Part 31 - Battling

Continued from Part 30

During the 75 days that Dad was sick, there were parts of him that were still the same from our pre-cancer days, but other things were very changed.  The help that he needed was all-encompassing, exhausting, stressful, sad, and draining, but so worthwhile; the only time while he was sick that I felt like I wasn’t free-falling was when I was right by his side.  His needs and what felt like the constant activity and vigilance that were necessary were very effective at counteracting our own panic and the sadness and, truth be told, in a weird way, the reality of it all.  When I was with Dad, I couldn’t worry about Christmas shopping or paying bills or much of anything else; it took 100% of my focus just to meet his needs.  When there were two or more of us there with him, one person was able to be right with him, and the other person could get a little sleep, make something in the kitchen, sort the medications, make phone calls about Dad’s care, do laundry, or work on setting up something else for Dad like the ever-changing therapy schedule, a doctor’s appointment, or the rare outing in the community.

On a daily basis, Dad was battling almost constant headaches, overwhelming fatigue, loss of appetite (he said, “I’m ZERO hungry!” whenever food was offered), and a pervasive feeling of being cold (he frequently asked if the heater was broken or if someone had turned down the thermostat, even though it was set on at least 75 degrees).   In typical form, though, Dad mustered his strength and pushed on, as did we.

On the Sunday before the MRI and Round 3 were scheduled, my sister arrived at my parents’ house from California.  Dad had been talking about wanting to go to see a movie for a while, and so my sister and Mom called the movie theater nearby and spoke to the manager about the accessibility of the restrooms there.  Like the trip to Duke, it wasn’t enough for Dad just to have access to a bathroom with a stall with grab bars; he needed constant cueing to use the walker and to guard against other obstacles like a wet floor and thus wasn’t safe unless someone could directly supervise him at least in getting close to the toilet, from the toilet to the sink, and from the sink to the door to exit the restroom.  As we had discovered on the way to North Carolina, most places don’t have single-stall type of facilities, and neither did the theater.  When the situation was explained to the manager, though, he offered to supervise Dad on his trip into and out of the men’s room, and so the “Let’s Go To The Movies” Plan was put in motion.

Mom purchased tickets online to avoid a wait in the cold, and they loaded up into the car.  In another example of a change in his usual personality and tendencies, though, when they pulled up in front of the theater, Dad announced that he didn’t really want to go.  Concerned that he would regret his choice later, Mom and my sister tried their best to talk him into going in, but to no avail; thinking that it would lure him in, Mom even went into the theater and bought a tub of popcorn – Dad’s favorite thing about going to see a movie – and brought it back out to Dad in the car.  Dad was insistent, though, and so the mission was scrubbed.

Once back at my parents’ house, the strain of the day’s events and the sadness of everything going on was evident in Dad; tears flowed as he told my sister and my mom that he didn’t think he would ever be able to do the things he wanted to do again.  Like the workings of his memory and the sensation in his left arm that seemed to come and go and that we just couldn’t really predict or comprehend, Dad obviously had a lot going on emotionally.  We were right there with him to support him, but he needed more. We felt like we were paddling against the tide, with no lifeguard in sight.  

When my sister called to tell me about the afternoon, I put a call into the oncologist.  I told him about Dad’s anxiety about the upcoming MRI scan, and he said that he would call in a prescription for an anti-anxiety medication to Walgreen’s.  I asked again about an anti-depressant for Dad, and the doctor said we could discuss that at the upcoming appointment.  I told him that we are all discouraged at the lack of progress.  He said he had been wondering about that too and that he wasn’t sure if the Avastin needed longer to work in this case or if there was some brain damage from before or during the surgery that was either irreversible or just taking longer to heal regardless of the Avastin dosage.  He said he was interested to see the results of the MRI scan, which we would go over at the appointment on Wednesday, and that he would speak to the team at Duke about the plan after that.

In the meantime, my sister had made contact with the neuropsychologist from the rehab facility, the tall runner-looking guy to whom Dad had responded so well before our trip to Duke, and the guy had agreed to work Dad in for an appointment right after the MRI scan on Tuesday.  With the MRI at the hospital downtown, the appointment in another part of town, and then the candlelight service at a church near my parents’ house that evening, it would be a very full day, but we were hoping for a good result from all three.

                       Dad loved "The Sound of Music," and this song makes me think about how

                          we felt like we were climbing mountains, fording streams, and following

                                    rainbows with all the love that we had, in search of a dream.

Coming soon ... Part 32 - Falling

Part 23 – Waiting For The Magic

Continued from Part 22

If I had to characterize my paternal grandmother in just a few words, I would describe her as tough and fiercely independent.  Apparently, nobody gave her the memo about what the hospice nurse had said on the day after Thanksgiving, and she showcased her tenacity yet again over the weekend by starting to improve in her condition.  By the middle of the following week, she was eating, drinking, and occasionally even giving one-word answers or nodding to respond to yes or no questions she was asked.  So much for the prediction; evidently, they cannot call all of them, and we were grateful that Grandmom was able to get back into her routine at the nursing home.

As the weekend came to a close, those of us from out-of-town left in waves, until just my youngest sister N and my brother and his wife and children were left.  N had to work on Monday, and so my brother volunteered to accompany Mom and Dad to the oncologist’s office that day.  In what was surely a complete surprise to everyone in the family (heh!), I had written out a list of questions and requests to be addressed by the doctor and his staff at the appointment, especially since Dad continued to have a very sore throat and had now developed a hoarse voice and a cough in addition to the headache and fatigue that had been plaguing him.  On my list:  I felt that we needed to have a Case Manager onboard, someone to coordinate between the staff at the Brain Tumor Clinic at Duke and our local oncologist’s office.  I wanted to be sure that none of the recommendations of the Duke doctors was overlooked, including tapering the steroids, scheduling the next round of chemo/Avastin exactly two weeks from the initial dose, and scheduling an MRI one month after the Duke protocol had been started.  I wanted to be sure the payment "issue" had been resolved with regards to the Avastin (it had).  My brother took notes to the side of my list in the Notebook, Dad was given a fresh rotation of prescriptions, and the next round of appointments was set up.  

Part of the rules for during the time that Dad was taking the chemo pill was that he could not drink any alcohol for those five days per month.  In addition, the doctors at Duke had specified that he was only allowed to drink one beer per day on the other days because his liver would already be working overtime filtering out the chemo that was left in his system.  Dad, however, wanted his Foster’s.  He wanted candy too, “just a little piece of chocolate,” as he requested multiple times per day.  The candy we were fairly free with, especially considering that the scale at the oncologist’s office showed that he had lost weight since he’d left rehab, which was a common side effect of the chemo.  We had to come up with an alternate plan for the beer, though.  Dad sometimes seemed to understand why he wasn’t supposed to have it; other times he got angry about it.  At times, he forgot that he’d already had his “one for the day,” and he insisted that we get him another one.  Other times, he looked at us innocently and said, “What’s it going to hurt to have just a couple of beers?” which was a point I found it really hard to argue with.

But we didn’t want to do anything to jeopardize the magic that we were waiting for, the improvements that we had been promised were just around the corner for Dad at Duke and at the appointment with the oncologist this week.  And so … we faked him out improvised … we stocked the fridge with Non-alcoholic beer.  Dad loved feeling like he was in cahoots with one of us when whoever was playing the good guy that day told him we were sneaking him a second one for the day; he savored each sip of the amber-colored Dream in a Plastic Cup (he spilled things so often due to the poor sensation in his dominant hand that we didn’t dare give him a whole can or – even worse – a bottle to drink from!).  Despite the headache and the rest of it, he was pretty happy, and we were happy knowing that he was pretty happy as the waiting for the Magic continued.   

Up Next ... Part 24 - Things That Go “Hello?” In The Night