Sometimes you need a cure for the cure!

When dealing with something as serious as curing cancer in the "conventional" method, it's quite different from what transplant patients have to go through.  When you have cancer, once you hear the word "remission" from your oncologist, that's it for the most part.  In most cases once you go into remission, you are now one of those elite cancer survivors.  You begin to cherish every breath you take from that point on because before you were in remission, those gasps of air were in no way guaranteed.

For transplant patients like myself, the story doesn't exactly end there.  My issues were cured in such a way that the battle doesn't exactly end with the cure.  In fact, the cure itself might be what ends up leading to your demise.  In special kinds of disorders like mine and ones like the awful diseases that are Lymphoma and Leukemia, a stem cell transplant to replace the afflicted's own immune system with that of one modeled around the stem cells from a very gracious compatible donor (I think blood donors and donors in general are the saviors of humanity, but I guess my standpoint is somewhat biased).  So, at the start of the transplant, you have two organ systems in one person designed to keep the other organ systems safe at all costs.  Both with knowledge of what they believe to be invaders (basically any foreign body).  Yeah, this doesn't always end well.  (this battle is known as Graft vs Host Disease or GVHD.  If you've spent any amount of time with me over the last year, I've basically rammed this term down your throat)

Now, from all the tests that these people run on me every week, every indication is that I'm completely free of Myelofibrosis.  Of course, this is far from me being cured of symptoms.  The GVHD has manifested itself and taken hold of my life like a leach.  Just draining the life from me both metaphorically and actually.  My life is not my life.  When I look in the mirror, I can barely recognize looking back at me.  When trying to control symptoms of GVHD, my doctor admits that it's more of a finesse art than it is a science.  The first thing he decided he would like to try is what he refers to as "therapeutic phlebotamy"... You might remember it from the middle ages when they called it "blood letting" and used leeches.  500 years of medical advances and the first swing my award winning Oncologist takes is a blood letting.  I knew all these damn Twilight movies would have an adverse effect on our society.

Luckily, my hemoglobin counts are actually at a level which the doctor is confident that I can undergo some  treatment to reduce the amount of iron and other toxins in my blood that might be causing some of these post cure problems.  That's quite a big step if you think about where I was just maybe 2 years ago when every month I was being shuttled to the hospital (once even in an ambulance!) because my blood counts were so low they were afraid I wouldn't make it another few days if the levels kept falling.

You know what, though?  This isn't supposed to be a post about my blood lettings, so I digress.  This is a story of why I believe us bone marrow transplant survivors have an extra wrinkle on our road to recovery as opposed to other cancer patients.

For us, we're asking a foreign immune system to come into our body, make itself at home, take over part of our native immune system, fight off what the doctors want it to fight off, identify the good parts and protect them, and also make nice with what's left of our old immune system.  Wow.  Just READING that is exhausting.  Imagine LIVING it.  This whole situations is basically a benevolent (and PERMANENT) occupation of your immune system.  Now, I know what you're thinking...  There's no such thing as a benevolent occupation.  and I guess that's the point.  What's left of the old immune system is constantly sparring with the new one.  The new one attacks your body as it sees your organs, blood, tissue, yadda yadda, all as foreign bodies (because to it... YOU ARE!  Oh, and if it gets to your intestines... WATCH OUT!).   Oh sure, they can prescribe a plethora of immunosuppressive drugs, anti fungal medications, steroids, narcotics, and whatever else you're willing to swallow in order to mitigate the symptoms.  But in the end, in the war between the old immune system and the new one, you are left to bare the results.  I've had good days.  I've had bad days.  I've had weeks where I could get up, go to work, come home, and then repeat the process over.  I've had days where a normal day of work led me to come home, pass out, and literally not have the strength in my legs to get up.  I've just spent four days where I was so fatigued that I spent approximately 30 hours of those 4 days sleeping.  Not resting in bed... SLEEPING.  I cannot describe to you how miserable you feel after sleeping for 10+ hours and have to wake up not feeling rested.  It's enough to drive someone crazy.

So here I am.  Am I winning?  I thought I was.  Back in January I thought I was on the right track to gaining some sort of ground back at work and getting back on the life path that I had invisioned for myself.  I saw the 1 year anniversary of my BMT coming across the bend and I thought I would meet it and pass it with a smile and move on.  Get to a point where THIS IS NOT WHAT DEFINES ME.  Instead, my 1 year anniversary slapped me in the face and reminded me that this isn't over.  Not by a long shot.

Making plans to change the world while the world is changing us.

So here we are again.  I'm a little more than six weeks out of work and struggling to get through most days.  Each day is a battle with physical pain, fatigue, emotional stress, and other various demons.  It's awful.   Believe it or not, February 11 was actually the one year anniversary of my stem cell transplant.  That was more than a month ago, but that's not even the point.  It's been more than an effing YEAR and I'm still dealing with all of this!  That's not what the plan was!  I've had my struggle.  I've paid my dues.  Damn it, I've been paying my dues for years!  Isn't it time that I get to move on with my life!  Isn't it time that I get to live without having to worry what the lab results dictate I can do?  Hasn't my wife earned a life where she doesn't have to temper what she wants to do and where she wants to go in the fire of my affliction?  Isn't it our time now.  We did the sick thing.  Been there.  Bought the t-shirt, sent out the postcard.  It's time to come home and begin living. 

Living.  I've really learned the meaning of that word over the past few years.  What living is worth and what it's not worth.  After being so close to death so many times (even recently... we'll get to it) , you really learn how true the cliches are.  You find out who your real friends are.  You find out what's important to you.  You widdle life down to its bare essentials and prioritize.  You make the most of what you can with you can.  Time becomes something completely different.  Time becomes a precious commodity like no other.  Maybe one day, hopefully 25 years from now when I'm well beyond this trying to raise 2 healthy Yankees fans I'll become complacent about what I am going through now, but right now.  Right now as I'm in the middle of it, it's beyond anything I could express to you or to even comprehend myself.  So why bother, right? 

Time.  I feel it slipping away each day.  Each day that I spend locked up in this apartment not advancing my life to the goals I set after I got out of the hospital.  I feel the substance of my life slipping away with each visit from my physical therapist as he tries to explain to me the long process this might be.  I see the wretch I have become in the mirror hiding behind a beard from the weight gain that I blame on medication and steroids but is really from my lack of self control and food just being damn delicious.  I feel the goals I had set forth for myself after getting back to work slowly falling from my grasp with each doctor's visit that my oncologist tells me that I need this treatment or that treatment and that I can't return to work because my body will just break down again in the future.  All of these shenanigans are costing me the one currency I can't make any more of no matter how hard I try... Time.  I need TIME.

Thanks to the glory of Facebook, I see the lives of everyone I've ever glanced at awkwardly in a hallway at the mall when I was 7 and I see them living and I'm overcome with jealousy.  Even simple things that I can't do.  Do you know that my wife and I haven't even been on our honeymoon yet?  Is that fair to her?  Is it?  It's ridiculous is what it is.  How could she signed up for this knowing what she knows now?  I see the pictures of other people and I'm..  I'm just so jealous...  We should be doing some of that fun stuff.  I'm not saying that Anita and I would be jetsetting every weekend, but for fuck's sake we couldn't go for a walk yesteday because after a tenth of a mile, she had to help me back to the apartment up the steps because my legs hurt so much.  CAN I GO ON A WALK WITH MY PRETTY WIFE?!?!  CAN I HAVE THAT!

Ok, I'll stop with that now and get to the meat and potatoes of what's wrong this time.  The evil demon GVHD or Graft VS Host Disease to you doctors out there.  Pretty standard story.  Pretty standard story for me, at least.

At the end of January, I was having some problems that I didn't think were so bad, but I called the doctor anyway (I hate calling the doctor because their answer is always to side with caution and come in to the hospital... I obviously hate hospitals).  In the back of my mind, I was nervous.  I never shared this with anyone, but I was afraid the difficulties I was having might be related to the fact that I was being weened off of the antirejection medication and letting my body fend for itself more and more.  This is what I wanted.  I was taking aboutu 12 pills every day just to stay upright.  I know to a lot of pill poppers that sounds like Disneyland on cocaine, but for me just trying to go to work and put his life together, it was monotinous and terrible.  I thought a little discomfort at first was fine.  I mean, my life had turned into just a string of discomfort here or there, I just had to learn to get used to it.  I figure dI could get some pills to mitigate these symptoms until they subsided.  Easy peasy, japanesy. 

Of course not!  When could it ever be that easy for me?  What was I thinking.  I had received the medication on Thursday night from my doctor and started taking it on a Friday.  By Wednesday, I was actually WORSE off than I started.  Yeah.  So?  It's off to be admitted to the hospital we go.  They don't know exactly what was causing the symptoms, but 3 days of IV steroids and they served me up nice and good.  Friday night, I was home free.  Or so one would thing.

Saturday night, I'm sitting in our living room minding my own business watching television with my wife and probably thinking about how damn lucky I am to have her in my life.  Because I am.  Damn lucky.  Anyway, out of nowhere, I feel pain in my abdomen.  I exclaim, "Hey!  Something's wrong!"  This is mostly ignored by Anita because I'm always having some sort of sharp pain somewhere and they always go away.  She couldn't have known how much worse I felt, I didn't elaborate... Or at least.. I didn't have time to.  As soon as I made my exclamation, I doubled over the end of the couch writhing in pain.  I took what wit I had left and jolted to the bathroom.  The groundswell of pain in my abdomen was so great that it caused me to vomit.

   At this point, Anita got the hint that this might not be some normal bout of pain that I was whining about.  Anita dutifuly rushes to the bathroom to assess the situation.  She dials the doctor's paging service and leaves a message.  While this is happening, the pain in my abdomen increase 1000 fold.  I couldn't contain ir anymore, I was yelping out in pain quite loudly.  In the five minutes that passes, it's obvious that we have to head to the hospital.  The doctor on the other end of the phone can hear me crying out in pain and without Anita having to explain it to her, she says that she will let the ER know that we are on our way.

The car ride from Plainsboro to Philadelphia was the worst ride of my (and probably Anita's) life.  I was SCREAMING in pain the entire way.  Just screaming.  It was more pain than I'd felt all at once since waking up from the splenectomy.  And there was no way to stop it.  Before we left, I'd already taken a TRIPLE DOSE of my pain killer.  I never dared to even double the dose because my pain killers are so powerful.  Here I am sitting at 3X and nothing to  even ease the onslught in my abdomen.  I force Anita to stop several times on the highway just because I need to stand upright.  I actually needed to squirm.  She keeps trying to convine me that it's just better if we pushed on.  At the time, I think I took it as an insult.  Did she really think I wanted to delay the time to the hospital?  THAT'S HOW MUCH PAIN I WAS IN!  I actually wanted to stop and have it take longer.

After what felt like forever and a day (but was probably closer to an hour), we were there.  In the ER at UPENN.  People were trying to ask me questions, but all I could do was yelp in pain.  I don't know how I got through that triage interview.  They took mercy on me and sent me immediately to the back without having to wait.  They saw how much pain I was in.  Keeping me in the waiting room would just make the natives restless.

I'm in one of the ER rooms and I'm a complete dick to the nurse.  I don't remember why I was, but I was in SO MUCH PAIN and the stupid nurse was being kind of short with me.  I apologized a thousand times for my tone, and I explained that I'm trying to answer her questions, but I'm in an excruciating amount of pain.  But she was still cross with me and I let her have it.  There's no reason to be a jerk to me in that situation.  I was honestly trying to be calm and collected.  They must have pumped me full of ANOTHER 4 or 6 mg of IV dialaudid and that at leat pushed me to a place where I could speak rationally.  The apologized to the new nurse before me for what I had said to the previous nurse and she told me not to worry about it and that she'd probably heard a lot worse from people afflicted a lot less.  A little reassuring, but still.. I felt bad.  These people are trying to help me.

After a gazilion tests and once I was stabilized, the guessing game started and 6 weeks later here I am.  What happened?  Well, while the doctors were trying to ween me off of the antirejection medication to see if my body could fend for itself, they underestimated what my body was capable of doing.  The toll of me trying to live my life was too great and my immune system was much more fragile than they had hoped.  So what happened?  That wonderful GVHD had wondered itself into my intestines (the worst place you can get it) and started to cause chaos.  That pain I was feeling was my bowels being partially obstructed.  I was told I was (yet again) lucky that I hadn't had a complete bowel obstruction or a tear or else...  This might not be me writing this story.  It makes me feel lucky to be in this position, but it also makes me question exactly how many lives do I have here?  I feel like I've come up with at least 5 thus far.  I'm not a cat.

So, I was hospitalized for another week and it was decided that I needed my immune system to be built up before I can resume life/work and that the most important thing I can do for myself right now is to rest and allow the medication to do its thing and to allow my own immune system to strengthen.  Of course, at every subsequent meeting with my doctor, I've asked if I can return to work.  I don't have the TIME for this.  Apparently, he disagrees.  Either that or he doesn't care about my plans.  I don't argue with him because... Well... I mean.. He did save my life.  I guess I have to give THAT to him, right?

I'm back in full force on the antirejection medication.  Shaky hands and everything.  I'm on 3 different types of steroids.  Remember at the beginning of this post when I complained about having to take about 12 pills a day?  Well, bring that up to about 24.  24 pills a day just to stand up in the morning.  Is it even worth it?  I've been trying to make the best of it, but it's difficult to see the bright side of anything at this point.  It's difficult to put a silver lining on the darkness. 

I can't really talk to anyone because I'm sure everyone is tired of hearing me whine about how tired I am.  I try to make plans to have people come visit me or have short visits places so I don't feel so isolated, but of the 5 that I planned, 3 fell through at the last minute.  Two of them because of sickness has held me back.  But what can I do?  Each day I mark the time and march on.  I keep going because I don't have a choice otherwise.  I march on in hopes that my next lab report will hold something different.  I mark time until I have something better to record.  4:45am.  Mark.

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I Hope the Leaches are Fresh Today

So, today I had my first real live blood letting.  Don't get your mind twisted.  A blood letting is exactly what you think it is.  Don't let the modern term 'theraputic phlebotomy' sway you into thinking this is anything more than draining me of bad blood.

Now, there's an entire back story as to how this is all going down now and how far I've fallen off the recovery wagon thanks to my erratic co-pilot GVHD, but I haven't hada the inspiration to write about it as in depth as I should (Read:  TV was really good over the last few weeks). 

The gist is that while I've been recovering slowly, toxins have been accumulating in my body as well as very high volumes of iron.  It has reached a point where I can no longer function for an entire day.  I'm yet again slumped into short term disability, trying to claw my way back to being a productive member of society.  Yeah.  It sucks.  But i digress.

Here we are, on Meatless Monday no less (that is another story for another time) at The Hospital at the University of Pennsylvania Blood Donation Center and I'm peering around the corner looking for the leach room to get this blood letting on the road.  Sucks for me, there are no leaches.  It's just a standard blood donation and they dispose of the blood at its completion.  Pssht.

Anita and I sat there as the nurse prepped my arm by rubbing it with what I could only surmise was iodine by the smell of it.  I'm not freaked out or anything.  When you've had as many major and minor procedures as I've had over the past 4 years, iodine is the least of your concerns.  From me accompanying Anita to her blood donations, I came prepared for a short ordeal.  I brought my tablet to watch a movie on while the blood was being drained to pass the time.  Normally, when Anita donated blood, it took upwards of 45 minutes.  That sounds like an episode of Mad Men to me!

Apparently, the hospital had an entirely different time line of events.  When she finally revealed the 16 gauge needle that was to pierce my now slightly jaundiced looking skin (from all the iodine) I have to admit my mouth fell open a bit.  To her credit, she didn't give me a moment to hesitate and she shoved that tree truck right into my arm until it disappeared and before I could protest.  Wow.  It was a big needle.  Google it.  16 gauge.  Not fun.

Of course, since the whole and drainage system she had now created in my arm could roughly service a small restaurant, the blood let out in literally 6 minutes.  It took Anita longer to pick out her shoes this morning than it did for this procedure to come to completion..  Great work, right?

The funniest part of the whole thing was watching the nurse slink away after she'd treated my arm for the bleeding over to the nurses' station with the bag of blood in her hand.  It was almost TOO nonchalant, the way she just plopped that sealed bag of my blood into the bio hazard disposal bin.   It made me kind of sad.  I fought for 4 years and went through HELL to accumulate enough semi-healthy blood that they just drained and so unceremoniously disposed of.  That blood deserved a much more heralded end than the one it received.

So that's where I am.  On our way home, I actually did start feeling a bit woozy from having lost blood (Anita drove back from Philly).  I have another session of blood letting in 2 weeks and they'll check the toxin level at that point.  Then we'll see.  I am growing weary of the uncertaintly involved in all of this now.

Before, I had assumed that 2/11/12, the one year anniversary of my transplant would be the final marker.  The last time I would have to keep track of how I was feeling.  Somehow, things got out of control.  I got WORSE after that date and have yet to recover.  I met a nice lady while waiting for Dr. Stadtmauer who also had a stem cell transplant and was THREE YEARS into having complications.  She's much stronger than I am because if I have to do this for 2 more years and STILL not see a light at the end of the tunnel?  You might as well put me in a rubber room now.  But I guess I'll save that sort of anymosity for my explanation as how I got to phlebotomy.

I can't wait for baseball season!  Let's go Yankees!

Late Night Ramblings

“When everyone else goes home, you’re stuck with yourself” – Layne Staley

 

You know, I’m not as big into the grunge/depressed music scene (though I still appreciate it), but Alice in Chains will have always played a deep roll in who I am, for better or for worse.

The doctor is encouraged by my progress after my bone marrow transplant, but the after effects are absolutely horrifying.  On Thursday, it was decided that I need a week off from work just to regain my strength.  I’m hoping that I get the rest that I need, but this insomnia thing isn’t exactly helping.

For some reason, Cinemax keeps showing Robocop and I’m totally OK with that.

One of the shortcomings that I have now is extreme fatigue.  It’s costing my footing at my job and time with the ones that I love.  Recently, I missed the Christening of one of BEST FRIEND’S son.  The day of the Christening, I woke up at 3:00 in the afternoon.  It wasn’t fair and I’ll never get that back.  She and her husband (also a great friend now) will be in my life for the rest of my life and I feel like it will always be a stain on our relationship.

Have you SEEN the pictures from my wedding?  Can you imagine a more beautiful bride?  People that know me (and know what I look/act like) see a picture of my wife for the first time and their first reaction is always something to the tone of, “How the eff did you pull that off?”  My response is and always will be, “I have no idea and I don’t deserve her.”

Is anyone else rooting for Newt as much as I am?  I mean, it’s not everyday you get a family values candidate on his 3rd wife.  I’m a little concerned that if he should win the presidency, with the economy ailing the way it is, he’d be inclined to leave it for a younger, more healthy economy.

So, after about 5 consecutive years of just absolute mismanagement by the Dolphins culminating in them courting a head coach while still actually having a head coach of their own,two of the biggest Giants fans I know encouraged me to return to the team of my youth, the NY Giants.  I’ve been a Giants fan all season and let me tell you, this is by far the best football season of me life.  THANK YOU!

There are times when I miss some of the other livejournal/internet friends that I had back in the heyday of blogging and whatnot, but I would not be willing to trade any of them for the ones that made the leap to ACTUAL friends.

Seriously, Robocop is amazing.  DEAD OR ALIVE, YOU’RE COMING WITH ME!

One of my better friends had laser eye therapy treatment surgery so now he doesn’t need glasses.  Is it wrong for me to buy him a pair of fakes glasses so I’m more comfortable looking at a familiar face that I’ve seen on and off since I was in 2nd grade?

My best friend as a child was just on Jeopardy.  He won something like 8 games in a row and 200K+ thousand dollars.  His mom taught me how to dive in his pool when I was a boy.  This story has been told 29803984230984 times over the 2 weeks Jason Keller was on Jeopardy.  To the same 4 or 5 people.  There are about 4 or 5 more people that hate me now.

I’m getting a little sick of the storylines on Glee, but I will always love what it represents.  Inclusion.  For everyone.  Oh, and I loooove the songs.

I try to pretend that I’m some sort of moderate progressive, but if you look at my twitter feed, it’s fairly apparent that I’m a huge liberal douche.  And a huge sports fans.  I guess both are true.

I’m serious, you need to go to my Picasa page and look at 9/17/2011 and the pictures of my wife.  I’ll wait…. …. …. ….  WHAT IS THAT BEAUTIFUL WOMAN DOING WITH ME?!?!  My face is like 8 different colors since my BMT!  I’ve even grown a beard to hide some of the disgusting.

Robocop is now over.  Sadness begins.

Some Ben Stiller movie is on.  If I knew where the remote was, I’d change the channel to SportsCenter and watch more highlights of the NFC Championship game!

One of my friends from work is leaving and moving to Texas.  Huge blow.  It took me by surprise.  I thought my core group of friends at work would be together for years to come.

One of the main selling points of us moving into this apartment was that we thought we would be only 20 minutes away from two of my best friends.  Turns out, we’re only about 12 minutes away.  They’ve already saved my life once.

As liberal a douche I am and as obvious as my vote is going to be in November, I’m not super pleased with our President.  He’s watered down many of the promises he made 3 years ago and a good number of the people in ranking positions in the administration had A LOT to do with everything wrong with the financial system.  Maybe Tim Geitner and Larry Summers aren’t the right people to reign in the banks?  That would be my first thought.

I haven’t actively been involved in fantasy sports for a few years due to illness/marriage.  I’m really hoping to dive back in and make a difference.  Obviously, that’s not going to happen.

Too early for flapjacks?

I think Coming to America is my favorite comedy of all time, but my favorite actor in comedies is and always will be Bill Murray.  Your favorite actor should be Bill Murray, too. 

I’m about 2 weeks away from the 1 year anniversary (my Onocologist refers to it as my new birthday) of my bone marrow transplant.  I wonder if we’re going to do anything to acknowledge it.  I can’t believe it’s been an entire year since this process starts but at the same time, it’s been one hell of a year.

I’ve never been closer to my sister in any period of my life than I am now. I think much of that can be attributed to my illness and the fact that everyone loves my wife and that always gives me a bump.  Either way, I’ll take it.  Nothing is more important than family.

People who take karaoke very seriously and don’t embrace it for the glorious public self-ass-making that it is are just full of themselves and need to lighten.

With the meds I’m taking combined with my general lack of motion, I’m the heaviest I’ve ever been.  By far.  I’m hoping that I fix that this year.

My brain is ceasing to function, I better wrap this up.  Good night.

I’ve made up my mind, no need to think it over

Many people in my Myelofibrosis support group asked me for a real update about how I was doing.  I didn’t really have an immediate answer because unfortunately, “how are you” has become one of the world’s most complicated questions.  It has been known to start its fair share of sidewalk wars.

Anyway.  I’m going to talk about my medical situation and what’s going on inside my body and how if affects the rest of the world around me.  Going into our wedding, I wasn’t do so well.  YEah!  I got married!  There's going to be a completely over the top post for that wedding,  I’m still trying to pull it all together.  After consulting with the doctor, he adjusted my medications and I got through our wedding.  It was one of the most wonderful moments in my life. Strike that… IT’s THE most wonderful moment of my life.  But that must come later.

After the wedding was over, I was knocked out with fatigue.  If I recall correctly, I had 3 days to recover and try to make it back to work (we didn’t go on our honeymoon until later since Anita has her Pharm school0.

After I got over what I dubbed the wedding fatigue, I started getting a little bit better.I was feeling more energetic.  All the while we’re trying to put our apartment together.  I had enough energy to put together ALL the new furniture that was bought.  Yes, there were nights where my hands shook too much for me to be doing these sorts of things, but I was determined.. 

I had a few tasks like these and I think they helped me feel better.  But for some unknown reason, everything went right down the tubes right around the time the seasons changed.  I’m having difficult moving.  Right now my work week is 3 days in the office and 2 days from home.  That schedule has been beating me up.  Even being in the office has been very depressing.  I’m constantly bombarded from higher ups about my deficiencies and I try to explain to them about what my body is exactly doing to me and that I can’t work at the level that I did for now and I’m dealing with some larger issues.  I fear this statement has fallen on deaf ears.  It sucks, but at the same time, my team is second to none.  I have a few at my job that I wouldn’t make it without, even if sometimes I think their jokes go a little too far… Of course… Any good joke is going to go a little too far, right?

So, back to the specifics.  My doctor believes that some of my GVHD symptoms might be making the turn into chronic symptoms.  This is bad.  He proposed many therapies we could do in order to make it better.  Unfortunately, I have no sick days, no vacation days, and only 9 hours of comp time.  And I’m pretty sure she’s waiting for me to make a mistake just egregious enough for them to fire me.  I feel it on my back every day.  Then I’d be ROYALLY fucked.

So, I am currently suffering from extreme fatigue.  I has VERY little energy.  Just driving to work 3 times a week puts me out early Friday and Saturday is normally wasted because I can’t do anything.  It really sucks for Anita because she sometimes scolds me telling me that “She’ll just have to do everything again”  And while I’m sure there’s at least a little merit in it… It doesn’t make me feel good.

My skin!  A pox on my skin!  It’s always dry and itchy.  The hair on my head, hands, and legs is slowly falling out (after it grew back!).  I have an acute case of it on my scalp.  I don’t know what that means, but it looks like I have dandruff constantly.  To not make it any worse AND to hide it from everyone else, I wear a hat everywhere… Even to work.  There are VERY few nights I can go out styling my hair… Of course.. THere are also very few nights that I can actually go out.

My vision!  My one prized possession o f20/10 vision.  ALl the radiation and chemicals have changed my eyes.  I might need glasses.  Boo.

And then finally… There’s a BIG problem.  A Certain organ of mine seems to work on its own schedule and I’ve not been utilizing it to the best of my abilities.  It’s not fair.  She’s been through so much with me and I can’t give her what we both want to do .  I’ve lost a lot of tears over this last one.  Do you ever want to not feel like a man?  Have the latter problem and then have your wife tell you that she has to do everything.  It works wonders on your psyche.

I guess that’s about sums it up.  I try and put a positive spin on all this, but with all I’ve just written, it seems… Kinda crappy.  But I keep on my happy face.  I’m trying to focus on getting into the office 5 days a week by the new year.  That would be great.  Then I’m going to focus on my goals. 

I know that it sounds dumb, but this disease has taken maybe 10 years out of my life.  Well, I’m going to try and use the NEXT ten years to get to wear I want.  I want to reclaim my life from this disease and my own indiscretions  and be where I thought I would be.  I can do it.  If I can get through a stem 8 (plus 1 to come) bone marrow biopsies, a doctor ripping a port out of my chest.having a blood clot in my hepatic vein.  Having a huge blood clot in my lung (when the nurse saw me again a year later… HE WAS SHOCKED I was alive… He just kept going on about how big it was!).  If I can get over having to inject anticoag meds in my stomach twice a day every day for 5 months, administering my own bag drips at home.  After surviving a week of radiation designed to destroy every cell in my body.  AFter surviving a very complicated bone marrow stem cell tranplant, I should be able to accomplsh whatever it is I want.  The next ten years better watch out.

For the love you bring won't mean a thing, Unless you sing, sing, sing, sing.

I’m sorry that I haven’t gotten to the big wedding post… I haven’t gotten to that point.  I don’t think I have to capability to process that much joy in such a short period of time.  I will say this.  I really do feel like I have 2 families now.  And I’m lucky to have both of them refer to me as family.  Every time I interact with one of my in-laws, it’s like I learn what unconditional love is all over again. 

But this is turning into a wedding post and it can’t be that.  I have to tell you how I feel.  I have to tell you wear I am.

To put it simply:  I am struggling.  To most of you, I know it seems as though dark skin, curly hair, and weight gain are all I have to deal with.  I wish I could declare everything that I’m dealing with.  I wish I could write it on my shirt every day so that everyone around me could act accordingly.  Whether they hurt the circumstance, help, or just avoid it.  At least everyone could start being honest.  Most of all me.

I am hurting.  Every day.  I haven’t felt like anything close to ME since before the transplant and to be honest, much earlier than that.  And this procedure.  This life saving stem cell transplant that would give me my life back?  Well in giving me life back, it seems to be draining at my soul.  I can feel it.  I can see it.  Others can see it.  They way they react to me is different.  They way people look at me is different and it irks me.  It’s confirmation that I’m different.  Confirmation that I’m damaged. 

I try to bear it.  I do.  My physical ailments, my mental ailments, I try not to wear their tax on my face.  I keep joking, keep smiling, keep working, keep driving, keep trying do things around the house.  This keeps controversy to a minimum and that’s what I want.  I just want single solitary second where someone thinks, “There goes Paulash again… Working the system” or someone says, “I guess I’ll have to do everything again.”

I wish people would understand I’M trying.  Don’t you think I want to be able to do everything I was capable of doing before this whole nonsense went down?  Why would I.. Why ANYONE want to feel like this every day?  Where getting up is as hard a task as any.  When the day is over your legs are so fatigued they ache so hard you can’t touch them without feeling pain shoot up and down my leg.  Pain that will give me pause when I get up from the chair I’m sitting in.  I have skin so dry, it’s embarrassing.  I mean, I’ve heard a lot of ashy jokes, but my scalp is ashy?  I have to wear hats to work to protect my face from the lights and sun so that my face doesn’t peel off.  I have to put a special cream on my face (with its own set of side effects) all over my face to protect.  We’re in the dead of fall and I have to put on sunscreen every day.  Do you know how much time that takes when you’re trying to get ready to go to work?  I was supposed to visit one of oldest and dearest friend’s house TWICE over the last 3 weeks.  She’s just had an adorable baby and I wanted to spend some time with them.  I canceled on them.  Twice.  In consecutive weeks.  Because it would’ve been a Friday and I just don’t have it after a full week of work.  I don’t have the strength to go to her house and sit on a couch.  Maybe if I talk about this stuff more, people will understand.

I know people have tried to be understanding.  And I know my condition is taxing on you as well.  But, I’m willing to bet that you wouldn’t want to switch places with me.  So, when you castigate me because I can’t perform everyday tasks after I worked an entire day is NOT BECAUSE I’M LAZY, it’s because my body doesn’t have it.  When you choose to spend your time with someone that’s been a thorn in my side for the past 25 years instead of me, the one who fought for your attention for all time, don’t get mad when I feel scorned.  I’m having enough trouble finding people I can REALLY count on than to have to deal with this.

I just know that right now, I’m getting tired and I need somewhere to begin.  Because I don’t want this to be the end of me.  I want to be a survivor.  I don’t want to just be alive.  I want to live life.  I’m hoping to know what that feels like at some point. 

These are my friends..

Alicia

Why is it so hard to find a good hairdo?

11:27 PM

me

I have no idea.

What I DO know is that my wedding ring is AWESOME.

Alicia

It fits?

me

Yeah.

ANd it's got a piece of a meteorite in it.

Alicia

Excellent!

me

I"m wearing it right now.

When Anita finds out..

She's going to have a shit fit.

 

Alicia

Yes. Yes she is.

Take that shit off before you get cheese on it or something!

me

AHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA.

There’s always some reason to feel not good enough

So, Anita and I don't have television right now.  About a year ago, I convinced my mother to switch to Directv (she had previously had Dish) to get their Bengali channels (and finally open me up to some freaking sports channels).  She didn't realize what she was doing and that I was basically manipulating her because I can't  live without sports.  Turns out, she fell in love with the Bengali channel, I got my sports fix (minus my boy Scott Hanson  & NFL Red Zone) and everything worked out well.  Anita and I had a DVR and we watched all our cooking shows and we lived a regular TV life just like everyone else.

Then a few weeks ago, absolute disaster strikes.  DirecTV sends my mom a cordial letter saying that they will be canceling her beloved Bengali channels and basically forcing her to go back to The Dish Network aka the Sports Dearth Network (though they do have the ever coveted Red Zone).  My mom made the switch and didn't even bother getting us a receiver because we're going to be out of here (and into our own place!!!) in just a few weeks.

How have we been getting our TV fix?  Well, I listen to Yankees games on the radio or on my phone whenever possible and we are basically Netflix addicts right now.   We're watching both Mad Men and Lost at the same time.  I have to say, Lost is kind of losing me with this "Others" story, but Mad Men is ridiculous.  Don Draper is what a man should be. 

Why did I tell you all this?  For really no reason than to recall a scene from lost where Jack Shephard has a tatto on his arm translated.  It says, "He walks among us, but he is not one of us".  That is basically how I feel right now.  Somewhere in the midst of my recovery, I've become stagnant.  I'm not really getting any worse, but I'm not really getting any better.  And it's frustrating.  It's frustrating to feel *THIS* tired ALL the time.  It's frustrating to want to do something, ANYTHING, but not have the willpower to do it.  It's frustrating to have my friends and family all progressing with their lives while I feel I'm stuck. 

Even when I get to see them, it feels so hollow.  I basically cannot exert any normal amount of energy without serious repercussions.  I was at a good friend of mine's 30th birthday party this past weekend and did ONE line dance and my heart rate skyrocketed to the point where I thought my heart was going to beat out of my chest.  What's worse is that I pulled attention away from the party and a few people (thankfully) huddled around me and just stayed with me to make sure I was alright.  Of course, Anita the stalwart is there to bring me back to me.

This wasn't even the most egregious of my errors.  Not even close.  That was but momentary.  One of me best friends in the world and her husband had a beautiful baby boy a few weeks ago.  I've been looking forward to this kid since I heard about him back in January.  I wanted to be there the second he showed his wrinkled face (and huge feet!) to the world and I completely fumbled the ball.  I didn't get to see him for an entire week.  I had been feeling so sick that week and I kept seeing Facebook posts of her family and the baby and I just didn't want to bring them down with my womp womp wooooomp.  It took a text message from my friend to remind me how long we've been friends and that I'd better get my ass over there (thank you, by the way) and see this kid.  I cried when I got that text message.  When I read it, it kind of snapped me back to myself for the briefest of moments and I felt good again.  For the briefest of seconds I was Paulash... The good friend.  Paulash, the guy who is there for his loved ones.

The list goes on.  My friend had a 30th birthday blowout at a club in DC and I had to con and scheme to make sure Anita went and had a good time because I didn't have the energy to go out that night and I didn't want to ruin her night.

It's absolutely ridiculous and it makes me so angry with myself.  I'm can't gain any sort of traction at work because I can't keep up anymore because I'm tired ALL the time can am having REALLY serious trouble focusing.  Sometimes, I'm amazed I can recall the things that  I do there.

This is just the lead up to this:  I am scared shitless for my wedding.  Will I have the stamina for it?  Am I going to be the one to ruin my own wedding by having to leave early to sleep?  I think about this all the time. I also have a bachelor party to go to in Canada for Labor Day Weekend.  How am I going to get through all this and survive?  The last time I had a moderately busy weekend, I was immobile for one day and I could barely move the next.  The last thing I want to do is ruin Anita's day.  If anyone on this planet has earned the most perfect wedding, it's her.  I just don't know if I'm going to be able to deliver.

I keep thinking to myself, alright.. There's 2 months left to the wedding, that's plenty of time for me to get back to me.  Nope.  Alright, 1 month until the wedding.  Plenty of time for me to get back to me.  Nope.  We're now at the 4 week mark and I can't sleep because I took my medication too late and it's keeping me up.  What does that mean?  I'm shot for the ENTIRE weekend (not that the hurricane is going to allow for any movement, anyway).  I won't have the energy to do ANYTHING.  But at least I will have put all my thoughts into words, right?

Here’s to hoping I find the strength to do the things I need to do to make the next few weeks as easy and as wonderful and as joyous as Anita has been hoping for them to be.

Yeah, I'm going to give it another go.

So, I think me forcing myself to try and write in certain time intervals has caused much of the writer's block that has plagued me over the last few months. Yes, I'm arrogant enough to say that I have writer's block. Do you people not know me at all?  I think in the future, I'm going to write just whenever I feel like it and not try and confine myself to a timeline.  It's my blog anyway, right?  Like three people read it besides me and that's only because I email it to them whenever I post.

Anyway, I'm here. I'm alive. I've survived a bone marrow transplant from this past February. I should rephrase that.  I'm in the process of The recovery has been so difficult, there are times that I LITERALLY cannot force myself out of bed. My hands are so unsteady and shake like a drunk's (and i can't even drink!) from all the immunosuppressive drugs. Right now, the graft vs. host disease is manifesting itself basically all over my forehead and has moved over my eyelids. I basically CONSTANTLY have a burning sensation on my face. This morning, I couldn't open my right eye until I tore the dry skin from my face. I'm so tired I can't spend time with my loved ones at times. But you know what? I'm alive. When I think about what it was like BEFORE I had this transplant, being admitted for this or that every two weeks or so, I'm thankful that I'm going through THIS instead of that. While it makes it easier to mentally deal with it, the physical ramifications are still absurdly difficult.

So where am I in the world?  I'm still living with my mom.  Yep.  It's true.  I can actually hear you snickering through the internet.  But you know what?  Without everything that my mom did, I don't think I'd be here right now.  Same goes for my sister and of course, I'm still confused as to how my wonderful  pre wife Anita puts up with all this nonsense.  My mother and sister are certainly bound by blood and love, but Anita is solely bound by the latter, and I can honestly say that it makes her the most wonderful person in my world.  I'm not sure if the situation were reversed, I'd be able to go through what she has had to endure and that makes her a much better person than me.  All of them.  My mom, from having us basically squatting in her house so that I can have better access to my doctors for next to no cost, I mean, I know she's my mother, but even that pushes the boundaries of what parents should do for their children.  And I think the best part in all of this is how much it has rekindled...  Hell, KINDLED the relationship between my sister and myself.  We were never very good friends and going through all of this REALLY pulled us ALL together.  I've never really felt close to my sister since I was an infant and I think I've been searching for that connection since.  Sometimes in other people.  I have so many female friends that I treat like my sister because I missed *this*.  I'm glad that in the end, it actually ended being my sister that I love like my sister.  Of course, the relationships I've forged over the years with the women (and the men, too) that continue to be in my life are absolutely irreplaceable to me, but that's a story for another time.  

What about love?  It's of course, Anita. It's all about Anita. I honestly don't know how she does it.  She's lived her life with such health and vigor, how does she deal with me?  Right now, I'm basically allergic to the sun.  Heat is my kryptonite.  I would say that one out of every three times her and I make plans to do something, my health becomes an obstacle.  Just this past weekend we drove down to DC to celebrate our friend Sharon's 30th birthday.  The first night I was OK.  We went out to eat at a swanky Indian restaurant and then to a wine bar.  By the time we got to the wine bar, I could barely keep my eyes open (I had been up since 5:45am).  The next morning, I was shot.  The plan was to go out to the VIP room in a club and dance the night away.  I never even made it out to the club.  Anita and Sharon went out to get their hair done and do whatever girls do when they're together (I'm assuming this is strip down to their underwear and have pillow fights) while Rob and I sat back, watched a little baseball and went out to eat at Ray's Hellburger.  I didn't say anything to anyone at the time, but I was fighting with myself to get things done.  My legs were kind of achy and my chest felt tired.  Well, by the time we got back from the burger joint (which was AWESOME BTW), I fell asleep.  Rob had to wake me up TWICE because I had dozed off as many times.  I didn't even make it to the club.  I got dressed, looked at myself at the mirror trying to conjure up some last bit of strength for one night of normalcy and I got nothing.  I sat down on the couch, again trying to sum up some untapped reserve of energy and found nothing.  I told Rob that I didn't want to go because I didn't want there to be a health related incident and I didn't want to ruin anyone's evening.  It absolutely SUCKS that I have to think in these terms, now.  I did have a bit of a hero moment, though.  Rob wanted to know what to do about Anita, who knew nothing of this.  I told him that I didn't want her to know until he got out there to her and it was too late for her to do anything but go out with everyone.  I just wanted her to have a night out to enjoy herself and not have to tether herself and play nursemaid to me.  Trust me, if anyone's earned a night in the VIP room, it's Anita.  I just don't know how she does it.  Sometimes I feel like I'm stifling her youth and ruining her life by holding her back and I don't know how to get beyond it.  It's mentally paralyzing.  I can't say it enough, Anita is an absolutely wonderful person and a much MUCH better person than me. 

What am I up to?  I've rejoined my job.  Yep.  Well, sort of I guess.  Right now, I'm working part time in the office and part time from home.  It kind of sucks, but I don't have the endurance to be able to make the drive to work every day.  And speaking of job, my word have they been accommodating.  I'm not sure if it's solely because I'm protected under the Americans with Disabilities Act, but almost EVERYONE has been super understanding with what I can and can't accomplish and has been basically bending over backwards.  From my immediate boss all the way to the top (and includes other departments).  They even got me gifts!  People from my job!  Mike came to visit me one day at the house and he brought with him MLB '11 The Show as well as a gift card provided by many of my colleagues and coworkers FROM OTHER DEPARTMENTS.  When he handed me the gifts, I had to struggle for a bit to fight back the tears (which was greeting by Mike scolding me for crying and declaring, "Really?  You're gonna cry?  Really?...  It's just his way).  And while we're on the subject of Mike, has there ever been a person that has shot up the ranks of people in my life so quickly?  I've never forged such a great friendship in such a short amount of time, especially when I have to deal with work stuff with them.  It's absolutely incredible.  Let me say it this way:  The number one non-family related hospital memory for me will always be when Tom drove down to see me last minute when Chrissy was afraid that she was too sick to see me.  Tom came drove down BY HIMSELF basically on a whim.  I was rude enough to fall asleep on him a couple of times and he has YET to complain.  But my number two memory?  Mike drove down to Philadelphia WITH HIS ENTIRE FAMILY.  It was absolutely incredible.  His wife, his father, his sister, and his wonderful mother ALL came down to visit me. THERE ARE PICTURES! I mean, who does that for their coworker?  Mike's an incredible friend with an incredible family and I'm glad to know him.  Anyway, I digress.  I have been trying to get my footing back at work and it's been a bit difficult.  It's funny, I've been at this company for 4 years... The first three and a half, almost NOTHING changed.  I'm out for six months fighting for my life and EVERY department decides to up and change EVERY aspect of their tasks.  While I struggled to catch up the learning curve, I think (especially with what I'm going through) I've gotten to a place where I'm at least comfortable with my amount of knowledge.  Now if I can just regain my credibility (or gain it in the first place) and show up with some sort of consistency (I've already had to call out twice with GVHD related complications).  I'm hoping that with their continued support and as I continue to heal, I can get back to being my former productive self.  Hopefully.

and finally and most importantly, what am I looking forward to?  It's simple; EVERYTHING.  Before I had my stem cell transplant, I couldn't plan ANY part of my life.  I was living ER trip to ER trip.  Any time my life gained any head of steam, it would abruptly be derailed by some medical disaster that could and has set me back in terms of years.  This always loomed over me in everything that I did.  There were periods of my life in which I became obsessed with whether or not I would make it beyond 35.  All of that is behind me now.  While the recovery feels difficult, I'm full of  hope.  Maybe for the first time in a decade.  In the short term, I"m really REALLY looking forward to OUR WEDDING!  I can't believe it's less than two months away!!  It feels as though we were just going around looking for a place to have the damn thing!  And now... I just can't wait!  What an amazing celebration it will be to wed the one I love in the company of the people I love to begin a life that I didn't know I could have.  I know you might think I've had a bad break, but I've got an awful lot to look forward to.

Day+26: Not such a good situation

I can’t really hold up on the wit right now because I’m in excruciating pain.  Coupled with not sleeping for about 2 nights in a row.

Everything was going great up to a few days ago.  In fact, I was supposed to be going home tomorrow!  Can you believe that?  I was so looking forward to it.  Well, then a couple of days ago, I started having pain my abdomen on the right side.  It is possible that I had an infection in my bladder, however it is also possible I passed a gallstone and because of all the pain medication I didn’t know it was happening. We’ve gone from me possibly going home tomorrow to not knowing what the problem is.  All we can be certain of is that I’m in a lot of pain…

Thank you everybody for your continued love and support.  I couldn’t do it without you guys!