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.