Friends to the end.

So, I had a little bit of a scare over the last two days.  My great friend sent me a text that said "This might be the Vicadin talking, but I kinda want to have a pillow fight with you"  At first, I really dismissed it.  The next day, I read something else involving Vicadin again and I started to worry.  I immediately started thinking that his move to PA was just too much for him and his looking for solace in all the wrong places.  I was prepared to tell him, "Friend...  Find the direction of the nearest border and RUN!  RUN for your life as PA is clearly swallowing you whole (and for men our size, that's certainly not an easy task).  Lucky, it turned out to be nothing nearly as serious and when I finally spoke to him, I scolded him for not telling me he was on it and his punishment would be that he'd have to spend a weekend with the boys starting this Friday.  So in the end, it worked out for everyone.

It worried me that I thought he was doing something so stupid and he didn't alert me.  Everyone knows I make sure he's aware of every stupid adventure I attempt... I mean, someone's gonna have to back me up, right?

I always considered myself (for what it's worth) a considerate friend if not a good friend.  I'm always trying to get everyone together and actively try to keep our group together even after 12 years have passed since it formed.  I try involve everyone, make sure we are all aware of what everyone's up to (the public stuff)  These are things I think about.  Things that drive my day.  Making sure that the family I created for myself remains as constant as possible for the rest of my life.

You see, when my parents came to the United States, they didn't come with a lot of family.  In fact, they didn't come with ANY family.  A cousin of mine and his mother and father were a part of our lives for a little bit, but that's really it.  The only connection I've had to blood relatives I've had were our bi-yearly trips to India in my youth and arguably the 2nd best year of my life, 2004 when I spent the entire year in India, living amongst my family.  With the lack of family surrounding me, I tend to see my friends as my chosen family, and in most instances where emotions are concerned, I really do consider them my family.

So, losing someone that I would consider that good a friend and lowering them from that status is not a decision I come to lightly.  Especially with the women in my life.  Since becoming an adult and really establishing those I care about, I would say my friendship attrition rate has been absolutely admirable.  Losing friends is just not something I do.  In fact, I feel as though the troubles we've all been in has done nothing short of brought us closer.  And don't get it twisted, keeping REAL good friends at THIS age is difficult.  Life just gets in the way too often.  You are relegated to text messages and scheduled outings as opposed to the 6:00pm call you would get when you were 21 that went something like, "Dude, I am so hungover from last night, we definitely need to get drunk so I can get rid of this headache... You're driving."  And, BOOM!  When you're 31, that phone call has to come about 3 weeks in advance MINIMUM if you want more people involved and festivities end 3-4 hours shorter than you're used to.  And throwing up at the end of the night is NOT a good thing. 

But I digress.  So, it's a fight to keep good friends and I pride myself on my record.  And since my friend are so close and I'm not really accustomed to losing them, when I actually DO lose one, I feel absolutely devastated.  Unfortunately, despite much effort on my part, the last two years I've had to detach my heart strings from two of my favorite friends.  Friends that I've had for quite some time (double digits each) and both whom I sincerely loved like they were my own family.  One of them....  One of them draws tears from my eyes as I speak.  She was the Abbott to my Costello.  The Wetteland to my Mariano.  I haven't had a meaningful conversation with this person in probably over a year and I can't think of a day that goes by that I don't think of her.  Both of them really.  The other one basically shaped who I would be as an adult when she met me.  She introduced me to music.  My god.  I just realized that.  For how many times some silly song felt like it saved my life, it was at least a little thanks to her.  They've taught me so much about life, showed me so much of myself, and helped make me so comfortable in my own skin, I HATE that we just simply grew apart.  It would be so much easier to accept if there were some massive, existential fight and that was it.  But that simply just was not the case.  And for the love of Jeebus, I tried.  I swear to you, I tried hard, and I tried for a long time.  Ask my wife.  I tried so hard over the years to keep our friendship at an acceptable level, but unfortunately, it certainly takes two to tango.  There are only a certain number of times that even my massive ego can take an unreturned phone call, an ignored text, or even the lowly dismissed FB post.  At some point, I have to cut my losses and drop the dead weight and I hate it.

You know what, I thought that if I wrote about it, it would make me feel better, but it doesn't.  It feels awful.  I draw so much strength from the people I love that it's felt like a part of me has been missing.  But I trudge on.  I cherish the friendships I have been able to maintain and keep going forward.  It's all I can do.  It's all any of us can do.  I really had much more to say about this, but my heart hurts and I must stop.

Thank you for everything you are to me, even if you aren't there for me to be it.

I'm the Only Bandyopadhyay of my Lineage Left in this Country

So,  I know it's been a while since I've written anything, but let me explain....  It's been a weird couple of months.

My father died last month.  Yeah.  Exactly.  It was such a strange thing to hear.  It was the middle of the day, I was just sitting at home and reading (read: watching TV), and my sister calls me.  This is not abnormal.  Since the time that my sister and I got closer we talk a few times a week about nothing.  I really thought nothing of it.  When I answered the phone, there was no chit chat.  She just dropped it on me.  As soon as the words came through the earpiece, "Dad died yesterday, " I could feel my pupils enlarge.  I stared around for a moment in silence.  I didn't (and still don't) fully know how to react to the news.  The man has been absent from my life for the past 25 years.  The last time I spoke to him in 2004, he was busy saying terrible things about my family to which I responded that if he continued, I would take no part in the rest of his life and would not perform my duties as his only son upon his death.  That conversation is the first thing that came to me after my pause, but more on that later.

I was so conflicted.  The man was basically a stranger to me.  I know the evils he had done.  I have some vague happy childhood memories of spending time with him.  I remember his voice.  I remember the specific way he pronounced my name.  I remember that he used to call McDonald's McDougal's for no real reason.  But those memories are so distant.  What I really remember?  What I remember about the man that is my father is the pain he caused my family.  The pain he caused my mother.  I have such vivid memories of my mother and father SCREAMING at the top of their lungs when I was young.  I would be so afraid (I was <5) that I would hide in my father's closet until my sister saved me when it was over.  I remember how much he revered having a son and how much he basically ignored having a daughter.  I remember that he desperately wanted us to call him "Bapi" or "Baba" but I'm careful not to even refer to him as "Dad." I remember that my sister, my mother, and I would walk into my room (which was now his permanent dwelling) and more than once was screamed out of there.  I could only get a gimpse of his state.  I was too young to understand why there were milk jugs of (what I thought was) lemonade surrounding his bed.  Why was he always naked?  And why did the room ALWAYS smell so bad.  For a four year old, this is all too much to process.  Only NOW reflecting back am i able to decipher this scene brought forth from my memory.  I remember that when he used to visit me, I would always get a trinket or toy.  Even at that age, I felt like I was being bought and knew better.  Strangely, I remember his enormous white Chevy Caprice with the Cookie Monster sticker on the back bumper. 

That is really all I have.  Sure, I have a few positive memories here and there.  I remember right after The Karate Kid came out, him and I would hold karate tournaments in our living room.  Ha.  Maybe that explains my obsession with that movie series.  Or maybe it's just one of the greatest movie franchises in the history of movies.  Either way.  I remember our MacDougal trips in which I basically had free reign over what  I ate and how much tim time I spent using the amenities they had available.  I even vaguely remember him helping me with some math homework (boy would he be disappointed in the awful mathematician I've become).  For the most part, these tattered memories are all I have of my father.  An ocean of negativity dotted with small buoys of kindness and an inkling that on the inside, he may as well have been a good person.  If only THAT person one the conversation in his head every day.

Unfortunately it didn't and by the time I was 6, he was basically gone from my life.

I'm going to skip ahead in my life as to skip the more important questions that arose because of my father.

I made a lot of mistakes when I was trying to grow up.  A lot.  Probably more than my share.  Every time something would go wrong, someone would always murmur between their breath, "he's just like his father".  Sometimes if my behavior was bad enough, someone made sure I head the comparison to my father.  I don't know what they were trying to accomplish.  Maybe trying to get me to stand up and 'prove them wrong', but that's not what happened.  Every comparison to my father sunk me further.  That combined with OTHER external forces acting against me that at the age of about 18 when a family member climbed over a second story balcony to break into the house and instead of unlocking the front door to let my mom in, he spent the next approximately 4 minutes kicking down my locked door, finding me sound asleep (I had been quite ill that week and took some Nyquil to help alleviate some symptoms and was SOUND asleep), analyzed the situation and decided that the best course of action was to kick me so hard in my sleep that I wake up in a panic and immediate urinate on myself because I didn't know what was happening.  The funny thing is,  when my wits returned to me but before I recognized my assailant, my first thought was "What did I do?" instead of "Are we being robbed?" or "Has an insane person broken into our house"  I'd become so accustomed to this sort of treatment, I assumed it was my fault.  Anyway, I digress..  After the night that I got the shit kicked out of me for basically being sick, half asleep, and accidentally locking the door leading to the garage with the lesson of the night becoming "Paulash needs to be more aware of his actions", I guess I decided that the murmurs and backtalk must be true.  I always worried that I would not amount to anything because of the unique combination of biological AND environmental barricades and at this point, after that night, I confirmed it in my own head.

This was the legacy of my father.  Or at least, it could have been.  I spent years trying to reconciling this with people trying to tell me how smart I am and blah blah blah, but nope.  I was destined to leave this world in a blaze of unglory.  Couple that with my mysterious illness and I figured I woudn't make it beyond 35.  I told people this.  I lived my life like this.  Indulging in pointless 'now' pleasures, not preparing for tomorrow.  At age 31, I am approaching my old doom's day line authored by my father and the genes he past on to me that guaranteed my failure.

Of course, that's not my life now.  In fact if you ask my wife, she'd probably tell you that how far I plan into the future and how much I concern myself with  our happiness in terms of years creeps her out a little (we are only recently married and I already negotiated the names of our potential children).  What made for the dramatic turn around?

A friend of mine saved me and she probably doesn't even know it.  I'm not sure I ever thanked her for it.  While on a downward spiral, wallowing in my own self pity and wondering why I was subjecting myself to all these testing if I'm destined to just be a fuck up..  Why?  She answered me very calmly that what I become is essentially my choice.  But I'm too much of my father.  She then inspired me, internally.  She likened the traits of my parents into basic baking ingredients and said that adding as much of each part of my father and mother to create me in the way I want to be.  Sure I understand that was oversimplification and that it does nothing to explain heredity and whatnot, but for the first time in my memory, someone told me that I could actually take aspects of my father and STILL BE WHO I WANTED TO BE.  This was the first time I had ever heard that.  It was absolutely liberating.

From then on, I was on a mission to better myself but then was derailed once again when I fell majorly ill about 5 years ago.  I'm just NOW climbing out of that hole.  As difficult as it has been, I'm optimistic.  I have all the tools in my possession to bring my life to where I think it should be.  I gave up some time to illness and some more to idiocy, but I plan on regrouping now.

I declare that in ten years, I will be where I want to be in every aspect of life.  Sure I'm farther ahead in some aspects and not others, but in 10 years, I will have taken our family name to heights that I want to see it.  Our family name in this country will garner respect, love, and compassion.  People will count on us because we are worthy of their commitment.  Ten years.  That's not a lot of time so I better get started.  You should stick around, though.  It's going to be one hell of a show.

Shit just got real

Today was the first Father's Day since I was 5 years old that I could l celebrate with someone that can legitimately call me son.  Not only that, he's one of the best dads I've ever met.  My father in law has COMPLETELY devoted his life to his children.  And what did I do?  I stayed home.  I was too sick to go anywhere this weekend but made sure that Anita went.  I felt so terrible.  I feel so isolated by all this.  I was so ashamed, I didn't even call him to wish him a happy father's day.  Way to get off on the right foot, Paulash.  Ugh.

This disease is taking my soul.  Slowly and painfully.

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!