The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Robbie and John's Story.
- Robbie and John are both patients here at the Mass General Cancer Center. Robbie and John have decided to face the challenges that come with each of their diagnoses’ together, while prioritizing what’s really important: each other.
- "With both of us having cancer, there comes a deeper relationship. It’s different. It’s not ideal, but it’s all good in a way… in ways you’d never expect."
Robbie: "I got my first diagnosis in early 2012, I started with stage zero breast cancer, DCIS. It’s supposed to be easy-peasy, but then the big one came in mid-2013. I was diagnosed with breast cancer on the left side. I had a tumor the size of Texas. They didn’t even catch that when I was being treated for my DCIS. The second diagnosis was stage 2, estrogen receptive breast cancer. Big surgery, radiation, chemo, hormone therapy. Then in 2014, John got diagnosed with multiple myeloma."
John: "While Robbie was going through all that, I got diagnosed with bone marrow cancer. In the middle of 2014, I started chemo. After one-and-a-half to two-years of that, since early 2016, I’ve been fine."
Robbie: "He makes it sound easy, but he had a stem cell transplant. He was in the big house (Lunder), and now gets checked every month."
John: "It’s the type of cancer that almost always comes back. I can get it checked in Florida, where we live now. To continue her story, hers has metastasized, unfortunately, after four years. Her cancer has spread to other places and she’s been coming back up here to her original oncologists. We’re better off coming here to get that treated."
Robbie: "We’ll probably be coming up here for the long run. I’ve had spots on my bones, on my liver. They’re keeping us alive. We’re everyone’s worst nightmare, but we’re living it. It’s all good. I don’t think we’d still be here if it wasn’t for Mass General. You don’t get the same kind of care elsewhere. The specialists are here, and with our types of cancer, it matters that there are specialists here."
John: "There are three multiple myeloma specialists here at Mass General. The closest specialist to us in Naples is in Tampa. It’s a three hour flight to Mass General or a three hour drive to Tampa. Why not come here? We’ve come to like Boston a lot. We’ve been here over 50 times for my chemo alone."
Robbie: "When he had his stem cell transplant we actually got an apartment in the West End. At that time, his diagnosis was sort of worse than mine, now the tables have turned."
John: "They don’t know too much about this disease. I’ve gotten used to waiting. I get a little anxious around this time of the month before I get my blood drawn. I’ve had pretty close to 4 years of no cancer, and I’m sort of expecting that to continue. I’m hoping I’m one of the guys that goes 20 years with no recurrence."
Robbie: "Things are changing so quickly, I hope I can say the same. I’ve had the whole “spa treatment” here: chemo, radiation, drugs, surgery. His bone marrow transplant was pretty intense too. We could give tours of the hospital, the healing garden, the cafeteria. We’ve been just about everywhere in the hospital. We’ve covered a lot of ground. We hope to inspire other people. We know it sounds bad, it doesn’t sound great and it wouldn’t be my first choice. But you can get through it, you can keep going. I’ve run into lots of people in my situation and they’ve helped me. You get to meet people that you may have never met. You get experiences that you may not have gotten otherwise. This is our everyday life now. I am inspired with what they’ve been able to do with my diagnosis. I’m interested in the advances in breast cancer. Now, I realize it does define me, but I’m ok with that, that’s a good thing."
Robbie: "2014 was probably our low point. We downsized our lifestyle, we downsized our life. There is a lot of admin stuff that comes with cancer though. The incredible cost of things. As soon as we moved and I just had one little place to worry about, I realized how much easier that was. We really simplified. We’re going to keep simplifying. It makes us happier."
John: "This cancer thing, if you give it a chance, can be pretty depressing. You can end up feeling sorry for yourself. Especially when you multiply it by two. It’s very difficult to deal with mentally every day. But you do. You manage, but there’s a ton of paperwork, it takes a lot to manage your healthcare. Some drugs are expensive, and sometimes it’s not covered. It’s stressful."
Robbie: "We just do things differently now. I just saw a bunch of my docs who I haven’t seen in a while. You surround yourself with positive people, like my doctors here. You laser focus on the good."
John: "We’re trying to come up with a bucket list, but we have two different lists. I’d rather go fishing, and she’d rather travel around and visit all of her friends. We're trying to decide what we want to do."
Robbie: "We’re trying to get me stabilized and then go from there. You have to learn how to say no, to know your limits. Everyone is understanding. You prioritize. Before my diagnosis it never dawned on me to take a nap in the middle of the day. Now, if I’m tired, I take a nap. It forces you to look at your relationships and you figure out who your friends are. With both of us having cancer, there comes a deeper relationship. It’s different. It’s not ideal, but it’s all good in a funny way, in ways you’d never expect."
John: "I never thought it would happen to me, let alone both of us. Other than this, we’re the healthiest people we know. If I had other physical problems, we’d be in worse shape. We’re both in good shape regardless."
Robbie: "We’re pretty optimistic. I mean you have your bad days, your meltdown days. I like to be inspiring to other people. It gets better over time. For people who are newly diagnosed, it’s helpful to see other people out there, five, seven years out and still going."
John: "It takes a long time to accept and live with it. Sometimes I still don’t believe that I have it. I don’t feel sick. I never felt sick, never had any symptoms. I was lucky to find it. I’m still not sure sometimes if I’ve accepted it. But the myeloma patients are living a lot longer. The two of us are great examples."
Robbie: "In Naples, they are trying to become a “Blue Zone.” There are a handful of places across the globe that people live to be over 100 regularly, and they are called “Blue Zones.” We decided why not live there; the weather, the activity, the quality of life we have there is great. Of the time we spent in Massachusetts compared to Florida you can see that the standards at Mass General are superb. The technology, the advancements here are incredible. Don’t delay in your health, stay on top of it, stand up for yourself."
With both of us having cancer, there comes a deeper relationship. It’s different. It’s not ideal, but it’s all good in a way… in ways you’d never expect.
This interview was conducted in December of 2018 and has been edited for clarity.