Pod4Cure #4: Healing with Words

In this episode of Pod4Cure, meet Ramae, a member of the All4Cure community. After her diagnosis four years ago, she began sharing her experience with myeloma through writing. Through her blog, Incurable Blessings, Ramae shares poignant perspectives on life as a myeloma patient and reveals the hidden blessings she finds every day. Hear her describe her myeloma journey, the path that led her to write, and how she continues to share messages of inspiration and hope.

Click here to read Ramae’s blog, Incurable Blessings.

Sara Lippert (Left) & Ramae (Right)

Transcript:

Sara: Hello, and welcome to Pod4Cure, the podcast brought to you by All4Cure discussing health care for patients with myeloma, their caregivers, and everyone in between. My name is Sara, and today I am joined by Ramae, an All4Cure patient and blogger. Ramae, how are you doing today?

Ramae: I'm doing great. Thank you.

Sara: Thanks so much for being with me today and talking a little bit more about your experience as a myeloma patient and how your wonderful blog Incurable Blessings came to be. But before we get into that, could you tell me a little bit about yourself?

Ramae: Sure! I'm 51. I was diagnosed with multiple myeloma when I was 47, so I'm relatively new to the game. Before that, I have three kids. They are 16, 21, and 23. Before my diagnosis, or up until I was a high school math teacher. My specialties were calculus and geometry. And before I was a math teacher, I homeschooled my children for many, many years. I have been a long-distance runner for many years, high school, college, and beyond. That's one of my absolute favorite things to do.

Sara: You mentioned that you were fairly recently diagnosed only within the last few years with multiple myeloma. I was wondering if you wouldn't mind sharing, what has your journey with myeloma been like up to this point?

Ramae: Interesting is probably the word. You know, when I was diagnosed, or before I was diagnosed, I was a long-distance runner competing in 5Ks and 10Ks. And I had had a pain in my hip, my left hip, for years, and I just attributed it to, "Well, I started on hurdles when I was in seventh grade, and I've been running my whole life." I just thought it was, you know, wear and tear with age. I had gone to medical doctors who did blood labs and said, "You know, it's fine." I was also tired. I had gone to just a variety of medical doctors, alternative doctors, chiropractors, naturopaths - you name it. The only reason was that I wanted to keep running. So I just thought, "Well, if I can get this pain in my hip down, I can keep running."

Ramae: And ironically, one day, I fell and broke that sore hip. That's when I found out that it wasn't just wear and tear. It was actually a plasmacytoma that was nine centimeters throughout my femur. Very shortly after that, I was diagnosed with multiple myeloma. It was a very shocking introduction to the world of cancer. I never thought that that's what the hip pain was from. I ate well; I ate organic foods. I was the most nutritious eater at my school that I taught at. So it was just very interesting. The whole journey has been interesting. I had to move away from home for a couple months right after my diagnosis. I stayed at the Hope Lodge in Minneapolis for several months. People don't believe me when I tell them this, but those were some of the two of the best months of my life, despite being diagnosed with an incurable disease.

Ramae: I had to leave my kids and all that, but I've never felt such community. I met two ladies with multiple myeloma at the Hope Lodge that kind of helped navigate me through it. They're like, "No, don't worry about these drugs. They're going to give you; they're okay. They're tolerable." And both of the two ladies that had MM were there for their transplants, so I got to see them go through it. You know, I've had such different perspectives, from the good, the bad, the ugly, the scary, the comforting. After that, I had a surgery to replace my femur, and they put an intramedullary rod down there, which was great because then I could walk again. I went from being this natural person, eating organic foods, taking homeopathic remedies to radiation and chemotherapy and steroids and surgeries and rods. It's just been nothing but interesting. It just runs the gamut of emotions - hopefulness, desperation, you name it! It's been a little bit of everything.

Sara: No kidding! That's a really intense story. I'm really interested to hear about the place that you stayed in during your treatment. It sounds like you were in the ultimate support group there for a little bit. You said it was helpful to see people go through what you would be going through?

Ramae: It was amazing, to be honest; it felt like a college dorm where everybody there had cancer or was a caregiver of someone that had cancer. The mood was so positive. People were so hopeful. The sense of community was just nothing I've ever felt before. It was the absolute ultimate support group. I've written several articles about the Hope Lodge, just because it was exactly what I needed at the time. It was exactly what I needed. I can't imagine how I would have fared. What really mattered was the interpersonal connections that we had.

Sara: That's really amazing. But your note on connection, it brings me back to the work that you've done just in the myeloma community and the cancer community at large, especially with your blog Incurable Blessings. You mentioned that you've written about the Hope Lodge in those as well. What inspired you to begin writing about your experience as a patient?

Ramae: Well, I remember following a little girl on CaringBridge, a friend's daughter that ended up passing away from AML, believe it was. She was young and had leukemia, and I was reading her CaringBridge story. I understood the value of CaringBridge because it keeps people informed without them having to ask, "How's it going? How's she doing?" So I thought right away, I knew that I didn't want to field a bunch of texts and phone calls. So I signed up for CaringBridge, and I started writing about what this experience was like. And, you know, I found that I had through that more support than I thought I did. People were reading it, they were responding, they were sending cards and notes of encouragement. So there was that aspect of it. Also, it helped me process what was going on. I had told people before, "If I ever get cancer, I'm going the natural route.

Ramae: I'd go down to Mexico and find something to save me." So I think people were really interested. You know, I was the last person they thought would get cancer. And then, "How is she dealing with all this?" And then, for me, how am I dealing with all of it? I became part of a completely different world, and writing about it on Caring Bridge helped me both, you know, make connections with people that were supporting me and also process through what I was going through. And so, when I left the Hope Lodge, and after my stem cell transplant, I decided it'd be easier with a blog. It's just a spot on the internet. No one has to sign into anything. So I switched it over. I was really sick. I had a stem cell transplant, and I couldn't do much. I was on the couch a lot, and I needed something to keep my mind active and to keep my spirits up.

Ramae: It was something to focus on besides how sick I felt. And so why not, you know, why not learn to design a website? I took a class online and thought, "Well, it'll give me something to do something, to focus on, to take my mind off of the feelings of, of illness." There was also the thought in my mind that at some point, you know, I'm going to have to go back to work. And they'd already told me that teaching is probably not the greatest place to be, especially with a compromised immune system of a myeloma patient. And I thought, "Well, maybe I could be a blogger." It was kind of a whole thing of connecting with other myeloma patients. There was the, "Maybe I'd have to make a living." There was processing what had happened. I was never trained as a writer. I was a math teacher, and I had a master's degree in math. I think the last thing I had written was a Christmas letter, and before that, maybe my master's thesis. But people were giving me positive feedback saying, "Hey, you should write." It was kind of a multifaceted thing.

Sara: That's amazing. Did you feel like your writing changed when you went from a more informative kind of CaringBridge area to a more personal and, I guess, almost artistic vein?

Ramae: Definitely, it was easier to write on CaringBridge. I'd tell you that it was just what happened today, who I met, you know, it was just very informative, I kind of didn't have to be very creative. With the blog, it had to be a little different. When I started it, I was in remission. It just wasn't the same kind of thing, and so I had to get more creative. It was a struggle. It still can be. I'm still trying to figure out, you know, my purpose. I definitely want to get more creative with it. I'm still trying to find my writing voice. Also, I don't know how much I want to focus solely on myeloma. Like, with CaringBridge, that was all there was. It was every day. It was right in my face. I was staying at either Hope Lodge or Gift of Life Transplant House or getting some active treatment.

Ramae: And then, remission is a whole different ball game. And the question becomes, "How much do you want to focus on myeloma? How much is it really in your life, and what do you want, or what do I want to write about what I want to feel? What do I want to focus on?" And so I've been dabbling with different types of writing, more creative, more spontaneous. I write about my dog. And so, any myeloma patient knows you can't get away from myeloma. It's always there to some capacity, especially when planning for the future. When looking back, when thinking about me, I'm not running anymore. I'm not teaching, my life has changed so much, but I still want my writing to be uplifting. I don't want it to be so focused on the past or the things I can't do. I don't want to put something out there unless it's going to be uplifting to me and uplifting to others.

Sara: That makes a lot of sense. And in thinking about that as well, when you're saying, focusing on things like hope and looking towards the future and not necessarily resonating on the past, it really brings me back to the title of your blog, Incurable Blessings. It's a little bit... it feels almost like an oxymoron. What is, for you, an example of an incurable blessing?

Ramae: Well, I don't think if I hadn't been diagnosed with an incurable disease that I would have had the motivation, the inspiration, to do something different with my life. I'm happier now. I mean, I have my days, that's for sure, but overall I'm much happier now. I'm more at peace now. I have more clarity than I did before. I live for myself more than I did before. There was this kind of push don't be selfish. You know, I was a teacher, and I felt so much duty and kind of almost a compulsion to help others that I was neglecting my own self-care. And I don't think I would have known or understood half the things that I do now without the diagnosis. I've also met just the most wonderful people. You know, incurable is a terrible word. Some people really don't like it.

Ramae: One time on my blog, I had someone write to me and say, "Will you stop using the word incurable?" And I heard her, I understood, you know, but I said, "You know, right now it is classified as an incurable disease. That doesn't mean that I think it's incurable." Another reader said, "You know, I love the title because it's not just the diagnosis. That's incurable; it's the blessings. If you can think of yourself as incurably blessed." That's where it hit me. That's exactly right. Every day, there's something good that happens because I'm living with myeloma. You know, I have this. It helps me focus on what I do have and what is good, and what I can do instead of what I can't.

Sara: I think that's beautiful. And I can see how your little corner of the internet in your blog and even just yourself. I am really grateful for what you do. And I'm sure countless patients feel the same way. On the note of others, are there any pieces of advice that you would share with myeloma patients, maybe if they are interested in finding ways to make those connections?

Ramae: Through my blog, I've had some people write to me and reach out and ask for advice with certain things, with treatments. I love that part of the connective piece. As far as connections, definitely find support, accept help. You know, I was so independent before all this happened, but there's so much good that comes from allowing others to help us. I need help with a lot of things now that I didn't need help with before. And it was a hard time to do that, but find those people that allow you to be you, that allow you to feel all the range of emotions. Like, yes, I have this blog. It's called Incurable Blessings. Obviously, I feel blessed. I focus on the blessings. That doesn't mean that I don't have days where I'm completely depressed and just done. Like I'm frustrated, and I'm feeling kind of hopeless or scared of something. But that's the kind of support we all need. As those people say, "It's okay, it's okay to feel that it's this way, keep looking forward, you know, focusing on the hope and the good and, and the joy that you can." But at the same time, you gotta find those people that are going to allow you to cry, allow you to be angry, allow you to be frustrated, allow you to get those emotions out and just still feel loved and supported.

Sara: Certainly, I think that's the best advice that you could give, and I hope it reaches the people that need to hear it. Thank you so much for sitting in and talking with me today, Ramae, you are an endless inspiration to me, and I'm really glad that we got to chat.

Ramae: Thank you. That actually means so much. Every time I hear somebody say that I still get surprised. When people say, "Hey, I, you know, you're inspiring." I feel uncomfortable with it because it's just me, I guess. I'm just doing what I need to do to make sense of all this and to make meaning out of life and make it the best that it can be for as long as I have it.

Sara: Thank you so much for listening to this episode of Pod4Cure. If you or someone you know has multiple myeloma and would like to register with All4Cure for free, you can visit All4Cure.com.