Part 50 - Saying Goodbye

Continued from Part 49

The time our family had while my dad was on hospice was intimate and special.  We’d spent what time we could together and had taken every opportunity possible to hoard all of the good memories we could while he was sick, and having those last few days to care for him in the peace of my parents’ house and to be with him just a little longer was something for which I will be forever grateful.

Dad was the leader of our family, and he led us through this too, showing us the way.  We kept vigil, waiting for what we knew was coming but what we so didn't want.  Dad waited too. Maybe he was ready to die, but more likely I think he was just ready to be done with the suffering.  By all accounts, he waited as long as he could for us to be ready.  I’ve heard it said that sometimes people who are dying can control the exact time that they go; I believe with everything that I am that this was true for Dad, yet another display of just how strong he was, of just how much he was willing to sacrifice for his family, and of just how much he loved us.

As the sun came up on the morning of January 5, 2011, my sister Nancy, Mom, and I sat around Dad’s bed, taking turns holding his hand and talking softly to him.  I knew in my heart that he was holding on with every bit of determination he could muster.  It was obvious to us that he was waiting for something.  As the sunlight poured into the window, my mom, realizing the date, told my dad, “You made it, Bill!  You’ve made it to January 5^th.”  Five was Dad’s lucky number, as anyone who knew him well knew, and we thought it would comfort him to let him know that it was the fifth.  I knew that as much as it must have hurt Mom to give him the permission that we knew he needed to go, she did it because she knew he needed to hear it and because she loved him so much.  I told Dad that my middle sister Jennifer was on her way and that she would be there late that afternoon.  He didn’t respond, but I knew he heard us, and I knew he felt he needed to wait.

Over the course of the next few hours, his extremities began to get cold to the touch and, by late morning that day, his heart rate was up, his breathing was raspy, and his skin color was changing.  We knew he was not going to be able to hold on much longer, but, as well as we knew him, we knew that he would do everything he could to wait for Jennifer.  

As you would expect, there was a lot of crying that day.  We weren’t just crying in anticipation of the loss we knew was coming soon; we were crying for the loss of things that Dad had experienced in the ten weeks since his diagnosis, for the pain and anger in our hearts, and mostly for the time in the future that we would miss spending with him.  My aunt and uncle came over and brought food for us; my uncle said a meaningful prayer over Dad and then they said their goodbyes.  Mom, Nancy, and I each spent time alone with Dad, lying with him and talking to him, each of us promising him that we would take care of the others because we knew that’s what he was most worried about.

My other aunt picked up Jennifer at the airport and delivered her to my parents’ house as promised late that afternoon.  We had about five hours together after she got here.  We each had time to lie in the bed with him and talk to him. He fought right until the end, and saying goodbye was the most difficult thing any of us had ever done.

During the time I spent alone with Dad that day, I thought back to the dreams that he’d had while he was in the hospital, dreams he later told us about and in which he was so scared because he thought he would be lost and we wouldn’t be able to find him.  I so did not want him to be scared or to worry like he had in the hospital; I told him repeatedly that day that it was ok to let go and that he did not have to be afraid because we would know exactly where to find him and we would always have him with us in our hearts.  I believe he needed to hear those words, and I believe that he heard me.

When we realized that his breathing had changed, we knew it was time.  Our cries rose like sacred smoke, mournful and sad, with each of us doing our best to support him by telling him that he had finished the race and could go on ahead while knowing in our hearts that we would give anything – except requiring him to live in misery – to keep him with us. The moment we were waiting for had finally come, and Dad was released from us.  Into the stunned silence, Jennifer said, “Is that it?” and the hospice nurse nodded her head as we cried and tried to convince ourselves of the reality of what had happened.  After about a minute, Dad gasped one last time, fighting to the end.  We kissed him and tearfully told him we loved him as his body quieted.  It was, by far, the most emotional moment in my life.  My dad was the most vibrant person I had ever known, and I knew I was so lucky to have had him as such an influence in my life, but, in that moment, there was only sadness, and emptiness, and a sense of utter purposelessness and loss.

What I have known for sure from that moment on is that no matter how many days, weeks or months you are aware of an illness, no matter what the doctors have said, and without regard to the changes you have seen the illness cause in your loved one, you are never truly ready to say goodbye.  I realized even in that moment that I was going to have to work harder than I ever had before to gain perspective that would hopefully keep me afloat and eventually pull me through and, ironically, I knew that my dad was the one who throughout my life had given me that perspective.

Pictures that were on the wall in my parents' bedroom

After we had made the necessary phone calls and things had settled down, we took turns sitting in the bedroom with my dad while we waited for the head hospice nurse and then later the people from the funeral home to arrive.  As I sat in the room, I – a person who considers myself to be relatively unafraid and someone who  is able to witness most any medical procedure or gruesome detail – struggled mightily to hold myself together.  I found that it was so difficult for me to look at his body, so small and pale in the bed, but I didn’t want to leave him in the room alone.  I sat on the edge of the bed and looked only at the photos of him that hung on the wall.  I made my voice tell my mom that I thought Dad should be dressed in jeans and a running shirt and running shoes.  He had always looked so handsome in a suit, but that wasn’t really him.  Of course, none of this seemed like it was really him or me in my mind, and the only way I was keeping from completely losing it was to let myself think that none of it was really happening at all.  I desperately wanted to find a way to reach back in time and pull him back, all the way back to before whenever it was that the first cancer cell had started to grow.  But I knew that I couldn’t.  I was sick to my stomach, and I was engulfed by sorrow.  After awhile, I went upstairs and, for the hundredth time since the diagnosis came on October 23, I called my husband and cried so hard that I thought the phone would short out with him on the other line. 

We knew that Dad would no longer be where he was after that night but that he would always be wherever we were.  He wasn’t going to be lost; we would know just where to find him, and that would be in our hearts.  That belief, and the thought that Dad wasn’t having to endure anymore, was the only thing keeping me from coming completely undone.

We called my aunt, and she came over with a bottle of wine; none of us knew what to do or how we were going to get through the night, through the days ahead, or through the future without Dad.  While the hospice nurses were in the bedroom with Dad, we sat in the den and had a surreal conversation about funeral plans.  (I kept hearing “This isn't really happening” in my head, and I’m pretty sure there was some screaming going on in there, too.)  For as long as I could remember (WAY before he got sick), Dad had said that he wanted to be cremated and that he wanted a celebratory memorial service to be held after he died.  He had brought these topics up in conversation many times over so many years that we had just accepted them as not really being morbid or sad; we just looked at those wishes as being a part of Dad’s personality.  For as much as he loved winning a race and dancing center-stage at each of our weddings, he was very modest and didn’t like being “gawked at,” at he put it, and therefore an open casket or a big funeral service was not what he wanted.  And with his positive attitude and fun-loving personality, it was no surprise that he had stated his preference was for a celebration of life instead of a more traditional funeral.  Again, we followed his lead, and the plans were put in motion.

When the people from the funeral home came, Nancy and I sat upstairs; we could hear what was going on downstairs but we couldn't see it.  I knew I would not be able to bear seeing his body taken from the house.  There were more tears, and paperwork my mom had to sign, and then more tears when that was done and my aunt and then the hospice nurses told us goodbye.  

So much had happened over the course of that day and night; the shock and sadness of it all was almost crushing.  When I think about how my mom and my sisters and I went to sleep that night, I am sure the only way we did it was out of shock and sheer exhaustion, and mostly the former.  I remember that I was bone-tired, but I had trouble sleeping.  I somehow simultaneously felt like I had no energy but I also had restless, unfocused energy since I was not physically tending to Dad any longer.  I felt helpless and hopeless, and so much more; mostly, though, I felt lost.

After a few hours of sleep, we woke up and made phone calls as we drank coffee.  Mom called the funeral home and was told to come in that morning to make the arrangements.  We quickly got dressed and got into the car.  As we drove along the winding road, the same road that I had driven on with Dad when I was taking him to Sonic and listening to him sing Christmas songs just a few weeks before, I found myself getting angry at the obligations that I felt were pressing down on my family that day and in the days to come.  I thought about how odd it is that family members are expected to plan an important event (“to make arrangements”) when we are at our most vulnerable, in shock.  It seemed ridiculous, yet here we were, on our way to doing what was expected, mostly because we didn’t know what else to do.  

When we got to the funeral home, the funeral director (salesman) started things off by telling us that we couldn’t have a graveside service until after that weekend (even though it was only Wednesday) because they were backed up from the holidays and wouldn’t be able to complete the cremation process right away. As I sat there processing that information. Jennifer said angrily, “I am so sick of the ‘holiday’ excuse!  We couldn’t get our dad what he wanted to eat on Thanksgiving Day because it was a holiday, he didn’t get the medical care he needed in the hospital because of the holidays, and now this??”  The director apologized, but, just like the other things that couldn’t happen due to the other holidays we’d had while we were coping with Dad’s illness, it was what it was.  The funeral director said they needed to have the information for the obituary right away so that it could run in the newspaper the next day, which we felt was important so that notice about the memorial celebration we were planning on the following day could be included.  We started off trying to dictate our thoughts to the guy, but after a few minutes of watching him struggle to keep up with the many thoughts and emotions in the room, we convinced him that it would be better if we used his computer and just wrote it ourselves.  With that done, we finished up with the “arrangements” (a term I was growing to detest more by the second), and then we drove back to my parents’ house, exhausted again.

Sitting on the couch in my parents’ den that afternoon, I could see his car keys still on the dresser by the back door, and I felt like I might suffocate from the sadness.  His bike was in the garage, ready to be ridden; his shoes were piled in his closet, ready to be worn; his to-do list was on his desk in his office upstairs with items still to be crossed off … but he wasn’t there.  The anguish in my heart was palpable.

My brother arrived from out of state that afternoon, and my husband and my daughters got in just after that. Together, we made it through that night, and then we got up the next day and waited for the rest of our family to arrive.  Just before my sister’s husband and her children got to my parents’ house, a beautiful rainbow appeared in the sky, a comforting sight that made me smile through the stream of tears I had going. My cousin, who owns a restaurant in Nashville, coordinated the memorial service, which was to be held at her restaurant, and she and I texted back and forth to iron out the details. That evening, my brother-in-law set about creating a digital slideshow of photos to show during the memorial celebration, with contributions and suggestions from the rest of us about which pictures to include and what music to use for the show.   We took turns holding it together and, well, not holding it together, and, as it had been while Dad was sick, somehow it worked as a group effort.  

Mom and I decided to sleep in the master bedroom with the kids that night.  The slideshow creation and the supportive “togetherness” (Dad would’ve called it “binding”) continued after we had turned in for the night; in fact, as I discovered the next morning, because Kevin was the only male in the family with a full head of hair, the late night activities even included shaving his head in tribute to Dad and so that if Mom needed anything during the memorial service she could scan the crowd and look for a bald head.

From left:  my BIL David, my newly bald husband, my BIL Peter, and my brother Lee on the day of the memorial

Somehow we made it to the memorial service on time; we had asked my aunt to bring boxes of tissues in case those were needed, but we’d forgotten to get a guest book for people at the service to sign.  My sister-in-law dashed out at the last minute and bought one, just one of many things that seemed oddly important that day as we went through the motions like we were in a dream.  

The memorial service was a great tribute; we were touched by those who attended and by the words of love, respect, and gratitude we heard from so many people that day.  Did it matter how we handled the memorial service? I thought.  Did it matter what I wore or who came?  Really, nothing mattered, except that I was together with my family, but it helped a little bit to have others who cared about my dad and about me and my family surrounding us.  Did I understand why some people whom I felt would come to the service didn’t?  No.  Really, I didn’t understand anything that was going on or that had transpired over the past ten weeks.  I didn’t understand it, and I didn’t want to.  I just wanted to cry, and maybe even to crumble.  But I couldn’t, and I didn’t. 

This is what someone said to me at the service:  “The highest tribute you can give is not grief but gratitude.”  I appreciated the message, and I understood that the meaning was that I could best pay tribute to the man I loved so very much by being strong and by moving forward.  What I didn’t understand at the time was just how tough grief is, and what I didn’t know was how profoundly it would change me.

This is the end of the Behind the Scenes Story; however, it is not the end of the story.  

Part 49 – Being Called Home

Continued from Part 48 

Even more than I had hoped it would be, having a crisis nurse from hospice at my parents’ house around the clock was a relative bonanza for my family; it took some of the uncertainty and the heaviness out of the situation and freed up my mom and later my sisters and me from focusing on the medical care needed so that we could settle into our roles in our family, as it was, one last time.  It was such a relief to have the two crisis nurses that came – one from 7 p.m. to 7 a.m. and the other from 7 a.m. to 7 p.m.  – there to provide their expertise and to support and care for us as well as for Dad. For the first time since Dad had gotten sick, we didn’t feel the entries in the Notebook were necessary; in spite of the fact that we had spent so many days with medical staff all around us when Dad was in the hospital and while he was in rehab over the past ten weeks, it was the first time we really felt that someone other than one of us was up to the task of taking the reins in his care.  

Around noon on Tuesday, January 4, when Mom called to tell me that the hospice nurse had advised her to call to let us know that we needed to come home as soon as possible to be with Dad, she said, “This is the hardest call I’ve ever had to make, calling you all home.”  Through the fog of tears, desperation, and (still) at least a little bit of disbelief, though, I was grateful for the chance to come and for the chance to get to be with Dad again; somehow even then I had the perspective that the message of that phone call could have been worse.

On the road to my parents’ house that day, hope and denial were still so entwined for me, although the goal of both had obviously shifted.  My hope was that peace and comfort would be able to be provided for Dad and, truth be told, maybe even that he would need me one last time to play a role in that provision.  

I had read in some of the material the hospice nurse had shared that a person who is dying may sometimes wait for certain people to be with him before he goes on ahead and other times he may wait to be alone.  As much as I selfishly wanted to spent every last bit of time that I could with Dad, I told myself that, just as had been my family’s mission during the course of Dad’s illness, I had to be prepared to do whatever it took to care for Dad, no matter what that meant.  

I remember having to consciously force myself to stay in the moment and to focus on the act of driving on the way to my parents’ house, but I don’t remember what I thought about on the trip.  Denial was really what served as the vehicle that got me to my parents’ house that day; it was the glue holding me together so that I could function at all.  Hearing my mom say that time was very limited, that we needed to come home was like watching the last drop of glue being squeezed out of an already almost-empty glue bottle.  

I parked in front of their house and walked up the steps and in the front door, almost like it was a normal day.  I quickly hugged my mom and then went into my parents’ bedroom.  I saw my dad lying in the hospital bed – it looked like him, but it didn’t.  I could see the outline of his body underneath the blankets on the bed, and I could see his chest slowly rising and falling in a slow rhythm. The true vulnerability of his life could be felt in the room.  A startling thought popped into my head: “This life as we know it is going to end before I am ready. We’ve made it here, and I will do whatever it takes to take care of him, but I will never be ready.”  I remember the complexity of the emotions that were present in that moment, and I can still feel the numbness and the intensity that were so intermingled I could hardly breathe.

I couldn’t really believe it, but here we were.  Everyone had had such faith that he would beat the odds, and I was still surprised – shocked really - that his body that was so strong could not take it.  That we had gotten here this fast, or at all.  That we weren’t going to be the ones to beat the odds.  As I sat down in the hard chair beside the bed and took his hand in mine, I reflected back on the words that Dad had said repeatedly over the last few days when he was in the hospital:  “It’s just too much.”  He was right – despite his best efforts and those of the people who loved him, the cancer and the treatment were just too much.  What was happening was too much, and so was the grief, already.  Unimaginable, even in the moment.  All that was left to do was just to be there with him, to hold his hand and talk to him even if he couldn’t do that back anymore. I am not a touchy-feely kind of person, but, when there was no longer any need to get his favorite foods for him, when there were no doctor visits to schedule, no errands to run, no in-depth discussions to have, and no treatments to seek out for him, using touch to comfort and care for my dad was what I instinctively felt like doing.  Based on his reactions from over the past week or so, we knew that much physical contact or noise would likely cause him discomfort, and so again we followed his lead: we didn’t move him in the bed except when absolutely necessary, we didn’t play music, and we didn’t turn the TV on.  For our comfort and hopefully for his, we took turns lying next to him in the hospital bed or sitting right beside his bed and just holding his hand, sometimes talking to him, sometimes not, seeking that connection and doing what we could to let him know that he wasn’t alone.  

Mom had called my siblings at the same time she’d called to tell me to make my way to my parents’ house; Nancy left work and arrived not long after I did [she actually got a speeding ticket on the way there; not wanting to spend extra time explaining and probably as part of the cloak of denial she was wearing too, she took the ticket from the officer and got right back on the road without mentioning a word about the reason for her speedy driving], and Jennifer, two thousand miles away, booked a flight that would leave the next morning.  Our brother Lee, who lived 800 miles away, planned to fly in the day after that.

Marilyn, the crisis nurse that day, quietly alternated between writing notes in the chart, gently checking Dad’s vital signs, and efficiently administering medications to him, which were all being given in liquid form at that point due to swallowing difficulties.  She was very skilled and very kind; she reminded me of a woman with whom my parents had been friends when I was a child, which seemed comforting.  She asked if we wanted to be alone in the room with him and then considerately stepped into the kitchen for a while when we said that we did.  While Nancy and Mom sat with Dad, I followed Marilyn into the kitchen and asked her, “What can I do?”  I think I meant for Dad, but maybe I meant just in general.  I felt restless and so completely useless.  For all that there had been to do during the rest of the time Dad was sick, I was at a loss for what to do now. Marilyn folded me into a hug and then she told me: “You need to reassure him. You have to tell him he can leave when he needs to.”  Oh, god, how I didn’t want to hear those words, but I knew she was right.  I tried to steel myself for what I knew had to be done and what I knew was going to happen.

A little while later, as I sat quietly with Dad, I thought back to less than a week ago when decisions and plans were hanging in the balance and when Dad, in the meantime, was barely hanging on.  Late in the night on one of the last nights he was in the hospital, he brought up the subject of dying again, this time in reference to a dream he’d had when he was in the ICU a couple of days before. “It was so scary!” he said, and then he replayed the dream for us. In this one, he and several other people were hanging onto a wire by their hands.  A man he didn’t recognize was going down the line of people counting, and everyone in the dream knew that if the man called out an odd number when he came to a person that that person would be dropped from the wire and would die, but if he called out an even number, that person was spared.  Dad said he was so scared that he was going to be “counted with an odd number.”  He said he held on so tightly to the wire because he didn’t want to die because he was so afraid that we wouldn’t know where he was or how to find him if he did lose his grip.

Sitting with him in his bedroom as the sun started to dip below the horizon outside my parents’ bedroom window, I told my dad that he would never be lost.  I promised him that I would take care of Mom and Grandmom and my siblings and that we were so thankful to have had him to pull all of us together as a family.  I carefully put my head on his shoulder, and I said, “You can go.  But you have to come back to me!”  Immediately after those words had left my mouth, Dad started stirring in the bed, moving around and kicking the covers in an agitated fashion.  Instantly I knew without a doubt that he’d heard me, and I was ashamed of the selfishness behind what I knew he thought I was saying.  “Oh, Dad,” I cried, “I know your body can’t do it anymore.  I know you are doing everything you can to stay here with us, but it’s ok if you can’t.  You’ve finished the race; you’ve done everything you needed to do, and we will be ok.”  He settled down again, and I just sat there, quietly crying, biting my lip to keep from wailing because I knew if I did that he would hear that too.  I wanted to tell him that what I’d meant was that I hoped he could try to send me a sign, to come and be with me and the rest of the family later, in spirit, but I didn’t tell him that; I didn’t want to cause him any more distress, and so I told myself that he would do it anyway, without being asked, if he could find a way after he’d gone on ahead.

Sitting there with him in that room, holding his hand and watching over him: it was almost an out-of-body experience for me.  Who is this lying so helpless in the bed – it’s not my dad who was so strong, so active, and so full of life.  Who is the girl crying and telling him that she will be ok without him – that doesn’t seem like me, I’m the girl with the pigtails climbing trees or running alongside my dad, and I'm not sure it's true.  It didn’t seem possible, or real.

But it was real, and time was marching on.  The night-shift nurse came to replace Marilyn.  As the night wore on, Mom, Nancy, and I decided to take turns trying to sleep.  It felt odd yet also comforting to have the night nurse watching over us.  Lying with Dad that night, halfway in the hospital bed and halfway at the edge of my parents’ bed, I tried to focus just on Dad’s breathing, but my mind was racing.  I kept thinking about how the many things that usually seemed so important, so urgent, really weren’t at all.  It was the air, breathing, and being together with those we love that were paramount.  I just wanted to hold onto that togetherness for as long as I could, but, even as I drifted in and out of sleep that night, I knew all of that was out of my control, and I felt completely helpless.

When I think back now to that night and to the next day, which would be Dad’s last, I remember him as being so very vulnerable and undefended. Before my dad had gotten sick and before I’d watched his valiant efforts during the time he was sick, I thought those things implied weakness.  But, over the course of the past ten weeks, I had come to understand that it takes true courage to be that way without resentment and rage. In the end, Dad, with his kind heart and his trusting nature, folded himself into our arms, and that, along with holding on, was his final gift to us.

Up Next … Part 50 – Saying Goodbye

Part 48 - I’ll Love You Forever

Continued from Part 47

I’ve heard it said that in some cases when someone is dying he can exercise some control over the time that the going on ahead occurs; the person might have been waiting for something like a chance to finish something, he may need reassurance that those he is having to leave behind will be ok, or he may be holding on until a certain date passes or until certain people are present.  

I think all of these things were true for my dad and that, for as out-of-control as things were during the course of his illness, he was somehow about to commandeer every last bit of strength he had so that, although he couldn't stop what was happening, he could control the timing of things.  I think he needed to check some things off his list, not for himself but for us, and I have never admired anyone as much as I do him for the sacrifice, persistence, gallantry, and dedication that it took in order for him to achieve this.

On the first Monday of 2011, the hustle and bustle of my parents’ house had dimmed, with only my parents and my sister Nancy and her husband David there as the sun came up that day.  There had been almost constant activity, things to do, and caregiving responsibilities since the second Dad had gotten sick.  It still seems odd to me on some level that when his conditioned worsened, when he had gotten to the place that was obviously near the end of that illness, there was actually less for us to do for him.  We were still reeling from the shock of the decline, and thus there was a sense of confusion and conflict within all of us.  Each of us, whether we were physically in the house with Dad or not, strangely had some leftover energy but were at the same time almost completely drained.  Pacing the floor didn’t help, and neither did surfing the Internet for new ideas of things that might help Dad as we had been.  Talking didn’t help and really, among each other, it wasn’t even that necessary; without using words, we knew the pain that each of the others of us was feeling.  As different as we are in personality and in the exactness of each of our relationships with the man we so loved and so still wanted to save, we felt the same blows, the same sense of aching in our hearts, the same feeling of torment as we were realizing that we could not.

Mom, Nancy, and David had split the night shift with Dad, and after she showered and dressed for the day and came back into the bedroom to sit with Dad, Mom leaned over and kissed him and said, “Happy anniversary! I love you so much!”  Dad, who had been lying so still and so quietly in the bed for many hours, opened eyes and looked at her adoringly and then said, “I’ll love you forever.”  Tears followed, as they still do for me even now when I picture this scene in my mind; we were so sad and yet so grateful that he had made through to their 43^rd anniversary, and we were so touched by Dad’s efforts to convey his final message to Mom.

David and Mom stayed with Dad while Nancy went to work that day.  I have no doubt that Nancy was operating on auto-pilot, as was I at my job.  It was only due to the shield of the disbelief that any of us were functioning at all at this point, I think.   

Dad's case had been primarily assigned to a hospice nurse named Dave, who came to my parents' house mid-morning that day and spent a long time going over the details of Dad’s care with Mom and then gently examining Dad, changing Dad’s clothes and the sheets, all while talking to Dad very compassionately.  Dave again emphasized “staying ahead of the pain” with the medication schedule and then said that he would check with Mom again later in the day.  

Those of us who were not at the house were anxious and worried; Jennifer and I both spoke briefly to Mom after the visit from hospice that morning, and, although she reassured us that everything was being taken care of there, it was harrowing to feel so out of control and out of the loop.  Early in the afternoon, I called Dave from Hospice, who essentially repeated what Mom had told me a little earlier: we were in a holding pattern of sorts.  Like the hospice nurse from over the weekend, Dave was making no time predictions, but he did not mince words about Dad’s condition, which, for as hard as it was to hear, I was grateful for the directness of.  I told him that I was so worried about the stress of what was going on at my parents’ house, that we were standing by to come back to help and to be with Dad but that, because of the uncertainty of time and what would be needed for Dad on down the road, we just weren’t sure what to do.  After we had talked for several more minutes, Dave said that the hospice company could send in LPN’s on 12-hour shifts to stay at my parents’ house around the clock.  “We often do that when a family feels they are in crisis,” he said.  

I didn’t want to be a family in crisis, but I felt we needed the help or, more specifically, the guidance, the expertise, and the reassurance of someone with knowledge about what to do in a situation like ours.  “That would be great,” I told him, and I knew Mom and my siblings would agree.  We weren’t usually the type to ask for help, but there was no denying that we were struggling, and, as we had been during the entire course of Dad’s illness, we were willing to do whatever it took to care for Dad.  Dave said he would make arrangements for the first shift-nurse to come to the house at 7 p.m. that evening, and I felt a weight being lifted from my shoulders.  It wasn’t what we wanted – none of this was – but it was part of our perspective about what needed to be done, part of sticking together as a family, and part of loving and caring for Dad.

To be continued ... Part 49 - Being Called Home

Part 47 - Rose-Colored Glasses

Continued from Part 46

I once read that all mammals have approximately the same average number of heartbeats in a lifespan. If that’s true, it means that a smaller animal with a faster heartbeat does not live as many years as a human with a slower heartbeat. If that’s extrapolated to people, then a well-conditioned athlete with a slower resting heart rate theoretically would have a longer life than an out-of-shape person with a higher heart rate.  Not this time, though: that’s what we learned when Dad got sick and what was at the root of the utter sense of shock and disbelief that everyone who knew him felt first when he was diagnosed and then even more so ten weeks later when he died.  

There was no disputing the remarkable physical shape that Dad was in just prior to his diagnosis.  I'm not sure of the exact statistics, but I feel pretty certain that only a handful of 67 year-olds in the world can swim 2.4 miles, ride a bike 112 miles, and then run a 26.2 mile-long marathon, all without a break, and that is the distance of the Ironman triathlon in which Dad was set to compete.  Dad was well-trained, and he was ready for the race, and that was part of the reason we were so shocked by the diagnosis and by the events that followed.

Besides my dad’s exceptional physical condition, there were lots of things that influenced my family’s beliefs about Dad’s prognosis.  Even after the devastating diagnosis with the horrible prognosis was handed out, we had much more of a bias than is typically present about what we thought the outcome would be in Dad’s case because of some specific past experiences.  

Hit by a car while running a marathon ... still lucky!

As I detailed at the beginning of Dad’s story HERE, he had an extensive history of accidents and injuries and even some medical issues that came as a result of his athletic pursuits. More than anyone else I’ve ever known, though, Dad always seemed to have luck on his side in this type of situation (and a little perspective: it’s technically not lucky to end up with a broken leg as a result of getting hit by a car, but Dad always considered himself to be lucky because he considered other potential outcomes); historically, he was very adept at landing on his feet and at successfully dodging a bullet health-wise.

Another thing that made us think that Dad would defy the odds after the diagnosis was our experience with his mom, who had been very ill for over two years and who in fact had been receiving hospice care since the month before Dad was diagnosed.  Just after Grandmom’s 90^th birthday, my parents met with her doctor and, due to severe swallowing problems and progressing weakness affecting her, they were told that she likely had only had a few weeks left to live.  But her doctor and the hospice staff were wrong: she hung in there for almost exactly six months after she entered hospice care, and, in a story I will tell soon, I am certain that her death was directly linked to the timing of my dad’s.  Before she’d had a stroke at the age of 87, Grandmom had lived a very active, independent life, and that’s the lifespan I had expected for Dad (or maybe even longer, given current and future medical advances). Grandmom was tough, but she was obviously a generation older than my dad and, unlike Dad, her health had been declining for several years.  So when I heard the term “terminal” and learned about the expected prognosis for someone with Dad’s diagnosis, I used my family’s experience with Grandmom to our favor and decided to believe that the information didn’t apply to Dad, just like what we were told about Grandmom didn’t come true.  Simply put, I figured that if she could defy the odds and live six months longer than had been predicted, surely Dad, who came in younger and healthier and stronger, could KICK CANCER’S ASS, probably even with one hand tied behind his back!

Although I do it myself sometimes for lack of more appropriate terminology, it really isn’t very accurate when what my dad and my family went through is referred to as “a battle,” because this is another thing I came to realize during Dad’s illness: A battle is something that can possibly be won, and really, against GBM (the type of brain cancer that Dad had), there is no winning.  For many other types of cancer, fortunately, early detection and cure rates are increasing, but not for GBM.  We’d heard so many inspiring stories, even some about people with other types of cancer who’d been given a not-so-great prognosis and had proven the doctors wrong, and we expected a story like that for Dad.  Through networking on cancer support websites on the Internet, I made contact with a few people who had had brain cancer and survived long term, a few even who’d reportedly had GBM.  If they’d survived, why couldn’t Dad?  To me at the time, it almost seemed like a given that my strong, persistent father would pull through since a select few others had been able to do so.  But, as we came to find out, in the vast majority of cases of GBM, it’s less of a battle and more of a siege:

Looking back, I think Dad’s inability to grasp his own diagnosis made it harder for us to do so as well (or possibly: it made it easier for us to stay in a state of denial).  On the day before Dad’s surgery, which happened to be his 67^th birthday, he wondered aloud about the upcoming surgery and about what was wrong, as he put it, and he said, “Well, I know it’s not cancer.  I’m too lucky to get cancer!”

"Correction, Dad," I thought.  You are “too” lots of things to get cancer:  Too in-shape, too much of a positive thinker, too healthy, too in-the-middle-of-life, too much of a land-on-his-feet kind of guy, too much of a Good Guy, too NEEDED by so many people.  Like Dad, I didn’t believe it could be cancer, and, even after we were told that it was, I still didn’t really believe it was or that what would end up happening could happen.

Another thing that contributed to my family’s disbelief in the diagnosis and the potential outcome - to our wearing of rose-colored glasses - was that, given his history and fantastic physical condition, even the medical people involved in the case couldn’t believe the diagnosis or later the decline. One of these people was his doctor, a general practitioner who had treated him for colds and the like for about a decade.  

News travels fast in a small town, and we knew this would certainly be the case in the community in Missouri where my parents had lived prior to their move to Tennessee, the town where my dad’s company was based and where he still resided part-time so that he could work in that office.  And so on the day after Dad’s surgery, my sister Jennifer and I decided to call Dad’s hometown doctor to get his “take” on the situation; I guess it was part of our “leave no stone unturned” plan.  When we got Dr. Rod, as Dad called him, on the line, he said that he had heard the news about Dad.  “I just can’t believe it!  I saw him recently, and I thought he was the picture of good health!” he said.  Me, too, Dr. Rod; me too.  He wondered aloud if a course of steroid nasal spray that Dad had taken in the recent past might have caused a fungal growth in his brain:  “Maybe that’s what some or all of the mass really is,” he said hopefully.  [I later mentioned that idea to the neuro-oncologists at Duke, and they put Dad on an anti-fungal medication, just in case, or maybe just to placate me.]  And that’s how we learned that denial and bargaining are dishes enjoyed not just by those who love a patient but also sometimes by medical staff members too, a fact that we would see yet again with Dad’s oncologist towards the end of Dad’s illness when I had to point out how weak Dad was so that the oncologist would realize that it was time to call in hospice.  It's often said that there is strength in numbers, and what I came to see is that there is also great strength of denial in numbers as well.  With Dad, in fact, it seemed that pretty much everyone involved – at least everyone who knew him as the Ironman athlete that he was – was wearing rose-colored glasses.   

Dad, hammering in a stake to put up a tent in a field, not long before his diagnosis

Another factor related to our expectations about an exceptional outcome for Dad came from Dad’s oncologist and later, on an even greater scale, from the team of experts at the Brain Tumor Clinic at Duke University.  Over and over, we were told that the treatment plan being used for Dad had great healing potential and specifically that the medicine he was getting, Avastin, was “a magic bullet.”  Maybe I just didn’t hear and/or process it at the time, but I don’t recall a risk of a decline at the rapid rate at which it occurred for Dad ever even being mentioned during the pep-talkish treatment plan meeting at Duke or at any of the doctors’ appointments we had.  As the oncologist said the day Dad was admitted to the hospital for the second time, the chemo Dad was on wasn’t supposed to suppress his immune system; an infection as severe as he had hadn’t been seen before in others on the same treatment protocol.

As I’ve mentioned in the telling of this story, I served as the Microscopic Improvement Recognition guard during Dad's illness; whenever I was around Dad while he was sick, I was always on the lookout for even the smallest sign that he was getting better: after the surgery, during rehab, after the Avastin protocol had been started, and even once the massive amounts of medications were administered when Dad was so sick during his second hospitalization, I was diligently watching for an indication of his getting better.  On the day after Round 2 of the Avastin/chemo treatment, when I noticed that he was regaining some sensation in his left arm, I was convinced that was a sign that he was going to pull through.  I even said something to him that night about maybe writing a book one day about his incredible recovery.  “We’ll see,” Dad said, either not really interested in thinking about such a project or not fully believing that he would have such an impressive story to tell (Dad, the Ironman athlete, never thought of himself as that big of a deal; as dedicated, kind, and positive of a thinker that he was, he was also just that modest.)  “We WILL see, Dad,” I told him, with total conviction that he was going to get well.

The last reason for the rose-colored glasses wearing during Dad’s illness was perhaps the most reasonable:  we had to stir in some denial and some hope just to stay afloat in our massive state of shock, in the midst of the trauma.  

Even when Dad was so weak and sick in the hospital right before he went home on hospice, I was convinced that he just needed nutrition and sleep to get better.  I will never forget the words he said late at night a couple of nights before he got to go home:  “I need to remember to tell Mom [he meant my mom – he often referred to her as ‘Mom’ when he was talking about her to my sisters and me] how much I love her and that I couldn’t make it without her.  I am going to fight, as long as you all just help me remember to fight!”

I planned to help him remember and to help him fight, but, after we got him home, I realized it wasn’t really under my control or his.

While our bias was helpful in allowing us to hold onto hope while Dad was sick, it has served as a barrier in the processing and accepting of what ended up happening.  It’s why I thought he would be with us for a long time still, so much so that I left to go home that first Sunday in January after he’d come home on hospice.  It’s why I sometimes still talk about him in the present tense, and it’s why, even after everything, I still don’t fully believe that he is gone.

Up next ... Part 48 - I'll Love You Forever

Part 46 – Paving the Way

Continued from Part 45 

Dad and his league of protectors, November 2010

There were lots of surprises during the time that Dad was fighting cancer, from the first announcement that he was sick to the rapid downward spiral that brought hospice into the picture much sooner than I had ever thought could be possible.  But one thing that did not surprise me was the way those of us in the inner circle handled things.  Time and time again during the hardest ordeal any of us had ever gone through, we pulled together in support of not just Dad but of each other.  To be clear, though, we didn’t need a terminal illness, a phone call with terrible news, or a surgeon in the Room of Doom to remind us of how much we meant to each other; we were already very well aware of the preciousness of love and of life. 

But when I think back about the collection of things, both little and big, that my mom, my siblings, their spouses, and our children did to care for Dad during that time, it warms my heart; it reminds me of the bond that we share and the fierce love that we have for my dad and for one another. 

It stands to reason that a person’s spouse and adult children would make every effort and go to extremes in a life-threatening situation; one of the things that stands out in my mind as being exceptional though was the devotion of and the way that my husband and my brothers-in-law cared for my dad, which is something that I think exemplifies my dad’s relationship with the three of them, each of whom played a very important role in caring for my dad during the course of his ten-week long illness.

I suppose having a good relationship with the spouse of your adult child can be tricky, maybe especially between a father and his daughter’s husband.  A father is always supposed to look out for his “little girl,” and certainly Dad always did that for my sisters and me, but maybe in a less traditional way than some other fathers.  Dad wasn’t a hold-your-hand kind of guy in his parenting style; he always expected us to do the right thing, and he didn’t flatter us unless the praise was earned and well deserved.  Looking back, I see his method of “fathering” us as adults as one in which he trusted us to be able to take care of ourselves based on what we had learned while we were growing up, and that included his having confidence that all three of his daughters chose to marry good men, men with whom Dad could be friends and with whom he could share a mutual respect.

Another thing that held true for my dad was that he could always take a joke.  He wasn’t one of those people who could dish it out but couldn’t take it; in fact, he seemed to enjoy being the target of a prank or having people poke fun at him.  There are many examples in my memory bank of this, and some of these involve my husband, Nancy’s husband David, and Jennifer’s husband Peter.  One of their ongoing pranks on Dad over the years was dumping cold water on him when he was least expecting it on family vacations; there was great strategizing and even greater laughter each time they pulled this off. 

Photo 1 of 2 from Water Dump #1 (notice Peter being sneaky in the background)

Photo 2 of 2 from Water Dump #1 - Dad's response: "Man! That's cold!"

Result of Water Dump #2 (off the top of a houseboat)

Sometimes the laughter came from conversations between Dad and his sons-in-law, talks during which Dad always played the role of the dizzy-blonde.  During a family vacation about six years ago, our husbands were discussing computer programs they used in their jobs and the subject of needing support from their companies’ “I.T. guys” came up.  Dad thought they were spelling the word “it” and asked what the job description was for an “it guy.”  When they told him what “I.T.” stood for, Dad got really excited and proudly announced, “My company has an I.T. guy too!  We’ve all got ‘it’ guys!”  And of course that became one of the frequently repeated phrases during that trip and from that point forward.

Other times Dad’s own actions resulted in some friendly ridicule, and sometimes these incidents involved Dad’s fashion choices.  On at least one occasion, when Dad got ready for the day, one of us recognized that the jeans he was wearing weren’t actually his – they were my mom’s!  (We could tell because of the tapered legs of the jeans, which apparently escaped Dad’s notice when he put them on.)  When this was pointed out to Dad, he laughed at himself and said in a mock-confused sounding voice, “Huh?  Are these my pants?”  This became the standard statement in my family when someone was caught doing something scatterbrained, an expression that we use in my house to this day.  Another humorous exchange occurred at my house when Dad pointed out his new shoes to my husband; my husband took one look at Dad’s footwear and then asked, “Do they sell men’s shoes where you got those?”  It took Dad several seconds to process the fact that Kevin was implying that his new shoes looked like women’s, but once he did he couldn’t quit laughing about it; in fact, for years afterwards, Dad often asked Kevin, “What did you say about those new shoes I got that time?” and the two of them would crack up as they relived the conversation.

Sometimes Dad intended for what he did to be funny; he loved to get a laugh from others and obviously didn't mind it being at his own expense.  A few years ago during the SuperBowl, Dad evidently got bored and told Mom that he was going to take his Diet Coke and take a bubble bath.  (I'm guessing that she thought he was kidding, but he wasn't.)  When he got situated in the tub, he shouted for her to come in and take his picture so she could email to his sons-in-law, all for the sake of getting a laugh.  Here's the result:

On some occasions, Dad tried to reciprocate the pranks that were played on him, although it was a challenge because, like me, he typically had a hard time telling a joke, scheming without being detected, and executing his plan while keeping a straight face.  On one Christmas about seven years or eight years ago, Dad gave each of his three sons-in-law The Perfect Push-up (“As seen on TV!” he exclaimed when they opened their gifts.) and then sportingly challenged them to a push-up contest with the new gadget.  (I must report, to the chagrin of the three men who were roughly half Dad’s age at the time, that Dad was the champ of the Perfect Push-up Challenge that day!)

But for all the pranks and fun-poking that went on during the course of their relationships with my dad, Dad’s sons-in-law were as fiercely protective of him as we were while he was sick.  The respect and the love that they had for him were so evident and so touching, and it’s something I will never forget.   During the first few days after Dad got sick, as we waited for the green light for the surgery that would give us the diagnosis, it was mainly just my mom, my sisters, and me there in the hospital room with Dad.  On the day of the surgery, my husband drove from out-of-town to be with us as we waited while Dad was in surgery, and then he helped to hold me together when the neurosurgeon handed down the diagnosis and the prognosis.  From that point forward, my husband and my brothers-in-law became part of Dad’s league of protectors, a role in which they excelled because of their strong relationship with him from over the years.

On the night after Dad’s surgery, my mom, my sisters, and I were completely exhausted.  Kevin volunteered to take the late-night shift with Dad in the ICU.  As was par for the course, Dad slept “zero” that night.  Whether it was a tough-guy act or a state-of-mind from after the surgery that he had been dreading, Dad seemed less anxious with Kevin around that night; in fact, when Jennifer and Nancy got to the hospital in the early morning hours to relieve Kevin, Dad and Kevin had all the lights on in the room and were laughing, watching football, and discussing politics.  Not the sleepy-time setting the females in the family would have thought to provide, but just the right thing for Dad at the time, an oddly-placed sense of normalcy and some great male “binding time” (as Dad called any bonding experience while I was growing up.)

Later that day, my brother-in-law David arrived on the scene; like my husband and my other brother-in-law, David is one of the most compassionate people I know, and, also like Dad’s other two sons-in-law, he was perfect for the role that he played during Dad’s illness.  On the day after the surgery, Dad was still consumed with worry about time and somewhat disoriented about what time of day it was.  Over and over, Dad looked at the clock on the wall of his ICU room and incredulously asked if the clock was right; he just couldn’t believe how slowly time seemed to be passing. David came up with a strategy that helped Dad right away: he covered the wall clock with a shirt to cut down on Dad’s anxiety about what time it was. 

From the moment on the day after surgery that Dad was given the go-ahead to eat whatever foods he wanted, through Dad’s struggle to take in more calories despite his lack of appetite, to the last foods that Dad ever ate, his three sons-in-law were at-the-ready to get whatever Dad wanted to eat for him, at any time of the day or night.  They made countless trips around the clock to get foods Dad was specifically requesting from restaurants and the grocery store and served as short-order cooks when Dad was able to eat food at home.  They didn’t guilt or pressure Dad into eating, but the second he mentioned that he might like to have a certain food, they found a way to provide it for him, just in case.

When my brother-in-law Peter took a red-eye flight to join my sister Jennifer, my parents, and me in Durham on our second day of appointments at Duke, he served as the logistics guy, helping to get Dad ready and out the door on time so we could make it to our early-morning appointment at the clinic, figuring out that Dad was safer and more efficient using the wheelchair instead of the walker during the trip, driving all over town to find a hotel that wasn’t already booked for the night before Thanksgiving, finding a set of safety bars and borrowing tools from the hotel to install the bars on the toilet in the bathroom for Dad since the hotel was not handicap accessible, and then  driving the whole way home with Dad riding “co-pilot” that hectic Thanksgiving Day (with the two of them eating all of the gummy candy they could for entertainment along the way).  His presence was definitely calming for Dad and for us, and having him there for that part of our stressful trip was so helpful.

One of the things that Dad worried a lot about during his illness was having his face shaved.  (He wanted to have his head shaved like he usually did too, but, due to the staples and then the scar from the surgery, that wasn’t an option, and so Dad just focused on having a clean-shaven face.)  While something like that would not be of any concern at all to some men who were so sick, Dad was impeccable in his grooming; all my life, I can remember him shaving at least once per day, even on weekends.  Without a doubt, he was precise and proud – but not at all vain – about his appearance, a fact that did not change during his illness.  Many times both in the hospital and after he went home in between hospitalizations, Dad got help with his shaving routine from one of his sons-in-law because his dominant left hand still wasn’t up to par. 

At first, it seemed like having them help him might take away some of his dignity, but right away we could tell that, with the way they handled it, their support actually gave some dignity and a sense of independence and routine back to Dad.  The day before we left to go to Duke, we were all running around getting things ready for the trip.  Dad kept saying he needed to shave, and finally I asked him if it couldn’t just wait.  “I just need to shave,” he said insistently. “It just makes me feel better.  Hell, I even shave on vacation, and this certainly isn’t a vacation.”  Point taken. I didn’t trust myself with shaving him, and so Dad was so glad when David took care of it before we left on our trip, as he was when David helped him with it again in the hospital on the night before Dad came home on hospice. 

Peter, shaving Dad

My husband and my brothers-in-law were the muscle and the strategists behind the equipment and the furniture that needed to be set up or rearranged at my parents’ house during Dad’s illness.  They installed grab bars by the toilets and in the shower, moved couches and tables, and rolled up area rugs to make the environment as safe and as convenient as possible for Dad.  I will never forget the way they moved the hospital bed from the den to my parents’ bedroom and then so carefully and tenderly moved Dad so that he wouldn’t be scared or hurt.  Part of the peace and the comfort that we were able to provide for Dad once he came home was due to their presence, and, knowing the three of them so well and seeing how much they too loved Dad, none of that was a surprise.  Like my mom, my sisters, and me, they were paving the way, doing whatever it took to care for Dad, and that is something I will always treasure and value more than I can adequately express.

Up Next ... Part 47 – Rose-Colored Glasses