Thoughts on The Boston Marathon

I grew up watching, reading, and listening to news about the Boston Marathon; as a runner and a fan of the competitive part of the sport for nearly 35 years, I've always loved following the stories from races for both the top contenders and the back-of-the-packers.  As a current back-of-the-packer myself, I know that every runner has a story, and, especially for big events like marathons, every finish impacts each participant in many different ways.  

The marathon is the apex of the sport for lots of runners, the quintessential goal, the quest of the most dedicated amongst us.  And the Boston Marathon, or "The Boston" or just "Boston," as it is typically called in the athletic world, is the pinnacle of all marathons.  It's the world's oldest ongoing marathon, with this being its 117th year, and it's probably the world's most well-known road-racing event.  Boston is always run on Patriots' Day, the third Monday in April, which, unlike the majority of other marathons in the U.S., means that it's always held on a Monday.  Because of the many hills along the course and the tendency for the temperatures to soar into the 80-degree range during the event, the race is considered to be one of the more challenging marathons in our country.  The Boston Marathon is the only marathon in the U.S. that has a qualifying time requirement for entry, based on the gender and age of each runner, with the general rules stating that a runner must have completed a "qualifying marathon" within an 18 month period prior to Boston.  As a result of the strict qualifying requirements and the difficulty factor, Boston Marathon runners are generally revered by all other runners, or at least by those of us who have been involved in the sport for awhile. 

A masterpiece about Dad's first Boston by my sister, Jennifer

Growing up, I remember hearing my dad talking about Boston as if it were the Holy Grail of running.  Even before he had run it the first time in 1979 at the age of 35, I remember him telling my sisters and me about the course, which runs through eight different towns and finishes on Copley Square in Boston.  In the months leading up to his Boston debut, I remember him worrying aloud about Heartbreak Hill, the most well-known challenge in the race, even after he'd run up and down the levee alongside the Mississippi River literally hundreds of times as part of the 100+ miles per week he ran for months before the race.  I remember my grandfather, my dad's dad, coming to stay with my sisters and me for a few days while my parents went to Boston that April, and I remember my mom calling us after the race to tell us how Dad had done (his finish time was 2:46:04).  I remember standing in the kitchen of our house with my sisters, cheering through the phone line for my dad and then chanting his finish place over and over, so many times that the number was forever lodged in my brain.  In fact, one day, during the time when my dad was sick, we were talking about the many races he had run over the years, and he was surprised when I told him that I still remembered what place he finished in at his first Boston:  1,196th, which put him in the top 15% of finishers that year.

There are around half a million spectators and usually between 20,000 and 25,000 runners at every Boston Marathon.  The Centennial Boston Marathon, held in 1996, which was my dad's second time to run it, set a record for the most entrants, at around 38,000 runners.  

I remember Dad talking excitedly after he'd gotten back from the race the first time about going to the Bill Rogers Running Store and meeting Bill Rodgers, who had won the marathon for the third time that year, setting a course record in the process.  Dad commented that he especially admired the guy, "Boston Billy" as he was called, because of his modesty and his friendliness, which, ironically, were also two of Dad's strongest qualities.  The women's division was won that year by Joan Benoit, then 21 years old, who, with a time of 2:35, bettered the previously set record for women's finish time by 8 minutes. 

Joan, or "Joanie" as she was called, won Boston again in 1983, this time finishing in 2:22, breaking the women's world record by two minutes, and then she followed up by taking the gold medal in the Olympic marathon in L.A. in 1984, the year the women's marathon was established as an Olympic event.  She, incidentally, still holds the record for the American woman with the fastest finish in both the Olympic marathon and in the Chicago Marathon.  Yesterday, Joan ran Boston again to celebrate the 30th anniversary of her most recent Boston win, as did the men's winner from '83, Greg Meyer, who was in fact the last American to have won the race.  Joan, now age 55, was quoted as saying before the race that she planned to "go out fast," aiming to finish within 30 minutes of her winning time from 30 years ago, a goal that my dad would have absolutely loved hearing about - and one that she achieved with a finish time of 2:50.

To Joanie, from my dad and me: you're still a total badass!

Countless people - even those who have never even cared at all about the Boston Marathon before yesterday - watched the replays and read the recounts of the tragedy that unfolded after the bombings, the vast majority of people whom, I would venture to guess, realized that they could not even imagine the chaos and the terror than ensued on the race course and around the city, nor could they really comprehend the emotions  about the losses suffered by the runners and spectators of so many things: life, safety, trust, faith, and even reward for such dedication and effort on the part of the thousands of runners who trained extensively for the race over the course of the last six months or more.  

"To be a consistent winner means preparing not just one day, one month, or even one year - but for a lifetime." ~Bill Rodgers, 1979

"To be a consistent winner means preparing not just one day, one month,

or even one year - but for a lifetime." ~Bill Rodgers, 1979

My brother Lee has qualified for Boston twice and has run it once; he shares in the family's fascination with the marathon's history and with each year's competitive field.  No one in my family was at the Boston Marathon this year; however, on some level, we can imagine the turmoil experienced by those who were there yesterday because of tragic events that have affected us at other races in years past, which is a different story in its own right.  Like everyone else, my family feels so sad for everyone affected by the bombing; there is no understanding the evil that drives such madness.  The term Heartbreak Hill has a whole new meaning for all of the runners there yesterday and for those of us whose hearts go out to those injured and otherwise affected by the malevolence of those responsible.

In memory of Martin Richard 

Two Years Ago

Today I am remembering my family's Journey of Hope exactly two years ago, when we took my dad to The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in search of a treatment - or maybe even a cure - for brain cancer.

After Dad had gotten his first round of chemo and the "Magic Bullet" drug Avastin there, we spent the night in Durham, as we'd been told by the doctors that we had to do after the treatment in case Dad had any side effects after the first round that required medical attention.

We hadn't planned on staying that night originally; we had been told that we could get to Durham on the Monday before Thanksgiving, go to the first day of appointments at Duke on Tuesday, meet with the advisory team of neuro-oncologists on Wednesday morning, and then hit the road to travel the 500 miles back to my parents' house, in time to make it home that night so we could be there for Thanksgiving.  Our Back-up Plan was to drive part of the way back on Wednesday, spending the night at a hotel along the way and then getting up early on Thanksgiving Day to drive the rest of the way home.

But we also hadn't expected for the team to recommend that Dad start treatment there at Duke, right then.  And, since part of the deal for his doing that was that we stay in the area overnight, we agreed to stick around.  While I sat with Dad in the clinic as the medicine dripped into his veins, my mom and my sister Jennifer met with a hospital social worker to go over insurance coverage issues and other things; the staff at the Brain Tumor Center seemed much more well versed on several important matters like that than did the people with whom we had been dealing at the local oncologist's office.  My brother-in-law, Peter, who had taken a red-eye flight from California the night before to be with us in Durham, hastily searched the city for a hotel that had a suite-style room or two adjoining rooms - one of which we needed to be wheelchair accessible - available for that night.  Evidently, the night before Thanksgiving is a big night for hotels in that area, though, and the only hotel with enough available space for all of us to be in close proximity was not set up for handicapped access.  It was what it was, though, and so after a flurry of text messages back and forth between all of us, Peter booked the rooms and drove back to the hospital to pick up Dad and me, as Mom and Jennifer will still in a meeting there.

Once we got to the hotel, we got Dad situated in the wheelchair, and then I pushed him and Peter carried the luggage up to the room.  Dad wanted to sit in an armchair by the window in our room and watch TV ("It's way too early for bed," he said, as much to himself as to anyone.).  Peter went to the vending machine and got Dad a big bag of peanut M&M's and a Diet Coke, which he poured over ice into a styrofoam cup.  He put the goods on the table next to Dad, and then he and I took a look at the set up in the hotel room bathroom; I was very apprehensive about the fact that there were no grab bars (and essentially nothing else for Dad to hold onto) by the toilet, and, to make matters worse, the toilet seat was low, which would make it even harder (and more dangerous) for Dad to get up and down.  Peter and I decided that he would go to a drug store to try to find grab bars that could be installed temporarily; that seemed to be our only option at the time.

In the midst of our conference by the bathroom door, we heard a noise from the bedroom area where Dad was.  We hurried in and saw Dad nonchalantly sitting in the chair watching TV, with most of his drink and the majority of the M&M's spilled all over the floor.  "What happened?" I asked him.  "I didn't try to get up," he responded, which made me think that either he did and didn't want to admit that he couldn't do it, or he had no idea that I was referring to the fact that there was stuff spilled all over the floor next to his chair.  Peter grabbed towels from the bathroom, and, as he and I cleaned up the mess, I noticed that the table where the drink and candy had been was on Dad's left side, the side that was his dominant but in which he had impairment in sensation and strength because of the tumor.  It was evident that he had either accidentally knocked over the stuff on the table by just moving his arm, or he had reached for something on the table and knocked it over, or he had tried to get up out of the chair by pressing down on the only thing around him - the table- and then the table had tipped slightly, causing him to have to sit back down and the stuff on it to spill.   In any case, he seemed to have forgotten that anything had happened.  When he saw us cleaning up the spill, though, he started asking questions: "Did I do that?" and "Where is Vicki [my mom]?" and "When are we going home?" - and - the one that I thought was the most alarming - "Am I going to get chemo today?"  Shit, I thought.  I had been so hopeful over the last few hours as we heard from the Duke team about the benefits of their treatment protocol and then as I sat beside Dad in the Chemo Room watching him get the Magic Bullet treatment.  Now I was just scared, because with him not noticing or not remembering how he'd spilled and then with those questions, it seemed like he was getting worse.

But, as we had been doing during that time, Peter and I exchanged a look of concern, but we held it together and moved on to the next task at hand: while I sat with Dad in the hotel room, Peter drove to pick up my mom and Jennifer at the clinic.  He dropped off my mom back at the hotel and then he and Jennifer went on a quest for the safety rails, which, as seemed to be par for the course for us, turned out to be not nearly as easy as we'd thought it would be.  Traffic was nightmarish, and none of the drug stores in the area had what we needed in stock.  My sister tried to look up medical supply companies on her cell phone as Peter fought the traffic, but cell phone signal was sketchy.  Finally, they found a little hospital supply store that had the rails; they paid for their purchase and made their way back to the hotel.

Once back in the room, Peter and I looked at the directions for installing the grab bars and realized we needed a screwdriver.  He called the front desk and got connected to the hotel maintenance guy, who agreed to let us borrow one.  Peter handily removed the toilet seat, fastened the frame that was connected to the grab bar to the toilet, and replaced the seat.  Good to go.

The sun was just going down by that time, and Dad was already fighting sleep.  Like every night, he talked us into helping him into the bed and then talked about how he wasn't hungry but would try to eat something for supper and how he knew it would make for an odd sleep schedule to go to sleep that early but he was so tired he didn't think he could help it.

We let him sit up in bed watching TV as we came up with a game plan for what to do for supper. Peter volunteered to sit with him while Mom, Jennifer, and I went downstairs to the hotel restaurant, and we said we would bring food back to the room for the two of them.

I remember sitting in the restaurant thinking about just how surreal the whole situation was, from the fact that my dad had brain cancer, to the way his treatment had been started much more quickly than we'd anticipated, to how we'd been directed to stay in the area for an extra night, which meant we wouldn't make it back in time to join in on the Thanksgiving feast with the rest of my large extended family who had been expecting to celebrate with us after our trip.  As we ate, we talked about what a whirlwind the trip had been, how grateful we were that the Duke team seemed to be in our corner, and how hopeful we were that the treatment would help.

After we'd gotten back to the room and Peter and Dad had eaten, Dad announced that he was going to sleep, which was a cue for Peter, Jennifer, and me to retreat to the hotel room next door.  We positioned the door between the adjoining rooms so that it was almost closed, so we could hear if we were needed in my parents' room but so that we could whisper in our room and not disturb my parents.

As usual, Dad had to get up a few times during the night to go to the bathroom, and we were glad for the grab bars each time.  Because he had been started on the chemo pill just after he had the IV treatment that day, we had been instructed to be sure that the lid of the toilet was closed each time before he flushed and to make sure he thoroughly washed his hands after using the bathroom to protect him against toxic chemicals (Doesn't it seem weird that they were having him ingest the chemicals but he had to take extra precaution to avoid being exposed to them externally?).  We tried prompting him through the bathroom door to remind him, but, because he didn't always listen to us before he did something like flush or try to stand up by himself, eventually my mom just started going in there with him to be sure that he was following the safety procedures.

The next morning, on Thanksgiving Day, everyone but Dad woke up early and packed up our gear; we were eager to get started on the drive home.  We had a hard time getting Dad up and getting him ready; he wanted to have his face shaved, and it took major negotiating to skip it so we could just load up and go.  It was quite the antithesis to his usual tendency when it came to starting out on a road trip; every other time, he was the one getting up early and urging the rest of us to hurry.

Many restaurants and even some gas stations were closed along the way on the long drive home, and, by the time we finally made it back to my parents' house that night, we were hungry and exhausted.  We ate leftover Thanksgiving food that had been packaged up and put in the refrigerator for us after the big family meal that we'd missed.  Dad ate a little turkey and dressing and then went to bed; as usual, though, even with as tired as he said he was at the beginning of the night, he had a hard time sleeping and battled a headache all night, finally falling into a medicated sleep just before the sun came up.

The ringing of my parents' telephone woke us up early the next morning; it was a nurse from the nursing home where my grandmother was calling to tell us that Grandmom had taken a turn for the worse.  My siblings and I hurriedly got dressed and drove to the nursing home to be with Grandmom, and the challenges continued all day long.  A cold front had come through overnight, and it was very cold and windy outside, which added to our problems, especially during the family photo shoot.  

When I think back to that day, one of the most difficult days of my life, I remember the brutal cold, the confusion, the fatigue, and the extreme concern about Grandmom, but what I remember most is how hard Dad worked to take part in what was going on around him - and the feeling of love between all of us.  I remember noticing how difficult it was for Dad to tolerate the cold weather as he was helped out of the car, as he sat in the wheelchair for pictures to be taken, and as he was helped back into the car so he could get back home.  Like a lot of things going on then, the photo shoot seemed almost dreamlike: for as much as I was in denial about the prognosis of the brain cancer, I guess some of the reality had sunken in because not long after the news of his diagnosis had been given to us I scheduled a family photo shoot for the day after Thanksgiving, knowing (desperately hoping?) that the whole family would be together then so that we could have our picture taken, all together.  

We made it through the photo shoot and through the next couple of days, trying to keep all of our spirits up as we watched over Dad and Grandmom.  

I don't remember a lot from the time my dad was sick, including the details of what else we did over that weekend, but I do remember that I felt a sense of unease (even more than usual) when I left my parents' house that Sunday.  I really wanted to be present when the "magic" we had been promised happened; I envisioned Dad suddenly standing up from the bed or his recliner, steady on his feet and with clarity in his eyes and a smile on his face.  But more than I wanted to be there to witness first-hand the miracle, I just wanted one to happen.  I wanted to see the fulfillment of the cause-and-effect; I wanted the promise of the hope that we had to be realized.  It had been a whirlwind past few weeks, especially the one leading up to Thanksgiving, and I was exhausted both mentally and physically, but I was so very thankful for the love and the time together that we had.

Steps To Nowhere

Disclaimer:  This is a long post, full of emotion about two things that are important to me - my dad and my profession.  I know LOTS of health care workers including many OT's, PT's, and Speech Therapists who are excellent at what they do and who are dedicated to going the extra mile to advocate for their patients and to meet their patients' needs.  Unfortunately, though, the majority of those with whom we came into contact during my dad's illness were not of that caliber, a fact with which I am finding it very difficult to reconcile.  Here's the story ...

Like lots of kids starting off in college, I really didn't know what I wanted to be when I grew up when I left home to go to college at the age of 18.  It was my dad who took a good look at what my interests and my strengths were and who eventually found out about occupational therapy, a field in which I have loved practicing for the last 21 years.  

I think some people just kind of fall into a career that they see as better than nothing or just so-so, some go with something that motivates them with money, and some just punch the clock while hoping that something better comes along.  And then, of course, there are the lucky ones like me: those who somehow find their way to doing something for a career that they feel they were meant to do, something that, while not always fun or perfect in every way, gives them purpose and intertwines with whom they are in such a way that they know they are following their calling.  I am one of the lucky ones, thanks to my dad.  That's why part of what happened while he was sick disturbs me on such a level that I am afraid that a part of me will always be left feeling disheartened and disillusioned.

Steps to nowhere

The first contact we had with the world of rehab during Dad's illness was just a few days after his surgery, and right away things started out with a series of fumbles and ball-dropping.  The slew of physicians on Dad's case kept telling us that Dad would begin to be seen for Occupational Therapy ("OT") and Physical Therapy ("PT") as soon as he was transferred out of the ICU onto a regular floor, which happened early on the Friday afternoon after his surgery on Wednesday.  When no one from rehab showed up that day or the next morning, we asked again when it would start, and at that point we were told they “don’t do therapy on the weekend."  Evidently, though, the doctors weren’t aware of this policy because when the physician’s assistant for the neurosurgeon came to see Dad around noon on Saturday, he was surprised to learn that therapy services had yet to start for Dad.  Evidently he followed up on it, because about an hour later the OT and the PT showed up.  They had Dad sit up on the side of the bed and use the walker to get around the room a little (he was unsteady during both of these tasks), and they checked his movement and strength (fine on the right, not good on the left).  All in all, the two therapists together were with Dad for a total of about 20 minutes, about half of which time was spent with them telling us that they thought he needed to go to an inpatient rehab hospital for a week or two and that we should visit a few in the area right away since the doctors were already talking about discharge from the hospital in a couple of days.  

Once the initial mini-therapy session was over, my family was left to figure out what our next step was, with the knowledge that we had to work something out in the next 48 hours or less or essentially Dad would be sent home with only a follow-up appointment with the oncologist.  Even now, thinking back to that time gives rise to the sound of a clock ticking loudly in my head; especially considering that we had just been given the news of how severely limited Dad's time was likely to be, given his prognosis. It was nothing short of shocking to think that after only a brief session of therapy the hospital staff seemed to feel that it was just fine to push us out of the nest, even though there was no possible way they could know if we were ready to fly or not (we weren't!).  

And so we were left completely on our own to find a suitable rehab facility in essentially one day (a Sunday at that!).  Keep in mind, too, that at least one of us had to stay right with Dad every second of the day and night, too, because of his impaired balance and mobility and his safety awareness issues, at the same time that we were literally left to use Google and the yellow pages to find some place that we felt could have a positive impact on Dad's future.  To say that the task of figuring out what to do next was daunting is a vast understatement.  

That Sunday afternoon, we toured the only two rehab facilities in the area that took Dad's insurance and that met our criteria, which at that point had essentially been whittled down to somewhere that had therapy services available to be carried out 7 days per week, was clean and safe, would allow around-the-clock family visitation, and had an opening the next day.  We were also hoping to find a place with a Case Manager so that while Dad got his therapies and finished recovering from the brain surgery from the week before, we could get the support and referrals we needed to modify my parents' house to make it safe for Dad to go home and to go ahead and set up all of the follow-up care that would be needed after discharge.  We settled on the second place we saw and let the admissions coordinator know that we were seeking a very short-term stay with aggressive therapy services, probably a week at most so we could then get Dad home and have him get ready to start treatment for the cancer.  The coordinator said that could be arranged.  We were relieved and felt that we had a solid plan in place for the time being.

From the minute we arrived at the rehab hospital, though, I felt there was a lapse in communication and a gap in the services that should have been provided.  As Dad read the newspaper in bed and Mom and I unpacked, the Rehab Director came by to meet Dad.  In talking to him about Dad's medical history, I reiterated that we were seeking a short-term stay of about a week with the goal of getting intensive therapies provided for Dad so that he could get a jump-start in his recovery.  The Director said that the therapists there would evaluate him and then the team would report back to us with a plan; I told him that we would like to have input into the plan and that we were also seeking recommendations about any equipment and follow-up outpatient therapy services that Dad would need after he left the rehab setting. 

Very early the next day, we were presented with a copy of the schedule for Dad's therapy sessions, which were to begin that morning.  The schedule said that Dad would get OT, PT, and Speech Therapy (to work on memory) back-to-back starting at 8 a.m., and then he would get more therapy that afternoon.  Good plan, except the OT showed up 45 minutes late, which threw off the entire schedule.  In what became a pattern during Dad’s stay there, the therapists juggled things around to try to fit Dad in, and oftentimes Dad and the family member who was with him were not informed of the changes and/or the scheduled ended up not being able to be adjusted and some of his therapy got left out. As a result, over the course of his rehab stay, Dad did a lot of waiting, and, as par for a brain injury like his, he was having trouble dealing with schedule changes or uncertainty.  He asked many times what was next, but the answer didn't seem clear to anyone around.

In the afternoon of Dad's first full day at rehab, the Director came into Dad's room and told my aunt, who was staying with Dad while Mom went home for a wardrobe change, that patients there typically stayed for a couple of weeks or more.  He said that the therapists would present my family with a plan in the next couple of days.  When my aunt called to tell me about the conversation, a red flag went up in my head: before we had made the commitment for Dad to come to that facility and less than 24 hours prior to that time, I specifically told the Director that we only wanted Dad to be there for about a week.  Even if the guy didn't know ANYTHING AT ALL about Dad's prognosis, all he had to do was google "GBM" and he would've immediately seen why we were so concerned with time.  Just in case the prognosis that we'd been given had any merit at all, we wanted Dad to be able to do what he wanted to do, and it was becoming clearer by the minute that staying there was not of his preference.  When I got back to the rehab center the next evening, I was told that the Director wasn't on site but that it would be conveyed to him that I needed to speak to him.  He didn't come by all the next morning, and that afternoon we went for Dad's first appointment with the oncologist, after which I had to leave to go home so I could go to work the next day.  After a round of phone tag the following day, I finally got him on the phone, and he told me that the team had presented the plan for a 3-week long stay to Mom and Dad and they'd agreed.  I was stunned that the rehab team had met without input from my family; they hadn't asked any of us the first thing about how my parents' house was structured or what my dad hoped to be able to do when he was discharged.   He insisted that with the extra time Dad would be “much more likely to achieve the team’s goals of supervised/modified independence,” which in rehab terms means that a person goes home able to take care of himself with special equipment (like a walker and a shower bench) but would need another adult to be nearby in case he needed to ask for assistance.  He told me he planned to go over the specifics of the goals the therapists had set for Dad (goals that were set without any family input), and that he would meet with me when I was at the rehab facility in a few days.  I see that conversation now as almost brainwashing; I am no sucker, and, like the rest of my family, I was fierce in my effort to do what was right for Dad, but somehow the guy convinced me that he was right.  Maybe it was because I was totally sleep-deprived and stressed-out, maybe it was because I presumed that given his position he was experienced and knew better than I did, maybe it was of the belief that I had that people were there to help us in our time of need without an agenda of their own.  Maybe (maybe even likely) it was part of the bargaining process that my family was willing to participate in: if it took having Dad stay at rehab for longer to get him back on track, of course that's what we would do!  Maybe it wasn't even that the plan to have him stay longer was wrong; certainly, though, from my current perspective, the way the plan was developed and presented to us was absolutely not right, and, even worse, the quality of the services and the assistance that we were provided as part of that plan was far from adequate, both in my personal and in my professional opinion.

We were also in the midst of dealing with meeting Dad's needs around the clock and with the huge paperwork demands for legal things like getting medical power of attorney and financial things like checking into filing for disability and follow-up things like filling in the 10+ pages of detailed information required to get Dad into the Duke program.  Everyone in the family who was involved in Dad's care wanted to do what was best for Dad, and it was easy to believe that the plan proposed by the rehab team was just that.  And so we threw ourselves into doing what we thought was based on what we thought was their expertise; we agreed that Dad would stay at rehab for three weeks, and we voiced our mission over and over to the staff that in that amount of time we wanted to have the house set up for Dad, any necessary equipment in place, and all the follow-up services lined up so that when we left there, we were 100% ready for whatever was coming next for Dad.

Besides the plan for the length of time Dad was to be at the rehab hospital, though, there were other issues that I also felt (and still feel) were being mishandled.  I sat in on several therapy sessions with Dad while he was there.  With my rehab background and having spent so much time with him since the onset of his illness, I knew what his deficits were; I also knew about brain injuries and about what the point of doing certain activities as part of the therapy sessions were - but Dad didn't know either of those things.  Pre-cancer, he didn't, and certainly in the midst of everything, he didn't, and it was part of the job of the therapists to try to inform him of those things.  As I've mentioned, Dad detested inefficiency; he used to comment to me that he thought "all of these new-fangled training programs for runners are just money-making schemes," and then he'd add "Here's the real secret to becoming a better runner:  RUN MORE!"  And so it isn't hard to imagine the frustration, the boredom, the feeling of stagnancy that he must have been feeling when the therapists asked him to do things like matching cards and sorting little trinkets into piles, doing word searches and recalling random words called out to him, and performing leg lifts ("With no weights AT ALL?" Dad incredulously asked the PT the first time she told him to lie on the mat and lift each leg ten times.) and going up and down the make-shift set of wooden steps in the middle of the therapy room ("Steps to nowhere," Dad muttered prophetically as he went up and then down the stairs again and again as part of a PT workout.)  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.  Over the course of the time Dad was in rehab, I watched him go from being fairly upbeat and ready to face his charge, to being openly bored and confused about the point of things, to being aggravated and resentful during his therapy sessions.

But still he tried his best, each and every time he was asked to do an exercise or a task, even when he didn't feel like it and even though he didn't see the point.  The couple of times he requested that a therapy session be cut short, he later made up for it by doing extra repetitions and by asking one of us to quiz him on something; he seemed to think that by doing "homework" he would get to go home early.  But again, the payoff from doing the work wasn't as deserved; not only did Dad not get discharged early, he didn't make the progress we had been assured that he would.

Believe me, I know there are know guarantees in life; I knew it then too, from a professional standpoint more than anything: sometimes a person can put forth 100% effort in therapy sessions and still not meet the goals that have been set.  However, what I also know is that it is the responsibility of the rehab team to reassess and regroup whenever necessary, and, if independence doesn't seem to be in the cards at least at that point for the patient, it's their job to make an effort to set that person up with adaptive equipment, follow-up services, and support so that the goal of working towards ensuring safety and some degree of satisfaction on the part of the patient is achieved.  That part is something we as health care workers can control, the follow-through and the empathy and the compassion, even if they technically go beyond the spectrum of our job description.  

Besides having Dad get better through therapy sessions while he was at rehab, our second goal for during that time was to have a social worker or someone like that to help us coordinate everything that was going on.  Mom and Dad first met the Case Manager on Dad's fourth day in rehab when she came by Dad's room (not great when you consider we were originally only planning to be there for a week); she told them she would help with any legal paperwork and also with coordinating services that would be needed after discharge.  She said that the team would meet the following week to decide how much therapy Dad would need after he left rehab and whether they recommended he be seen for therapy at home or in a clinic as an outpatient.  

After that, I tried to contact the Case Manager by phone but kept getting her voice mail and did not get a returned phone call despite leaving repeated messages.   Several times when I was at the facility I went to her office and left messages with the nursing staff that I needed to talk to her; I recognized the urgency of getting the ball rolling for after-care services and supplies, and I was shocked and angered as it became more and more apparent that the Case Manager not the rest of the staff there either didn't see the importance of it or - worse - they just really didn't care.  I called it "watching the Cancer Channel;" these people evidently were just find with putting in their 8 to 5 and then going home without another thought about their patients - if they aren't at work ("watching the Cancer Channel"), to them, Cancer isn't real, it isn't happening, it isn't their concern.  

Over the weekend, therapy services were sparse despite the fact that we had been told before admission that patients like Dad who were there for short-term stays would get 6-7 days of therapy per week.  Dad was restless and bored; for him, there was pretty much nothing to do except wait for the time that he could go home to come.  For us, though, there was a seemingly endless list of things to do.  One of those things was installing grab bars and getting other adaptive equipment like a shower bench set up at my parents' house.

I asked for advice from the therapists at the rehab center on this but was told we should "wait and see," an approach that seemed to us to be at best unreasonable or lazy and at worst careless or reckless.  I consulted with my physical therapist and occupational therapist friends - most of whom are pediatric therapists like I am - and then I used my friend Google to try to figure out at what height to mount the grab bars. Because the therapists at the rehab hospital couldn't/wouldn't (what's the difference?) give us names of contractors or home health therapists who could install the equipment, my husband and my brother-in-law installed grab bars in the bathrooms by the toilets and in the shower, rolled up throw rugs for safety when Dad used the walker, and rearranged furniture to make the house more accessible.  If we couldn't find help to climb Mt. Everest, by DAMN we were going to work together to climb it anyway.

The days of therapy sessions were peppered with unexpected cancellations and rescheduling of therapy sessions for reasons that were not always explained to us, early morning wake-ups by the staff for deliveries of breakfast trays and medications ("The day shift gets mad when they get here at 6:30 a.m. and we haven't gotten all the trays and the meds out to the patients yet," one night-shift nurse told me when I asked about the earliness of the delivery.  "Wow. Just wow," I thought, as I gritted my teeth and told myself and Dad that we just had to stick it out a little longer and then we would control our schedules for things like that.).  Somehow the speech therapy services got switched over to being provided by a student speech therapist, a young girl who was nice enough but obviously lacked the knowledge and experience that we so desperately needed and expected.  (Maybe they should've had the student provide extra sessions of speech therapy for Dad, for free, instead of billing us full price for her sessions as we later discovered they did.)

For probably a variety of reasons, Dad's 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, as much as at this point I want to not feel as upset and full of blame - deservedly or not - as I do towards the staff at the rehab center.  

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 wasn't hurt, 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.   No one in my family ever heard back from the social worker, the woman whom we had been told was our Case Manager; eventually we caught on to the very obvious fact that 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 we were the ones having to make a list and chase down the support we needed; I shutter to think what would have happened otherwise.  After being asked at least a dozen times by my family when Family Education Day would be held so that as many of us could schedule to be there as possible, the Rehab Director informed us that the training would be two days before Dad was discharged.  We 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.  He said that 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.  

At last, though, the day of discharge for Dad came, and we were able to take him home to his house which had been set up to meet his needs, no thanks to anyone at the rehab hospital.  We called and made an appointment for someone from a home health agency to come to the house to go over what types of services we could get for Dad, and it was decided that he would get OT, PT, and Speech Therapy at home.  

Right away I asked if the therapy sessions could be set up on a consistent schedule; it actually shocked me when I was told no, that the therapists each handled their own schedules, and after a week or so of dealing with them coming in and out of the house throughout the day, it became clear that we were once again at the mercy of a group of people who either just didn't get it or just didn't care.  It was of great frustration that the therapists 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 stroke patient, 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. 

Thinking I could tie Dad’s love for swimming 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.  I'm not so sure that the reason they wouldn't even consider taking him on as a patient wasn't liability; none of them were even willing to meet him much less try to figure anything out that might help us.

I was taught in OT-school that goals for therapeutic intervention should always be based on what the person wants to do; I don't recall even once while Dad was sick having a health care professional ask him or any of us what he liked to do or what his goals were.  He would've said going to a Grizzlies' game, going to the movies, going to Barnes & Noble, maybe even being able to walk his dogs around the block.  I can't for the life of me figure out why those things weren't addressed by those therapists, why they seemed to think it was just fine to have Dad work on stacking cones, squeezing a ball, and doing leg lifts instead of at least trying to focus on things that mattered to him.  My family was doing what we could to facilitate the things like that that were on Dad's Revised Bucket List, but it would have been nice to have some help.  I've taken kids to the circus, to McDonald's, and to a playground as part of therapy sessions in the past; I don't see why Dad's therapists didn't see the value in making the effort to support Dad's objectives.

And then, the icing on the cake came: the day before Dad was scheduled to get an MRI to see how the treatment was going, he fell in the den and couldn't get up.  My sister Jennifer was there with him and tried for over an hour to help Dad get up; by sheer luck, Dad's swim coach and friend Ashley showed up and was able to help Jennifer get Dad up and into the a chair.  

After Ashley left, the OT came for a therapy session that had been scheduled earlier.  Jennifer told the OT what had happened, but he really didn't seem to understand and/or care.  He had Dad do some hand exercises from the recliner in an   Jennifer asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed.  The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak.  They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom, at which point the guy hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.

 Looking back from this vantage point to the time while Dad was in the rehab hospital and to the time he spent in the home health therapy sessions, I have to say that it was a complete waste of his time.  It makes me feel ashamed to be part of a professional group with some members who choose not to go the extra mile, or possibly even not to fulfill their job responsibilities - or, taking it even one step further - even to step up to help a fellow human being.  My family was desperate to find a way to help Dad to get better, or failing that to make accommodations for him to help preserve his dignity and his enjoyment of the time he did have left; we truly felt that we were fighting for his life, and we desperately needed help from someone who could do something to help us in that fight.  

  

 

Being Present

One thing that I think I got better at during my dad’s illness was being present.  When I think back to when my children were very young and there was a lot of just being there to be done, I don’t see myself as having been good at it; so often when I should have been completely focused on the joy of motherhood, I remember feeling like I needed be taking care of something else – work, household duties, or whatever – instead of basking in the good fortune that had come to me because I was able to spend time with them.  I don’t think I was in the moment often enough back then, and, to be honest, it’s something with which I’ve often found myself struggling in many contexts over the years.

But when I was told of Dad’s diagnosis, even though I didn’t (couldn’t) believe the prognosis, I realized the preciousness of spending time with him, just in case.  When my family was told the grim statistics that were so caustically presented to us, immediately we were all reeling over the extreme vulnerability of the man we loved so much, and maybe even that of life in general.  From the time Dad was initially taken to the hospital by ambulance, in some distinct ways he seemed so different from the man he really was, but in other ways he was, well, just himself.  What Cancer didn’t take from him was his sense of humor, his kindness, his tenacity, his love for his family and friends, and maybe even his belief that things would turn out all right.

Throughout his battle with Cancer, at least some confusion was there for Dad, at times a good bit of it, but his brilliance was still there too.  As much as we wanted to protect him and to have as much time as possible with him, he worked even harder to protect us and to have as much time as possible with us, and I will always remember and respect the grand effort I am certain that took on his part.  

Over the many years that Dad was in peak physical condition, especially when he was marathon-ready, he was thin-statured.  His son-in-laws and some of his friends used to jokingly call him Skeletor and say that he looked like a POW.   (Dad took that as a compliment: “Less weight to carry on my run!” he said enthusiastically.)  But at the end of his life, Cancer actually made him a Prisoner of War – literally overnight, he couldn’t go where he wanted to go or do what he wanted to do.  Hell, he couldn’t even be left alone for one minute for fear that his “I can do it myself” attitude and the impulsiveness and disregard for safety that were handed down by the disease would land him in the floor.  Obviously, nothing and no one had been able to keep him safe from Cancer, and, the way we saw it, we’d be damned if we weren’t going to try our absolute best to keep him safe from everything else.

And that’s where being present became necessary, right from Day 1 of his illness.  That’s also were being present became a privilege for those of us who loved him so much; it was a crash course for me in priorities and in time management.  At first, as I sat with Dad and even while I helped him with the many things with which he needed help, my mind raced ahead and then behind and then ahead again.  If not for the fatigue that became so extreme and so pervasive for my mom, my sisters, and me during the ten weeks we cared for Dad, we would surely have not been able to fall asleep at all for the whirling and racing our minds were doing.  As it was, though, by the time Dad entered rehab just a few days after his brain surgery, being present was all I could do, and, as well, it was all I wanted to do.

Along the way, Dad seemed like he still had plenty of fight left in him, until he didn’t.  The world, in Dad’s eyes before Cancer, was a great place, full of fun things to do and people to interact with, full of adventure and dreams and things to look forward to.  We watched as Cancer and the four walls of the hospital, the rehab center, his house, and then the hospital again changed that over time, though, and as the light and the happiness started to leave his eyes.

People going through the kind of traumatic experience that my family was while Dad was sick are not always the easiest people with whom to interact, we knew that, and we did what we could to follow Dad’s lead and to be appreciative and patient.  Some of the nurses and techs we clicked with, and some of them we tolerated while we counted down the minutes until their shifts were over.  We weren’t ourselves; we were busy being present and taking care of Dad with every bit of intensity that we could muster, 24 hours a day.  Fear and anger and helplessness and sorrow and fatigue changed who we were; I think most of the people we knew were aware of that and realized that our world had been turned upside down and we were just muddling through.  

In the months since Dad went on ahead, I think I have lost a lot of the ability I had gained in being present.  My mind so often flashes back to scenes of Dad struggling or the faces of the people who didn’t help us and didn’t seem to care that we were failing in our efforts to save him.  It’s like a remote control gone haywire with a life of its own that's controlling my thoughts sometimes when I should be controlling them, so that I can pay attention and be present, especially when I am lucky enough to have time to spend with my family and friends; I cannot control those flashes or the distractibility and the emotions that come with them.  I am very appreciative of the times when I can focus, whether it is to concentrate on doing something that needs to be done or to take a breath and feel some positive emotions.  Oddly, sometimes when I catch myself feeling happy, I’m happy that I can be happy in that moment, but, as in a sky without a cloud in sight, it also makes me anxious and sad to know that there is a black cloud that out there that will inevitably come near again at some point in the future.

Being present more consistently has gone back on the list of goals that I have for myself, and I hope to achieve it one day soon so that I can more often bask in the good that is all around me, despite the fact that one of the best people in my life is no longer able to be present to enjoy it with me.

Part 30 – Changes

Continued from Part 29

As we entered the second half of December, the tag-team effort continued, with one of my sisters or me staying with Mom and Dad almost every night so that Mom would have back-up support during the night and for as much during other times of the day as we could arrange.  One thing that I’m not sure I have explained clearly in this blog is the amount of one-on-one assistance and supervision that was required during the time that Dad was sick.  Physically, he needed help for everything, unless he was sitting in a chair or lying on the bed, and even then he wanted/needed to have things handed to him or arranged around him for safety and convenience.  One example of this that we learned through trial and error was how to position food and/or drinks so that spills, which were so embarrassing and frustrating to Dad, were less likely to occur.  Since he still had impaired sensation and strength on the left side of his body as well as visual-perceptual issues (he often didn’t notice things in the left side of his visual field), we had to place his provisions on the right.  Drinks were served in non-breakable, lidded cups, and food was given to him on a non-breakable plate or in a plastic bowl.  Dad didn’t seem to notice that we had rearranged the furniture so that the table that was previously on the left side of his recliner was now on the right side, and he didn’t say anything about how things were served or handed to him, which brings me to my next point … 

For as many changes as there were in Dad physically, there were even more changes in him mentally.  Like I've written about (here  and here), brain cancer is distinct; it's different from other types of cancers because it most often immediately affects one’s cognitive abilities, which alters the way information is received, processed, expressed, and/or retained.  And that, of course, influences very important things such as the person’s ability to fully understand the diagnosis, the prognosis, and treatment options, and this was absolutely true for Dad.

It also meant that Dad needed supervision 24 hours per day, something I’ve heard said in reference to plans of care for others who are very ill but with a different meaning in practice.  In the vast majority of other situations when around-the-clock caretaking is called for, there is one blaring difference as opposed to our experience:  the person who is ill sleeps - sometimes just at night, sometimes in a cyclical pattern for a few hours at a time, and sometimes even more than usual with lots of naps during the day after a decent night’s sleep - and understands that he/she should not get up and try to do things beyond their physical capabilities.  That was not the case with my dad.  Not only did he not sleep much, but it was not safe to leave the room or even to get in a short catnap oneself unless someone else was watching over him.  He did not remember or realize that he couldn’t do the same things in the same way that he used to do, and he did not have the foresight or the patience to ask for help or to wait unless someone was right there with him to remind or cue him.  Many times one of us would turn around to do something or go one room away for a minute only to find Dad trying to get up or, worse, already up either with or without his walker, a risk we were not willing to take.  We felt it was our job to guard over him and to ward off whatever danger we could, and this included protecting him from himself. 

As far as I could tell, Dad liked having my sisters and/or me there with him while he was sick, but he was very dependent on Mom; he wanted her to be right with him at all times and often got upset or anxious when she wasn’t able to be there.  In a statement that tore out hearts out, he said that he thought that he might not be around much longer and that he didn't like it when she left because he was afraid he wouldn't be able to tell her goodbye if something happened.  When he said things like that, it seemed like he did have a grasp on what was happening, but then he would say something about going to work the next day that brought the questions about his comprehension and memory back into play.  

The changes that we DIDN’T see in Dad were the ones we had been assured would happen soon after the Avastin had been administered, but, besides the beginnings of improvements in sensation on some parts of his left arm, we were seeing ZERO of the good changes from the much-touted Magic Bullet.  

The third week in December was set to be a busy one for my family:  Dad had an MRI scheduled for that Tuesday and also wanted to go to a Healing Service at a church near my parents’ house that night.  Round Three of chemo/Avastin was scheduled on that Wednesday.  We had written these things down on the Dry Erase board along with notes about which of us would be there on which days and the therapy schedule, but it didn’t seem to help much at all.  Time and details were not sticking in Dad’s short-term memory, yet I think he knew these things were important and so he frequently asked about what was on the agenda for the week, the day, and even the next hour.  The questioning, the confusion, the anxiety, and the support that Dad needed were all just part of the whirlwind of activity that was going on around the clock at my parents’ house during this time.  

I was hanging onto to Hope and whatever else I could for the time being, but I couldn't help but feel that we were in the middle of the storm before the storm.  As one of my sisters said in an email about our situation at this point:  “If Dad could think/process/remember the way other non-brain cancer people can, we could talk to him more about his Bucket List and how long to continue treatment and all those other so important things.  I've been reading too many library books about terminal cancer and living life to the fullest, etc, etc.  I hate to think that Dad knows -- somehow subconsciously or something -- more than we do.  The MRI coming up is so freaking scary.”

Up Next ... Part 31 - Battling