Chapter Six, Part 3: Things That Go "Hello?" in the Night

Dad, with a few of his favorite things - Foster, the newspaper, and a Sonic Diet Coke - December 2010

As we began what would become a very difficult, yet not-nearly-long-enough, December, my family prepared to batten down the hatches while we continued to wait for a sign of improvement in Dad’s condition.  Because of Dad’s continuing severe headaches, the local oncologist had said that he wanted to wait until after the second round of chemo and Avastin to begin tapering the steroids, which unfortunately meant a continuation of the sleepless nights and the other side effects like massive heartburn, sugar cravings, and brittle, rolling veins which were an issue whenever blood was taken.  Whatever it takes, though, we thought, and we pressed forward. 

Dad’s memory and reasoning continued to be affected, although what he would “get” and what he wouldn’t were sometimes difficult to predict.  We bought a dry-erase board and wrote notes and the daily schedule on it; like a shadow, it moved with him to wherever he was in the house in an attempt to help orient him and to decrease his anxiety and confusion.  Its usefulness was limited, though - sometimes he didn’t realize that he had forgotten something or that he wasn’t aware of something that he needed to know and so he didn’t think he needed to check the board, and other times he knew he wasn’t thinking clearly but he forgot to refer to the board for support.  Ironically much like the training plans Dad had always written out for himself as he was in training for one race or another before he'd gotten sick were the words the were always written at the bottom of the board: “Recovery Plan: eat, sleep, and exercise well everyday.”  The sleeping was pretty much out of Dad’s (and our) control, but we wanted him to give it his all to try to eat healthy (instead of the junk food the steroids were making him crave, and later instead of not eating much at all) and to exercise, a very strange set of reminders for he who had worked to do both every day of his life.  (Side note: also ironically and sadly, none of those of us caring for Dad were following those three rules at the time either, because we were so consumed with trying to meet his needs!)

Oddly because Dad had always been such a "morning person" and so motivated to "get up and go," each day typically began with the necessary prompts and encouragement for Dad to get out of bed mid-morning, which seemed to be the only time he did actually sleep well – and that was because most often he had to be given a pain pill in the middle of the night which took awhile to kick in.  Home health therapists came in and out of the house throughout the day; it was of great frustration that they did not seem to coordinate with each other at all and thatthey appeared not to even consider the sleepless nights that were going on at my parents’ house or the desperate need for routine for Dad and Mom and those of us who were there to support them.  As with the therapy staff at the hospital and at rehab, it soon became apparent that they had little to no experience with working with patients with brain tumors; they tended to treat him more like a patient who'd had a stroke, and those two things are vastly different.


One day the PT came at 8 a.m. (an hour after Dad had finally gotten to sleep from the night before!), the OT came at 11:30, and the Speech Therapist came at 3:00, thus thwarting any type of bid for a nap or for venturing to Sonic for a large Diet Coke, Dad’s main pleasure for the day on many days.  The next day, the therapies were at 9:30, 1:00, and 4:00.  There were lots of last-minute schedule adjustments and some cancellations by the therapists, too.  The only consistency from the home health agency was the inconsistency.  Therapy was hard for Dad; he wasn’t the Road Warrior/gym rat that he had been for 50 years before.  He tried to get on the recumbent bike for some extra exercise some days, but mostly he just tried to tolerate the sporadic visits of the therapists and a select few other people who stopped by as he fought off exhaustion. 

The nighttime routine went like this: around 8 p.m., Dad started to comment about being ready for bed from his position in the recliner; every day was a very hard day for him, plus he really couldn’t sustain his attention long enough to watch TV or read and so he was, in short, exhausted, bored, and frustrated.  On the nights when we would help him to bed that early, he tended to fall asleep for an hour or two and then be up for the night, often with a severe headache and sometimes with awful heartburn too.  Most nights, we would try to keep him up longer and attempt to get him to eat a healthy snack so that he could have something in his stomach and stay up until at least 10:00 p.m., at which time he would make it to the bed, where he would put on his reading glasses, prop up in the bed with pillows, and try in vain to read.  He seemed to alternate between a Lance Armstrong book, the December issue of Triathlete magazine (“I doubt it’s going to be my ‘best season ever,’” he said every time he looked at the cover of that edition), and a binder of info on brain cancer that I had put together for him, complete with highlighted sections about nutrition and exercise and articles about how effective Avastin was in treating GBM. 

When the 20 minute-long period of reading/re-reading concluded, Dad started demanding that Mom go to bed, too.  When she did, he was typically super-chatty for a couple of hours, and then he always asked The Nighttime Question: “We’re going to beat this thing, right?” 

As unaware (and therefore unconcerned) as Dad usually seemed about the gravity of his condition (a good thing in our eyes at the time, although looking back I see that it should have been more concerning than comforting to us), he did seem to know on some level what was going on with his health.  Obviously,things weren't great – he had gone from being able to bike 100 miles over rolling hills as part of a moderately easy workout day to not being able to ride more than 10 minutes on a recumbent bicycle in his dining room, not to mention the whole can't work/can't drive thing.   Of course, Mom always responded to The Nighttime Question with a resounding, very confident, “YES!” and then crossed her fingers that he would be able to relax enough to sleep some over the next few hours, which he most often did not.

On the nights that one of my sisters or I slept on the couch in the next room for back-up support, almost every time, there was a need for a tag-team effort around 2:00-3:00 a.m., at which time Mom went to the couch or the guest room to get a few hours of sleep and the back-up person joined Dad for the late night shift.  Anxiety was a challenging bedfellow, and, when coupled with a bad headache or that stupid heartburn, Dad was up for the count.  If Mom or one of us dozed for a few minutes or even just stopped talking for a brief period of time in effort to get Dad to settle down so that he could sleep, he often called out into the dark, “Hello??  Is anybody even here?”  Nope, there wasn’t much sleeping going on for any of us.  

Some of the late-night conversations were, perhaps oddly, really enjoyable. Others were about musings or dreams that Dad had, the latter of which were almost always on the darker side.  Many were just discussions about memories of the past, intertwined with fear and worry in the present and hope (desperation) for the future.  Dad was the most optimistic person I had ever known, and it was one of my main goals at the time to foster that in him, to protect him from knowing all of the cold, hard, ugly, sucky truth.  I believed in the power of belief, and of that we had just enough to get us through the day (and the night).

Something that started while Dad was in rehab and continued to increase in the month of December was Dad’s frustration level that resulted in intermittent flashes of anger.  He was the most easy-going person I knew, pre-cancer, but the combination of sleeplessness, anxiety, headaches, indignity from the lack of independence and privacy, and – last but not least – the rage that is normally seen after a frontal-lobe brain injury, not to mention the emotions seen in people on high-dose steroids as he was, were a tough combination to overcome.  Depression and Anger were not welcomed guests; they invited themselves over just as the cancer had, and all we could do was try to explain things to Dad and to ourselves and to hold onto every ounce of compassion, understanding, patience, and love for this man that was our hero.  He wanted his life back – hell, he just wanted to have some privacy and to be able to sleep.  We wanted that, too, and so much more for him.