Thursday, November 6, 2014

The Right to Die

This is a follow-up to the previous post, Without a Sound:

There’s a lot that bothers me about the handling of the news about Brittany Maynard, the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).  Probably the thing that disturbs me the most is the confident way that so many people have commented on her story and her decisions, as if they have any idea what has really been going on behind closed doors in her life.

As someone who was there on the scene for most of the 75 days between my dad’s diagnosis of GBM and his death, I feel like I have a fairly good idea what was going on, but I also know as a result of my experience that there are some things – even in highly publicized cases like hers – that anyone on the fringe or further out cannot know, and that’s the way it should be.  Health issues are private and personal.  The fact of the matter is that even with as healthy as Brittany looked when her image appeared in the news just days before her death we don’t know what the cancer inside her brain was doing to her, and we don’t know the intricacies of her diagnosis or prognosis.

Another thing that disturbs me is the way the media has portrayed Brittany as a hero, as if she was a crusader of sorts because of a personal choice she made to make another personal choice public.  To me, it seem like this implies that a person who does not make the same choices that she made is not as important or as courageous.  I'm glad that Brittany and her family had the opportunity to make the choices that they made, but I also think that people in other situations need an equal amount of respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.

The tricky thing about commenting on such an emotionally charged topic is that logic often takes a back seat in such a situation, as does respect for the views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I see the irony in producing commentary about the error I think others are making by commenting about the case.  The potential for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge; this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get past the hypocrisy of saying "Shame on you for shaming someone else" or the irony of judging someone for being judgmental.

Here’s a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.  My dad had a Bucket List too, but he wasn’t able to get to any of the items on his agenda because of what GBM took from him from the moment the condition revealed itself.  I also felt jealous that Brittany’s medical team seemed to have communicated with her clearly about her options … or maybe she was just more able to figure out what her options were because the cancer in her brain hadn’t impaired that cognitive skill in her … yet.

My dad’s doctors, especially his oncologist, didn’t seem to have an accurate view of what was happening when he went into a downward spiral.  It seems like an oncologist would be much better attuned to medical facts so as not to succumb to the attraction of denial, but that was not the situation in my dad’s case.

I honestly don’t know what my dad would have done had we had all of the facts, had he been able to adequately process things, and had he had an opportunity to make a choice that would not put his family in jeopardy in any way.  I know that it would have been nice to have someone – anyone – ask him, or us, about his priorities.  The medical team was evidently too rushed, too uneducated, or too something to think to ask him, and we didn’t know to ask (or what to ask or how to ask it) or to speak up on his behalf until the very end.

As I've said and written about, the diagnosis of brain cancer, especially GBM, is particularly devastating for many reasons.  As a result of the attention brought to GBM by Brittany’s case, NBC news wrote an article about the unique challenges with brain cancer:

The neuro-oncologist who called me to announce that my dad’s case had been accepted by Duke University is quoted in the article:  Brain tumors,” he says, “particularly but not exclusively the malignant ones … are in such an eloquent area of the body that surgical intervention may not be possible and other interventions such as radiation therapy may come with a fierce price. Yet another thing I wish I wasn’t in a position to have to know truth of.

Recurrence of GBM, the article says, is inevitable, at least as the treatment options now stand.  As I wrote about in the last post, this is especially true in certain variations of GBM. 

Another thing that bothers me about the coverage of Brittany’s story is the overuse of the phrase “death with dignity.”  Maybe it’s just a weird point of sensitivity of mine, but I don’t like the fact that that phrase seems to imply that there is no dignity in making a different choice – or in not having a choice – about the specifics of an impending death.  That feels like a really sick kind of competitiveness: who did death better???  Even the phrase “the right to die” seems muddled to me: I’m pretty sure that dying is a natural process rooted in science, not a “right.”  I think better terminology is “to hasten the end of one’s life” or something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.

We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the news of the prognosis and the path she would likely have to travel were delivered.  In an instant, though, her choices - and life as she knew it - were stripped away.  I think, like a lot of people with terminal diagnoses who consider “physician-assisted suicide,” that she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.  If you’ve ever seen someone have a seizure, if you’ve ever seen the terror and confusion in the eyes of someone who is aware that their own mental state is impaired, or if you’ve ever seen the look of humiliation and angst on the face of an adult who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling.  If you love a person who is having to endure things like this, plus a significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then there’s a chance that maybe you can relate to what it’s like to feel such a desperate need to try to establish order and control. 

I wish I could say that I can’t imagine what it took for Brittany’s family to support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen happened; it’s a different kind of horror, I would imagine, than what my dad and my family experienced – but, I would guess, the same kind of love.

 This is a song that my dad loved, played by a musician named
Bernard Stanley"Acker" Bilk who died earlier this week. 

Tuesday, November 4, 2014

Without a Sound

 When a glass or a ceramic plate is dropped, it makes a loud noise as it crashes on the ground.  When a window shatters, a figurine falls off a shelf, or a picture falls off the wall, it makes a noise.  Why not, then, a heart when it breaks?  It doesn’t seem right that something so devastating, so life changing, can occur without a sound.   

A lot of people have asked me over the past few days what my thoughts are about what happened with Brittany Maynard, the 29 year-old woman who is being referred to as the face of “Death with Dignity” after she chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).

GBM is something about which I, unfortunately, have personal experience and knowledge, as it is same diagnosis that my dad had.  I am not a physician, but I will do my best to provide accurate and relevant information about this diagnosis below as I think it’s important to know the facts about this diagnosis before jumping into the arena of discussion about Brittany’s case:

GBM is a primary brain cancer, which means it originates in the cells of the brain, as opposed to a secondary brain cancer, which begins elsewhere in the body and then spreads – or metastasizes - to the brain.  Of the many different kinds of primary brain cancers, all of which are rare, GBM is the most common … and the most aggressive in adult humans.   It is considered to be incurable, and, in the vast majority of cases diagnosed in the U.S., survival after diagnosis is less than two years.  The average life expectancy for an adult diagnosed with GBM is 14 months, and, as my family discovered when my dad died only ten weeks after his diagnosis, sometimes even that is too much to hope for. 

When a mass in the brain is discovered by a scan and a biopsy of the tumor is taken and analyzed in the lab, there are two things the pathologist looks at: 
  • the type of brain cell from which the tissue came, which gives the tumor a name like GBM
  • the speed at which the cells are dividing, which results in an assignment of a grade for the tumor, such as Grade III [3] or Grade IV [4].  In general, Grade I means that the tumor tissue is “low grade,” or very slow-growing, whereas Grade IV indicates that the tumor is growing at a very aggressive rate. 

To make things even more confusing for most of us, although Glioblastoma Multiforme is a primary type of cancer, there are two types of glioblastomas, the first of which is called “Primary, or de novo, GBM.”  This kind is the most common form of glioblastoma and is highly aggressive from the moment of discovery.  The second type of GBM (misleadingly also classified as a primary brain cancer) is called Secondary GBM; this kind begins as a lower grade tumor and then as it develops gets "upgraded" eventually into a GBM. Secondary GBM tumors have a longer, relatively slower growth pattern – but they are still considered to be very aggressive in that they are very difficult to treat.  This type of brain cancer, which accounts for about 10% of all GBM’s, tends to be found in people 45 and younger.

In the words of the neurosurgeon who handed down the news of the cancer to my family: “All GBM’s are Grade IV.”

Some reports in the media about Brittany Maynard’s case seem to be confusing two different parts of the pathology, though: Tumor grade is not the same as the stage of a cancer. Cancer stage refers to the size and/or extent of the original tumor and whether or not cancer cells have spread to other sites. Cancer stage is based on factors such as the location of the tumor at the time of diagnosis, the size of the tumor, and the number of tumors (or "tendrils") present. There are even more scales of different types used for determining the grade and/or stage of certain types of cancers like pancreatic: suffice to say that there is so much information about cancer in general that it's not difficult to see why there is a lack of awareness - and some confusion - amongst the media and the general public.  In fact, the same goes for the medical community: as far as I know, except for the oncologist and a few nurses on the oncology floor of the hospital ... and maybe the neurosurgeon, the majority of the medical professionals that treated my dad knew little to nothing about GBM. Unfortunately, I don't think this was atypical; not long ago I went to a doctor as a new patient for a check-up and, when she asked me about my family history, of course I told her about my dad's diagnosis of GBM.  "Was he sick for a long time?" she asked me, and when I told her no, that he was in great shape, in fact he was in training for a triathlon, she responded, "Oh, so he probably caught the parasite from swimming in a lake?"  Um, no, GBM is not a parasite, I told her.  But I digress ...

GBM tumors can occur in any area of the brain but are most often found in the frontal and temporal lobes [My dad’s tumor was in his right parietal/temporal lobes].  One characteristic of GBM is that these tumors tend to be infiltrative, meaning they spread into other parts of the brain (usually very quickly).  I remember the neurosurgeon explaining to us that GBM tumors, unlike most tumors that have smooth edges, have irregular borders – and then for effect he held up his left arm with his elbow at a 90 degree angle so that his left hand was dangling down in the air, and then he used his right hand to point to the fingers of his left which he said were very similar to the multiple “tendrils of tumor” in my dad’s brain, “finger-like projections, if you will,” he said. 

As the neurosurgeon also informed us on the day of my dad's diagnosis, although GBM can spread throughout the central nervous system (the brain and the spinal cord), it almost never spreads to other areas of the body.  

What the doctor didn’t tell us – what no medical professional did – but what I discovered through spending a lot of time researching on my own is that there are certain “prognostic indicators” with GBM, essentially things that speed up the ticking time bomb, shortening the already shortened life even faster: there are a few that did not apply to my dad like pre-existing health conditions and lack of family support – and at least one that did, which was the surgical removal of more than 95% of the tumor [called "the extent of tumor residual"].  One other factor that affects prognosis, one which we never got the chance to find out about in my dad’s case, is a genetic mutation that involves a gene called the MGMT gene.  People with GBM who have had their MGMT gene shut off by a process called methylation have prolonged survival rates. Unfortunately, as in my dad’s case, testing for this gene is not automatically done at all medical centers, and so many people (as occurred in our case) cannot use this as a piece of information for treatment planning or the end-of-life decision-making process.

It is important to be aware that not all GBM’s have the same biologic abnormalities, which is likely the reason that different patients respond differently to the same treatment. And so, even with the amount of information in the media about Brittany's medical condition, there are some things to which the general public is not privy, and some of those things probably affected her prognosis.

Although this information may seem boring or irrelevant to most people, I feel it is important to have access to it when considering Brittany Maynard’s case.  The other thing that I think it’s important to know is that, unless you have been intimately involved in caring for someone with GBM, there will always be certain things that you don’t know - things that may make the choices of Brittany and others look different to you.  As I’ve said before, GBM is a different beast from other cancers, even when those cancers have spread to the brain. 

In the next post, I will try to express my thoughts about some of things that have been discussed about Brittany’s case. 

Thursday, October 30, 2014

One More To Go

I can only think of a few times in my life that I witnessed my dad reacting to a situation in fury: one of those times was on Halloween night when I was about 11 years old.  

That night, for the first time, my parents had allowed me to go trick-or-treating with my friends, without an adult.  When we had knocked on enough doors to fill our pillowcases with enough candy that we were ready to call it a night, we went back to my friend Curt's house about a quarter of a mile away from my house, and then we all left from there to go home for the night.

I think some kids' parents picked them up and other kids walked or rode their bikes in a different direction than the way I went.  I hopped on my bike and headed off toward my house under the patchy beams of the streetlights. When I was about eight houses away from my own, I saw my dog trotting towards me; when she saw me, she turned and ran alongside my bike.  We continued along that way until suddenly from out of the shadows came two people wearing costumes and masks.  Both had a can of shaving cream, which they squirted into their hands and threw at my dog and me, chasing after us and doing the same thing over and over again until both my dog and I were covered in soapy foam.

By the time we'd made it to my driveway, I was crying, both out of shock and anger and because the shaving cream that was running into my eyes was stinging.  My dad was in the kitchen when I came in.  He looked up and saw me crying, and I saw his jaw clench as he stood up.  After I had told him what had happened, he told my mom to get a towel for me and my dog, and then he stepped outside and slammed the door behind him.  I wasn't sure what he was planning to do: it wasn't too often that he saw me crying or that he slammed a door like that.

I was still trying to get the shaving cream out of my hair a little bit later when the front doorbell rang.  When my mom and I answered the door, we saw two boys standing on the front porch just in front of my dad. After they sheepishly looked in my direction and told me they were sorry, my dad quietly said, "You still have one more to go" and then he marched them around to the side of the house and my mom and I heard them apologize to my dog.

I'm not sure what has made this event stick out in my memory for so many years: it wasn't the first time that I had seen my dad stick up for someone who needed help, and it wasn't the last.  It was one of a handful of times that I can remember him jumping in and fighting a battle for me, though, instead of encouraging me to handle it myself, and, although I don't think I ever told him, I appreciated the way he handled it because it somehow didn't leave me feeling ashamed or afraid.  

The good old days, when kids created their own costumes out of old clothes and scraps of material - or, as in my sister Nancy's case, they just wore their superhero underwear

Wednesday, October 22, 2014

Finding My Way

Four years ago today, I was presenting - for the first time in my career - at a national conference.  I had spent the first part of the week with my family at my sister’s family’s house in California and had flown from there to Minneapolis to go to the conference.  My husband and my daughters had taken a flight from L.A. back home where I planned to meet them in a few days after the conference had ended.

Things were humming along.  I actually remember walking out the door of my house to leave on the trip to go to L.A.; I wouldn’t normally remember something like that from years ago, but there were two things that have made that memory stick in my head.  I remember feeling a little more jittery than I typically do when I leave to go out of town, because this time I was traveling in a triangular pattern, first for pleasure and then for business, and I was nervous that I was forgetting something that I would need on the trip.  The second reason that I still remember leaving my house that day four years ago is that I got a concerning text message from my dad just as I was getting into the car to go to the airport.  As it turned out, that was the last text that I ever got from him - but that's not why I thought the text was important at the time I received my dad's message.

When I heard the ding on my phone indicating that I’d gotten a text, I grabbed my cell phone out of my purse so I could read the message as my husband drove to the airport.  “Met with grandmom’s dr to sign hospice papers.  Hope the girls take news ok,” Dad had typed in his typical shorthand form of texting.   As usual, I was able to read between the lines to understand what he meant despite the somewhat cryptic qualities of his message: At the age of 90, my grandmother (his mother) had been very ill for over two years. My parents had just met with her doctor to discuss her plan of care because of health problems she had been experiencing.  She had been moved into a nursing home a couple of years before due to significant cognitive decline, and at that point she had severe swallowing problems and progressing overall physical weakness.  In the meeting, I found out later, my parents had been told that her condition was continuing to worsen and that she likely only had a few weeks left to live.  My dad, acting as her representative for medical power of attorney, agreed that adding hospice services to supplement the care she was getting in the skilled nursing facility was in her best interest.  As his message conveyed, he was concerned about how my daughters and the other grandchildren would take the news of Grandmom's worsening condition.

Although I could tell what he meant by what he had written, what I realized I didn’t know as I processed the news was how he felt.  Like his mother, my dad was never very touchy-feely; there were many occasions in my life that I witnessed him keeping a stiff upper lip so as not to show his emotions and several other times when it seemed like he was just more of the mindset of “Let’s get this over with” than “Let’s think it over and share how we feel about it.”  As he liked to say: “It is what it is … because what else would it be?  But on this day, as my husband drove down the interstate, I felt like I needed to somehow acknowledge the emotions I thought it was safe to guess that he was experiencing, and so I texted back, “You are a good son.  Your mom knows that you love her, and you are doing all the right things to care for her.”  I don’t know why I chose those words or even why I decided to say something that sentimental to him at that time; it isn’t usually how we communicated, and that’s why that moment sticks in my head.  Well, that, and the fact that, as I realized later, in what seemed like such an ordinary instant when I walked out of my house and closed the door behind me that day, I was stepping into a life so different from the way I had known it to be.

When I was about ten years old, my dad entered me into one of the first road races I had entered as a runner, and, for reasons that escape me now, it was one of the few times in my running career that I ran in a road race in which he didn’t also run. 

Like many of the races I participated in during my childhood, this one took place in a small town in Mississippi.  In my mind, the scene at the starting line that day blurs into the hundreds of other scenes like it, but what happened over the next hour stands out as a memory all of its own.  In this race, to my surprise, I found myself in a small group of runners that had broken away from the rest of the field about at the first mile marker.  Or, I should say, about at the point where I thought the first mile marker should have been.  For the first seven or eight minutes of the race, there was silence amongst the four other runners and me except for the sound of our breathing as we ran.  Gradually, each of us realized that we had probably covered a distance of more than a mile, and one of the other runners asked if the rest of us were sure that we were going the right way.  None of us were; we had counted on being able to follow signs or directions given by volunteers along the way so that we would know when we had passed each of the mile marks and where to turn on the course.  As we found out later, though, we'd passed by the first turn faster than the race director had expected, and so there was nothing/no one there to tell us to make the turn and we had continued to run straight down the street.  By the time we realized that we were probably off the course, we were well over a mile past that place where we should have changed direction.  We kept running and eventually saw an old man watering his front lawn, at which point we slowed to a jog and one of the other runners shouted to him, “How do we get back to the community center?” which is where the race finished.  The man looked at us like we were crazy and then pointed back over his shoulder in almost the opposite direction from the way we were running.  For some reason, the five of us still didn’t stop running; without speaking, we all hung a right at the next street corner to head in the direction the man had indicated, and eventually we found our way to the finish line.

Since October 23, 2010, the day when the cancer in my dad’s brain was discovered, in many ways I have felt like I did out there on the course in that race so many years ago: lost, confused, exhausted, and in a state of disbelief as to how the whole thing even happened.  But, also like my experience in that race, I am comforted by the fact that I am not having to cover the distance by myself, and somehow that gives me the strength I need to continue along the course.

And that, I guess, is one way that I have changed, in increments over the past few years: I have come to see and to believe that it is human tendency to adjust despite pain and loss – and that resilience is born of character and nurtured by love and connection.