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 other 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?