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.

Well Worth the Effort

Many mornings when I get up before the sun rises to see my daughter off to high school it reminds me of how I used to drag myself out of bed in the early morning on school days when I was her age.  I got up then, though, not because my school started really early like hers does, but because I had to get in a run before school when I was in the midst of a training season for track or cross-country. 

Early morning running with my dad

I’ve never been a morning person.  On most days, I get up because I have to, not because I want to at that particular time, and, truth be told, I hated getting up for those early morning runs.  It was always dark, and the temperature always seemed to be cooler than I preferred, even in the late spring or early fall months.  I was always a little stiff and often so tired at that time of day that I could hardly keep my eyes open as I ran down the street, guided by the streetlights, counting freshly thrown rolled-up newspapers in the driveways to pass the time as I went along.  Many afternoons or evenings when I ran, often for the second time in the same day, I did it because I loved it, but, on those mornings, I did it because my dad expected me to put in the extra effort.  It was part of the plan he had written out for me each week, the training program that he said would pay off at the next race, which, for me, was always just around the corner.  I loved the racing part, too, but not those morning runs – those I just struggled through.

I remember on so many occasions looking up as I crossed the finish line at the end of a race so that I could see the look on my dad’s face.  I judged my performance in each event by the look I saw in my dad’s eyes at the end of the race; in an instant, I could tell what he was thinking – and many times it was this: it was well worth the effort. 

I knew it then, and I know it even more now: there is such privilege that comes with knowing someone well enough to know what he or she is thinking, a secret code of which it is an honor to have an understanding.  I often think back to the few episodes of perhaps oddly placed confidence that I had when I was helping my dad during the weeks of his illness. One instance in particular occurred on the day my dad went from the hospital to a rehab facility across town. The hospital staff wanted to have him transported by ambulance, but I felt it was essential to his mental state not to have to ride in another ambulance at that juncture in his recovery. Somehow, from out of necessity I guess, I found the confidence to tell the nurses that I was certain I could safely help him get from a wheelchair to the car at the hospital and then from the car to the wheelchair and inside the rehab facility.  "I have no doubt I can keep him safe," I remember saying to a couple of nurses in the hallway outside his hospital room.  I felt like they were looking at me doubtfully, but they said ok and that was that.  I am trained in assisting with patient transfers like that, but I work with children, not adults.  I felt sure though; I knew I would do anything to help my dad, and I was confident that together our effort would pay off.

Doing whatever it takes, with both of us wearing the same expression of determination

There were a few more things that happened like that while he was sick, with my certainty coming from almost out of the blue, each time tied to the fact that I was completely determined to do whatever it took to help take care of my dad.  The most striking bout of unexplainable conviction that I experienced during his illness, though, was when he asked me how we would know what he wanted if he lost the ability to talk.

“I’ll just know,” I told him, somehow without missing a beat after he threw that question out into the room.  I cannot explain the sense of sureness I felt in the moment; looking back, I realize that it would have been much more reasonable for me to feel a sense of terror and uncertainty in the moment.  We were in the den of my parents’ house, the day after we’d brought him home from the hospital for the last time.  It was New Year’s Day, and my dad had not rebounded the way I’d thought he would once he was on his home turf.  He was still trying to eat to get his strength back, and he had been asking for small servings of food since he’d woken up that morning: “maybe a piece of bacon,” “some fruity dessert,” (which is what he called the cut-up pieces of fruit in a plastic bowl purchased from the produce section at the grocery store), and, the request always accompanied by a gesture of the quiet snapping of his fingers, “just a little piece of chocolate.” He’d asked for and had eaten a little of each, along with a sip of his favorite beer, Foster’s, which he drank through a straw while he sat up against the cranked-up mattress of the hospital bed in the middle of the den.  His voice was hoarse and breathy, and it seemed to be getting weaker as time went on despite the efforts of my dad to eat and take medicine that was supposed to make him feel better.

His concern about losing his ability to talk was legitimate, and I honestly don’t know the source of the confidence I heard in my own voice when I answered his question that day in the second-to-last verbal exchange I ever had with him.  I guess I would have to say it was an accolade of sorts for the extra time the rest of my family and I had been lucky enough to have with him over the weeks of his illness as we battled along with him.  I knew that if necessary, I would look at my dad and just know what he was thinking, just like those times many years ago when I crossed the finish line of a race. And again, it was well worth the effort.

The Shift

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

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

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

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

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

Being Present

One thing that I think I got better at during my dad’s illness was being present.  When I think back to when my children were very young and there was a lot of just being there to be done, I don’t see myself as having been good at it; so often when I should have been completely focused on the joy of motherhood, I remember feeling like I needed be taking care of something else – work, household duties, or whatever – instead of basking in the good fortune that had come to me because I was able to spend time with them.  I don’t think I was in the moment often enough back then, and, to be honest, it’s something with which I’ve often found myself struggling in many contexts over the years.

But when I was told of Dad’s diagnosis, even though I didn’t (couldn’t) believe the prognosis, I realized the preciousness of spending time with him, just in case.  When my family was told the grim statistics that were so caustically presented to us, immediately we were all reeling over the extreme vulnerability of the man we loved so much, and maybe even that of life in general.  From the time Dad was initially taken to the hospital by ambulance, in some distinct ways he seemed so different from the man he really was, but in other ways he was, well, just himself.  What Cancer didn’t take from him was his sense of humor, his kindness, his tenacity, his love for his family and friends, and maybe even his belief that things would turn out all right.

Throughout his battle with Cancer, at least some confusion was there for Dad, at times a good bit of it, but his brilliance was still there too.  As much as we wanted to protect him and to have as much time as possible with him, he worked even harder to protect us and to have as much time as possible with us, and I will always remember and respect the grand effort I am certain that took on his part.  

Over the many years that Dad was in peak physical condition, especially when he was marathon-ready, he was thin-statured.  His son-in-laws and some of his friends used to jokingly call him Skeletor and say that he looked like a POW.   (Dad took that as a compliment: “Less weight to carry on my run!” he said enthusiastically.)  But at the end of his life, Cancer actually made him a Prisoner of War – literally overnight, he couldn’t go where he wanted to go or do what he wanted to do.  Hell, he couldn’t even be left alone for one minute for fear that his “I can do it myself” attitude and the impulsiveness and disregard for safety that were handed down by the disease would land him in the floor.  Obviously, nothing and no one had been able to keep him safe from Cancer, and, the way we saw it, we’d be damned if we weren’t going to try our absolute best to keep him safe from everything else.

And that’s where being present became necessary, right from Day 1 of his illness.  That’s also were being present became a privilege for those of us who loved him so much; it was a crash course for me in priorities and in time management.  At first, as I sat with Dad and even while I helped him with the many things with which he needed help, my mind raced ahead and then behind and then ahead again.  If not for the fatigue that became so extreme and so pervasive for my mom, my sisters, and me during the ten weeks we cared for Dad, we would surely have not been able to fall asleep at all for the whirling and racing our minds were doing.  As it was, though, by the time Dad entered rehab just a few days after his brain surgery, being present was all I could do, and, as well, it was all I wanted to do.

Along the way, Dad seemed like he still had plenty of fight left in him, until he didn’t.  The world, in Dad’s eyes before Cancer, was a great place, full of fun things to do and people to interact with, full of adventure and dreams and things to look forward to.  We watched as Cancer and the four walls of the hospital, the rehab center, his house, and then the hospital again changed that over time, though, and as the light and the happiness started to leave his eyes.

People going through the kind of traumatic experience that my family was while Dad was sick are not always the easiest people with whom to interact, we knew that, and we did what we could to follow Dad’s lead and to be appreciative and patient.  Some of the nurses and techs we clicked with, and some of them we tolerated while we counted down the minutes until their shifts were over.  We weren’t ourselves; we were busy being present and taking care of Dad with every bit of intensity that we could muster, 24 hours a day.  Fear and anger and helplessness and sorrow and fatigue changed who we were; I think most of the people we knew were aware of that and realized that our world had been turned upside down and we were just muddling through.  

In the months since Dad went on ahead, I think I have lost a lot of the ability I had gained in being present.  My mind so often flashes back to scenes of Dad struggling or the faces of the people who didn’t help us and didn’t seem to care that we were failing in our efforts to save him.  It’s like a remote control gone haywire with a life of its own that's controlling my thoughts sometimes when I should be controlling them, so that I can pay attention and be present, especially when I am lucky enough to have time to spend with my family and friends; I cannot control those flashes or the distractibility and the emotions that come with them.  I am very appreciative of the times when I can focus, whether it is to concentrate on doing something that needs to be done or to take a breath and feel some positive emotions.  Oddly, sometimes when I catch myself feeling happy, I’m happy that I can be happy in that moment, but, as in a sky without a cloud in sight, it also makes me anxious and sad to know that there is a black cloud that out there that will inevitably come near again at some point in the future.

Being present more consistently has gone back on the list of goals that I have for myself, and I hope to achieve it one day soon so that I can more often bask in the good that is all around me, despite the fact that one of the best people in my life is no longer able to be present to enjoy it with me.

Part 32 – Falling

Continued from Part 31

Falls separate people in a very literal way: the careless from the careful, the clumsy from the coordinated, the weak from the strong, the unlucky from the lucky, and - as in our case - the unhealthy from the healthy.  After a fall, one's first instinct is to reassure everyone, including himself, that it was "no big deal," that he is "just fine."  It is natural for the one who has fallen to want to “shake it off” and forge ahead as if it didn’t happen at all.

This is an exceptionally hard part of my family’s story to recount because it involves two falls for my dad that marked a turning point for him and for us, watershed moments when Dad stopped being embarrassed about needing help.  After the past couple of months of having given it his all to pretend that he didn't need assistance, he was completely drained, and it was the beginning of a struggle from which we just couldn’t disengage. It was heart wrenching and very sobering to see Dad’s acceptance of help after these falls and to see that he was starting to understand just how sick he was.

No one involved in what happened with Dad over the next couple of weeks could give any reassurance that things were ok or any explanation as to why he had gotten so much worse or why he couldn’t recover.  We were on our way to the front lines of the battlefield, and we were soon to learn that we had only thought we knew what difficulty and devastation were.

On the Monday before Dad was scheduled for an MRI on Tuesday and Round 3 of chemo and Avastin on Wednesday, my sister stayed at our parents’ house with Dad, and Mom went out for a break with her two sisters.  In a few hours’ time, Dad got up and sat for awhile in his recliner in the den and ate a few bites of food at my sister’s insistence, and then he said that he needed to get up to go back to the bathroom.  As we had been doing over the past several weeks to help Dad with his balance whenever he walked, my sister held onto the waistband of his pants from behind him to try to steady him.  As she recounted later, he seemed more unstable and weaker physically than ever before.

A few steps into the hallway, Dad lost his footing and fell to the ground just behind the couch.  My sister cushioned his fall with her body, turning the fall more into more of a controlled collapse, but once Dad was down, he couldn’t get up.  He tried, she tried, and they tried together to figure something out, but nothing worked.  In the midst of their efforts, the doorbell rang, and my sister could see through the windows by the front door that it was Dad’s swim coach Ashley.  She motioned her to come in, and together the two of them were eventually able to get Dad up using the back of the couch for leverage.  After they helped him back into his recliner, he strangely acted like nothing had happened, even though he and my sister both had been in tears and had spent at least half an hour feeling utterly helpless on the floor before Ashley had arrived.  Dad had great admiration for his swim coach, and my sister said later that she thinks the fact that Ashley was there was the only reason Dad was able to muster enough strength, courage, and perseverance to get up and act like he was ok.  

After Ashley left, the Occupational Therapist came for a therapy session that had been scheduled the day before.  My sister told the OT what had happened, but he really didn't seem to understand and/or care.  He had Dad do some hand exercises from the recliner in an extremely short therapy session in which Dad was very obviously totally disinterested and disengaged.  My sister asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed.  The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak.  They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom.  Once they got him back into the bed, Dad immediately fell into a very deep sleep.  It was so undisturbed and so very uncharacteristic for Dad at the time that while he slept over the next few hours my sister sat in the bedroom on the floor and watched his chest rise and fall the whole time.  At one point, she took a video of Dad’s breathing pattern on her cell phone and then called me to tell me that something just seemed really, really wrong.  (By the way, the therapist hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.)

I had planned to arrive at my parents’ house the next morning, and, since Dad wasn’t hurt physically, we decided to just let him rest until then so that the three of us could get him to the appointments as scheduled over the next couple of days.  In full Bargaining/Denial mode, I told my sister and myself that Dad had just worn himself out with all of the activity over the past couple of days and that he just needed some extra rest.

That night, as was the routine during that time, Mom took the first shift with Dad, talking to him about the plan for the next day which included the MRI, the visit with the neuropsychologist, and the candlelight church service.  Dad was still very anxious about the MRI but seemed to accept that we would be right there with him when the results were read the following day and that we just needed to get through it and then go from there.  

Around 3:00 a.m., Dad informed Mom that he needed to get up to go to the bathroom.  She turned on the light and then helped him get up with the walker and into the bathroom adjoining their bedroom.  Dad had been soloing in the little “toilet stall” room and did the same that night, but after going to the bathroom he lost his balance.  He fell against the wall and slid to the ground.  Mom yelled for my sister, who rushed in to help.  It was a repeat of the afternoon fall, except that this time even two people wasn’t enough to support Dad.  They tried different maneuvers and various strategies but nothing worked.  Finally, in desperation, they called 9-1-1.

Thinking that Dad would resist having other people come in to help, neither my sister nor Mom wanted to tell Dad that they had made the call.  The ambulance arrived in a matter of minutes, and, when Dad saw the paramedics, a look of sheer relief washed over his face.  Two strong men carefully picked Dad up and put him back onto his bed.  They checked him over and declared that he somehow didn’t have any breaks or bruises, but after some discussion it was decided that they should transport him to the hospital due to concerns about the decline in his physical status that seemed to indicate a worsening in his medical condition. 

Mom rode with Dad in the ambulance; Dad’s anxiety actually seemed to be mitigated by the decision to go to the Emergency Room.  My sister called me and told me to meet them at the hospital instead of at my parents’ house as planned, I called our other sister, and we each began to make our way back to the hospital.

Up next ... Part 33 - Hospitalization 2.0

The Way We Were

Here we are one year from the day that Dad couldn’t finish his run*, when he was taken by ambulance to the hospital and the mass was discovered in his head, when he stopped breathing for several minutes and had to be resuscitated in the middle of an MRI scan.  When his life – and the lives of everyone who knew him – changed forever. 

I really don’t want to mark this date on my calendar.  Hell, I don’t want it even to have happened, and sometimes I still don’t believe that it did. 

Here’s one thing I’ve been thinking about lately as I go back in my head through the story of what happened a year ago:  Dad regularly used to half-jokingly say that he hoped he would “go out running.”  What better way to go, he pointed out, than when you're doing something you love?  Certainly he didn’t want to officially Grow Old; he would not have done well sitting in a rocking chair on the porch all day.  And who among us wants to stick around so long that we lose our independence and suffer physically and emotionally?  No one I know, most especially Dad.  He hated inefficiency and down-time. 

 In many ways, for Dad it would have been so much easier to go to the light when he stopped breathing in that tube a year ago.
I believe he had the chance to go on ahead then and that he made a conscious decision to come back to us, not for his sake but for ours.  I think a person who wasn’t as strong or as determined or who didn’t have as much love and devotion for their family as Dad did would have made a different choice in that situation, and I am more grateful to him than I can ever express for the choice that he made on that terrible day last October.


Dad gave up his chance to go on ahead when he could have that first time; he devoted the end of his life to being with us a little longer.  I don't think everyone has that chance - or the courage to take it when they do - but he did.  He put all of his effort and strength into it, for us.  And, as much as I long for the way we were, I am so incredibly thankful that he held on for as long as he possibly could.

*To clarify: October 23, 2010, was the day that Dad was taken to the hospital and had the mass detected.  I keep picturing myself on the airplane on the way back from a conference at the time he was in the ambulance, late in the afternoon on that Saturday, and that's what inspired the timing of this post on October 22, 2011.