Day +7: I Don’t Want to be an Old Man Anymore, It’s Been a Year or Two Since I was out on the Floor

It’s a little bit of cheating because it’s just beyond 12:00, but I’m waiting on transport for a CT Scan and since I’m coherent, I figured I’d try and throw in a little something extra.

First, props to my mom.  My goodness..  She has been here day in and day out babying my like I don’t deserve at all.  Getting back to real life is going to be really difficult.  What she’s done for me is above and beyond what is called of a mother.

Second,  as my immune system has bottomed out, I was transfused with two units of red blood cells while my hemoglobin count was at 8.1.  I’ve NEVER had the pleasure of 2 bags of red blood cells and while I still feel down, the underlying energy is absolutely fantastic (hence another post).

This week coming up is going to be a week of many people visiting and I can’t wait.  Friends from NEPA and from the Jerz are coming by to say hello and shake their stuff for me (ahem Steve ahem).  Most importantly, I get to see Anita IN THE FLESH for the first time in a week.  It’s going to be so tough with the no skin contact…  But Just having her in the same room as me makes me so happy.

My big fear now (aside from all the other ones) is that I’m mere days away from when my hair should start falling out.  }o-(  I can’t repeat how much I love my hair and how much I’m going to miss it.  Hopefully it grows back thicker and more beautiful and before the wedding!!

Alright, I thiink that’s all the drivel I can muster for one post

But here's a great classic for all of you

PS – I forgot to mention what a fantastic job I did of Yankeeing out my hospital room.  From the huge fridge magnet, to the Jeter Fathead on the door, to the NYY flag in the window, to the stickers on the entrance…   I may be in enemy territory… But we are the motherfucking Yankees.  We eat away fields for breakfast!

Day +6: In My Life, I’ve Loved Them All

Sorry again for not being available for just about anything over the last few days.  I’ve been stuck in my own personal hell here.  I’ve had the energy to do absolutely nothing and that includes texting, Skyping, and whatever else.  I apologize to the many of you that have tried to contact me.  In the future, if I’m out of comission, ,you can always ask Anita about what’s going on.  While she’s been a  bit  shut out as well, she knows what’s up.

So, what have I been up to?  My immune system hit rock bottom today.  That means tomorrow I should be bouncing back.  Tomorrow, the donor cells should start to do their trick and in a weeks time, I should have a good amount of my strength back.  Of course until then, I will be stuck in this hell.

I know lots of you are planninng on visiting in the coming days, THANK YOU!!!  I need  you and I love you!!

Again, I have no funy video for you today.  I’m sorry!  Hope all is well!!

Day +3: Just Because I’m Losing, it Doesn’t Mean I’m Lost

The last few days have basically melted together.   We had a small environmental problem with the heating unit where it was like a sweatbox in here for a couple of days.

Now that the fervor of Skype and everything has kind of died down, a feeling of listlessness has taken over.  I’m thankful when I get to see Anita, my mom, and my other family, but when I’m alone in my room, it feels very lonely.  I don’t have the energy to really do anything.   Not even put on a movie or anything.  That also contributes to the no posting.  I apologize.

Other than that, I basically have nothing else going on.

The Infinite Support of Sumana Stephenson

You, know my sister and her family have been incredibly helpful throughout the four years of this nonsense.  They’ve spent countless hours and more money than I deserve on trying to keep me sane.  Hell, my sister bought be my PS3 for AND she bought me the PS3 Move a year later and neither of those are even related to my disease.  They've been with me at doctor’s appointments (even some that Craig really didn’t want to attend) and have held my hand through the most difficult times of my life.

For some odd reason, I keep coming back to a random memory from my childhood when I was about 13 and my sister was 21 and in college.  I was supposed to go to a party and I wanted to take pictures there (back when cameras needed film).  You see, I wasn’t a very popular kid in high school.  Hell, I was never popular period.  I always took pictures to remind myself that I was at places and I did things.  Sure it sounds pathetic… But then again, I am a little pathetic.  But you know what else?  I’ve got amazing friends, a ridiculously hot fiancé, and a great family.  So maybe pathetic worked out pretty well.

But I digress.  So, I asked my mom to take me to the Shop Rite across the way and buy some film for my camera.  When the three of us got there, I waited in the car and specifically asked for the 24 frame film.  Anything less would be absolutely useless right?  Who takes 12 pictures?  I can take 12 pictures in ten minutes right now, right? 

Anyway, when they returned, my mom had bought the film with only 12 frames and it was tantrum time.  I was crying on the floor of the kitchen with my mom and sister trying to explain to us our financial situation and I just wouldn’t hear it.  All of my friends were so well off, I just couldn’t fathom that we had money problems.  And that wasn’t the point.  Almost everything I wanted I got.  Everyone always pulled together for me. 

At one point or another, my sister turned to me and asked, “Is there anything that you’ve asked for that I never got you?” and I straightened up on the floor and exclaimed, almost with pride, “You never bought me a pair of shoes when I stayed with you at your dorm.”  My sister exploded into tears, threw the 24 frame film that she herself had bought be because she wanted me to have it and stomped off.

I don’t know why I said it.  I already had a new pair of sneakers, I think I just wanted to win the fight, no matter the cost.  I come back to the memory time and time again and wish I could change it but I can’t.

My sister and I grew up always in some sort of quiet rivalry and she always seemed to get the better of me.  Maybe it was my way of winning a bit.  No matter what, even at that young age, I should’ve recognized how much everyone always pulled together for me.

It took another maybe 15 years for my sister to stop our tacit rivalry and really REALLY become a family.  I used to be so afraid when she would call or when she would come over because I knew it would be time to talk about what a terrible human being I am.  But now, since I guess I grew my ass up a little (even if a little later than everyone else), I’ve started to earn at least a little of the respect and love that I’ve been receiving my entire life. 

As things are now, I come and go from my sister’s house whenever I please.  I run around with her two beautiful children until I’m too tired to keep up (which is usually about 5 minutes).  Her husband and I enjoy both political and sports banter.  Things could not be better and I wouldn’t have them any other way.  But there’s always that little boy inside me that is so sorry for the thing I said that day all those years ago and hope to make it up to her some day.

Day 0: Welcome to your life–There’s no Turning Back

I made it through it.  That’s all I can say.  Now All I have left to to is rebuild my entire immune system and then re enter society.  Easy peezy, japanezy, right?

he morning was filled with another bout of radiation.  It was exhausting as usual.  Lucky for me, my mom was there for me and relieved much of my anxiety.  Having my family around has really helped.

I came back to the room and was taken yet again at about 1:30 for one LAST bout of radiation.  Lucky for me, it was so close to the first one, I basically slept through the entire thing.  Hahaha  ZzzZZzZZZZzz

I came back upstairs and FINALLY, my Anita is there along with my sister (and still my mom).  It took a  lot for me to keep from crying because while we Skype, it’s just not the same as being able to see her in person (jn her shnazzy new glassed!!)

At about 5:00, they started the transfusion of stems cells and they took.  All we have no is a waiting game to see if they graph and to eventually be cured.

 

I guess I will have to figure out a different way to get out of work all winter!!  Hahahaha

}o-)

This is the best reception rocked EBHAR!!

Day–2 You should know I bleed blue, but I’m not a crip though

I can’t even tell you the difficulty I had on day –2, so I’m not going to dwell on it.   Let’s just say that when they were putting the ports in my chest and in my left arm, I had real actual thought of escaping and running away.  Had the nurse not buckled me down on the table, who knows what would’ve happened.

I’ve always prided myself on remaining even keeled in stressful situations (baseball games aside), but I guess when you’re in a situation like this, all normal rules go right out the window.

So, just to recap yesterday, I had the ports put in my chest and my last dose of major chemo.  I had still not slept at all to this point and was cranky and just unpleasant in general.

So that brings us today.  Again, the previous night was filled with endless tossing and turning.  If I got 2 hours of sleep, that would’ve been a lot.  So what happened at 6:00am this morning?  I was dragged off for my first dose of radiation.

Through three three skybridges on an uncomfortable stretcher and back to the bowels of the Perelman Center where this all started.  My mom was placed in a waiting room and was taking to this huge chamber with something that looked like a huge space aged boiler in it.  I was asked if I had my own music or if I wanted to listen to the communal IPOD.  Of course, I have all apple products, but since I didn’t have my phone with me, I figured it a necessary evil.  I was then placed in fetal position, the music came on and then a loud buzzing started.  I didn’t really feel anything but a slight warmth, but I was in mental agony as the ipod mix seemed to loop between Lady GaGa songs and Cyndi Lauper.  I honestly don’t know what was worse, the radiation or the music.

About half and hour later I was done.  Between the gross fatigue, the proton therapy, and the shitty music, I was both tired, miserable and mostly incoherent.  I don’t think I had ever felt a bought of nausea that was that bad.  I held it, though as we were being escorted back to my room.

When we got there, the nurse informed us that I was to lay in the family lounge as the scrub my room from top to bottom.  In a few hours, I would be in full isolation.  Lockdown.  Solitary confinement.  Room 7014 would be my prison for the next 4-6 weeks.

As soon as I got to the lounge, I couldn’t hold it anymore.  I yacked like I haven’t yacked since I first started drinking alcohol.  It was an unpleasant mixture of unidentifiable food byproducts, bile, and god knows what else.  It was terrible and the taste lingered in my mouth forever.  And as has become customary, I passed out immediately afterward.

I slept and slept and slept until it was time again to go for radiation at 6:00pm.  This time I was armed with my Incredible.  The 2nd time around was not as bad, with my music playing and with me falling in and out of sleep, it was nice.

I can back to the room, sans terrible nausea (yay!) and was awaited by my wonderful sister, mother, and two family friends (well, Chumki Mashi I guess is more of an acquaintance).  We got everything in the room situated (including me) and I guess this is the go.  We are T –2 days to the transplant and all systems are go.

Here goes nothing.

 

 

And as always, if this talk of vomiting and general whining has brought you down… Here’s a little pick me up courtesy of my man Steve (I Apologize for it being sideways)

Day–4: You’re Barely Waking and I’m Tangled in You

The morning was difficult.  Sleeping in that cold, uncomfortable hospital bed all alone with no one is hard enough.  What I did instead was just toss and turn all night with my brain going haywire.  I don’t think I’ve ever felt this anxious in my entire life.  On and off, I think I got maybe 2 hours of sleep.

7 AM rolls around and there are two transports actually fighting over me.  Myself, I was rooting for the X-Ray lady but unfortunately, the IR transport person won.  I knew what that meant.  It was time to put in my ports.  The pic line and the hickman line.  My anxiety reached a fever pitch.

We got down to the procedure area, the doctor came out and I signed the consent forms and one of the nurses strapped my arm down straight out so that they can PIC line in.  I shit you not, I actually started fantasizing about trying to escape and getting out of there.  I’ve never had a panic attack before, but this was definitely as close to one as I have ever gotten.  Luckily they pumped me full of some anti anxiety meds and a sedative and I was out. 

Unfotunately, I woke up just as they placed the last part of the hickman line in my chest as they buried it.  Needless to say, it didn’t tickle.  Thankfully I’m whisked back to my room pretty expediently.  As wonderful as the people are in nthis hospital, it seems like you have to wait forever for EVERYTHING here, but I guess I got lucky.

I get back to my room and lucky for me, my mom was already there.  Unfortunately for my mom, I was miserable and couldn’t sleep.  I basically took little naps for the majority of the day until it was time for the big one.  The point of no return.  That whole shabang.  Everything that had been done to this point could be reversed, but now the nurse brought it what looked like to be a 300 lb bag of liquid chemo therapy to be hung from my pole (tehe.. Hung from my pole).  Once that starts, there’s no turning back.  Cells will be destroyed and I will never be the same on a molecular level.  So here goes nothing…

…  And funny enough it felt  a lot like nothing.  It was that huge bag of chemo and then several other bags of complementary drugs to manage side effects and what not , but afterwards aside from the fatigue, I really didn’t feel any averse affects.  I guess I was lucky.  The nurse did tell me that some people don’t feel anything until the 2nd day of chemo starts.

Later that evening, my sister came by and brought with her something that will insure that I will love her forever…  KFC.  Oh man, I scarfed that down like it was my last meal.  The Colonel was quite the life saver.  I was willing to enlist in his army after that.

Some more time past and at about 5:30, my friend Sue had come to visit.  I have not seen Sue in a very long time and while I would’ve rather had them under other circumstances, I was glad to be seeing her.  We spent a few hours hanging out, catching up, coloring, and watching Star Trek: The Next Generation (don’t dudge me!).

After she left, I cleaned up my night on various Skype dates and finally trying to go to sleep.

 

Here’s something less morbid

Day –5: So You Lost Your Trust and You Never Should Have… You Never Should Have

 

Day –6 (Saturday 2/6/11) was an open invite to the people in my life to spend some time with me and give me one last gasp of normalcy before I’m committed to the clink for the next several weeks.  The outpouring of goodwill from people was absolutely amazing!  I was a little nervous at first since the invitation extended from 9:00am and no one had showed up around 11:00.  I was getting a little sad when my phone rang with a specific ringtone.  Why was my phone playing Don’t Stop Believin?  It was my boss calling!  I couldn’t believe it.  Brian had drove all the way up from wherever his mansion is in south central Jersey and came to slum with us plebeians to see his loyal servant off.  I can’t tell you how great that felt.  How many people have a boss that drive that far just to spend some time with an employee that hasn’t been to work in 2 months?!?

For then on it was wave after wave of friends that came in to spend time.  Some family friends showed up.  It was absolutely fantastic.  The best part?  It felt normal.  When my friends Dirty and Mike (who came with his wonderful mother) show up, we sat around and BSed just like we did at work.  Nobody bothered to ask too many questions about the procedure happening on Day 0, they were too busy thinking about who’s going to win the Super Bowl and whether or not Ronnie and Sammy were REALLY going to break up this time (Anita thinks they’re done…. What a fool). 

While we were discussing the intellectual merits of GTL, my sister showed up with her kids and then the real fun started.  Between teasing Ella and chasing Cameron, I felt so good (and so tired) by 4.  But the kids weren’t even the best part.  Not by a long shot.  As most of you know, my choice of food is going to be severely restricted so my sister/BIL were kind enough to bring these most delicious crab cakes in so that we could share them for dinner.  The kids were wonderfully exhausting and the crab cakes were sensational.

As if that wasn’t enough, around eight and nine respectively, The Georges and the Figurellis showed up and this was the breath of normalcy that I needed.  Since we’d already been through the melodrama of explaining everything going on and we just got to hang out.  It was just sitting around bullshitting and it was everything I wanted it to be.  By the end of the night, we just watched TV and hung out.  Nothing grand.  Just a set of friends hanging out.  It was exactly what I needed.

Some of our family friends came over as well and it was good.  The whole day was perfect.  Filled with friends, family, and great food.  The day was more than I could’ve asked for.

PS – I got the best gift from Chrissy!  But unfortunately you can’t know what it is unless you come and visit me here at the hospital!  }o-)

---

Day –5 (2/6/11) aka Super Bowl Sunday was filled with some good old clean family fun and hectic-ness.  I was woken up in the morning with some delicious McDonald’s breakfast while Anita was woken up by two children jumping on top of her.  We spent the next few hours finishing packing.  I kept myself busy picking out DVDs to take with me.

I was called by the hospital at around 11:00 to confirm that I was going through with the admission to the hospital that evening.  I asked what time it would be and she said that the Rhoads Pavilion was expecting my bed to be ready by 8:00.  They were really expecting me to miss the Super Bowl to check into the hospital.  It’s like they don’t’ know me at all.

We went down to my sister’s house so that we could be close by when we got the call.  We were all watching the Super Bowl/getting everything ready when my phone rings and of course… my bed is ready @ 7:00.  I turned around immediately and asked her if I can get there between 9:30 and 10:00.  Of course, we get there @ 10:30 after we stopped by at McDonald’ s for my last double cheeseburger for many months.  We whizzed up to the Rhoads Pavilion and boom. 

Our Journey begins.

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!