Complementary therapies and metastatic breast cancer: Amanda’s story

A full-time speech language pathologist, wife, and mom of three children, Amanda was originally diagnosed with stage II breast cancer in 2014. Afterwards, she had believed she was “good and cleared to go,” and maintained life as she always had, with a self-described “Groundhog’s Day” routine, every day on a tight schedule for every family member. In 2018, however, when Amanda was diagnosed with metastatic breast cancer, her life had to change.

Though Amanda had always been there for all her children’s events, contributed to all the school events, and handmade all the holiday treats, now she had to learn to take a back seat. It wasn’t easy, even with a very supportive network of family and friends.

Amanda has prioritized her health and well-being in other ways. To mitigate some of the side effects from her breast cancer treatment, she actively seeks out whole body approaches she jokingly refers to as “crunchy.” Practices like infrared sauna sessions, cranial sacral and visceral massages, and float therapy have helped her in myriad ways to manage pain, have more energy, and feel good.

What “flipped the switch” for her? Two days after her metastatic breast cancer diagnosis, her husband arranged for them to attend Living Beyond Breast Cancer’s Annual Conference on Metastatic Breast Cancer. She had been furious—initially.

At the mets conference, she learned there could be life after stage IV. There could be life with stage IV.

Now Amanda wants to share her story because she wants you to know that you CAN learn to live well with metastatic breast cancer, because she DID. Learn about Amanda’s experiences and discover her coping strategies as she narrates her story and then chats with Jean Sachs, LBBC’s CEO, in this episode.

Listen to Amanda's story below or read the read the transcript.

After you've finished listening, please let us know what you think in this survey.

Transcript

Amanda (00:00):

Before I was first diagnosed with breast cancer, I was very go, go, go. We had a schedule, we had to maintain the schedule. After diagnosis, a lot of things really, really changed and I've just become a lot more comfortable in my skin.

Jean (00:19):
Welcome to Can and Did Conversations: Candid conversations with young women diagnosed with breast cancer. I am Jean Sachs, the CEO of Living Beyond Breast Cancer. I want to thank you for listening to these authentic and inspirational stories. In this episode, Amanda, a wife and a mom of three young children shares her story of how she learned to thrive after her diagnosis of metastatic breast cancer. Afterwards, I will take a few moments to chat with Amanda about some of her experiences. Now let's listen to her story.

Amanda (01:06):
I currently reside in Macomb, Michigan, so in the metro Detroit area. I am a speech language pathologist at a preschool and I have three crazy kids, three crazy dog, an extremely supportive husband spend. I now am living with stage IV metastatic breast cancer. I had stage II breast cancer back in 2014. Thought I was good and cleared to go and it returned within my bones. So it was kind of one of those like, wait a minute, I already rang the bell. I didn't know if you didn't have the working parts anymore, your diagnosis would still come back. So just learning how to live my life through having a diagnosis.

(01:56):
I was an elementary school teacher, so I taught in a classroom eight o'clock until four o'clock full-time. Mom, obviously at home I was taking my master's classes to be a speech language pathologist, so it was a very long day. You know, it was just one of those where you look back and you're like, oh my gosh, why in the world would I put myself through that? And honestly, I wouldn't have been able to do as much as I did without having the support of my husband. He really picked up a lot of slack and you know, was a really good team partner. But yeah, it was pretty much every single day was like Groundhog’s Day, get the kids up, ready to go, take 'em to the sitters, go to work, come home and jump online to finish up that degree.

(02:54):
So it was one of those on the outside I always like to present very much in control of the situation. Very alert, very caretaker in a sense where, you know, I want to be there for all of my children's events. I want to be there for all of the different bake sales or all the different games. I remember my son, he had a mommy and me day where the mommies got to come in and the kids got to put makeup on their moms. So I just remember I was so excited for that, but I couldn't go. I had a chemo appointment and it's one of those, once you get on track with that, it's, at least in my situation, it was impossible to reschedule anything. Like I had to work around that schedule, not work around any other schedules. So I just remember being frustrated, crying, you know, of course everybody goes through the “why me’s” and it's hard, but I just remember that was the first time that I physically reached out to somebody for help. And you know, I had a, have a very supportive family, have a very supportive neighborhood family and friends and such like that. But being vulnerable when you're not open to being vulnerable was one of the most difficult things.

(04:20):
So I reached out to the individual, she was the kid's babysitter when I was going through school and she was overjoyed in my brain. I was so upset I wasn't there. But just seeing how excited my son was. Yeah, I'm sure he, he was in first grade at the time, so yeah, I'm sure he was a little bummed I wasn't there. But the fact that he had somebody there one-on-one with him, to me it was a bigger deal to him. Miss Sandy was there, you know, putting makeup on, having a great old time. So going through the pictures and just hearing how much fun they had, it just kind of made me kind of reflect a little bit and take a backseat. Not necessarily one I wanted to take, but one that I realized that I needed to start taking just because I wanted the kids to be able to experience different things. Honestly now I have bad days, but the good days are so much more than the poor days. And I really think it's just because I have just kind of, I'm starting to beat to my own drum. I'm starting to be more aware of my body. I have finally found different things that are working for me and helping me have more energy, helping me just have more of a positive attitude. I'm doing pretty good.

(05:46):
The couple different things that I have kind of added into my repertoire now. We bought an infrared sauna. We have different light settings for different things. It helps with stress, it helps with headaches and such like that. What it does is it just kind of detoxes your body. It pushes out different things out of your pores and it basically helps you to sweat it out. It's a dry heat and it just, it helps with pain management. With my cancer being in my bones a lot, I have a lot of arthritis and I have a lot of pain. A lot of the times I always joke that externally I am a 40 year old, but internally I feel like I'm 85, especially when the barometer changes.

(06:37):
Now I'm seeing a cranial sacral therapist. So it's a gentle massage of the head. So envision yourself taking two hands and putting your hands on top of your head. The cranial sacral therapist, what they do is they just gently massage and it is like the tiniest, tiniest feather lake pinch. So what it does is, is it starts to alleviate and release different tension throughout the body. It's just the most amazing feeling it has gotten so that I have a relaxed state of body for a good four days afterwards with no side effects from medication. Since I've started doing this, it's also decreased my migraines significantly.

(07:22):
It's visceral therapy as well, very similar to cranial sacral therapy. And it's a gentle massage light, light touch. But instead of working on the head, you're working on different organs in different parts of the body. For instance, I have always had stomach issues ever since chemo, I have worse stomach issues just because different things have happened. So she is able to open up the track where the food comes down, open up the intestines, allowing that pathway to open up. A lot of medications that I have been on or a couple that I still have to take, they cause my liver enzymes to escalate a lot when I go to my different doctor's appointments. So she's able to detox and drain that. So we have up here in Michigan, they're called the float institutes. They're basically just salt bathhouses and what it is, is it reactivates, what the dead sea effect would feel like.

(08:32):
There is so many gallons of epsom salt, there's so many gallons of pink Himalayan salt, so many gallons of different minerals and such like that that they dump into this giant tub. And what you do, you go in, you rinse off and you have your own private rooms. It's up to you how you want to go in a bathing suit or not. But you go in and your body floats not above the water but right in the middle of the water. So you're still covered. But what it does is it allows all these different enzymes and all these different minerals to soak into the pores. And so what it does is it pushes all the toxins out of the body as opposed to pulling them up like the infrared sauna does. And with that, what it helps is it helps with inflammation, it helps with pain management, it helps so that way, just the same as the cranial sacral, you're able to stretch your neck in different spots. You're able to manipulate your body into different areas. It's like the water is giving you a giant hug, you are comfortable, you are gray, it's dark, you are just there just floating able to reflect on anything you want. You're able to just be in your own little personal bubble, and it is phenomenal. You get out, you rinse off, the detoxing starts on top of that, your skin is so pure and moistened from all of the different salts. It's like you have like a head to toe exfoliation.

(10:10):
I don't like taking medication bean stage IV. There's a lot of medication that I need to take or I'm supposed to take. But all these different medications, you know, I trust my doctors, that is their scope, but my body doesn't take it to a lot of the different things. So even though I'm supposed to take certain things, it causes negative effects. Headaches, constipation, diarrhea, just body fatigue. With these vast different options, they help so that actually been able to not have to take certain medicines because my body is starting to self-generate. It's starting to make my liver enzymes where they need to be. Overall, it's just really helping me with a whole body approach as opposed to just targeting the cancer itself. Not only does it make you feel better, but having the diagnosis that I do, I feel that I'm at the mercy of it.

(11:14):
Most days you don't feel like you have a lot of empowerment. You see your friends struggling with the same diagnosis, you see some of them pass away and that's horrible. It's hard not to think like, oh my goodness, is that going to happen to me soon? Obviously we all die, we all perish. But having a disease that is terminal probability wise, you're probably more likely than others to think about death on a regular basis. So just being able to feel like I am helping my body, helping my mind, it makes it so that, I don't know, it just rubs me back up. It makes me think about again, you know, going out on the basketball court with that fun-filled warmup music, I feel like I'm taking a bit of control back, taking a bit more of Amanda back as opposed to thinking of myself as a cancer patient. Now I can look back and think about myself as a person. So it's, it's definitely a mind game having this diagnosis.

(12:21):
Yeah, there are so many different nonprofits, so many different organizations out there that are able to provide different support. I can think of just a couple within our small little community that they want to help, you know. But a lot of times people don't realize that they can go out and they can search for different support with medical support or support for groceries, different things like that. And I know groceries don't necessarily cover the cost of cranial sacral or visceral, but there are so many different avenues out there to maneuver. A lot of infrared saunas, they are within different gyms. So a Planet Fitness, different areas like that. I know quite a few of the homeopathic doctors' offices that we have around the metro Detroit area have these right there within the facilities. And you can buy one a package, you can buy multiple packages.

(13:19):
A lot of times people ask, you know, me, or they ask my husband just normally because I tell them I don't want anything. But you know, hey, what would Amanda like for Christmas? Or what would be a good way that we can help support? Okay, buyer a, a afloat, buy her like percentage off of a therapy. Different avenues like that. I know every situation is different, but there are definitely ways out there to make it known. And a lot of times too with different hospitals, they have different therapists and different patient care coordinators that have different knowledge about these different facilities as well. The one big life-changing moment for me was going to the Living Beyond Breast Cancer metastatic conference. I was diagnosed two days prior to knowing anything about this conference and the next thing I know, my husband has boughten plane tickets, he has booked a hotel. Nobody we knew knew anything about what metastatic was. People were calling it different names. We didn't even know how to pronounce it appropriately. Oh, I went kind of kicking and screaming. I did not want to go.

(14:36):
I am not about kumbayas. When people come up to me like, ‘oh, I'm so sorry,’ those kind of things, it's not me. So I was anticipating that the conference was going to be all about that. It was the complete opposite. It had all of these powerful men and women just discussing different topics. Of course there was breakout sessions where you could tailor it to yourself. They had nutrition, they had, okay, you have triple three, you have this. I didn't know there was so many different forms of stage IV, anything. It was overwhelming but overwhelming in the best. Wow. We were able just to learn so much, not even only about the diagnosis, but about how to communicate through the diagnosis about how to be a self-advocate. For me that really just kind of turned the page and just really opened my eyes to a completely new fast of life.

(15:41):
And it just really has really driven my husband and I to have so many different thoughts about different things and just more of a sense of peace where we know people like us. My husband has people he can reach out to that are men that are caregivers. I have multiple women of different walks of life that if I need to or want to reach out to them or if I have somebody that I know is newly diagnosed and they are dealing with this, I know who I can relay them to. There's so many different organizations that are great. But for me that turning point was when I went to that conference.

(16:25):
When I was initially diagnosed, I really didn't have support. I look at my social media now, I'm like, wow, look at all these people that are like me or look at all of these different organizations that I know firsthand are good organizations that give back to the community. I feel horrible for how I was acting towards my husband. I was so mad at him. I was okay with the diagnosis. I just needed to work through it on my own. I wasn't ready to work through it with other people. I wasn't ready to let other people come into my space. I was just furious with him. But when we got to the conference and as soon as we sat down, everything just changed. The energy was different. The people we were at the table with, I looked around and they were just as terrified and just as upset with whoever brought them as well.

(17:27):
And I remember it was such a moving thing. The guest speaker told us, okay, sit down if you have been diagnosed for two years, sit down if you have been diagnosed for five years or more. Different things like that. And seeing the amount of people still standing when in my brain stage IV equals terminal, seeing how many of those people were still standing, they were smiling, they were whooping it up. They were just so happy to be there and just so proud. It just really helped flip the switch for me. Helped think like, okay, there is going to be life after stage IV, there's going to be life with stage IV and I want to be like that lady over there that is 15 years in, having the best time of her life, because you know that she had some good years with having that diagnosis and the people around her, you could just tell she was just a real beacon of light for them. And that's when I was very apologetic to my husband. I never told him I, he was right and I was wrong obviously, but the script was definitely flipped. I had a much more open mind and that's when I started just becoming a newer version of myself.

(19:06):
I have changed in so many different ways. Before I was first diagnosed with breast cancer, I was very rigid in a sense where I did not like to go out of my, my safe box. I didn't like to take risks. I was very goal-oriented in a sense where I needed to climb the professional ladder. I had to make sure that all my kids had Valentine's, that were homemade costumes that were put together, inappropriate and just I guess very attempting to be a Stepford housewife without being a housewife after diagnosis. A lot of things really, really changed. Just reflecting back on it, it just, I really feel like I am kind of like a metamorphosis in a sense, and I'm getting a chance to kind of be a new person. I'm actually really thankful for that. In an odd way of saying it. I've just become a lot more comfortable in my skin, much more comfortable as a person in general and as a collective whole.

Jean (20:17):

Amanda, I so enjoyed listening to your story and I'm so happy that we have a few minutes to talk. It's great to have you with us.

Amanda (20:25):

Thank you so much. It's truly an honor to be here.

Jean (20:28):
I think one of my favorite parts was when you said, you know, you rang the bell, and you thought you were finished, and you didn't know that if you didn't have the working parts, how could it come back? I think that captures what so many women feel. You know, if I had the mastectomy, the double mastectomy, and I took the lymph nodes out, how did this cancer come back? That's what it was like for you, right?

Amanda (20:54):

It completely was. In hindsight, I think we all kind of reflect back on decisions or choices that we've made in the past. I really did not do a lot of research. I truly did not know a lot about my diagnosis. I just kind of listened to my doctors, which they were fantastic. Went through the motions that I was told to go through. And when my last chemo session was finished, I was able to ring the bell and in my brain that that was it. Like I am now considered a survivor. I can wear that ribbon with pride. And then when it did come back, I was completely shocked. I mean there was so many different words for it, but that's one thing you don't envision. Obviously growing up as a child you don't ever envision that you're going to be diagnosed with a disease and then all of a sudden be rediagnosed with a disease. So it was definitely quite a learning curve, knowing now what I do. I just wish I could go back into the future Marty McFly style.

Jean (21:54):

I think you're not alone in that feeling when you finish treatment for early stage. The last thing you want to think about is could this cancer come back in another part of my body? So I just thought you captured that. Well. It certainly seems, Amanda, that you have found a whole new way of living and a lot more inner peace and a lot of positivity, which is really impressive. So just wanted to share that. I really applaud you for seeking out things that make you feel better when you're taking drugs that really deplete you.

Amanda (22:30):

Thank you. I really appreciate that.

Jean (22:32):

And I think you did a nice job of talking about how these integrative therapies are expensive and often people don't know how to access them. So I appreciated that you gave some suggestions of, you know, how people might be able to access this kind of care. But it often does feel like a luxury, right?

Amanda (22:52):

It truly does.

Jean (22:53):

Yeah. I think your description of being in the sauna absolutely made me want to get a sauna!

Amanda (23:00):

It's definitely our go-to for everything, not just for myself, but I mean once our, my kids start getting those aches and pains or you know, you see that something, something's a-brewing, just putting them in there, letting them get those toxins out, letting them just kind of restart. I think it's a huge thing for all of us and it is pretty relaxing. You get to put yourself in time out, which I think as an adult, I love putting myself in time out. So it's something that's good for the body. Plus it gives you benefits, definitely with reflections to the mind. I definitely think you should try it, Jean.

Jean (23:35):

And I also just want to say that I think it's incredible that you came to Living Beyond Breast Cancer's metastatic conference just a few days after you were diagnosed, and it was your husband who made that happen. I actually remember seeing the two of you and meeting you, and I think that is often a barrier for people. You explained it so well, they don't want to go into a room with a lot of other people that might, that have metastatic breast cancer, but I so appreciate that you talked about at the end, it really, it transformed your experience, really jump-started your education as well as your community of support. So I love that you really shared how valuable that experience was.

Amanda (24:23):

It was truly a game changer for me and just really gave me a rebirth in a sense.

Jean (24:29):

Yeah. And we are so happy to have you part of Living Beyond Breast Cancer, being a young advocate and always being willing to step up and help us. So, thank you for sharing your story, and I look forward to our listeners learning and getting inspired by you.

Amanda (24:45):

Thank you so much, Jean.

Jean (24:48):
Can and did Conversations is a production of Living Beyond Breast Cancer. This episode was edited by Adriana Lecuona and produced by Jonathan Pfeffer. Listen to our other episodes on Apple Podcasts and Spotify or on our website LBBC.org. Do you need support? LBBC's Helpline Volunteers are ready to listen. Visit www.LBBC.org/helpline to get connected. Many thanks to the Center for Disease Control and Prevention for their support of this series.