Anna: Hi, Maryann. I'm so excited to have you with us here today. Your experience is going to be such a valuable addition to the MedSpoke community, and I know our audience will gain so much from hearing your story. Thank you for making the time to join me. Let's start by getting to know you a little bit better. Could you tell us a bit about yourself?
Maryann: Yeah. Hi, Anna. It's nice to meet you. And, my name is Maryann, and I'm, retired, grandmother, mother, and very active with my family when I can be. Because of sickness, it's sometimes hard to be there.
Anna: Okay. Perfect. So, thank you so much for that great introduction, Maryann. I wanted to talk a little bit about the Miracles for Myeloma 5k run/walk. Can you share a bit about the event and what it means to you personally, as well as to the myeloma community?
Maryann: Oh, sure. The walk is something I'm looking forward to doing for the first time in person, as I've done it virtually before. And it's exciting to be around all of the other patients and caregivers who have multiple myeloma to walk with them and get to know them and share my story. Getting involved this year because I'm going to attend the seminar that's on Friday and Saturday also. So it made perfect sense to actually participate in the walk, not just virtually, but to actually be there and walk with everyone.
Anna: That's great. And what would you say to someone considering participating or donating who may not know much about myeloma?
Maryann: Well, I encourage all of my family and friends to donate by telling them that my disease is a chronic disease. So I kind of compare it to, like, diabetes, where it will never at this point, there's no cure, so it will never go away, but it can be controlled. So, with the research that the IMF is helping with, that is my goal to further, research and to support other patients who need financial help that the IMF can give.
Anna: Absolutely. Could you please walk us through your experience with multiple myeloma?
Maryann: Sure. Well, I was diagnosed with smoldering myeloma in 2019. Actually, by accident, I had had a pulmonary effusion, which led the doctor to do, the blood he didn't like the blood results, so he did some additional testing and found out that I had the smoldering multiple myeloma. Then, in 2021, because I had to get blood test every three to six months, it was an active case of myeloma. And I did a first round of treatment, which was, Velcade, Revlimid, and dexamethasone. And then I did have the stem cell transplant in August of 2021, which kept me in what they classified as a remission. I never went to zero, but it was very low at 0.1 or 0.2. And it kept me there for about eighteen months, where then I had to go back in active treatment again, about last summer, at some point last summer, which I now am on a dosage of Darzalex, Faspro, and dexamethasone.
Anna: Okay. And what would you say are some of the biggest challenges people with myeloma face that you wish more people understood?
Maryann: Oh, well, that it's a tiring disease. I'm chronically fatigued. Even though I'm in, right now, I'm sort of in remission, where they classify it because my numbers are low. Some doctors call it remission. Other doctors say, well, you're never in remission. But I would say my biggest thing is the fatigue and people not understanding why you're just not your old bubbly active self, because it just tires you out so much.
Anna: For sure.
Maryann: That's my biggest hurdle.
Anna: Yeah. Yeah. Thank you for sharing that. And turning our attention back to the upcoming Miracles for Myeloma 5k in Philadelphia, what's the highlight you're most anticipating, or what are you most looking forward to?
Maryann: For the walk, just meeting the people, being there with other myeloma patients, who understand what you're going through, who understand that your back hurts for just doing a little bit of gardening or, who just want to be around people who are like me, you know, who have the same condition.
Anna: Absolutely. And, yeah, touching on that, you know, being around people who understand, how important is community and events like this for people living with myeloma as well as their families?
Maryann: Oh, it's very important. I think it's important, especially for my husband, who's my caregiver, because he can then also network with people who are taking care of spouses and loved ones. So I, again, would say just meeting the people, the caregivers and the patients, and networking with each other, sharing what works for you, what works for me. You know? That's my biggest takeaway.
Anna: For sure. And when you think about the progress being made for myeloma research and different treatments, what gives you the most hope when you think about the future, the future of myeloma?
Maryann: Oh, that every month, I'm reading about different trials that are working to help control this disease. And, eventually, one of these trials is going to be a cure. So that's my biggest hope.
Anna: Yeah. Absolutely. And if you could say just one thing to anyone involved in this event, whether they're running, walking, donating, cheering, you know, supporting from afar, what would it be?
Maryann: Oh, just one thing. That's a tough question.
Anna: It can be a few things if you want.
Maryann: Yeah. Well, I would say, be your best advocate.
Anna: Oh, yeah. That's true.
Maryann: You know how you feel. You know something's wrong, and seek answers because whether you're a myeloma patient or supporting someone with myeloma, you could have other things, you know, going on. So just to be your best advocate and find the answers you're looking for.
Anna: For sure. And I'm sure that will deeply resonate with anyone listening to this interview. Alright. So I'd like to wrap up with something, hopefully, a bit more lighthearted, which is, do you have any prerace traditions or personal rituals before a big day like Saturday?
Maryann: I say a prayer.
Anna: I love that.
Maryann: I've been walking. I'm a regular walker, and I've not had to give that up through this treatment. So, I would just say that I say a prayer that the weather's lovely and that I can finish.
Anna: That's great. Alright. And is there anything else we didn't cover today that you would like to share, or did we pretty much sum everything up?
Maryann: I think I think it was very nicely done. Thank you.
Anna: That's great. Well, thank you so much for sharing your story with us today, Mary Anne.
Maryann: Okay.
Anna: Yeah. We really appreciate your time, and thank you again for being here.
Maryann: Okay. Thank you. Have a good day.
Anna: You too.
