This "A Day in the Life" podcast provides messages of hope and resilience to those in the myeloma community and beyond. In this episode, we talk to Baltimore-area businesswoman Bonnie Downing. Bonnie shares how she originally faced a nine-month prognosis when she was diagnosed with multiple myeloma, and how she continues to thrive 20 years after that diagnosis. 

Transcript:

Host:  You're listening to A Day in the Life Podcast, brought to you by the International Myeloma Foundation. We hope this podcast will provide messages of hope and resilience to those in the myeloma community and beyond. Today, we're talking to Baltimore area businesswoman, Bonnie Downing who was diagnosed with multiple myeloma in 2001 just one day after the Christmas holiday. To begin, Bonnie, having been diagnosed about 20 years ago now, if you can recall for us, how did you react to the diagnosis at that time back in 2001? 

Bonnie Downing: Well, it was strange, that's the best word I can use to describe it. I had been feeling sick, I had been tired a lot. I had a really fast-paced job, I was traveling all the time. It didn't dawn on me that something was really wrong because I was tired. I just thought I was tired because I had my …. job, traveling back and forth from Baltimore to LA and back. Just really constantly working late at night. Just a really busy time.

My back started to hurt. Again, you're thinking you're not sleeping well, you're not taking care of yourself. On top of everything, I was going through a divorce so I didn't think that there was something terribly wrong with my health, but I did go to my primary care physician because I started the lose weight, which was odd. I told him, "I'm losing weight, I think maybe something's going on." He referred me to an oncologist who diagnosed me with multiple myeloma, a disease that I had never heard of, didn't know what it was, didn't know what it meant, all of that. 

Host: At the time, as you mentioned, you were going through a lot of different changes in your life, how did the myeloma diagnosis affect your personal relationships and your career development? 

Bonnie: Well, my personal relationships, it's funny when things happen to you, your crew comes together to take care of you. When I was first diagnosed, because I hadn't heard of multiple myeloma, didn't know what it was, my friend, Tony Harris, who was a news anchor for the Fox station here in Baltimore, he went online. He went online and he found all this information about multiple myeloma, but the thing that threw us the most was, you get the illness and the average life expectancy at that time was three to five years. Also that it was more common among people late in their 70s. I was nowhere near that.

We were a little confused about how I got it, but my crew really came together. My family came together to help me. My brother was taking me to and from doctor’s appointments. My brother and my oldest niece were actually in the room when we were referred to Dr. Badros from the University of Maryland Medical Center, he had mentioned good myeloma versus bad myeloma. I remember saying to him with, "Bad myeloma, isn't that an oxymoron?" He said, "Yes, it is. If you have that myeloma, the prognosis isn't good. I said, "What's the prognosis?" He said with bad myeloma, the prognosis could mean six to nine months.

I thought, "Wow, this is January, I'm not going to make it to my birthday in September." Again, a lot of confusion, a lot of not knowing what it was, and just having my family and friends come together to make sure that I was getting the best care and trying to find out what this illness was going to do to me.

Host: Wow. From a nine-month prognosis to 20 years of survival. What treatment regimens have you undergone during this time that you can recall that you'd like to share with us?

Bonnie: Sure. Well, that weekend, again, I was diagnosed the day after Christmas and I saw Dr. Badros, I was referred to him. I saw him maybe two days later and he admitted me right away. That's how sick I was. [He saw me, he met me, …all my blood, my labs, and admitted me that weekend. During that weekend I got a little chemo. I got some blood transfusions and rounds of steroids. When I left the hospital on New Year's Eve, I thought, "Okay, I feel so much better. I have energy. This is great." Little did I know that was only the beginning of what was to come. I thought maybe, "Okay, well, that's all I have to do."

It really was a lot more than that. I did a round of high-dose chemo followed by a stem cell transplant in April 2002I was an inpatient at University of Maryland Medical Center for five weeks. Even prior to that, I didn't have a stem cell donor, a family member that could step up and give me their stem cells so I was my own builder.

There was a series of times when I had to go to the hospital and be hooked up to a machine that would allow them to harvest my own stem cells from my body. They harvested them and froze them, treated them and infused them back into my body. That was my stem cell transplant. What that did was-- so followed with the high dose chemo and the stem cell transplant, that made me as sick as one person could be. I had no white blood count. I had no-- my red blood count-- All my numbers were really low. I couldn't really do anything for myself. That's why I stayed in the hospital for so long.

There were also rounds of meds that I had to take to get ready for that particular stem cell transplant. I don't remember all the names, but it was a lot of, again, just getting my body ready for what was to come. 

Host: Today, are you on any maintenance therapy?

Bonnie: I am right now. I am on a couple of drugs, one of them being Cymbalta. Cymbalta is better known as a drug that folks will take that battle depression. My best friend found that it helped with neuropathy. Neuropathy is the condition that's caused by medications and you get numbness in your fingers and toes. When I was on the Cymbalta, it helps with that. I no longer have the numbness in my fingers, but I do still have some in my toes, particularly at night.

I go to bed early, so it doesn't bother me too much. It was really severe for a while, which is why he put me on the Cymbalta. Other than that, I'm taking potassium, which is something normal in your body, but mine is typically low. I'm not taking any cancer drugs right now.

Host: You're in a remission then?

Bonnie: Yes, I am in complete remission now. After my stem cell transplant, I went into near-complete remission. The stem cell transplant did not get me to complete remission. What my doctor did was, he put me on a medication. It was dexamethasone and thalidomide. Dexamethasone is a very strong steroid. Thalidomide and the combination is part of a clinical trial, or it was in 2002 and that’s when I went into complete remission.

I've been there, I have not had a relapse at all in my treatment in condition. I've been in near-complete remission for a couple of years. Then, 2005 to now, 2021 I've been in complete remission.

Host: That's fantastic. Just to shift gears a little bit, you've been very involved with this organization, how did you come in contact with the International Myeloma Foundation?

Bonnie: Through my specialist, the gentleman that I met just before New Year's Eve in 2001, Dr. Badros. I listen to everything he tells me to do, whatever he tells me to do, I do, except for my love of Popeye's, he hates that I go to Popeye's, but I love Popeye's. If I could just get rid of that habit, I'll be okay. I followed all of his directions, all of his instructions. He's been very active with my medical care. He's got a lot of patients at the University of Maryland. We've known each other for 20 years now. 
I've gotten to the point where now I can just text him or send him an email and he'll get right back to me. We've developed a wonderful patient-doctor or doctor-rpatient relationship. I just listen to what he tells me and I do it. He was the reason I got involved with IMF. He had reached out to me to ask me if I would talk to the organization about what happened with me, and my journey with cancer and multiple myeloma. I said, yes, and here I am today,

Host: Fantastic. I know you have a positive force for others in the myeloma community, and you have what you call three messages for those who are living with myeloma, can you share those with us and a little bit about what each of those messages mean? 

Bonnie: Sure. The main one I want to share is the message of hope. When I was diagnosed, Dr. Badros didn’t diagnose me, it was another oncologist here in Carroll County who-- now that my primary care physician sent me to, he was the one that did the very first bone marrow biopsy. He was supposed to call me on Christmas Eve or his office was to tell me the results. I didn't get a call on Christmas Eve and I thought, "Okay, well everything must be fine. They didn't call me" and then the day after Christmas, I was at work and I got a call from the office that I needed to come to his office right away.

I drove from downtown Baltimore to Carrol County, Maryland. He came in the room and he said, "I'm sorry to have to have to tell you this, but you have multiple myeloma and I'm going to leave you to digest that information," and he walked out. Keep in mind, I was by myself because I was at work that day. I just thought it was going to be some sort of normal doctor's appointment. He left me there and I said, "What did he just say?" Because he also used the word malignant and I've lost both of my parents to cancer.

I knew what malignant meant but I didn't get upset or anything. I just didn't understand what he told me because I'd never heard of multiple myeloma before. When he came back in the room, I started asking him questions. I'll never forget it, he put his hand on my shoulder and he said, "Those who have hope do the best." I said, "Okay." He was the one who referred me to Dr. Badros at University of Maryland, said we were really lucky, "We have a specialist here in Baltimore at University of Maryland. I'm going to get you an appointment right away to go and see him."

It was … that message of hope and it became my mantra. I have, just the word hope in various places around my home, I have hope … on one my bookshelves and in my office, I have the words, the letters spelled out on my bookcase downstairs in my family room. Dr. Badros had asked me to come and speak to some of the docs and nurses being a patient that was doing so well.

What I did was I got a friend of mine that owns a screen-printing service here in Baltimore. He made some t-shirts for me. I found a black shirt with white lettering with the word hope across it. He made those for me and I gave them to all the docs, nurses, pecs, all the folks that worked down at University of Maryland or on the cancer unit because I wanted to share my hope with them so that they can in turn share with some of the other patients that they saw on a daily basis.

Another one of my messages was just you find the joy in your life. Yes, we have this illness and it sucks and you have to take medication and we have to get … and have chemo and it's not fun. It really isn't. There's nothing fun out about this illness. I can't imagine there's anything fun about any type of cancer, but the way-- you have a choice, you can get busy living or you can get busy dying. I tried to get busy living and find the joy in things.

I'm a huge, huge sports fan, I started going to more football games and Ravens games and when they played away, I would go on trips. My Orioles, when they played away, my best friend lived in Detroit at the time, we'd go to Comerica Park. I've traveled to London, a friend of mine was the head coach of the Cincinnati Bengals so I went to London to see his team play the Washington-- well they're now The Washington Football Team, because of their name but I just decided to travel and do things that made me happy.

One of the things I did during that time was, I always wanted a luxury car so I went out and I bought the big Mercedes SUV and this was a beautiful car. I [00:14:10] loved it and I drove it around. This was when I was in near-complete remission and while … remission, I said … My friend Amanda tells the story much better than I do. She says that, "Bonnie found out she was going to have to continue to pay for that car. She thought she was going to leave … and leave somebody with that car note. 
So now she has to continue to pay that car note on that expensive car." Well, needless to say, I did get rid of the Mercedes and just …  if you're having that car, it's just so much better. I'll just say, you don't have to go and buy an expensive car or travel, just find the joy-- things that make you happy, whether it's your friends, your family, things you like to do, pick up a hobby that you always wanted to do, or get involved with-- or go-kart racing. Whatever it is. If it makes you happy, do that because no one knows when they're going to leave this earth.

Worse to have a … diagnosis and sometimes, people don't get through it. I've lost people that I've gotten to know at University of Maryland. They lost their fights with multiple myeloma and it knocks you down. Try to find the things that make you happy and do them.

Host: Hope, find the joy, and was there another message that you wanted to share, or are you going to hold onto that one for--

Bonnie: I will hold on to that one.

[laughter]

Host: I'm sure the other two will be very inspiring to the listeners who are listening to this podcast. As you're maybe familiar in Baltimore and in a lot of the Southeastern states, the IMF has recently started the M-Power initiative, which is an initiative to remove barriers and care for the African-American community and outcomes in the disease. In your experience, what would you say are some of the barriers to healthcare access for African-American myeloma patients?

Bonnie: With just getting counseling from the messaging. Like I said, before I was diagnosed, we tend to push things aside when it comes to our health and Oh my God, we've got kids to take care of, we've got this job to take care of, we've got this home to take care of, we're taking care of everything and everybody around us except ourselves. For the older African-American access to healthcare is just so important. I think what the IMF is doing and getting the word out about a blood cancer that primarily strikes older African-Americans, I think that it's a wonderful, wonderful thing to see what the organization is doing.

Just educating people on what to look for and how to understand the diagnosis once you get it and where to go for help more importantly. I've talked to a number of patients-- I don't want to say my path has been easy because it hasn't, but I've talked to a number of patients who didn't have quite the support that I had, they had stumbled along the way, they've had maybe two, three, four doctors. That hasn't been good. I think that education and knowing what to look for and knowing to listen to your body.

I think I am after getting all those messages out there, which I think is wonderful for everyone, not just African-American patients but everyone, but they're also doing something, they're going into neighborhoods that are primarily African-American. I know some of … just promoting the education of this illness. I apologize, my … dog.

Host: Oh, no worries. I can't hear your dog, but it's nice to know that you have a-- what's your dog's name?

Bonnie: Her name is Carson. I actually named her after the quarterback of the Cincinnati Bengals at that time. She's an old woman now, but her name's Carson and she's crazy because she's a lot of fun.

Host: [laughs] It's good to have a companion especially right now, being in the pandemic, how has that been for you coping with just the isolation and living in this time?

Bonnie: I can't lie, it was difficult. Of course, now, getting out more and seeing people more-- I'm fully vaxxed and I would encourage anyone listening to this to please get fully vaccinated so we can get back to life. Especially if you have an illness like multiple myeloma, you certainly don't want to get COVID and have that be the source of another … I'm sorry, in 2020 we all got six … from work on March 13th and I … for 30 days.

So we did. I grabbed a bunch of stuff, files, and all that. 30 days turned into now. We're not going back to the office. The majority, I would say 90% of the staff, they're still and will continue to work remotely. Those first couple of months, the first three months were not good for me. I felt like, social person, I like getting out and seeing friends and seeing family and being around people and those are the things that you couldn't do. There was that sense of isolation and it was very difficult.

I felt the walls closing in on me. I have not been to University of Maryland Hospital. I didn't go at all last year and I haven't been this year, just because I'm doing well, they don't want me in the hospital. They're taking care of really sick patients in the hospital and I'm not in that group right now. I've been doing telemedicine appointments with Dr. Badros, which has worked out fine. I go out and I do my bloodwork at Labcorp and then he gives me my results. It was difficult to deal with that isolation so I tried to talk to as many people and I was working a lot during the isolation.

It was tough because you're at home alone. My field was community affairs so I was being around a lot of people. It was difficult. I didn't really worry too much about my physical health at that time. I'm more worried about my mental health. I started doing some yoga as much as I can. I'm not very flexible. I started doing a little yoga just to keep my mental acuity sharp.

Host: Just to let you know, the IMF is actually starting a mind and body page on our website and we're going to be providing some breath work and yoga exercises that are catered toward myeloma patients. Keep your eye out for that.

Bonnie: I think that's wonderful. I think that's wonderful, I hope that I'll take advantage of it because it can only help. People that are going through and worried about multiple myeloma, worried about getting in to see their doctor, worried about going through their labs done, worried about test results, that could be really hard on your mental health as well. I've always thought one day they're going to come back and say, "Oh, it's back." Every time I get a back pain or something like that, and I get my labs done, you're always worried.

You try to think positive, but there's still that little gremlin inside of you that wants to play with you. The fact that you can do things for your mental health and the fact that the IMF is offering things for your mental health, how to breathe, how to relax, how to not always think the worst is coming, I think that's fantastic.

Host: Finally, I'm just going to wrap up, is there anything else you'd like to share with listeners that we did not talk about today?

Bonnie: I would just tell listeners to be vigilant. I tell my friends this all the time, you know your body, your doctor can see you and you can get labs, but if your back is hurting or you feel tired, tell your doctor what's going on with yourself. Be vigilant. Call your doctor, call your doctor's office, make an appointment. Have them see you as quickly as possible. Stay on them, they're not necessarily going to come to you, you have to go to them. You have to make sure, if you can't remember things, write them down and take that note or take that paper to your doctor when you see him or her.

Say, "Listen, I have A, B, C and D, what's wrong with me?" Just stay on top of your health care because again, doctors are human as well. They may say, "Oh, your back hurts, you're probably doing too much lifting." In reality, you got this illness that starts in your bone marrow and you may not even know it unless you've been vigilant about your health. I say to people and I say to your listeners, please stay on top of yourself. You have to take the lead. Your doctor is going to be there for you, hopefully, but you have to take the lead in your own health care.

Host: Thank you so much, Bonnie.

Bonnie: That would be my stern talk.

Host: It's a great talk and everything from hope, find the joy and advocate for your health. All of those messages are going to resonate with people very much. Thank you so much for your time today.

You've been listening to A Day in the Life podcast brought to you by the International Myeloma Foundation. To learn more about the IMF and myeloma, visit us at myeloma.org

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