When great is just being normal.

While most people are looking for something special to punctuate their lives, at this point I'm just looking for a sense of normalcy.  I'm looking for a brief respite from fighting to just feel normal for a change.  The few chances that I get at it make me feel great.  The main problem is happens to be that the opportunities to feel like me are running few and far between.

On a normal day, I wake up at about 9:30 and take engage in my morning ritual.  Most people have the SSS (shit, shower, shave), I have an added S for Self medicate.  I throw on my "i feel sick" robe and sit down by our TV.  If I'm feeling extra sick,  I climb back into bad with my beautiful wife and see if I can avoid falling into her trap.  You see, once Anita senses that I am back within her reach, she sets the trap.  She'll have me wrap my arm around her and she rubs my head.  If she's able to execute it right, we're bypassing getting up, eating, getting ready, and going straight to 5 hour nap mode.  She's so evil!  She knows how much I hate wasting away in bed but she doesn't care, she just wants the snuggle for her own agenda!!!!  But I digress

Normally, after I wake up , I flip between the news and Sportscenter.  This way I know if there are attacks on the way from Iran or Mike.  Once I am versed on the sports and news of the day, I get ready to... Wait.  That's basically what I do.  Isn't that miserable?  I basically have to stare at the clock to know when to take my pills, when to awake, when Judge Alex comes on and THAT'S it.  That's the vast umbrella of my responsibilities.  Aren't I a bit more than a watchgazer?  Just waking up, spend 15 hours doing almost NOTHING of consequence, and then here my phone beep to let me know it's sleep time.  This pattern has seldom deviated from and it seems as though every time I do deviate, while the activity feels great at the time, depending on the activity I might suffer for it for months.  This routine is seldom broken and each time I try to and fail, anger, frustration, and sadness well up in me.  I've been going through this stuff for more than a year now, How is that possible?  Aside from this disease (and now the weight the cure has burdened me with) afflicting me on and off for the last two years, I've really been a relatively healthy person.  It's just that when things go wrong, it seems a lot worse.  When most people push them self to the limit, they get better and their body's get stronger.,  i have the exact opposite effect.  My body absolutely fails and I regress.  I get sick.  I'm bedridden. Worst of all, I'm mentally annihilated.

But now...  What I'm going through now is completely unprecedented.  I've never had so people either say or imply the word 'setback' to me.  Sometimes I become utterly frustrated with what seems to be the fact that every time I try and put a date on when I'm going to be at least feel well enough to go back to work, by body reminds me i'm not in charge.  Nothing makes a recovering patient feel less in control this circumstance.

I guess my biggest worry is just when.  When am I going to feel better?  Everyone keeps warning me not to put any timelines and let my body heal at its own pace.  I am also scolded about going back to work last year against better medical advice.  I'm just sick of it.  I'm sick of seeing everyone else living and me just hanging around.  Facebook has really destroyed me.  I see everyone so happy.  Spending time with their loved ones.  Traveling to all different places.  I WANT TO DO THAT stuff.  I don't know, I guess I'm just losing hope.  I'll have to find some somewhere.  blurgh

Review: Drift: The Unmooring of American Military Power

Drift: The Unmooring of American Military Power by Rachel Maddow

My rating: 4 of 5 stars



Does it count as reading if Ms. Rachel Maddow is reading it to me herself? Whatever. I got a free trial from Audible and chose to listen to Drift and have been loving it. I thought I would be reading a book about the expansion of executive powers over the last three decades. So far, through chapter 8, all I've really come away with is that Reagan was a TERRIBLE TERRIBLE president for the little people as he set many MANY bad precedents. I'm always on board for some Reagan bashing.



View all my reviews

Thank goodness for Pushpita Bandyopadhyay

I have basically been immobile the last two days.  I have been trying to be more mobile and active to try and get my body ready to get back to work.  In this effort, I went to a game night at my best friends' house on Saturday night.  I was very conscious of how much energy I was trying to conserve and what food I was eating to maintain myself.

I didn't even see it coming.  The next two days were filled with so much pain and fatigue, I could barely get out of bed.  I have been so much pain that I've basically went through my pain killers.  I'm done.  With REALLY strong narcotics.  This is the longest episode of prolonged pain that I've ever had.  I need help just to get up.  I'm basically a mess.  If I'm in excruciating pain tomorrow, I don't even know I would be able to do.  It's not like the doc could call in the prescription for narcotics.. That's illegal.

I don't know what to make of this latest episode.  My hands are shaking harder than they've shook in a while.  My joints CRY OUT  in pain every waking minute. 
I feel so listless.

I've been trying to detach myself from what's going on, but I find it difficult.  I'm trying to frame what I'm going through as an experience as opposed what I am.  But I'm finding it difficult.  And the more I think about it, the more I think I've changed for the worse.  Some of what made me ME is gone and I fear that I will never gain it back.  Worst yet, it's been replaced by this listless, joylessness.  Just marking time and not enjoying.  Not cherishing time with loved ones like I should.  I would say it's a funk, but it's been going on for far too long.  The only things that make me feel REALLY happy inside right now are my sister's kids.  My god.  Just to be around them when I can.  To have them sit in my lap with their scrawny little arms wrapped around my neck.  To have Ella ask me about the world (and subsequently have me lie to her to make sure she stays away from boys until she's at least 30).  Or to see how imaginative Cameron is when he plays.  It is what life is supposed to be.  It's why I understand why my sister is the way she is.  She doesn't wear expensive clothes.  She doesn't go out.  She doesn't cook too often..  She sometimes has issues with her job.  But to come home to those two every day, I'm sure every day might not be as great as the time that I have with them, but I can bet you that if you ask her, she would tell you the good days ALWAYS outnumber the bad with her family.  What else can you ask of life?

Of course, what makes me most happy is my wife.  I can't deal with the way she looks at me and caresses my face.  I've become such a wretch.  Such a shadow of the man I know she intended to marry, but there she is, always ready to help me out, or to say I love you, or to just hold me.  The love I see in her eyes  and embrace every day is what keeps me going to the next day.

And thank goodness for my mother.  This past Monday was absolutely impossible for me to deal with.  I called her at noon and she literally stopped what she was doing, came over, took me to my doctor's appointment and then helped me buy some groceries for the house (we were missing some essentials).  I don't know a lot of moms that could be on call within the hour.  It meant so much to me to go to that appointment and I was afraid I'd have to miss it.  She really savd the day.

I have another appointment on Thursday.  Let's hope we can fix some things.  I can't keep going like this.  I can't keep existing like this.  I need to feel.  I need to experience joy outside of my immediate life and I don't know how to turn that back on.  Am I depressed?  I can't imagine someone with my attitude is depressed, but then again.. WTF do I know.

Ugh.

Up and Down

You know, I was never one for roller coasters.  I mean, I've been on my share of emotional roller coaster relationships , but that's a blog for another time in another circumstance.  I'm talking about physical roller coasters at amusement parks.  I've never really liked them as I have a fear of heights and I don't really like not knowing what's going to be around the next bend.  Funny enough, I think it's for these same reasons that my wife actually REALLY ENJOYS roller coasters and will stop at nothing to ride one if she's within visual range.  She is a rock and is afraid of nothing.  I guess that makes me the spineless wimp that's afraid of everything and we come together because opposites attract.

I digress, anyway.  This photopheresis thing seems to be working, but the results are kind of like rinding a roller coaster.  I've been to treatment five times.  One time, I felt so good that I actually went to the treatment completely alone.  Drive myself down to Philly and back without any problems.  Another, earlier time I fell asleep before we even exited the parking garage I was so exhausted.  I ended up sleeping for the rest of that day and into the next morning.  Completely out of character for me to sleep late.

So, now my body is a bit more accustomed to the procedure, yet the results are still somewhat like riding a roller coaster.  Overall, I would definitely have to say that I feel better.  I feel much better and what's more is that I feel optimistic.  I think, as slow as it's going, I'm getting to a better place and that's all I want.  How crazy is it that I'm living my life right now just to get back to work?  Who knew being a semi-productive member of society could mean so much to someone.

Unfortunately, with the way the treatment has been going, the after effects have been somewhat unpredictable (like a roller coaster).  Last week, after BOTH treatments, I felt fantastic!  Great enough to see some people that weekend and have lunch with Mike.  I even called my boss to let him know of my progress (a phone call I've been avoiding as to not have to convey such massive failure).  This was looking up.  I was starting to see people.  My life was slowly starting to take shape again.

Then this week's procedure hit me.  The first one was fine.  I came home and was a bit tired, but certainly not OVERLY fatigued.  After Wednesday's procedure, however, I was completely annihilated.  I've been reeling for two days now with aches, pains, and overwhelming fatigue.  My hands have been tingling all day like they are not getting enough blood and that makes me nervous. 

I'm hoping that by tomorrow, everything is at least where it was.  I have a big weekend coming up and I'm nto going to let some GVHD ruin it.  Right?

Ugh..  When will this all end??  When can I get back to being me?

Can you believe that she's been with me for five years?!?!?

So wow. Anita and I have crossed a milestone... We have been together for FIVE effing years. Anyone that knows me knows that being around me as much as she has for five years, she deserves some sort of award. I mean.. FIVE YEARS... That level of intimacy is Joe LaPlaca territory.. With slightly less taint tickling (in her defense.. That man knows how to tickle some taint).

All jokes aside, I've never felt so loved, so happy, so at peace with myself as I have since we've been together. And while this is OFFICIALLY the last time we will be celebrating our dating anniversary, I just wanted to recognize how amazing the last five years have been.. With a little help from our friend Elton John...

It's a little bit funny this feeling inside

I'm not one of those who can easily hide

I don't have much money but boy if I did

I'd buy a big house where we both could live

If I was a sculptor, but then again, no

Or a man who makes potions in a travelling show

I know it's not much but it's the best I can do

My gift is my song and this one's for you

And you can tell everybody this is your song

It may be quite simple but now that it's done

I hope you don't mind

I hope you don't mind that I put down in words

How wonderful life is while you're in the world

I know that it hasn't been so easy lately, but I know you believe when I say that you are all my reasons.  Everything I've been trying to do is for you and for us and the future.  I've loved you for so long, I don't remember myself as anyone else but the person so deeply in love with you.  And that ain't bad. Stay black!!

Happy final April 10th!

Not so Great Expectations

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

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

Expectations.

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

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

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

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

Fucking Myelofibrosis.

Against My Better Judgment

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

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

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

Let me set the stage for you:

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

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

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

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

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

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

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

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

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

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

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

I seriously laughed for the next five minutes.

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

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

Here we go again tomorrow!

Here we go again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

See you on the other side, Ray.

Vanity

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

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

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

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

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

Sometimes you need a cure for the cure!

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

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

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

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

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

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

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