Turkey Sandwich

When I was about ten years old, my parents decided that my family needed to split up for a couple of days so that we could visit both sets of my grandparents over the Thanksgiving break.  We drove the 400 miles to my mom's parents' house, spent the night, and then my mom and my two younger sisters stayed there while my dad, our yellow lab Dobie, and I continued down the highway 300 miles more to get to his parents' house.  

When we got there, my granddad was in the kitchen, with food cooking on the stove and in the oven and in all stages of completion all over the kitchen.  He was the big-time cook in the family; he loved cooking and was very good at it.  As usual, he let me sit on a tall stool and help him stir, measure, and pour, which thrilled me.  The kitchen was filled with conversation and great smells as we prepared and then ate the Thanksgiving dinner.

The next day, Grandmom had to work, but Granddad, my dad, and I stood in line so that Dad and I could ride the merry-go-round that their town sponsored every holiday season.  We ran a few errands and then ended back at my grandparents' house where we sat on the front porch and ate leftover turkey sandwiches that my grandfather had made.  I remember the taste of the sandwiches like it was yesterday; each one was cut into two perfect rectangle halves, on soft white bread and with the turkey chopped and mixed with a little bit of mayo and very finely sliced celery.  It was just the way I liked it.

Two days later, my dad woke me up before the sun was up, and we loaded our suitcases and Dobie into the station wagon for our trip back to my other grandparents' house.  As we hugged my grandparents, my granddad handed my dad a brown grocery sack and said, "Four turkey sandwiches for the road!"  We thanked him, with Dobie lying down in the "way back" of the car, we got into the front seat, and set out on on way.

A few hours later, Dad commented that he was hungry.  The thought of the perfect turkey sandwich was making my mouth water too, and so I climbed over the seat to get the bag of food.  I noticed that the top of the sack was opened, and when I reached inside, I discovered the only thing left in there was shredded plastic wrap.  Evidently, Dobie had helped herself to all four sandwiches as we drove down the highway.  

Dad and I were so disappointed.  We ended up stopping at a truck stop for lunch, which of course wasn't nearly as good.  To this day, I think the best part of the Thanksgiving dinner is eating a leftover turkey sandwich, cut into two perfect rectangle halves, on soft white bread and with the turkey chopped and mixed with a little bit of mayo and very finely sliced celery.  I attempt to recreate Granddad's version every year, but to date I have yet to eat one that is as good as Dad and I thought those sandwiches in the brown paper sack were going to be that day.  Maybe this year ...

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

Part 30 – Changes

Continued from Part 29

As we entered the second half of December, the tag-team effort continued, with one of my sisters or me staying with Mom and Dad almost every night so that Mom would have back-up support during the night and for as much during other times of the day as we could arrange.  One thing that I’m not sure I have explained clearly in this blog is the amount of one-on-one assistance and supervision that was required during the time that Dad was sick.  Physically, he needed help for everything, unless he was sitting in a chair or lying on the bed, and even then he wanted/needed to have things handed to him or arranged around him for safety and convenience.  One example of this that we learned through trial and error was how to position food and/or drinks so that spills, which were so embarrassing and frustrating to Dad, were less likely to occur.  Since he still had impaired sensation and strength on the left side of his body as well as visual-perceptual issues (he often didn’t notice things in the left side of his visual field), we had to place his provisions on the right.  Drinks were served in non-breakable, lidded cups, and food was given to him on a non-breakable plate or in a plastic bowl.  Dad didn’t seem to notice that we had rearranged the furniture so that the table that was previously on the left side of his recliner was now on the right side, and he didn’t say anything about how things were served or handed to him, which brings me to my next point … 

For as many changes as there were in Dad physically, there were even more changes in him mentally.  Like I've written about (here  and here), brain cancer is distinct; it's different from other types of cancers because it most often immediately affects one’s cognitive abilities, which alters the way information is received, processed, expressed, and/or retained.  And that, of course, influences very important things such as the person’s ability to fully understand the diagnosis, the prognosis, and treatment options, and this was absolutely true for Dad.

It also meant that Dad needed supervision 24 hours per day, something I’ve heard said in reference to plans of care for others who are very ill but with a different meaning in practice.  In the vast majority of other situations when around-the-clock caretaking is called for, there is one blaring difference as opposed to our experience:  the person who is ill sleeps - sometimes just at night, sometimes in a cyclical pattern for a few hours at a time, and sometimes even more than usual with lots of naps during the day after a decent night’s sleep - and understands that he/she should not get up and try to do things beyond their physical capabilities.  That was not the case with my dad.  Not only did he not sleep much, but it was not safe to leave the room or even to get in a short catnap oneself unless someone else was watching over him.  He did not remember or realize that he couldn’t do the same things in the same way that he used to do, and he did not have the foresight or the patience to ask for help or to wait unless someone was right there with him to remind or cue him.  Many times one of us would turn around to do something or go one room away for a minute only to find Dad trying to get up or, worse, already up either with or without his walker, a risk we were not willing to take.  We felt it was our job to guard over him and to ward off whatever danger we could, and this included protecting him from himself. 

As far as I could tell, Dad liked having my sisters and/or me there with him while he was sick, but he was very dependent on Mom; he wanted her to be right with him at all times and often got upset or anxious when she wasn’t able to be there.  In a statement that tore out hearts out, he said that he thought that he might not be around much longer and that he didn't like it when she left because he was afraid he wouldn't be able to tell her goodbye if something happened.  When he said things like that, it seemed like he did have a grasp on what was happening, but then he would say something about going to work the next day that brought the questions about his comprehension and memory back into play.  

The changes that we DIDN’T see in Dad were the ones we had been assured would happen soon after the Avastin had been administered, but, besides the beginnings of improvements in sensation on some parts of his left arm, we were seeing ZERO of the good changes from the much-touted Magic Bullet.  

The third week in December was set to be a busy one for my family:  Dad had an MRI scheduled for that Tuesday and also wanted to go to a Healing Service at a church near my parents’ house that night.  Round Three of chemo/Avastin was scheduled on that Wednesday.  We had written these things down on the Dry Erase board along with notes about which of us would be there on which days and the therapy schedule, but it didn’t seem to help much at all.  Time and details were not sticking in Dad’s short-term memory, yet I think he knew these things were important and so he frequently asked about what was on the agenda for the week, the day, and even the next hour.  The questioning, the confusion, the anxiety, and the support that Dad needed were all just part of the whirlwind of activity that was going on around the clock at my parents’ house during this time.  

I was hanging onto to Hope and whatever else I could for the time being, but I couldn't help but feel that we were in the middle of the storm before the storm.  As one of my sisters said in an email about our situation at this point:  “If Dad could think/process/remember the way other non-brain cancer people can, we could talk to him more about his Bucket List and how long to continue treatment and all those other so important things.  I've been reading too many library books about terminal cancer and living life to the fullest, etc, etc.  I hate to think that Dad knows -- somehow subconsciously or something -- more than we do.  The MRI coming up is so freaking scary.”

Up Next ... Part 31 - Battling

New Orleans On The Mind

My dad loved New Orleans.  He thoroughly enjoyed the food, appreciated the people, delighted in the music, and, of course, he LOVED the Street Beer!

 

Dad, making a presentation to some of his clients at a meeting

When people asked Dad what he did for a living, he said that he was “in the grain business."  During his career, he managed several grain elevators, supervised the opening of a rice processing plant, and, in 1993, joined an agricultural marketing consulting firm as a principal commodities broker.

Not long after he graduated from college and got his first job in the field, he joined the Mid-South Grain Association, a trade organization for people in the ag-marketing business.

During the course of his career in the grain business, the Mid-South Grain Association was a constant for Dad.  He served as president of the organization for several years and was secretary-treasurer for the past 18 years. He was always so appreciative of the numerous friendships he developed through the group and enjoyed organizing their semi-annual conventions, one of which was always held in February in New Orleans.

My sisters and I and our spouses tagged along several times when my parents went to the convention in New Orleans, always a fun time for all of us and a good opportunity for us to see Dad “in action” with so many people he had known professionally and personally for years and in some cases for decades.

When Dad got sick in late October, he had just begun planning for the convention the following February.  He still had to line up guest speakers, get people registered, and coordinate with the hotel where the meetings were always held, the Royal Sonesta.  He had quite a long To-do list going, and this became one of the things about which he worried while he was sick.

After Dad was admitted to the hospital, while he was in the Neuro-ICU for several days awaiting surgery, he was on several different medicines, including a massive amount of steroids to address the swelling around the tumor in his brain and a type of pain medication that we later learned resulted more in increased anxiety and talkativeness than it did in pain relief for Dad.

My mom, my sisters, and I took shifts, often in pairs, to be with him 24 hours a day, and, as I’ve mentioned, we took careful notes about everything that went on.  One of the things we wrote down was what he said, especially when it related to things about which he was concerned. 

During those long, scary nights in the ICU, he talked endlessly, often about not feeling well, having a bad headache, and being very tired, all of which made sense given what we knew about what was going on with him medically.

Just a few hours before his surgery, he seemed to finally be getting some rest, but he kept talking in his sleep, saying things like “I’m bored,” “I’ve got to know when I can run again,” and “I don’t know why I have to be here.”  He also said some things that weren’t in context, like “I’m going to the oyster bar,” and “I’m going to eat a dozen.”  In between comments, he kept repeating a number that didn’t make sense to us, and, after hearing him say that same number over and over, I decided to use my cell phone to Google it.  It turned out that the number was the telephone number to the Royal Sonesta Hotel in New Orleans.  Apparently, he had New Orleans on The Mind.

Over the course of the next several weeks, we made lots of notes of things that Dad told us to write to complete the Convention-Planning To-Do List, and then we passed it on to someone else in a leadership position with the organization.  Dad still worried about it frequently, but we tried to reassure him each time he brought it up that it was being taken care of. 

After Dad went on ahead on January 5, Mom was asked to continue taking part in the convention and with the organization, if she felt up to it.  She had worked side-by-side with Dad for all those years in planning for and putting on the convention, and she definitely knew the ropes.  Because Dad was so concerned that the convention go smoothly, Mom felt that carrying on with that task was a good way to honor his wishes and to uphold his legacy in the professional realm.  She did get the job done, coordinating the planning for the event, and, with my husband and me, attending the convention to represent Dad as he would have expected us to do. 

I’m sure that Dad was watching over us during our time in New Orleans and that, although he might have missed being there, he was proud that we honored his commitment and that the show went on.