A Changed Form

It’s difficult to know what to do or say or even think on a day like today; how does one mark a milestone that they wish didn’t have to be?

Today marks three years since my dad went on ahead.  Three years – that seems so unbelievable.  There has been so much pain, and mourning, and missing him in that time.  There has been a lot of change, too, some for the better and some, well, probably not so much. 

Here's what I am working on at this point: living - and thinking - so as not to allow cancer or sadness or grief to rob me or my family of anything more.  Because what I have learned in this past year is that it's so important to see the good in the moments, even when the grief makes things look blurry. What I have been working on since I sat in this same place a year ago is finding ways to make sure I don't miss the good, the happy, the important moments, even as much as I miss my dad.

It would be so easy to fall into the habit of viewing things as a misfortune, an unfairness, or even a disaster; one thing I've learned for sure since my dad died is that getting a foothold on perspective doesn't always come naturally - it often takes work and effort.  For me, at this point, there are times when the grief is still really thick, but I can tell that it has changed form. I think so often that Dad would be shocked and probably even more disappointed than touched that there are those of us who are still so much in mourning; I know he would want those of us he loved and cared for to be happy. That thought pushes me to try to do better, to be better, to do my best, just as my dad pushed me to do so when he was physically on this earth.

And so, through effort and dedication, I continue to be transformed as time marches on, and so does my grief. Instead of leading me as it has, the grief mostly seems to accompany me these days, still present but in a changed form.  I find myself sometimes having to reach to feel him around me lately, which brings about a new type of fear and a new form of heartbreak.  I am able to say that I am happy and grateful in the midst of it all, though, even though when the tears and anger come as they still sometimes do, I miss Life for him - and I miss him more than I ever thought possible.

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.

Circling the Drain

One of the many things that caught me off-guard about the grief process is how completely exhausting it is.  At first, I thought my fatigue was the culmination of the sleeplessness that came from caring for a critically ill person who, as in our case, almost never slept.  My mom, my sisters, and I were so far in the red on sleep it would have been understandable if that alone caused us to sleep for a week solid after my dad went on ahead.

But in researching and in learning first-hand about the grief process, I've found that grief itself is a cause of exhaustion, both physical and emotional.  Grief is hard work, whether we realize it or not; it's taxing in so many ways and on so many levels, even while we are sleeping or doing routine things like showering or driving to work.  

Probably the most physically taxing thing I've ever done in my life, besides coping with grief, has been running a marathon. Each time I've done that, I've trained for months in advance, I've read about what I should be doing to make it to the finish line, I've put effort into visualizing myself completing the event, and I've been in very good condition going into the race.  None of those things were true going into my dad's illness or his death - or being plunged into the quicksand of grief that followed.  In fact, another thing I've realized that actually contributes to the fatigue and the sense of overwhelm is that, in grief, there is no finish line.  The emotions that come with grief may seem as if they are easier to take or even fading over time, but what's actually happening is that the person who is grieving is becoming more adept at tolerating the assault as they become more seasoned or even more hardened.  

For the first six months or so after my dad died, I tried my damnedest to dream about him; I felt (and still feel) such a desperate need to have any kind of contact with him.  I had a few dreams about him, which I wrote about here and here, but then I went quite awhile with nothing.  My conjuring powers were apparently shot, at least for that time period. What ended up happening after that instead was that I started dreaming that someone was trying to kill me, obviously a very disturbing and terrifying experience, one that easily reminded me - not so coincidentally - of how I felt in Real Life starting the second my dad got sick.

I've heard it said that dreams are often the mind's way of helping us to work through our troubles; I'm not sure that applies to this situation, though: I wanted to lose the feelings of powerlessness and terror and injustice, not to experience them again and again as I did each time a dream like that came to me.  I sometimes wonder if my brain was trying to desensitize me to that feeling - because, as I've learned from what happened with my dad - that's life, it's going to happen, and no amount of training or learning or otherwise preparing can actually help when things happen that cause the grief to bear down on us; I think the best we can do is to accept that it's going to happen and to have enough hope and faith that we will get through it, somehow.  

How It Feels

I didn't go into politics - or even business, for that matter - for a reason; one that, if you know me, you probably already know: I do not have a poker face.  I am not at all good at, as they say on Saturday Night Live, strategery.  I don't like office gossip or sneakiness or favorite-playing.  The way I prefer things to be in my work place is when, as my dad used to say, it is what it is - because what else would it be??

Unfortunately for me and for a whole lot of other people who live and/or work in the same school district I do, though, we have been involuntarily drawn into a situation over the past couple of years that has come to involve a lot of the undesirable aforementioned things.

As a result of the citizens of the city voting to give up their school district and the resulting imposed adoption of that system by the county school system, people in my area are talking about budgets and politics and outsourcing and other things that have regrettably become a very large part of the equation in public education.  One thing I haven't heard much talk about in meetings or in the media, though, is how it feels to have been swept into this maelstrom.

This has been the most difficult, most stressful year of my nineteen-year long career with the county school district.  I am proud of the efforts of many of my coworkers as we've entered into what can only accurately be described as a battle.  At times, I've felt sure that I want to do everything in my power to stay with the district, to continue the work I've started, and to try to control what I can in hopes of protecting my coworkers and friends - and ultimately, the students.  But, at other times, increasingly as the actual date of the change approaches, I feel as if I am in danger of going down with the ship.  Like a lot of my coworkers, my health and my personal life - and my overall happiness - have suffered a lot during this past school year because of the impending "merger" - a term, by the way, that really gets to a lot of us on the receiving end of the punches.  To merge means to join forces, to unite, or to team up, and to me that implies that an action is taking place between two roughly equal bodies, a situation which, in my opinion, this is not.  Always a fan of running metaphors, I liken what's going on here to a runner that has dropped out of a race who later asks an accomplished runner if he can train with the better runner.  One of them needs improvement; one doesn't.  One needs help; the other was fine on his own - and, in fact, is likely to be slowed down if the less skilled runner joins him on training runs, even though the faster runner may still be willing to take on the job of coaching the slower one.  It isn't a merger; it's more of an adoption.

In the district of people who did not get a vote in this decision, our leaders and our administrators are scared for their own jobs, for their livelihood actually, and it feels like there's an "every-man-for-himself" mentality that I have never before felt in this job.  Watching the process unfold in slow motion over the course of this school year has felt a bit like Chinese water torture, and in many ways I am glad to see the year come to a close, although I feel a distinct sadness at the same time that my job and this school system - both things that I have loved and have put my heart into since I was 25 years old - will certainly never be the same after end of this school year.  

Everybody knows that educators in this country generally don't make a lot of money.  They don't win Oscars or Pulitzer Prizes or get big raises or promotions or even get much recognition by their bosses or their "customers," unless, of course, a scandal of some sort is featured in the media.  The rewards we get come quietly and often only if we are looking hard for them, but most of us are lucky (and diligent) enough to see them, and we are glad to have this as our chosen career.  We realize that there is no other profession that would allow us to have such a part in shaping the minds of children in this way and to impact their future on such a personal level.  Teaching is about so much more than teaching - and I don't mean politics and jerrymandering and elbow-rubbing; it's about the power of relationships.  It's about the connection that can be made between one person and another person or between a person and a lesson, a link that can only be developed when the learner knows that the teacher cares about him or her.  When a mutual respect has formed between the teacher and the student, that's when the best kind of learning occurs.

But in an environment when educators are scared for their jobs, when school staff members know that they and/or their coworkers and friends may end up on the chopping block at any moment, when program cuts aren't a "maybe" but a "when," it's hard to be positive every day.  It's hard to focus on the lessons that need to be taught - and on the children who are the most important part of the equation.  From either side of the argument about what's fair or who deserves what from the limited funding available in the district now, one thing is for sure: teaching and learning have been hindered, and that doesn't feel good to any of us.

This is mostly a blog about grief and perspective, but I guess it's also about enduring and overcoming life's challenges, and I guess that's what has to be done in this situation as well.

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 

Off-Label Uses

Sometimes people use a medication or a health care product to help with things besides the ailment or condition that the product was intended to address.  This off-label use is often done out of necessity, when things recommended by health care professionals or others have not solved the problem.  It's more of a last resort, a whatever-it-takes type of effort, or sometimes just a belief in a wives' tale or a carrying on of tradition than a science project.

Vicks VapoRub ointment is one product that has been said to work for treating things other than what its label says it treats; a couple of its off-label uses are treating toenail fungus and repelling mosquitoes. 

Proctor & Gamble, the company that makes Vicks, has a disclaimer on their website that says their product "can be used for the treatment of cough associated with the common cold" but that they "haven't tested, nor has the FDA approved, Vicks VapoRub as a toenail fungus treatment" and, therefore, they say, it is not recommend for the treatment of toenail fungus.  I think there are lots of people, though, who swear that Vicks alleviates them of that condition.  Not having fungus-y toenails (yay for me!), I haven't ever tried using it for that, but I have tried it a couple of times for keeping mosquitoes away when I've run out of Off! and it seemed to work just fine for that.

One of my sisters has yet another off-label use for Vicks Vaporub: she puts a little bit of it under each of her eyes whenever she has trouble sleeping.  She's done that since she was a teenager; she says the fumes it gives off sting her eyes, which forces her to keep her eyes closed, which eventually causes her to get bored enough to go to sleep.  I don't see any kind of warning about that on the Vicks website, so I guess it's an ok thing to do, and, as anyone who has ever suffered (and I do mean suffered) from insomnia can attest, at a certain point in a sleepless night, it's anything goes/whatever works to provide a little shut-eye before the sun comes up.

When I was running competitively a lot in high school, I sometimes tried to emulate some of the rituals that my dad had surrounding his running routine. One thing he did that I started imitating then was taking a couple of swigs out of the bottle of Mylanta that we kept on the door of the fridge as soon as I came in from a strenuous run.  I didn't know why he did it; I just did it because he did.  Many years later, I happened to think about how we used to do that, and I asked him why he did it back then.  "When you run hard, most of your blood goes to your arms and legs instead of to organs like your stomach, and so a hard run can make you feel sick to your stomach, and Mylanta helps with that," he told me.  I kind of half-laughed and asked him he'd ever tried any other remedies for the same problem, and he said, "Well, I guess I've tried beer, but I'm not sure if that helped my stomach or if it just tasted so good after a hard run that I didn't care if my stomach hurt."

I don't think the company that makes Mylanta has looked into billing it as a special after-workout remedy for runners, but maybe they should.  I know of another off-label use for it that they could advertise, too: when my oldest child was a baby, I worked in a nursing home, and one of the residents there told me that I should try using a liquid antacid like Mylanta to treat diaper rash.  "Just put some on a cotton ball and dab it on the rash," she told me.  Later, when I tried it, I found out that it worked better than any diaper-rash ointment I'd tried.  I ended up telling a friend of mine who was also a new parent about it; luckily, she asked me for clarification of how it should be used before she tried it because she later told me that she first thought I'd meant that an oral dose of it should be given to the baby. 

One thing that has surprised me about the process of grief has been the way the emotional pain often flows over into physical pain, and one way that that has occurred for me has been in the form of back pain.  Before I'd really realized what was causing the pain that plagued me night and day, I had been attributing the pain to poor posture or just to having slept  wrong, and I tried the usual treatments - ice, heat, stretching, pills, chiropractic.  Nothing worked, at least not for very long.  Finally, after reading about the grief process, I came to the conclusion that my sorrow and the other emotions tied up with the whole process had sort of settled into the joints and the muscles affecting my back, and I told myself that, like a lot of the intense emotional pain I was feeling at the time, I just had to ride it out until it got better on its own in time. In the meantime, though, especially at night, I ended up calling on my old running training buddy, Icy Hot.  The weird first cold-then hot numbing action it has helped me to relax; some nights it was the only thing that allowed me to go to sleep, essentially making it yet another product with an off-label use, this time to curb the often almost-debilitating pain of raw grief.

No Answers - Part 2: Informed Consent

Continued from No Answers - Part 1: The Oncologist

Besides the unresolved issues on my mind from when my dad
was sick that relate to the oncologist on Dad's case, another
thing that concerns me is the way that informed consent was 
handled when Dad was in the hospital.

Informed consent is the process by which a fully informed patient participates in making decisions about his own health care. It originates from the legal and ethical right the patient has to direct what happens to his body and from the ethical duty of the physician to involve the patient in the management of the patient's own health care through educating him about his condition and any proposed treatments as well as reasonable alternatives and the reasoning behind the physician's recommendation.  It also includes informing the patient of the risks and benefits of the suggested course of action and any other possible decisions after which the patient can use that information to either accept or decline the treatment.  

In cases when the patient is deemed unable to participate in this process, another person can be appointed to serve as proxy through a medical power of attorney or other legal process.  

When it became clear that my dad was not consistently oriented (i.e. he was confused about certain things) upon hospital admission, informed consent fell to my mom on his behalf.  According to the definition of informed consent, this meant that she was to be educated about Dad's condition and of the options for treatment and the advantages and disadvantages of each.  This is basic Medical Ethics 101, a process of which any physician - and certainly any surgeon - should be extremely aware.

This is where my question comes in:  Why was that process not followed?  

At admission, a neurosurgeon was assigned to my dad's case, and right away he started saying that a specific type of surgery called "debulking" needed to occur just as soon as Dad was stabilized seizure-wise.  We were never given any choice of neurosurgeon, and no alternatives to this procedure were ever presented to us.

Prior to the surgery, my mom, serving as Dad's medical power of attorney, was directed to sign the consent form that listed all the risks, but really she didn't have a choice in the matter - what was she going to do: not give the consent when we'd been told he needed the surgery to save his life??  We were 100% given the impression that the neurosurgeon on the case was the only option we had for whatever reason and that, without that surgery at that time, he would die, right then.

Later I learned that was not necessarily true.  The surgery 

could possibly have been delayed or maybe even avoided 

with no change in prognosis.  [When we met with the team of top neuro-oncologists at Duke later, we learned that the aggressive growth pattern of GBM meant that it doubled in size every three weeks and that, because of the time required for recovery after surgery before treatment could be started, since the surgery the remaining portion of the tumor had grown to almost half of what the size of the tumor was originally.  In fact, the Duke doctors said they felt there had been "very little surgical benefit" for Dad.] 

I know now that there were other surgical and non-surgical options that should have at least been discussed with us, if only to explain why they might not have been recommended by that particular neurosurgeon in my dad's case.  Because they weren't even mentioned, though, I don't know if they were viable options or not.  At that point, though, we didn't know there were any other choices and we weren't told any differently, and so we just went with what was presented to us as the only course of action.  And so I am left to wonder - why didn't the surgeon even consider trying other techniques that are frequently discussed as a treatment for brain cancer, those that are showing evidence as giving a better surgical and prognostic outcome - things like intraoperative stimulation mapping and Gamma Knife radiation?  Why didn't he bring up the option of delaying surgery to investigate the use of gliadel wafers (which are implanted to deliver medicine right at the tumor site) or to look at the possibility of taking a sample of the tumor for use either for testing to see if the cells were chemo-resistant or for an dendritic cell tumor vaccine?  

Back then, though, we didn't even know what questions to ask, or even that we should be asking questions.  We didn't think about getting a second opinion or doing a background check of any kind on the neurosurgeon, at least partially because we were told that time was of the essence.  I think we assumed that particular neurosurgeon was the best at that hospital or at least that he was the neurosurgeon with the first opening in his surgical schedule.  It seems crazy to me now when I think that I never asked how many of that type of surgery that neurosurgeon had done or how many patients with that same diagnosis were treated in that hospital per year.  [I later asked a nurse on the oncology floor how often they saw GBM patients there, and she said once or twice a year.]  I remember all too well that we were in such a state of shock and panic and so frantic to try to take care of and to protect Dad that we didn't have time to research things.  We just trusted the advice we were given and forged ahead.

These days, I have a note in my cell phone that lists things I want to remember if I am ever in a similar situation (Is that doomsday thinking or preparedness??  I'm not sure.).  It includes these statements:

*When a doctor (or other medical staff member) makes a recommendation, ask what else they considered or could have considered and WHY they came to the conclusion that they should recommend that specific thing.
*When making a decision as to whom (or to where) to turn for care, directly ask WHAT MAKES YOU DIFFERENT FROM OTHER DOCTORS (or what sets this facility or service apart?)? 
*ALWAYS ask what that person's (or that facility's) experience with that diagnosis, that surgical procedure, etc. is SPECIFICALLY, termed in frequencies and outcomes.

In my dad's case, though, without a doubt, we did what we knew to do.  The rest just wasn't something a person would know in everyday life.  Was the right choice made?  Yes, based on the options we were given at the time.  What would we have done, if we knew then what we know now??  Of course I will never know, nor would I if we had been presented with all of the possible choices and then given the opportunity to select one.  But at least in the "fully informed" scenario, we would not feel as if there were facts we weren't told or options that weren't considered.  Today, in the midst of my grief, I certainly don't feel that there was any effort at all by the medical team to try to individualize Dad's treatment, and I am left to wonder why we were only given certain information.  Did the medical team actually feel as if it were our responsibility to do the research and then to ask questions about the other possible treatments?  Did they have such as strong opinion about what the best course of action was that they didn't tell us what else could have been done?  Did they think we were somehow incapable of understanding the more complex information about other options?  Did they think we (or Dad) weren't deserving of knowing about those alternatives?  Did they themselves not know what else was available?  Did they lack the training in performing the other techniques?  Chalk that up to the list of things we will never really know.