Thursday, December 27, 2012

Struggling


Since my dad went on ahead almost two years ago and especially over the past year, I have been struggling with the fact that the way I see him in my mind is as he was when he was sick, but today when I happened upon a picture of myself helping him walk using his walker I was struck by the fact that he looked even more frail than I remembered.  So now I’m troubled by the fact that apparently I don’t clearly see him as he was well or as he was sick, although maybe the latter is for the better.  








It was excruciating to watch Dad struggle and to witness the physical and psychological effects of his illness as it progressed, especially because I felt that we had all but been promised that there would be improvement after he had gotten the "Magic Bullet drug," Avastin. My heart broke for Dad as I watched him struggle to grasp the severity of his illness, time and time again.  As long as I live, I will never forget the look in his eyes when he was struggling to get around on his walker one day not long after he got out of rehab and he stopped for a minute, obviously deep in thought.  I was holding onto the waistband at the back of his pants, and he looked back at me with tears suddenly in his eyes and said, "Am I handicapped?"  

"No, Dad!" I responded. "You've been through a lot, and you're having to work on some things, but you're going to get better."  I was so sure, and, from my perspective, so was everyone else around us, maybe not that he would be cured but definitely that his physical skills would improve with effort and with time.

But that didn't happen. He didn't get better; in fact, he got worse, and little by little his independence and then his life slipped away.  Or maybe I should say they were stolen, or ripped away from us, because saying they slipped away implies that we weren't holding on and fighting tooth and nail every step of the way, which we were, Dad included.

I don't think he realized that the end was very near for him those last couple of weeks; likely, the invaders in his brain - the cancer, the trauma from the seizure and the surgery, the chemicals in his body that collected as his organs were shutting down and could no longer filter out the toxins, and the array of medicines he was taking - clouded his knowledge of his rapidly worsening condition. I hope so - Dad didn’t deserve to be given a death sentence.  It was heartbreaking enough that the rest of us had to know what was coming down the pipe all too soon.  


Wednesday, December 26, 2012

In Search of Comfort


In the hours, days, weeks, and months after my dad went on ahead, I became aware of a phenomenon that I hadn't ever been in a position to notice before, and that was one of feeling as if I myself were the source of pain each time I had to tell someone else that my dad had gotten sick and that he didn't make it. I felt guilty and somehow responsible for the shock and the sadness that I witnessed descending upon each person as soon as the words left my mouth.  I felt as if I should be able to comfort them.  I wished I could spare them having to know what had happened and I wished I could explain why, but I couldn't do either.  Instead, I had to stand by and witness their pain, their sadness, and their grief, while I was deep in the midst of those feeling on my own. 


If I'd had to guess before I had any inside knowledge of one who has lost a loved one, I would have said that the worst would be when someone didn't know what had happened and I had to tell them.  But what I discovered was that the hardest thing to get through was when I knew someone knew how sick my dad was or even knew he had died but then they said nothing to me afterwards.  It felt like they didn't care, like it didn't matter to anyone except those of us who were so deep in our grief that we could barely function.  It was like salt in a wound; it was like watching and not be able to stop the waves from washing up on the shore and wiping out a one-of-a-kind sand castle in the process.


About six weeks after Dad went on ahead, my husband, my mom, and I attended a business convention that my dad had been a big part of for decades.  Everyone at the convention knew (had known? Damn I hate having to change that verb tense) my dad; he had known many of the people who were there since I was a child or longer and had served as a mentor for many of them over the years.  

The last time any of those people had seen my dad was one year ago, ten months before he died and eight months before he got sick.  They still thought of him as being the picture of good health; he was the guy who was the life of the party, working the crowd and cutting up on the dance floor at night and then heading up a meeting after an early morning run the next day.  People asked what had happened, and I didn't know how to respond. I could hardly have finished processing the series of events over the ten weeks.   Most of the people there had heard about Dad's illness and his death, but it was like they couldn't process it or accept it until they showed up at the convention and saw that he wasn't there for the first time in decades. His absence was blaring, to put it mildly.  In the midst of their shock and in what I guess was an awkward attempt to process the news themselves, several people told stories about other people they knew who had gotten some serious kind of cancer and had survived.  That didn't make me feel any better, and I don't think it served that purpose for them, either; actually, I think it only fueled their sense of disbelief.  We heard a lot of "I'm sorry's" but it seemed like mostly what was said was "I just can't believe it."  Yep, me neither, I said.  What I guess I wanted them to say was that sucks and I'll miss him too.  I wished they had something that would comfort me and my family; I wished I had something that could comfort them - or myself.  But there was no protection, and there was no comfort to be had.  


Monday, December 24, 2012

Trying to Fix Grief

I'm a "fixer;" I like to fix things.  Maybe that's one reason I'm finding the grief process to be so tough - because there's no righting this situation.

Not that I haven't tried.  I went through with three different counselors in search of a remedy not long after Dad went on ahead, each of whom didn't specifically deal with grief; I liked all of them at first precisely because they seemed to have a linear approach to how they laid out their sessions - my impression was that they were "fixers" too, and that seemed like a good thing to me at the time. 

About halfway through my second session with the first counselor, she asked me how I defined myself after the loss of my father.  What the hell does she want me to say? I thought, and I felt as if I had been sucker punched.  I felt like I was afloat in a sea of sadness on my best days during that time, and on many of the other days I felt like I was drowning.  How do I define myself???  I had absolutely no idea, and I knew it would be a long time before I could withstand even the thought of redefining myself without my dad here with me in this world. And so, without answering, I thanked her for her time and walked out the door.

Two sessions in with the second counselor, she leaned back in her chair, put each of her fingers together with each of the matching fingers on the opposite hand so that it looked like she was about to start doing the hand-gesture that goes along with "Itsy Bitsy Spider," and said, "I think what you need to do is to realize that you were lucky to have been given the time to say goodbye to your father."  Then she just sat there looking at me expectantly, as if she thought that some giant epiphany was going to come to me in that moment.  Anyone who has ever been through the death of a loved one after that person has had to suffer through a terminal illness would not find comfort in that statement, particularly at that point in the grief process.  Without a word, I stood up and walked out.

I waited a couple of weeks and then, mainly because I was concerned that I still wasn't sleeping much at all, I tried again.  About 45 minutes into the first session with Number 3, I got "It's already been six weeks since your loss.  You should ask your primary care physician to write you a prescription for an anti-depressant."  The message I took from that was that I should have already moved on, that six weeks was plenty of time to have moved through the grief, and that I should get over it, and that's really the last thing I wanted to hear.  Strike three.

Luckily, through a friend of a friend, I found my way to a grief counselor about six weeks after that, and that was a different ball game all together.  That made me realize the lack of training and knowledge in the area of grief that the other three had.  The grief counselor let me talk about my experience and my feelings; she had posters on the walls of her office that said things like, "To live in the hearts we leave behind is not to die" and, my favorite: "Every grief needs a thousand tellings."  


More than one physician, when I've gone in for a check-up or for a minor physical complaint and then when I've brought up the subject of my struggle to try to figure out how to cope with the loss of my father, has offered to prescribe medication as a solution for grief.   As society does so often these days, these doctors have seen grief as a sickness, as an imperfection, as something that needs to be "gotten over."  I didn't want to be on medicine.  I know it's something that's helpful or even necessary for some people, and I told myself that I wouldn't completely rule it out as an option for myself on down the road -  but I instinctively realized that to numb the feelings associated with the loss of such an important person in my life at that point would not only put the feelings associated with grief on hold temporarily but also would likely numb me to the goodness in my life, and I knew that the latter was all that was keeping me going.  As I had learned from my dad, I mustered all the courage I could and forged ahead, for the most part with the belief that someday, somehow I would find a way to make it through.  Because one thing that I've learned about grief is that not only is there not a "quick fix" for all the things that come along with it, but there isn't really a "fix" at all.      

Sunday, December 23, 2012

Courage


"Courage is rightly esteemed the first of human qualities ... because it is the quality which guarantees all others." ~Sir Winston Churchill

When I was a freshman in college, I took a class during which we learned how to rappel.  The culmination of the instruction of that part of the class was that each student had an opportunity to descend by rope from the top of a tower that stood three stories high. 

At the beginning of the semester, in my 18 year-old mind, that endeavor didn't seem to me like it was going to be too tough.  I wasn't scared of heights, and I was in pretty good physical condition.  I listened carefully to the instructor talk about the technique and the safety information, and I watched videos of others rappelling.  When the day of the descent finally arrived, I confidently climbed up to the top of the tower, hooked in to the roping gear, and backed up to the edge.  And then I looked down - and that's when the fear hit me.


I tried in vain to talk myself into stepping off the ledge for several minutes.  The instructor, who had positioned another instructor at the top, shouted words of encouragement to me from down below.  My legs just wouldn't move.  Finally, the guy at the top said, "The longer you stand there, the harder it's going to get to take that first step.  On my count of three, you're going to step off.  One, two, ..."  I took a deep breath, and I did it.  The warmth of the sun on my face, the feeling of gliding so freely, and the big burst of adrenaline all hit me at once, and I loved it.  It was, in the true sense of the word, awesome.  

But the best part of the descent was at the bottom, and it came from the words spoken by the instructor, words that I have thought about many times since that day:  "And that," he said as he turned from watching me to address the rest of the class,  "is a perfect example of the difference between courage and bravery.  Bravery is something a person can be born with, but courage is something we have to dig deep to find.  It's natural and often even smart to be afraid, but, as long as you are prepared, you can't let that stop you from forging ahead - and that's courage."

Before that day, I had never considered that there was a difference at all between courage and bravery; I actually thought they were synonyms.  Upon further consideration, though, I began to see that there is a distinction between those two words.  Bravery is the ability to confront pain or danger when one is not afraid.  Courage, on the other hand, is the ability to take on a difficult situation or pain in spite of the presence of fear.  Courage requires using a thought process in order to overcome a natural emotion; it is the willful choice to forge ahead regardless of the possible consequences.  A courageous person understands the risks of the task but is driven to participate anyway for a greater purpose.  

From my perspective, there are a couple of different types of courage:  Physical Courage, which often involves overcoming fear of the risk of pain or death to do things - like rappelling, getting up to try again after falling off a bike, running into a burning building to rescue someone, climbing a mountain, or undergoing a medical procedure.  Here's a video that gives a great example of physical courage (it's 17 minutes long but well worth taking the time to view it!):


And then there is Mental Courage, which may involve doing something that poses a risk of something negative socially happening, like embarrassment or rejection.  This includes things like standing up to a bully, giving a speech to a crowd, disregarding peer pressure, and being a leader.  It also encompasses ethics and doing the right thing, even when that puts one at risk for consequences such as disapproval of others.  It's pushing past a fear of rejection to put oneself "out there" by being true to one's own beliefs and essentially to oneself.  And that is how courage is linked to the most bonding of human traits: vulnerability.  A person who has the courage to accept that he isn't perfect but the depth to love himself and to see himself as worthy anyway not only ends up being a happier person but also gains a different kind of strength than cannot be gained in any other way.  And, in accepting himself as an imperfect being, he shows others that variances - and vulnerability - are the essence of the beauty of life.  


What I have taken away from that is the understanding that courage has to do with perspective and with the way we adapt to the challenges and to the circumstances of our lives.  

Without a doubt, what my dad had a great amount of physical courage, and I think that was likely something about him that a lot of people noticed and admired.  What I have found to be even more impressive about him, though, and what I hope to go out having had is the courage to be imperfect, the compassion to be kind to oneself and to others, the conviction to stand up for myself and for people and things that are important to me, and, last but not least, the courage and the confidence to show vulnerability, which, really, is the thing that connects us as human beings. Vulnerability, like the imperfections seen in granite, is what makes people unique, memorable, and beautiful. 


Friday, December 21, 2012

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.

Sunday, December 16, 2012

Connections


As a child, I loved nature and the outdoors. When I needed some alone time, I would often grab a plastic milk crate and, with that in hand, climb one of the pecan trees in our backyard.  High up in the tree, I would place the crate upside down in the branches and sit on it so I could relax as I felt the breeze blowing through the limbs and watch what was going on below.

One thing I've found since my dad went on ahead is a renewed feeling of that love for the open air and the peace that it gives me; it makes me feel some of the connection to my dad that I, like many others who have lost loved ones, am seeking - so much so that we often end up noticing, watching for, and even collecting things that remind us of our loved one.  Just like I did up in those tree branches many years ago, these days I find peace in the sight of a rainbow or a particularly magnificent sunset or a bird that seems to be looking right at me for an atypical amount of time.


A few months after my dad died, I mentioned in conversation with a friend that I derived a little bit of comfort in having some of my dad's things with me - an old shirt of his, a pair of his socks, a book of his with the corners of some pages folded over where he had marked his place.  My friend, who had been through the loss of a parent before me, told me that she understood, and she predicted that at some point I wouldn't feel as strong of a need to hold onto my dad's things because I would feel connected to him through my memories instead.  She may be right, but I'm not there yet.


For as long as I can remember, my dad had a favorite pillow.  He was always a little particular about things that affected the quality of his sleep; I guess that came from getting up so early to run for so many years.  For years while I was growing up, he had an orthopedic-type of pillow that he slept on every night; he even took it on road trips so he would have that one instead of having to sleep on a hotel pillow.  There were several instances when he left his pillow behind in a hotel room, and, when he realized his mistake, he called the front desk at the hotel and with his usual friendliness persuaded an employee to mail it back to him at home.

When I went to the hospital to be with my dad when he first got sick, I brought a pillow from my house.  The pillow case was one that my daughters had tie-dyed months before; I thought it would be good to have an extra one at the hospital for Dad or whomever was staying there with him to use, and I knew the original design of that pillow case would differentiate our pillow from one that was hospital property.  That pillow ended up following us along during the whole time Dad was sick, going with us from the hospital, to rehab, to the hotel where we stayed when we took Dad to the Brain Tumor Clinic at Duke, to my parents' house, to the hospital again, and finally back to my parents' house.  When we brought Dad home from the hospital the last time, we bought about a dozen new pillows to use to position him to try to keep him comfortable in the hospital bed; we encased all of them in blue pillow cases which we'd also purchased just for that purpose.  The pillow in the tie-dyed case wasn't needed anymore, and so I took it to sleep on, first at my parents' house and later at my own house.  I sleep on that pillow every night now; it, like the outdoors and like some of Dad's things from when he was healthy, bring me some comfort in an unexplainable way, especially at night when I seem to need it the most. 

The pillow that followed us

I imagine that it is a universal struggle for those of us left behind to decide what to do with the belongings of the person who has gone on ahead.  Dad would tell us to get rid of it all; he'd think we were being silly and sentimental, and he would point out that it's just stuff.  And it is, but his possessions marked his place in the world, and, in a way, I feel like they still do.  

Everything that changes in my parents' house - even in my house and even in the world around us - is something that takes me further away from him.  The first few times I was at my parents' house [I know I should just call it my mom's house, but sometimes I revert back to referring to it as theirs] after Dad died, I found myself looking around for dust - not to check my mother's housekeeping skills but because I had read somewhere a long time ago that household dust is made up of mostly skin cells, and so I reasoned that some of Dad physically was still there.  I felt - and I still do to some extent - desperate to hold onto anything that has the possibility of making me feel connected to him.  


Along the way, we've cleaned out and gotten rid of some of Dad's stuff; we donated some of his suits and most of the many pairs of running shoes that were crowding his closet.  It felt a little like ripping off a band-aid, except for the fact that it still hurts afterwards too.  Again, I am sure he would have wanted us to give those things to someone who will use them, but letting go of any of it is still a really hard thing to do.  I just don't want to lose any more of him.  




Thursday, December 13, 2012

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 -  


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.


Friday, December 7, 2012

The Tears That Followed


When I was growing up, my parents used to tell me that even if you have to have a good reason to cry, at some point you need to stop crying and move on - or you risk running out of tears.  I'm not sure if I totally believed them or not, but regardless I have never been much of a crier, until my dad got sick.  Since the time of his diagnosis and even more so since he went on ahead, I have officially become a crier.  And today, I'm here to say that evidently what my parents told me decades ago about running out of tears isn't really true - the tears do not ever dry up.  


On the night my dad went on ahead, when they took his body away, there was a sense of utter bizarreness, almost of an unearthly quality.  It felt like everything was happening in the midst of a fog.  Afterwards, somehow - probably from sheer exhaustion, both physical and emotional - my mom, my sisters, and I all slept for a few hours that night before we had to get up and start planning for the funeral.  Once we had made it through that, we knew we had to make ourselves eat, even though none of us felt like eating, and so we stopped by a pizza place on the way home from the funeral home.  "This is so surreal," I kept thinking, and it really was.  My brother arrived from out of state not long after we got back to my parents' house after lunch, and, after awhile, we resolved to do something instead of sitting around the house crying or in a daze.  

Someone suggested we go to get our nails done at the nail place near where my parents lived, the same place where my mom usually went and where we had taken my dad just after he'd gotten out of rehab, on the day before we'd left to take him to Duke.  

"Was it only six weeks ago that we were here with Dad?" I thought, with tears in my eyes, as we walked into the nail place.  When the woman who worked there and who knew my parents looked up and saw us, she asked, "Where's your dad?"  I couldn't bring myself to say the words "he died," and so I just stood there until my sister Jennifer said, "He didn't make it."  The woman and the other staff members there were very nice; I was grateful that they just expressed their condolences and then moved on to other more casual topics instead of asking for details.

I don't remember much from over the course of the next few days, just bits and pieces and feeling lots of sadness and confusion.  I was grateful that my family was there together and that many of our extended family members and friends had come to the memorial service, but the shroud of despair was so pervasive that it was impossible not to retreat into bouts of stunned silence and driving tears, both at regular intervals.  

It was really tough to leave my parents' house that Sunday; I wasn't sure how I was going to get through walking back into my house, when the last time I was there things were so very different.  I was operating on auto-pilot, I'm sure.  I remember one of my friends from work texting me that Sunday night to express her condolences and to suggest that I take some time off work; no, I told her, it's better if I keep busy.  I couldn't stand the thought of sitting in a quiet house with nothing but my thoughts and my tears.  

Looking back now, I think it's odd that I didn't think I should take any time off from work.  The ten weeks preceeding my dad's death while he was sick and certainly his death itself were the most traumatic experience of my life, and I was exhausted, hurt, and in shock.  So much so that I thought going right back to work was a rational decision.  But, as it turned out, I ended up with two extra days off, and I didn't have to spend them alone, because it snowed enough to warrant two snow days off from school that Monday and Tuesday.  I felt like Dad had sent me a gift, so that I didn't have to go back to work right away and so that I was able to grieve in the comfort of my own home with my kids there with me.  

I have this photo saved on my
computer under "Snow From Dad."

After that, though, I tried to hit the ground running.  I guess I somehow thought it would be back to business as usual, even though nothing felt "normal" at all to me.  In reality, though, I was in a daze much of the time.  The emotional pain, and the physical pain that came along with it, were almost more than I could bear.  The physical effects - the body aches, the back pain, the crazy appetite, the insomnia - were a complete shock to me; I had never heard that those things are part of the grief process, and they all compounded the difficulty of trying to cope with the sadness and the other emotions. 
A far as I can remember, I functioned well enough at work, but it was at a much slower than usual capacity.  Some days it was all I could do to get dressed and drive to work, often while crying, to fake being ok for the duration of the work day, and then to make it back home.  It was as if I was just going through the motions from the time I got out of bed in the morning until the time when I could get back in it in the evening.  At home, for the first time in my life, I let others take care of things like dinner and laundry and paying bills.  I often couldn't sleep at night; I spent a lot of time wishing with all my might that my dad would at least come back to me in a dream, and I was unbelievably tired.  Tired from not sleeping, tired from the grief, tired from crying, and tired from trying to keep it together.  It was beyond my capability to make plans or even very many decisions; I felt like I couldn't think straight or keep track of things, and in some cases I just couldn't make myself care about a lot of things that were going on around me.

If I had to choose one word to describe myself during those first weeks or maybe even months after Dad went on ahead, it would be "depleted." As I had done while my dad was sick, I read about brain cancer; sometimes it made me feel better, but mostly it just made me angry and sad and so I started to read about grief instead.  Eventually, I found my way to a grief counselor, and my sessions with her helped a little in that she told me each time I saw her that what I was feeling was "normal" and in that attending those sessions eventually led me to writing.  Sometimes I still wasn't so sure, though, that I was doing anything right or that I was going to make it through any of the pain, but I just kept plugging away, getting through the days and the nights, one at a time, because that's all I knew to do.

Dr. Albert Schweitzer said that he found there was “a fellowship of those who bear the mark of pain,” and that “sensitivity to human suffering does not stand alone and rootless.” We have all stood over different graves and have had different beliefs as to the fate of our loved ones, but our tears remain a universal constant and need no translation.

Sorrow makes us all children again – destroys all differences of intellect. The wisest know nothing.”
~Ralph Waldo Emerson


Wednesday, December 5, 2012

Moments

I think most people only have a handful of times in their lives when something is happening and they realize in that moment that they are going to remember it for the rest of their lives.  Our other memories, things we think about after the event has come and gone - they come back to us unexpectedly, out of the blue, without our having consciously collected them along the way. But the ones that we know will stay with us as they are occurring are extra special, because we get to live them live in real time and in memory. 

As hard as it is to think back on the time when my dad was sick, I realize that the fact that we were aware of the risk (probability) that his time was limited allowed us to pull in those memories while we were focusing on the specialness of that time. Some of the time, I was functioning in the moment, but I was also deliberately hoarding memories of what was going on. I wasn't trying to hold onto those things because I thought Dad wouldn't be around much longer, though; usually I was logging those moments because I thought he would beat the damn cancer and we would be able to look back and think this is how we made it!!  And even though it turned out we didn't, at least we were afforded those memories, both the good and the difficult, to remind us of the fierceness of our love for one another. 


I dealt with my dad's illness with staunch denial of the fact that the devastating prognosis could apply to us, and, looking back, I think it turned out to be for the better that I wasn't aware of many of the last times I'd have with my dad because of that denial.

In going through life, we tend to think we will always have more time, which leads us to think that it's ok to rush around, to put things other than our loved ones first, and to worry about the past and the future instead of letting everything else fade away and just appreciating the simple physical presence of those we love.  Hearing the words "brain cancer" allowed me to stop all of that and to recognize that I needed to just be with my dad and the rest of my family, even though I didn't let myself think that there wouldn't be many more opportunities to do that same thing.   

And afterwards, I had to see not just that I'd been wrong in thinking the prognosis was wrong, but I also had to realize another hard thing as part of the grief: when the dust starts to settle after the first time you lose someone that you truly love, in the darkness it hits you that your days together with everyone else that matters to you are numbered as well.  And somewhere along the way in dealing with the horror of that realization, you may see the importance of paying attention, of stopping to smell the roses, of committing the moments to memory, because doing so is one of the few things that may possibly help to ease the deep aching when we do have to come to find out that the lasts were just that.

All the inconveniences, the irritation, the stressing out over things, the wishing for things that don't really matter at all seem so insignificant, so stupid, and in some cases so selfish when we put it into perspective.  At some point, for all of us, it will be too late.  We have to do our best to capture those moments now, before they actually become lasts, before there is no hope of recapturing them, before the regrets set in and that's all that we have left.

I still have moments when I don't believe it really happened or that he's really gone, even now, 23 months later.  Damn I miss him. 

What I wouldn't give to see this smiling face again //
"There are no goodbyes for us.  Wherever you are,
you will always be in my heart."  ~Mahatma Gandhi

Saturday, December 1, 2012

Before


There are certain things that went on during the time when my dad was sick that I don't remember, especially during the last couple of weeks of his life when we were all so stressed out, so worried, so confused, so sleep-deprived, and so terrified.  It's like my mind blocked out some of those things, or maybe all of my energy had to be poured into meeting Dad's needs instead of moving things over into my memory bank as he got sicker and sicker.

Sometimes something said in conversation about an event that occurred in those weeks alerts me to the fact that there is some weird amnesia-like spot that seems to have been blocked in my brain.  My kids and my husband and even my friends and coworkers have mentioned things they remember from during that time that I don't. Recently, my daughter was talking about wanting to go back to a restaurant near my parents' house; she said that we had been there while my dad was in the hospital.  I, however, have no remembrance of ever having gone there.  


Sometimes these days a memory from during that time comes back to me from out of nowhere, and other times there is something that triggers that recollection, causing me to flash back to something that happened that I didn't remember previously.  

That's what happened to me yesterday when I was driving in my car and I heard a song come on the radio that caused a memory to come flooding back:

On the Sunday after the memorial service we held in Dad's honor, my husband, my daughters, and I left my parents' house to drive back to our house.  When we stopped at an exit along the way and went into the gas station, there was a song called "If You Get There Before I Do" playing on the overhead speaker.  When I'd first heard it, well before Dad had gotten sick, I'd thought it was one of the saddest songs I'd ever heard, but that was nothing compared to how devastatingly sad I found it to be that day. When I recognized the song, I could hardly breathe.  I made my way outside into the freezing air as fast as I could so that I didn't hear the music anymore and just stood there with tears streaming down my face until my husband and my daughters came back outside.  Maybe they'd gotten used to the craziness that seemed to have become part of me in those days or maybe they didn't notice how upset I was; they didn't say anything about my hasty departure.  I think I mumbled something like, "I can't listen to that song; it's a really sad one," and then we piled back into the car and I put my sunglasses on to hide my tears as we continued down the highway.



Saturday, November 24, 2012

Follow-up on Foster the Cat

One question I get asked pretty often by people who've read my family's story is this: What ever happened to Foster the cat?  



As I've mentioned, my mom is not a big fan of felines.  We had various pet cats while I was growing up and my parents had a cat named Sport who had passed away a year or so before my dad got sick, but Dad was always more the cat person between the two of them.  

I think I can speak for my mom when I say that there were no regrets about having gotten a cat for my dad after he got out of rehab; his Bucket List had been revised in such a drastic way when he got sick, and there weren't a lot of things on his list during that time that he could do because of the impairments that came from the tumor and because of the treatment he was undergoing.  Getting him a kitten was one of the few requests we could fulfill for him, and we were happy that his wish was able to be granted.  


Dad loved having Foster; in fact, he said that getting Foster was the "second best thing" that had happened to him since he'd gotten sick. ("The first best is having my kids and my grandkids around more," he said.)  He and Foster napped together and hung out together, and, when they weren't doing that, Dad enjoyed watching Foster play.


Unfortunately, though, Dad didn't get better with the treatments; in fact, he got worse, and he was only around for about six weeks after Foster joined the family.  

Mom didn't want a cat.  She had two greyhounds, one of whom was elderly and in poor health, and Foster tormented both of them.  He constantly tried to escape whenever an exterior door to the house was opened, and Mom didn't want to have to worry about him getting lost or hurt outside.  With Dad not around to take pleasure in Foster anymore, we agreed we needed to find a new home for the cat.

But this wasn't just any cat - it was Dad's cat - and, other than Dad's car, it was the first time we had to make a decision of what to do something of his - something he had loved, even if just for a short time.  Something he should still be around to love.  Ouch.

So we didn't want to let just anybody have him; ideally, we wanted him to go to a home with children to play with and to a family that would report back to us periodically about how he was doing.  I felt like it would be like losing a part of Dad if we lost track of Foster, and all of us were already battling against such sadness that I didn't want one more loss to add to the mix.

A couple of my parents' friends offered to take Foster when they heard about our situation, but neither had children and we thought Foster would be happier if he had some kids to play with.  Both of my sisters and I considered taking him, but all three of us already had two cats each and we weren't sure the younger, more energetic Foster would fit in.  

Taking a cat nap in a gift basket
Six weeks after my dad went on ahead, my siblings and I and our spouses and children all gathered again at my parents' house; because my dad had expressed his desire to be cremated and the cremation couldn't be completed before some of the family needed to leave town the month before, we had planned the memorial celebration for a few days after his death and the burial several weeks later so we could all make it back for the service.

That weekend, we talked about what would be best for Foster, and, to our delight, my brother and his wife offered to take him back with them and their two children when they returned a few days later to Philadelphia.  It seemed like the perfect solution; they already had one cat but thought she and Foster would work out any differences in time as needed.  

We were apprehensive about how Foster would behave on the plane ride, but they reported that he did fine. (Don't tell the airline, but he even got to get out of the carrier and sit in my niece's lap for awhile on the flight!)  

Since then, he has adjusted to living with them, and he and their first cat Greta have called a truce.  I know my dad would be glad that his cat has such a great life, playing with my niece and my nephew and going inside and outside as often as he wants, and we are grateful that he ended up in such a good place and that we get to hear funny Foster stories so often.  

At home with my niece, who is showing
him a photo of my parents

Friday, November 23, 2012

Two Years Ago

Today I am remembering my family's Journey of Hope exactly two years ago, when we took my dad to The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in search of a treatment - or maybe even a cure - for brain cancer.


After Dad had gotten his first round of chemo and the "Magic Bullet" drug Avastin there, we spent the night in Durham, as we'd been told by the doctors that we had to do after the treatment in case Dad had any side effects after the first round that required medical attention.

We hadn't planned on staying that night originally; we had been told that we could get to Durham on the Monday before Thanksgiving, go to the first day of appointments at Duke on Tuesday, meet with the advisory team of neuro-oncologists on Wednesday morning, and then hit the road to travel the 500 miles back to my parents' house, in time to make it home that night so we could be there for Thanksgiving.  Our Back-up Plan was to drive part of the way back on Wednesday, spending the night at a hotel along the way and then getting up early on Thanksgiving Day to drive the rest of the way home.

But we also hadn't expected for the team to recommend that Dad start treatment there at Duke, right then.  And, since part of the deal for his doing that was that we stay in the area overnight, we agreed to stick around.  While I sat with Dad in the clinic as the medicine dripped into his veins, my mom and my sister Jennifer met with a hospital social worker to go over insurance coverage issues and other things; the staff at the Brain Tumor Center seemed much more well versed on several important matters like that than did the people with whom we had been dealing at the local oncologist's office.  My brother-in-law, Peter, who had taken a red-eye flight from California the night before to be with us in Durham, hastily searched the city for a hotel that had a suite-style room or two adjoining rooms - one of which we needed to be wheelchair accessible - available for that night.  Evidently, the night before Thanksgiving is a big night for hotels in that area, though, and the only hotel with enough available space for all of us to be in close proximity was not set up for handicapped access.  It was what it was, though, and so after a flurry of text messages back and forth between all of us, Peter booked the rooms and drove back to the hospital to pick up Dad and me, as Mom and Jennifer will still in a meeting there.


Once we got to the hotel, we got Dad situated in the wheelchair, and then I pushed him and Peter carried the luggage up to the room.  Dad wanted to sit in an armchair by the window in our room and watch TV ("It's way too early for bed," he said, as much to himself as to anyone.).  Peter went to the vending machine and got Dad a big bag of peanut M&M's and a Diet Coke, which he poured over ice into a styrofoam cup.  He put the goods on the table next to Dad, and then he and I took a look at the set up in the hotel room bathroom; I was very apprehensive about the fact that there were no grab bars (and essentially nothing else for Dad to hold onto) by the toilet, and, to make matters worse, the toilet seat was low, which would make it even harder (and more dangerous) for Dad to get up and down.  Peter and I decided that he would go to a drug store to try to find grab bars that could be installed temporarily; that seemed to be our only option at the time.



In the midst of our conference by the bathroom door, we heard a noise from the bedroom area where Dad was.  We hurried in and saw Dad nonchalantly sitting in the chair watching TV, with most of his drink and the majority of the M&M's spilled all over the floor.  "What happened?" I asked him.  "I didn't try to get up," he responded, which made me think that either he did and didn't want to admit that he couldn't do it, or he had no idea that I was referring to the fact that there was stuff spilled all over the floor next to his chair.  Peter grabbed towels from the bathroom, and, as he and I cleaned up the mess, I noticed that the table where the drink and candy had been was on Dad's left side, the side that was his dominant but in which he had impairment in sensation and strength because of the tumor.  It was evident that he had either accidentally knocked over the stuff on the table by just moving his arm, or he had reached for something on the table and knocked it over, or he had tried to get up out of the chair by pressing down on the only thing around him - the table- and then the table had tipped slightly, causing him to have to sit back down and the stuff on it to spill.   In any case, he seemed to have forgotten that anything had happened.  When he saw us cleaning up the spill, though, he started asking questions: "Did I do that?" and "Where is Vicki [my mom]?" and "When are we going home?" - and - the one that I thought was the most alarming - "Am I going to get chemo today?"  Shit, I thought.  I had been so hopeful over the last few hours as we heard from the Duke team about the benefits of their treatment protocol and then as I sat beside Dad in the Chemo Room watching him get the Magic Bullet treatment.  Now I was just scared, because with him not noticing or not remembering how he'd spilled and then with those questions, it seemed like he was getting worse.

But, as we had been doing during that time, Peter and I exchanged a look of concern, but we held it together and moved on to the next task at hand: while I sat with Dad in the hotel room, Peter drove to pick up my mom and Jennifer at the clinic.  He dropped off my mom back at the hotel and then he and Jennifer went on a quest for the safety rails, which, as seemed to be par for the course for us, turned out to be not nearly as easy as we'd thought it would be.  Traffic was nightmarish, and none of the drug stores in the area had what we needed in stock.  My sister tried to look up medical supply companies on her cell phone as Peter fought the traffic, but cell phone signal was sketchy.  Finally, they found a little hospital supply store that had the rails; they paid for their purchase and made their way back to the hotel.

Once back in the room, Peter and I looked at the directions for installing the grab bars and realized we needed a screwdriver.  He called the front desk and got connected to the hotel maintenance guy, who agreed to let us borrow one.  Peter handily removed the toilet seat, fastened the frame that was connected to the grab bar to the toilet, and replaced the seat.  Good to go.


The sun was just going down by that time, and Dad was already fighting sleep.  Like every night, he talked us into helping him into the bed and then talked about how he wasn't hungry but would try to eat something for supper and how he knew it would make for an odd sleep schedule to go to sleep that early but he was so tired he didn't think he could help it.

We let him sit up in bed watching TV as we came up with a game plan for what to do for supper. Peter volunteered to sit with him while Mom, Jennifer, and I went downstairs to the hotel restaurant, and we said we would bring food back to the room for the two of them.

I remember sitting in the restaurant thinking about just how surreal the whole situation was, from the fact that my dad had brain cancer, to the way his treatment had been started much more quickly than we'd anticipated, to how we'd been directed to stay in the area for an extra night, which meant we wouldn't make it back in time to join in on the Thanksgiving feast with the rest of my large extended family who had been expecting to celebrate with us after our trip.  As we ate, we talked about what a whirlwind the trip had been, how grateful we were that the Duke team seemed to be in our corner, and how hopeful we were that the treatment would help.

After we'd gotten back to the room and Peter and Dad had eaten, Dad announced that he was going to sleep, which was a cue for Peter, Jennifer, and me to retreat to the hotel room next door.  We positioned the door between the adjoining rooms so that it was almost closed, so we could hear if we were needed in my parents' room but so that we could whisper in our room and not disturb my parents.

As usual, Dad had to get up a few times during the night to go to the bathroom, and we were glad for the grab bars each time.  Because he had been started on the chemo pill just after he had the IV treatment that day, we had been instructed to be sure that the lid of the toilet was closed each time before he flushed and to make sure he thoroughly washed his hands after using the bathroom to protect him against toxic chemicals (Doesn't it seem weird that they were having him ingest the chemicals but he had to take extra precaution to avoid being exposed to them externally?).  We tried prompting him through the bathroom door to remind him, but, because he didn't always listen to us before he did something like flush or try to stand up by himself, eventually my mom just started going in there with him to be sure that he was following the safety procedures.

The next morning, on Thanksgiving Day, everyone but Dad woke up early and packed up our gear; we were eager to get started on the drive home.  We had a hard time getting Dad up and getting him ready; he wanted to have his face shaved, and it took major negotiating to skip it so we could just load up and go.  It was quite the antithesis to his usual tendency when it came to starting out on a road trip; every other time, he was the one getting up early and urging the rest of us to hurry.

Many restaurants and even some gas stations were closed along the way on the long drive home, and, by the time we finally made it back to my parents' house that night, we were hungry and exhausted.  We ate leftover Thanksgiving food that had been packaged up and put in the refrigerator for us after the big family meal that we'd missed.  Dad ate a little turkey and dressing and then went to bed; as usual, though, even with as tired as he said he was at the beginning of the night, he had a hard time sleeping and battled a headache all night, finally falling into a medicated sleep just before the sun came up.

The ringing of my parents' telephone woke us up early the next morning; it was a nurse from the nursing home where my grandmother was calling to tell us that Grandmom had taken a turn for the worse.  My siblings and I hurriedly got dressed and drove to the nursing home to be with Grandmom, and the challenges continued all day long.  A cold front had come through overnight, and it was very cold and windy outside, which added to our problems, especially during the family photo shoot.  

When I think back to that day, one of the most difficult days of my life, I remember the brutal cold, the confusion, the fatigue, and the extreme concern about Grandmom, but what I remember most is how hard Dad worked to take part in what was going on around him - and the feeling of love between all of us.  I remember noticing how difficult it was for Dad to tolerate the cold weather as he was helped out of the car, as he sat in the wheelchair for pictures to be taken, and as he was helped back into the car so he could get back home.  Like a lot of things going on then, the photo shoot seemed almost dreamlike: for as much as I was in denial about the prognosis of the brain cancer, I guess some of the reality had sunken in because not long after the news of his diagnosis had been given to us I scheduled a family photo shoot for the day after Thanksgiving, knowing (desperately hoping?) that the whole family would be together then so that we could have our picture taken, all together.  

We made it through the photo shoot and through the next couple of days, trying to keep all of our spirits up as we watched over Dad and Grandmom.  

I don't remember a lot from the time my dad was sick, including the details of what else we did over that weekend, but I do remember that I felt a sense of unease (even more than usual) when I left my parents' house that Sunday.  I really wanted to be present when the "magic" we had been promised happened; I envisioned Dad suddenly standing up from the bed or his recliner, steady on his feet and with clarity in his eyes and a smile on his face.  But more than I wanted to be there to witness first-hand the miracle, I just wanted one to happen.  I wanted to see the fulfillment of the cause-and-effect; I wanted the promise of the hope that we had to be realized.  It had been a whirlwind past few weeks, especially the one leading up to Thanksgiving, and I was exhausted both mentally and physically, but I was so very thankful for the love and the time together that we had.