News from the Back Deck 10-22-09

You know how in the old story “A Christmas Story” when Scrooge sees the ghost of Christmas future and it scares the heck out of him and he vows to change the future? I ran into my ghost of Christmas future this past Friday night…and my reaction was pretty much like Scrooge’s.



As I’ve shared many times, Liam is our resident David Cassidy (THE teeny bopper pop star of all in my book). He was chosen to participate in Sayville’s version of American Idol Friday night. Liam is my rocker—loves to listen to the classic rock station. He gave it some thought, and decided he was going to bring the house down with an old Styxx song (Renegade). The night of the big event was upon us…the Middle School was filled with hormonal teens…the inside temp must have been one hundred and ten degrees. The kids poured into the auditorium and rushed the stage. You could literally feel the bass in your heart the whole time.



Liam wailed out a version of the old tune like none I’d ever heard before…gave it all he had and did it well…but the crowd was much more interested in Miley Cyrus or Taylor Swift. At intermission, we all spilled into the lobby area to catch a breath. All of a sudden, my eyes rested on a woman standing in the lobby…she had the pallor of someone who was very sick, her eyes had a distant emptiness, she was sporting an oxygen container that was affixed to her side, and had tufts of dark hair. At first sight she looked like a little old lady. But something about her drew me, and I looked at her more closely. Good God, I think she was my age. And there was a man helping her that looked like he could indeed be Eric’s age. This woman, obviously in a great deal of physical discomfort, knew it was important to one of the children that she be there and so she was. It may be one of the last things she does in this life, but she was there.



As she tried to get out of the crowd’s way, I looked around and realized not one other person could ‘see’ her. There was a woman literally dying in our midst…and nobody but me saw it. I empathized with that woman—because sometimes I too feel like a person who is dying in the middle of a crowded theater. I’m dying over here…can someone toss me a life line, please? I mentioned it to Eric the next day, and he hadn’t seen the woman, but was quick to assure me we had no idea what was wrong with her. Yet I know—I saw the same look on my dear friend Carole, while I helped carry her oxygen tank. I’ve seen the look in any late stage cancer support group I’ve attended. I know that that is my personal ghost of Christmas future, and I need to hold on to anything that can convince me the future can be altered, which is why I’ve morphed into super advocate.



I had the opportunity to go into New York City on Monday to participate in a ‘lunch and learn’ program that Pfizer was sponsoring on metastatic breast cancer. Musa Mayer—a super star in the breast cancer community--was presenting the results from a new international survey that has been initiated that focuses on metastatic patients. It’s called the Bridge survey and you can check it out at bridgembc.com (I was chosen to be one of the personal stories). What they’ve discovered is women with metastatic cancer don’t feel like they are being heard; they don’t feel a part of this overwhelming community of breast cancer survivors. I was at the luncheon as a sort of ‘this is what it’s like to walk in my flip flops’ speaker. But it was more than that to me—much more. It was my opportunity to stand before a room of scientists and oncologists who have their hands on the future—MY future and my family’s future--and plead with them to help me chase my ghost of Christmas future. I think they got the message. Several of the oncologists came up to me after we were finished, shook my hand, and told me what a difference it was to be up close with a mets patient when they are usually levels apart. I do believe the world is on the edge of a huge change in treatments—and that if I can just hang in there, a cure will be part of Christmas future. But, in the event that’s not the way my story is to be written, I take comfort in knowing that perhaps my efforts will help another person who walks behind me…perhaps my squeaky wheel will help to get other people’s wheels greased.



“If you’re not part of the solution, you are most assuredly part of the problem.”



I love you all, be well~

Colleen