Monday, December 19, 2011

Yes, Dursin, There Is a Santa Claus

I was thinking the other day about how I stopped believing in Santa Claus.  I think I may have been in kindergarten, and my brother asked my Dad how the cookies I had left for Santa were.  I easily put two-and-two together after that.  I probably has suspicions for awhile, because my Dad had insisted that Santa liked beer better than milk.

I don't recall being very traumatized by the event.  I probably knew about the logistical impossibility of a man in a flying sleigh pulled by reindeer giving presents to all the good girls and boys, and skipping the naughty ones.  Like everything else, I believed it because I was told to believe it.  I probably believed in Han Solo, too.

But, when Santa goes, so goes the Easter Bunny, the Tooth Fairy, even Cupid.  And let's be honest, it wasn't long after that I became skeptical of the Virgin Birth, a man rising from the grave, and especially Hell.  All myths created (in the same vein as Santa) to keep people in line.  "Don't be bad or you'll go to Hell" is pretty much the adult version of Santa's naughty list.  And yet, there are sane adults that believe in this stuff.  Gotta have faith, I guess.

I don't understand, though, as a rational human being, why we outgrow believing in Santa, but we keep believing in Jesus and Mary and God, the silliest one of them all.  Really, if you want to believe in nigh-omnipotent beings, then didn't the Greeks have a better idea?  One god for every aspect of life (fire, war, love, etc.) who seldom got along, so when there was an earthquake or tsunami or something, it was really just the gods squabbling with each other and us pawns getting in the way.  Sounds more rational than God, don't it?

Honestly, I would like to believe in things, like an afterlife, or some kind of guardian angel watching over me, or Santa.  My mind will simply not allow it, but that's okay.  Even as a rational thinker, I still believe in the spirit of Christmas.  I believe that does Santa exist, inside everyone, even those who don't celebrate Christmas.  I don't believe in a bellowing, cookie-stealing fat man.  I don't even believe that we're celebrating the birth of Christ (who the Hell knows when he was born?) It's the spirit if giving gifts to loved ones to show appreciation that makes this a special day, not some long dead dude.  Why you celebrate or how you celebrate doesn't matter.  It's goddam Christmas, for Christ's sake.  Sit back and enjoy it.  

Monday, November 28, 2011

Life's Like a Movie...

I am usually very "meh" about Thanksgiving.  Maybe it's because I don't have a large family to reconnect with.  Maybe it's because I don't really love turkey, although stuffing is a genuine favorite of mine.  Maybe it's because it finally dawned on me that the poor Native Americans helped out those hapless Pilgrims to make that first Thanksgiving possible, and then those jerkface whities went and kicked them off their land and killed most them.

Whatever the reason, the holiday never resonated with me all that much.  However, this year was a tad different.  I enjoyed the Hell out of this one.  Not because I was thankful to be healthy after the months of crap (I don't need a day for that.  I'm thankful for that every day).  Nope, this year, I was thankful for The Muppets.

This Muppets thankfullosity goes back a long way.  There is a classic story that has now been passed down to my nephews of me in nursery school (which I guess is now known as pre-K) being asked by my teacher what I was thankful for, and I answered, "Kermit The Frog."  The teacher, rather stunned, as most of my classmates were thankful for their families and their whatnot, replied, "Whaaaaat?"  And I responded, with added fervor, "Kermit the Frog!"

As life tends to do, I have come full circle.  Thirty years later, I am once again thankful for Kermit the Frog and company.  I saw The Muppets on Thanksgiving with my roommate and her family, probably some of the same people I saw the original Muppet Movie with back in 1981.  And, movin' right along, decades later, seeing the current incarnation, and I think I laughed just as hard.  I naturally had high expectations, so there was also a part of me that figured there was a chance that this movie would not live up, since most "revivals" do not.  Let's face it, most of my childhood loves have been brought back and crapped on (Transformers, G.I. Joe, A-Team, Garfield, etc.).  And with Jim Henson not involved (because he's, well, dead), there was at least a 60% chance this was gonna suck.

Thankfully(!), it did not.  It was clearly a love letter to the original concept, made by fans, for fans.  Not only did the old sense of humor return, it become fresh again, while paying homage to the original.  There is even an appearance by Orson Welles' "Standard Rich and Famous Contract" that Kermit and Co. received back in 1981.  Stuff like that made me chuckle, for sure, but when they played the actual Muppet Show opening theme song (You know the one.  "It's time to play the music, it's time to light the lights..."), that's when I really felt it.  Seriously, I was moved.  And that almost never happens.

Not only did they stick to what made the previous movies and show funny in the first place, the filmmakers also used the fact that it's been a long time since we've seen a Muppet as part of the story.  Whether or not the Muppets were still relevant was a significant part of the plot.  At the end of the movie, it was discovered that they were.  And this was definitely a case of life mirroring art.

So, I'm not going to give away anything else, just see the damn thing.  You may not get as into it as I did.  it may not tug at your heart-strings.  You may not giggle like a school girl for the entire thing like I did.  But you may.  And maybe, like me, you will realize that there can be joy in these kinds of things.  Maybe you will experience it like a 5 year-old who was thankful for Kermit the Frog.  I can only hope so.

A facebook acquaintance of mine said in his status, "If you don't like The Muppets, you have no soul."  Maybe a little harsh, but still...  He summed up in one sentence what it took me a whole blog post to do, so who am I to question?
                   Free song downloads with Muppets tickets.

Tuesday, November 08, 2011

I Have a Blog, Too

As I write this, I am receiving my last treatment of rituxinab, the wonder drug that is supposed to prevent the return of my Wegener's, and is apparently being used to treat lots of other stuff these days, so here's hoping it works or a lot of people will be in big trouble, not just me.

So, to me, this means I should look towards the future, and stop worrying so much about the trials and tribulations of the past nine months.  God knows you've probably heard enough about it, and I'm sick of re-hashing it, anyway.  But to look toward the future, I want to look into the not-too-distant past.  Saturday night, to be exact.  Let's step into the Way-Back machine, shall we?

My friend's cover band was playing the 11th Annual Lupus Pub-crawl that evening, and I was helping out, as  usual.  I must admit, this entailed a lot less work than their other gigs, since this place had their own sound equipment, and the band that usually plays there allowed us to use their stuff.  So, I basically showed up, carried a mic stand, some pedals, and then drank a lot.

So, I'm standing off to the side, watching the show and the pub-crawlers, and this young lady next to me strikes up a conversation.  Like myself, she has nothing to do with the pub crawl, but simply came in to use the bathroom and heard the music and wandered in.  She asked me if I danced, and I replied, "Define dancing."  At least the treatments haven't damaged my sense of humor.  So, we danced a little, and during the break between sets, I introduced her to the drummer and asked her if she wanted to hang with us after the show.  I should point out here that, since this was just the second stop on the pub crawl, the show ended at 7:00.

During the course of events, I found out a few things about this girl.  She liked Goth music, she was a writer, and, oh, she actually had a boyfriend.. in Utah.  So, this naturally set off a buzzer in my head, but while at dinner after the show, my band buddies all said that it didn't matter, that they saw the way she was looking at me, that even if it was true, this girl was a sure thing.  So, I pressed on.

After dinner, we re-joined the pub crawl at another bar, and more drinking and dancing ensued.  This time, the dancing was getting a little closer (and to be perfectly honest, she was kind of critical of my dancing, which I have already admitted sucks.  Cut me some slack, lady.  I'm as white as they come).  As the night progresses, she begins taking my hands and putting them on various parts of her body.  Despite all of that, however, she whispers in my ear, "You know you're not getting paid tonight, right?"  Obviously, that should have set off tons of buzzers, but, forgive me if I'm thinking that actions sometimes speak louder.  She and I eventually leave the band and move on to one more bar, closer to where her car was parked, and closer to my home, as well.  More dancing and touching.  She delicately places my knee in her crotch and my hands on her ass.  She eventually needs food, so I take her to an all-night diner and buy her a sandwich.  She hasn't had a drink in awhile, but claims she may have to sleep in her car rather than drive back to Gloucester.  I offer her my couch to sleep on, and at first she seems that she's down with that, but as the night moves on, she says she will, in fact, drive home.  Apparently, she is in love with her boyfriend, although she told me that he lives in Utah, they have not slept together and they have been together less than a month.  Oh, and she's into bondage.  I call bullshit, but accept her ride home and assume she made it back to Gloucester in one piece, but, y'know, who cares?

Now, for some reason, this night really got into my head.  I'm not sure if I'm mad at myself for allowing this girl to cock-tease me all night, at her for being a cock-tease, or at society in general for allowing it to be okay for a girl to do this for a fellow human being.  To be perfectly honest, she's lucky I'm a nice guy and not some crazy.  Seriously, girls have been killed for less in this city.

So, here's where the looking to the future part comes in.  I told this story to my friend Heidi, and her response was that I should have walked away at the mention of the word, "boyfriend."  I told her that I didn't want to be That Guy, who is only out for sex and nothing else.  Even if that is true 90% of the time, remember, in this case I was minding my own business until this girl came along.  Her point was that I have to be a dick more often, especially in the world of dating.  This, of course, is not the first time I have heard this, but the problem is that it not only goes against all logic, but it also goes against everything I've been trying to do for years.  Not to mention the fact that I thought that my recent medical issues had made me realize what is important in life, and being a dick was not one of the important things.

Naturally, I shouldn't be a dick all the time (fun as it may be).  Just when women are being bitches, apparently.  This is a sad truth, because if you are not a dick to a woman who is being a bitch, then you will be walked on.  Plain and simple.  And I've been told the reverse is also true.  So therein lies the rub.

The real problem is that it's pretty much like opening Pandora's box.  You get a angry at one person just for being a bitch, and pretty soon you're angry at everyone.  And I've been Angry Young Dursin before.  It ain't pretty.  But he was confidant and happy and had a lot more sex, so I guess there's a trade-off.

You've been warned. 

Tuesday, October 18, 2011

Back in the Saddle. Now with More Perspective!

I have returned to Harvard-Vanguard for my six-month re-dose of rituximab, which, in case some of you have forgotten, is the chemo drug that is supposed to keep the Wegener's away.  My friend told me to think of it as "maintenance," but just being here makes me think back to the Spring and how lousy it all was.  Hard not to.  I'll be sitting here for about 4 hours by the time I'm done.  Not much to do but think.  Now that I've watched the latest episode of Walking Dead online.

What it really means is that I haven't been here for six months.  My last treatment was in April, and they told me that I would probably need another round in six months, and here I am.  Physically, I've been feeling very much like myself lately, back to work, gyming it, walking without feeling like I was going to suffocate... normal stuff.  Mentally, I've had this hanging over my head for six months, so in a way I'm glad it's here and I'm getting it done.  On the flip side, I have three more of these coming, and the small matter of there not being any long-term data on the effects of rituximab.  So, ten years from now, I may not have Wegener's, but I could have grown a second head because of all this.  I don't know whether I should be nervous or think that's really cool.

Getting back to normal as been a great thing (and it will be even greater when the steroids go down and I can get off most of these pills), especially when I think about how bad things were when I was in the hospital.  Six months really isn't a long time to recover from all that crap.  I am definitely appreciative of everything I have, especially the little things (Long-time readers may remember my description of how taking a shower was a total pain in the ass a few months ago when I had the chest tube.)  And yet, I find myself getting very upset when people make a big deal out of what I now consider insignificant details.  Especially issues that arise at work.  People keep referring to the "problems" they had last semester when I was gone, and I want to say, "You didn't have problems.  I had problems.  You just couldn't get sound to come out of a laptop." I realize that my job is important and I will absorb a tiny bit of the blame for not having anyone prepared for this kind of extreme circumstance, but I kind of doubt that anyone would have been prepared for it anyway.  It's not like I planned to be out for four months.  If it were anyone else, I'm sure there would have been   I still take what I do seriously, and most people at my job have been great and are really just glad to see me up and about, but it is human nature, I suppose, to focus on the negative sometimes.  The real truth, looking at it with a little perspective now, is that the audio-visual problems at CGS are small potatoes in the grand scheme of things.  Especially when you think about having a lung filled with gunk and draining it out with saline every six hours for days on end.  My apologies to the faculty, but that's the way it is.

Obviously, my rant is not going to change anything.  In fact, it's kind of sobering to think that my job itself, something I've done for hours and hours for over a decade, is kind of insignificant in that damn grand scheme.  But this is a good thing, actually.  It keeps me on a very even keel.  I have often said that I work to live, not the other way around, and that has never been more true.

Years ago, there was a big lecture going on with a guest speaker that was getting paid gobs of money to come and talk to the students of BU.  For whatever reason, our sound system was acting funny that day, and in the first few minutes of the lecture, I asked the faculty member who put it all together if he wanted me to interrupt the speaker to switch the microphone and see if that would solve the problem.  he said that it was fine the way it was, so I walked away.  However, several students complained, one even leaving an anonymous note on his door, saying "You should have listened to your sound man."  I felt pretty guilty about that, despite the fact the whole incident, even though I had done all I could.  The Dean of the college, and the most amazing boss I've ever had, gave me some great advice.  She said, "Life is long."  It's been ingrained in us to think that life is too short and we should play hard (or whatever that 80's slogan was.)  In fact, life is long.  I've just experienced the longest six months of my life, and now, to quote The Boss, "I'm ready to grow young again."

One down, three to go.  And then, look out world.    

Monday, August 29, 2011

How to Recover from a Rare Disease in 8 Months or Less

I thought I would do a little recap of the whole saga here, as at my grandmother's wake the otehr day, all I heard was how good I looked.  Granted, I was in a funeral home, so I guess not being in the casket can be construed as "looking good."  Some of this may be a sort of repeat for some of you loyal readers.  think of it as one of those "Previously on the Matt Dursin Show..." sort of things.
As 2011 began, I was driving cross-country with my friend Brom, who was relocating to L.A. to pursue an acting career (We detailed the trip here, for you late-comers.)  Despite the fact that I ate like Andre the Giant during the trip, I think I can safely say that I began 2011 in probably the best shape of my life.  Of course, I had never in my life been in very good shape, but still... Before the trip I was averaging 300 crunches a day and lots of push-ups and bike-rides and was staying away from fast-food and even drinking less beer (I know.  Shock!  I should have seen it as a sign that I wasn't feeling myself).  I returned to Boston at the beginning of Jabuary, ready to face a new year as an awesome individual.
Sometime around Valentine's Day, I caught a bad cold, and one day coughed up some really gross, purple-y stuff.  I didn't think this was a huge deal, for whatever reason, and once the cold cleared up and the coughing stopped, no more purple-y stuff came out, so life moved on.
March rolled around, and man, was I beat.  Just dead tired.  I stumbled through the first half of the month, and when Spring Break came, I actually took three days off from work to just sleep in.  That was unprecedented, but I figured it would help.  Not a bit.
Around March 15th, I looked grey and weak and my skin was like paper.  Also, my blood sugars had been running super-high, even though i wasn't eating anything different.  I thought maybe I got a bad batch of insulin, but even switching vials didn't do anything.  So, I attributed the ruun-down feeling to the high blood sugars and made an appointment with my endocrinologist.  She, unfortunately, couldn't see me for a couple of weeks, which was really annoying.  My primary care was similarly booked, even though I told them that, while it wasn't an emergency, I was feeling pretty bad.  I'm sorry, they said, but the soonest they could give me was the next week. 
Around this time, I paid a visit to my chiropractor (who I figured was about as good a source as anybody for a diagnosis at this point), and after a few tugs and pulls, he says my iron is low. I stop at CVS and buy some over-the-counter iron pills and figure I'll be good as new soon enough.
I was finally able to get in to see my primary care physician, and upon walking in the room and seeing me, he gave me the very helpful diagnosis of "You don't look very good."  To which I replied, "Well, fix me!"  Okay, I didn't, but in my head... Anyway, he took some blood and told me to get some rest and he would get back to me, but it's possible I was anemic (which would have gone along with the chiropractor's theory.  And he didn't even have to poke me with needles.)
That very night, I get a call from the lab people that not only was I anemic, but absurdly anemic.  Like, "How the hell are you still standing?" anemic.  It was so bad that they were sending an ambulance to take me to the emergency room.  I found this really strange and scary, since I had never been in an ambulance before.  When they arrived, they asked me all kinds of questions that i had no answer for, and I had questions that they didn't have any answers for, like, "why is this happening?" They said, "Well, you called us, didn't you?"  No, I most certainly did not.
After hours in the emergency room and several degrading tests on my body, that night began hospital stay #1, about a week's worth of blood transfusions, bone marrow biopsies , chest x-rays and CT scans while they tried to figure out what was wrong with me.  This is where I envision my doctors sitting in a room with a white board being scribbled on by Hugh Laurie, eliminating possibilities and placing bets on my life.  Still, the red blood count went back up, and I was released, since no one knew what the hell was going on anyway.

It was not to last, a few days later, just before my birthday, April Fool's Day, I was back.  Now, they were fairly certain I had Wegener's Vasculitis, a rare one that causes your body to produce way more anti-bodies than it needs to fight off infections that you don't really have.  This causes probs for your kidneys, which race to keep up, and lungs, which is where most infections go.  This time, no more marrow biopsies, thank God, because I thought that was the most painful I had ever experienced, until I got the chest tube put in.  Then, that became the most painful thing I had ever experienced.  And let's throw in one more tiny wrinkle: the bastards punctured my lung while putting the tube in and it collapsed, nearly killing me.  Of course, I had signed a waiver saying that sometimes weird things happen in hospitals, so I can't sue.  Also, my blood sugars were all over the place, to the point where I actually had to spend a day in tensive care so they could monitor me while they got them back to normal.  When they finally straightened all that out, the tube drained my lung and I was again sent home, feeling a little better and on a lot of drugs, most notably 80 mlg of Prednisone, which are steroids that are prescribed for almost anything from poison ivy to, apparently, Wegener's.
I lasted a week this time.  I even went back to work.  I was working a rare Saturday when I got extremely short of breath walking down the hall, and decided to call an ambulance.  Despite being somewhat embarrassed and pissed that I would most likely be admitted again, I think this was the right move.  Of course, I was admitted again, but not before they drained a giant bag of brown liquid from my lung.  This was obviously so insane that the doctor asked if he could take a picture of it.  I didn't care, but why would anyone want a picture of what amounted to brown lung-snot? 
This time, I got the full truckload; a thoracic surgery team, a rheumatologist, an infectious disease team, a nephrology team, a guy from the Joslin Diabetes Center to come over and adjust my insulin every day, and a bevy of nurses and technicians.  With this many people working the case, the damn well better know what's going on.  They finally did.  Knowing that my immune system was being suppressed by the steroids, and my badly infected lung (it basically looked like one of those geode rocks you can buy at the Museum of Science gift shop) would not heal on its own because of that, Dr. House came up with a revolutionary technique to use two chest tubes, one for in and one for out, and inject saline into my lung while I jostle around in my bed to shake up the lung gunk that wouldn't come out on its own.  This happened every six hours for a few days, and let me tell you, if you haven't felt the inside of your lung fill up with cold saline solution so much that you can actually taste it, you just haven't lived.
Still, the technique worked.  Basically, we were artifically doing what the body usually does naturally, when that body has a working immune system.  Actually kind of cool when you think of it.  So cool that i think I ended up in some medical journal somewhere, although probably as Patient X or something.  And so, on June 1st, I was released again.  This time, I had a visiting nurse coming every day, and was infusing myself with anti-biotics daily, and was told how to stave off infection (which they never actually said anything about before when they would let me go home.)  This was definitely scary, because I was very afraid I'd just get sent back yet again, but the visiting nurse, Cathy, was awesome, and she told me that I was much better off at home takig care of myself than at the germ-ridden hospital.  Apparently, she was right. 
In a couple days, it will be September 1st, and I have not been back.  I am working, riding my bike, the prednisone is down to 15, and I can walk down the hall without calling an ambulance.  All the tubes and needles are gone.  Cathy is, sadly, gone.  My appointments are farther apart.  The surgeries that I was supposed to have ended up being unnecessary.  I am starting to feel "normal" again.
What have we learned, besides that life can be like an episode of "House" sometimes?  That perseverance pays off?  That there are caring, nice people in the medical field, and tehre are dopes who will pierce your lung if they're not careful?
I don't know, man, but I will offer this piece of advice; if you start coughing up purple stuff, go immediately to your chiropractor.   

Friday, August 19, 2011

Judgment Day is Upon Me

Let me try to put this delicately.  On second thought...
This friend of mine is seeing this dude (or screwing, or whatever the Hell they are doing.)  She was at his apartment, and was kind of surprised to see that he had DVR'd the latest episode of Jersey Shore, and was very adamant about watching it ASAP.  I think part of the story is that he was a little high at the time, but he still DVR'd it.  Now, I've never met this dude, but when I heard this, I laughed at him, from a great distance, but I bet he heard me.  I laughed because I know no straight man who has ever watched, let alone records, Jersey Shore.
For the uninitiated, Wikipedia describes the show thusly: "The series follows the lives of eight housemates spending their summer in a summer share in Seaside Heights, New Jersey."  Of course, they spent a season in Miami, and apparently there will be a season in Italy.  Perhaps it will be in Jersey, Italy.  Nevertheless, it is the most popular show in the long history of MTV, surpassing Real World/Road Rules and even that one about the fat teenagers.  And yet, I know no one who actually watches it, mostly because I don't know any pre-teen girls.  I also don't know this dude, but apparently he watches it, too.
Part Two of this story is more personal.  Not long after my giggling, Jersey Shore revelation, my friend witnessed me watching (via Netflix Streaming) the X-Men animated series from the early-90's.  I had remembered liking this series during its hey-day, so I wanted to see if it still held up (and I honestly didn't watch a lot of its 5-year run).  It really doesn't hold up at all, but then, I am thirty-five.  I just don't really get what they were going for.  It was filled to the gills goofy lines and general silliness, but they killed off Morph in the first episode, I guess to illustrate that it was a "serious:" show.  Probably as serious as Jersey Shore, anyway.
Which brings me to the point of this whole rigamarole.  As she watched me relive my youth, my friend shook her head and said, "And you judged someone for watching Jersey Shore."  I defended myself by saying that it was pure nostalgia, and she made a slight retraction by pointing out that she knew what show I was watching after seeing just a few seconds, because she watched it back then, too.  Still, I was vexed.
I did judge that man for being a 30-something year-old who recorded Jersey Shore, and yet I was streaming a cartoon (and eating a grilled cheese while I watched it).  In fact, I watch a lot of cartoons, and eat a lot of grilled cheeses.  And I read comics and have a collection of Jokers.  If someone were to laugh at me, I would probably feel wronged and laugh back at whatever silly thing they do ("You drive a car in the city?  What a simp!")  The big question?  Is one worse than the other?  And who am I to judge, having consumed hours and hours of crap television in my lifetime?  It's true!  While I was dating my girlfriend, I used to watch General Hospital with her, and to be honest, Luke Spencer was totally my hero.  I mean, he used to go on actual adventures like some kind of modern-day Indiana Jones.  How could you not think that was cool?  But I digress...
I don't know even what the point is.  Maybe that we all have our "things."  Granted, I haven't watched X-Men since that day (mostly because I thought it was a bad show, not because I was embarrassed.), and I've never watched Jersey Shore.  But if I was a little younger, or dating someone who watched it, would I be a fan?  Well, no, because there's watching a show, and watching a show.  I'll watch re-runs of The Simpsons, but I watch Mad Men.  Maybe it's always weird when someone outside the core demographic watches anything.  Maybe it's because I remember MTV before it was so terrible.  Maybe this dude just gets a kick out of that "Guido" shit, and maybe I'm just a little too young at heart.  Maybe there's just too much damn TV in the first place.  I don't know the answer, but I do know that I did laugh at that guy, and yes, I know that saying about glass houses.  Honestly, I still find it funny that a grown man would DVR a show geared towards teenage girls.  So I guess I haven't learned my lesson.  What's the opposite of "Judge not lest ye be judged."?
Honestly, I feel there should be rules here.  Maybe we're not judged enough in today's society.  I mean, I'm not saying we should all be racist bigots, but I feel like when I was younger I got made fun of for just about everything I did.  True, liking any show is pretty harmless, but usually, when you give people an inch, they'll take a yard.  Maybe I've been to too many comic conventions and seen too many people dressed up as Chewbacca in public to make an accurate assessment, but we may be creating a generation of weirdos.  I know people who go to a yearly "writer's convention," only the writing they are referring to is actually slash fiction.  I think the next one will be called Orgy-Con 2012, and yet I can't even watch X-Men in my own house.  There's a problem here.  Should we just be allowed to do whatever we want?
I guess as long as we're not hurting each, right?  But when that day comes, will it be too late?

Friday, August 12, 2011

The Lighter Side

I've been writing about some serious stuff lately (well, maybe not Captain America, but lung gunk and whatnot.), so I thought I'd change it up a bit and give a little of the humorous side of a long hospital stay.  I'm going to tell you about my roommates.  Be warned, however, when it comes to hospitals, you leave your dignity at the door, so some of this may be rather low-brow.  Gotta be done.  Don't worry.  I won't use any names.  Well, maybe one.

Upon arrival, my room was occupied by an older, Hungarian man who apparently spoke very little English.  His daughter was able to translate for the doctors, but she didn't come by very often, so when they would do their rounds in the morning and ask how he was feeling, they did what most people do when someone doesn't understand what they are saying: they said it louder.  I realize it is a normal human reaction, but the guy wasn't deaf, he was Hungarian.  He didn't speak English.  He's not going to get it any easier if you say, "ARE YOU IN ANY PAIN?" as opposed to "Are you in any pain?". As a result, I knew everything that was up with this guy because they shouted at him every test and procedure he was going to have.  
 The best part came when they were going to take him for a X-ray, and he was... in disposed.  And he refused to get off the toilet to be taken for his X-ray.  They waited a little while, but the guy just wouldn't budge.  In a minor panic, the nurse used her personal cell phone to call the guy's daughter to explain to him that he had to get up and go.  She then had to hand the guy her personal cell-phone through the slightly open bathroom door so he could talk to his daughter.  Of course, he had not washed his hands before handling her phone.  I met a lot of nice, helpful and good people at the Beth Israel, but this girl was clearly an idiot.

When they thought I might have had pneumonia, they shipped him to another room and I had a day where I was all alone.  So, I lived it up, going so far as turning down the oppressive heat to cool the damn place off a bit.  All the nurses and techs who came in said they loved it because it was so cool in there.  We had a ball.

Then they brought in Money.

"Money" Johnson was brought in late on a Saturday night, and he had clearly been enjoying himself.  I liked keeping the curtain closed, so I didn't see what was going on, but based on what I heard, it seemed that Money had passed out in his home, and someone I believed to be a landlord or a neighbor with a key to his place brought him to the hospital.  I then heard them say good-bye to him and rush out of there like Scooby-doo running from a thief.  The nurse then brought Money a bucket for him to puke in, which he used extensively (and loudly) for the next several minutes.  He proceeded to yell over and over that he was cold and he needed a blanket, and another nurse turned the heat back up, so I went back to sweating my brains out in there.  Damn you, Money!

As the days went on, I alternated between feeling sorry for Money and being angry at him.  For one, I was able to deduce that this was not his first trip to the hospital, and heard several doctors ask him if he had ingested rubbing alcohol or nail polish remover, because they found some in his system.  He claimed a friend had given him a shot of vodka that "tasted kinda funny."  Of course, no one believed this, because as Dr. House says, "People lie."  Clearly, Money was (and is) an alcoholic, and rubbing alcohol was all he had handy that night.  He also claimed that he must have had a stroke while walking out of his apartment and someone found him in the hall, but the doctors informed him he was brought in by someone who said they found him in his apartment, probably in a pile of puke.  But that's conjecture.  So, in general, I don't feel a lot of sympathy for people who take up hospital beds because they can't lay off the rubbing alcohol.  I know it's a disease like anything else, but he was obviously a repeat offender and I just don't feel bad for people who seem intent on destroying themselves.  And how the hell do you drink rubbing alcohol anyway?

On the other hand, Money never received one visitor the entire time he was there.  He talked on the phone a little bit and watched some TV, but even the nurses and doctors seemed to pay him little mind.  And he never talked about missing work, so I'm not sure he had a job.  After a few days, they shipped him off to some rehab facility.  He's probably back on the street now, possibly still drinking funny-tasting vodka.  In that respect, I do feel slightly bad for him.  He seemed alone in this world, except for the bad friend who gave him the "vodka," and he seemed like the type of guy who could use a friend once in awhile.

From then on, I was mostly put in rooms where I was alone, which was really the way to go.  During my last stay, however, I saw the most roommates, most of them for only a day or two.  One guy had obviously had some sort of gastro-intestinal issue, because when the doctors asked him if he had, y'know, "had a movement," he said "No, but a lit a few good farts while I was in there."  The best part was, like any good comedian, he used that joke on a few different people, and it always got a reaction.  Unfortunately for me, I knew that he wasn't just coming up with it on the spot.  He was doing material.

The next roommate was a young man, who obviously came from wealth.  I know it's weird to say just based on over-hearing his conversation, but the fact that his parents visited and told him he could take the rest of the summer off and use their vacation home the whole time was a pretty good indication.  The curious thing about this kid was that he came in on a Friday, and by Saturday night had made enough of a stink to where the doctors allowed him to go home.  Mind you, this was his decision, and he came to it about 9:00 on Saturday night, so no pharmacy was open to get his prescription filled.  His parents, used to getting their way, asked the hospital to fill it, which they do not do.  Their policy is not to let folks walk out with drugs.  But the kid decided to grin and bear it and leave and get his script filled at the first opportunity because, as he put it, he "couldn't take another meal in this place."  I suppose I don't blame him entirely, but... Screw you, you whiney little bitch.  Have some sympathy for the folks who weren't given the choice.  yeah, no one likes to be in the hospital, but some of us have to be and we don't get access to Mom and dad's summer home when we get out.
   
They then brought in the coup de grace, Lee from Lawrence.  Lee apparently also had a gastro problem, although his seemed to stem from an earlier gastric-bypass surgery and a rather poor diet.  Lee was a talker, and had no problem telling me that he used to weigh 600 pounds, and was now down to a svelte 300.  Seems like Lee drank a lot, too, but was now having trouble keeping anything down.  So, while the doctors tried to figure out exactly what was wrong with him (besides the obvious), he was restricted to ice chips.  Lee begged and pleaded with the nurses, then yelled at them, then apologized, then yelled and apologized again, but to no avail.  Only ice chips.  He did seem to be placated by  afternoon soaps, which he claimed to only watch because of his girlfriend ("Girlfriend?" I thought. "He has a girlfriend?")  He was also very anxious to be in his bed and undisturbed by 9:00 on Monday to watch wrestling, only to then tell the nurses that he wasn't that into it and he just watched it because it was something he used to watch as a kid and he got a kick out of it.  Whatever, dude.  If it was just some show you watched, why are you spazzing out over missing it?  He even called this supposed girlfriend during the show so they could talk about it together.  He talked on the phone a lot, in fact.  Using the hospital phone.  The one that they charge about $95,000 a minute to use.  He's probably still there washing dishes to pay off his phone bill.

The oddest thing about this guy, though, was his apparent vanity.  Remember, he was 300 pounds of flesh that used to be 600, so he didn't exactly look like one of those professional wrestlers he was watching.  And yet, every morning he could not see or talk to anybody before brushing his teeth and taking a shower.  I guess that's good, but he never left that room all day, and no one ever came to visit him except the nurse who brought the ice chips.  Just who was he trying to impress exactly?  I mean, I guess there's personal pride, but at that point, just get better and get out of there was my goal.  Who cares if your hair isn't washed every day?  Yes, I did brush my teeth after meals and washed up in the morning, but it wasn't an obsession.  Maybe it was something his mom told him during one of their marathon, million-dollar phone sessions.

After a few days, I was discharged and left Lee there.  He was the only one I left behind, after going through seven (count 'em) roommates, plus a few stints where I had no roommate.  In retrospect, they served their purpose in my life, because as bad as I felt at times, some of these people were doing much worse.  And I'm not telling these stories to put them down or make fun of anyone, because these people were all suffering.  I'm really trying to give a little perspective.  In the end, we are all lucky in some way.  Even if it's to not be Money.

Monday, August 08, 2011

Back to reality

So, I'm back at work these days.  Even rode my bike to get here this morning (and there's a hill on St. Paul St. that's a real pisser for a guy with recovering lung, but i made it).  Oddly, for a guy who missed so much work, I have precious little to do here, but that's mostly due to construction around the building, not me being incapable of doing any work.  People here have told me that I'm looking better (one co-worker said that I looked "gray" back in March before everything hit the fan.  Yikes.)  I did push-ups today.  Not a lot of them, but enough to make me feel good.  Plus, the steroid side effects are slowly going away (acne in weird places, sleeplessness, getting ridiculously bloated).  I am now attempting to work off the gut I developed sitting around and eating for the last few months.  This is something I have never done in my life, so we'll see how that goes.  I suppose a couple weeks off the pizza and hot dogs is probably in order.  Crap.

Anywho, that's the physical stuff.  Nothing short of miraculous, eh?  Okay, I'm not bitter.  But when people say how crazy it was that all this stuff happened to me, I can only reply, "Yeah, it sucked."  No other way to describe it, really.  But I'm back.  I can take normal showers again.  I am riding my bike (thanks to my awesome friend Hides, who donated hers to the cause).  I have had a few beers.  I'm worried about my hair and money.  If I go on a bad date here and there, everything will pretty much be exactly as it was before all this.  Well, okay, I'll try to avoid the bad dates.

I guess I have a slightly different outlook on things, probably besides washing my hands more often.  It's inevitable.  Weeks spent virtually alone with nothing to do but think and watch fluids come out of your lung will do that to a guy.  In the end, I'm not sure I want a whole new outlook on life, though.  Maybe it's there, but I'm certainly not going to get all preachy about it like some character from Rent.  It happened, and like I tell people, it sucked, but other than "Go to the doctor if you're sick," I don't have a lot of sage wisdom to offer.    Oh, and if you do have to be hospitalized, and they offer pain medication, take it!  Don't be uncomfortable, for Christ's sake.  Those are the two most important things I can take away from this.

I wish I could say I came away from this having found Nirvana or something, but let's face it, I'm pretty much just glad I came out of it at all.  I do have a slightly better understanding of what's important (basically, health), so I probably will have a few less things to complain about for awhile.  But soon enough, I'm sure I'll go back to complaining about everything.  I'm sure I'll be the same son-of-a-bitch I always was.  Hopefully, that's good enough for everybody.

Tuesday, August 02, 2011

Without a Net

Today, I had my last scheduled appointment at Beth Israel for three months.  I was told my chest X-Ray looked great, the incision site has healed, and I could even go swimming if I wanted (and yeah, I want to.)  They actually used the technical term "Wow" when they saw how well I had healed up.  Doctors, eh?
So, that is that, for awhile.  I mean, I still have appointments with my rheumatologist to control the steroids, but that's just a regular office visit, not a whole hospital thing.  I won't have to see a surgeon.  This is obviously good news.  However, I would be lying if i said i wasn't a little nervous.  For one, I was specifically told not to cover the site where the chest tube was, which is no longer a gaping wound, but still, I know it was there.  Also, with no appointments and no visiting nurse, I'm pretty much on my own.  I have to determine if I'm sick or have some kind of infection (which is still a danger.)  Considering how long I let the agony go at the start of this whole thing, that could be very dangerous.  Hopefully, I'll be smarter should anything like that happen. (So, people, please tell me if I look like shit.)
As I ease back into a normal life now, because I guess I have to, I am forced to look back and wonder how I spent all this recovery time.  Basically, I spent a lot of time on the internets, accomplishing not very much.  I mean, I wasn't trying to change the world, just get through the days, but I suppose I could have worked a little harder at making use of my time.  Unfortunately, that's just where my life is at right now.  Honestly, I spent most of my time online when I wasn't recovering from a severe infection.  Now here we are, one month of summer left, and I think I'm going to try and accomplish something that doesn't have anything to do with the internet.  I have no idea what, but I'll know it when I see it.  And it will be cool, and make me feel good, and when it's over, I'll write all about it right here on my blog.
Oh, come on.  I didn;t say I was giving up.

Friday, July 22, 2011

The Long Haul

Today I saw Captain America, marking the end of the 2011 Geek Trifecta of Marvel movies that I have seen on opening day with my friend John, the others being Thor and X-Men: First Class.  I wish I could say that Cap was the best one, because I have always liked the character, but it was actually the one I enjoyed the least of the three.  The writing was pretty bland and it seemed really long at the beginning and rushed at the end.  But, on a different level, I enjoyed this movie-going experience the most out of the three.

The day we saw Thor, back in May, I was fresh out of the hospital and eager to get back to normal life.  John was picking me up at the train station and we would drive to the theater from there.  Thankfully, I was a few minutes early, because after exiting the train with an unbelievably scratchy throat, I went into the men's room and coughed my brains out, (sorry if this will be gross) spewing up gobs of brown liquid.  Now, this should have been cause for concern, of course, but since my doctors had told me to specifically be alarmed for coughing up blood and not chocolate milk, I figured it was part of the recovery process.  In fact, I was fine throughout the whole movie, got on the train, rode home, and had another couple coughing fits before going to bed.  Of course, I was back in the hospital a few days later with a very serious infection that the doctors now tell me should have pretty much killed me, or at the very least hindered me from going to the movies.

Fast forward to June, and opening day of X-Men: First Class.  Once again newly released from the hospital, this time a bit wiser.  Keep away from germs as much as possible and stay out of large crowds.  I am walking around with a chest tube that drains fluid from my lung, and I have a PICC line in my arm that I use to infuse myself with daily antibiotics.  Still, the plan for me and John is the same, so I risk my health because the movie looks really cool.  I have a couple different hand-sanitizers with me, and we end up seeing a very early showing, so the "large crowd" problem ceases to be a problem.  The movie definitely lives up to the promise, though.  It totally rocked.  However, riding the train home during rush hour, with a Red Sox game that evening, did not rock at all.  I was scared as hell being stuck on that germ hotel for all that time.  When I finally got off on my stop I ripped open my handy wipes and practically bathed in their alcohol-y goodness.  I was sure that my immuno-suppressed body had been infected with thousands of horrible things just from being inside the train all that time (Obviously, I did my level-best not to touch anything, but even pre-steroid Dursin did that.)  Remarkably, I was able to stave off any infection and stay out of the hospital.  And, of course, the movie was awesome, so everything was coming up Milhouse.  Still, that was the train ride from Hell.

Today, almost fully recovered,  months removed from my initial hospital stay back in March, was Captain America Day.  It's almost like I was celebrating my Independence Day, so it worked out that Thor wasn't opening today.  No more chest tube.  No more antibiotic infusions.  No coughing up chocolate milk.  I am still on steroids (although a much lower dose) and still carry hand-sanitizer (but only one tiny bottle), but I am not afraid of riding the train, and not nearly afraid as I should have been the previous two times, probably.  So that was this afternoon, and so far, no ill effects, other than the movie itself wasn't as awesome as the previous two.  Small price to pay, I guess.  Sometimes, it's the journey that counts most, and getting to this day means way more than the movie itself.

The next geek movie?  I probably won't even have to write about it, because hopefully by then, going to the movies won't be a journey at all.  And hopefully it will be as cool as X-Men.   I'm talking to you, Dark Knight Rises.

Monday, July 11, 2011

Kobayashi Maru

Tomorrow (well, in a matter of hours, really), I am having my bronchoscopy-with-a-side-of-lung-plug procedure.  If that makes no sense, it means that a doctor is going to insert devices and things down my throat and seal the hole in my lung, which I was told is about 90% healed anyway.  I don't know exactly how this is done, but I know that I will be under a lot of anesthesia for it, will not not have to be cut open, and will probably be consuming vast amounts of pizza when it is over.  Or perhaps U-burger.
This should be the culmination of a long, healing process that started back in March.  Maybe in the grand scheme, March to July isn't that long, but living each day for these three months the way I have been (4 hospital stays, a lung wash, an iron infusion, infusing myself with daily antibiotics in my arm for a month, draining a chest tube, visiting nurses, etc.), it seems like an eternity.  But I feel like this is the climax.  Or at least it better be.  Obviously, there will still be steroids and other meds and another recovery period, but this really should be a turning point in this whole struggle, and I can finally begin looking forward, and liking what I'm seeing.  A normal life never looked so good.
A lot of people have said that I am handling all this well.  I'm never sure how to answer them.  It's obviously a compliment, but I also think that a lot of these people who say that didn't see me in the hospital, being grumpy at all the doctors.  Or maybe grumpiness is allowed under the circumstances.  I don't know.  I haven't had time to worry about how well I'm handling it, because I'm too busy actually handling it.  And I'll be honest; it sucked.  Sorry to be so brutally honest.  It was Hell, and I wouldn't wish it on anyone and if it built up a little character and made me realize that there are a lot of good people in the world, that's great, but I'd certainly trade it in for not having to go through it all again.  Kind of a no-win scenario.
So, as I reach this turning point, thanks again to everyone who kept me in their thoughts and prayers.  I certainly couldn't have handled it so well without that encouragement.  And if you're reading this and don't know if you're one of those people, it probably means you're near the top of the list because decent, unselfish people always do that.  That's what makes them who they are.  But as far as beating the Kobayashi Maru scenario, and the whole Captain Kirk, "How we deal with death is at least as important as how we deal with life" thing, I can only say this: I handled it by handling it.  I just did what I was supposed to do when I was supposed to do it.  Yeah, it wasn't fun, ever.  But the only way out was up.  So, up I went.
Oh, and I watched a lot of Netflix.  So, that's my other recommendation.

Tuesday, June 28, 2011

Status Update

If there's a person out there still interested in my maladies (I know I'm certainly not one of them), here's the latest:

It appears at the moment that I will not need the invasive surgery that just last week I thought was inevitable.  The idea was that my lung wasn't healing as quickly as they hoped, and that the surgeons would have to take a chunk of stomach fat and pack the hole in the lung with it.  That would have required another week-long hospital stay, 2-3 months of recovery, and probably ruined my summer!
As of today, I may be able to save August (to quote the great Chief Brody).  They are going to go through my throat and install a little valve-type device and try to plug the leak that way.  And that is being done on an out-patient basis, July 11th.  Also, I got the call today to stop taking my IV antibiotic (which is actually on schedule) because it may have been causing my white blood cell count to drop.  So, I also get to stop taking the vile-tasting antibiotic I was taking.  This, of course, does leave me at a slightly higher risk for infection, but the steroid dose is much lower than it was back a couple months ago when I got the severe infection that landed me in the hospital with brown ooze coming out of my lung, so that should help.  Otherwise, I just have to keep washing my hands, I guess.
I also still have the chest tube in, and my job now to to be mindful of that.  If the stuff coming out starts getting cloudy, I have to let my doctors know, because it probably means infection.  That is at least a good fall-back.  Last time, I had to wait until I could barely move before I went back.  Now, I just have to look to the tube.  Still, I have faith this time that I can remain relatively healthy.  If not, well, I'm screwed.
I've mentioned how supportive and helpful virtually everyone I know has been (and continues to be), and it's still amazing how much it helps me out (You have no idea).  Hopefully, the end is in sight here, and we can all go back to the way things were before.  I can be bitter and alone, and you can all feel bad about that, instead.  I know that day is coming.  You know why?  Because now I have real help.

Saturday, June 04, 2011

Update - It's What Time?

I used to think I could sleep through anything.  I used to think I had a touch of narcolepsy, even.  I've gone to see a movie and literally slept through the entire thing.  I slept through a whole half-semester of The Brain & Human Communication.
Now, I'm on a very high dose of steroids, and it is 6:00 on a Saturday morning, and I am wide awake.  I have nowhere to go and nothing to do today, but I am wide awake.  And have been since 2:00 a.m.  The steroids just make the mind race and you just do not fall asleep.  The bright side is I saw X-Men: First Class yesterday and didn't fall asleep.  Bad-ass movie by the way.
So, anyway, I'm home now.  Got home Wednesday, June 1st, two months after my birthday, which I was also hospitalized for.  So, it's been a long road, and it seemingly is getting longer.  Right now, I have a tiny plastic bottle attached to my side that collects what fluid remains in my lungs from the infection, which I have to empty out every day.  I have an IV line in my arm that I have to infuse with an antibiotic every day for a month.  Myself.  A nurse is scheduled to come to my apartment every day for as long as I need it to change the dressing on my side (which, BTW, steroids tend to retard the healing process), and one who comes every few days to change the dressing on the arm.  And I have billions and billions of follow-up appointments with various doctors.
So, that's the physical update.  Mentally, I am extremely anxious and am so afraid of catching another infection that I am a half-step away from Jack Nicholson in As Good As It Gets.  I wash my hands constantly, but never feel like it's enough.  Maybe it's because I can't get a decent shower with all these dressings (Seriously, I will never take a shower for granted again), and I know the steroids are doing their part, too, but whatever the reason, I am doing my best to not go back to that hospital, but it's driving me a bit nutters.
I think part of the problem is that I have a need to live my life, but I also need to take things easy and let my body heal.  I know in my mind it will heal, and I have been told that, in a few months, after the steroids have been tapered off to the point of almost nothing, I will have kicked this.  I know all that.  But getting there is not half the fun.
There we are, then.  I am trying to take it slow and steady and all that, and I guess I am doing okay.  Hopefully, I can keep doing okay with very little sleep, crummy showers and high anxiety.  I know I sound like I'm complaining a lot here, so let me close with this; I can.  I can do okay.  Maybe not awesome.  Maybe not amazing.  But I can manage okay. 
And maybe, each day will get a little more okay.
And maybe, one day, I will even sleep.
It's the little things. 

Monday, May 30, 2011

Update - Time Goes Bye

Two weeks is a long time.
This is by far my longest hospital stay of the four I've had since the end of March.  Tomorrow, May 31st, will mark two weeks.  I've been through four roommates, daily chest X-rays, CT scans, and countless chest tube boxes, and no doubt thousands of dollars.
The physical update is that things are looking much better, and the second surgery that they feared was absolutely necessary a week ago has been indefinitely postponed.  They have decided to stop flushing the lung every six hours to see how I handle that.  My kidneys have shown vast improvement, and my blood sugars are back on track.  So, we're continuing to watch the lung and the infection.  Hopefully, I will be sent home in a couple days, most probably with a chest tube and possibly a penicillin pump and a visiting nurse.
But it beats this.
I have written a lot in the past about the passage of time.  But it usually had to do with how old I felt I was getting.  This is a little different.  I have not left this hospital (Hell, barely this room) in two weeks.  It's humbling to say the least.  I have come to grips with the fact that I will not wake up tomorrow and it be miraculously cured and have this never have happened.  But that is just the way it goes.
Mostly, I am learning that there are only so many ways to pass the time.  Books, internet, Netflix streaming.  The Red Sox recent hot streak.  All great boons for sure.  I'd go insane without them.  But in the end, it is just me and my thoughts.  Honestly?  The small talk with the guys who bring me to my chest X-rays has gotten old.  The hospital menu?  Old.  Any sort of hospital humor?  Old.  This is not me being bitter, either.  This is the reality we live in.  The Royal Wedding was a big deal, and that got old, too.  Things get old and people move on.  Except when they can't actually go anywhere or do anything.
I've heard from a lot of people how great a job I am doing dealing with this.  I never really know how to respond, because I don't think I'm doing anything extraordinary.  This is reality, and this is what you do when it kicks you in the teeth.  What was my alternative?  Off the deep end?  Suicide?  Clearly, This is a new storyline on the Matt Dursin Show, and this is how it is being written.  But as far as what goes on between the scenes, well, that is the part I'm having the most trouble dealing with.  

Sunday, May 22, 2011

Big Health Update - Surgery Tomorrow

Well, I guess this was always in the cards eventually, but tomorrow I am having my first surgery.  As far as I can tell, it's not too invasive, other than the fact that all surgery is kind of invasive, but they don't plan to cut into any major organs at this point.  Apparently, the plan is to make 4 small incisions in my chest, one for a video camera, and three for some tubes.  The tubes will be to essentially "wash" the chest wall and area around the lung with saline and then suck it out, along with any infected material, and also to get a look at any damage that this infection may have caused.  Sounds easy, right?
Well, there is obviously some concern over my suppressed immune system from the steroids I've been on, which they have reduced but is still a pretty high dose.  There is a window where the rituxan I received a few weeks ago starts kicking in, so the hope is to do this surgery and get some healing in before that gets going.  Bottom line, the main worry is the healing after the surgery; whether the lung will heal itself, how bad it actually looks, and they also suspect there is a hole somewhere between my windpipe and the chest wall.  Not really even sure what that means, but it's all about the healing.
So, tomorrow I'll some out with more tubes than I went in, and hopefully they will do the job.  I'm sure everything will come out fine.  I mean, they wouldn't do the surgery if it was too risky.  I'm not sure doctors are in the business of gambling with lives, but I who knows?  I know I probably won't feel so great afterwards, but I do plan on ordering pizza for whenever my next meal is, so that's at least something to look forward to.  Other than that, it's in the hands of the professionals... and fate. 

Thursday, May 12, 2011

Get Better, Will Ya?

I'm going to try to not sound all "Woe is me" on this one.  Stick with me.  By the end, it should make sense.
The problem I am having, mentally as well as physically, is the lack of  improvement in my general health.  Obviously, there is no quick-fix, and I have been told that I will be on all of these medications for months, and lower doses for possibly years.  Still, I had hoped to see some kind of uptick by this point.  In fact, stairs still give me trouble, the chest tube hole is still leaking, my suppressed immune system has given me a slight cough, which doesn't help the lung that had the tube in it, and I am still very anemic (Yesterday, I received an injection of iron in my blood which was supposed to help with that, but it really just gave me a metallic taste in my mouth.  And freaked me out a bit because it was black.)  I have appointments the next few weeks with various specialists (lung, kidney, blood, and whatever the Hell a rheumatologist specializes in), and they all seem to have their own ideas on how treatments should proceed.  I feel kind of like that episode of Curb Your Enthusiasm where Larry is trying to decide to trust the doctor or the pharmacist.
That's the physical part of it.  Mentally, the challenge is trying to get back to something resembling normalcy.  Part of me (the brain) knows it will take time, and this is a bump in the road.  The other part (like the little devil that sits on the shoulder of Tom before he hatches his Jerry-snatching scheme in the old cartoons) says, "You're 35 now.  This disease struck you when you were in the best shape of your life, and it had taken all your energy to get there.  Pack it in, lard-ass.  You'll never have that strength again.  Kiss the hundreds of sit-ups and push-ups good-bye."
***I should note that the high dose of steroids I'm on makes me kind of bloated, and kind of hungry.  So while I suppose I'm not a "lard-ass," in the conventional sense, I do weigh more than I have ever weighed in my life.  And come on, this is my complaint here.***
One of the problems I have encountered is that some people don't "see" the problem.  Specifically my Dad, who keeps telling me that I should go back to work, and that I can't "milk it forever." And, bless him because he means well, but my brother too, who gave a slight chuckle when he asked how I was doing and I answered that there was no real improvement.  Maybe it was my delivery.  It's not their fault, really.  They see that I am up-and-about and hear my voice and figure that this guy is doing okay.  The fact that no one has ever heard of Wegener's before seems to be the stumbling block.  If I had cancer, they would probably react differently, despite the fact that they are very similar diseases as far as I can tell, and I was actually given a chemotherapy drug to treat the Wegener's.  Not saying I wish I had cancer obviously, it's just interesting to note people's reactions.  The fact that my own father, who saw me in the hospital every day for the over three weeks I was there (all told) would suggest I was milking this is a bit hard to handle.
But then there is also the rest of the world.  Pretty much everyone at work, close friends, even facebook friends whom I rarely see in "real" life have all wished me well, or simply asked how I am, or told me to just get better, fight thins thing, and not worry about the other stuff like getting back to work or not being a lard-ass (Okay, that was me.  No one else actually believes me to be a lard-ass.)  I posted a picture of my iron IV yesterday while I was waiting, and almost instantly had responses from my online support group.  A lot of them Iron Man jokes, but still, they cared.

Obviously, my dad cares, too, but these are the folks that really help me through.  Just the simple, "How are you's" and "Hope you're feeling better's" make it that much easier to carry on.  And the cards and emails and texts and messages and all the other billions of ways to communicate these days have really overwhelmed me.  I've kind of criticized the whole social networking thing and the misuse of the term "friends" in the past thanks to facebook and things like that, but I may have been being a bit too hasty in my judgment (I know.  Me?)  You are my friends, anyone who sent me a card or a message or thought of me or asked how I was or hoped I got better, anyone out there in the world who sent any kind of positive vibe, regardless of how I know you, you have contributed to my feeling better in no small way, and for that, I thank you.
Now let's get these "specialists" to do their job, and we'll really be rolling.

Wednesday, May 04, 2011

Health Update - "Roid-Weird"

Enough people read and expressed interest in the last blog post that I figured I'd give a new update.  Because a lot happened after I wrote that last one.  For one, I had to go back to the hospital for another 8-day stay.  This time, I was experiencing shortness of breath because there was fluid around my lung and it couldn't expand and I was basically suffocating.  So, I called an ambulance and was brought back in.  After more tests, including a CT scan that is still affecting my kidneys because of the dye they inject, and probably a record number of chest x-rays, it was determined that it wasn't an infection and the fluid was caused by the Wegener's.  At least they didn't collapse it this time.

They did, however, insert another chest tube (even more painful than the first one) and drain about 3 liters of fluid from in and around my lung.  That's a lot of crap to be in there.

The good news first is that I have finished my treatments of rituxan (the chemo-drug that is supposed to prevent remission) for at least six months.  Unfortunately, since they haven't been using this treatment for Wegener's that long, the doctors really aren't sure of what any long-term effects may be.  Still, they have said that you don't start seeing results until you finish the treatments, so hopefully now we will see something.  The other piece of good news is that my lung appears "stable," which at least isn't worse, as my doctor originally thought when looking at my latest chest x-ray (He didn't have access to the hospital ones.  Don't you love the way this system works?)  There are still some pockets of fluid around my lung that my body is supposed to handle, but it will take some time, and that still makes me a little short of breath when walking up stairs or any real distance.  It's definitely something we're keeping an eye on.

The rest of the news is that I am still very anemic, which also leads to being rather weak.  My blood cell count is very close to the level where they would like to schedule a transfusion, which I will consider if they do not go up (I have to go in for more and more bloodwork to see if there is any change.)  However, there is also concern that I am bleeding *somewhere*, so a transfusion might only temporarily solve the problem.  Because we don't know why the blood count continues to be low, they also want me to schedule a colonoscopy to see if I am bleeding in my intestine, which I am certainly not looking forward to.

Beyond all that, I am still on a very high dose of steroids, which does all kinds of crazy things to me (I've started calling it "roid-weird."  Like roid-rage, but different), and my kidneys are still being affected.  And there is some concern over how the hole from the chest tube is healing (or not healing).  So, the bottom line is I still have a long way to go here.  A lot of uncertainty.  Hopefully, it will all come together as we go along, and hopefully the tapering off of the steroids will be the first step.  At this point, I'm still lounging around the apartment, looking bloated and going to a seemingly endless line of doctor's appointments.  I guess it could be worse, though.  At least I am home, hopefully for awhile this time. 

Thursday, April 14, 2011

What's Going On?

I've been meaning to do this for awhile now, but never seemed to have the time or inclination.  It's ironic that I finally have something worth blogging about, and I didn't feel like doing because of what I had to blog about.  Or does that just suck?

So, at this moment I am in a clinic at Harvard Vanguard, receiving my second infusion of a chemo-drug called rituxan, or rituxan-ab.  Fear not, I have not been diagnosed with cancer, but Wegener's disease, or Wegener's vasculitis, or Wegener's granulomatosis, a rare one that impacts the lungs and kidneys.  Basically, it's an auto-immune disease which causes inflammation of the blood vessels and where your body create anti-bodies that fight you.  It's very complex, but I think that's the gist of it.
How this all came to light is a whole story, as it usually is.  But I've got about three hours, so here goes:
On Valentine's Day, I remember distinctly feeling run down and had a bad cold, and remember coughing up some purple stuff.  It was slightly alarming,  but figured it was part of the cold and it didn't persist, so I bought some Thera-flu and moved on.
As the days and weeks went by, I started feeling really run down.  Thinking it was due to the bad winter and being sick and generally feeling depressed, I still pressed on.  I don't mean to brag, but I have a pretty high threshold for pain and have always subscribed to the "Walk it off" theory driven into me by my dad.  And it's amazing what you can put up with and just keep telling yourself, "Man, I'm tired."  Being at the doorstep of 35 probably didn't help matters.
Eventually, I felt like the walking dead,  but Spring Break was coming so I figured I could take a couple days off from work and recharge my batteries.  Well, Spring Break and my days off came and went, and I still felt terrible.  But I was determined to walk it off.  Still, I knew something wasn't right so I did what anyone would do in my situation; I asked my chiropractor what was wrong.  Naturally, right?  Coughing up blood?  Feeling like crap?  Ask the chiropractor.  (In his defense, he is one of the smartest people I know)  His diagnosis from me trying to push my legs against his hands?  Take some iron. 
Now here comes the part where you can decide whether fate was involved or just the way things happen. I've been diabetic for 16 years and obviously had my share of ups and downs, but my blood sugars were as high as I had ever seen them and nothing I did could really bring them under control.   Eventually, I made an appointment with my doctor.  Sadly, despite the fact that I told his receptionist I was really hurting, it was another week before I could get an appointment.
I saw the doctor and he couldn't immediately figure it out, but as soon as he saw me his first words were, "You don't look good."  Not something you want to hear from your doctor, even if he was right.  I had lost about ten pounds and looked gray, but nothing was obviously wrong.  So, he took some blood and gave me an exam and adjusted my insulin.  That night, around 10:00 (which I found strange), I got a phone call saying that some of the blood tests were really strange-looking and I needed to come into the hospital to re-take them because the office was obviously closed.  I was kind of shocked, but they persisted, and even sent an ambulance to come get me.  (Dursy's first ambulance ride!)
I was in the emergency room for awhile as they rushed around, stuck things in me and to me, and told me that my red blood cell count was less than half of what it should be and I needed a transfusion.  A couple pokes and prods later, I was admitted to Beth Israel Deaconness Medical Center.  Despite the severe anemia, no one yet knew what was wrong with me.
Five days in the hospital, and I was given a lot of tests, including a CT scan, an MRI, a bronchoscopy (where they stick a tube down your throat and look in your lungs) a bone marrow biopsy (where they stick a very large needle into the bone at the back of your hip and extract the marrow to look for lymphoma) and even sticking a huge Q-tip up my nose.  All of this came back negative, except there was still blood in my lungs.  it was determined that I had a gland on the top of my lung called a thymus, which was causing everything but could be removed on an out-patient basis, and I was told, best-case scenario, that gets taken out and everything goes back to normal.  Finally,with what I thought was a diagnosis and with two new bags of blood flowing through my veins, I was sent home.
Three days later, I saw a rheumatologist for the first time, and he said he had seen my files and wasn't convinced that the thymus was the issue.  More bloodwork was ordered (9 tubes, in fact) and once again, that evening, I received a call saying that I needed to go to the hospital.  I protested and kicked and screamed, but cooler heads prevailed and the next day, I was at Beth Israel.  Same floor even.  Same nurses.  The only real kick in the face was that it was the day before my birthday.  Certainly the worst one ever.
I was finally diagnosed with Wegener's, and because of it being so rare, I was seen by about a billion doctors (including 4 kidney doctors whom I dubbed the Marx Brothers.  The "Groucho" was already telling me to freeze my sperm because of some of the side effects of treatments that I wasn't even receiving yet.  Not really a great bedside manner.)
Still a concern, they wanted to biopsy that thymus, which they determined was mostly filled with fluid.  While going in to extract some of it, they actually pierced and collapsed my lung, which they told me was extremely rare.  So, bucking the trends again, eh?
The next day, a tube was inserted into my chest to suck out the air pocket around the lung to create the room it needed to re-inflate.  After all I had been through already, THIS was by far the most painful experience.  The doctor performing the procedure said there would be a little pressure, but it was literally as much pain as I had ever been in in my life.  And it had nothing to do with the Wegener's.
The second hospital stay lasted one week, and included a stay in intensive care to get my sugars under control (the steroids I'm on cause my blood sugars to go pretty high)  But I am now home and on the mend.  Two more treatments of rituxan after today, and eventually a tapering off of the steroids, and hopefully I'm basically free and clear, if all goes according to plan.
Were I not diabetic, would I have gone to the doctor at all to see if they could get the sugar down?  That is the real question.  Obviously, there is no answer, but the reality is that I did and they doctors were able to catch it before it got even more severe because, untreated, Wegener's will kill you within months.  I wouldn't say I had a brush with death or anything, but it does change your perspective a little as far as what's important.
Which brings me to Dursin's Final Thought; I want to throw out a thanks to all the folks who visited, sent a card, an email, gave me a call, or just generally thought good thoughts about me while I was laid up.  It really helped and still does help as I recover and deal with this thing.  I love you all and I guess all I can really add to that is, "Keep up the good work."  It is still needed, and very appreciated.

Wednesday, April 06, 2011

Passed Their Prime - My Buddy Optimus Always Rolls Out When I Need Him

I'm not sure if it's my generation, or maybe just my friends, but often when life gets a bit daunting, we turn to the past.  We look to our youth for comfort, when times were simpler.  Not having a major war to suffer through, my generation likes to look back, as James Earl Jones says in Field of Dreams, to a time when "all that once was good, and it could be again."
But this can be taken a tad too far.  The other day, my roommate and I were flipping channels and came upon early-80's stalwarts The A-Team and The Dukes of Hazzard.  While we passed them by, I did feel the need to mention that, as terrible as they may seem, I would have literally thrown a tantrum if I missed either one back in the 80's.  While I may have been too young to be seeing that kind of violence and sexual content, I still had to watch, and I think most of the country did, as well.  remember, we only had a few channels back then.  However, make no mistake, these were awful shows any way you slice it, so no matter how daunting life gets, I have yet to turn to them for a reminder of all that once was good and could be again.  Although I'm sure there is a sub-section of society that does, just as there is a sub-section that thinks that the entire A-Team was, in fact, gay.
Recently, I have been seeking that comfort in a more benign form: the original Transformers cartoon from 1984, having discovered that it runs in the wee hours on The Hub.  Bearing little resemblance to the ridiculous live-action movies, this series was a spin-off of the Hasbro toys, which were alien robots that turned into cars, jets, guns, et al.  The toys themselves were a tough sell to someone like me, because they were rather floppy and brittle, and they had to be able to actually transform into things, so the design was pretty pretty bad.  They all had wheels and windows all over the place.  Not to mention that it took several minutes for me to actually do this (while trying to duplicate the noise it made on the show).  My attention span in 1984 just didn't account for transforming things.

But with the show came a new way to enjoy the Transformers, and enjoy them I did.  Marvel also published the Transformers comic book, which told a similar story, but did go off on rather bizarre and stupid tangents at times.  And a lot of the characters were colored rather inexplicably.  But it didn't matter, I was hooked.  In 1986, with the release of the first Transformers: The Movie, which saw the destruction of most of the '84 toy line (deemed violent enough for a PG rating despite the fact that the characters being violated were robots), I remained loyal even though the entire series shifted into the then-future 2005 Transformers universe.
Even after the show was put to rest and I got a little too old for Transformers, I still followed the comic, actually becoming quite hooked on the final ten or so issues in the early 90's, before Marvel killed that off as well, due to lack of sales.  Despite the fact that I felt a bit silly being in high school and reading what will always be referred to as a "toy book," I tried to get my friends to buy it to keep it going.  So young...
Anyway, we all grew up and moved on.  College called, and for some, actual real life.  For others, we were pulled back in as the early part of this decade saw Dreamwave Productions revive the comic book franchise, selling millions of copies of their new version of the comics to folks like me, who now needed the comfort of that simpler time.  Unfortunately, while the artwork was spectacular, the stories were basic re-treads, and their sporadic release schedule lead to a quick death of this Transformers incarnation, and eventually for Dreamwave itself.
Recently, IDW Publishing, hot off their revival of the GI Joe comic franchise, started an all-new Transformers continuity, again having nothing to do with the crappy live-action movies.  In fact, these have actual stories, and despite the fact that I am almost 35, it is one of the comics I look forward to reading every month, far out-lasting its Dreamwave predecessor, proving the good stories will trump everything when it comes to comics.  And me.
In fact, it really proves a lot of things.  For one, nostalgia can only take someone so far, as I'm pretty much already done with the 80's cartoon re-runs.  It was fun, but it really wasn't a great show, and I'm obviously not just looking at them through rose-colored glasses.  Not that childless men in their mid-thirties were the target demographic anyway, so they served their purpose: nostalgia.  But the new comic series is clearly a different case, because I probably am the target demographic for that, and I really like it.  So, mission accomplished there as well.
When you really think about it, though, Optimus Prime and friends have been with me in some form or another my whole life.  And unlike my favorite bands or actors, they never get old.  I do, but they will remain 

Thursday, March 24, 2011

Well, here i am...

So, not to get all woe is me, but yes I am in Beth Israel deaconess medical center. My red blood cells were apparently about half of where they're supposed to be the other night, so I was given a transfusion and now have good blood pumping through my heart.
And yet here I am.
According to the doctor, it is so rare to be this anemic and still upright, that they don't know what could have caused it. So, it's basically like an episode of House without the beautiful people. The doctor also said I will probably be discussed with med students because I'm such a rare case.
Even half-dead I need to buck the trends apparently.

Tuesday, February 22, 2011

I might have a problem... Might

Soon I will be 35 years-old.  Most people seem to think this is okay.  Probably because some of them have done it already, and some of them haven't.  And let's face it, regardless of how you face it, it's coming.
None of the people who have said it's no big deal to turn 35 have a huge collection of Jokers.  In that, I stand alone.
In fact, I'm not exactly ashamed of this fact.  The Joker is an icon, after all.  Not some silly cartoon character, but equal parts jester, clown, lunatic and sociopath.  Some have actually analyzed him the way scholars pull apart Hamlet or Macbeth.  I haven't, because while I like to believe that I am so intelligent that I could come up with a really accurate psychological profile of the Man Who Laughs, the truth is I just think he's pretty cool looking.
So, it's not the bookcase full of Jokers at 35 that makes me feel strange, because everybody needs something to do.  Maybe it's more what I don't have at 35 that gives me pause.  Namely, anything else.  Poll most 35 year-old males in this country and I'm sure a large percentage will have one, if not all, of the following items; car, house, spouse, offspring, place of worship and a semi-regular vacation destination.  My life is bereft of all of these things.
While I am almost 100% to blame for this, some look at my life and think that I have the freedom to go and do whatever I want all the time.  Except now at 35, I feel like the list of "whatever I want" has gotten smaller.  I really don't find myself wanting to do much of anything any more.  I think what these people mean is they wish they didn't have the obligations they do.  And probably wish they too could come home from work, take a nap, cook some hot dogs and eat them in front of the TV, before surfing the web a bit and then going to bed.  But that's basically it.  So, sorry to burst the bubble, but the whole freedom thing isn't so glamorous.
Still, what exactly should I be doing?  Solving the climate crisis?  Owning things for the sake of owning them?  I honestly don't want a car or a house.  Or offspring.  I figured out awhile ago that you can't take anything with you, and while it's nice to have something to offer when you're courting someone of the opposite sex, I find experience is the best currency anyone can have.  Besides, if you are doing anything like that simply to get someone to sleep with you, then your problems run deeper than you think.
I don't really have any answers on this one.  All I really know is that years ago I made a decision to live my life this way, basically on my terms, and I have done that.  Yes, I have searched for that special someone, and yes, the search continues, but even that is on my terms.  And yes, holidays and certain other occasions are boring when you're mid-30's and alone with your Jokers.  But the bottom line is, what, really, would I change st this point?
Perhaps I'm not the best-suited to answer that.  Any ideas?

Tuesday, February 15, 2011

The Indifference of Heaven

Yesterday was apparently Valentine's Day.  Now, it's not a day I traditionally observe, like Guy Fawkes Day or Yom Kippur, but i usually am aware of it's presence.  In fact, in the past, I often hated it with such a passion, that I think if i put that much passion into celebrating it, I wouldn't have had to hate it because I would have had some love to celebrate.  Granted, hate is always much stronger than love, but maybe even a portion of that hate would have done the job.

I even believed that I once had a tradition of writing something scathing and bitter every Valentine's Day, but a look at some past February blog posts has yielded nothing of the sort.  I only went back a few years, but I think that was sufficient.  Enough to tell me that the hatred is gone.  Replaced by love's true opposite: indifference.  Not only did I not hate Valentine's Day, it barely registered.  And I wonder if I'm the only one.  I'm sure the cards were bought and flowers were sent, but not too many people even talked to me about it.  Perhaps out of fear?

Anyway, Valentine's Day is simply one of many things that I have chosen to feel indifferent about.  In fact, other than money, which I worry about quite a bit, I'm pretty much indifferent about everything.  Years ago, when my engagement was literally flushed down the toilet, the Hate E-mail that my ex wrote me soon after blamed me for the entire break-up, saying that I had crushed her "loving spirit" with my indifference.  When my last girlfriend announced she wanted to move back to Connecticut to be closer to her family, I pretty much said, "Have fun!"  This is who I am, apparently, and to be honest, it's starting to bum me out a little.  I mean, how do you make yourself care all of the sudden?

Lately, I've been trying to seek out the little things that I used to enjoy.  I watched some old cartoons including Disney's animated Robin Hood and the original Transformers series.  I downloaded "Sweet Child o' Mine" from Amazon the other day.  I even bought a box of Fruit Roll-ups a few weeks ago.  All in an attempt to find something that I won't be indifferent about.  I don't believe my life is going to be significantly turned around by cartoons, Slash or rubbery, sugary faux fruit products, however.  A greater shift is required.

Or not.  Who knows, really? 

Monday, February 07, 2011

Loose Connections

This may get a little graphic.

As I rapidly approach 35, and possibly another 40 years of this, I find myself more and more asking that unanswerable question: why?  Not, like, "Why are we here?" or "Why can't man right his own evil?"  More like, "Why is the world like this?"

After another failed would-be romance, I recently found myself at a bit of a crossroads.  I could simply get back on that horse, sign up for another dating website, log into some chat room or something, and see if I can find The One.  Or I can very easily not do any of those things and retire from dating.  I've tried both, and neither of them seem to bring much satisfaction, but the retirement brings fewer gray hairs.  In the last couple years, I went on several first dates (more than I ever thought I would go on in my entire life) and each time, when I e-mailed seeing if they wanted to go out again, they said the exact same thing: "I just didn't feel a connection."  Now, I have (finally!) come to terms with the fact that some people just don't "feel it" when it comes to others, especially in a dating situation.  I have not "felt it" sometimes, but I was usually willing to give them a second try.  Maybe it's different with men, because we can not feel anything and still usually "perform" in the physical sense.  I suppose women do need to feel stuff in order for them to allow men to do *that* inside of them.

Still, I am left wondering what is it that makes me so unconnectable?  I mean, I know I'm not supposed to connect with everybody, but should I connect with somebody?  My friend told me that because I'm a nice guy, and relatively easy-going, I sense a connection with almost everybody I meet, which leads me to say ridiculous things or perhaps come on too strong.  Probably a fair point, but I think I've been around long enough to know when a connection pretty genuine.  And think about this; looking at them now, I doubt very seriously my mother felt a strong connection for my father when they met, but here they are over forty years later, still married.

There's the rub, my friends.  Times have changed.  Forty years ago, people just met, dated, got married.  A simpler time.  They didn't even have to pay for cable or internet or DVD's,... No wonder they could stay together.  Where were the financial troubles?  Now, we need connections.  We need to be connected by our phones, via twitter, facebook  We need to shop around when we're dating.  It seems that even though people have become more tolerant of race and color, we have lost a tolerance for the little things ("Now, Joe, I have no problem with you being black, but that noise you make with your teeth?  There's no way we can stay a couple under the circumstances.")  I don't know when or how it happened, but it did.

Most importantly, I don't know why.