Day –6: And We All Shine On… Like the Moon, and the Stars, and the Sun

I am exactly 6 days away from my transplant this morning and I'm officially freaked out.  On 2/3 I attended a bone marrow transplant class along with my brother-in-law at the Perelman Center where I used to get my infusions and the information was too much to take.  The nurse practitioner tried to keep everything as light and tried to be as supportive as possible, but the elephant in the room was still there.  This is going to be the most difficult undertaking of my life. 

My sister, mother, and pre-wife had already gone to the class 2 weeks prior (I was supposed to attend as well, but I was in the hospital as a patient and couldn’t be around other people) so I already had much of the information, but sitting through it myself and receiving a big binder with my name on it with everything that’s going to change was a bit much.  I don’t know how to process this.  I can’t seem to wrap my head around it, laugh about it, and move on.  I’m freaked out. 

Once piece of new information that I found out at the class was that I will be forbidden to drink alcohol for an entire year from day 0!  WTF?!?  I almost threw in the towel and told her that I think I’ll take my chances with this whole Myelofibrosis thing.  Not that drinking is this huge part of my life, but this is kind of a big year.  This means that wedding – no alcohol.  Can you imagine that?  Having to shake the hands of those people that I really don’t know and pretend to care about them and smile and to it completely sober?  Vegas is looking pretty good to me right now.  Never mind the wedding.  The bachelor party!  No alcohol.  No alcohol at my bachelor party.  I don’t even know how to elaborate on that point.  Our honeymoon – not a drop to drink.  We haven’t even chosen where our honeymoon is going to be, but I’m pretty sure that I want to drink on it!  }o-/

So in response to this new information, I figured I would just spend these last few days absolutely blasted.  Wrong.  What I failed to realize was that I’m too anemic to drink and enjoy it.  I’ve been taking shots of a drug called Neupogen over the past two weeks to keep me healthy.  The way it works is that it forces my bone marrow to contract and expand in order to create more blood cells than it would normally create.  Of course, since the process is forced and is unnatural it is also somewhat unregulated.  When the marrow expands, it doesn’t stop until it hits the walls of my bone; not the most pleasant experience.  Anyway, I was under the assumption that the drug forced my marrow to create ALL TYPES of blood cells, but that’s apparently not the case.  It only creates white blood cells and by the way I’ve been feeling over the last few days, my red blood cell/hemoglobin count has dropped to below 8 (the threshold for me to get a transfusion).  You would think that having a few drinks while you’re anemic would make you feel drunker than you’re supposed to and for some it might, but unfortunately for me, I just feel sick, get a headache, and come home and throw up like a high school kid going to his first keg party.  So to recap – I’ve spent the last 2 nights eating out, Thursday night I drank a lot, Friday night I only had a little.  Both nights I came home and yacked like some rookie.

Anyway, today is my last day of freedom.  I’ve asked people to come over for one last visit and I’m looking forward to it.  I’m basically going to leave the door open here and let people come in as they please and spend as much time as they want.  It will be really great to spend some time with my loved ones one last time before I’m normal.  My friend Chrissy said that she has some sort of surprise for me and I’m looking forward to that, obviously.  I’m also looking forward to the many Skype dates I plan on having over the coming weeks.  Today is also the last day that I can eat food from outside the home.  I’m thinking a nice dose of McDonald’s and other crap will definitely be in order.

For now, since this post was a little morbid and I want to leave on a happy note, I leave you with this amazing article:

Click here to laugh and smile

 

Thank you for your support and kindness, everyone!

I’ve Got Another Confession to Make… I’m Your Fool

 

 

 

My sister has started a blog of her own on carepages.com to keep people updated with what's going with the transplant.  You have to sign up for a membership on carepages.com, but it's free.  If you're interested in what's going on and would like to be updated, please follow

http://www.carepages.com/carepages/PaulashsTransplantUpdates

I'm going to try and update on here as often as possible, too.  Unfortunately, I don’t know what my motivation level is going to be once I’ve gone through the entire process.  For all I know, I may be spending an entire month @ UPENN watching Star Wars on an endless loop (which actually doesn’t sound that bad to me).

Anyway, if you are interested, please sign up and check both places.   I will do the best I can to keep people abreast of what’s going down, but I know my sister will do a better job because she’s awesome like that.

 

Thank you!

A Selfish Plea to my Tweeps

The following is going to be a selfish plea to anyone out there listening. I apologize in advance for being so and assure you that I am not normally this selfish. Not always, at least. }-)

As most of you know, I have a pretty serious illness. It's called Myelofibrosis; it attacks the marrow inside my bones and turns them into useless fibers. It's the marrow that creates all your blood cells that your body needs to transport oxygen, fight off illness, and clot and close wounds. As more marrow is turned into fiber, my body is less able to replenish what it needs to carry on and I'm forced to received blood transfusions and take injections to force the remaining marrow to work overtime. Eventually, my marrow will fail completely and then... well... Not so nice things happen.

I am very lucky, however. While I have been afflicted by this disease (by the doctors' estimation) since I was about five and there is no known easy cure, there is a way out. A complete bone marrow transplant will cure me and I'm scheduled to have one in February @ the Hospital at the University of Pennsylvania. For those of you that don't know what's involved in a complete bone marrow transplant, I'm going to be completely irradiated and have strong chemo (bye, bye hair! My one good feature!). They then trasnplant stem cells into me with a blood transfusion and voilah! It's a whole new me! Literally. Many things might change. In fact, I was in the waiting room one day talking to someone who had a successful transplant of his OWN stem cells and he said that before the transplant, he could not stand chocolate ice cream. After the transplant, it's all he will eat! How odd, no? Well, when I saw Dr. Stadtmauer later that evening, I told him, "Listen Dr. If I come out of this thing a Phillies fan (he's a huge fan), you and I are going to have WORDS." Hahaha. For those of you that don't know, I'm a huge yankees fan. Enormous. I live and die with the pinstripes.

But I digress. Since the radiation/chemo cocktail is basically going to destroy any shred of any immunity that I've ever developed, I will be spending the next 4-5 weeks hospitalized simply rebuilding every immunity I've ever had since birth. Sounds like fun, right? I guess we'll see.

This story is getting long and I apologize. I'm going to try and cut to the chase here.

I'm going to be spending a lot of time in the hospital starting in February. Hell, I already spend a lot of time at the hospital. I had a birthday party last Saturday and was going to use any money I received to buy a new laptop to keep me connected to the outside world while I was in the joint. Unfortunately, due to issues I've been trying to resolve for a while, my paycheck from my job (I still get paid thanks to great short term disability coverage offered through my awesome employer... and THEY pay for it!) has been suspended and the money that I received will more than likely have to go to bills and other things to keep things running.

And this is where my selfish plee comes in. I'm asking for donations to "Paulash's laptop fund". I know it's completely materialistic and I'm half embarassed to even be asking this, but I'm going to be cut off from the world. I thought I would be able to buy a nice modest laptop and be able to Skype with my loved ones or stream Netflix or watch other movies or just to keep myself entertained. I'm even going to be spending some time in isolation because for a while, I'm going to have zero immunity and under heavy medical scrutiny.

I know I'm being selfish. I know times are tough for everyone. I know there are bigger things in this world that could use better attention. But if you can, and you would like to donate absolutely anything, I would be much much obliged. Thank you!

My Cock is Cleaner Than Your Bum

I had to take the day off from work today.  I wasn’t feeling very well and wasn’t really able to sleep last night and just needed a day to get my shit together. 

Of course, that afforded me the time to watch TV (after doing my laundry).  So,  I watched With Honors again today.  My god, I love that movie.  Right now, I’m willing to go as far as to say that it’s my second favorite movie of all time (behind "Contact”… Don’t ask.. I’m a weirdo).  Of course, being the enormous sap I am, I cried like a baby at the end when Monty reads Simon’s obituary.

I absolutely love stories of redemption.  Redemption is what makes humanity so great.  Redemption is what makes being human worthwhile.  In 99% of cases on Earth, no matter what ill-advised decision you’ve made, there’s always a chance of at least SOME redemption.

We are the Change that We’ve Been Looking For

 

I can’t begin to tell you how I’ve felt the last few days after the healthcare bill passed.  It wasn’t nearly as liberal and as comprehensive as I would’ve liked, but it’s a step in the right direction.  I understand democracy is slow and that legislation is even slower, but what a day to be an American.  What a win for the American people.

You are Pulled From The Wreckage.. Of Your Silent Reverie

The last few days to what now that I think of it-over a week has been… odd for me.  From just before I went to PA to see some venues with Anita (and go to James’ house party).  I just haven’t felt right.  I thought that it was my body coming down with something.  I thought I was getting a cold.  I actually thought it was kinda funny that at the end of all this, I’d be getting a cold right before getting to work.  But now that I’ve spent the last two days REALLY thinking about (and being a little reclusive… which is a little easier when you’ve got snow snow snow snowtorious going on outside), it’s not a little cold.  It’s something so much more than that.

In my idle time sitting here on the couch I spend so much time just thinking (and playing Madden).  I think about all sorts of stuff.  My life, my job, my friends… My love.  Yesterday, I had a conversation with my mom about me possibly becoming an atheist.  It hurt her and it hurt me to see her hurt by it, but it was something that I had just been thinking about.  She told me that she couldn’t believe that those words could pass my lips after everything I had just been through.  And I could see it on her face.  She spent so much time pleading with God to spare me what could’ve been my demise (by last count) three times over.  The fact that we heard the news that the Myleran was working on her birthday was some sort of sign to her.  A rebirth of sorts.  An end to the 30 year war my body had been waging on itself.

And then, as it tends to do, my mind went on a tangent.  Why?  Why all of a sudden was I due for this miracle?  A drug that is rarely used for anything is basically saving my life?  A mild chemotherapy pill no wider than the circumference of the tip of my pinky was going to make me last?  For what?  Does it mean anything?  Does any of this mean anything?  Was it just dumb luck?  That 1 in 50 shot when the hail mary is actually CAUGHT by the wide receiver in the end zone to win the game?

And then, as I tend to do, I thought about Anita.  She’s the only one here that has no vested interest in this at all.  She’s the one that should’ve run for the hills at the first sign of blood.  She’s the one that isn’t obligated by any ties of family or long standing friendship to be by my side for any of this.  But that’s right where she was.  She couldn’t be there for me (physically) as much my sister, and she didn’t get as emotional about everything as my mother (very few people do), but in her own Anita way, she was there for me.

The last two days have been exceptionally difficult for me emotionally.  I was so confused as to what I was feeling exactly.  My eyes welled up for no reason at times, I didn’t really feel like talking to anyone, I listed to all sorts of sad songs, and missed my friends.  I attributed it to the snowmageddon going outside.  Crappy weather… Sad feelings.. It happens, right?  Well, it finally hit me tonight while Anita and I were discussing what our plans were for Valentine’s Day.  I miss her.  I mean, I miss her all the time, but right now, I really miss her.  I’ve been obsessing over her curly hair and some of the faces she makes and some of the weird things we say to each other that make us US, and I just… miss her… but I digress. 

We were talking about our plans and I started fantasizing about living together and all that stuff and how often she would need a night out with her friends to deal with the fact that… Well…  She’d be living with me…  It’s not going to be easy…  I mean… I have bad morning breath, I am messy, and I never wear pants at home… And that’s just the tip of the iceberg.  And then I thought about the future and yadda yadda yadda… sappy sappy sappy… 

And that’s when everything came together.  An epiphany.  I felt that maybe there was a God; maybe there WAS a rhyme AND a reason to all of this.  Everything that I’ve been through over the last few months.  I can’t tell you what it’s like to think that “Oh my God, there’s a chance I might die”.  It’s scarier than you can possibly imagine.  But for what?  Maybe God WANTED me to go through all this.  Maybe the fact that I fell ill IMMEDIATELY after proposing to Anita wasn’t a coincidence, but a sign.  I’ve been dealing with this blood shit since I was five damn years old.  I can’t even count how many different doctors I’ve seen to try and figure out what wrong.  I don’t even remember half the procedures I’ve had to go through to identify what exactly was the ticking time bomb behind all my ailments.  So why now, right?  Maybe I needed to get through all this to purge my body of it.  Maybe even a test for Anita; a test of her commitment and resolve and LOVE for someone that might not be there forever.  So many times I’ve come to the brink with this thing over the last 25 years and now, as I’ve found my wife, the person I want to spend the rest of my life with; maybe God found it necessary or thought it was time that this battle should end with me (and us) the victor.  To essentially end that chapter of my life so that I can officially move on to the next one without having to worry about what lurks around the corner or when the next landmine will get stepped on.

That feeling I couldn’t identify for the last two days?  I needed to cry.  That’s what it was.  I know it’s weird to have a man say that, but it’s true.  I needed to cry.  I put on a movie that I haven’t seen since I was about 17 years old and I really let it out and it felt 100% cathartic.  This thing with Anita.  I can honestly say that I’ve never felt this way before.  EVER.  And we’re SO different.  And sure, there are times that she pisses me off and probably double that (at least) for the amount of times that I’ve pissed her off, but in the end, I never want to wake up next to anyone else. 

If this is the case, and this is the endgame then it was all more than worth it.  The fear, the overwhelming and consuming fear of not knowing whether or not if the sun will set for me soon was worth it.  If this was the rain and the rest of my life with Anita is the rainbow; I would’ve gone through double what I went through (not that I’m volunteering.. yikes).  Anita, me, her family, my family, OUR family… Nothing less than a gift from God.  Living mostly happily ever after.  I couldn’t think of a better ending.

My Life, My Story, Myelofibrosis, err.. Myleran??

How did Mr. Womp Womp Wooomp Downer turn back into his happy self?  What caused this transformation?  Well, it was a lot of hard work (and trial and error) and the expertise of Dr. Stadtmauer of The Hospital of UPENN.  I could not recommend him MORE to anyone having ANY hematological disorders.  When you see him, you are going to wait a long time before he actually comes to the examination room, but I’m telling you, he’s more than worth the wait.  He’s knowledgeable, personable, and a perfect mix of seriousness/humor for people dealing with really difficult health issues.  His team is just as impeccable at HUP.  I’ve seen an umpteenth number of his colleagues in my many stays at HUP and they’ve all just been fantastic.

Now, I know this sounds like I’m talking as though I’m cured.  I know that my battle is not nearly over and that there may be times ahead, but for right now I am going to enjoy the fact that I am healthy and am able to reasonably enjoy my life again for the first time in about 8 months.  And the best part about this news?  It took three weeks to get here.  Only three effing weeks to turn it all around.

So, after the last battle right before Christmas, Dr. Stadtmauer’s “hail mary” was something called Myleran.  The medication is really supposed to be used for cancer patients, but Dr. Stadtmauer was interested in the drug’s ability to suppress the bone marrow from creating cells.  Everything else we had tried to do this either had a negligible effect or may have contributed to my blood clotting even more. 

At last check, my blood counts were extremely out of whack.  My hemoglobin count was fluctuating between 6.5 (at its worst) and 9.1 (immediately after blood transfusions – a normal hemoglobin count is between 14-18 gm/dl).  My platelet count, which has caused the most damage to my life with all the clotting) has been astronomically high.  Before the new year and before starting on the Myleran, it was hovering around 1.2M (a normal count is between 150K – 400K / microliter.. yep.. About THREE TIMES the MAXIMUM safe amount).  These are numbers I have been familiar with for a while.  The HGB was not seen double digits since around 2007 and the platelet count shot through the roof following my splenectomy.  Alongside Myleran, I switched blood thinners.  Either the Warfarin I was taking failed or my body was getting used to it or something because I had the blood in the lung episode while on Warfarin.  A new drug called Fragmin would become my new friend.  The benefit:  Fragmin doesn’t really need to be managed.  I just take it and that’s it.  Oh!  Another incredible amazing wonderful minor benefit of Fragmin is that it is not metabolized in the liver, SO I CAN FINALLY DRINK ALCOHOL AGAIN!  Ahem.  Which is good.

Anyway, after being on Myleran for two weeks (on my birthday) my blood counts returned at a 9.6 for the hemoglobin (I had a transfusion the preceding week) and miraculously, my hemoglobin returned at 874K.  It had fallen 400K in a little more than 2 weeks!  It was absolutely nuts.  I wanted to jump out of my skin with joy when I heard this.  It was the 2nd best birthday present I could’ve gotten behind the PS3 my sister got me.

Again on the 25th, I had another appointment with the good doctor to check the progress again.  This time, the results were even more unbelievable.  My hemoglobin at 11.1 and platelet 504K!  Dr. Stadtmauer even took the time to pat himself on the back.  Ha.

Tomorrow, I have another appointment here locally in NJ with my backup hematologist to see where my counts are and for the first time in months, I’m actually looking FORWARD to it to assess my progress instead of being mortified to find out how far I’ve regressed.  I wonder if Dr. Kumar (the local hematologist) is going to be amazed when he sees my CBC numbers.  How exciting!

As always, thank you to everyone who supported me through all this crap.  I’d like to give a special thank you to my very good Tom.  When I spent some time with him this weekend, he stumbled over to me and said, “Hey, listen.  I’m really glad you’re feeling so much better.  I was really worried about you.  I just wanted you to know that.  I wouldn’t be able to tell you this if I was sober.”  Made me laugh and brought a little tear to my eye.

Here goes nothing.

I Dream of O’Reilly

It happens to us all, right?  We can’t all keep up our guard ALL the time; every once in a while, we trip and fall.
Oh Papa Bear… You’ll be the end of us all!

My group of friends holds a reunion every year in January so that we all know that we all TRY to get together at least ONCE a year.  Not everyone can always make it, but it’s the effort that counts.  This year, it’s felt kind of special because it’s going to be my first big night out since I’ve been sick and I really REALLY wanted to spend it with everyone.  Needless to say, I’ve really REALLY looking forward to it.  /end understatement
I have been harping about this all week.  Let me stop lying, I’ve been going on about this damn outing ALL MONTH!  TO EVERYONE!  There is not a soul that knows me (or follows me via twitter/FB) that doesn’t know what this thing means to me this Saturday.  FREEDOM!  FRIENDS!  FUCKING KARAOKE!  What more could I ask for?

Well, last night, around 9:00, I got an email from Steve Figurelli (aka Balls) saying that he’s glad that I’m recommitted to watching 24, and that he and Alicia would not be able to attend.  I was devastated.  I couldn’t believe that out of nowhere, the Figurellis backed out LAST MINUTE.  Steve is KING of karaoke and Alicia is one of my best friends.  In fact, Alicia has probably been taking the brunt of my jabbering on and on for the past month.  She KNEW how excited I was and she KNOWS how important it is TO ME that they both attend.  And of course, I’ve almost NEVER known ALICIA of all people to back out last minute.  I was even in a situation once where EVERYONE ELSE (literally) backed out of a party once AND SHE SHOWED UP even though she said she wasn’t going to be able to attend.  She’s ALWAYS been clutch like that.  Ugh.

Oh, and the reason.  The reason just made me angry.  Frustrated.  LIVID.  Why?  The “Bold and Fresh” tour was coming to NJ on the same night and they both just HAVE to attend.  Really?  Our big reunion, MY big return to the nightlife was being marginalized for BILL FUCKING O’REILLY?  I was so sad and so mad at the same time.  I could not let go of the feeling that we LOST to BILL FUCKING O’REILLY.  I mean, if they were to ever nominate a king for all douches in the US, he’d have to be right at the top of the shortlist, wouldn’t he?  The man defines a word every day on his program to add to the vocabulary for his audience… For his ADULT audience!  WTF?!?!  This ain’t romper room, asshole!  GIVE US YOUR OPINION ON THE NEWS AND SHUT THE FUCK UP!  And it’s THIS arrogant prick that we lost out to?

I was so damn upset that I dreamt about Bill O’Reilly.  I shit you not.  Last night, I dreamt that I was arguing with Steve and Alicia that he’s really not that big of a deal and that he’s not even as adamant a conservative as he in on The O’Reilly Factor and in his interviews and he really just hams it up for the camera.  The despair in my voice and the conviction of my argument are STILL so vivid in my head.  And you know what happened next?  To prove to them that he’s really not the conservative cheerleader that they think he is and are willing to skip out on a set of their friends for, I INTERVIEWED BILL O’REILLY IN MY DREAM!?  WHAT.THE.EFF!!

I woke up and I felt even worse (BTW – my interview in my dream proved me right… thank you very much).  I knew that at some point I would have to talk to Alicia.  Of course, I didn’t want to let on how sad/frustrated I was because I didn’t want to start any problems nor did I want to feel like they were OBLIGATED to go to our reunion (but really, they are…  As is everyone else!).  I contemplated avoiding her all day on GChat as to not have any confrontations.  Of course, Alicia sends me a message around 11:00am asking if I want to “be a fan of her company’s trade show” on facebook.  Really?  This pissed me off EVEN MORE.  After the email that her husband sent last night, the first thing she wants to talk to me about is her being a fan of her trade show?  I mean?  Can a brotha get a “sorry we’re completely dissing you guys last minute for the biggest douchehole in the entire world?”  OR something close to that?  A little something?  Anything.  I actually had to wait a minute before I responded because I had to untangle my emotions and get a hold of myself before I typed in “You guys are big jerks for leaving us flat for Bill fucking O’Reilly and his stupid idiotic book tour”.  So, after about a minute, I wrote to her, “I feel really sad that we’re being marginalized for Bill O’Douchy.”

Now, Alicia and I have been friends for maybe 15 years (she was even the first girl I had a crush on!) and you would not BELIEVE the audacity of her response.  I will post our GChat conversation:

me: I"m really sad that our reunion is being marginalized for Bill O'Douchy.
Alicia: ugh.  You know he was kidding, right?
me: NO! I WAS SO UPSET!
Alicia: Goddamnit.
me: HE FUCKING GOT ME SO BAD!  Wow.
Alicia: HAHAHAHAHA
me: Applause, Mr. Balls.  APPLAUSE.  I FUCKING DREAMT ABOUT BILL O'REILLY LAST NIGHT!  YOU JACKASSES!
Alicia: Weeeeeee are the chammmmmmpions, my friend
me: Because I was so upset!
Alicia: ahhhhhhhhhhahahaha
me: Oh my God, I'm so happy right now.  Oh wait.  Shit.  I have to email JOn and TOm.  They think you're not going.
Alicia: No way!  hahahaha oh no
me: Dude!  I WAS SO UPSET!  I couldn't imagine you guys not bein gthere.
me: And last minute!
Alicia: It's funny cuz I just yelled at him the other night for never responding to you...and last night he was watching dumb O'Reilly and I said "holy shit - wouldn't it be funny if you told Paulash we weren't going cuz you had to go to the Bold Fresh tour?"  he looked at me and said "...get me the laptop."
me: Hahaha.  Wow.  Wow.  Seriously.  I tip my hat to Balls.

Ladies and gentlemen, I’ve been punked.  Bad.  I spent 12 hours being upset at really good friends of mine because they 1)  Knew how much I was looking forward to this and having my people there and 2) Knew how much I absolutely loathe Bill O’Reilly.  It was the perfect storm for their sinister plot and I fell for it hook, line, and sinker.  Hahahaha.
Balls, you are one bad ass motherfucker.
I cannot WAIT until tomorrow!  Maybe Bill O’Reilly will be there!!!  Keep it pithy, folks!

VOIgle???

I really want to know if there are any plans for a Google based “home” phone that runs on voip that runs in conjunction with Google Voice.  I want this to happen before Anita and I move in together SO BAD!  I’ve wanted to utilized my Google Voice number for like A YEAR, now!  Someone make this happen!  SNAP!

 

I wouldn’t mind paying a monthly fee, either.  Just like Vonage; I just want it to be able to run with Google Voice so I can use all the cool features that I get with my own Google Voice number.

 

Man, I’m a loser.  }o-)

 

 

But a healthier one.  }o-)

Quick note about the weekend

So, as my condition has been improving, Anita and I are renewing our search to find a venue for our wedding.  I’m so happy to be reclaiming my life slowly.  Anita and I went through a whole slew of wedding stuff (and made a TON of appointments to view venues) yesterday afternoon.  That evening, we spent a little time at my friends’ house and today, my friend Steve stopped by for a couple of hours.  That was preceded by a Friday spent at my friend’s Mike’s house for a quick lunch.

Being social and feeling comfortable in social situations feels good again.  And while I will admit to taking two of those 5 hour energy things this weekend (which are definitely labeled incorrectly in terms of flavor… The flavors “berry” and “lemon-lime” should be named “ass” and “butt” flavor), I didn’t really feel sick at all.  I’m able to avoid the pain killers all day and usually only have to take them once at night. 

I’m starting to feel like me again and that feels good.  I’m hoping to get back to work in a couple of weeks and hoping to get back to SOME semblance of “normal”.

 

All good things.