Monday, May 16, 2016

Chapter 6, Part 6: A Few Good Days

One of my biggest concerns 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.  

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