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.

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

The Truth about Childhood Cancer

September is National Childhood Cancer Awareness Month, and I'd like to share some information about a project about which I have recently learned in regards to childhood cancer.

This project, called The Truth 365, is a ground-breaking, grass-roots documentary film and social media campaign that has set a goal to give a voice to all children fighting cancer and those who care about them.  They want to make all of us aware of the things that need to be done in battling pediatric cancer and to spotlight the state of childhood cancer research funding by uniting the childhood cancer community, government officials, top pediatric oncologists, and several of the country's most influential celebrities. 

This is an important effort, and here's why:  The Truth is that childhood cancer research is vastly underfunded, and the funding that's needed needs to become a priority for all of us, right now, because childhood cancer is the #1 cause of disease-related death in children under the age of 14, killing more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined. In the United States alone, 13,500 children are diagnosed with cancer every year, which translates to 46 children and their families getting a cancer diagnosis every single day, 365 days a year.  And although one out of every five of these children who are diagnosed with cancer will die, those who survive are often left with life-changing side effects from the cancer and the treatment that was used, which is often based on research done on adults with cancer instead of on children. The Truth is that the incidence of invasive pediatric cancers is up 29% in the past 20 years, and yet only $20,000 is invested in cancer research for every $595,000 invested in pediatric AIDS research.  Of the National Cancer Institute's budget of $4.6 billion, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancer combined received less than 4%.

The Truth is that this isn't right - and that it's not acceptable just to look away, as if these statistics don't affect every one of us, because they do.  To learn more, check out the Facebook page for this campaign and the group's website  to find out what's going on in their efforts, and stay tuned for the launch of their film which is due out on September 13.