25 Years With Multiple Myeloma: Michael & Robin Tuohy’s Journey of Hope and Resilience

- My name is Michael Tuohy. I am a 25-year multiple myeloma patient as well as a patient advocate.

- So I'm Robin Tuohy. I'm his wife of 36 years this year, and 25-year myeloma care partner. And I also am vice president at the IMF of patient support.

- For me, it was back pain right off the bat. I had such excruciating back pain. I got to the point where I went to an orthopedic doctor and they decided they wanted to send me for physical therapy. So fortunately, we kind of asked the questions, you don't know what's wrong with me, why are you sending me for physical therapy? So I went to another orthopedic, sent me for an MRI, I got a call at work the next day saying I had a tumor in my sacrum. So I was sent to New York, and fortunately, right off the bat, I was sent to a myeloma center, which was a godsend for me.

- Yeah, but it did take three orthopedics to get through that.

- Yeah.

- And like most patients, it does take some time and you just have to persevere. And if you don't feel like something's right, you need to use your voice and speak up or do something that you think is right.

- It was a process because of my age, they did not think it was multiple myeloma. So basically, it told me it was gonna be a surgery to repair it, but the problem was, they had to do a biopsy first. So I got a call from the doctor, saying, "Well, it's good news. We don't have to do the surgery, but I'm sending you to Weill Cornell," which is a multiple myeloma center. So that's the first time I ever heard of multiple myeloma. Total rollercoaster, especially the first 15 years for me were not easy, and my family was my strength. I just wanted to be with them, because initially, we thought two to three years was life expectancy. So every waking chance that I had, I wanted to sit on the couch with my two kids and my wife and just hold them, because I didn't know how long I would be here. My son was two years old when I was diagnosed, and I thought, "He's not even gonna remember me." So it was basically family was everything.

- And we had a lot of special moments, though. And when we talked to the kids, we tried to make it age-appropriate, because they knew we were going on a lot of doctor's appointments, which is not normal. And when they would ask, we would just say, like, for our son, "Oh, no horsey back rides for daddy, his back hurts, and that's why we're going to New York." And our daughter who was seven at the time, you know, she was a little smarter. And at one point in time, she said, well, first we always used the words multiple myeloma, 'cause Michael's dad passed away from cancer. And we didn't want either of the kids to think, "Oh, cancer, grandpa died of cancer, daddy's gonna die of cancer." So we always said the words multiple myeloma. And then one day, Allie asked us, "Is multiple myeloma cancer?" And we happened to be making cookies. And I don't know how I thought about this, but I said, "You know, cancer is like cookies. There's lots of different kinds of cancers, just like there's lots of different kinds of cookies. So yep, daddy has multiple myeloma and we'll let you know what's going on." So we learned as they grew up and became adults that they said, "That was so helpful to us." We didn't even know back then how helpful it was, but they would've thought something was really wrong because our routines were different. Things were just happening.

- Mm.

- And even though we tried to keep things light, I guess being honest, but age-appropriate, turned out to be a good, helpful ting.

- Oh, definitely. Yeah.

- Yeah.

- To be able to be here 25 years later, and to be able to reach out, it's a passion for us to help patients. I mean, the first patient I ever met was Mike Katz, who became a dear friend of ours, and was an amazing patient advocate. He set the example for us to follow. So that's what we do. We wanna help as many patients as we can, 'cause there's a lot to learn in this disease. It's, you know, it's changed. The landscape has totally changed since when I was diagnosed. There are not many treatments, but now it's a plethora treatments.

- There's so many silver linings in myeloma. And Michael has always taken the high road, super resilient, always trying to be upbeat, but realistic at the same time. Because obviously, myeloma is not an easy disease. It's very individual. So we chose that knowledge is power.

- Absolutely.

- And the more we learned and the more we got involved with the IMF, the better, not only did we feel, but we can help other people by sharing our experience and talking to them from a patient and a care partner perspective. But I think your resilience and your staying true to who you are and helping others, that really always made me feel strong about you.

- The reason that we got involved with the IMF is Susie Novis called Robin and said, "I want you to go to Washington to be an advocate." And so that's how we got involved. And after that they said, "Hey, how about starting a support group?" And initially, I was like, "Ah, I don't need a support group, I have my family." And they talked us into it, and we started the first support group in Connecticut. And it's still going strong.

- And I think that that's something a lot of people feel because they hear the word support group and a vision comes in your head. "Oh, they're sitting around in a circle and whining and complaining."

- And crying, yeah.

- And so when we started our group, we thought, "Okay, we're gonna call it the Multiple Myeloma Fighters Information Group because that sounds empowering. And just the name of that group, we hoped that people would come into it, not with the preconceived notion of sitting in a circle. And now, as support groups have grown across the United States, I would say every group gives support, of course. But it's about information and sharing experiences learned for best practices, and what are the questions I should be asking? We were doing shared decision making before it was even a term.

- Yeah.

- So now we kind of laugh and we say, "Huh, that's what that is."

- Our faith helped us get through this. I mean, when you're 36 years old and you're basically looking at two to three years life expectancy, you look for your faith. But my family got us through this, that and the International Myeloma Foundation. If we didn't find the International Myeloma Foundation, I honestly don't know if I'd be here. We were very fortunate, 'cause it taught us how to be an empowered patient, you know, start a support group to help other patients. You know, and the best advice we ever got was, "When you're doing well, that's the time when you could help a patient in your support group." That's not when you take off and leave, that's when you stay to help the next person that's coming in with their deer in the headlights. So it's strictly about giving back.

- You know, it makes me think about, I joke sometimes that it's not myeloma, it's our-loma.

- Yeah.

- And myeloma is a bone, you know, disease, but the IMF gave us the backbone.

- Yeah.

- To be strong, to ask the questions, and maybe, you know, a little bit of disagreement sometimes with even your myeloma specialists about quality of life. Well, gee, you know, 40 milligrams of steroids, four days on and four days off, back then, that's what it was. That's how he prepared for transplant. And that's a pretty rough, today, you don't have, thank goodness. And that's part of Mike Katz and the IMF, getting it to a clinical trial to show steroids don't need to be that high.

- High of a dose.

- So that's a good thing.

- No, it's, you know, it's amazing the work that's been done. There was no such thing as quality of life back in 2000. And now there's clinical trials on quality of life. So it's very positive.

- Yeah, and some of the fun things, the lighter things that we did when he was preparing for stem cell transplant, and it was with Dexalone because that's all there was back then, and it was 40 milligrams, four days on, four days off. We would have ice cream parties. Anybody that's been on dex knows that, boy, you get a little bit of a sweet tooth. And so,

- And wait for ice cream to go on sale and buy like five gallons at a time, and just go down. It was, yeah, it's really bad. A lot of ice cream.

- Our freezer was stocked with ice cream.

- Yeah.

- Yeah.

- The summit of ice cream.

- That makes you hungry.

- But we did fun things, too.

- Yeah.

- Like we got tickets to a Red Sox game, we're all big fans. In the early 2000s, it was big Go, Sox, right? So in addition to going to see the game, I called the Red Sox and I said, "Hey, is there anything special you can do?" And so we had a private tour, we sat down in the dugout, and watched batting practice with the two kids. We got to go in the Green Monster, sign our name on the wall. And that was, maybe,

- That was right

- A couple of weeks

- Before my transplant, yeah.

- Before your transplant. So that gave you a,

- Oh yeah.

- You know, something to feel good about

- Positive, yeah.

- When you're having a rough day. So for anybody that's going through some challenges, think about what makes you happy and try to find time to get that in. So on those days you're having a rough day, you can just think back, "Wow, you know, that was pretty cool, we had some fun."

- Another funny time was when you shaved my head.

- Oh, okay, well, you tell the story.

- So obviously, when you have a stem cell transplant, you lose your hair. So I didn't want my children to be scared, so I decided you guys shave my head and the kids could take part in it. So they all shaved my head. They gave me a mohawk, they made it fun, they loved it.

- And then.

- We put a shamrock. We tried to do shamrock

- Tried to do shamrock in the back of my head.

- For luck in the back of his head. Didn't look like a shamrock, so.

- No, no. So we did that. And when I went and had my transplant, my hair started growing back and I thought, "Oh, my God, I shaved my head for nothing." But then it fell out.

- Yeah.

- So it was all good.

- But the kids had fun.

- Yeah, they had fun.

- And so when they came down to New York to visit him.

- To see me, they wouldn't be scared, yeah.

- It wasn't looking at you, like, "Oh, my gosh, daddy's bald.

- Yeah.

- That's one tip I would give anybody if they had younger children.

- Yeah.

- To shave your head so they don't come into the hospital setting and see you, you know, your hair gone, so.

- Whew, yeah, 25 years.

- We've had a lot of friends.

- We've had a lot of amazing friends that lifted us.

- Yeah.

- And that's why I think we do what we do. We've had so, so many friends we've learned and loved along the way.

- Yeah.

- Including Jack Aiello, most recently. And you know, that everyone hurts and everyone is really hard and hits you deep down. But I think what we've done with that and what works for us and helps us is we cherish each one of those fun times. When we're out at a program or we're out having dinner, or doing something with all of these patients that we meet. You don't think about it at the time, but later, you think, well, maybe we'll be doing something and we'll say, "Oh, my God, Jack would be laughing about this."

- Yeah, yeah.

- And it keeps them alive in your heart. It keeps their memory going. It makes us still feel connected, but it also brings the realization of we've lost too many friends.

- Yeah.

- And there's still a long way to go. You know, we have, like Michael said, an armamentarium now of therapies available. So how do we use them and when do we use them? And that's why it's so important to learn at least a little bit about maybe what your next, Jack used to call it, the lily pad.

- Mm.

- What's the next lily pad you might be jumping to? You don't need to know everything about myeloma because it could blow your mind. There's just too much to know, and that's what the myeloma experts are here for. But if you know at least what those next options may be and what the side effects are to each one, and then you have the conversations with your doctor, it helps you to feel a little bit more empowered. So that when that shoe drops,

- Yeah.

- And you feel the ton of bricks again, it may not be so bad, because you might have a plan.

- You're ready for it, yeah.

- Yeah.

- But the other thing was with the SGLS, the first one we went to, was the year after I was diagnosed. So I was 37 and we showed up, and there was what, 30 people there?

- Yeah.

- And they welcomed us with open arms. They were all in their 60s plus. And we were thinking, "Oh, my God, we're the youngest ones here." They're talking about grandchildren, we're talking about our children. But they basically welcomed us with open arms and which empowered us to go start the first support group. So, and all those people, they're, you know, cherished. We had many, many good friends in that group, yeah.

- Yeah.

- But that's the feeling we strive to recreate every year at the support group leaders summit. The feeling that we had

- Yeah.

- Of belonging, of these people understand us, they care, they understand what we're going through. And if we can do that for others at every support group leader summit, so people feel like, yeah, I found, and now we call it fammily, F-A-M-M-I-L-Y, our family. And we've heard so many people now talk about, I get it, fammily. And that's important.

- Yeah.

- It helps you to feel, like, not just at that one meeting, do you have people to talk to and relate to and network with and learn from, but you can call them up. You can continue that friendship with a Zoom call or on the phone or at another program. And it becomes like a family reunion, where you can't wait to go back to talk and to find out. So how are you doing and what's new? And how are the kids and the grandkids? And have you gone on vacation? It's about living life.

- The SGLS is like a family reunion, absolutely. You know, and the newcomers come and see that.

- Yeah.

- And it just revolves over and over. Well, I think it kind of does because it kind of defines me. It's my life. It's a passion for me to help patients. And my wife's a vice president at the International Myeloma Foundation, so we're always talking about multiple myeloma quite a bit. But I do have outlets. I have a band I've been in for 30 years. And, but it's a part of our life. I try to set aside, which I've done very well through the years, not to think about the other shoe dropping. So I just think about helping other patients, and you know, I've been so fortunate that my therapies have worked well for me. But it really is just a passion to be able to give back.

- So it is part of our life, but you really enjoy life outside of myeloma.

- Yeah, absolutely.

- You know how to have fun.

- Yeah.

- Every week, you have band practice, you go out, and you do things that are who you are. And myeloma's just a part of that now.

- Yeah, yeah.

- There's a lot of good things that the IMF has done over the years. I think that.

- When you started, there was 30 support groups.

- Yeah.

- Now there's over 150.

- Yeah.

- You have a big hand in that.

- Yeah, I guess I'll get a little emotional over that because I feel like, wow, I wasn't expecting that. But I kind of feel like they're my babies. All of these support groups that started through the years and I've seen them grow literally from kitchen tables and some of the groups that I would go and help the leaders get started. I would stay with them over, you know, stay overnight with them. The meeting would be at the kitchen table, might only be one or two people coming in.

- Yeah.

- And then the groups grow and flourish and become these amazing local resources, and places of hope and gathering. And people just keep coming back. And to think that now there's so many, we've gotten through COVID, and all of them survived through COVID, and they were virtual during COVID. And then when we came back somewhat right back to in-person. And then some are doing hybrid with a little bit of a combination of the best of both worlds. And the groups just keep growing.

- So the IMF had a large part in saving all these groups from disbanding during COVID. So if it wasn't for the IMF, a lot of these groups wouldn't have been around still.

- Yeah, we gave them free Zoom licenses and trained them on how to use the technology.

- Yeah.

- So yeah, that's a really, that's a good thing.

- Well I used to say when I was diagnosed early, we'd circle the wagons, like just our, you know, the two of us and our two kids. That's what we used to.

- What's important in life.

- When things got rough, we would say circle the wagons, 'cause we used to call ourselves Team Tuohy, you know?

- Yeah, yeah.

- But yeah.

- And you know, it's funny because even our kids talk about silver linings. When times were tough, I mean, we didn't have two pennies to rub together. And you know, the kids would understand. We don't go shopping at designer stores.

- Right.

- You know, you buy your sneakers and you buy back-to-school shopping. And, you know, I would say, "Okay." It was almost like a math lesson, "So we could go to Sears and buy two shirts," right?

- Yeah.

- But they-

- 'Cause she was a stay-at-home mom when I got diagnosed.

- Mm.

- And my company, I worked. I was an islet toolmaker, so I worked in a factory. But you know, I got three sick days a year, that was it. And then once I was out, I was screwed. I mean, the guys I worked with gave me their sick days and stuff like that. But it wasn't conducive to, like, if you worked at a salary job, you'd be out, you'd get, you know, paid. So we were in a rough spot for a while.

- But you see what's important in life.

- Yeah, absolutely.

- And I think now that the kids are grown, we've seen them, you know, we're proud of who they've become.

- Yeah.

- They care about the world.

- Oh, definitely, yeah.

- And other people. And you know, if that's a beautiful thing that evolved from myeloma.

- Yeah. Yeah, they got to see how wonderful people could be, you know?

- Yeah, kindness of others.

- Yeah, our town saved us, you know? It was crazy.

- Well, at one point in time, right after transplant, the town wanted to do something. And you know, like most people, you say, "Oh, no, we're good, we're good, we're good."

- Yeah.

- And we came home to a surprise. They had a big ZD dinner.

- Yeah.

- And he couldn't go, because his immune system was shot.

- I just got back from the transplant.

- But I went with the kids and they were little.

- They were like 600 people or something.

- No, there were 800 people there.

- 800 people there.

- They ran out, they was at the firehouse. They ran out of food, they went back to the restaurant, and got more cans of sauce and pasta, and people were out the line in the firehouse. But people, they didn't care. They said, you know, we're from a small town. They were talking with neighbors they didn't see in a while, and they were happy to just come and do some good.

- Yeah, no.

- And when the kids saw all these people coming and coming,

- Yeah.

- And because you sang in the church choir and you were a coach, and,

- Yeah.

- I was doing things in the town, it's amazing how many people you know.

- Yeah.

- And then they come to help and share and care.

- Yep.

- So we could give a lesson on silver linings.

- We'll always be grateful for that. Yeah, I mean, yeah.

- Yeah.

- I would say, remember it's a rollercoaster and keep pushing on and be positive. And because I was fortunate that I was sent to a myeloma center right off the bat. So I was very fortunate in that regard, but I was still scared, so I tried to stay as positive as I could. So I would probably tell myself that just to realize it's a rollercoaster and keep, you know, stay positive.

- Yeah, and, you know, take care of yourself, not just physically, because myeloma is a physical disease. But emotionally, spiritually.

- Yeah.

- And, you know, we talk about resilience, and you're not superman. You're not always going to be like Mr. Positive, right? So on those down days, know what those things are that make you feel good. For me, I love to go out in the garden or to spend time with you or the kids and just doing activities, and living life. Just keep living life. We have been through a rollercoaster. We like the baby rollercoaster, we don't like the big scary rollercoaster.

- We like it to be boring. Yeah.

- Yeah, be, yeah. I always said, "I never thought I would want a boring life with you, but a boring life is a good life." But one of the things when I look at you and I think of all we've been through with the kids, one thing that always made me feel good is you took your musicianship and you wrote this song, and it's called, "I'm Not Leaving."

- Mm-hmm.

- And you wrote that right before your stem cell transplant.

- Yeah, yeah.

- And some of the words were I'm not leaving, I've got too much left to live for.

- Yeah.

- Whew.

- And.

- That was for you and the kids.

- Yeah.

- I mean, it's my inspiration.

- But you sang it. You sang it to so many other people. So we did this crazy project called the Myeloma Mobile, where we went across country in a big RV, and we tried to educate local small places.

- We went to 20 cancer centers that we had events at. So it was really something.

- And you played the guitar and you sang.

- And Ally played the piano.

- And our daughter, at the time, learned and she played the piano.

- Mm-hmm.

- But that was such a source of strength. And every time I hear you sing that, it just makes me so proud of you.

- Oh, thank you. Well, I'm so proud of you. I tell you all the time how proud I am of you. When she started at the International Myeloma Foundation back, what, 20 years now.

- Mm-hmm.

- And like you said, it was 30 support groups. Now there's over 150 and has your hand marks all over it. But just how you kept me strong and how we both learned together, mechanism of action, all the different drugs. And you're my best friend, too. So that says it all. But I am incredibly proud of you.

- Oh, Team Tuohy all the way .