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.

At Least A Thousand Times More

Today is the fifth of the month, and, like the fifth of all the other months that have marked the time since I last spent time with my dad on this earth, it's not an easy day for me.

Every month I wonder if there will ever come the fifth of a month on which I won't feel this way.  I don't think so, at least not for at least a thousand times more or so.

I thought I could make it through the day this time around without writing about my dad or my grief, a new kind of milestone that I feel a weird kind of obligation to reach towards, even though it seems unnatural - and, truth be told, so sad and disrespectful I can't really allow myself to think about it much.  

It's been 30 months.  My god that's hard to believe.  But not as hard as it is not to be able to talk to him except in the format of a one-sided conversation.  

Today I've been thinking about the last time I saw him before we knew he was sick, which was on an extended family vacation in upstate New York.  My husband, my daughters, and I hugged my dad and my mom goodbye as we headed off towards our respective gates at the airport at the end of the trip; I don't specifically remember hugging my dad then, but I'm sure I did.  And I'm sure I thought I would see him at least a thousand times more, with both of us happy and healthy.

I can't help myself from thinking back to things that happened when he was sick, and sometimes the memories and the visions of those things haunt me - like how I used scissors to cut the hospital bracelet from his wrist both times when he came home from the hospital - and how the way I felt when doing so was so completely different on each of those occasions.  The first time, he was still recovering from brain surgery and we were still reeling from the news of the devastating diagnosis and preparing for him to go to Duke for the treatment that we thought would save him.  The second time, we had brought him home on hospice, to save him from the spiraling misery that was going on in the hospital, with hope of a different brand.  The second time, I saved the bracelet after I'd cut it from his wrist; I put it in my purse as if that made sense or a difference in anything that was going on. 

I think back to the packed-up box of stuff from his office, the contents of which would seem meaningless, perhaps junky even, to a stranger but were of exactly the opposite to us in value. I don't know where most of that stuff is now; I guess it doesn't matter, except for when it feels like it does.

I can clearly remember the moments during which the news of the diagnosis was delivered to us, and I remember so well the feeling of hope that the statistics wouldn't, and didn't, apply to him, or to us.  It was as if that Hope was our magic carpet, our oxygen, our blood; to live, we needed to believe that he would live.  I sometimes wish that I didn't remember some of those moments or the rapid decline and the series of let-downs and failures and disappointments from the second and final time that we spent with him in the hospital; that was like being caught in a fishing net, and it forced us to reconsider what we thought about almost everything.  I try to think back to the full weight of the feelings of helplessness, of guilt, of terror, and of powerlessness that crept in during that time, before they were overtaken by resignation and different shades of the previous emotions. But I'm not sure; I think they just gradually took hold of me over the course of the last three weeks of his life, and I have to say I haven't quite shaken most of them yet.

At the end of that trip to upstate New York, my immediate family ended up being stuck at the airport in Albany because of a delayed flight due to thunderstorms across the country; my parents made it out on their flight on time.  After they's gotten home, Dad texted me to check on us and commiserated with me about the inconvenience of the lateness of our adjusted schedule.  "I hope you make it home ok," he texted when I told him that our plane had finally been cleared for take off, the second-to-last time he would text me, ever.  And only five months later, I said goodbye to my dad for the very last time, and, in the early hours of the morning later that night, I laid my head down on the pillow to try to sleep and found myself crying so hard that tears threatened to fill my ears.  I tried to stop but couldn't, and then I squeezed my eyes shut and felt that same message flash from me to my dad:  "I hope you make it home ok," I thought between sobs, and then I added,  "I miss you, I can't believe this whole thing happened, and I don't think I can make it without you" - thoughts that would run through my head at least a thousand times more between then and now.

What I Have Come To Believe - Part 3: Fighting Cliches'

A follow-up to "What I Have Come to Believe - Part 1" and "Part 2: A Quest for Patterns and Control":

Fighting Cliches'

The words we use to talk about cancer can influence how we think about the disease - and how we think about the people who have been touched by it.  Those who survive are often called "winners" and are said to be "victorious." Those who have not survived their cancer are called "angels" and are said to be "in a better place."  Whenever I hear those descriptive terms used in that context, though, it makes me wonder if it's being implied that the opposite is true when the story has had a different ending, never a good thing in my book for a process like being diagnosed and treated for cancer, the outcome of which is frequently tied to many different variables that are often very much out of one's control.  

People talk about fighting cancer ... but the term "fighting" implies that there are winners and losers, just as surrendering sounds like giving up.   Certainly it isn't being implied that those unlucky enough to die after being diagnosed with a more aggressive type of cancer or an unfortunate side-effect like infection are losers who have given up.  

My dad was tough; he challenged himself on a daily basis in the physical realm though countless miles of running and biking on the road and grueling workouts, and he worked his whole life to better himself in any way that he could.  At no point in his life was he a loser or a quitter, and he sure as hell never surrendered, even though he was not able to survive the cancer that took his life.  From Day One of his diagnosis, he said he was ready to go back to work, and he continued to say that up until a few days before he died.  That is the opposite of surrendering, if you ask me.  

Advice that I hear being given out a lot in reference to a person who is dealing with serious illness or another extreme trial in life is "Stay strong."  I'm not even sure what that means; don't cry ... don't refuse treatment ... don't die???  And the phrase that is used a lot with intent to encourage a person with cancer - "Never, Ever Give Up", or "NEGU," as it is sometimes abbreviated - makes me wonder if those using that slogan have considered that doing so implies giving up has occurred when one cannot survive despite everyone's best efforts.  When treatment has failed and the disease is taking over, the pressure from hearing cliches like "NEGU" must be almost as unbearable as the disease can be.

Instead of "Never, Ever Give Up," what cancer and grief have taught me is to "Never say never."  More than anything else in my life, the experiences I have had since my dad got sick have shown me that there is simply no way to understand some things without having gone through them.  Lots of things that I thought I knew have fallen by the wayside over the past 2.5 years; now I either have knowledge of a different set of facts - or a different perspective - or just the understanding that there are many things I don't know at this point.

Maybe it's ok to use the term fighting when we're talking about cancer, as long as there is an awareness of the fact that sometimes FIGHTING can be doing something other than getting an aggressive treatment. Treatment and all the things that go along with it are an individual decision, one that can be made exponentially harder because of the time factor, plus the shock, entering into end-stage decisions. I think a lot of people with aggressive cancers opt to try an aggressive treatment as they attempt to figure out what their goals are (their Revised Bucket Lists) - it's like that is the Default when we are faced with the initial decision, and then, if that proves unsuccessful or unsatisfactory, they go to a more traditional treatment or to less harsh remedies or even no treatment at all.  Fighting can be seen as doing any number of things - or sometimes by doing nothing at all, depending on the situation and on one's perspective.

With an aggressive cancer like GBM, the survival statistics are horrible to look at, but people tend to hang onto the knowledge that nothing is for sure; believing that a loved one will beat the odds is not unreasonable, and in many cases Hope is one of the few things that can be controlled. Those dealing with aggressive cancer may consider treatments that have less severe side effects than chemo; they may have an "if-then" list or just an idea of "if" this happens, "then" another option will be considered or pursued.  I know all too well that when the treatment options and their pros and cons have all been laid out, what to do can be a tough, tough, thing to hammer out, but here's the bottom line: sometimes saving a life is not the same thing as extending it. 

From "http://ozbraintumour.info/"

Truths and Untruths

I have a collection of quotes that have meaning to me.  Some of them are touching, some inspiring, and others are words to which I take issue and want to make a correction.

For example:

                                           "Try not! Do, or do not.  There is no try."

Sorry, Yoda, I have to disagree:

The truth is that there is try.  There is trying as hard as one can, with all of one’s might and all of one’s effort, and sometimes that still does not translate into do.  You can pray, beg for mercy, bargain with everything you’ve got, and still sometimes the thing you are trying for just doesn’t happen.  You can play full out, go for the win, gut it out as Dad told me on so many runs, but still nothing. Like the project manager in Apollo 13, you can say, “Failure is not an option.”  But the truth is that sometimes it is the outcome, and your goal cannot be achieved, no matter what.  And then: what lies behind you forever changes both what lies ahead and what lies within.  That’s the truth, that’s the wisdom, and that sucks.

"Once you choose hope, anything's possible." ~Christopher Reeve

Correction, Superman, it’s really not.

"A man reaps what he sews" – nope, not always true!  Sometimes Karma is just shit that happens to you, no matter how good or clean of a life you’ve lived.  

I want to represent those of us who only WISH we could believe in Karma these days! 

I sometimes wish a stubbed-toe on someone whom I perceive as having done wrong to me or someone I care about, but I can't believe in a force of any kind that would bring suffering like cancer to a person of any moral status or other qualifying factor.  I used to think that what goes around comes around, but not anymore.  Now I think that shit just happens; it's all random, except for the way that we choose to deal with it when it does happen.

Believe me, my family and I realize we were lucky to have had my dad as long as we did - 66 years and then 75 days of illness.  In the same vein but based on stories I have heard since my family became so well acquainted with the cruel thief that is aggressive terminal cancer, I am grateful for my dad’s sake that he didn’t have to suffer for too long.  I have no idea how parents get through the loss of a child; I am sure I would crumble.

All we can try to do to keep it together is absorb the support of those around us and hold on to the hope that ONE DAY the memories that bring us to our knees in grief right now will fade and be overshadowed by those of sweetness, love, and connection from when we were lucky enough to have that person right here with us.  And, to work everyday to keep our perspective:  to realize that the truth is that how we feel and how we cope are in large part a CHOICE as we go forward, that things could always be worse/harder/shittier, and, like my dad always said, "If you feel lucky, then you are."

The Why of It

Sometimes I can't clearly remember the me that was before my dad got sick, the person who thought all problems could be solved with effort, the person who believed the world pretty much made sense, the person who believed that good came from good.  

Sometimes I still don’t believe that my dad isn’t still here with us, and – here’s the whole truth – when I have those moments of thinking that, I sometimes let myself bask in the glory of that belief for a little while.  It feels like lying on a beach, soaking in the sun, when these moments occur, but then, inevitably, the sun goes behind a cloud or, worse, a thunderstorm appears from out of nowhere, just like Dad’s cancer did.  

Sometimes I think that whole thing about the five stages of grief is inaccurate.  There is such a flooding of emotions, a constant state of flux, and I’m not sure it isn’t essentially stagnant since there doesn’t seem to be an end in sight.  If the stages do exist as stated, I guess I am clinging onto Denial and fighting off Acceptance, almost as vigorously as I clung to Hope as I fought Dad’s cancer.  And the Anger, I am holding onto that too.  I want revenge, I want justice, I want to lash out; I think that would feel good after all that has happened that feels so awful.  Hell, what I really want is to have my dad back, happy and healthy, and I don’t think it’s too much to wish for that to happen, if only in my memories.

Because mostly what I remember these days is the him while he was sick.  I don’t understand why that is!  I had him for over four decades before the time when he had a zipper of a scar on the top of his head and confusion and fear in his eyes.  Why is that the way I am seeing him now, as he was during just ten of the 2194 weeks I had him during my life?  

Dad never asked, “Why me?” when he was sick.  He did wonder why he got brain cancer, but he thought about it in terms of what he had done to cause the cancer; he thought his health was his responsibility.  He wondered aloud if it could have been caused by the chlorine in the pools where he did so much swimming; he said he thought maybe it was somehow from too much running or from having too many bike wrecks.  While he was in rehab, he asked the neuropsychologist if the cancer came from talking on a cell phone too much, and, even though Dad wasn’t one of those people who seems to have his phone permanently connected to the side of his head and even though to date there is no conclusive evidence that there is a link, the guy told him there could be a connection.  Dad asked the doctors at Duke if they knew what could’ve caused it, and the team of neuro-oncologists there who are some of the leaders in the world in the field of brain cancer told him the causes were unknown.  It made me so sad to see him guiltily ask these questions, all framed with self-reproach, and somehow remembering that now fuels my anger even more.  DAMN that he had to wonder and worry and that he still somehow thought he needed to apologize for having gotten brain cancer.  Not right, not fair.  Add that to the list.

Dad wasn’t ever one to over-think or really contemplate the “why” or “why not” of things; before he got sick, he used to joke around about the saying, “It is what it is.”  “Well, what else would it be?” he’d say facetiously.  

But I questioned, and, when I started to realize there would be no answer, I said, “It’s not fair!”  It really isn’t fair, is it?  

And yet, it doesn’t escape me that none of us promised a perfect life nor does it that despite the fact that what we went through was terrible, it could have been worse.  I’m sure most people in a tragic situation want to know why it happened.  I guess it really doesn’t matter, though, because the fact is that it did happen, and things cannot be undone or changed.   If I knew why would it make me less sad; would I miss my dad less?  Maybe I would be less angry, but of course that is pure “grass is greener” thinking.

I know that I am so very lucky to have had my dad in my life for as long as I did, and I still consider him to be an important part of my life and my perspective.  But I struggle all the same, and again and again my thoughts come back to the same rejoinder: “It’s not fair!”

I used to hate it when I was a kid and I heard a grown-up say, “No one ever said life was fair.”  I always wanted to say, No kidding, but how is pointing out that something isn’t fair any different from commenting on the weather?  It is what it is, and no one said it wouldn’t be, but it kind of helps to say it out loud.  

I can’t imagine a scenario where a person would be told he is terminally ill, and think oh, yeah, well, that’s fair.  That’s ridiculous!  I am trying to come to terms with the fairness issue, the anger, and the burning in my gut, and I'm sure it would be easier if I could stop comparing and thinking about what I think should have been.  I know what I have to do, to move on past the Anger, to honor my dad:  change my perspective. His death challenged me and made me acutely aware that our paths are never certain. A traumatic loss challenges our belief system and the core of life's assumptions, and acceptance is a major hurdle when death is traumatic and/or sudden (and I do consider my dad’s to be both). Telling the story is supposed to help make sense out of the senselessness. I’m not sure that goal will ever be accomplished for me, but, just like my dad did, I plan to give it my all and then to focus on feeling lucky for what I have and have had instead of the alternative.

I believe that imagination is stronger than knowledge -

That myth is more potent than history.

I believe that dreams are more powerful than facts -

That hope always triumps over experience -

That laughter is the only cure for grief.

And I believe that love is stronger than death.

 ~ Robert Fulghum

Denial - Six Months Later

There is an old Chinese proverb that says, “You cannot prevent the birds of sorrow from flying over your head, but you can prevent them from building nests in your hair.”

Denial has been a better Friend to me over the past 9 months than I ever would have believed it could be.  Yesterday marked the six-month point since Dad went on ahead.  SIX MONTHS!  That makes me sick to my stomach.  The hourglass is glued to the table and I want to throw myself to the floor and beat the ground with my fists, like a two year-old child.  Believe me, if I thought that would help anything or make me feel one iota better, I would do it!

I’ve heard the transition between this world and the next compared to the metamorphosis of a caterpillar to a butterfly.  I don’t like this metaphor, though; I prefer a tree turning into petrified wood. 

I believe my family and I did everything we knew to do to help Dad while he was sick.
I believe Dad is ok, but I’m not sure I will ever be.  I don’t even know what “ok” is anymore.
I believe that I am a different person than I was nine months ago.
I believe that in some ways I am stronger than I was before Dad got sick, but in even more ways I am much more fragile.
I believe Dad wants me to be truly happy; I'm just not sure I can make it all the way there without him.

I wonder how this is affecting my family.
I wonder how this is going to get better.
I wonder how I will remember this time and the “me” of now.
I wonder if I won’t always remember his face, his voice, his pride, and his pain and if there is a way that I can MAKE SURE that I do remember it all.
I wonder what comes next.

I see the birds circling over my head, and I am doing everything I know how to do to keep them from nesting in my hair.