I have started this post and deleted it a million times this week. I want it to reflect the great amount of respect and love I have for the people it is about. I have never met any of them in person. But they have been a big part of my healing process over the past 22 months.
Since my dad’s diagnosis of Glioblastoma in March of 2012 I have scoured the Internet for as much information I could. I wanted to educate and prepare myself for what was going to happen to my dad, and also get an idea of what my family was going to experience. As most of you know the internet is a scary place to start looking up GBM. There isn’t much, if any, positive hopeful information out there. Even the ER doctor that initially diagnosed my dad warned me not to go home and google it. (Which if you have read any of my blog know that I am google obsessed so it was the first thing I did.) One positive thing I did find on the Internet was a group on Facebook. Simply titled Glioblastoma Support Group. I joined it as soon as I found it. It was the best thing I ever did. It was comforting to find so many people feeling the same things I was. After dad died I moved over to the second group associated with it called The Next Step (Coping after a GBM Loss). There are currently over 1,000 members, all people that are dealing with the grief of losing a loved one to GBM.
Glioblastoma Multiforme is actually considered a rare cancer. An average of only 22,000 people per year in the United States are diagnosed with it compared to 295,000 people per year in the United States diagnosed with breast cancer. (These are numbers I have found on the Internet so I am sure they are not 100% accurate, but it does give you the general idea of the difference.) There are millions of sites and foundations dedicated to breast cancer. The whole month of October is pink for breast cancer support from yogurt lids to NFL football players wearing pink socks. It makes me mad. There IS a month dedicated to brain cancer. I had to google it to find out which one it is (May) because there is no big hype about brain cancer. No announcement on the news. No gray ribbons tied to trees. Nothing said about brain cancer, ever really. Until now. Until Brittany Maynard.
Brittany Maynard has been the face of Glioblastoma the past few weeks. (I am not going to write my feelings about her situation in this post, as I already have here.) It has caused a media uproar that I finally have had to just ignore because it makes me very frustrated. This is why. A couple of weeks ago I was at the dentist and in the magazine display was the People magazine with Brittany on the cover. Of course I had to read it. Afterwards I sat it down and looked at my husband in tears. “Why are you crying?” he asked. I couldn’t stop my angry words “My dad should be on the cover of this magazine, not her. All the others that have fought this beast to the end should be on the cover, not her.” He took my hand and let me cry for a minute and then said “Well at least she is making more people aware of this type of cancer. That is a good thing.” Yeah yeah, he was being logical and level headed about it. I was being the hormonal crazy woman in the dentist office with the front office staff staring at me.
As soon as I got home I got on Facebook and wrote a post on our group wall about how frustrated I was about the cover of the magazine. I inadvertently started a shit storm. All of us have been through the end stages of GBM. We all know how bad it is. We all agree we know why Brittany chose to do what she did. But we don’t all agree with whether it was “right” or not. I respect everyone’s opinion and beliefs. I felt horrible that I had stirred up so many emotions in our group meant to support each other. I finally pulled the post down after about 160 comments.
There will never be a cover of a magazine showing all of our loved ones that fought so bravely to the end. No people writing long newspaper articles or news broadcasts about how inspiring they are for what they did.
But there will be this blog post. (Even if it is just my little blog that has probably 20 readers.)
My friends on the Facebook group I mentioned above willingly shared these pictures with me. These are pictures of their loved ones. Some of the other faces of GBM.
Ray, 47,diagnosed on 4/22/2011 and died 4/2/2012.
Robert E. Bailey. Survival time after diagnosis 27 months.
Jack, 63, died 9-22-2010, 7 months after diagnosis.
Dave, 58,First seizure Aug 16, 2012, died Aug 28, 2014.
Oz, 60, passed away 12/23/2013 three months after diagnosis.
Robert, 73, died October 11,2013, 5 months after diagnosis.
Terry, 52, died 11/9/2011 – 31 days after diagnosis.
Bonnie, diagnosed February 2012. Died 2 years after diagnosis, February 2014.
Igor, 62, diagnosed Sept. 9 2013, died June 1 2014 after 8.5 m fight.
Merv, day after craniotomy, Sao Paulo Brazil, June 2013
Dale, 60, diagnosed October 2011. Died January 2012.
Steve, 63, Diagnosed June, 2009. Fought the huge fight for 3 yrs. 8 months until Feb. 2013.
John, 58, died 4/17/2013, 9.5 months after diagnosis.
Maynard, 79, diagnosed 3/2014 passed on 4-10-14.
David, 68, diagnosed 4/1/2011, died 3/22/2012.
Jimmy, 58, died July 22,2014. Eleven months after diagnosis.
Maureen, 76, passed away 9/10/2014, four months after diagnosis.
Megan, was diagnosed on December 1, 2004 at the age of 16. passed on August 10, 2012 at the age of 23.
Nancy ,50, diagnosed 10-18-2005 died 2-14-2006.
Stephen,29, Diagnosed 3/24/14 passed to glory 9/4/2014.
Craig, 43, Diagnosed 2/14/10 passed away on 11/21/2013, 45 months after diagnosis.
Kathy, diagnosed July 2012 fought for 20 months and passed on March 20, 2014.
Brent, 38, died October 24th 2011, 17 months after diagnosis.
Jay, 56, diagnosed Dec 11th, 2013. Died Aug 11, 2014. 8 months to the day from DX.
Nicky, 32, Passed March 13, 2014 after battling brain cancer for 9 yrs.
Passed away 11/4/12 4months after diagnosis
Mike,48, diagnosed October 2012 passed June 21st, 2014 after a 20 month battle.
Carol,72, died April 7, 2013, 8 months after diagnosis.
Jacqueline, 75, Passed away 5/19/2013, 7 months after diagnosis.
Evelyn. Passed 9-4-14, 7-1/2 months after diagnosis.
Bill, 52, diagnosed 4/22/2011 and died 6/5/2012.
Sarah, 77, died 11-15-10 after fighting 21 months.
John, 51, passed away 22nd May 2013, 3 months after diagnosis.
Thomas, 66, died March 10, 2012 3 months after diagnosis.
Jeanette, 76, died August 7, 2012, 4 months after diagnosis.
Nick, 27, diagnosed 4/13/11, lost his battle 9/25/2012. 17.5 months from diagnosis.
John, 59, diagnosed 4/6/10, died on 3/31/13, almost 3 years after diagnosis.
Kal, 55, diagnosed September 25, 2010, passed away June 8, 2014.
Mark,58,diagnosed 8/7/13 fought for 11.5 months. Left us 7/27/14.
Jeff diagnosed April 22, 2013 surgery April 27, passed away 11 months after surgery March 27,2014
Gregory Kilbourne, diagnosed 2/24/2014, gained his wings 11/3/2014
Penny, diagnosed 8/2/14 and passed on 10/24/14.
Cindy, (in the hat), diagnosed June 2, 2009 fought until she earned her wings Sept 16, 2012. 3 years, 3 months, 14 days.
Gary, diagnosed 1/23/12 passed away 9/18/12.
Rosemary, 64, diagnosed 4-25-14 passed 10-27-14 six months after diagnosis.
Judy, 69, diagnosed 10/17/12, passed 11/3/12 (just days after complications from GBM resection surgery).
Colin, 51, diagnosed 9/19/2013 passed 11/13/2013.
Juliette, diagnosed 9/15/2014, gained her wings on 9/17/2014.
Scott, 43, diagnosed 7/7/2011, joined the Angels in heaven 08/02/2012.
Ron, 10/30/48 -12/18/05.
Bill, diagnosed July 2011, died Nov 2012.
Dennis still fighting after 29 months.