Seizing the Moments

The last time I saw my dad healthy was on a big family vacation at Lake George in upstate New York.  As usual, we did a lot of hanging out on the trip ("binding"), which was great.  One of the activities we did during that time was to go to the Adirondack Extreme Adventure Course, an intense rope course composed of stunts involving zip-lines, Tarzan swings, hanging nets, wobbly bridges, and suspended logs.  Through an Internet search of things to do in the area, I found information about the park and encouraged others in the family to sign up.  Unfortunately, I didn't pay much attention to the term "extreme" in the title beforehand. I also didn't realize just how high in the trees the majority of the course would be situated or how long the course was (we later found out it usually takes 3-4 hours to complete the course).  

When we got to the park, we were given instructions and a quick safety lesson, and then we lined up and started climbing.  I knew Dad was afraid of heights, but, as I said, I didn't think the course was going to be roughly twenty feet off the ground.  I was pretty nervous while we were on the course, both for my own sake and because of a few other people in the family whom I knew were struggling for various reasons, including Dad.  In the many athletic pursuits in which I had participated over the years with my dad, I had never felt such a sense of protectiveness towards him; he was the one who was typically having to assist me.  Dad was completely capable of managing the physical demands of the course - he was already in training for the Ironman triathlon at that point - but he was anxious about the distance to the ground.  He wasn't about to quit or even to admit that he was scared, though; that was a given.  As always, Dad stuck with it and finished, laughing and cutting up along the way.

No one could have possibly predicted what would be going on just 3 months later - or less than 3 months after that.  While Dad was sick, I often thought back to the time when I was watching him on the Adirondack course that day.  I could clearly remember feeling like I needed to safeguard him, to shield him or "spot him" on the bridges and ropes, maybe not as much from what was required of him along the course but more from his apprehensiveness; I didn't want him to be scared.  It was a weird kind of foreshadowing for the way we would have to guard and encourage him though the fear and instability during his fight with cancer.  

I often think about the last “this” or “that” for my dad – the last birthday card he sent me, the last time I talked to him on the phone, the last time we ran together, the last email and text he sent me.  Thinking about those things makes me so sad and, truth be told, afraid, almost to the point of being paranoid, because it leaves me wondering WHAT’S NEXT, what could be just around the corner at any point in time … I know that’s not productive, and probably not all that healthy, except that it’s part of this crazy grieving process, and I also know that it’s something I cannot avoid.

Thinking about “lasts” for my dad makes me think about the popular message Carpe Diem, seize the day.  I love the movie “Dead Poets Society” as much as the next person, but here’s what I’ve started to consider since my dad went on ahead:

People are always talking about living for the moment, enjoying each moment of each day, and trying to find joy in everything one does.  While I understand the sentiment behind this goal, I have to say that for me, the whole Carpe Diem thing doesn’t really fit.  Not all the time, and not for everything I do.  In fact, that message makes me feel like I’m falling short of something (Gratitude? Time? Perspective? Joy?) if I am not in a constant state of happiness, if I’m not smelling the roses every single second of every day.  I think it’s a good idea to have the perspective that today was a good day when one’s head hits the pillow at the end of each day, but, really, if I truly set out to live each day to its fullest, I wouldn’t be taking care of what needs to be done (going to work, occasionally cleaning the house, cooking supper, etc.).  It might make for an easier day that day, but on down the road, not so much.

I think it’s possible that a person who truly lives in such a seize-the-day state is faking it or lying, being reckless, and/or at least partially hovering close to some mental problems, in many cases.  From fighting traffic to balancing the checkbook to emptying the trash (don’t smell THOSE ROSES!) to scooping the litterbox, it’s inevitable that there are some things in life that aren’t all that!  But here’s the important part of this message:  THAT’S OK!  It doesn’t indicate weakness or failure or ingratitude or anything else.  Feeling the pain, complaining every once in a while about the grind, looking forward to the weekend doesn’t mean that one day we’ll be SORRY for anything.  

The author Dorothy Parker said, "I hate writing. I love having written."  That about sums up what I’m trying to say.  Life, and some of the things in it, are HARD sometimes.  And that’s ok to admit.  When I consider the whole “appreciate every minute of the day” thing, I think it’s so ironic that being expected to maintain that “I’m so lucky/everything is great” attitude 100% of the time just ends up being JUST ONE MORE THING on our to-do list, in the column of things that never gets to be crossed off, giving us something ELSE to worry about, to feel inadequate about, and to feel guilt over, a top-off of what could become an inevitable DOUBLE FAILURE.

I’m pretty sure that’s NOT the real message behind Carpe Diem.  I think we can and should choose to be grateful for what we have, make the most of every moment, and take a deep breath when things seem overwhelming.  I think we should appreciate the simple things in life, love one another, and do the best that we can in any situation.  I think we should Carpe whenever possible but that we shouldn’t feel guilty if that Carpe isn’t for the whole Diem.

I think time comes in two forms – Real Time, which involves the ins and outs, the struggles, the grind, the waiting in line, the countdown ‘til something else happens (5 p.m. Happy Hour, bedtime, vacation time, time to eat chocolate, etc.); and Good Time, the actual smelling-the-roses, savoring-the-coffee, basking-in-the-spender moments.  The spiritual times when we take it all in, whether we do so intentionally or accidentally.  It’s when we notice the magic, the goodness, the love, and the peace.  It’s counting your blessings, feeling lucky, no matter what the actual circumstances are.  It’s getting perspective.  Those are the moments we need to bookmark, to hoard in our memory banks for later, to seize, for just in case, for the future when we can look back and reflect on the goodness of life.

The Way We Were

Here we are one year from the day that Dad couldn’t finish his run*, when he was taken by ambulance to the hospital and the mass was discovered in his head, when he stopped breathing for several minutes and had to be resuscitated in the middle of an MRI scan.  When his life – and the lives of everyone who knew him – changed forever. 

I really don’t want to mark this date on my calendar.  Hell, I don’t want it even to have happened, and sometimes I still don’t believe that it did. 

Here’s one thing I’ve been thinking about lately as I go back in my head through the story of what happened a year ago:  Dad regularly used to half-jokingly say that he hoped he would “go out running.”  What better way to go, he pointed out, than when you're doing something you love?  Certainly he didn’t want to officially Grow Old; he would not have done well sitting in a rocking chair on the porch all day.  And who among us wants to stick around so long that we lose our independence and suffer physically and emotionally?  No one I know, most especially Dad.  He hated inefficiency and down-time. 

 In many ways, for Dad it would have been so much easier to go to the light when he stopped breathing in that tube a year ago.
I believe he had the chance to go on ahead then and that he made a conscious decision to come back to us, not for his sake but for ours.  I think a person who wasn’t as strong or as determined or who didn’t have as much love and devotion for their family as Dad did would have made a different choice in that situation, and I am more grateful to him than I can ever express for the choice that he made on that terrible day last October.


Dad gave up his chance to go on ahead when he could have that first time; he devoted the end of his life to being with us a little longer.  I don't think everyone has that chance - or the courage to take it when they do - but he did.  He put all of his effort and strength into it, for us.  And, as much as I long for the way we were, I am so incredibly thankful that he held on for as long as he possibly could.

*To clarify: October 23, 2010, was the day that Dad was taken to the hospital and had the mass detected.  I keep picturing myself on the airplane on the way back from a conference at the time he was in the ambulance, late in the afternoon on that Saturday, and that's what inspired the timing of this post on October 22, 2011.  

The Difference

I recently came across a story about a 54 year-old man from Turkey who was diagnosed with a brain tumor around the same time my dad was.  Like my dad, this guy had surgery during which it was determined that not all of the tumor could safely be removed.  He had his life turned upside down for awhile, but at least in the case of this man, he still had his life and he got to go on working towards his goals.  In fact, this man, who already held 11 world records for breaking concrete blocks with his bare hands, earned the title of World Champion in the sport of taekwondo only seven months after his diagnosis, and now he is trying to better his own record by using his bare hands to shatter 1145 concrete blocks in under 60 seconds (his previous record was 1135 blocks).

Click here to read the story

After the competition, the man attributed his victory to "faith and perseverance," and the report describes him as being "high spirited and determined despite his age and his serious health condition."

 

While I’m impressed by his skill and fortitude and glad that he had a “good outcome” after his diagnosis, what I’m really thinking after reading his story is why we couldn’t have had that “outcome;” in other words, what’s the Difference?

In all the research I did about brain tumors and brain cancer after Dad’s diagnosis, the one commonality that I noted in the stories about people who achieved long-term survival was having a belief that they would survive.  But we had that!!!  The words uttered by and the description of this guy could have been my dad's!!!  So, back to Square One – what’s the Difference??

At the beginning of Dad’s treatment, we explored the idea of using vitamin and supplements as part of his treatment.  We read lots of books and journal articles and corresponded by email with a few physicians and even one man who, as a 20-year brain cancer survivor, had forgone traditional medical treatment and had instead used a model of nutritional and dietary changes.  This man has written a book about less frequently considered treatment routes for brain cancer, and he was kind enough to answer our questions and provide specific advice via email.  When we asked Dad's team of oncologists about adding supplements and looking at dietary changes or even the possibility of using a few off-label uses of medications, we were told they felt it was necessary to wait until the Dad had completed chemotherapy to consider starting any of them because of possible interactions.

I eventually persuaded them to agree to Dad’s taking 15 mg of melatonin per day by pointing out that melatonin is often used to address sleep problems and the obvious health risks from the utter lack of sleep he was getting due to the crazy-high doses of steroids they felt was necessary.  We had seen research that indicated that melatonin could also function as a powerful anti-oxidant when added to conventional therapies (chemo and radiation); one clinical trial showed significant reduction in tumor size with years added to the average survival time with this as part of the treatment regiment.  But I kept that part of what I knew to myself at that point; as long as they agreed with adding it to his Pill Box, I was satisfied for the time being.

The team of oncologists also agreed that Dad could take a multi-vitamin to address our concerns about his immunity from the steroids and the chemo.

We kept charts and logs of Dad’s daily food intake, paying careful attention to the amount of nutritional value of what he was eating.  Because of the medications he was taking, his appetite was literally feast or famine; he either said he was “zero hungry” or he requested foods that had little or no nutritional value, like Diet Cokes and, the food he asked for the most, “just a little piece of chocolate.”  Dad would normally never have eaten the junk food he did while he was sick, but either he wasn’t in a place cognitively or emotionally to consider it as he usually would have or he just figured what the hell – I’ve got brain cancer; I should at least be able to eat whatever I want for a change!

After his first dose of chemo, I printed out lots of recipes for things that I thought would be good for him to eat.  We made a plea to the oncologist around that time for a consult with a registered nutritionist, and the one that met with us provided Dad with some samples of calorie supplements and encouraged him to drink Ensure, whole milk, and milkshakes to further boost his intake because she said his daily calorie count was too low.  Dad balked at those suggestions; his pre-diagnosis personality kicked in and he said he would never drink something “fatty” like that.  When we tried to talk to him about how he needed to increase his intake of healthy foods, he usually said, “I don’t really see how I need to eat more since my exercise program now consists of leg and arm raises and walking around in the house on a walker.”  Further discussion and reminders about what the doctors and nutritionist had said resulted in his saying “Riiiiight!” and then tuning us out.

I did talk him into drinking smoothies, though; I named off all the fruits and vegetables blended into the concoction, and I guess he thought that seemed to be reasonable as part of his Recovery Plan.  I didn’t mention the calorie-boosting things I added to the mix, and he didn’t notice.  A few times I mixed in things like spinach to give even more Vitamin Value; each time, he chugged down those smoothies with a grimace like a big shot of liquor and then requested a beer as a chaser to reward his Good Behavior.

Despite all of the charts, recipes, fruits, vegetables, and supplements and all of the effort it took especially on Dad’s part to try to comply and to move forward with our Recovery Plan, we found out that it just didn’t make a Difference because, before he could even get a third dose of chemo in his system, he was took weak and too sick for any of it to matter.

Like probably every other person whose loved one has lost the battle to the side effects of the treatment of cancer, I wonder every day if the route we should have chosen was an alternate one.   Would that have let him sleep, and, if so, would that have helped him?  Would he have had more energy for doing things he wanted to do, even if it didn't increase his length of survival?  He certainly would have avoided the pain of needle sticks and some of the uncomfortable side effects of the chemo and steroids, even if he didn’t get better physically.  Could we have gotten him to a beach, which is where he really wanted to go? Would another treatment or even none at all have made a Difference?

There are many questions I would like to have answered that probably never will be.  I have been considering writing a letter to Dad’s doctors, not necessarily to ask those questions because, even if they were answered, it wouldn’t really matter because it wouldn’t bring him back.  I wonder, though, how it would be received if I shared some of my thoughts about what else could have been considered or done in a situation like ours.  Maybe the doctor or whoever opened and read the letter on his behalf would toss it straight into the trash.  Maybe the letter would be read but disregarded because I don’t have an M.D. behind my name.  But maybe, just maybe, it would spur an original perspective, shed a new light, bring about a changed view, and, “best case scenario,” as my dad liked to say, maybe it would make a Difference.