Not so Great Expectations

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

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

Expectations.

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

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

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

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

Fucking Myelofibrosis.

Against My Better Judgment

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

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

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

Let me set the stage for you:

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

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

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

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

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

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

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

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

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

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

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

I seriously laughed for the next five minutes.

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

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

Here we go again tomorrow!

Here we go again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

See you on the other side, Ray.

Vanity

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

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

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

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

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

Sometimes you need a cure for the cure!

When dealing with something as serious as curing cancer in the "conventional" method, it's quite different from what transplant patients have to go through.  When you have cancer, once you hear the word "remission" from your oncologist, that's it for the most part.  In most cases once you go into remission, you are now one of those elite cancer survivors.  You begin to cherish every breath you take from that point on because before you were in remission, those gasps of air were in no way guaranteed.

For transplant patients like myself, the story doesn't exactly end there.  My issues were cured in such a way that the battle doesn't exactly end with the cure.  In fact, the cure itself might be what ends up leading to your demise.  In special kinds of disorders like mine and ones like the awful diseases that are Lymphoma and Leukemia, a stem cell transplant to replace the afflicted's own immune system with that of one modeled around the stem cells from a very gracious compatible donor (I think blood donors and donors in general are the saviors of humanity, but I guess my standpoint is somewhat biased).  So, at the start of the transplant, you have two organ systems in one person designed to keep the other organ systems safe at all costs.  Both with knowledge of what they believe to be invaders (basically any foreign body).  Yeah, this doesn't always end well.  (this battle is known as Graft vs Host Disease or GVHD.  If you've spent any amount of time with me over the last year, I've basically rammed this term down your throat)

Now, from all the tests that these people run on me every week, every indication is that I'm completely free of Myelofibrosis.  Of course, this is far from me being cured of symptoms.  The GVHD has manifested itself and taken hold of my life like a leach.  Just draining the life from me both metaphorically and actually.  My life is not my life.  When I look in the mirror, I can barely recognize looking back at me.  When trying to control symptoms of GVHD, my doctor admits that it's more of a finesse art than it is a science.  The first thing he decided he would like to try is what he refers to as "therapeutic phlebotamy"... You might remember it from the middle ages when they called it "blood letting" and used leeches.  500 years of medical advances and the first swing my award winning Oncologist takes is a blood letting.  I knew all these damn Twilight movies would have an adverse effect on our society.

Luckily, my hemoglobin counts are actually at a level which the doctor is confident that I can undergo some  treatment to reduce the amount of iron and other toxins in my blood that might be causing some of these post cure problems.  That's quite a big step if you think about where I was just maybe 2 years ago when every month I was being shuttled to the hospital (once even in an ambulance!) because my blood counts were so low they were afraid I wouldn't make it another few days if the levels kept falling.

You know what, though?  This isn't supposed to be a post about my blood lettings, so I digress.  This is a story of why I believe us bone marrow transplant survivors have an extra wrinkle on our road to recovery as opposed to other cancer patients.

For us, we're asking a foreign immune system to come into our body, make itself at home, take over part of our native immune system, fight off what the doctors want it to fight off, identify the good parts and protect them, and also make nice with what's left of our old immune system.  Wow.  Just READING that is exhausting.  Imagine LIVING it.  This whole situations is basically a benevolent (and PERMANENT) occupation of your immune system.  Now, I know what you're thinking...  There's no such thing as a benevolent occupation.  and I guess that's the point.  What's left of the old immune system is constantly sparring with the new one.  The new one attacks your body as it sees your organs, blood, tissue, yadda yadda, all as foreign bodies (because to it... YOU ARE!  Oh, and if it gets to your intestines... WATCH OUT!).   Oh sure, they can prescribe a plethora of immunosuppressive drugs, anti fungal medications, steroids, narcotics, and whatever else you're willing to swallow in order to mitigate the symptoms.  But in the end, in the war between the old immune system and the new one, you are left to bare the results.  I've had good days.  I've had bad days.  I've had weeks where I could get up, go to work, come home, and then repeat the process over.  I've had days where a normal day of work led me to come home, pass out, and literally not have the strength in my legs to get up.  I've just spent four days where I was so fatigued that I spent approximately 30 hours of those 4 days sleeping.  Not resting in bed... SLEEPING.  I cannot describe to you how miserable you feel after sleeping for 10+ hours and have to wake up not feeling rested.  It's enough to drive someone crazy.

So here I am.  Am I winning?  I thought I was.  Back in January I thought I was on the right track to gaining some sort of ground back at work and getting back on the life path that I had invisioned for myself.  I saw the 1 year anniversary of my BMT coming across the bend and I thought I would meet it and pass it with a smile and move on.  Get to a point where THIS IS NOT WHAT DEFINES ME.  Instead, my 1 year anniversary slapped me in the face and reminded me that this isn't over.  Not by a long shot.

Making plans to change the world while the world is changing us.

So here we are again.  I'm a little more than six weeks out of work and struggling to get through most days.  Each day is a battle with physical pain, fatigue, emotional stress, and other various demons.  It's awful.   Believe it or not, February 11 was actually the one year anniversary of my stem cell transplant.  That was more than a month ago, but that's not even the point.  It's been more than an effing YEAR and I'm still dealing with all of this!  That's not what the plan was!  I've had my struggle.  I've paid my dues.  Damn it, I've been paying my dues for years!  Isn't it time that I get to move on with my life!  Isn't it time that I get to live without having to worry what the lab results dictate I can do?  Hasn't my wife earned a life where she doesn't have to temper what she wants to do and where she wants to go in the fire of my affliction?  Isn't it our time now.  We did the sick thing.  Been there.  Bought the t-shirt, sent out the postcard.  It's time to come home and begin living. 

Living.  I've really learned the meaning of that word over the past few years.  What living is worth and what it's not worth.  After being so close to death so many times (even recently... we'll get to it) , you really learn how true the cliches are.  You find out who your real friends are.  You find out what's important to you.  You widdle life down to its bare essentials and prioritize.  You make the most of what you can with you can.  Time becomes something completely different.  Time becomes a precious commodity like no other.  Maybe one day, hopefully 25 years from now when I'm well beyond this trying to raise 2 healthy Yankees fans I'll become complacent about what I am going through now, but right now.  Right now as I'm in the middle of it, it's beyond anything I could express to you or to even comprehend myself.  So why bother, right? 

Time.  I feel it slipping away each day.  Each day that I spend locked up in this apartment not advancing my life to the goals I set after I got out of the hospital.  I feel the substance of my life slipping away with each visit from my physical therapist as he tries to explain to me the long process this might be.  I see the wretch I have become in the mirror hiding behind a beard from the weight gain that I blame on medication and steroids but is really from my lack of self control and food just being damn delicious.  I feel the goals I had set forth for myself after getting back to work slowly falling from my grasp with each doctor's visit that my oncologist tells me that I need this treatment or that treatment and that I can't return to work because my body will just break down again in the future.  All of these shenanigans are costing me the one currency I can't make any more of no matter how hard I try... Time.  I need TIME.

Thanks to the glory of Facebook, I see the lives of everyone I've ever glanced at awkwardly in a hallway at the mall when I was 7 and I see them living and I'm overcome with jealousy.  Even simple things that I can't do.  Do you know that my wife and I haven't even been on our honeymoon yet?  Is that fair to her?  Is it?  It's ridiculous is what it is.  How could she signed up for this knowing what she knows now?  I see the pictures of other people and I'm..  I'm just so jealous...  We should be doing some of that fun stuff.  I'm not saying that Anita and I would be jetsetting every weekend, but for fuck's sake we couldn't go for a walk yesteday because after a tenth of a mile, she had to help me back to the apartment up the steps because my legs hurt so much.  CAN I GO ON A WALK WITH MY PRETTY WIFE?!?!  CAN I HAVE THAT!

Ok, I'll stop with that now and get to the meat and potatoes of what's wrong this time.  The evil demon GVHD or Graft VS Host Disease to you doctors out there.  Pretty standard story.  Pretty standard story for me, at least.

At the end of January, I was having some problems that I didn't think were so bad, but I called the doctor anyway (I hate calling the doctor because their answer is always to side with caution and come in to the hospital... I obviously hate hospitals).  In the back of my mind, I was nervous.  I never shared this with anyone, but I was afraid the difficulties I was having might be related to the fact that I was being weened off of the antirejection medication and letting my body fend for itself more and more.  This is what I wanted.  I was taking aboutu 12 pills every day just to stay upright.  I know to a lot of pill poppers that sounds like Disneyland on cocaine, but for me just trying to go to work and put his life together, it was monotinous and terrible.  I thought a little discomfort at first was fine.  I mean, my life had turned into just a string of discomfort here or there, I just had to learn to get used to it.  I figure dI could get some pills to mitigate these symptoms until they subsided.  Easy peasy, japanesy. 

Of course not!  When could it ever be that easy for me?  What was I thinking.  I had received the medication on Thursday night from my doctor and started taking it on a Friday.  By Wednesday, I was actually WORSE off than I started.  Yeah.  So?  It's off to be admitted to the hospital we go.  They don't know exactly what was causing the symptoms, but 3 days of IV steroids and they served me up nice and good.  Friday night, I was home free.  Or so one would thing.

Saturday night, I'm sitting in our living room minding my own business watching television with my wife and probably thinking about how damn lucky I am to have her in my life.  Because I am.  Damn lucky.  Anyway, out of nowhere, I feel pain in my abdomen.  I exclaim, "Hey!  Something's wrong!"  This is mostly ignored by Anita because I'm always having some sort of sharp pain somewhere and they always go away.  She couldn't have known how much worse I felt, I didn't elaborate... Or at least.. I didn't have time to.  As soon as I made my exclamation, I doubled over the end of the couch writhing in pain.  I took what wit I had left and jolted to the bathroom.  The groundswell of pain in my abdomen was so great that it caused me to vomit.

   At this point, Anita got the hint that this might not be some normal bout of pain that I was whining about.  Anita dutifuly rushes to the bathroom to assess the situation.  She dials the doctor's paging service and leaves a message.  While this is happening, the pain in my abdomen increase 1000 fold.  I couldn't contain ir anymore, I was yelping out in pain quite loudly.  In the five minutes that passes, it's obvious that we have to head to the hospital.  The doctor on the other end of the phone can hear me crying out in pain and without Anita having to explain it to her, she says that she will let the ER know that we are on our way.

The car ride from Plainsboro to Philadelphia was the worst ride of my (and probably Anita's) life.  I was SCREAMING in pain the entire way.  Just screaming.  It was more pain than I'd felt all at once since waking up from the splenectomy.  And there was no way to stop it.  Before we left, I'd already taken a TRIPLE DOSE of my pain killer.  I never dared to even double the dose because my pain killers are so powerful.  Here I am sitting at 3X and nothing to  even ease the onslught in my abdomen.  I force Anita to stop several times on the highway just because I need to stand upright.  I actually needed to squirm.  She keeps trying to convine me that it's just better if we pushed on.  At the time, I think I took it as an insult.  Did she really think I wanted to delay the time to the hospital?  THAT'S HOW MUCH PAIN I WAS IN!  I actually wanted to stop and have it take longer.

After what felt like forever and a day (but was probably closer to an hour), we were there.  In the ER at UPENN.  People were trying to ask me questions, but all I could do was yelp in pain.  I don't know how I got through that triage interview.  They took mercy on me and sent me immediately to the back without having to wait.  They saw how much pain I was in.  Keeping me in the waiting room would just make the natives restless.

I'm in one of the ER rooms and I'm a complete dick to the nurse.  I don't remember why I was, but I was in SO MUCH PAIN and the stupid nurse was being kind of short with me.  I apologized a thousand times for my tone, and I explained that I'm trying to answer her questions, but I'm in an excruciating amount of pain.  But she was still cross with me and I let her have it.  There's no reason to be a jerk to me in that situation.  I was honestly trying to be calm and collected.  They must have pumped me full of ANOTHER 4 or 6 mg of IV dialaudid and that at leat pushed me to a place where I could speak rationally.  The apologized to the new nurse before me for what I had said to the previous nurse and she told me not to worry about it and that she'd probably heard a lot worse from people afflicted a lot less.  A little reassuring, but still.. I felt bad.  These people are trying to help me.

After a gazilion tests and once I was stabilized, the guessing game started and 6 weeks later here I am.  What happened?  Well, while the doctors were trying to ween me off of the antirejection medication to see if my body could fend for itself, they underestimated what my body was capable of doing.  The toll of me trying to live my life was too great and my immune system was much more fragile than they had hoped.  So what happened?  That wonderful GVHD had wondered itself into my intestines (the worst place you can get it) and started to cause chaos.  That pain I was feeling was my bowels being partially obstructed.  I was told I was (yet again) lucky that I hadn't had a complete bowel obstruction or a tear or else...  This might not be me writing this story.  It makes me feel lucky to be in this position, but it also makes me question exactly how many lives do I have here?  I feel like I've come up with at least 5 thus far.  I'm not a cat.

So, I was hospitalized for another week and it was decided that I needed my immune system to be built up before I can resume life/work and that the most important thing I can do for myself right now is to rest and allow the medication to do its thing and to allow my own immune system to strengthen.  Of course, at every subsequent meeting with my doctor, I've asked if I can return to work.  I don't have the TIME for this.  Apparently, he disagrees.  Either that or he doesn't care about my plans.  I don't argue with him because... Well... I mean.. He did save my life.  I guess I have to give THAT to him, right?

I'm back in full force on the antirejection medication.  Shaky hands and everything.  I'm on 3 different types of steroids.  Remember at the beginning of this post when I complained about having to take about 12 pills a day?  Well, bring that up to about 24.  24 pills a day just to stand up in the morning.  Is it even worth it?  I've been trying to make the best of it, but it's difficult to see the bright side of anything at this point.  It's difficult to put a silver lining on the darkness. 

I can't really talk to anyone because I'm sure everyone is tired of hearing me whine about how tired I am.  I try to make plans to have people come visit me or have short visits places so I don't feel so isolated, but of the 5 that I planned, 3 fell through at the last minute.  Two of them because of sickness has held me back.  But what can I do?  Each day I mark the time and march on.  I keep going because I don't have a choice otherwise.  I march on in hopes that my next lab report will hold something different.  I mark time until I have something better to record.  4:45am.  Mark.

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I Hope the Leaches are Fresh Today

So, today I had my first real live blood letting.  Don't get your mind twisted.  A blood letting is exactly what you think it is.  Don't let the modern term 'theraputic phlebotomy' sway you into thinking this is anything more than draining me of bad blood.

Now, there's an entire back story as to how this is all going down now and how far I've fallen off the recovery wagon thanks to my erratic co-pilot GVHD, but I haven't hada the inspiration to write about it as in depth as I should (Read:  TV was really good over the last few weeks). 

The gist is that while I've been recovering slowly, toxins have been accumulating in my body as well as very high volumes of iron.  It has reached a point where I can no longer function for an entire day.  I'm yet again slumped into short term disability, trying to claw my way back to being a productive member of society.  Yeah.  It sucks.  But i digress.

Here we are, on Meatless Monday no less (that is another story for another time) at The Hospital at the University of Pennsylvania Blood Donation Center and I'm peering around the corner looking for the leach room to get this blood letting on the road.  Sucks for me, there are no leaches.  It's just a standard blood donation and they dispose of the blood at its completion.  Pssht.

Anita and I sat there as the nurse prepped my arm by rubbing it with what I could only surmise was iodine by the smell of it.  I'm not freaked out or anything.  When you've had as many major and minor procedures as I've had over the past 4 years, iodine is the least of your concerns.  From me accompanying Anita to her blood donations, I came prepared for a short ordeal.  I brought my tablet to watch a movie on while the blood was being drained to pass the time.  Normally, when Anita donated blood, it took upwards of 45 minutes.  That sounds like an episode of Mad Men to me!

Apparently, the hospital had an entirely different time line of events.  When she finally revealed the 16 gauge needle that was to pierce my now slightly jaundiced looking skin (from all the iodine) I have to admit my mouth fell open a bit.  To her credit, she didn't give me a moment to hesitate and she shoved that tree truck right into my arm until it disappeared and before I could protest.  Wow.  It was a big needle.  Google it.  16 gauge.  Not fun.

Of course, since the whole and drainage system she had now created in my arm could roughly service a small restaurant, the blood let out in literally 6 minutes.  It took Anita longer to pick out her shoes this morning than it did for this procedure to come to completion..  Great work, right?

The funniest part of the whole thing was watching the nurse slink away after she'd treated my arm for the bleeding over to the nurses' station with the bag of blood in her hand.  It was almost TOO nonchalant, the way she just plopped that sealed bag of my blood into the bio hazard disposal bin.   It made me kind of sad.  I fought for 4 years and went through HELL to accumulate enough semi-healthy blood that they just drained and so unceremoniously disposed of.  That blood deserved a much more heralded end than the one it received.

So that's where I am.  On our way home, I actually did start feeling a bit woozy from having lost blood (Anita drove back from Philly).  I have another session of blood letting in 2 weeks and they'll check the toxin level at that point.  Then we'll see.  I am growing weary of the uncertaintly involved in all of this now.

Before, I had assumed that 2/11/12, the one year anniversary of my transplant would be the final marker.  The last time I would have to keep track of how I was feeling.  Somehow, things got out of control.  I got WORSE after that date and have yet to recover.  I met a nice lady while waiting for Dr. Stadtmauer who also had a stem cell transplant and was THREE YEARS into having complications.  She's much stronger than I am because if I have to do this for 2 more years and STILL not see a light at the end of the tunnel?  You might as well put me in a rubber room now.  But I guess I'll save that sort of anymosity for my explanation as how I got to phlebotomy.

I can't wait for baseball season!  Let's go Yankees!

Late Night Ramblings

“When everyone else goes home, you’re stuck with yourself” – Layne Staley

 

You know, I’m not as big into the grunge/depressed music scene (though I still appreciate it), but Alice in Chains will have always played a deep roll in who I am, for better or for worse.

The doctor is encouraged by my progress after my bone marrow transplant, but the after effects are absolutely horrifying.  On Thursday, it was decided that I need a week off from work just to regain my strength.  I’m hoping that I get the rest that I need, but this insomnia thing isn’t exactly helping.

For some reason, Cinemax keeps showing Robocop and I’m totally OK with that.

One of the shortcomings that I have now is extreme fatigue.  It’s costing my footing at my job and time with the ones that I love.  Recently, I missed the Christening of one of BEST FRIEND’S son.  The day of the Christening, I woke up at 3:00 in the afternoon.  It wasn’t fair and I’ll never get that back.  She and her husband (also a great friend now) will be in my life for the rest of my life and I feel like it will always be a stain on our relationship.

Have you SEEN the pictures from my wedding?  Can you imagine a more beautiful bride?  People that know me (and know what I look/act like) see a picture of my wife for the first time and their first reaction is always something to the tone of, “How the eff did you pull that off?”  My response is and always will be, “I have no idea and I don’t deserve her.”

Is anyone else rooting for Newt as much as I am?  I mean, it’s not everyday you get a family values candidate on his 3rd wife.  I’m a little concerned that if he should win the presidency, with the economy ailing the way it is, he’d be inclined to leave it for a younger, more healthy economy.

So, after about 5 consecutive years of just absolute mismanagement by the Dolphins culminating in them courting a head coach while still actually having a head coach of their own,two of the biggest Giants fans I know encouraged me to return to the team of my youth, the NY Giants.  I’ve been a Giants fan all season and let me tell you, this is by far the best football season of me life.  THANK YOU!

There are times when I miss some of the other livejournal/internet friends that I had back in the heyday of blogging and whatnot, but I would not be willing to trade any of them for the ones that made the leap to ACTUAL friends.

Seriously, Robocop is amazing.  DEAD OR ALIVE, YOU’RE COMING WITH ME!

One of my better friends had laser eye therapy treatment surgery so now he doesn’t need glasses.  Is it wrong for me to buy him a pair of fakes glasses so I’m more comfortable looking at a familiar face that I’ve seen on and off since I was in 2nd grade?

My best friend as a child was just on Jeopardy.  He won something like 8 games in a row and 200K+ thousand dollars.  His mom taught me how to dive in his pool when I was a boy.  This story has been told 29803984230984 times over the 2 weeks Jason Keller was on Jeopardy.  To the same 4 or 5 people.  There are about 4 or 5 more people that hate me now.

I’m getting a little sick of the storylines on Glee, but I will always love what it represents.  Inclusion.  For everyone.  Oh, and I loooove the songs.

I try to pretend that I’m some sort of moderate progressive, but if you look at my twitter feed, it’s fairly apparent that I’m a huge liberal douche.  And a huge sports fans.  I guess both are true.

I’m serious, you need to go to my Picasa page and look at 9/17/2011 and the pictures of my wife.  I’ll wait…. …. …. ….  WHAT IS THAT BEAUTIFUL WOMAN DOING WITH ME?!?!  My face is like 8 different colors since my BMT!  I’ve even grown a beard to hide some of the disgusting.

Robocop is now over.  Sadness begins.

Some Ben Stiller movie is on.  If I knew where the remote was, I’d change the channel to SportsCenter and watch more highlights of the NFC Championship game!

One of my friends from work is leaving and moving to Texas.  Huge blow.  It took me by surprise.  I thought my core group of friends at work would be together for years to come.

One of the main selling points of us moving into this apartment was that we thought we would be only 20 minutes away from two of my best friends.  Turns out, we’re only about 12 minutes away.  They’ve already saved my life once.

As liberal a douche I am and as obvious as my vote is going to be in November, I’m not super pleased with our President.  He’s watered down many of the promises he made 3 years ago and a good number of the people in ranking positions in the administration had A LOT to do with everything wrong with the financial system.  Maybe Tim Geitner and Larry Summers aren’t the right people to reign in the banks?  That would be my first thought.

I haven’t actively been involved in fantasy sports for a few years due to illness/marriage.  I’m really hoping to dive back in and make a difference.  Obviously, that’s not going to happen.

Too early for flapjacks?

I think Coming to America is my favorite comedy of all time, but my favorite actor in comedies is and always will be Bill Murray.  Your favorite actor should be Bill Murray, too. 

I’m about 2 weeks away from the 1 year anniversary (my Onocologist refers to it as my new birthday) of my bone marrow transplant.  I wonder if we’re going to do anything to acknowledge it.  I can’t believe it’s been an entire year since this process starts but at the same time, it’s been one hell of a year.

I’ve never been closer to my sister in any period of my life than I am now. I think much of that can be attributed to my illness and the fact that everyone loves my wife and that always gives me a bump.  Either way, I’ll take it.  Nothing is more important than family.

People who take karaoke very seriously and don’t embrace it for the glorious public self-ass-making that it is are just full of themselves and need to lighten.

With the meds I’m taking combined with my general lack of motion, I’m the heaviest I’ve ever been.  By far.  I’m hoping that I fix that this year.

My brain is ceasing to function, I better wrap this up.  Good night.

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.