A Letter to the Director of Nursing

In honor of Nurses' Appreciation Week this week, I am posting a letter that I recently sent to the Director of Nursing at the hospital where my dad was treated in hopes that she is able to use the information I provided to recognize three nurses at that facility who provided truly extraordinary care during my dad's illness.

Dear [Director of Nursing],

I am writing to let you know about three nurses who provided outstanding care for my father, William L. Bullard, when he was a patient on the oncology floor in December of 2010.

My dad was initially hospitalized at Centennial just a few days short of his 67^th birthday on October 23, 2010, when he was transported there due to disorientation experienced on a ten-mile run.  An MRI showed a large mass in his brain that was later revealed to be Glioblastoma Multiforme, which as you know is Stage IV brain cancer. He had surgery and spent a few days in the Neuro-ICU and then a few more on the Neuro floor, and, although in both cases the nursing care was adequate, my family was glad when he was discharged after a total of ten days there. 

A few weeks later, on December 21, 2010, my dad was re-admitted to Centennial, and again in the ER the nursing care was fair, in most cases competent but not outstanding by any stretch.  When he was moved up to the Oncology floor, though, we were lucky enough to have our case assigned that night to a nurse named Meredith who provided exceptional care for Dad and who took both Dad and my family under her wing, even requesting to have Dad as her patient on other shifts she worked while we were on her floor over the next several days.  She provided highly commendable care for Dad and for us; she seemed to see not just Dad but those of us caring for him as her patients, and she gave us not only the physical support we needed but some much-needed emotional support as well.  As my sister later said, Meredith appeared to see Dad through our eyes, and that is something that was so significant to us and that we will always remember. To us, Dad wasn’t a terminally-ill cancer patient; he our champion, an Ironman athlete, brilliant in thinking and indomitable in physical presence.  Very unfortunately, though, during the course of his illness, the majority of the health care workers with whom we came into contact appeared to see him just as a patient, and honestly it seemed like some of them didn’t really see him at all.

My dad was very sick and as a result was intermittently confused and distressed while we were in the hospital that second time, but he took an instant liking to Meredith, as did we.  She bore a resemblance to one of my sister’s best friends from high school, a girl named Angie.  Despite the fact that Dad hadn’t seen Angie in many years, he too noticed the similarity in Meredith’s appearance and started calling her Angie, which Meredith said she took as a compliment.  “I feel like I’ve known you for a long time, too!” she told Dad, which made him smile and warmed our hearts.

Nurse Meredith, aka “Angie”, was with us again for the 7 p.m. to 7 a.m. night shift that second night we were on the Oncology floor (12/22/10).  My sister and I stayed overnight with Dad and were impressed by not just Meredith’s competence but also by her compassion and her coolness under pressure, particularly when things started spiraling out of control for my dad late that night.  For no apparent reason, his heart rate shot up and he started having trouble breathing; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Dad’s heart rate continued to climb, and then he started saying he was freezing and then making comments that we didn’t quite understand, with lots of talk about death which shook my sister and me to the very core.  Despite the temperature of the room being warm and several blankets being placed over Dad in the bed, his teeth were chattering so much that we had to strain to understand him. 

My sister and I were terrified; we agreed later that it was the first time we thought Dad was actually going to die right in front of us, and we felt completely helpless.  Meredith stayed right with us and was such a calming force for Dad and for us.  At one point, the three of us were almost lying on top of him trying to warm him up and to calm him down.  After more than an hour, we realized that neither verbal nor physical comfort measures were going to be effective in battling the panic and the terror Dad was experiencing, and Meredith raced to get a sedative for Dad, which, five minutes later, had him resting soundly.  

Looking back, I’m not sure that my dad would have made it through that night without Meredith, and certainly my sister and I would have been much more at a loss without her expertise and, more importantly, without her kindness, which is something that stays with us to this day.

Although Dad ended up being stabilized for the night, unfortunately his condition continued to deteriorate, and, on Christmas Eve, he was transferred to the ICU – actually, due to hospital staffing shortages during the holidays, to the CCU.  There we dealt with many challenging issues, some involving nursing and some not, but suffice to say our stay there was a terrible experience overall, and we were very glad when Dad was moved back to the Oncology floor two days after Christmas – and even happier when we realized that we had once again been lucky enough to be assigned to an exceptional nurse, this time in the form of an RN named Dave.  Again due to staffing problems that we didn't really undersand, my dad was placed on a unit that didn't really fit with his diagnosis; this time it was the Bone Marrow Transplant unit on the Oncology floor.  

My dad had been struggling to take in enough calories for quite some time; he often reported feeling “zero hungry” or, even worse, feeling nauseous at just the idea of food. When we clued Dave into the fact that we were very concerned about Dad’s caloric intake, Dave offered lots of “extras,” some of which Dad said “yes” to and then ate (including a Snickers bar).  Without even being asked, he brought extra blankets because Dad continued to say he was cold, and he provided extra pillows to prop Dad up so that he felt warmer and more secure.  Unlike our days in the CCU, with Dave it felt like we were no longer having to beg for what Dad needed; in fact, it seemed like Dave somehow anticipated not just Dad’s physical needs but also many of his emotional ones as well.

Throughout his stay in the hospital this second time around, including the four days in the ICU, pain from a bed sore on his lower back had continued to plague Dad.  Dave was excellent at gently re-positioning Dad in different ways in the bed so that the pressure was taken off that area; he made an effort each time he came into the room to explain what he was doing and why to Dad and to us and even had me demonstrate my understanding of skills like propping Dad up with lots of pillows and rolled blankets.  He wasn’t just acting as a nurse; he was also a teacher and a friend.

Tag-teaming with Day Shift Dave, as we called him, was Night Shift Jim, another nurse in whose care we were grateful to have Dad placed.  Like Dave, Jim was very patient in teaching us about how to address Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

After almost two weeks of seeing Dad in a downward spiral, one morning I stood in the hallway outside of Dad’s room crying, and Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist during which I had asked how we would know when it was time to consider hospice – and the oncologist had essentially said “Not yet,” which I felt like was not an answer to my question.  “He doesn’t see what we see,” Dave said.  “I know!” I wailed.  “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen.  Sometimes treatment doesn’t work.  Sometimes treatment isn’t what a patient really needs or wants.  Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.”   As my sobbing subsided, I considered his words carefully.  I knew we needed help and more information before making any kind of decision.  I knew we had to figure something out and that we needed to do it quickly. 

Later that day, my sister and I approached Dave to talked more about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically, ‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  I'm sure he realized the ridiculousness of my request - as if shielding Dad from knowing about hospice could save him from what I really wanted to protect him from - but he respected my grief process and also, I guess, my need to try to control the very few things that I possibly could at that point, and I was very grateful for that.

While Dad slept that night, my sisters and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and even helped us to make a list of supplies that we would need to have on hand at home, again honoring our desire to feel that we had some kind of command over an out-of-control situation.  He sang the praises of hospice care and of the support they had to offer, which we soon learned to be the absolute truth. 

Looking back at my dad’s last few days in the hospital, which turned out to be just about a week before he died, I am not sure my family would have decided to take Dad home on hospice there at the end without the input and the support we received from both Jim and Dave.  For my family and certainly for my dad, as my mom and my sisters and I have discussed many times over the past couple of years, while changing the setting in which Dad spend his last few days probably wouldn’t have lengthened his life any, having him at the hospital instead of in the comfort of my parents' home certainly would have changed the quality of that time for him – and for us, and that is why we will forever be grateful for the way things happened there at the end of Dad's hospital stay.

I can’t count how many times over the past couple of years I have intended to try to get a message to these three nurses to thank them.  I hope they are still with Centennial and that the details I have provided will help you to identify them so that they can be recognized, although appreciation in any form seems inadequate given the gift with which they left my family through the truly exceptional care they provided during the most difficult time of our lives. 

In case this does make it to Meredith, to Jim, and to Dave, though, here’s my message: thank you, and may your kindness and your skill be recognized and rewarded; my family will never forget you.

Very sincerely,

Stephanie Bullard Lancaster

Memories and Exit Ramps

Traveling along the highway of life with a luggage rack loaded with grief, it often seems there are endless reasons and opportunities for taking an exit ramp, as situations and conversations bring forth memories from previous experiences related to pain and loss.  I try to keep my eyes focused only on the space illuminated by the headlights directly in front of me, but sometimes things on the side of the road or off in the distance catch my eye, and looking at and even following those sightings cannot be avoided. There are lots of things along the way that I didn't think I was going to have to face - some of which I hadn't even be aware before I'd traveled this very road - and, once I was and once I did, that we didn't think I was nearly strong enough to traverse. The triggers that force me to exit for pit stops can come from varying sources - reading about or hearing about someone else with a similar story, being asked for advice related to my own struggle, or even just watching others about whom I care go through a trial like my family has since the time when my dad got sick.

Interestingly, I think, at some of those exits are emotions that are strangely unlike those I felt while I was beginning my own journey down this rough part of the road, in this construction zone of sorts.  I remember the feelings of powerlessness, sadness, confusion, and anger from during that time, but, looking at it at this point through my "things may appear smaller than actual size" rearview mirror, especially if I am able to offer anything at all to someone else from this vantage point, makes me feel strong and useful, ... a Silver Lining I suppose, one that I hope translates into a benefit for someone other than just myself. 

Over the past couple of weeks, I have been slowed in the right-hand lane as I've watched my friend and her family bring her father to hospice care on Friday two weeks ago and then say goodbye to him on the following Wednesday, the exact time frame that my family had with my dad.  I remember how in my family's situation there was so much to do, an overwhelming amount of things in fact, and then there was nothing.  I know all too well the pain and the helplessness and the feelings of such utter loss and despair that they were feeling as they prepared for the funeral, and I remember how I thought things couldn't get any harder but then how in many ways it seemed like they did after I went home after the memorial service and found my job and other responsibilities waiting for me.  After my dad's illness and his death, it felt like the emptiness, the loneliness, and all the other emotions were something with which I didn't think I could cope or even survive, but somehow I found a way, as I know my friend and others in her family will too.

In addition to having the perspective from inside the rawness of the grief, I now have somewhat of an idea of what it felt like for those around me in those early days of peregrination; it feels like running in place or maybe like being on a scavenger hunt of sorts.  There is so little that can be done to ease the pain of those who have been forced to enter onto this highway; the best I can try to do is just to ease off the gas pedal in my own vehicle to let them merge into my lane, to give them a nod of acknowledgement, to let them know that they are not alone.

"There is a sacredness in tears" ~ Washington Irving

The Hospital Bed

I had a dream last night about the hospital bed that my dad was in when he died.  Actually maybe it wasn't that bed; maybe it was just a generic hospital bed.  Oddly, nothing was going on in the dream; it was more like a still photograph than it was like a movie - there were no characters and there was no plot or script.

But that started me thinking about hospital beds and the one that ended up being the last bed my dad ever slept in before he went on ahead.  I think that most people, including me prior to the end of my dad's illness, consider a hospital bed to be a white flag of sorts, a surrender of lots of things, the most obvious of which is one's independence.  The day that the hospital bed was delivered and set up in my parents' house, though, in preparation for my dad's being able to come home from the hospital so that he could spend his last days in a more familiar, more comfortable setting, that bed represented so many other things for my family; it was obviously a consolation of sorts, but one that brought with it the power to give Dad what he so desperately wanted and to release him from the jaws of the downward spiral of pain and anxiety that just kept getting worse in the awful environment of the hospital.  

The bed itself seemed alarmingly flimsy, I thought, insubstantial but sadly adequate to hold my dad's then-frail body.  The frame seemed almost like it was made of wire that was wound together, fabricated without regard to aesthetics, as far as possible from a piece of furniture that would otherwise have been allowed in my parents' house and just sturdy enough to get the job done.  Its defining feature was a rickey little hand crank at the foot of the bed that could be used to adjust the head of the bed up or down.  It was a shitty little crank, really, and thinking back to the cheapness of it makes me both sad and mad - sad for our situation and for the way we had to handle every damn detail in the whole chaotic situation ourselves except for a little help from the hospice company at the very end, and mad for the shittiness of the crank itself: for god's sake, couldn't the insurance company drum up a few bucks more to send us a bed with an electric crank?  Wasn't the situation itself torturous enough without one of us having to use such a rudimentary apparatus, like it was the 1950's or something?  

But we were grateful for the bed with the old-timey crank; we were grateful that hospice had arranged to have it delivered, and we were as grateful as we could be that we were able to arrange for Dad to come home as he had been urgently requesting, actually begging, from his higher-tech bed in the hospital.  

I only vaguely remember the scene of when the guy from the medical supply company came to pick up the bed when Dad was done with it; in fact, I don't even remember if there was only one guy that came or if there were two.  I remember thinking, once they had taken it away, that my parents' bedroom suddenly seemed heartbreakingly empty, even though the hospital bed had only been in there for less than a week and even though my husband and my brother-in-law had moved my parents' king-sized bed back over to the center of that part of the room as it had been before we'd had the hospital bed set up beside it; things we set up like they had been before, but nothing was as it had been.  I remember standing in the space where the hospital bed had just been just minutes before, with tears running down my face, looking down and noticing that there weren't any indentions from the wheels of the bed left in the carpet and wondering how in the world a visible mark hadn't been left where something so big had happened.

No Answers - Part 3: Doctors and Death

Continued from No Answers - Part 2: Informed Consent

There are some questions that are probably commonly asked by people who are left behind after a person with a terminal illness dies, questions to which I realize there are likely to be no answers but that keep coming back to me nonetheless.  Some of these are centered around patient care; as a health care worker myself, I fully understand the difficulties of staffing shortages, paperwork demands, insurance issues, and the like.  But I also think that there are unfortunately some health care workers, including some doctors, who aren't really focused on the quality of their care.  

We came across some of those in my dad's case, and I will always remember them, just like I will never forget those who provided my dad and my family with outstanding care and compassion.  I just wonder if any of them will remember my dad.

I think there should be some kind of required continuing ed for  physicians, and maybe for nurses and some other health care workers too - especially those who frequently treat patients with catastrophic diagnoses - a training that could help them to realize (or to remind them) that patients are PEOPLE, not cases or numbers or statistics. I view much of what happened  in my dad's care as being a symptom of what's wrong with our health care system (and maybe even with our society) today: so often we just accept and often even continue to put on a pedestal the physicians who don't or can't take the time to stay on top of patient care as we FIGHT for treatment, for attention, for proper care. The utter lack of case management and the absolute lack of follow-through and follow-up are perhaps what disturb me the most about what went on during Dad's illness.

Here's something else I wonder about: how much - and what kind of - training is given to physicians, in particular to oncologists - about helping patients and their families deal with end-of-life decisions, and about coping with such matters themselves?  A thought that keeps coming back to me again and again is this: I know physicians take an oath to "do no harm," and yet in some cases those same doctors continue to prescribe aggressive treatments and fail to present hospice - or other types of palliative care - as an option, presumably based on the fact that those doctors assume the patients want to fight to the end.  How much of a doctor's own perspective is imposed on that of his patients?  Even the most well-meaning physician could feasibly become so emotionally attached to a patient that he forms an opinion based more than just medical knowledge about what choices that person should make, and that could easily impact the type or the amount of information he presents - or the way that he presents it - to the patient and the patient's family.

And so the question becomes - where does the "treatment" end and the "harm" begin?  When does the good (or the possibility of good) stop outweighing the bad, the awful side-effects and the risks??  It becomes a judgement call, one that can easily be made with emotion interlaced with the medical knowledge.  In fact, isn't that what we want in a doctor: someone who cares about us on a personal level??  And yet that very situation could affect our care by playing into how our doctor handles things on down the road.

I think this is particularly tricky in the case of an oncologist.  Cancer doctors are in the business of providing Hope to their patients.  Many of them spend more time per appointment with each patient than doctors in other specialty areas do, and they usually see their patients more often than other doctors do too.  As well, the subjects that are discussed within the walls of the rooms in the oncologist's office are very often much more emotional than the usual chit-chat that goes on in the offices of other doctors.  All of this leads to the establishment of more of a connection between an oncologist and his patients - again, not at all a bad thing, but something that must enter into the recommendations given about treatment, including end-of-life treatment issues.

In a situation with a terminal diagnosis, I know all too well how very hard to figure out the balance between hope/pushing forward and acceptance. The oncologists we dealt were only recommending aggressive treatment; looking back, I have to wonder if it was because they were full of hope/faith or if that was just their focus and their training. I know that some oncologists are better about that than what our experience was and that some try their best to keep a patient's overall well-being in mind rather than just trying to have a great case to write up in their medical journals. But still, when the patient is you or your loved one, you have to do two things: you have to have Hope, and you have to have faith that your oncologist is looking out for your best interests (and that he/she knows what those interests are).  What we found is that in a situation like ours Hope is linked to goals that peel off in layers like an onion - hope for a cure, hope for treatment that gives more quality time, home for comfort, hope for him to be pain-free and hope for peace.

As I said in the last post about informed consent, the options just weren't presented to us or to Dad; the oncologist originally told us that we would be taking Dad home from the hospital just a few days after brain surgery, but, at the urging of the hospital physical therapist who had seen Dad a total of one time, the doctor ordered that Dad go to rehab, where essentially Dad's care was managed for the most part by the Rehab Director, whom we later realized knew little to nothing about GBM and its treatment.  We saw the reasoning behind Dad's participation in a short-term rehab program; the way we looked at the treatment as opposed to a "just going to a beach" scenario was to picture my dad a little further down the road.  We hoped - and we believed - that Dad would improve which would make the rehab stay well worth the effort, and we knew that Dad would want to go "all in" until he couldn't.

At one point in looking back at what we decided on for my dad, I said that if I had to do it again I wouldn't have had him go to three weeks of rehab (because he didn't get better functionally during that time), but then my mom pointed out that if he hadn't gone, he wouldn't have  even had the chance to have gotten functionally better and we would probably always think it was because we didn't have him go. In other words, we would have linked the lack of quality of his life to our decision for him not to go to rehab, even though we learned through having him go that there wasn't a link or a possibility for him to gain more independence, based on his individual set of circumstances.

Another obstacle for physicians in caring for terminally-ill cancer patients has to do with the rules of hospice: in order to qualify for hospice, a cancer patient not only has to have a life expectancy of less than six months but also must agree to forego any further chemo treatments of a "curative" nature.  When you think about it, that isn't really fair, especially considering that patients with other terminal conditions aren't forced to stop their medications to enter into a hospice program.  I can see how it could be difficult for an oncologist to switch over from thinking "I am going to help this person beat the odds" to a mindset of comfort-care only.  I can see where an oncologist would keep wanting to offer more - a Plan B, and then a Plan C, and so on, offering Hope, if not for a cure then for improvement.  I can see where the concept of quality of life (what even is that for most terminally ill patients?) can be confusing.  Once the cancer has set in for good, there often isn't a whole lot of quality, especially if brutal treatments like some chemos are continued, and so it become a judgement call, which must be made based on the experience of the physician and, of course, on human emotion.

Consider this:  when a person goes to the doctor for a more run-of-the-mill illness, like a sinus infection or or a sprained ankle, the doctor doesn't give that person a choice as to whether or not he should be treated or as to what the treatment will be.  As long as there is a clear course of action in treating the condition, the doctor orders the treatment.  

In rarer cancers, and certainly in cancers that are being considered terminal, that changes.  The oncologist presents the patient and/or the patient's family with options and gives them the power (and the burden) to make a choice.  Sometimes the patient even finds out about treatment ideas on his own and presents those to the physician.  Once everything is on the table, though, inevitably the question that is asked of the oncologist is this: What would you do if this were you or your loved one?  And that's where the personal opinion and the emotion and the potentially-clouded judgement come in.  It's what we ask for at that point, because we have no idea what else to do.  We need to feel that we can trust someone, and we hope that that person can offer us some hope, in some form. Bargaining is in full play at that point in the disease process: if the patient can't be cured, if he or she cannot be granted more time, then of course we want them to be afforded comfort.  

About that question, the "what would you do" that every oncologist must get asked on a daily basis, I am here to tell you that no one can ever truly know what he or she would do in a given situation.  Even an oncologist who has dealt with countless sad situations can't accurately say how he would handle things if he or someone he loved were diagnosed with a terminal illness.  Each person, each situation, each relationship is different, and so none of us can predict with any degree of accuracy. (Click HERE to read the story of what happened in my dad's case, when he was so sick and not getting any better in the hospital, when I asked the oncologist what he would do if it were his father who was lying there in the bed, begging to be taken home.)

We can suppose, though, and we can ask for guidance, with the hope that given his experience the oncologist will have more knowledge about such matters than we do at that point.

That's what we wanted to happen with my dad; we expected the oncologist to bring up the subject of comfort care with us as an option when it started to look like the course of treatment that we had chosen might need to be reconsidered.  However, what actually occurred is that we guided the oncologist towards that thought in the process; he didn't guide us.  I have to say that it would have made a little more sense for the guy to avoid the subject of hospice if he had been involved in my dad's care for a long time and/or if he knew my dad on a personal level, but neither of those things were true.  In actuality, from my perspective, his not seeing the whole picture when we needed him to the most was because of one or two things - because he was too busy to be involved enough, or because he just wanted my dad to beat the odds so he could improve his own statistics.  

There it is.  I realize my perspective here is likely tainted with anger stemming from grief, but that's the honest truth of how I think things went in the end with the oncologist.  We were only presented with a minimum number of options in the beginning for Dad, and we weren't presented with any at the end, until we put forth the idea of hospice and comfort care.  I expected to be guided through that delicate process, and I'm not sure I'll ever recover from the shock that we weren't.

No Answers - Part 1: The Oncologist

There are some thoughts - the what-if's, why's and why not's,  the should have/could have/would have type of thoughts - that are probably common amongst people who are left behind after a person with a terminal illness dies.  

One thing in that realm that bothers me a lot is the way things were handled by the medical team involved with my dad's case - and that branches off into lots of other questions linked to the health care system in general.  I know there are not going to be answers to these questions, but I feel like I have to get them off my chest anyway.  So I'm going to start with the unresolved issues that relate to the oncologist...

As I've stated, I really liked the oncologist on Dad's case at first; like a lot of other people, I sometimes look for "signs" along the way to reassure myself that I am on the right track when I have to make a tough decision.  I thought we were doing the right thing by choosing that doctor to head up Dad's case, in part because I thought maybe it was a "sign" that he had gone to medical school where I live but he had done his undergrad work at the college that was my daughter's first pick.  (How freaking ridiculous is that?  That's like putting your life in someone's hands because they have the same favorite color as you!)  I got a "good vibe" from the guy the first time I met him; I felt like he was down-to-earth, unlike the asshole neurosurgeon who had been assigned to Dad's case, and I felt like he understood not just that we viewed my dad's case as a unique one but also why we did -  and I thought that meant that he would see it in the same way we did (translation: I thought he would do whatever it took to help my dad, just as I was ready to do).  

At our first appointment with the oncologist, I asked him directly if he would bring up the subject of hospice with us when it was time.  Like pretty much everyone who walks through the door of an oncologist's office for the first time, I had only limited knowledge about cancer in general, and obviously I didn't know much about brain cancer or the treatment for that specifically.  It's terrifying to be in a position to have to put such blind faith in someone you don't know at all, but you have to trust someone - and so that's what we did.  

I will never forget the scene in the awful little room off to the side of the hospital waiting room where, hours after Dad's surgery had been completed, the neurosurgeon imparted the most devastating news possible to my family and me about Dad's diagnosis and his prognosis.  As soon as he finished talking, I bombarded him with questions that I thought would influence what he had just said; as things were spinning completely out of control, I was desperate for control of something.  When I got to the end of my list of questions, I pledged out loud that we would fight the cancer tooth and nail, because that's what I wanted and that's what I thought dad did too.

Fourteen years ago, my sister gave birth to her first child, a daughter who is very healthy today but who was born early with some medical problems that necessitated an extended stay in the Neonatal ICU for the first few weeks of her life.  Various family members traveled to the city where she was hospitalized during those weeks, taking turns being there with her and with her parents.  One family member per night was allowed to stay in a family room near the NICU at the hospital.  One night, my dad volunteered to stay so my sister and her husband could get some sleep.  As I heard the story told later, at some point late that night my niece's condition became very critical, and a nurse dashed across the hall to ask my dad if heroic efforts should be used.  As my dad later told it, without hesitation he said, "We choose to fight." And with that, the medical team pulled out all the stops, saving my niece's life.  

Fast-forward a dozen years later, and it was my dad who was critically ill, and it was us who were being asked if heroic measures should be taken.  We all thought back to the story that had been told many times about Dad's proclamation on my niece's behalf when she was so sick, and we knew that Dad wanted to fight.  Never for a minute in the days after he was diagnosed did I consider that he might want to forego treatment, even knowing that the treatment would not be easy.  

And so at our first appointment with the oncologist, after he vowed that he would give us his honest assessment of when he thought we should move towards comfort care instead of moving along a restorative path, we discussed an aggressive course of action to treat GBM.  When we left there that day, I felt good about what we had talked about; I felt like we had a good set of facts and a plan of attack.

Looking back, though, I'm not sure the oncologist presented us with all the facts or all the options; I think he guided us towards the treatment that he was most interested in and/or most knowledgeable about when it came to brain cancer.  He said, when I asked him, that he was currently only treating one other patient with that same kind of cancer.  I didn't ask him how old that patient was, how much of the tumor the surgeon were able to remove, or anything else except what the treatment was that seemed to be working for the other guy, which of course turned out to be Avastin.  As soon as the oncologist said that, I wanted the same for Dad, the same medication, the same outcome.  I desperately wanted Dad to be the one that the oncologist could hold up as an example of a success story in the future.

This is just how new I was to that world, though: when the doctor explained what the "standard of treatment" was for Dad's type of cancer, what I really heard was "standard treatment, " and I got hung up on the word "standard."  In my mind, that meant "average," and, as the doctor talked and talked, I just kept thinking, "HELL NO, we don't want the 'standard' treatment - we want the EXCEPTIONAL one!"  

It wasn't until a few weeks later when we were at the Brain Tumor Clinic at Duke that I realized that the term was actually "standard of treatment" and that it referred to the treatment that was generally accepted and used for a specific diagnosis.  

Since then, I've become familiar with stories about people who have been diagnosed with GBM and who have fared well going the route of the standard of treatment, which typically has very few side effects.  I've heard stories about other people with the same diagnosis who have chosen different types of treatments, too.  But I didn't know any of that back then.

The only choices we were given that day in the oncologist's office were the standard of treatment (an oral chemo called Temodar + radiation) or the cutting-edge version (Temodar + radiation AND Avastin, which works by cutting off the blood supply to the tumor site) that was going on as part of a clinical trial.  That was it.  As I've learned since then, there are other treatment options available for GBM, and I think those alternatives at least deserved a conversation.  Unlike some other cancers that are diagnosed much more often, only modest advancements in the treatment of GBM have been made over the last 30 years, and so far a successful "cocktail" of chemo or other treatment regiments that positively affect survival rates have not been identified.  As a result, there isn't a cookie-cutter approach to treating the disease, which means there are possible variances in treatment strategies.

Maybe the oncologist thought we had time to try alternate treatments if necessary in the future, if the first protocol wasn't successful or if it was and then a relapse occurred (which almost always is the case with GBM).  Maybe he felt that things like vaccines and other immuno-therapeutic treatments wouldn't be as effective for Dad for some reason.  I am just left to wonder why other possible treatment options weren't discussed at all, one of many questions for which I know there is no answer.

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