You mean I was not the only one?

Lanette’s Little Bit’s

I attended my very first conference in California hosted by the National Brain Tumor Foundation in 2000.  ( NBTF is now NBTS they merged a few years back)  It was a whole weekend filled of information.  I arrived on Friday morning and Friday evening it began.  They had an introduction and explanation of the next few days.   I was filled with anticipation.  I was so excited to learn I  could purchase the recorded sessions on cassette at the end of each break out.  This was all new to me.  This was perfect but difficult to decide which session to go to next.  I  purchased every session so I could  take it home to share and relisten.  Funny right  I was  purchasing cassettes.    So much took place that weekend but one session stands out.  There was this drug researchers were working hard on it was called AVASTIN.    I couldn’t write enough infromation down. I couldn’t grab enough handouts. OMG this was true information overload and I wanted more.   The biggest impact the weekend had was meeting “other survivors”.   I was not the only one.  They had fresh scars , some wore bandanas. Some had trouble walking and others trouble talking.    It was also a little scary because I didn’t suffer some of the side effects I was seeing others suffering from.  I was there alone and so many others had their caregivers WOW this was so much to take in.  It was all the introductions the new friends I can still remember the faces not the names.  I remember the dinner it was a fun event they had on Saturday night.  They assigned seats and  you were encouraged to connect with others.   It was the first time I met David M Bailey and Matthew Fullerton.  It is the first time I heard david perform and I was so moved by his song  “ONE MORE DAY”.   After the DMB concert  I knew that my family had to hear this.  This music was  proof we were not alone and proof  there is HOPE.   I bought the CD and even more awesome david autographed it, I was so happy.  I can still remember the fun everyone had at the dinner.  Who could have predicted that Matthew and David would become two of my best friends.  They would be part of the many #memorymakingmoments that would change my life forever over the course of the next 10 years of  my #braintumorjourney ( Matthew and I are #BESTIEBRAINBUDDIESFOREVER  and our beloved david more about him on another #Lanette’sLittlebits #gograyinmay day.  ) During this weekend I just kept saying  My family  had to expierence this!    I just had to let them know we were not the only ones!  Then it happened I met Julie.  Julie was her name.  Julie G.  She was diagnosed with the same tumor as my grandma but she was living this made me happy.   I never met anyone with the same tumor as my grandma.  Honestly I really didn’t know much about brain tumors so this event was educating me REAL FAST!   Now Julie and this singer and his best friend are all GBM survivors this is incredible.  Julie and I chatted I learned  she had two girls ,she was a single mom just like me.   Julie was there with her parents so they could try to make sense of this madness.    I met them as well.   Before the weekend was over Julie and I exchanged contact information and agreed to stay intouch and to maybe meet up and attend another conference.  The weekend went by so fast.  I went home and the story goes on but it is my brain buddie Julie that I want to stay focused on.   Keep in mind this was just about 18 years ago and social media was not what it is today.  ANCIENT Aol was the “THING”.  You know the “YOU GOT MAIL”   I was just learning how to do the whole email thing and I would sign on in hopes to chat with JULIE.   We stayed in touch and then I noticed about a year into becoming friends I didn’t hear from her.  No more YOU GOT MAIL from Julie.   No more seeing her name off to the side letting me know she was online.   This is when I learned the value of always getting a caregiver or loved ones contact information just incase.   It still didn’t sink in.  I was new to all this brain tumor stuff.   Life is Life and the not communicating  I just figured we get busy and move on.    I received my  quarterly NBTF  snail mailed newsletter.   Flipped through and then it happened.   The head line read something like this:  Two girls The daughters in memory of their mother Julie G  raised over 10k hosting a fundraiser for research.  OMG  it was Julie.  Her daughters.  My friend.  No wonder no emails.  Oh no my heart hurt I cried. I shared with my then boyfriend now husband.   My heart new this already but my mind once again got a reality check LIFE IS SHORT.   Oh and that  David M Bailey song  ONE MORE DAY it  meant even more to me now.          BRAIN TUMOR AWARENESS :  Her name was Julie and she died, I cried and life got real.  I could be a Julie.  Ok so my tumor was  not GBM  and I was not my GMA but wait they tell me my tumor diagnosis can turn ugly like GMA’s.   So today Her name was Julie and I will never forget her.   If you are on this journey you understand.  That’s all.