Living with a history of triple-negative breast cancer

November 15, 2021

Watch time: 22 min 
 
Melissa Berry and Valerie Blackwell-Howard, two women diagnosed with triple-negative breast cancer, discuss their diagnosis, life after treatment, and how they have each moved forward while living with a history of TNBC. 

Presenters

Melissa Berry is the founder of Cancer Fashionista and someone who has been treated for triple-negative breast cancer. Melissa struggled to look and feel her best during such a difficult chapter of her life, which included chemotherapy and surgery. She began scouring the internet for beauty tips and tricks to help manage the appearance-related side effects of her experience, as well as for niche products that would help with her recovery from treatment. Melissa kept track of the best advice and items that she found and started the Cancer Fashionista blog to share her recommendations with other women facing similar diagnoses. Read more

Valerie Blackwell-Howard was diagnosed with stage II, triple-negative breast cancer in late 2017. After finishing treatment, Valerie’s sister urged her to attend an even she found online, the 2018 Living Beyond Breast Cancer Conference: Sharing Wisdom, Sharing Strength, which was supported by the Triple Negative Breast Cancer Foundation. Inspired by the connections she made with other women at the conference and the stories they shared, Valerie got involved as a patient advocate and in 2019 received the Courage Award from the Triple Negative Breast Cancer Foundation. Read more

 

Transcript

Melissa Berry (00:23):

Hi, my name is Melissa Berry, and I was diagnosed with stage I, triple-negative breast cancer in 2013.

Valerie Blackwell-Howard (00:30):

Hi, I’m Valerie Blackwell and I was diagnosed with triple-negative breast cancer in 2018.

Melissa Berry (00:38):

Valerie, it is so great to see you.

Valerie Blackwell-Howard

You too, Melissa.

Melissa Berry

I just love these conversations and I’m so glad that we’re able to be here today to share our experience with triple-negative breast cancer. We both know how scary triple-negative breast cancer can be. How did you cope with it when you first found out, like that initial diagnosis?

Valerie Blackwell-Howard (00:57):

My initial diagnosis was very rough for me, and it was so funny because I was in a house by myself when I was first diagnosed. And I didn’t know when a doctor called me to cry, to yell, to scream. What I really did, I just got down on my knees and prayed. I heard a voice say: “You’re going to be OK. You’re going to go through what you have to go through, but you’re going to be OK.” And it was scary. I was fearful. I was afraid, because you don’t know the unknown.

Melissa Berry (01:29):

Exactly. You just don’t know. And, for me, there’s so much breast cancer in my family, and I have the BRCA gene, and I was very closely monitored. It was just a very routine mammogram appointment that I was going for. And when they told me that it was breast cancer, I felt like it was an out-of-body experience. I don’t know how to explain it. Like you said, you’re angry. You’re scared. It was for me, mostly I think, disbelief. I thought to myself, “It can’t be that breast cancer. It just can’t be.”

Valerie Blackwell-Howard (02:01):

But isn’t it so funny also that when we hear that diagnosis, that we worry about ourselves, but we worry about our family, also. We worry about our children. We worry about our spouse. So, all those things went through my mind: Who is going to help take care of my kids? Who’s going to help take care of my grands. Who’s going to help with my husband? And I pulled myself to the background because I didn’t want to believe that I had triple-negative.

Melissa Berry (02:27):

You nailed it. I mean, I think it makes us look at our mortality, you know? And you do: you think about yourself and your own life, but then your family and who’s going to care for them. The whole experience is very scary. So, would you say, as far as recurrence — so we definitely talked about just now like the initial diagnosis — but what is your feeling on fear of recurrence? Do you think about it? Did you think about it when you were first diagnosed? Do you think about it now?

Valerie Blackwell-Howard (02:58):

I never really thought about it, but we have to know as triple-negative breast cancer patients, that we have to normalize fear because it’s part of life. But if we normalize it, we know that we care about our life.  I had to say that fair can’t live in my house. Faith and fear can’t live in the same house. So, I have to choose one. And I had to find resources and people to help me cope with that fear that I was having.

Melissa Berry:

The whole recurrence topic is heavy. And I think we all deal with it in a different way.

Valerie Blackwell-Howard (03:38):

I don’t ever think that we get over this fear because we never know what’s life going to bring to us, but we just have to make sure that we’re having the right diet, that we’re exercising, that we’re taking a 15- or 30-minute walk a day, have a dance party in your house for 15 minutes a day. All of those little things, and try to live life. We didn’t choose to have this breast cancer, but we can choose how we live our life. So, we have to just be happy.

Melissa Berry (04:09):

Exactly. As far as fear, is there anything that triggers it — that’s a trigger for you that takes you back maybe to that first moment when you were diagnosed, when you were just completely freaked out?

Valerie Blackwell-Howard (04:23):

Social media. I try to stay up. I try to encourage my sisters that have, triple-negative breast cancer through social media outlets, but there are times where I have to back up and walk away when the conversation gets too deep, I try not to get involved with those conversations because I try to take any negativity out of my life. I’ worry about recurrence, and I don’t want to speak those things into my life. So, I just take a back seat. I move myself away, and then I come back in.

Melissa Berry (04:57):

Right. Thank you for sharing that. I would think for me, my trigger is when I go for my appointments, when I’m in the doctor’s office. It’s the smell of the office. Maybe it’s even the rubbing alcohol when they do the blood tests, it just takes me back to that place. And I feel like that’s really the only time I ever really think about it, because I really try not to, but we all have our triggers and you know, we’re all so different. And that for me, that’s, a big one, and I try and talk myself out of it when I’m going for a follow-up. But I get sad. I get scared. I get anxious.

Valerie Blackwell-Howard (05:34):

Doctor’s appointments make me feel secure. As long as I know ’I can see my doctor every three months. He recently was telling me, “You’ve got to start coming every four months.” I said, “Why four months? I still want to continue with the three months.” It’s like, my security blanket. It took me like two years to have my port taken out, because my port was my security blanket. I didn’t know if this triple-negative was going to come back, and why take it out if it’s going to come back? So, leave my port in. I didn’t want my port out because at that time I was fearful that it may happen again.

Melissa Berry (06:12):

And I’m happy to say that I just learned today that you turned your port into a beautiful necklace because it is a part of your experience and it gives you comfort. And we all, I think find comfort in different ways.

Valerie Blackwell-Howard (06:25):

I tell my sisters, just, look for someone that you can speak to. Find someone that is also diagnosed with breast cancer, and let them help you get through this because none of us have to walk alone on this journey. We all fear that recurrence, and some of us keep it in the forefront and some of us put it behind. So, we have to just choose which one we’re going to do.

Melissa Berry (06:48):

Exactly. It’s so true. So, body image; I know this is a big one. How did you perceive your body image after your diagnosis, and what major issues did you have after having a bilateral mastectomy and breast reconstruction?

Valerie Blackwell-Howard (07:08):

Major issues were my hair loss;  I had a double mastectomy, so that was an issue for me; the weight gain, the weight loss  — and I lost a lot of weight, I really looked sick at the time. I had issues with my teeth falling out and different issues with my skin — my skin was so pale. So, there were a lot of issues. And, just think about when I first, when I went into the shower and I was taking a shower and just washing my hair, a whole chunk of hair came out and I started crying. I had my husband sit me down and I had him shave my hair because I didn’t want the chemo to take my hair away from me. I wanted to be in control. So, I was like, “Just shave it.” Because at that point I was like, let’s just shave it because just let me have some type of control over something in my life. Because during that time I didn’t feel like I had any control of anything.

Melissa Berry (08:10):

Absolutely. I have a similar story. It’s crazy. My daughter, Erica, at the time was, was very young, and you know how kids they say, “Oh, I want to be a firefighter.” She wanted to be a hairdresser. And so, I woke up one morning and my hair was itching me so badly. And my hairdresser had said, “When it gets really itchy, just shave it off.” At the time I cut it really short, and I was about to hit it with the razor. It was really early in the morning. I heard a knock at the door, it was my daughter. And I said, “Erica, do you want to shave mommy’s head?” She was like, “Yeah.” So, we went into the bathtub and she shaved my hair. And honestly, it could have been one of the darkest moments, but it actually was quite beautiful because she was part of it. And she kind of made me laugh about it a little bit. You know, what else can you do?

Valerie Blackwell-Howard (09:00):

Yeah, that’s how I feel about when I had my double mastectomy, I would not look in the mirror. It took me about eight months to even look in the mirror. I would always walk past the mirror, every mirror in my house, I would just walk past it really quickly. And then, one day my husband was, saw me coming out of the shower. And when he saw me coming out of the shower, he always noticed that I would walk past the mirror and he took me in front of the mirror and helped me and said, “You know what? Without breasts, without anything, I’m still going to love you. It doesn’t make a difference if you have breasts, if you don’t have breasts.” Because you know, we, as females, our looks and body shapes — body image is everything.

Melissa Berry (09:44):

And even like, try on swimsuits, let alone lose our breasts. Right?

Valerie Blackwell-Howard (09:48):

Exactly. I’m saying we already have weight issues. We worry about our diets. We are so busy taking care of everyone else that sometimes we forget about ourselves. And so, I became more aware of my body image during my treatment because ’I had more time to sit at home and, “Oh, look, I’m gaining weight,” or “I’m not eating,” or “I can’t do this,” or “I can’t do that. I don’t have breasts. I don’t have a bra that I can fit into. So, what do I do now? And even when my husband wanted to hold me — we don’t even talk about sex, because that’s part of body image. What you do, pull the covers over yourself?

Melissa Berry (10:32):

Absolutely. I mean, talk about vulnerable. I mean, I felt like a shell. I’m not going to lie. I felt like a shell of a woman. And that’s why I do what I do today, because I don’t want anyone to ever feel that way. And it’s hard because you lose your hair, you lose your brows, lashes, your breasts, and you don’t feel like a woman anymore. And it’s so hard to see the other side of it. When you’re done with treatment and then your hair grows back and your breasts are reconstructed and the lashes come back, it’s almost impossible to see that there’s another side of this.

Valerie Blackwell-Howard (11:16):

And nobody truly understands what you’re going through because you’re by yourself. I’m saying, even though you may have your mother, I had my sister, I had my husband, I had my daughter, but nobody understood what I was going through and they can tell me, “Oh, you look beautiful.” “Mommy, you’re OK. Mommy, we love you.” But that didn’t help because it was difficult just seeing myself in another light. And like you say, you do feel like just a shell.

Melissa Berry (11:41):

And felt like a shell of myself. I used to say — it’s horrible — like a ghost of myself. And it’s horrible to say those words.I It’s so sad, you know, but I guess when we go through this transformation, if you will, of getting rid of the disease and then losing our breasts, and then putting ourselves back together again, it’s’ a lot, not just physically, but emotionally, to endure.

Valerie Blackwell-Howard (12:08):

I liked the way you said it, “transformation,” because it really is a transformation, but I don’t know if we ever fully put ourselves back together; we take one day at a time, one step at a time, we try to, like you said, advocate for other breasties to make sure that they get what we didn’t get, that we try to do to help them. So, that’s where I find my joy now: just being able to help other people cope with their diagnosis of breast cancer.

Melissa Berry (12:35):

Absolutely. I love speaking to women like you because our perspectives are different, but so many things are the same. Once your treatment ended, how did you relate to your body? Like, how did you see it differently?

Valerie Blackwell-Howard (12:52):

My body image, I wasn’t really worried about. What I was concerned about was my weight, because I actually, I went down to maybe about like 165 pounds. But during that time, I actually looked sick. I didn’t feel like I was a healthy 165. Exactly. So, it really scared me because when I looked in the mirror, my skin was dark, and I could see the dark patches in my skin. And I just didn’t feel normal. I was a runner. I would run five miles a day. And after breast cancer, I couldn’t run like that anymore. And I’m still trying to get back into those activities I used to do. So, it’s really hard.

Melissa Berry (13:38):

Yeah. It’s very hard. I don’t think it’s about finding yourself again. It’s about finding your new you, and I really think that’s the biggest lesson. It’s really hard, and it doesn’t happen overnight. It takes a really long time. I think for me, the initial shock of, of losing my breasts was really, really difficult for me, and my hair loss. And then, I have to say, I was pleasantly surprised about my breast reconstruction. And I don’t know if I’ve ever gone on record to actually say this, but I breastfed both of my daughters, and for a long time, I definitely favored my left breast, so they were not symmetrical. Let’s just leave it there. And I would never want to have, had to go through what I went through. But at the end of the day, I actually am happier with my breasts now.

So, I was able to really accept my new body after my reconstruction and after the healing and all that. But I also experienced weight gain from the drugs, from the chemo. There were some days I didn’t want to eat anything. And some days it was almost like being pregnant. I wanted like macaroni and cheese and bagels and everything, all the carbs. So, it was a very inconsistent diet. I felt like I had to lose weight. But I think, and I’m sure you probably agree, you can’t do everything at once, especially when you’re healing. So, I took it slow. I had the breast reconstruction, I started to do some yoga, and then eventually went back to some weight training and incorporated slowly these things back into my life, got back into work again. But it’s a process.

Valerie Blackwell-Howard  (15:16):

It really is because I used to go to my, when I go see my doctor and I was so concerned with the weight gain and he used to tell me, “Don’t worry about the weight gain.” He said, “You’re doing OK. Your blood work, everything is coming back fine. So, you’re worrying about the weight loss.” But I was like, “I wasn’t this heavy.” But I also lost the weight. So, he said, “You were complaining when you were 165, and you’re complaining now. Take one day at a time. You have to just take one day at a time.” And I’m trying to really live by taking one day at a time. I know my grandson tries to remind me, “Grandma, it’s time for you to get on a bike, do your 15 minutes.” He pushed, “Get on a bike, Grandma, didn’t you say you were going to get on a bike?” And he’ll come in the room and say, “OK, let’s lift some weights.” And I’m like, “OK, we’ve got to lift some weights.” But I’m trying to, like you say, get back into those things, trying to normalize things again. Absolutely.

Melissa Berry (16:16):

That’s such a beautiful perspective. And I really think this, what you’re saying will help so many, I wish I had listened to you when I was in the thick of it. But what would you say really helped you accept the new you and feeling positive about your body? Again?

Valerie Blackwell-Howard  (16:33):

What helped me was that I had, you know, was during my quiet moments, I had to sit and just think about what was important in my life. What really was important in my life. And I, wasn’t just talking about, this, that, you know.  I was spiritual ­ was it my diet, was it my physical, what was important? And I had to figure out those things first. And once I realized what was important to me, I said “I’m going to get rid of all the negativity from my life.” First of all, the stress. I have some good stress things in my life, but I had to get rid of the things that were causing me bad stress. If somebody was bringing negative vibes towards me, I was like, “Let’s get rid of the negative vibes. Only positive energy can live in my life now.”

Melissa Berry (17:27):

You know, me accepting my new me — I don’t know if it was one particular thing, and it definitely happened over a long period of time. But I think looking at my daughters and wanting to be a role model for them, overcoming things and just, doing nice things for myself — you know, we always hear about self-care Sunday and those things, but I think taking good care of yourself also helps to accept your new you and not to look externally for something that’s going to help you to accept that, but to try and accept yourself and love yourself the way that you are. But certainly, our community is amazing. And I think that we share the love. And look, we all have our moments when we don’t feel like ourselves, even eight years out. I will tell you, I never thought I’d be sitting here. I was a fashion and beauty publicist. I didn’t even want anyone to know that I had breast cancer. So, talking about going full circle, now being an advocate. Who knew?

Valerie Blackwell-Howard  (18:24):

We have so much in common because I didn’t want anyone to know that I have breast cancer. Wow. I sat there. And the only people I told was my sisters, my brothers, my children, and my husband. And I told them, don’t tell anyone, because I felt like it was like a spot on me. I didn’t want everybody just feeling sad or discouraging me. So, I wouldn’t allow them to tell anyone. I would not allow them to tell them. Then one morning I woke up and thought, “It’s OK; it’s OK to share my story.” Now I’m comfortable with it. And I’m glad that I was able to get to that point to share my story, because I didn’t want anyone to know.

Melissa Berry (19:09):

It’s hard! I mean, I remember when I was diagnosed, this is how scared I was when I was first diagnosed. I was so relieved to hear that I was going to have chemotherapy during the summer, because I didn’t want to go to drop my daughter off and pick her up at school with a wig on. And I don’t want anyone to ever feel that way. We should be able to go through the treatment and still live our lives and not hide and not be scared. So, I hope again, that’s another good lesson that we’re hopefully sharing here: that it’s not something to be ashamed of, and people want to help — your network wants to help. And, you know, we’re all different, there are’ different feelings that we have about sharing the news with our family members, our coworkers — it’s scary. And it’s a huge transition.

Valerie Blackwell-Howard (19:54):

I tell everybody: just embrace your new self, because it’s really a new you. So, embrace your baldness, embrace your breasts or flat chest, whatever you choose to do, just embrace yourself. Embrace life. Just be happy. Because, as I said earlier, we don’t choose to have breast cancer, but we can choose how we live this life.

Melissa Berry (20:16):

So, what would you say are some words of wisdom that you would share with others that are diagnosed with triple-negative breast cancer?

Valerie Blackwell-Howard (20:24):

To never give up hope. To just know that you can overcome this breast cancer diagnosis, know that with faith, all things are possible and that we have to keep persevering and know that there is strength in numbers, that you have all your sisters and all your brothers that are fighting breast cancer, too. And that you’re never alone. You have so many outlets for people that can help you. Just reach out — reach out to your doctors, reach out to your friends, reach out to your therapist, whoever you need to reach out, even your children. Because I found that my grandson brought so much joy during my time of diagnosis. So just continue to fight.

Melissa Berry (21:06):

That’s amazing. And I couldn’t agree with you more that sometimes, you know, the advice to give to someone is just to simply reach out and to accept help when people offer it. And you can find it in so many different places these days, including in your own home. So, thank you so much for talking to me today. This has been amazing.

Valerie Blackwell-Howard

You’re welcome.