Ironwoman

I recently read an article about a woman that I find to be very inspiring.  Her name is Kristin McQueen, and here's her story:

Ten years ago Kristin was diagnosed with metastatic thyroid cancer.  Since then, she has had fifteen major surgeries and has undergone various cancer treatments including radiation on her brain.  To date, she has finished seventeen marathons and nine full Ironman competitions.  She has continued to train during her fight with cancer, she says, because when she's out there on the road she is in control, not cancer.  I think that's pretty badass. 

“Ironman is so much more than an endurance race," she says. "It is not about simply propelling myself 140.6 miles for kicks, it’s about challenging my limits and seeing what’s possible. It’s about reclaiming my body after five neck surgeries, two rounds of radiation, ten brain surgeries, and a slew of acquired physical challenges. It’s about not giving into all the limitations that cancer and its buddies have imposed on me, but viewing them as challenges that ultimately make the race even sweeter by overcoming them. It’s about going from not being able to open my eyes without getting sick, having difficulty sitting upright and being too weak to stand by myself to completing one of the ultimate tests of human endurance. It’s about raising money so that nobody else has to go through what I have. It’s about remembering those who have passed and honoring those who fight every day to live a 'normal' life despite a disease that tries to tear them down.”

As anyone who follows Ironman competitions knows, the Ironman Championship is held in October each year in Kona, Hawaii, and participants in the race have to qualify to enter.  It's "the big one," the granddaddy of all triathlons and one of the most rigorous events in sporting.

This year, the World Triathlon Corporation is giving seven athletes the opportunity to race at Kona though a program called Kona Inspired.  Each entrant in the contest has uploaded a 90-second video showing how their story relates to the theme of the contest, which is "Anything is Possible," and those who get the most votes will get to enter the race.  Kristin wants one of those slots.

If you are also inspired by this Ironwoman, here's how you can help, in three quick and easy steps:

1. Watch this video.
2. Vote for Kristin every day between now and May 7, 2013.
3. Share the info on Facebook and Twitter and any other social media feeds you have - and email the link out to others who may not be into social media.  Ask everyone you know to vote for Kristin!

Kristin, sporting a "SUCK IT, CANCER" message during a race

For at least a dozen years before he got sick, my dad always called or emailed me ahead of time to alert me to whenever an Ironman triathlon was coming on TV so I could watch, and many times he called me on the phone during the race so we could talk about it.  Every single time I have watched an Ironman on TV, I have cried.  I don't mind admitting it; I find not only the talent but also (and probably especially) the dedication and just the raw guts that it takes to go the distance so awe-inspiring, but it's the stories of the back-of-the-packers that get me going every time.  Even if you're not an Ironman fan (an Ironfan?), you know the storyline: the thrill of victory, the agony of defeat. I'm not sure which trumps which: the tears of the competitors who realize they will not be able to finish - or the tears of those who are crossing the finish line.  Either way, I can't imagine watching the race without being affected by those stories.

My dad wanted so badly to finish an Ironman competition; just a few days before he got sick - which was just a couple of weeks before his debut Ironman - he said he hoped to finish the event in less than twelve hours but that he would be happy just to finish at all.  After months of training and miles and miles on the road and in the pool, his chance to compete in the Ironman-North Carolina in 2010 was stolen from him by cancer, so unbelievably sad and so damn unfair.  As Kristin says, "Cancer is bullshit!"

Kristin has succeeded in finishing an Ironman - in fact, nine of them!  Most people feel they are giving their all when they finish a 5K, even if they are 100% healthy; Kristin has far surpassed that, while battling cancer. By any standard, she is already an Ironwoman, worthy of great respect and admiration for her athletic accomplishments.  The championship race in Kona, though, is within her reach, and I can't think of anyone who better embodies the idea that anything is possible.  With our help, she can make it there.

Good luck, Kristin; cancer can indeed SUCK IT!  I look forward to watching you amongst the other participants in the race on TV in October.  I can guarantee that I'll be watching - and crying.

The Flow of Grief

Today is the 5th of the month, and, as on this day every month over the last 25 months, that date results in an exacerbation of grief for me, because it is the day of the month that my dad went on ahead.  

I wonder if the 5th of the month ever won't be like this, if it will ever just flow by like the rest of the days on the calendar, and I wonder if it will hurt even more when the realization hits me that it has somehow slipped by unnoticed.  

From the moment I opened my eyes this morning, I felt the grief a little heavier, like a blanket that's too thick for the temperature in the room.  I plodded through the morning routine and made it out the door on time, but then, on my drive to work, I saw a car exactly like my dad's, an army green Mini-Cooper with a customized bike rack on the top.  

In an instant, tears filled my eyes.  I felt like I'd been punched in the gut but weirdly also a little bit comforted; feeling that it was a sign from my dad, I felt both like I'd gained something in experiencing that connection with him and like I'd suffered a loss again with the thought that the only contact I can ever have with him is transcendent. 

The unpredictability of grief is something that gets to me time and time again.  I like patterns and predictability; I don't like surprises or disorder.  All along I've felt like I wanted, or actually needed, to know - how will this go?  What's the plan?  How long will it last?  When will I feel like I have a grip on this grief, if ever?  

In the beginning, I told myself I could take it, if I only had an idea of how long it would go on.  And if I had some kind of rules or guidelines for getting through it.  When I realized there was none of that type of knowledge or information to be had, I found that pretty much all I could do was to cry.  We all cried, to each other and alone.  We worried about each other and we worried about ourselves; we wondered if this was how things would always be, and we wondered if we would survive the hardest thing that any of us had ever gone through.

So far I've just been muddling through it.  And the change - and the order to it and the flow of it - that I've started to notice, one that has come about at some imperceptible point in time, is that I have started to be able to reflect on the road I had traveled, to see some ribbon of road behind me as I glance in the rearview mirror, even as I have continued to trek along the same route, and I have started to see some differences in myself and in my grief ... not "progress," really, but observations about the path I have traveled as part of this process. 

Maybe it's just familiarity with grief, almost a relaxed intimacy like a couple who has been together for awhile or like shoes that are worn in but not worn out.  Certainly part of it is a realization that there is no standard of excellence in this process, just getting through it, hopefully intact. 

                           "I pick up a stone that I cast to the sky, hoping for some kind of sign."

I can smile most of the time these days when I see a photo of my dad, and I can usually talk about him without the extreme sadness and devastation that used to bubble right up to the surface so quickly.  I can laugh at some of the inside jokes that he and I shared, even though I realize that I'm the only one left on the inside of those now; I can usually think about something that he should be here to experience or to participate in now and not fall apart.  I can go to sleep most nights without feeling like I need to beg into the dark for a good dream about him.  Much of the difficulty is still there, though; I think I've just gotten more adept at managing it.  

I used to be a lot more inflexible - maybe even close-minded or harsh - in my views about certain things before my dad got sick.  I must admit: I did the same thing about certain things before I had children of my own; I thought I had at least some of the answers, and then reality hit me and I realized that I didn't.  I spent a lot more time with the "my way or the highway" type of thinking going on in my head than I do now.  

There's a certain amount of perspective that growing up  gives to a person - some of it good, some maybe more realistic than good, but nonetheless having our views changed over time is just part of life.  It's almost kind of metaphysical the way perception can be divided up over the course of a lifetime: either you think you know, or you know you don't know. 

But then comes grief, and that's a game changer on an entirely different level.  I think for most people, grief softens the edges of what we worry about, of our priorities, and maybe even of our philosophy about things.  For me, going through the trial of my dad's illness and living with the grief that has come from his death has also blurred lots of things.  I'm less sure about certain things - many of which I have written about and will continue to write about - and that can be stressful, confusing, and exhausting.  But one thing that I think has actually been a change for the better in this process is the mitigation of my tendency to cast judgment on others in general; not only have my views on some things softened, but I guess so have I.  

Here's what I know for sure about grief: there is no "right way" to get through it.  Each person brings a different set of circumstances, different coping skills, and different needs to the situation.  We may share some of the same emotions and sometimes even thought patterns as we travel down the road, but, as we are all unique individuals, so is the exact nature of our mourning and our grief.

In the weeks and months after my dad went on ahead, my first instinct was to isolate myself.  I'm not sure why, exactly; there are probably a whole host of reasons that went into that propensity.

With the encouragement of my family, though, I tried to get out and do things socially, although, truth be told, I didn't really feel like leaving the house most of the time. 

Through phone calls and sporadic visits between the different places where we lived, my siblings and my mom and I all stuck together as much as we could, but at the same time we all did different things to keep ourselves together in the midst of the grief, to ward off the grief, to get through the days that were so much tougher to get through than I'd imagined.  Wait a minute, scratch that:  I actually never even took the time to imagine what life would be like without Dad, until we were without him.  I guess that, like Dad used to say about worrying being a waste of time, I felt that punching through the unbelieveability to picture the sadness, the absurdity of that life, even when he was so sick, was just too far out there to be a reasonable use of time for me - it would be like me thinking about jumping on the space shuttle and going to the moon right now.   

I recently looked back at something I wrote very early in my grief, a jotted-down Q and A with myself. I wrote, "How can I get through this, how can I go on, what can I do?  I will probably end up sleeping too much, drinking too much, not eating enough, walking around in a stony silence, and I hate all of those ideas."  For better or for worse, I actually missed the mark on all of those things.  A lot of time at work and around town, I felt like a fraud, as if nothing out of the ordinary had happened, as if I were the same. I felt lost, but I knew where I was and I knew I didn't want to accept it.  I didn't know where to even begin trying to figure out how to live without my dad or how to live with the sorrow. 

In the immediate aftermath, my mother, of course, was the one still at the house where Dad was supposed to be with her, with the most dramatic life change, and she was the one that we worried about the most.  Her form of coping initially seemed to come in the form of trying to re-organize her house; it was as if she was trying to gain some of the control that had been lost the moment we heard Dad's diagnosis.  In my corner of the world, I made a list of the things that angered me, in an effort to keep from exploding in my fury, and of questions to which I knew there were no answers.  I tried different things, many of which I've written about since.  One of these was my longtime balance: running, which failed me in that role; for the first time ever, running didn't feel right to me.  It wasn't physically therapeutic and it wasn't emotionally therapeutic; it felt more like I was trying to chase down the answers to an interminable stream of runaway questions.  It hurt, something I was used to and was well experienced in in the physical sense, but the pangs of emotions that flooded my mind and my body on these runs were difficult to bear. After awhile, I gave up on it, and only recently have I begun to try it again, intermittently, as it seems like the flow of the grief and the things that come along with it allow.

Looking Back

Sometimes I think back to the time when my dad was sick and I wonder how we made it through what we did.  Getting through those days - and the months of grief since he has gone on ahead - have definitely been the toughest thing I've ever had to do.  It's seemed insurmountable at times, and sometimes it still does.  I've learned a lot along the way about coping and perspective and life in general, though, and hopefully those lessons will continue to carry me through the rough waters of the ocean of grief in the time to come.  

When I look back now at the things I did to get through the weeks after Dad's diagnosis, some of it's a blur, but other parts are as clear as if they'd just happened yesterday.  Some of the memories bring a smile to my face; others make me feel like I've been punched in the gut or start a stream of tears that usually lasts the rest of the day.

One thing I remember is how I preferred to be asked how my dad was instead of how I was; I could give concrete information about his status and what was going on medically with him.  As far as how I was doing - what could I say?  The possible responses were just too overwhelming and confusing and sad.  If pressed, usually I just said, "I'm hanging in there," as if there were another option to that.

Another thing etched in my memory from the time after my dad's diagnosis is the amount of advice we got from so many different sources.  I guess people tend to feel compelled to offer advice to cancer patients and their families - and to those who are grieving.  We heard all kinds of advice - spiritual counsel, tips for dealing with chemo and lack of sleep, and so many more medical pointers from our well-meaning friends and some extended family members.  Most of it was welcome, though I must say that on some days I just wasn't in the mood to get that kind of input because I was too busy/too stressed/too sleep-deprived/too whatever to be receptive to much of anything.  So many times what we were being told were things that didn't apply to my dad or to his type of cancer.  Some days I just wanted to cry and others I just felt like beating someone up and cussing, but, really, with all that needed to be done and with the positive front that we were putting on for Dad's sake (and each others'), that wasn't really an option.

One thing I realized in the midst of all of the suggestions about coping with cancer - and later with grief - though, is that, even though I don’t believe that anyone else can really truly understand how I feel or what I have gone through because of the uniqueness of every situation and every relationship, the fact that other people seem to want to understand and make the effort to reach out is almost as good. 

Even having recently been in the seat of the person getting all of that advice, though, when I hear about someone who is going through something like what my family did, it's really tough for me to avoid giving out my own brand of advice.  I'm not sure why that is: it's certainly not that I think I'm an expert on cancer, or chemo, or grief, or ANYTHING; maybe it's because it's human nature to want to do SOMETHING to help in a crisis, and that seems helpful, despite the fact that I know it wasn't always to us.  Maybe because what happened to us was so devastating and awful that I want to do anything I can that might possibly somehow spare someone else from going through the same things.  

Finding positive stories about people with the same kind of cancer that my dad had helped me in the early stages of his illness; obviously, I thought that if SOMEBODY out there had outlived the prognosis of that diagnosis, that meant my Superhero Dad could, and I felt empowered by others' stories of strength and bravery.  I was trying to figure out what their SECRET to survival was so that I could replicate those conditions for my dad.  Early on, I saw this quote by one of the most highly respected neuro-oncologists in the country, Dr. Keith Black:

If you've recently learned that you have a brain tumor, keep this in mind: YOU ARE A STATISTIC OF ONE.  No two tumors are alike.  No one else shares your genetic makeup and your unique brain structure.  This doesn't mean that you have to face this journey alone.  It means that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you.

I clung to that quote like a shipwreck survivor to a piece of driftwood; besides the occasional pang of complete denial when the message of "This isn't really happening" flashed through my mind, Hope that all of the terrible statistics and the devastating prognosis wouldn't apply to my dad was all that got my family through each day.  As Dr. Henry Friedman, one of the big-time neuro-oncologists that I talked to at the Brain Tumor Center at Duke, said, "Hope provides the patient and their family the strength to continue to battle no matter how unfavorable the odds may appear to be."

From my current vantage point, I know that, in fact, you almost have to have that sense of hope as you round each corner when you have no sense of certainty about where the road will lead after such a shattering diagnosis.  Hope is really all that keeps you afloat some of the time - well, that and the love you feel for the person who is sick.

Another thing I did to buoy our Hope is to reach out for support and information through some online communities like Cancer Compass.  There I connected with some longterm GBM survivors, one with whom I emailed back and forth to get recommendations about the specific treatment protocol he was on, and the other of whom called me on the phone with words of encouragement that I later passed on to my dad and others in the family.  The second survivor, a woman about my dad's age, had been diagnosed almost 20 years before (!!!) and, although she had had to make some adjustments to her lifestyle because of some of the side effects of the treatment (mostly memory issues from the radiation to her brain), she said she was living a good life.  When she said she had taken up bird watching as a hobby to fill her days since she'd had to retire about midway through the years of on-again, off-again treatment she'd endured, and I swallowed the lump in my throat as I tried to picture my dad sitting on his back porch, watching birds all day.  We will adjust as needed, I told myself - all part of the Whatever It Takes attitude that I was so sure would carry us through.  I desperately wanted my dad to be one of the ones who made it through to the other side of the time frame we'd been given; I knew that he could be a powerful motivator and a dynamic speaker, and so I let myself dream a little that he would one day be in a position to help by telling his success story to others with such a devastating diagnosis.

I became almost consumed with statistics while my dad was sick as I worked to convince myself and other around me that Dad would beat the odds.  I knew that there were so many variables that affect "outcome" (what a harsh clinical term that is), but it seemed like Dad had most of the good ones on his side (except for excision of 95% or more of the tumor).  I guess when someone you love gets a terminal diagnosis, almost everyone grasps onto the hope that their person will be one to beat the odds.  It's what we have to do; it's human nature, I guess, to think that fighting and whatever else you've got in you will be the deciding factor instead of cold hard Fate. 

While my dad was sick, I literally couldn't sit still, whether I was physically with him or not.   The sound of silence, to me, sounded like a ticking time bomb, and the voices in my head carried on an endless litany of things To DO, things I guess I believed might help my dad, things I supposed might give me some sort of control over a situation that was spinning out of control, sometimes in slow motion but most of the time at a mindblowingly rapid rate.  During times when I had to sit still like when Dad was trying to sleep, I played Words With Friends on my phone, I wrote in the Notebook, I wrote long emails to the other "inside" family members who were also involved in Dad's care, and I updated the Care Page.  I couldn't watch TV - I was way to consumed.  I read A LOT, anything and everything I could find about GBM.  I took copious notes and made long lists of ideas and questions, mostly related to long-term survival, things that I thought we'd need to know on down the road to improve Dad's quality of life. 

One odd thing that I did at a few points during that time was laugh; it really was the embodiment of the expression, "Sometimes, you just gotta laugh."  It seemed to be so closely related to crying, which I did a lot of then too, although that was more challenging because I didn't want Dad to ever see me cry.  The hurt and the uncertainty was so present in those weeks that it seemed crazy, almost laughably out of control.  It was so tempting to start to feel unlucky, but then Dad would say or do something that would remind me of just how lucky we were in that moment, how it could always be worse, and how the only thing that we could really control at all was our perspective.

“Life is 10% what happens to you and 90% how you react to it.”  ― Charles R. Swindoll

How You Can Help Me (Author Unknown)

I came across this passage today and thought it was worth sharing ...

HOW YOU CAN HELP ME

~author unknown

Please talk about my loved one, even though he is gone. It is more comforting to cry than to pretend that he never existed. I need to talk about him, and I need to do it over and over. 

Be patient with my agitation. Nothing feels secure in my world. Get comfortable with my crying. Sadness hits me in waves, and I never know when my tears may flow. Just sit with me in silence and hold my hand. 

Don't abandon me with the excuse that you don't want to upset me. You can't catch my grief. My world is painful, and when you are too afraid to call me or visit or say anything, you isolate me at a time when I most need to be cared about. If you don't know what to say, just come over, give me a hug or touch my arm, and gently say, "I'm sorry." You can even say, "I just don't know what to say, but I care, and want you to know that." 

Just because I look good does not mean that I feel good. Ask me how I feel only if you really have time to find out. 

I am not strong. I'm just numb. When you tell me I am strong, I feel that you don't see me. I will not recover. This is not a cold or the flu. I'm not sick. I'm grieving and that's different. My grieving may only begin 6 months after my loved one's death. Don't think that I will be over it in a year. For I am not only grieving his death, but also the person I was when I was with him, the life that we shared, the plans we had, the places we will never get to go together, and the hopes and dreams that will never come true. My whole world has crumbled, and I will never be the same. 

I will not always be grieving as intensely, but I will never forget my loved one and rather than recover, I want to incorporate his life and love into the rest of my life. He is a part of me and always will be, and sometimes I will remember him with joy and other times with a tear. Both are okay. 

I don't have to accept the death. Yes, I have to understand that it has happened and it is real, but there are some things in life that are just not acceptable. When you tell me what I should be doing, then I feel even more lost and alone. I feel badly enough that my loved one is dead, so please don't make it worse by telling me I'm not doing this right. And remember, I was a capable adult before his death and I still am.

I don't even understand what you mean when you say, "You've got to get on with your life." My life is going on, I've been forced to take on many new responsibilities and roles. It may not look the way you think it should. This will take time and I will never be my old self again. So please, just love me as I am today, and know that with your love and support, the joy will slowly return to my life. But I will never forget and there will always be times that I cry. 

I need to know that you care about me. I need to feel your touch, your hugs. I need you just to be with me, and I need to be with you. I need to know you believe in me and in my ability to get through my grief in my own way, and in my own time. 

Please don't say, "Call me if you need anything." I'll never call you because I have no idea what I need. Trying to figure out what you could do for me takes more energy than I have. So, in advance, let me give you some ideas: 

(a) Bring food or a movie over to watch together. 

(b) Send me a card on special holidays, his birthday, and the anniversary of his death, and be sure to mention his name. You can't make me cry. The tears are here and I will love you for giving me the opportunity to shed them because someone cared enough about me to reach out on this difficult day. 

(c) Ask me more than once to join you at a movie or lunch or dinner. I may say no at first or even for a while, but please don't give up on me because somewhere down the line, I may be ready, and if you've given up then I really will be alone. 

(d) Understand how difficult it is for me to be surrounded by people who seem so happy, to walk into events as if my life is the way it was, to feel out of place in the same situations where I used to feel so comfortable. 

Please don't judge me now - or think that I'm behaving strangely. Remember I'm grieving. I may even be in shock. I am afraid. I may feel deep rage. I may even feel guilty. But above all, I hurt. I'm experiencing a pain unlike any I've ever felt before and one that can't be imagined by anyone who has not walked in my shoes. 

Don't worry if you think I'm getting better and then suddenly I seem to slip backward. Grief makes me behave this way at times. And please don't tell me you know how I feel, or that it's time for me to get on with my life. What I need now is time to grieve. Most of all thank you for being my friend. Thank you for your patience. 

Thank you for caring. Thank you for helping, for understanding. 

And remember in the days or years ahead, after your loss - when you need me as I have needed you - I will understand. And then I will come and be with you.

                Louis Armstrong - one of my dad's favorite musicians - playing "Blue Again"

Valuable Advice

Someone asked me recently what the best advice that I was given after my dad went on ahead was.  My answer involves words of wisdom that were imparted to me by three people:

The day after my dad died, one of my friends said, "Stay strong," which was a sentiment several others had also expressed to my family that day and during my dad's illness, but this friend added two more words that gave a whole new meaning: "... or don't."  I'm not sure that I fully grasped the meaning or the astuteness behind those words that day, but since then I have come to understand and appreciate the message more than I can adequately express.  From my perspective, the directive "Stay strong" is given out way too often to people who are going through a difficult time.  These days, when I hear that said to someone, I want to ask the person who says those words, "Why?  What is the point?  And, really, what other choice is there?"  Like the meaning behind the words my friend said to me on one of the hardest days of my life, in my opinion, it's ok not to feel that you have to be strong when things are tough.  That's why you have friends, faith, or whatever else gets you through it.  Sometimes being told to "be strong" can put an undue burden on a person, sometimes it sets a goal that is unattainable, and sometimes it sends a message (albeit inadvertent) that the only thing those around the person want to see is him or her, being "strong."  Sometimes it feels better to fall apart for awhile in the midst of tragedy; sometimes doing so enables a person to regroup and to power on.  In any case, I much prefer my friend's message: "Stay strong, or don't!"

I still think about that advice regularly, and when I see or hear things like THIS ...

... it makes me want to respond by saying, "You can do both: you can smile and cry, hurt that he's gone and be happy that he was here at all, feel pain and sorrow and still cherish his memory.  You don't have to choose just one or the other."

The second piece of advice that I found most helpful was given more as a piece of information than advice, and it was actually said to me by two different people at two different times; the first person said it to me just after my dad had been diagnosed with cancer.  She had been through a cancer diagnosis and treatment with one of her parents and wanted to share her observation about how she and the other adult children in her family had handled things in distinct ways.  I thought back to her words many times while Dad was sick, not just in relation to how differently my siblings and I were trying to cope but to how every person in the family had his or her own role in helping and his or her own way of getting through to the next day.

After Dad went on ahead, the grief counselor that I went to had me do an exercise in which I was to draw a flower with petals on it and then write on each petal a different role that various people were playing to help me get through the grief process.  She gave an example of "This person listens when I talk about my dad," "This person takes some of the work load off me by doing chores I don't feel up to doing," and "This person lets me cry without asking me what's wrong."  Writing it out helped to remind me that people around me cared and were trying to help in their own way and that no one way was "better" than another.  

Part 5 – Surgery

Continued from Part 4

The surgical team came to get Dad very early on the morning of the day of the surgery.  The technical name for his surgery was a biopsy and debulking; the neurosurgeon wanted to get a sample of the tumor for diagnosis and remove as much of it as possible, which he said would relieve many of Dad's symptoms for the time being.  We had tried to get as much information as we could about what to expect so that we could be as prepared as possible for just before, during, and after the surgery, but many of our questions had gone unanswered and at that point we were all just fighting off sheer panic.  It was like that saying about the appearance of a duck:  we were calm and in control in front of Dad but paddling like hell beneath the surface just to keep afloat.  My mom, my sisters, and I made a pact that we would not cry in front of Dad before the surgery; our strategy was to exude calm confidence around him so that he would take that with him into the surgery. 

Right after they entered Dad’s room in the ICU, the surgical prep team very quickly disconnected the wiring that was hooked up to the monitors, hung the IV bags on the railing and unlocked the wheels on the bed, and rolled Dad’s bed out into the hallway.  “Tell your family goodbye,” the surgical nurse told him.  Fortunately, he was facing away from us at that point because with those words we were all fighting back tears with all of our might.  Whether it was intentional or not, though, Dad was casual; he gave us a wave and then started chatting up the nurse about how he thought it would be a great idea if hospital patients were allowed to have dogs sleep in their beds with them.  "I could have my dog Buddy right here with me," he told her, as he patted the empty spot in the bed by his legs.  

I remember watching his bed be rolled to the end of the hall and then turned so that he was out of our sight.  My eyes filled with tears that I couldn’t stop from spilling over.  I wanted to run after him and say, “STOP!  This is all a mistake!” or at least to give the surgical team a pep talk before they cut my dad’s head open.  I wanted to control what was happening, but there was no control to be had.  I turned to go back into his ICU room and was dumbstruck by the emptiness; I hadn’t realized that they would take him and his bed out of the room that now had almost nothing left in it.  It seemed so harsh, so foreboding, so threatening, and so sad.

My mom, my sisters, and I gathered our things and headed to the ICU Waiting Room, where we had been assured a phone call would come to let us know when the surgery had started and to update us every hour while it went on.  We were on High Guard; our stomachs were in knots as we paced and fretted over the next several hours.  It slayed me that we didn’t even know where in the hospital Dad was during that time; we had been directed to wait in that particular waiting room and so we didn’t even know on what floor the OR was located.  

It was the only period during the time Dad was sick that we had nothing to enter into the Notebook.  Time seemed to move at the pace of a snail, with one desperate hour dragging into the next.  One of my brother-in-laws set up the Care Page so that we could more easily update friends and family members on what was happening, and we tried to create an entry in the waiting room while we waited on an update on Dad, but the Internet connection and the cell phone signal in that part of the hospital were awful.  Actually, it was pretty symbolic for the way the communication between the surgical team and us was going – it was spotty and sporadic at best.

Waiting in that ugly, cold room that day, there was a tenseness that did not go away.  It was just too difficult to imagine what we could lose and so we only dealt with it in bursts.  We took turns holding it together and falling apart; I am sure that in my pacing I covered at least five miles within the walls of the hospital that day.  The sense of desperation and dread were palpable.

The phone in the waiting room did ring many times that day, although not all of the calls that came were for us.  We would literally jump out of our seats each time it rang; I am certain I broke my personal speed record each time I raced to answer the phone.  The updates were all sparse but good; things seemed to be going according to schedule even though for those of us waiting time seemed to be almost standing still during those hours.  Finally, at 1:15, the voice on the other end of the line told us the surgery was over; Dad was in recovery and the neurosurgeon would be up soon to talk to us.  We breathed a collective, tentative sigh of relief. 

However, for some reason the neurosurgeon didn’t appear until 4:15.  An hour before that, I had gone back into the ICU to ask Dad’s nurse in there to call and see what was wrong.  She reported that Dad was off the ventilator but still sedated and that she didn’t know why the surgeon hadn’t been up to see us yet.

When he did show up to usher us into the Room of Doom (You know you’re not going to get GOOD news when they take you in THERE!), he told us that Dad did indeed have the most aggressive and most difficult to treat type of brain cancer and that the prognosis was not good at all.  He told us that he had “managed to remove 80% of the tumor" and said the remaining part was “buried too deep in the brain.”  He offered us the name of a colleague of his, an oncologist whom he said was active in many clinical trials.  I wrote down everything in the Notebook and, when I had run out of things to write, I fell apart.

Continued here… Part 6 – Standing By

Here in My Heart

The measure of every other grief

Is held to my own:

Is it longer, heavier, more powerful than mine?

I feel like I'm alone.

Those who have told me that time will heal

I know to be far off-base

I, in fact, don’t want to be healed           

For fear of having memories replaced.

It doesn’t hurt to hear his name

It doesn’t bring him or his death to mind

The thought of him already is always there for me

Aching if it seems he’s being left behind.

As much as I know part of him lives now with me,

I also know that part of me died with him, too.

I’ve lost my umbrella, and I’m not sure how else to weather the storm

Or how to walk down this road anew.

I want to call his phone and hear his voice

Leave him a message and know he’ll reply           

I want to get a scribbled note from him

I want to see the wrinkles at the corners of his eyes.

I want to hear him singing

Making up the words he doesn’t know,

To tell him something I’m dreaming about doing,

And to hear his funny expressions like "Gung-ho."

I want to know that he still sees the good stuff,

The kids happy and doing well as they grow.

His impact, his presence is with us always;

This I want to be sure he knows.

I’m not sure how to carry this pain

That cuts me like a knife.

I really just want to sit and cry,

But I have to go on with life.

I want to tell him thanks

For being my lifelong teacher and fan

And that I’m so impressed and in awe

Of how he went out like a man.

I keep remembering seeing his light

And it seemed like it was fading away

I wanted so badly to go after him

And to beg for him to stay.

But after all he has done for me

It was time for us to part

I had to let him go on ahead

But I’ll always keep him Here in my heart.