The Shift

It always feels strange to have something significant going on in my life that people around me aren’t aware of.  I’m sure that’s true for most people; one common example of this is when it’s a person’s birthday and most of the people with whom he or she crosses paths that day don’t know that it is. Whether it’s something good or bad, oftentimes it seems like the information just isn’t comfortable or appropriate or relevant enough to share.  In many cases, I think it would feel awkward, somehow attention-seeking  or maybe even like bragging, to tell the people around me, and in some cases I don’t really even want them to know for various reasons – but it still feels odd, as if I am driving on a side street or an access road alongside the main highway.

That’s how it feels to me going into the week that marks three years from the time my life – and essentially my perspective and my bearings – shifted, the week that holds the series of days during which my dad was taken to the hospital by ambulance, when we found out about the mass in his head, when he had surgery, when we got the definitive diagnosis – and his 67^th birthday which we spent hunkered down in the Neuro-ICU, in shock and in terror.

There is such a maelstrom of emotions and thoughts going on in my head right now, a source of confusion that makes it difficult to know how to identify my feelings or what needs to be done to get me through the time ahead, by me or by anyone else.  Over and over, I wonder in shock how a span of three years has passed already.  I wonder how we got through those days that seem even more unbelievably difficult from my perspective now than they did at the time.  I wonder when each of the series of shifts in me occurred after that first shift – and when, if ever, the process will slow down or come to a halt.  I wonder whether it is better to try to forget about the panic and the pain of the days of my dad's illness or to let the remaining sadness and the swirl of other emotions that goes along with the anniversary of that first week play out; I wonder if sharing my feelings and my perspective is the right thing to do.  

Remembering what was happening at this exact time three years ago is oddly both grounding and disconcerting.  Thinking back about what my dad and the rest of my family were doing in the weeks and the days leading up to the beginning of the trauma, it was as if we were on an airplane right before the plane hit an air pocket causing a sudden drop.  In regards to the significance for me of the upcoming days, a lot like the people around me now, back then I had no idea that a shift was happening, that something was occurring in those days that was affecting someone close to me and that would eventually change everything.

My dad, helping his youngest granddaughter across a rocky path, just weeks before his diagnosis

Ironwoman

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

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

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

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

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

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

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

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

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

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

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

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

There's No Place Like Hope

At about the same time that my dad was diagnosed with terminal cancer, one of his best friends was also diagnosed with cancer.  His friend had to go through surgery and chemo during the same weeks that Dad did.  That friend was so sick that he couldn't attend Dad's memorial service after Dad died.  And that friend has been battling his disease ever since, dealing with more surgeries, more chemo, more complications, more pain.

I know it must have been so hard for his friend to miss the memorial; I'm sure it must have been really tough for him to assimilate what had happened to my dad over a relatively short amount of time, during which my dad and his friend did not have contact with each other because they were both so sick.  My dad, in fact, was never told of his friend's illness; Dad was having such trouble grasping the facts of and coping with his own diagnosis, and, as I've mentioned before in regards to my grandmother's declining health, we felt that it would have been unbearable for him to hear about serious issues befalling someone he loved, especially when he was powerless to help that person.

My dad and his best friend Bob, many years ago, just before the Boston Marathon

Recently, I emailed my dad's friend to let him know that I have been thinking about him.  In his response, he said something that gave me pause: he said, "I have a chance, and I guess that's all you can really ask for in this life."

I think he's right; as long as a person has a chance, as long as they have hope, they can look forward to something better, and sometimes that's all a person needs to keep going.  

The dictionary says that hope means "to expect with confidence."  I think there's more to it than that, though.  I think hope is somehow genetically woven into our beings so that we can survive, even through the roughest of times. We are fueled and inspired by stories that bring us hope: hope and trust in mankind, hope that other people will help us when we need help, hope that tomorrow will be a better day.  We say that it gives us hope to hear about others who have succeeded or who have had something good happen to them - and we are so intrigued and motivated by the exchange of hope that there is even a website called Gives Me Hope where people can submit their thoughts about things that have happened that inspire them to hope and that allow them to believe in the potential.

For a long time after my dad died, I felt foolish when I thought back to the way we were so hopeful that he would beat the odds.  I felt like I'd somehow been tricked or that I'd misinterpreted the information in such a major way that I could never again trust that what I was seeing real or true.  Looking back at my Facebook posts from during the time when Dad was sick and seeing things I'd said like "starting to feel at least a little hopeful," I felt ashamed at the way I'd stepped out of character and had let my emotions overrule my logic.  I felt like the hope that I had clung to during Dad's illness had been unfounded, irrational, desperate, even ridiculous, but, over the course of the last couple of years, the words of my dad's friend and a few other things that have happened have caused me to start thinking of hope in a totally different way.

While my dad was sick and in the months that followed his death, I was active on a couple of websites for brain cancer survivors and their families.  I posted and commented and read the posts and comments by others about various treatments for GBM and other types of brain cancers, and through that forum I made contact with some people who had outlasted the prognosis of their disease, a few of whom had been diagnosed with GBM and had not only made it past the predicted two-year "maximum" survival time but for years or even decades longer.  While my dad was sick, I was desperate to find out what these people's secret to survival was so that I could find a way to try to make that same set of circumstances happen for Dad.  After he died, I still felt a need to know: What had these people done that we hadn't?  How had they made it, when Dad couldn't?  I'm still signed up on one of those chat boards, Cancer Compass; I don't post anymore, but I always read the new comments about long-term survival of GBM.  It might seem like I would see that as a point of sadness, or frustration, or injustice, but for me it serves more as a point of scientific curiosity - and of hope.  

In the summer after my dad died, a friend of mine who had been combatting cancer found out that her cancer had relapsed again and that she needed radiation treatment.  I offered to drive her to some of her radiation appointments.  The hospital where she had to go daily for several weeks was about a 45-minute drive from her house, and she and I commented several times during those weeks and afterwards that we had enjoyed having that time to talk to each other on the way to and from the appointments.  

I admired this friend a lot; I had always thought that she was full of great advice and, since she'd been diagnosed with cancer about five years before, of tenacity and true grit.  She was one of those people who is so easy to talk to, a great listener, someone whom I'd always felt like I wish I'd had more time with so I could get to know better.  On one of our commutes that summer, she and I had a conversation about how we both had a hard time asking for and accepting help from others.  I commented that I was much better at giving help than at receiving it, and my friend thought for a minute and then said, "I guess in a way it's helpful to let someone help you, if you think about it," words on which I would end up reflecting back countless times since then and that later inspired a perspective shift and this post about my perspective about gratitude, blessings, and philanthropy: A Gift Received.

In another conversation during one of our drives, I asked her and she told me about the timeline of her illness.  She filled me in on details that I hadn't known from along the way, including the fact that when she was first diagnosed she had been told that her cancer wasn't curable.  "How do you deal with that?" I asked her, and she responded in a voice that conveyed unlimited courage and conviction, "You just do.  For me, I just keep hoping and believing that if I can stick around long enough, somebody will find a cure. I am fighting to stay alive not because I fear death, but because I love life.  I am thankful for every day that I have in this life, but at the same time I want more, and I hope that that's what I will be given."  

Through those words and through the words of my dad's friend and those of other long-term survivors, I've started thinking of hope as good, necessary, supportive, even power-inducing; I guess my perspective about hope had changed so much that, despite what actually happened with my dad, I now don't regret carrying that hope.  I now deeply believe that there’s no such thing as false hope: I think that all hope is valid, even for people who have been given an awful prognosis like we were, even when hope would no longer appear to be sensible.  Because as far as I'm concerned, sensibility went out the window the second we heard that my dad had brain cancer. 

"I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death." ~Robert Fulghum

No Answers - Part 2: Informed Consent

Continued from No Answers - Part 1: The Oncologist

Besides the unresolved issues on my mind from when my dad
was sick that relate to the oncologist on Dad's case, another
thing that concerns me is the way that informed consent was 
handled when Dad was in the hospital.

Informed consent is the process by which a fully informed patient participates in making decisions about his own health care. It originates from the legal and ethical right the patient has to direct what happens to his body and from the ethical duty of the physician to involve the patient in the management of the patient's own health care through educating him about his condition and any proposed treatments as well as reasonable alternatives and the reasoning behind the physician's recommendation.  It also includes informing the patient of the risks and benefits of the suggested course of action and any other possible decisions after which the patient can use that information to either accept or decline the treatment.  

In cases when the patient is deemed unable to participate in this process, another person can be appointed to serve as proxy through a medical power of attorney or other legal process.  

When it became clear that my dad was not consistently oriented (i.e. he was confused about certain things) upon hospital admission, informed consent fell to my mom on his behalf.  According to the definition of informed consent, this meant that she was to be educated about Dad's condition and of the options for treatment and the advantages and disadvantages of each.  This is basic Medical Ethics 101, a process of which any physician - and certainly any surgeon - should be extremely aware.

This is where my question comes in:  Why was that process not followed?  

At admission, a neurosurgeon was assigned to my dad's case, and right away he started saying that a specific type of surgery called "debulking" needed to occur just as soon as Dad was stabilized seizure-wise.  We were never given any choice of neurosurgeon, and no alternatives to this procedure were ever presented to us.

Prior to the surgery, my mom, serving as Dad's medical power of attorney, was directed to sign the consent form that listed all the risks, but really she didn't have a choice in the matter - what was she going to do: not give the consent when we'd been told he needed the surgery to save his life??  We were 100% given the impression that the neurosurgeon on the case was the only option we had for whatever reason and that, without that surgery at that time, he would die, right then.

Later I learned that was not necessarily true.  The surgery 

could possibly have been delayed or maybe even avoided 

with no change in prognosis.  [When we met with the team of top neuro-oncologists at Duke later, we learned that the aggressive growth pattern of GBM meant that it doubled in size every three weeks and that, because of the time required for recovery after surgery before treatment could be started, since the surgery the remaining portion of the tumor had grown to almost half of what the size of the tumor was originally.  In fact, the Duke doctors said they felt there had been "very little surgical benefit" for Dad.] 

I know now that there were other surgical and non-surgical options that should have at least been discussed with us, if only to explain why they might not have been recommended by that particular neurosurgeon in my dad's case.  Because they weren't even mentioned, though, I don't know if they were viable options or not.  At that point, though, we didn't know there were any other choices and we weren't told any differently, and so we just went with what was presented to us as the only course of action.  And so I am left to wonder - why didn't the surgeon even consider trying other techniques that are frequently discussed as a treatment for brain cancer, those that are showing evidence as giving a better surgical and prognostic outcome - things like intraoperative stimulation mapping and Gamma Knife radiation?  Why didn't he bring up the option of delaying surgery to investigate the use of gliadel wafers (which are implanted to deliver medicine right at the tumor site) or to look at the possibility of taking a sample of the tumor for use either for testing to see if the cells were chemo-resistant or for an dendritic cell tumor vaccine?  

Back then, though, we didn't even know what questions to ask, or even that we should be asking questions.  We didn't think about getting a second opinion or doing a background check of any kind on the neurosurgeon, at least partially because we were told that time was of the essence.  I think we assumed that particular neurosurgeon was the best at that hospital or at least that he was the neurosurgeon with the first opening in his surgical schedule.  It seems crazy to me now when I think that I never asked how many of that type of surgery that neurosurgeon had done or how many patients with that same diagnosis were treated in that hospital per year.  [I later asked a nurse on the oncology floor how often they saw GBM patients there, and she said once or twice a year.]  I remember all too well that we were in such a state of shock and panic and so frantic to try to take care of and to protect Dad that we didn't have time to research things.  We just trusted the advice we were given and forged ahead.

These days, I have a note in my cell phone that lists things I want to remember if I am ever in a similar situation (Is that doomsday thinking or preparedness??  I'm not sure.).  It includes these statements:

*When a doctor (or other medical staff member) makes a recommendation, ask what else they considered or could have considered and WHY they came to the conclusion that they should recommend that specific thing.
*When making a decision as to whom (or to where) to turn for care, directly ask WHAT MAKES YOU DIFFERENT FROM OTHER DOCTORS (or what sets this facility or service apart?)? 
*ALWAYS ask what that person's (or that facility's) experience with that diagnosis, that surgical procedure, etc. is SPECIFICALLY, termed in frequencies and outcomes.

In my dad's case, though, without a doubt, we did what we knew to do.  The rest just wasn't something a person would know in everyday life.  Was the right choice made?  Yes, based on the options we were given at the time.  What would we have done, if we knew then what we know now??  Of course I will never know, nor would I if we had been presented with all of the possible choices and then given the opportunity to select one.  But at least in the "fully informed" scenario, we would not feel as if there were facts we weren't told or options that weren't considered.  Today, in the midst of my grief, I certainly don't feel that there was any effort at all by the medical team to try to individualize Dad's treatment, and I am left to wonder why we were only given certain information.  Did the medical team actually feel as if it were our responsibility to do the research and then to ask questions about the other possible treatments?  Did they have such as strong opinion about what the best course of action was that they didn't tell us what else could have been done?  Did they think we were somehow incapable of understanding the more complex information about other options?  Did they think we (or Dad) weren't deserving of knowing about those alternatives?  Did they themselves not know what else was available?  Did they lack the training in performing the other techniques?  Chalk that up to the list of things we will never really know.

Not Knowing, Part 2

Continued from Part 1

It's not always easy to visit someone in a nursing home; seeing a person that you care about in that type of environment often brings up a lot of emotions, some of which are not very pleasant.  Although I did it as often as I could, before my dad got sick, I thought it was emotionally difficult to visit Grandmom; she had changed so much in such a relatively short period of time, and she seemed so sad, so lost, so much of the time.  

Dad with his mom, on her 89th birthday, one year before she was put on hospice and 13 months before he was diagnosed with brain cancer

After Dad's diagnosis, though, it was even harder, physically - because my sisters, our mom, and I needed to be with Dad - and emotionally - because we had decided not to tell Grandmom about Dad's condition.  When we went to see Grandmom during that time, we had to come up with things to talk about in her presence that didn't have to do with what was going on with Dad, which was very challenging because, truth be told, Cancer and the things that came with it were pretty much all any of us were thinking about then. But we did what we had to do, and we visited Grandmom as often as we could, as Dad made it through surgery, and then went to rehab, and then went to the Brain Tumor Clinic at Duke, and then started chemo.

My family had made the decision not to tell Grandmom about Dad's illness early on; when my sister and I went to visit at the nursing home for the first time after Dad had been diagnosed, we shared the bad news about Dad with the staff there but made it clear that the information was not to be shared with Grandmom as we did not want to upset her.  Then, when Grandmom took a turn for the worse on the day after Thanksgiving, we took that decision a step further by extending the shelter to Dad as we kept the news about Grandmom's decline from him. As we had been doing with his mom, we didn't want him to have to worry or to feel guilty about anything, given what he was battling himself at the time.

Even after the hospice nurse predicted that Grandmom wouldn't "be with us" for more than a couple more days after that, somehow she pulled through, a testament to her strength and a sign of what we later realized but didn't know at the time - looking back from our vantage point now, it seems that Grandmom was waiting to say goodbye to her son, and, not realizing why he wasn't there so that she could do so, Grandmom hung on, literally for dear life.

Me, showing Grandmom one of the cards she got for her 90th birthday, just before she went on hospice care

After Dad's second round of chemo, at his insistence, my mom and my sister Nancy took him to visit Grandmom at the nursing home.  He had been getting around my parents' house using a walker, but he had a wheelchair for longer distances and that's what he used for transport that day.  As always, Grandmom smiled from ear to ear when she saw Dad that day; discordantly, in what I saw as both a relief and also an alarm, she did not seem to notice the wheelchair or the jagged scar on his head at all.  

Not long after that, Dad had to go to the hospital for the second time and was in such critical condition that it was all we could do to manage the care that he needed between my mom, my sisters, and me. My sisters and our children visited Grandmom on Christmas Day, again keeping the news of Dad's situation from her, and reported back that she was doing about the same, holding her own and hanging in there.  Other than that, though, for the ten days we were in the hospital that second time around and during the six days after that when Dad was home before he went on ahead, we relied on reports from the hospice nurse who called every two or three days to report on Grandmom's condition, and we were relieved each time to hear that there had been no change on that front.

Christmas Day 2010

When we made the decision to bring in hospice care for my dad, it was difficult to wrap our brains around the fact that both he and his 90 year-old mother were both on hospice.  The way that Grandmom had defied the odds so far, despite the fact that her doctor and later her hospice nurse had both said her days were numbered - not once but twice, over the few months preceding that time - allowed us to believe that Dad would persevere and beat the odds as well, thus potentially allowing both of them to be with us for some time to come.  Those rose-colored glasses were a very powerful coping mechanism for us at the time, but they were also what created the perfect storm-type of setting for my family to enter into a state of utter shock when Dad went on ahead, less than a week after he came home from the hospital and hospice care had begun.

We just thought it was hard to visit Grandmom before all of this happened; after Dad's death, it was an overwhelming and almost insurmountable feat, for so many reasons.  Again, the shock that we were all dealing with in our early grief made it difficult to put one foot in front of the other at that point; I personally felt as if I was in the middle of a nightmare from which I kept expecting to awaken.  Dazed, confused, stunned, devastated - all of those things made it challenging to do much of anything in those days.  Pretty much everybody that I came into contact with in the month or so after Dad's death knew what my family had been going through, and so thankfully I was spared having to say the words about what had happened out loud:  saying My dad died was something I was not adequately prepared to get through for many months after the fact.  Telling Grandmom that her favorite person in the world, her son, whom I am sure she still thought of as her baby, as someone for whom she was responsible for protecting in many ways, was no longer on this earth, was more than I could cope with at that time.  Even more than I didn't want to tell her, though, I didn't want her to have to know.  Whenever I thought about breaking the news about Dad's death to Grandmom, I kept going back to what I had learned for myself the night before Dad's surgery and what I still believed to be true: not knowing is not always the worst thing.

I saw a story today about an Olympic diver from China whose family kept the news of the deaths of her grandparents and of her mother's battle with cancer from her for years while she was away living at a training camp, presumably so as not to distract her from achieving her goal of winning a gold medal at the Olympics (which she just did). 

CLICK HERE TO READ THE STORY

I realize that the vast majority of people who read that story will think it was unreasonable or possibly even cruel to have kept that news from the young athlete, but I just don't think it's something that can be adequately understood by those of us who live in situations were there hasn't been such value placed on competition and on winning .  I think such values, much like grief, can result in some very different choices being made, but that doesn't necessarily make those choices wrong.  For the most part, all of us do what we think is the right thing to do in the given circumstances, given our resources and our perspective, and I'm sure that's what this girl's family was doing as well, just as we were doing by not telling Grandmom about Dad.

Sometimes, though, lessons can only really be learned by living, and perspective can only be gained through experience.  A few weeks after Dad went on ahead, my mom started getting phone calls from the nursing home about an increase in Grandmom's levels of sadness and anxiety.  Grandmom actually had several episodes of what I can only think were panic attacks; she could not communicate clearly enough to explain to anyone what was going on, and so the only thing anyone could think of to do to help her was to increase her anti-anxiety and anti-depression medicines.  That ended up helping some, but we continued to get reports that she still she seemed distressed much of the time.

Not long after Dad's memorial service, I started going to a grief counselor.  The first thing I asked her in our first session was if she could recommend any books for me to read that might help me.  (Side Note:  That was the beginning for me of a shift from being obsessed with researching treatment for brain cancer to being nearly consumed by wanting to learn more about grief in an effort to cope, something that I continue to do even now.)  The book she suggested was "Final Gifts", which was written by a hospice nurse named Maggie Callanan.  In reading it, I learned many things and gained a new frame of reference, and I also started to think that maybe we were making the wrong choice by not telling Grandmom the truth about what had happened to Dad.

Continued ... Not Knowing, Part 3

Not Knowing, Part 1

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

Kind of like my dad, she lost her independence in the blink of an eye, never to regain it, even though we had hopes that she would, at least to some extent.  Kind of like my dad, she was in very good shape physically and mentally, until her illness struck.  But unlike my dad, in addition to her physical skills, her cognitive abilities also were severely affected as a result of the stroke, and she did not have anyone in her area to take the kind of care of her that was required after that or the resources to have it provided in her home.  And so, as her hospital stay after the stroke was coming to an end, a skilled nursing facility was strongly recommended by the medical staff, and my parents decided to move her to one that was close to their house, one state over from hers.  

The downside was that the move disoriented her more and that, since it wasn't feasible for her friends from her hometown to visit her several hours from her hometown, she ended up being pretty isolated there, at least from people who had been involved in her life as it was before she got sick.  The upside was that my parents were able to check in on her several times a week and to make sure she was getting good care, and the rest of us were able to see her too whenever we were in town.  After the initial landslide loss of function, her memory and her physical status continued to deteriorate, a little at a time.  Eventually she was diagnosed with Alzheimer's Disease and she wasn't even consistent in recognizing those of us she had known for all of our lives, but she always recognized her son, my dad.  

Grandmom's first Christmas in the nursing home

Dad and I discussed many times over the years how tough it was to see Grandmom be so changed, so dependent.  She had always been a bold woman who strived to do things for herself and to do her part in making the world a better place.  All her life, she had lived on a fixed income; she did not have fancy things or take fancy trips, but she was grateful and generous and happy all the same.  Before she got sick, at the beginning of every year, she wrote out a detailed budget for herself for the upcoming year and mailed it to my dad.  The few times I happened to see what she'd written, I was flabbergasted at how specific it was and at my grandmother's frugality, and I was amazed that despite the limits of her finances she still committed to tithing to her church year after year.  She was not what one would call a Southern belle; rather, she was much more of an activist and a liberal-thinker for her time who valued individual rights and freedom for all.  

QUITE THE DAREDEVIL IN YEARS PAST:  With her younger brother Freddie, in Daytona Beach, FL ...

... and riding the bull at Gilley's

When Grandmom first got to the nursing home, she needed supervision around the clock and help with some things, but there were some things about her personality that were still the same.  She had always been a competitive person, and we saw shades of that come out in things she did there too; once when we visited her she told us she was the fastest person on a walker in the whole place.  Another time she proudly informed us that she had won the Bingo game there the day before, and she showed us a ladybug broach that she'd won for proof.  She was always so grateful for visitors, even as she became unclear on exactly who we all were, and she especially lit up whenever she saw my dad.

About a month before Dad was diagnosed with cancer, he and my mom sat down with Grandmom's doctor to discuss her steadily declining condition.  She had become completely dependent on others for everything, including feeding herself, and had been having some trouble with swallowing that seemed to indicate that she had had one or more mini-strokes that were hastening her decline.  Because of the swallowing difficulties, she was at risk for pneumonia and she was also having bouts of depression and anxiety, even though she did not seem to be aware of where she was or what was going on around her most of the time.  The physician recommended that my dad, who held Grandmom's medical power of attorney, enroll his mother in hospice care, which meant that she would continue to be cared for in the nursing home but that she would also be monitored by medical staff from a hospice agency who were specifically trained in end-of-life comfort care.  Wanting the best possible care for his mom, Dad signed the papers with a heavy heart; he'd committed to providing for and to looking after his mom years ago and felt in his heart that this was the best choice for her, as did we.

Worrying about her, her prognosis, and her comfort continued to weigh heavily on my dad in the days ahead; in fact, the last text message I ever got from him, which was just before he was diagnosed, was about his concerns for her.  He said he felt that she was declining so quickly that he didn't think she would survive even one month longer.  He said that he was worried about how "the girls" (meaning my children and my nieces, all of whom had visited Grandmom in the nursing home recently but had not seen her in her present condition) were taking the news of her decline; the whole situation was both difficult and sad for everyone involved.  Dad continued to visit his mom whenever he could, as did my mom; thinking about her was a part of their normal routine. 

Dad last visited him mom in the nursing home the day before he was rushed to the hospital and the mass in his head was discovered.  Suddenly, his own health was unstable and his life was at risk, weirdly and shockingly in some ways even more so than his 90 year-old mother.

In his typical way, though, he continued to worry about his responsibilities (his mom being one of the things topping his list) throughout the course of his illness, despite the fact that he was very sick himself.  During his first hospitalization and his stay at the rehab hospital, my sisters and I stood in for Dad, with at least one of us checking in on Grandmom every few days.  It was something we were glad to do; it felt like helping to take care of her was also helping to take care of him.

The first time we went to see her was the day after Dad's surgery.  My sister Jennifer and I went, while Mom and Nancy stayed at the hospital with Dad.  We were still reeling from having just been given the devastating diagnosis less than 24 hours before, and walking into Grandmom's room in the nursing home with a smile on our faces as if nothing was wrong was tough, to say the least. I couldn't shake the anguish that came from thinking about how much had changed in the six days it had been since Dad had last been there to visit his mom, but I felt in my heart that the news that Dad was so sick that he was unable to visit her would be more than Grandmom could (or should have to) handle at that point.  Neither of us is much of an actress, but, for Grandmom's sake and for Dad's, thankfully Jennifer and I pulled it off, and I was glad we were able to spare her the pain and fear that had taken root in the hearts of the rest of us who did know the truth.

After we told Grandmom goodbye in her room, we went to the nursing station down the hall to talk to the nurse who was taking care of her that day.  My mom had been doing Grandmom's laundry, collecting her dirty clothes weekly and then washing them and returning the clothes to her; however, given what we were faced with dealing with at that point, we decided to tell the staff that we wanted to have the laundry done at the facility until further notice.  "I'm Nellie's granddaughter," I said, "and I need to let you know that my dad is very sick and so neither he nor my mom will be able to visit her for awhile.  In fact, I need to give you my contact information and ask that you call me in case of emergency or if Grandmom needs anything."

Behind the desk, the nurse and several nursing assistants all stopped what they were doing and looked at me like I was speaking in tongues.  One of the CNA's leaned in and said, "Are you talking about that really nice bald-headed man that visits Miss Nellie all the time?"

"Yes, that's my dad," I told her.

"He's not sick," she asserted. "He was just up here to see her a few days ago, and he was smiling and joking around like he always does. He's the picture of good health!"

I could tell by the looks on the faces of everyone who was listening that they thought I was mistaken.  I understood their thought process; it was the same one that was going through my head repeatedly, fueling my shock and disbelief as well.  I gave them a brief run-down on what had happened: "He got sick while he was out running last Saturday and was taken to the hospital, where they found out he had a mass in his head.  Yesterday, he had surgery, and we found out that he has brain cancer."  There.  I said it, out loud, for the first time.  I felt sick to my stomach, until the voice in my head told me that it wasn't true, it couldn't be true.  

But it was.  In what would become a pattern from that moment forward, as soon as I delivered the awful news about my dad, I was put into a position of having to try to comfort the recipients of the news.  The second after the words left my mouth, I felt guilty about having had to deliver such a blow.  I've since learned that there is a term for something like this called  'vicarious traumatization,' which happens when a trauma specialist spends day after day being exposed to another's trauma.  But it was necessary that they knew, and the news was out.  "We do not want my grandmother to be told about my dad; please make a note in the chart and be sure everyone knows."  I stood there watching them try to keep their composure, until the nurse whom I had originally addressed stepped from around the desk and hugged me.  When she backed up, she had tears in her eyes, and she said, "I'm so sorry.  Please tell him and your mom that we will take extra good care of Miss Nellie."  I swallowed my own tears, thanked her, handed her a piece of paper with my contact information and instructions about having the laundry done for Grandmom on it, and backed away, before I lost it.  

Thinking back, I wonder if what I thought was true actually was:  did I insist that Grandmom not be told because it was better for her, or for us?  Was it too much for her to handle having to hear the news, or for me to have to tell her?  Was it taking the easy way out in avoiding having to deal with her emotions?  Was it protecting her or us?  I think it was for her sake, and for Dad's, but like a lot of things that went on during that time, I can't be sure.  Whether or not it was right to decide not to tell her that day and in the weeks that followed is something that I have questioned many times since then.  Regardless, though, with Grandmom's care squared away, Jennifer and I left the nursing home and headed back to the hospital.

In a life-is-weirder-than-fiction moment, later that day we discovered that Robbie, one of the nurses that was on Grandmom's hospice service, also worked at the hospital where Dad was.  She heard about Dad from the nurses at the nursing home and came to see Dad in the ICU.  (Maybe she was verifying the accuracy of what I'd said for the rest of the staff at Grandmom's facility.)  It seemed to confuse Dad at first when he saw her there, which I actually thought was a good sign, because it was kind of puzzling to have someone involved in Grandmom's care show up on the scene at the hospital where Dad was.  Robbie asked some questions about what had happened and about what was going on with Dad, and then she told us that she would check in on Grandmom more often than usual and would report back to my parents.  We were grateful to have the help; it eased our minds, especially Dad's, to know that Grandmom would be getting some extra attention and interaction.  

It's funny how what seems tragic can change in a single moment.  As things were, after the news of hospice care having become necessary for Grandmom, my family was grieving.  It seemed terrible to have had to watch her decline as she became more physically challenged and more disoriented.  And now, in the blink of an eye, the tragedy had changed, or maybe it had just widened; our perspective and possibly even our forbearance had been altered by Dad's sudden illness.  I think we just thought that was the one-two punch that we just had to get through, that if we could rally and shore up, things would get better.  We had to think that way; it was the only thing keeping us from falling apart.

To Be Continued ... Not Knowing, Part 2