Part 21 - Erring on the Side of Hope

Continued from Part 20

Part Four of Our Trip To Duke/Our Journey of Hope 

One of my all-time favorite books is Flowers for Algernon by Daniel Keyes.  In the story, the main character, Charlie Gordon, decides to participate in a research study in which he undergoes an experimental surgical procedure in an attempt to increase his IQ.  

When I first read this book in high school, I spent a lot of time thinking about the thought-processes of the characters in this book, and even then I wondered why Charlie Gordon was so eager to have the operation knowing there was such risk to it, risk of side-effects and risk of his hopes being dashed if the treatment didn't work.  I get it now, though:  He did it for the same reason we took Dad to Duke - to err on the side of hope, to leave no stone unturned.  We took Dad to Duke and were eager to sign on for him to get the Avastin because as much as we knew that the possibility of having that plan fail would be hard to live with, we knew that the result of not having a plan that we could believe in would be much more devastating.  And as much as there was now Avastin and chemo running through Dad’s veins, there was Hope running through mine for the first time in what felt like a really, really long time.

Our third night in Durham, the one after our second day of appointments for Dad at the Brain Tumor Clinic at Duke, the first night after Dad’s first dose of Chemo/Avastin, was fairly anti-climatic.  Dad didn’t get sick (sicker), he didn’t sleep much (and neither did we), but all in all, nothing big happened.  We got up and got Dad going as early as possible the next morning, which was Thanksgiving Day.  We didn’t think we would make it back in time for the extended-family turkey dinner that had been planned by my aunt and my cousin, but we hoped to make it to my parents’ house before dark so that Dad could wind down before too late in the day.

My brother-in-law took the wheel for the drive home, and Dad volunteered himself to ride jump seat, although he pointed out, “Someone in the back seat had better co-pilot!”  Dad seemed more conversational, less anxious, and – maybe this one was my imagination – more “on-task,” at least for the first part of the drive that day.  I had already begun my newest job as Microscopic Improvement Recognition Specialist, and I was on the lookout BIG TIME for any signs of Avastin "The Magic Bullet" kicking in.

As I had commented to the team at the clinic at Duke, our drive to Durham had been an education in many things, among them the inaccessibility of at least the part of the country that we had covered on our long journey that day.  Simply put, Dad needed help to make it safely into the bathroom, and he needed on-the-spot reminders to use his walker even when he was in the bathroom.  Those things are hard to arrange when a man’s Support Crew is composed of all females.  We were way too desperate and too concerned about Dad’s safety to worry about embarrassment, though, so we just did what we had to do along the way, from blocking off the men’s restroom to yelling reminders to Dad through a closed bathroom door to asking a friendly-looking stranger going into the Men’s Room to check on Dad when he went in there.  One gas station didn’t have a curb-cut (ramp), and so I just parked right on the sidewalk so Dad wouldn't stumble getting up and down the curb on his walker.  It was stressful for all of us, and all of the in-and-out’s from the car to use the “facilities” were quite time-consuming on the way to Durham.

On the return trip, though, my brother-in-law was there for guidance, and he figured out that it was much easier for Dad to use the wheelchair than the walker to get in and out of places when we stopped.  We orchestrated the routine of the wheelchair retrieval and set-up/getting Dad situated/maneuvering into the building and into the restroom in a matter of minutes, and the process went much more smoothly that way.   Riding shotgun in the front seat, Dad was in a good mood for most of the drive, talking guy-stuff, business, and sports - including the newest addition to Dad's Revised Bucket List, going to an NBA game - along the way.  

That was the Good News of the Return Trip; the Bad News was that it was Thanksgiving Day, and, at least along the route we were driving, nothing was open except for gas stations.  We were trying to keep Dad eating so that the nausea we had been warned about wouldn’t set it, and it was a difficult challenge to find something for him and for us to eat besides complete junk food that day.  About two-thirds of the way along, Dad started talking about wanting a strawberry-banana smoothie from McDonald’s.  We thought that The Golden Arches would surely be open, but when we got off the interstate and went through the drive-thru at one that had lights on inside, a recording said, “Sorry!  We’re closed!”  Dad was uncharacteristically angry; we could tell that the strain of the trip and everything else was wearing on him.  

Dad’s level of confusion and agitation seemed to be inversely proportionate to the number of miles left to go until we got him home; the closer we got to my parents’ house, the more anxious and less mentally clear he appeared.  Thinking it would encourage him, I reminded him that the rest of his family – my other sister and my brother, their spouses and my middle sister’s husband and mine, plus all six grandchildren would be at my parents’ house waiting to see Dad when we got there.  That threw him for a loop:  he said he thought that he was on the way to get chemo; he didn’t remember having gotten it the day before, and he said he wanted to get it right away so he could feel better.   At that point, he was really out of sorts; he said over and over that he just wanted to go home and have peace and quiet so he could rest and get better.  I texted my husband to try to explain; the family members that were gathered to celebrate the homecoming were very disappointed, but everyone cleared out in hopes that he could rally when he was back on his own turf.  

We were in the beginning stages of figuring out the intricacies of a new pharmacological routine; in addition to getting Avastin and CPT-11 (chemo) by IV the day before, Dad had begun to take the one-pill-per-day type of chemo as part of a 5-day per month cycle per the new protocol.  The chemo pill was relatively simple to administer as far as those things go, but there were a few important guidelines we had to adhere to like only giving it to Dad on an empty stomach, washing our hands thoroughly after touching the capsules, and not coming into contact with any of Dad’s bodily fluids while he was taking the pills, which included having to be sure the lid of the toilet was closed before the toilet was flushed each time (yet another reminder to shout to him through the closed bathroom door).  He also had a finely-tuned anti-nausea pill regiment, and that, coupled with the strict chemo rules and regulations, made me want to stay right with Dad after we got home that night.  I was so afraid that one little mistake would negate the progress we had been promised, and, after witnessing Dad struggling so much on the trip that was so very difficult on him, I wanted to do anything I could to protect him and to comfort him.  

It seemed like a lifetime had passed in between the time we had backed out of the driveway to go to Duke only 3 days before and the time we pulled into the driveway at the end of the trip.  So much had changed, not in Dad’s condition but in what we knew and in what we thought was reasonable to hope for.  It felt like our free fall was finally coming to an end because we had found a ripcord to pull so that our parachute could open.  It seemed like we could round up when we counted our blessings because we could believe that more of the good stuff was just around the corner.  It appeared reasonable to lean into the curves and just wait and watch for improvements.  As I said on the Care Page that day, “the trip was tiring but very worthwhile;” as a result of our journey, we now had something to believe in, and that seemed to be exactly the kind of medicine we all needed.

Coming soon … Part 22 – Bumps In The Road