Surviving Terminal Cancer

One of the many things that has surprised and frustrated me since my family learned about my dad's diagnosis of brain cancer is the lack of awareness and knowledge possessed by the medical world as a whole about the specifics of Glioblastoma Multiforme, or GBM.  I understand that the average person probably hasn't ever heard of GBM. Because it's rare, it's just not something that most people have ever had to know about.  Unlike more common types of cancer like breast cancer, lung cancer, and prostate cancer, most people probably don't know someone who has had GBM (lucky for them).  I find it appalling, though, that the medical community, outside of oncologists and neurosurgeons, by and large has never even heard of the diagnosis.  

Last fall, I went to a family doctor to get established as a new patient in the practice.  When the physician came into the room, she introduced herself and then sat down on the rolling stool.  As she asked me questions about my medical history and about my family's medical history, she typed in my answers on a laptop computer.  Eventually we came to the part where she asked about my parents' health, and I told her that my dad had died of GBM.  "How old was he?" she asked, and I gave her the same information that I have given many times about how he was only 67 and was active and seemed to be the picture of health.  In fact, I told her, he was training for an Ironman triathlon.  "Did he swim in a lake to train for that?" she asked, which in all honestly I thought was a little off-topic.  Yes, I told her.  "Oh," she said, "is that where he got the GBM?"  

Her question disoriented me, and it took me a minute to respond. "No," I said, trying really hard to control the anger I felt creeping into my body. "The cause of brain cancer is unknown." She blinked a few times and then said, "Oh!  I'm sorry - I thought GBM was a parasite," she said.

I liked this doctor; she seemed thorough and smart and kind, but the exchange brought to my attention yet again how much of a gap there is in what medical professionals are being taught about this disease.  

That's one reason I am so glad whenever I see GBM featured in the media as it will be in the soon-to-be-released film "Surviving Terminal Cancer" aimed at promoting patient advocacy and public education about cancer and research. 

The film features the story of a man who has lived for 19 years after he was diagnosed with GBM, a disease that has a median survival rate of 14.6 months with the accepted protocol treatment:

This film charts the remarkable story of Ben Williams, professor emeritus of experimental psychology at University of California, San Diego. Diagnosed in 1995 with the most lethal cancer known to medicine, a primary brain tumour called glioblastoma multiforme, he was given just a few months to live. But a natural born maverick, and rigorous scientist, Ben decided he would not go down without a fight. Nineteen years later his story is an inspiration to patients the world over, whilst his case is dismissed by the medical community as just one of a handful of statistical outliers.

"Why are we sticking with a treatment protocol that obviously doesn't work?" the filmmakers ask, as anyone who learns about Ben's story will ask.  The film looks at several less well-known treatment options for cancers like GBM, including some off-brand uses of certain medications and vaccines, like the modified polio vaccine that is currently being used at Preston Robert Tisch Brain Tumor Center at Duke University (where we took my dad for treatment, although he got a different type of treatment, not a vaccine). 

Another reason that I am so interested in this film is that I personally interacted with Ben Williams through email correspondence during the time that my dad was sick.  I connected with Ben when I came across his story on a website called Clinical Trials and Noteworthy Treatments for Brain Tumors during one of the many late-night Internet searches I was desperately conducting.  I sent him a message through the website with a brief description of my dad's medical information, closing by saying "We want to be as thorough as possible in looking at treatment options for both now and in the future.  Your story is among the few things keeping us going as we begin our battle with this terrible disease.  I would love to get your advice if possible."

He emailed me in response later that same day:

With that, he and I entered into a fast-paced exchange of emails, with the communication mostly consisting of me asking questions and him providing more in-depth advice and information about what the data in the research had shown about various treatment regiments, including the use of several types of chemotherapy other than what my dad was taking, off-label use of medications like calcium channel blockers, and various vitamin and herbal supplements.  He had a remarkable way of explaining very complex scientific and medical issues, like gene segments and pharmacological cross-tolerance; I felt like I had access to someone who knew something that might possibly save my dad's life.  I read and reread every email he sent and made long lists of questions which I later posed to Dad's oncologist.  Instead of thinking "Why him? How did he get this horrible disease when he seemed to have everything going in his favor?" I began to catch myself thinking, "Why not him?  Why can't he be the one to beat the odds like Ben has been?"  I believed that we would find a treatment that would work for him, and I believed that he would be ok.

But, as it turned out, I was wrong. Dad didn't get better; in fact, he was getting worse by the day at that point.  Four days after I got the last email from Ben, which included specifics about what he felt we should ask the oncologist to consider, Dad was taken again by ambulance to the hospital, and, although we did not know it at the time, we were propelled into what ended up being the beginning of the end.

The Right to Die

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

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

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

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

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

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

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

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

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

Why Brain Cancer is So Lethal

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

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

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

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

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

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

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

Without a Sound

 When a glass or a ceramic plate is dropped, it makes a loud noise as it crashes on the ground.  When a window shatters, a figurine falls off a shelf, or a picture falls off the wall, it makes a noise.  Why not, then, a heart when it breaks?  It doesn’t seem right that something so devastating, so life changing, can occur without a sound.   

A lot of people have asked me over the past few days what my thoughts are about what happened with Brittany Maynard, the 29 year-old woman who is being referred to as the face of “Death with Dignity” after she chose to hasten the end of her life after she was diagnosed with Glioblastoma Multiforme (GBM).

GBM is something about which I, unfortunately, have personal experience and knowledge, as it is same diagnosis that my dad had.  I am not a physician, but I will do my best to provide accurate and relevant information about this diagnosis below as I think it’s important to know the facts about this diagnosis before jumping into the arena of discussion about Brittany’s case:

GBM is a primary brain cancer, which means it originates in the cells of the brain, as opposed to a secondary brain cancer, which begins elsewhere in the body and then spreads – or metastasizes - to the brain.  Of the many different kinds of primary brain cancers, all of which are rare, GBM is the most common … and the most aggressive in adult humans.   It is considered to be incurable, and, in the vast majority of cases diagnosed in the U.S., survival after diagnosis is less than two years.  The average life expectancy for an adult diagnosed with GBM is 14 months, and, as my family discovered when my dad died only ten weeks after his diagnosis, sometimes even that is too much to hope for. 

When a mass in the brain is discovered by a scan and a biopsy of the tumor is taken and analyzed in the lab, there are two things the pathologist looks at: 

• the type of brain cell from which the tissue came, which gives the tumor a name like GBM
• the speed at which the cells are dividing, which results in an assignment of a grade for the tumor, such as Grade III [3] or Grade IV [4].  In general, Grade I means that the tumor tissue is “low grade,” or very slow-growing, whereas Grade IV indicates that the tumor is growing at a very aggressive rate. 

To make things even more confusing for most of us, although Glioblastoma Multiforme is a primary type of cancer, there are two types of glioblastomas, the first of which is called “Primary, or de novo, GBM.”  This kind is the most common form of glioblastoma and is highly aggressive from the moment of discovery.  The second type of GBM (misleadingly also classified as a primary brain cancer) is called Secondary GBM; this kind begins as a lower grade tumor and then as it develops gets "upgraded" eventually into a GBM. Secondary GBM tumors have a longer, relatively slower growth pattern – but they are still considered to be very aggressive in that they are very difficult to treat.  This type of brain cancer, which accounts for about 10% of all GBM’s, tends to be found in people 45 and younger.

In the words of the neurosurgeon who handed down the news of the cancer to my family: “All GBM’s are Grade IV.”

                 

Some reports in the media about Brittany Maynard’s case seem to be confusing two different parts of the pathology, though: Tumor grade is not the same as the stage of a cancer. Cancer stage refers to the size and/or extent of the original tumor and whether or not cancer cells have spread to other sites. Cancer stage is based on factors such as the location of the tumor at the time of diagnosis, the size of the tumor, and the number of tumors (or "tendrils") present. There are even more scales of different types used for determining the grade and/or stage of certain types of cancers like pancreatic: suffice to say that there is so much information about cancer in general that it's not difficult to see why there is a lack of awareness - and some confusion - amongst the media and the general public.  In fact, the same goes for the medical community: as far as I know, except for the oncologist and a few nurses on the oncology floor of the hospital ... and maybe the neurosurgeon, the majority of the medical professionals that treated my dad knew little to nothing about GBM. Unfortunately, I don't think this was atypical; not long ago I went to a doctor as a new patient for a check-up and, when she asked me about my family history, of course I told her about my dad's diagnosis of GBM.  "Was he sick for a long time?" she asked me, and when I told her no, that he was in great shape, in fact he was in training for a triathlon, she responded, "Oh, so he probably caught the parasite from swimming in a lake?"  Um, no, GBM is not a parasite, I told her.  But I digress ...

GBM tumors can occur in any area of the brain but are most often found in the frontal and temporal lobes [My dad’s tumor was in his right parietal/temporal lobes].  One characteristic of GBM is that these tumors tend to be infiltrative, meaning they spread into other parts of the brain (usually very quickly).  I remember the neurosurgeon explaining to us that GBM tumors, unlike most tumors that have smooth edges, have irregular borders – and then for effect he held up his left arm with his elbow at a 90 degree angle so that his left hand was dangling down in the air, and then he used his right hand to point to the fingers of his left which he said were very similar to the multiple “tendrils of tumor” in my dad’s brain, “finger-like projections, if you will,” he said. 

As the neurosurgeon also informed us on the day of my dad's diagnosis, although GBM can spread throughout the central nervous system (the brain and the spinal cord), it almost never spreads to other areas of the body.  

What the doctor didn’t tell us – what no medical professional did – but what I discovered through spending a lot of time researching on my own is that there are certain “prognostic indicators” with GBM, essentially things that speed up the ticking time bomb, shortening the already shortened life even faster: there are a few that did not apply to my dad like pre-existing health conditions and lack of family support – and at least one that did, which was the surgical removal of more than 95% of the tumor [called "the extent of tumor residual"].  One other factor that affects prognosis, one which we never got the chance to find out about in my dad’s case, is a genetic mutation that involves a gene called the MGMT gene.  People with GBM who have had their MGMT gene shut off by a process called methylation have prolonged survival rates. Unfortunately, as in my dad’s case, testing for this gene is not automatically done at all medical centers, and so many people (as occurred in our case) cannot use this as a piece of information for treatment planning or the end-of-life decision-making process.

It is important to be aware that not all GBM’s have the same biologic abnormalities, which is likely the reason that different patients respond differently to the same treatment. And so, even with the amount of information in the media about Brittany's medical condition, there are some things to which the general public is not privy, and some of those things probably affected her prognosis.

Although this information may seem boring or irrelevant to most people, I feel it is important to have access to it when considering Brittany Maynard’s case.  The other thing that I think it’s important to know is that, unless you have been intimately involved in caring for someone with GBM, there will always be certain things that you don’t know - things that may make the choices of Brittany and others look different to you.  As I’ve said before, GBM is a different beast from other cancers, even when those cancers have spread to the brain. 

In the next post, I will try to express my thoughts about some of things that have been discussed about Brittany’s case. 

What I Have Come To Believe - Part 3: Fighting Cliches'

A follow-up to "What I Have Come to Believe - Part 1" and "Part 2: A Quest for Patterns and Control":

Fighting Cliches'

The words we use to talk about cancer can influence how we think about the disease - and how we think about the people who have been touched by it.  Those who survive are often called "winners" and are said to be "victorious." Those who have not survived their cancer are called "angels" and are said to be "in a better place."  Whenever I hear those descriptive terms used in that context, though, it makes me wonder if it's being implied that the opposite is true when the story has had a different ending, never a good thing in my book for a process like being diagnosed and treated for cancer, the outcome of which is frequently tied to many different variables that are often very much out of one's control.  

People talk about fighting cancer ... but the term "fighting" implies that there are winners and losers, just as surrendering sounds like giving up.   Certainly it isn't being implied that those unlucky enough to die after being diagnosed with a more aggressive type of cancer or an unfortunate side-effect like infection are losers who have given up.  

My dad was tough; he challenged himself on a daily basis in the physical realm though countless miles of running and biking on the road and grueling workouts, and he worked his whole life to better himself in any way that he could.  At no point in his life was he a loser or a quitter, and he sure as hell never surrendered, even though he was not able to survive the cancer that took his life.  From Day One of his diagnosis, he said he was ready to go back to work, and he continued to say that up until a few days before he died.  That is the opposite of surrendering, if you ask me.  

Advice that I hear being given out a lot in reference to a person who is dealing with serious illness or another extreme trial in life is "Stay strong."  I'm not even sure what that means; don't cry ... don't refuse treatment ... don't die???  And the phrase that is used a lot with intent to encourage a person with cancer - "Never, Ever Give Up", or "NEGU," as it is sometimes abbreviated - makes me wonder if those using that slogan have considered that doing so implies giving up has occurred when one cannot survive despite everyone's best efforts.  When treatment has failed and the disease is taking over, the pressure from hearing cliches like "NEGU" must be almost as unbearable as the disease can be.

Instead of "Never, Ever Give Up," what cancer and grief have taught me is to "Never say never."  More than anything else in my life, the experiences I have had since my dad got sick have shown me that there is simply no way to understand some things without having gone through them.  Lots of things that I thought I knew have fallen by the wayside over the past 2.5 years; now I either have knowledge of a different set of facts - or a different perspective - or just the understanding that there are many things I don't know at this point.

Maybe it's ok to use the term fighting when we're talking about cancer, as long as there is an awareness of the fact that sometimes FIGHTING can be doing something other than getting an aggressive treatment. Treatment and all the things that go along with it are an individual decision, one that can be made exponentially harder because of the time factor, plus the shock, entering into end-stage decisions. I think a lot of people with aggressive cancers opt to try an aggressive treatment as they attempt to figure out what their goals are (their Revised Bucket Lists) - it's like that is the Default when we are faced with the initial decision, and then, if that proves unsuccessful or unsatisfactory, they go to a more traditional treatment or to less harsh remedies or even no treatment at all.  Fighting can be seen as doing any number of things - or sometimes by doing nothing at all, depending on the situation and on one's perspective.

With an aggressive cancer like GBM, the survival statistics are horrible to look at, but people tend to hang onto the knowledge that nothing is for sure; believing that a loved one will beat the odds is not unreasonable, and in many cases Hope is one of the few things that can be controlled. Those dealing with aggressive cancer may consider treatments that have less severe side effects than chemo; they may have an "if-then" list or just an idea of "if" this happens, "then" another option will be considered or pursued.  I know all too well that when the treatment options and their pros and cons have all been laid out, what to do can be a tough, tough, thing to hammer out, but here's the bottom line: sometimes saving a life is not the same thing as extending it. 

From "http://ozbraintumour.info/"

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