I Think The Myth Is A Myth

I spent a lot of time on the road during the ten weeks that my dad was sick, driving between my house and my parents' house and between my house and the hospital or the rehab center.  During much of the time, I listened to talk shows on radio stations like "NYU Docs."  Early one morning when I was on my way back home after having spent the night with my dad in the rehab center, I happened upon a talk show on the topic of the emotional aspects associated with aging.  The conversation broached the subject of terminal illness, and, before I really realized what I was doing, I had called in to the show and was on the air.  

"Stephanie from Tennessee is interested in finding out how to help her father who has recently been diagnosed with brain cancer," the host said as a way of introduction, and somehow I found myself on the air telling the short version of my dad's illness and asking for advice on how to address the emotional issues that were coming along with the changes and the challenges he was experiencing.  Right away, the host started talking about how we should be helping my dad to identify the legacy that he would be leaving behind.  As I listened to her talk, I felt a burning sensation in my gut for which I could not immediately identify the source; as the host made a few more statements and then closed the conversation, though, it hit me: she thought I was asking how to help him cope with his impending death.  I wanted to call back to tell her that my question was aimed at helping him have the best life he could, not the best death, but at that point I was crying so hard I knew my words would not be able to be understood.  I wasn't nearly ready to go to the depths of that subject yet, not for even a second, not on any level.  

Several days later I thought back to the words of the radio show host and thought that maybe I should remind my dad about some of the important things that he had done in his life so far - and also talk to him about his goals for the future related to accomplishment.  We'd had lots of conversations since he'd gotten sick about things he wanted to do (his Revised Bucket List), but maybe it was a good idea to broach the subject of what he felt he needed to get done, in whatever time he had left.

Looking back, that seems kind of ridiculous; knowing my dad as I did, I should have known that he would see that type of thinking as way too philosophical.  He was much more of the "just do it" mentality than the "talk about it/plan it out" type.  And he would probably never have been done; he would never have allowed himself to run out of items on his "to-do" list.  I can not at all picture him kicked back, thinking, "Well, I've done all that needs to be done in life; I'm just going to relax and do nothing for the rest of the time I have."  There would always have been one more challenge that he would have assigned to himself; that's just who he was.

The thing that made me remember back to that radio show and the conversations and thoughts that followed was an article that I read this week called The Myth of Finding Your Purpose.  I was expecting the article, written by a woman who had gone through cancer treatment, to be thought-provoking, and it was - just not in the way that I expected.

"Your purpose has nothing to do with what you do," the author says, and she goes on to explain that she thinks one's life purpose "is about discovering and nurturing who you truly are, to know and to love yourself at the deepest level and to guide yourself back home when you lose your way."  Reading these words, I feel that same burning sensation in my gut that I felt from the response of the talk show host on my interstate drive that day nearly three years ago. This time I can identify the source of that burning easily, though: it's anger, annoyance, and aggravation.  It's a fervent desire to dispute what she is saying, because I feel to the depth of my being that she is wrong.  She is wrong.

The purpose of life is connection; it's doing good, in whatever way and on whatever level works for each person.  It's erring on the side of kindness; it's experiencing gratitude; and it's doing what we can to leave the world a little better place when it's our time to go on ahead.  

The point she makes about the danger of only being able to feel worthy based on the feedback from others isn't new: that's called codependence.  Reading back through her article makes me want to get out my red pen and write in my own comments and corrections: for example, when she says, "When our purpose is external, we may never find it. If we tie our purpose or meaning to our vocation, goal or an activity, we're more than likely setting ourselves up for suffering down the line," I want to draw a little caret symbol in between the words "is" and "external" in the first sentence and insert the word "only," and I want to do the same thing in between the words "tie" and "our" in the second sentence and insert the words "all of."  While I'm at it, I'd like to do the same thing just before the word "goal" and squeeze in the words "or to the achievement of a specific" so that the declaration becomes "When our purpose is [only] external, we may never find it. If we tie [all of] our purpose or meaning to our vocation, [or to the achievement of a specific] goal or an activity, we're more than likely setting ourselves up for suffering down the line."  My point is this: despite the fact that people are going to disappoint us, that there will be times when we will feel that our efforts have gone unrecognized, and that sometimes we won't be able to do what we set out to do, in my opinion we need to do our best to, well, do our best to leave a positive mark - yes, an external one, because when we're gone, that's all that will be left of us.

Reading the rest of the article really only exasperates me even more.  To me, the platitudinal (not sure that's a real word, but if not it should be) bullet points about mindfulness of one's self, releasing all shame, and elevating one's own energy sound empty, or made-up, or both.  "To remember your holiness and treat yourself accordingly ... "  REALLY??  If I were buying what she's selling, I'd spend the rest of my days sipping a cold drink on a sunny beach and nothing more.  I'd be full of inter-connectness with myself, all right, but that's about it.

And to her last point: "What if your purpose is to bear witness to your suffering?"  As my dad would sometimes say in a Scooby Do voice, "HUH??" 

CLICK HERE FOR THE SOUND EFFECT I'M TALKING ABOUT!

Unlike the author of this article, I don't think that suffering is "essential;" I think it's most likely unavoidable, but those things aren't the same.  As I've said before, my family didn't need my dad to have to suffer in order to appreciate our lives or to love each other fiercely; we already had that going.  I'm not disputing her point that a person who feels fulfilled and loved is much more likely to be in a position to give back to others, but I just can't agree that a person's purpose is "about finding and nurturing yourself ... not an external ... accomplishment ... even if that ... is the most important discovery of all time."  I don't like the way she refers to some of the people she's met ("brilliant and effective activists," at that) as "messes;" my god, aren't we all in some way or another??  

As anyone who has read pretty much any of this blog or talked to me for any amount of time about perspective probably knows, I don't dispute the fact that inner peace is an important goal, one that can often be reached through having a certain perspective and by making choices about how our circumstances are viewed; I just don't think it's the most important goal in life, and I certainly don't think it's my only true life purpose.

For more food for thought, here's a video of a presentation by a speaker I think is very insightful and interesting:

Dr. Brené Brown at TEDxHouston

What I Have Come To Believe - Part 3: Fighting Cliches'

A follow-up to "What I Have Come to Believe - Part 1" and "Part 2: A Quest for Patterns and Control":

Fighting Cliches'

The words we use to talk about cancer can influence how we think about the disease - and how we think about the people who have been touched by it.  Those who survive are often called "winners" and are said to be "victorious." Those who have not survived their cancer are called "angels" and are said to be "in a better place."  Whenever I hear those descriptive terms used in that context, though, it makes me wonder if it's being implied that the opposite is true when the story has had a different ending, never a good thing in my book for a process like being diagnosed and treated for cancer, the outcome of which is frequently tied to many different variables that are often very much out of one's control.  

People talk about fighting cancer ... but the term "fighting" implies that there are winners and losers, just as surrendering sounds like giving up.   Certainly it isn't being implied that those unlucky enough to die after being diagnosed with a more aggressive type of cancer or an unfortunate side-effect like infection are losers who have given up.  

My dad was tough; he challenged himself on a daily basis in the physical realm though countless miles of running and biking on the road and grueling workouts, and he worked his whole life to better himself in any way that he could.  At no point in his life was he a loser or a quitter, and he sure as hell never surrendered, even though he was not able to survive the cancer that took his life.  From Day One of his diagnosis, he said he was ready to go back to work, and he continued to say that up until a few days before he died.  That is the opposite of surrendering, if you ask me.  

Advice that I hear being given out a lot in reference to a person who is dealing with serious illness or another extreme trial in life is "Stay strong."  I'm not even sure what that means; don't cry ... don't refuse treatment ... don't die???  And the phrase that is used a lot with intent to encourage a person with cancer - "Never, Ever Give Up", or "NEGU," as it is sometimes abbreviated - makes me wonder if those using that slogan have considered that doing so implies giving up has occurred when one cannot survive despite everyone's best efforts.  When treatment has failed and the disease is taking over, the pressure from hearing cliches like "NEGU" must be almost as unbearable as the disease can be.

Instead of "Never, Ever Give Up," what cancer and grief have taught me is to "Never say never."  More than anything else in my life, the experiences I have had since my dad got sick have shown me that there is simply no way to understand some things without having gone through them.  Lots of things that I thought I knew have fallen by the wayside over the past 2.5 years; now I either have knowledge of a different set of facts - or a different perspective - or just the understanding that there are many things I don't know at this point.

Maybe it's ok to use the term fighting when we're talking about cancer, as long as there is an awareness of the fact that sometimes FIGHTING can be doing something other than getting an aggressive treatment. Treatment and all the things that go along with it are an individual decision, one that can be made exponentially harder because of the time factor, plus the shock, entering into end-stage decisions. I think a lot of people with aggressive cancers opt to try an aggressive treatment as they attempt to figure out what their goals are (their Revised Bucket Lists) - it's like that is the Default when we are faced with the initial decision, and then, if that proves unsuccessful or unsatisfactory, they go to a more traditional treatment or to less harsh remedies or even no treatment at all.  Fighting can be seen as doing any number of things - or sometimes by doing nothing at all, depending on the situation and on one's perspective.

With an aggressive cancer like GBM, the survival statistics are horrible to look at, but people tend to hang onto the knowledge that nothing is for sure; believing that a loved one will beat the odds is not unreasonable, and in many cases Hope is one of the few things that can be controlled. Those dealing with aggressive cancer may consider treatments that have less severe side effects than chemo; they may have an "if-then" list or just an idea of "if" this happens, "then" another option will be considered or pursued.  I know all too well that when the treatment options and their pros and cons have all been laid out, what to do can be a tough, tough, thing to hammer out, but here's the bottom line: sometimes saving a life is not the same thing as extending it. 

From "http://ozbraintumour.info/"

Follow-up on Foster the Cat

One question I get asked pretty often by people who've read my family's story is this: What ever happened to Foster the cat?  

As I've mentioned, my mom is not a big fan of felines.  We had various pet cats while I was growing up and my parents had a cat named Sport who had passed away a year or so before my dad got sick, but Dad was always more the cat person between the two of them.  

I think I can speak for my mom when I say that there were no regrets about having gotten a cat for my dad after he got out of rehab; his Bucket List had been revised in such a drastic way when he got sick, and there weren't a lot of things on his list during that time that he could do because of the impairments that came from the tumor and because of the treatment he was undergoing.  Getting him a kitten was one of the few requests we could fulfill for him, and we were happy that his wish was able to be granted.  

Dad loved having Foster; in fact, he said that getting Foster was the "second best thing" that had happened to him since he'd gotten sick. ("The first best is having my kids and my grandkids around more," he said.)  He and Foster napped together and hung out together, and, when they weren't doing that, Dad enjoyed watching Foster play.

Unfortunately, though, Dad didn't get better with the treatments; in fact, he got worse, and he was only around for about six weeks after Foster joined the family.  

Mom didn't want a cat.  She had two greyhounds, one of whom was elderly and in poor health, and Foster tormented both of them.  He constantly tried to escape whenever an exterior door to the house was opened, and Mom didn't want to have to worry about him getting lost or hurt outside.  With Dad not around to take pleasure in Foster anymore, we agreed we needed to find a new home for the cat.

But this wasn't just any cat - it was Dad's cat - and, other than Dad's car, it was the first time we had to make a decision of what to do something of his - something he had loved, even if just for a short time.  Something he should still be around to love.  Ouch.

So we didn't want to let just anybody have him; ideally, we wanted him to go to a home with children to play with and to a family that would report back to us periodically about how he was doing.  I felt like it would be like losing a part of Dad if we lost track of Foster, and all of us were already battling against such sadness that I didn't want one more loss to add to the mix.

A couple of my parents' friends offered to take Foster when they heard about our situation, but neither had children and we thought Foster would be happier if he had some kids to play with.  Both of my sisters and I considered taking him, but all three of us already had two cats each and we weren't sure the younger, more energetic Foster would fit in.  

Taking a cat nap in a gift basket

Six weeks after my dad went on ahead, my siblings and I and our spouses and children all gathered again at my parents' house; because my dad had expressed his desire to be cremated and the cremation couldn't be completed before some of the family needed to leave town the month before, we had planned the memorial celebration for a few days after his death and the burial several weeks later so we could all make it back for the service.

That weekend, we talked about what would be best for Foster, and, to our delight, my brother and his wife offered to take him back with them and their two children when they returned a few days later to Philadelphia.  It seemed like the perfect solution; they already had one cat but thought she and Foster would work out any differences in time as needed.  

We were apprehensive about how Foster would behave on the plane ride, but they reported that he did fine. (Don't tell the airline, but he even got to get out of the carrier and sit in my niece's lap for awhile on the flight!)  

Since then, he has adjusted to living with them, and he and their first cat Greta have called a truce.  I know my dad would be glad that his cat has such a great life, playing with my niece and my nephew and going inside and outside as often as he wants, and we are grateful that he ended up in such a good place and that we get to hear funny Foster stories so often.  

At home with my niece, who is showing
him a photo of my parents

Part 45 – Spending Time

Continued from Part 44

As the sun came up on the first day of the year in 2011, family members filtered in to Dad’s bedside in the den of my parents’ house.  Dad alternated between dozing for short periods of time and talking to those around him in a raspy voice.  As we watched him dutifully try to swallow the pills that we gave him, we decided to start splitting them in half and then, if (when) even that became problematic for him, our back-up plan, which we ended up needing to employ only the next day, was to crush them or to ask the Hospice nurse for a liquid form of the same medicines.  Like the Hope to which we were all still so desperately clinging, we would adjust the medicines as needed as part of the Bargain, while never losing sight of our overall goal of keeping Dad as comfortable as possible.

When I think back to the scene at my parents’ house that morning, I see it in my memory like footage on a time-lapsed video:  a flurry of activity, with different family members and later the Hospice nurse coming in and out of the picture and with Dad there in the center.  After a brief and probably unnecessary discussion with my mom and my sisters, I cancelled the arrangements for the trip that Mom and I had planned to take with Dad to the Brain Tumor Clinic at Duke for a follow-up visit on January 17.  I emailed back and forth with Dad’s swim team coach and friend Ashley as she worked to put together a schedule of meals to be provided to my parents’ house several times a week by Dad’s teammates on the swim team and other friends through the first week in March.  My sisters and I wrote out a calendar showing when each of us would be there with Mom and Dad through the end of February.  We were all struggling more than I can adequately describe to process what was happening and to think about what the future would hold; the amount of time we would have together was still very much unknown, and I guess it helped us in some way to feel a tiny bit of control by having a plan of sorts, “just in case,” a phrase that we seemed to be using a lot during that time.  It was so hard to try to find the right balance of what should be done right that second and what reserves we would need at different points in the future.  As my brother Lee said in an email, “Ideally we would all take leave at our jobs and just be there [with Dad] 100 percent over the next few weeks and months.”  Even though none of what was going on was ideal, I suppose we were all still hopeful on some level that Dad would rally enough to have some quality time left, and of course we wanted to do what we could to be prepared and to be present for that, if our hopes came to fruition.

After Dad had gotten home the day before, I had updated the Care Page to let people know that he was home, and, in the morning on New Year’s Day, I updated it again.  We knew that a lot of people were wondering and worrying about Dad and about us, and we hoped that through these updates, we could inform others about the fact that we had chosen to bring him home with hospice support while making it clear that we did not want to garner sympathy.  I, in particular, didn’t think I could bear anyone else’s shock, sadness, grief, disbelief, anguish, or – what I thought would be the hardest to hear as I looked at Dad lying there in the bed – denial.  I had more than enough of those things on my own.  I felt like I was so fragile that I would absolutely fall apart (or unleash) if anyone said that they were sorry or otherwise framed our decision and Dad’s presence at home with us as a loss, even though of course we all regretted that his body could no longer withstand the treatment we had so hoped would give us a miracle.  We wanted (and needed) support and love, and thankfully that’s exactly what we got, through the many messages on the Care Page and via other sources from our extended family members, our friends, and even from people whom we didn’t know but who knew Dad.

We thought Home would be nourishing for Dad, enough at least for him to improve enough to be comfortable and settled.  As fuzzy as some of my recollections of my thought processes are from during this time, I clearly remember that we were all expecting weeks and maybe even months still with Dad and that we were hopeful (personally, I was actually expectant) that he would feel ok during the majority of this time.  My sister Jennifer, who lived the furthest away, had reservations to fly home with her husband and children in the afternoon that day, and, like the rest of us, she was painfully torn about whether she should stay by Dad’s side – which actually seemed less hopeful – or go home as planned and come back again to see him soon.  How we desperately wished that the Hospice nurse or someone else would (or could) tell us what the best thing to do was!  Instead, though, as we had been doing during the entire ten weeks that Dad had been sick, we pulled together and did what we thought should be done, with Hope and a couple of back-up plans in our back pockets.  Mainly, our Plan was to have a Plan, even though we knew revisions and adjustments would most certainly have to be made along the way.

Before she and her family left to fly home, Jennifer booked a flight to come back the following weekend.  Lee, who also lives far away, booked a flight to come for the weekend after that, and Nancy, my husband and hers, and I filled in as many of the other spots on the calendar as we could.  We made arrangements with a company that provided “sitter service” (How awful is that term?) to have a trained nursing assistant come during the other times so that there would always be a third person at the house to help Mom with Dad, plus the Hospice nurse, around the clock.  None of it was ideal, but it was the best way we could see to arrange for Dad to be at home, as he wanted and as we did too.  

Around the middle of the morning that day, I went upstairs to take a shower.  As I was getting dressed, Jennifer knocked on the bathroom door.  “Dad is eating bacon and drinking beer!” she said excitedly through the door.  With my hair still dripping wet, I hurried downstairs to see for myself, and there he was, in the den, with the head of the hospital bed cranked up, eating bacon and some of what he referred to as “fruity dessert,” which was fresh fruit that had been purchased already cut-up at the grocery store, a long-time favorite snack of his. Evidently, Dad had smelled the bacon that my brother-in-law David had been cooking in the kitchen and had requested some along with the “fruity dessert” and a Foster’s, and, of course, he had been served all three right away.  The TV was being changed back and forth between two of Dad’s standard New Year’s Day favorites, football and the parades.  I remember sitting in a chair beside his bed and consciously soaking in what was going on in the room, so happy that we had been able to bring Dad home and that we were all there together in that moment, but so sad because I couldn’t help myself from realizing the necessity of hoarding that memory in my mind for when we couldn’t be.

In the many pep-talks I had gotten from Dad before races I had run when I was growing up, he had always advised me to run an evenly paced race while still saving enough energy to “surge” before the finish.  “The race can be lost anywhere along the way,” he said every time, “but it can only be won on the last part of the course.”  I guess that morning was Dad’s surge, his way of “kicking it in” on the last part of the course for us, even though he had already put in such an outstanding, impressive effort along the way.  

“I need to close my eyes for a little rest,” he said after he ate.  Not long after that, though, he opened his eyes and motioned for me to come closer to him.  As I leaned in, with fear and confusion in his voice he asked hoarsely, “How will you know what I want to tell you when I can’t tell you anymore?”

Looking back from my vantage point now thirteen months later, I wonder if he meant what I thought he meant at the time when he said these words.  I thought he was seeking reassurance that we would be able to meet his needs if he lost his voice, and, as such, that is what I focused on when I responded to his question.

“We’ll know because we’ve been able to spend so much time with you, and we know you,” I told him.

Not completely convinced, he said, “Are you sure?” 

“Yes, Dad,” I told him.  He made a motion with his fingers by his shoulder at the edge of the sheet on the bed, and then an idea came to me about how I could prove to him that we would know what he was trying to tell us, even if he could only gesture.  “You want your covers to be pulled up, right?” I asked him.  

“Yes,” he said, and then my sisters and I demonstrated the other hand signals that we had all come to associate with what he wanted or needed over the past weeks, from touching his forehead to mean “I want a cold cloth on my head,” to tapping his mouth to mean “I want something to drink,” to making a slight “come here” gesture with his index finger to mean “I want a little piece of chocolate.”  I could see acceptance coming into his eyes, and, although I’m left to wonder if it was in regards to something much larger, at the time I took it to mean that he believed and trusted that we would continue to be able to meet his needs, and I was so grateful for that.

Over the course of the previous afternoon and during the night, we had decided to rethink our plan of having Dad’s bed in the den.  Instead of enjoying being in the center of the activities going on in the house, he seemed confused and overwhelmed, and we hoped the solution was relocating the hospital bed to my parents’ bedroom. 

Because we knew the move could potentially be stressful and could contribute even more to his level of anxiety and confusion, we asked Mom to take the four kids to run an errand to cut down on the number of people in the house so that we could keep things as quiet and serene as possible.  And then, while Dad closed his eyes again for a little while, we huddled to come up with a plan of how we could safely move Dad and the hospital bed from one room to the next.  Fortunately, the bedroom was on the same floor of the house, just around the corner from the den, but there was a short, narrow hallway that included two ninety-degree turns to navigate in between, and there was no way the hospital bed was going to fit through that opening without being disassembled.  Dad had suffered so much from being moved while he was in the hospital, and we knew that the transfer could be scary and even painful for him, and so we turned over several possible strategies before settling on what we thought was the best idea for the move.

The Hoyer lift was out; having to turn Dad back and forth in the bed to stuff the harness underneath him and well as having him dangle in the air as we cranked the lift so the apparatus’s arm would swing him outward was just too risky.  And so, we improvised:  my sisters and I pulled the sides of the sheets underneath Dad up and wrapped them around him in a swaddling fashion.  We lowered the bedrail and the adjusted the height of the hospital bed as low as possible, and then our three husbands swiftly and surely yet very gently slid/lifted Dad straight across from the bed to the couch.  My sisters and I sat on the floor next to the couch to act as “human bedrails” and to distract and comfort Dad as needed.  In a span of less than five minutes, our husbands, working in tandem while throwing out periodic reassurances like “Hang in there, Bill! We’re almost done!”, deflated the air mattress, disassembled the bed frame, moved all of the equipment from the den into the bedroom, and put everything back together, including putting on a fresh set of sheets on the newly-relocated bed.  

I left my sisters to sit with Dad and stepped into my parents’ bedroom to check things out, and I was happy to see the hospital bed all set up, right next to my parents’ king-sized bed.  With the rail lowered on one side of the hospital bed, the two beds were almost conjoined to make one giant bed.  Given the circumstances and what we thought Dad needed, I thought it looked perfect.  But next came the really tricky part: moving Dad from one room to the other.  Again, we decided to forego the equipment (the wheelchair and the lift) and to use strategy and muscle: with Dad still cocooned in the sheets and blankets and with my brother-in-laws clearing the way and providing back-up support “just in case,” my husband carefully lifted Dad from the couch, swiftly carried him down the hallway to the bedroom, and tenderly placed him on the bed so that my sisters and I could quickly cover him up to keep him from being cold.  Dad so obviously trusted his three son-in-laws so completely; he asked them once during the move, “Y’all have me, right?” but other than that he didn’t seem nervous or scared at all during the transfer, and he definitely seemed relieved to be in his own bedroom once the process was over.

Mom and the kids came back and were glad to see that the undertaking had been a success.  We set up a baby monitor in the bedroom with the receiver in the kitchen and, when Dad announced that he needed a little quiet time to rest, we left the room for a while, although I will admit that my sisters and I took turns standing right outside the bedroom so that we could listen and peek around the corner to check on him every couple of minutes.  It felt odd to leave him alone even for a minute, something that we hadn’t done since he’d gotten sick 70 days before.  The whole situation felt surreal and very dichotomous; it was so good to have him home but so overwhelming and shocking that we were where we were.  Watching him over the next couple of hours as he slept, I think part of me had already accepted that our time with him was very limited, but another part wanted (and needed) to believe that he could turn things around and hang on for much longer, although of course I didn't want him to have to if that meant more suffering for him. When I pressed for information during her visit that afternoon, the hospice nurse said that she couldn't predict how long but that she would guess it would be “in terms of weeks rather than months.”  As my mom, my sisters, and I listened to her words, our hearts were breaking.  We wanted to do whatever he needed, and yet what was so obviously happening was something none of us wanted to accept. 

Nancy was sitting in the room with Dad when he woke up, and he told her to tell me to come into the room so he could ask me something.  She did (she thought he was going to ask for medicine), and I did, and Dad asked, “Can I have a beer?”  I told him yes and that I would check the schedule to see what medicines he needed and then after that I would bring him a beer.  He seemed a little perturbed by my answer, and then he suggested not so subtly, “How about if you get the beer first and then do whatever else after that?”

I guess I hesitated for a second, and so he added for emphasis, “Don’t worry; just hurry!”

“OK, Dad,” I said, and as I left the room to get the beer, he called after me:  “Tell everybody: don’t worry, just hurry!” 

I returned as quickly as possible with the beer, and then I held the straw while he sipped it.  After a couple of minutes, he seemed to tire, and he told me to put an extra Foster’s under his bed “just in case” he needed it for later.  He said he didn’t want to have to bother anybody or to wait if he wanted it.  I told him that I liked getting things for him, and, with a half-smile on his face, he responded, “Well, then, I guess I just don’t want to have to wait.”  

Jennifer, her daughters, and her husband each spent time with Dad before they had to leave for the airport that afternoon.  Each of them had to lean in close to him so they could hear him talking with his scruffy voice.  When my nieces told him they loved him and then got up to leave the room, he put forth a visible effort to push his voice into an audible whisper as he called out that he loved them, too.  As my husband, my daughters, and I did when we had to leave the next day, they all thought they still had time to come back and spend more time with him; none of us foresaw the speed at which things would happen over the next few days.

We continued to take turns sitting with or lying in the bed beside Dad for the rest of the day, through the night, and into the next day.  He was still having intermittent pain, mostly in his head and his throat, and he was still having some anxiety, but all in all his discomfort seemed to be much better controlled than it had been in the hospital.  Dad didn’t seem distressed about his own plight; his anguish came from worrying about his family and our future.  He so obviously trusted that we would take care of him, but he also seemed to want to still be able to take care of us, too.  It was like that was the last thing on his Revised Bucket List or on his “to do” list.  

Although we gave Dad some small sips and then later squirts from syringes of water to drink, he was no longer requesting anything to eat or to drink. Little by little, we realized the truth about Nourishment, the substances necessary for growth, health, and good condition.  What he needed wasn’t food or calories – it was re-assurance, comfort, and love.

By Sunday morning, we noticed that Dad’s level of anxiety and even confusion seemed to escalate if there were more than a couple of people in the room with him at once or if he could hear any type of background noise like that from the TV or any music.  He seemed to like having someone there with him and several times patted the space in the bed beside him to indicate that he wanted one of us to lie down beside him in the bed, which we were happy to do.  The pain medicine that we had been instructed by the Hospice nurse to give him on a strict schedule “to stay ahead of the pain” allowed him to rest intermittently, but at times we could see that he was distressed, even in his sleep.  Several times while he was asleep, he called out things like, “I have to check on Mom!” and “Stanley [his younger brother] and I have to finish our homework!”  By the time I had to leave to go home with my husband and my daughters, the worrying was blurring over into his awake-time too.  It seemed like Dad was pulling out all the stops just to hang on.

Before I left, I went over the medication instructions again with my mom and Nancy, who, along with Nancy’s husband David, were staying there.  My daughters and my husband hugged and kissed him goodbye, and he in turn told them he loved them.  As they packed the car, I went into the bedroom, climbed into the hospital bed, and put my head on Dad’s chest.  He was quiet and still.  I told myself that he seemed to be resting peacefully and that that was a good thing, but I couldn’t stop the tears from coming so fast and furiously that after a couple of minutes I had move my head from his shoulder so I wouldn’t get his entire shirt wet.  I told him that I loved him, that I was so proud of him, and that I would always feel so lucky to have him for my dad, and then I kissed him and got up to walk out of the room.  Although I did not realize the quickness of the events soon to unfold, as I looked back at him, so small and so quiet in the bed, I knew in my heart that, despite his struggle to stay with us and ours to keep him with us, Dad was fading away.

Up Next … Part 46 – Paving the Way

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