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

Part 42 – Gearing Up

Continued from Part 41 

When I think back to the last few days of Dad’s hospitalization, I remember so clearly some of what was going on, but other things are a blur or even a blank. I remember sitting by myself in the hospital cafeteria with a turkey sandwich in front of me, but I don’t remember how I got there or how the food got onto my tray.  I remember the tears that I could not stop from falling in a steady stream and both wanting and not wanting to be comforted.  I remember taking a bite of the sandwich and thinking that it tasted like cardboard but eating it anyway, because, like a lot of things going on during that time, it was something that I knew I had to do.  I remember thinking to myself, “You have GOT to hold it together” but not being at all sure that I could.  I remember feeling so desperate and so heavy with the weight of the decisions that my mom, my sisters, and I had to make.  I knew there were things that had been done that couldn’t be undone, and I knew there were actions that had to be taken to make things right for Dad.  I knew that I still wanted to choose Hope, but I realized that, from that time forward, Hope was going to be coming in a different form.

We had another couple of lucky draws from the Nursing Assignment Fairy; Dad’s tag-team nurses this time, Day Shift Dave and Night Shift Jim, were very patient in teaching us about 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.  

Even with support from Nurses Jim and Dave, though, we continued to scramble to try to meet Dad’s needs, often apparently without success. "It's just too much!” Dad said numerous times, with despair in his voice and with pain in his eyes.  “Please, can’t I just go home?" he pleaded again and again.  It was, in a word, heartbreaking.

The doctors, especially Dad’s oncologist, still appeared to fluctuate between being baffled by the severity of Dad’s continuing medical problems and being blind to it.  Among the team of physicians involved in Dad’s care, no one seemed to really understand his declining status -- they said the tumor was "holding steady" and that his blood counts were “back to normal.”  For whatever reason, not a single one of them really saw Dad struggling to lift his head from the pillow or really heard him when he said, “I hurt so bad!” or “I just want to go home!” 

There is such a dichotomy when someone you love is catastrophically ill; on one hand, you want the medical staff to realize how unique and special your loved one is, but, then again, you also want them to swoop in with the attitude of “This is no big deal - I see this stuff every day!”  Either way, though, you expect them to accurately and efficiently assess what is going on and then to figure out what to do about it.  This absolutely did not occur among the physicians on Dad’s case.  Either they didn’t really see what was happening or they saw it but they didn’t know what to do about it.  By the third day after Dad had been moved from the ICU onto a “regular” floor, we had begun to see that we were going to have to figure things out on our own, and that is a horrible feeling, entering unchartered territory, in a state of shock, without a guide.

Despite the lack of progress in Dad’s condition, the oncologist was gearing up to send us home before New Year’s Day rolled around.  He was all set to take another three-day long weekend starting that Friday, and so on Wednesday he wrote orders for the nursing staff to show us how to check Dad’s blood sugar, how to administer the insulin, and how to flush the PICC-line so that it would remain open for use if needed.  He told us that he had discussed Dad’s case with the neuro-oncologists at Duke and with the local radiation oncologist and that they felt the best plan was to have Dad start radiation and resume the chemo and Avastin one week after he had been discharged from the hospital.  He suggested that we consider having Dad moved to an inpatient rehab facility “for building strength prior to the start of radiation.”  He informed us that Dad would need “to be able to move himself onto the treatment table and to maintain a seated position for several minutes at a time in order to sit for the radiation treatments.”  (That, to me, was like someone telling me to run a five-minute mile; of course I wished I could do it, but, even giving it my all, it just wasn’t going to happen.)  When I expressed my concerns about Dad’s ability to withstand the radiation treatment, both in sitting for the treatment and in avoiding the possible side-effects such as a lowered immune system, the doctor’s response was, “Because he’s had a less than ideal response to the primary treatment, it’s a bit of a long shot that he will qualify for radiation and even more of one that the treatment will help, but I still don’t think it’s a crazy option.”  I asked him if the radiation could result in a functional improvement for Dad, and he said, “We just don’t know.  If the radiation is able to shrink the tumor, there is a small chance that things will improve for awhile.”  None of this was sitting right with me; I felt like not only were we being offered less-than-desirable choices but we were also being told that the odds were slim that any of the things being discussed would help Dad much if at all, if he even qualified to get any of them.  


When the oncologist left Dad’s room, I followed; I caught up with him at the nurses’ station and told him that we were worried about how we would care for Dad at home but that we wanted to take him home.  

“I just don’t see rehab as an option for him right now,” I said.  And then I pushed even further.  “I asked you when you first came on as Dad’s oncologist if you would let us know when the time came for us to call in Hospice.  Do you think that time is now?”  

He looked puzzled, but I kept at it:  “Other than a slight decrease in pain and his fever going down, there really haven’t been any changes in him since we got here over a week ago.  He’s completely dependent on us for everything, he’s miserable, and he wants to go home.”

“I’m not sure,” the oncologist said.

“What would you do if this were your dad?” I asked him.

“I know exactly what I would do,” he responded. “I have medical power of attorney for my dad [who is also an oncologist], and he has told me in no uncertain terms that if he is ever diagnosed with an aggressive cancer, he does not want treatment; he does not want measures to be taken that will prolong things.”

Wow, I thought.  “And so, about hospice?” I persevered.

“I think maybe there may still be some options we should consider.  He could stay in the hospital through the weekend if needed.  Let’s talk again in the morning.”

I said ok, but it wasn’t.  I didn’t understand how he didn’t understand what I was saying or how he didn’t see what seemed so evident.  How could he think that staying in the hospital “through the weekend” would make a difference for Dad, except to depress and frustrate him more?  And how could he have been so quick to give an answer as to what he would decide to do for his own father and not be of the same mind for my dad at this point?  I was baffled and so, so sad; I just didn’t get why he didn’t get it.

After he left the unit, I stood in the hallway outside of Dad’s room crying, and Nurse Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist.  “He doesn’t see what we see,” he 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. 

That night, we made a list in the Notebook of possible options, including having him go to rehab again.  (Based on my professional experience, I knew this was not really an option for a patient in such a severely depleted physical condition; based on my personal experience from when Dad was in rehab in November and made NO progress whatsoever, I knew it wasn’t an option we were even going to consider, but, because the doctors said they thought we should think about it, I put it on the list.)  Checking him into an inpatient hospice facility went on the list, as did taking him home with home health or with support from hospice.  Those were the options, as we saw them; none of them were good, and it was quite possible that none of them were even doable if the stars didn’t line up just right and if we didn’t get our ducks in a row first.  For a split second, it seemed like there were gray areas in our what-to-do, some sorting through of the pros and cons that needed to be done for each of the considerations.  But then again, looking at Dad, lying there in the bed, it quickly became abundantly clear:  what we wanted for Dad – what he wanted – was right there in the forefront of our minds, and that was for him to get to go home.  

We were very concerned about our ability to provide the quality of care that he would need in that setting, but we wanted to try to figure it out.  As had been the case during Dad’s treatment, we planned to operate as a team, and, also as we had been doing, we would take each hurdle as it came.  Our focus became finding out what we needed to know and getting set up to care for him at home; we were gearing up both physically and emotionally for what we couldn’t deny lied ahead.

And so the question became - How can we get him home and take care of him?  Looking at our list in the Notebook, the only way we could see it happening was with ongoing support from an outside source, and the only form in which that seemed to be available to us was through hospice.  At first, the decision to go with Hospice seemed like surrendering, but, as we met with representatives from different agencies and learned more about the process and the services, it started feeling more like taking control of the situation for the first time since Dad’s diagnosis. We told ourselves that we were just going to “use” Hospice … and then we could revoke, if things improved as we hoped they would.  The home environment will be therapeutic for Dad, I thought, and then he will start feeling better.  

Early the next morning, my sister and I caught the oncologist in the hallway before he went into Dad’s room.  Before we could even say anything to him, though, he said, “I thought about your dad all night last night, and I realized that what you said yesterday about calling Hospice is the right decision.  I want to talk to your mom and your other sister too, and then, if you all are ready to go ahead, I can write the order for a consultation from different hospice services, and then you can make a decision.”  We stepped inside Dad’s hospital room and saw that, thanks to the pain shot he had gotten an hour before, he was medicated into a sound sleep.  We all sat down around him, and, after further discussion, we said yes, we would like the orders to be written.  The oncologist looked at Mom and said, “I just want to be clear on this: are you ready to sign a DNR [do not resuscitate] order?  That will be required in order to get hospice services.”  No, of course we weren’t “ready,” I thought, but it is what needs to be done.  Mom took a deep breath and said she would sign the order. The way we saw it, Dad deserved to go home, he deserved to feel better, and he deserved a chance to enjoy his family, and if that meant using hospice, or signing a DNR order, or doing anything else, then that’s what we would do.

After the oncologist left, my sister and I talked to Nurse Dave 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.  The intake nurse from the first company gave us lots of information and then, when we asked her the “Dave” question, she said, “We are the only hospice service that has 24-hour crisis care, which is in-home nursing support for critical cases.”  After that, we interviewed the other two agencies, but we knew as soon as those words were spoken that the first company was the one we needed.  

When the oncologist came by that afternoon for his evening rounds, we told him which hospice service we were planning to use.  He said that he had heard excellent reviews about their services and that he would work with their physician to be sure we had whatever we needed to take care of Dad at home.  “I am going off duty for the next three days for the holiday weekend,” he said, “but I will call you at home on Monday to check in.”  He had tears in his eyes, and he seemed genuinely concerned as he turned to leave the room, but, as we came to find out, that would turn out to be the last time any of us saw or heard anything from him, ever.  

And so we met again with the intake nurse from hospice and, with her help, hammered out the details of setting up a delivery to my parents’ house of equipment and supplies first thing in the morning, and then she made an appointment to have Dad transported home by ambulance.  The next morning, my sister Jennifer and I would be at the house to get things set up there, my mom would ride in the ambulance with Dad, and my sister Nancy would drive Mom's car while following the ambulance.  Along with all the necessary medications and medical supplies, we would be getting a hospital bed with a special pressure-relief mattress and a Hoyer lift which could be used to gently lift Dad to move him as needed.  At last, we felt like we had the help that we needed, and the wheels were set in motion.

It felt buoyant to tell Dad that he was definitely going to get to go home.  As soon as the words were out of my mouth, though, he started trying to sit up in his bed as if he thought he needed to get ready to go right that second.  “It will be tomorrow, Dad,” I told him.  “We have to get everything ready first.”


“What’s to get ready?  I can just get in the car and go, and all of my stuff is already at home,” he responded hopefully.  I told him we had to be sure we had the medicine that he needed and that the doctor had said he had to stay in the hospital until the next morning, and he finally accepted that in a deflated kind of way.  He was ready to make big plans, though:  “As soon as I get home, I want to turn on the fire in the fireplace and the space heater so I can finally be warm.  I need to stretch my legs and then I’m going to play with Foster and the dogs and drink a beer, okay?” he said. 


With that, I smiled for the first time in a long time.  “Okay, Dad, that sounds like a great plan,” I told him.

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 Nurse 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.”  We wrote in the Notebook the wording we thought was better for him to hear, if and when the topic of Hospice came up:  This allows us to care for you at home.  We’re going to take care of you. You did a good job and now you get to go home.  And the clencher – You don’t have to worry anymore; you are going home.

To Be Continued Here:  Part 43 - Home At Last

Part 40 – Supposed to Be Better

Continued from Part 39

And so the New Deal was struck, the PICC line was placed, and – thankfully, I thought – our regular oncologist was scheduled to come back on duty after the long holiday weekend.  

The kids made posters and signs for Dad, which we taped all around his hospital room.  Our focus became encouragement, even more than before and even over medical intervention, and I believed that together we could WILL Dad to get better.

Making "We love you, Gramps!" signs

Overnight at that point, Dad’s emotions went from worry and sadness to anger to determination, with the latter aimed at eating.  Dad talked almost constantly about trying to eat, at one point even saying that he felt like his appetite would come back if he could just go out to eat. (Luckily, he acquiesced in that effort and agreed to eat some food that we got “to go” from a restaurant outside the hospital.)  The PICC-line was being used for blood draws and IV meds, but, when we asked when the supplemental feeding would begin, the night-shift nurse told us it wouldn’t be until later in the day at the earliest because a “nutritional support” consult had to be completed first, and she added that, if Dad continued to eat like he had been overnight, “the port probably wouldn’t be used for nutrition because it’s better for him to get calories by eating.”  

Right at 7 a.m., our regular oncologist came in to see Dad for his morning rounds, his first time to see Dad in four days. In what would become the second-to-most anger-inducing statement made around me by a medical staff member during the entire time Dad was sick (the first being said by the stand-in oncologist said on Christmas Day) , the oncologist jokingly said to Dad, “What happened? You were supposed to be better by now!”

Although I remember these words as if they had just been spoken, I don’t remember what I said back, if anything.  I do, however, recall what I WANTED to say:  “He was supposed to ‘get better’ from the surgery, from rehab, and from the Avastin!  We were supposed to be taking him to a Grizzlies game tonight instead of being here in the hospital.  We were supposed to have a memorable family celebration on Christmas at my parents’ house.  In fact, if we’re talking ‘what happened’s’ and ‘supposed to’s,’ he was supposed to live to be 100!”  There were so many things that were supposed to have been happening, but none of it was going according to plan, and at that point none of it even mattered; we just wanted the doctors to figure out how to get Dad feeling better.

After his opening statement, the oncologist looked at us sitting in the tiny, hard chairs around Dad’s bed in the freezing cold ICU room and said he wasn’t sure why Dad had been admitted to the unit in the first place.  He chortled at the surgical masks we were all wearing and said that, since Dad’s blood count was in the normal range even when he was admitted to the ICU, the neutropenic precautions hadn’t been necessary during any of the time we’d been there. 

With regards to the PICC line, he said, “That type of feeding will disturb blood sugar levels; it’s mostly sugar.”  I wanted to scream, WHY IN HELL ARE WE JUST NOW FINDING THIS OUT?  My blood pressure was rising by the second.  I so desperately wanted to keep liking this guy, I wanted to trust him, and I wanted him to come in and clean up the mess that I felt had been created in his absence.

The oncologist seemed to think that what had been being done while he wasn’t around was “overkill,” which of course pissed me off beyond belief.  (I don’t know if it made me madder to think that things weren’t handled correctly in his absence or just that he seemed to be second-guessing after his long holiday weekend.) He discontinued several medications and decreased a few others. He said he was adding a sleep medication and writing an order for anti-anxiety meds to be given as needed.  He said that he wanted Dad to go to a regular floor immediately, for his comfort and for ours and because he felt the ICU-environment “wasn’t working for him.”  (No shit, Sherlock!)  And then I asked him the question I knew Dad wanted me to ask the most:  “What’s it going to take for him to be able to go home?”  

“I want his blood pressure to be in a safe range, I want him to be getting up out of bed, and I want him to be eating regularly, and then I’ll discharge him.”  

“OK!” Dad said enthusiastically, as if all of that was easy.

At the time, I thought that the oncologist thought Dad was about to get better, and so I viewed these changes as a positive step in the right direction.  Looking back, though, I think at best the oncologist was short-sighted, under-informed, and/or thinking wishfully instead of really seeing Dad and his condition as they were; at worst the guy was throwing his hands up and had stopped seeing intensive intervention as being necessary or warranted.

By mid-morning, physical therapy had been ordered, the catheter had been removed, and Dad had been transferred back to the oncology floor.  I thought Dad would be encouraged, but he kept forgetting how much longer he had to be in the hospital and what had to happen before he could go home, and he was discouraged and disappointed each time he was told that he probably wouldn’t be able to go home for several more days.

Not long after we got to the new room, the Physical Therapist came in, and together she and I helped Dad sit up on the edge of the bed for six minutes, an effort that completely exhausted and dispirited him.  Following that, someone from Pharmacy came in and told us that TPN feeding would begin to be administered through the PICC line later that evening.  When I pressed her for details as to why it was going to have been more than 24 hours after the line had been placed before the supplemental nutrition would be started, she didn’t really answer the question but did enlighten us to the fact that, evidently as was standard for all patients who’d just gotten a PICC-line, Dad would be “started slowly” on the TPN feeding, at first getting 700 calories per day and then building up to a maximum of 1000 calories per 24 hours.  This was NOT what we had been led to believe before the line was placed.  We were told that the PICC line would provide an opportunity for much greater caloric intake.  I was enraged, but I gritted my teeth and stayed focused on Dad.  What was done was, well, done, and maybe, I reasoned, the extra calories that he could get that way would help him get strong enough to get the hell out of that place.

For the first several hours that we were in the new room, the nursing staff seemed to struggle to accommodate Dad’s needs.  Because it was still considered a “holiday week,” the regular oncology floor was shut down, and we were actually on the bone marrow transplant ward.  Apparently, the nurses on that floor weren’t at all used to patients with neuro-like problems; most of the other patients there were independently walking laps with their IV-poles trailing them, and some were even going back and forth between their rooms and the little patient kitchen to get snacks or ice for themselves.  

But we were floundering.  The removal of the catheter seemed like excellent news at first, but it soon became a source of great distress for Dad and for us.  Contrary to the oncologist’s apparent idea that Dad would regain his mobility and his strength as soon as he got out of the ICU, Dad, of course, was still bedbound.  In fact, he couldn’t even move himself at all in the bed, much less sit up or stand.  And thus maneuvering to use the bedpan or the urinal was difficult, to put it mildly (and, at that point, the idea of his using a bedside commode or getting up on a walker to make it to the toilet in the bathroom seemed like looking at the finish line of a marathon from the vantage point of mile one).

Humiliatingly and frustratingly to him, Dad had more than one mishap with the urinal.  We were ready to do whatever it took to help him, but at the same time we wanted to try to preserve whatever was left of his dignity.  When Dad’s sheets got wet the first time, I pushed the call button, and, when we hadn’t gotten a response more than 5 minutes later, I went out into the hall, found the nurse, and told her that Dad needed to have his sheets changed.  “They’re in the linen closet,” she told me with a wave in that general direction, as if that solved the problem.

Fortunately, at shift change we were once again blessed by the Nursing Assignment Fairy; this time the nurse that swooped in to support us was John.  Dad was still "giving it his all" to eat; when we clued John into the fact that we were very concerned about Dad’s caloric intake, John 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.

My 16 year-old daughter and I stayed with Dad for the first shift that night; Dad chatted easily with her and even said, “If you can find some popcorn and a Diet Coke, I wouldn’t mind sharing it with you while we watch something on TV.”  With John’s help, she procured the snacks, and together they watched “American Chopper” and then a show about hair transplants while he quizzed her about her plans for college.  

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from the bed sore on his lower back had continued to plague Dad.  John 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.

About 9 p.m. that night, John came in to give Dad his night meds, which, without notice to us by the doctor, had been changed to include a psychiatric medication called Restoril.  While I wanted Dad to be able to sleep at night, I was very concerned about this choice of medication because I knew that it also affected the muscles and of course alertness and that it could also have several side effects for someone as sick as Dad was.  I was also angered that the orders had been changed without any type of discussion with the doctor.  It was just one more example of the mis-communication (or non-communication) and the half-assing that was going on WAY too often.

Dad swallowed that pill and his anti-seizure pills, and, shortly thereafter, he began to get groggy.  His voice got so soft that we had to lean in close to him to hear him; with tears in his eyes, he said he wanted to be sure that Mom knew how much he loved her and that he couldn’t make it without her.  He patted the space in the bed beside him – his sign for “I want someone to lie beside me” – and my daughter carefully hopped into the bed and tucked in next to him as he drifted off to sleep. About an hour later, my sister Jennifer and her husband arrived for their shift, and, without saying a word, Jennifer and my daughter seamlessly switches places without disturbing Dad.  There would be more sleeplessness, more anxiety, more struggles with the urinal, and more medicine that night for Dad, but at least he knew beyond a shadow of a doubt that his family was there with him and, despite what was going on with the medical staff or anything else, that that’s where we planned to stay.

Remembering the days in the ICU and then in that room on the BMT floor, I remember so well feeling so impotent to stop what was happening or to do anything that truly seemed to be helping Dad.  I am certain that the care at that hospital in general must be better than what we experienced, but, except for the few instances of competence and compassion from a few member of the nursing staff, it feels like Dad's care was awful from the moment he was wheeled into the ER.  Having worked in health care for so long, I know what can sometimes happen – arrogant doctors shuffle in and out, people just work their shifts and do the bare minimum, revolving staff members see patients (and their families) as a short time problem to endure.  It’s not right; it’s not fair.  But Dad had been caught in the crossfire just the same.  

Coming Soon ... Part 41 - The Turning Point

Part 36 - ICU 2.0

Continued from Part 35

After a day of ups and downs, the oncologist made his final rounds before the three-day holiday weekend late in the afternoon.  He delivered a pep talk to Dad, who as usual “faked” how he was feeling in front of the doctor (“Doing great, Doc!”), and then the doctor asked us to step out into the hall with him.  I tagged along, and my sister stayed in the room with Dad. 

“I’ve heard from the nurses that he’s mentioned dying a few times,” the oncologist said, “and I just want to be sure before I leave for the weekend that you want the chart to reflect that you want ‘heroic measures’ to be taken should anything drastic happen.”  

Wow, I thought, as I looked at my mom in shock.  OF COURSE we want HEROIC MEASURES, I thought; we want a MIRACLE - we want him to be healthy again!  We want someone to be a hero the way Dad is to us, and if that takes ‘heroic measures,’ then so be it!

“What do YOU think?” Mom asked the doctor.

“At this point, I think he is still recovering from the infection, and I expect him to respond to the treatment for that, after which we can press on with the treatment for the cancer,” he said.  “So I would say we do not want a DNR [Do Not Resuscitate order] in place at this point, but I want to be sure you agree.”

“Yes, we agree,” Mom told him.  “We need more time.”  

Exactly, I thought, and we said goodbye to the oncologist and went back into Dad’s room.  

That evening, the night nurse (unfortunately not Meredith, who had the night off) administered two units of whole blood to Dad; as per the protocol, she gave him IV Benedryl beforehand, and as a result Dad slept soundly for the first part of the transfusion.  After that, though, he was very restless and talkative, although most of what he said was “mumbly,“ as we noted in the Notebook.  He had just gotten back to sleep at 3:45 a.m. when a phlebotomist (whom I referred to in the Notebook at “The Blood Bitch”) burst into the room, abruptly flipped on the ceiling light, and announced loudly that she needed to take blood.  As Dad stirred in the bed, I jumped up, turned the lights back off, and told B.B. that, unless the order had been specifically written for blood to be drawn at that exact time, she needed to come back later.  She retreated and returned again at 7 a.m.

The rest of that day, which was Christmas Eve Day, was a whirlwind of activity, disappointment, and stress for us.  We had quite a string of visitors that morning, and Dad seemed to get more disoriented and more distressed with each person who entered the room.  Shortly after the nurses’ change of shift, the stand-in-oncologist Dr. M came in to introduce himself.  He said that Dad would be getting a transfusion of platelets that day and that he was increasing the insulin dosage due to the increasing blood sugar numbers that had been noted over the past 24 hours.  

Next was a visit from the Physical Therapist, who tried to help Dad turn onto his side in the bed.  It seemed like every movement was not only exhausting but also excruciatingly painful for him, and, after a couple of minutes of listening to and watching Dad groan and grimace in pain, she said, “I want to get him sitting up at the edge of the bed again, but I’m concerned that doing so will agitate him for several hours.”  Looking at the anguish on Dad’s face, Mom asked the P.T. to come back later, and the P.T. agreed to check back that afternoon.

Next through our revolving door was a volunteer with a therapy dog.  Like the rest of my family, Dad loved animals, but he seemed totally disinterested in interacting with this dog, even turning his head away when the volunteer asked if he wanted to pet the dog.  “Thank you anyway, but I really just want to see my own dogs and my cat,” he told her.  

Things continued to spiral downward, with Dad becoming more miserable and with his condition becoming more perilous as the day progressed.  When the nurse started to give Dad a sponge bath, he yelled, “I know you don’t mean to, but you’re really hurting me!  Can’t I please just skip this?”  A little while later, in preparation for the platelet transfusion, she brought in the Benedryl, and two minutes later Dad was snoozing, even sleeping through a shot of 15 units of insulin, which, due to the alarmingly high blood sugar reading, was much larger than the 6 units he had been getting.

Not long after the platelets had been administered, Dad’s blood pressure and blood sugar levels started climbing so rapidly that the decision was made by the stand-in oncologist to transfer him to the ICU.  “There’s just way too much going on with him,” the nurse commented, and, terrified, we agreed.  As the arrangements were being made for the transfer, Dad started hallucinating; he seemed less in pain and more confused and in his own world, which frightened us even more.

Because of the skeletal holiday staffing, the Neuro-ICU was closed, and Dad was assigned to the Cardiac-ICU, or the “CCU.”  When we got the word that we were moving, we hurriedly gathered up our belongings, and Mom pushed a cart with our stuff on it as I speed-walked alongside Dad in the bed, which was rolled down several long hallways by the nurse and a transport aide.  I was worried that the movement of the bed would hurt Dad, but instead he called out “Whee!” each time the bed was rolled across a bump on the floor along the way.  

As soon as we got to the little glassed-in room on the unit, Dad was taken back out for another CT scan ordered by the oncologist due of his worsening condition.  As per the results of the scan a few days before, again no signs of bleeding or inflammation in the brain were seen, which seemed like good news but - with the improvement of his blood count - instead left everyone wondering as to what was going on and what should be done next.  

Up next … Part 37 – The Fight 

Part 3 - Whew, I Need a Vacation!

Even though the nights in the ICU were long and hard and scary, we did our best to make the time during the day not that way for Dad in the days leading up to his surgery.  We talked him into drinking milkshakes and eating hamburgers ("I'm going to have to have to run 20 miles to burn this off!" he declared before he consumed each thing we brought him.) We tried to keep our terror at bay in front of him.  We took turns spending time with him; between my mom, my aunts, my sisters, and me, one of more of us was with him around the clock.  We wanted to comfort and protect and care for him; it was start of our Whatever It Takes Plan, and we were solidly committed to being right there for his sake and for ours.


There were lots of medication adjustments during this time; it seemed like the plan was being cobbled together, and I desperately wanted the doctors to get their act together and figure it out!  Dad was being given a massive dose of steroids to address the swelling in his brain around the tumor site.  With the steroids, he couldn’t sleep.  The nurses kept asking him what his pain level was on the pain scale, and he almost always said it was around a 5 or 6 out of 10.  Sometimes the nurse that asked thought that number warranted pain medicine for him; sometimes he or she didn’t.  When he got the pain meds, he dozed for a short period of time, but, like during that first night, he was very restless, anxious, and talkative even in his sleep.


The oddity of the comments Dad made in his sleep was increasing; at one point he thought there were monkeys sitting on a couch in his room. (There were no monkeys and no couch.)  Some remarks were casual; he actually said “I’m bored” in his sleep at least ten times each night.  Some of the utterances he threw out didn’t make sense in the context in which he said them (“I’m going to the oyster bar and I’m going to eat a dozen!”), but we were usually able to piece things together and make an educated guess as to what he was talking about (often, for some reason, New Orleans).  Even in his sleep, he chattered about a few things he hoped to be able to do when he got out of the hospital; several times, he exclaimed, “Whew!  I need a vacation!”


He was obviously aware of the gravity of the situation on some level, because some of his sleep-talk involved worrying out loud about his health, about Mom, and about work and finances.  He wished aloud that his dog Buddy could sleep in the bed with him and wondered when he would be able to exercise again (“Hopefully this weekend,” he said, in answer to his own question.)  In between the short bursts of sleep, Dad was mostly oriented and very chatty; he talked about the fact that it was his birthday and how much he wanted to get out of the hospital to do something to celebrate.  He asked about when he could see his grandchildren and his mom, who was on hospice in a nursing home nearby.  It was all very overwhelming and very sad, and it made us want to close ranks, to hover over him to try to protect him, as we anxiously waited the surgery that we hoped and prayed would clear out that damn tumor that was causing all of this.


On the day before the surgery, the neurosurgeon paid Dad a brief visit during which he informed us that the full-body CT scan had shown no evidence of cancer in any other part of Dad's body.  We rejoiced, although that turned out to be both premature and naive; we later found out that it actually would have been better news if the cancer in his brain was the result of another type of cancer that had spread from elsewhere in his body.  (Other cancers are typically less aggressive and offer more treatment options than the type that Dad had.)  At the time, though, we were happy for what we thought was Good News; it helped us to steel ourselves for whatever else was coming down the pipe.


Dr. Personality (NOT) also ominously informed us that the MRI had shown a mass that was 3-4 cm in size on the right side of Dad's brain and that the tumor was irregular in shape which would make it more of a "surgical challenge."  Luckily, Dad was only half-listening at the time, and, to keep from alarming him, we asked the doctor to go out into the hall with us to discuss the rest of the findings.  There, in the glass hallway of the ICU, the neurosurgeon told us he thought the mass was brain cancer and that Dad would likely be in the hospital for three days after the surgery and then would start a pill-form of chemo plus radiation about ten days later.  We knew that Dad could see us through the glass wall, and so we held our faces still so as not to alarm him.  Before I could get the notebook with our list of questions, the doctor flew off down the hallway, leaving us with even more to worry about.

The neurologist came by later that day, and he answered as many of our questions as he could.  Some things, he said, we just had to wait and see about; I hated that - I wanted a Plan!  When we reported the lack of sleep and the restlessness Dad was experiencing at night, the doctor wrote an order for a different nighttime medication in hopes that Dad’s quality of sleep would improve.  He said Dad had to continue on the high dose of steroid and also on the anti-seizure medications indefinitely. 


Dad had had an EEG the day before to check for residual seizure activity, and we asked the neurologist about the results.  He checked the file and said the results weren’t back, which began the game of Pass The Buck/I Don’t Know – Ask Someone Else that we played with the medical staff over the next three months.


In between doctor visits, the nurse brought in a consent form for my mom to sign for the surgery.  I thought it was peculiar that it was the nurse who was assigned to go over the risks and then to get the permission, especially considering how very risky it would be, rather than the two physicians who had been by earlier; I wondered if the doctors just couldn't be bothered by such a task or if they thought the nurse had a better way (and chance) of doing what needed to be done in this case.  The risks were all there on the consent form in black and white; we hadn't been given any other options at all, though, so Mom signed what she had to sign and we steeled ourselves so that we could go back into Dad's room with smiles on our faces, as his Guards and his Warriors, ready to face whatever needed to be faced.

Coming soon … Part 4 - Numbers