Saturday, January 12, 2013

200th Entry!

This blog entry marks the 200th note published since this site was started in May of 2011.

In that time, there have been over 15,000 visits to the blog, by people from all over the world.  I think it's fascinating to look at blog statistics and to realize the power of the Internet:

It is so heartwarming to see how Dad's story is carrying on and how his life and his perspective continue to impact people, rippling outward to individuals who didn't know him and to many who don't know me, and the support and the comments that I have received as a result of this blog have meant so much to me, more than I can adequately convey.  In the world of grief, one thing that helps to hold us up is camaraderie, and I will always remember that which has been bestowed onto me and my family.

I've learned a lot from the emotions and the thought processes that go into writing for this blog and from the comments that have come from others who seem to somehow "get it."  Because of the blog, I've gotten feedback from several people whom I knew only casually or whom I knew in a completely different context over the past couple of years, and I've gotten to know several people in a different way than I did before.  

Through this process, I've also realized the value of words.  Words are important, and they can be healing or hurtful, depending on how they are put together and on how they are spoken and how they are heard.  Since my dad's death, I have grown to detest some commonly used wording and to prefer some wording over others for certain things.  As I've mentioned, I hate the term "new normal;" it seems better to me to say "new routine" or "moving forward" instead because I don't think I'll ever see not having my dad here with me as "normal."  As is evident in the majority of the 199 other blog entries, I prefer the term "going on ahead" to "died" or "passed away;" the former just sounds so harsh and so final to me, and the latter sounds so passive, as if he didn't try with all his might to stay here in this world with us for as long as he possibly could.  I don't like to think about dying as a person's losing a battle; I think it's better to say he ended his battle instead of saying he lost his battle with cancer.  The latest perspective in wording that has come to my attention is a question that is often asked of people who are coping with serious illness or those who are grieving: "How are you?"  What I have come to see as more fitting phrasing is "How are you today?" That seems to open the door for a more honest conversation instead of just having the response be "I'm fine" when so often that just isn't true.  It's semantics, I know, but somehow it's become one of the things that I pay much more attention to these days, as part of my current perspective.

One thing that I used to say as a child that I wanted to "be" when I grew up is a writer; as a teenager, I told that to my dad a few times, and each time he said he didn't think it was likely that I would "make a good living" that way.  (It was very important to him that my sisters and I each found a career that would give us job stability and that would allow us to support ourselves.)  I guess it's kind of ironic then that through his illness and through the grief that followed after he went on ahead I have somehow found my way back to writing, and, if he were here today, I would tell him that I am using writing as a way to make a good living, maybe not for profit but for perspective and for therapeutic purposes.

In closing, I'd like to share a quote about grief that I came across in Dean Koontz's book Odd Hours:

Grief can destroy you -- or focus you.  You can decide a relationship was all for nothing if it had to end in death, and you alone.  Or you can realize that every moment of it had more meaning than you dared to recognize at the time, so much meaning it scared you, so you just lived, just took for granted the love and laughter of each day, and didn't allow yourself to consider the sacredness of it.  But when it's over and you're alone, you begin to see it wasn't just a movie and dinner together, not just scrubbing a floor or washing dishes together or worrying over a high electric bill.  It was everything, it was the why of life, every event and precious moment of it.  The answer to the mystery of existence is the love you shared sometimes so imperfectly, and when the loss wakes you to the deeper beauty of it, to the sanctity of it, you can't get off your knees for a long time; you're driven to your knees not by the weight of the loss but by the gratitude for what preceeded the loss.  And the ache is always there, but one day not the emptiness, because to nurture the emptiness, to take solace in it, is to disrespect the gift of life.

Thursday, January 10, 2013

Happiness - Pursuit and Perspective

I remember the first time I had a running injury that affected not just my running but also bothered me in when I wasn't running.  I remember lying in bed at night with my foot throbbing and thinking about how I hadn't appreciated being injury-free before I'd gotten hurt.  In time, the foot got better and the pain went away; I went back to running and back to not taking much notice about how lucky I was to be pain free.

That's kind of how it works when someone you love is seriously ill.  Except that in many cases, I would venture to guess, that perspective sticks ...  

... because seeing a loved one suffer physically and emotionally and going through all the things that grave illness entails changes a person, not just for during that time period but forever.

Since my dad's diagnosis and his subsequent death ten weeks later, I've begun to view happiness as the absence of sadness -  and goodness in life as the absence of, well, badness.  

People talk a lot about the pursuit of happiness, the quest for the Holy Grail, thinking they will be happy if ... if they win the lottery, if they get a promotion, if they lose weight, if this or that happens.  I've been guilty of such myself in the past.  

But that was Before. Before Cancer.  Before Loss.  Before I knew.

And so here's another perspective for people who are perpetually in search of something more: conducting such a vigorous search for happiness or peace or satisfaction or whatever it is they are looking for eventually becomes a self-defeating quest; the crusade itself is a constant source of stress and anxiety that is likely interfering with the attainment of that very objective.  Instead of always looking for something more, something "better," it might be helpful if they take a few steps back and consider how lucky they are to have their everyday lives, to be in the midst of the usual stress and chaos, rather than the alternative, which I guess is either being completely alone with nothing or no one to care about - or trying to cope with such extraordinary problems that going back to those everyday things becomes the goal with happiness as the reward.

In the thick of the usual day in-day out struggles, it's so easy to get caught up in thinking that life is tough, that things aren't great, that there is something better out there that you wish you had.  But when adversity comes along, especially when it affects your health or that of your loved ones and especially when it is life threatening, you realize that you just want to go back to having things the way they were.  Your perspective becomes that you didn't need anything more, because life was already good.

I think that's what tragedy gives away, or at least that's one thing that we can choose to take away from tragedy.  Once we've been through it, we have that special realization, that insider's knowledge that things could always be worse, because we are all too aware that, because adversity can be lurking just around the corner, we need to appreciate the calm, the ordinary, and the mundane, and that happiness is not something that we need to pursue - it's something we need to recognize in what we are already fortunate enough to have.

Tuesday, January 8, 2013

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.