Chapter One, Part 2: The Fabric of Our Lives

Not long after my youngest sister Nancy was born, my mom crocheted an afghan blanket that ended up being kept on the back of the couch in the den.  It was half decoration, half functional item, and it was part of the landscape of the various houses in which we lived over the course of the next twenty years or so.  The colors of the yarn in the blanket were those of popular décor back in the 1970’s, mostly different shades of browns.  Looking at the blanket, though, it was easy to spot the one color in the mix that really stood out, not because it took up the most space in the pattern but because it was the brightest, a brilliant shade of orange, like the tip of a flame in a campfire that has been burning for awhile. 

The orange in that blanket is like the sport of running has been in my family over the years, something that stood out amongst whatever else was happening at the time, a mainstay or maybe even a theme sorts.  Not everybody in my family is a runner, but everyone in the family knows about running and appreciates the talent and the dedication behind it, because of what we assimilated through my dad’s enthusiasm for it. 

My dad started running when he was in elementary school; he said that he liked to race the bus to his house after school.  In high school, he was a competitive middle-distance runner on his school’s track team, and he was awarded an athletic scholarship to Troy State (now Troy University) in Troy, Alabama, after graduation from high school.  He continued to excel as a runner through his tour in Vietnam, which started a year later, and then again as a college student on the GI Bill at Auburn University. 

After he graduated from college, my dad got a job with Cook Industries, a company for which he worked for the next ten years, a time during which the company required my dad and my family to move many times.  Through it all and in the decades that followed, my dad ran, for sport, for social reasons, and for health and fitness.  I heard him say many times that he loved to run because it made it feel better, because he got to meet all kinds of people and see all kinds of things through doing it, and because he liked to have a goal.  “Plus,” he almost always added with a smile, “That way I can drink a few beers without worrying about putting on weight!”

Dad called on me to join him as a runner when I was in the fourth grade.  I’d run laps around the track here and there while I was waiting for him to finish his workout a few times in the past as a young child, but it wasn’t until I was in late elementary school that he thought I was ready for an actual training program.  With the two of us in training, there were always smelly running clothes and shoes and endless bottles of Gatorade around the house.  As a family, our weekends began to center around road races in the area in which we ran; occasionally my sisters joined in the effort too with Mom backing us up as Head Cheerleader/Nurse/Logistics Manager. This continued throughout my middle school and high school years, and then, when I became more of a recreational runner during my college years, it extended to the running days of my sister Nancy, who was also competitive in cross-country and track during her time in high school. 

During this time, Dad was typically running in excess of 100 miles per week, often in training for a marathon or some other big race in which he was set to compete.  Sometimes we cheered him on from the sidelines as spectators, and sometimes we joined him in his running efforts, whether training for an event or running in a race, always with him running along with persistence and triumph etched into the expression his face and a can-do attitude that, in victory and in defeat, through challenges and transitions, eventually also became one of the strands of the fabric of our lives as a family.

Well Worth the Effort

Many mornings when I get up before the sun rises to see my daughter off to high school it reminds me of how I used to drag myself out of bed in the early morning on school days when I was her age.  I got up then, though, not because my school started really early like hers does, but because I had to get in a run before school when I was in the midst of a training season for track or cross-country. 

Early morning running with my dad

I’ve never been a morning person.  On most days, I get up because I have to, not because I want to at that particular time, and, truth be told, I hated getting up for those early morning runs.  It was always dark, and the temperature always seemed to be cooler than I preferred, even in the late spring or early fall months.  I was always a little stiff and often so tired at that time of day that I could hardly keep my eyes open as I ran down the street, guided by the streetlights, counting freshly thrown rolled-up newspapers in the driveways to pass the time as I went along.  Many afternoons or evenings when I ran, often for the second time in the same day, I did it because I loved it, but, on those mornings, I did it because my dad expected me to put in the extra effort.  It was part of the plan he had written out for me each week, the training program that he said would pay off at the next race, which, for me, was always just around the corner.  I loved the racing part, too, but not those morning runs – those I just struggled through.

I remember on so many occasions looking up as I crossed the finish line at the end of a race so that I could see the look on my dad’s face.  I judged my performance in each event by the look I saw in my dad’s eyes at the end of the race; in an instant, I could tell what he was thinking – and many times it was this: it was well worth the effort. 

I knew it then, and I know it even more now: there is such privilege that comes with knowing someone well enough to know what he or she is thinking, a secret code of which it is an honor to have an understanding.  I often think back to the few episodes of perhaps oddly placed confidence that I had when I was helping my dad during the weeks of his illness. One instance in particular occurred on the day my dad went from the hospital to a rehab facility across town. The hospital staff wanted to have him transported by ambulance, but I felt it was essential to his mental state not to have to ride in another ambulance at that juncture in his recovery. Somehow, from out of necessity I guess, I found the confidence to tell the nurses that I was certain I could safely help him get from a wheelchair to the car at the hospital and then from the car to the wheelchair and inside the rehab facility.  "I have no doubt I can keep him safe," I remember saying to a couple of nurses in the hallway outside his hospital room.  I felt like they were looking at me doubtfully, but they said ok and that was that.  I am trained in assisting with patient transfers like that, but I work with children, not adults.  I felt sure though; I knew I would do anything to help my dad, and I was confident that together our effort would pay off.

Doing whatever it takes, with both of us wearing the same expression of determination

There were a few more things that happened like that while he was sick, with my certainty coming from almost out of the blue, each time tied to the fact that I was completely determined to do whatever it took to help take care of my dad.  The most striking bout of unexplainable conviction that I experienced during his illness, though, was when he asked me how we would know what he wanted if he lost the ability to talk.

“I’ll just know,” I told him, somehow without missing a beat after he threw that question out into the room.  I cannot explain the sense of sureness I felt in the moment; looking back, I realize that it would have been much more reasonable for me to feel a sense of terror and uncertainty in the moment.  We were in the den of my parents’ house, the day after we’d brought him home from the hospital for the last time.  It was New Year’s Day, and my dad had not rebounded the way I’d thought he would once he was on his home turf.  He was still trying to eat to get his strength back, and he had been asking for small servings of food since he’d woken up that morning: “maybe a piece of bacon,” “some fruity dessert,” (which is what he called the cut-up pieces of fruit in a plastic bowl purchased from the produce section at the grocery store), and, the request always accompanied by a gesture of the quiet snapping of his fingers, “just a little piece of chocolate.” He’d asked for and had eaten a little of each, along with a sip of his favorite beer, Foster’s, which he drank through a straw while he sat up against the cranked-up mattress of the hospital bed in the middle of the den.  His voice was hoarse and breathy, and it seemed to be getting weaker as time went on despite the efforts of my dad to eat and take medicine that was supposed to make him feel better.

His concern about losing his ability to talk was legitimate, and I honestly don’t know the source of the confidence I heard in my own voice when I answered his question that day in the second-to-last verbal exchange I ever had with him.  I guess I would have to say it was an accolade of sorts for the extra time the rest of my family and I had been lucky enough to have with him over the weeks of his illness as we battled along with him.  I knew that if necessary, I would look at my dad and just know what he was thinking, just like those times many years ago when I crossed the finish line of a race. And again, it was well worth the effort.

No Answers - Part 3: Doctors and Death

Continued from No Answers - Part 2: Informed Consent

There are some questions that are probably commonly asked by people who are left behind after a person with a terminal illness dies, questions to which I realize there are likely to be no answers but that keep coming back to me nonetheless.  Some of these are centered around patient care; as a health care worker myself, I fully understand the difficulties of staffing shortages, paperwork demands, insurance issues, and the like.  But I also think that there are unfortunately some health care workers, including some doctors, who aren't really focused on the quality of their care.  

We came across some of those in my dad's case, and I will always remember them, just like I will never forget those who provided my dad and my family with outstanding care and compassion.  I just wonder if any of them will remember my dad.

I think there should be some kind of required continuing ed for  physicians, and maybe for nurses and some other health care workers too - especially those who frequently treat patients with catastrophic diagnoses - a training that could help them to realize (or to remind them) that patients are PEOPLE, not cases or numbers or statistics. I view much of what happened  in my dad's care as being a symptom of what's wrong with our health care system (and maybe even with our society) today: so often we just accept and often even continue to put on a pedestal the physicians who don't or can't take the time to stay on top of patient care as we FIGHT for treatment, for attention, for proper care. The utter lack of case management and the absolute lack of follow-through and follow-up are perhaps what disturb me the most about what went on during Dad's illness.

Here's something else I wonder about: how much - and what kind of - training is given to physicians, in particular to oncologists - about helping patients and their families deal with end-of-life decisions, and about coping with such matters themselves?  A thought that keeps coming back to me again and again is this: I know physicians take an oath to "do no harm," and yet in some cases those same doctors continue to prescribe aggressive treatments and fail to present hospice - or other types of palliative care - as an option, presumably based on the fact that those doctors assume the patients want to fight to the end.  How much of a doctor's own perspective is imposed on that of his patients?  Even the most well-meaning physician could feasibly become so emotionally attached to a patient that he forms an opinion based more than just medical knowledge about what choices that person should make, and that could easily impact the type or the amount of information he presents - or the way that he presents it - to the patient and the patient's family.

And so the question becomes - where does the "treatment" end and the "harm" begin?  When does the good (or the possibility of good) stop outweighing the bad, the awful side-effects and the risks??  It becomes a judgement call, one that can easily be made with emotion interlaced with the medical knowledge.  In fact, isn't that what we want in a doctor: someone who cares about us on a personal level??  And yet that very situation could affect our care by playing into how our doctor handles things on down the road.

I think this is particularly tricky in the case of an oncologist.  Cancer doctors are in the business of providing Hope to their patients.  Many of them spend more time per appointment with each patient than doctors in other specialty areas do, and they usually see their patients more often than other doctors do too.  As well, the subjects that are discussed within the walls of the rooms in the oncologist's office are very often much more emotional than the usual chit-chat that goes on in the offices of other doctors.  All of this leads to the establishment of more of a connection between an oncologist and his patients - again, not at all a bad thing, but something that must enter into the recommendations given about treatment, including end-of-life treatment issues.

In a situation with a terminal diagnosis, I know all too well how very hard to figure out the balance between hope/pushing forward and acceptance. The oncologists we dealt were only recommending aggressive treatment; looking back, I have to wonder if it was because they were full of hope/faith or if that was just their focus and their training. I know that some oncologists are better about that than what our experience was and that some try their best to keep a patient's overall well-being in mind rather than just trying to have a great case to write up in their medical journals. But still, when the patient is you or your loved one, you have to do two things: you have to have Hope, and you have to have faith that your oncologist is looking out for your best interests (and that he/she knows what those interests are).  What we found is that in a situation like ours Hope is linked to goals that peel off in layers like an onion - hope for a cure, hope for treatment that gives more quality time, home for comfort, hope for him to be pain-free and hope for peace.

As I said in the last post about informed consent, the options just weren't presented to us or to Dad; the oncologist originally told us that we would be taking Dad home from the hospital just a few days after brain surgery, but, at the urging of the hospital physical therapist who had seen Dad a total of one time, the doctor ordered that Dad go to rehab, where essentially Dad's care was managed for the most part by the Rehab Director, whom we later realized knew little to nothing about GBM and its treatment.  We saw the reasoning behind Dad's participation in a short-term rehab program; the way we looked at the treatment as opposed to a "just going to a beach" scenario was to picture my dad a little further down the road.  We hoped - and we believed - that Dad would improve which would make the rehab stay well worth the effort, and we knew that Dad would want to go "all in" until he couldn't.

At one point in looking back at what we decided on for my dad, I said that if I had to do it again I wouldn't have had him go to three weeks of rehab (because he didn't get better functionally during that time), but then my mom pointed out that if he hadn't gone, he wouldn't have  even had the chance to have gotten functionally better and we would probably always think it was because we didn't have him go. In other words, we would have linked the lack of quality of his life to our decision for him not to go to rehab, even though we learned through having him go that there wasn't a link or a possibility for him to gain more independence, based on his individual set of circumstances.

Another obstacle for physicians in caring for terminally-ill cancer patients has to do with the rules of hospice: in order to qualify for hospice, a cancer patient not only has to have a life expectancy of less than six months but also must agree to forego any further chemo treatments of a "curative" nature.  When you think about it, that isn't really fair, especially considering that patients with other terminal conditions aren't forced to stop their medications to enter into a hospice program.  I can see how it could be difficult for an oncologist to switch over from thinking "I am going to help this person beat the odds" to a mindset of comfort-care only.  I can see where an oncologist would keep wanting to offer more - a Plan B, and then a Plan C, and so on, offering Hope, if not for a cure then for improvement.  I can see where the concept of quality of life (what even is that for most terminally ill patients?) can be confusing.  Once the cancer has set in for good, there often isn't a whole lot of quality, especially if brutal treatments like some chemos are continued, and so it become a judgement call, which must be made based on the experience of the physician and, of course, on human emotion.

Consider this:  when a person goes to the doctor for a more run-of-the-mill illness, like a sinus infection or or a sprained ankle, the doctor doesn't give that person a choice as to whether or not he should be treated or as to what the treatment will be.  As long as there is a clear course of action in treating the condition, the doctor orders the treatment.  

In rarer cancers, and certainly in cancers that are being considered terminal, that changes.  The oncologist presents the patient and/or the patient's family with options and gives them the power (and the burden) to make a choice.  Sometimes the patient even finds out about treatment ideas on his own and presents those to the physician.  Once everything is on the table, though, inevitably the question that is asked of the oncologist is this: What would you do if this were you or your loved one?  And that's where the personal opinion and the emotion and the potentially-clouded judgement come in.  It's what we ask for at that point, because we have no idea what else to do.  We need to feel that we can trust someone, and we hope that that person can offer us some hope, in some form. Bargaining is in full play at that point in the disease process: if the patient can't be cured, if he or she cannot be granted more time, then of course we want them to be afforded comfort.  

About that question, the "what would you do" that every oncologist must get asked on a daily basis, I am here to tell you that no one can ever truly know what he or she would do in a given situation.  Even an oncologist who has dealt with countless sad situations can't accurately say how he would handle things if he or someone he loved were diagnosed with a terminal illness.  Each person, each situation, each relationship is different, and so none of us can predict with any degree of accuracy. (Click HERE to read the story of what happened in my dad's case, when he was so sick and not getting any better in the hospital, when I asked the oncologist what he would do if it were his father who was lying there in the bed, begging to be taken home.)

We can suppose, though, and we can ask for guidance, with the hope that given his experience the oncologist will have more knowledge about such matters than we do at that point.

That's what we wanted to happen with my dad; we expected the oncologist to bring up the subject of comfort care with us as an option when it started to look like the course of treatment that we had chosen might need to be reconsidered.  However, what actually occurred is that we guided the oncologist towards that thought in the process; he didn't guide us.  I have to say that it would have made a little more sense for the guy to avoid the subject of hospice if he had been involved in my dad's care for a long time and/or if he knew my dad on a personal level, but neither of those things were true.  In actuality, from my perspective, his not seeing the whole picture when we needed him to the most was because of one or two things - because he was too busy to be involved enough, or because he just wanted my dad to beat the odds so he could improve his own statistics.  

There it is.  I realize my perspective here is likely tainted with anger stemming from grief, but that's the honest truth of how I think things went in the end with the oncologist.  We were only presented with a minimum number of options in the beginning for Dad, and we weren't presented with any at the end, until we put forth the idea of hospice and comfort care.  I expected to be guided through that delicate process, and I'm not sure I'll ever recover from the shock that we weren't.