Thursday, December 17, 2009

Just because I’m losing, doesn’t mean I’m lost; doesn’t mean I’ll stop

I can’t even begin to describe the amazing clusterfuck that is my life right now.  Honestly.  Until last night, I really had very little knowledge of what exactly myelofibrosis is.  What it does to the body; what it does to one’s life.  You know what?  Right now I feel like I’ve lost.  Right now, after reading what other’s have gone through and what what others are going through, I feel… Hopeless.
It’s not like I’m trying to be this way.  And it’s certainly not for the effort of the people around me.  It’s kind of my mind just taking over.  I mean, I’m not a betting man, but if I was, would I bet on me?  Of course not.  My life has been absolutely riddled with bad luck; there’s certainly no reason for that to stop now, right?  But as I said, it’s not for the efforts of the people around me.  Especially my sister’s and my mom’s friends.  My sister has been basically attached to my hip through all of this and that’s somewhat of a surprise and something that I very much needed (though I would never admit that to her face).  When I was carted off (by ambulance) to the emergency room, three different sets of my mother’s friends were there for me which is incredible.  Sebika Mashi actually came over and called 911; Saikatda met me in the ER, and Chumki mashi drove me home (and gave me the yelling that was coming to me).  With my mother visiting her family in India and while  miss her presence immensely, these people have filled in brilliantly while I settle for long distance phone conversations with my mom (for now.. She’s finding her way back to NJ probably as we speak).  Friends of mine that don’t let me brood too much and give me pep talks.  Co-workers visiting me and spending time…  Even Anita, with her finals these past 2 weeks has dealt with this as much as she possibly can.  I would be remiss if I didn’t mention the fact that my friend/co-worker Mike let me steal borrow  his copy of Madden 10 to have at home.  Sure, it sounds silly, but having a distraction (that lasts HOURS AND HOURS) really helps my mind from imploding.  Better to think about screen plays rather than my next blood screening.  I really commend everyone involved for their efforts because I know for certain that I don’t think I’d have the strength to do the same in return.
But even with all this, I feel alone.  I feel helpless.  Madden, visits, and phone calls are all fine and dandy, but nothing is making me better.  In fact, at this point, nothing can make me better. 
This all came to a head on Sunday night.  In search of normalcy, I went to my friend Tom’s house.  Him, Steve, and I were to watch NFL Red Zone (as us men do) and enjoy the day watching football and Scott Hanson not pee while directing traffic on the channel.  It started out just fine.  I got to Tom’s (early, believe it or not!) and we sat around and bullshitted.  We ordered buffalo chicken pizza and prepared the chips and dip (read: opened the bag and container).  It was perfect.  It was everything I needed it to be.  The three of us enjoyed the 1:00 games like any other Sunday of any other year.
Oh, but this wasn’t any other Sunday and this is not another year.  Almost just as the 4:00 games started, I felt a little fatigued.  Being quite the veteran at gauging my own levels of energy, I figured I should leave before I become plain useless (Mind you me, before this night, useless basically meant “so lazy that I did not feel the urge to get up, talk, or basically do anything").  Now, we were pretty much doing this anyway, but I figured I wouldn’t want to drive home that tired so I took my leave.  Slapped Tom on his hand and made my way out the door.
Still felt pretty normal.  Then about half way home, I started to feel REALLY tired.  This is not completely abnormal to me.  I thought nothing of it to the point that I called Anita to whine about it.  Nothing new here, I call her to whine about absolutely nothing all the time.  In fact, calling just to bother/annoy her is really one of my favorite things to do.
By the time I make it back home, I’ve felt fatigue like I’ve never felt before.  I felt like I couldn’t left my leg enough to step forward.  I walked in the house and could barely walk.  I stumbled over to the couch and literally collapsed.  I actually tried to get up and I literally couldn’t.  I can’t describe how that feels.  For your brain to WANT your body to do something, but your body not being being able to carry it out.  It’s an absolutely frightening paralysis.
Cut to the chase:  Ambulance takes me to Robert Wood Johnson and we discover that my hemoglobin has dropped below a threshold at which I am at least functional.  Can you imagine that?  I didn’t have enough blood in my system to move.  Think about that statement for a second.  Realize that it’s not any kind of figurative language.  I could not move.  Send shivers down my spine just to type it.
My sister, my brother in law, Saikatda, and the Basus all spent time with me at the hospital.  My sister came all the way from South Jersey and stayed until I was admitted (at around 12:30).  The second she left the room, I started at the dry erase before me informing me of what room I was staying in, what my nurse’s name was, and what my nurse tech’s name was and wept.  This was everything I was trying to avoid.  This was everything I was trying to deny.  With everyone around me warning me to be cautious and to act within my situation while I was running around pretending to be “normal”, I actually stopped believing I was sick.  Hello Paulash, it’s reality.  I know we haven’t seen each other in some time, but I thought I’d surprise you.
A transfusion and an endless wait for an evaluation by a team of doctors later and Chumki Mashi took me home(I didn’t get to leave until about 5:00pm… Just because I was waiting for doctors to see me).  She wanted me to stay at her house, stay at my sister’s house, stay anywhere but at alone.  But that’s all I wanted.  I wanted to be alone.  To sit and realize my new reality.  A seemingly endless battle with illness and fatigue punctuated by a few respites of normalcy.  It’s my life or rather, what’s left of it.  Guess there’s nothing left to do but “make the best of it”.
I wouldn’t wish this on my worst enemy.

1 comment:

  1. Hi Paulash, I know how you feel, my husband is going through the same thing, being diagnosed at the age of 39 with myelofibrosis. But there is hope, and that`s a bone marrow transplant (BMT). Yes, it sounds scary, but it`s an option with good results, we are talking about a cure here. So do not lose your hope. If you want you can read about us over here:

    http://myelofibrosis.wordpress.com/

    Good luck and all the best,

    Esther

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