Part 18 – The Long And Winding Road

Continued from Part 17

Part One of Our Trip to Duke/Our Journey Of Hope

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.  

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 knew that 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.  J is a master at coming up with conversational topics, really she is and always has been, 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??

Up Next – Part 19 – Black Badge of Courage

Part 17 - Going Home

Continued from Part 16

My middle sister spent the night with Dad at the rehab facility the night before he was to be discharged; Dad was very anxious and antsy, as he put it, "to get the show on the road."  When Mom arrived the next morning, she and my sister took turns loading the car, supervising Dad, and getting the last-minute discharge papers and instructions.  The amount of stuff that had been amassed over the 20-day stay was incredible.  Excitement (and fatigue) was in the air as they took off down the road for the 45-minute drive home.  

As I’ve mentioned, some necessary changes had been made to my parents’ house over the past month while Dad had been away.  My brother-in-law and my husband had mounted safety bars in two bathrooms and had re-arranged the furniture in the den including removing or taping down rugs for smoother transitions.  I had taped reminder notes for Dad around the house; for example, one on the door from the garage into the house said “UP with RIGHT LEG FIRST” to indicate how he should safely get up the single step into the house on the walker.  Dad pretty much barreled in; he literally couldn't wait to get settled in his favorite recliner in the den with the newspaper and a Foster’s.  

Dad had a headache pretty much all the time at this point; he would occasionally mention it, but generally he only admitted that he was in pain when he was directly asked.  He was on some pretty strong pain medication that we had been told would make him drowsy, but we noticed that it actually hyped him up most of the time, although at the same time it didn't cut through the constant exhaustion that followed him around.  

My husband, my daughters, and I drove from out of town to join my parents and my sister and her daughters before suppertime that day.  I remember thinking that everything looked so normal on the surface when we walked in the door of my parents’ house.  As I cut off the hospital bracelet still on Dad’s wrist, I held back tears of gratitude that he was home and silently made a wish that he would never have to wear one again.  

The physical therapist at the rehab center had suggested that we get a recumbent bike for Dad at home, and so we bought a slightly-used one and set it up in the dining room.  “I’m so ready to get back on the bike!” Dad said, although he begged off when we asked if he wanted to try it right then.  As I watched him give it his all to go from the den to the bedroom on his walker, it hit me that Dad might possibly never be able to go upstairs in his own house again.  That was an easy enough bargain, though, I thought, as long as he could start feeling better and get some better quality of life on the ground level.  To accommodate all of the spend-the-night guests there, we rearranged Dad’s upstairs office into a makeshift bedroom.  We moved things around just a little that day, just as our ideas for our family’s future were shifting a little at a time.  

Spaghetti was served for supper that night, but Dad said he wasn’t hungry; he ate only some of what was put in front of him and then later that night kept asking his granddaughters to please bring him “just a little piece of chocolate,” which they delighted in doing, over and over, per his request.  He was glad to have my husband join him in having a beer after supper (we allowed him two beers that day - it was a special occasion!).  Sitting at the kitchen table pouring over the discharge instructions from the rehab facility,I created a checklist listing all medicines, their dosages, and at what time each was to be taken each day, and I felt like I actually had some control over what was going on for the first time since Dad had gotten sick.   

On Saturday morning, Dad’s long-awaited reward arrived:  Foster the Cat!  Foster took a couple of laps around the house to investigate and then settled in on Dad’s lap.  He seemed to instinctively understand that he was Dad's cat, and Dad was his person.  He didn’t seem to mind the two greyhounds at all and was quite content with his new home.  Dad said, “This cat is so adorable!  He’s perfect!”  The kids picked out an orange and blue cat collar and other necessary feline supplies at the store.  When they showed Dad the collar, for some reason he thought it was a bracelet for him, and he said, “Thanks! Auburn colors!” and then proceeded to wear it for the next few days. 

On Saturday afternoon, the home health nurse came to do an assessment to determine if Dad would get therapy and/or nursing support at home.  Mom and I sat with her at the kitchen table and answered questions and filled out paperwork while my sister and the kids entertained (and supervised) Dad, who greeted the nurse when she came in but seemed either unaware or uninterested in the reason for her visit.  When she asked Dad about his pain level, and he told her, “I feel pretty good!” despite the fact that he had rated his headache pain at a 5 or 6 out of 10 since he had gotten home.  

Several times that day, Dad said he wanted to go to the bedroom and lie down.  Sleep continued to elude him, and he was constantly tired.  When he was in the den in the middle of all the action, he seemed distracted and overloaded.  “Sorry, but there are too many people in the room for me,” he said at one point.  We wanted him to be in the middle of the conversation like he typically would be, but we helped him into the bedroom for some quiet time, although at least one of us kept an eye on him all the time for safety reasons.

Dad, on his first full day home from rehab,
relaxing with Foster the Cat and Buddy the Dog
(Note the "bracelet" Dad is wearing.) 

In between the welcome-home festivities and the road trip preparations, we took turns visiting my grandmother at the nursing home.  Like we had done as much as possible since Dad had gotten sick, we reported back to him about what was going on with Grandmom.  He was very worried about his mom and was concerned that she might be upset that he hadn’t been to see her over the past month.  We assured him that she was ok and that she didn't seem to realize how much time had gone by since he was last there.  Even though my parents’ house and the nursing home were only about ten miles apart, it seemed like they were in two different worlds.  We had decided early on in Dad’s illness not to tell Grandmom about Dad’s sickness; she was very confused, and we felt that as long as we were able to continue to visit her and to make sure she was well cared for, she was better off not having to know about Dad’s health.  When I stopped by the nurses’ station at the nursing home, the staff members there were visibly shocked when I told them that Dad had cancer.  “That bald guy has cancer?” one of the nursing assistants said incredulously.  “He looks so healthy, and he’s always so energetic and cheerful!”  They promised to keep a careful watch on Grandmom and to make a note in her chart about the new chain-of-command of phone numbers should they need to call us about anything.

A birthday celebration for Mom

Sunday was Mom’s birthday; Dad had told me a few days before that he thought he remembered buying her a ring for her birthday before he got sick, but he couldn’t remember where he’d put it, if he had indeed made the purchase.  “Maybe I just dreamed that I bought it, or maybe I just meant to do it and then I ran out of time,” he said.  He told us to get money out of his wallet and buy her something on his behalf, and so we bought her a spa gift certificate from him and we celebrated the best that we could, grateful to be together as a family and happy that Dad was home.  

That afternoon and evening, armed with our Notebook filled with questions to ask at the Brain Tumor Clinic at Duke, we packed and prepared for our journey to Durham, NC.  The Notebook served as kind of a coat of armor for us; I felt a little better just carrying it around with me.  Our lists were organized by topic; we had one or more pages filled with things to find out about under the categories like “Genetic Approaches,” “Holistic Treatment Options,” “Clinical Trial Options,” “Prognostic Indicators,” and “Off-label Medication Treatments.”  Between us, we had done hundreds of hours of reading about possible treatments for this type of Brain Cancer over the past four weeks.  We were as fully invested as we could be, and this was a fight we intended to win.  I wrote on the cover of the Notebook:  Our goal is to give Dad full access to the best new treatments, in optimum combinations, as quickly as possible, to support him in quality time for as long as possible.

My middle sister, my mom, and I went to bed soon after Dad that night (clarification: he was already in bed fretting about not being able to sleep, again, and we agreed to take turns sitting up with him throughout the night).  We felt like warriors, on a quest for the best weapons we could get our hands on as we marched into battle.

Up next ... Part 18 - The Long And Winding Road

Part 16 - Holding On

Continued from Part 15

The uphill climb continued during Dad’s homestretch in rehab; he was counting down the days until he could go home, and so were we. Dad was very bored and frustrated with the therapies and the routine there.  He didn’t see the point of 99% of what was going on in the therapy sessions; he hated that he had to work on simple arm and leg exercises and even just walking with a walker, and so did we.  There was so much unfairness and turmoil, and having to swallow his pride on a daily basis was rough stuff.  When I was there to observe, I noticed that the therapists didn’t explain to Dad why they were having him work on the things that they were, things that seemed far beneath the pre-tumor person that he was.  It’s possible that he wouldn’t have paid attention or remembered or appreciated the explanations had they been forthcoming, but I thought it was a shame that they didn’t even try to make things clearer for Dad.  Dad didn’t see the point of many of the activities; he thought they were a waste of time and childish, and in many cases, I didn’t disagree.  It’s hard to be motivated when you don’t see the point, and the point is much more unclear when a person has suffered a brain injury.

Progress was slow and inconsistent.  I wanted to believe that it was because of the lack of sleep and/or the persistent headaches and pervasive fatigue that Dad suffered from; I wanted to avoid finding out otherwise, although I knew there was a possibility that something much more detrimental and sinister what would eventually be unveiled.  

The uber-early morning wake-ups by the staff continued, as did the seemingly fly-by-the-seat-of-your-pants rulings on how (or if) Dad’s crazily fluctuating blood sugar levels and the headaches should be addressed.  Several days would go by without Dad’s blood sugar level being checked at all, but then a nurse would check it and find it to be abnormally high, after which it would sometimes be treated and sometimes not.   Dad’s eating habits were erratic; he frequently requested sweets and junk food, which was very out of character for him.  We asked the nurses and doctors many times if we should limit the sugar he ate, and each time we were told not to worry about it because the out-of-control numbers were related to the mega-doses of steroids he was having to continue to take.  At best, it was frustrating; at worst, it was alarming.

On the morning that we began Dad's last week in rehab, a nursing aide helped Dad into the shower and then stepped out of the bathroom for a couple of minutes, during which time Dad got up from the shower bench and tried to use his foot to dry water on the floor with a towel, which resulted in his falling.  Luckily, Dad was unhurt, but the fall highlighted the fact that there had really been no improvement in his safety awareness since he had gotten to rehab.

After this incident, I called the rehab director to assert that Dad should not be left alone, even for a minute, and to inquire again about getting recommendations and orders for things that would be necessary after discharge, including home health equipment, a handicapped parking permit, outpatient therapies, and insulin training.   I never got a phone call from the social worker, the woman whom we had been told was our Case Manager; very obviously, the onus was on the patient’s family to figure out what needed to be worked out before the patient went home.  I thought it was absurd that I was having to make a list and chase down the support we needed on this; I shutter to think what would have happened otherwise.  Dr. Rehab informed me when I called that Family Education Day would be two days before Dad was discharged.  I told him that was going to be tough to work out for most of Dad’s family; we were all traveling from other cities and were piecing together what needed to be done in between working and taking care of what needed taking care of on our own home fronts.  There wasn’t another option available for this, though, and so I took the day off work and went to the training.  During the training, I inquired about getting an order for a wheelchair since Dad was unable to cover long-distances without totally wearing himself out.  I asked AGAIN about insulin training and seizure training, and I brought up my continued concerns about the need for emotional support.  To all of it, we were told that the recommendations would be given to us in the discharge paperwork, which we’d be given when Dad was on his way out the door.  (**Side note:  I called the oncologist and explained about the wheelchair, and one was delivered, which was nice, but it was an extra-wide!  My 5’10” 155 pound Dad did NOT need an extra-wide anything; in fact, pre-tumor Dad would have been highly insulted at the width of the wheelchair that was rented to him.  I was half-relieved and half-saddened by the fact that he didn’t notice the size of the wheelchair and that he didn’t mind that I’d insisted on getting him a wheelchair.)

Besides the tediousness of the therapies, the lack of privacy, the boredom, and the early-morning wake-ups, something else that Dad really hated at rehab involved eating.  As I posted on the Care Page during this time, “Contrary to what we usually hear about hospital food, Bill says the food at the rehab center is actually pretty good.”  What he didn’t like was having to eat in bed or sitting in a wheelchair with his plate of food on the rolling hospital table for every meal.  He still could not feel much of anything on his left side, which made the motion of plate-to-mouth difficult.  More often than not, he ended up with food spilled on the table, on the floor, on himself, or any combination of the three.  He frequently got very annoyed with himself when he spilled; we tried to clean it up quickly and convince him it wasn’t a big deal, but he was irked and dispirited nonetheless.  

Dad’s buddy the neuropsychologist came by a couple more times that last week; Dad still thought the guy was great, but the guy was getting on my nerves.  At one point, Dad wondered aloud how he had gotten brain cancer, and I heard Dr. N tell Dad that there were some studies indicated that “there could be a link to excessive cell phone usage.”  Great – let’s add Guilt to the other mess of emotions Dad is trying to cope with.  (**Side note:  His saying that would have been bad enough if it were true; it was all the worse because to date no valid studies have conclusively linked cell phone usage with brain cancer.  Jerk.)

Mom asked Dr. N what we should do about finding a neuropsychologist for follow-up after discharge, and Dr. N gave us the name of someone whom he said was a friend of his and was "very good."  Coincidentally, she was affiliated with the practice where our oncologist worked.  That sounded like a good plan, except that when I called to schedule an appointment with her, I was told that she was out on maternity leave through the end of January.  Dr. N himself saw patients on an outpatient basis, but his practice was located even further away from my parents’ house, which would’ve meant about an hour drive each way for them, which didn’t seem reasonable.  He offered no other ideas, and so I added that to my list of things to figure out after discharge.

My mom and I worked our way through a stack of paperwork that we had to FedEx to Duke, and Dad got another MRI scan which was sent to the Brain Tumor Clinic there too.  Dad had another appointment with the Radiation Oncologist; this time he got fitted for a special face-mask which he would wear to hold his head still during radiation treatments that were planned to begin soon after the Duke trip. 

The promise of a nightly Foster’s was a powerful reward for Dad; each evening he savored the beer while he made plans of what needed to happen so that he could sleep better that night (“I need total darkness in here!”  “I’m going to read for 30 minutes and then no talking!”  “I’m going to make myself stay up until 11 p.m. and then I’m going to eat some peanut butter crackers to help me sleep!”)  Every night was a hopeful strategy, none of which worked.  Like Dad, we were all just holding on until Going Home Day.

Coming up next in the Behind The Scene Story ... Part 17 - Going Home