Wednesday, December 21, 2011

A Heartfelt Tribute

Like other families, my family has some quirky holiday traditions.  Some of them are from Christmases past, things I remember doing as a child growing up in my parents’ house, like letting our dogs, who lived outside, come into the den so they could be in the Christmas morning pictures with us, and like getting goodies in one leg of a pair of panty-hose instead of in our handmade stockings that hung over the fireplace.

In fact, one of the most vivid Christmas memories from my childhood was a tradition repeated year after year and was something that annoyed my dad greatly:  my sisters and I always had a “sister sleepover” in one of our bedrooms on Christmas Eve, and every year we found a way to get up after our parents had gone to sleep so that we could check out what Santa had left for us downstairs.  Every year, after our parents told us to go to sleep, we either stayed awake (feigning sleep when they checked on us before they went to bed) or we set an alarm so that after we went to sleep we could get up in the middle of the night.  One year, we woke up in the wee hours and went to check out what Santa had left for us, and I discovered that I had gotten a new bicycle!  Despite the freezing cold temperatures outside and the snow on the ground, I went out in my pajamas and without shoes (the pajamas were the kind with built-in feet, so I figured that was good enough!) and rode my new bike up and down the street until Dad caught me a little while later.  Another year on Christmas Eve, Dad told us that if we set an alarm before we went to sleep, he would just turn it off so that we wouldn’t get up.  Hmmm.  We retaliated by setting TWO alarms, one on the bedside table (which he later turned off) and a second one hidden under a bed.  Mission accomplished; sorry, Dad, but we were EXCITED!

Some of the holiday traditions from my childhood are continued in my family today; for example, after each present is unwrapped on Christmas morning, the wrapping paper is wadded up and thrown on the floor so that by the time all of the gifts have been unwrapped there is a mountain of paper in the room in which the kids are able to completely hide, which they do until someone counts, “1, 2, 3” and then a photo is taken as they jump up out of the pile of gift wrap.   We also always give our pets Christmas presents, and we always open gifts one at a time.  

A few of the things we usually do may not happen this year; we may take some time off and resume these things later, or we may just let them go.  One of the things I am mostly avoiding this year is listening to Christmas music; every song reminds me of my dad and fills me with such sadness that he is not able to be here with the rest of us.  Maybe next year those songs will be happy reminders for me of his beautiful singing voice and how he loved to listen to Christmas songs and hymns; we’ll have to wait and see on that one.

Thirteen years ago, my sister J had her first child, a daughter who was born too early and subsequently had to stay in the hospital in the Neonatal ICU for several weeks.  During her hospital stay in a city over 100 miles from where my sister and her husband lived, my family took turns visiting, and we stayed at the Ronald McDonald House near the hospital.  

Though the days while my niece was in the NICU were terrifying and exhausting, there was a happy ending: my sister got to bring her beautiful, healthy daughter home, a child who tomorrow becomes a teenager!  The story actually repeated just over a year later when my sister’s second child, another daughter, was also born early, this time for different reasons than the first time.  Another long hospitalization, another roller coaster ride, another extended stay at Ronald McDonald House, and – thankfully  – another recovery and another beautiful, healthy baby who is growing up just fine. 

Since that time, my family has been committed to supporting Ronald McDonald House Charities and its efforts to help critically ill children and their families.   When my dad went on ahead and people asked us to which charity we would like donations to be sent, we knew right away what Dad wanted us to say:  Ronald McDonald House Charities, an organization with a special place in all of our hearts and something that we associate with healing, good news, and new beginnings.

In thinking about the changes for my family this holiday season, we decided that we want to do something positive, something helpful and hopeful, and something to honor Dad, and so we signed up to cook and to serve Dad’s favorite meal – spaghetti, salad, and apple pie – to the children and their families at our local Ronald McDonald House on Christmas night this year.  We are all looking forward to this tribute; it’s a perfect example of the way that making an effort to be helpful is often at least as helpful to oneself as it potentially is to the recipients of that effort.

                                Happy holidays!

To Dad, whom I know will be there in our hearts as we take part in our Christmas tribute at RMH.

Tuesday, December 20, 2011

Part 29 - A Slippery Slope

Continued from Part 28

With all that was going on with Dad during the first couple weeks in December, the days and the nights blurred together, but we never lost sight of the date circled in red on the calendar: the day for Dad to get Round Three of his treatment.  After the debacle in the Chemo Suite during Round Two, I called and spoke to the oncologist about planning for a smoother appointment the next time around.  He advised me that the date we were schedule to come in, the Wednesday before Christmas, was one of the busiest Chemo Days of the year and that, if we wanted efficiency, we should get there as soon as their doors opened.  Because sleepless nights resulted in energy-sapped mornings for Dad and for us, I knew it would be a challenge to get out of the house and to the appointment that early.  I didn’t want a repeat of the noisy, over-crowded Chemo Room or, even worse, the delay in even getting the drip started like last time, though, and so I agreed to the early bird time slot.

I also reminded the oncologist that the protocol from Duke called for an MRI at the one-month mark after the treatment had been started, which meant that Dad needed to get in for the scan right before or after he got Round Three.  “How about the day before?” the doctor asked, and I put that on the books as well.  The week before Christmas would be very busy for my family, I thought.

On one hand, I dreaded Chemo Day, but on the other hand I looked at it as something we could tick off our list on the road to getting Dad better.  I looked at it like a Triple Letter Day on our Scrabble Board, a chance for us to score BIG TIME, and I was almost holding my breath in anticipation of the Big Payoff we had been promised from Avastin the Magic Bullet.  

I had been making the three-hour drive between my parents house and mine about twice a week, staying one or two nights each time.  As arduous as it was to get there to help with things at my parents’ house, to cover the distance in a state of constant sleep-deprivation, to try to keep up with whatever I could at home, and to carry on with my work responsibilities during this time, it was all I could do; I felt like I was free-falling whenever I wasn’t with Dad, and I felt physically ill when I didn’t know exactly what was going on at my parents’ house.  It wasn’t that I thought that I needed to spend as much time as possible with Dad in case his time was limited; really, that thought didn’t enter my head because I was convinced that this difficult time period was just a bridge over troubled waters, an obstacle course through which we had to maneuver in order to get back to Real Life.  

The week before Dad was scheduled for Round Three, I spent the night and most of the next day at my parents’ house.  I had planned to leave there that evening so that I could get home and go to work the next day.  However, when I went outside to put my suitcase in the car, I saw that a solid layer of ice had formed over the few inches of snow already covering the streets.  As I defrosted my car, I reasoned that, once I got out of the neighborhood and onto streets with more traffic, the roads would have been salted and cleared by the other vehicles so I would be able to make it to the home safely.

I told Mom and Dad goodbye and slowly drove out of their neighborhood and onto the winding, two-lane road that lead to the interstate.  The second street was hilly and shaded, though, and the ice was much worse.  Cars in front of me were sliding and skidding, and, as I neared to the top of a big hill, I saw a fireman waving to get my attention.  I rolled down my window to see what he wanted, and he told me that they were closing the road behind me because it was considered to be impassable.  I eased my car forward, and my tires started spinning, preventing me from continuing up the hill.  “Should I turn around and go back down the hill to get back to my parents’ neighborhood?” I asked him through the still-open window.  “Can’t advise you,” he said. “Liability.”  OK, then.

I did a three-point turn-about and started back down the hill, but my tires lost traction, and so I slowly pulled onto the narrow shoulder of the ditch-lined road.  I asked the fireman who was still just standing there watching for help, and he said again that he was not allowed.  I had a terrible sense of foreboding, or maybe just a sense of duty, and I was suddenly so desperate to get back to my parents' house.  Frightened and panicky, I speed-dialed my husband and tried to explain to him what was happening.  “Just put the car in low gear and go ahead slowly,” he said.  With my stomach in knots, I clenched the steering wheel with both hands and eased down the hill, and, after taking almost 30 minutes to cover the two miles back to my parents’ house, I breathed a huge sigh of relief as I pulled into their driveway.

I went back inside the house and told them what had happened.  “Wow! I’m glad you’re ok!” Dad said.

I felt my fear melt away, and I asked him, “Want to drink a beer with me?” 

“I thought you’d never ask!” he said with a big smile.

Coming next ... Part 30 - Changes

Sunday, December 18, 2011

Part 28 - Friends

Continued from Part 27

Dad, with Mom and friends on a camping trip several years ago
My dad was always one of those people about whom it could be said didn’t meet a stranger.  He honestly considered every person with whom he came into contact to be a potential friend, and he was consistently and genuinely kind in every situation.  He once told me that he didn’t see why everyone didn’t make an effort just to say hello to every person with whom they crossed paths.  “Even a dog knows it’s better to wag his tail to greet people he passes on the street,” he said.  

During the time that Dad was sick, we received many cards, emails, Care Page messages, and phone messages of concern and love, and we appreciated all of them.  On the front lines of the war we were fighting, we were frantically trying to keep our heads above water, plugging the holes in the dam for as long as we could, though, and the daily challenges and the shock with which we were have to cope were so overwhelming that it was all we could do to get it together to post on the Care Page every couple of days or so.  Returning individual phone calls and emails was just too much, both because our time was spent focusing on Dad and the things that needed to be taken care of as part of taking care of him and also because it was just too much to even consider detailing the tragedy of it all out loud outside of The Bubble of our immediate family. It was just one of the cold hard facts about how it was when Dad was sick; our propensity to reach out was thwarted by the outrageousness of what was happening, but unfortunately the closing of the ranks ended up being something that we later learned had affected how Dad felt about himself and his views about the impact and the quality of his own life.

Not long after the second round of chemo, Mom got a phone call from one of Dad’s best friends from the small town in Missouri where my parents used to live.  Dad’s friend said that he was going to come over to visit Dad.  Other friends had offered to visit many times since Dad had gotten sick, but up until that point we had declined their offers for several reasons, most notably that we were concerned that contact with others could impact his health both physically and emotionally.  We’d been warned by the oncologist about the dangers of germ exposure for a person on chemo.  Another concern was that Dad’s problems with memory and reasoning would travel like wildfire through the gossip lines and reach his coworkers and his clients, which would be a source of embarrassment to him.  Because of the logistics of caring for him while he was sick, Dad didn’t have a lot of privacy, and we felt strongly that we should do what little we could to protect him.

But this friend wouldn’t take no for an answer.  He insisted that he just wanted to check in but assured us that he wouldn’t stay long.  We were worried that Dad’s friend would not be able to hide his shock when he saw the changes that were so apparent in Dad.  As much as possible, those of us who were around regularly were striving to act as if it was no big deal that Dad had to use a walker to get around the house and that he needed reminders about what day of the week it was or the fact that he wasn’t going back to work the next day.

On the day of the visit, Mom and my sister helped Dad get ready, and he was seated in his chair in the den when his friend arrived.  The conversation flowed without too much of a hitch, and, after about 30 minutes, Dad got up to go to the bathroom (of course, without waiting for help).  He used his walker to slowly make his way down the hallway, and his friend didn’t miss a beat; he expertly disguised the shock and sadness he must have felt to see such drastic changes in the man with whom he used to share the course of their weekly Saturday morning twenty-mile runs.  When Dad resumed his position in his recliner, they visited for a while longer and then his friend said he had to go.  Dad was both exuberant and exhausted afterwards; he lied down on his bed to “rest his eyes” with a big smile on his face.

Of all the memories I have from during the time surrounding Dad’s illness and subsequent death, this is one of the ones that is guaranteed to make me sad to the core every time it pops into my head:

Late one night when I was sitting up with Dad several weeks into his illness, he abruptly changed the subject from whatever we were talking about by saying “I don’t even have any friends.”  

“Oh Dad, you are wrong,” I said, with tears in my eyes, “and I wish you knew just how wrong.”

With his eyes wide in amazement, he said incredulously, “I am?” 

“Yes, Dad,” I told him, “I know you are usually the one who knows best about a lot of issues, but you have to believe me when I tell you that you have more friends and more people who love and respect you than anyone else I know.”

“OK, I hope you’re right, because it’s really important to have friends,” he said, and then he drifted off to sleep.

I’ll never know if he fully believed me or otherwise realized the depth of the truth to what I said that night.  In something that I think we could only have seen in hindsight in our situation, I wish so much that we had encouraged any of Dad’s friends who were so inclined to visit while he was sick.  Being a true friend was one of the many things at which he excelled, and he needed to know beyond a shadow of a doubt that his friends were rooting for him as he fought, that the many people who cared about him were there for him in the shade as well as in the sunshine, and that those who knew him were changed for the better for having known him.