May is Brain Tumor Awareness Month.
Wednesday, May 7th…Warm and Sunny in New Milford, CT…perfect day to watch a softball game. That was the plan. But plans have funny ways of never quite working out the way we hope.
May is Brain Tumor Awareness Month…were you aware? Well now you are. And while we are on the subject…let’s chat…shall we?
I promised to be more open and honest with all of you about what it’s really like to live every day with Brain Cancer. So here goes. Yesterday I got up…took a bath…came downstairs to start my day. I sat at the computer…and all of a sudden said to Greg, “I think…” and that was it. Ran to the bathroom and started to shake. Then came the vomiting. The crying…the cold tile floor of the bathroom. The inevitable walk up stairs to take my medicine and finally get back into bed. Realizing that I was probably too weak to go to the game that day.
But then I remembered who was playing. New Milford vs. Newtown. For those of you who are not familiar with the Sandy Hook shooting that took place in Newtown, CT…well…it’s probably the saddest tragedy our state has ever seen. And definitely one of the most evil.
I told Greg that I still wanted to go to the game.
That’s the way I seem to be living these days…and I’ve been really lucky to share my philosophy with some other very very sick friends.
With all terrible illnesses… comes good times and bad. And right now…My mind, my heart, my creativity, my soul wants to just go go go! I’ve never felt so alive and stimulated…excited to be where I am and especially what I’m doing…every day I can’t believe who I get to talk to and what we are planning…I promise to tell you all about it soon…but it’s still confidential!
But my body…the part that my Brain Tumor is screwing with…is so weak. Every morning I feel like I can’t wait to go…and I have to drug my body up and drag it behind me. Because it would prefer to shake, vomit, sleep and keep me in a state of mind numbing pain.
So, that’s what I do. I take all my seizure drugs…the max that I can…I take my Cannabis Oil…but there are still times that even the meds can’t keep the bad days away.
So, yesterday was a bad morning…but I rested…took my medicine…took a shower…and Greg drove me to the game. Unfortunately our team lost. And at the end of the game, while Coach Holden was talking to the bummed out girls…I went over and interrupted the team meeting. Instead of focusing on the score…I wanted to give them all some perspective. I bent down and put my arms around their coach…and said, “Hey Guys! I just wanted to let you know what you gave me and Eileen’s Dad this afternoon. I was throwing up in the toilet this morning…my husband was holding back my hair and I was crying because I felt like I couldn’t take one more morning of this. But then I remembered that I had a softball game to go to. And I got up, and showered and took my medicine and came out, on a warm sunny day…hugged a bunch of teenagers, and kissed a proud father who got to watch his daughter coach her team in a game! A Father who is Dying of Brain Cancer. Thank you for giving us that gift. I don’t care what the score says…you guys are winners in my book.”
And then they all started to clap. As I walked away I heard the coach say, “There’s more to being a team…than playing a game.”
So glad you helped me coach your team…when it was really me who needed the coaching!
So…during the Month of May…Brain Tumor awareness Month…lets just all remember to keep on going…keep playing in the game until the game is truly over!
And if you would like to support all the work we are doing with The CT Brain Tumor Alliance…please got to CTBTA.ORG