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).
The last day of 2011. Looking backward, looking forward: isn’t that what we all do on New Year’s Eve?
New Year’s Day is typically a day of new beginnings, of looking forward to things that will change and to which we must adjust whether we want to or not.
For me, looking backward pulls in a memory of this day last year, the day we brought my dad home from the hospital on hospice.That was the new beginning for my family, but it was also an ending for us, an in-your-face reminder that life and death are not tidy or predictable, despite the best laid plans, logic, or effort.Obviously, there are lessons of life, love, grief, and much more that came from the journey my family took, many of which we are still in the midst, a shifting of roles, of perspective, a making of history that we did not see coming and that we were not sure we could withstand.
But withstand it we did, together, and we will continue to struggle through it as the process of adjusting and grieving continues. When we brought Dad home, I knew I wouldn’t ever be able to have life as it was before, and yet I had no idea how it would be going forward. This day as I remember it last year was the most physically and emotionally draining day I’d ever experienced. It was the first day that I felt it was acceptable not to have a specific plan. Maybe that was the exhaustion talking, maybe it was the beginning of some kind of acceptance, a stage of grief with which I am still struggling.
Resolutions? I’m not sure it matters. I guess it’s good to have a goal, but I have learned first-hand that what is going to happen, happens, regardless of the Plan. Out of respect for my dad and for my family, in the upcoming year I will try to be even more grateful, more aware of the beauty and of the momentousness of not only the big moments but also of the little ones, more generous, and (this one’s for you, Dad) always to err on the side of kindness. To have, as my friend Susan quoted from the bumper sticker she saw recently, wag more, bark less!
In a way, it saddens me to see 2011 come to a close; it marks too much time since I’ve last heard my dad’s voice or held his hand. A year ago, I could not have anticipated what would unfold during this calendar year. A year ago, I could not have predicted the range of emotions and the power of the grief that I would encounter. A year ago, I was just trying to get through to the next hour, the next day, with my dad.
Falls separate people in a very literal way: the careless from the careful, the clumsy from the coordinated, the weak from the strong, the unlucky from the lucky, and - as in our case - the unhealthy from the healthy. After a fall, one's first instinct is to reassure everyone, including himself, that it was "no big deal," that he is "just fine." It is natural for the one who has fallen to want to “shake it off” and forge ahead as if it didn’t happen at all.
This is an exceptionally hard part of my family’s story to recount because it involves two falls for my dad that marked a turning point for him and for us, watershed moments when Dad stopped being embarrassed about needing help. After the past couple of months of having given it his all to pretend that he didn't need assistance, he was completely drained, and it was the beginning of a struggle from which we just couldn’t disengage. It was heart wrenching and very sobering to see Dad’s acceptance of help after these falls and to see that he was starting to understand just how sick he was.
No one involved in what happened with Dad over the next couple of weeks could give any reassurance that things were ok or any explanation as to why he had gotten so much worse or why he couldn’t recover. We were on our way to the front lines of the battlefield, and we were soon to learn that we had only thought we knew what difficulty and devastation were.
On the Monday before Dad was scheduled for an MRI on Tuesday and Round 3 of chemo and Avastin on Wednesday, my sister stayed at our parents’ house with Dad, and Mom went out for a break with her two sisters. In a few hours’ time, Dad got up and sat for awhile in his recliner in the den and ate a few bites of food at my sister’s insistence, and then he said that he needed to get up to go back to the bathroom. As we had been doing over the past several weeks to help Dad with his balance whenever he walked, my sister held onto the waistband of his pants from behind him to try to steady him. As she recounted later, he seemed more unstable and weaker physically than ever before.
A few steps into the hallway, Dad lost his footing and fell to the ground just behind the couch. My sister cushioned his fall with her body, turning the fall more into more of a controlled collapse, but once Dad was down, he couldn’t get up. He tried, she tried, and they tried together to figure something out, but nothing worked. In the midst of their efforts, the doorbell rang, and my sister could see through the windows by the front door that it was Dad’s swim coach Ashley. She motioned her to come in, and together the two of them were eventually able to get Dad up using the back of the couch for leverage. After they helped him back into his recliner, he strangely acted like nothing had happened, even though he and my sister both had been in tears and had spent at least half an hour feeling utterly helpless on the floor before Ashley had arrived. Dad had great admiration for his swim coach, and my sister said later that she thinks the fact that Ashley was there was the only reason Dad was able to muster enough strength, courage, and perseverance to get up and act like he was ok.
After Ashley left, the Occupational Therapist came for a therapy session that had been scheduled the day before. My sister told the OT what had happened, but he really didn't seem to understand and/or care. He had Dad do some hand exercises from the recliner in an extremely short therapy session in which Dad was very obviously totally disinterested and disengaged. My sister asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed. The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak. They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom. Once they got him back into the bed, Dad immediately fell into a very deep sleep. It was so undisturbed and so very uncharacteristic for Dad at the time that while he slept over the next few hours my sister sat in the bedroom on the floor and watched his chest rise and fall the whole time. At one point, she took a video of Dad’s breathing pattern on her cell phone and then called me to tell me that something just seemed really, really wrong. (By the way, the therapist hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.)
I had planned to arrive at my parents’ house the next morning, and, since Dad wasn’t hurt physically, we decided to just let him rest until then so that the three of us could get him to the appointments as scheduled over the next couple of days. In full Bargaining/Denial mode, I told my sister and myself that Dad had just worn himself out with all of the activity over the past couple of days and that he just needed some extra rest.
That night, as was the routine during that time, Mom took the first shift with Dad, talking to him about the plan for the next day which included the MRI, the visit with the neuropsychologist, and the candlelight church service. Dad was still very anxious about the MRI but seemed to accept that we would be right there with him when the results were read the following day and that we just needed to get through it and then go from there.
Around 3:00 a.m., Dad informed Mom that he needed to get up to go to the bathroom. She turned on the light and then helped him get up with the walker and into the bathroom adjoining their bedroom. Dad had been soloing in the little “toilet stall” room and did the same that night, but after going to the bathroom he lost his balance. He fell against the wall and slid to the ground. Mom yelled for my sister, who rushed in to help. It was a repeat of the afternoon fall, except that this time even two people wasn’t enough to support Dad. They tried different maneuvers and various strategies but nothing worked. Finally, in desperation, they called 9-1-1.
Thinking that Dad would resist having other people come in to help, neither my sister nor Mom wanted to tell Dad that they had made the call. The ambulance arrived in a matter of minutes, and, when Dad saw the paramedics, a look of sheer relief washed over his face. Two strong men carefully picked Dad up and put him back onto his bed. They checked him over and declared that he somehow didn’t have any breaks or bruises, but after some discussion it was decided that they should transport him to the hospital due to concerns about the decline in his physical status that seemed to indicate a worsening in his medical condition.
Mom rode with Dad in the ambulance; Dad’s anxiety actually seemed to be mitigated by the decision to go to the Emergency Room. My sister called me and told me to meet them at the hospital instead of at my parents’ house as planned, I called our other sister, and we each began to make our way back to the hospital.
Recently, The New York Times invited readers to send in a photo that illustrates a story of someone close to them who died this year. Here's the story that resulted:
What a cool feature. It’s so hard to choose just one photo and just one story though, but here’s one that I’d like to add to the list:
This is a photo of my dad, William Lee Bullard, and my grandmother, Nellie Hine Bullard, both of whom died in 2011. In the photo, they are standing in the library of the church that my grandmother attended for over 50 years.
My grandmother was a voracious reader. She lived most of her life in a small town in Alabama, and I remember as a child hearing her say that, although she might not ever have to means or the opportunity to do much traveling, she planned to expand her horizons through reading. To honor her work as a volunteer as the church librarian for decades, the library was dedicated to her and named after her a few years ago.
After her funeral, my family and I went back to her church where church members had prepared a fantastic meal for us. I didn’t know most of the people in the dining hall that day, but I felt a connection to them based on the mutual love and respect they all had for my grandmother and many for my dad as well. After the meal, we went upstairs to the library, and I opened several of the books on the shelves. Behind each of the front covers was a pocket holding a library card on which Grandmom had written her name on the first line as she checked each one out to read over time. Sticking out of the top of some of the books was a small piece of paper, and when I opened the books to investigate I saw that the papers were sticky notes from my dad’s office that he had given to Grandmom as part of her librarian supplies. She’d used the sticky notes as bookmarks and had noted the date on each. I love this picture because it makes me think about how supportive my dad was of the interests of his mother and of everyone else he knew and about her passion for service and for education, things that were both so exemplary of the people that they were.
During the 75 days that Dad was sick, there were parts of him that were still the same from our pre-cancer days, but other things were very changed. The help that he needed was all-encompassing, exhausting, stressful, sad, and draining, but so worthwhile; the only time while he was sick that I felt like I wasn’t free-falling was when I was right by his side. His needs and what felt like the constant activity and vigilance that were necessary were very effective at counteracting our own panic and the sadness and, truth be told, in a weird way, the reality of it all. When I was with Dad, I couldn’t worry about Christmas shopping or paying bills or much of anything else; it took 100% of my focus just to meet his needs. When there were two or more of us there with him, one person was able to be right with him, and the other person could get a little sleep, make something in the kitchen, sort the medications, make phone calls about Dad’s care, do laundry, or work on setting up something else for Dad like the ever-changing therapy schedule, a doctor’s appointment, or the rare outing in the community.
On a daily basis, Dad was battling almost constant headaches, overwhelming fatigue, loss of appetite (he said, “I’m ZERO hungry!” whenever food was offered), and a pervasive feeling of being cold (he frequently asked if the heater was broken or if someone had turned down the thermostat, even though it was set on at least 75 degrees). In typical form, though, Dad mustered his strength and pushed on, as did we.
On the Sunday before the MRI and Round 3 were scheduled, my sister arrived at my parents’ house from California. Dad had been talking about wanting to go to see a movie for a while, and so my sister and Mom called the movie theater nearby and spoke to the manager about the accessibility of the restrooms there. Like the trip to Duke, it wasn’t enough for Dad just to have access to a bathroom with a stall with grab bars; he needed constant cueing to use the walker and to guard against other obstacles like a wet floor and thus wasn’t safe unless someone could directly supervisehim at least in getting close to the toilet, from the toilet to the sink, and from the sink to the door to exit the restroom. As we had discovered on the way to North Carolina, most places don’t have single-stall type of facilities, and neither did the theater. When the situation was explained to the manager, though, he offered to supervise Dad on his trip into and out of the men’s room, and so the “Let’s Go To The Movies” Plan was put in motion.
Mom purchased tickets online to avoid a wait in the cold, and they loaded up into the car. In another example of a change in his usual personality and tendencies, though, when they pulled up in front of the theater, Dad announced that he didn’t really want to go. Concerned that he would regret his choice later, Mom and my sister tried their best to talk him into going in, but to no avail; thinking that it would lure him in, Mom even went into the theater and bought a tub of popcorn – Dad’s favorite thing about going to see a movie – and brought it back out to Dad in the car. Dad was insistent, though, and so the mission was scrubbed.
Once back at my parents’ house, the strain of the day’s events and the sadness of everything going on was evident in Dad; tears flowed as he told my sister and my mom that he didn’t think he would ever be able to do the things he wanted to do again. Like the workings of his memory and the sensation in his left arm that seemed to come and go and that we just couldn’t really predict or comprehend, Dad obviously had a lot going on emotionally. We were right there with him to support him, but he needed more. We felt like we were paddling against the tide, with no lifeguard in sight.
When my sister called to tell me about the afternoon, I put a call into the oncologist. I told him about Dad’s anxiety about the upcoming MRI scan, and he said that he would call in a prescription for an anti-anxiety medication to Walgreen’s.I asked again about an anti-depressant for Dad, and the doctor said we could discuss that at the upcoming appointment.I told him that we are all discouraged at the lack of progress. He said he had been wondering about that too and that he wasn’t sure if the Avastin needed longer to work in this case or if there was some brain damage from before or during the surgery that was either irreversible or just taking longer to heal regardless of the Avastin dosage. He said he was interested to see the results of the MRI scan, which we would go over at the appointment on Wednesday, and that he would speak to the team at Duke about the plan after that.
In the meantime, my sister had made contact with the neuropsychologist from the rehab facility, the tall runner-looking guy to whom Dad had responded so well before our trip to Duke, and the guy had agreed to work Dad in for an appointment right after the MRI scan on Tuesday. With the MRI at the hospital downtown, the appointment in another part of town, and then the candlelight service at a church near my parents’ house that evening, it would be a very full day, but we were hoping for a good result from all three.
Dad loved "The Sound of Music," and this song makes me think about how
we felt like we were climbing mountains, fording streams, and following
rainbows with all the love that we had, in search of a dream.
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.”
