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.

Dear Santa

As far back as I can remember when I was a child, my dad made a point to remind my sisters and me every year on Christmas Eve that Santa liked to have beer left out for him at some houses instead of milk.  I remember asking Dad if Santa would mind if the beer was hot by the time he got to our house and Dad said, no, any beer is good beer, even a hot one.  

Fast-forward a couple of decades later when I told my own children that Santa liked beer instead of milk.  Things went according to my plan until my older daughter was asked to write a letter to Santa as an assignment in her first grade class.  The letter started out like most of them do: "Dear Santa,  Hi! How are you?"  It was written in very neat handwriting with good spacing and sizing of the letters, and I’m sure the teacher was very impressed, until she got to the more unique part where my daughter wrote, “My mom says you like behr more than milk do you? Even hot?”

My daughter finished the letter with her list of a few things she wanted Santa to bring her that year and a “Thank you!” and then signed her name at the bottom of the page.  She added a couple of little drawings out to the side which she often did in those days; I doubt that distracted the teacher from the Mom ♥ Beer message in the body of the letter though.  The letter was mounted on a piece of construction paper and taped to the classroom wall for all to see at the PTA Open House that week.  I remember telling my dad about it on the phone the next day and hearing him laugh through the phone as if it were the world’s funniest joke.   “It’s like a treat you gave to yourself years later,” I told him, to which he laughed even harder.

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 38 – A Blue Christmas

Continued from Part 37

On the afternoon of Christmas Day, a parade of specialists came to see Dad in the ICU.  Dad continued to be somewhat confused with bouts of head, stomach, chest, and/or throat pain and still with no appetite, although he ate some yogurt, a popsicle, and some ice cream with encouragement from us over the course of the day. 

All of the consulting doctors that day were new to our case, and we asked each of them to give us their opinion about what was causing Dad to be so sick and their thoughts about what should be done to help him.  When the neurologist came in, he asked Dad the standard orientation Questions, and Dad seemed fairly clear except for the fact that he thought he was 41 years old.  The doctor gently pointed out his actual age to him and then said that confusion as well as lethargy and weakness can stem from a severe blood infection like Dad had been fighting and also from wildly fluctuating blood sugar levels, which had been also been going on with Dad.  Dad listened earnestly and then asked, “Do you think I’m going to die soon?”  

I felt my breath catch in my throat.  “No,” the doctor responded evenly.  “In fact, as far as I know, all of the doctors here think you are going to get better.”  

“I thought I remembered that someone told me this morning that I am dying,” Dad said.

The doctor looked him straight in the eye and said, “I think your memory isn’t all together accurate right now.  Just a minute ago when I asked you how old you are, you said 41, and that’s not right, is it?”

“No, I guess it’s not,” Dad said.  

“I think some of that confusion is what’s making you wonder about dying, too,” the neurologist told him gently.  I watched Dad’s face, and I saw him trying to accept that news, trying to believe what he was being told, trying to swallow that pill, trying to get past his fear.  I could tell by the look on his face that he was only partially convinced, and I so wanted him to see that he needed to trust us when we told him that he was going to get better.  

The doctor reinforced to Dad that nutrition was very important and that he needed to eat in order to get better.  Dad agreed and said that he would try harder to eat even though he was “zero hungry.”  

Also in the lineup that afternoon were a neurosurgeon, who told us that based on the MRI and CT scan on file he agreed that the tumor seemed “stable,” and a cardiologist, who noticed on the latest lab report that Dad’s ammonia level was abnormally elevated, which can cause confusion, loss of appetite, stomach pain, and weakness.  [Side note: I later learned that an elevated level of ammonia in the blood can be a sign of kidney/liver failure, and I wonder now if this was the first sign that Dad’s body was starting to shut down.]  The neurosurgeon said that he was concerned about the high dose steroids that Dad was taking, and he made a slight adjustment to the dosage in hopes that it would help improve Dad’s condition.  Because we were watching over Dad like hawks and because we were searching so frantically for an answer, we asked the cardiologist about something that we had seen come up on the monitor readings over the past 24 hours for the first time: PVC’s, or premature ventricular contractions, otherwise known as an irregular heartbeat.  A PVC can occur for many different reasons, ranging from the onset of a heart attack to things like a side-effect of certain medications or from stress and exhaustion.  This reading explained the chest pain that Dad had reported (and that hadn’t really been addressed by the medical team) since he had been admitted to the ICU, and we were concerned that it signified a problem with Dad’s heart.  The cardiologist said that he felt it was related to anxiety and possibly to nutrition/hydration issues but that he would investigate it further should the pattern continue.

Evidence of a PVC on the heart rate monitor

Back at my parents’ house, we had the minimum of tradition covered for Christmas.  We took shifts spending time with the kids, each of whom also took a turn sitting with their Gramps in the room in the ICU that day.  We ate in the hospital cafeteria during the limited “special holiday hours” it was open that day (hours that are not so special to family members of patients who are sick enough to be in the hospital on a holiday); we were so sad and so worried, but, as we had been, we were together in our effort to help and protect Dad.

Dad, of course, continued to be friendly and polite to everyone with whom he came into contact.  In between visits from the doctors, Dad chatted briefly with the nurses and aides.  Even when he was in pain, he doled out thank-you’s and was obviously trying to keep what he considered to be complaints to a minimum.  At one point, he saw a woman mopping the floor just outside the room next to his on the unit.  He strained to move his arm from underneath the covers and then waved at her.  She was busy working and didn’t see him, and so he waved several more times.  Finally, he turned to my sister and me and said, “Why isn’t Kathy waving back?”  My sister and I exchanged a look and then asked him for clarification.  His explanation clued us in to the fact that he thought it was my sister’s mother-in-law and that he couldn’t understand why she didn’t stop mopping long enough to wave back.  He seemed convinced, even though the cleaning lady looked nothing at all like Kathy.  We decided to let him have this one and told him that she was probably just really busy, which he accepted, thankfully since we knew he was exhausting himself with all of the waving.

Dad continued to ask for reassurance that he wasn’t dead; he seemed to be trying to “catch” each one of us alone to ask us again, just to make sure we were all SURE.  And even then, even after being told by each of us whom he trusted so much and by all of the medical staff whom he respected, I could see the doubt in his eyes and hear the uncertainty in his voice.  It wasn’t like he thought we were lying to him; it was as if he was convinced that we didn’t really have all of the information, that we weren’t clear on all of the facts, and that we just didn’t know what we were talking about.  We had several surreal conversations and exchanges with him about being alive vs. being dead; a few times Dad asked, “How will I know that I’m dead?”  Finally, I pointed out the pulse oximeter that was affixed to his index finger and told him that the little red light on the device was proof that he was alive.  I wasn’t sure he would buy it, but evidently he did because from then on he kept a close watch on the light on his finger.

But still, Dad wasn’t done with that conversation.  Death and dying were very much on his mind; it was like he couldn’t shake the thought or the feeling, much like his body couldn’t shake whatever was going wrong with it.  Late on Christmas night, my husband, my mom, and I were standing guard over Dad in his tiny, freezing cold room in the ICU.  The three of us had our masks and gloves on to protect Dad and our winter coats and hats on to keep us a little warmer. Dad’s hospital bed was in the middle of the little room, pointing towards the nurses’ station and facing the sliding glass doors.  Behind him was a window that overlooked the hospital grounds.  I looked out the window and saw snow coming down hard; it was a white Christmas indeed.  A wave of despair hit me; I was so sad that Dad couldn’t see the big, beautiful snowflakes that were falling just outside his window.  For a second, I considered trying to turn his bed around so that he could see it, but then I realized that he was so sick and so miserable that he just couldn’t even care about anything else.  Like us, Dad didn’t need Christmas presents or money or material things at all; he just needed his family and their love.  My eyes went from Dad’s face to the window and back, and then Dad said, “What’s it like to die?”

Somehow the room got even quieter than it had been a second before.  As we had all been doing since Dad had gotten sick, Mom started to respond to Dad by reassuring him that he wasn’t going to die, but, for some reason, I felt an urgency to address his question directly.  Trying to piece words together in the best way that I could, with a shaky voice I said, “I think you just stop breathing, and then you don’t hurt at all anymore.  You won’t be cold, and you won’t have anything to worry about; you’ll just be at peace.”  I was hoping to target the things he seemed to be most afraid of; I was hoping to comfort him even though I really had no knowledge or basis with which to do so.  I wish I’d been more prepared; I wish I’d been more eloquent.  It’s one of those times in life that you can’t rewrite the scene, you can’t take back or add words, you can’t do it over. I just had to hope that it was enough to give Dad the peace he seemed to be so desperately seeking.

Coming Soon ... Part 39 - The New Deal

Part 37 - The Fight

Continued from Part 36

While Dad was having the emergency CT scan, the ICU nurse told my mom, my sisters, and me that we would have to observe Neutropenic Precautions, meaning we had to scrub, gown, and mask to enter Dad’s room.  OK, I thought, we can do that.  And then she dropped the bomb: she pointed to a sign on the wall that listed visiting hours in the ICU and the one-visitor-at-a-time rule.  Feeling panic rise up in my throat, I told her that Dad was unable even to use the call button to ask for help and that, unlike other patients, he rarely slept.  I told her that he didn't just want us to be there with him, he needed us there, and we needed to be there.  She said the only time they will make exceptions to the rules is when a doctor had written orders to that effect.  After a little more pleading by us, she called and made our case to the stand-in oncologist Dr. M, who agreed to write an order to allow us to stay with Dad around the clock, with up to two of us in the room at a time.

When they brought Dad back from CT, the nurse said he was not allowed to eat or drink anything, but she could not give us a reason.  My sister eventually argued her down on the issue, but in the meantime Dad was cold, thirsty, anxious, and exhausted.  A little while later, Dad started to complain of severe stomach and chest pain, and testing for heart-related problems was kicked into high gear.  WHAT IS GOING ON? we wondered, but we tried our best to keep the fear from our faces as we assured Dad that the doctor was going to figure out what to do to make him feel better soon.  After some additional blood work, Dad was given IV pain medicine, which knocked him out for a couple of hours, during which time my mom, my sisters, and I huddled to revise the schedule so that each of us could be there for as much time as possible around the clock, with at least two of us there at all times.  We were launching into survival mode, for Dad and in some ways for ourselves as well.  

The unit was freezing cold, and when we asked if the temperature in at least our room could be adjusted we were told no.  We kept Dad bundled with extra blankets, and we kept our coats on, at times even wearing gloves and hats in the room too.

To add to our problems and concerns, snow was really coming down outside, and the prediction was for snow and ice to accumulate even more overnight.  Our husbands and children were traveling from out of town, and we were all driving between the hospital and my parents’ house in shifts, at all hours of the day and night.  In addition, we had been so involved with all that was going on at the hospital that none of us had had a chance to get to a grocery store to buy food to have, and, now that night had fallen on Christmas Eve, stores and restaurants were all closed until the day after Christmas.  We were so consumed with the precariousness of the balance of caring for Dad and taking care of everything else that had to be done that we were overwhelmed by logistics, and the icy roads and that lack of sleep and stress that we were all experiencing weren’t helping any.  We ate dinner that night out of the vending machine in the ICU waiting room, taking turns eating and sitting with Dad, so full of worry and sadness that we didn't even acknowledge the crappiness of our Christmas Eve meal.

At the nursing shift change on Christmas Eve, Dad’s new nurse came into his room and introduced herself.  Her name was an unusual one, and, because she thought Dad was asleep, she spoke to us very quietly.  A few minutes after she left the room, Dad opened his eyes and said, “Did she just say her name is Worm?”  We told him no and commented that that would be a really strange thing for someone to have as a name.  Dad, as usual, had a different perspective, and he scolded us by saying, “She can’t help what her parents happened to name her if her name is Worm, and she seems nice.”  Point taken.

Like all of the nurses we encountered on the ICU that weekend, “Worm” was mostly nice and usually efficient but very business-like and not what you would call "warm." At times, it seemed like the nurses on the unit wished that Dad would just go to sleep and that those of us who were extras on the set would exit, stage left.  Like we had the first time Dad was in the ICU around the time of his surgery, we tried to fly low and make nice with the nursing staff, but we weren’t about to have Dad take a hit just for the sake of niceness.  Several times, we had to remind the nursing staff about certain medications that Dad was supposed to be getting on a specific schedule, including the fourth in a series of five shots of the Neupogen that was ordered to be boost his immune system.  Because the temperature in the room was so cold, we had to ask for extra blankets fairly often.  We were the only family members on the unit the majority of the time, and, time and time again, we commented amongst ourselves that if family members weren’t allowed to be there as much as we were with a patient like Dad, in the best case scenario, that person would be neglected at times, and, in the worst case scenario, the patient would be, well, a lot worse off. 

Dad was very uncomfortable and anxious and at least somewhat disoriented during this time.  As had been going on throughout his hospitalization, it seemed like every half hour or so a nurse or technician had to poke or prod him or – the worst for him – tear off a heart monitor lead, medical tape, or a band-aid.  Even just having someone move him to reposition him in the bed, to put a bedpan under him, or to put a thermometer underneath his arm was extremely painful for Dad, and having hair ripped off along with the adhesive was like medieval torture.  He started cringing and even startling whenever someone entered the room in anticipation of the pain any procedure or action might bring.  His stomach continued to hurt, and an anti-ulcer medication was added to the list of things being administered.   And, although we had been told not to adjust Dad’s diet with regard to the blood sugar issue many times by many physicians since Dad had been started on the mega-doses of steroids, suddenly the hospital starting sending diabetic trays for him, some of which were “liquid only.”  Dad was totally disinterested in food of any kind; we fed him ice chips to keep his throat, mouth, and lips moist.  As the hours ticked by into the wee hours of the night, Dad’s frustration and anxiety levels grew; he was very annoyed if anyone made noise or talked around him, and so we started texting each other from one side of his bed to the other to communicate when necessary in the dark, cold room. 

Christmas morning arrived with Dad in exactly the same state as the previous day, if not somewhat worse with regard to pain and despair.  The Infectious Disease doctor came by to report that Dad’s blood work looked “normal” and that she wasn’t sure why his mental status and pain levels weren’t improving.  She wrote an order to discontinue the Fentanyl patch that Dad had for pain in hopes that his confusion would clear up.  Dad alternated between being discouraged and annoyed and kept saying things like, “Why can’t these people just go on?” and “I can’t do anything – I can’t even breathe right!”  It was heartbreaking; it made us want to protect and help him even more, but we had no idea how to do that.

Around noon that day, Dad reported that his stomach, chest, and whole body hurt really badly.  “I’m really worried that I’m not going to make it!" he said.  We hit the call light button, and the nurse came in and gave him pain medicine, after which he didn’t sleep but he told us his pain wasn’t as bad. 

A few minutes later, Dr. M came into the room.  “I’ve got no news for you,” he said right off the bat.  “I’m recommending a feeding tube for nutrition for him.  It’s my guess that he’s got something else going on in the head,” and then he pointed at his own head, as if to emphasize or to clarify his point.  

Wait a damn minute, I thought.  This isn’t some breezy interaction in an elevator!  And HOW DARE you speak about a patient – MY DAD – like he isn’t RIGHT THERE or like he DOESN’T UNDERSTAND what you’re saying about him.  By the time I had processed this, though, the guy had turned on his heel and stepped out of the room.  I looked at my mom and said, “I’ll be right back.”

What happened next is one of my clearest memories from the whole time we were in the hospital, maybe even from the whole time Dad was sick, and MAYBE EVEN from over the course of my whole life.  

Dr. M was at the nurses' station, writing in Dad’s chart. “I need to talk to you about my father,” I told him, using every bit of restraint I could muster.  

“Oh?” he said, looking up from the chart.

“We need some answers and we need some kind of action, some sort of plan. Why is he not getting better, and what do you intend to do to help him?” 

“Look,” he replied, “It’s Christmas Day.”  AS IF THAT WAS NEWS TO ME, AS IF THAT EXPLAINED ANYTHING, AS IF THAT MADE A DIFFERENCE TO MY DAD OR TO MY FAMILY.  I came unglued.

“We are aware of that,” I told him, with tears of fury in my eyes, “but it’s not Christmas to my dad, or to us!  He is miserable, scared, and so sick.  I don’t care what day it is – DO SOMETHING!  It’s YOUR responsibility to do something about it and to take care of him, regardless of what day it is.”  

“I understand,” he said, in what could only have been seen as a very condescending tone.  

“No, you don’t!” I yelled.  “You can’t understand – it’s not your dad in there suffering while no one does anything to help him!”

“Ma’am, I do understand,” he said, “because I have been through cancer myself.  I had prostate cancer several years ago.”  

AS IF, I thought!  “My dad has brain cancer!” I screamed.

He took a step back, and for a moment the unit was completely silent.  I could hear the clock on the wall ticking, and I could feel the eyes of every person in the area on me, but of course I didn’t care.  “I am aware of his diagnosis, Ma’am,” he said, “but I’m not sure you understand the prognosis.”  

“I am very well aware of the prognosis and the facts,” I yelled as I clenched and unclenched my fists.  “What I don’t understand is why you think it’s ok to dismiss him as if there’s no hope, as if he doesn’t matter.”

After several beats of silence, he came back with “Ma'am, he is receiving adequate care.  I know how you feel, but sometimes patients just don’t get better.”  

Oh, no, he didn’t. Quietly, but with great conviction, I told that @&$#% that “adequate care” was not good enough for my dad, that this was not the end of the road for him, that my dad was not going out this way, and that it was his responsibility as a doctor and as a human being to DO SOMETHING to help him.

  

“What exactly do you want me to do?” he asked me.

What I wanted to do was to punch him in the face, but instead I told him, “I want you to figure out what’s going on with my dad.  I want second opinions and consults from every specialty area – cardiology, neurology, neurosurgery, and anybody else that you can think of.  TODAY.”

“It might be hard to get anybody to come in to consult on Christmas Day,” he said, still full of shit waffling.

“Are you saying that there is no one at all in these areas on call today on staff at this hospital?” I demanded.

Finally out of arguments, he acquiesced: he didn’t answer, but he averted his eyes and furiously started scribbling orders in the chart.

I knew I had offended him, and I am well aware of the Be-nice-to-the-waiter-so-he-doesn’t-spit-in-your-drink Rule, but this was literally a matter of life and death.  Christmas or not, my dad, like every patient, deserved the best care available, and I was convinced there were other things that could be done to help him.  Completely entrenched in my role of Daughtering, I was taking no prisoners, and one arrogant doctor was no match for me.  Tool.  With that Smackdown out of the way, things started to move along a little more smoothly during the second half of our tumultuous Christmas Day.

Up Next in Our Story ... Part 38 - A Blue Christmas