Lessons

Life, for the most part, is full of the mundane, the predictable, the obvious, the day-in/day-out routine.  We get up each morning, get dressed, eat breakfast, go to work or school, run errands, take care of the kids, make dinner, clean up, and go to bed.  Repeat.  It is easy to become complacent, to take it for granted, and even to sometimes complain about the little things without realizing what a blessing things around us really are.

And then, in the blink of an eye, everything changes.  We are jolted out of our reverie, forced to refocus and to reevaluate pretty much everything.  And even as much as we might wish that things would go back to the way they were, things are changed.  We are changed.  And, for better or for worse, so is our perspective.

In a way, the holiday season was part of the repeating loop for me over the years.  Certainly the joy and the excitement were there, especially seeing the wonder and the happiness in the faces of the children in the family.  Looking back from this vantage point, though, I can see that I spent too much time worrying leading up to and during the holiday season each year.  I worried about when and how the Christmas decorations got put up, I worried about having the “perfect” gift for everyone on my list, I worried about what I would prepare for holiday get-togethers, I worried about getting a photo for the annual Christmas card and getting the cards addressed and mailed out in a timely manner, and I worried about making sure that my kids had an action-packed, memorable (at least what I thought was memorable at the time) holiday season.  A lot of the stress I felt during the season was admittedly self-inflicted.  And, as I see it now, a lot of it was unnecessary and unproductive. 

 As I got out the Christmas decorations this year, I thought about years past when I did the same thing and I thought about when my dad was sick.  The hustle and bustle was still present that year - it was just focused on a different set of priorities.  My kids did most of the decorating at my house that year; I was out of town helping to care for my dad a good bit during that the time.  I did 100% of my Christmas shopping online, much of it late at night in between conversations with Dad.  Some of the gifts did not get wrapped, and a few even got left behind in the transport between my house and my parents’ house, where my extended family gathered on Christmas Eve and Christmas Day, taking shifts being with Dad who was in the hospital in the ICU at that point. 

I will never forget how awful it was being in the hospital that Christmas.  The hospital cafeteria closed after lunch on Christmas Eve, and families of patients in the hospital had to fend for themselves for food for the next day and a half after that.  The roads were icy and travel was precarious, and everyone in my family was so, so sleep deprived and concerned about Dad and about each other.  None of us cared about opening gifts or celebrating; the only thing we really wanted to do was to spend time together and to do whatever we could to try to help Dad.

I thought about that a lot as I lifted each string of lights and each ornament out of the boxes again this year, and here’s what I realized:  As tough as things were that Christmas, not for one second did any of us lose sight of the value of being there together.  No one in the family ever said anything like this isn't fair or I'd rather be somewhere else or doing something else.  Together we struggled through my dad’s illness and death and together we have struggled through the grief since then, the day-to-day routines as well as the holidays that have come since then now colored in a very different way.  The lessons I learned from all that we went through that holiday season are things that I am certain will never leave me – things like how it’s more important to focus on the joy and togetherness of today than to worry about the details of tomorrow, especially when much of tomorrow is out of our control.  Like how it’s important to ask for help when help is needed and how stuff is just stuff.  Like how when one of us is sad or exhausted or discouraged or sick or hurt, we are strong as a whole.  And like how, even in the midst of the everyday, it's possible for perspective to reflect the riches that we are fortunate enough to hold in the moment.

The Shift

It always feels strange to have something significant going on in my life that people around me aren’t aware of.  I’m sure that’s true for most people; one common example of this is when it’s a person’s birthday and most of the people with whom he or she crosses paths that day don’t know that it is. Whether it’s something good or bad, oftentimes it seems like the information just isn’t comfortable or appropriate or relevant enough to share.  In many cases, I think it would feel awkward, somehow attention-seeking  or maybe even like bragging, to tell the people around me, and in some cases I don’t really even want them to know for various reasons – but it still feels odd, as if I am driving on a side street or an access road alongside the main highway.

That’s how it feels to me going into the week that marks three years from the time my life – and essentially my perspective and my bearings – shifted, the week that holds the series of days during which my dad was taken to the hospital by ambulance, when we found out about the mass in his head, when he had surgery, when we got the definitive diagnosis – and his 67^th birthday which we spent hunkered down in the Neuro-ICU, in shock and in terror.

There is such a maelstrom of emotions and thoughts going on in my head right now, a source of confusion that makes it difficult to know how to identify my feelings or what needs to be done to get me through the time ahead, by me or by anyone else.  Over and over, I wonder in shock how a span of three years has passed already.  I wonder how we got through those days that seem even more unbelievably difficult from my perspective now than they did at the time.  I wonder when each of the series of shifts in me occurred after that first shift – and when, if ever, the process will slow down or come to a halt.  I wonder whether it is better to try to forget about the panic and the pain of the days of my dad's illness or to let the remaining sadness and the swirl of other emotions that goes along with the anniversary of that first week play out; I wonder if sharing my feelings and my perspective is the right thing to do.  

Remembering what was happening at this exact time three years ago is oddly both grounding and disconcerting.  Thinking back about what my dad and the rest of my family were doing in the weeks and the days leading up to the beginning of the trauma, it was as if we were on an airplane right before the plane hit an air pocket causing a sudden drop.  In regards to the significance for me of the upcoming days, a lot like the people around me now, back then I had no idea that a shift was happening, that something was occurring in those days that was affecting someone close to me and that would eventually change everything.

My dad, helping his youngest granddaughter across a rocky path, just weeks before his diagnosis

A Letter to the Director of Nursing

In honor of Nurses' Appreciation Week this week, I am posting a letter that I recently sent to the Director of Nursing at the hospital where my dad was treated in hopes that she is able to use the information I provided to recognize three nurses at that facility who provided truly extraordinary care during my dad's illness.

Dear [Director of Nursing],

I am writing to let you know about three nurses who provided outstanding care for my father, William L. Bullard, when he was a patient on the oncology floor in December of 2010.

My dad was initially hospitalized at Centennial just a few days short of his 67^th birthday on October 23, 2010, when he was transported there due to disorientation experienced on a ten-mile run.  An MRI showed a large mass in his brain that was later revealed to be Glioblastoma Multiforme, which as you know is Stage IV brain cancer. He had surgery and spent a few days in the Neuro-ICU and then a few more on the Neuro floor, and, although in both cases the nursing care was adequate, my family was glad when he was discharged after a total of ten days there. 

A few weeks later, on December 21, 2010, my dad was re-admitted to Centennial, and again in the ER the nursing care was fair, in most cases competent but not outstanding by any stretch.  When he was moved up to the Oncology floor, though, we were lucky enough to have our case assigned that night to a nurse named Meredith who provided exceptional care for Dad and who took both Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor over the next several days.  She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well.  As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember. To us, Dad wasn’t a terminally-ill cancer patient; he our champion, an Ironman athlete, brilliant in thinking and indomitable in physical presence.  Very unfortunately, though, during the course of his illness, the majority of the health care workers with whom we came into contact appeared to see him just as a patient, and honestly it seemed like some of them didn’t really see him at all.

My dad was very sick and as a result was intermittently confused and distressed while we were in the hospital that second time, but he took an instant liking to Meredith, as did we.  She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie.  Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment.  “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.

Nurse Meredith, aka “Angie”, was with us again for the 7 p.m. to 7 a.m. night shift that second night we were on the Oncology floor (12/22/10).  My sister and I stayed overnight with Dad and were impressed by not just Meredith’s competence but also by her compassion and her coolness under pressure, particularly when things started spiraling out of control for my dad late that night.  For no apparent reason, his heart rate shot up and he started having trouble breathing; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Dad’s heart rate continued to climb, and then he started saying he was freezing and then making comments that we didn’t quite understand, with lots of talk about death which shook my sister and me to the very core.  Despite the temperature of the room being warm and several blankets being placed over Dad in the bed, his teeth were chattering so much that we had to strain to understand him. 

My sister and I were terrified; we agreed later that it was the first time we thought Dad was actually going to die right in front of us, and we felt completely helpless.  Meredith stayed right with us and was such a calming force for Dad and for us.  At one point, the three of us were almost lying on top of him trying to warm him up and to calm him down.  After more than an hour, we realized that neither verbal nor physical comfort measures were going to be effective in battling the panic and the terror Dad was experiencing, and Meredith raced to get a sedative for Dad, which, five minutes later, had him resting soundly.  

Looking back, I’m not sure that my dad would have made it through that night without Meredith, and certainly my sister and I would have been much more at a loss without her expertise and, more importantly, without her kindness, which is something that stays with us to this day.

Although Dad ended up being stabilized for the night, unfortunately his condition continued to deteriorate, and, on Christmas Eve, he was transferred to the ICU – actually, due to hospital staffing shortages during the holidays, to the CCU.  There we dealt with many challenging issues, some involving nursing and some not, but suffice to say our stay there was a terrible experience overall, and we were very glad when Dad was moved back to the Oncology floor two days after Christmas – and even happier when we realized that we had once again been lucky enough to be assigned to an exceptional nurse, this time in the form of an RN named Dave.  Again due to staffing problems that we didn't really undersand, my dad was placed on a unit that didn't really fit with his diagnosis; this time it was the Bone Marrow Transplant unit on the Oncology floor.  

My dad had been struggling to take in enough calories for quite some time; he often reported feeling “zero hungry” or, even worse, feeling nauseous at just the idea of food. When we clued Dave into the fact that we were very concerned about Dad’s caloric intake, Dave offered lots of “extras,” some of which Dad said “yes” to and then ate (including a Snickers bar).  Without even being asked, he brought extra blankets because Dad continued to say he was cold, and he provided extra pillows to prop Dad up so that he felt warmer and more secure.  Unlike our days in the CCU, with Dave it felt like we were no longer having to beg for what Dad needed; in fact, it seemed like Dave somehow anticipated not just Dad’s physical needs but also many of his emotional ones as well.

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from a bed sore on his lower back had continued to plague Dad.  Dave was excellent at gently re-positioning Dad in different ways in the bed so that the pressure was taken off that area; he made an effort each time he came into the room to explain what he was doing and why to Dad and to us and even had me demonstrate my understanding of skills like propping Dad up with lots of pillows and rolled blankets.  He wasn’t just acting as a nurse; he was also a teacher and a friend.

Tag-teaming with Day Shift Dave, as we called him, was Night Shift Jim, another nurse in whose care we were grateful to have Dad placed.  Like Dave, Jim was very patient in teaching us about how to address Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

After almost two weeks of seeing Dad in a downward spiral, one morning I stood in the hallway outside of Dad’s room crying, and Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist during which I had asked how we would know when it was time to consider hospice – and the oncologist had essentially said “Not yet,” which I felt like was not an answer to my question.  “He doesn’t see what we see,” Dave said.  “I know!” I wailed.  “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen.  Sometimes treatment doesn’t work.  Sometimes treatment isn’t what a patient really needs or wants.  Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.”   As my sobbing subsided, I considered his words carefully.  I knew we needed help and more information before making any kind of decision.  I knew we had to figure something out and that we needed to do it quickly. 

Later that day, my sister and I approached Dave to talked more about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically, ‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  I'm sure he realized the ridiculousness of my request - as if shielding Dad from knowing about hospice could save him from what I really wanted to protect him from - but he respected my grief process and also, I guess, my need to try to control the very few things that I possibly could at that point, and I was very grateful for that.

While Dad slept that night, my sisters and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and even helped us to make a list of supplies that we would need to have on hand at home, again honoring our desire to feel that we had some kind of command over an out-of-control situation.  He sang the praises of hospice care and of the support they had to offer, which we soon learned to be the absolute truth. 

Looking back at my dad’s last few days in the hospital, which turned out to be just about a week before he died, I am not sure my family would have decided to take Dad home on hospice there at the end without the input and the support we received from both Jim and Dave.  For my family and certainly for my dad, as my mom and my sisters and I have discussed many times over the past couple of years, while changing the setting in which Dad spend his last few days probably wouldn’t have lengthened his life any, having him at the hospital instead of in the comfort of my parents' home certainly would have changed the quality of that time for him – and for us, and that is why we will forever be grateful for the way things happened there at the end of Dad's hospital stay.

I can’t count how many times over the past couple of years I have intended to try to get a message to these three nurses to thank them.  I hope they are still with Centennial and that the details I have provided will help you to identify them so that they can be recognized, although appreciation in any form seems inadequate given the gift with which they left my family through the truly exceptional care they provided during the most difficult time of our lives. 

In case this does make it to Meredith, to Jim, and to Dave, though, here’s my message: thank you, and may your kindness and your skill be recognized and rewarded; my family will never forget you.

Very sincerely,

Stephanie Bullard Lancaster

Dog Tags

Sometimes when I think back to during the time when my dad was sick, I remember a detail that I had forgotten or overlooked in my memories before.  

Today I remembered his dog tags.

When I was growing up, whenever I asked my dad about his experience serving in Vietnam, he always talked about how his job there was to guard a building with weapons in it, often on an overnight shift.  

My dad was never a "night owl;" as far back as I can remember, he was much more of a morning person, and I guess that was true when he was in the service, too, because he often commented when he talked about that time about how hard it was for him to stay awake on his overnight shifts.  He said he usually ran around and around the building he was assigned to guard so that he would stay awake and alert during those shifts.  The only problem with this plan, he reported, was that he had to wear his dog tags at all times and, as they hung from the chain around his neck, they drove him crazy bouncing against his chest as he ran.  Ever the improviser, though, he thought of a solution to this problem too: he took the dog tags off from around his neck and put them in his pants - in his jock strap, to be exact. 

It's kind of funny to think that a person can be proud of someone else before that person was even born or before they knew each other, but I know it's possible, because, picturing my dad as a young soldier in a foreign land, before I was born, doing what he had to do to get his job done and to defend our country, I feel such a sense of pride and respect, the same pride and respect that I have had for him throughout my life. 

But those dog tags from Dad's days in Vietnam aren't the ones I think about most often these days.  The dog tags on my mind are the ones that Dad wore on a chain around his neck as a 66 year-old man as he trained for the Ironman triathlon.  He tucked those into his shirt as he rode his bike or ran, and, the day before he became disoriented on a run and our campaign against his brain cancer began, the chain that held those dog tags broke.  And so, on that fateful day, he set out for the first time in many months without any form of identification at all.  

I think when most people think about dog tags, they think about toughness.  That's what I think about, too, because it was that, along with his strength and resilience that day that allowed Dad to dig deep enough so that, even in his state of confusion coming from the tumor the size of a racquetball in his brain, he could remember not just his home phone number (which was called first by the police but went unanswered because my mom was out of town) but also my aunt's cell phone number, which he also recalled and then gave to the police who had been called to the scene because he somehow also remembered that my mom was out of town that day and realized he needed to call someone local.

I have spent time, some while Dad was sick and even more since he went on ahead, thinking about how things would have likely gone had he not had the fortitude to pull out that information in those few moments before he was taken to the hospital by ambulance, before he had a couple of seizures, and before he quit breathing and had to be put on life support temporarily until he could be stabilized.  It is nothing short of terrifying to think that all of that would have been going on and no one in our family would have been able to be notified so that we could all get there to be with him.  It's horrifying to think about the fact that he would have been a Missing Person for an undetermined amount of time, because, with my mom out of town overnight that night, it is highly likely that no one would have realized that he didn't make it home after his run that afternoon.  We would not have known that anything out of the ordinary was going on.  Again and again, it hits me that, even with as bad as it was when he first got sick and throughout his illness, it could have been worse.  At least we knew where he was, and what was going on with him, and at least we were able to be with him. 

Dad, wearing the dog tags, competing in what ended up being his last race, one month prior to his diagnosis of brain cancer

In the days just before and just after his surgery, Dad worried a lot about what he called "loose ends."  As it would be for any of us whose life was put on hold in the blink of an eye, it was unnerving and extremely anxiety-causing for Dad that he had not been able to prepare for the time he was having to miss work and everything else for which he considered himself to be responsible.  In the midst of the constant stream of worries he had about his health and about needing to take care of the responsibilities in his personal and professional roles in life, he said he wanted to get the chain that had held his dog tags fixed, "so that I'll have it ready as soon as I can get back on the road."

And so, sitting in the hospital room with him in the Neuro-ICU, I searched on the Internet and found a company that sold replacement chains and ordered one for him; he was visibly relieved when I told him that a new chain was being sent to him in the mail.  And that's where the meaning of those dog tags deepens in our story; instead of standing only for toughness, Dad's dog tags also represented Hopefulness, and we desperately needed everything we could get to bolster both of those qualities as we entered into a more grueling battle than any of us could even imagine at that point.

Part 41 – The Turning Point

Continued from Part 40

I suppose there comes a time in the life of almost every person with a terminal illness when they and the people around them realize they have turned a corner that is not for the better as they had hoped.  It’s that day, that hour, that moment when the stakes are changed and so is one’s perspective, when the focus of treatment becomes different from when it was a Cure.

I think that Turning Point in Dad’s illness was different for my mom, for each of my siblings, and for me.  For Mom, I think it was on our trip to Duke, first when she realized that Dad’s concept of time, which had always been absolute in him, was totally gone, and then when we got to the Brain Tumor Clinic and she noticed that Dad was the only patient there with his level of impairment.  As we rolled down the interstate and then as we rolled his wheelchair into the clinic the next day, her hope for a Cure was dashed.  (Side note:  People around that time kept telling us that we just needed to get used to a New Normal, and every time I heard that, I wanted to scream, “TO HELL WITH THE NEW NORMAL!  I WANT OUR OLD NORMAL BACK!”)

Our brother Lee has said that he saw the changes in Dad as so blaring when he saw him around Thanksgiving that he felt in his gut that Dad was not going to get better.  

For my sister Jennifer, the Turning Point came on the afternoon when she was at our parents’ house alone with Dad before his second hospitalization -- not when he fell, but after that, when he was in the bed, looking so frail, so helpless, and with his breathing so labored that she felt compelled to videotape it so that she could believe it, process it, and document it.

The Turning Point for my sister Nancy came a little later in our story, on the day after we brought Dad home from the hospital for the last time, as she listened to his voice get weaker and weaker and as she watched him, wrapped in blankets as if he were in a cocoon, being picked up by our husbands so they could move him from the bed to the couch.  He was so afraid that he wouldn't be able to communicate with us for much longer.  We were so afraid that he would fall off the couch because he could hardly move and that it would hurt him to move him.  We were all just so incredibly afraid.  

The Turning Point for me came as a result of a one-two punch on the second full day after Dad was moved out of the ICU into a regular room, three days before New Year’s Day and two days before we took him home.  The oncologist came by for his morning rounds and told Dad “the only thing in the way of going home for you is your strength.”  He ordered more OT and PT, and thus the gauntlet was thrown down; so depleted and yet so determined, Dad began talking about how he was going to exercise and eat,  “even more than before,” he said.  “I just want to do whatever it takes so that I can go home!”  

That afternoon, the OT stopped by and, with Dad lying in the bed, had him do 15 minutes of arm exercises (“Is that IT??” I wrote in the margin of the Notebook when I realized the session was ending after that.), and then the PT came in and helped Dad sit on the side of the bed for ten minutes.  After she had left, Dad realized that was going to be the sum total of his rehab activities that day, and he said, “I really think if I am going to have any chance of getting out of here, I should get up out of the bed.”  I summoned the nurse and a nursing assistant and told them of our plan.  Both were hesitant and doubtful, but, I thought, they don’t know my dad and they don’t know me – we ARE going to make this happen.  

Gritting his teeth and with almost total support to keep his legs from buckling and then with full support to slide his feet one at a time across the floor, Dad made it from the bed to the hospital-grade recliner before collapsing into the chair.  “Let’s see if you can stay up in the chair for 30 minutes,” the nurse said, as she and the tech left the room.  The next half-hour seemed excruciatingly long; my sister and I tried to cheer Dad on while he gutted out each minute.  He said he was cold and that he felt “achy all over,” and then, when his time was up and after we had helped him back into the bed, he got a terrible muscle cramp in his thigh and hip.  We could actually see the muscles contracting as Dad writhed in pain after the transfer.  We tried massage, we tried repositioning, we tried stretching, we tried a heating pad, and, finally, amidst deep and wounding pain, he begged for medicine.  The orders on the chart didn’t include anything that would even touch the pain.  DAMN the process that it takes to have to call the doctor to get permission for pain medication for a terminally ill patient.  Isn’t losing control and slipping away torture enough?  It took well over an hour to take away the pain from that horrible cramp in Dad’s muscle, and, as we learned over the next few days, the trauma of the episode could not be erased from his memory, taunting him and making him afraid after we left the hospital that we would not have enough medicine to temper his agony if the pain came back. 

Despite the pain and exhaustion, Dad took in a lot of calories that day, so much that by that evening he was nauseous from having eaten so much more than he had been used to eating.  When the dinner tray came that night, he said with a mixture of dread and fear in his voice, “Oh, no!  Not food again! I can’t stand eating – it makes me hurt worse!”

Watching him that day, I could see the anxiety and the weight of the burden of the task that he saw before him; eating had become not just an obligation and an encumbrance but an insurmountable challenge for him. Over the course of the days before, he had started apologizing and making excuses about not eating whenever I walked into the room, and, when I saw the deep remorse and the sorrow in his eyes, I knew it was not really a choice that he could make anymore. His body just could not do it. “The Deal is off,” I told him that night with tears in my eyes.  “I am so proud of you for trying so hard to eat, and from now on you can eat whatever you want, whenever you want, or not.” 

“Will I still get to go home, though?” he asked me earnestly.  

“Yes, Dad,” I told him.  “I just don’t want you to worry anymore.”  And then I turned away from him to hide the flood of tears that streamed down my face, an outpouring that would go on for the next week as we made the arrangements to bring Dad home, as we cared for him at home as his condition continued to worsen, and as we watched him slip away.

Coming Soon ... Part 42 - Gearing Up