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:

Why Brain Cancer is So Lethal

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. 

Measuring the Course

As far back as I can remember, one of my dad's routines after he got home from a long run was to immediately jump into the car to drive the route he had run to measure the exact distance of the course.  (This was WAY before GPS systems existed.) Most people would probably choose to sit down to rest as soon as they could after a strenuous workout, but Dad was the kind of person who couldn't stand to let grass grow under his feet.  He taught us to have honor and priorities, to set goals, to set our mind to doing things and then to follow through. WAY before Nike said it, he used to say “Just Do It” whenever he heard someone make an excuse for not doing something they should have been doing; I remember so many tough runs when he would tell me to tuck in behind him so that he could block the wind for me after he'd said “Put your head down and let's just do it.”

If Dad could have “driven the course” at the end of his life, if he could have had the opportunity to examine what he had done and the choices that he had made along the way – I wonder to what he would’ve made adjustments.  Not much, I would venture to guess, and I think that’s pretty damn remarkable.  I'm not sure there are many people in this world who would be able to say the same.

Here's a question with some Food for Thought: What would your biggest regret be if today was your last day of life, and how can you attempt to right that regret?

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last few weeks or months of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, and later she put her observations into a book called The Top Five Regrets of the Dying.  Ware writes of the clarity of vision that people often acquire towards the end of their lives and of how others can learn from their wisdom. "When questioned about any regrets they had or anything they would do differently," she says, "common themes surfaced again and again."

Here are the top five end-of-life regrets, according to Ware:

"I wish I'd had the courage to live a life true to myself, not the life others expected of me."  Looking back over the course of their lives (measuring the course), people often recognize that certain dreams they've had that have not been fulfilled, making this the most common regret of the dying.  And, as we learned when my dad got sick, by the time a person realizes that he needs to hurry to try to realize those remaining dreams, his health (and sometimes other obstacles) often restricts those goals from being attainable.

"I wish I didn't work so hard." Ware says that this was a regret shared by every male patient she cared for (and some of the women too).  What they wished they had done instead of staying late at the office so many times was to have gone to their children's ball games or school programs or to have spent more time with their spouse or other loved ones.  

"I wish I'd had the courage to express my feelings."  Ware says that many people reported that they had suppressed their emotions in order to keep peace with others.  They regretted not having told someone that they were angry with them - or that they loved them.  Sometimes this is a regret that can be addressed in the final stages of life, but many times the years that have passed since the issue began make it impossible to right on down the road.

"I wish I had stayed in touch with my friends."  In the midst of our hectic daily lives, it's easy to lose track of people who have meant so much to you and whose impact you may not realize until it's too late.  Again, sometimes when the person who is dying expresses this regret, loved ones from the past can be contacted, but many times it isn't possible.  

"I wish that I had let myself be happier."   The realization that death is near can give a person new perspective on things, and one of the things that is commonly realized is that happiness is a choice.  The clarity that often comes at this stage of life helps people to see the good in their lives much more clearly than they did before.  Other things like material goods no longer seem important.  People do want to get their financial affairs in order if possible, but it is not money or status that hold true value for them as they near the finish line - it's love, both given and received.  

No Answers - Part 1: The Oncologist

There are some thoughts - the what-if's, why's and why not's,  the should have/could have/would have type of thoughts - that are probably common amongst people who are left behind after a person with a terminal illness dies.  

One thing in that realm that bothers me a lot is the way things were handled by the medical team involved with my dad's case - and that branches off into lots of other questions linked to the health care system in general.  I know there are not going to be answers to these questions, but I feel like I have to get them off my chest anyway.  So I'm going to start with the unresolved issues that relate to the oncologist...

As I've stated, I really liked the oncologist on Dad's case at first; like a lot of other people, I sometimes look for "signs" along the way to reassure myself that I am on the right track when I have to make a tough decision.  I thought we were doing the right thing by choosing that doctor to head up Dad's case, in part because I thought maybe it was a "sign" that he had gone to medical school where I live but he had done his undergrad work at the college that was my daughter's first pick.  (How freaking ridiculous is that?  That's like putting your life in someone's hands because they have the same favorite color as you!)  I got a "good vibe" from the guy the first time I met him; I felt like he was down-to-earth, unlike the asshole neurosurgeon who had been assigned to Dad's case, and I felt like he understood not just that we viewed my dad's case as a unique one but also why we did -  and I thought that meant that he would see it in the same way we did (translation: I thought he would do whatever it took to help my dad, just as I was ready to do).  

At our first appointment with the oncologist, I asked him directly if he would bring up the subject of hospice with us when it was time.  Like pretty much everyone who walks through the door of an oncologist's office for the first time, I had only limited knowledge about cancer in general, and obviously I didn't know much about brain cancer or the treatment for that specifically.  It's terrifying to be in a position to have to put such blind faith in someone you don't know at all, but you have to trust someone - and so that's what we did.  

I will never forget the scene in the awful little room off to the side of the hospital waiting room where, hours after Dad's surgery had been completed, the neurosurgeon imparted the most devastating news possible to my family and me about Dad's diagnosis and his prognosis.  As soon as he finished talking, I bombarded him with questions that I thought would influence what he had just said; as things were spinning completely out of control, I was desperate for control of something.  When I got to the end of my list of questions, I pledged out loud that we would fight the cancer tooth and nail, because that's what I wanted and that's what I thought dad did too.

Fourteen years ago, my sister gave birth to her first child, a daughter who is very healthy today but who was born early with some medical problems that necessitated an extended stay in the Neonatal ICU for the first few weeks of her life.  Various family members traveled to the city where she was hospitalized during those weeks, taking turns being there with her and with her parents.  One family member per night was allowed to stay in a family room near the NICU at the hospital.  One night, my dad volunteered to stay so my sister and her husband could get some sleep.  As I heard the story told later, at some point late that night my niece's condition became very critical, and a nurse dashed across the hall to ask my dad if heroic efforts should be used.  As my dad later told it, without hesitation he said, "We choose to fight." And with that, the medical team pulled out all the stops, saving my niece's life.  

Fast-forward a dozen years later, and it was my dad who was critically ill, and it was us who were being asked if heroic measures should be taken.  We all thought back to the story that had been told many times about Dad's proclamation on my niece's behalf when she was so sick, and we knew that Dad wanted to fight.  Never for a minute in the days after he was diagnosed did I consider that he might want to forego treatment, even knowing that the treatment would not be easy.  

And so at our first appointment with the oncologist, after he vowed that he would give us his honest assessment of when he thought we should move towards comfort care instead of moving along a restorative path, we discussed an aggressive course of action to treat GBM.  When we left there that day, I felt good about what we had talked about; I felt like we had a good set of facts and a plan of attack.

Looking back, though, I'm not sure the oncologist presented us with all the facts or all the options; I think he guided us towards the treatment that he was most interested in and/or most knowledgeable about when it came to brain cancer.  He said, when I asked him, that he was currently only treating one other patient with that same kind of cancer.  I didn't ask him how old that patient was, how much of the tumor the surgeon were able to remove, or anything else except what the treatment was that seemed to be working for the other guy, which of course turned out to be Avastin.  As soon as the oncologist said that, I wanted the same for Dad, the same medication, the same outcome.  I desperately wanted Dad to be the one that the oncologist could hold up as an example of a success story in the future.

This is just how new I was to that world, though: when the doctor explained what the "standard of treatment" was for Dad's type of cancer, what I really heard was "standard treatment, " and I got hung up on the word "standard."  In my mind, that meant "average," and, as the doctor talked and talked, I just kept thinking, "HELL NO, we don't want the 'standard' treatment - we want the EXCEPTIONAL one!"  

It wasn't until a few weeks later when we were at the Brain Tumor Clinic at Duke that I realized that the term was actually "standard of treatment" and that it referred to the treatment that was generally accepted and used for a specific diagnosis.  

Since then, I've become familiar with stories about people who have been diagnosed with GBM and who have fared well going the route of the standard of treatment, which typically has very few side effects.  I've heard stories about other people with the same diagnosis who have chosen different types of treatments, too.  But I didn't know any of that back then.

The only choices we were given that day in the oncologist's office were the standard of treatment (an oral chemo called Temodar + radiation) or the cutting-edge version (Temodar + radiation AND Avastin, which works by cutting off the blood supply to the tumor site) that was going on as part of a clinical trial.  That was it.  As I've learned since then, there are other treatment options available for GBM, and I think those alternatives at least deserved a conversation.  Unlike some other cancers that are diagnosed much more often, only modest advancements in the treatment of GBM have been made over the last 30 years, and so far a successful "cocktail" of chemo or other treatment regiments that positively affect survival rates have not been identified.  As a result, there isn't a cookie-cutter approach to treating the disease, which means there are possible variances in treatment strategies.

Maybe the oncologist thought we had time to try alternate treatments if necessary in the future, if the first protocol wasn't successful or if it was and then a relapse occurred (which almost always is the case with GBM).  Maybe he felt that things like vaccines and other immuno-therapeutic treatments wouldn't be as effective for Dad for some reason.  I am just left to wonder why other possible treatment options weren't discussed at all, one of many questions for which I know there is no answer.

The Truth

I’ve been thinking a lot lately about the fact that there isn’t a word to describe the role that a child assumes when a parent goes on ahead.  For the spouse, there is “widow” or “widower,” a term that comes from an Indo-European root meaning “to be empty.”  

The truth is that, without my dad, part of me is empty too.  Floating around in that empty space is grief, a state of being in many different emotions, not the least of which is regret.

Several months ago, I read the book House Rules by Jodi Picoult, and a line from the book really stuck with me:  “Living with regrets is like driving a car that only moves in reverse.”   I know in my head that’s true; regret, especially in a situation like this, is an exercise in wheel-spinning.  It certainly isn’t going to help anything, and yet it’s still present, pushing questions and thoughts and other emotions into that empty space on a regular basis.  

Of course, I wish we had found out about the cancer sooner – soon enough to have done something about it!  Even if earlier detection didn’t result in a cure, maybe it would have given him longer to live.  Even if more time wasn’t in the cards, maybe earlier detection would have resulted in less of a loss of function for him so that he could have enjoyed the time he did have left.  

Beyond that, I think the remaining regret is entwined with disappointment, in some cases because of things that happened or had to be done and in others because of things that didn’t or just weren’t possible.  

I wish we’d had time to investigate other options for him and that we could have talked to him about those options, both from a medical standpoint and other choices related to how he wanted to spend the time he did have left.  He said he wanted to go to a beach, but that was when we all thought he was going to get better and so that got added to his Bucket List for when he was feeling better, which of course never happened.  I regret that it just wasn’t to be for him and that, no matter how hard we tried or how much he deserved it, we couldn’t make that happen for him.

Dad on the beach, when he was healthy

I wish it had been possible for us to be sure he knew he had so many friends who loved him.  I will always regret that we didn’t encourage more people to visit him when he was sick.  We didn’t, because we were trying to protect him, but the end result wasn’t what we expected or intended and for that I am so sorry.

The grief counselor has helped me to see that I would still have what-if’s and second thoughts to consider in hindsight if we had gone a different route, though.  For example, if we’d said no to having him go to rehab – then we would have wondered if having he go would have helped him get stronger physically, mentally, and emotionally.  If we’d taken him to the beach in lieu of treatment, we’d have wondered if making another choice would have extended his life or even possibly cured him if we’d sought treatment.  And, in either case, he would have been miserable anyway.  The chance for quality was squashed by the tumor.

"[Y]ou can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something -- your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life."  ~Steve Jobs

Rippling

 

From what I can tell, it seems like there are three main things that scare people about dying:  physical pain in the present (“Will it hurt?”), emotional pain related to the future (“How will my loved ones and I go on without each other?”), and emotional distress/worrying about the past (“Will I be remembered?”). 

I’m not sure about the first two.  We like to believe that we can control most or all of the physical pain with medication and human touch, and most people think that dying brings a sense of relief to the person who goes on ahead so that he or she is not worrying and does not have a sense of time or of separation from those left behind.  Neither of these two things are really something we can know for sure until it is our time to go on ahead.  The last one, though, is something that I think we can consider as we go about our daily lives.

In Irvin Yalom’s book, “Staring at the Sun: Overcoming the Fear of Death,” the author talks about something he calls “Rippling,” the concept that each of us creates - often without our conscious intent or knowledge - concentric circles of influence that may affect others for years, or even generations.  Rippling refers to leaving behind something from your life experience, some trait, some piece of wisdom, guidance, virtue, or comfort that passes on to others, and then has the possibility of then being passed on by those to still others.

  

This is Paying It Forward in every sense of the words.  It’s an opportunity we all have.  It happens when an act of kindness has been witnessed or received or even just talked about.  It happens when words of wisdom or even just plain old words are heard, considered, and repeated.  These things can alter the thoughts, behaviors, words, and perspectives of others, which can then create a chain effect. 

Kindness is something that binds human beings together, from individuals and communities to generations and civilizations.  It puts the focus on what we as a society think is right and often on what we hope would be done for us should we be in a less fortunate position ourselves.  It benefits the kindness-giver, the kindness-receiver, and those who bear witness to the kindness.  The point of true kindness is just that … to be kind.  It carries on, long afterwards, and its impact, like that of people who regularly practice it, can be far reaching.

For what do most of us want to be remembered after we go on ahead?  Probably not something like being a good employee, or keeping a tidy house, or have a cool car, or wearing fashionable clothes – probably, hopefully, we want to be remembered for our positive actions, particularly those actions that have positively affected other people.  And when that remembering occurs, that’s Rippling.  And that is proof that actions and words live on long after we do, in the way that the words of our parents somehow end up coming out of our own mouths, in the stories told about us by our children to their children, in the things we have done that our loved ones talk about or think about because they think those things were funny/brave/smart, in the perspective of those who have known us and in those who have known those who have known us. 

When my kids were little, someone I knew asked me once what I wanted them to “be” when they grow up.  I’m sure she meant what did I want for them to have for a career and that she expected me to say something like a teacher, a doctor, or an architect.  Or maybe she thought I’d say that I wanted them to be rich and/or famous.  Regardless, though, what I said was this: “I want them to be kind.” 

She thought for a minute and then she said, “Well, be careful with that, because you don’t want them to always put others in front of themselves.  You don’t want them to change who they are to suit others.”

I think she had kindness confused with niceness.  Kindness is the quality of being friendly, generous, and considerate, and, to her first point, it can include how one treats oneself as well as how one treats others.  Niceness is being pleasant, agreeable, and satisfactory.   I don’t think it’s always the right choice to be nice, but I do think it’s always best to be kind, to ourselves and to others.  In extreme cases, kindness may mean just considering someone else’s perspective, background, or circumstances; it may mean being a little less harsh in our opinions or a little more cautious in jumping to conclusions.  It may simply mean opening ourselves up to the possibility of having our perspective changed by thinking about someone else’s situation.  That can’t be wrong.  It allows us to take what we know, what we believe, and the experiences of all that has impacted us in our lives and use it as a kind of Kaleidoscope or Viewfinder, something we look through to compose, and in many cases to focus, on the Big Picture. 

We are altered by those we love and those who love us.  We have been changed by many people whom we know and whom we have known.  In fact, we have been impacted in some way by everyone who has crossed our paths.  And crossing paths with us in turn affects others; it is our form of Immortality.  Our choices determine whether that impact is for the better or for the worse, and that is something that we can work on every day of our lives, something we can control in this out-of-control world.

Rippling is not a theory; each person undoubtedly lives on in the effects of our actions, words, thoughts, and perspective, in the memories of others and even in cases when our impact isn’t linked to a memory but to the Ripples we have generated.  Whether we intend to have an effect or not, those Ripples are created, and so the answer to the question we are all likely to ask when our time to go on ahead comes is a resounding YES – we will be remembered. We will have left a mark.  There will be a Rippling as a result of our having been here.  Each of us will have an impact of some sort.  We can do what we think is right, we can practice kindness or whatever else we choose to do, and then we can hope that what we leave behind is for the good and trust that it will then be passed on to others and then others. 

"Be kind whenever possible - and it's always possible." ~Dalai Lama

Family Connections

Family is defined in the dictionary as “a group of people related to one another by blood or marriage;” “a person or people related to one and so to be treated with a special loyalty or intimacy;” or “a group of objects united by a significant shared characteristic.”

From my current perspective, though, a more accurate description of the institution of family is a hybrid of these:  to me, family is a group of people who are connected by circumstances, cause, and choices.   The people that make up a family may or may not be related by blood or marriage, and they often play a vital role in dealing with serious illness and grief.

During the time that Dad was sick and in the months since he went on ahead, I have seen the makeup of our family change.  Actions and lack thereof have resulted in the forfeiture of the inclusion of some people whom I fully believed would have supported us in our time of need, some of whom I would have even bet the farm on because I thought they were included in the group I defined at the time as my family.  I stand corrected, though, in some cases, as well as disappointed, hurt, angry, and full of even more grief for the loss of those relationships as I thought they were.

The surprise, the transference, the thing that allows me to keep my faith in mankind, though, has been the outpouring of love and kindness from many of our friends who have become family to me.  Those who have suffered a loss and know the devastation, even those to whom we weren’t “close” in the past, as well as those who don’t know a loss like this first-hand but have made every effort just to be there and to listen - all of them have been such a comfort to us, and that is something I will never forget.  

I will forever value the lifeguards who guided and supported us, who kept us afloat, when we were thrown into the deep end when Dad was first diagnosed, as we treaded water while he was sick and in the throes of grief, and as we struggle to try to make it back to shore without being pulled under by the current.

As part of his training program for the upcoming Ironman triathlon, Dad trained with a swim team at a facility near my parents’ house.  The majority of the people on the team were years younger than he was; some were even half his age.  Like he so often did, he made an impression on these people just by being himself - genuine, dedicated, positive, and kind.  Before he got sick, Dad had mentioned to me a few times that he really liked being on this team, and he talked about how cool he thought it was that Ashley, the coach, was a gold medalist on the U.S. swim team in the 1996 Summer Olympics, which, coincidentally, Mom and Dad had gone to as spectators.  

During the time just before and after Dad’s surgery, he told me to contact Ashley to let her know why he wouldn’t be at swim practice that week.  He said he didn’t want her to think he was “slacking off” at the end of his Ironman training schedule.  After she found out what was going on, she offered to help with anything we needed, and, from that point on, she became one of Dad’s cheerleaders and a support on the sidelines to the rest of us.  She organized a schedule of meals to be provided by members of the swim team on an every-other-day basis.  She sent cards and checked in regularly to find out about Dad’s progress.  She did research to find out which Physical Therapists did aquatic therapy when I mentioned to her that he really wanted to get back into the pool as soon as possible after he finished his inpatient rehab stay.  And, when Dad was on the decline that sent him to the hospital the second and final time, she stopped by the house for a visit and ended up helping my sister get Dad up after he had fallen.  Dad admired Ashley as an athlete and as a person, and it was obvious that the feeling was mutual.  Before his diagnosis, Dad was the only one in our family who knew her, but, through her efforts and her kindness, we all came to think of her as a great support and a friend.  She and the other swim team members cared so much for Dad and were so compassionate that they continued to bring meals to the house for many weeks after Dad died, feeding both our bodies and our spirits with their kindness.

Something that was therapeutic for me during Dad’s illness was writing updates for his Care Page.  Word spread quickly about his illness, and within a couple of weeks, we had 375 “visitors” checking the Care Page for updates.  Over the 75 days of Dad’s illness, those online supporters viewed his Care Page more than 6,000 times and left over 1,000 messages for Dad and for us.  We read many of the posts and comments to Dad, and we have read and re-read them many, many times since and have found comfort in the concern, the sentiments, and the messages over the past ten months.

I saw an editorial recently in which the author said he thought it was “crass” to announce or to discuss serious illness or death through social media like Facebook.  I couldn’t disagree more!  I don’t know what I would have done without the connections and support I have gotten through Facebook over the past months.  Many people shared stories of their own losses with me and had great advice about how to get through the day, the weeks, the months of grief.  Others just checked in here and there and let me know they cared about how I was doing.  A few told me about how they loved Dad and let me know that they missed him and would always remember him, too.  Some posted thought-provoking and inspiring quotes, photos, and statements that have influenced my perspective.  And still others provided me with welcome distractions and laughs, all of which have played a valuable part in pulling me through the murkiness.

As much as I will always carry with me the pain of the loss and the suffering during this time in my life, I will forever remember and treasure the friendships and the generosity, consideration, and affection of those in what I consider to be my newly formed family.

We don't accomplish anything in this world alone ... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads from one to another that creates something.  ~ Sandra Day O'Connor