Jose Rodriguez had a routine CT scan on a Friday. He received a call about it just two days later. They thought they saw a small tumor on his scan. Since he had had no symptoms, he was blindsided by the news.
“My pulmonologist started asking questions about symptoms and finally I asked him if there was something wrong. He thought there could be but because it was my birthday he didn’t want to disclose. Finally he told me he thought I had a small tumor.”
“I asked him if it could be lung cancer and he said that it could be. He set me up for further testing.
He said he would get back to me but I felt like there wasn’t a lot of communication going on between all the doctors and all the people performing the different tests. “
“I took advice from my boss who placed a few calls and found someone to help me out. I had a bronchoscopy on Wednesday and a pet scan on Friday. Then the waiting began.”
“When I got results that it was in fact lung cancer, no one really explained to me the process of staging or what would come next. I was connected to Dr. Nana-Sinkam, who talked to me by phone and gave me the basic information on what I was going through and what to expect. He painted the bigger picture for me,” explains Jose.
Sharing the news to friends and family that he had been diagnosed with lung cancer was hard for many reasons. Jose believes there is a stigma associated with lung cancer and lots of questions.
People ask how or why you got it. They want to know what the treatment options are and always want to know what comes next. Jose found explaining it to others was difficult since he himself was lost in the process.
“I didn’t really know what to explain, the process was huge. It took a long time to get definitive answers. Even today, two and a half years later, there is always an upcoming scan. You never get away from it. It’s always right on your back. Even as fortunate as I am today there’s no certainty about my health or that lung cancer won’t ever come back.”
What helped Jose cope was finding LUNGevity online. Jose wanted to find others who were facing the same challenges that he had. He had found an in-person support group but it was very small. Only four people belonged to it. He was looking for a larger forum to connect with others and become educated about the disease, be supported in his fight and eventually he knew he would want to make a difference for others.
“I found out about LUNGevity HOPE Summit by going online. I found a great opportunity to come meet other people who were facing the same challenges to what I was facing and I registered for the summit and applied for the travel grant to get to Washington D.C. right away!”
The three biggest things Jose says he took away from HOPE Summit:
1) “I got hope! No doubt about it. The name is the best descriptor of the conference.”
2) “I got connected! I felt like I was no longer alone. Lung cancer is such a lonely disease.”
3) “The third thing I got was information. I got critical information about lung cancer for my health and survivorship.”
Jose got so much out of his experience at HOPE Summit that before the event was even over, he approached LUNGevity about bringing a conference like the HOPE Summit to Ohio.
“I know that lung cancer is the number one killer of central Ohioans. More people in my region die of lung cancer than any other illness. Given the number of people that come looking for support I know people are dying in the dark. If you look at other diseases, they have the support that they deserve and lung cancer simply does not. So I had a big dream that LUNGevity would consider bringing the summit to Ohio.”
The first LUNGevity Regional HOPE Summit is being held November 9, 2013 in Columbus, Ohio. Jose has been critical in facilitating the conversation between OSU and LUNGevity as well as encouraging LUNGevity to reach out into the local community to connect with lung cancer survivors, experts and support organizations.
The summit is a conference for lung cancer survivors of all ages and stages of disease, in or out of treatment. All conference sessions, speakers, access to exhibits and meals during the conference will be provided to all participants at no cost. Registration is required to reserve space and meals.
The LUNGevity Regional HOPE Summit begins Friday, November 8 with an evening welcome reception. The conference itself is on Saturday, November 9.
Jose didn’t stop after getting LUNGevity to agree to come to Ohio. He also volunteered to coordinate a 5k walk to encourage people to invest in research that will ultimately save lives. Breathe Deep Columbus will be a community-wide event to raise awareness and funds for lung cancer research.
The Breathe Deep Columbus event is on Sunday, November 10, the day after the HOPE Summit, making the weekend of November 8-10 an entire weekend to recognize and celebrate people impacted by lung cancer.
“Together, I hope we can build a local community of support for people impacted by lung cancer. We cannot forget that research is the key. The investment in research is what has made tremendous advancement in survival rates for other cancers. It’s past time we made a difference against the deadliest cancer killer,” says Jose.
Registration to the Breathe Deep Columbus event is free for lung cancer survivors.
To register for the Regional HOPE Summit, please visit www.lungevity.org/regionalsummit.
To register for Breathe Deep Columbus, please visit www.lungevity.org/columbus.