Friends to the end.

So, I had a little bit of a scare over the last two days.  My great friend sent me a text that said "This might be the Vicadin talking, but I kinda want to have a pillow fight with you"  At first, I really dismissed it.  The next day, I read something else involving Vicadin again and I started to worry.  I immediately started thinking that his move to PA was just too much for him and his looking for solace in all the wrong places.  I was prepared to tell him, "Friend...  Find the direction of the nearest border and RUN!  RUN for your life as PA is clearly swallowing you whole (and for men our size, that's certainly not an easy task).  Lucky, it turned out to be nothing nearly as serious and when I finally spoke to him, I scolded him for not telling me he was on it and his punishment would be that he'd have to spend a weekend with the boys starting this Friday.  So in the end, it worked out for everyone.

It worried me that I thought he was doing something so stupid and he didn't alert me.  Everyone knows I make sure he's aware of every stupid adventure I attempt... I mean, someone's gonna have to back me up, right?

I always considered myself (for what it's worth) a considerate friend if not a good friend.  I'm always trying to get everyone together and actively try to keep our group together even after 12 years have passed since it formed.  I try involve everyone, make sure we are all aware of what everyone's up to (the public stuff)  These are things I think about.  Things that drive my day.  Making sure that the family I created for myself remains as constant as possible for the rest of my life.

You see, when my parents came to the United States, they didn't come with a lot of family.  In fact, they didn't come with ANY family.  A cousin of mine and his mother and father were a part of our lives for a little bit, but that's really it.  The only connection I've had to blood relatives I've had were our bi-yearly trips to India in my youth and arguably the 2nd best year of my life, 2004 when I spent the entire year in India, living amongst my family.  With the lack of family surrounding me, I tend to see my friends as my chosen family, and in most instances where emotions are concerned, I really do consider them my family.

So, losing someone that I would consider that good a friend and lowering them from that status is not a decision I come to lightly.  Especially with the women in my life.  Since becoming an adult and really establishing those I care about, I would say my friendship attrition rate has been absolutely admirable.  Losing friends is just not something I do.  In fact, I feel as though the troubles we've all been in has done nothing short of brought us closer.  And don't get it twisted, keeping REAL good friends at THIS age is difficult.  Life just gets in the way too often.  You are relegated to text messages and scheduled outings as opposed to the 6:00pm call you would get when you were 21 that went something like, "Dude, I am so hungover from last night, we definitely need to get drunk so I can get rid of this headache... You're driving."  And, BOOM!  When you're 31, that phone call has to come about 3 weeks in advance MINIMUM if you want more people involved and festivities end 3-4 hours shorter than you're used to.  And throwing up at the end of the night is NOT a good thing. 

But I digress.  So, it's a fight to keep good friends and I pride myself on my record.  And since my friend are so close and I'm not really accustomed to losing them, when I actually DO lose one, I feel absolutely devastated.  Unfortunately, despite much effort on my part, the last two years I've had to detach my heart strings from two of my favorite friends.  Friends that I've had for quite some time (double digits each) and both whom I sincerely loved like they were my own family.  One of them....  One of them draws tears from my eyes as I speak.  She was the Abbott to my Costello.  The Wetteland to my Mariano.  I haven't had a meaningful conversation with this person in probably over a year and I can't think of a day that goes by that I don't think of her.  Both of them really.  The other one basically shaped who I would be as an adult when she met me.  She introduced me to music.  My god.  I just realized that.  For how many times some silly song felt like it saved my life, it was at least a little thanks to her.  They've taught me so much about life, showed me so much of myself, and helped make me so comfortable in my own skin, I HATE that we just simply grew apart.  It would be so much easier to accept if there were some massive, existential fight and that was it.  But that simply just was not the case.  And for the love of Jeebus, I tried.  I swear to you, I tried hard, and I tried for a long time.  Ask my wife.  I tried so hard over the years to keep our friendship at an acceptable level, but unfortunately, it certainly takes two to tango.  There are only a certain number of times that even my massive ego can take an unreturned phone call, an ignored text, or even the lowly dismissed FB post.  At some point, I have to cut my losses and drop the dead weight and I hate it.

You know what, I thought that if I wrote about it, it would make me feel better, but it doesn't.  It feels awful.  I draw so much strength from the people I love that it's felt like a part of me has been missing.  But I trudge on.  I cherish the friendships I have been able to maintain and keep going forward.  It's all I can do.  It's all any of us can do.  I really had much more to say about this, but my heart hurts and I must stop.

Thank you for everything you are to me, even if you aren't there for me to be it.

I'm the Only Bandyopadhyay of my Lineage Left in this Country

So,  I know it's been a while since I've written anything, but let me explain....  It's been a weird couple of months.

My father died last month.  Yeah.  Exactly.  It was such a strange thing to hear.  It was the middle of the day, I was just sitting at home and reading (read: watching TV), and my sister calls me.  This is not abnormal.  Since the time that my sister and I got closer we talk a few times a week about nothing.  I really thought nothing of it.  When I answered the phone, there was no chit chat.  She just dropped it on me.  As soon as the words came through the earpiece, "Dad died yesterday, " I could feel my pupils enlarge.  I stared around for a moment in silence.  I didn't (and still don't) fully know how to react to the news.  The man has been absent from my life for the past 25 years.  The last time I spoke to him in 2004, he was busy saying terrible things about my family to which I responded that if he continued, I would take no part in the rest of his life and would not perform my duties as his only son upon his death.  That conversation is the first thing that came to me after my pause, but more on that later.

I was so conflicted.  The man was basically a stranger to me.  I know the evils he had done.  I have some vague happy childhood memories of spending time with him.  I remember his voice.  I remember the specific way he pronounced my name.  I remember that he used to call McDonald's McDougal's for no real reason.  But those memories are so distant.  What I really remember?  What I remember about the man that is my father is the pain he caused my family.  The pain he caused my mother.  I have such vivid memories of my mother and father SCREAMING at the top of their lungs when I was young.  I would be so afraid (I was <5) that I would hide in my father's closet until my sister saved me when it was over.  I remember how much he revered having a son and how much he basically ignored having a daughter.  I remember that he desperately wanted us to call him "Bapi" or "Baba" but I'm careful not to even refer to him as "Dad." I remember that my sister, my mother, and I would walk into my room (which was now his permanent dwelling) and more than once was screamed out of there.  I could only get a gimpse of his state.  I was too young to understand why there were milk jugs of (what I thought was) lemonade surrounding his bed.  Why was he always naked?  And why did the room ALWAYS smell so bad.  For a four year old, this is all too much to process.  Only NOW reflecting back am i able to decipher this scene brought forth from my memory.  I remember that when he used to visit me, I would always get a trinket or toy.  Even at that age, I felt like I was being bought and knew better.  Strangely, I remember his enormous white Chevy Caprice with the Cookie Monster sticker on the back bumper. 

That is really all I have.  Sure, I have a few positive memories here and there.  I remember right after The Karate Kid came out, him and I would hold karate tournaments in our living room.  Ha.  Maybe that explains my obsession with that movie series.  Or maybe it's just one of the greatest movie franchises in the history of movies.  Either way.  I remember our MacDougal trips in which I basically had free reign over what  I ate and how much tim time I spent using the amenities they had available.  I even vaguely remember him helping me with some math homework (boy would he be disappointed in the awful mathematician I've become).  For the most part, these tattered memories are all I have of my father.  An ocean of negativity dotted with small buoys of kindness and an inkling that on the inside, he may as well have been a good person.  If only THAT person one the conversation in his head every day.

Unfortunately it didn't and by the time I was 6, he was basically gone from my life.

I'm going to skip ahead in my life as to skip the more important questions that arose because of my father.

I made a lot of mistakes when I was trying to grow up.  A lot.  Probably more than my share.  Every time something would go wrong, someone would always murmur between their breath, "he's just like his father".  Sometimes if my behavior was bad enough, someone made sure I head the comparison to my father.  I don't know what they were trying to accomplish.  Maybe trying to get me to stand up and 'prove them wrong', but that's not what happened.  Every comparison to my father sunk me further.  That combined with OTHER external forces acting against me that at the age of about 18 when a family member climbed over a second story balcony to break into the house and instead of unlocking the front door to let my mom in, he spent the next approximately 4 minutes kicking down my locked door, finding me sound asleep (I had been quite ill that week and took some Nyquil to help alleviate some symptoms and was SOUND asleep), analyzed the situation and decided that the best course of action was to kick me so hard in my sleep that I wake up in a panic and immediate urinate on myself because I didn't know what was happening.  The funny thing is,  when my wits returned to me but before I recognized my assailant, my first thought was "What did I do?" instead of "Are we being robbed?" or "Has an insane person broken into our house"  I'd become so accustomed to this sort of treatment, I assumed it was my fault.  Anyway, I digress..  After the night that I got the shit kicked out of me for basically being sick, half asleep, and accidentally locking the door leading to the garage with the lesson of the night becoming "Paulash needs to be more aware of his actions", I guess I decided that the murmurs and backtalk must be true.  I always worried that I would not amount to anything because of the unique combination of biological AND environmental barricades and at this point, after that night, I confirmed it in my own head.

This was the legacy of my father.  Or at least, it could have been.  I spent years trying to reconciling this with people trying to tell me how smart I am and blah blah blah, but nope.  I was destined to leave this world in a blaze of unglory.  Couple that with my mysterious illness and I figured I woudn't make it beyond 35.  I told people this.  I lived my life like this.  Indulging in pointless 'now' pleasures, not preparing for tomorrow.  At age 31, I am approaching my old doom's day line authored by my father and the genes he past on to me that guaranteed my failure.

Of course, that's not my life now.  In fact if you ask my wife, she'd probably tell you that how far I plan into the future and how much I concern myself with  our happiness in terms of years creeps her out a little (we are only recently married and I already negotiated the names of our potential children).  What made for the dramatic turn around?

A friend of mine saved me and she probably doesn't even know it.  I'm not sure I ever thanked her for it.  While on a downward spiral, wallowing in my own self pity and wondering why I was subjecting myself to all these testing if I'm destined to just be a fuck up..  Why?  She answered me very calmly that what I become is essentially my choice.  But I'm too much of my father.  She then inspired me, internally.  She likened the traits of my parents into basic baking ingredients and said that adding as much of each part of my father and mother to create me in the way I want to be.  Sure I understand that was oversimplification and that it does nothing to explain heredity and whatnot, but for the first time in my memory, someone told me that I could actually take aspects of my father and STILL BE WHO I WANTED TO BE.  This was the first time I had ever heard that.  It was absolutely liberating.

From then on, I was on a mission to better myself but then was derailed once again when I fell majorly ill about 5 years ago.  I'm just NOW climbing out of that hole.  As difficult as it has been, I'm optimistic.  I have all the tools in my possession to bring my life to where I think it should be.  I gave up some time to illness and some more to idiocy, but I plan on regrouping now.

I declare that in ten years, I will be where I want to be in every aspect of life.  Sure I'm farther ahead in some aspects and not others, but in 10 years, I will have taken our family name to heights that I want to see it.  Our family name in this country will garner respect, love, and compassion.  People will count on us because we are worthy of their commitment.  Ten years.  That's not a lot of time so I better get started.  You should stick around, though.  It's going to be one hell of a show.

Shit just got real

Today was the first Father's Day since I was 5 years old that I could l celebrate with someone that can legitimately call me son.  Not only that, he's one of the best dads I've ever met.  My father in law has COMPLETELY devoted his life to his children.  And what did I do?  I stayed home.  I was too sick to go anywhere this weekend but made sure that Anita went.  I felt so terrible.  I feel so isolated by all this.  I was so ashamed, I didn't even call him to wish him a happy father's day.  Way to get off on the right foot, Paulash.  Ugh.

This disease is taking my soul.  Slowly and painfully.

When great is just being normal.

While most people are looking for something special to punctuate their lives, at this point I'm just looking for a sense of normalcy.  I'm looking for a brief respite from fighting to just feel normal for a change.  The few chances that I get at it make me feel great.  The main problem is happens to be that the opportunities to feel like me are running few and far between.

On a normal day, I wake up at about 9:30 and take engage in my morning ritual.  Most people have the SSS (shit, shower, shave), I have an added S for Self medicate.  I throw on my "i feel sick" robe and sit down by our TV.  If I'm feeling extra sick,  I climb back into bad with my beautiful wife and see if I can avoid falling into her trap.  You see, once Anita senses that I am back within her reach, she sets the trap.  She'll have me wrap my arm around her and she rubs my head.  If she's able to execute it right, we're bypassing getting up, eating, getting ready, and going straight to 5 hour nap mode.  She's so evil!  She knows how much I hate wasting away in bed but she doesn't care, she just wants the snuggle for her own agenda!!!!  But I digress

Normally, after I wake up , I flip between the news and Sportscenter.  This way I know if there are attacks on the way from Iran or Mike.  Once I am versed on the sports and news of the day, I get ready to... Wait.  That's basically what I do.  Isn't that miserable?  I basically have to stare at the clock to know when to take my pills, when to awake, when Judge Alex comes on and THAT'S it.  That's the vast umbrella of my responsibilities.  Aren't I a bit more than a watchgazer?  Just waking up, spend 15 hours doing almost NOTHING of consequence, and then here my phone beep to let me know it's sleep time.  This pattern has seldom deviated from and it seems as though every time I do deviate, while the activity feels great at the time, depending on the activity I might suffer for it for months.  This routine is seldom broken and each time I try to and fail, anger, frustration, and sadness well up in me.  I've been going through this stuff for more than a year now, How is that possible?  Aside from this disease (and now the weight the cure has burdened me with) afflicting me on and off for the last two years, I've really been a relatively healthy person.  It's just that when things go wrong, it seems a lot worse.  When most people push them self to the limit, they get better and their body's get stronger.,  i have the exact opposite effect.  My body absolutely fails and I regress.  I get sick.  I'm bedridden. Worst of all, I'm mentally annihilated.

But now...  What I'm going through now is completely unprecedented.  I've never had so people either say or imply the word 'setback' to me.  Sometimes I become utterly frustrated with what seems to be the fact that every time I try and put a date on when I'm going to be at least feel well enough to go back to work, by body reminds me i'm not in charge.  Nothing makes a recovering patient feel less in control this circumstance.

I guess my biggest worry is just when.  When am I going to feel better?  Everyone keeps warning me not to put any timelines and let my body heal at its own pace.  I am also scolded about going back to work last year against better medical advice.  I'm just sick of it.  I'm sick of seeing everyone else living and me just hanging around.  Facebook has really destroyed me.  I see everyone so happy.  Spending time with their loved ones.  Traveling to all different places.  I WANT TO DO THAT stuff.  I don't know, I guess I'm just losing hope.  I'll have to find some somewhere.  blurgh

Review: Drift: The Unmooring of American Military Power

Drift: The Unmooring of American Military Power by Rachel Maddow

My rating: 4 of 5 stars



Does it count as reading if Ms. Rachel Maddow is reading it to me herself? Whatever. I got a free trial from Audible and chose to listen to Drift and have been loving it. I thought I would be reading a book about the expansion of executive powers over the last three decades. So far, through chapter 8, all I've really come away with is that Reagan was a TERRIBLE TERRIBLE president for the little people as he set many MANY bad precedents. I'm always on board for some Reagan bashing.



View all my reviews

Thank goodness for Pushpita Bandyopadhyay

I have basically been immobile the last two days.  I have been trying to be more mobile and active to try and get my body ready to get back to work.  In this effort, I went to a game night at my best friends' house on Saturday night.  I was very conscious of how much energy I was trying to conserve and what food I was eating to maintain myself.

I didn't even see it coming.  The next two days were filled with so much pain and fatigue, I could barely get out of bed.  I have been so much pain that I've basically went through my pain killers.  I'm done.  With REALLY strong narcotics.  This is the longest episode of prolonged pain that I've ever had.  I need help just to get up.  I'm basically a mess.  If I'm in excruciating pain tomorrow, I don't even know I would be able to do.  It's not like the doc could call in the prescription for narcotics.. That's illegal.

I don't know what to make of this latest episode.  My hands are shaking harder than they've shook in a while.  My joints CRY OUT  in pain every waking minute. 
I feel so listless.

I've been trying to detach myself from what's going on, but I find it difficult.  I'm trying to frame what I'm going through as an experience as opposed what I am.  But I'm finding it difficult.  And the more I think about it, the more I think I've changed for the worse.  Some of what made me ME is gone and I fear that I will never gain it back.  Worst yet, it's been replaced by this listless, joylessness.  Just marking time and not enjoying.  Not cherishing time with loved ones like I should.  I would say it's a funk, but it's been going on for far too long.  The only things that make me feel REALLY happy inside right now are my sister's kids.  My god.  Just to be around them when I can.  To have them sit in my lap with their scrawny little arms wrapped around my neck.  To have Ella ask me about the world (and subsequently have me lie to her to make sure she stays away from boys until she's at least 30).  Or to see how imaginative Cameron is when he plays.  It is what life is supposed to be.  It's why I understand why my sister is the way she is.  She doesn't wear expensive clothes.  She doesn't go out.  She doesn't cook too often..  She sometimes has issues with her job.  But to come home to those two every day, I'm sure every day might not be as great as the time that I have with them, but I can bet you that if you ask her, she would tell you the good days ALWAYS outnumber the bad with her family.  What else can you ask of life?

Of course, what makes me most happy is my wife.  I can't deal with the way she looks at me and caresses my face.  I've become such a wretch.  Such a shadow of the man I know she intended to marry, but there she is, always ready to help me out, or to say I love you, or to just hold me.  The love I see in her eyes  and embrace every day is what keeps me going to the next day.

And thank goodness for my mother.  This past Monday was absolutely impossible for me to deal with.  I called her at noon and she literally stopped what she was doing, came over, took me to my doctor's appointment and then helped me buy some groceries for the house (we were missing some essentials).  I don't know a lot of moms that could be on call within the hour.  It meant so much to me to go to that appointment and I was afraid I'd have to miss it.  She really savd the day.

I have another appointment on Thursday.  Let's hope we can fix some things.  I can't keep going like this.  I can't keep existing like this.  I need to feel.  I need to experience joy outside of my immediate life and I don't know how to turn that back on.  Am I depressed?  I can't imagine someone with my attitude is depressed, but then again.. WTF do I know.

Ugh.

Up and Down

You know, I was never one for roller coasters.  I mean, I've been on my share of emotional roller coaster relationships , but that's a blog for another time in another circumstance.  I'm talking about physical roller coasters at amusement parks.  I've never really liked them as I have a fear of heights and I don't really like not knowing what's going to be around the next bend.  Funny enough, I think it's for these same reasons that my wife actually REALLY ENJOYS roller coasters and will stop at nothing to ride one if she's within visual range.  She is a rock and is afraid of nothing.  I guess that makes me the spineless wimp that's afraid of everything and we come together because opposites attract.

I digress, anyway.  This photopheresis thing seems to be working, but the results are kind of like rinding a roller coaster.  I've been to treatment five times.  One time, I felt so good that I actually went to the treatment completely alone.  Drive myself down to Philly and back without any problems.  Another, earlier time I fell asleep before we even exited the parking garage I was so exhausted.  I ended up sleeping for the rest of that day and into the next morning.  Completely out of character for me to sleep late.

So, now my body is a bit more accustomed to the procedure, yet the results are still somewhat like riding a roller coaster.  Overall, I would definitely have to say that I feel better.  I feel much better and what's more is that I feel optimistic.  I think, as slow as it's going, I'm getting to a better place and that's all I want.  How crazy is it that I'm living my life right now just to get back to work?  Who knew being a semi-productive member of society could mean so much to someone.

Unfortunately, with the way the treatment has been going, the after effects have been somewhat unpredictable (like a roller coaster).  Last week, after BOTH treatments, I felt fantastic!  Great enough to see some people that weekend and have lunch with Mike.  I even called my boss to let him know of my progress (a phone call I've been avoiding as to not have to convey such massive failure).  This was looking up.  I was starting to see people.  My life was slowly starting to take shape again.

Then this week's procedure hit me.  The first one was fine.  I came home and was a bit tired, but certainly not OVERLY fatigued.  After Wednesday's procedure, however, I was completely annihilated.  I've been reeling for two days now with aches, pains, and overwhelming fatigue.  My hands have been tingling all day like they are not getting enough blood and that makes me nervous. 

I'm hoping that by tomorrow, everything is at least where it was.  I have a big weekend coming up and I'm nto going to let some GVHD ruin it.  Right?

Ugh..  When will this all end??  When can I get back to being me?

Can you believe that she's been with me for five years?!?!?

So wow. Anita and I have crossed a milestone... We have been together for FIVE effing years. Anyone that knows me knows that being around me as much as she has for five years, she deserves some sort of award. I mean.. FIVE YEARS... That level of intimacy is Joe LaPlaca territory.. With slightly less taint tickling (in her defense.. That man knows how to tickle some taint).

All jokes aside, I've never felt so loved, so happy, so at peace with myself as I have since we've been together. And while this is OFFICIALLY the last time we will be celebrating our dating anniversary, I just wanted to recognize how amazing the last five years have been.. With a little help from our friend Elton John...

It's a little bit funny this feeling inside

I'm not one of those who can easily hide

I don't have much money but boy if I did

I'd buy a big house where we both could live

If I was a sculptor, but then again, no

Or a man who makes potions in a travelling show

I know it's not much but it's the best I can do

My gift is my song and this one's for you

And you can tell everybody this is your song

It may be quite simple but now that it's done

I hope you don't mind

I hope you don't mind that I put down in words

How wonderful life is while you're in the world

I know that it hasn't been so easy lately, but I know you believe when I say that you are all my reasons.  Everything I've been trying to do is for you and for us and the future.  I've loved you for so long, I don't remember myself as anyone else but the person so deeply in love with you.  And that ain't bad. Stay black!!

Happy final April 10th!

Not so Great Expectations

I had an appointment with my phyisical therapist today and we had a conversation about expectations.  This guy, his name is Jim and he's a bit older than I am, but we have similar ideologies and we have some great conversations about pop culture and politics.  He's very good at his job and he's good ABOUT it.  He doesn't make me feel like I'm at a physical therapy appointment.

Anyway, he spoke to me today about expectations and how I should start thinking about when I can transition to an outpatient facility as I become more independent.  I meet his request with my normal "yeah."  When he pressed and asked for a specific answer..  I froze.  Expectations.

Expectations.

That word has been swirling around my head for months.  What everything is expecting of me.  What I'm expecting of everyone.  What my expectations are for ALL this.  What I wanted to tell Jim when he asked me was, "I EXPECTED this to be completely finished by my 1 year anniversary...  But here we are almost 2 months later and I can barely take care of myself as various ailments have taken grip upon me.  How can gauge my expectations when I don't know what's around the next corner?  The only expectation I have is to wake up in the morning and meet the challenges of that day.  I can't plan the future because it's not guaranteed.  Not anymore.  Not for me.

Boy, that sure sounds depressing.  And now that I'm being completely honest, I'm spiraling down pretty quick. I think with my own psyche completely out of whack with all that's happening and with the amount of Prednisone I'm taking on a daily basis, my mind is a slurry of emotions just waiting to bubble over.  I've met various situations with unwarranted tears, inapprorpriate anger, awkward laughter.  I've been having dreams that I would be embarrassed to describe to a psychiatrist.  My daydreams involve my own demise (not at my own hand).

I don't know where my mind is going, but it's going there without my permission and it's put the pedal to the metal so to say.  The worst is that Anita is getting the brunt of this.  I've always been an little off kilter with my emotions since she's known be but now, oh man, now she's just sitting at ground zero.  I feel SO MUCH STRESS.  I feel SO MUCH DISAPPOINTMENT.  I feel SO MUCH right now.  I'm just a ticking time bomb and I don't know how to diffuse myself.  Do I complement my drug box with some Xanax?  Is that really the answer?  MORE pills?  Aren't the number of pills I'm taking partially to blame for this mess in the first place?

I'm having trouble sorting all these things out.  And as much as I wish I could focus 100% of my attention on this, I feel like I've got 1000 other things that need a good amount of attention as well.  I need to get the eff out of dodge.  Seriously.  I need to grab my beautiful and as understanding as she can be wife by the hand and just get out for a weekend and sit down in a town that isn't ours and unwind.  I need to not worry about our finances.  Not worry about how much money is gone from our FSA account already.  Not worry about when the next Photoferesis appointment is.  I need to break life back down to its essential elements.  Me, her.  Right now, that's all I need to survive.  Let me focus on THAT and make that happen.  Then I can come back and start worrying about expectations.

Fucking Myelofibrosis.

Against My Better Judgment

So it has long been my best friend Joe's thought that our phone conversations should be turned into podcasts that should be shared with the world and labeled something to the effect of "Comedic Thunder" or "Guido Dots" or something like that.

Of course, in the interest of NEITHER of us getting arrested for some of the absolute awful stuff that falls out of our mouth over the safety of the security of our phone connection, I remind him it's smarter that these words stay between us.

That being said, I feel like I need to share this one story that unfolded slowly over the past few days.

Let me set the stage for you:

A few days ago when it became apparent that I would partake in this procedure of photoferesis, Joe was obviously one of the first to know.  Now, I'm sure I explained it to him quite intelligently, but for some reason, when I said "it takes my blood, exposes it to sunlight and the blood reacts to the UV light."   For some reason, his response was, "Oh!  I get it.  You go to the doctor and go through a procedure where you turn sunlight into semien.  I get it.  We all knew it was going this way eventually."

It broke the tension I was feeling.  It was funny.  Come on.  It was.

Anyway....  Fast forward to today at 8:00.  My mom has driven me down to the center but at the first sign of blood being taken out of my arm, she BOLTS from the room like a thief at a police HQ.  She did well getting to my house so early and taking me... Poor girl just can't handle the site of blood.  Not a big issue, I had my trusty tablet queued up on a cheesy movie and I was ready do to.  8:00am hits and I hear the chorus from "Crazy Love" by Aaron Neville playing from my phone..  What the heck is Joe doing calling me so early in the morning?

"Yo...  Joe..  What are you doing calling me so early in the morning?"

"Fuck you... I'm up.  You're up.  That's my new rule."

"I'm glad I was consulted on this new rule."

"Oh please, like you consulted me on your I'm gonna whine all the time because I'm sick all the time rule."

"Touchy,.  I just got hooked up to all the machines, the photoferesis thing is about to begin."

"Oh yeah, they're ready to turn that sunlight into siemen, eh?  I'm positive this is going to make you feel better."

"I really hope so, but I can't find my mom!  She's been missing for like 40 minutes!"

Joe's final response, "Well DUH!  Someone's gotta go out there and wrestle up that siemen!  It doesn't come from nowhere!  Everyone's gotta do their part to get you back!"

I seriously laughed for the next five minutes.

Not for nothing, and he's going to resent that I'm using him as an example of what's going right...  But this is the kind of support I've been getting and it's been great.  I feel like I've been completely terrible to my friends over the past few weeks.  It has been met with nothing but understanding and kindness.  I've been treated by my nearest and dearest as if NOTHING is wrong and whether I cancel engagements with them or not, they've just been treating me like everything is alright...  PLanning the next event or making fun of my mother or whatever it is we normally we do.  It gives me a sense of normalcy to grasp on to as my own normal drifts in this sea of medication, emotion, and bloating.

I will say that after the treatment, I felt wept out, but I felt good.  And after I rested, I felt great for a good cross section of the day.  At the end of the day, though...  I still fell completely fatigued... But I'm hopeful with this procedure.  For about 5 hours, I felt REALLY good.  Not something I could say for a WHILE.  plus, I got to wear those AWESOME glasses.  Oooohhh  Yeahhh...

Here we go again tomorrow!

Here we go again.

So, I've qualified for a semi-experimental procedure to help mitigate some of the symptoms of GVHD.  It's called Photoforessis and my first appointment is tomorrow @ 7:00am.  I can't express to you how nervous I feel.  I'm not nervous so much as to the particulars of the procedure itself, I am worried about it not working.  I'm just tired of going through procedures and coming out on the other side feeling like this.  You know?

I figured I would let some random grumblings get out into the world before I start this journey to being ACTUALLY better and returning to being at least a (somewhat) productive member of society, a better friend, finally attempt to be a husband deserving of someone like Anita.  Oh, I hope so.

First...  So, I've become extremely reclusive.  Did you ever think in a trillian years that you would associate THAT word with me?  Recluse?  Paulash?  Really?  I'm supposed to be the anti-recluse.  The recluse's worst nightmare (ahem, Mike).  Well, a few weeks ago, my doctor recommended that what might help me feel better emotionally would just be to go out and spend some time with people that I know and care about.  It was supposed to help 2 fold; one I would gain some stamina outside of the house and two, I would feel better emotionally being surrounded by my compadres. 

Out of the 10 engagents that I had planned with my friends, I canceled 8 of them.  When I was sitting and discussing this with my friend this afternoon, I couldn't believe that number. When have I ever been known to cancel on 80% of my plans?  Have I ever had a stretch like this?  Ever?  Lucky for me that these people have been around for as long as they have or else they'd flake out on me and my life as I've been flaking out on them.  The one time I DID go out with a bunch of my guy friends I got so sick afterwards, I could barely get out of bed for the following 3 days.  Great advice, Doc.  Hopefully, this blood irridation will be the beginning of the end of all this.  I still can't believe I canceled on those people.

A lot of premieres for shows for the spring season set off these past couple of weeks.  I don't recall any one of them disappointing.  Don Draper's wife singing that song to him at his birthday will be in my dreams for WEEKS to come.  And Game of Thrones... Oh might Gameof Thrones.  If you're not lining up behind Rob Stark at this point, you are on the losing side of this war.   Right now there are a lot of stories going on and they are alla kind of scattered so I'm a little afraid of how they're going to tie them all in together, but at the same time, I have faith in HBO to absolutely amaze me in ways I didn't know existed.

I put a decal on our car.  It's for the Jedi Order.  It means I'm officially a jedi, right?  Jedi's can drive Hondas.  Sure they can.  I'm a Honda driving Jedi.  Hello world.

We recently had a breakdown on our main desktop.  Thank Tebow for backups.  I hope you people out there in Windowland are backing up your data diligintantly.  It should be a crime not to!

I'm so excited for baseball season this year.  I don't know why.  I think that I haven't been able to properly enjoy a baseball game (at the park) in a number of years, and this year I am absolutely DETERMINED to call in some markers from friends that said they'd pay for me to go see a Yankee game for one reason or another.  Don't think I didn't take note of what you said... And I plan to hold you to it!!  I even have Anita excited at the prospect of tailgating before a game.  How this all of a sudden changed for her is beyond me and I'm not going to push it and change her mind!!  While I'm cautiously optimistic about the offense (enough to draft ARod in my fantasy league) and have confidence in the pitching, I'm looking for a good season and going deep into the playoffs.  But I guess, that's nothing special for us at Yankee Nation.

So let's pivot to this election!!  Thank you Republicans for COMPLETELY having this contraception bomb blow up in your face and having anything with a vagina and their own thoughts opposing the Republican Social Agenda.  I have never seen poll number dip this fast.  Women are leaving Romney faster than Newt leave sick wives.  I keed.  I keed.

From what I hear about these first two treatments tomorrow and Wednesday is that I shouldn't be waiting on a miracle.  This is a long and arduous process and I might not feel the intended effects of the procedure for a few weeks.  It's going to be difficult tempering my enthusiasm mainly because I want out of this funk NOW.  I want to just get a glimpse of who I used to be.  Really.  I hope that's not too much to ask.

Is anyone paying attention to the NBA?  Me neither.  I'll just wait until the 2nd round of the playoffs and start enjoying it from that point on like every other American.

I broke our main desktop computer.  Seriously.  I did.  I feel so stupid when I do something like that.  I mean, computer maintenance should CLEARLY be in my wheelhouse yet... Here we are.  The silver lining is it gave me an excuse to finally split the video feed so that we can watch the videos on the TV while also keeping it connected to the monitor.  It's the low-tech solution to the problem, but that's my favorite way to do things.

My mom bought herself an Amazon Kindle Fire.  Oh boy.  Her interactions with this device could spawn their own blog.

So, it's the next morning now and my mother and I are in the Perelman Center about 1/2 hour early for my appointment.  I made the mistake of bringing her new Kindle Fire with me.  Man was I right.  She just asked me where the mouse was.  I can't make that up.  I don't know why she wanted it, but it was on sale and she can certainly have whatever she wants.

Where was I from last night?  I should ignore my ramblings and just take pictures of my mom trying to get used to the user interface on the the Kindle Fire...  It's amazing.  Of course, I can't do that or else I think my mom would slap me across for the first time in 12 or 13 years.

OK.  So it's been about 10 minutes and...  I don't mean to alarm anyone..  But she's figuring it out.  Yeah.  She's getting around on the interface and is now surfing the web.  Obviously, the apocalypse is upon us.  I hope you're wearing clean underwear.

A lot of people think that I'm afraid for this procedure today.  I'm not.  Sure, the idea of someone slowly removing the blood from my system and then replacing it doesn't exactly sound appetizing, but I've been through much MUCH worse.  What I'm most anxious about is it working.  That's all I want.  I understand it will take a while and that this is just the beginning...  But if this doesn't work... THEN WHAT?

The doctors are starting to file in, I should get ready to go.  I haven't eaten anything since last night as per doctor's orders so I'm a little bit miserable.  There's also REALLY loud construction going on outside that is REALLY REALLY annoying.  Hopefully my room will be a little bit quieter and more conducive to some Netflixing.

See you on the other side, Ray.

Vanity

I know as a man that I shouldn't be caught dead saying something like this, but I just have to be honest.  My weight and the changes in my appearance are bothering me.  The funny thing is, my overall WEIGHT hasn't changed, but the way the medication is affecting me, where I carry said weight has changed.  In fact, a few aspects of my appearance have changed every time I look in the mirror, I just don't look like me.  So, to bring everyone up to speed... I don't LOOK like me.. I don't FEEL like me.. I stopped acting like me a long time ago... Am I still me?  Am I still home? 

I have these terrible dark circles around my eyes.  Not like bags or things that you hear most high school girls complain about, but these DEEP, DARK circles that make me look a bit ghostly.. I can't get rid of them and it's starting to dawn on me that I may never and they'll always be here.  My doctor warned me that the medication I'm on would transfer more weight to my face, especially since he more than doubled it a few weeks ago.  I didn't think it would be so dramatic and so quick.  I feel so vain and so stupid for even writing about this, but I mean...

What's worse is that I have basically nothing to do but sit here at home and sulk.  I'm not well enough to really do anything and the one time I was encouraged by my doctor to exert myself and spend some time with my friends, I paid for it in bed for about 4 days straight.  The treatment path I'm on right now is long and ardous.  Since it involves draining me of blood, I have to wait 2 weeks between each session to allow for my body to recover from the last blood letting.  That leaves me with nothing but time to sit at home and stare at myself and how completely alien I have become. 

It's amazing what a sport I've made of NOT looking at myself in the mirror.  I didn't notice it until today when I was using my webcam and I saw myself in detail for the first time in a looooooong time.  I was seriously ashamed and a little appalled.  It was so shocking and jarring that I ran to the bathroom to change what I could.  Unfortunately, there were no answers in the medicine cabinet. 

I feel sense of self slipping away each day.  I never thought saving my life would take me so far away from me.

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.