Reflecting on September’s Mesothelioma Awareness Events and My Biannual Checkup

Heather Von St. James at Miles for Meso awareness event

September always proves to be a busy month for me, and this year was certainly no different! As much as I try to pace myself, it always seems as though all the things happen at once. September is usually busy for one important reason: Mesothelioma Awareness Day.

Every year, throughout the month of September, friends from all over the country involved in the mesothelioma community have different fundraisers to support the nonprofits that in turn support us. The Mesothelioma Applied Research Foundation and the Asbestos Disease Awareness Organization count on these fundraisers during September to help further their cause, and it is always an honor to be involved. I have to pick and choose which events to attend or I would be travelling every weekend for a different fundraiser! While I might enjoy that, my family might get a little tired of me being gone every weekend.

Like last year, I chose to go to the Kayaking 4 Meso event in Mechanicville, NY, and the Miles for Meso Race in Alton, IL. And because I wasn’t busy enough, I had an appointment in Houston for my biannual checkup right between the two events. What is one more trip when you are already packed, right?

Kayaking 4 Meso

Kayaking 4 Meso is a totally unique event started by my dear friend Mark Wells in honor of his daughter, Linda, a 16-year mesothelioma survivor. It started out to bring awareness to mesothelioma when he, along with two other people, kayaked 16 miles down the Hudson River. One of the people that did the original trek with him was Patti Turi, who at the time was also battling the same cancer. Sadly, Patti passed away earlier this year, and her presence was missed. The event was dedicated to her this year and her memory honored by each one of us.

I, myself, do not kayak in the event. Mark is thoughtful enough to provide a survivor pontoon for those of us who cannot kayak, but wish to be on the river with all the supporters. Every year, a volunteer offers up the use of his pontoon boat, and survivors in attendance float down the Hudson River along with the hundreds of colorful kayaks. It is a sight to behold. I believe over 200 of them were on the river again this year! Over $20,000 was raised for the Mesothelioma Applied Research Foundation this year, bringing the total raised from this event to over $85,000! That is an incredible feat!

Mark, I am so proud of you and all your support for the meso community, and involving me every year in this incredible event. The work it takes to pull something like this off is immense, and I am in awe of you!

Traveling to Houston

After the kayaking event, I flew home, only to leave the next day for my checkup in Houston. I was already exhausted, and was very thankful for an uneventful flight and an early check in to the hotel. Every trip to Houston, I try to meet up with other patients that are either there for appointments or live nearby, and this trip was no exception. It is always an honor to meet other patients who are either newly diagnosed or recently out of surgery. It is my hope that by meeting with them, they too will join in the community and get to know other patients. We are all stronger together!

I’m not going to lie, I was nervous about going there so soon after the epic flooding that had happened just 10 days prior. I have come to love Houston and its people, and was really worried about what I would find when I arrived. I didn’t notice much difference once I was on the ground, but from the air, I could see where the floodwaters had been and where a lot of water was still sitting.

As we drove to the hotel, my driver told me that he had lost a few of the cars in his fleet, but half of them were ok. His office, however was a total loss. He was trying to decide if he was going to find a new one or just operate from his home. Many decisions to be made for many of Houston’s citizens.

The hotel I always stay in was spared, as was the Baylor Medical Clinic. One block over, however, all the businesses were shuttered and there was no indication of when they would reopen. Many of the staff at Baylor had lost everything, while others were left unscathed. Everyone I spoke with though was very optimistic and thankful for the community they live in and the overwhelming support from all over to help them rebuild.

I’m happy to say that my scans look good, and I get another six-month reprieve.

Miles for Meso

The other event that I love to participate in is the Miles for Meso race in Alton, IL, hosted by Simmons, Hanly and Conroy, where all proceeds benefit the Asbestos Disease Awareness Organization. This was my fourth year attending and as always, I am absolutely blown away by the magnitude of the event and the ease at which they pull it off. I guess after organizing the event for 9 years they know what they are doing!

This year was the biggest ever with over 1,000 participants! In past years, I too have walked the 2K route with scores of other people, but this year I had to sit out because of some breathing issues. It was so fun though, even watching all the people gather for this annual event. Being there to represent ADAO is always an honor and I am proud to help in any way I can.

I believe the final tally for monies raised was over $35,000!! It makes me happy to be a part of something that not only helps my friend Linda Reinstein’s organization, but I know that the money will be used for vital asbestos education and help in finally getting this horrible substance banned once and for all.

Next September, I urge you to look around your area, and see if there is a mesothelioma event taking place near you! You can find a list of events on the Mesothelioma Applied Research Foundation’s web page, or contact me and I can help you find one. Who knows? I may see you there!!!

In the meantime, there is still ample opportunity to raise awareness and tell people your story about how asbestos has affected you. There is great power in your story, and that is how awareness happens, one story at a time.