2 Year Anniversary

Well, I did it. I beat the average survival statistic for a patient with a Glioblastoma Multiforme – the deadliest of all the brain tumors. I have brain cancer thanks to the mysterious golf ball size of aggressive malignant cells that grew in my brain. It’s been 2 years since that beast was removed by my brilliant neurosurgeon.

In those 2 years, I’ve gone through chemo and radiation treatments (which ironically has a risk of creating brain tumors) and began a clinical trial intended to train my body to fight the cancer. I’ve had 2 seizures (not counting the first) that have landed me in a hospital bed – the second one being life threatening. I spent months without driving privileges and still managed to get my kids to school and go to the grocery store thanks to my mom and my kind neighbors. My mom’s love and caring have provided my family with a consistent ‘normal’ life and have allowed me to focus on healing and fighting. I have grown even more fond of my neighbors and our spontaneous driveway parties and planned outdoor movie nights. I’ve napped, a lot. I went to New York with my husband. I’ve witnessed his courage, strength and love each and every day. I went to New York, London, and Paris with my family. I’ve read numerous books – most of them good. I met Diana Gabaldon and got her autograph. I lived through a kitchen remodel (not recommended while going through treatment.) I adopted a dog who is both sweet and crazy needy. I’ve watched my children continue to grow and thrive. My son’s guitar skills, love of soccer, creativity, ingenuity and love for some adventure amaze me every day. My daughter’s kindness, persistence at resolving social conflicts, strength in the face of adversity (like soccer ball kicks to her face), her natural skills in caring for young children, and her love of books and learning make my heart swell with pride. I have so many more things to be grateful for as I’ve attempted to live every day left in my life with joy and appreciation for the moments I’ve been blessed to experience in my uncertain future.

But the fight continues on. I’m fighting to still be here to celebrate my 4 year anniversary and my 6 year anniversary and so on…

Thank you all for the love, support, prayers and healing energy you’ve been sending my way over the last 2 years. They’ve gotten me to this point. I’d appreciate the continuing support to get to another anniversary.

As we continue the debate began by Brittany Maynard’s decision to move to a state that supports ‘die with dignity’ laws, let’s not forget the thousands of other people fighting this horrible disease and other types of brain tumors. We should also be discussing what can be done to develop new treatments and search for a cure so we don’t have to think or make decisions about how to relieve our own suffering in our last moments of life. Many of us with GBM’s have survived for extended periods of time, even if we received grim and specific prediction of the time we’ve got left. Fight on and see what miracles arrive and do your part to help others live longer in the future.

If you feel compelled to help focus on the brain tumor element of this story (not saying the national dialogue around ‘die with dignity’ is unworthy or less important), make a donation to the National Brain Tumor Association or any other organization of your choice that helps support research for treatments and cures, support for families and patients, and raise awareness of the other side of Brittany’s story.

 

Brains: Fascinating Things

Even before I had brain cancer, I was intrigued by the brain’s endless wonders. Foreshadowing or Irony?

I’ve loved reading Oliver Sacks’ books because it’s fascinating what the brain is capable of – healing, compensating – and yet how delicate and complex it is when injured. The idea that you could look at your wife and think she’s a hat was an amazing concept. Having experienced Expressive Aphasia (even temporarily), the complexity, fragility and mysteries of the brain are even more enthralling.

When I took an art class at a local community college (16+ years ago), we had to make a piece using pointillism and parallel lines. I made this:

When I started experimenting with needle felting to make pins for a friend’s charity fundraiser, I made this:

An amazing local band (Corpus Callosum) was receiving a grant and I thought it would be cool to have brain pins in their honor. Then I found out the greatest needle felt artist EVER (Stephanie Metz) would be there and I wimped out. She was my inspiration for exploring the medium, but c’mon…my work looks like a Needle Felting FAIL compared to her work. Needle Felting takes INCREDIBLE patience and focus – which I don’t have. I’ll stick with the knit and felt method. 

I’ve always wanted a phrenology bust, like this:

Phrenology – while now obsolete and a little wack-a-doodle – was the precursor to neuroanatamy and psychology. Read about it – you’ll be amazed.  

I got my BA in Behavioral Sciences and my favorite class was Abnormal Psychology – where we learned about behavioral disorders and mental illness. What was so interesting to me is that mental illness can be inherited – I had never realized that before. The question is what inheritable brain function or chemical imbalance triggers the mental illness. Some mental illness can be a result of a subconscious means of coping with a traumatic experience – some believe that’s what triggers multiple personality disorders. People with mental illnesses can lead normal lives until WHAM! something triggers a switch in their brains and they’re schizophrenic. There are so many possible variations on ‘abnormal’ brain/behavior function – it just further illustrates that delicate, yet resilient complexity of the brain.  

It’s just that complexity that makes Brain Tumors so challenging. There is no known ’cause’ of brain tumors, there are so many types of brain tumors, it can strike anyone – young, old, man, woman – they are indiscriminate. The blood-brain barrier limits treatment options. The criticality of our brains (we can’t live without it) make surgery, radiation and drug therapy more risky – the location, depth, size; is it primary or metastatic; is it encapsulated or infiltrating. That variability require treatment options that cater to the individual in a way that perhaps other forms of cancer don’t. Brain Cancer Research is desperately underfunded in comparison with other forms of cancer. We’re running out of colors for awareness campaigns.  But what we really need is a cure.