The Good, the Bad, and the Ugly

Apologies all around for the delay in posting this update. I have been a little woozy and somewhat physically uncomfortable since Monday. If you landed here without knowing anything about my ongoing health situation, you may want to start here and follow the back links to get enough information that you are not lost.

First, let's start with the ugly. On Monday afternoon, my doctor removed what was described to me as a "rather large" cancerous tumor from my bladder. The bad - despite expectations for an outpatient procedure, I had to spend the night in the hospital on Monday. But, the good - well, the good is REALLY good - (a) the doctors believe that they got the whole tumor; (b) while they are still waiting for the pathology report to confirm this, it appears as though the tumor was not nearly as embedded into the bladder wall as it appeared from the previously taken surgical photos, and I may not need to have my bladder removed; and (c) ALL of the people that I encountered at Moffitt were top notch.

The only way to look at this, at this point, is that Monday's surgery produced about the best possible outcome that anyone could have hoped. I am trying to temper my enthusiasm until the pathology report comes back, in much the same way that I did not allow myself to get too down about things when they looked a little more bleak. Still, it is my doctor's belief that whatever treatment remains, it is very possible that it will be medicinal in nature, as opposed to surgical - and any way you slice that, it appears to be good news.

While I was initially bummed that I had to stay overnight, I realize that it was absolutely the right thing. What upset me was that I was told it was outpatient, and the only reason I would be staying overnight was if there was a complication during the surgery. So, when I was coming to (but, still groggy), and realized I was being taken to a room, I got really worried. When I was told that things were very successful in the OR, I understood that it was just for observation purposes - not because something had gone wrong.

Random stuff - Every person within the medical profession that I have encountered since this whole mess started has asked if I am a smoker. I am smart enough to know that there is a strong link between cancer and smoking, but it seemed as though the only reaction everyone had was regarding smoking. I finally asked about this while at Moffitt. One of the anesthesiologists that was working on me told me that in all their time in medicine, they had never seen anyone with a tumor in their bladder that was not a smoker. Wow. I like the idea of being a trailblazer, but this isn't exactly what I had in mind.

More random stuff - The Moffitt Center is a first-class, top-rate facility. I realize that my hospital experiences have been pretty limited until now, but these guys did some things that really impressed me. They have complimentary valet parking - and the valet even refused a tip (we didn't have small bills - and he didn't have change - so, he told us to "get him next time" - amazing!). They gave my buddy who drove me full access to the floor's pantry - which was stocked with sodas, Gatorade, snacks, ice cream, etc. - all complimentary. Yes, I realize that I am paying for this, but it is nice to think that visitors looking to spend time with family members - some in pretty bad shape - aren't being nickeled and dimed for everything, least of all a can of soda. Speaking of visitors, there are no pre-set visiting hours. It occurred to me that these types of amenities are in place to ensure that any family and friends visiting cancer patients have one or two less things to worry about. How do you tell someone that they can only visit with their dying father or grandmother between 3-7 pm?

My buddy and I had the nursing staff (and anyone else we encountered) in stitches. I always try to be a good patient - heck, these people are the ones caring for me, and if you were in the position of giving care, who would you want to help - the guy who makes you laugh, or the guy who is a pain in the ass? Of course, my way of dealing with nerves is to just crack jokes - and my nerves were damn well shot. By the time we checked out on Tuesday, I think they were a little sorry to see us go!

Unfortunately, there is little to do right now except to sit back and wait for the pathology report. My next appointment is in 10 days or so. Keep your fingers crossed until then that all of this good news will pan out as such.

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Is Ignorance REALLY Bliss?

If you don't know the crazy, mixed-up story of my current health issue, you might want to start here, here, and here (at least skim!). Trust me, things will make a lot more sense. Caught up now?

If you have been following this story from the beginning, you should notice that I have tried to keep my sense of humor about things, as best I can. Sure, cracking jokes is my coping mechanism, in general, but I have been making a concerted effort to be as positive as I can about what is coming down the pike. I have a friend who has been suffering from his own cancer for about 15 years - someone who rightfully should have been defeated by his disease years ago, according to his doctors. It seems to me that his attitude, which amazed me every day before my own illness was anywhere on the radar, has helped him defeat his own cancer, almost singlehandedly. If I could duplicate that - heck, I should be in pretty good shape.

I wonder, though, if there isn't a fine line between keeping a positive attitude and burying your head in the sand, when it comes to what may lie ahead. Since I started writing about my health, I have probably downplayed the severity of what has been going on. Did I just not want to confront what was coming at me? Beats me, but if you will recall, at one time, I didn't give my doctor more than a 30% chance of being right in his cancer diagnosis. As of my meeting this morning at Moffitt, I am pretty well convinced that the initial cancer diagnosis was correct.

My visit was enlightening, to say the least. The new doctor, whose specialty is listed as "urological surgeon" took one look at the photos from my last procedure and immediately said that it looks like a serious reality that I will need to have my bladder removed. He concurred with the assessment that there is a large bladder tumor, and based on the size and location of the tumor, many of the less aggressive treatment options may not be available to me. That's the bad news - the good news is that someone my age - and relative good health - should have a better-than-average chance of full recovery (with, hopefully, full use of ALL my pieces and parts).

OK...before we start doing procedures like a radical cystectomy, I am sure that we need to make sure that it is (a) necessary, and (b) all other alternatives have been exhausted. To this end, I have a procedure scheduled for next Monday (7/9) where the surgeon will perform a biopsy - he tells me that he will attempt to get as much of the tumor removed as possible. After that procedure, we will be able to better discuss any and all available treatment options. Chemotherapy looks like a possibility somewhere in my future, as well.

Admittedly, I am a little more nervous than I was yesterday - concerned, too - and, heck, pretty damn scared, on top of all that. The whole idea that "ignorance is bliss" is one thing - right up until you realize that maybe this is a little more serious than you had really considered. For the moment, I have confidence in this doctor. He tells me that he did 80 of these operations last year (bladder removal) - that is 1 1/2 operations per week. On the one hand, it sounds like he knows what he's doing - from what I have read, the most succssful patients are the ones who have the most experienced doctors. On the other hand, there are a few more bits of research that I need to do. For instance, if this guy does this surgery with this degree of frequency, is it because it is his default answer for everything? A guy comes in with a sprained toe, does he think he needs to remove a bladder? Also, of the 80 surgeries he performed, he admits that none of them were performed on anyone as young as me. Perhaps I need to seek out someone who has performed this surgery on someone my own age?

I will try to update with any new information as it becomes available. Or...I will just write my next post about something fun - like fried chicken!

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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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