Saturday, April 4, 2015

Begging for Polio in a Modern World

I don't remember a time when I didn't know brain cancer.  In the same way that most people cannot remember a time when they didn't know there ABC's or when they couldn't read, I cannot remember a world that didn't include glioblastoma multiforme (GBM) brain cancer.  

My mother, Genie, was diagnosed at 38 in 1981, when I was 6 years old. She had two brain surgery resections, she endured enough radiation and chemo to take down two elephants and she fought valiantly for 3 years, when the average life expectancy remains stuck at 18 months, even 30 years later.  She fought because a. she was a fighter by nature (guess you are seeing now that this apple didn't fall far from that tree) b. she had three children that she simply couldn't bear to leave behind in this world. But she was forced to leave us behind three days after Christmas in 1984.

My brother, Stephen, was also diagnosed with the "beast" in February of 2009 at 38, when I was 33 years old.  He did not have any children but he did have one amazing, life sustaining, wife Carin.  While Stephen endured two complete surgical resections, radiation, chemo, and a new drug called Avastin, he unfortunately left this world in August of 2011, 8 days before I turned 36. If the brain cancer world has gained anything between 1981 and 2009, it is that for many, the treatments are not as horrifically difficult to endure.  Stephen led, as reasonably as one can with a terminal cancer diagnosis, a relatively "normal" life until the last few months of his battle.  I like to believe that it was through my mother's generosity of donating her body to the University of Kentucky Markey Cancer Center for research, that her youngest son was given the gift of a high quality of life, that she did not enjoy during her own battle.

So while the medical community attempted to tell my family that we were simply struck by lightening twice, I called shenanigans on that preposterous notion.  Some crazy shit has gone down in my family, make no mistake, but two brain cancer diagnoses in the same immediate family, at the same age, is not a lightening strike, it is called a familial glioma. Good Lord, do I wish I was blissfully unaware of this reality, but I digress.

To make a long story short, my family has been participating in the International Gliogene Study out of MD Anderson Cancer Center in Texas since Stephen's first tumor was diagnosed.  Were we notified about the study by his team of doctors in Louisville? Nope. Stephen's little sister, yours truly, that can't turn her brain off, decided that someone must be studying this type of thing. In the billions of people in this world, my family couldn't possibly be the only one facing this nightmare in the modern medical era.  

And his little sister was right.  Turns out that there were over 14 study sites throughout the world, studying these "lightening strikes" for families just like ours. So my poor brother endured extra blood draws and my mother's medical records were resurrected from a limestone cave in Central Kentucky (I am not kidding folks!  Baptist Health, aka Central Baptist Hospital, was able to find my mother's hospital records from the 1980s to send to Texas!).  My Dad, my older brother Neal, and I all had our blood drawn and sent to MD Anderson to see if we could be part of the solution.  And I have to say that I believe that we were as they are getting very close to mapping the familial glioma gene, in the same way that other cancer genes have been mapped for years (think Breast Cancer, Ovarian Cancer, etc.)  

(This whole being part of the solution thing is Genie's legacy in me.  I swear it is like it's own disease, a good one I suppose, that I keep trying to pass on to my kids.)

They are most likely years away from providing definitive testing for folks to tell them if they have the gene and would you really want to know?!  Speaking from experience, I wouldn't. Until brain cancer is no longer a death sentence, knowing just makes you a ticking time bomb.  

I have well meaning, caring, folks ask me all the time if I have routine MRIs to see if I have a brain tumor like Mom and Stephen.  I try to be gracious and explain that even if I had an MRI this morning, showing no tumor, a tumor of the worst cancer known to mankind, could begin growing tonight  (after my University of Kentucky Wildcats take the Wisconsin Badgers out of this March Madness which is really April Madness, as an astute friend of mine pointed out to me this week).  And I could be dead in 6 months, before the next "preventative" MRI even happened.  And just think, in August I will turn 40 so I made it past 38, so that's something (or so I tell myself).

For the record, if I have brain tumor right now, I don't want to know.  It will rear its ugly head very quickly, as the size of the "beast" doubles every 2 weeks, so I will take 2-6 weeks of being blissfully unaware as I promise that small amount of time of not knowing I had cancer will be the best gift I could have been given as when you know, it changes EVERYTHING yet ironically, nothing changes at all. 

And check it out, even if I knew I had the familial glioma gene, it's not like I could pull an Angelina Jolie, and have my brain removed (obviously a brain transplant might have remedied stupid mistakes for her like Billy Bob Thorton, but apparently the brain started working when Brad Pitt came calling!) And do not think I am making light of what Jolie has done in mitigating the risk in losing her own life and educating others about familial breast and ovarian cancer genes.  

If I had her genes, you better believe I would have my breasts and ovaries removed, like yesterday.  I don't care what the doctors or research says, breasts and ovaries may be required to bring life and sustain the life of a new human, but to the current owner, they are let's say, inconvenient on their best day. If having them is risking my long term survival, and I had her money to buy me a new fabulous pair of breasts, where do I sign?! Until you have walked a mile in these "cancer pervades my immediate family" shoes, don't even talk to me.  You don't get it...and this "it", you don't want.

And you are thinking, Lucy, what in the world does any of this have to do with polio?!

Well, glad you asked.  As you see, just last Sunday, the TV news program "60 Minutes" aired a segment regarding an experimental treatment study for glioblastoma multiforme that is being conducted at Duke University, the nation's leading research center in brain cancer.  Apparently the researchers at Duke are injecting brain tumors with, you guessed it...the polio virus.  Okay, it is a form of the virus that has been rendered harmless to the rest of the body but apparently eviscerates brain tumors when injected straight into the brain.  Craziness, right?!  

(If you would like to watch the 60 Minutes segment you may watch it here: 60 Minutes: Killing Cancer Part 2)

Does the premise of this treatment completely blow your mind?! The hypothesis here is astounding and unbelievable.  But for me, the mere timing of it had me in tears and very conflicted.  Stephen died in 2011 and this study began in 2012 and as those tears were brimming in my eyes as I processed what this trial could have meant for our family, I remembered a cruel reality of this life.  Close only counts in horseshoes and hand grenades. Close doesn't deliver my brilliant, witty, kind, caring, and loving brother, one of the only human beings on this planet that shared my history, back to me.

Does it tell you how determined some folks are to stick around this planet that they willingly sign up to have their brain injected with Polio? And would it blow your mind to know that while there are two long term "survivors", at 3-4 years post treatment, and that half the participants died anyway.  So these people are leaving their homes, risking what little time they have left, driving and flying from all over the country, heading to Duke, and having their brain injected with polio when there is a 50% chance they will die anyway.  But, 50% beats the 100% chance of death that comes with a "beast", so who could blame them?  

So while this die hard University of Kentucky Wildcats fan will adamantly cheer against the Duke Blue Devils tonight in the NCAA Men's Basketball Tournament.  And will do the same, if given the chance, on Monday in the National Championship, I am a huge fan of one Duke team.  The team that is saving lives with a virus that for decades, we tried to eradicate, and has ironically plagued the lives of so many others with immense pain and suffering.  If the definition of desperation is begging for polio to be injected into your brain then using the polio virus to eradicate brain cancer is the definition of making lemonade when life hands you lemons.

This life is so strange. We are guaranteed no tomorrows.  Embrace the fact that today you are not begging for one horrific virus to be injected into your brain, to save your life.  

And then do what Genie would do, go be part of the solution.

(If you missed my blog post remembering my mom, just click here-------> Remembering Genie Jett)