Saturday, December 17, 2011

Part 27 – A Few Good Days

Continued from Part 26

One of my fears between the time that Dad got his second round of chemo/Avastin and the time that he was scheduled to get the next dose was about his quality of life; I wanted to try to make sure that Dad and the rest of us were at least trying to stop and smell the roses.  In the short-term, Dad’s days were filled with fatigue, effort, scheduling, medications, and wishful thinking (hope?); however, I had a longer-term vision for him.  I realized on some level – although, truth be told, not in the front of my walk-away-from-this-thing-unscathed thinking – that we may only have a couple of years left with Dad.  In short, I knew in my heart that the days were long but the time as a whole would be short, and so we needed to appreciate all of the minutes, each and every day that we had with him, and we needed to try to help him find some purpose and some joy in the days ahead as part of loving him through it.

It was during this time that we started talking about goals for Dad outside of therapy goals, and soon we came up with the idea that a day could qualify to be considered A GOOD DAY if Dad could do at least one thing he needed to do and one he wanted to do each day.  Things he needed to do were activities like eating a decent meal instead of the snacking he tended to do and doing some type of exercise and/or participating in therapy sessions.  What we wanted more of for Dad was fulfillment. The hard part about that was figuring out what he wanted to do that he was still able to do at that point.  We focused on small things - not necessarily things on his Revised Bucket List, because we thought he still had time to get better and then to reach for those stars on down the road – but everyday pleasures and little bites of satisfaction.  Dad participated in the planning and even came up with some ideas of things in which he felt he would find some enjoyment.

Dad swimming, before his diagnosis
One of these things was to swim in a pool.  Dad said that he wanted to get into a pool to see if he could still swim, a self-prescribed litmus test. “I promise I won’t try to swim laps,” he said very seriously, and he added that he was sure he’d be safe in the water if my brother-in-law and I took him “because one of you is a great swimmer and the other knows CPR, just in case.”  He even went so far as to say that he wanted an outing to an indoor pool for a Christmas present.  Thinking I could tie Dad’s quest for water time in with his distaste for the mundane Physical Therapy sessions, I called around looking for a therapy clinic with a pool, but I was told time and time again that Dad didn’t qualify due to ambulation limits and the possibility of seizures.  So we put swimming on his wish list and planned to take him on our own when the extended family was in town around Christmastime.  

Dad also expressed interest in going to a Grizzlies game.  “I’ve never in my life been to an NBA game,” he said.  Worrier that I am, I was very concerned about his ability to tolerate the noise level at the game and about issues of accessibility, but we figured we’d work out the details later and went ahead and bought tickets so that we could take him to a game right after Christmas.

Foster, showcasing for Dad by the fire
For Dad, some days, A Good Day ‘s “want-to-do” item was just spending time with his cat Foster, who provided a good balance of frolicking and snuggling.  Thinking that perhaps Dad needed to find a new hobby to replace those that he was now unable to do, I suggested that he could start an online coaching program for novice runners, but he said, “I’m pretty sure someone’s already done that” and that was the end of that idea.  His counter-offer was that he could take up photography, and we agreed to think about that in the spring.  I remember thinking to myself that I couldn’t imagine Dad doing something artsy like that but then thinking that I also hadn’t envisioned him struggling to get through a 10 minute “easy level” ride on a recumbent bike before all of this either.

Other “Good Day” goals included a trip to the bookstore and going to see a movie, and we even went a little further out on the limb by discussing taking a hot air balloon ride as soon as the weather warmed up.

In a few cases, the "want-do-to" and the "need-to-do" intersected, such as taking Dad to get a pedicure at the nail salon near my parents' house.  I should preface this by saying that, as a long-time long-distance runner, Dad's toenails were not what could be referred to as "normal."  For as long as I can remember, they'd been discolored, misshapen, and sometimes (as any runners reading this will appreciate) even missing, from the pounding they took over the years within his running shoes.  As part of trying to take care of him around the time of his surgery, Mom had taken on the mission of trying to "spruce up" Dad's feet; however, the obstacle to this was that his feet were very sensitive and he was especially protective of his toes.  (Dad NEVER went barefooted; he was always concerned that he would step on something sharp or otherwise injure his feet and thus thwart his running program.)  After rehab, we came up with the idea of taking Dad to get a pedicure, a soothing process that would feel good to him and help with the condition of his feet and toenails.  I scoped out the nail salon in advance to make sure the chair was accessible (it was - it rotated to the side so he could back up to it using his walker and then sit down) and that the technicians were aware of his needs, including a brand-new filter being installed in the pedicure basin (compromised-immunity system awareness!).  They were VERY accommodating and nice, and, of course, they took an instant liking to Dad, making that activity an easy one to cross off our to-do list on a Good Day.

One plan that Dad wanted to put in motion right away was to visit his mom at the nursing home. He was very worried about how she was doing, and so, on the Sunday after his second chemo treatment, Mom and my sister loaded Dad into the car and drove the short distance in the cold to see Grandmom, who lit up as always when she saw Dad and who didn’t seem to notice the change in his appearance, including the jagged scar on the top of his head or the wheelchair in which he was seated.

When I think back about all of the things with which Dad was struggling at the time and how he wanted so badly to check on his mom and to tell her that he loved her, it makes me so sad that something that simple was such an effort for him, but at the same time it makes me so very proud of his determination to look after his mom even when he was so sick himself.  Through all of the Good Day attempts, undertakings, and dreams, I was a witness to Dad’s optimism, bravery, and drive, time and time again, and I learned that a good day was only relative, dependent not on the actual experience but on perspective.  

Up next … Part 28 - Friends

Friday, December 16, 2011

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 

Wednesday, December 14, 2011

Part 25 - Round 2

Continued from Part 24
As indicated on the Dry Erase Board, I arrived at my parents’ house in time to accompany them to get Dad’s second round of chemo/Avastin.  I had called the oncologist’s office a few days before to request a consultation with a registered dietician with experience with cancer patients since Dad’s appetite had diminished to almost nothing, and so that was the first order of business on the day of Chemo: Round 2.  The nutritionist met us in the waiting room of the oncologist’s office, which I guess was nice because it was productive use of our time as we waited to see the doctor, but I kept hearing the sound of screeching tires in my head as every rule of confidentiality ever established in the field of medicine was broken by this open-air approach.  Dad didn’t care/didn’t notice, but Mom and I did, and we were torn between being grateful for the complimentary consultation and horrified at the dietician's lack of awareness of and regard to Dad’s right to privacy.

At one point in the conversation, she asked Dad if he was “regular.”  Unclear about her role even after an introduction and despite her name tag, Dad misinterpreted what she meant and said, “Sure!  I’m just a regular guy, nobody special.”  Mom and I exchanged a look and waited for Ms. Dietician to figure a way out of that one.  Perhaps thinking that he was kidding, she laughed and then said, “But really, how often are you able to go to the bathroom?”  Again, Dad missed the mark, and he said, “Oh I don’t know, they let me go whenever I need to, probably ten times a day or so, depending on how much Diet Coke and beer they let me drink.”  Ms. D started to tune in to the program at that point, I think, and finally she got more specific:  “How often do you have a bowel movement?”  Without missing a beat, Dad said, “Not nearly enough!  When I was running, I always went once a day, but that’s just one of those things that doesn’t come easy to me anymore.”  He didn’t realize the opaqueness of his statement, but luckily Ms. D picked up what he was putting down, and the conversation could (finally) move on.  

So, with that as the conversation opener, we got to discuss pooping right there in the waiting room.  Mom and I recapped the scene later when Dad wasn’t listening and agreed that – pun definitely intended here because sometimes you’ve just got to laughDad didn’t give a shit that we were talking in a very crowded room about something that most people would consider very personal.  Ms. D proceeded to discuss the importance of getting plenty of fiber and “healthy fluids” (“I don’t guess that includes Diet Coke and beer,” Dad grumbled).  The specifics of the type of intake was much less concerning to me at that point than the amount, or lack thereof, was.  I had counted calories for Dad and let Ms. D know that he was consuming less than 500 per day.  

With that, she ushered us into the inner office, where more patients were waiting, lining the walls in chairs and wheelchairs, waiting to be seen in the lab, and instructed Dad to get up on the scale.  Unlike the scale at Duke, this one had grab bars on either side of it, but it still required stepping up on a platform, which Dad needed help with.  He was able to balance for a split second without holding onto the rails or to me, though (Microscopic Improvement??, I wondered), and Ms. D reported that he'd had a weight-loss of seven pounds since leaving rehab, fairly dramatic in an already-thin (Dad preferred to be described as “in shape” rather than thin) person.

With no treatment room open, she loaded us up right there in the hallway with free samples of calorie boosters - Ensure Plus and Boost Plus, which she said tasted like a milkshake, and Benecalorie, a flavorless caloric-dense supplement that could be added in to any soft food.  She also recommended that he switch to whole milk and whole milk products (yogurt, cheeses, etc.), to which Dad gave Mom and me a not-so-subtle eye roll.  (All my life I remember him saying that cheese makes people fat, and evidently he had not forgotten about and did not plan to change his stance on that.)  We heard Dad’s name being called to get him into the lab, and so we thanked Ms. D (“She was so nice!” Dad commented loudly as we pushed his wheelchair down the hallway) and forged ahead.  

Lab Tech took blood from Dad’s left arm, which he didn’t feel at all due to the continued sensation problems.  I thought she had thought the process through and figured it was kinder to stick the numb arm, especially since it took her a few tries to get the needle into his tricky steroid-abused vessel, but then I saw her hand the glass vile of blood to Dad in his left hand for him to hold while she turned to fill out his paperwork.  Dad could move his left arm and leg; he just couldn’t feel them, plus his attention span was, well, not great, and so within 30 seconds he started to relax his hand and I had to dive to catch the vile before it hit the ground.  “Uh-oh!  That was close!” Lab Tech said when she realized what had happened.  Hopefully she won’t make that mistake again.  

Next Dad had to give a urine sample, which was a challenge for the above mentioned reasons as well as the fact that he almost never remembered to lock the brakes on the wheels of his wheelchair, and so he needed verbal prompts through the bathroom door for safety so that he didn’t fall.  I got lots of odd looks from those in the area as I shouted through the closed bathroom door in the hallway, but Dad got the job done and delivered the goods with his right hand.  We moved into the exam room, where luckily we didn’t wait long before the oncologist’s handy-dandy nurse practitioner came in.  The oncologist himself was out of town at a conference that day (hopefully, I thought, learning all about treating GBM!).  

“The blood work looks good, weight is down but I understand you’ve meet with the dietician so let’s don’t worry about that for now,” NP said quickly.  “Any questions?”  Ummm, have we met?  

I had TONS of questions, starting with WHY THE HELL IS THIS HAPPENING and more recently WHY HAVEN’T WE SEEN ANY OF THAT MAGIC WE WERE PROMISED YET?  But I stayed focused on the list in the Notebook, the things that were most urgent and the quickest fixes, like again requesting an appointment with a neuropsychologist (“The only one we have is out through mid-January, but I’ll have the receptionist set you up for something then!”) and reminding her about the need for all lab reports to be faxed to Duke per the instructions of the protocol.  (“Will do!”)  I asked for refills on a couple of prescriptions and then worked my way to the steroid issue:  when could we start to decrease the steroids like the neuro-oncologists at Duke had recommended?  (“Because he’s still having those headaches, let me consult with our on-site oncologist and let you know while he’s getting the chemo.”)  Well, ok, then, let’s get the show on the road!

Onward to the chemo room.  Since Dad had gotten his first round of chemo/Avastin at Duke, it was our first time in this Chemo Suite, as it was ineptly called.  As soon as we walked in, I could tell the vibe was totally different here than at Duke.  The room was very crowded; in fact, Mom, Dad, and I had to stand huddled in a corner for about ten minutes just waiting on a chair to open up for him.  It was really noisy, which Dad hated, and there were no curtains or other dividers between the mauve chemo chairs at all, which I hated right away and knew that Dad would hate after a short while in that frenetic room.  In this not-so-sweet “suite,” the unsightly chairs were set up around a disorganized-looking circular-shaped nurses’ station in the center, like chairs around a campfire except nobody was singing or roasting marshmallows here.  In fact, everybody looked pretty miserable.

We took Dad over to his assigned chair and got him settled in.  There was a tiny “support person” chair to one side, so Mom sat there while I stood behind Dad’s recliner.  Thirty minutes later, we were still waiting, and so I got the attention of one of the rapidly-moving nurses and asked what the deal was.  “We’re still waiting on the doctor to order the meds for him,” she said.  Um, WHAT?  “He can’t order anything until after he’s seen the patient first.”  Well, assuming the Nurse Practitioner was the stand-in for the oncologist, Dad had already been seen, I told her.  We volleyed back and forth on this issue and she was very nice, but she had to make several phone calls and then type everything into her computer at the nurses’ station before the IV bags could be brought over, which took another 45 minutes, during which time Dad was getting restless.  Finally, the IV drip was started and Round 2 was on.  

Because we were so delayed in getting the chemo started, though, we were unsure if Mom would make it on time to a late afternoon appointment that she had.  I looked at Dad, who looked pretty relaxed by that time, and the single chair in the small space beside him, and I told Mom that I thought she should call my aunt for a ride home to get her car so that she could go to her appointment while Dad and I finished up.  Not only did there not seem to be a reason for both of us to stay while we waited for the drip to finish, but the logistics in the cramped Chemo Suite made it almost impossible for a patient to have more than one person waiting with him.

After Mom left, I got out my new iPad so I could show it to Dad for entertainment/distraction while we waited.  He had a hard time paying attention due to the high level of activity that was going on in the room - the alarms on the IV’s, the talking, the TV’s, the overhead announcements, and to top it off the Christmas muzak that was playing in the background.  I put the iPad away and tried to talk to him in a soothing voice about visualization of cancer cells being destroyed.  He wasn’t much buying that either.  A short while later, he announced that he had to go to the bathroom, and so I hustled him into his wheelchair, and a nurse pushed his IV pole along behind us to the private-stall restroom around the corner.  I got the wheels on the wheelchair locked and the IV pole situated so that it was out of his way and then stepped out of the bathroom to give him some privacy.  The nurse and I stood outside the door waiting.  Dad kept yelling to us that he was ok (“and don’t come it!” he said over and over), until finally I heard the clank of metal against metal and knew it was time to check things out.  He was perched awkwardly in the wheelchair and was trying to adjust the footrests but had the IV line completely wrapped around both of his legs.  By the time we got him untangled, Dad was frustrated, embarrassed, and very distressed.  Another patient was waiting to use the bathroom, and so the nurse and I got Dad out of there and started moving him and the IV pole back towards the Chemo Suite.  Right when we got him back into the mauve chair, he fell apart.  “This is taking too long!” he said.  “I was supposed to be out of here hours ago!  I am one of the ones in charge of a company, and I’ve got to get back this afternoon in time to do some work!”

All of that was true, except for the part about his needing to get back to work; that of course had not been on the schedule for the day.  He started reaching towards the tape that was securing the IV in his arm like he was going to rip out the line.  I didn’t know what to do, but I did know that we had to somehow get him calmed down so we could finish up and get the hell out of there.  The nurse was trying her best to help us; at one point she suggested that he try to watch TV, but when she used the remote control by his chair to change the channel, the TV went to a Spanish-speaking station, which made Dad even angrier and more upset.  He was just completely overwhelmed.   With the help of some warm blankets, the nurse and I finally got him calmed down, and thankfully a short time later the infusion was finished.  

We made it out to the car and loaded up for the ride home.  We had gotten there in the morning and hadn’t expected to be there for more than a few hours, and so Dad had not eaten since breakfast that day except for some snack foods they had in the Chemo Suite.   I wanted to get him home and then try to figure out supper, but, as I drove down the interstate in the dark towards my parents’ house, he insisted that we stop and pick up Chinese food on the way home.  “I know just the place!” he said, and I was so glad that he seemed to be getting past the day’s troubles.  

He told me which exit of the interstate to take and directed me through several turns, throwing out comments like “You’re going to love this place!” and “Your mom and I go here pretty often!” along the way.  After this went on for awhile, I realized that not only did I not know where we were going or exactly where we were, but neither did he.  He gradually started to realize the same thing, but he wasn’t one to throw in the towel that easily, and so he gave me more directives and kept saying “It’s probably just right around the corner” until we’d been around and around in circles for more than half an hour.  The biggest obstacle was that he couldn’t remember the name of the place, and yet he could not be dissuaded from wanting to go to this particular place.  “They know me there!” he insisted.  I didn’t want to tell him the jig was up; I didn’t want to underscore anymore than our day already had how different Dad’s life had become, and I knew he was hungry and tired and just wanted to end a shitty day on a good note.  I tried calling my mom and both of my aunts but didn’t get an answer from any of them; actually I’m not sure what anyone except possibly my mom could have done because Dad didn’t know the name of where we were trying to go.

Finally, feeling like I was completely letting him down, I told Dad we should just turn around and go back to the interstate.  I pulled into the parking lot of a shopping center AND THERE IT WAS!  Dad was so excited that he literally almost jumped out of the car.  “I told you!” he said when we saw the bright lights of the restaurant, and I left it at that.  We got the food to go and headed home to meet Mom and eat our well-deserved dinner.

Coming Soon ... Part 26 - Oh, $*#^&!

Tuesday, December 13, 2011

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

Continued from Part 23

Dad, with a few of his favorite things - Foster, the newspaper, and a Sonic Diet Coke - December 2010
As we began what would become a very difficult, yet not-long-enough, December, my family prepared to batten down the hatches while we continued to wait for a sign of improvement in Dad’s condition.  Because of Dad’s continuing severe headaches, the local oncologist had said that he wanted to wait until after the second round of chemo and Avastin to begin tapering the steroids, which unfortunately meant a continuation of the sleepless nights and the other side effects like massive heartburn, sugar cravings, and brittle, rolling veins which were an issue whenever blood was taken.  Whatever it takes, though, we thought, and we pressed forward. 

Dad’s memory and reasoning continued to be affected, although what he would “get” and what he wouldn’t were sometimes difficult to predict.  We bought a dry-erase board and wrote notes and the daily schedule on it; like a shadow, it moved with him to wherever he was in the house in an attempt to help orient him and to decrease his anxiety and confusion.  Its usefulness was limited, though - sometimes he didn’t realize that he had forgotten something or that he wasn’t aware of something that he needed to know and so he didn’t think he needed to check the board, and other times he knew he wasn’t thinking clearly but he forgot to refer to the board for support.  Ironically much like the training plans Dad had always written out for himself as he was in training for one race or another before he'd gotten sick were the words the were always written at the bottom of the board: “Recovery Plan: eat, sleep, and exercise well everyday.”  The sleeping was pretty much out of Dad’s (and our) control, but we wanted him to give it his all to try to eat healthy (instead of the junk food the steroids were making him crave, and later instead of not eating much at all) and to exercise, a very strange set of reminders for he who had worked to do both every day of his life.  (Side note: also ironically and sadly, none of those of us caring for Dad were following those three rules at the time either, because we were so consumed with trying to meet his needs!)

Oddly because Dad had always been such a "morning person" and so motivated to "get up and go," each day typically began with the necessary prompts and encouragement for Dad to get out of bed mid-morning, which seemed to be the only time he did actually sleep well – and that was because most often he had to be given a pain pill in the middle of the night which took awhile to kick in.  Home health therapists came in and out of the house throughout the day; it was of great frustration that they did not seem to coordinate with each other at all and that they appeared not to even consider the sleepless nights that were going on at my parents’ house or the desperate need for routine for Dad and Mom and those of us who were there to support them.  As with the therapy staff at the hospital and at rehab, it soon became apparent that they had little to no experience with working with patients with brain tumors; they tended to treat him more like a patient who'd had a stroke, and those two things are vastly different.

One day the PT came at 8 a.m. (an hour after Dad had finally gotten to sleep from the night before!), the OT came at 11:30, and the Speech Therapist came at 3:00, thus thwarting any type of bid for a nap or for venturing to Sonic for a large Diet Coke, Dad’s main pleasure for the day on many days.  The next day, the therapies were at 9:30, 1:00, and 4:00.  There were lots of last-minute schedule adjustments and some cancellations by the therapists, too.  The only consistency from the home health agency was the inconsistency.  Therapy was hard for Dad; he wasn’t the Road Warrior/gym rat that he had been for 50 years before.  He tried to get on the recumbent bike for some extra exercise some days, but mostly he just tried to tolerate the sporadic visits of the therapists and a select few other people who stopped by as he fought off exhaustion. 

The nighttime routine went like this: around 8 p.m., Dad started to comment about being ready for bed from his position in the recliner; every day was a very hard day for him, plus he really couldn’t sustain his attention long enough to watch TV or read and so he was, in short, bored and frustrated.  On the nights when we would help him to bed that early, he tended to fall asleep for an hour or two and then be up for the night, often with a severe headache and sometimes with awful heartburn too.  Most nights, we would try to keep him up longer and attempt to get him to eat a healthy snack so that he could have something in his stomach and stay up until at least 10:00 p.m., at which time he would make it to the bed, where he would put on his reading glasses, prop up in the bed with pillows, and try in vain to read.  He seemed to alternate between a Lance Armstrong book, the December issue of Triathlete magazine (“I doubt it’s going to be my ‘best season ever,’” he said every time he looked at the cover of that edition), and a binder of info on brain cancer that I had put together for him, complete with highlighted sections about nutrition and exercise and articles about how effective Avastin was in treating GBM. 

When the 20 minute-long period of reading/re-reading concluded, Dad started demanding that Mom go to bed, too.  When she did, he was typically super-chatty for a couple of hours, and then he always asked The Nighttime Question:  “We’re going to beat this thing, right?” 

As unaware (and therefore unconcerned) as Dad usually seemed about the gravity of his condition (a good thing in our eyes at the time, although looking back I see that it should have been more concerning than comforting to us), he did seem to know on some level what was going on with his health.  Obviously, things weren't great – he had gone from being able to bike 100 miles over rolling hills as part of a moderately easy workout day to not being able to ride more than 10 minutes on a recumbent bicycle in his dining room, not to mention the whole can't work/can't drive thing.   Of course, Mom always responded to The Nighttime Question with a resounding, very confident, “YES!” and then crossed her fingers that he would be able to relax enough to sleep some over the next few hours, which he most often did not.

On the nights that one of my sisters or I slept on the couch in the next room for back-up support, almost every time, there was a need for a tag-team effort around 2:00-3:00 a.m., at which time Mom went to the couch or the guest room to get a few hours of sleep and the back-up person joined Dad for the late night shift.  Anxiety was a challenging bedfellow, and, when coupled with a bad headache or that stupid heartburn, Dad was up for the count.  If Mom or one of us dozed for a few minutes or even just stopped talking for a brief period of time in effort to get Dad to settle down so that he could sleep, he often called out into the dark, Hello??  Is anybody even here?”  Nope, there wasn’t much sleeping going on for any of us. 

Some of the late-night conversations were, perhaps oddly, enjoyable.  Others were about dreams and thoughts that Dad had, most of which were on the darker side.  Many were just discussions about memories of the past, intertwined with fear and worry in the present and hope (desperation) for the future.  Dad was the most optimistic person I had ever known, and it was one of my main goals at the time to foster that in him, to protect him from knowing all of the cold, hard, ugly, sucky truth.  I believed in the power of belief, and of that we had just enough to get us through the day (and the night).

Something that started while Dad was in rehab and continued to increase in the month of December was Dad’s frustration level that resulted in intermittent flashes of anger.  He was the most easy-going person I knew, pre-cancer, but the combination of sleeplessness, anxiety, headaches, indignity from the lack of independence and privacy, and – last but not least – the rage that is normally seen after a frontal-lobe brain injury, not to mention the emotions seen in people on high-dose steroids as he was, were a tough combination to overcome.  Depression and Anger were not welcomed guests; they invited themselves over just as the cancer had, and all we could do was try to explain things to Dad and to ourselves and to hold onto every ounce of compassion, understanding, patience, and love for this man that was our hero.  He wanted his life back – hell, he just wanted to have some privacy and to be able to sleep.  We wanted that, too, and so much more for him.

Coming Soon ... Part 25 - Round 2!