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.”
Like other families, my family has some quirky holiday traditions. Some of them are from Christmases past, things I remember doing as a child growing up in my parents’ house, like letting our dogs, who lived outside, come into the den so they could be in the Christmas morning pictures with us, and like getting goodies in one leg of a pair of panty-hose instead of in our handmade stockings that hung over the fireplace.
In fact, one of the most vivid Christmas memories from my childhood was a tradition repeated year after year and was something that annoyed my dad greatly: my sisters and I always had a “sister sleepover” in one of our bedrooms on Christmas Eve, and every year we found a way to get up after our parents had gone to sleep so that we could check out what Santa had left for us downstairs. Every year, after our parents told us to go to sleep, we either stayed awake (feigning sleep when they checked on us before they went to bed) or we set an alarm so that after we went to sleep we could get up in the middle of the night. One year, we woke up in the wee hours and went to check out what Santa had left for us, and I discovered that I had gotten a new bicycle! Despite the freezing cold temperatures outside and the snow on the ground, I went out in my pajamas and without shoes (the pajamas were the kind with built-in feet, so I figured that was good enough!) and rode my new bike up and down the street until Dad caught me a little while later. Another year on Christmas Eve, Dad told us that if we set an alarm before we went to sleep, he would just turn it off so that we wouldn’t get up. Hmmm. We retaliated by setting TWO alarms, one on the bedside table (which he later turned off) and a second one hidden under a bed. Mission accomplished; sorry, Dad, but we were EXCITED!
Some of the holiday traditions from my childhood are continued in my family today; for example, after each present is unwrapped on Christmas morning, the wrapping paper is wadded up and thrown on the floor so that by the time all of the gifts have been unwrapped there is a mountain of paper in the room in which the kids are able to completely hide, which they do until someone counts, “1, 2, 3” and then a photo is taken as they jump up out of the pile of gift wrap. We also always give our pets Christmas presents, and we always open gifts one at a time.
A few of the things we usually do may not happen this year; we may take some time off and resume these things later, or we may just let them go. One of the things I am mostly avoiding this year is listening to Christmas music; every song reminds me of my dad and fills me with such sadness that he is not able to be here with the rest of us. Maybe next year those songs will be happy reminders for me of his beautiful singing voice and how he loved to listen to Christmas songs and hymns; we’ll have to wait and see on that one.
Thirteen years ago, my sister J had her first child, a daughter who was born too early and subsequently had to stay in the hospital in the Neonatal ICU for several weeks. During her hospital stay in a city over 100 miles from where my sister and her husband lived, my family took turns visiting, and we stayed at the Ronald McDonald House near the hospital.
Though the days while my niece was in the NICU were terrifying and exhausting, there was a happy ending: my sister got to bring her beautiful, healthy daughter home, a child who tomorrow becomes a teenager! The story actually repeated just over a year later when my sister’s second child, another daughter, was also born early, this time for different reasons than the first time. Another long hospitalization, another roller coaster ride, another extended stay at Ronald McDonald House, and – thankfully – another recovery and another beautiful, healthy baby who is growing up just fine.
Since that time, my family has been committed to supporting Ronald McDonald House Charities and its efforts to help critically ill children and their families. When my dad went on ahead and people asked us to which charity we would like donations to be sent, we knew right away what Dad wanted us to say: Ronald McDonald House Charities, an organization with a special place in all of our hearts and something that we associate with healing, good news, and new beginnings.
In thinking about the changes for my family this holiday season, we decided that we want to do something positive, something helpful and hopeful, and something to honor Dad, and so we signed up to cook and to serve Dad’s favorite meal – spaghetti, salad, and apple pie – to the children and their families at our local Ronald McDonald House on Christmas night this year. We are all looking forward to this tribute; it’s a perfect example of the way that making an effort to be helpful is often at least as helpful to oneself as it potentially is to the recipients of that effort.
Happy holidays!
To Dad, whom I know will be there in our hearts as we take part in our Christmas tribute at RMH.
With all that was going on with Dad during the first couple weeks in December, the days and the nights blurred together, but we never lost sight of the date circled in red on the calendar: the day for Dad to get Round Three of his treatment. After the debacle in the Chemo Suite during Round Two, I called and spoke to the oncologist about planning for a smoother appointment the next time around. He advised me that the date we were schedule to come in, the Wednesday before Christmas, was one of the busiest Chemo Days of the year and that, if we wanted efficiency, we should get there as soon as their doors opened. Because sleepless nights resulted in energy-sapped mornings for Dad and for us, I knew it would be a challenge to get out of the house and to the appointment that early. I didn’t want a repeat of the noisy, over-crowded Chemo Room or, even worse, the delay in even getting the drip started like last time, though, and so I agreed to the early bird time slot.
I also reminded the oncologist that the protocol from Duke called for an MRI at the one-month mark after the treatment had been started, which meant that Dad needed to get in for the scan right before or after he got Round Three. “How about the day before?” the doctor asked, and I put that on the books as well. The week before Christmas would be very busy for my family, I thought.
On one hand, I dreaded Chemo Day, but on the other hand I looked at it as something we could tick off our list on the road to getting Dad better. I looked at it like a Triple Letter Day on our Scrabble Board, a chance for us to score BIG TIME, and I was almost holding my breath in anticipation of the Big Payoff we had been promised from Avastin the Magic Bullet.
I had been making the three-hour drive between my parents house and mine about twice a week, staying one or two nights each time. As arduous as it was to get there to help with things at my parents’ house, to cover the distance in a state of constant sleep-deprivation, to try to keep up with whatever I could at home, and to carry on with my work responsibilities during this time, it was all I could do; I felt like I was free-falling whenever I wasn’t with Dad, and I felt physically ill when I didn’t know exactly what was going on at my parents’ house. It wasn’t that I thought that I needed to spend as much time as possible with Dad in case his time was limited; really, that thought didn’t enter my head because I was convinced that this difficult time period was just a bridge over troubled waters, an obstacle course through which we had to maneuver in order to get back to Real Life.
The week before Dad was scheduled for Round Three, I spent the night and most of the next day at my parents’ house. I had planned to leave there that evening so that I could get home and go to work the next day. However, when I went outside to put my suitcase in the car, I saw that a solid layer of ice had formed over the few inches of snow already covering the streets. As I defrosted my car, I reasoned that, once I got out of the neighborhood and onto streets with more traffic, the roads would have been salted and cleared by the other vehicles so I would be able to make it to the home safely.
I told Mom and Dad goodbye and slowly drove out of their neighborhood and onto the winding, two-lane road that lead to the interstate. The second street was hilly and shaded, though, and the ice was much worse. Cars in front of me were sliding and skidding, and, as I neared to the top of a big hill, I saw a fireman waving to get my attention. I rolled down my window to see what he wanted, and he told me that they were closing the road behind me because it was considered to be impassable. I eased my car forward, and my tires started spinning, preventing me from continuing up the hill. “Should I turn around and go back down the hill to get back to my parents’ neighborhood?” I asked him through the still-open window. “Can’t advise you,” he said. “Liability.” OK, then.
I did a three-point turn-about and started back down the hill, but my tires lost traction, and so I slowly pulled onto the narrow shoulder of the ditch-lined road. I asked the fireman who was still just standing there watching for help, and he said again that he was not allowed. I had a terrible sense of foreboding, or maybe just a sense of duty, and I was suddenly so desperate to get back to my parents' house. Frightened and panicky, I speed-dialed my husband and tried to explain to him what was happening. “Just put the car in low gear and go ahead slowly,” he said. With my stomach in knots, I clenched the steering wheel with both hands and eased down the hill, and, after taking almost 30 minutes to cover the two miles back to my parents’ house, I breathed a huge sigh of relief as I pulled into their driveway.
I went back inside the house and told them what had happened. “Wow! I’m glad you’re ok!” Dad said.
I felt my fear melt away, and I asked him, “Want to drink a beer with me?”
“I thought you’d never ask!” he said with a big smile.
Dad, with Mom and friends on a camping trip several years ago
My dad was always one of those people about whom it could be said didn’t meet a stranger. He honestly considered every person with whom he came into contact to be a potential friend, and he was consistently and genuinely kind in every situation. He once told me that he didn’t see why everyone didn’t make an effort just to say hello to every person with whom they crossed paths. “Even a dog knows it’s better to wag his tail to greet people he passes on the street,” he said.
During the time that Dad was sick, we received many cards, emails, Care Page messages, and phone messages of concern and love, and we appreciated all of them. On the front lines of the war we were fighting, we were frantically trying to keep our heads above water, plugging the holes in the dam for as long as we could, though, and the daily challenges and the shock with which we were have to cope were so overwhelming that it was all we could do to get it together to post on the Care Page every couple of days or so. Returning individual phone calls and emails was just too much, both because our time was spent focusing on Dad and the things that needed to be taken care of as part of taking care of him and also because it was just too much to even consider detailing the tragedy of it all out loud outside of The Bubble of our immediate family. It was just one of the cold hard facts about how it was when Dad was sick; our propensity to reach out was thwarted by the outrageousness of what was happening, but unfortunately the closing of the ranks ended up being something that we later learned had affected how Dad felt about himself and his views about the impact and the quality of his own life.
Not long after the second round of chemo, Mom got a phone call from one of Dad’s best friends from the small town in Missouri where my parents used to live. Dad’s friend said that he was going to come over to visit Dad. Other friends had offered to visit many times since Dad had gotten sick, but up until that point we had declined their offers for several reasons, most notably that we were concerned that contact with others could impact his health both physically and emotionally. We’d been warned by the oncologist about the dangers of germ exposure for a person on chemo. Another concern was that Dad’s problems with memory and reasoning would travel like wildfire through the gossip lines and reach his coworkers and his clients, which would be a source of embarrassment to him. Because of the logistics of caring for him while he was sick, Dad didn’t have a lot of privacy, and we felt strongly that we should do what little we could to protect him.
But this friend wouldn’t take no for an answer. He insisted that he just wanted to check in but assured us that he wouldn’t stay long. We were worried that Dad’s friend would not be able to hide his shock when he saw the changes that were so apparent in Dad. As much as possible, those of us who were around regularly were striving to act as if it was no big deal that Dad had to use a walker to get around the house and that he needed reminders about what day of the week it was or the fact that he wasn’t going back to work the next day.
On the day of the visit, Mom and my sister helped Dad get ready, and he was seated in his chair in the den when his friend arrived. The conversation flowed without too much of a hitch, and, after about 30 minutes, Dad got up to go to the bathroom (of course, without waiting for help). He used his walker to slowly make his way down the hallway, and his friend didn’t miss a beat; he expertly disguised the shock and sadness he must have felt to see such drastic changes in the man with whom he used to share the course of their weekly Saturday morning twenty-mile runs. When Dad resumed his position in his recliner, they visited for a while longer and then his friend said he had to go. Dad was both exuberant and exhausted afterwards; he lied down on his bed to “rest his eyes” with a big smile on his face.
Of all the memories I have from during the time surrounding Dad’s illness and subsequent death, this is one of the ones that is guaranteed to make me sad to the core every time it pops into my head:
Late one night when I was sitting up with Dad several weeks into his illness, he abruptly changed the subject from whatever we were talking about by saying “I don’t even have any friends.”
“Oh Dad, you are wrong,” I said, with tears in my eyes, “and I wish you knew just how wrong.”
With his eyes wide in amazement, he said incredulously, “I am?”
“Yes, Dad,” I told him, “I know you are usually the one who knows best about a lot of issues, but you have to believe me when I tell you that you have more friends and more people who love and respect you than anyone else I know.”
“OK, I hope you’re right, because it’s really important to have friends,” he said, and then he drifted off to sleep.
I’ll never know if he fully believed me or otherwise realized the depth of the truth to what I said that night. In something that I think we could only have seen in hindsight in our situation, I wish so much that we had encouraged any of Dad’s friends who were so inclined to visit while he was sick. Being a true friend was one of the many things at which he excelled, and he needed to know beyond a shadow of a doubt that his friends were rooting for him as he fought, that the many people who cared about him were there for him in the shade as well as in the sunshine, and that those who knew him were changed for the better for having known him.
One of my fears between the time that Dad got his second round of chemo/Avastin and the time that he was scheduled to get the next dose was about his quality of life; I wanted to try to make sure that Dad and the rest of us were at least trying to stop and smell the roses.In the short-term, Dad’s days were filled with fatigue, effort, scheduling, medications, and wishful thinking (hope?); however, I had a longer-term vision for him.I realized on some level – although, truth be told, not in the front of my walk-away-from-this-thing-unscathed thinking – that we may only have a couple of years left with Dad.In short, I knew in my heart that the days were long but the time as a whole would be short, and so we needed to appreciate all of the minutes, each and every day that we had with him, and we needed to try to help him find some purpose and some joy in the days ahead as part of loving him through it.
It was during this time that we started talking about goals for Dad outside of therapy goals, and soon we came up with the idea that a day could qualify to be considered A GOOD DAY if Dad could do at least one thing he needed to do and one he wanted to do each day. Things he needed to do were activities like eating a decent meal instead of the snacking he tended to do and doing some type of exercise and/or participating in therapy sessions. What we wanted more of for Dad was fulfillment. The hard part about that was figuring out what he wanted to do that he was still able to do at that point. We focused on small things - not necessarily things on his Revised Bucket List, because we thought he still had time to get better and then to reach for those stars on down the road – but everyday pleasures and little bites of satisfaction. Dad participated in the planning and even came up with some ideas of things in which he felt he would find some enjoyment.
Dad swimming, before his diagnosis
One of these things was to swim in a pool. Dad said that he wanted to get into a pool to see if he could still swim, a self-prescribed litmus test. “I promise I won’t try to swim laps,” he said very seriously, and he added that he was sure he’d be safe in the water if my brother-in-law and I took him “because one of you is a great swimmer and the other knows CPR, just in case.” He even went so far as to say that he wanted an outing to an indoor pool for a Christmas present. Thinking I could tie Dad’s quest for water time in with his distaste for the mundane Physical Therapy sessions, I called around looking for a therapy clinic with a pool, but I was told time and time again that Dad didn’t qualify due to ambulation limits and the possibility of seizures. So we put swimming on his wish list and planned to take him on our own when the extended family was in town around Christmastime.
Dad also expressed interest in going to a Grizzlies game. “I’ve never in my life been to an NBA game,” he said. Worrier that I am, I was very concerned about his ability to tolerate the noise level at the game and about issues of accessibility, but we figured we’d work out the details later and went ahead and bought tickets so that we could take him to a game right after Christmas.
Foster, showcasing for Dad by the fire
For Dad, some days, A Good Day ‘s “want-to-do” item was just spending time with his cat Foster, who provided a good balance of frolicking and snuggling. Thinking that perhaps Dad needed to find a new hobby to replace those that he was now unable to do, I suggested that he could start an online coaching program for novice runners, but he said, “I’m pretty sure someone’s already done that” and that was the end of that idea. His counter-offer was that he could take up photography, and we agreed to think about that in the spring. I remember thinking to myself that I couldn’t imagine Dad doing something artsy like that but then thinking that I also hadn’t envisioned him struggling to get through a 10 minute “easy level” ride on a recumbent bike before all of this either.
Other “Good Day” goals included a trip to the bookstore and going to see a movie, and we even went a little further out on the limb by discussing taking a hot air balloon ride as soon as the weather warmed up.
In a few cases, the "want-do-to" and the "need-to-do" intersected, such as taking Dad to get a pedicure at the nail salon near my parents' house. I should preface this by saying that, as a long-time long-distance runner, Dad's toenails were not what could be referred to as "normal." For as long as I can remember, they'd been discolored, misshapen, and sometimes (as any runners reading this will appreciate) even missing, from the pounding they took over the years within his running shoes. As part of trying to take care of him around the time of his surgery, Mom had taken on the mission of trying to "spruce up" Dad's feet; however, the obstacle to this was that his feet were very sensitive and he was especially protective of his toes. (Dad NEVER went barefooted; he was always concerned that he would step on something sharp or otherwise injure his feet and thus thwart his running program.) After rehab, we came up with the idea of taking Dad to get a pedicure, a soothing process that would feel good to him and help with the condition of his feet and toenails. I scoped out the nail salon in advance to make sure the chair was accessible (it was - it rotated to the side so he could back up to it using his walker and then sit down) and that the technicians were aware of his needs, including a brand-new filter being installed in the pedicure basin (compromised-immunity system awareness!). They were VERY accommodating and nice, and, of course, they took an instant liking to Dad, making that activity an easy one to cross off our to-do list on a Good Day.
One plan that Dad wanted to put in motion right away was to visit his mom at the nursing home. He was very worried about how she was doing, and so, on the Sunday after his second chemo treatment, Mom and my sister loaded Dad into the car and drove the short distance in the cold to see Grandmom, who lit up as always when she saw Dad and who didn’t seem to notice the change in his appearance, including the jagged scar on the top of his head or the wheelchair in which he was seated.
When I think back about all of the things with which Dad was struggling at the time and how he wanted so badly to check on his mom and to tell her that he loved her, it makes me so sad that something that simple was such an effort for him, but at the same time it makes me so very proud of his determination to look after his mom even when he was so sick himself. Through all of the Good Day attempts, undertakings, and dreams, I was a witness to Dad’s optimism, bravery, and drive, time and time again, and I learned that a good day was only relative, dependent not on the actual experience but on perspective.
