It all started last Saturday the 9th while I was attending Jason’s visitation.  I will start off by saying that the visitation went as well as it could have.  It was very difficult for me but I absolutely had to be there.  I had a good long conversation with Sandy, Kurt, and Kyle, both at the visitation and the dinner afterward.  I met a lot more people from Jason’s family and after Saturday, I could see just how many people loved him.  I’ll never forget him.

So what happened to me?  Well, at the dinner after the visitation I started noticing this lower back pain that I get prior to my abdominal pain, which I have described in many of my previous journals.   For those who haven’t yet read about it, I have been getting severe abdominal pain at the onset of lower back pain on and off over the past few months.  It started probably back in May, and after a stomach biopsy (endoscopy), the doctors determined that the pain was being caused by a condition known as graft versus host disease.  They had found some mild graft versus host disease (GVHD) in my stomach at that time.  So they prescribed me on Prednisone (a commonly used steroid) to treat the GVHD.  So the pain somewhat subsided from the prednisone and I started only having these abdominal pain episodes once every week or two.  Well, I started to notice it happening again at the dinner and thought about running home to get some of my pain medication.  Luckily, there was a relative of Jason’s at the dinner who had some Advil which I thought would hold me over until I could get home.   Well, the Advil didn’t do much, but I am grateful nonetheless.

After I got home from the dinner, I quickly took some pain medication.  Now, normally this takes care of the problem.  However, this time the pain did not go away.  The pain lasted all through the night and I did not sleep one minute.  All day Sunday, the pain continued, never letting up.   I took more and more pain medication….all having no effect.  Sunday night, I laid down trying to ignore the pain and fall asleep.  There was no way that was going to happen.  By this time the pain was so bad, I was crying.  At about 12:30am I called the hospital (the BMT unit specifically).  After finally getting an oncologist on the phone, I was instructed to go to the Emergency Room instead of the BMT unit to get treated for whatever condition I had.  So I woke my roommate up at about 1:00am and we went over to the Froedtert ER.  The receptionist told my roommate that it would be awhile before I was even going to be seen so he might as well just go home.  I called my mom and she started heading down to Milwaukee from Two Rivers.

My first experience with Froedtert’s emergency room service, is definitely going to be my last one.  It took them at least an hour just to get me into a room with a bed.  They laid me on the bed and threw a sheet over me to keep me warm.  I was shaking, but not from being cold, it was from being in pure pain.  My eyes were welling up and I was groaning and moaning as I laid there.  Another hour or so went by…still haven’t gotten an ounce of pain medication.  By this time, I am near screaming for “help.”  My mother arrives all the way from Two Rivers…still no help from anyone.  At this point, I’m not really sure how much time has passed but a physician assistant finally has come into see me and has given me 0.3mg of morphine…barely enough to treat a mild headache.   I couldn’t believe it.  Here I was, a BMT patient, absolutely writhing in pain, and they were doing absolutely nothing for me.  As the hours passed, they gave me a little more pain medication, but still nowhere near enough to treat the amount of pain I was in.  In the morning, somewhere around 9 or 10:00am…I was transferred to the 4NT cancer unit, which is nearby the BMT unit which I’ve spent so many months of my life.  On my way up there, I passed up a nurse who I recognized.  Her name was Jessica and she was my nurse from way back in 2003 when I was getting treatment at St. Luke’s Hospital.  I had always thought she was the best nurse that I ever had.  It was hard to believe that I was looking her in the face again 5 years later at a completely different hospital.   Anyways…

So, I get to my room and pretty much immediately they start trying to figure out what is wrong with me.  Dr. Pasquini comes in to see me and takes a real good look at me.  He thinks that maybe a trauma surgeon team should come in to take a look at me to get a second opinion.  As the day rolls on, the pain in my stomach subsides.  However, I start to notice a much sharper pain on my right side of my abdomen…a new pain.   One of the trauma surgeons comes in and takes a look at me and feels around.  Every time he poked at my right side, I noticed a sharp pain.  This was a totally different pain.  He orders a CT scan to be done on my abdomen.  So they give me two big cups full of this Tang type juice which has a dye in it that shows up in the scans to drink.  After a few hours, I get the fluid down and they take me downstairs to take some pictures of my organs.   After getting back to my room and waiting a short while for the results, the doctors come in and inform me that my gall bladder looks pretty bad and is surrounded by excess fluid.   They then tell me that they are probably going to have to remove my gall bladder but want to do an ultrasound to get a better feel for what they are looking at.  So they do the ultrasound, which confirms their suspicions.  The gall bladder is clearly infected and needs to come out.

Typically, the gall bladder is operated on within 72 hours of noticing any type of symptoms.  At this point, we realize that the pain that I have been having since May, may have been my gall bladder all along!  With months of damage and infection being done to my gall bladder, they are probably going to have to open up my abdomen with one large incision rather than doing it laparoscopically with just a few small incisions.  The worse the condition that the organ is in, the more likely they will have to open me up…and it wasn’t looking good.  However, that night, the primary surgeon came in my room and informed me that he thought he was going to be able to do it laparoscopically.  That was a bit of a relief.

So let’s see, it’s now Monday night and they are scheduling my surgery for the next day, Tuesday, sometime in the afternoon.   Tuesday rolls around and my mom comes back down to the hospital after spending the night in Two Rivers.  We wait around most of the morning just watching TV.  At about 1:00pm they come to take me away for the operation.  They bring me downstairs to the operating room and have me sign a couple of forms and give me some fentanyl and Versed to loosen me up.  That’s about all that stuff (fentanyl and Versed) does to me anymore.  I’ve had so much of it, that it just calms me down.  To the normal person, it would probably knock them out cold.  Then they give me some other drug and I am out cold.  The surgery lasts two hours or so.

Now, I must have been dreaming about a computer game I used to play called Diablo 2.  Just to quickly describe the game, it’s a computer game where there are good guys killing bad guys with swords and bows and arrows and stuff….an old pasttime.   Anyways, they must have woken me up with some sort of chemical because I instantly woke up from this dream.  It wasn’t a slow and groggy kind of wake-up.  This was one of those wake-ups where when you wake-up, you’re still dreaming!  Well, in my dream, I was shooting arrows with a bow at these monsters, and I’ll be damned if I wasn’t doing the exact same thing when they woke my ass up.   When I woke up, I was shooting arrows blankly into the air at imaginary monsters that were running around and there were other allies in the room helping me.  I was yelling out, “DIABLO 2!”  One of the surgeons made a comment that went something like, “Is this some sort of demonic incantation or something?”  And then one of the anesthesiologists explained to him that Diablo 2 was just a computer game.  After about two minutes, I realized that I was completely naked acting like a complete jackass in front of about 15 medical professionals.

After they took me back to my room, I had some time to recover.  As the day went on, some of the doctors came into check on me to see how everything went and how I was feeling.  The anesthesiologist came in just to talk to me about what happened after I woke up.  He was still laughing hysterically when I saw him.  The primary surgeon came in that night.  I asked him if they had taken any pictures.  He said “no” but that the gall bladder absolutely had to be removed.  He described it as being “necrotic.”  He said it was black and dark green in areas and that some of the organ was dead tissue.   It was badly infected and could have easily killed me.  So how the hell did this go undetected for so long?  Well, remember the GVHD I was diagnosed with and given prednisone for?  The prednisone masked all of the symptoms that I should have been having from my gall bladder.  The only reason I was starting to notice the gall bladder symtoms was because they were starting to taper down my prednisone dosage.   It’s scary thinking about it.   It doesn’t mean that I didn’t have GVHD…I did.  It was just that I ALSO had an infected gall bladder.  GVHD doesn’t typically cause pain…especially pain of this magnitude.  So something else had to be wrong…something which I kept on insisting every single week I went in to see the doctor. The main thing is that the problem has been resolved and I can now begin recovering to get back on my feet again.

I’d like to wrap things up by thanking my doctors that cared for me during my latest stay at Froedtert, primarily Dr. Pasquini.  That guy is truly amazing.