Monday, May 16, 2016

Chapter Five, Part 1: The Long and Winding Road

As was the pattern, sleep did not come easy for Dad the night before we left to go to Duke; Mom started out the night lying in the bed with him while my middle sister J and I slept in the guest room upstairs.  

Around 3 a.m., Mom shouted up the stairs that she needed help, and we came running.  Under Mom’s supervision, Dad had gotten up to go into the bathroom using his walker.  When they returned to the bedroom, he backed up to the bed so he could sit down and then stretch out.  Unfortunately, though, he misjudged the distance to the bed, and he ended up on the floor.  He wasn’t hurt, but he was angry and frustrated that he couldn’t get himself up.  Mom tried to help him but couldn’t get him up.  Without saying a word, J and I each got on one side of him and put our arms under his elbows to try to raise him up, but he just couldn’t get his legs under him even with our support.  Finally, I told him to scoot around so that he was half-kneeling, facing the bed, and to push up on the bed with his arms as we pushed him from behind.  It took a minute and some effort on all of our parts, but with that leverage he eventually got himself back onto the bed, albeit in a heave-ho kind of way.  Fortunately, there were no injuries, except to Dad’s pride.  After that, J volunteered to keep Dad company, and Mom and I went upstairs to get a couple of hours of sleep before we had to hit the road. 

That morning, we hurriedly finished packing the car and got ourselves and Dad ready.  Pulling out of the driveway, part of me felt like a character from National Lampoon’s Family Vacation, and the other part felt like a soldier going off to battle.  We’d taken countless Road Trips over the years as a family, but this was different - we were on a Mission.  Our plan was to cover the distance – roughly 500 miles – during the day so that we could get to Durham before dark, get a good night’s sleep (ha!), and be ready for the first of our two days of clinic appointments at Duke.  Following our mid-morning appointment on Tuesday, we had the first appointment of the day on Wednesday, and we hoped that we would finish in time to make it all the way back to my parents’ house that night so that we’d be back at my parents’ house for Thanksgiving Day.

I volunteered to be the Driver, and J served as the Co-Pilot and one-person Entertainment Committee.  Mom kept Dad company in the back seat, and behind them the back of the SUV was filled with suitcases and other necessary gear, including Dad’s wheelchair and his walker.  We’d considered bringing Dad’s portable DVD player along but had decided against it since Dad had yet to watch more than a few minutes of a TV show at a time since he’d gotten sick.  We rolled along for about two hours and then it started, the “How much further?” questioning from Dad. The irony of the role reversal linking the situation to the many times in my childhood in which I had asked the same question from the backseat did not escape me. 

When I think back about how difficult and miserable it must have been for Dad to go on that trip, I just want to cry, out of sadness for him and out of gratitude that he never once even considered saying that he didn’t want to go.  We had told him about the clinical trial and about Avastin; he couldn’t remember the name of the medicine or even where we were going to get it most of the time, but he knewthat he had to keep his eye on the ball, to “tough it out,” as he put it. Dad didn’t believe in Quick Fixes or Get Rich Quick Schemes; he was from the "No pain, no gain" school of thinking and he often said, “If it sounds too good to be true, it almost always is.”  But when we told him that there was a drug that was considered cutting-edge and “the drug to get” to treat his type of cancer, he was ready to go all in because he trusted us and because there didn’t really seem to be any other options, at least none that any of us wanted to take.

Even though Dad consistently rated his pain level as a 5 or 6 on a scale of 10, there was no doubt that he was in pain, and, from my perspective now, I see clearly that it was emotional pain as well physical.  I don't think anyone can truly understand just how terrifying and exhausting it must it be to not clearly understand where one is going, how long it's going to take to get there, or what the purpose of the trip is.  Dad hung in there, but it was obviously very hard and stressful for him, and his pain levels reflected that.  The pain medicine didn’t seem to help very much, and so we resorted to Plan B, the art of Distraction.  Every 15 to 20 minutes, Dad asked, “How much further?”  We used his “rounding down” trick, the one he used to use when he went out the door to run or ride his bike and told Mom that he’d be back sooner than he actually intended to be, just so she wouldn’t hassle him.  And we talked, and talked, and talked.  Jennifer is a master at coming up with conversational topics, and she did a very impressive job of thinking up memories from our childhood, celebrity gossip, funny stories, and – her favorite – survey questions:  “If you could get any kind of car you wanted, regardless of cost, what would it be?”  “If you hadn’t ended up with the career you have, what else would you have chosen?”  “Name five people, living or not, that you would most like to see in concert.”  I put the petal to the metal, and she kept the conversation flowing.  

I still haven’t figured out if it was a side effect of the steroids or another medication or if it had something to do with the area of his brain that had been affected, but Dad had an absolutely unquenchable thirst, one that seemed particularly insatiable while we were on this trip.  In between the “How much further?” inquiries, he petitioned for pit stops for Diet Coke.  Actually, he threw in a wild-card request for a Foster’s beer a few times too, but we convinced him that it was better to wait until we got to the hotel for that.  Each time he got a drink, he gulped down the Diet Coke like a man in the desert, and, right on cue less than half an hour later, he announced that he had to go to the bathroom, even though he’d just said that he didn’t have to “go” when we’d stopped for the drink.  Every time he had to stop to use the facilities, we had to get the walker out of the back of the SUV, unfold it, and then walk with him to the restroom, guiding him over welcome mats and around other customers and product displays in the aisles.  Once, “necessity” forced us to stop at a pigsty of a gas station.  A couple of times Dad’s proclamation from the backseat came when there wasn’t a place with a restroom available. After a few more minutes of driving, he let us know that he meant business, and I hastily pulled over on the side of the road.  J kept him from barreling out of the vehicle while I rushed around to get his walker so he could steady himself as traffic whizzed (pun intended) by us.  

After several rounds of this, we decided to help him pace himself with the Diet Cokes; for one reason, we didn’t think it was healthy for him to ingest all that caffeine and other chemicals, and also we realized we’d be on the road much longer if we had to keep having to make so many stops.  He didn’t seem to see the correlation between drinking so much so fast, the need for so many bathroom stops, and the time that was being added to our drive.  About 6 hours into the trip that we’d estimated would take about 8 hours, he was frazzled, exhausted, uncomfortable, and anxious for the trip to end.

By the time the sun went down, we still had more than 100 miles to go.  “How much further?” came more and more often from the backseat, and I have to admit we told him “Not too much!” many, many times.  After awhile, he pressed for more information, and we starting saying, “Roughly half an hour,” which we carried on with for at least an hour.  Finally, we saw the road sign that said, “Durham – 30 miles,” but just past that was NIGHTTIME ROAD CONSTRUCTION!  We were stuck in stop-and-go traffic for another hour, not fun.  Dad was exhausted and exasperated, ready to stretch out in a bed and drink a Foster’s over ice.

As we pulled into the hotel parking lot after more than 10 hours on the road, I breathed a sigh of relief.  I was so glad we’d finally made it, but at the same time I couldn’t help but think about the uphill climb we still had ahead of us and wonder:  How much further??

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