Navigating breast cancer and bipolar disorder: Deb’s story

At 20 years old, Deb was diagnosed with chronic bipolar one disorder, PTSD disorder, and an anxiety disorder. The challenges of living with invisible illnesses cast a shadow over Deb’s early adulthood. She struggled to find the right treatment, manage relationships, and cope with these mental health challenges.

In 2016, Deb was a single mom, who was still breastfeeding her daughter. One day she found a lump in her breast and, soon after, she went to a healthcare provider. When the provider on duty suggested it was just a swollen milk duct, Deb recalls, “I felt kind of ridiculous for even assuming it could be cancer.” Two years later, when Deb rediscovered the lump, she went for a mammogram. A series of tests afterwards and Deb had to overcome her shock to deal with yet another significant health concern: metastatic breast cancer.

Now Deb wants to share her story because she wants you to know that you CAN handle breast cancer, because she DID. Learn about Deb’s experiences and discover her coping strategies as she narrates her story and then chats with Jean Sachs, LBBC’s CEO.

Listen to Deb's story below, or read the transcript. After you've finished listening, please let us know what you think in this survey.

Transcript

Deb:
It was just a lot of coming into myself, figuring out who I am living with this chronic illness. And I do believe that that set the groundwork for me to be able to accept a breast cancer diagnosis and deal with it like how I did or am dealing with it because it's metastatic, of course.

Jean:
Welcome to Can and Did Conversations: Candid conversations with young women diagnosed with breast cancer. I am Jean Sachs, CEO of Living Beyond Breast Cancer. I want to thank you for listening to these authentic and inspirational stories. In this episode, Deb tells her story about being diagnosed with metastatic breast cancer and dealing with mental health challenges. She spoke to us from her home in Utah. Afterwards, I will take a few moments to chat with Deb. Now let's listen to her story.

Deb:
When I was diagnosed with breast cancer, I was 37, but at 20 years old I was diagnosed with chronic bipolar one disorder with PTSD disorder and an anxiety disorder. And that has had quite a hold over me over my life for a long time. It really cast a shadow over my twenties, and it was something that took me a long time to navigate navigating treatment, understanding my diagnosis repairing relationships that were being damaged. Others who struggle with bipolar disorder would probably agree. It is not easy. It's a disorder that you fight every single day, and you kind of have to throw your hands up in the air and accept it at times. And it's hard for your loved ones around you to understand because it's an invisible illness. So they're only seeing behaviors and symptoms and, periods of depression or periods of really high mood altered states. And that was something that really kept me down.

I'm dealing with my mental illness. I'm dealing with single motherhood. I'm dealing with fighting against domestic violence. And I go in, in 2016 for a lump that I feel, and I just thought to myself, I'll just mention it at my regular my pelvic exam, those types of appointments that women are supposed to get. And the provider that I wanted to see was not available that day. So, because I'm a busy mom, I was like, I'll just take whoever's on call, and I go in for the lump, and I'm already, I'll be honest, like it's overwhelming. I was already overwhelmed with everything. So I was not paying a lot of attention to my physical health. And I felt kind of ridiculous too because I was young. So, I was like, there's no history of cancer in my family.

And not that I know of, again, since I was adopted, I didn't have the biological component there, but I was really I just kind of went in and, but I was like, “Hey, I have a lump here, I don't know what this is. check it out.” And I felt kind of, I wouldn't say ridiculed, but I felt like I was ridiculous for even assuming that it could be cancer. And the provider on duty was like, “No, you know what? You're a breastfeeding mom.” Because I was still breastfeeding. “It's probably just a swollen milk duck.” I felt like a child almost like chastised, like, oh, how dare I think it was something worse. And I just let it go. I said, okay, this is their lane. They're doctors. I'm not. I'm busy. Nothing to worry about. I'm going to keep going about my life. Two years go by, and I'm now dating, entering relationships. I'm feeling good. I'm feeling like I'm in a good place with my medication. I'm feeling like I'm in a good place with these issues that I'm dealing with outside of motherhood and stuff. I'm part of my community now. I'm doing things that are filling up my time, filling my up my soul. I'm feeling happy. I rediscover the lump, and my friends are like, “Hey, you need to go to the doctor and check it out.”

And I knew it was serious because they said, can you please come in tomorrow to the cancer Institute for a mammogram? I was going on board a train to get to my child's parent-teacher conference when I got the call that said, I'm so sorry. It is. And, but it really wasn't a surprise because I already knew for two days. I felt like I already knew for two days from the biopsy. The biopsy was very painful. The look on the faces of the radiologists and the people in the room and stuff kind of was an indicator like there's something bad going on. But my mind, I was in mania already, this is springtime when I was diagnosed, it's April. I know my cycles of my bipolar very well. This is not my depression season. This is my up my very high energy, high mood.

So I had a very like, well, something else on my list to take on, something else for me to conquer and deal with, and I'm just going to push through, and I'll figure this out – but also freak out quietly inside my mind. But I'm going to pull this together, and I'm going to do this, and I'm going to handle it. I think it was way beneficial that I was diagnosed during a mania phase of my bipolar disorder as opposed to a depressive episode. If I had been diagnosed in the wintertime this time of year, I probably would've been more down about and more sad, more angry. And don't get me wrong, all those feelings did come, they came when that season came. But by that point I had already done the first months of my treatment. So I do feel that being in a sort of having high mania mood helped me be able to push through and be like, okay, let's make a plan.

Let's do this because I'm busy. I don't have time for this. That was my attitude. I don't have time for breast cancer. Don't you see all these things I'm going through? I don't have time for this. I already had a lot of struggles with living with mental illness and with my family. And there were family members of mine that were much more patient than others in trying to understand that I'm struggling with a mental illness. And I always felt different from my family. And that might have been cause I was adopted. It seemed like when I got diagnosed with breast cancer, like that was like easier for them to deal with me than if it was just a mental illness. And that was really disappointing. Honestly, a lot of people with mental illness, we struggle with this invisible illness, and I felt like I wasn't being taken serious that I was just being a drama queen in my family.

But, as soon as I had a breast cancer diagnosis, well it's okay, let's go help Deb. You know? And I'm like, hey, what about the help that I needed all these years when I was struggling with my mental health and I needed more compassion, I needed more support. But now everybody wants the support because there's an illness they can see with their eyes. Oh, they can see the, the hair falling off and stuff. So I actually got a little bit resentful but really didn't say anything out loud. I had to call my brother who lives in New Mexico, and he sent his wife, my sister-in-law to come and help me for two months with my four year old. And that was truly a gift. And I'd always been the caregiver. So now I needed caregiving and it was rough. And so I realized I still wanted a care for myself, but really, maybe I just need help with my child.

How about that? Please help me with my child. My sister-in-law came out, and she helped me. I had a lot of nights in my apartment where I just had little crying fits, and I allowed myself to just feel all the feelings, and remind myself that it's okay to ask for help. People were offering – people that aren't related to me and helping to raise money for me, organizing a meal train to send meals over so my sister-in-law could eat. You know? And I was so humbled, to see, because I spent a life very lonely and without a lot of close friendships and feeling alone a lot. When you're mentally ill, you feel alone a lot. So this was the first time in my life that I felt seen and that people were helping me. It was hard, but it was beautiful. It was a gift. These people in the Salt Lake community gave me the motivation to continue showing up. I'm now bald, and I have a scarf on my head. I'm going to continue showing up. And I wanted to keep doing the things that filled my heart up. Of course, when the tides shift, and my moods changed, and the fall comes with the first new scans, it was then that I started to process the weight of what metastatic breast cancer is.

And I started noticing in September, towards the end of those treatments that I was feeling depressed. I said, oh, it's that time of year. I've been ill with this illness for so long that I know my time of year of when my moods start to change, and I start to become very depressed. And I've spent years of my life struggling to want to stay alive, and now I have to because I have cancer. Maybe during mania I didn't realize what metastatic meant, I've been over this and over this in my mind. I revisited it, and I think I didn't understand what it meant to have stage IV cancer until I entered my depression season and started investigating this illness more and looking things up. And when I had asked for support at the hospital, I was told that because I was doing so good, those support groups weren't for me.

So I didn't get any support. So I felt alone in the sense of I didn't have any information. How could I have done all this treatment and not understand that I will now be on treatment for the rest of my life indefinitely? And I was depressed, very depressed, when I received that news. And so while we were all overjoyed at my first scans that the Taxol had worked, the first line of treatment was working, the tumors were shrinking, and the oncologist says, “Okay, we'll see you in three weeks.” I had this realization of, well, what do you mean I'm not going to ring the bell? Like I'm not. And I realized, oh my gosh, I didn't really understand what it meant to be metastatic. And so it was hard, I had faced all these rough months, very gung-ho, high energy, the community, the love, the people, the busyness. But now it's fall and winter, it's fall and winter for my mind, too. And it was very difficult. I had to, I had to return to therapy, get my medication adjusted, and just kind of deal with it. And it was sort of a darker Deb.

Now I was really, really feeling what metastatic breast cancer was, and I was angry and sad, and I felt alone. So you can have a whole community, you can have people loving you, you can have loved ones, but if you don't know someone else that's going through what you're going through, it's very lonely. And it would still take me three years to find someone else with metastatic breast cancer and to find more information and put myself in that thing because I turned inward. I isolated. I didn't want anything to do with it. I didn't want to know about the breast cancer community. I did. I didn't want to do it because I was scared of making friends and losing friends.

So I have made it a point to make sure that all of my providers are connected. I am very diligent about my medication that I take for my mental illness because if not, I become very sick. And that was not something that I learned overnight. It took many years to get into the habit of setting alarms and having the little medication box and making sure I have the morning and the evening and filling it up once a week, and then calling the doctor, and every doctor's appointment, everybody's reviewing, “Are you still on these medications?” Oh yes. Sometimes it is a lot. Oops, I forgot I adjusted or readjusted this dose, and making sure that nothing is contradicting itself.

And now I'm a year in and it's kind of the same thing. Now I'm starting to get more acclimated to this idea of infinite treatment. I've been having scans, they're going well, I'm blessed that my first line of treatment is still working. I live somewhere else now, and I have a whole new life now, different from when I was first diagnosed, but I still have the same struggles. I still have the same mental health struggles. I still have the days of where I'm like, I don't know if this is pain from chemotherapy or if this is a mental health struggle or all of the above. So I was still doing community work and then I moved because I fell in love with my friend a year later, we're getting married. So I left my community in Salt Lake. It was a psychological and emotional shift that I had to go through. I was no longer single independent mom in the city. I was now mom, bonus mom, stepmom, whatever you want to call me here in a more rural area, still dealing with cancer and mental illness. But now on a smaller scale, I, I feel settled here. Our new life. My new partner, my new family, my new cancer center, just down the street,

I started feeling something like literally I was having struggles walking, and I was having neuropathy and things. And I remember looking at him and saying, “Maybe it's time. I think it's time for me to start finding some answers from other people.” So I go on Facebook and I Google at breast cancer groups and I Google groups for women of color. And I start finding some things, and I joined a few groups, and I'm like a fly on the wall and just kind of reading posts and, and looking and then going, aha. And it's okay if I find people and I care about them, maybe it just took me a while. There's so many beautiful people in the community, and not just with metastatic breast cancers, but survivors, that have their stories. I love hearing this. I'm rooting for the survivors. I'm rooting for the early stages. I'm clapping every time someone gets to ring the bell. And so I have to reconcile in my mind that I can have more than one community, that I can have another place to belong, that I can have another place to find support and make friends, and support other women that are going through this, other people that are going through these experiences and that I feel ready to talk about it.

This last year has been really eye-opening. And I decided to shift all my activism into doing breast cancer advocacy now and talking about it and connecting with people while I still have the time. I go back and forth with, I wish I would've met these people sooner, or I wish I could have found out about LBBC four years ago. But I know now, and now I want to give these resources to others, and now I want to spread the word, and now I feel like I'm in a safe place. I've been dealing with this. I feel I'm not a rookie. I'm coming up on my five years, so I feel like I have some things I could say about this now.

Jean:
Hi, it's Jean Sachs, the CEO of Living Beyond Breast Cancer. And this was such an incredible story. I didn't want to end the episode until I had a chance to talk to Deb directly and just share some of the takeaways I had. So Deb, are you with me?

Deb:
Yes, absolutely. I'm so glad to have been here and to have been able to share my story.

Jean:
Well, first I want to say thank you for being so authentic and so honest. I know that is not easy to do. So we're really grateful for your willingness to be so open. There were so many things as I was listening to your story that I thought about, but I just thought maybe we could have a conversation about just a few of them. And one is that it seems like you've been a patient for many, many years, not necessarily for breast cancer, but in managing your mental health concerns. So it sounds like that both helped you but also made it challenging.

Deb:
Yes. You nailed it. Is it has been both helpful and challenging to have been navigating a mental illness for so many years before a stage IV diagnosis.

Jean:
But it also, you were more familiar with the healthcare environment, right? And kind of all the things you have to do to take care of yourself.

Deb:
Yes and no. I think that in some ways I was so used to navigating the healthcare system as a caregiver for my mom and then for myself in the mental health realm. But it also kind of felt like there was times in my life where I focused so much on my mental health that's kind of why I disregarded my physical health. Because I became almost obsessive with maintaining my mental health and keeping my therapy appointments, and then that kind of hindered me from being on top of the physical illness and the physical stuff.

Jean:
Right? I mean, it is all physical in the end, right? But yes.

Deb:
Exactly.

Jean:
Well, I just thought it was really impressive the way you took some of the skills you had learned about managing your medication and knowing the seasons of the calendar that are easier for you and, how you kind of use that you're still using it to –

Deb:
Yes.

Jean:
To move forward. The other thing I was really struck by, and I think about this a lot, is that you didn't reach out for support right away. And we see that a lot at Living Beyond Breast Cancer. We always think, “Come to us right away!” But what made you ready to start reaching out and connecting with particularly the metastatic breast cancer community?

Deb:
So during the pandemic, I moved from the area that I was living in. And when I started finding myself without the physical support of my friends and my community that I had in Salt Lake, I started feeling more alone. And then I started becoming more mindful of these side effects that I was going through. And I thought to myself, I don't have anybody to ask. Like, I can't be the only person going through this. My oncologist keeps saying, no, it's not the medication. But I was a perfectly, fairly healthy person before I was diagnosed. So that kind of led me in the direction. It was like literally the pain in my body was like, okay, well now it's time to find some people and ask some questions. And it sort of led me into finding LBBC and stuff and finding groups on Facebook for support. But if I could say what was the one thing that led me was feeling finally having a question that needed to be answered by someone that had an answer for me.

Jean:
Right. And so once you started connecting, what did that do for you?

Deb:
Oh, first it opened my eyes to realizing, hey, this is something I needed that I didn't know that I needed. Like, suddenly it was like a light bulb moment, like, aha, oh man, I should have done this a long time ago. Oh, I'm not the only one going through this. And also kind of made me a little upset with myself for waiting so long because I started thinking I didn't really have to deal with all these questions. I could have just had these answers a long time ago if I would've just sought out some help or found out about these things. And so there was anger. Nobody told me about LBBC; I had to find this on my own. Then, on the other hand, maybe I wasn't proactive enough. And then finally after I go through those mixed feelings, I sort of settle in, and look, here I am now, and I'm using these resources now, and now I'm helping others.

Jean:
Right. And it's just really good for us to hear that, and for all our listeners to know that sometimes you want to reach out, but you're not ready. But when you are ready, there is an amazing community, and it's not just Living Beyond Breast Cancer, but we certainly are a place we'd love you to come to. But there really are a lot of incredible ways to connect with people who really understand what you're going through.

Deb:
It's been a journey. I would say that I found out about Living Beyond Breast Cancer about a year ago. And that's kind of how it started. I attended the conference online last year and then from there I started going to the website and reading more and then joining groups and people talking about it. And I was like, there's something very comfortable about meeting other people that really get it, and they're where you're at. And even if it's not the same stage, it's just kind of being like, oh, I can help this person now, I remember what that was like. Or someone else living with stage IV and, and seeing that they're doing okay. It's a real sense of community.

Jean:
Right. Well, that's great, and we're so happy to have you in our community. So I just really once again, want to thank you for sharing your story. Is there anything you want to add or that maybe you missed or you want to emphasize before we end?

Deb:
I would love to emphasize that I know that I'm not the only one living with breast cancer and mental illness. And I'm hoping that in sharing my experience, in sharing my story, that there might be others that might want to come forward that are seeking support, and to not be afraid to ask for extra help because it is challenging managing multiple illnesses at once. And I want to put myself out there as a resource and say, “Hey, you're not alone. Like you got this, it's okay to ask for help and extra help at that.”

Jean:
Yeah. That's so important. And particularly in our culture where mental health is often not understood. And you talk about this just how your family had an easier time supporting your breast cancer diagnosis –

Deb:
Exactly.

Jean:
Than they did your mental health diagnosis. So I think for all of those people listening, hear what Deb is saying, you're not alone, and there is support and we want to be here for you. Well, thank you so much and look forward to continuing to connect with you in lots of different ways.

Deb:
Thank you so much. Thank you, Jean. And thank you, Living Beyond Breast Cancer for this opportunity. It's been wonderful being able to share this. Thank you so much.

Jean:
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. If you need support and want to talk, LBBC's helpline volunteers are ready to listen. Visit lbbc.org to get connected. Many thanks to our sponsor, the Centers for Disease Control and Prevention.