Close
Transcript
Michael and Robin Tuohy
Michael Tuohy (MT) Our whole life has changed because of being diagnosed with multiple myeloma. When I was diagnosed, I didn’t know what it was. I had never heard of it, as well as you. You didn’t know what it was, and we didn’t know the first thing to do. Fortunately, you got online and started researching and that absolutely set us in the right path.
Robin Tuohy (RT) Once we did find the International Myeloma Foundation’s website, and I got to read all the information, what the right questions to ask were, what the right tests to have were, it started to make us feel a little bit more powerful and informed. So when we did go into the doctor’s office, we had a better idea of what we really needed to discuss with them so we weren’t just patient-caregiver, but we were partners.
MT: Knowledge is power. That’s always been their slogan and it’s absolutely true dealing with this disease and our world just grew from there. You were writing a letter to our congressmen. The next day you got a call and I come home from work and you said, “We’re going to Washington, D.C.!”
RT: Guess what honey? Pack your bags!
MT: And that trip there was really what got us involved and all this, what we do today.
RT: I think it changed things for both of us. I think it made us feel like we need to be involved and not just for us, but for everyone who has myeloma because we still had not even met another patient. And this was probably six months after you were diagnosed.
MT: I had never met a myeloma patient until we came to Washington, D.C. and it was loud in there.
RT: And patients looked good and they had good stories, it was so important to tell the world about myeloma to make sure more research was being done and funding and all of that. And you had this crazy idea one summer.
MT: The Myeloma Mobile. When we were in New Hampshire, up in the White Mountains, kind of away from everything, I thought, “What do people up here do for information for multiple myeloma?” And then we came up with the idea of, “What if we got like a camper or something and filled it with all the IMF’s materials?” So, the four of us, and the dog and the cat, just went across the country.
RT: And it was an amazing thing. Here’s a 35-foot RV, wrapped with all the logos because we ended up going to, I think, 20-something different cancer centers, and then we stopped at all these little support groups. Being the big Red Sox fan that you are, it was pretty cool how we started off.
MT: Yeah, at Fenway Park. They brought us out on the field, and told the whole stadium our story. What multiple myeloma was, so that was our whole idea of the project, was to create awareness.
RT: We’re actually seeing the future that we were so afraid of. That’s what makes me feel so good. That we’re growing older together, the kids are seeing you and learning from you, and you were able to coach Mikey, and be at Ally’s track meets and piano recitals, and all the things that make life beautiful.
