Part 26 - Oh, $*#^&!

Continued from Part 25

On the eve of Round 2 of Chemo for Dad, I thought he would sleep that night (every night we had some kind of new Plan or at least a theory of why that night would be THE NIGHT the sleeping would return), but the routine remained the same:  awake and talking until around 3 a.m., then headache, then pain meds, then more chatting, and finally snoozing around 5 a.m.  As part of my work responsibilities, I was scheduled to go to a conference about an hour away from my parents’ house the day after the appointment at the oncologist's office.  When it was time for me to leave, I went into my parents’ bedroom and saw Dad lying in bed with his eyes open. 

“I have to leave now to make it to the conference,” I told him. Dad had always tried to instill promptness and non-absenteeism in my sisters and me; he hated to take sick days and often said that he felt that sometimes people “let themselves off the hook way too easily” when it came to calling in sick to work.  But not on this day: in a moment I will never forget, he looked up at me and said ever so sadly, “Don’t go!  Just stay here with me!” 

I don’t know exactly why remembering this scene makes me cry every time I think of it.  Maybe it’s because he was asking for something so simple, and yet I thought to myself, “He doesn’t really mean that – he expects me to show up for work like I’m supposed to and like he’s always taught me to do.”  This time, I let myself off the hook way too easily by not calling in to say I wasn’t going to work, and I will always regret doing so that day.  I told him that he was scheduled to have therapy in the morning and then could relax in the afternoon, and he said "I'm planning to sleep with Foster all day!"

“No!” I said, alarmed and thinking that he was going to start refusing to participate in his therapy sessions or, worse, stop getting out of bed for any reason.  He laughed and said he was just kidding, and, with that, I hit the road.  

When I got to the conference, I was distracted and worried about Dad and Mom; I was definitely not the most attentive learner there that day.  In the middle of one of the sessions I was attending, I realized that we’d never gotten an answer from the nurse practitioner the day before about adjusting the steroid doseage, and so I stepped out of the meeting and put a call in to the oncologist’s office for clarification.  With my hand on my cell phone the whole time as I waited for a call back, I went to a few more sessions.  Finally, as the conference was winding up that day, my phone vibrated and I sprinted into the hallway to take the call.  Nurse practitioner said they wanted to keep Dad on the same dosage for now and would re-evaluate after the MRI scan in two more weeks.  

Fueled by frustration and concern, I left the conference center and drove back to Mom and Dad’s.  Dad was in the middle of a late-afternoon physical therapy session; they were working on figuring out the best way for him to get from the floor onto the couch, presumably in case he fell at some point.  Just like I had been at the conference, Dad was far from being fully invested; he was putting in some effort but obviously just wanted the session to end.   Like the majority of the therapy sessions he went through while he was sick, he tried his best and was a good sport, but he didn’t see the point of it and just wanted to get through it, so very unlike his pre-cancer workout tendencies.  After P.T. was over, Mom left to go run some errands, and Dad talked me into taking him to Sonic for a large Diet Coke.  As I drove along the winding two-lane road on our mission, I had the opportunity for “good memory hoarding” - Here’s that story, as I told it many months ago ... HOARDING MEMORIES

Large Diet Coke in hand, we made it home and sat at the kitchen table talking for awhile.  On a whim, I told Dad that I wanted to check something out:  I used the newspaper as a shield so that he couldn’t see his own arm, and then I tapped various locations on his arm and asked him to tell me when he felt me touching him.  Since before the surgery, Dad had not been able to discern when his left arm or hand was being touched; sometimes when he looked at it, he didn’t even think it was his.  But there at the kitchen table, as he casually sipped his Diet Coke, he was 100% accurate at indicating touch.  I was elated!  As soon as Mom got home, I showed her what he was able to do.  When we saw that he was able to do the same thing again and again, the two of us were cheering and almost crying we were so excited.

After several minutes of listening to us carry on, Dad said flatly, “I don’t see what the big deal is!”  I explained to him that this was a provable measure of improvement, a sign that the treatment was working.  “It’s a victory, a small one, but still a win,” I told him, “like winning your heat to qualify for the final in a track meet.”

“Well,” he said, without even a hint of the thrill we were experiencing, “I’ll wait to be excited when I can do everything I used to be able to do with this arm.”  Evidently, I would have to continue waiting for more evidence in my role as Microscopic Improvement Recognition Specialist.

Dad didn’t want to talk about minor improvements. He didn’t want food or visitors or phone calls or TV.  Except for those few minutes in our car ride that day, he didn’t want to listen to music, something else very unlike his pre-tumor self.  What he wanted, simply, was to sleep at night – and we were hanging our hats on the hope that would improve once the steroid dose was decreased - and to be able to poop.

That wasn’t what was going to get him better, obviously, but it was a big deal, something that interfered with his comfort and his routine on a daily basis while he was sick.  One of the side effects of several of the medicines that Dad was on was chronic constipation.  Dad contended that the bigger reason for his pressing issues, pun intended, was the lack of exercise that he was able to do.  He told every medical professional he saw – and a few other people as well, including woman who cleaned his room in the hospital when he first got sick, that he needed to take laxatives because if he couldn’t run, he wouldn’t be able “to go to the BATHROOM bathroom.”  

One of the side effects of another of the drugs he was taking, one of the two types of chemo on the protocol from the clinical trial, was diarrhea; in fact, we had been told by our first Chemo Nurse that it was so common with this medication, which was called Irinotecan, that oncology-staff members often referred to it as “I Run To The Can.”  

But Dad didn’t.  The chemo did its thing and then the appetite went.  Nothing was going in, so nothing was going out.  It became a weird, frequent conversation in our family.  We did what we could to increase his fiber and his fluid intake, but, for the most part, it was just one of the ongoing problems for which there was no viable solution, another point of suffering just to get through, something else to look forward to not having to deal with when the minor improvements became more, when my job as Microscopic Improvement Recognition Specialist finally paid off, as I fully expected it to do.  And so, as we had been, we settled in the best we could and we waited.

Coming soon ... Part 27 - A Few Good Days