The MCA BlogConnecting with others one story at a time
When I was diagnosed with mesothelioma, I felt more isolated than I ever had in my life.. I was a mere 36 years young and told I had an incredibly rare cancer that, in most cases, was diagnosed in much older men. I felt utterly alone and defeated.
Eight years ago, information on the Internet about mesothelioma was scarce, and everything I did read was so scary that I stopped looking. At that time, Facebook was still private, and any other resource I found never mentioned mesothelioma. I felt like no one knew what I was going through. Even my own doctor had never heard of a female getting mesothelioma, let alone one so young. Honestly, I didn’t know where to look for support. I was so overwhelmed with my diagnosis and everything else going on in my life. Having just had a baby, I was still wrapping my head around the idea of being a new mom, and now I had this monstrous battle ahead of me.
It wasn’t until I went to Boston to meet with the team at Brigham and Women’s Hospital at the International Mesothelioma Program that I realized there were people who understood what I was going through. At patient orientation, I met a wonderful man named Doug at an MRI appointment at 6:30 in the morning. When we found out we both had mesothelioma, we immediately exchanged numbers and emails and vowed to keep in touch. Our relationship was the inspiration behind the beginning of a patient match program at Brigham and Women’s.
Doug and I became fast friends. We started calling each other once a week to see how the other was doing, and to talk as time for our surgeries approached. Reunited in Boston shortly after I had my surgery, Doug was my first visitor other than my husband. He had his surgery a week later, and we recovered together. We forged a relationship that lasted through the ups and downs of the next 7 years.
Sadly, Doug’s mesothelioma returned and he passed away in October of 2013. My heart will forever hold him and his wife close as they are such an important and vital part of my life. It was my friendship with Doug that gave me the courage to seek out other patients to support, so they don’t feel like they have to go through it all alone, and to show people that cancer doesn’t have to be isolating. I reached out to the people of the International Mesothelioma Program and told them I would be happy to talk with any patient who was interested. Now, every time I go to Boston, I speak at the new patient orientation so these newly-diagnosed people can see that there is life after diagnosis. I also tell them to look around the room, and let them know that the people in that room will become family.
Soon after my treatment, I started looking for other outlets where I could meet and support other mesothelioma patients. I found out about the Mesothelioma Applied Research Foundation (MARF) through the twin daughters of a patient I had met in Boston. I happened to be in Washington DC with my mom for a business trip on a weekend when MARF was holding a mesothelioma conference. I decided to take a day and attend. Imagine my elation when I met dozens of other survivors! My eyes were opened to the world of long-term survivorship, and to this foundation that had so many people, like me, who were willing to share their story.
It was during lunch at that same conference where I met Linda Reinstein, who lost her husband to mesothelioma just after I was diagnosed. She, along with Doug Larkin, founded the Asbestos Disease Awareness Organization (ADAO). A fast friendship was formed, and through Linda I’ve met so many other amazing meso warriors. I always say it was Linda who gave me my voice and the courage to reach out to others going through this battle. I kept looking for more ways to make an impact; I wanted to reach other people who potentially didn’t know about these great resources.
The importance of having support of others who intimately know what it is to be diagnosed with cancer is something that another group I belong to is passionate about. Imerman Angels is an organization that utilizes mentors. If you find yourself diagnosed with a type of cancer, you call Imerman Angels, they look in their database, and set you up with a mentor who has had or is fighting your type of cancer. I joined to be a mentor about 2 years ago, and have mentored 3 patients through Imerman’s service. Talking to someone who has been down the path you are starting on takes a lot of the fear and uncertainty away. Knowing your reactions and symptoms are normal makes you feel normal, and much less alone in this battle.
The last 8 years have taught me that survivorship has its own set of rules and issues. Add being a young survivor to that equation and you have a double whammy. This is how I found out about Stupid Cancer. I did a radio interview and the gentleman who started Stupid Cancer was on it also; I was intrigued. He was an 18-year cancer survivor and talked about survivorship and its challenges and triumphs. Through the interview, I found out about local meet-ups with Stupid Cancer groups. I wanted to branch out and talk to patients with other forms of cancer. I believe we can learn so much from one another, and any battle is worth knowing about.
The local group is small, but we meet monthly at different venues throughout the city. All of us have different diagnoses -- breast cancer, esophageal cancer, Lymphoma -- and each individual has a story and experience to share. Friendships are formed on a much more foundational level. Instead of trivial questions, we get right to the hard stuff. But we’ve all been there, we know. There is no need for small talk. Peer support can spill over into other areas of life too, and common interests are discovered. I’m trying something I’ve been talking about for years with a woman I met at a Stupid cancer meetup -- we’re going stand up paddleboarding together! She is helping me do something that I would have never done on my own.
I’ve learned in my last 8 years of this journey, that the people who are in it with you can make all the difference in the world. Having people who know and understand your emotions during your cancer journey is life changing. A whole new world was opened to me and I don’t feel so isolated and alone anymore. I urge you, if you are going through any type of issue, whether it be illness, loss, postpartum -- anything that throws you a curveball in life -- find others who have walked your path; you will not only find help, but friendships that will last a lifetime.
Resources for Mesothelioma Patients and Their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center