[00:00:00] Adam Walker: Komen has funded research for more than 40 years to find the cures for metastatic breast cancer, also known as stage four, but the five year relative survival rate for those living with MBC remains only 29%. That means seven out of every 10 people with MBC are expected to live less than five years.
This year alone in the us, nearly 44,000 lives will be lost to MBC. This week is MBC week, and we are publishing a new episode every day to shed light on the people who are impacted the most. When a life is lost to MBC, the husbands, daughters, sisters, and friends who are left behind each of our guests this week is driven by the purpose to help find the cures for. And to be a positive force for hope.
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.
Although metastatic breast cancer cannot be cured today, it can be treated. Treatment focuses on extending life and maintaining quality of life, both of which were incredibly important to Sylvia Proctor as she was living with metastatic breast cancer. Unfortunately, Sylvia passed away from MBC just before Mother’s Day last year. Her daughter, Carlita McIlwain, remembers her mother as an entrepreneur at heart who successfully ran more than 10 businesses during her lifetime while also working full-time. Her life was defined by her devotion to her Catholic faith and her Native American/African American family. Carlita is here today to share her mother’s story, which has fueled her passion to give back and help find the cures for breast cancer. It is her hope that her work will help future generations – both in her family and in her cultures.
Carlita. I’m excited to hear about your mom. She sounds like an amazing woman. And welcome to the.
[00:02:06] Carlita McIlwain: Thank you. Thank you for having me, Adam. I appreciate that.
[00:02:08] Adam Walker: Well, this is going to be a great conversation, You know, we’re here today to honor your mother. So let’s start with the story of her diagnosis and then the timeline from getting diagnosed with MBC and, and knowing that she had cancer and, and, and that it had come back. Walk us through that whole process.
[00:02:24] Carlita McIlwain: So in, two thou, late 2011, my mother had, been on some other therapies from having a hysterectomy at a very young age. She had been on estrogen patch for 20 plus years. And, they finally, doctors who knew, doctors that she was seeing in, South Carolina informed her like, you know, we’ve now had some studies about breast, about causes of breast cancer coming from, hormone replacement therapy.
So they took her off the patch. About, three months later she developed a lump in her breast. Happened to roll over in the bed one day and, felt this lump. And this was just about three months after she had had her, routine breast exam. So contacted her doctors that, you know, this feels weird.
My mother was prone to Sial cyst. So initially her thought was that it was a cyst and she would just have to go in and have it cut out. Similar to some others that she had had over the years.
[00:03:38] Adam Walker: Gotcha. Okay. And, and then tell us about the diagnosis. She found out obviously that it wasn’t assist, so kinda walk us through that as well.
[00:03:47] Carlita McIlwain: Yeah, so when she went in to, see her primary care physician, they said, they did a ultrasound and they determined that it was not assist and that they needed to have it, a biopsy. They did a biopsy and came back, to inform her that she had stage two, her two positive, breast cancer. And, immediately within about a few weeks, she, started on chemotherapy and radiation therapy For the next four years she was on Tamoxifen and some other drugs that were pretty horrific side effects.
[00:04:27] Adam Walker: Mm. And so she was in that treatment for four years, kind of what happened?
[00:04:32] Carlita McIlwain: They had removed the, the actual lump and so, it was very small and so they had removed it, but they were doing the therapy, so they were continuing to test her and, determined that she had no more cancer just before her five year anniversary.
So, we kind of felt like she was in the clear and everything was going to be fine. She went back six months later and was found to have, it had to change to her two negative Triple X. And from that point, kind of just continued to go downhill a little bit. She was on some additional chemo, different chemo therapies.
She was also on radiation therapy and. The, I mean, she was feeling actually pretty good the second, the second round. She wasn’t as sick, wasn’t having as many difficult difficulties as she had with the side effects, and she was like, You know, this is great. She started to develop a, what we ended up finding was a side effect of.
Having this particular type of breast cancer, she developed, syncope. And syncope is when you just randomly just pass out. And, she passed out the first time. She didn’t think much of it. My dad was like, Oh, you must not be drinking enough water. Let’s just, you know, you know, increase your water. And, the doctors also were saying the same thing, continued.
So she went through this, I mean, gosh, six or seven different episodes of this before they finally said, No, this is, this is not what that is. So, they put, even put in heart monitor in, in her chest to just to record it and to see what was going on because they really couldn’t find a correlation to, She would only do this at certain times, usually when she was in a shower.
So she would. Having hot water on her, things like that, which was not, which was, you know, atypical for someone under breast cancer, therapy through radiation or chemo. So as she continued, she was going back for PET scans and so forth and. Then one day she was, shaving her on under arm and she felt something that she described as a, felt like a, a, a ribbon was under her skin.
And she, went back to the doctors and she, they said, first they said, You know, we don’t think that that’s anything that just seems like it’s just some bit of fatty tissue. But we’ll, you know, we’ll keep an eye. Shortly after that, she started to develop breathing issues, breathing issues in that seemed to correlate with the syncope.
So like she would get like a short shortness of breath, and then she would just. Collapsed. My mother always, her whole life had circulation issues in her hands and her feet, even though she didn’t have any underlying, medical condition that would cause that. But her toes were turned blue sometimes or that kind of thing, but now her fingers were turning blue.
So, Center to a ps and then the PS said you have, a narrowing of your arteries. So we need to go in and open up the arteries. That’s why you’re, that we think that’s why you’re passing out. We think that’s also why you’re having a shortness of breath. Went to, went to Charleston, South Carolina for the procedure.
Ah, came out of the procedure and they said we couldn’t open it up. It was just too collapsed, too much that we couldn’t open it up, and that this was something she would have to live with. So we said, Okay. Went home within. A few hours, they, informed us that they had also run her blood work. They had also run the test on the actual ribbon under her skin, and that she, it had become metastatic.
Breast cancer. It had now been, has the size to the lining on the outside of her lung, which was causing the shortness of breath. And then she was also had some in her pelvic bone at that point. Hmm. So at that point where, you know, they told her she had six months to live, so that came as quite a shock to our family.
She had called us all down. She told us this is. This is what your life is at this point, and that we don’t have any more, medications to give you, no other chemo to give you, no immunotherapy to give you. We don’t have anything. And, you need to prepare for your end of life.
[00:09:39] Adam Walker: Wow. Yeah. That’s so tough. And, and how, how long did she live with metastatic breast cancer? If you don’t mind me asking.
[00:09:46] Carlita McIlwain: From the time that they gave, they told us that she had six months to live. She had, she lived almost just under two years.
[00:09:54] Adam Walker: Wow. Well that’s pretty profound right there. Yeah. So, so that’s your, your mom’s cancer story, but I know she was so much more than that, even just by the introduction that I read. So let’s, tell me more about your mom. I mean, give us a sense of her personality. How did she approach life and, and culture that you grew up?
[00:10:13] Carlita McIlwain: My mother was a very positive person, like I said, and you captured, it very clearly. She was an entrepreneur. My mother has run every business you could probably think of from Tupperware to her last, business owning her own cruise and travel business.
She’s sold Copper Craft and Home Interiors. There’s, she’s had, she’s made doll a porcelain doll. She owned a floral shop. She’s, she’s had a, a lifelong love of being a woman who is empowered and taking her financial, her financial stability very, seriously. And she, she gave back to other women in that way talking to people in her church.
Talking to people, women in the community center and even in the neighborhood where she is, she always was encouraging young, young women, children as well as the older to continue to, be independent, self-sufficient, things like that. She’s of course, instilled that a great deal in myself and my siblings and making sure that.
We always understood that, you know, we are responsible for our lives and what, what legacies we live for. Her grandchildren, as she would say,, she, she always makes sure that, remind us that we are in charge of the most precious things to her, which we thought we were, but she. The grandchildren somehow know they’re superseded us
So she, my mother loved to travel my traveling to 56 countries, tributaries islands. She’s a very adventurous person, fearless, courageous. I remember she said, Well, I got some things on my bucket list. And I said, Okay, what is that? She was, Well, I’m going to go bungee jump and I’m going, What? You’re bungee jumping at 50 some years old.
Are you kidding me? And so she went bungee jumping. My mother couldn’t swim, but she went parasailing over the ocean. Knowing they were going to drop her at some point down into the water. I, you know, she is just, was a, a phenomenal person. Even going through her cancer journey, her positivity that she always tried to make everyone else.
Feel good about what she was going through when everyone else’s hearts were breaking. She, she would remind them that I’ve lived a very full life and, and, every minute I’m here, I don’t take for granted. You should live your life that way. So I definitely think that sh her spirit continues to live on through her children, in her culture.
We are part of the Piscataway Canoe Tribe in Maryland and. I remember I’m on the council. I was on the council, and she, You know, wanted me to make sure that people always knew that our heritage was more than what had been prescripted for us for many years. Continuing to claim what she was, who she was, where she came from, was extremely important.
Passing that on to her grandchildren and letting them know that as well, to never let someone else define who you are. You set the standard for who you are and what you want to be in this world.
[00:13:51] Adam Walker: Wow. I mean, just the, your description of how she cared for her grandchildren and cared for her culture, I mean, makes, makes her sound like she was just so forward thinking a about future generations. That’s just truly amazing.
[00:14:02] Carlita McIlwain: Definitely. And my mother had the privilege of going to private Catholic schools. She went to college for, a period of time, worked in the federal government for years, retired very early at the age of 50. All the times still running those businesses also because, you know, we had to have Avon.
I mean, we, we had every kind of Avon product you think of in our home all the time. But, she, yeah, she just definitely had in, in all of us, each of us have our own businesses as well, because we follow in that footstep. So we’re continuing to honor her legacy that way. We’re con, we’re constantly doing that with the fact.
We all travel to different places, learn different cultures. Her grandchildren especially, you know, they’re the millennial babies, so, they travel a lot and, are determined to travel to more, twice as many countries as she has. So I know that she would be extremely, extremely proud of them. Wow.
[00:15:09] Adam Walker: I mean, that’s a fantastic goal. I love that goal for traveling. That’s, that’s amazing.
[00:15:13] Carlita McIlwain: Yeah, I don’t want to, I definitely, definitely do not want to forget about my dad. My mom and dad were high school sweethearts, you know, married for 56 years. She passed away at the age of 75, and he never left her side. He’s, he’s her rock, he’s our rock, kind of.
We tease him sometimes, that, you know, he’s got big shoes to fill with her. Yeah. But, he, was a caretaker. You know, there was nothing he wouldn’t do. He was at every appointment. He, he was there through everything. And my siblings, I have a brother and a sister, and they both. They both with me and my dad every day.
We each took a turn being the person to go down and take care of her, whether it was in South Carolina or when they decided when she got the six months diagnosis to move back to Maryland to her, her home, so she could be near her siblings and children and grandchildren. So, Wow. And even like, like you said, forward thinking because she was always making sure.
Everything was set for us. So before she passed, when she came up here to Maryland, I said, Mom, let’s go to get a second opinion. And first she was like, Well why, why would I do that? They said, I’m not going to ask for six months. That’s just a waste of money and time. And I said, Not necessarily. Let’s see what they’ve got.
Right. So we went to another, another hospital system and. We’re able to get her into some investigational drugs and, and additional chemotherapies, and that’s what allowed her to live almost two years. Just shy up two years from the original diagnosis of metastatic breast cancer. But in inclusive of all of that, like every time she would go to these appointments, she was always.
Educating the people there about what brights patients have and, and how you should never count someone out, until, you know, she always says the good Lord takes you back, takes you, takes you away.
[00:17:28] Adam Walker: She sounds amazing. It sounds like you had a tremendous amount of support, you know, from your, from your family for her through that process.
I wonder if you could talk just a little bit. And you kind of mentioned it earlier, but she was so positive, so full of life. How did she handle receiving the news that her cancer had metastasized and that she only had a short time?
[00:17:47] Carlita McIlwain: She was in shock. She was in shock because she has great faith and she just knew that God was going to see her through this, which I believe God’s did because, you know, it’s just her.
You know, God’s timing is not always our timing. She. Was shocked because she was feeling better than she was the first go around with when she was going through some of the chemos that just were just really, really harsh on her, where she couldn’t eat. And she was so sad about children that she would help children in third world countries who were starving.
And she said, This is how they feel. And she didn. You know, she didn’t like that. So she, sh I think the hardest part for her, beyond the side effects was just having to tell her children and, and grandchildren and my dad that she wasn’t going to be here. Mm. Yeah, that she would have to prepare us all. So she did.
So you know how she prepared us out of, she went and bought my dad. She and my dad went and bought a house. She said, Well now he’s not going to live with your sister the whole, for the rest of his life because his rest of his life might, I’m hoping is going to be a lot longer than mine. And so, you know, he’s gotta have his own house.
So here she was dragging herself, barely weak enough to do anything to find the perfect house. She went to look at every single house, pick the house out, decorated the, and told us all. We don’t have much time, so I need to get my house decorated. So her house had to be decorated every holiday. She always celebrated holidays, but these holidays were more special because she just always says, This might be my last Christmas, This might be my last mother’s day.
So every single thing was done. Sylvia’s. And that and, and, and, and we didn’t question it. It was, this is what, whatever she needed, that’s what we were going to do.
[00:19:55] Adam Walker: I love that. I love, and, and I have a hunch based on what you just said, what your answer to this next question might be, but I’m going to ask anyway. What was most important to your mother as she was going through this experience?
[00:20:10] Carlita McIlwain: I find a cure, even though I’m not a doctor. She, she just would say, Why can’t you cure me? She knew that I had, been working for several years in, clinical trials, mostly with lung, lung cancers, but, In her mind like it was, you know, you could, you know, somebody who knows somebody who can fix this for me.
And I would say, Mom, we just don’t have any cure. I if, if I could find one, I would find it and make sure you got it, but I can’t. So she said, Well then, You need to make sure it does that it doesn’t affect my grandchildren. Make sure that they don’t have to go through what I’m going through. So that’s why I’m here at Komen, working at Komen because I believe she just went up there to Heaven ca and said, Okay, I’m going to make sure Carly’s career gets driven in this direction.
Yeah. And. I’m here at Komen trying to just do that, trying to help those who are finding the drugs, finding the therapies to, eradicate this situation and, make sure that my children, my brother’s children, her grandchildren, great-grandchildren, do not have to suffer the way she.
[00:21:33] Adam Walker: That’s fantastic. I mean, again, I mean she sounds like she was always forward thinking, future generations make sure they don’t have to deal with this. And that’s such an amazing perspective on life. And so it strikes me as so caring in that moment.
[00:21:47] Carlita McIlwain: You know, she was definitely service oriented person. I love that consistently serving other people, like I said, through her church, giving back to homeless, helping young girls to continue to be the best versions of themselves even while she, she was going through cancer.
She had, she had friends and. People in the church who were also going through cancer, and she would always call them and encourage them and let them know that she was there and that they had someone to talk to. So about what she was going through. And she, you know, I think that a phenomenal thing that she did is the, even though she was working, she would tell all of her clients, Yeah, I’m going through this, but you know, I’m not gone yet, so I’m going to continue to. to serve you and be there for you. So yeah, she’s definitely a service oriented person.
[00:22:41] Adam Walker: That’s fantastic. So what are some ways that you and your family honor her memory now?
[00:22:48] Carlita McIlwain: So, as I said a little earlier, I would say the biggest thing that we do is we continue to be that adventurous spirit, continuing to travel, trying to learn new cultures, new new places.
And we also do the more than Pink Walk. Every year usually. Actually we’ll be doing it again on October 1st. Going to be walking across the Woodrow Wilson Bridge here, just outside of Washington DC in her honor, as we did last year, went right after she passed. We also continued to run our businesses. As I said, we continue to serve other people the way she did, and the most important thing that our job is, is to make sure we take care of my dad.
[00:23:35] Adam Walker: That’s right. That’s right, that’s right. Family. Family first. Right. Family first. That honors certainly honors her legacy. Yes. And is very in line with how she was thinking. So then, last question. Do you have any advice for our listeners on how to best support a parent or a loved one that’s living with metastatic breast cancer?
[00:23:54] Carlita McIlwain: Yes, I believe, and I know that my siblings would agree with this, the most important thing is to remember that your parents bring you into this world. It’s your job to help them lead this world in the most compassionate and loving way possible. So being there for them like nothing. Nothing that they need, you should not try to get for them.
You should advocate for them. I remember my mom was, had developed metastasis, to the brain and she had some lesions on her brain and she needed to have radiation. Therapy to the brain and the, we are in the, in the room. And the radiologist said, Oh, he came in, he saw her, and she, she looked very frail.
And so he said, Oh, no, she can’t, she can’t, she shouldn’t go through this. Y you shouldn’t do this to her. You’re doing this for you. And I pulled him out of the room, my sister and I, and we told him, No, you, you don’t make decisions for her. She makes decisions for her. We came back in and my mom had gotten, you know, kind of gotten herself together a bit and she said, she said to him, she said, Until the day I’m six feet under, I make all the decisions for me.
You give me everything. So I always tell people that what they need to do is seek out additional, opportunities to find help. If there’s a clinical trial, go for it. There’s no, there’s no harm in it. Even if someone gives you a prediction of six months to live, doesn’t mean that you have to accept that you have to just go ahead and do everything possible, because as my mom said, every day, every hour, every minute you get to spend with your family is worth the struggle.
[00:25:56] Adam Walker: That’s such a fantastic, fantastic perspective and just gives us a glimpse into how wonderful your mother must have been. And, I’m just so thankful that you shared her story with us today. Thank you for joining me on the show.
[00:26:10] Carlita McIlwain: I just hope that my, her story told through me helped someone else.
[00:26:17] Adam Walker: It will, it will.
[00:26:19] Carlita McIlwain: Thank you for that.
[00:26:23] Adam Walker: All funds donated to Komen this week will be dedicated to funding the cutting-edge research to one day end MBC. People living with MBC are desperately waiting for new treatments to extend and improve their quality of life. Visit Komen.org/supportMBC to donate.
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.