Part 27 – A Few Good Days

Continued from Part 26

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.  

Up next … Part 28 - Friends

Family Connections

Family is defined in the dictionary as “a group of people related to one another by blood or marriage;” “a person or people related to one and so to be treated with a special loyalty or intimacy;” or “a group of objects united by a significant shared characteristic.”

From my current perspective, though, a more accurate description of the institution of family is a hybrid of these:  to me, family is a group of people who are connected by circumstances, cause, and choices.   The people that make up a family may or may not be related by blood or marriage, and they often play a vital role in dealing with serious illness and grief.

During the time that Dad was sick and in the months since he went on ahead, I have seen the makeup of our family change.  Actions and lack thereof have resulted in the forfeiture of the inclusion of some people whom I fully believed would have supported us in our time of need, some of whom I would have even bet the farm on because I thought they were included in the group I defined at the time as my family.  I stand corrected, though, in some cases, as well as disappointed, hurt, angry, and full of even more grief for the loss of those relationships as I thought they were.

The surprise, the transference, the thing that allows me to keep my faith in mankind, though, has been the outpouring of love and kindness from many of our friends who have become family to me.  Those who have suffered a loss and know the devastation, even those to whom we weren’t “close” in the past, as well as those who don’t know a loss like this first-hand but have made every effort just to be there and to listen - all of them have been such a comfort to us, and that is something I will never forget.  

I will forever value the lifeguards who guided and supported us, who kept us afloat, when we were thrown into the deep end when Dad was first diagnosed, as we treaded water while he was sick and in the throes of grief, and as we struggle to try to make it back to shore without being pulled under by the current.

As part of his training program for the upcoming Ironman triathlon, Dad trained with a swim team at a facility near my parents’ house.  The majority of the people on the team were years younger than he was; some were even half his age.  Like he so often did, he made an impression on these people just by being himself - genuine, dedicated, positive, and kind.  Before he got sick, Dad had mentioned to me a few times that he really liked being on this team, and he talked about how cool he thought it was that Ashley, the coach, was a gold medalist on the U.S. swim team in the 1996 Summer Olympics, which, coincidentally, Mom and Dad had gone to as spectators.  

During the time just before and after Dad’s surgery, he told me to contact Ashley to let her know why he wouldn’t be at swim practice that week.  He said he didn’t want her to think he was “slacking off” at the end of his Ironman training schedule.  After she found out what was going on, she offered to help with anything we needed, and, from that point on, she became one of Dad’s cheerleaders and a support on the sidelines to the rest of us.  She organized a schedule of meals to be provided by members of the swim team on an every-other-day basis.  She sent cards and checked in regularly to find out about Dad’s progress.  She did research to find out which Physical Therapists did aquatic therapy when I mentioned to her that he really wanted to get back into the pool as soon as possible after he finished his inpatient rehab stay.  And, when Dad was on the decline that sent him to the hospital the second and final time, she stopped by the house for a visit and ended up helping my sister get Dad up after he had fallen.  Dad admired Ashley as an athlete and as a person, and it was obvious that the feeling was mutual.  Before his diagnosis, Dad was the only one in our family who knew her, but, through her efforts and her kindness, we all came to think of her as a great support and a friend.  She and the other swim team members cared so much for Dad and were so compassionate that they continued to bring meals to the house for many weeks after Dad died, feeding both our bodies and our spirits with their kindness.

Something that was therapeutic for me during Dad’s illness was writing updates for his Care Page.  Word spread quickly about his illness, and within a couple of weeks, we had 375 “visitors” checking the Care Page for updates.  Over the 75 days of Dad’s illness, those online supporters viewed his Care Page more than 6,000 times and left over 1,000 messages for Dad and for us.  We read many of the posts and comments to Dad, and we have read and re-read them many, many times since and have found comfort in the concern, the sentiments, and the messages over the past ten months.

I saw an editorial recently in which the author said he thought it was “crass” to announce or to discuss serious illness or death through social media like Facebook.  I couldn’t disagree more!  I don’t know what I would have done without the connections and support I have gotten through Facebook over the past months.  Many people shared stories of their own losses with me and had great advice about how to get through the day, the weeks, the months of grief.  Others just checked in here and there and let me know they cared about how I was doing.  A few told me about how they loved Dad and let me know that they missed him and would always remember him, too.  Some posted thought-provoking and inspiring quotes, photos, and statements that have influenced my perspective.  And still others provided me with welcome distractions and laughs, all of which have played a valuable part in pulling me through the murkiness.

As much as I will always carry with me the pain of the loss and the suffering during this time in my life, I will forever remember and treasure the friendships and the generosity, consideration, and affection of those in what I consider to be my newly formed family.

We don't accomplish anything in this world alone ... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads from one to another that creates something.  ~ Sandra Day O'Connor

The Flag Flies

At my dad’s funeral, my mom was presented with an American flag as part of the military funeral service.  Afterwards, she said she wanted the flag to be flown somewhere that had significance to Dad and to the rest of the family.  It didn’t take long for her to think of the perfect place:  at my brother-in-law’s family’s lake house in Hague, New York.

This past week, my mom traveled with my sister’s family to that location, and now, in memory of Dad and in honor of all the memories that we have there with him, the flag flies, near the front porch of the house, nestled in the trees, overlooking Lake George, in one of Dad’s favorite places in the world.

  

This house holds many good memories for my family.  Traveling there has provided us not only with opportunities to spend time together under the same roof as an extended family but also to do some things we might not have ever had the chance to do otherwise.

 

Several years ago when we went there, we went tubing on the Hudson River.  Last summer, we attempted the Adirondack Extreme Adventure Course, a very challenging obstacle course of ropes, suspended bridges, rope swings, and ziplines, all nestled high in the trees. 

These pursuits were fun, exciting, and, most of all, full of memories for all of us.  But the things we loved the best were those we did at Lake George every time we went there.  We always boated to a tiny secluded island in the middle of the lake and cooked out.  After supper every year, Dad and anyone else who dared to join in swam to a neighboring island. 

 Dad also challenged anyone in the group to complete the 2-mile swim across the lake each year.  He looked forward to this swim all year long and was so happy to have another notch in his belt by completing it each time. 

 Dad and whoever else was up for it also ran on the trails in the area.  Dad, of course, literally left the rest of us in the dust on those runs, and loved every minute of it.

But, as much of a thrill as Dad got from his athletic pursuits at Lake George, he also thoroughly enjoyed relaxing there and several times commented that he felt it was one of the most peaceful places on Earth.

He loved hanging out down on the dock with Mom and the rest of the family, soaking up the sun and bantering with us about whether or not the water was too cold to jump in.

The very best part of our time there together, though, in my opinion, was when we were just hanging out together in the house and on the porch.  We played board games and card games, took turns cooking and serving meals, talked about memories in the past and our plans for the future, and laughed and laughed. 

 

On more than one occasion, Dad was the catalyst for the hysterics that erupted there.  His son-in-laws amused themselves every time we got together by plotting to find a time when Dad was unsuspecting to dump ice water on him; he was a good sport about it every time. 

 

Dad always liked to try to keep up with slang and colloquialisms that were being used by the younger generations; the problem with that, though, was that he often only got the expressions half-right, if even that.  Last summer, he heard us talking about the way that some words could be intentionally substituted for a not-so-appropriate phrase as a kind of decoy.  My sister gave him some examples to demonstrate the effect:  “Mother-Father!” “Shut the front door!” and “Son of a business man!”  Dad thought these were hilarious, and, in an effort to be “with it,” he said he was going to try to start using these expressions sometimes too. 

The last night we were there, Dad decided to go to bed before the rest of the adults, and, as he walked off towards the bedroom, he left us with his attempt at hipness by saying, “Mother Father – shave your legs!”

"I’ll Be in the Boat"

As anyone who ever knew him would attest, my dad was an exceptional athlete.  One of the goals he set for himself several summers was to swim across Lake George in upstate New York, a distance of about 2 miles, a swim that involved identifying a location on the shore across the lake and “siting” on that specific point while also watching out for ski boats, jet skiers, and sail boaters.


Because of the distance of the swim and the other traffic in the fairly rough water, each time Dad and any other family members or friends set out to do this swim, others of us provided a boat escort to keep the swimmers pointed in the right direction and to call the attention of other boaters to them in the water.

Dad loved doing this swim.  He liked the feeling of accomplishment and the bragging rights that came after he did it each time.  The fact that everyone else who ever completed the swim with him was half his age was icing on the cake for him.  

Following is an exchange that occurred during one of the many late night conversations that Dad wanted to have while he was sick as he mulled things over in his head:

“Girls?” Dad called out in the dark of the ICU room to be sure that my sister Jennifer and I, his Night Shift Crew that night, were listening.

“Yeah, Dad?”

“You know how I usually swim across the Lake George with Peter and Lee and Kristen while you are in the boat?”

“Yeah, Dad?”

“I’m pretty sure I may not make it across again, but I’ll be in the boat.”