you. For the Spare a Dollar donations - of any size - thank you. For all the PTO time donations - of all sizes - thank you. For the rides to appointments and the willingness of those to drive who didn't get a chance (yet :)) - thank you. Thank you all for being there. We are truly blessed to have so many people pulling along.

This evening I'm celebrating not having to do this mess alone.

4 Down - 29 to Go

Met with my medical oncologist today for a "how's-it-going" check-in. "So far, so good." He just doesn't seem to be the slightest bit locked in to my case. Maybe he's mad because I asked for a second opinion. I guess that's how it goes.

Also met with the dietician. Not much to talk about there, except for some details about antioxidants. (Don't want to OD on antioxidant supplements while undergoing treatment. Normal dietary antioxidants are fine.) We mainly talked about what a great guy Michael Pollan is and how much we both think "Eat Food!" pretty much would solve all the world's problems. Good times.

Now for more photos. These first two are me taking my dose of WMD. I still get a little lump in my throat when I look at that second one. Kinda like throwing yourself on the mercy of the universe and hoping the result is a net positive.

Getting strapped in

Phasers on stun

That thing I'm holding in my hands in the pictures is the as yet unnamed cow my wife gave me when I was in the hospital for the surgery. Since Lori assures me that this cow is full up with healing love, I figured I would be better off with that than the ring the techs gave me so "they would know where my hands are". You can't see it in the photos, but my ankles are bound too. Sadists.

The next one is what I swallow every morning before heading to the big city. In the picture you see 4 chemo pills and 1 anti-nausea pill. What's not in the picture is the anti-seizure pill I also take at the same time.

Add the Keppra and it's $211 every morning - I know!!

I have made the executive decision to turn off comments on this blog. It is due mostly to my paranoia and my closely guarded privacy. And I'm a control freak.

If you would like to comment, please feel free to drop me an email. At the bottom of each post is a little envelope with an arrow on it. If you click on that, you can easily send me an email. I assure you, your emails are quite welcome.

Tonight we celebrate nicephews (non-gender specific term for nieces and nephews). This episode features Sydney, who enjoyed her first day of school last week. Since I couldn't pick one, I decided to put them all up. Forgive the indulgence of this proud uncle.

Sydney!!

More Sydney!!

Yet again... Sydney!!

Ladies and Gentleman... I give you... Sydney!!!!

Almost forgot... Here's a quote I shamelessly borrowed from a friend on her online journal. I had never heard this before and it's just too perfect.

Life is short and we have not too much time for gladdening the hearts of those who are traveling the dark way with us.
Oh, be swift to love!
Make haste to be kind.

Henri-Frederic Amiel, 1821-1881
Swiss Philosopher and Poet

Back to the WMD Grind

Only six more weeks to go! Woohoo.

It's been a lazy weekend. I've been trying to get some rest, but it's a challenge when the house is full of kids. I love having the kids here and I'm happy that they don't feel like they need to walk on eggshells or anything. It's just that our agendas didn't quite match up. Plenty of time to get caught up this week.

While I'm busy with treatment and 2 appointments tomorrow (Monday), Lori is going to be meeting with Marti the Cancer Guide and getting a Reiki session. This makes me very happy. I know this has all been relatively hellish on her. I'm hoping she can find a safe place to let off some steam.

On Friday I met with the social worker. Among other things, she gave me some paperwork to fill out to try to get some assistance with travel expenses. That will be helpful if it comes through. Filled it out today so I'll have it for her tomorrow. The two organizations are Angel On My Shoulder and Cancer Care.

TGIF

One of the great things about being back at work (sort of) is that weekends are once again meaningful. It's lovely to be back at work, but this weekend is welcome. It really has nothing to do with needing a break from work - more about needing a break from what has already become the grind of traveling every morning to get my brain irradiated. I was telling someone today that when I find myself a senior citizen, I'll already have this professional patient thing down pat.

But you know me - far be it from me to complain. The level of care I'm receiving at Franciscan Skemp has been superlative. Today I had my first Healing Touch session and I think it's going to be a very good thing. Today Marti spent time getting my energy balanced and I spent time practicing getting into my body and out of my head. Getting into my body is not something that comes naturally for me; I suck at it, in fact. But I can see that with practice I should improve dramatically.

In an early post, I mentioned my thinking on how the blood is so fundamental in determining one's overall health. Today on the table I had the revelation that one's breath is at least as fundamental as the blood. The breath and the blood - take care of those and everything else falls into place.

I'm noticing in myself an openness to the universe that I don't remember ever experiencing. It's subtle but very apparent to me. With my return to the ranks of driving-abled, I'm noticing that I'm slowing down. I've always been a fairly aggressive driver - never reckless, but always on task to get wherever I'm going. I'm noticing now that I'm just not in that big of a hurry anymore. Maybe it's a rearranging of priorities, but there's a peace now that didn't used to be there. It's nice.

I had a breakthrough today in a specific area in my quest to get on the forgiveness train. I was listening to a beloved Christina Aguilera CD - listening for the millionth time to one of my favorite songs on it. With perfect pitch, she was singing exactly what my heart wanted to say to this particular person in my life. Without getting too Twilight Zone , it was indeed quite a healing moment. I attribute this to the previously-mentioned openness to the universe.

Radiation/chemo therapy seems to be progressing well. I felt a little unwell this afternoon/evening, but I'm not sure if it was related to the therapy. I took a long nap this evening and have been feeling better, so it could just be generic fatigue from the ongoing surgery healing project.

OK, I know everyone is dying to know what I thought of Black Snake Moan. My expectations were not met. Note to self: The perfect film poster does not a fine film make. It had so much potential, and I think with a different director and lead actress it might have been a winner. I've always been intrigued with Christina Ricci, but I'm beginning to think I was only in it because of her enormous head. (You know I have a soft spot for people with big heads.) On the other hand, Samuel L. Jackson's turn as an aging juke joint bluesman was superb (when is he NOT superb?). I don't know if he was actually playing the guitar, but whatever he was doing worked for me. The scenes where he makes his grand return to the stage were worth suffering through the rest of the movie. For those keeping score, I gave it 2.5 stars out of 5. If it wasn't for SLJ and his hot licks, it would have struggled to make it above one star.

Today my brother and his family said good-bye to their four-legged family friend. Turner was a huge black lab who had been struggling along in his 14th year. With Kevin and his wife's help, Turner was able to say "bon voyage" on a good day and with dignity. Turner was the baby of the family before there were any babies, so the kids have all grown up with him around.

No matter how much we celebrate Turner's life, we're still left with profound sadness. Tonight we soldier on and celebrate Turner.

Night Off

Nothing substantial to report so I'm going to watch a movie this evening.

Day 2 of treatment went off without a hitch. Didn't even take 10 minutes and I'm feeling relatively great. Still tired, but I don't think that has much to do with the treatment... still just slowly mending from the surgery. Driving myself was fine and dandy.

Let's celebrate taking a break.

The One Where Jeffrey Drives Again

Yes, it's a happy day. My neurologist rather enthusiastically said "I think you're fine to drive - as long as you keep taking the anti-seizure meds." Works for me, bra. So that was the big news today - unless you count that part about taking my first dose of poison and letting the WMD start it's work of... well... mass destruction.

Lori and I put in a couple hours of work before heading off to La Crosse this morning. Even though it's been in bits and pieces so far, it has been fabulous to be back at work. Starting tomorrow my boss will have returned from her vacation so things should be returning to as normal as they're going to get for awhile.

First stop in La Crosse was at the pharmacy to fill my prescription for the poison and anti-nausea meds. It was uneventful really, even though it was by far the largest prescription I've ever filled. Twelve bottles of poison and one of anti-nausea meds. We picked up a pill organizer at Walgreens and proceeded to fill up for the rest of the week. Not a happy task.

As directed, I took my first dose one hour before the radiation treatment. Then we went to records and tried to track down a bunch of stuff for which I've been waiting for weeks. I still haven't received any of the imaging from my surgery/hospital stay. I've been assured it's all on it's way. Good enough.

Then we had a comfy seat until Connie (different Connie - not Connie the Angel, but an angel nonetheless) came and explained what they were going to be doing to me. For this first session they had to take some X-rays to make sure they were positioning everything correctly. Then of course there was the main event - the much anticipated WMD itself. Turns out the actually radiation part only takes a total of about two minutes.

They were right - the anxiety abated considerably after we got this first one under the belt. During the treatment itself and leading up to it - including taking the first chemo dose an hour before - was some pretty intense anxiety. It's pretty hard to get one's head around the whole thing when you're smack in the middle of it. I had a moment or two on the table when I could have easily wept a bit. Pretty freakin' sad, when you think about it all. But... that all passed and here we are. Feeling pretty much as hale and hearty as ever. That could change in a week or two but we'll worry about that when we get to it.

I was happy to get to introduce Lori to some of my new pals from Monday. She agrees that the cancer center seems to be staffed with some pretty special people. Unfortunately, I didn't get to introduce her to Marti, my cancer guide, but I'm sure we'll get to do that at some point soon.

As we were getting ready to head off to the next appointment (always with The Next Appointment), I asked Christine (she of Cancer Care Command Central) if anyone could tell me what exactly they are doing to me with this radiation therapy. She summoned Beth who came bearing X-ray film and charts. Beth gave me all the details while the waiting room watched. Lori said later that they were all in awe of the grilling I gave Beth. Lori and I agreed that Beth and the rest of the staff there PREFER getting grilled on this stuff. They LIKE having patients fully engaged in their own treatment.

So... for those inclined... here are the chemo and radiation details:

Chemotherapy - Temozolomide (brand name Temodar) - 130mg daily

Radiation - Tumor area = 59.4 Gray; Edema area = 45 Gray. These dosages are spread out over the 33 daily sessions over the next 6 weeks or so. The edema area is the area of swelling around where the tumor was. The entire area is a pretty good sized chunk of the left hemisphere of my brain. Here is a pretty meaty little explanation of how radiation therapy works.

So far, I don't feel any different at all. Neither the chemo nor the radiation have had any noticeable effect on me. Again, we expect this will probably change over the next couple weeks. Won't it be fun discovering how? I can't wait.

On to The Next Appointment. Time to meet with my neurologist, aka my Keymaster. Since I already told you the big news, there's not really much to report here. He thinks I'm looking great and seem to be doing very well. He seemed surprised I had started therapy already... so soon after surgery. He said the EEG from Monday looked spectacular. He said he's aware I'd like to get off the Keppra (anti-seizure meds) but if I want to drive, I gotta stay on it. Easy decision.

He also did some cursory neuro testing - checking my gait, peripheral vision, my ability to alternately touch his finger and my nose. I guess I passed. I did so well that I was able to skip my appointment on the 18th and won't be seeing him again until 12/7. Happy days.

On the way home we stopped at Walmart to pick up a couple necessities. I've been complaining that the binder I bought for this adventure has some significant deficits, the main one being that stuff (like appointment cards) falls out unless I carry it right-side-up. So as a driving celebration gift, my wife bought me a nifty attache bag thingy. I love it. And I, of course, now love her even more.

Also on the way home, I got a call from one of the nurses at our local clinic. I'd been trying to track down my primary care physician to get a prescription for some smoking cessation miracle cure. So I wound up with Yet Another Appointment this afternoon with Dr. Lisa. It was a short appointment. Lori and I both got scrips for the miracle cure, talked about moving our quit date from 9/22 to 11/15 (Great American Smoke Out), and got a quick opinion on a toe owie that's been bothering Lori (she's going to be just fine).

And there you have it - yet another lengthy post. One of these days soon I'm going to have another 2 or 3 line post. I think I'm due.

Lori agreed with me that it's time to celebrate me. What I want to specifically celebrate is how tenacious I've been with this unpleasantness. After reading through previous posts, especially early on, I can safely say that it has not been all talk. I said early on that I was going to be attacking this nonsense head-on and all the evidence I can lay my hands on shows that I have been doing exactly that.

OK, I'm not completely comfortable celebrating me. Tonight let us celebrate Go Team Jeffrey! and all it's various forms. Let's give all of ourselves a big hand. Onward and upward.

Poor Prognosis - Terminal

That's what my wife saw this morning when she looked at what my oncologist wrote on the FMLA paperwork. The part where he says what's wrong with me, he wrote, "Brain tumor, poor prognosis". Under "Probable Duration of Condition" he wrote "Terminal". Well if that's not a fine how do you do??

For some reason I intuitively knew that this was bureaucratic bullshit. It did give me pause, to be sure. Those are some pretty loaded words to have staring you in the face. I called my Cancer Guide, Marti, and she confirmed that this is SOP doctors use to make sure you're as protected as you can possibly be under the Family and Medical Leave Act of 1993 (thank you, Bill Clinton!). I've since had it confirmed by others in the medical field.

Lori and I have both decided - at least for now - we don't give a rip what anyone says my prognosis is. So much of any prognosis is about statistics and statistics just don't apply to individual cases. Trying to predict the future in my case, based on statistics, is next to useless. So we don't care.

And it turns out, according to Marti, my Cancer Care team has the same philosophy. They are VERY reluctant to discuss prognoses with patients. They don't think it's helpful to focus on that. Unless some government bureaucracy needs to hear things in the worst possible language. Then they are more than happy to use that kind of language.

So... no cause for alarm. So I got a little dramatic with the post title. Sue me.

Getting all set for tomorrow. Trying not to be anxious about it but it ain't easy not being a tad bit nervous. My experts assure me that the anxiety will be reduced dramatically after the first treatment. I hope they're right.

For all you pray-ers, positive thinkers, and good mojo practitioners - tomorrow (Wednesday) at 12:45p would be a good time to crank out some of that good stuff for me and Lori.

Yesterday I mentioned that I was unable to fill my chemo prescription. So I'll be filling that tomorrow which means I'll be around for an hour before the radiation therapy so I have time to take the chemo one hour prior. What this means is that Lori is going to be getting a Healing Touch therapy session while we wait. If there's time, I'll get one too. Marti says after having to have that "prognosis poor" crap staring her in the face, Lori's got a session coming.

Some good news I forgot to mention yesterday. Usually patients undergoing radiation therapy have to take steroids to reduce brain swelling. Because of how good my post-op MRI looks, I get to try it without steroids. We'll keep a close eye out for ANY signs of swelling, but until that happens I get to be steroid-free. This makes me very happy.

Tomorrow we find out if I get to drive. I have driving angels up lined up for Thursday and Friday if necessary, but I'm really really REALLY hoping they won't have to drive.

Remember I talked about Bob and Pat White a couple days ago? I got an email from their daughter yesterday. She sent me a picture she took back in 1966. She must have been 13 or 14 at the time. MAN, my brother and I had huge heads! When I showed Kevin the photo, he said "How did we walk upright??". I'm still laughing about that one.

I got a voice mail today from my dear Uncle Mike. He is my dad's younger brother. Nobody has ever had a cooler uncle. When I was 9 or 10 I had a silly autograph book that I think a couple of people actually wrote in. He wrote "You have the potential to be an All-Star if you work at it." He and my dad were very close - kinda like my brother and me - so he was always around. I love him dearly.

I talked to him later, but his initial voice message was priceless. He was getting all CEO on me. "We gotta make sure you're working with the A-team here. We can't have a bunch of these guys hanging out on the golf course pulling protocols out of their asses because that's what they did last time." I paraphrase, but it was hilarious and oh so heartwarming.

If you look at the links on the right at the top of this page, you'll see a new link to Lori's "Spare a Dollar" web site. Now you can see the ticker that tracks how many dollars have been accumulated. To those of you have contributed dollars, "Thank you" a thousands times from the bottoms of our hearts.

I am NOT going to be posting any more sagas like yesterday. So we will close this evening by celebrating my dear Uncle Mike. Go Buckaroos!!

WMD, Here We Go

Today was my first day back at work. OK, so I was only there for an hour this morning but still... it was good to be back. I knew I wasn't going to be there much but did expect to be back from the big city by 3 or so... we didn't arrive back in La Farge until 4:30. Not much workday left by then.

But oh, what an exciting day it was in the big city! Let's start with the EEG. Not a lot of excitement but it was interesting. It took the tech almost 45 minutes to get me all wired up. Right about the time she was ready to start the EEG, I decided I was going to need to go potty before we started. Without missing a beat, she unhooked a panel from the machine she was working on and slung it over my shoulder with the handy shoulder strap that somebody thought to put on there. Wow. So I peed with a big bundle of wires stuck to my head. On the way out of the bathroom I handed the tech my cell phone and had her take a shot for posterity. If I can figure out how to get the picture off my cell phone, I'll post it here.

The EEG was otherwise uneventful. The tech was happy my head was shaved - made her job a lot easier. I had to endure a bright blinky light for awhile. I even managed to doze off for a couple minutes, which I learned was a good thing. They were happy to have caught me for a couple minutes of sleep EEG. The whole thing including set up, testing, and clean up took nearly 2 hours. And that was the EEG.

Next I met with my Cancer Guide, Marti. She is kind of like my personal assistant/liaison with the Cancer Center. She told me all about various services that are available - things like Body/Mind classes, Healing Touch therapy, a staff dietician, a staff chaplain, a staff social worker, etc etc. She's yet another angel in my new cancer world. I'll be mentioning her again later.

Next it was time to make my WMD targeting mask. They laid me on a table, stretched something like a very porous wet dishcloth over my face, then stretched it across my face and down around the sides of my head. They blow-dried it for a minute, then let it continue drying while they took some CT scans of my skull. When they got done, it looked like a Jason mask, only more porous and covering most of my head. It was cool. I get to keep it when we're done with the WMD.

This mask, along with some wicked cool 3D modeling, is going to be used to precisely determine where they will be directing the beams of radiation. It will, to a ridiculously precise degree, allow them to focus the WMD on the death cells and spare the healthy tissue.

I need to take a time out here to talk about something I've been thinking about for a while now. That is the insane amounts of time, resources, and energy that are being spent on my behalf. Yes, I deserve it just as much as the next person, but sweet geezuss, they are spending a lot on little ol' me. It's staggering. For all you people out there who are paying your ridiculously high health insurance premiums that you hopefully will never have to cash in on? I thank you. I wouldn't have all this available to me if it wasn't for those premiums. Thank you again.

After the mask was done, we talked about the schedule for starting the radiation therapy. Charlie, the radiation tech, informed me we are scheduled to start Wednesday - THIS Wednesday. Gulp. I'm not sure what I was expecting, but I was not expecting to start so soon. For one thing, I was expecting to have a 2nd opinion consultation with a BT expert at Mayo. Unless that happened tomorrow (Tuesday), that wasn't going to happen.

When I pointed this out to my radiation oncologist (who IS a BT expert), he got his physician's assistant on the case. I sat around for a good 45 minutes (I was happy to wait) while he got the best deal, meaning the soonest appointment with a Mayo chemo BT expert. Turns out the best he could do was 9/24 - 2 weeks away. Decision time.

So here were my choices: 1) Start the radiation treatment as proposed, with chemo. Meet with the chemo BT expert at Mayo on the 9/24. 2) Start the radiation treatment as scheduled but doing it without the chemo until the Mayo BT expert signs off on it. 3) Postponing all treatment until Mayo BT expert signs off on the whole treatment plan.

Option 1 means that we start as scheduled but without approval of chemo BT expert on the chemo portion of treatment plan. Upside is obvious - immediately start treatment. We are assuming we are dealing with a relatively aggressive cancer here. We got most of the tumor during surgery so we have this window of opportunity where there is relatively little left to mop up. We just might nail this sucker right now. But I'm still nervous that a chemo BT expert has not weighed in on the treatment plan.

Option 2 means we start immediately but without the chemo until the chemo BT expert weighs in. That means that for 2 weeks I'd be getting the radiation but without the benefit of the chemo. This is crucial because the whole point of the chemo in this treatment plan is to prep the cancer cells to die more readily by WMD. Not liking that option at all.

Option 3 means we hold off on everything until chemo BT expert at Mayo gives us the high sign. Considering the "open window" theory, this option loses us 2 valuable weeks to start killing the cancer. With the aggressive strain with which we are likely dealing, every day counts. Two weeks seems like an eternity to wait.

In case you haven't guessed, it didn't take me long to choose Option 1. Here's why it wasn't all that hard. I had been thinking that it is likely that the treatment plan developed for me was designed by my BT expert radiation oncologist. This is his plan. The role of the non-BT expert seems to be that of someone signing off on someone else's plan. The chemo part of this treatment plan is standard operating procedure for this radiation treatment plan. I discussed my thinking with the physician's assistant and he concurred. Therefore, I am choosing to not place much weight on the fact that a chemo BT expert has not weighed in on my treatment plan. We do not have time to wait.

It was not an easy decision to make. Once I decided that I needed to have a chemo BT expert on the team and involved in my treatment plan, it kinda seemed like I was caving if I didn't insist on his input before starting treatment. But I'm trying to be less dogmatic. Once the options were on the table and it was clear that time is of the essence, any option other than starting treatment immediately and with the full treatment (including chemo) just didn't seem worthy of serious consideration.

So... we start WMD and chemo this Wednesday. The treatment I start Wednesday is designed by a radiation oncologist who is a brain tumor expert. I have an appointment to meet with the chemo BT expert at Mayo in Rochester on 9/24 (2 weeks from today) and will be adding him to my team at that time. I suspect we will have the blessing of the chemo BT expert at Mayo when he learns we've been killing cancer cells while we waited to meet him.

Once we decided to move forward, the physician's assistant got on getting my prescription for the chemo. (The PA's name is Dale. Let's call him Dale from now on. I'm guessing me and Dale are gone pretty tight by the time this is all over.) That wound up being another 1/2 hour wait in a consulting room.

Remember Marti? For the last 15 minutes of that wait, she sat there with me just keeping me company pretty much. She did give me some more info while we chatted, but she was basically just holdin' my hand. I don't think I realized yet what a stressful day it had been. She already knew. Angel.

I think Dale is going to soon wind up with Angel status. He's got that look.

Then it was time to try to get the prescription filled for the chemo and anti-nausea meds. While I was waiting for Theodoric the Barber to get my pills, I stopped up by my neurologist's office to see if he had seen my EEG yet. I talked to his main nurse and she let me know he wasn't in the office today. So I won't know about my driving privileges until at least tomorrow and probably Wednesday. Lori is coming with me for the first radiation treatment, so Wednesday won't be a problem. But after that I am desperately hoping to drive myself. We shall see.

OK, back to the pharmacy to find out they don't have my chemo! They'll have it tomorrow so I'll show up an hour early on Wednesday so I can take the chemo one hour before the radiation therapy as prescribed. On normal days I'll take the chemo when I leave from La Farge for the big city - it's one hour away. Soon it will be routine.

Major blessings on my driver today. Not only did she agree to spend half the day in La Crosse, she also was very gracious when my day wound up taking an hour and a half longer than expected. Let us celebrate Michele.

I thought today was going to be a relatively stress-free day full of medical marvels. It turned out to be a day I had to make the biggest decision yet in this adventure. Just a wee bit of stress there. I was caught off guard with how quickly my experts wanted to get this going. But I am happy that we're going full steam ahead. Lori, by the way is all systems go with my decision. So that's good.

This has been a long post. I am going to end it. Tomorrow we'll see if we can celebrate a full day at work.

Got a Dollar?

I'm still not quite sure how I feel about this, but I'm going to post this anyway.

Since all this stuff with cancer popped it's ugly head up in our universe, Lori has been working on getting herself hooked up again to start up her crafty/quilty business she used to have going. She's been working busily at getting several prototypes for products developed, labels for the new business name, etc.

This thinking and pragmatic wife of mine is realizing the unknown nature of what might happen with our financial future. Right now everything is relatively OK, but there are many outcomes that can change that drastically and suddenly. So she's been studying on developing a solid, reliable source of income to supplement the two sources of income we currently rely on.

Yesterday the one sewing machine upon which she has been relying, died. Truthfully, it hasn't been all that reliable all along. Bottom line is that we have decided to go for broke and buy the machine that she's long known she needs to make this business work.

I'll let her tell you the rest. She posted this while I was napping today. I know it was not easy for her to do this. She's always been a pull-yourself-up-by-the-bootstraps kind of girl.

Feel free to spread that link around. It's only a dollar so the more the merrier.

Today I am celebrating my beloved wife and her indomitable spirit.

Jeffrey has Two Mommies - At Least

In a previous post, I alluded to my having a complex (yet fascinating!) family history. Because of a phone call I received yesterday and my desire to report on that phone call, I'm going to be required to share some of that complex and fascinating family history.

I was given life in a happy, loving home. Sadly, that particular version of a happy, loving home was destined to not last very long. Due to some medical issues, etc., I was separated from my mother for what was supposed to be a short period of time but wound up to be, for all intents and purposes, permanent. My father moved with my brother and me about a thousand miles away from where my mother was and I didn't see her or talk to her again until I was fifteen. (This is where you may be excused to reach for a tissue. I still occasionally do when I think about it.)

(This is not part of today's story, but you need to know that I have a lovely relationship with mother. She has been a major influence in my life and still is today. She is a huge source of strength for me during this recent unpleasantness.)

Meanwhile, my father soldiered on - trying to find a way to make a life for him and his two little boys. I must have been 4 and Kevin would have been 2, maybe 3. My dad found some work but was stymied by what to do with his boys. He sent out a plea asking if there was a family that could take his boys during the week while he worked. A lovely, loving couple with 5 kids (or so - can't remember for sure) of their own and a farm answered the call.

I don't know how long we spent with Bob and Pat White. Probably 6 months or so all told. What I do know, is that the time we were with them are some of the first memories I have in life. In retrospect, this had to have been a significantly traumatic time in the lives of my brother and me. Uprooted geographically. Where's mama? How come daddy's never around? Yet Bob and Pat were like these two huge pillars of solidity and support. They were as close to having two present parents as those two little boys could have hoped for.

So... my phone rings yesterday. There's some gruff sounding male voice on the other end saying "I'll bet you have no idea who this is calling you." I told him he was right but let me guess. He gave me a clue. "In about 1965, you lived with me." Well, there was only one person that could be. It was Bob White. He's going to be 80 this year and Pat, who's 81, was right there with him. I hadn't talked to either of them for at least 20 years, and then maybe twice since those very early years.

I talked to them both for an half hour or so, catching up with family stuff... reminiscing. Keep in mind these are basically the earliest events in my life about which I'm capable of reminiscing. Before my dad met my 2nd official mommy (still his current and beloved wife), there were several surrogate mommy situations, but none had quite the impact that Bob and Pat White did.

Today's celebration is easy - we celebrate Bob and Pat White. Surely they are angels in disguise.

"Go up, thou bald head"

The day has come. My head is not only shorn, but shaven as well. Nothing much to say but to see for yourself.

1 - 2 - 3 - 4

We are running a contest with a fabulous prize that is currently under development. The first person who identifies the source of this post's topic, will win the prize.

Unfortunately, at least one of my family members most definitely knows the answer, so I am forced to make family members ineligible for the prize. You may all blame Kevin. I promise to make it all up to you.

Rockin' the Literature

Things are shaping up smashingly for Mondays marathon of modern medicine. Once I found out about my additional appointment for the afternoon, I was compelled to let my ride know that she should probably plan on just dropping me off - I can't expect someone to spend most of the day waiting for me. It turns out that my ride angel welcomed a chance to spend some time in The Relatively Big City to run some errands and do some shopping. So I've got a ride to and from. I am surrounded by angels.

Also an addendum to the Monday schedule - I'm going to try to squeeze in a visit with my Cancer Guide. This is a person on staff who kinda holds your hand through the whole experience. One of the things she does is helps keep us aware of some of the auxiliary services that are available - things like massage, Healing Touch therapy, and Reiki, to mention a few. That seems like a very good thing. It's going to be a very busy day but I expect to get much accomplished.

Still waiting to find out the date of my visit to the BT expert at Mayo in Rochester. Should know for sure Monday.

My first day back at work was supposed to be Monday and I intend to still make it my first day back. I just won't be there for most of the day. I'll start a little earlier than normal and will finish out the day when we get back from the big city. I am very much looking forward to getting back to work. Let's celebrate that.

I'm still reading the Cancer Report and still loving it. Since we last spoke, I have also acquired additional precious reading material. Remember my hero Scott? It turns out that his wife Shelly (who is also my hero in her own right) has written a book about her experience with Scott's brain tumor and everything that brought into their lives. I have been honored with a copy of the manuscript.

Shelly's writing is fabulous and I'm devouring the book as quickly as I can. There is no way to describe the feeling of reading along and almost constantly identifying with their experience. There were some differences in Scott's early experience compared with mine, but the similarities far outweigh those differences. Especially poignant are those times when Shelly's account rings so true with the emotional stuff. The confusion... the fear... the what-the-hell-is-going-on-here? I know precisely what she's talking about.

Shelly wrote the book from the perspective of a caregiver, so she sent the manuscript to Lori, who is also chewing off huge chunks with a ravenous appetite.

Here's a sneak pre-publication preview - a joke Scott made up:

You just need to take it one day at a time. By the way, what day is it?

Maybe you have to be there, but I love it.

Today we celebrate Shelly and the pending publication of her book.

More is Revealed

OK, so that wasn't so bad. I was so physically, mentally and emotionally drained after the day at with the Onks that I took what amounted to a 3-hour nap this evening. I'm feeling much better now. I am glad this day is behind us.

Here is the proposed treatment: 33 treatment days of radiation therapy accompanied by chemotherapy with the possibility that the chemotherapy will continue for a short period after completion of radiation therapy. I'll be visiting the Cancer Care Center every weekday (M-F) for almost 7 weeks for about 15 minutes of zappage. We won't know what day we start until I've visited the Mayo Clinic for a second opinion on the proposed treatment. I think it's safe to say that, assuming the 2nd opinion coincides with the initial treatment proposal, I'll be starting sometime mid- to late September.

The chemotherapy agent is Temozolomide, brand name Temodar. It is a very common chemo agent. The pill form is quite new, but the drug itself has been around awhile. In my case, we are using it to complement the radiation therapy. It is well-documented that the radiation therapy being done to me is more effective when accompanied by this chemotherapy agent. Since it's in pill form, I don't have to strap in with the IV, which is a big plus. Now if they could just do the WMD in pill form. Guess we can't have everything.

I spent almost 1 1/2 hours with Onk #1, the radiation oncologist. He meets my standard for brain tumor expert. He said he has had about 20 brain tumor cases so far this year, which should easily put him in the neighborhood of 25 cases this year. He said he has handled over 500 BT cases in his career, and this is primary BT cases, which don't include BT cases where the cancer started somewhere besides the brain. He's got the bona fides.

Onk #1 has an excellent bedside manner... very patient and thoughtful while he's working. We spent a good deal of time looking at imaging (MRIs, CT scans) - comparing before and after, etc. The MRI from this past Tuesday looked pretty good. The tumor is basically gone. There is less swelling after the surgery. This is important because the area affected by swelling is where we're looking for rogue cancer cells to zap. We're still going to be zapping anywhere that had swelling before the surgery, but it's a good sign that the swelling has decreased. Onk #1 joined the chorus of medical professionals on Go Team Jeffrey! who have opined that I am an awesome healer. He thought the surgery looks fabulous.

We met with Onk #2 for about 45 minutes or so. His responsibility is for the chemo component of my treatment. He seems quite competent and is the head of the Oncology department at the hospital. By his own admission, he is not a BT expert - he handles a handful of these cases every year. We talked about the availability of access to BT experts at Mayo, and he graciously offered to make an appointment to consult with one. I immediately took him up on it. I'll be calling tomorrow to try to get that firmed up. We need the appointment to be ASAP to avoid any delay in starting the treatment. Hopefully sometime next week we'll be meeting with a BT expert oncologist in Rochester.

Overall Lori and I are pretty happy with the plan and how things are looking. I think she's slightly happier than I am, but that may be only because I get to be the one actually strapped in for the treatment. But I'm basically pretty happy about it.

Most people doing this radiation treatment in the dosage I'm doing do not have major side effects. Fatigue is common but usually manageable. There will likely be some nausea but most people are able to manage it with anti-nausea drugs. I'll probably lose some hair and it may or may not grow back to normal. There are some additional possible side effects to the chemo, but again, they are manageable for most people. There is a very good chance that I will be able to drive myself to the treatment appointments AND be able to work a normal work schedule throughout the treatment cycle. This is all very good news. Of course not everyone manages all the side effects optimally and I could very well be pretty sick a lot of the time during the treatment. We just won't know until we get into it. But both Onks made a pretty convincing argument that the outlook for side effect management in my case is very good. This bodes well.

So here's what the near future looks like:

Monday morning - EEG to see if we can get off the anti-seizure meds and return to driving. Probably won't know about the driving until appt on 9/18 but should know about getting off anti-seizure meds by end of next week.

Monday afternoon - Radiation simulation to create model for designing precision targetting for WMD. This should be interesting because they're using sci-fi tools to do this.

Sometime very soon, maybe later next week - visit to Mayo in Rochester for consultation with BT expert oncologist to get him/her on Go Team Jeffrey! and get 2nd opinion on treatment plan.

9/18 - surgery follow-ups with neurosurgeon and neurologist. Big day because I find out if I can get back to driving.

Date TBD, probably late-ish September - begin radiation therapy.

Once we're done with the radiation and chemo, we wait. We take MRIs and CT scans every so often and see if anything new develops. If nothing develops for 5 years, I'm cured. It's not often that happens, but it's well within the realm of possibility. If something new develops, we see what it is and decide how to get rid of it.

So much for the Onks. I've had enough of those cats for one day.

I started reading the Cancer Report book I mentioned yesterday. This is so exactly what I need to be reading. The first thing they start talking about is forgiveness... how crucial it is to not harbor resentment. I have long believed that this is one of the root causes of dis-ease in general. It's an ideal for which I've aimed for many years. I am stoked to read the book cover to cover.

I guess that's it for today. Another memorable day on this lovely adventure. More has been revealed - let us celebrate the revelations.