You Can See The Sun Shining if You Really Want to

Any that's spent 5 minutes reading my blog knows that over the last several years, me living out that year wasn't always as certain as it should be relative to someone my age.  I've only had close encounters with the possibly of not seeing the sun rise the next day maybe about 4 times, but other than that, my basic survival was in question for the last 3 years because of my failing health.  What have all these brushes with death taught me?  They've taught me the importance of regret.  They've taught me the importance of love.  Most importantly, I've learned that there are only a certain number of things in life that I can actively control.  Sometimes a shitty situation is a shitty situation and you've gotta take it for what it's worth.  Sometimes, you've gotta concede defeat in order to continue the war.
Lately, I'm having difficulty telling who the good guys are.  I guess war is a bad analogy when trying to describe your life, but if nothing else, I've been battling, trying to get up the hill, and back to myself.  Of course, I would have absolutely zero chance if not for my incredible (perceived) support system.  For the past few days, I think my neuroses when it comes to the people around me has been getting the best of me.  I think it might be a product of the fact that in one way or another, I don't remember really being alone for any extended period of time for the last 5 years.  I've always had someone around or at least close by because of the seriousness of my health. Unfortunately , it seems as my physical health improves, I might be exposing my frayed mental health.
This all started when Anita left a week ago to visit her about-to-pop pregnant sister.  In the weeks leading up to her flight, I joked around with her that she's clearly making a terrible decision and who knows if I could survive by myself.  I'm beginning to think those jokes were really some sort of panic attack by my subconscious.  What's troubling of that I haven't even been ALONE for any extended period of time, yet.  Really, since she left a week ago, I think I've maybe spent about 30 hours or so by myself.  Thanks to a few of my better friends and my nephew's birthday, I've been spending most of my hours with other people occupying my mind.  Tonight marks the first night that I will be in a stretch of a week by myself and if tonight is any indication....  Uh oh.
I don't really know what's wrong with my head.  I don't recall ever being this neurotic.  I'm actually complaining about the sincerity of the people in my life while also writing (typing?!) that in the 2 weeks that my wife is scheduled to be away, I've had or have scheduled things to do with other people on every day but 4.  You would think a 33 year old man could survive 4 days alone, right?  Only 2 of those days are consecutive!  Pull it together, man!
So what I'm trying to say I know I'm crazy, but am I?  I've always been adept at reading people and assessing the situation, so either what's going on here is that my recovery has somehow caused a short-circuit in that ability OR there is an actual issue with the people that I count on.  The people that I REALLY need.
I know that some of the signals I've been receiving in my head are simply just the crazy going out for a walk.  The other day, I friend was tagged in a photo embracing another friend and it triggered a pang of jealousy.  I couldn't understand why I wasn't privy to such embraces.  From that moment on, I basically lost control of my sense of confidence.  Even after I came to my senses and remembered the COUNTLESS times said friend and I have really had no issue with tactile affection and there are numerous pictures of us doing so.  Displayed.  In my apartment.  All the time.  Still, to continue the metaphor, you can't call back the dogs of war. 
I started to see it everywhere.  My family.  I spent time at my sister's house both for my nephew's birthday and for the party for his birthday.  I don't know why, and it was nothing that anyone did, but something didn't feel right.  Somewhere around the time I started dating Anita, my relationship with my sister changed for the better.  Before we had a cordial relationship, but not really as loving as you would think a brother and sister would be.  I keep linking it to me dating Anita, and I'm sure that played a part in it, but really my illness as difficult as it was, had the happy side effect of really bringing my sister and I together.  Since that change occurred I've always felt at home whenever I've been in her house.  For some reason, when I visited them for my nephew's birthday on the 8th (I actually came the night before because I wanted to bake some things for him on his birthday - he loves that) I had this uneasy feeling.  At this point, I can only attribute it to my own ridiculousness, but that doesn't mean it wasn't there.  In fact, last night I had to get some prescriptions filled and I found out the CVS by her house wouldn't tell me if they carried the meds I needed.  I should've gone to the CVS and inquired in person, since the drugs I take are pretty powerful and subject to abuse by pill poppers, I think the pharmacist was just being cautious.  Much to my dismay, my first reaction was relief.  Relief that I would have to go home and be back in my "safe zone."  About an hour after I told my sister that I needed to go home and refill my meds at my local pharmacy, I realized that I had enough medication to last the night and the next morning.  In order to follow the prescription, I would need to be home by noon-ish .  I wrestled with it.  Part of me still wanted to go home.  Luckily, my better angels prevailed and I told her that I could stay the night.  My decision to stay was even protested by my mother who said that I need to stop jostling (I don't know how I jostled, any uncertainty all played out in my head) and that she had already moved her bags to the door and for some reason, that meant the decision to return home was final (I brought my mother).  My initial instinct was to give in and go home, but I fought it off.
I've been fending off similar feelings with people that are less attached to me by blood.  I think I've been perceiving really minor happenings into signs of problems left and right.  I find myself being more polite, as I would with a lesser friend, with some people.  I find myself challenging friends over nothing.  Over things that we've been chiding each other with for years and years.  For more than a decade.  I find myself feeling as though I'm imposing when I have invited myself to events with my friends numerous times.  It's almost expected at this point.  If someone is doing something, usually, anyone can jump aboard.  Why am I feeling so secluded?  I've spent the last week SURROUNDED by loved ones and I can't shake this feeling.
Am I afraid that as I get closer to the other end of this journey that I am so changed that the people in my life won't recognize me anymore?  Not value me anymore?  So much about me has been forever altered by this experience.  There are so many things that I wish could go back to the way they were (like my weight!) but I'm realizing more every day that they can't.  This thing that affected me has left its imprint.  In exchange for these unchangeable alterations, I get to live much longer than I would have without them.  Was it worth it?  What's worth feeling so alone?  I know that I'm crazy, but have I really gone THIS crazy?  Am I questioning my self worth?  As I get better, am I still me?  I'm not sure I want to answer that question.

Everyone has a sad story. It doesn't excuse anything.

I've always been able to brush things off.  Everything.  At least, I've always been able to push things to the back of my mind and brood on it when I'm alone listening to the angry music I thought I gave up on long ago.    I've had my share of problems.  I've made my share of mistakes.  I've seen my share of curve balls.  Every single situation, I've dealt with and moved on in one way or another.  From bad breakups that cost me friendships to problems growing up without a real father figure to looking for attention in all the wrong ways.

I'm fucking 2+ years out from this stupid bone marrow transplant and it still defines almost EVERYTHING I do.  I just spent a weekend with 2 of my absolute best friends in the world and I had to sleep for the equivalent of an ENTIRE DAY just to regain my strength.  What did we do that was so taxing on my body?  Oh, just walked around a museum.  Went out to eat.  Argued baseball with strangers. In bed around midnight.  Crazy, right?  When is this going to end?  People tell me to revel in the small victories I have here or there but what?! How?  How can I do this when I expected so much more? How can I do this when I want so much more?

Everyone tells me to compartmentalize, great advice.  Now try it.  Seriously.  Try and separate yourself from something that rules your life.  Imagine having a shitty job with an absolutely shitty commute that pays a great salary.  Is money going to fix the fact that at least 5 days a week you're in hell? If you were looking for another job, wouldn't those factors come into play?  The difference with me is that I don't have another choice.  This is all I got. My entire existence is ruled by this thing.  This decision everyone and I made a long time ago.  We all thought it would be over now.  We all thought I'd be back to me.  I'm told to "just realize I'm living a different impermanent existence".  To blame the disease and not myself.  You know what?  It's not that easy.  How long is impermanent impermanent?  This is going on TWO YEARS of issues.  TWO YEARS? If you stick a needle in someone's arm, at some point no matter what they're going to become an addict.

You know what's funny?  During this recent Presidential election season, we were bombarded with slogans demonizing so-called "takers" and societal "moothers".  When do I fall into this category?  What does the clock start ticking?  When do the whispers start among my family friends that I'm somehow milking this?  When does public opinion sour, if it hasn't already.  How fast do I have to run to get away from that?  How many pills much I swallow every day to avoid the jagged little pill of the inevitable backlash.  I see everyone's lives progressing without me and I hate it.  I hate it to the point where I decided I need a little break from social media.  Seeing everyone else be so happy without me can't be good for my psyche.  I don't know.  This is so difficult.

Maybe I'm just over exaggerating.  It's just so hard to live each day without feeling helpless and shame.  Unfortunately, I'm afraid this might never end and I'm not entirely sure how to deal with it.

Feeble

I feel stuck.  I feel caught.  I feel stagnant.  A few months ago, I'd have several weeks surrounding a few days where I "crash".  My body gets so worn out that I basically can't move to even get out of bed.  Normally, they would last a day, maybe 2 at most.  Well, the latest crash that I've been trying to get over has lasted more than a week.  We're almost ten days into it.

Talk about an effing setback.  For the last 10 days, I've LITERALLY slept 10+ hours each night except for one night that I was was awake almost THE ENTIRE night just writhing in pain.  February 11, 2013 will officially mark the 2nd anniversary of my transplant.  If someone had told me I'd still be this deep in shit, I think I might have reconsidered it at the outset.

I was nervous a few months ago when I met the lady that said she was 3 years deep and still experiencing some complications.  Is this what's in store for me?  Every time I think I'm healthy for anything, I feel like I'm yanked back to square one or even pulled back BEYOND the starting line.  The worst part is, I don't, NO ONE knows how to make this any better.  Everyone just keeps dropping obligatory words of encouragement while muttering under their breath that they think I am somehow milking this.  I wish I could trade places with those people for just ONE WEEK.  Just so they might know an inch of the hell I have to go through.

No, that's not fair.  I wouldn't wish this on anyone.

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.

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!

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

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

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

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

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

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

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

Click here to laugh and smile

 

Thank you for your support and kindness, everyone!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here goes nothing.

Quick note about the weekend

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

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

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

 

All good things.

But I Promise You This – I Will Always Look Out For You – That’s what I’ll Do

So, remember my life being a complete crapfest except for the people around me?  My health, finances, and basically life all going down the shitter?  Well, I got a little bit of a jolt in the right direction on my birthday courtesy of my hematologist and the new meds I’ve been taking.

First, let me tell you, the days leading up to my birthday were absolutely marked by failure.  The walls were falling down around me.  Even the day before my birthday, out of the blue, my (sort of) new camera that I bought less than a year ago…  Just stops working.  I mean…  That’s how deep it went.  How the Hell does a camera just randomly stop working the day before someone’s birthday?  I can’t lie, when it happened, I just broke down.  I really did.  I went to the basement and I balled for about 20 minutes.  I just couldn’t believe how badly things were going. 

Even the next day.  My birthday, the only day my doctor could squeeze me in to see him.  And it’s not like a trip to your local doctor; in and out in 45 minutes.  This is a whole trip to Philadelphia and promised to eat up at least 3 hours.  Of course.  So how did it end up?  Well, we left for the hospital around 2:30.  We drove down to my sister’s house and picked her up.  She drove into Philedelphia to the Hospital at UPENN.  Seemed normal enough.  We got there around 4:45.  I signed in, she scheduled me for the lab work.  After about 15 minutes, I was called in to have my blood drawn.  Still no problem, right?  I get called into the doctor’s office at about 5:15.  Still not bad.  We sit in the room and wait for him.  WE DID NOT SEE THE DOCTOR UNTIL 8:00-ish.  I’m not kidding.  Dr. Stadtmauer spends a lot of time with his patients and doesn’t rush anyone and he really is a very attentive and personal doctor.  Of course, the price you pay is that his appointments run late and you have to wait.  On top of that, we were squeezed in and overbooked in the first place.  Lots of fun.  I was so sad.  Our original plan was to have Craig meet us in Philadelphia with my niece and nephew and we were all supposed to have dinner together.  That was all blown up.  We were waiting so long that my mom (a diabetic) had to be given food and juice to keep her blood sugar in check!  I mean, it was unbelievable how long we had to wait.  This broke (by a long shot) ANY previous wait that we’d had there.

So anyway, he comes in around 8:00 with a big smile on his face.  I was the subject of a minor medical miracle and the first sign of hope I’d had since this whole mess started back up in July.  A few weeks earlier when I’d seen Dr. Stadtmauer, my platelet count was an astronomical 1.2M.  It was the main reason why the blood thinner wasn’t working and I ended up with the bloodclot/blood in my lung.  Well, just a few short weeks later on a new medication called Myleran, it had been reduced by almost 400K.  I had also had a blood transfusion of red blood cells the week prior and my hemoglobin count was holding strong at 9.6, the highest it has been in 3 months.  So basically, for the first time since July, ALL of my blood counts moved in the right direction.  I’d definitely say it was worth crying like a little girl the night before because everything was going wrong.  For the first time in as long as I can remember, I feel a glimmer of hope that everything will be all right. 

Dr. Stadtmauer’s prediction is that I will be able to come off the Myleran in about 8 weeks with a normal platelet count and I could be off the new (awful) blood thinner in as little as six months.  Yep.  I could be up and running and “normal” in 6 months.  Wow.  Typing it out and reading it makes it seem even more fantastic.  Let’s hope everything goes as predicted.

Here goes nothing!

When You Love Someone but it goes to waste – Could it be Worse?

I watched Rachel Getting Married today with my mom.  I’ve already seen the movie months ago with Anita and it’s an amazing movie, but that’s not the point of this.  All the drama in the movie aside, it made me feel so awful.  I mean, isn’t that what I’m supposed to be doing?  I’ve been engaged for like 6 months and we are nowhere with planning our wedding because apparently, I’d rather spend time in the ER than planning the rest of my life with the woman I love.  How can this be?  When did it get to this?

I feel so lost.  After this last stint in the hospital and having to spend day after day drugged up on pain killers just to breathe like a normal person; spending my nights injecting myself with other drugs just to keep me alive, I just don’t feel like myself anymore.  I don’t have the desire to do anything.  Nothing.  My friend Mike was nice enough to come over on Monday with his daughter so that we could exchange our Christmas gifts and even that felt forced.  He gave me an AMAZING signed (and authenticated) Dan Marino picture.  It’s absolutely incredible.  And when I saw it, I knew the reaction I was supposed to have, so well, I don’t want to say I faked it because I didn’t.  I genuinely love that picture and it makes me miss my house because I have no place to put it up right now, but I wasn’t as excited as I should’ve been.  I’ve become a zombie.

But I digress.  This wedding thing.  I know that the standard man’s line to wedding planning is “just tell me the date an I’ll be there” but come on!  I’m so much more sappy than that and I’ve been looking forward to all this wedding planning since I decided I wanted to get married!  This past Sunday, I missed going to a bridal show with Anita because I just don’t have the constitution to stay upright for that long.  So what did I do instead?  My mom and sister thought I could do with a change of scenery so we went down to Mou’s house to spend time with her family, specifically the kids.  What did I do?  I fell asleep on her couch.  With the kids running around me, screaming, and everyone having a good time.  I don’t even know why I fell asleep.  I hadn’t taken any pain killers at that point.  I just had a blood transfusion, so it wasn’t fatigue.  I just don’t think I enjoy being awake anymore.  I don’t recognize the person in the mirror, anymore.  I’m supposed to be the fun one.  What happened to all the fun?  Where did it go?  When did it turn into just waiting for the next disaster to strike?

Anita called me after going to the bridal show with her mother and expressed how much fun she had and I just felt awful.  I’m missing out on the best part of my life.  And for what?  For what I ask?

This entire experience is so disheartening.  It’s no wonder I feel so alone; I’m not even me anymore.

What is going on?

So, after certain events this weekend, it's dawning on me just how serious this condition is.  I've gone now as far as finding a support group to help me cope.  The problem is...  Reading these people's experiences with myelofibrosis scares me.  Their lives seem so difficult.  Is this what I'm in store for?  Is this what I have to look forward to?

So much of my life is up in the air right now.  I don't know how to place it all.  I can't figure anything out.  I'm lucky to have as many supportive people around me as I do.  My sister has been unbelievably incredible, even for a sister.

Still, I can't shake the feeling that this is not going to end well for me.  Maybe returning to writing my experiences will help with exorcising some of these demons.  Probably not.  It's worth a shot, right?  I guess my New Year's resolution will be to try and write 1 post a week.  Or at least average 4 posts a month.  Yeah.  That sounds a bit more liberal. 

Let's hope this works.

Mr. Spleen, Mr. Spleen AKA The Lost Summer (Part 2b)

Not all Doctors are created equal, in fact some doctors should have never been created…

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So, where were we?  Ahh yes.. Pocono Medical Center.  So, I’ve been getting platelets all night to stabilize my condition; I remain in the ICU in case something catastrophic happens.  Poor Anita is stuck having to be with me.  Strangely, what I am worried about most is losing my job.  I had missed so many days this year due to this illness, I feared any more sick days and my boss would have it.  Him and I already had a little bit of a “sit down” due to the amount of sick time I was taking from the company and while he understood I was dealing with something completely off the wall, he also made clear his need to have someone he can rely on to put their butt in the seat when he needed them.  What made the situation worse in my head was that I was actually on call that weekend.  The last thing I needed was to be sick that weekend in case something huge had happened.

 

And all the while I was worrying about this… I was actually ill, too… Or so they told me.  The orange juice flowed, eventually my mom came up from NJ, and the barrage of specialists came in; all wanting a piece of the mystery disease that was so far above their capabilities, they must’ve been dizzy in their research.  I don’t remember any of their names, but I don’t remember liking most of them save for two.  The worst part?  The doctor in charge of my condition was a hematologist that wanted no part of my situation from the second he saw my chart.   I don’t remember what he looks like, really.  White man, lab coat, indifferent look on his face.  While having my first conversation with this man, I already know that his main goal is not to find anything out, but to get my platelet count above 50K so he can ship me off.  Now, while the prospect of being stabilized is wonderful, I (and everyone else) was more concerned with the fact that no one knew what was going on inside me and the fact that every time they’d infuse me with platelets, every time they drew blood and checked it thereafter, the count would drop.  When I bring this up to the hematologist, his response was an indifferent phrase to the likes of “don’t worry, we’ll getcha outta here.”  At first I was afraid that I was going to be stuck there forever, now I feared that I’d be given the proverbial band aid and left to fend for myself. 

That first day in the ICU was difficult to deal with.  I was so afraid and so confused and so worried about so many things that I just felt awful.  My mom came in and has no idea as to what is happening which naturally throws her into panic mode.  Anita is her usual calm self, nut her concern is as visible on her face as her smile.  Even more wonderful is dutiful James who basically sacrificed his Saturday night to spend it with me there in the ICU.  Sitting there in my little half room, watching TV with me until he fell asleep.  Having those people around feels reassuring.

What is not reassuring is the massive confusion between the doctors.  They are sending in infectious disease specialists, the douche hematologist, endocrinologists, and various other unidentifiable doctors that all come in, ask the same questions that I am forced to answer again and again; they all poke and prod and press and do whatever other uncomfortable procedure they deem necessary.  Of course, after all the prodding and answers I give them, they all walk out of the room just as baffled as they entered.  Of course, I would expect nothing less from doctors that have had absolutely no experience with my illness that has had no diagnosis for 20+ years.

After what seems like an unending line of idiots, my knight in shining armor (white lab coat??) appeared.  He is the attending physician and while he understands that this may be above his head, his interest is not in setting me free, but in getting to the bottom of whatever was causing the issue.  I remember him very distinctly because he was the only one in that place that made any sense to me.  He was the only one who spoke with any sense of urgency.  I believe his name is Dr. Kemed.  Aside from his doctor clothes, he really didn’t look like a doctor.  Short, pasty-white, intentionally shaved head, even an earring in his ear.  He kind of looks like Chris Daughtry if he had decided to become a doctor instead of a rock star (did I just admit to listening to Daughtry?); just shorter and with less eyeliner.

Instead of trying to discharge me and was the hospital’s hands of this problem child, he insisted that I remain in the hospital for my own safety and that he would try to have me transferred to UPENN ASAP to see Dr. Stadtmauer (the hematologist that had been studying my issues for 3 years).  Great, right?  My prayers have been answered!  Wrong.  UPENN does not accept hematology transfers on the weekend save for acute leukemia patients.  Dr. Kemed and one of his associates said they would see if they can pull some strings and make some phone calls and get me transferred and have this if not taken care of, at least looked at.  All I had to do was sit tight (as if I had another choice).

While these two fine doctors try to call in favors or promise favors or whatever doctors do when they push their problems onto their friends, the douchatologist comes in revealing what we already knew.  With every transfusion, the platelet count increased, but with every hour that passed, the number would diminish.  Great deduction, jack ass.  Tell us something we don’t know.  Please.  Anything.  Have it be the weather, the color of your eyes, your birthday.  Anything to justify the bill your office is going to send my insurance company for this bedside visit here.  Anyway..  Another bag of orange juice was in order and he went on his merry way.  Wonderful.

After a few hours (which was passed wonderfully with more visitors.  Anita’s family was wonderful enough to come in and visit… And bring KFC.  My God, do I love KFC), I learn the results of the doctors’ attempts to parcel me off to UPENN.  Nothing.  There would be no way for UPENN to break with policy and free up a bed for someone not having complications from Leukemia.  Isn’t that just selfish?  I mean, come on people!  I WAS BLEEDING FROM MY GUMS!  Haha.  I’m just kidding.  Totally understandable.  They need to keep beds open in the hematology ward for people that really deserve them.  I would have to wait until Monday to be transferred.  It is Sunday at this point, so one more day without some sort of medical disaster and at least I would be someplace with people that were familiar with my condition.

Monday comes.  More orange juice, terrible hospital food (seriously…  Thank God for Anita’s parents bringing me KFC.  I can’t say that I wouldn’t have survived without it… But I also can’t say that I would have survived without it… You decide), and one final blow to the jugular.  The douchatalogist walks in with a smugness about him as if he had just accomplished some great feat.  Guess what?  The hospital is sending me home.  Yep.  They had brought my platelet count above 50,000 and they could now legally release me.  Doesn’t that sound great?  After an entire weekend of doctors telling me how dangerous my situation is and that any number of normal every day activities can lead to my death, now I get to go home and partake in those normal every day activities!  Hooray!

Needless to say (but I will), I am completely horrified by this news.  What kind of practice is this?  Scare the pants off the patient into believing anything beyond the hospital walls can kill him and then…  Release him beyond those hospital walls?!?  I am horrified while everyone else involved on my side is furious.  We don’t even get a say in the matter.  One of the doctors tries one last plea to UPENN to no avail.  With a platelet count above 50,000, no one even thinks my insurance would pay to have me transferred to UPENN because.. Well.. They legally don’t have to.  Ain’t our health system grand?  Of course, in hind sight nothing happened and everything worked out fine, but at the time, it was just absolutely infuriating. 

So, I am released.  A weekend sojourn to the Pocono Medical Center was concluded only to be followed by what I fear to be endless out patient testing at UPENN.  I toy with the idea of writing an email to Dr. Stadtmauer at UPENN asking (read:begging) him to admit me so that I (and whoever else.. or rather EVERYONE else involved) would not have to travel between either The Poconos and Philadelphia and/or my mother’s house in Somerset, NJ and Philadelphia.  Also, if I was going to be an outpatient, I would have to return to work and that would just have been a scheduling nightmare.  And for what it’s worth, I just wanted this whole thing to be over.  Spending another who-knows-how-many days driving back and forth to UPENN to get whatever tests they wanted me to take would drive me crazy.  I just wanted to stay there, let them poke and prod me for however many days they deemed fit and have this be done with once and for all.  Through the grace of my job and my boss, I would be eligible for short term disability for up to six months (granted I didn’t think I’d need anywhere near that long) and not have to worry about my salary or losing my job.  It just seemed to make sense.  Let’s just hope Dr. Stadtmauer sees it the same way.

I write the email first thing when I get home.  If nothing else, with all the thoughts of danger swirling around my head, it feels good to be home.  It feels good to sleep in my own bed.  It feels good to be surrounded by my stuff and not tubes, dinging monitors, nurse call bells, and strangers in white lab coats.  Much to my amazement, the next day Dr. Stadtmauer replies to my email.  I wrote him a long plea trying to tug at his heart strings in explaining my situation and my frustration with my condition seemingly deteriorating.  The email must’ve translated to two and a half pages of whiny drivel.  Maybe even more.  I’m actually surprised he read it.  I wonder if he made it all the way through.  Thankfully, his reply was short and much more succinct.

He simply wrote that he remembered me and to bring my bag to my appointment as he was going to have me admitted to the hospital and we were going to get to the bottom of this starting that following Wednesday (7/15/09) at 12:00pm.  Success.

 

To be continued…

Mr. Spleen, Mr. Spleen AKA The Lost Summer (Part 2a)

Not all doctors are created equal.  In fact some doctors should have never been created

 

So here I am, driving to the ER against my will.  Almost as soon as I turn they key, I change the radio station to WCBS to hear the Yankees game.  Before I hear one solitary word from John Sterling’s mystical voice, Anita’s protests are met immediately by me explaining to her that I was obviously deathly ill and the only thing that had a chance at keeping me going was hearing a John Sterling homerun call.  She lets me listen to the game.  She loses some respect for me too, but she lets me listen to the game.

We arrive at the completely overcrowded ER and have difficulty finding parking.  What are these people doing here?  Don’t they know that I’m having a serious problem and waiting in line is NOT something that I’m into?  Whatever.  So, we walk into the ER and go to the registration desk.  I’ve been to the ER before, so it didn’t take that long.  The one HUGE mistake that I made when registering was when she asked me to gauge the amount of pain I’m in, I declared I was in no pain.  This will inevitably come back to haunt me.

Anita and I take a seat on the far side of the ER waiting for my number to come up.  I brought a bottle of Gatorade (or G, rather) with me to keep me hydrated.  Of course, Anita wants none of that and is drinkless.  She would later regret that.  One hour passes.  This is not abnormal for an ER and it does not raise any concerns in either of us.  We pass the time blabbering to each other only to be interrupted by me checking the Yankees’ score on my phone.  Finally, we are called into the triage nurse’s area.  As she was taking my vitals and asking me the reason for my visit, I ask Anita if I can have a sip of my Gatorade.  Before I can take the cap off the bottle the nurse scolds me as if I’m a little boy to not eat or drink anything until the doctor sees me.  I really REALLY plan on listening to her.  Seriously.  I do.  She issues me my pretty little hospital bracelet (an uneasy staple for the next two months) and we return to our seat.  Another hour or so passes (as does plenty of G intake) and we are not quite sure, but it seems as though some of the people that have registered after us have been going through the magic ER doors before us.  We aren't completely sure of this, so we ignore it for now.  Another obvious mistake.  A third hour passes.  Now it is plainly obvious that people that have registered before us have been admitted to the ER before us.  We realize what we did wrong.  When we were with the triage nurse, she asked me to measure my pain on a 10 point scale.  I wasn’t in any pain, so I said that my pain was a zero.  Let this be a lesson to you, kids.  Honesty does not pay off in the end.  By the time we actually went through the doors, it must’ve been 1:00am.

So anyway, we finally get into the ER and we’re both waiting for the nurse.  They immediately start me on an IV and draw blood.  We sit and blah blah blah for a while until the doctor arrives.  The doctor walks into the room, closes the door, and asks me what’s going on.  He’s not exactly intimidating, but he’s not exactly benign, either.  A middle aged man with a scruffy face with no distinguishable marks except for the military tattoo peaking out from under his doctor’s scrubs.  Sure, this wouldn’t scare other people, but I’m squeamish and tattoos are scary.  Especially on doctors.  Am I alone here?  Anyone?  Is this thing on?  Anyway, I’m not that scared because last time I was in this ER, I had the same doctor and he was great.  I explain to him that I had been bleeding from my gum for 2 days and I had noticed some petechiae on my feet and Anita noticed it over my body in general.  As soon as he sees the density of the petechiae on my feet, he looks up at me with a look of minor horror.  He looks at my mouth and sees the extent of my bleeding and tells me that there might be an issue with how many platelets are in my body and that he’d have to check the bloodwork and see if I will need any sort of transfusion or anything.

This is not completely foreign to me.  I’ve been having trouble with my blood since I was about 5 years old.  No one has been able to really figure it out (until recently) and I wasn’t completely afraid of the results.  I go through periods of low blood counts from time to time and I figure that this would not be any different.  I feel no fear at all.  Yet another mistake.

The doctor returns again after some time with another look of worry on his face, this time one more serious than the previous.  He looks up at me saying that my platelet count was around 2000 and that I would need an immediate transfusion of platelets.  A normal platelet count is between 150,000 and 400,000.  Apparently, at 2,000, a person is in danger of just bleeding out through his capillaries and stuff like that.  Real good news.  This was definitely something I was not suspecting.  I became worried now because I was on call from work this weekend and could not feasibly stay the entire weekend at the hospital.  Anita yells at me for not just worrying about my health.  Hey, when you’ve missed as many days over the last fiscal year due to this crazy illness at a job you’ve only had for 2 years, you’d be worried, too.  I convince Anita to go back to the car get my work laptop and the on call phone.  This way I can charge them and be ready the next day.

Now the waiting game, or rather another waiting game.  Apparently, the platelets had to be special ordered from another hospital because they didn’t have any there (really?!?) and I was waiting for a room to clear up in the ICU because that would be my home for the weekend.  It was not until what felt like 5:00 in the morning until they found a room for me and I was transported and started on the transfusion.  The bag, connected to me through the IV, was full of this disgusting, gritty, orange juice looking liquid that was slowly seeping into my blood stream through the hole in my hand.  Not that I could physically feel anything, but it was just…. I don’t know… Icky.  Not to mention I had to sign all these waivers absolving the hospital of any liability over contracting any number of diseases from the flu all the way up to the mighty HIV.  Doesn’t exactly instill a lot of confidence.

The worst part about this was telling my mom.  At first, I didn’t want to mention anything, but I decided on the car ride there that I would tell her in case something bigger actually did occur, it wouldn’t be as much of a shock.  In the end, I don’t think it made much of a difference.  Really, of everyone that’s been involved with this situation just over the last 2 months, she easily deserves the most credit.  And that’s saying a lot because everyone involved has done SO MUCH, but I don’t think anyone had worried, struggled, or felt the sting of everything I was going through as much as she did.  She’s a champion for having braved the storm as much as she did; I don’t know if I would’ve have been able to do it given her place.  She may not seem like a pillar of strength to look at her, but I don’t think I would’ve been able to handle the magnitude of everything I went through were it not for my mom holding my hand through everything telling me that it will be OK in the end and to trust in the doctors and in God and in the future.  She’s not a pillar of strength, she’s a mountain of it.  But I digress…

So here I am, wheeled into the ICU like some car crash victim, spleen enlarged to somewhere between 22-26CM (normal size is 8) and a platelet count so low that doctors were afraid of blood vessels bleeding out into my brain, rendering me a vegetable.  If they saw me on lazy weekends, they’d see it’s not too much of a change from my regular behavior.  I try to remain calm and strong, but inside I’m freaking out.  My condition has never put me in this much danger and I’m wondering if this is a signal of a worsening of the disease.  It would’ve been befitting my luck; A job that I like with people that I love, A woman that I want to spend the rest of my life, my own house, yeah.. My life’s almost complete.. Why not add a life or death battle with a disease no one has been able to identify for 25 years to the mix.. Just to balance things out.  Right?  Ugh.

If my recollection serves me right, I receive two bags of magic pulpy orange juice that brings my platelet count just about 10,000.  Still in the danger zone, but in any imminent danger.  Once morning hits, I begin being visited by doctors, of all shapes and sizes.  The worst of these is the hematologist.  I don’t remember his name, but it was clear to me that he was solely interested in stabilizing my condition and getting me the hell out of his hospital.  Great attitude to have, douchebag.

 

This is going to have to be continued in a 2b sort of way…  I feel absolutely exhausted…  I’m sorry.  I didn’t even proofread.  Bleh