This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
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 ...
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 (ornon-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.
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. OFCOURSE 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.
There are a lot of things about my dad that someone who didn’t have the privilege of knowing him well might not really understand - things that were such a part of him, things that really made him the person he was, things that I want to be sure to always remember. Here are a few:
*Many times when he wanted to buy my mom a present, he couldn’t figure out what to buy, and so he went to a store that sold women's clothing and just bought everything on one of the manikins, including the shoes and jewelry. He would point to a manikin and say to the sales clerk, "She looks about the same size as my wife. Can I please buy everything she has on?"
*He tried desperately to keep up with technology, including social networking, because, as he said, "I need to stay connected!" However, he often got things in this category confused. Despite many lessons from his grandchildren, he never understood how other people could see what he put on his Facebook profile. And he sometimes got mixed up about the term "text" and called it "twist."
*Whenever he competed in races that he didn't really have a chance of winning, he often made up a category and proclaimed himself the winner of that. For example, once after a biking race, he said, "I didn't win my age group, but I was the first guy over 50 to finish who didn't wear biking shorts." (He wore running shorts when riding his bike early in his biking "career.")
*He was preparing to do an Ironman triathlon, at the age of 67.
*He thought it was a good idea to “round up” in the amount of exercise time – he regularly told my mom that he was going to run or bike for a certain amount of time and then actually went for longer, basing his time on how long he thought it would take her to notice he had exceeded his original “bid”
*He once told his grandchildren to load up in the car for a “big surprise,” which ended up being a sale he had found for some fake-Croc shoes AT A GAS STATION.
*He LOVED to try to jump out and scare people, and this became a long-standing family joke because he was TERRIBLE at hiding. And every ghost story he told ended the same exact way, with him saying something like "And the boy went up the ladder, climbing the first step, then the second, then the third, until SOMETHING GRABBED HIM - his friend!" (Even when the kids were young, they weren't at all scared by his ghost stories.)
*Anytime a holiday was coming up that involved a gift for him like Father’s Day or his birthday, he would suggest (repeatedly) that we give him the gift ahead of time. Then when the actual holiday rolled around, he would jokingly say that we didn’t give him anything. Which brings me to what made me think of some of these quirks …
Last night, I dreamed that I was talking to Dad on the phone, and he laughed and said, “Thanks for calling, but what did you get me for Father’s Day? I don't think I got anything from you.” After thinking about it, I now have a new plan:
CANCER IS NOT GOING TO KEEP ME FROM HONORING MY DAD ON FATHER’S DAYS FOR THE REST OF MY LIFE!
So here’s what I got you this year, Dad, and I hope you like it:
