Zwartboek - "Black Book" (2006) - Review

This is one of those long films that fly by in no time. Even watching significantly better-than-average films, there are times when I find myself thinking "Nice flick but is it ever going to end?" Not so with this one.

The story is about a Jewish woman who hooks up with the Dutch resistance during the final months of World War II. For much of the movie, she dons the guise of a non-Jewish Dutch singer in order to seduce one of the Nazis (a much more charming and sexier version of your typical Nazi). One can only imagine the surfeit of possibilities for spying. (Yes, Mata Hari does come to mind.)

Lots of intrigue with double-crosses and at least one double-double-cross (triple cross?) follow. There is romance, believe it or not. There are a few scenes that probably would have got this film an NC-17 rating twenty years ago. Not all of those scenes have to do with sex or nudity.

Though the story is pretty dang good, I'm not sure I'd have liked the film as much as I did without the performance of Carice van Houten. Quite frankly, the story was a tiny bit overwrought. (It was based on "actual events". I suppose WWII was an actual event.) But this girl's acting chops made this film something I recommend without reserve. I would watch it again if only to see her gut-wrenching sobs. I believed that she felt her pain might kill her.

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Here is a review from somebody who didn't like it quite as much as I did.

Forgot to mention... subtitles. What I consider a bonus is that they are in multiple languages - mostly Dutch but lots of German and even some Hebrew.

(out of 5)

Oh, My God

I've recently been in contact with several people with whom I grew up and went to school. The topic of religion and belief in God has come up in several conversations.

I was raised in a religious household. My parents are both Seventh-day Adventist and my siblings and I were raised to be SdA. I went to private church school until midway through my sophomore year in high school. (We called it "academy". I think "high school" was a little too worldly.)

The Adventism that was practiced in my household was a religion based on rules, judgment, and fear. The message I got was "God is love, but there is a long list of things that he doesn't like. If that's not clear in the Bible, you've got EGW to expound and maybe add to the list. Neglect to follow the rules, even if it's accidental (Remember Uzzah?), there is significant discipline meted out, even unto death."

So that was how I was introduced to the concept of God.

In my teens and until I was about 30, I was quite the sinner. Based on the concept of God that was handed to me, I was in serious trouble.

When I was in my mid-20s, I spent about 3 years in the SdA church. I was already pretty miserable by then and thought that maybe the church I grew up in might have the answers. I pursued that hope with vigor and rigor. I studied. I witnessed, even to the point of preaching to the faithful. After that 3 years, I became completely disillusioned with the whole thing. I knew I had given it my all and it was not working.

After that, I got down to practicing one of my most egregious sins - being a drunkard. (Not to mention all the substances that aren't mentioned in the Bible. Did they even have meth back then?) Eventually, in 1993, I realized that if something didn't change dramatically, I was going to die before too long.

Right when I was starting to think about the gravity of my situation, my dad sent me a long letter telling me about a treatment center that several of my family members had been through. He made a very convincing case that I might consider checking myself in. So I did. Except for caffeine and nicotine, I haven't had a drink or toke or snort since that day (2/22/93, for those keeping score at home). Hallelujah.

This treatment center I checked into was different than what most people think of when they think about treatment centers. Their program was not limited to substance abuse. They treat all the isms: food addiction, sex addiction, workaholism... you name the ism and they'll treat it. That's because the basis of all their treatment is the idea that most of us are afflicted with the ism of codependency. Treat that and you all those other isms make a lot more sense.

Agree or not with the concept, it certainly worked for me. I knew almost immediately after walking into that room that I was going to be OK.

At some point during the 85 days I was there, I was handed a new concept of God. More than that, I was handed a new way of relating to the concept of God.

I had always thought and felt that one could get in serious trouble with God if one believed incorrectly. As a result, I was always terrified of the fact that I was not only in big trouble, but might even be in trouble for believing the wrong thing. By the time I left the treatment center, I knew that I could believe whatever I believed. In fact, I knew that I needed to be true to what I really believe, not what somebody compelled me to believe. Whoever or whatever this god (or gods) were, they could get along just fine, regardless of what I believed.

This led to an indisputable truth for me - I no longer had to fear. Life, death, god... no fear. Not too long ago, I was faced with a very serious brain surgery. At no time did it occur to me to ask some deity to protect me or make sure everything would turn out the way I wanted it to. I knew that regardless of how things turned out, the universe and I were going to be OK. I was not afraid to die. Of course my preference was to not die. I love life. I prefer to be alive. But when I was about to go under for the surgery, I realized that I was OK with whatever happened.

Part of my recovery was to accept that I was powerless over all the isms and that the only way to deal with that was through believing in a higher power. I was encouraged to find a higher power that worked for me. I had already realized the concept of god that I had learned in childhood definitely did not work for me. I came to believe that the important thing was to realize, on a deeply spiritual level, that I am not god. I needed to internalize the truth that I am not in charge. That is where I'm at now.

I describe myself as agnostic. I don't believe I can know whether or not there is a god or gods. The evidence that I have to work with is inconclusive. I strongly suspect that almost all religions come from a deep human desire to be OK. Part of being OK is having the hope that there's something out there that will keep us OK. That's there's something else besides life and death - that life has meaning beyond what we experience now. Religion is a very popular and sometimes successful means to that end - feeling OK.

I am OK with the idea that this (picture me stretching my arms out to my sides with palms up and open) is it. I have only today and that may very well be all there is. For me, life has meaning in the way I live today. There is sufficient meaning in trying to do the next correct thing. There is sufficient meaning in trying to treat others as I would like to be treated. There is sufficient meaning in tasting, smelling, listening to, seeing and feeling this moment. I don't need any reward - this life is good enough for me.

So there you go - god or no god, I'm OK either way.

P.S. It should go without saying that I believe everyone has the same freedom I do - to believe what they believe. I am not trying to make a case to convince anyone. I am trying to explain, to those who have asked, why and how I got to where I'm at.

Independence Day

For most of us in the United States, today is a day of family, floats ("parade" would have ruined the alliteration), food, flags and fireworks. It's a day when, at least for a moment or two, many of us feel pangs of patriotism for this country.

Lots of us have family or close friends who are serving overseas. My brother is serving as a Marine infantry sergeant in Afghanistan. This is his second tour in the middle east - he also served in Iraq. Everyday I think of him and ask the universe to keep an eye on him.

I am not writing this today to take anything away from US troops. I'm hoping the fact that I've got a bit of skin in the game will serve as my bona fides.

Today I see and hear many shouts out to the troops and their sacrifice. I applaud those shout-outs and believe them highly appropriate. What I don't see and hear much of are shout-outs to what we are supposed to be celebrating today.


Though it's all worth reading, I'm not going to quote the whole thing, but you can read it for yourself if you click on the image. Here's some stuff I like and am thinking about today:

When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.

Then comes the rather lengthy list of the sins of King George III (a startling number of which might be applied to the most recent George to hold the office of president - but that is a post for another time). After the list is the actual declaration by the "united States of America" of their independence from Britain. For some reason we usually have stopped reading by this point. Here it is:

We, therefore, the Representatives of the united States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these United Colonies are, and of Right ought to be Free and Independent States; that they are Absolved from all Allegiance to the British Crown, and that all political connection between them and the State of Great Britain, is and ought to be totally dissolved; and that as Free and Independent States, they have full Power to levy War, conclude Peace, contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. And for the support of this Declaration, with a firm reliance on the protection of divine Providence, we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.

That's all. No pithy commentary from me. Consider it my shout out to Tom, John, Ben and the rest of the boys. Thank you for putting this all on paper so we can drag it out once a year and remember what this day is about.

All's Well

Just in case anyone still checks this blog, I'm good. All results have been clear.

In August 2008 I had a melanoma removed from my temple. If you look at pictures from the tumor surgery, you can see it. We caught it very early. It was about .5 mm... barely thick enough to be classified as a melanoma. So gotta keep an eye on the skin.

An interesting detail - the only reason I was at the dermatologist in the first place was to try to get a handle on a small patch of dry skin on my forehead. My regular doc tried some things but they didn't work so he referred me to the dermatologist. This skin guy gave me some potions that cleared up the dry skin. He also said "While you're here, would you like me to give you a full body check?" Why not, right? Good thing he checked, right? Whew.

Also, early this year I started taking anti-seizure medication (Lamictal). This was a preventive measure only. After reporting to my neurologist that I had been experiencing some sensations that reminded me of how my arm felt before the discovery of the brain tumor, he suggested taking the anti-seizure med just in case.

So... still good.

Update

If you came here to read about The Tumor Project, go here and start at the bottom of the page. When you get to the top, click on September 2007 to continue.

Superstar

Photo by Dick Riniker - La Crosse Tribune

There is a lovely article in today's La Crosse Tribune. It's about my step-son Jordan, who has been selected by his school, La Farge High School, to represent them in the Extra Effort Award program the Tribune is sponsoring. Three winners in the area will be awarded one year's tuition at one of three schools - Viterbo University, Western Technical College, and University of Wisconsin - La Crosse.

Go Jordan!!

MRI Results Day

My amateur reading of the MRI turned out to be correct - less enhancement than 3 months ago. Less enhancement (white stuff) is always good. Dr. Minehan said, since this report is so good, we'll wait 4 months (was scheduled for 3 months) for the next MRI.

Click on the picture to see it bigger.



The left side of the image is the MRI from November (post-radiation). The one on the right is from Wednesday. The arrows point to the where the tumor used to be.

Not much more to say. We be celebratin'!

MRI Day

No matter how many times I do this (4 times now?), there seems to be no escaping the anxiety preceding the event. I have no reason to expect anything to change, but one never knows.

I had the MRI this morning and as usual, it was uneventful; I may have even fallen asleep at one point. I also remembered to alert the techs that I'd be asking for a copy of the imaging results. When we were done they told me to hang for a couple minutes and I could take the CD home with me. Uh oh. Then I had to decide if I wanted to look at it with neither professional supervision nor a radiology report to refer to. Of course I had to look. I'm not a professional, but it looked fine to me. Even less enhancement than before. We'll wait for the professionals to weigh in Friday. More then.

Saturday I came in 4th in a poker tournament that started with 38 people. Of course I would have liked to have come in 1st, but I'm actually tickled to have done as well as I did. My goal is always to survive long enough to get close to the money and hope to catch some luck coming down to the end. That happened but a couple other players had even better luck. Too much fun.

Working Stiff

That's me. I am now employed in the Graphics department as an assistant. The position is part-time, so I'll be working 4 hours every afternoon. I'll be making enough to make it worthwhile but not too much to effect my SSDI benefit. All things considered, it's a very happy situation. I'm sure the work will be challenging, at least at first, but that's a good thing. And I adore the people with whom I work.

No medical news to speak of. MRI next (not this coming, but next) Wednesday and will visit with one of my oncologists that Friday. Except for the remaining three months of chemo, I'm not taking any drugs. That's good.

Our 2007 income tax refund arrived in our bank account Friday. This year's was significantly meager compared to past years so we decided to blow it. To accomplish this most efficiently, we spent Friday night at Ho Chunk Hotel & Casino in the Wisconsin Dells.

I took a chunk of my loot and sat down at the poker table. I wasn't expecting to lose it all but I was prepared for it if it happened. I played for 6.5 hours and ended up earning just over $20 an hour. Good times. Very good times. It wasn't just that I came out ahead; it was just fun! I'm not ready to go pro or anything, but I didn't feel the least bit uncomfortable playing with these people. I usually play online and, as one might expect, people often behave boorishly. Not at the live tables. Everyone is quite cordial, in fact.

Lori spent her loot the next morning at the Coach outlet store. She was hoping to find The Bag and I believe she did. Here it is. She very happy with it and I understand why. I'm no expert, but it is a lovely bag. She also got a sweet wallet (it's the BRASS/CAMEL version) to go with.

We've had an unusually cold and snowy winter. Thursday we had about 15 inches of light, fluffy stuff and today we're getting at least 10 more inches of heavy, wet mess. Not good times. Here are some pictures I took yesterday:

From the back of the house looking at the garage.

From the garage (corner at left side of frame in previous photo) looking at the back of the house. Shot from the corner of the garage.

Front of garage. Shot from alley.

Another angle of Garage Mountain.

You can see that I'm going to have some issues with where to put this new snow. We shall see.

I've had my eye on a leather trench coat for several years now. I would see them at Wilson's Leather but never on sale AND my size. Until a few weeks ago. The price was obscenely low and Lori insisted I let her buy it for me. So I did. My expectations were exceeded. Good times.

And finally - here's a recent shot of the ol' bean. For those of you keeping score at home, there's new hair growing where we haven't see hair since the days of the dreads. Slow going, but good times anyway.

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, they're giving it to me from behind. 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.

---
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.)

---
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.

---
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).

---
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.) So what does my lovely and talented wife do? She took the wraps off the antique Singer and created magic.

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 Lori grabbed a hunk of black corduroy and made a copy of the hat. Then she added this super bad lining.

And here's the lining.

If you look closely you can see one of Lori's new business labels - Second Story Lori. My hat has the first piece of work affixed with the snazzy newness. I'm honored.

Let's celebrate my wife's lovingkindness and general ability to rock.

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.

In case you haven't checked recently, the ticker is rockin'. I don't want to say too much just yet, but there is talk of a dealer trying to help with getting the price down. More details on that once we know more.

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.