VOIgle???

I really want to know if there are any plans for a Google based “home” phone that runs on voip that runs in conjunction with Google Voice.  I want this to happen before Anita and I move in together SO BAD!  I’ve wanted to utilized my Google Voice number for like A YEAR, now!  Someone make this happen!  SNAP!

 

I wouldn’t mind paying a monthly fee, either.  Just like Vonage; I just want it to be able to run with Google Voice so I can use all the cool features that I get with my own Google Voice number.

 

Man, I’m a loser.  }o-)

 

 

But a healthier one.  }o-)

Quick note about the weekend

So, as my condition has been improving, Anita and I are renewing our search to find a venue for our wedding.  I’m so happy to be reclaiming my life slowly.  Anita and I went through a whole slew of wedding stuff (and made a TON of appointments to view venues) yesterday afternoon.  That evening, we spent a little time at my friends’ house and today, my friend Steve stopped by for a couple of hours.  That was preceded by a Friday spent at my friend’s Mike’s house for a quick lunch.

Being social and feeling comfortable in social situations feels good again.  And while I will admit to taking two of those 5 hour energy things this weekend (which are definitely labeled incorrectly in terms of flavor… The flavors “berry” and “lemon-lime” should be named “ass” and “butt” flavor), I didn’t really feel sick at all.  I’m able to avoid the pain killers all day and usually only have to take them once at night. 

I’m starting to feel like me again and that feels good.  I’m hoping to get back to work in a couple of weeks and hoping to get back to SOME semblance of “normal”.

 

All good things.

But I Promise You This – I Will Always Look Out For You – That’s what I’ll Do

So, remember my life being a complete crapfest except for the people around me?  My health, finances, and basically life all going down the shitter?  Well, I got a little bit of a jolt in the right direction on my birthday courtesy of my hematologist and the new meds I’ve been taking.

First, let me tell you, the days leading up to my birthday were absolutely marked by failure.  The walls were falling down around me.  Even the day before my birthday, out of the blue, my (sort of) new camera that I bought less than a year ago…  Just stops working.  I mean…  That’s how deep it went.  How the Hell does a camera just randomly stop working the day before someone’s birthday?  I can’t lie, when it happened, I just broke down.  I really did.  I went to the basement and I balled for about 20 minutes.  I just couldn’t believe how badly things were going. 

Even the next day.  My birthday, the only day my doctor could squeeze me in to see him.  And it’s not like a trip to your local doctor; in and out in 45 minutes.  This is a whole trip to Philadelphia and promised to eat up at least 3 hours.  Of course.  So how did it end up?  Well, we left for the hospital around 2:30.  We drove down to my sister’s house and picked her up.  She drove into Philedelphia to the Hospital at UPENN.  Seemed normal enough.  We got there around 4:45.  I signed in, she scheduled me for the lab work.  After about 15 minutes, I was called in to have my blood drawn.  Still no problem, right?  I get called into the doctor’s office at about 5:15.  Still not bad.  We sit in the room and wait for him.  WE DID NOT SEE THE DOCTOR UNTIL 8:00-ish.  I’m not kidding.  Dr. Stadtmauer spends a lot of time with his patients and doesn’t rush anyone and he really is a very attentive and personal doctor.  Of course, the price you pay is that his appointments run late and you have to wait.  On top of that, we were squeezed in and overbooked in the first place.  Lots of fun.  I was so sad.  Our original plan was to have Craig meet us in Philadelphia with my niece and nephew and we were all supposed to have dinner together.  That was all blown up.  We were waiting so long that my mom (a diabetic) had to be given food and juice to keep her blood sugar in check!  I mean, it was unbelievable how long we had to wait.  This broke (by a long shot) ANY previous wait that we’d had there.

So anyway, he comes in around 8:00 with a big smile on his face.  I was the subject of a minor medical miracle and the first sign of hope I’d had since this whole mess started back up in July.  A few weeks earlier when I’d seen Dr. Stadtmauer, my platelet count was an astronomical 1.2M.  It was the main reason why the blood thinner wasn’t working and I ended up with the bloodclot/blood in my lung.  Well, just a few short weeks later on a new medication called Myleran, it had been reduced by almost 400K.  I had also had a blood transfusion of red blood cells the week prior and my hemoglobin count was holding strong at 9.6, the highest it has been in 3 months.  So basically, for the first time since July, ALL of my blood counts moved in the right direction.  I’d definitely say it was worth crying like a little girl the night before because everything was going wrong.  For the first time in as long as I can remember, I feel a glimmer of hope that everything will be all right. 

Dr. Stadtmauer’s prediction is that I will be able to come off the Myleran in about 8 weeks with a normal platelet count and I could be off the new (awful) blood thinner in as little as six months.  Yep.  I could be up and running and “normal” in 6 months.  Wow.  Typing it out and reading it makes it seem even more fantastic.  Let’s hope everything goes as predicted.

Here goes nothing!

When You Love Someone but it goes to waste – Could it be Worse?

I watched Rachel Getting Married today with my mom.  I’ve already seen the movie months ago with Anita and it’s an amazing movie, but that’s not the point of this.  All the drama in the movie aside, it made me feel so awful.  I mean, isn’t that what I’m supposed to be doing?  I’ve been engaged for like 6 months and we are nowhere with planning our wedding because apparently, I’d rather spend time in the ER than planning the rest of my life with the woman I love.  How can this be?  When did it get to this?

I feel so lost.  After this last stint in the hospital and having to spend day after day drugged up on pain killers just to breathe like a normal person; spending my nights injecting myself with other drugs just to keep me alive, I just don’t feel like myself anymore.  I don’t have the desire to do anything.  Nothing.  My friend Mike was nice enough to come over on Monday with his daughter so that we could exchange our Christmas gifts and even that felt forced.  He gave me an AMAZING signed (and authenticated) Dan Marino picture.  It’s absolutely incredible.  And when I saw it, I knew the reaction I was supposed to have, so well, I don’t want to say I faked it because I didn’t.  I genuinely love that picture and it makes me miss my house because I have no place to put it up right now, but I wasn’t as excited as I should’ve been.  I’ve become a zombie.

But I digress.  This wedding thing.  I know that the standard man’s line to wedding planning is “just tell me the date an I’ll be there” but come on!  I’m so much more sappy than that and I’ve been looking forward to all this wedding planning since I decided I wanted to get married!  This past Sunday, I missed going to a bridal show with Anita because I just don’t have the constitution to stay upright for that long.  So what did I do instead?  My mom and sister thought I could do with a change of scenery so we went down to Mou’s house to spend time with her family, specifically the kids.  What did I do?  I fell asleep on her couch.  With the kids running around me, screaming, and everyone having a good time.  I don’t even know why I fell asleep.  I hadn’t taken any pain killers at that point.  I just had a blood transfusion, so it wasn’t fatigue.  I just don’t think I enjoy being awake anymore.  I don’t recognize the person in the mirror, anymore.  I’m supposed to be the fun one.  What happened to all the fun?  Where did it go?  When did it turn into just waiting for the next disaster to strike?

Anita called me after going to the bridal show with her mother and expressed how much fun she had and I just felt awful.  I’m missing out on the best part of my life.  And for what?  For what I ask?

This entire experience is so disheartening.  It’s no wonder I feel so alone; I’m not even me anymore.

Just because I’m hurting, doesn’t mean I’m hurt; doesn’t mean I didn’t get what I deserved

Ha.  Remember what I described last time as a clusterfuck?  Well, I was wrong.  That wasn’t a clusterfuck.  Not by a longshot.  In fact, compared to what happened just a short week after that hospital visit, my visit to Robert Wood Johnson was a walk in the park.  A stroll on a sunny day. 

 

So what went down?  A few days after being released from RWJ, I noticed a pain on my right side.  It thought it was a muscle cramp from having to spend a night sleeping on my back (something I never do) in that UNBELIEVABLY uncomfortable hospital bed.  I shrugged it off as nothing.

A few days after coming home, I received my month’s supply of Thalomid that my doctor wanted to take to try and spur my bone marrow into normalizing production of everything.  Have you ever heard of Thalomid aka Thalidomide??  Do you remember the flipper babies from the 60s?  Yeah, it’s THAT awful.  In fact, when Dr. Stadtmauer proposed me taking the meds, I had to sign a release saying that if I was going to bump uglies, I would have to use at least TWO different forms of protection to make sure that there are no pregnancies.  The list of OTHER possible side effects wasn’t so fun, either.  Neuropathy (where you can’t feel your hands and your feet) and the possibility of forming blood clots (with my platelet count over a million, this was a huge concern for me).  Who knows how my body was going to react to this stuff.

Because this stuff is so scary, everyone (read: Chumki Mashi and Mou) came to the decision that I would stay at my sister’s house Thursday night when I was scheduled to take my first dose so that if anything went wrong, I wouldn’t be alone (like the RWJ incident).  I agreed.  The plan was simple.  I would go down to Mou’s house Thursday night, take the meds, and assuming everything was alright, I would come back Friday to be with Anita for the weekend.

I was DETERMINED to be as normal as possible that weekend.  I wanted to go with Anita to the city to see the tree and go ice skating and eat in chinatown and JUST BE NORMAL for once, just for a short period of time.  I hadn’t felt normal in such a long time, I craved it.  Of course, that was far from in the cards.

Here’s what went down.

Thursday night, before I even took anything, that pain in my side became almost unbearable.  I didn’t say anything to my sister.  I lied.  She saw that something was wrong, but I didn’t want what I perceived to be a muscle cramp to derail my plans for the weekend.  I CAN’T BE THIS FRAIL!  I just can’t.  I tried to lay down flat on her couch and the pain was absolutely excruciating.  I still held onto the belief that this was just an amazing muscle cramp that didn’t want to let go.

Thursday night rolls by.  I take take the pills.  My sister, being the absolute uncontestable champion of all this to this point, actually slept downstairs in her living room with me so that I wouldn’t be alone that night.  The medicine made me feel terrible.  The neuropathy was real.  The tingling, numb sensation I felt in my hands and feet after about an hour made me feel absolutely disgusting.  In my head, I couldn’t believe that this was going to be my nightly routine for the foreseeable future.  Talk about FML. It was at this time that I tried to lie down and discovered how bad that ‘muscle cramp’ really was.  Instead of lying flat with my head on the armrest, I sat upright on the couch and reclined.  It wasn’t the most comfortable position, but it was doable.  I slept.  I was uncomfortable, felt disgusted by the neuropathy, but I was good enough to go to sleep.  No major damage that night.

Friday morning, I wake up and everyone’s already gone.  The uncomfortable feeling in my side was now really uncomfortable.  To the point where it kind of made me nauseous and made me want to keep my movements to a minimum.  This fact that moving around aggravated the problem solidified in my mind that it was the muscle cramp from Hell.  I was dreading the drive home, but I was absolutely determined to do it.

When my sister got home from work around 4:00-ish, I think she sorta guessed something was up because I hadn’t eaten anything and I guess I just looked uncomfortable.  She made me prove to her that Anita was coming over that night and that if she wasn’t coming, I wasn’t allowed to go back.  After confirming that Anita was indeed coming over to be with me, I was allowed to leave.  I was really dreading having to drive home.  Having to sit there driving for what should’ve been an hour and fifteen minute drive, I didn’t want to do it; I kept delaying.  Finally, at around 6:30, I realized I really had to get on the road if I wanted to execute my plan.  I wanted to surprise Anita by cooking her a late dinner for when she arrived (she was supposed to be home at around 10:30-ish)

I leave my sister’s house.  Kind of begrudgingly.  The pain while sitting in the driver’s seat is immense and almost intolerable.  I just hoped that I could fly up the Turnpike and get out of that position.  Of course, disaster!  As soon as I get on the Turnpike, there’s traffic.  And when I say traffic, I mean RIDICULOUS the kind you NEVER see traffic on the Turnpike.  It was PARKWAY traffic.  I couldn’t believe it.  I had hoped to get around 80 MPH on the way home, I was lucky to be doing 25 at times.  All the while, the pain was mounting.  It jerked tears out of my eyes and I winced involuntarily from time to time.  It was awful.

After two hours and only making it about 1/2 the distance, my plan was obviously shattered.  There would be no way I could make it back in time to prepare absolutely anything.  I figured I’d look at the glass half full, right?  I pulled into the Woodrow Wilson rest stop on the Turnpike and set my sights on a DELICIOUS Gold Rush Chicken Sandwich from Roy Rogers.  Definitely making the best of a bad situation. 

The place was PACKED.  I guess I was not the only one seeking refuge from the traffic.  Not wanting to deal with the having to fight for a parking spot, I just parked far away.  It’s not like I couldn’t use the exercise, right?  I get out of the car and I can barely walk.  Each step I take, it feels like a fire is burning up my right side.  Starting right at the small of my back, wrapping around to the front of my rib cage, and extending all the way to the top of my shoulder.  I take a very slow pace.  After what feels like an eternity of pain, I get my sandwich and retreat to the car.  I figure the best move would be to eat and drive.  While walking back to the car, I thought I might pass out.  Every single step I took felt like I was being punched by Mike Tyson.  It gets to the point where I almost vomited when I got back to the car.  I didn’t actually throw up, but I spent about 2 minutes dry heaving because of all the pain.  But I trekked on.  I got back in the my truck and got back on the Turnpike.  Still packed.  I must’ve lost at least 3 years of my life because of the pain I went through while driving for those 3 hours.  And yes, it was THREE HOURS of driving.

I get home and had only one thing on my mind.  Hot, massaging shower.  The combined heat and pressure really put me and ease and gave me some relief from the pain.  I sat on the recliner and waited for Anita.  What I feared now was worse than just not going to  spend a day in the city.  What I feared now was that I would have to return to the hospital.  I wanted to avoid this at all costs.  I mean, ENOUGH with the hospitals already, OK?  I get it.  I’m sick.  Do I really need to go to the ER every weekend and be hospitalized EVERY week just to prove it?  Can’t I be sick in peace?

No.  Anita arrived and after about 4 hours of jostling and trying to alleviate the pain, after I tried to lay down next to Anita finally to sleep and felt so much pain I almost threw up again, I knew.  I knew I would have to go back to the ER.  At this point, I had already ruined my ride to the hospital in Anita.  The poor girl herself wasn’t feeling well when she came over and after my second shower (and my brash decision to not go at that point), I told Anita that it would be fine for her to take some Nyquil to try and help her with her congestion and her cold.

It was about 1:00am and I was in so much pain, and poor Anita felt helpless as she battled the fatigue brought on by the Nyquil.  Lucky for me, there are people everywhere looking out for my well being.  I called Chumki Mashi and she came right over.  There was actually another small convention at the house of our family friends to assess my situation and to figure out who exactly would be making it to the hospital.  The hospital party would include Chumki Mashi, Saikat, Anita, and of course, the patient.

My doctors here in Edison had already kind of thrown in the white towel and both suggested that we go to the ER at UPENN instead of at JFK as the situation would be better handled by Dr. Stadtmauer.  That’s exactly what we did.  So, for those of you keeping score, I drove UP from my sister’s house (20 minutes outside of Philadelphia) only to make it back to Somerset and drive BACK DOWN to Philadelphia a few hours later.  All in the name of trying to have a normal weekend.  Normal.  I think I have to come to terms with the fact that THIS, everything that I’m going through right now, the uncertainty, the pain, the discomfort, THIS is going to be my definition of normal for a while.  *sigh*

When we were closer to UPENN, my sister was informed of what was going on and again, like the champion she is, met us in the ER.  We were admitted in minutes and when we got into our room, I was pumped full of dilaudid which granted me some real relief from the pain.  But that’s of course, where the next chapter begins.

 

What’s the aftermath?  I was hospitalized for about another week.  Why?  Blood clots and blood had filled up the lower portion of my right lung.  Yep, even though I was on the blood thinner, it STILL clotted and STILL almost killed me.  I keep thinking back to what might’ve happened had I decided to “tough it out” and just spend the night on the couch or something.  What if I had been stubborn enough in my desire to avoid hospitals to not give in to the pain?  Scary, but then again, these brushes with death are becoming a little too commonplace in my life.

My mother and my cousin changed the dates on their return tickets from India and returned within that week that I was in the hospital.  It was decided that I would no longer be on an oral blood thinner, but instead, I would inject myself (daily) with a medicine called Fragmin to act as an anti-coagulant.  Dr. Stadtmauer now put me on a combination of dilaudid and oxycotin so that I could try and breathe as pain free as possible.

Lucky for me, I was released on Christmas Eve.  All I wanted was SOMETHING normal and I was SO excited to be able to have Anita’s family, my sister’s family, and my family together at my mom’s house for Christmas.  And it almost didn’t happen.  When I got home, I wanted to go food shopping, but just plum forgot how early stores close on Christmas Eve.  By the time I felt rested enough after returning from the hospital, the stores around me had ALL CLOSED.  It was absolutely horrifying.  I drove around with my mother trying to find and open store with no luck.  The only store that was remotely open was Walmart, but even that was closing in 1/2 an hour.

Of course, like the unsung hero that she is, Anita jumped to the rescue.  She, in PA, jumped in her car with her brother and mother and rushed to the Walmart in East Stroudsburg (the one complete with grocery section) and ABSOLUTELY saved Christmas.  They bought turkey and ham and really really saved the day.  I can’t stress that enough.

Christmas Day, I was loopy all day from the drugs, I was in pain most of the day because the meds don’t actually make ALL the pain, but just dull it enough so I can barely function.  But even with that, it was one of the best days I can remember in the last 6 months.  Everyone put a lot of effort into doing their part for that day and it was incredible.  I finally was able to get a glimpse of that elusive sense of normalcy.

And that’s my life, now.  In search of normalcy.  I’ve been reduced to sitting on this recliner, sleeping all day and all night, trying to find a sense of anything.  I go from pill to pill, injection to injection, just trying to hold on.

My condition has vastly improved over the last week.  I’ve been taking about 1/2 the dose of pain killers I was taking last week and actually spent the last 2 nights sleeping in a bed.  I want to get excited about an improved state, but I’ve been down this road too many times to feel optimistic.  I don’t think I can even define the word optimistic at this point.

I hope this week will be healthy enough for me to enjoy it a little…  If there was ever a week that I would like to have with little to no issues, this would definitely be it.

Here goes nothing.

Just because I’m losing, doesn’t mean I’m lost; doesn’t mean I’ll stop

I can’t even begin to describe the amazing clusterfuck that is my life right now.  Honestly.  Until last night, I really had very little knowledge of what exactly myelofibrosis is.  What it does to the body; what it does to one’s life.  You know what?  Right now I feel like I’ve lost.  Right now, after reading what other’s have gone through and what what others are going through, I feel… Hopeless.
It’s not like I’m trying to be this way.  And it’s certainly not for the effort of the people around me.  It’s kind of my mind just taking over.  I mean, I’m not a betting man, but if I was, would I bet on me?  Of course not.  My life has been absolutely riddled with bad luck; there’s certainly no reason for that to stop now, right?  But as I said, it’s not for the efforts of the people around me.  Especially my sister’s and my mom’s friends.  My sister has been basically attached to my hip through all of this and that’s somewhat of a surprise and something that I very much needed (though I would never admit that to her face).  When I was carted off (by ambulance) to the emergency room, three different sets of my mother’s friends were there for me which is incredible.  Sebika Mashi actually came over and called 911; Saikatda met me in the ER, and Chumki mashi drove me home (and gave me the yelling that was coming to me).  With my mother visiting her family in India and while  miss her presence immensely, these people have filled in brilliantly while I settle for long distance phone conversations with my mom (for now.. She’s finding her way back to NJ probably as we speak).  Friends of mine that don’t let me brood too much and give me pep talks.  Co-workers visiting me and spending time…  Even Anita, with her finals these past 2 weeks has dealt with this as much as she possibly can.  I would be remiss if I didn’t mention the fact that my friend/co-worker Mike let me steal borrow  his copy of Madden 10 to have at home.  Sure, it sounds silly, but having a distraction (that lasts HOURS AND HOURS) really helps my mind from imploding.  Better to think about screen plays rather than my next blood screening.  I really commend everyone involved for their efforts because I know for certain that I don’t think I’d have the strength to do the same in return.
But even with all this, I feel alone.  I feel helpless.  Madden, visits, and phone calls are all fine and dandy, but nothing is making me better.  In fact, at this point, nothing can make me better. 
This all came to a head on Sunday night.  In search of normalcy, I went to my friend Tom’s house.  Him, Steve, and I were to watch NFL Red Zone (as us men do) and enjoy the day watching football and Scott Hanson not pee while directing traffic on the channel.  It started out just fine.  I got to Tom’s (early, believe it or not!) and we sat around and bullshitted.  We ordered buffalo chicken pizza and prepared the chips and dip (read: opened the bag and container).  It was perfect.  It was everything I needed it to be.  The three of us enjoyed the 1:00 games like any other Sunday of any other year.
Oh, but this wasn’t any other Sunday and this is not another year.  Almost just as the 4:00 games started, I felt a little fatigued.  Being quite the veteran at gauging my own levels of energy, I figured I should leave before I become plain useless (Mind you me, before this night, useless basically meant “so lazy that I did not feel the urge to get up, talk, or basically do anything").  Now, we were pretty much doing this anyway, but I figured I wouldn’t want to drive home that tired so I took my leave.  Slapped Tom on his hand and made my way out the door.
Still felt pretty normal.  Then about half way home, I started to feel REALLY tired.  This is not completely abnormal to me.  I thought nothing of it to the point that I called Anita to whine about it.  Nothing new here, I call her to whine about absolutely nothing all the time.  In fact, calling just to bother/annoy her is really one of my favorite things to do.
By the time I make it back home, I’ve felt fatigue like I’ve never felt before.  I felt like I couldn’t left my leg enough to step forward.  I walked in the house and could barely walk.  I stumbled over to the couch and literally collapsed.  I actually tried to get up and I literally couldn’t.  I can’t describe how that feels.  For your brain to WANT your body to do something, but your body not being being able to carry it out.  It’s an absolutely frightening paralysis.
Cut to the chase:  Ambulance takes me to Robert Wood Johnson and we discover that my hemoglobin has dropped below a threshold at which I am at least functional.  Can you imagine that?  I didn’t have enough blood in my system to move.  Think about that statement for a second.  Realize that it’s not any kind of figurative language.  I could not move.  Send shivers down my spine just to type it.
My sister, my brother in law, Saikatda, and the Basus all spent time with me at the hospital.  My sister came all the way from South Jersey and stayed until I was admitted (at around 12:30).  The second she left the room, I started at the dry erase before me informing me of what room I was staying in, what my nurse’s name was, and what my nurse tech’s name was and wept.  This was everything I was trying to avoid.  This was everything I was trying to deny.  With everyone around me warning me to be cautious and to act within my situation while I was running around pretending to be “normal”, I actually stopped believing I was sick.  Hello Paulash, it’s reality.  I know we haven’t seen each other in some time, but I thought I’d surprise you.
A transfusion and an endless wait for an evaluation by a team of doctors later and Chumki Mashi took me home(I didn’t get to leave until about 5:00pm… Just because I was waiting for doctors to see me).  She wanted me to stay at her house, stay at my sister’s house, stay anywhere but at alone.  But that’s all I wanted.  I wanted to be alone.  To sit and realize my new reality.  A seemingly endless battle with illness and fatigue punctuated by a few respites of normalcy.  It’s my life or rather, what’s left of it.  Guess there’s nothing left to do but “make the best of it”.
I wouldn’t wish this on my worst enemy.

What is going on?

So, after certain events this weekend, it's dawning on me just how serious this condition is.  I've gone now as far as finding a support group to help me cope.  The problem is...  Reading these people's experiences with myelofibrosis scares me.  Their lives seem so difficult.  Is this what I'm in store for?  Is this what I have to look forward to?

So much of my life is up in the air right now.  I don't know how to place it all.  I can't figure anything out.  I'm lucky to have as many supportive people around me as I do.  My sister has been unbelievably incredible, even for a sister.

Still, I can't shake the feeling that this is not going to end well for me.  Maybe returning to writing my experiences will help with exorcising some of these demons.  Probably not.  It's worth a shot, right?  I guess my New Year's resolution will be to try and write 1 post a week.  Or at least average 4 posts a month.  Yeah.  That sounds a bit more liberal. 

Let's hope this works.

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..

Newsflash

I’ve decided that if I need to, I’m gonna be blogging in between The Lost Summer posts.  So much is going on in my life RIGHT NOW, I don’t want to skip it simply because I want to write about the past.  Make sense?  Good.

Mr. Spleen, Mr. Spleen AKA The Lost Summer (Part 2b)

Not all Doctors are created equal, in fact some doctors should have never been created…

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So, where were we?  Ahh yes.. Pocono Medical Center.  So, I’ve been getting platelets all night to stabilize my condition; I remain in the ICU in case something catastrophic happens.  Poor Anita is stuck having to be with me.  Strangely, what I am worried about most is losing my job.  I had missed so many days this year due to this illness, I feared any more sick days and my boss would have it.  Him and I already had a little bit of a “sit down” due to the amount of sick time I was taking from the company and while he understood I was dealing with something completely off the wall, he also made clear his need to have someone he can rely on to put their butt in the seat when he needed them.  What made the situation worse in my head was that I was actually on call that weekend.  The last thing I needed was to be sick that weekend in case something huge had happened.

 

And all the while I was worrying about this… I was actually ill, too… Or so they told me.  The orange juice flowed, eventually my mom came up from NJ, and the barrage of specialists came in; all wanting a piece of the mystery disease that was so far above their capabilities, they must’ve been dizzy in their research.  I don’t remember any of their names, but I don’t remember liking most of them save for two.  The worst part?  The doctor in charge of my condition was a hematologist that wanted no part of my situation from the second he saw my chart.   I don’t remember what he looks like, really.  White man, lab coat, indifferent look on his face.  While having my first conversation with this man, I already know that his main goal is not to find anything out, but to get my platelet count above 50K so he can ship me off.  Now, while the prospect of being stabilized is wonderful, I (and everyone else) was more concerned with the fact that no one knew what was going on inside me and the fact that every time they’d infuse me with platelets, every time they drew blood and checked it thereafter, the count would drop.  When I bring this up to the hematologist, his response was an indifferent phrase to the likes of “don’t worry, we’ll getcha outta here.”  At first I was afraid that I was going to be stuck there forever, now I feared that I’d be given the proverbial band aid and left to fend for myself. 

That first day in the ICU was difficult to deal with.  I was so afraid and so confused and so worried about so many things that I just felt awful.  My mom came in and has no idea as to what is happening which naturally throws her into panic mode.  Anita is her usual calm self, nut her concern is as visible on her face as her smile.  Even more wonderful is dutiful James who basically sacrificed his Saturday night to spend it with me there in the ICU.  Sitting there in my little half room, watching TV with me until he fell asleep.  Having those people around feels reassuring.

What is not reassuring is the massive confusion between the doctors.  They are sending in infectious disease specialists, the douche hematologist, endocrinologists, and various other unidentifiable doctors that all come in, ask the same questions that I am forced to answer again and again; they all poke and prod and press and do whatever other uncomfortable procedure they deem necessary.  Of course, after all the prodding and answers I give them, they all walk out of the room just as baffled as they entered.  Of course, I would expect nothing less from doctors that have had absolutely no experience with my illness that has had no diagnosis for 20+ years.

After what seems like an unending line of idiots, my knight in shining armor (white lab coat??) appeared.  He is the attending physician and while he understands that this may be above his head, his interest is not in setting me free, but in getting to the bottom of whatever was causing the issue.  I remember him very distinctly because he was the only one in that place that made any sense to me.  He was the only one who spoke with any sense of urgency.  I believe his name is Dr. Kemed.  Aside from his doctor clothes, he really didn’t look like a doctor.  Short, pasty-white, intentionally shaved head, even an earring in his ear.  He kind of looks like Chris Daughtry if he had decided to become a doctor instead of a rock star (did I just admit to listening to Daughtry?); just shorter and with less eyeliner.

Instead of trying to discharge me and was the hospital’s hands of this problem child, he insisted that I remain in the hospital for my own safety and that he would try to have me transferred to UPENN ASAP to see Dr. Stadtmauer (the hematologist that had been studying my issues for 3 years).  Great, right?  My prayers have been answered!  Wrong.  UPENN does not accept hematology transfers on the weekend save for acute leukemia patients.  Dr. Kemed and one of his associates said they would see if they can pull some strings and make some phone calls and get me transferred and have this if not taken care of, at least looked at.  All I had to do was sit tight (as if I had another choice).

While these two fine doctors try to call in favors or promise favors or whatever doctors do when they push their problems onto their friends, the douchatologist comes in revealing what we already knew.  With every transfusion, the platelet count increased, but with every hour that passed, the number would diminish.  Great deduction, jack ass.  Tell us something we don’t know.  Please.  Anything.  Have it be the weather, the color of your eyes, your birthday.  Anything to justify the bill your office is going to send my insurance company for this bedside visit here.  Anyway..  Another bag of orange juice was in order and he went on his merry way.  Wonderful.

After a few hours (which was passed wonderfully with more visitors.  Anita’s family was wonderful enough to come in and visit… And bring KFC.  My God, do I love KFC), I learn the results of the doctors’ attempts to parcel me off to UPENN.  Nothing.  There would be no way for UPENN to break with policy and free up a bed for someone not having complications from Leukemia.  Isn’t that just selfish?  I mean, come on people!  I WAS BLEEDING FROM MY GUMS!  Haha.  I’m just kidding.  Totally understandable.  They need to keep beds open in the hematology ward for people that really deserve them.  I would have to wait until Monday to be transferred.  It is Sunday at this point, so one more day without some sort of medical disaster and at least I would be someplace with people that were familiar with my condition.

Monday comes.  More orange juice, terrible hospital food (seriously…  Thank God for Anita’s parents bringing me KFC.  I can’t say that I wouldn’t have survived without it… But I also can’t say that I would have survived without it… You decide), and one final blow to the jugular.  The douchatalogist walks in with a smugness about him as if he had just accomplished some great feat.  Guess what?  The hospital is sending me home.  Yep.  They had brought my platelet count above 50,000 and they could now legally release me.  Doesn’t that sound great?  After an entire weekend of doctors telling me how dangerous my situation is and that any number of normal every day activities can lead to my death, now I get to go home and partake in those normal every day activities!  Hooray!

Needless to say (but I will), I am completely horrified by this news.  What kind of practice is this?  Scare the pants off the patient into believing anything beyond the hospital walls can kill him and then…  Release him beyond those hospital walls?!?  I am horrified while everyone else involved on my side is furious.  We don’t even get a say in the matter.  One of the doctors tries one last plea to UPENN to no avail.  With a platelet count above 50,000, no one even thinks my insurance would pay to have me transferred to UPENN because.. Well.. They legally don’t have to.  Ain’t our health system grand?  Of course, in hind sight nothing happened and everything worked out fine, but at the time, it was just absolutely infuriating. 

So, I am released.  A weekend sojourn to the Pocono Medical Center was concluded only to be followed by what I fear to be endless out patient testing at UPENN.  I toy with the idea of writing an email to Dr. Stadtmauer at UPENN asking (read:begging) him to admit me so that I (and whoever else.. or rather EVERYONE else involved) would not have to travel between either The Poconos and Philadelphia and/or my mother’s house in Somerset, NJ and Philadelphia.  Also, if I was going to be an outpatient, I would have to return to work and that would just have been a scheduling nightmare.  And for what it’s worth, I just wanted this whole thing to be over.  Spending another who-knows-how-many days driving back and forth to UPENN to get whatever tests they wanted me to take would drive me crazy.  I just wanted to stay there, let them poke and prod me for however many days they deemed fit and have this be done with once and for all.  Through the grace of my job and my boss, I would be eligible for short term disability for up to six months (granted I didn’t think I’d need anywhere near that long) and not have to worry about my salary or losing my job.  It just seemed to make sense.  Let’s just hope Dr. Stadtmauer sees it the same way.

I write the email first thing when I get home.  If nothing else, with all the thoughts of danger swirling around my head, it feels good to be home.  It feels good to sleep in my own bed.  It feels good to be surrounded by my stuff and not tubes, dinging monitors, nurse call bells, and strangers in white lab coats.  Much to my amazement, the next day Dr. Stadtmauer replies to my email.  I wrote him a long plea trying to tug at his heart strings in explaining my situation and my frustration with my condition seemingly deteriorating.  The email must’ve translated to two and a half pages of whiny drivel.  Maybe even more.  I’m actually surprised he read it.  I wonder if he made it all the way through.  Thankfully, his reply was short and much more succinct.

He simply wrote that he remembered me and to bring my bag to my appointment as he was going to have me admitted to the hospital and we were going to get to the bottom of this starting that following Wednesday (7/15/09) at 12:00pm.  Success.

 

To be continued…