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 Fuel of Hope

I recently came across a video clip of an interview with Dr. Henry Friedman, the Head Honcho at the Preston Robert Tisch Brain Tumor Center at Duke University.  Watching it brought back memories of the day about a month after my dad was diagnosed, the afternoon on which this same man called me on my cell phone to say that the team at Duke had received Dad's paperwork and had approved him to come in to their clinic for a consultation.

Knowing the outcome as I do now, it feels odd to think back on the day when that call came in with what felt like the best news of my life.  I vividly remember standing in front of my desk at work, hearing my cell phone ringing, and then seeing the North Carolina area code come through on the screen of my phone.  Like a drowning person grasping for a life preserver, I hit the button to accept the phone call and said, “Hello?”  A few of my coworkers, each of whom knew that I had been anxiously waiting on that call, stopped what they were doing and stood motionless, watching my face as I listened as Dr. Friedman responded to my basic greeting by launching into a rapid-fire monologue about how we needed to get my dad in to see his team at the clinic at Duke.  I felt like it was the voice of God speaking to me; I felt like hearing that Dad had been accepted into what we’d been told was the best program for his type of brain cancer in the world was a sign that Dad was going to be ok.  The stream of words coming through the phone line sounded like a pep rally of the highest importance: “We have seen great success with the treatment for GBM that we’ve been doing in this clinical trial,” he said, and for the first time since Dad’s diagnosis I felt Hope. Friedman offered me an appointment for my dad and of course I gratefully accepted, with tears streaming down my face as I stood in the middle of my office.  I thanked him and then we said goodbye; I hung up the phone and turned around to face my coworkers, who broke out into a round of applause.  I felt like I had won the lottery.

Watching this clip, listening to the same voice talk about the horror of brain cancer coupled with the renegade Hope of his treatment plan, I feel such a mixture of emotions.  Although I spent a lot of time after my dad’s death feeling very angry that the Hope that we’d been given hadn’t panned out, I am grateful now that Dad and the rest of us were able to have that Hope for a period of time, because the thing from the video clip with which I don’t agree is the idea that the worst thing one can hear is the word Cancer.  I know now, as do others who have gone through similar situations, that the hardest thing is when the doctors don’t know what to do, when the treatments don’t work, when the Hope has to change to things like comfort and peace - and when even those things seem like a far-reach.  

We didn't actually meet with Dr. Friedman once we got to Duke; we met with some of the neuro-oncologists and other staff members there that he had trained and talked to them about his latest protocol for treatment of GBM.  We felt the support in the fight against the insurance companies as discussed in this video, and we appreciated that and the other resources we were given while we were there.  

Of course I wish that my dad could have had a "good outcome." Of course I wish that my dad could have been one of the people in this video talking about long-term survival.  Of course I wish that he could have been one of Dr. Friedman's examples of how things could go right.  But, failing that, from this vantage point I am grateful for the Hope that we were handed by this guy and his team and for the fuel that it gave us, if only for a short while.

From This Vantage Point

During the ten weeks that my dad was sick, whenever I heard someone use the phrase "at least" in reference to my dad's illness, my gut burned with fury.  I didn't want any at-leasts, or rather I didn't want to have to have any.  I wanted my family to go back to the way it was, and, as I tearfully texted my husband late in the night after we brought Dad home from the Brain Tumor Clinic at Duke, I wanted my dad back.  It seems selfish and childish to me now, but I was in a state of shock and disbelief that that changes that had occurred in such a relatively short period of time had happened.  The doctors at Duke had promised us that the treatment Dad had gotten just after his appointment there was like "magic;" they told us that within 24 hours of getting the medicine we would notice an improvement.  Instead, though, probably due to the toll the stress of the trip had taken on him, he seemed worse.  To me, there certainly didn't seem to be any at-leasts in the picture at the time.

Dad, competing in a half-Ironman triathlon just weeks before his diagnosis

The at-leasts poured in from seemingly everywhere while he was sick and for awhile after he went on ahead; I realized even on my worst days of rage and despair that everyone who said those words did so in an effort to help: "at least he had his family around him the whole time he was sick;" "at least he had good insurance;" "at least you got to spend those extra weeks with him;" and then, the hardest to swallow, "at least you were with him when he died."  We even got a few at-leasts that weren't true ("at least he didn't suffer" being the most blaring untruth).  People were just trying to help, I told myself then and in the months that followed.  I knew it was true; I just hated that I was suddenly on the receiving end of such a phrase. Just having part of what I had or should have had didn't seem good enough.

The flag at half-mast at the cemetery on the day of dad's burial

Over the past six months or so, though, I've been thinking more about those at-leasts, and I've started to see them a little bit differently.  Don't get me wrong: I still long for the whole; it's just that I'm starting to see the value in the in between.

I think the change has come from my reading about the struggles of others - their challenges, illnesses, and grief mostly - and seeing that the people who seem to come out ok (that is, those who don't end up with a completely bitter outlook on life, one that seems so damn disrespectful to the people in their lives including, in the stories of grief, the person for whom they are grieving) are the ones who lean at least a little bit into the at-leasts.  

My dad wasn't a big believer in thinking about Worst Case Scenario; although he like to plan ahead, he frequently said that he thought worrying was a waste of time.  I'm actually not sure what he thought about at-leasts, if he thought about them at all.  I know he was a positive thinker, though, and I can see now that at-leasts fit into to that way of thinking, which is further evidence that it's not a bad idea for me to reconsider my view on that point of reference.

From this vantage point on the road of grief, I can see the value of at-leasts.  Saying "at least" in reference to one's own troubles is a way of keeping perspective; it's a way of reminding ourselves that, while we are powerless to change certain situations and to stop certain things from going wrong, we have a choice in how we view things, even (and maybe especially) in the midst of tragedy and hardship.

And so I have changed my opinion on at-leasts: I believe in the goodness of at-leasts and of positive attitudes; I believe that each of us has the power to take tough circumstances and bad breaks and find the good in those situations.  And that, more than anything, is what gets me through the day now.

The Smell of Colors

I once worked with a child who said that he could smell colors; I was intrigued by his claim and asked him to tell me more about it – how he’d first noticed it (“I just did,” he said) and what each color smelled like to him (interestingly, I thought, white smelled like flowers, whereas I thought it would smell like the “fresh cotton” scent of an air freshener).  Some of the other people who worked with this child seemed to think his behavior was bizarre, but I thought it was fascinating.

Obviously I can’t tell other people how a certain color smells, but what I can do is to describe what certain emotions sound like. 

On the first night after we’d gotten to Durham when we took my dad to the Brain Tumor Clinic at Duke, my sister Jennifer and I lied down to try to sleep on the pull-out couch in the little room that adjoined with the bedroom where my parents were. Dad, who was both exhausted and wound up from the very long, tedious drive there that day and somewhat disoriented about what was going to happen the following day, had finally gotten to sleep, and Jennifer and I had only then realized that all of the pillows and blankets were in the closet of the bedroom.  We didn’t dare go in there for fear of waking Dad up.  We lay there on the thin, spring-violated mattress with a threadbare sheet over us, without pillows for our heads, and suddenly we both started laughing.  Punch-drunk is what I guess it’s called: laughing when essentially nothing is funny - out of fatigue so thick we could hardly think – and stress and terror and so many more things that felt so much more powerful than we were at that moment in time.  We had to keep shushing each other until we finally giggled ourselves to sleep that night, with the laughter somehow helping us to steel ourselves for the next day, which was both Jennifer’s birthday and the first day Dad got chemo.

The metaphor that comes to mind most often when I think about my emotional state during the time Dad was sick is a glass that’s completely full: whenever anything additional was added to what was already in there, the overflow was out of my control, and I was completely incapable of handling it.  One of the many things that happened during those ten weeks that threatened to put me over the edge was the car trouble that mysteriously started happening just after Dad’s diagnosis.  Just days after his surgery, I remember hearing a faint buzzing noise coming from under the car hood after I'd parked and taken the key out of the ignition.  My husband checked it out and said that it seemed like the battery was still running, despite the fact that the car wasn’t.  He took it to the repair shop, but they couldn’t get the problem to reoccur while it was there.  It didn’t happen again for about a week; the next time I heard the buzzing noise, I was in the parking lot at the rehab hospital, about to go inside and take an overnight shift with Dad. 

I was torn; I needed the car because I had to drive back home to go to work the next day, but I needed to be with Dad.  In a move that seems totally uncharacteristic for me, I threw caution not just to the wind but completely into outer space and left the car – and the buzzing – in the parking lot and went into the hospital.  Since my dad’s diagnosis, my priorities had never been clearer.

The next day when I went outside to the parking lot after Mom had come back to be with Dad, I unlocked my car door and tried to start the engine.  Nothing.  The battery was obviously dead.  Luckily for me, my aunt, who was at the hospital too, offered to help; we called AAA and they sent a repair guy to check it out.  He replaced the battery, and, when the same incessant buzzing sound started up again as soon as he connected the new one, he told me to get the problem checked out to be sure it wouldn’t happen again.  I took the car straight to the dealership near the hospital, but they couldn’t find a problem; they said they’d disconnected and then reconnected the battery and the buzzing noise had stopped. 

Looking back and remembering the amount of stress I was under at the time, I’m a little surprised that I didn’t just tell the people at the dealership to keep the old car and bring out a new one for me; having to deal with car trouble on top of everything else was definitely an overflow of the stress with which I was equipped to cope.  Instead, though, I drove the three hours home and told my husband what had happened (again), and he showed me how to disconnect the battery under my hood and gave me a yellow-handled wrench to keep in the side pocket of my car door, just in case. 

Just in case was a language in which I was fluent by that time.  I’ve always felt the need to have plans and back-up plans, and, since Dad had gotten sick and had begun to need around-the-clock care, I knew that careful strategies and consideration of all the variables was essential to my entire family.  Having to tote a yellow-handled wrench around did not at all – pun intended – put a wrench in the plans we had laid.

A couple of days later I drove back to where my parents lived and parked my car in front of their house.  I heard the buzzing again after I’d turned off the engine, and I inexpertly used the wrench to disconnect the battery. I became much smoother at the process over the next couple of weeks, even performing the procedure later in snow and in the dark.  On the day when I was driving home from my parents’ house on icy roads and had to turn back due to the route being impassable, I pulled up in my parents’ driveway, stepped out of the car, and heard the buzzing again.  In the snow and ice, I hurriedly used the wrench to disconnect the battery and then closed the hood of the car and went inside, wet from the snow and shaken from the precariousness of the road conditions.  Dad, who was sitting in his red leather recliner chair in the den, looked up from reading the newspaper when I walked in and noticed the wrench that I’d forgotten to put back in the car in my hand.  When he asked and then I explained why I’d needed the tool, he laughed and said, “Well, if the whole OT thing doesn’t work out for you, I guess you could always be a mechanic.”

When Dad was in the hospital the last time and my family was having to deal with getting to and from the hospital on icy roads at all hours of the day and night, I got so adept at disconnecting and reconnecting the battery that I could do it in the hospital garage in under ten seconds each time.  I ignored the stares of the people around me in the garage and declined the help of the security guard who saw me with the yellow-handled wrench and my car hood propped open.  The battery hookup/unhook became part of my commute routine, just like defrosting the windows and driving through Sonic on the way to the hospital to get Dad a Diet Coke.

I still sometimes think about the boy who said he could identify colors by their smell, and it makes me think that maybe part of the reason I made it through the difficulty of the time when my dad was sick and since then is that I somehow recognized that, because my family is lucky, we had the sound of laughter to remind us of the love and hope and devotion we shared even through the most challenging times.

A Ticket Straight to Hell

In March of 2012, just over a year after my dad had died after being treated with Avastin, it was reported in the news that the company that sells the drug in the U.S. was being investigated for possible distribution of counterfeit product.

I knew it didn't matter for my family, really, for a couple of reasons, not the least of which was that Dad was gone and nothing could ever bring him back.  The other reason - and the one thing that kept me from going completely ape-shit about the possibility of my dad having been given a fake drug as part of the treatment regiment he received after his brain cancer diagnosis - because the MRI he had when he was admitted the second time to the hospital had shown good early results of the treatment (decreased vascularization to the tumor site) which could not have been the case had he gotten the fake stuff.  

A combination of what I guess was curiosity and grief and empathy for anyone else who might have gotten a bad dose of the drug still got to me after I read the reports; all I could think about what what a TICKET STRAIGHT TO HELL that kind of deception must be, if indeed the claims were true.

After a couple of days, I decided to call the Avastin manufacturer Genetech, and in doing so I ended up being connected to a very nice representative who said that - so far - the fake "lots of product" had only turned up in California, Texas, and Illinois and that all of those "were acquired through unapproved means."  When I asked what that meant, he said that the patients who'd gotten the counterfeit Avastin had either acquired it through an unapproved source like through mail-order or for unauthorized treatments, possibly off-label uses, again none of which apply to Dad's case.  

When I told him why I was interested in finding out about the validity of the claims, the rep asked about Dad's case, which, as you can tell, I find therapeutic to discuss - and he took an obvious interest in the medical and in the personal details of Dad's story.  He sprinkled in a few kind comments like "Your dad sounds like an amazing man" [I caught the present-tense verb in that statement and really appreciated it] and "I bet that was really hard" to the conversation, but mostly over the course of our half-hour conversation he just asked open-ended questions and listened as I talked.  When I told him that I was concerned that Dad's case would not be included in the statistics provided to his company by Duke University (where Dad was put on the protocol from the clinical trial) on the outcome of patients with brain cancer who were treated with Avastin (more on that later ... ), the rep said that he was taking notes as we talked about Dad's case and that he would cross-reference them to the statistics provided by Duke for comparison.

The rep was nice, and, while of course that didn't solve any of my problems or bring my dad back, it helped just having him listen and seem to take an interest in what had happened.  As we ended the conversation and I hung up the phone, I thought about how big pharma companies and even just phone reps in general usually get a bad rep - and oftentimes they deserve it, but - just like I saw my dad do countless times - this particular rep had taken the time to show kindness to a stranger for no particular reason at all, and I really appreciated the gesture.