Thursday, May 27, 2010

May 27, 2009

It's Wednesday, May 27, 2009.  I woke up early again this morning after hearing Jason moaning from the other room.  I laid in bed for a minute to listen and see if he was truly in distress, and after hearing his dad's voice, I got up to go check on things.  Jason was writhing around in the hospital bed, scrunching his face in pain.  But this didn't seem like the normal pain he had been experiencing in recent days and weeks.  This was agony.  He was in extreme pain.

I immediately got on the phone to the hospice nurse (mind you, just yesterday we had practically begged for 24 hour care and were told it wasn't critical enough yet) to get her take on what we should do.  She instructed me to retrieve the morphine from the refrigerator and administer a few drops.  It was the strangest thing, though... when I got back to Jason's bedside with the medication, he quite literally panicked when he saw me with it.  I'm not sure what he thought it was, but his dad and I had to stop and calm him down and explain that it was going to help him.  After a few minutes, he relaxed a bit and allowed me to drop the drug into his mouth.

An hour later, the pain was worse.  The morphine didn't help, so I called the nurse again.  Again I asked for her to rush over, that a professional needed to handle this.  Again she told me to give him two more drops of the morphine.  I complied, and after another hour, things were still getting worse.  This time, I called the "case supervisor" and all but threatened her life if someone wasn't at the house in a matter of minutes.  I don't often do this, but I threw my job in her face and explained that she was "fucking with the wrong investigator" and that she "better fix this situation fast" or she'd "find Vitas and its incompetance plastered on the 10:00 news". 

Another hour later, we had a team at the house, and Jason was placed on 24 hour care.  They also administered another pain medication which seemed to work.  Jason stopped moaning, and was able to relax and fall back asleep.  So, now we were staffed with a home health-care worker all day, which allowed us to relax a bit more and spend time talking to Jason rather than trying to fix the problem. 

After the morning drama, the afternoon was pretty quiet.  By now, Jason was sleeping most of the time.  It was getting harder to wake him, and when we were able to, he didn't stay lucid for very long.  He was also unable to talk or more very much.  It was almost as if he was becoming paralyzed as death took hold of his body.  A few more visitors stopped by that evening including our favorite nurse, Leah, from Baylor.  She brought Jason a Frosty from Wendys...which we actually used to help administer some medications, since he was now having trouble swallowing.  Jason loved Leah so much, and you could tell because he actually became more aware while she was there.  He did his "Oh hi!" thing to her several times, which made us all laugh.  Even like this, he was still so cute.

I walked Leah out to her car a little while later, and she told me she thought it would be over by the weekend.  She told me that he was very close, and that we needed to stay close by.  I'm so glad we had someone like Leah to hold our hands through all of this.  It made things so much easier to digest and handle knowing we were getting the best advice.  I hugged her goodbye and told her I would call her after it happened.

Our night-time hospice nurse arrived a little earlier and had settled in by the time Leah left.  Jason hadn't woken up for several hours, and by midnight, we all decided we should get some sleep.  Like the previous night, I sat next to him for a minute before trying to wake him.  This time, though...he didn't wake up.  I didn't push, instead, I kissed his lips, said "I love you so much", and turned to go to bed. 

Only Hours Left

Wednesday, May 26, 2010

A Funny Thing Happened On The Way To Therapy

I'm a firm believer that those who have "crossed over" can give us signs that they're still around us, seeing everything that goes on.  I've talked about a few of those instances in previous blogs.  Today - a funny thing happened on the way to therapy.

I was extremely late leaving work, and I was in a terrible rush.  Naturally, that meant that there was a lot of traffic which also leads to frustration and annoyance.  I began fiddling around with my phone, the radio, etc and wasn't really paying attention to what was in front of me.  I don't know how long it was there, but in one instant, I looked up and saw it.

Vitas was the name of the hospice organization we used to help take care of Jason.  It's a name that - even a year later - I'm not very happy seeing.  The truck that came to deliver the hospital bed & supplies had the name plastered in big font on the side of the truck...and I remember watching the truck drive away after they had picked up all the equipment after Jason died.  I haven't seen another Vitas truck since that day...until tonight.

I looked up after fidgeting with my phone and my jaw dropped.  There in front of me was a Vitas truck.  My first instinct was to cry.  But, instead, I began laughing.  I laughed because I knew it was a joke sent by Jason to make me laugh.  Of all the days to see that truck (one year to the day that it arrived on Jason's driveway to drop off the bed, etc)...I knew it was Jason's way of showing me that he's still here with me, that we're still in this together.

May 26, 2009

It's Tuesday, May 26, 2009.  I was woken up early by some movement in the bed.  I opened my eyes to see Jason trying to get out of bed.  I asked him what he was doing and he said he was trying to go to the bathroom.  I jumped out of bed and helped him up, walked him to the toilet, sat him down, and then waited at the door.  He hadn't been to the bathroom in days, and I didn't expect that he'd be doing anything now...but it's what he wanted.

I peeked through the crack in the door and saw him struggling to sit up.  After a few minutes, he looked like he was having trouble, so I went in to help him up.  There was nothing in the toilet, but he didn't notice and flushed anyway.  I got him back to bed, but felt something hit my arm.  It was blood.  My first thought was another nose bleed, but I looked and he was fine.  I turned and looked at the bathroom and there was a trail of blood back to the bed.  I panicked running my hands all over his body trying to find the source until I came to the IV line still in his left arm.  Blood was literally shooting from the entry point onto him, onto me, and onto the bed.  I threw him on his back and jerked his arm into the air which stopped the spurting.  I screamed for his parents to wake up and come in to help me.  We got a towel on it and applied pressure while I called the nurse.

We ended up having to call the paramedics who were there in minutes.  They were able to stop the bleeding and wrapped his arm to keep it from bursting again.  It seems that when I picked Jason up off the toilet, I must've grabbed his arm in an awkward way and ruptured the IV line.  It was a scary sight - especially having to call the paramedics.  It was at that point that I knew we needed more help from hospice.  I spent the next several hours screaming my way through different hospice workers before finally getting some movement.  They'd be delivering a hospital bed and other supplies later that afternoon.

After we got everything cleaned up, we got Jason out to the living room where he laid down on the couch.  His parents and I, in the meantime, had a little conference in the other room where we discussed the difficult topic of planning the end.  Jason wanted to be cremated, so we needed to line up the funeral home, find an urn, etc.  They were going to go that afternoon to set all that up.  I felt so bad for them...in this strange city they didn't know having to go to a funeral home they knew nothing about to deal with the final arrangements for their only son.  It was just an incredibly sad situation.

While they were gone, hospice arrived and set up the hospital bed.  We also got a wheelchair, and a few other supplies.  We also learned that we'd be getting more help - in the form of a home health aide...basically someone to help lift him up, clean him, etc.  That was a relief...after some very frustrating moments trying to get the hospice company to respond to our pleas.  We really wanted 24 hour care, but were told the situation was not critical enough for that.  As soon as the bed was set up, Jason wanted to get in it.  We helped him up, shuffled him over and sat him down.  He never got out of that bed again.

Later that evening, a group of Jason's friends came by to bring dinner (even though we were still overrun with food) and spend some quality time with him.  By now, though, Jason was in and out of it quite frequently.  So, instead, we spent the night hearing amazing and hilarious stories about him while he slept.  Every once in a while, he'd wake up, smile, and say "Oh hi!" to someone who addressed him.  It was so cute the way he said it, and made everyone's mood a little lighter.  That is until it was time for them to say goodbye.  There were lots of tears, hugs, and kisses.  Everyone knew this would be the last time they saw him alive.  Standing by watching these first set of goodbyes was incredibly gut-wrenching and only made me dread the final moment when I had to do the same.

I wanted to stay up with Jason in the living room where the hospital bed was, but his dad insisted that I get some sleep.  He wanted to spend time with Jason, and I wasn't about to deny him that.  So, I went over to the bed, sat down next to Jason and held his hand.  Watching him sleep, so peacefully...it actually made me smile.  I knew his pain would be over soon, and for that I was thankful.  I squeezed his hand and said his name.  He opened his eyes, and I looked directly into them.  I leaned in and kissed him...he kissed back...and I told him I loved him.  He said "I love you too baby" before closing his eyes again.  It was the last time I ever heard him say that.

Two Days Left

Tuesday, May 25, 2010

May 25, 2009

It's Monday, May 25, 2009.  It's Memorial Day, and it's the day when things really started to take a turn.  As I stated yesterday, I normally spend time with my family on Sundays, but this week was different.  Because of the holiday, I had made plans to attend a family bar-b-q at my parents house, and was very much looking forward to getting some time in the pool.  I needed to relax.

Jason woke up in pain that morning... a fair amount of pain.  He always told me he was never afraid of dying.  The only thing he feared was the pain.  He did not want to die in pain.  So, naturally, when I saw that he was having such a hard time, I wanted to do whatever I could to fix it.  He was also continuing to have frequent nose-bleeds, and I knew he desperately needed an infusion of platelets.

Once again, I called our nurse/friend at the hospital and begged to bring him in for some quick treatment.  She finally agreed, and the plan was set in motion.  We helped Jason out to the car and then piled in and headed to the hospital.  Jason was so weak by that point, he was really starting to have trouble walking.  While enroute to the hospital, I called ahead and asked them to meet us downstairs with a wheelchair.  Susan & Kirsten - two of our absolute favorites - met us at the valet entrance.  They helped Jason out and whisked him upstairs to get started while the rest of us parked.

Back on the 5th floor, Jason chose to lay down and selected a room with a bed instead of the regular "chaired" rooms.  They hooked him up to fluids, and got the platelets ready to go.  But shortly after we arrived, Jason began feeling some intense pain.  The doctor was called and ordered IV pain meds, so we knew we were going to be there for a while.  At first, I decided I wouldn't go to my parents house, but after his parents - and even he - insisted I go, I decided I could use a couple hours away.  I waited until the pain meds kicked in...when I could visibly see that Jason was beginning to relax before I kissed him, squeezed his hand, and then left.

I made it to the car before I let the tears flow.  I cried the entire drive to my parents while also catching up on phone calls and updating those who needed to be updated.  At my parents, I was able to relax a little and spend some quality time in the pool.  I stayed there for a few hours, and after eating, I packed it up and headed back to the house.  Jason and the crew had just arrived shortly before I did, and I could tell the mix of fluids, platelets, and pain meds had helped.  Jason was almost like himself again, but after a couple more hours, that quickly faded.

By nighttime, he was having a considerable amount of trouble getting up, standing, and even walking.  We had to walk with him, someone in front and someone in back to make sure he didn't fall.  Jason's humor was still in tact, though.  At one point as we were shuffling along the floor to the kitchen, he looked up into my eyes and smiled and said "Look babe, we're dancing."  We laughed about that together.  We had started talking to hospice about beginning more regular care (at this point, they were only checking in one time a day) because we felt that things were getting way beyond our capabilities.  However, they didn't feel like it had reached that point and told us to hang in there.  Whatever.

We got Jason to the bedroom and decided to put him on my side of the bed which was closest to the bathroom.  He really hadn't gone to the bathroom since Saturday, but we thought in case he had to, this way we wouldn't have to walk him all the way across the room.  So, we switched sides.  I got him settled and then climbed into bed.  He was having a lucid moment and we were able to talk a little.  I asked him again if he was scared, and he said no.  Again, just of the pain.  He apologized for putting me through all of this, a statement that made me nudge him angrily.  He told me how much he loved me, and I echoed while telling him how much he's changed my life.  It was an amazing moment, something I realized later a lot of people in our situation don't get.  G-d was giving us our chance to say everything we needed to say...and we did.  It turns out this would be the last night we'd be in bed together...forever.

Three Days Left

Monday, May 24, 2010

May 24, 2009

It's Sunday, May 24, 2009.  Normally on Sundays, I'd be leaving Jason's mid afternoon to go spend time with my family, but on this Sunday, I'm staying put.  Jason's best friend Jerrod is coming by later with his mother.  And, there's a new issue we're dealing with.  Nose-bleeds.

When Jason's platelet level gets low, he starts getting nose-bleeds.  Shortly after we woke up and moved into the living room they started to come.  We'd get it to stop bleeding for a few minutes, and then out of nowhere it would start again.  I put a call into our favorite nurse at the hospital - someone we'd become very close to - and asked if we needed could come in and get him an infusion of platelets.  She told me that it really wouldn't do much good and to just keep him home and take care of him as best we could.  She was also a little surprised that hospice wasn't there to help us.

I put a call into the hospice representative and discovered that no one really knew what was going on with Jason's case.  It was the first of many screw-ups during our journey through hospice.  Either way, we were there at home, which is what Jason wanted, and we were doing the best we could.  Jerrod and his mother arrived after lunch, and Jason tried his best to stay a part of the conversation.  But more often than before, he was beginning to space out.  He would join the conversation, and then midway through a sentence, he'd stop and glass over.  It was as if he had fallen asleep with his eyes open.

We got through the visit with Jerrod & his mother, and Jason was visibly tired.  He went to lay down in bed, and his mom went in to be with him.  Shortly after Jerrod left, a few friends of mine from work showed up and surprised the hell out of me.  They pulled up with a car full of food.  Literally - there was enough food in there to feed an army.  We were all completely blown away by my co-workers generosity.  It was an incredible sight...one that brought me to tears.

The rest of the day was spent dealing with a few more nose-bleeds, but after the visit by the "Food Fairies" it was as if we were all re-energized to keep on fighting.  There was a new air of hope in the house, but unfortunately, it didn't last long.

Four Days Left

Sunday, May 23, 2010

May 23, 2009

It's Saturday, May 23, 2009.  All of us were still reeling from the news from the previous day.  Luckily, Jason didn't need to go to the hospital that day, so we were able to spend the day together.  My parents and I were scheduled to go to the symphony that night, and we had made plans to get everyone together for dinner beforehand...though it would all depend on how Jason was feeling.  He woke up in a fair amount of pain which really didn't go away during the day despite our efforts to mask it.

He was still mobile, still up walking around, talking normally.  Except for the fact that you could see the giant mass of tumor which had now deformed his right shoulder, you would never know that this beautiful man was days away from death.  Even the hospice worker remarked at how "healthy" he looked for someone who needed hospice.

As the day progressed, Jason's pain level progressed as well.  We decided dinner with my folks wouldn't be a good idea, so I instructed my parents to come pick me up after dinner for the symphony.  We were going to see the Dallas Symphony Orchestra performing the 1812 Overture.  It's one of my favorite pieces of music, my dad's too... and Jason all but insisted that I continue with my plans to go.  Even in the face of dying, he wanted to make sure that I wasn't drowning myself in what was going on.  He was always thinking of others instead of himself.

I kissed him intently before leaving the house with my folks.  Once at the symphony, I texted him until the concert began, and then again during intermission.  The 1812 was the final piece that night and it was amazing.  It's such a beautiful piece of music and this was the first time I've seen it performed live in person.  It was a truly memorable experience, and I'm so glad I was able to see it.  That piece became so much more to me through this ordeal, but more on that in future blogs.

I arrived back at the house shortly after 11pm, and was surprised to see everyone still awake...waiting for me to come back.  It seems in the few hours that I had been gone, things had already started to change.  I didn't want to believe it.  I noticed his mom holding his cup for him and asked what was going on.  She informed me that he was no longer able to hold onto things...he apparently had dropped a number of cups throughout the night.  I didn't believe it.  A few minutes later, I went to refill his drink, and handed it to him like normal.  Within a minute, the glass was on the floor and water was everywhere.  I just looked at him...as he continued to stare forward at the TV not realizing what had just happened.  I knew then that this was really happening.

After I changed into my pajama's, I had to help Jason stand up so that we could get to bed.  I walked him into the kitchen where we performed our special dance - I got his pills together, put his fentanyl patches on him, and then helped him into our bed.  He fell asleep quite quickly that night, and thankfully so.  He didn't hear me crying next to him...having finally come to the understanding that our days together were numbered.

Five Days Left

Saturday, May 22, 2010

May 22, 2009

It's Friday, May 22, 2009.  With Jason's parents now in town, I decided to go to work on Friday and spend the day catching up on all the work I had left behind the last week while taking care of Jason.  He and his dad, in the meantime, spent the day at the hospital getting the necessary fluids - blood, platelets, etc - that he needed.  Little did I know they were also running some other tests on him...results I'd find out later.

I spent the day at work trying to focus on my job.  However, when the love of your life is dying literally before your eyes, it's hard to focus on anything but that.  The boys at work did their best to make me laugh, but there was an air hanging in the room that day, and everyone knew it.  I made it through the work-day and sprinted out of there as soon as I could.

I arrived home before Jason & his dad did.  I found his mom there alone, and we had a nice chat just the two of us.  The boys got home around 6pm, literally seconds before the 1st hospice nurse arrived to check in.  I met Jason at the door, and he gave me a look... a look that said "I don't have good news."  My heart sank, but I hid it as best I could from everyone else.  We sat and chatted with the hospice nurse for a while.  She ran her tests on Jason, wrote the results down, and then was out the door.  Jason's parents had stepped out to the backyard during this, so we took a few minutes to ourselves after the nurse left.  That's when he dropped the bomb.

His kidneys had begun to shut down, and they told him it would now be a matter of days...not weeks.  Can you even begin to imagine when the man you love is sitting in front you telling you he's going to be dead in days?  It's something I wish I never heard...but it's something I'll never forget.  I told him we needed to tell his parents (his Dad had been told to leave the room when Jason initially got the news).  He agreed, begrudgingly.  We invited his parents back in, sat them down, and Jason told them the news.  It was like an out of body experience...sitting there watching him tell his parents that their only son was going to be gone soon.

We invited a couple of his friends out to dinner that night and filled them in on the situation as well.  Things were going to start happening fast, and we needed everyone to be on the same page.  But fast doesn't even begin to describe how quickly things started to go downhill the next few days.

Six Days Left.