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