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.

Dog Tags

Sometimes when I think back to during the time when my dad was sick, I remember a detail that I had forgotten or overlooked in my memories before.  

Today I remembered his dog tags.

When I was growing up, whenever I asked my dad about his experience serving in Vietnam, he always talked about how his job there was to guard a building with weapons in it, often on an overnight shift.  

My dad was never a "night owl;" as far back as I can remember, he was much more of a morning person, and I guess that was true when he was in the service, too, because he often commented when he talked about that time about how hard it was for him to stay awake on his overnight shifts.  He said he usually ran around and around the building he was assigned to guard so that he would stay awake and alert during those shifts.  The only problem with this plan, he reported, was that he had to wear his dog tags at all times and, as they hung from the chain around his neck, they drove him crazy bouncing against his chest as he ran.  Ever the improviser, though, he thought of a solution to this problem too: he took the dog tags off from around his neck and put them in his pants - in his jock strap, to be exact. 

It's kind of funny to think that a person can be proud of someone else before that person was even born or before they knew each other, but I know it's possible, because, picturing my dad as a young soldier in a foreign land, before I was born, doing what he had to do to get his job done and to defend our country, I feel such a sense of pride and respect, the same pride and respect that I have had for him throughout my life. 

But those dog tags from Dad's days in Vietnam aren't the ones I think about most often these days.  The dog tags on my mind are the ones that Dad wore on a chain around his neck as a 66 year-old man as he trained for the Ironman triathlon.  He tucked those into his shirt as he rode his bike or ran, and, the day before he became disoriented on a run and our campaign against his brain cancer began, the chain that held those dog tags broke.  And so, on that fateful day, he set out for the first time in many months without any form of identification at all.  

I think when most people think about dog tags, they think about toughness.  That's what I think about, too, because it was that, along with his strength and resilience that day that allowed Dad to dig deep enough so that, even in his state of confusion coming from the tumor the size of a racquetball in his brain, he could remember not just his home phone number (which was called first by the police but went unanswered because my mom was out of town) but also my aunt's cell phone number, which he also recalled and then gave to the police who had been called to the scene because he somehow also remembered that my mom was out of town that day and realized he needed to call someone local.

I have spent time, some while Dad was sick and even more since he went on ahead, thinking about how things would have likely gone had he not had the fortitude to pull out that information in those few moments before he was taken to the hospital by ambulance, before he had a couple of seizures, and before he quit breathing and had to be put on life support temporarily until he could be stabilized.  It is nothing short of terrifying to think that all of that would have been going on and no one in our family would have been able to be notified so that we could all get there to be with him.  It's horrifying to think about the fact that he would have been a Missing Person for an undetermined amount of time, because, with my mom out of town overnight that night, it is highly likely that no one would have realized that he didn't make it home after his run that afternoon.  We would not have known that anything out of the ordinary was going on.  Again and again, it hits me that, even with as bad as it was when he first got sick and throughout his illness, it could have been worse.  At least we knew where he was, and what was going on with him, and at least we were able to be with him. 

Dad, wearing the dog tags, competing in what ended up being his last race, one month prior to his diagnosis of brain cancer

In the days just before and just after his surgery, Dad worried a lot about what he called "loose ends."  As it would be for any of us whose life was put on hold in the blink of an eye, it was unnerving and extremely anxiety-causing for Dad that he had not been able to prepare for the time he was having to miss work and everything else for which he considered himself to be responsible.  In the midst of the constant stream of worries he had about his health and about needing to take care of the responsibilities in his personal and professional roles in life, he said he wanted to get the chain that had held his dog tags fixed, "so that I'll have it ready as soon as I can get back on the road."

And so, sitting in the hospital room with him in the Neuro-ICU, I searched on the Internet and found a company that sold replacement chains and ordered one for him; he was visibly relieved when I told him that a new chain was being sent to him in the mail.  And that's where the meaning of those dog tags deepens in our story; instead of standing only for toughness, Dad's dog tags also represented Hopefulness, and we desperately needed everything we could get to bolster both of those qualities as we entered into a more grueling battle than any of us could even imagine at that point.

Childhood Cancer - How We Can Help

Did you know that, despite that fact that over 13,500 children will be diagnosed with cancer and about 2,500 kids in the U.S. alone will die from this disease this year, only about 4% percent of the annual budget of the taxpayer-funded National Cancer Institute (NCI) is dedicated to childhood cancer?  

Hearing that makes we want to do something about it.  All cancers are devastating; childhood cancers are the worst in that the smallest, most vulnerable amongst us are affected, not just by the disease but by the ravages of the often brutal treatment.  Obviously the children who have been diagnosed with cancer who have not survived have had a great deal stolen from them, as have their families.  But here's another point to consider:  even children with cancer who do survive are being robbed of those months and years of their childhood and are often left with secondary effects of the cancers and/or the treatments that they had to endure to make it to adulthood.

Through reading about cancer in general and then about childhood cancer specifically, I found out about a campaign called The Truth 365, which is an organized effort to educate the public and generate action to help fight childhood cancer through film and social media.  Through the group behind this campaign, individuals like you and me are able to DO SOMETHING to help, through taking just a few minutes of our time.  It isn't a telethon or a fundraiser; it's an awareness campaign, and it's something that has never been done before in this way.

If you are interested in helping in the effort to protect children from this terrible disease, post a link to this blog entry on your social media accounts like Facebook and Twitter and share it with people you know. Then take some time (about an hour, but well worth it) to watch the powerful documentary film produced for The Truth 365 to find out some simple things that you can do to help battle this terrible beast:

The organizers of this group are trying to raise awareness to increase funding for research and treatment of childhood cancers, not just so that more children who are diagnosed with cancer live but also so that those who do survive are not left with a lifetime of detrimental side effects of treatment.  They want people to understand that the statistics that we hear - that up to 75-80% of children who are diagnosed with cancer survive - paint a picture that is not all together accurate.  That statistic, for example, is only based on a five year survival rate, and many of the children who make it to that point do not go on to survive longer term.  They want everyone to be aware that the increase in survival rates that we hear about in kids with cancer over the past few decades have mostly come from these children being given greater and stronger amounts of drugs that were developed for use in adults and that very often no one knows exactly what the effects of these treatments in children will be.  They want us to see that doctors and other health care professionals who are trained to treat these very sick kids and to research the treatments that can save them are having to spend time fighting for funding instead.  They want us to know that with no money and with just a few minutes of our time, we can do something to help in this cause.

The film will enlighten you to the facts that we all need to know, whether we personally know a child who has cancer or not.  Through the film and through viewing the group's website, you will find out about action steps that need to be taken to further increase awareness and support and to secure the funding needed.  You will learn in viewing the film is that each of our Congressmen have been asked to sign a pledge which affirms his or her support for children with cancer.  

A listing of those U.S. Representatives and Senators who have signed the pledge has been posted here -  

http://www.thetruth365.org/pledge/  

by state, so that we can see who still needs to be encouraged to sign this pledge.  For example, in Tennessee, two members of Congress have yet to commit: 

They are asking us to contact members of Congress who have not signed the pledge to ask them to do so.  Most of the contact info you need is right there on the site; if you live in Tennessee, you can click here for Bob Corker's contact info and here to contact Chuck Fleischmann to let them know the importance of their commitment to this issue.

When you get to the website, bookmark and check back as often as possible to find out about the latest iniative of the group  and how you can help, often with just the click of a mouse button.  

There are lots of causes and organizations that ask for donations of money and items, especially during this time of year, but this one is unique in that all they are asking for is a few minutes of our time.  The greatest reflection on us as a society and in my opinion as individuals is the way we treat those who are less fortunate than we, and I can't think of an easier way to do that than to participate in this effort.

Sharing

One thing that I have been doing more of since starting this blog is reading the stories of other people who are facing battles of their own.  I guess I am intrigued by (and sometimes desperate to) learn about how different people are making their way through their challenges.  One common denominator that I notice in the stories that inspire me is that each person speaks in a direct way, from the heart, and that each of them has a positive attitude (like my dad), although none of it is too flowery or Fantasy Islandish.  

I recently came across the story of Suleika Jaouad (pronounced "su-LAKE-uh ja-WAD"), which I feel compelled to share; in reading what she has written about her battle with cancer, it is clear that she is nothing short of a badass, and I find her stories, her writing style, and her perspective to be both inspiring and empowering.   Suleika writes a weekly column for the New York Times called 'Life, Interrupted,' in which she chronicles her journey with acute myeloid leukemia (AML).  Her blog, Secrets of Cancerhood, includes links to her series of newspaper articles and her video journal, which she has been keeping since her diagnosis in May of 2011.