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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

These are my friends..

Alicia

Why is it so hard to find a good hairdo?

11:27 PM

me

I have no idea.

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

Alicia

It fits?

me

Yeah.

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

Alicia

Excellent!

me

I"m wearing it right now.

When Anita finds out..

She's going to have a shit fit.

 

Alicia

Yes. Yes she is.

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

me

AHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA.

There’s always some reason to feel not good enough

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day+26: Not such a good situation

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

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

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

Day +09 – Day +16: I've gone much too far for you now to say… That I've got to throw my castle away

My friend told me that she was having difficulty connecting some of the lyrics to the content of the blog post.  I hope you people aren’t having the same problem… There is no correlation!  The lyrics are absolutely random. 

Since I’ve gotten so far behind, I’m going to have to speed you through the next week to catch you up to the present day so that we can continue this accordingly.  I apologize to everything that gets chopped in the “highlight reel” edition, but you’ve got to do what you’ve got to do.  It’s been much harder writing in here than I had hoped, but I’m thinking in the future, with my health improving as it is, I will be much better at it.  Hopefully.  }o-)

 

So here we go.

Day +09:

This day was pretty tough for me.  My friends’ (the Georges) daughter had a fever of about 104 and they were a bit frazzled.  Not only did it concern me, but Tom and Chrissy were supposed to come by that day and now they couldn’t.  She’s OK, though and everyone’s alright.  It sucks that I missed out on seeing them because I lean on them so much, but they’ve been so great about spending time with me over the past few weeks, I GUESS I can give them a pass since their daughter was sick.  I guess.  }o-)

Lucky for me, Anita was right there by my side and filled in for my friends caring for their daughter.  It was another easy relatively easy day, despite needing to get blood to keep me above the 8 gram mark.  Mind you, a hemoglobin count of 8 is not that much to begin with.

^{Here’s Anita playing with the fish bulb effect on the camera.}

^{And here’s a picture of Anita and her douche.}

---

Day +10:

After missing out on two of my most important friends the day before, it was important to get back on the horse, right?  Well, enter the man known as Steve, AKA the Captain.  Again, a part of my core friends and my brother from another mother.  We spent some time playing video games, playing Uno, and just general BSing.  Unfortunately, our time together was cut a little short in the middle as I was hauled away from the room to have a sonogram of my foot made.  It had blown up to about the size of a small Honda at this point and the doctor’s wanted to make sure there were no clots or anything too serious.  We still got in our fun and Steve, Anita, and I had a great time together.  I’m lucky to have both of them in my life, especially Steve.  Life without the wife is something someone can get used to.  Life without Figgy Pudding?  Why even bother.

Hush baby, daddy’s here… Everything’s going to be OK.  (One of the creepiest pictures Steve has ever taken)

Gotta flash the Figs if you’re down for the Hershey Highway

A Rousing battle of Uno

We had 4 Draw 2s in a row.  Nice shuffle job, Steve.

We got you..

Tsss tsss tsss.

---

Day +11:

Keeping the streak of love alive, on day +11, my pre-in-laws decided to visit me.  I wish they could’ve stayed a while longer because I love family (or almost family), but whatever.  It was great to see them and spend some time with them.  It’s nice to know that they’ve accepted me and treat me as party of their family because damn, do I love their daughter/sister.  For real.

Of course Shaney plops himself down in MY chair.  The chair no one else is supposed to sit in.  Sure it didn’t say that, but he should’ve known that the most comfortable chair was off limits!   }o-) I like your hat, Shane.

Awww.  Great picture!  Also, does Anita’s dad have a faux-hawk??!?

After the Ramnath’s left, Mom and I decided to take some pictures on our own.

Finally taking away what Lady Clairol grants my mom every month.

Awwwww.  How did Pushpita give birth to a black dude?

That’s more like it.

---

Day +12:

Nothing crazy that happened today.  Of course, by now, my feet have now ballooned into pontoons and they’re now causing me more pain than the Mucositis.  Just basically hung out with my mom and sister..  Nothing crazy.

---

Day +13:

Lucky number 13, I guess?  On this day, I was actually visited by my primary hematologist, Dr. Stadtmauer.  He had a very wide smile on his face and a paper in his hand.  His news?  For the first time in 13 days, I had produced “poly cells.”  What does that mean?  ENGRAFTMENT!  The stem cells had started to take hold and have started proliferating healthy cells through the blood.  The process of recovery had officially begun.  We’d officially won.  Rejection and everything we’d been scared of since day 0 had literally been obliterated.  Basically, my job had been reduced to trying to remain reasonably healthy for the next 200 or so days and not get a real bad case of Graph Vs. Host Disease and I’M CURED!  Sure, that’s a gross oversimplification of what’s ahead of me and it’s going to be very difficult for me and everyone around me, but if you break it down into its basic elements, that’s what you get.  I am no longer suffering from Myelofibrosis.  Say it loud, say it proud.

I can’t begin to tell you what this news made my mother and I feel like.  Everything that we’d been fighting for and everything that everyone had gone through over the last few years; I almost broke out into tears when I heard the news.  Fine, I started crying.  I called Anita, I called my sister (who didn’t answer and got a prank played on her… more on this later), I called my friend Mike (who also sounded like he got a bit emotional), and told everyone that I was online with.

So, I played what apparently what turned out to be a really nasty practical joke on my sister.  When I called her, she didn’t answer immediately and I decided to play what I thought would be a fairly innocent joke.  When she finally did call, I told her that there was some news that I would have to share with her when she got here, and I told her in a fairly morbid fashion.  With my foot being mistaken for a pontoon, the doctors had started prescribing steroids which they were hesitant to do as it could negatively affect the engraftment proceedings.  It was supposed to mildly disturb her and make her come to the hospital room faster than she normally would.  It didn’t.  Apparently, she freaked out and called a bunch of people to watch her kids and BOTH her and Craig came by because she was so nervous about what was going on.  When she found out, she appropriately dubbed me an asshole and began to notify the huge network of people praying for me/thinking of me of the new title I had earned.  They were all happy to hear about the engraftment and agreed I had earned the title by a somewhat wide margin.  }o-)  I might be an asshole…. But I’m an asshole that’s alive!!

This is Dr. Stadtmauer, the man that literally saved my life.  If you have ANY hematological issues and have access to UPENN, I highly suggest you come see him.  If he found my life worthy of saving, he’s bound to do the same for you.  If he weren’t a Phillies fan, he’d be perfect.

My mom and the man she dubbed a god for saving my life.

---

Day 14:

It would be pretty difficult to follow the awesomeness that was Dr. Stadtmauer’s visit, but Amanda and Tim were sure to try!  They drove down in the early evening and were kind enough to spend some time with me.  We got to discussing what an amazing job Anita does of finding deals.  Seriously.  That girl can find herself some deals.  Every week she gets a box in the mail for some stuff that she figured out how to get for free.  That chick is seriously amazing. 

This day was also the day I saw an Ophthalmologist about the problems I’d been having with my eyesight.  Acute vision had turned difficult and when I would play video games, my eyes would be very dry.  I was afraid that the radiation had caused eye damage and I was going to need glasses!  I pride myself on the fact that I have such good vision and would be devastated if I had to wear glasses (plus, I make fun of Anita for being blind as a bat all the time and I’m not ready to give her the satisfation of having to wear glasses… Not yet, at least).  Anyway, the doctor looked into my eyes and said while they were extremely dry, they were some of the healthiest eyes she had ever seen.  Take THAT, Anita!  Bwahahahahahaha.

The Ophthalmologist dilated my pupils so she could check out my eye.  Look at how dilated my eye is!

Tim and Amanda as they showed up with the Yankee fridge in the background.

Tim really stepped up his game on the facial hair front in solidarity with his facial hair loving friend who is out of commission after losing all his own hair.  }o-)

Smile!

Look at how good Amanda is at making silly faces!

 

I mean, she is really going for it!

---

Day +15

Today was supposed to be dedicated to Anita and myself, but I was just so tired.  The girl showed up at about noon and all I did for the next 5 hours was sleep!!!  All those late nights spent ROMMING had finally caught up with me, I guess.  Lucky for us, I found my wind again that night around 6:30 and we spent the time watching movies and just being silly in general.  I really love her.  We also Skyped with Rita at night.  Gujjus are cheap.

---

Day +16

I saw Dr. Garg for the last time today which made me sad.  He’s been the resident here that has been here for me since day +1, but he’s out of rotation now and going on a short 2 week vacation (well earned since he’s had to deal with the likes of me!).  From his assessment, he doesn’t think that I’ll be here for more than another 10 days!  How great would that be? To be home in a little over a week?!?  Oh man, I would love it.  Please!  Bring it on!

The rest of this day was spent lazing around with Anita.  We spent some time looking at men’s wedding bands.  I think I want one with a meteorite in it.  How cool would that be?  Yeah.  Exactly.

 

And tha’s about it, folks!   You are all caught up!  I tried to keep it short and to the point!  I apologize if I skipped over anything important!

Day +8: Welcome to the Jungle; We’ve got Fun and Games

Before I get started on what will almost undoubtedly be a lengthy, boring  post, let me first say two things
1)  Thank you for your show of support with my last post.  This week and a half has been murder and I appreciate everyone supporting me through this rough time especially
2)  TODAY IS THE LAST DAY OF CHEMO FOR ME!  One more shot of Methotrexate to suppress the ol’ immune system of mine and that’s it.  It’s up to my body to fight and get back to its old fun self.  It sucks because I was just getting over my Mucositis and this will surely bring it back in full effect, but on the other hand, if they deem me healthy enough to suppress my immune system one last time so that the stem cells will have an easier go of it.  BRING IT ON!  I guess.. 
Here are days +8 & +9
So what have I not told you and what’s been going on since day +7? Remember when I whined about being afraid of my hair falling out?  Well….  It did…  Sort of.  On Day +7, a day that I cherished as I got to see Anita after an entire week of our relationship being relegated to our phones, the Internet (Thanks, Mr. Gore!), and Skype, a day that saw my blood count fall below 8.0 and required me to have a transfusion and the promise of energy for a weekend with El Jefe, as she laid me to bed before she was to depart to my sister’s house, she rubbed my head as she knows I love to help me to sleep.  She stopped short her breath, withdrew her hand quickly, I looked up at her worried face as she declared silently, “It’s starting.”  I got up enough to turn around and see that my hair was indeed falling out in clumps.  It prompted this face as she wanted to take “one last picture before it was gone.”

No, my nose is not snotty, it’s got moisturizer in it to keep it from getting bloody fro the Mucositis.  Which doesn’t stop it from getting bloody inside, but I’d hate to think what it would be like if I didn’t add the moisturizer or do the saline rinse… Blech.  Oh, and if you think it looks like I’m about to cry….  Well…. It’s because I’m about to cry.  Don’t pretend like you didn’t expect it!  Anita stayed a little longer to console me and made sure I went to sleep before leaving.
The next morning, my nurse (Nurse Ashley) was totally a Yankees fan.  If nothing else, it assured me that I was in the most capable hands in the hospital.  The day started with my asking Nurse Ashley if we could clip/buzz my hair so that I wouldn’t be subjected to the agony of watching it fall out in clumps (yes, I meant for that sentence to sound as dramatic as it sounded… It’s me people).  She said that she’d get my meds ready, get the clippers and be back in 20 minutes.  My sister rushed over not realizing that 20 minutes in “UPENN Hospital” time could really be over an hour.  Anita followed shortly thereafter and while the first pair of clippers didn’t work, the second pair did.  And slowly but surely, with that unmistakable barber shop buzzing sound, my hair fell to the floor, clump by clump.  I sat in the chair with a mixture of shock and relief on my face.  Relief that I could now stop worrying about it and shock that I WAS LOSING MY HAIR!  Even if by my own hand!  Everyone knows I love my hair!  It’s basically the only physical part about my body that I like.  And there it went.  Bzzzzzzzz.
It felt like an eternity later, but when it was over, I was handed the clippers, walked over to the bathroom for the final trimming of the beard.  This is how I emerged on the other side:

I know everyone keeps telling me that I pull the bald look off pretty well, but come on, if that doesn’t say “douche wad” to you, nothing does.  And that’s all I could muster for a smile.  I really miss my hair.  Especially my facial hair!
As devastated as I was by my ailment of alopecia, I didn’t have time to wallow in it.  According to to my trusty Google Calendar, I was to be visited by two angels, Sabora  and Sandy!  Two of Anita and my good friends from up in the Poconos.  While we waited for them to arrive, the team in charge of the transplant---- OH WAIT ----  There’s an important story we’re missing.
So, a few days before this, I started to notice the underside of my feet started getting a really raw feeling and when I took a shower, they were kind of hurting afterward.  Fast forward to day +9 and my foot is swelling up faster than a fat kid in a cake factory. ---- Back to our story…  The team of doctors came to visit me and they’ve decided that my feet are officially swollen and would like some rheumatologists to take a look at my poor dogs as they were definitely barking.  This part of the story is going to get interesting later.
Finally, after a day full of bad and sad news, Sandy and Sabora arrive and they’ve brought with them a few surprises, namely James and Phil and Sabs’ little brother!  Even better still they were soon to be followed by Sarada.  Having them there was absolutely great  When Anita first told me that Sabs and Sandy were coming to visit, as excited as I was, I had assumed they were going to be in Philly and were just going to be polite and come through.  This was not to be the case.  Their entire purpose here was just to spend time with me and take my mind off of everything that was going on and BOY DID IT WORK.  I don’t get to spend much time with our Poconos friends so it was just great to sit around and act dumb (well, I wasn’t acting..  This is the real deal here, baby).  I couldn’t believe how long they stayed.  It made me so happy AND!  AND!  While they were here, Anita had made a bet that the exercise portion of the BMT manual states that if you’re HGB is <8, you need not attempt to ride the bike.  She said it didn’t and I, of course, KNEW that it stated as much.  So what now?  Well, one weekend in the distant future when I’ve regained a good portion of my strength, the lot of us are going to spend some time down in Ocean City, MD and Miss Anita is going to be purchasing James and I some delicious crab cakes.  She said she “doesn’t care” because at this point, it’s all “our money” and she’s still going to he able to have some delicious banana crepes (What happened to our wedding diets?!?!?!) to which I say, of all the things she will taste that weekend… The one thing that won’t approach those beautiful lip of hers is the sweet taste of victory.  And nothing tastes sweeter, Mmmm Mmmm mmmm..
Anyway, they stayed forever but finally did have to leave.  We took some pictures and they were off.  Anita and I spent the rest of the evening watching the movie Stone (well, she watched it while I nodded in and out… I was tuckered out after all that hot brown on brown action earlier).  I think with all the sleeping I’m doing, Anita and I are switching places!  Hahahahaha.
Alright, all, thanks for reading.  Today, instead of leaving you with a funny youtube video… I leave you with something infinitely better… PICTURES!!!!!!!

I was really crying.  What an embarassment.  Why was this picture taken??  (Again, that’s MOISTURIZER!)

Everyone setting up

Phil, being the gentleman he is, made sure he took the comfy chair.

There’s a picture of my pole

Here’s a picture of Phil commenting on my pole (Damn, you got a huge Pole, Paulash!)  (Yes.. I will always be 13 years old)

I’m trying to get my pole in the frame

Anita is stuck behind me so she tries to cop a feel…  That girl needs to calm down a bit.  Maybe have a crab cake or something.

James “the photographer” set this picture up.  I hope he told the laptop to smile!!

Now you KNOW James set this picture up.  He’s HUGE!

Finally a nice one, but why is Sarada trying to elbow me in the nuts?  Aren’t I going through enough?

A picture of me in pain.  Anita enjoyed taking this picture.

James:  “So, I like to rub the nuts together right by my chin!”

Oh Good, Zombies…. Now I won’t be able to sleep.

Anita can’t go ONE DAY w/o thinking about blood soaked vampires!


Finally, the attention right where it needs to be.

AHHHHHHH

I have so much to tell you, but I can’t because I’m in so much pain.  OUCH!!!!!

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-)

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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.