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.

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. 

In Terms of Pain

There’s a weird thing about relativity that goes on after watching a loved one suffer and then die from cancer: pretty much no ailment really seems all that bad.

When I start to think that I don’t feel well, my thoughts immediately go to the look on my dad’s face when he was so sick, the confusion in his eyes when he asked over and over “Why am I not getting better?” and the desperation in his voice when we brought him home from the hospital for the last time and he asked me, “Are you sure we have enough medicine?”  I feel certain that the emotional pain he was in and the stress he felt for so many reasons were worse than the physical pain towards the end; all of it was nothing short of torturous.

So these days when I think about something like pneumonia, I think: not that bad.  A bout of the flu?  You’ll get over it.  A migraine?  Take some medicine and quit your whining.  Throw your back out?  Give it a couple of days and it’ll be like it never happened.  Common cold?  Jesus, get ahold of yourself you freaking wimp.  These are not things I say to other people (not out loud, at least), but I definitely say them to myself, just one more way that my perspective has changed.

I remember both times my dad was in the hospital and the staff seemed to be constantly asking him to rate his pain. Every time he was asked, he was shown a little visual guide; it seemed to annoy him much more than it helped him.  He always did what I came to think of as "white coating" his response (sugar-coating for the white coats); the number that he gave and that was recorded in his medical chart was always lower than it actually seemed to be to those of us who spent a lot of time with him.  Many times Dad was very obviously in pain, grimacing and asking for a cold cloth to be placed on his head, and then when a health care worker walked into the room his demeanor shifted:  "How's it going, Doc?" or "I hope your shift ends soon - it seems like you've been here for days and I know you're tired!" he would say. Truth be told, sometimes it made me angry, not necessarily at him or at the staff member but just in general at the fact that he felt like he needed to pretend to feel better than he was actually feeling.

Several times I thought about following the nurse or whoever had asked him to rate his pain out into the hallway to ask them to put a footnote explanation alongside the number Dad had given, but for some reason I never actually did it.  What they didn't realize besides the fact that Dad tended to "round down" was that his natural pain tolerance was about 100 times that of most other people, the result of decades of enduring grueling athletic workouts.

I know it’s not a contest, and I know that pain is pain and sometimes it just helps to let out a moan or a cuss word in complaint of the discomfort that’s ailing a person.  But, like pretty much everything else in life, pain is linked to perspective.  I WISH I STILL THOUGHT A HANGNAIL or even a raging case of poison ivy was worthy of whining.

Cancer Myths - and Grief and Anger

I remember studying about the stages of grief when I was in college over two decades ago – and I remember reading almost incessantly about grief just after my dad died three years ago.  There is so much that I didn’t know about grief or grieving before I was thrust into it myself; even while I was reading the words written by the “experts” and professionals in the field, I realized that what had been put down on those pages was just the tip of the iceberg, understated and addressed only in general terms.

Some people think the information that’s out there about the five stages of grief is baseless.  Others seem to think that the stages exist but that the grief process isn’t nearly as clear-cut or as linear as they suggest.  I remember the grief counselor that led the grief support group I attended showing a picture of a graphic representation of the grief process: in that rendition, it looked more like a tornado, spiraling and circling back and forth, which seemed much more accurate to me. 

For me, anger and sadness are two of the emotions associated with grief that keep resurfacing the most often. Sadness, mainly because I miss my dad so much that my heart hurts, and anger, for that same reason and so many other reasons too.  

I’ve written many times about my feelings of anger associated with my dad’s cancer diagnosis and death.  I’ve always thought that I had a long fuse – slow to anger, fairly quick to try to put out the fire whenever possible.  But in the me that I am now, I’m not sure that’s the case – or if it ever will be again.  There are certain things now that launch me into white-hot fury in the blink of an eye, sometimes for reasons that I can’t identify, explain, or understand.  Seeing information like this is one of those things:

“Big Hospital Finally Telling the Truth About Cancer,Johns Hopkins”

I’ve seen this and similar bullshit information posted on Facebook and other sites on the Internet at an increasing rate lately.  It isn’t those who re-post or share the info who make me so angry; it’s the idiots people who write the articles, posing as authorities on a subject about which they obviously enjoy spewing shit like the septic tank hose coming out of an RV of frat boys after a weekend at a music festival fabricating and embellishing for reasons that are lost on me. 

I'm pretty sure he said this in about 400 B.C. and that he didn't mean it literally, because he also said this:

For the record, Johns Hopkins did not publish or endorse the article in the link above, and neither did any other medical institution or research body.  The assholes authors have apparently hooked many readers by weaving some true information in with the idiotic crap exaggerations and falsehoods – and it doesn’t hurt their efforts that the bottom line is that we as a society want to believe that we have control over something as horrible as cancer and death.  As is stated on the Johns Hopkins website, “the gist of this [unscientifically based article full of misinformation]… is that cancer therapies of surgery, chemotherapy, and radiation therapy do not work against the disease and people should instead choose a variety of dietary strategies.”

OBVIOUSLY it’s probably a better idea for health reasons to eat a balanced diet and to exercise than it is to not do those things.  OBVIOUSLY there are cases in which traditional standards of care are not effective against cancer and in which sometimes a supplemental or alternative treatment is advisable when more research-based interventions have failed.  OBVIOUSLY it makes sense to adopt habits that boost one’s immune system.  However … cancer isn’t caused by nutritional deficiencies, nor can it be “corrected” (even just that terminology makes me mad) or avoided by taking supplements, breathing deeply, exercising, or eating foods like blueberries.  Surgery does not cause cancer to spread – and spreading that kind of information could absolutely be harmful if people believe it. 

I remember being told by more than one person (who was well-meaning, I GUESS) while my dad was undergoing treatment for brain cancer that we should keep him from ingesting any sugar because “cancer feeds on sugar.” 

REALLY?  Is that all it would have taken to save him?  ("Ever heard of the Krebs cycle, idiot?" is what I wanted to say in response.  Somehow I held back - but maybe I shouldn't have.)

Of all the ridiculous bullshit fiction out there about causes/treatments/cures for cancer, probably the one that offends me the most is this one: “Cancer is a disease of the mind, body, and spirit."  Some of the most spiritually fulfilled, healthy living, intelligent people I’ve ever known have been diagnosed with cancer.  Both before and after their diagnoses, these people did not have diseased minds or spirits - and it's beyond nonsensical to imply otherwise.

Perhaps worse than the false hope this misinformation seems to seek to provide is the implication that the power to avoid or cure all types of cancers is within each of us, which is an absolute untruth.  I remember the guilt and the pain in my dad's eyes when he asked if he had done something to cause himself to get cancer, and it almost kills me.  A person who is diagnosed with cancer does not need to be made to feel guilty - or contaminated or in need of spiritual "correction" - on top of everything else they are having to cope with.  

I only wish that diet and "spirit" alone could prevent or cure cancer.  If that were true, I wouldn't know what I know today about grief, because my dad would still be here on this earth, happy and healthy.

If you come across one of the articles on the Internet perpetuating misinformation about cancer, I urge you to post a rebuttal, even if it’s just a link to one of these scientifically-based websites:

The Cancer Update is a Hoax (Johns Hopkins)

Don't Believe the Hype: 10 Persistent Cancer Myths Debunked

Let's Beat Cancer Sooner - New Treatment Info