Michael Riotto 

People often remember the day of their diagnosis vividly, even if it’s years in the past. What do you remember?  

I was diagnosed completely by accident, after a day at the Jersey Shore. It was my first day off in a long work stretch. My son asked me to go to the beach. There I was, at 51, trying to keep up with my teenage son and his friends. In the surf, I was tumbled by a wave and injured my neck. It hurt terribly.

When I came home, my lovely wife, Monique – who has been an incredible support all these years, I wouldn't be thriving today without her support – said, “Maybe you should go to the ER.” I said, “I’ll be alright.” Typical man response. But by the next morning it was much worse.

I got an X-ray that showed I’d fractured my C4 and C5 vertebrae. They told me I had to transfer to a bigger hospital. I wanted to drive myself, but they insisted I go by ambulance.  

In the middle of the night, an attending doctor comes in and says, “Your bones are moth eaten.” {As a result of myeloma interfering with normal bone repair function}

At 6:36 PM the next day, another doctor told me definitively, “You have myeloma.” Three seconds later, his beeper goes off; he leaves!

A nurse came in and asked me, “Do you understand what he just told you?” She printed out all this info and gave it to my wife and me. We read it together, at the same time: I had a five-year life expectancy, or less.  

Ultimately, your multiple myeloma was successfully treated with an autologous transplant, in December of 2011. Can you describe what you were thinking or feeling as you entered transplant, and as you began to recover?  

Before transplant, one of my doctors told me, “You might live three months. With induction therapy, maybe you’ll get a little longer.” I had 24 really rough days in the hospital during the transplant.

On Day 5, I went septic and was sent to the cardiac care unit. On my second day in the cardiac unit, they told my family to come visit, there was a serious chance I would not make it through the night.  

Thirteen years later, you’re not only healthy, but strong enough to be a highly effective advocate for health care legislation. What do you attribute your wellness to today?  

I’ve learned over the years to take care of myself a little bit better. I’m 64 now, and in an “active observation” stage, with little to no signs of disease. But I still have big gaps in my bones, so I have to be careful.

I’m a big believer in diet as the key to health. In 2018, I started eating healthier and working out. I lost 44 pounds and put on a fair amount of muscle that I’m happy with. All that was to eliminate my bone pain. My docs said if you strengthen your muscles it will help with your bones.

Also, I have the world’s worst sweet tooth, but I try to behave. I ‘eat clean’ as much as I can. I think: If I take care of myself, I’m going to live longer and be able to take care of my family and friends too. 

Have you received any unexpected gifts from the experience of illness?  

Many years ago, I met my best friend Tony through this journey, at an International Myeloma Foundation (IMF) conference in Charlotte, North Carolina, where he lives.  Tony joined the program I was working on — Multiple Myeloma Journey Partners. We traveled around the country and went to conferences and shared our stories about myeloma, transplant, and survivorship. These days, Tony and I are called the dynamic duo {within the advocacy community}.  

We realized we had a whole lot in common. It's incredible to have someone else out there who knows what you’re going through, and what you’ve been through. We FaceTimed through COVID. And we started taking our annual “F– Cancer” trips. We’ve done one every fall since 2021. We take a week away from our spouses and partners and go somewhere beautiful – Portland, Seattle, Aspen – and we don't talk about myeloma and treatments at all. 

Tony also helped me change my diet. He’s a certified nutritionist, he eats really really clean, no gluten or dairy. I started to adopt his regime in July of 2022; by late 2023, I was off all pain and inflammation meds. I’m also a huge believer in vitamins and supplements, all doctor-approved of course! Being able to get rid of gabapentin and Celebrex was huge in my life. Gabapentin makes you groggy, slows you down, I have more energy now than I ever had! His friendship and support are unmatched.  

Can you talk more about your advocacy work? How did it begin and what drives you to keep going?  

In 2014, the Leukemia & Lymphoma Society  approached me to say – Would you come to Harrisburg, PA to tell your story about the pain of co-pays? We were spending something like $200 to $400 per month, at that point. And I was still working. It definitely hurt the family…

Every year since diagnosis, we’ve paid between $12,000 - $14,000 total out of pocket for uncovered expenses. For a family that means things like no new bikes, no family vacations. It was a lot to give up. My kids {Christina and Theo, now young adults} sacrificed a lot to keep dad alive. Would they change it? No! But it wasn’t easy. I wanted to tell that story, and help change that story, for other families.  

Subsequently, LLS invited me to travel to Washington DC to tell my story nationally. Eventually other groups see your advocacy talks and want you to tell your story for them too. Over the past years, I’ve volunteered for many organizations all focused on supporting access to care {for under-served communities}, affordability of care, and research progress. Today I am focused on working with the IMF on building their grassroots advocacy program to improve the lives of all myeloma patients through critical changes in access, affordability, and research. You can join our efforts at advocacy@myeloma.org.  

Sometimes I advocate for selfish reasons, maybe a law will change that will help me. But deep down, I do it for all those patients who can't, won’t, or are simply unable to. I share my voice for them.

There are myeloma patients all over the country who can’t travel, and yes you can do some events virtually, but in-person meetings give you the chance to watch your congressperson truly listen across the desk from you. Me, an ordinary guy from Pennsylvania, can go to DC to represent our cause, and make change. That is huge and so impactful.  

Have you seen the kind of change that you’re working for happen?  

Well, it’s easy to get disillusioned with advocacy work, because it can take years. Nothing gets done right away; there’s so many invested parties involved, so many factors in how a law changes. But if you stick with it long enough you can see true change. It fuels my soul, it re-energizes me.  

One example of our success is the “No Surprise Act.”  It’s a win for people. Now doctors’ offices must tell you in advance if they are in or out of network before you receive care. Medicare Part D reform is also huge! It caps spending on Part D prescriptions to $2,000/year, starting in 2025. Some people who were paying $6,000 or $8,000 a year in co-pays are now capped at $2,000. For a low-income patient with a rare cancer disease, this is a huge win. 

Has transplant, and the advocacy work you’ve done since, inspired any long-term changes in your mindset?  

I’m a happy guy, that’s just me: live and love every day. I try to be as friendly as I can. 

My wife calls me anti-confrontational; there’s not a whole lot that bothers me. You can cut me off in traffic, or the grocery line, I won’t be bothered. I just want to smell the flowers. If I wake up, I’m a happy guy. 

Recently a  fellow Health Tree coach came up to a group of us and said: “Guys, I have a question for you. If I could cure your myeloma today, but you couldn’t talk with or associate with anyone you met along the way ever again, what would you do?” It took only seconds for all of us to say we would not give up our myeloma if it meant giving up the amazing people we’ve come to know along the way. Like Tony, and Susan and Marla {of BMT InfoNet}.  

Also, I love being a coach and a mentor, it brings me joy to help people. I always say, if I can help one person navigate this journey better, I have done a good thing.  

The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.