News from the Back Deck 11-4-09

Hey Everyone~

I was under the (very mistaken) impression that the end of summer would bring with it some 'down time'--has anyone seen any down time? It's been a pretty eventful few weeks since I last checked in with you all...

Devon's field hockey team continues to move along in the Championships. One of the Moms, unbeknownst to me, contacted Newsday a while ago and shared with them the story of the "miracle Mom" on Devon's sidelines. She shared my story, and the fact that I moved mountains to get to the games and cheer on the sidelines, hiding the fact that behind the scenes there was more going on than meets the eye. A reporter called me one evening, started to share the story that had been told, and asked me a bunch of questions. Going over my "story" from the beginning always brings with it a great deal of emotion--kind of like picking a scab. I do it time and time again because I am hoping it will help someone, but it still is uncomfortable for me. It turns out the reporter's father is struggling with cancer as well, so naturally what started as an interview ended in me consoling the reporter. All for the cause I figured, all for the cause. She stated she was going to send a photographer to the game to take a picture of me and Devon, and that the story would run in the Sunday paper.

Imagine my surprise to show up at the field and have a guy looking for me with a video camera. Turns out newspapers aren't just paper any more! The very nice gentleman performed yet another interview, bringing me to tears at times. After the game was over, he spent some time with Devon performing a one-on-one interview with her. He advised us the tape would probably be available on line the next day. I was eager to hear what Devon had had to say, as it was not possible to eaves drop on the interview. The next day rolled around and I was headed for some r&r in Tampa, but there was nothing on line. The days went on, and I had a blast sunning myself and being spoiled by my loved ones in Tampa, but no article ever appeared and the film never showed up.

It appears we must have been "bumped" for a story about a girls' volleyball team in Lindenhurst that was raising funds for breast cancer. Now, I think that story is fabulous--any time young people "get caught doing something right" is a good thing. However, I can't help but feel robbed. I shared all I had with these reporters, and they didn't even have the decency to get back in touch with me and explain. And my story is the REAL story of cancer--not the pink fluffy piece with cupcakes and cheerleader pom poms. My story is the nuts and bolts of a teen aged girl facing breast cancer 24/7 and the manner in which she survives. Wasn't that fit for print?

It came as a very welcomed respit to be able to spend a few days in Tampa. The one things my relatives did that really surprised me was ask about my pain levels. Instead of an empty "How are you doing?" they asked repeatedly "How are your pain levels today? What can we do for you?" The small difference in the line of questioning made a huge difference on this end--they got it--they realized that I do indeed deal with pain on a regular basis and were asking what they could do to help. Boy, do I love that crowd!

While down there, I learned that another woman from my online website had passed away. Her husband was actually the one on the site to whom I "spoke" and I felt his loss so deeply in the grief he shared. The web site (and I) were recently spot lighted in a periodical put out by Massachusetts General Hospital. Check out (http://protomag.com/assets/medical-social-networking-between-the-lines), and bio info at ( http://protomag.com/assets/online-medical-communities). I can honestly say the freindships, support, and information I've garnered from the computer is absolutely amazing.

Upon my return home, I received a call telling me that yet another young woman from my support group had passed away. It is very sobering to be planning for my daughter's next four years of college, or talking about Liam's future High School experiences, while the world around me appears to be falling behind. I know I need to remain focused on the main goal...longevity...MY longevity. But with each loss of a young life to this disease I am more and more inclined and empowered to make some noise. Hey, Newsday, what's with cutting me????? I leave you with a sentiment that was recently shared with me...if we could all look at life through these glasses, I think we'd all be a lot more happy, don't you?

"Life is not your jailer. Earth is not a prison. It is but a grand amusement park and you are afraid to ride the rides. Most times you are afraid to ingest the sweetness of the cotton candy of your life. It is too good, it is too sweet, it can’t be good for me, it can’t be lasting, it can’t eternal, and it certainly can’t be Godly.

Earth is not meant to be hard. Humanness is a divine point of origin. Life is a gift. Flesh is a gift. Air is a gift. You are a gift. People in your life come to you because you call them to you energetically, spiritually, psychically, and not randomly. There is no one that is in your life other than by your appointment. Love what you have created and let it love you. Honor what you have created. Honor whoever is in your heart, whoever is in your household, and whoever is in your life."

I love and honor you all, be well~
Colleen