The Right to Die

This is a follow-up to the previous post, Without a Sound:

There’s a lot that bothers me about the handling of the news about Brittany Maynard, the 29 year-old woman who chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).  Probably the thing that disturbs me the most is the confident way that so many people have commented on her story and her decisions, as if they have any idea what has really been going on behind closed doors in her life.

As someone who was there on the scene for most of the 75 days between my dad’s diagnosis of GBM and his death, I feel like I have a fairly good idea what was going on, but I also know as a result of my experience that there are some things – even in highly publicized cases like hers – that anyone on the fringe or further out cannot know, and that’s the way it should be.  Health issues are private and personal.  The fact of the matter is that even with as healthy as Brittany looked when her image appeared in the news just days before her death we don’t know what the cancer inside her brain was doing to her, and we don’t know the intricacies of her diagnosis or prognosis.

Another thing that disturbs me is the way the media has portrayed Brittany as a hero, as if she was a crusader of sorts because of a personal choice she made to make another personal choice public.  To me, it seem like this implies that a person who does not make the same choices that she made is not as important or as courageous.  I'm glad that Brittany and her family had the opportunity to make the choices that they made, but I also think that people in other situations need an equal amount of respect and compassion. And my bet is that she neither viewed herself as a hero nor wanted to be viewed as one; like the rest of us, she was probably just doing the best she could to get through life and the hand that she was dealt in life.

The tricky thing about commenting on such an emotionally charged topic is that logic often takes a back seat in such a situation, as does respect for the views of others. I have had a hard time figuring out exactly what I want to say about Brittany’s story because I see the irony in producing commentary about the error I think others are making by commenting about the case.  The potential for expressing bias as fact, judgment, condemnation, shaming, and labeling is huge; this is what we tend to resort to when threatened or frightened -- and there's not much, if anything, in life that's scarier than facing pain and the end of life. When I think about the many comments that have been made about how Brittany chose to handle her medical condition, most of which have seemed judgmental and harsh to me, I can't quite get past the hypocrisy of saying "Shame on you for shaming someone else" or the irony of judging someone for being judgmental.

Here’s a confession: when I read about Brittany’s success in doing some of the things on her Bucket List, I felt jealous and even a little angry.  My dad had a Bucket List too, but he wasn’t able to get to any of the items on his agenda because of what GBM took from him from the moment the condition revealed itself.  I also felt jealous that Brittany’s medical team seemed to have communicated with her clearly about her options … or maybe she was just more able to figure out what her options were because the cancer in her brain hadn’t impaired that cognitive skill in her … yet.

My dad’s doctors, especially his oncologist, didn’t seem to have an accurate view of what was happening when he went into a downward spiral.  It seems like an oncologist would be much better attuned to medical facts so as not to succumb to the attraction of denial, but that was not the situation in my dad’s case.

I honestly don’t know what my dad would have done had we had all of the facts, had he been able to adequately process things, and had he had an opportunity to make a choice that would not put his family in jeopardy in any way.  I know that it would have been nice to have someone – anyone – ask him, or us, about his priorities.  The medical team was evidently too rushed, too uneducated, or too something to think to ask him, and we didn’t know to ask (or what to ask or how to ask it) or to speak up on his behalf until the very end.

As I've said and written about, the diagnosis of brain cancer, especially GBM, is particularly devastating for many reasons.  As a result of the attention brought to GBM by Brittany’s case, NBC news wrote an article about the unique challenges with brain cancer:

Why Brain Cancer is So Lethal

The neuro-oncologist who called me to announce that my dad’s case had been accepted by Duke University is quoted in the article:  “Brain tumors,” he says, “particularly but not exclusively the malignant ones … are in such an eloquent area of the body that surgical intervention may not be possible and other interventions such as radiation therapy may come with a fierce price.”  Yet another thing I wish I wasn’t in a position to have to know truth of.

Recurrence of GBM, the article says, is inevitable, at least as the treatment options now stand.  As I wrote about in the last post, this is especially true in certain variations of GBM. 

Another thing that bothers me about the coverage of Brittany’s story is the overuse of the phrase “death with dignity.”  Maybe it’s just a weird point of sensitivity of mine, but I don’t like the fact that that phrase seems to imply that there is no dignity in making a different choice – or in not having a choice – about the specifics of an impending death.  That feels like a really sick kind of competitiveness: who did death better???  Even the phrase “the right to die” seems muddled to me: I’m pretty sure that dying is a natural process rooted in science, not a “right.”  I think better terminology is “to hasten the end of one’s life” or something similar that better captures the fact that one's time on this earth is not going to be long with a diagnosis like this, no matter how things are handled.

We can’t know what the specifics of Brittany’s medical condition were, and we can’t know what she thought or felt when the news of the prognosis and the path she would likely have to travel were delivered.  In an instant, though, her choices - and life as she knew it - were stripped away.  I think, like a lot of people with terminal diagnoses who consider “physician-assisted suicide,” that she was desperately trying to gain some control in a situation that was horribly out of control, and I get that.  If you’ve ever seen someone have a seizure, if you’ve ever seen the terror and confusion in the eyes of someone who is aware that their own mental state is impaired, or if you’ve ever seen the look of humiliation and angst on the face of an adult who has wet his pants because he couldn’t make it to the bathroom in time, then you might have a little bit of an idea of what she and her family were feeling.  If you love a person who is having to endure things like this, plus a significant amount of often unrelenting physical and emotional pain - and who is being told that death is imminent, then there’s a chance that maybe you can relate to what it’s like to feel such a desperate need to try to establish order and control. 

I wish I could say that I can’t imagine what it took for Brittany’s family to support her decision; I’ve tried thinking about what it must have been like on their last night with her or in the last hour they had together before what they knew was going to happen happened; it’s a different kind of horror, I would imagine, than what my dad and my family experienced – but, I would guess, the same kind of love.

 This is a song that my dad loved, played by a musician named

Bernard Stanley"Acker" Bilk who died earlier this week. 

Water Marks

I've heard it said that within two generations after a person is gone from the earth that it will be as if he was never there. This is a statement with which I completely disagree, though; I think people who think like that have not considered the rippling of a person's presence, the mark that is left behind forever by association on generations to come. If something about a person affects me in any way at all, there is a shift in my actions, in my perspective, in my words, or in some other area, and those around me are likely then to be impacted to some extent, which then affects others in their path in the future.  That's how the rippling effect works; that's how our presence is maintained long after each of us is gone. This is something that has become very clear to me since my dad's death, and it is a truth in which I find comfort.

Once when I was in college, I heard someone make an off-hand comment about how it drove her crazy when my dad put a glass of water down on her coffee table without using a coaster. "It's like he doesn't even think about the water marks he's going to leave," she complained. I didn't really see her point at the time and I still don't; like my dad, I guess, it's never been something that I've thought was worth adding to my Worry List. 

In fact, I noticed a water mark on a piece of furniture in my house just the other day and thought, "Damn, what I wouldn't give if I knew that mark had been left there by my dad."

I don't think my dad went through life thinking about the water marks that he was going to leave behind; he wasn't that self-centered or that existential in his philosophy.  I wish he could know now, though, about at least some of the ripples he created; certainly his presence and the waves of his existence continue far beyond what he was able to see.

The Power of A Single Second

This short video clip is a good demonstration of the power that even just a single second in time can have:

          If the video above won't play, click HERE to open the link in a separate window.

Since my dad's diagnosis and his subsequent death, I think a lot about the concept of time: I am more fully aware than ever before (and more aware than I actually want to be, I think) that there is no way to restore the sand back into the top part of the hourglass.  And that it's passing by, quickly, and that once a moment in time - or an opportunity - passes us by, it's in the past, and so it's so important to seize the moment, to take the plunge, to prioritize ... and to take time to stop and smell the roses, to be present with the people we care about, and to be kind and appreciative and gracious along the way.

All Done

In the months after my dad's death, I went to weekly meetings of a grief support group that was comprised of people who had lost a loved one at some point within the past year.  There were about a dozen group members, ranging in age from a college student to a woman in her 70's.  At the second meeting, we were asked to go around the circle with each of us telling what we had been thinking about that week. One woman, who had lost her adult daughter to cancer, said she had sat for hours staring at a pile of blank thank-you note cards that she knew she needed to write to thank people who had helped her during her daughter's illness and during the week of the funeral.  She said that she just hadn't been able to start the process of writing the notes.  She thought for a minute, obviously deep in thought, and then quietly said to the group, "I guess I feel like if I get those notes written, I'll be all done with the whole process of taking care of details for my daughter.  Of my grief process.  Maybe even of my daughter, and that's not something I think I can survive."  Tears fell silently down my face as I listened to her talk and wished with all my heart that I didn't understand just what she meant.

I feel that way about talking about my dad's illness, about his life, and about my grief.  If I stop talking (writing) about it, I feel like I'll be all done, and, like the woman in the support group, that's not something I think I can survive.

Damn, I miss him, every day.

Grief and Ice Chewing

I recently met a woman - someone I'll call Tina* - though a mutual friend.  In the course of conversation, it came to light that Tina's mother had been my boss for many years before her retirement.  I was particularly happy to meet Tina because her mom, about whom I will always think very highly, passed away tragically very soon after she retired, and I had never before had the opportunity to tell anyone in her family how much I appreciated the impact she had had on my life.

I told her how her mom had guided me professionally over the years, and then I told her what I admired about her mom the most, which was her mom's effort and ability to keep track of the details of things going on in the personal lives of her many employees and coworkers.  In a word, it was her kindness that touched me the most over the many years that I knew her - and it was that quality that I remembered and admired about her the most.

Tina told me about the day five years ago when her mom died, the specifics of which I hadn't heard before.  She talked about how hard it was to lose her mom and how she, as an only child, and her dad had grieved the loss differently.  She asked about my parents, and after I told her about my dad's death, we talked more about grief and loss.  As someone who is twice as far ahead as I am on the road of grief, she told me a few things she had come to know, like how the sadness and the pain never go away - but that things do get more tolerable in some ways over time.  

It was comforting to hear what she had to say about the grief process from her perspective and based on her time frame; it reminded me of once many years ago when I went to have my teeth cleaned at the dentist's office and saw a dentist in the practice whom I hadn't met before.  They had gotten a gadget to use during exams that was essentially a tiny camera that allowed them to film what was going on in a patient's mouth and then project the image onto a TV screen for the patient to view.  (Stick with me; I'm getting to the part where this ties in to the conversation detailed above.) The dentist used the camera to show me that I have some tiny cracks in some of my teeth; likely, she told me, the result of crunching ice.  Although she presented that information to me more in the form of a scolding than anything else, for some reason I felt the need to explain to her why I had started the obviously bad habit of ice crunching: to combat the severe heartburn I experienced during my second pregnancy.  "How old is that child now?" she asked me.  I thought she was just making conversation, and I told her my daughter was five.  "Well, that excuse got used up a long time ago," she snarkily informed me.

Needless to say, I did not bond with that particular dentist, and I chose not to be seen by her again.  I felt there were several important pieces of information involved in patient care that she was missing, ranging from general courtesy and compassion to motivation and perspective.  She didn't ask me if I still had issues with heartburn or if I thought the ice-chewing had just become a habit over the years; actually she didn't ask me anything except for the age of my child, which she obviously asked only as a lead-in to the judgment she was all too eager to issue out.  

And that leads me to what I think is my point, and, you'll be glad to know, to how this story ties in to the first one: grief, like ice chewing and lots of other things in life, has its own time frame in every situation, and that's ok.  Each person has his or her own story; each of us has traveled a different road to get to where we are today.  Without having traveled that same exact road, or, at the very least, without having worked to try to understand that person's perspective, another person cannot possibly have the insight or the knowledge - and possibly the right - to stand in judgment of another person.

That's one thing that I've certainly learned over the past couple of years; that, and the lasting impact of kindness.

*Her real name isn't Tina - and her identity probably really isn't a secret if you know me and my work history, but I prefer to use that instead of her actual name to protect her privacy - and since knowing her identity isn't the point of this story.

Not Knowing - Grandmom's Story, Part 5

Continued from Grandmom's Story, Part 4

Mourning the loss of my grandmother in between the time that she died and the time of her funeral brought with it many emotions; even in the midst of the series of aftershocks that my family felt as a result of the compounded, extended grief after first my dad's death and then his mother's, I found it hard to believe that she was really gone.  She had been slipping away - and it could even be argued that she had already slipped away in essentially all forms except for the physical - for several years, and we knew her time was near, but not coming together as a family to grieve during those few weeks made it difficult for me to accept.  

I knew that I wanted to be prepared to say something about her life to those who would gather to honor her memory; I spent many nights sitting up, intending to write down what I wanted to say but not being able to, either because the words just wouldn't come or because the tears that flowed kept me from being able to see clearly enough to record my thoughts on paper.  I re-read some of the many letters that Grandmom had written to me over the years, and I looked at lots and lots of photos of her from during her life, many of which had also been taken with my dad by her side.  I created a slideshow of many of the pictures and selected background music to go along with it.  None of it helped me to process things or to come up with what I felt were the right words to say as a tribute, though; I ended up leaving to make the trip to the town where my grandmother had lived for 5 decades and some change - and where my dad had grown up - without a firm idea of the words that I wanted to say during the memorial service.

My husband, my daughters, and I met my mom, my sister Nancy, and her husband David at the hotel where we were staying for the weekend; many of the members of my dad's side of our extended family were staying at that same hotel, and, after not having seen the majority of them since I was a teenager, it was a little surreal to keep running into them a little at a time in different settings, in the hotel elevator, the lobby, the parking lot, and the Waffle House next door to the hotel.  I had to tell myself countless times to hold it together, because, as each layer of the family reunited, the subject of my dad's very unexpected illness and death was naturally piggybacked onto that of my grandmother's passing, a recurrent one-two punch that I didn't think I had near the stamina to withstand.  

I didn't sleep much the night before the funeral; I felt unsettled and almost inconsolable.  I texted back and forth with my sister Jennifer who had not been able to make the trip from California that weekend, and together we came up with a message that I planned to communicate at the service the next day.

It's difficult to organize a funeral from out of town, especially in a town with limited resources and where one has limited connections - and especially in a state of compounded grief.  Not knowing what the best thing to do would be, we planned to have the service at the funeral home and then, at the invitation of the members of my grandmother's church, to have fellowship and food afterwards at the church.  Based on a decision my parents had made before my dad had gotten sick, my grandmother's body had been cremated, and my mom had the task of transporting her remains to the funeral home, allowing my grandmother an opportunity to go home in yet another sense.

                       Click to view the slideshow from my grandmother's funeral

When we arrived at the funeral home, we took a few minutes to set up the video projector and my computer so that the slideshow of photos of Grandmom could be shown on the wall of the chapel before the service, and then we met briefly with the funeral director, at which point it came to light that a burial service was not planned as part of the arrangements for that day.  When that realization hit me, I felt the floor drop out from underneath me; it seemed so utterly disrespectful and as if Grandmom's death - and her life - were being disregarded.  I hadn't known that a ceremony for the burial hadn't been planned, and I felt strongly that as a family we needed to lay her to rest, essentially to take the opportunity to do the last thing that we would ever be able to do for her - and maybe for my dad as well.  In the midst of the back-and-forth banter about if and how the arrangements could be changed, my brother-in-law David saw the look on my face and took the funeral director aside.  I'm not sure what he said to the guy, but a few minutes later David came back over and said, "After the memorial service, immediate family can meet the funeral director at the gravesite for the burial of the ashes; is that ok?"  I felt hot tears of gratitude and grief spring to my eyes, and a minute later we were called to come into the chapel for the service to begin.  

The music was playing and the photos of Grandmom were being projected as planned; again things seemed surreal, and I felt as if I were floating to my seat on the front pew.  My father's brothers were in the aisle behind us; his sister had not been able to attend from out-of-state due to her own poor health.  As the music ended, the minister from my grandmother's church stepped up to the microphone and began the service; my grandmother and this woman had not known each other, but the minister knew of my grandmother and certainly of the decades of service that she had given to the church.  She gave an eloquent sermon, a fitting tribute to a woman who had so loved her church and her community and the people of both.  After she had finished, she invited me to come up and speak on behalf of the family.  I pulled out my scribbled notes, and here is what I said:

I know that my grandmother truly appreciated the love of all of you and that she would want to thank everyone who helped her during her life, just as she helped so many of us with her smile, her openness, and her perspective.  So thank you to everyone who visited her and kept her company over the years and to those who ran errands for her once her vision began to fail, especially those who drove her to her doctor's appointments and to Fairfax Methodist Church, which she loved so much.  She would also definitely want to thank my mom and my dad, who did such an amazing job caring for her, particularly over the past few years.  When my dad was sick, he worried so much about his mother.  My mom promised him that she would be there for Grandmom, just as she and Dad had always been, and she was.  When Grandmom passed, Mom was with her, holding her hand, and, for that and for everything else, Mom, Grandmom would want to thank you, and I do too.  

I finished up by thanking people for coming to honor my grandmother's life, although the exact words that I said to convey that part of the message probably got lost somewhere in the midst of my tears, which had started as soon as I said, "When my dad was sick, ..."   I am not a crier.  I felt somehow that my uncontrollable tear-shedding was something of which Dad and Grandmom would not approve - and possibly even something they wouldn't understand; I could almost hear them telling me from behind the scenes to get it together, but I just couldn't do it.  I looked over at my family and at my dad's brothers as I walked back toward my seat on the pew, and I saw that they were all crying too.  The sadness was palpable in the air; after the family members had walked from the chapel into the lobby, we could still hear one man in particular sobbing.  We later found out that it was one of Grandmom's long-time neighbors; while I felt great sorrow at the man's apparent grief, it was a touching reminder of my grandmother's impact and that she had touched so many people, many of whom we didn't even know.  

After the service, family members congregated in the foyer and thanked people for coming as they filed out in the parking lot.  In a quiet moment, I told my dad's cousins Carl and his sister about the dream I had had about their grandfather; the three of us agreed that we were comforted by the thought that our loved ones who had gone on ahead were together now.

After that, we drove to the cemetery and parked near the place where my grandfather had been buried many years before.  The funeral home director and his assistant met us there with a flowers from the service and a shovel; we stood quietly with the sun beaming down on us as we watched the burial of Grandmom's ashes.  It was a simple ceremony, but yet it felt tender and unabridged. 

I will never forget the meal afterwards at the church where my grandmother had been a member for over 50 years, where she had volunteered as the church librarian, and where a couple of years ago the church library was dedicated to her.  The food, which had been prepared by church members, many of whom had been friends of Grandmom’s for decades and some of whom had known Dad since he was young, nourished more than just our bodies.  We didn’t  know most of them, and most of them didn’t know us; but we knew each other’s hearts because we all knew Grandmom, and she was nothing if not heart and spirit. 

Before we said our goodbyes and left the church, we went upstairs to the library that bore my grandmother's name.  We admired the plaque with the engraved dedication to her for her years of service to the church, and we thumbed through some of the neatly organized books on the shelves in the room.  My sister and I came across several sticky-notes tucked inside books; on the notes were two things that made us smile: the name of Dad's business, letting us know that he had donated some office supplies to the library, and a sampling of Grandmom's unique style of penmanship; she had written notes about each book, possibly to herself or maybe to future readers.  

After we'd gotten back to the hotel, some of our group decided to go antiquing in a few nearby stores; my sister Nancy and I walked to a convenience store and bought some beer, and then we sat in the sun and drank it, still wearing our funeral dresses, on the tailgate of my husband's truck in the parking lot in back of the hotel.  Whether it was the sun or the beer or the company - or a combination of all three, sitting out there felt somewhat curative; we knew it was exactly what Dad would have done had he been there, and somehow knowing that helped a little bit, too.

My grandparents' house, where my dad grew up

The next day, we packed up the car and drove around the little town one last time.  We ended our tour by driving past the old textile mill where both of my grandparents had worked for almost all of their adult lives.  The building was in the midst of being torn down, overseas outsourcing having taken the work that had provided a living for many of the townspeople for so many years.  I watched in the side mirror as the mill got smaller and smaller as we drove away, and I felt unexpectedly sad to know that this would probably be the last time I would ever come to this place, a town that held so much of my grandmother and my dad - and even a little bit of me. 

"The Mill"

Not Knowing: Grandmom's Story, Part 4

Continued from Part 3 - Grandmom's Story 

One of the things that my dad worried about the most when he was sick and even before then was his mom, who, since the death of my grandfather many years before, had been living alone in a small town in southern Alabama until she suffered a stroke at the age of 87.

My daughters and my dad, with Grandmom, Sept. 2010

For all of my life, I'd thought of my grandmother as one of the most fiercely independent individuals I knew, a person whose goal it was to leave the earth a better place than she'd found it, without asking for much help or (as she put it) "without burdening" others and without using anything as an excuse for not doing her part to help others in need.  Grandmom has perhaps one of the most interesting life stories I've ever heard, with lots of adventures and even more challenges faced along the way.  She pinched pennies, cut corners, and made due for all of her life, but, a deeply religious person, she never failed to tithe or to give of her time when her church or someone in her community needed assistance.  She was well-read, and maybe that was one thing that contributed to her acceptance of people from all walks of life, of all backgrounds and all races, which was not a practice often seen in that time.  From the way I saw things, Grandmom didn't concern herself too much with what a person's income or job title was or with how fancy of a car or house a person had; as long as someone seemed to have a good heart, seemed to be trying to "do right," and seemed to be genuine and kindhearted, Grandmom liked that person, and, like my dad, she extended courtesy and respect to most everyone she met.

Although the level of anxiety and extreme depression that Grandmom had been experiencing seemed to leveled off for the most part over the course of the weeks after she had been told about my dad's illness and subsequent death, her overall health did not improve.  On the afternoon of April 18, 2011, my mom got a call from the nursing home and was told that Grandmom's condition had worsened.  Mom called my sisters and me to update us as she hurried to get to Grandmom's side, where she stayed for the remainder of the day.  With Grandmom's breathing labored and her skin color changed, Mom talked to the nurses and decided to spend the night with Grandmom so she would not be left alone even for a minute.  The staff at the nursing home was kind enough to move Grandmom's roommate to another room so Mom could sit at Grandmom's bedside in privacy.  Throughout the night, Mom read to Grandmom, talked to her, and tried to reassure her that it was ok for her to go on ahead, reminding her that she was so loved and that my dad and my grandfather were waiting for her in heaven.  Grandmom seemed to be at peace, and, as the first light of day could be seen through the big window in the room and with my mom holding her hand, Grandmom took her last breath.

My sister Nancy joined my mom soon afterwards at the nursing home, and together they dealt with the things that needed to done, including calling the funeral home, packing up Grandmom's belongings, and saying their goodbyes.  There were some haunting similarities to what had had to be done after my dad's death just three months earlier, but at the same time this was a different situation for many reasons.  Given all that had happened to impact her quality of life and given her age and overall health, we all knew that Grandmom was prepared to go on ahead and that she very likely welcomed her own passing from this life.  From my perspective, it seemed that she had been leaning into the light for quite some time, dearly missing her husband of 50 years and many others who had gone before her - and feeling that her purpose on this earth had been served.  Personally, I will say that the news of her death hit me hard but that my mourning was much more for my own sake than for hers, and the grief from her passing and from that from my dad's was so enmeshed it was like pouring gas on a fire.  

I found a group email that my dad had sent out just before he'd gotten sick to update people about Grandmom, and I used that set of contact information to communicate the news to many extended family members and friends about Grandmom's passing and to let them know that we had decided to hold a memorial service for Grandmom in her hometown over Memorial Day weekend to give those traveling from out of town time to make the necessary arrangements.  Mom had the obituary run in the newspaper in Grandmom's town and contacted Grandmom's church to let them know as well.  

A couple of weeks later, a violent storm came through the area where I live overnight.  The noise of the thunder actually woke me up in the night, interrupting a dream that I had been having about my grandfather's brother Hilyard, whom I had only seen a few times in my life.  The last couple of times I remember seeing him, he was using a walker to get around; it had been many years since his passing and many more since I had seen him.  In the dream, though, he walked up to me unaided, looking younger than I remembered ever having seen him but so closely resembling my grandfather that it was easy for me to recognize who he was.  He looked at me and said very simply, "Your grandmother and your dad want me to tell you that they are ok," and then, before I could respond, he turned on his heel and strolled away.

When I checked my email early that next morning, I saw that I had a message from my dad's second cousin Carl, Hilyard's grandson, who had heard on the news that the storm had left damage to many homes in my city.  I was touched that Carl was checking in on us; I had not corresponded with him in the past except for the recent message about Grandmom - but I was stunned at the timing of the communication, just about an hour after I had had the dream about his grandfather.  I emailed Carl back and told him that we hadn't sustained any damage in the storm, but, not knowing what he would think if I told him about the dream, I didn't mention it then - but I did a few weeks later at the memorial service for Grandmom.

To be continued ... 

Happy National Siblings Day

Happy National Siblings Day, especially to my sisters, without whom I would not be the person I am today.  

Cheers!

I don't think there's anyone else in the world who can ever know a person like his or her siblings do; there is a shared history from events woven through the fabric of our lives, full of memories, tears, adventures, laughter, trust, support, and love, a tapestry of snapshots from the past and the present that results into a truly unique bond.

During the time that our dad was sick and since his death, I have felt like my sisters were the only ones on the planet who felt even close to the same way I do. We had different types of relationships with him and we are different people, but we love each other as fiercely as we loved him. 

We've taken turns falling apart and worrying about the others, but we have always operated as a unit.  I know that when nobody else can understand what I am feeling or why I am doing whatever it is  I am doing - crying, ranting, hurting - they will.  

I also know without a doubt that without both of them, I would not have made it through any of what happened as we have struggled to make it through the most difficult time in our lives, at least not in the same way that I did. 

They regularly support me, entertain me, give me things to look forward to, and keep me grounded, and I am thankful every single day to have them in my life.

No Answers - Part 4: In The End

Continued from No Answers - Part 3: Doctors and Death

Another thing that I find disturbing from during the time that my dad was sick is that we never found out what really caused his rapid decline or his death, as I touched on in this post as well.  The medical record from his second and final hospital stay - and his death certificate - list his primary diagnosis as brain cancer ("GBM"), which is of course accurate, but here's the confusing part: his death certificate lists a secondary cause of death as "pancytopenia," or low blood count, while the records kept by the hospice nurses during the final days of his life list only GBM.  Although a low blood count is an expected side effect of some types of chemotherapy, it is not one that is typically seen from the type Dad was getting.

However, for an undermined reason, Dad's blood count was low when he was admitted to the hospital the second time, but that was aggressively treated with transfusions, platelets, and medications and had resolved over the time he was in the hospital.  Still, though, his condition continued to decline, and the host of physicians on the case said over and over that they didn't understand why he wasn't getting better.  Several times towards the end of that last hospital stay, the oncologist said, "On paper, he should be getting better."  Not better from the cancer - although the scan did show that there was less of a blood supply going to (or "feeding") the tumor which was the goal of the treatment with Avastin - but better from the horrible infection which we can only assume he got from a compromised immune system.  The oncologist expressed lots of confusion about why Dad's immunity was so low, too.  I didn't think about it then, but I have many times since: what does lower immunity is steroids, and Dad was on a HUGE dose of them, for an extended period of time.  That was never mentioned by the team of doctors as a possible reason for the infection or the problems he was having; in fact, a severely compromised immune system wasn't ever mentioned to us as a possible side effect of that medication.  We were given reams of paperwork about the possible risks and side effects of the Avastin and the chemo, but nothing on the side effects or the risks of the steroids (or the seizure medication he was on).  Dad hated the steroids, and we did too, because of the side effects they caused that we knew about, like insomnia and blood-sugar level spikes; the oncologist insisted that Dad needed to stay on a very high dose of steroids throughout the course of his illness though because he continued to suffer from severe headaches.  Someone later asked me why the doctors never considered whether or not placing a shunt could have helped with the headaches.  I don't know, and, unfortunately, that's just one of many things that was never discussed with us and that we will never know.

I guess second-guessing like that probably happens a lot when a patient doesn't make it, at least on the part of the family.  I wonder if it happens on the part of the oncologist too, though, or if he just crosses that patient's name off on his list and moves on.  I hope there is a review of some kind, perhaps so that something could be learned that could help the next patient.

I would venture to guess that it's not uncommon that not knowing the actual cause of death is unsettling to those left behind.  

I don't understand why no one was able to explain to my family what was going on medically with my dad; I'm not sure if they didn't care to figure it out because they didn't think it mattered since they felt he was obviously terminal anyway, if they couldn't figure it out due to their inadequacies or problems with the medical testing [one doctor told us that scans like CT's and MRI's "just can't really be trusted," whatever the HELL that means], or if they couldn't figure it out because it was truly a medical mystery.  I realize that all of the problems stemmed from the unpredictable nature of neurological disease, but all of the unknown just exacerbates my emotions - anger, sadness, frustration, all of it - even more because it feels like someone, somewhere, failed - failed to figure things out, failed to fix things, failed my dad and my family.

I've always been a right-brain thinker. I like logic and consistency. I don't mind following rules that make sense.  I like sticky notes (like my dad) and flow charts (unlike my dad - he didn't feel the obsession need to visualize the steps or the details like that).  On the flip side and to the point of this post, I have trouble tolerating things that don't make sense, that don't seem fair or logical, and that haven't been explained.

I know that knowing wouldn't change anything and that it probably wouldn't make me feel one iota better if I knew the answers to the questions with which we've been left, but still somehow not knowing disturbs me.  I guess having it remain a mystery just further adds to the shock of the whole thing having happened in such a relatively sudden manner - the diagnosis in an otherwise very healthy person, the lack of improvement despite following the prescribed course of treatment including surgery, rehab, and participation in a clinical trial, and then the rapid decline from which he could not recover.  I think I will always be stuck questioning why the things that weren't supposed to happen happened and why the things that were supposed to happen didn't.  

Preparedness

I have a confession to make, one that may surprise people who really know me, especially those who are aware of my love of having things organized and my love for preparedness and for planning.

I am not fully prepared for death or catastrophic accident.  

I don't mean emotionally, or spiritually, ... those are entirely different conversations ... what I am referring to now, though, is legally.

Here's what I think legal preparedness looks like:

*Researching and discussing various life and death and related financial issues so that legal paperwork including a will and a living will have been prepared to detail health care decisions, transfer financial assets, and to put thoughts and arrangements into writing. 

*Having had this paperwork reviewed and finalized by an attorney who also provides advice on issues such as creating a trust and custody of minor children.

*Having organized all of the above as well as information on assets (bank account numbers, documentation of property ownership, etc.), insurance policies, and contact information for key people and having informed several key people that such an in-case-of-emergency file exists and where it can be located. 

One of the many things I learned first-hand from going through the experiences that came as a result of my dad's illness and death is the need for legal preparedness.  While my dad wasn't young, per se, he wasn't nearly old enough to think that there was an urgent need for him to be fully prepared from a legal standpoint for his death or for an illness so devastating that he would be left unable to finish preparing.  He, like all of us, thought that there was still time left to do things like that.

There are other things in life that are different versions of preparedness, things you hear that you should do "just in case" but that you put off for one reason or another.  Sometimes that turns out ok, like if you don't buy the extended warranty on a new refrigerator and either it doesn't break or it does and the repair costs aren't too bad, but here's the truth about end-of-life legal decisions and planning: at some point, it will matter if you haven't gotten your affairs in order.  Unlike other things that can technically be put off forever, this is one thing that will cause great problems if it's left undone.

There are odd terms for doing this kind of thing, really: getting your affairs in order,  making final arrangements, pre-planning (isn't all planning "pre-planning"?).  But it is perhaps one of the most important tasks you can accomplish as an adult, if not for your sake (in case you go on ahead right away instead of hanging in the balance for awhile like my dad did), then for that of those you will leave behind.

People talk about their Bucket List items, things they want accomplish before they die.  But what about what they NEED to get done?  I didn't realize the complexity of what needs to be prepared before I was one of the people needing access to that information for my dad, and I hadn't really considered the implications that could ensue if that type of information wasn't organized and at-the-ready.  It's difficult enough, I'm sure, to pull those documents out and to go through them to see what needs to be done when a death has occurred suddenly and/or unexpectedly.  What we didn't know before, what we couldn't have know until we had experienced it ourselves, was just how tough it was to put all of that together while we were caring for my dad and trying to cope with our own grief during the ten weeks he was so sick.  Not only did we need access to the information that would normally be needed in case of a death, but we also needed to know about other things on Dad's behalf during his illness like long-term disability coverage, health care insurance benefits (Medicare and private insurance), and long-term care insurance.  It took a lot of time and effort from all of us to gather that information and to decipher what needed to be done to make any of it available for Dad's care.  It's something that I'm sure my dad wouldn't have left undone had he been aware of the implications of not being complete in organizing the necessary information.

Now that I've experienced the difficulty of it first-hand during his illness, I KNOW better.  Still, for a variety of reasons (excuses?), I am not prepared, but I have set a goal to get my things in order; I've started the process, and hopefully I can finish it in the next month or two.

It's a depressing and tedious and stressful thing to do; that's for sure.  Nobody likes thinking about the type of what-if's that are involved in this process, but I can only imagine what a gift it would be to have it all together, should a crisis occur.

Here are some resources, in case you aren't complete in your preparedness either:

A website with info about attorney Alexis Martin Neely's book "Wear Clean Underwear" - a great resource about legal planning, especially for parents (Here's a shout-out to my sister JB for finding this one!)

"Getting Your Affairs In Order," - a free Penn State reference guide

Online info from WebMD - "Putting Your Affairs In Order Before Death