Mesothelioma Awareness Day – In The Company of Hope logo

It was upon attending the Mesothelioma Applied Research Foundation’s annual Symposium on Malignant Mesothelioma back in June, that I first learned of Mesothelioma Awareness Day and the foundation’s plans to descend on New York City in September. As a survivor of the disease myself, the idea intrigued me but I didn’t really think it was going to be realistic for me to go.

The more I thought about it, the more the idea grew on me. Why not go? I would be with other mesothelioma patients, their loved ones, MARF staff, and Union members all there to bring about awareness for this disease. I called my mom, and she jumped at the chance to go and spend the weekend with me in NYC. So this way I wouldn’t be here alone. As the date grew nearer, airline and Broadway show tickets were bought and hotel reservations were made. We arrived in NYC on Saturday and had plans to see a couple of shows before getting together with The MARF staff and other participants.

We thoroughly enjoyed the shows we chose, Priscilla, Queen of the Desert on Saturday night, and Wicked on Sunday afternoon. We left straight from Broadway, jumped onto a rickshaw and made our way the 8 blocks to the MARF sponsored dinner. When we arrived, the staff was there to greet us, as well as many people I had met at the Symposium in June. Within the next 20 minutes we filled the back room of the restaurant with people all there for one cause.

I loved that my mom got to be a part of it, and see this part of my life. She now wants to do what she can to bring about more awareness where she lives (she thought she was just tagging along to see some plays!). A highlight of the night was a check presentation for $10,000 for MARF from the proceeds of a 5K-walk/ race that was held earlier this week. What a great kickoff for the start of Mesothelioma Awareness Day. We made a plan to meet up the next morning outside the Today Show at 5:30 a.m. T-shirts were distributed and we all said our goodnights.

The alarm went off at 4:30 a.m. Whew- is that early! I didn’t have trouble waking up, though. I was excited about the morning, wondering how many of us were going to be there, and it was just cool to be going to the filming of the Today Show. Mom and I walked the few blocks from the hotel to Rockefeller Center, and quickly found our group of meso warriors (as we affectionately refer to ourselves!) and got in line to wait for the signal to go stand around the fence on the Plaza. We waited for about an hour and a half, and in that time, our numbers grew from about 7 or 8 of us to over 50! 50 people were wearing bright orange, with the words CUREMESO.ORG across the front of our chests. What a display of solidarity!

The signal was given, and we made our way to the fence, front and center. There we stood all around the fence, a wall of orange shirts with Cure Meso banners, and flags. We waited then for the hosts of the Today show to come out. We knew we would have at least a couple hours of standing there, but it was a truly festive mood surrounding all of us.

Our wait was over when the doors opened and Ann Curry, Lester Holt, and Al Roker came out and stood right in front of us. From what I gathered, a lot of friends and family saw us in the background with our banners! One of the highlights was having Al Roker come out and talk briefly with some of the people from MARF, and then give a plug about Mesothelioma Awareness Day. Another highlight was seeing Jennifer Garner as she walked around gathering school supplies for the needy (unsurprisingly, she is just as stunning in real life as on film). Before we knew it, it was over, and time for the meso warriors to go our separate ways. We gathered for a group picture, and after, said our goodbyes.

My mom and I ended our day by visiting Ground Zero. I guess I didn’t know what to expect. I have not been to the World Trade Center sight since 1996, long before the towers fell. My mom had been there 9 years ago, almost 1 year to the day after September 11th, 2001. For her to see the progress was amazing, but for me to see how different it was, was strange. There were literally thousands of people milling around, but getting into the actual site was not to happen. What I didn’t know is that they only let a certain number of people in a day, and tickets must be bought far in advance. We just walked around the perimeter and went to the preview sight. I looked at pictures from that fateful day, and all I see is the dust covering all those people. Before meso entered my life, I may have seen something different. Now I see the dust, and am waiting, as I am sure are they, to see what happens with the health of all those incredible people who responded on September 11th.

It’s always bittersweet saying goodbye at things like this. The thing about mesothelioma, or any cancer really, is you just don’t know what is going to happen. You say goodbye, send your new friends on their way, and pray like crazy you see them next year. Your heart is just filled with love and compassion for the people who are fighting this disease, and for their caregivers who were there in the absence of their loved ones. Your heart grows by leaps and bounds with every passing year, seeing people who are winning their own battle with illness, while the heart breaks into a million pieces when you hear that someone succumbs to the disease. Just when I don’t think I can take anymore, I attend an event such as this and meet more incredible people. It restores my resolve to keep fighting, to keep bringing about awareness and to keep spreading hope.

So I’ll continue to do what I do- help bring about awareness and continue to share my story. Mesothelioma is a horrible disease, yes, but there is hope, there is information and we are doing all we can to work toward a cure.

Put September 26 on your calendar next year, and join us again, on the set of the Today Show for Mesothelioma Awareness Day!