The Waiting is the Hardest Part

The Tom Petty song has been going through my head the last couple of days. It seems like the very first lesson I learned in dealing with illness (still, as of now, technically UNdiagnosed illness, I might add) is that my patience will be tested - almost daily. Patience has never been one of my strongest traits to begin with, so this should be quite the adventure.

If none of this makes any sense to you, your best bet might be to start here.

The past few days I have been dealing with a seemingly endless run of phone calls. It is the "appointment circle of life."

• Call (the cancer center) and schedule an appointment - hear that the next available appointment is 3 1/2 weeks away.
• Argue that there must be an appoinment sooner than that.
• Listen as I am told that an appointment MIGHT open up, but there is no guarantee.
• Call the urologist's office and ask if it was ideal to wait 3 1/2 weeks for an appointment, or should I start to consider other options?
• Wait for phone call from the urologist.
• Wait for phone call from cancer center to tell me that there is a cancellation.
• Call from urologist - he thinks we should punt the cancer center and try another specialist (university hospital).
• Call from new specialist to schedule appointment - need to do pre-appointment triage first.
• Call new specialist to schedule appointment.
• Call from cancer center telling me that an earlier appointment opened.
• Call to urologist to confirm cancer center appointment and dispose of new specialist appointment.
• Call to cancer center confirming new appointment.

It may not be the cancer that kills me - but this stuff will drive me nuts. Even still, the "pushed up" appointment at Moffitt isn't until July 5. It's only next week, but it seems like a forever-and-a-half.

Instead of waiting around here for the appointment next week, I decided that if I have to wait - then I am going to get out of town for a couple of days. I have some flex time at work, and the July 4 holiday coming up, so I booked a flight out of town Saturday morning. I figure that if I am still feeling healthy enough to do something fun now, why wait until after treatments start and I don't feel like (or physically cannot) do anything fun for any extended period of time.

Fortunately, I have good friends that recognize I need a little push every now and again to do these types of things. Friends that care - and live in fun places that I would want to visit. So, a free flight and free rental car later, I am off to the Taste of Chicago this weekend. Fortunately, the Cubbies are in town, too, and the White Sox are home early next week against the Baltimore Orioles. Food and baseball. Seems like a no-brainer to me.

In the meantime, Tom Petty will continue to ring in my ears. Food and baseball should work to be a good distraction. Besides, at least it's not that God-awful "Live Like You Were Dyin'" song that I manage to hear on the radio about six times a day!

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Sometimes it's not what you say...

If you arrived here by clicking a link in an email from me or don't already know the beginning history of my current health issue, you may want to start here so that things make a little more sense.

When I last wrote, I mentioned that I was due for a procedure that would help identify the alien creature that is inhabiting my body. This past Thursday, I had a friend drive me to the hospital and checked in for a procedure that was medically called a cystoscopy with a transurethral resection of a bladder tumor. In plain English, the doctor was going to knock me out, stick another tube up inside me, slice off a piece of this alleged tumor, and perform a biopsy to ensure a difinitive diagnosis. When I checked in, I wasn't sure if I would be staying overnight in the hospital or leaving after the procedure. Given my general distaste for all things medical - I was in a reasonable frame of mind.

The waiting really was the hardest part. Once they started the IV in pre-op, things started to move quickly, and I ended up becoming a little more relaxed (which I can only assume was the result of a sedative). I remember being rolled into the operating room, and the anesthesiologist making about 10 seconds of small talk and then covering my mouth with what he described as "pure oxygen." The next thing I knew I was awake in recovery.

I guess I could best describe how I felt when I woke up as disappointed. I was in no pain (the drugs were probably still free-flowing in the body!), there was no catheter attached, and only about an hour and a half had elapsed. In my mind, this wasn't very good. The doctor told me that the procedure would take longer if he felt that he was going to be able to "make some progress" on repairing/removing rather than just identification. Since the surgery took such a relatively short time, I had to figure that he got in there and didn't much like what he saw. I was still groggy, but I remember the doctor coming in to talk to me and he showed me some of the pictures that he took - but, everything was way too hazy for me to make any sense of what was happening. I arranged for a post-op appointment the following day, and went to rest, as instructed.

I didn't know what to think when I arrived at the doctor's office the next day - but, in poker terms, I was absolutely "on tilt." The receptionist greeted me with some degree of surprise, as if to say "how are you up and about and in here for an appointment?" She also had a look in her face that made me think I was about to die. Hmmm....OK. The doctor came into the waiting room looking for another patient, spotted me across the room, pointed and said "you - in here!" I guess it's a good thing that your doctor recognizes you and wants to see you, right???

He sat me down and explained, as best he could, what happened during the surgery. He told me that when he got a good look through the scope, he was confident that the obstruction in my bladder was, in fact, a "massive" bladder tumor. OK...probably didn't need to hear the word "massive," but I am hanging in there. He immediately suggested that I seek treatment at the H. Lee Moffitt Cancer Center in Tampa. He mentioned two doctors names, who he described as the best "bladder guys" in the southeast. This was probably the first time that cancer seemed real to me. Incidentally, the folks from Moffitt seem pretty together - they had actually called me BEFORE I ever left the hospital the day before. I hadn't returned their call, as I was waiting to talk to my doctor first - but, I was impressed that they seemed on top of things.

I asked about the biopsy - did he do one, when would the results be available, etc.? He told me that he didn't actually do a biopsy, as he had "serious concerns" about the mass. His fear was that if he stuck a blade into the tissue to secure a piece for biopsy, he would create a "bloody mess." I only THOUGHT I didn't like the word "massive" until I heard the phrase "bloody mess." As a matter of fact, I am pretty sure that if I had never asked the question, I would probably be a better person for it today. I was told by my friend who accompanied me to the doctor that when he used that phrase, I immediately went flush and probably didn't hear another word he said the whole visit. His overall assessment was that the folks at Moffitt would have the proper tools (lasers to coderize the bleeding, perhaps) to deal with such a medically dicey situation.

Apparently, there are still some things that could be causing this, but are not very likely. One possibility is diverticulitis or diverticulosis. Really, the only reason this is even a possibility is because of the location of the mass, not because of any particular symptoms that I have. To that end, I am calling this remote. However, he does want me to go and get another scope (other end this time) just to be on the safe side. Oh joy. The other remote possibility is that it could be residual infection from the sutures from the previous surgery. Again, this is remote, too, as the location of the mass (anterior) is not consistent with where you would find an infection from sutures. If I was giving my urologist a 30% chance of being right before, I would have to reassess that to be about 90-95%.

How about some good news? First, I am feeling (physically) surprisingly well. I have been amazed by this all weekend. I expected to be attached to a catheter and hopped up on Vicodin. That hasn't been the case at all. I could probably, physically, go back to work tomorrow, but I will take the day to get some details in order and make some appointments. Second, I am glad that the doctor recognized that he needs help in this matter, and referred me to someone who is better equipped to help me. I think doctor's egos sometimes get in the way of the best medical care - and other times, when a doctor is intrigued by a diagnosis (or something he hasn't seen in 20+ years), that s/he might "try" to fix things - kind of like a mechanic who doesn't really know what is making that noise under your hood. Lastly, I am overwhelmed and humbled by the outpouring of support from the blogging community, my friends, and random others who don't even know me - or barely know me. I plan to do a separate post highlighting the other blogs who have picked up on this story, but I did want to share the idea that if laughter is truly the best medicine, I may well live a long and happy life after all.

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What do you do when you don't know what to do?

Things have been a little crazy around here lately. Lately, it seems like it is always a little crazy around here. Still, it has been a little MORE crazy than usual within the last couple of weeks. Truth is, I haven't been feeling well for some time now - I mean, I'm talking months. My symptoms are identical to a situation I had three years ago, when I had surgery to have a very large stone removed from my bladder. At the time, my urologist said that it was the largest stone he had ever seen in over 20 years as a urologist (hey - I win!). The stone was removed, but since I didn't really care for the doctor, I didn't do the follow-up to see what caused the stone or what treatments might be needed to prevent the same from happening again.

Fast forward to the present day. Back in January, I knew that I wasn't feeling well, but since my symptoms were identical to the last stone, I knew what I was in for, and I could tolerate being uncomfortable for a little while - and I didn't really fancy going back to the urologist, I suffered quietly, as best I could. Besides, I didn't want to miss my trip to Texas or the spring travel season for work while I was recuperating from surgery. In retrospect, and in no small part based on how I feel right now, I do realize that was utterly stupid.

When I got back to Florida after spring travel, I started to see a doctor and get the wheels in motion to get this stone out of me. Unfortunately, I learned that doctors are not really willing to rely on my own diagnosis and just schedule me for a surgery requiring multiple incisions. Instead, I have endured a battery of tests - the result of which is that they have found a mass in my bladder that is about 6.5 cm. Confident that this is the stone to which I referred, I again requested that they slice me open and remove the stone so that I could get on with the business of enojoying my summer. My new urologist, before slicing, insisted on doing a cystoscopy (a procedure that no man should ever volunteer for!) and getting a "look" at the mass.

Upon viewing this mass, the doctor informed me, in no uncertain terms, that I have some form of bladder cancer. Knowing that this is almost impossible, I informed the doctor that he was clearly incorrect - merely viewing my (abnormally large sized) stone as something else. Again, he questioned my ability to self-diagnose. To that end, he claimed to be confident that this is not a stone, but rather some form of cancer.

As a 35 year-old, non-smoker who is not exposed to industrial chemicals, it wouldn't seem as though I am in any of the risk categories for this type of cancer. But, the urologist doesn't see it that way. This means that I have to go in for another scope tomorrow (Thursday) to find out exactly what is going on in my bladder. I estimate the urologist's chances of being right at about 30%. However, since hearing this news about 10 days ago - I have been a little freaked out. OK...I started out a LOT freaked out, but I am much better now.

Up until now, this blog has been at least semi-anonymous. I really couldn't figure out how to tell all of the people that I thought should know, so I went for the completely impersonal approach. I deal with talking about myself best that way. I also did some inner battle with whether or not to say anything until I knew something more concrete. So - I almost wussed out on saying anything until hours before I am supposed to go in for surgery. Nothing like pulling the pin out of the grenade, tossing it in the room and then taking off running.

Let me be clear about a few things - in the last week and change, I have done a lot of reading about cancer - this cancer (that I may or may not have), specifically. I have learned even in the worst case scenario, this is not a death sentence. That's the good news; the bad news is that there is a serious likelihood of recurrence somewhere down the road. While death is not likely, some of the things that I may have to live with aren't all that appealing, either. For instance, at 35, I am not sure that I am looking forward to a lifetime of "touching, holding, cuddling, and caressing." I am pretty sure that I will not take the news very well if I am told than I need a radical cystectomy. The thought of having to drain my fake bladder every few hours manually is more than I can stand to think about. I have mentioned that I really do still think that this is just a stone, right?

I have contacted some of my favorite bloggers and asked them to post about the personal finance angle of learning potentially life-altering news. JD from Get Rich Slowly is going to feature this story on his blog in the next day or so, and hopefully, there will be a number of people who can offer up some advice - because I admit to being baffled with a lot of this stuff. And, as independent a guy as I am, going through this alone has me just a touch petrified. Hopefully, other bloggers will pick up on the discussion, as I feel this topic (personal finance as related to possible health issues) is somewhat underrepresented. I will post a follow-up as soon as I can.

Also, I ask that you try to take just a few things away from this post. The first is that I am not looking for sympathy (heck, I don't even think the cancer diagnosis is true yet!), and, even if it is true, I don't think I am going to die. I am not looking for an outpouring of support and prayer (though, I am not going to kick anyone away with a better pipeline to the "Big Guy" than myself). I am fortunate that I have decent health insurance and more sick leave than I ever thought I could use. I hope that any friend of mine who reads this takes away the idea that if your body is telling you something is wrong - and you know it - go to the doctor, go directly to the doctor, do not pass 'Go!', do not collect $200. I know that I have learned my lesson with my own version of "Scared Straight!"

This might be a good time for me to make a sales pitch for you to sign up for the email updates using the block to the upper-right. You won't get spam - and lord knows I don't post all that frequently, but you will get an ad-free, black-on-white, basic formatted HTML version of any updates from this blog only (your name won't be sold or used for any other unsavory things).

This story is updated here.

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The Hot Rockin', Flame-Throwin' Carnival of Personal Finance

When I was a kid, I would sometimes listen to the Z Morning Zoo before school. Scott Shannon and Ross Brittain hosted, with what seemed like a cast of thousands. I always remember one of their bumpers being the "Broadcasting live from the top of the Empire State Building, the Hot Rockin', Flame-Thrown' Z-100!" Side note of Travelin' Man trivia - I was listening when they began broadcasting, though, to this day I have no idea what I was doing awake at 6 am on an August morning. But, I do remember that the first song they played was my favorite song at the time, Survivor's "Eye of the Tiger." Seems like a hundred years ago.

Celebrating firsts (sort of) with a radio theme is JD over at Get Rich Slowly. He is hosting this week's 2nd Anniversary Carnival of Personal Finance. These articles are the best of the best from the personal finance world over the last two years. It is kind of like the pro football, basketball, hockey and baseball All-Star games all rolled into one. I was grateful to have my article, Why Hoarding Airline Miles is a Fool's Game, listed. JD's top picks are marked with a star, and I also picked out a few of my favorite articles for you to check out:

Picking money over time - are we working too much? is at Money and Values. I have mentioned in the past that I have an inability to take time off from work. It is stupid. I need to - I just don't. Maybe if I keep mentioning it, I will get the hint.

I just had my performance review at work, and one of the few things for which I was dinged was disorganization. My office desk is a mess. I am one who operates on the theory that if I had time to clean my desk, I wouldn't be getting any work done. Still, I am always striving for improvement. Here are 16 ways that being disorganized costs you money.

I had a conversation with a friend recently who was worried about money. When I hear people talk about money, I immediately shift into "how can you make more money" mode. Here are 25 Ways to Make Money Quickly and Easily (and Legally)!

Dave Ramsey popularized the debt snowball, but what do you do when you have already paid down all of your debt and started your emergency fund? How about a SAVINGS snowball?

Another conversation with a friend involved the idea of being frugal. I think she interpreted the term to mean "cheap." Fortunately, Money Walks came along and posted Frugal versus Cheap. If I had this article on hand, I could have won my argument a lot quicker!

Those are my Top 5, but there are plenty more listed that may be just what YOU were looking for. Check it out!

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I Miss Omaha!

I mean I REALLY miss Omaha.

This is College World Series week (as though you didn't already know!), and I should be in Omaha. This (psuedo-)annual trip is one in which the planning for the following year begins on the plane ride back. For me, I am never ready to leave when the trip is over - so, I am most gung-ho about going back right when we leave.

I have been talking about this year's Omaha trip since college baseball season started. I caught games in Houston (Rice vs. Long Beach State) and Nashville (Vanderbilt, with MLB's #1 draft pick David Price pitching, versus Florida). I went to the ACC Baseball Tournament in Jacksonville. Heck, I am a college baseball FAN. I planned the trip with my buddy who is heading off to law school in the fall at Louisville. We are both UNC fans, and we always suspected that UNC may make the trip to Omaha with us, but neither of us ever expected Louisville to be there, too. I feel bad for my friend because I bailed out on him at the last minute.

And now I miss Omaha.

I miss the "Greatest Show on Dirt."

I miss my annual steak dinner at Johnny's Cafe. While we are on the subject, I also miss Lo Sole Mio (I would have never expected to find one of the best Italian restaurants around in Omaha!) and the Bohemian Cafe.

I miss the carnival-like atmosphere around Rosenblatt Stadium.

I miss the Henry Doorly Zoo.

I miss the Jesus water people.

I miss getting a free Slim Jim with the local paper every day on the way to the game. Hey - you need the water to wash down SOMETHING, don't you?I miss the brisk walk up the hill - usually in temperatures north of 90-95 degrees - with throngs of baseball fans all hoping to witness some of that CWS magic.

I miss the Titan House. For that matter, I miss all of the rented houses along 13th Street that have people partying from early in the morning until long after the last out is recorded at night.

I miss Zesto's.

I miss staying in the team hotel. One year we stayed in the South Carolina host hotel and one year with LSU. I will never forget having breakfast one morning with the entire South Carolina team. The starting pitcher was sitting about three feet behind me. Cool stuff.

I miss the LSU fans - and the Horns, too. These guys know how to travel. LSU folks all caravan with their giant RVs; hosting large tailgating parties - whether LSU is playing or not - with crawfish boils, jumbalaya, etc. The UT fans have the grills out smoking meats "low and slow" early in the morning.

I miss the eight flags flying over Rosenblatt - the ones that are lowered one at a time, as each team is eliminated from contention.

I miss Harold Reynolds.

I miss the "ball girls" - the ones whose responsibility include retrieving the foul balls hit onto the screen straight back over the grandstand. If the ball is caught - cheers from the crowd; if the ball hits the ground (for ANY reason) - unmerciful boos. One of the great Omaha traditions.

I think Harold Reynolds misses the ball girls, too.

I miss the live organist.

I miss how the whole town embraces "their" event - how when you walk into a restaurant, they don't ask what you want to drink, but rather who won the early game.

I miss the ticket scalpers - they actually seem nice and friendly - and you can still get reasonably priced tickets.

I miss Sammy the Owl - the only real mascot I have seen in all my years in Omaha.

Mostly, I just think I underestimated how much I would miss being a part of it all.

And, if for whatever reason, I am not able to make it back next year, I am going to be really bummed again.

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Deep Fried Jacksonville

Jacksonville is one of those cities that doesn't even really belong in Florida. It gets cold in the winter; Spanish is not the PRIMARY language spoken; and, anywhere else in Florida, hosting something called "The World's Largest Outdoor Cocktail Party" would be considered a badge of honor - not Jacksonville. No, Jacksonville is a misplaced southern city. Most folks realize that the rest of the state is not part of "The South," but rather is at the end of the off-ramp from a secret exit off of the Long Island Expressway.

I decided to take a few days last month to see the ACC Baseball Tournament in Jacksonville. From previous visits, I have found Jacksonville to be lacking somewhat in viable dining options. Fortunately, just prior to this trip, I found out that my cholesterol level was at a very respectable 151. Armed with that information, and taking into account Jacksonville's southern roots, I went out in search of some serious fried critters.

My first serious food stop was Clark's Fish Camp. This place was recommended by a serious foodie buddy, so I was really looking forward to it. Finding Clark's is a bit of a challenge. It isn't on any main road - requires a number of turns to get to from any direction, and is past a road sign that reads "DEAD END." I am kind of amazed that I made it there. I didn't get an exterior shot of this place because I arrived in the evening, with very little daylight - and there ain't much lighting on the exterior of this place to take photos. The parking lot (and adjoining street) was PACKED with cars.

Clark's is famous for their wildlife theme. Greeting you as you walk in the door is this nature scene...

"Florida Kitsch" is the best way I can describe the decorations that are not dead/stuffed animals...

This was the antler chandelier (one of many) that hung over my table....
If you want to see the food, continue down below the fold

I ordered the fried shrimp and fish combo, with fries and mac and cheese.
My buddy recommended the shrimp, and I should learn to take his recommendations very seriously. The shrimp was the star of the plate - by far. They were flavorful and plump - and were not overpowered by the light breading and frying process, which can often happen. Tilapia, which I like (in general), is not a fish that is coducive to frying very well. The nature of the fish is that it takes it's flavor from the preparation - and the frying didn't do well - it tasted like nothing. Catfish, cod, grouper (yeah, right!) - anything would have been better than tilapia. The fries were probably a little better than OK - and the mac and cheese was ordinary. It wasn't until after I left that I realized that my plate did not include the promised hush puppies. I was plenty full, so I didn't even notice them until I was discussing my dinner with a friend later on.

I screwed up on the ordering - should have just gotten the fried shrimp. However, my plan was to hit O'Steen's in St. Augustine at some point during the weekend, and I knew I would be having their fried shrimp (maybe my favorite), so I balked and split the meal with fish - my bad.

I do not often order dessert, but I was in the mood. What better way to end a deep-fried meal than with...
deep-fried cheesecake with a raspberry sauce. Mmmmm...good. I tried to get a picture of the inside of one of these bad boys, but the lighting would not not cooperate with my camera (and/or operator), and all the photos came out too blurry to use. I ate about half and took the rest back to the hotel. Bad move - this wasn't something that fared well after cooling off substantially. The cheesecake was wonderful warm. It was almost just a different dessert altogether than just to think about cheesecake. I have never even tried any of the deep-fried "fair" food (fried snickers, twinkies, coke, etc.). It just sounded good - for that night. The texture changed completely (not soggy), though, when they cooled - again, not horrible - but, it just wasn't the same experience that I had earlier. While they were no longer hot in the hotel room, they weren't cold, either - just room temperature - and it just didn't work for me.

If I am ever sentenced to be in Jacksonville again, I would give this place another shot - but, I will probably stick to the fried shrimp!

Clark's Fishing Camp • 12903 Hood Landing Road • Mandarin, FL 32258 • (904) 268-FISH (3474)

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