How One Woman Climbed from Patient to Advocate

Allison Freedman was an avid hiker, mother of young twins, and had just completed an MBA when she began suffering from severe back and rib pain and overwhelming fatigue. Repeated visits to the doctor and medical testing left her without a diagnosis. As her pain worsened, imaging revealed she had multiple broken ribs and vertebrae. At 42, a bone marrow biopsy confirmed that she had the blood cancer multiple myeloma. Freedman underwent intensive treatment including chemotherapy and a stem cell transplant. At one point she became bedridden. Though she went into remission, she had been unable to live the active lifestyle she previously enjoyed and took to physical therapy to build back her strength and regain her abilities. At 51, she managed to climb Mount Kilimanjaro in Tanzania and now mentors others with multiple myeloma. We spoke to Freedman about her journey through diagnosis and treatment, her recovery, and why she went from not wanting to talk about her condition to being a patient advocate.

Daniel Levine: Allison, thanks for joining us.

Allison Freedman: Thanks so much for having me here.

Daniel Levine: We’re going to talk about multiple myeloma, your experience with the disease, and your work now as a patient advocate. You were 42 years old and had just completed an MBA program and started a new job. When you went to see a doctor, what caused you to see a doctor?

Allison Freedman: I had been really active. I live in Boulder, Colorado. I was always getting out. I had young kids, they were eight at the time, my twins, and I’d started a new job, but I had this excruciating back pain and I was exhausted so I could chalk it all up to different things. But the back pain was the part that I thought, I think we can fix this a little bit. Maybe I could get a standing desk or something like that and make it a little bit better. And so, I just went to this brand new doctor and said, hey, I’ve got some back pain. And he did the appropriate things by checking everything and that’s how it started. I also had these back-to-back upper respiratory infections, which again, new job, I had young kids, didn’t really think much of it, even if it took a really long time to resolve. And I kept having them one after another.

Daniel Levine: Back pain, respiratory infections, they don’t sound like cancer necessarily. How difficult was it to get a diagnosis?

Allison Freedman: Oh gosh, it was so hard. I’m not the right demographic, so no one asked this question. We just treated the symptoms. You have respiratory infection, you need antibiotics, great. You have back pain, here’s some pain medicine. You’re tired, maybe you should sleep more—really just looking at what was going on. It took, I don’t know when everything really started, but by the time things progressed in the last I would say three months, it went really fast. I just got sicker and sicker over those three months until I really knew something wasn’t right.

Daniel Levine: And how were you ultimately diagnosed? Was it a blood test, something else?

Allison Freedman: Yeah, great question. That same doctor had been following me and listening to me complain more and more frequently. He got a call from me right after I had gone on a work trip thinking, oh, this’ll be great. I’ll get some rest. I’ll have nice food, get a little bit away, come back and feel better. But I actually realized something was really, really wrong while I was away. It became obvious to me and so I came back and instead called that doctor and said, I know we don’t know what’s going on, but I think I’ll just check into the ER and they’ll go through the appropriate testing and they’ll just somehow figure out what’s going on. And I think something in my voice at that moment made him realize that we needed to really push for a diagnosis to figure out what was going on at the root.

Daniel Levine: You were ultimately diagnosed with multiple myeloma. Is this something you had heard of previously? What was your response to being told you had multiple myeloma?

Allison Freedman: Yeah, so the thing that my doctor really was trying to get for me was just imaging of my back, a CT scan. But because I had had no injury, but I had this pain but I had no injury, so it was really hard to convince insurance companies that it made sense to get this imaging done. But as soon as we did the imaging, they basically concluded it was obvious that either this was a kind of cancer that had progressed into my bones or it was multiple myeloma, which is cancer in your bones. And this is a very obvious, very typical presentation of it. I had never heard of it. And so within 24 hours of having that imaging done, after he pushed through the order for it with the insurance, he said, I’m so sorry. I think this is multiple myeloma now. There’s some steps you have to go through to rule out other cancers because you can’t get a diagnosis until it’s confirmed. And so I did have to go and get a very typical PET scan, which is part of, I believe, a lot of different cancer diagnoses protocols. But then ultimately I did need a bunch of blood work and a bone marrow biopsy to confirm that there was cancer in my bone marrow.

Daniel Levine: For listeners not familiar with multiple myeloma, what is it? How does it manifest itself and progress?

Allison Freedman: Yeah, it’s a blood cancer and it forms in your plasma cells, and this is part of your immune system. It’s the white blood cells that produce antibodies, and so those abnormal plasma cells just start building up in your bone marrow and then they form tumors in the bones. And so that’s sort of what had been happening in the background of all this pain and these sort of changes that were going on. So it impacted my immune system, it impacted my bones, but by the time it was caught, I had multiple compression fractures in my back and breaks throughout my ribs.

Daniel Levine: And what were you told about the condition when you were first diagnosed?

Allison Freedman: I was told that they had good news and bad news that I did have cancer. Probably the thing that most people fear the most is you have cancer. So I got that diagnosis, but it’s incurable and yet treatable, and I didn’t really know the significance of those things that he said on that day. I do know now what it means a lot more, but at the time it was cancer is pretty overwhelming, and then incurable, oh gosh, and then treatable. I wonder what that means or so. It took some time to sit with all of that.

Daniel Levine: You have this new job. You have twins who I believe were eight years old at the time. How did you balance managing your disease and managing your life?

Allison Freedman: I think that over time, I can’t say it all happened in one moment or one day. It became a moment by moment, step by step opportunity to see things differently. I started to see the value of things that I had been rushing through—the moments with my kids. Oh gosh, it’s so annoying. It’s so hard. It’s parenting. Parenting is such a gift anyways, but it can be really grueling and suddenly I just wanted every moment with my kids. And then the opportunity to work, the opportunity to work was so important to me and I kept working through it. And I did that because I had an incredibly gracious boss who allowed me the flexibility to work around my appointments and my exhaustion. As I was going through my initial treatment, I had colleagues who would step in if I needed something. These people were showing me about how important it is to look around and ask for help, to seek help when you need help, and then to show up for other people when they need help. And those are some of these amazing and quite beautiful lessons that I learned through all of this. And I’m lucky, I mean, I was able to basically work through the cancer. I did have to take some time off when I had a bone marrow transplant that’s in-patient, and so I took some time off, just a few weeks for that.

Daniel Levine: It’s interesting to hear you talk about asking for help because my sense is that you didn’t let a lot of people know about your diagnosis, and I’m wondering why that is.

Allison Freedman: Yeah, so it’s true. I had this new job. My health insurance was our family health insurance, and I was terrified that I wouldn’t be able to go forward the way I was trying to, which was to work through the treatment if I told too many people. I did tell the people on my team and at work that needed to know. It was really on a need to know basis. I felt so vulnerable and so broken that I was afraid to say, hey, I have this thing, this cancer. People have different reactions to cancer. People have had so many different experiences with cancer or with other illnesses or injuries in their own life. And I started to become very sensitive to how other people receive that news. And that pushed me into this place where I didn’t really want to talk about it. I didn’t really want to share this information. I was afraid how people might see me and if I would be treated differently because I had cancer, and again, I got so much support, but I still showed up and did the work, and I wanted to be sure that I had the opportunity to do that without being judged or pre-judged, or I didn’t want to get off this track. It felt so one step at a time, but it felt like at least there was a treatment option and I was going to go down that path, and I was really, really, really focused on that. And it became, over time, I don’t need to talk about this. I got through that. I’m just going to keep going forward. And I sort of compartmentalized it and put it behind me and didn’t talk about it for years.

Daniel Levine: You said there were treatment options, but what was the course of treatment you went through? And I know you said you had a bone marrow transplant, but I take it that’s not generally a starting point.

Allison Freedman: Yeah, multiple myeloma is a really complex type of cancer because it is the multiple forms of it. I think that the treatment I got was pretty standard at the time, but I’m so lucky that even the year after I was diagnosed, there were so many more treatments approved. So even now, that might not be standard, but at the time I did a three month it’s what’s called induction therapy, included chemo, that prepared me for what ultimately would be a stem cell transplant, which I didn’t know anything about at the time because it wasn’t until I was able to be successful in the induction—the first round of treatment—that I was able to be a good candidate for stem cell transplant or bone marrow transplant. So, when I went through—just within six months, I had done both of those and to think that I had just a few months to diagnosis and then within six months had done this induction therapy, I had collected my own stem cells and my transplant was with my own stem cells. So it’s truly amazing, truly amazing. But it’s done in-patient and it does basically give you a brand new immune system. So you’re like a little kid again, you got all your immunizations from scratch and you’re super high risk of infection, and potentially I’ll be immunocompromised for the rest of my life, but you’re really, really, really immunocompromised at that beginning part. And then for me, and again, everyone’s experience with multiple myeloma may be slightly different, following the stem cell transplant, I was placed on a maintenance therapy.

Daniel Levine: I understand at one point you actually became bedridden and were thinking about hospice care. What happened?

Allison Freedman: Yeah. Well, I went from being this active mom to this, you have cancer, and I was trying to juggle the work, so I just took my laptop into bed with me and I pretty much didn’t leave for most of that time given the treatment that I was in the middle of and I was exhausted. And basically, if I wasn’t at the hospital getting treatment actively, I was pretty much working from my bed or sleeping in my bed. And then following transplant, there’s just not enough time to sleep. There’s very, very extreme exhaustion and fatigue. And so, I did a lot of parenting from my bed. I did a lot of working from my bed and I really just couldn’t remember that I used to get out and do things.

Daniel Levine: What was it like to ultimately recover from the disease?

Allison Freedman: There wasn’t really one moment because it was maybe a year after I was diagnosed or close to a year when I said, I think we can do a one night trip to the mountains if we drive and if I can just sit in the car mostly. So trying to really, my focus was on creating memories with my kids. I really couldn’t see past that at the time. And so I would create these little first very short road trips and then longer road trips, but they allowed me to be in control of my environment since I was tired a lot. We went to all the national parks and visited friends, and that was so important to me in that first year or two. And then as my hair started to grow back and I got to get back to traveling at work, I was surprised. I just all of a sudden realized that I was doing more and then Covid happened. Because I am immunocompromised, I was pretty locked down during Covid, so it wasn’t really, there was a little bit of a blip in there. And then during Covid, I started walking, simply walking everywhere I could with a mask or without a mask depending on where it was in the progression of what we were all dealing with at the time. And it wasn’t until after that, and again, now we’re almost seven years past diagnosis, I’m thinking, wow, I can get out and do more. I think I need to figure out this back situation because I did have a broken back at the time of diagnosis, and it was keeping me from a lot of the activities that I had once loved to do.

Daniel Levine: And did you need to do something to address your back problem?

Allison Freedman: Yeah, so started talking to my oncologist who sent me to another doctor, another doctor… so I went through the process of determining how I could make my back stronger so that I could get back to the active life that I wanted to live here with my kids and my friends. And that involved a really serious back surgery, and I started getting ready for it. I spent about a year and a half getting ready for that surgery, and at the same time, I found myself a new doctor that I added to my team. She’s here, local in Boulder, and deals with a lot of athletes who are recovering from injuries. And she put me with a PT (physical therapist) and I started working with this PT and then I was coming out of Covid and I missed my friends desperately in my community. So I started walking with them. They joined me, I joined them. We went on hikes, and that eventually became me hiking all the time and determining that I didn’t maybe need to do that back surgery, that I had gotten much stronger through the PT and the progression of activity that I had allowed myself to do.

Daniel Levine: You were an avid hiker before you got ill. Your oncologist though warned you against robust physical activity. How did you balance that with your ailments and your doctor’s advice and this pent up urge to get out in nature and walk?

Allison Freedman: I think that I am a rule follower and I do what my doctors are telling me. They allow me to get through those initial months and even years and to be in remission following my transplant. So I was living this life that I just couldn’t see that I would have at the very beginning. And I did follow all the rules, but I did push on what I could do. And if they told me I could do a little bit of walking, I did a little bit of walking and then maybe a little bit more so they said no running. I might’ve jogged a little bit on some of my walks. I mean, I would just push a little bit here and there. And then I worked really closely with my PT on how the body can support the parts that are hurting and less strong by strengthening the parts around them. Basically, I focused so much on that she would literally be in my head as I was walking about my posture to support my back so that I could safely walk and maybe walk a little bit further the next day and a little bit further the next day. And then I came up with this crazy idea, and it was just a friend of mine hanging out, and we wanted to do a fourteener, so to climb to 14,000—it’s a thing people do out here in Colorado, and we were going to try it, and I didn’t know if I could do it. And that was just one of those things that I would go with someone that I trusted and we would just do a little bit more. And through those years, I just started hiking more and more and more.

Daniel Levine: So, I have to laugh because you’re describing yourself as a rule follower who just did a little bit more than was okay. But at age 50, you decided to plan a trek to the top of Mount Kilimanjaro in Tanzania. Why was that and how did you break it to your oncologist?

Allison Freedman: I actually heard of this opportunity as I had just been doing a lot more hiking, and the opportunity was closely connected to the multiple myeloma community, and it was an opportunity to raise money for multiple myeloma and to travel with other people connected to multiple myeloma. And it was to go to Kilimanjaro. And it coincidentally was the year of my 50th birthday. And I thought, I think this is what I’m going to do. And for me it was, I’m going to challenge myself to train for this. And I completely accepted that I might not make it. I had no idea if my cancer would return in the time between me signing up for this event and getting there. I had no idea if my body could carry me through the training, let alone through the hike itself. I didn’t even understand what was involved. I knew it was a big challenge. I knew that I was capable of more. I had already felt a little bit of that, that I was capable of more than maybe I saw at the time, and I wanted to try. And at the time, now my kids are teenagers, and I thought, if I’m not going to try to get the most and live the most of my life, how can I want that for them? So I wanted to model that for them. And part of that was actually, I would say, coming clean and starting to share with people what I had been through and telling people that maybe weren’t aware that this was a part of my recent past and this was an illness that I still deal with every day, every week, every month, whatever it is. It’s a part of who I am, and I wanted to start to share that story, and it became really important and it felt like the right thing to do, became an opportunity to bring all those things together.

Daniel Levine: I imagine many listeners might’ve heard of Mount Kilimanjaro, but what does it take to scale that? Can you give a sense of how demanding a hike that is and what you had to do to prepare for it?

Allison Freedman: Yeah, so separate from the fundraising and talking about my illness, which I hadn’t done before, I had to get my body ready for this hike to 19,000 plus feet. So the fourteeners that people hike here in Colorado are pretty challenging, really high altitude to be at. You have to get your body ready for that, as well as the trek itself and just the walking. But I do have a little bit of an advantage. I do live here in Boulder and I have easy access to altitude to train at, and that is a key part of the training. But you also have to hike for eight days the whole day. That was my job for those eight days that we were on the mountain is we were, I think it was 45 miles of hiking in eight days at altitude. We obviously started at much lower, but quickly got to altitude. And so, for me it was increasing those hikes with friends. So, some people would recommend clothing and gear that you can use at that high altitude when it’s freezing, even if it’s really warm much lower. Some people donated, some people hiked with me, planned hikes for me with me. But basically, for about four to six months, I spent every waking moment planning my next hike or being on a hike. And that meant before work, after work every weekend. I would take a couple days off here and there and just hike as much as I possibly could.

Daniel Levine: You are in remission today. What does that require in terms of being monitored or continuing any treatment regimen?

Allison Freedman: Yeah, again, I had never heard of multiple myeloma when I was diagnosed, but there are these amazing teams of doctors who provide care, and I’m closely connected to those care teams. And I currently mostly take supportive medication, which is take one drug that keeps the myeloma away, and then I take mostly, and when I say supportive medications as someone who’s been through a stem cell transplant and all the treatment that I had, sometimes the rest of my systems need a lot of support, including my immune system. And it takes me being vigilant about caring for my body and being super connected to it to make sure that I am not getting sick, and if I do get sick, I need care a little bit more promptly sometimes than the average 50-year-old.

Daniel Levine: After not wanting to talk about your condition or revisiting those difficult times, you’re now doing patient advocacy. What changed your mind about all that?

Allison Freedman: Yeah, it happened kind of in these phases because of being so sick, a diagnosis, and then having Covid—having this new opportunity to really, really just live a life that I find so much meaning in and in those phases those first moments, they’re so scary and I felt so isolated. I was at home, all I could see was like, how many more days will I have with my kids and how can I just stay alive a little bit longer? I really couldn’t see ahead and especially with the two fronts that I was faced with—the cancer diagnosis as well as the broken back. And if I could have had a conversation with someone and met the people that I met climbing Kilimanjaro at that moment, I would’ve felt that I had this community of people to talk about it with. And I didn’t have that at the time. So now where I am today is I want so much to be able to encourage people to dream and to hope that all these incredible medical advances provide opportunities for more and more years of really, really meaningful lives, even with a cancer diagnosis. Yeah, it’s scary. It’s totally uncertain, and everyone’s path will look different, but there are so many opportunities, and as long as I’m here, I’m going to keep fighting for them, for myself, for my family, and for anyone that I can that’s around me.

Daniel Levine: After not wanting to talk about your condition or revisiting those difficult times, you’re now doing patient advocacy. What changed your mind about that?

Allison Freedman: At the time of diagnosis, I was so sick, and it was just minute by minute and so difficult, sometimes just to get through the day. But as I got stronger over the years and as I began to become more active and be more engaged, my kids got older and I moved through my job and my life and started to look back. I remembered that feeling of being so scared and so isolated, and I was actually having a conversation at one of my monthly lab draws with one of the nurses who knew me back then, who saw me then. And she was saying how she just was amazed by how far I’d come, and I thought, wow, if I could have had a conversation with someone like that, I could have shared, had someone to share with me the possibility that could be ahead of me. All those years, I couldn’t see it. At the time I really couldn’t. And so, I started to talk more about it, and I did find an opportunity to team up with GSK and promote blood cancer awareness and multiple myeloma awareness. And this was also of not just trekking up a mountain, but talking about what I had been through with people so that they would then bring their friends to me and say, my friend’s going through this. My friend’s mom is going through this. Can you talk to them? I’ve talked to every one of those people. I became a formal mentor through an organization and have been able to meet other people who are similar ages as I was at diagnosis going through this, and I was able to talk about my experience and listen to them, go through their experience. And that has been incredibly valuable to me. But mostly at this point, I think about it a lot, about the impact that knowing other people that are going through something and knowing people that have gone through something that’s familiar to you, how much it helps and how much it supports you and encourages you to try to keep going even when it’s really, really, really, really hard. And my kids too, I wanted my kids to understand that things are going to be challenging, but you can seek support. And I wanted to be that support for someone else as well and to model that for them.

Daniel Levine: Alison Freedman, multiple myeloma patient advocate. Alison, thanks so much for your time today.

Allison Freedman: Thank you so much.

This transcript has been lightly edited for clarity and readability.

The RARECast podcast is made possible through support from the Global Genes’ Corporate Alliance. The members of the Corporate Alliance support Global Genes’ mission and programs, work to meet the vital needs of people with rare diseases, and address inequities they face. To learn more about the Corporate Alliance or how your organization can become a member, click here.