[00:00:00] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.com.
From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
When today’s guest was diagnosed with metastatic breast cancer that had spread throughout her skeletal system, her daughters were ages 2, 4, and 6 and she knew that her children would never have a memory of her without cancer being in it. She decided immediately that she needed to be intentional about how she used living with cancer as a tool to help shape them.
Here today to share how she focuses on protecting her bones, living her healthiest life and giving others the tools to do the same is Lauren Huffmaster. Lauren, welcome to the show!
[00:01:00] Lauren Huffmaster: Thank you so much.
[00:01:01] Adam Walker: I really liked that intentionality. So let’s get started. I want to hear about your breast cancer story. Tell us about your original diagnosis your early treatments and when and how you found out that it had spread to your bones.
[00:01:14] Lauren Huffmaster: Well, I was a young mom. Obviously with the ages of my children being two, four, and six, I had either been pregnant or breastfeeding for a long time.
And so I just finished breastfeeding my daughter when I found some lumps in my breasts and I thought, you know, I don’t even remember what they’re supposed to feel like at this point, like who, you know, I just rolled with it, whatever. And I wrote it off as no big deal. And then a few months later I noticed that they had not gone away and resolved and then I found out that they’re probably growing.
And so that obviously set off alarms in my head. But I was under the age of 40 and so mammograms were not standard of care. And so one day I was, I was driving my kids home from school. And I was a teacher, so I was driving myself home from school and I saw a mammogram bus and I was like, should I go in like, or just go home?
I don’t know what I’m supposed to do at this moment and unfortunately, I did put it off. I did not get a mammogram at that time. And as, as I realized this bump was going to grow, I later went in and got diagnosed with stage three cancer. And I started out stage three cancer, did every possible treatment.
I really wanted to be very aggressive in my treatment style. So anything that’s been done, I, I did it. Surgeries, radiation, chemo, you name it. We did it. We had a double mastectomy and then on my very last surgery, we were going to go in for an oophorectomy to have my ovaries removed and they did a PET scan as making sure we had clean margins and all of that.
And at that point they found out I had cancer in my bones and so I hadn’t even completed my stage three treatments when I was already diagnosed with stage four. And of course that was really hard. The cancer was all through my bones. I went ahead with my oophorectomy and the moment I woke up, I was like, give me some treatment, let’s start killing this some more.
And I’ve been at it ever since.
[00:03:20] Adam Walker: I like that attitude. That’s a great way to look at it, you know, get to work and make it happen. So I know you’re an advocate for healthy living in all areas. But specifically about knowing your body. So tell our listeners why it’s so important to know your body and how that has helped you.
[00:03:37] Lauren Huffmaster: I have been in treatment for seven years at this point and so there’s a ton of data. And I think this idea of data and data points is very important for me and I think this is the way medical, the medical field looks at us as patients is, all of these data points. And often we want to make really quick changes or we want information about how well things are going in short amounts of time, but really the most important thing is knowing your data over time.
And so for me I do, I pay very close attention to my body. I, because of the cancer in my bones, calcium is a really important thing for me to watch. So I pay attention to the, honestly the quality of my fingernails, the quality of my hair. And that tells me a little bit about the quality of my bones. How much calcium absorbing, how strong they are at the moment.
And as soon as I see something going off, I will change my calcium regimen. I’ll figure things out a little differently until I see everything’s sort of going back into the, the right direction. But I watched those data points in all of my blood work. And I can, I know. And the good part about this is you don’t forget as much, right?
Like I know that after Christmas, my blood work won’t be great. Cause I ate really poorly. I made bad choices. But that doesn’t mean in January, I’m going to freak out every single year. I’m going to say, oh, that was Christmas. Now let’s move it back in the right direction and keep things going. Also, it just really gives you a sense of assurance of what’s happening in your body, on what you can do to make those things a little different.
[00:05:10] Adam Walker: Yeah. I love that. You mentioned like checking your fingernails and checking your hair. Like it never, ever occurred to me that can be an indicator of your overall health. But now that you, as soon as you said it, I was like, well, of course that makes perfect sense. Right. But but we just don’t think about those things and we should think about those things.
So so w we mentioned earlier, I think you mentioned earlier too, that your kids were young when you were diagnosed. Like, how did that impact your whole approach to this? I mean, I think we’ve sort of hinted at it, but I’d love for you to just elaborate on that.
[00:05:39] Lauren Huffmaster: For sure. Yeah. I watch my kids and this is really important to me. Cancer’s not just about the patient. Right. Everyone in my family is going through cancer. It’s impacting our conversations, our choices, everything. And so when I was first diagnosed, especially in my stage three moments when all of those very dramatic changes were happening in my body. My children could see me go bald and have scars and tubes and all sorts of things.
And I watched my kids and realized they weren’t acting like kids. Like they weren’t giggling and skipping through the halls and things like that, things kids should do. And I try to start thinking from their perspective and I realized that we’ve been in cancer treatments for years. And when you’re this age, that’s all you remember. Right.
And we, everything in our life was scheduled around the next level round of treatment. And I realized from them when they looked forward, all they could think of as sort of the bad things. Like, oh, in three months we’re going to do another surgery, and another three months we’ll do another surgery, and they just gotten rhythms where all they’re expecting is sort of negative things in their future.
As soon as I acknowledged this, I had to make a change. Right? And what we did as a family, Again tiny shifts in conversation and perspective. And every Wednesday we decided to do what we called a family adventure. And we just told the kids we would do something fun, but we didn’t tell them what it was and they didn’t care.
It was just something that every week they knew as a family, we’re going to be together and do something good. And within a month I saw that laughter return. I literally watched my daughter skip down the road and it clicked in my brain. Like she just needed something good to look forward to. And once I internalized that, fed that a little bit more, cultivated it in my home, I realized this is really key and I wanted to start giving it away to others and really help spread this mentality. That what we talk about, what we focus on is deeply impacting our children as well.
[00:07:44] Adam Walker: Man. I love that. I mean, you’re so right. Like having something for anyone to look forward to, it’s just so, so important. And I think it’s easy, it’s really easy to lose sight of that and get mired down in sort of the day to day, whatever.
So I really appreciate you bringing that up. I understand that you’ve got a foundation and you do a lot of good work. So I’d love for you to just tell me more about that. What’s that?
[00:08:09] Lauren Huffmaster: Definitely. As soon as I was diagnosed with stage four, I knew that this wasn’t just a blip on my screen. This wasn’t just a moment in time.
This was going to be my lifetime and I wanted to do something meaningful through the circumstance and so I began with this idea of my children, just giving people something to look forward to giving them this, we call it Adventure Therapy Foundation, because really it’s this idea that if you can look forward to doing something, taking a little risk, laughing, being out of your comfort zone a little bit, it really does help you shed off some of the things maybe you’ve picked up along the way through your treatments that you didn’t even recognize.
And so it is therapeutic and everything we do is definitely based in nature as well and that’s therapeutic as well. But, as I moved forward in the Foundation, but what I realized is what I wanted to do was shift your mindset through the cancer experience. And we now we’ve really focused on addressing what I call the emotional side effects of cancer.
This mental health piece around cancer, especially in early survivorship is not acknowledged nearly enough and we’re doing everything we can to really acknowledge it articulate it, break it down, so we can really understand sort of what we’re feeling and why, and then provide those tools so that family members can also understand and that we know how to lead our families through the cancer experience.
Of course with my children in this stage, it’s really important to me personally, I say, I want to make sure cancer’s not already impacting the next generation, you know, because it could be, if we’re not helping them through this.
They’re already impacted by cancer. And I just can’t, I can’t stand that. I can’t live with that. So we’re going to make sure that people have the opportunity to find the tools they need to bring them and their family mentally healthy through this process.
[00:09:58] Adam Walker: I love that, you know and we’ve talked about a lot of things on this show but the mental health aspect is really just so important.
And I hear it time and time again from guests that, just that, that way of thinking, that thought process, that mental toughness, it’s just so important as you go through this process and not just for you, but for your loved ones as well, right?
[00:10:19] Lauren Huffmaster: Definitely. Definitely. I think, and we, I call my husband and my kids, the co-survivors. They’re surviving cancer too.
Right. But how often are you talking about the experience of the caregiver? You know, and we’re definitely not talking about the experience of the children who are witnessing the cancer and is just shaping them. I’ve spoken to many people who, they watched their parents go through it 40 years ago, and then I start talking about this and they just start bawling because they never were given permission to say I was a part of that too. You know, I experienced this and I didn’t know what to do with it. These kinds of things really shape you and without permission. And again, it’s bringing awareness.
I mean, it seems like such a small thing, but once we’re all saying the same thing, then when I feel depressed or overwhelmed, I feel, I don’t think it’s a secondary problem that only I’m experiencing. Right. I’m saying that’s why, in my words, I say these are the emotional side effects of cancer. These are things we all should experience.
They’re typical. You’re not, you know, it’s not just you who can’t handle this. We’re all going through this and the better we understand that the more likely we’ll be able to move forward quickly and well. Rather than like, stay in that stuck place for a long time.
[00:11:38] Adam Walker: I love that. I love that. That’s so great in supporting people in that way is so, so important.
So I want to go back to talking a little bit more about your MBC diagnosis. Talk to me about scan, is it scanxiety? Is that the term? Scanxiety? And what it’s like every time you have to go back for more scans?
[00:11:58] Lauren Huffmaster: Yeah, I, this is again, I feel it’s pretty universal, scanxiety. The, I, for me, the way I see it is the scan, the first scan is the moment of your trauma, right? That is the moment all began. Your life shifted, your expectations shifted, your dreams sort of became cracked and on, you were unsure and there’s so much uncertainty. And so every time you returned to that table, every time you lay down and you have to show up for those scans and wait for those results, it’s like reliving that initial moment.
And, and every single one holds the potential of that first time, right? So each time you show up your life could stop again, within 24 hours, you’re going to get a call at eight o’clock at night because it’s not good news, right? And so every single time you show up for a scan you’re reliving that trauma and it is so overwhelming.
The weeks before, the week after, as you’re waiting for the results, this is again a typical response to cancer because of the trauma we associate with the disease.
[00:13:03] Adam Walker: Wow. I mean, I hadn’t really thought about that. You’re totally right. And that trauma is very real and it’s important to be dealing with that.
I’m just curious. I mean, did you stop, have you stopped physically doing anything that you used to do? Or how has your life shifted since that first scan?
[00:13:20] Lauren Huffmaster: Yeah, I shifted a lot of things. Of course. I paid really close attention to my body, like we’ve mentioned before and so I looked at what the medications were doing to me.
If I could play around with food, with different kind of. You know, anything to make the the side effects less in my life. And that really helped me a lot at the beginning. The first six months of my treatments, I had a lot of side effects. And then as I watched my food, watched my sleep, looked at my life now with this medication, which should be, I will be on medication for the rest of my life, most likely with metastatic cancer.
And so I wanted to be able to live well with that. And so, yeah, I looked at my food. Really pay attention to how I treat my bones, like we said before. I shifted, I started carrying a backpack instead of a purse because it puts pressure on my spine, it activates my bones there. And so I just did a lot of these little tiny things that other people have no idea.
It’s not like I had to recreate myself. But I did just take a few things out and put a few things in. Pay attention to the minerals I’m getting and the vitamins I’m getting through my food. Be very intentional about nutrition. Not because I think it’s going to cure me, necessarily. But because I know my body needs it.
If I’m going to be taking medication for the rest of my life, we got to fortify my body so it can process that and I don’t get you know, built up in my system. There’s just a lot of little shifts I made. But together they’ve added up and given me a really high quality of life.
[00:14:56] Adam Walker: I love that. So, so you’ve already mentioned a couple of these, but I’m curious if there’s any more. Just kind of thinking about protecting your bones.
You mentioned, you know, carrying a backpack to sort of strengthen your bones. Are you, do you take additional supplements? Do you eat like high calcium foods? Like, I’m just curious as to, if there’s anything else that you can recommend to our listeners related to that.
[00:15:15] Lauren Huffmaster: Yeah, we definitely, when you talk about supplements and calcium. Now, I think I assumed that when I started taking calcium, when I found the right dose, I would be good forever, right? Because if it works today, it should be working for me later.
But what I found was, again, by being paying attention to some of my lab work that a supplement typically only lasted me six to eight months and then my body really wouldn’t process it anymore. And I have to find a different version of that calcium and sort of play around with the levels again.
And then just keep moving because. I don’t know why. I’m not a doctor. But for some reason I could tell that my calcium, I would have to adjust my calcium levels over and over with the supplements. Again, fingernails are the easiest way, my hair breaking of course is really easy, but the fingernails, if I have healthy fingernails, I’m like, I got this one locked in.
I’m good for a while. But things like that. Just paying really close attention. Not assuming that if it’s working today, it’s going to work for you a year from now. Being closed, paying close attention to that as important. But yet anytime you’re walking, take a small backpack put a water bottle and a book in it.
It just an act, your bones are alive, your bones are not like the cartoon with the dog chewing on the thing like this, like solid thing. They’re moving, they’re shaping they’re always changing. And if we tell them we need to be stronger by activating them, carrying that bag, it tells them a lot and they adapt quickly.
And then that helps us be stronger in the long run.
[00:16:43] Adam Walker: Yeah. I’m really glad that you mentioned that part. You know, you took a calcium supplement and only last year for six to eight months. Because never in my life would I have ever imagined that to be the case. Like I would have been the person that would be, oh, I’m taking, I’ve taken calcium for five years.
I’m good to go. What else do I need to do? And it would just never even occurred to me that my body might adapt and not utilize that calcium appropriately. And so like, to your point, that extra step of not just doing the things or eating the foods or taking the supplements, but actually measuring, is this effective?
Am I seeing the results of this? How does my blood work look? How do my fingernails look like? Those things are so critical. But in all honesty, I never would have thought to do that. So thank you for sharing that. That’s really amazing advice.
So with that in mind, actually my last question. I mean, what final advice do you have for listeners about how to live their healthiest life, how to take care of their bones and additional advice there? Or for their families as a whole, as they experience life together and maybe battle through cancer.
[00:17:43] Lauren Huffmaster: Well, I think I’ve given you all my advice I have on the bones. But I do just want to acknowledge the families the partners, the caregivers. These guys really need acknowledgement. My husband talks a lot about how caregivers work, work, work to try to solve the problem for you. But yet they can never solve the problem for you.
And so just the burden of that, knowing that they’re doing everything they can and they just can’t make it go away. Acknowledging our caregivers is just so important. We need each other, you know, when we’re sick or we’re just emotionally having a hard time. Our caregivers carry us through that. But what are we doing to carry them, you know?
And when we’re strong and so I just think it’s really important to look at the whole person, to look at everyone around you, and acknowledge you each other. Acknowledged the mental health aspect of cancer. And please look up my website. We have great conversations recorded there. You can listen into different survivors who are experts in their fields talk about mental health. There’s some good research sources out there. But we have to acknowledge it to ourselves first and then use what’s available.
[00:18:51] Adam Walker: And you mentioned your website. If our listeners want to check it out, what was that website?
[00:18:54] Lauren Huffmaster: AdventureTherapyFoundation.org is my website. And then Rise is our educational program.
[00:18:59] Adam Walker: Alright AdventureTherapyFoundation.org, is that right?
[00:19:03] Lauren Huffmaster: Correct.
[00:19:03] Adam Walker: All right. Well, Lauren, that’s fantastic. Thank you for the good work that you’re doing. Thank you for being an inspiration to our listeners and to so many people in your community. And we just appreciate you joining us on the show today.
[00:19:13] Lauren Huffmaster: No problem. Thank you for having me.
[00:19:17] Adam Walker: This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn more at Amgen.com.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.