Dear Santa

As far back as I can remember when I was a child, my dad made a point to remind my sisters and me every year on Christmas Eve that Santa liked to have beer left out for him at some houses instead of milk.  I remember asking Dad if Santa would mind if the beer was hot by the time he got to our house and Dad said, no, any beer is good beer, even a hot one.  

Fast-forward a couple of decades later when I told my own children that Santa liked beer instead of milk.  Things went according to my plan until my older daughter was asked to write a letter to Santa as an assignment in her first grade class.  The letter started out like most of them do: "Dear Santa,  Hi! How are you?"  It was written in very neat handwriting with good spacing and sizing of the letters, and I’m sure the teacher was very impressed, until she got to the more unique part where my daughter wrote, “My mom says you like behr more than milk do you? Even hot?”

My daughter finished the letter with her list of a few things she wanted Santa to bring her that year and a “Thank you!” and then signed her name at the bottom of the page.  She added a couple of little drawings out to the side which she often did in those days; I doubt that distracted the teacher from the Mom ♥ Beer message in the body of the letter though.  The letter was mounted on a piece of construction paper and taped to the classroom wall for all to see at the PTA Open House that week.  I remember telling my dad about it on the phone the next day and hearing him laugh through the phone as if it were the world’s funniest joke.   “It’s like a treat you gave to yourself years later,” I told him, to which he laughed even harder.

The Smell of Colors

I once worked with a child who said that he could smell colors; I was intrigued by his claim and asked him to tell me more about it – how he’d first noticed it (“I just did,” he said) and what each color smelled like to him (interestingly, I thought, white smelled like flowers, whereas I thought it would smell like the “fresh cotton” scent of an air freshener).  Some of the other people who worked with this child seemed to think his behavior was bizarre, but I thought it was fascinating.

Obviously I can’t tell other people how a certain color smells, but what I can do is to describe what certain emotions sound like. 

On the first night after we’d gotten to Durham when we took my dad to the Brain Tumor Clinic at Duke, my sister Jennifer and I lied down to try to sleep on the pull-out couch in the little room that adjoined with the bedroom where my parents were. Dad, who was both exhausted and wound up from the very long, tedious drive there that day and somewhat disoriented about what was going to happen the following day, had finally gotten to sleep, and Jennifer and I had only then realized that all of the pillows and blankets were in the closet of the bedroom.  We didn’t dare go in there for fear of waking Dad up.  We lay there on the thin, spring-violated mattress with a threadbare sheet over us, without pillows for our heads, and suddenly we both started laughing.  Punch-drunk is what I guess it’s called: laughing when essentially nothing is funny - out of fatigue so thick we could hardly think – and stress and terror and so many more things that felt so much more powerful than we were at that moment in time.  We had to keep shushing each other until we finally giggled ourselves to sleep that night, with the laughter somehow helping us to steel ourselves for the next day, which was both Jennifer’s birthday and the first day Dad got chemo.

The metaphor that comes to mind most often when I think about my emotional state during the time Dad was sick is a glass that’s completely full: whenever anything additional was added to what was already in there, the overflow was out of my control, and I was completely incapable of handling it.  One of the many things that happened during those ten weeks that threatened to put me over the edge was the car trouble that mysteriously started happening just after Dad’s diagnosis.  Just days after his surgery, I remember hearing a faint buzzing noise coming from under the car hood after I'd parked and taken the key out of the ignition.  My husband checked it out and said that it seemed like the battery was still running, despite the fact that the car wasn’t.  He took it to the repair shop, but they couldn’t get the problem to reoccur while it was there.  It didn’t happen again for about a week; the next time I heard the buzzing noise, I was in the parking lot at the rehab hospital, about to go inside and take an overnight shift with Dad. 

I was torn; I needed the car because I had to drive back home to go to work the next day, but I needed to be with Dad.  In a move that seems totally uncharacteristic for me, I threw caution not just to the wind but completely into outer space and left the car – and the buzzing – in the parking lot and went into the hospital.  Since my dad’s diagnosis, my priorities had never been clearer.

The next day when I went outside to the parking lot after Mom had come back to be with Dad, I unlocked my car door and tried to start the engine.  Nothing.  The battery was obviously dead.  Luckily for me, my aunt, who was at the hospital too, offered to help; we called AAA and they sent a repair guy to check it out.  He replaced the battery, and, when the same incessant buzzing sound started up again as soon as he connected the new one, he told me to get the problem checked out to be sure it wouldn’t happen again.  I took the car straight to the dealership near the hospital, but they couldn’t find a problem; they said they’d disconnected and then reconnected the battery and the buzzing noise had stopped. 

Looking back and remembering the amount of stress I was under at the time, I’m a little surprised that I didn’t just tell the people at the dealership to keep the old car and bring out a new one for me; having to deal with car trouble on top of everything else was definitely an overflow of the stress with which I was equipped to cope.  Instead, though, I drove the three hours home and told my husband what had happened (again), and he showed me how to disconnect the battery under my hood and gave me a yellow-handled wrench to keep in the side pocket of my car door, just in case. 

Just in case was a language in which I was fluent by that time.  I’ve always felt the need to have plans and back-up plans, and, since Dad had gotten sick and had begun to need around-the-clock care, I knew that careful strategies and consideration of all the variables was essential to my entire family.  Having to tote a yellow-handled wrench around did not at all – pun intended – put a wrench in the plans we had laid.

A couple of days later I drove back to where my parents lived and parked my car in front of their house.  I heard the buzzing again after I’d turned off the engine, and I inexpertly used the wrench to disconnect the battery. I became much smoother at the process over the next couple of weeks, even performing the procedure later in snow and in the dark.  On the day when I was driving home from my parents’ house on icy roads and had to turn back due to the route being impassable, I pulled up in my parents’ driveway, stepped out of the car, and heard the buzzing again.  In the snow and ice, I hurriedly used the wrench to disconnect the battery and then closed the hood of the car and went inside, wet from the snow and shaken from the precariousness of the road conditions.  Dad, who was sitting in his red leather recliner chair in the den, looked up from reading the newspaper when I walked in and noticed the wrench that I’d forgotten to put back in the car in my hand.  When he asked and then I explained why I’d needed the tool, he laughed and said, “Well, if the whole OT thing doesn’t work out for you, I guess you could always be a mechanic.”

When Dad was in the hospital the last time and my family was having to deal with getting to and from the hospital on icy roads at all hours of the day and night, I got so adept at disconnecting and reconnecting the battery that I could do it in the hospital garage in under ten seconds each time.  I ignored the stares of the people around me in the garage and declined the help of the security guard who saw me with the yellow-handled wrench and my car hood propped open.  The battery hookup/unhook became part of my commute routine, just like defrosting the windows and driving through Sonic on the way to the hospital to get Dad a Diet Coke.

I still sometimes think about the boy who said he could identify colors by their smell, and it makes me think that maybe part of the reason I made it through the difficulty of the time when my dad was sick and since then is that I somehow recognized that, because my family is lucky, we had the sound of laughter to remind us of the love and hope and devotion we shared even through the most challenging times.

Priceless Memories

Eight years ago, my sisters, our husbands, and our children traveled from our corners of the country to meet at my grandmother's house in Alabama.  The day after we had arrived, our group of eleven piled into cars and drove across the state line to Wild Animal Safari in Pine Mountain, Georgia.

When we got there, we found out that there were 15-passenger vans available for rent to drive through the park - and the vans were zebra-striped!  We knew it would be much more fun for all of us to be together in one vehicle to travel amongst the animals who roamed free over the many acres there.  We paid the admission and the rental fee and then headed towards our Zebra Van; as we were boarding, my brother-in-law Peter walked over carrying a giant bag of animal feed.  He said it was a better deal to buy in bulk instead of purchasing individual containers of food for each of us to feed to the animals in the park.  I will never forget the look of wonder on Grandmom's face when she saw Peter carrying that huge bag; she laughed excitedly as she took her seat in the van and then said, "The animals sure are going to LOVE us!"  

Somehow it worked out so that my brother-in-law David took the wheel in the van - some of the time with my niece Daly on his lap - and with my daughter Molly in the passenger seat in front.  The rest of us sat on the bench seats in the back with our windows rolled down, ready to feed the animals as David slowly drove along the gravel road, stopping frequently as wildlife approached the van.  

There was a great variety of animals in the park, from antelopes to zebras.  We all had a blast, including and maybe especially Grandmom, who smiled ear-to-ear the whole time that we were there and laughed hysterically when a big slobbery bison leaned in through the window and tried to lick her in the face!

CLICK HERE TO PLAY VIDEO IF IT DOESN'T SHOW UP IN THE WINDOW ABOVE.

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We had such a good time there that day that a couple of years later my husband, my daughters, and I went back to the park with Grandmom.  The second time, when it was just the five of us, she was moving much more slowly than the first, and we just drove through the park in our car since we were a much smaller group.  After we had driven through the safari part of the park on our return trip, we went in the gift shop.  Grandmom, who, as I've mentioned, lived on a very tight budget, thanked us for taking her and for paying for her admission, and then she said she wanted to buy a souvenir for us to take home.  Always the practical thinker, she picked out a pair of salad tongs with a zebra carved into the handle of each one.  When she gave them to me after she had paid at the counter, I noticed the price tag said $19.99.  That was a lot of money for a person of her income to spend on a non-necessity, I knew, and she knew that I knew it.  I looked at her, thinking that I should decline the gift and try to get her to return it, but then she said, "Thinking I was going to be able to take a vacation somewhere this summer, I had some money saved. Today has been as good as any vacation, and I don't need anything else, so please accept my gift."  

The zebra salad-tongs, today

A few weeks before, Grandmom had stepped into a hole in her backyard while hanging clothes on her clothesline and had broken her leg.  My dad had tried for years to get her to let him buy her a dryer, but she insisted that it was a waste of money and she didn't need it.  After all, she said, she had raised a family and had lived without one for eighty years, and who could argue with that logic?  When she had fallen, she laid in the yard, unable to get herself to a phone, for about an hour until her next-door neighbor pulled up in his driveway and saw her.  He had called the ambulance and then my dad, and my parents had come to be with her while she was in the hospital.

When I'd called the next week to check on her, she told me that she had a walking cast on her leg and that she would appreciate some help with a couple of things so she hoped we could come to visit her soon.  Of course, I arranged to get there as soon as I could, worrying that things must really be dire if this independent woman needed help taking care of herself.  When my husband, my daughters, and I got there, though, we found out what she actually wanted help with, and it wasn't technically self-care: she wanted assistance with pulling her refrigerator out from the wall in her kitchen so she could do her scheduled quarterly cleaning behind it and with cleaning up debris that had fallen into her yard.  Other than that, she had it covered, she told us, and so we did those chores and then decided to head to the Safari Park the next day.  (Side note: Grandmom had told us to put any limbs, sticks, or leaves from her yard on the curb across the street from her house instead of in her trash can, but I had dumped a bucket of semi-wet leaves in there anyway, thinking it didn't really matter.  As we walked out to the car to leave for the park the following morning, she cooly lifted the lid of her garbage can and peered inside, and then she said, "Somebody put debris in here!"  I had to admit that I had done it, and she said, "Well, next time remember to put all of that stuff on the curb where it's supposed to go; that's what I do!"  Ouch!)

We had a lot of fun on our return trip to the park, but not nearly as much as we'd had the first time when we had gone as a big group.  I have treasured those salad tongs since that day, though, remembering fondly both of our trips there with Grandmom and remembering how she so generously spent her vacation money to buy them for us.

Several years after our second trip to the park, Grandmom had a stroke, and her physical and mental decline began.  Many, many times when we visited her after she was in the nursing home, we talked about how much fun we'd had at the Safari Park; in fact, when her condition had progressed to the point where she couldn't carry on a conversation, we often described things from the day when all 11 of us went in great detail, in an effort to help her to remember that wonderful day and to help her to focus on a much happier time.  

On the night before Grandmom died, as my mom was sitting with her holding her hand, my sister Jennifer called Mom's cell phone and asked Mom to hold the phone up to Grandmom's ear.  Although Grandmom had been unresponsive for several hours before, as Jennifer again tried to use her words to paint a picture for Grandmom of that great visit, Grandmom smiled and her breathing pattern became more relaxed, and I have no doubt that that happy memory was one of the last things on her mind as she transitioned out of this life.

"Not too many people can say they've been kissed by a bison!" Grandmom said. 

Looking Back

Sometimes I think back to the time when my dad was sick and I wonder how we made it through what we did.  Getting through those days - and the months of grief since he has gone on ahead - have definitely been the toughest thing I've ever had to do.  It's seemed insurmountable at times, and sometimes it still does.  I've learned a lot along the way about coping and perspective and life in general, though, and hopefully those lessons will continue to carry me through the rough waters of the ocean of grief in the time to come.  

When I look back now at the things I did to get through the weeks after Dad's diagnosis, some of it's a blur, but other parts are as clear as if they'd just happened yesterday.  Some of the memories bring a smile to my face; others make me feel like I've been punched in the gut or start a stream of tears that usually lasts the rest of the day.

One thing I remember is how I preferred to be asked how my dad was instead of how I was; I could give concrete information about his status and what was going on medically with him.  As far as how I was doing - what could I say?  The possible responses were just too overwhelming and confusing and sad.  If pressed, usually I just said, "I'm hanging in there," as if there were another option to that.

Another thing etched in my memory from the time after my dad's diagnosis is the amount of advice we got from so many different sources.  I guess people tend to feel compelled to offer advice to cancer patients and their families - and to those who are grieving.  We heard all kinds of advice - spiritual counsel, tips for dealing with chemo and lack of sleep, and so many more medical pointers from our well-meaning friends and some extended family members.  Most of it was welcome, though I must say that on some days I just wasn't in the mood to get that kind of input because I was too busy/too stressed/too sleep-deprived/too whatever to be receptive to much of anything.  So many times what we were being told were things that didn't apply to my dad or to his type of cancer.  Some days I just wanted to cry and others I just felt like beating someone up and cussing, but, really, with all that needed to be done and with the positive front that we were putting on for Dad's sake (and each others'), that wasn't really an option.

One thing I realized in the midst of all of the suggestions about coping with cancer - and later with grief - though, is that, even though I don’t believe that anyone else can really truly understand how I feel or what I have gone through because of the uniqueness of every situation and every relationship, the fact that other people seem to want to understand and make the effort to reach out is almost as good. 

Even having recently been in the seat of the person getting all of that advice, though, when I hear about someone who is going through something like what my family did, it's really tough for me to avoid giving out my own brand of advice.  I'm not sure why that is: it's certainly not that I think I'm an expert on cancer, or chemo, or grief, or ANYTHING; maybe it's because it's human nature to want to do SOMETHING to help in a crisis, and that seems helpful, despite the fact that I know it wasn't always to us.  Maybe because what happened to us was so devastating and awful that I want to do anything I can that might possibly somehow spare someone else from going through the same things.  

Finding positive stories about people with the same kind of cancer that my dad had helped me in the early stages of his illness; obviously, I thought that if SOMEBODY out there had outlived the prognosis of that diagnosis, that meant my Superhero Dad could, and I felt empowered by others' stories of strength and bravery.  I was trying to figure out what their SECRET to survival was so that I could replicate those conditions for my dad.  Early on, I saw this quote by one of the most highly respected neuro-oncologists in the country, Dr. Keith Black:

If you've recently learned that you have a brain tumor, keep this in mind: YOU ARE A STATISTIC OF ONE.  No two tumors are alike.  No one else shares your genetic makeup and your unique brain structure.  This doesn't mean that you have to face this journey alone.  It means that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you.

I clung to that quote like a shipwreck survivor to a piece of driftwood; besides the occasional pang of complete denial when the message of "This isn't really happening" flashed through my mind, Hope that all of the terrible statistics and the devastating prognosis wouldn't apply to my dad was all that got my family through each day.  As Dr. Henry Friedman, one of the big-time neuro-oncologists that I talked to at the Brain Tumor Center at Duke, said, "Hope provides the patient and their family the strength to continue to battle no matter how unfavorable the odds may appear to be."

From my current vantage point, I know that, in fact, you almost have to have that sense of hope as you round each corner when you have no sense of certainty about where the road will lead after such a shattering diagnosis.  Hope is really all that keeps you afloat some of the time - well, that and the love you feel for the person who is sick.

Another thing I did to buoy our Hope is to reach out for support and information through some online communities like Cancer Compass.  There I connected with some longterm GBM survivors, one with whom I emailed back and forth to get recommendations about the specific treatment protocol he was on, and the other of whom called me on the phone with words of encouragement that I later passed on to my dad and others in the family.  The second survivor, a woman about my dad's age, had been diagnosed almost 20 years before (!!!) and, although she had had to make some adjustments to her lifestyle because of some of the side effects of the treatment (mostly memory issues from the radiation to her brain), she said she was living a good life.  When she said she had taken up bird watching as a hobby to fill her days since she'd had to retire about midway through the years of on-again, off-again treatment she'd endured, and I swallowed the lump in my throat as I tried to picture my dad sitting on his back porch, watching birds all day.  We will adjust as needed, I told myself - all part of the Whatever It Takes attitude that I was so sure would carry us through.  I desperately wanted my dad to be one of the ones who made it through to the other side of the time frame we'd been given; I knew that he could be a powerful motivator and a dynamic speaker, and so I let myself dream a little that he would one day be in a position to help by telling his success story to others with such a devastating diagnosis.

I became almost consumed with statistics while my dad was sick as I worked to convince myself and other around me that Dad would beat the odds.  I knew that there were so many variables that affect "outcome" (what a harsh clinical term that is), but it seemed like Dad had most of the good ones on his side (except for excision of 95% or more of the tumor).  I guess when someone you love gets a terminal diagnosis, almost everyone grasps onto the hope that their person will be one to beat the odds.  It's what we have to do; it's human nature, I guess, to think that fighting and whatever else you've got in you will be the deciding factor instead of cold hard Fate. 

While my dad was sick, I literally couldn't sit still, whether I was physically with him or not.   The sound of silence, to me, sounded like a ticking time bomb, and the voices in my head carried on an endless litany of things To DO, things I guess I believed might help my dad, things I supposed might give me some sort of control over a situation that was spinning out of control, sometimes in slow motion but most of the time at a mindblowingly rapid rate.  During times when I had to sit still like when Dad was trying to sleep, I played Words With Friends on my phone, I wrote in the Notebook, I wrote long emails to the other "inside" family members who were also involved in Dad's care, and I updated the Care Page.  I couldn't watch TV - I was way to consumed.  I read A LOT, anything and everything I could find about GBM.  I took copious notes and made long lists of ideas and questions, mostly related to long-term survival, things that I thought we'd need to know on down the road to improve Dad's quality of life. 

One odd thing that I did at a few points during that time was laugh; it really was the embodiment of the expression, "Sometimes, you just gotta laugh."  It seemed to be so closely related to crying, which I did a lot of then too, although that was more challenging because I didn't want Dad to ever see me cry.  The hurt and the uncertainty was so present in those weeks that it seemed crazy, almost laughably out of control.  It was so tempting to start to feel unlucky, but then Dad would say or do something that would remind me of just how lucky we were in that moment, how it could always be worse, and how the only thing that we could really control at all was our perspective.

“Life is 10% what happens to you and 90% how you react to it.”  ― Charles R. Swindoll

Part 46 – Paving the Way

Continued from Part 45 

Dad and his league of protectors, November 2010

There were lots of surprises during the time that Dad was fighting cancer, from the first announcement that he was sick to the rapid downward spiral that brought hospice into the picture much sooner than I had ever thought could be possible.  But one thing that did not surprise me was the way those of us in the inner circle handled things.  Time and time again during the hardest ordeal any of us had ever gone through, we pulled together in support of not just Dad but of each other.  To be clear, though, we didn’t need a terminal illness, a phone call with terrible news, or a surgeon in the Room of Doom to remind us of how much we meant to each other; we were already very well aware of the preciousness of love and of life. 

But when I think back about the collection of things, both little and big, that my mom, my siblings, their spouses, and our children did to care for Dad during that time, it warms my heart; it reminds me of the bond that we share and the fierce love that we have for my dad and for one another. 

It stands to reason that a person’s spouse and adult children would make every effort and go to extremes in a life-threatening situation; one of the things that stands out in my mind as being exceptional though was the devotion of and the way that my husband and my brothers-in-law cared for my dad, which is something that I think exemplifies my dad’s relationship with the three of them, each of whom played a very important role in caring for my dad during the course of his ten-week long illness.

I suppose having a good relationship with the spouse of your adult child can be tricky, maybe especially between a father and his daughter’s husband.  A father is always supposed to look out for his “little girl,” and certainly Dad always did that for my sisters and me, but maybe in a less traditional way than some other fathers.  Dad wasn’t a hold-your-hand kind of guy in his parenting style; he always expected us to do the right thing, and he didn’t flatter us unless the praise was earned and well deserved.  Looking back, I see his method of “fathering” us as adults as one in which he trusted us to be able to take care of ourselves based on what we had learned while we were growing up, and that included his having confidence that all three of his daughters chose to marry good men, men with whom Dad could be friends and with whom he could share a mutual respect.

Another thing that held true for my dad was that he could always take a joke.  He wasn’t one of those people who could dish it out but couldn’t take it; in fact, he seemed to enjoy being the target of a prank or having people poke fun at him.  There are many examples in my memory bank of this, and some of these involve my husband, Nancy’s husband David, and Jennifer’s husband Peter.  One of their ongoing pranks on Dad over the years was dumping cold water on him when he was least expecting it on family vacations; there was great strategizing and even greater laughter each time they pulled this off. 

Photo 1 of 2 from Water Dump #1 (notice Peter being sneaky in the background)

Photo 2 of 2 from Water Dump #1 - Dad's response: "Man! That's cold!"

Result of Water Dump #2 (off the top of a houseboat)

Sometimes the laughter came from conversations between Dad and his sons-in-law, talks during which Dad always played the role of the dizzy-blonde.  During a family vacation about six years ago, our husbands were discussing computer programs they used in their jobs and the subject of needing support from their companies’ “I.T. guys” came up.  Dad thought they were spelling the word “it” and asked what the job description was for an “it guy.”  When they told him what “I.T.” stood for, Dad got really excited and proudly announced, “My company has an I.T. guy too!  We’ve all got ‘it’ guys!”  And of course that became one of the frequently repeated phrases during that trip and from that point forward.

Other times Dad’s own actions resulted in some friendly ridicule, and sometimes these incidents involved Dad’s fashion choices.  On at least one occasion, when Dad got ready for the day, one of us recognized that the jeans he was wearing weren’t actually his – they were my mom’s!  (We could tell because of the tapered legs of the jeans, which apparently escaped Dad’s notice when he put them on.)  When this was pointed out to Dad, he laughed at himself and said in a mock-confused sounding voice, “Huh?  Are these my pants?”  This became the standard statement in my family when someone was caught doing something scatterbrained, an expression that we use in my house to this day.  Another humorous exchange occurred at my house when Dad pointed out his new shoes to my husband; my husband took one look at Dad’s footwear and then asked, “Do they sell men’s shoes where you got those?”  It took Dad several seconds to process the fact that Kevin was implying that his new shoes looked like women’s, but once he did he couldn’t quit laughing about it; in fact, for years afterwards, Dad often asked Kevin, “What did you say about those new shoes I got that time?” and the two of them would crack up as they relived the conversation.

Sometimes Dad intended for what he did to be funny; he loved to get a laugh from others and obviously didn't mind it being at his own expense.  A few years ago during the SuperBowl, Dad evidently got bored and told Mom that he was going to take his Diet Coke and take a bubble bath.  (I'm guessing that she thought he was kidding, but he wasn't.)  When he got situated in the tub, he shouted for her to come in and take his picture so she could email to his sons-in-law, all for the sake of getting a laugh.  Here's the result:

On some occasions, Dad tried to reciprocate the pranks that were played on him, although it was a challenge because, like me, he typically had a hard time telling a joke, scheming without being detected, and executing his plan while keeping a straight face.  On one Christmas about seven years or eight years ago, Dad gave each of his three sons-in-law The Perfect Push-up (“As seen on TV!” he exclaimed when they opened their gifts.) and then sportingly challenged them to a push-up contest with the new gadget.  (I must report, to the chagrin of the three men who were roughly half Dad’s age at the time, that Dad was the champ of the Perfect Push-up Challenge that day!)

But for all the pranks and fun-poking that went on during the course of their relationships with my dad, Dad’s sons-in-law were as fiercely protective of him as we were while he was sick.  The respect and the love that they had for him were so evident and so touching, and it’s something I will never forget.   During the first few days after Dad got sick, as we waited for the green light for the surgery that would give us the diagnosis, it was mainly just my mom, my sisters, and me there in the hospital room with Dad.  On the day of the surgery, my husband drove from out-of-town to be with us as we waited while Dad was in surgery, and then he helped to hold me together when the neurosurgeon handed down the diagnosis and the prognosis.  From that point forward, my husband and my brothers-in-law became part of Dad’s league of protectors, a role in which they excelled because of their strong relationship with him from over the years.

On the night after Dad’s surgery, my mom, my sisters, and I were completely exhausted.  Kevin volunteered to take the late-night shift with Dad in the ICU.  As was par for the course, Dad slept “zero” that night.  Whether it was a tough-guy act or a state-of-mind from after the surgery that he had been dreading, Dad seemed less anxious with Kevin around that night; in fact, when Jennifer and Nancy got to the hospital in the early morning hours to relieve Kevin, Dad and Kevin had all the lights on in the room and were laughing, watching football, and discussing politics.  Not the sleepy-time setting the females in the family would have thought to provide, but just the right thing for Dad at the time, an oddly-placed sense of normalcy and some great male “binding time” (as Dad called any bonding experience while I was growing up.)

Later that day, my brother-in-law David arrived on the scene; like my husband and my other brother-in-law, David is one of the most compassionate people I know, and, also like Dad’s other two sons-in-law, he was perfect for the role that he played during Dad’s illness.  On the day after the surgery, Dad was still consumed with worry about time and somewhat disoriented about what time of day it was.  Over and over, Dad looked at the clock on the wall of his ICU room and incredulously asked if the clock was right; he just couldn’t believe how slowly time seemed to be passing. David came up with a strategy that helped Dad right away: he covered the wall clock with a shirt to cut down on Dad’s anxiety about what time it was. 

From the moment on the day after surgery that Dad was given the go-ahead to eat whatever foods he wanted, through Dad’s struggle to take in more calories despite his lack of appetite, to the last foods that Dad ever ate, his three sons-in-law were at-the-ready to get whatever Dad wanted to eat for him, at any time of the day or night.  They made countless trips around the clock to get foods Dad was specifically requesting from restaurants and the grocery store and served as short-order cooks when Dad was able to eat food at home.  They didn’t guilt or pressure Dad into eating, but the second he mentioned that he might like to have a certain food, they found a way to provide it for him, just in case.

When my brother-in-law Peter took a red-eye flight to join my sister Jennifer, my parents, and me in Durham on our second day of appointments at Duke, he served as the logistics guy, helping to get Dad ready and out the door on time so we could make it to our early-morning appointment at the clinic, figuring out that Dad was safer and more efficient using the wheelchair instead of the walker during the trip, driving all over town to find a hotel that wasn’t already booked for the night before Thanksgiving, finding a set of safety bars and borrowing tools from the hotel to install the bars on the toilet in the bathroom for Dad since the hotel was not handicap accessible, and then  driving the whole way home with Dad riding “co-pilot” that hectic Thanksgiving Day (with the two of them eating all of the gummy candy they could for entertainment along the way).  His presence was definitely calming for Dad and for us, and having him there for that part of our stressful trip was so helpful.

One of the things that Dad worried a lot about during his illness was having his face shaved.  (He wanted to have his head shaved like he usually did too, but, due to the staples and then the scar from the surgery, that wasn’t an option, and so Dad just focused on having a clean-shaven face.)  While something like that would not be of any concern at all to some men who were so sick, Dad was impeccable in his grooming; all my life, I can remember him shaving at least once per day, even on weekends.  Without a doubt, he was precise and proud – but not at all vain – about his appearance, a fact that did not change during his illness.  Many times both in the hospital and after he went home in between hospitalizations, Dad got help with his shaving routine from one of his sons-in-law because his dominant left hand still wasn’t up to par. 

At first, it seemed like having them help him might take away some of his dignity, but right away we could tell that, with the way they handled it, their support actually gave some dignity and a sense of independence and routine back to Dad.  The day before we left to go to Duke, we were all running around getting things ready for the trip.  Dad kept saying he needed to shave, and finally I asked him if it couldn’t just wait.  “I just need to shave,” he said insistently. “It just makes me feel better.  Hell, I even shave on vacation, and this certainly isn’t a vacation.”  Point taken. I didn’t trust myself with shaving him, and so Dad was so glad when David took care of it before we left on our trip, as he was when David helped him with it again in the hospital on the night before Dad came home on hospice. 

Peter, shaving Dad

My husband and my brothers-in-law were the muscle and the strategists behind the equipment and the furniture that needed to be set up or rearranged at my parents’ house during Dad’s illness.  They installed grab bars by the toilets and in the shower, moved couches and tables, and rolled up area rugs to make the environment as safe and as convenient as possible for Dad.  I will never forget the way they moved the hospital bed from the den to my parents’ bedroom and then so carefully and tenderly moved Dad so that he wouldn’t be scared or hurt.  Part of the peace and the comfort that we were able to provide for Dad once he came home was due to their presence, and, knowing the three of them so well and seeing how much they too loved Dad, none of that was a surprise.  Like my mom, my sisters, and me, they were paving the way, doing whatever it took to care for Dad, and that is something I will always treasure and value more than I can adequately express.

Up Next ... Part 47 – Rose-Colored Glasses