Vanity

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

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

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

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

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

Sometimes you need a cure for the cure!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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I Hope the Leaches are Fresh Today

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

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

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

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

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

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

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

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

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

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

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