Welcome to the Shit Show

It's amazing how one thing going wrong in your life can so easily turn into a titanic sized clusterfuck.  When someone turns on the light, everything that you've been hiding in the dark starts casting a shadow.  Sometime, shadows make it just as difficult to see as the dark.  This whole thing started because I was sick.  I was sick beyond what I could handle.  Beyond what anyone could handle.  Beyond comprehension.  Every time I mention to someone that I've had a stem cell transplant, their eyes bug out of their heads.  "But you're so young," is the universally accepted response followed by other useless platitudes.  It's true.  I was young.  This final process started when I was just 27.  27.  I can't even imagine it anymore.  When they figured out what was wrong, I was given almost a year to process the fact that a transplant might be in order.

But really, nothing could prepared me.  Nothing could prepared us.  After I came home, I remember my friend came over and as soon as she saw me, she threw her arms around me and hugged me as hard as I've ever been hugged.  I have to admit, I didn't really know how to react to it.  Sometimes, even to this day, it escapes me that it's not just me that's affected by my illness.  That the people in my life all have some sort of stake in my survival.  Of course I knew that my family (for the most part) put my needs first to the best of their abilities and of course there was Anita.  To this day I don't know how she did it.  The nights sleeping on that hospital bed.  Giving up entire summers in the years she should be out dancing and drinking until the entire night is a blur.  Those are the nights she spent sitting in my hospital room, holding my hand, and watching Sportscenter.  Looking forward to sleeping on an unforgiving convertable chair/bed/torture rack, I still don't know how she held on.  The only thing I'm sure of is that I would not have had the strength in her place.  I've always been the weak one.

I'm also amazed by how much my friends have been looking out for me.  Of course, maybe they're all in it for the services of a permanent designated driver, but I guess I can give them the benefit of the doubt.  I have had friends drive me around, rearrange their schedules, I've had friends travel from Florida just to visit me. Encouraging text messages, helping me up stairs, understanding last minute cancellations, hospital visit after hospital visit, these people have truly proved their worth.  Don't the deserve a break?  Doesn't everyone deserve a break from all this?  Don't I fucking deserve a break from all this?  Doesn't my wife deserve to live her life like any one of her peers?

Now that I'm almost 3 years removed from the actual transplant, I can't believe how far I've come and at the same time, how distant the goal seems.  I sat today with my neighbor recalling all the times that I was rushed to the hospital because my blood counts were so low that I needed an immediate transfusion.  I mused at how difficult it was to find matching blood for me after 2 years because of all the antibodies.  I sat and thought about and recited that my current condition is bad, but what I was going through before was much worse.  Granted, I'm not going to the ER every 3 weeks, but how much better is my standard of life right now?  I keep trying to tell myself that I'd do it all again, but honestly, 2 weeks before my 3rd "rebirthday," I'm just not sure I would.
Of course, the physical issues that have been a result of the GVHD have been awful, but I think just the sheer amount of time that I've been in this almost state of limbo has taken an immense toll on me mentally.

I've been in therapy for over a year and it seems that as my body is recovering that my mind is just purging all the darkness it held inside.  All these absolute gems have surfaced from times that I've so long forgotten that I just didn't think I would be dealing with.  How am I supposed to cope with my shitty childhood and my recovery simultaneously?  Is that fair?  To have to deal with the evil I experienced in the years I couldn't protect myself and the illness I developed through no fault of my own?  How can I my mind hope to resolve when my body is taking so long?  I'm just not sure this is going to turn out like we all wanted.

Lately, I've been listening to a lot of sad songs and having a lot of questionable thoughts.  I'm plagued with thoughts of ways to stop the pictures from flashing through my mind.  One of the side effects of all the medication I'm on has been that I tend to have an averse reaction to alcohol.  If I go out with my friends, I am now normally the designated driver because I just can't drink anymore.  Over the last week or so, while I'm laying in bed all alone, the only thing I can think about besides absolutely awful memories are the thoughts of going to the kitchen and drinking myself into a stupor and falling asleep.  I think of taking more morphine that I'm supposed to in order to help clear my mind.  To just make it go away, ALL of it.  If only for the next hour.  Lucky for me, I hear my wife breathing as she sleeps and I couldn't do that to her.  I've seen what addiction did to my parents' marriage.  I've seen what it turned my father and my mother into.  No one survives addiction, so right now my better angels have been prevailing, but I'm not sure how long I will hear them.

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.

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.

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.

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.

I suck at updating

Well, I suck at updating this thing, but it's really not my fault.  If you notice, the last post was sometime at the end of September.. Well.. With October comes postseason baseball and that pretty much consumes my life right now.

For a some quick updates:

I'm back to work, but it feels different there.  Being reunited with my work-spouse Mike has been great.  We have a lot of douching to catch up on.. And we're trying.

I started back playing basketball with co-workers.  When I told the hematologist, she specifically forbade it, but I'm doing it anyway.  Playing basketball (as HORRENDOUS as I am), makes me feel healthy, even if for an hour and even if the aftermath is having to be helped into the house because of the pain.  I need to exercise and doing stuff I like is REALLY the only way I'm going to do it.

I have today off from work.  I have a bunch of vacation days that I have to use before the end of the year, so I'm taking random days off.  Today, I have a fun day of romping around NYC with my love, PK all day.  YAY!  These Peek a Poop days we have are really awesome.

Living at my mom's house has been great in the sense that I'm literally in the middle of everything.  Being around everyone that I’ve grown up with has been absolutely refreshing.  Of course, as everyone predicted, being away from Anita has proven to be difficult.  I think that being in PA, even if we didn’t see each other during the, we knew we could… But now, we actually have to PLAN to see each other and that puts a strain on things.  Plus, Anita has become little miss busy and has SO much on her plate right now, even our phone time has been severely cut.

That’s basically it.  On the illness front, my blood clot is being well managed.  I’ve actually been promoted from seeing the doctor every few days, to once a week, to now every two weeks.  With any luck, in a few months, the clot will be dissolved and I can go on to live a semi-normal life for the first time in my life.  Wow.  Just typing that is amazing.  A normal life.

 

 

Anyway.. until next time, folks..