3 Years, 1095 Days, 26280 Hours, 1,576,800 Minutes

Today’s blog entry is going to be long and somewhat emotional.  Also I am going to ask my readers to imagine themselves in the same situation that I am going to describe.  Perhaps some of you have been there, perhaps not.  But try and imagine the feelings and emotions that you might experience as I relay the events of three years ago - July 14, 2008.

I am writing this and posting this today as I really want to acknowledge all that was taken from us 3 years ago today.  I need to put this trauma down on paper in its entirety once and for all.  I am not doing this for sympathy or recognition of any form – I am doing it to write it and put it out there to maybe free myself from the trauma and memories that bounce through my head continuously during the middle of July.  If you have any questions of the honesty by which I hope to tell this story go and re-read the entry I posted back in October of 2010 that tells part of this story that I am not proud of.  You can find it here: http://adadandhisboy.blogspot.com/2010/10/candle-at-mother-cabrini-shine.html

I have told this story to my therapist but I need for it to be heard and the emotions imagined.  I hope this will be my final telling of this story.  Then I will let go.  I will let go of it all.  I want to try to move forward and close this chapter.  Like a book you have read it will always be there, but I don’t want my mind to open these pages again.

Each relationship that we enter into is different and has its own unique characteristics.  This is especially true of long term relationships and marriages.  Patty and I had a marriage in which we were constantly connected.  Though I traveled a lot for work, we knew what each other was doing almost every second of the day.  We would typically talk 4 - 6 times a day if I were out of town.  When we weren’t working or doing something that required us to be apart, we were most likely together.  We did so much together, from going to the grocery store, to watching TV, to making dinner, to going to the gym, and on and on.  There were a few exceptions to the rule where we had interests that the other just wasn’t going to do.  For example, Patty wasn’t going to climb a 14er with me, nor was I going to go to scrapbooking event with her.  If we were going out with friends we normally did it together.  Rarely did we have a “boy’s night out” or a “girls night out”.  We thought and lived almost as one person.  We did have our ups and downs and at one point in 2003 we almost separated because my life on the road had done some horrible things to our relationship.  But still even then we hung together and fixed “us” and became even stronger as a couple.

All was good until the illnesses (colds, strep, infections, etc) began for Patty in the fall of 2005.  Then in the spring of 2006 the really bad stuff started when her platelet count fell to almost zero and she was diagnosed (inaccurately) with a condition call ITP.  Finally disaster struck on August 4, 2006 when Patty was officially diagnosed with acute lymphoblastic leukemia with the Philadelphia chromosome translocation.  With the Philadelphia chromosome translocation, it made the leukemia incurable by the standard means of chemotherapy.

Despite all of this the closeness in our relationship remained.  We weren’t able to do everything together any more as from the spring of 2006 Patty’s activity level was severely curtailed because her lack of platelets substantially increased the risk of severe bleeding from the tiniest of bumps. 

Even through her 4 rounds of chemo and her bone marrow transplant, we were pretty much always together.  I would arrange my day so that I could be at the hospital with her, leaving only when it was time to get Zack from school.  We felt so optimistic that life was back on a good course when Patty was discharged from the hospital after only 34 days post bone marrow transplant.  It seemed like our beautiful life together was going to continue with this road bump of leukemia behind us.

Of course that is not the way it turned out.  On May 7, 2007 Patty was admitted back to the hospital to treat an onset of severe Graft-versus-Host (GvH) disease.  GvH is when the transplanted bone marrow begins to reject the rest of the “Host’s” body.  Since the bone marrow controls the make up of our immune systems, GvH can attack any organ in the body.  Unfortunately for us, the immune response began attacking Patty’s entire digestive system and skin.  Fourteen months later in July of 2008 the doctor’s had tried just about every treatment known to cure Patty’s GvH.  Some worked for a while but in the end run none were really successful except for the use of massive doses of steroids.  At times Patty would be on 250 mg of prednisone for days and weeks on end to keep the GvH in check.  The side effects of these drugs were intense and Patty lost all her strength, became susceptible to very bad infections, had her kidneys completely fail, lost most of her eyesight and slowly slipped into a state of mental collapse and emotional despair.  In general those 14 months between May of 2007 and July of 2008 were month after month of hell.  I only had a ring side seat to all this trauma but Patty never left the ring – standing in day-after-day fighting to survive and doing a tremendous job despite all the set backs and severe consequences of the battle.

At one point during those 14 months things were so bad with Patty’s mental facilities that I had to explore getting a conservatorship put in place so that I could make decisions for her.  She became lost in a mental fog of anxiety, depression and drug induced dementia.  Yet through it all there were glimpses of Patty and her sweet loving personality that came through.  Despite that I was living my own life in so many ways and Patty’s mental decline, I still depended upon her so much.  She, along with Zack were the reasons that I lived.  I got up every morning with the determination and hope that I could do something that would make it so she could eventually come home.

Then we came to July 3, 2008 – the day I took Patty outside for the last time.  It felt good to do that and share our time together in that courtyard.  (See a previous blog post from last week.)  Yet even at that time the infection that would finally take Patty away from us was growing and gathering strength inside her.  Two days before, the home health aide who I had come to the hospital every day to hang out with Patty after I went home and I noticed that Patty had a very large skin break down on her leg.  (The steroids she took caused extensive damage to her skin and after a while caused it to break down.)  The wound care nurses took a look at the breakdown and were somewhat surprised at how large it was.  They did what they could to treat it and put antibiotics on it and everything seemed like it would be OK.

On the morning of July 4^th I called the hospital before I came in for the day.  The nurses told me that things were not so great as Patty was having a very hard time tolerating her dialysis that day as her blood pressure was very low.  That concerned me greatly as if her BP were too low then there were many different complications that could start to take place.  I decided I needed to get into the hospital pretty fast and I was very glad I did.  By the time I reached PSL/St. Luke's the intensivist on call was already in Patty’s room.  One look from him and I knew there was something major going on.  His call was that Patty was in full blown sepsis and unless she was put on a ventilator we were going to lose her within the hour.  Since Patty was conscious she was able to make the decision and I did not have to step in and say a word.  The doctor thought it was a lost cause and tried to convince Patty not to go on the ventilator and just end it there.  To say that I wanted to punch the doctor in the face at that very moment is a bit of an understatement.  Patty was extremely upset and kept repeating to him and every one who would listen that she wanted to live.  At one point as her bed was being wheeled to the Intensive Care Bone Marrow Unit (Bone Marrow North).  Patty screamed – as loud as she could scream at the time “I WANT TO LIVE”.  At that point the doctor finally shut up and did what was necessary to get things ready to put Patty on the ventilator.

They put Patty in the room that I hated the most, room 3403 (what I called the death room).  This room was the room closest to the nurse’s station and only the sickest patients were put in it.  Typically the people who went in there did not come out alive.  Patty had already spent 5 different spells in that room over her 14 months of hospitalization and had come out alive each time.  Before they began the process of putting Patty on the ventilator I got to spend about 5 minutes with her just talking and trying to calm her down.  I told her that she was going to be OK.  I told her that she would come out of this crisis no worse for the wear and that regardless of anything I would be there and I would watch over her.  Then the doctors and nurses took over.  They let me stay in the room while they intubated her.  I had seen this procedure done numerous times before but this time it drove me crazy as Patty’s BP was already running very low.  When a person is put on a ventilator for whatever reason it typically causes their blood pressure to crash.  Patty didn’t have much room to maneuver before her BP reached critically low levels.

I did manage to stay in the room throughout the procedure, but my stomach nearly came up as I watched her BP bottom out at some very low levels.  They got her on “pressor” drugs that brought her BP up and stabilized it within 20 minutes.  At that point I felt I could finally breathe again.

Then the long wait began as the infectious disease doctors took over and tried to fight the infection that was ravaging Patty’s body.  Because she was on a ventilator they put her in an induced coma using profopol – the same drug that killed Michael Jackson. 

Through the weekend and the following Tuesday Patty was stable and it looked like the infection was coming under control.  Each day a respiratory therapist would work with Patty and try and wean her off the ventilator and for the first days things were definitely on track. 

Around 3:30AM on Wednesday July 9^th I was awaken from my sleep at home by a phone call from the bone marrow charge nurse that Patty had taken a turn for the worse.  For whatever reason she had spiked a very high fever of over 105 degrees and her blood pressure had gone down so that they needed to add another “pressor” drug to keep her BP up.  I quickly made my way to the hospital as what was going to happen was very unclear.  When I arrived the intensivist on call informed me that she thought Patty had potentially had a major bleed in her brain – which would have explained the fever and drop in BP.  The only way that they could determine for certain was to do an MRI of Patty’s brain.  Because of all the equipment involved in Patty’s care, doing an MRI was not going to be easy.  Arrangements started immediately for the MRI but it would be almost 10AM before it could be pulled off.  How the nurses and MRI technicians accomplished it I really still don’t know but they managed to get her downstairs and into the MRI without losing her.

The MRI did not show any brain bleed and throughout the day Patty’s condition stabilized somewhat.  No one could explain what had occurred.  This little incident scared the hell out of me and it made me realize how precarious Patty’s situation was.

The following 3 days were like a game of cat and mouse as Patty’s BP and oxygen saturation would go down and then the nurses would adjust the medications and ventilator to get the numbers back into an acceptable range.  Sitting in Patty’s room hour after hour watching the numbers on the monitor seesaw between OK and bad was pure torture.  Whenever the numbers got too low, the alarms would start to beep and my heart would skip a beat.  This kept up through Wednesday, Thursday and Friday.  I felt continually emotionally spent but the adrenaline flow into my body kept me going pretty much all the time.

Saturday came and I spent pretty much the entire day at the hospital, only returning home in the late evening.  I hadn’t eaten anything so Zack and I went out to dinner and then we came home to get some rest.  (Zack never went into the hospital with me when Patty was on the ventilator.  I did not want him seeing her like that.)  I called the nurses station at 11:30PM before I went to bed and they told me everything was going OK.  Patty was back on her continuous renal therapy and her BP and oxygen saturation where holding their own.  Feeling that things were OK I lay down on the couch to watch some TV.  I think I must have fallen immediately asleep once I lay down on the couch because the next thing I knew it was 2:15AM and the phone was ringing.  Of course it was hospital and things weren’t going well. 

Driving to the hospital that night I ran a lot of red lights and I did my best not to puke my guts out in the car.  My stomach kept wanting to come up and my heart felt like it was beating out of my chest.

The news and the view when I got to the hospital were very grim.  Patty lay there looking horrible.  She was by this point after 10 days on profopol totally unresponsive.  The nurses were scrambling to do stuff to get her BP and oxygen saturation up.  There wasn’t anything I could do so I took my normal chair in the corner and sat and watched.  I would go back and forth from that chair to a chair I kept beside Patty’s bed.  Ever hour or so I would come and sit by the bed and talk to Patty and stroke her hands and hair.  But by this point I knew that things weren’t going to be ok.  By 10AM in the morning I had to start leaving the room every so often as I just could no longer handle the strain of watching the monitors and seeing the numbers head downward.  I had to get out of that room just to feel like I could breathe.  The strain on the nurses was clearly noticeable and they started double and tripling teaming the room because they could only handle it for a couple hours at a time individually.

By noon that day there was a clear understanding of what was taking place.  Patty had a massive case of pneumonia in addition to the original infection that she was fighting.  When an x-ray of her lungs was done her entire left lung was cloudy and white as it was filled with fluid.  Things were rapidly reaching a point that there was little more anyone could do.

I stayed with Patty throughout the day until my sister-in-law Celinde came to the hospital at 7:00PM that night.  At that point I could stand the stress and strain no more and I went to a family waiting room, got a blanket and fell into a fitful sleep.  Around 3AM I woke up and went back to Patty’s room.  The numbers on the monitor were even worse as her oxygen saturation was rarely getting above 85% and ventilator was doing everything it could to pump oxygen into her.  I stayed in the room for several more hours with Celinde before I headed home to take a shower and get Patty’s mom, Nancy.  As I drove home that Monday morning I knew the end was near and I knew I had to play a role it.

After grabbing a quick shower and getting Zack taken care of – I sent him to hang out with Celinde (who was home by this point) and my nephew at Tim and Celinde’s house, I got Nancy and headed back to the hospital.  We arrived around 10AM and headed directly to Patty’s room.  Due to the build up of fluid in her body, Patty’s eyes which had been closed for the last 10 days were open.  Her eyes opened because her eyeballs had become so swollen with fluid the eyelids couldn’t remain closed.  It looked as though she was awake but that wasn’t possible given the numbers on the monitor.  By now her oxygen saturations were even lower and I considered the fact that she might be brain dead already. 

Patty’s doctor – Peter McSweeney came to talk to us around 10:30AM.  I knew what he was going to say.  I knew what I had to do.  The discussion wasn’t long.  I made sure Nancy was OK with what I intended to do and she agreed.  I sat there in the conference room while I waited for the paperwork to be prepared.  I sat there and I couldn’t cry anymore as I had shed so many tears throughout the last week.  They put the paperwork in front of me and I signed it.  I signed the papers that said I wanted Patty’s life support terminated.

I had never wanted to be in that position.  Even if I only cut a few hours or a few minutes off of her life, I never wanted to sign those papers.  But I didn’t have a choice.  There was no way I could have let what was going on in Room 3403 continue. 

My brother came into the hospital around noon and Tim, Nancy and I hung out in Patty’s room talking to her and telling her things while everything was done and finalized according to hospital procedure.  She had never finished reading Harry Potter book 7 and she never wanted me to tell her whether Harry lived or not – but now I told her.  I don’t know if she heard me, but it was just something I had to do as Harry Potter had been one of her favorite things in life.  Around 2:15PM the charge nurse and one of the more senior nurses came into the room.  They talked to us a little bit about how they terminated life support and what might happen.  They asked us if we wanted to say anything else to Patty before they turned the drugs and ventilator off.  I got as close to Patty as I could and I kissed her on the forehead and told her I loved her.  I stood there and held her hand while they turned the machines off and I told her over and over that I loved her.  Then there was silence.  No more sound from the respirator, no more beeping alarms, no more clicking of the pumps supplying medicine to keep Patty’s blood pressure up.  And she was gone – without a sound, without a movement – Patty had left us.  The person in this world who I had been closest to, the person who I could complete her thoughts, the person who I had spent 21 years of my life with was gone.

I sat at the side of her bed with my head on her hand and cried.  I sat there until I began to feel her body start to cool.  The nurses disconnected all the lines and tubes and Patty looked at peace for the first time in a long time.

After a bit Tim took Nancy home and I sat there and just looked at the physical remains of my beloved wife.  I knew she wasn’t there anymore and what remained were just the trappings of whom she had been, but I didn’t want to leave.  Finally I forced myself to stop crying and I got up and gave Patty one last kiss on the forehead.  Then I turned and walked out the door.  As I walked out I took one last look at her as I knew I would never see her physical body again.  I closed the door and was gone.

On my drive home that day I cried and contemplated what was perhaps an even harder task than signing the papers.  I had to figure out how to tell Zack that his mother had died.  Throughout the previous days I had hinted to Zack that Patty wasn’t doing well and we should be prepared for anything.  But he couldn’t and wouldn’t accept that thought.  He steadfastly told me that mom was going to recover from this latest time on the ventilator and would do OK.  How do you tell a 9 year old kid that his mother is dead?  Do you just blurt it out?  Do you do some kind of song and dance around the subject?  What are you supposed to do?  No one had told me – nothing in my life had prepared me for this.

Zack was at my brother’s house when I arrived back in Willow Creek.  He had gone to the pool with Cole – my nephew and Celinde for a good part of the day.  What was so amazing about his day is that he had overcome his fear of water and was jumping off the diving board.  He had a good day and was happy – and I had to ruin it all for him by telling him what had happened.

We drove home and I continued to be tortured by how to tell him.  Once we were home I took him into the living room and sat him down on the couch and told him I had something important to tell him.  I didn’t beat around the bush but I didn’t just come out and blurt it out either.  I told him about how sick mom had gotten and how hard the doctors had tried to do everything for her.  And then I told him that his mom died that afternoon at 2:25PM.  He burst out into uncontrollable tears and sobbing.  For a while he just screamed and cried at the top of his lungs and all I could do was hold him and cry with him.

It took over 45 minutes for the initial shock and trauma to wear off before Zack could stop crying.  I asked him what we could do to make him feel better.  He wanted to “roughhouse”.  For the next 30 minutes we wrestled and rolled around on the floor with him trying to beat the snot out of me.  I let him that day – he got all the good moves in and routed me.  Then we started to deal with life that needed to be dealt with – it was really late and I needed to get my boy dinner and so went the rest of July 14, 2008.

Though Patty was gone from us we do believe she visited us that night.  Because things had been so crazy in the summer of 2008, there had never been any flowers planted in an elevated planter we have in front of our house.  The next morning we came outside to find one small solitary petunia in bloom in that planter.  It hadn’t been there when we went in the house for the last time the night before.  It hadn’t been planted as the ground was not disturbed in the slightest.  We came to accept that Patty had come and visited us that night and gave us that flower as a gift.  She loved to see that planter filled with lots of flowers every summer in full bloom.  You can chalk that flower up to a lot of things – but I do believe she sent it to us.

(Video montage from Patty's Celebration of Life Service)

This story has taken me the better part of an entire night and a bottle of wine to write.  So I am going to post it to the blog and go to sleep.  I have shed more tears while I wrote this than I have shed in a very long time. 

Rest well Patty Rae.  Someday we will be together again.  In the meantime watch over us and guide me to the best life I can make for that incredible boy of ours. But just know that even as someday in the future I move forward and start a life with a new partner you will never be forgotten.

Thanks and peace to all! ~J.

FYSRD!

I have debated whether to add this post script or not.  But it is ungodly late and I am exhausted.  So perhaps my judgement is clouded - I do not know.  Perhaps I will wake up at 7:00AM tomorrow and promptly delete it.

As I look back upon the loss of Patty I realize that there was nothing that could be done to avoid it once she had the bone marrow transplant.  She fought as hard as she could to survive and to go on and live a life with Zack and me.  But it wasn't to be.

On the flip side of this is the loss of my relationship with Shelly.  Here things were avoidable.  I could have done things differently and perhaps I won't have lost that relationship.  I am stuck in such a hard place as I still love her so much and there is nothing I can do to get her back.  I can't move forward and there is no way back.  I feel utterly alone and heart broken for so many reasons.  I know that I am going to be missing Shelly for a long time to come as I am still so deeply in love with her.  And on top of that I feel like crap because it didn't have to come undone.  I have only myself to blame.   So for now there is no future, there is no "other" who will be part of my life.  I am left with only the memories of the two great loves of my life.  The loss of one was unavoidable, but the second never should have been lost....  It just reminds me - always, always be thankful for what and who you have as you never know when it is going to go away.

And with that I am off to collapse before the roller coaster of life begins for another day.