[00:00:00] Adam Walker: 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.
This is Real Talk, a podcast conversation where we’re digging deep into breast
cancer and the realities patients and survivors face every day. We’re talking
openly and honestly about just how difficult breast cancer can be, from being
diagnosed to selecting the right treatment plan, to living day to day with
metastatic breast cancer and life after treatment ends.
In today’s episode, we’re learning how a BRCA2 gene mutation has affected a
family, both directly and indirectly. It’s my pleasure to welcome Nikki, her
mom, Anita, and her sister, Kim, to the conversation. Nikki, you’re a three time
cancer survivor and the only one in your family who has had cancer. You were
diagnosed the first time with uterine cancer at age 31, diagnosed with breast
cancer and underwent genetic testing, and that’s when you learn you had
inherited a BRCA2 gene mutation, increasing your risk of cancer.
So, Nikki, let’s start with you. Tell us about your diagnosis and the
recommendation to get genetic testing and then introduce everybody else on the
call.
[00:01:20] Nikki Anderson: So, my first diagnosis, I just had a very long
period and I was sick. I blacked out and my mom was actually in town and I had
to go to the hospital.
And then we found out I had uterine cancer. And from there, it was just a wait
and see. Because I was only 31, so we didn’t do hormones or anything. And my
OBGYN suggested a gene screen for, I don’t know, Lynch Syndrome, and that’s
how we found out I was BRCA2 positive. And he suggested I have a
mammogram just to start them early and I had one mammogram, and then we
found out I had breast cancer.
So, it’s been a journey from there. My mom and my sister have been there every
single step of the way, and I’m so excited to have them here with me. So, that’s
it.
[00:02:13] Anita Williams: Well, we’re glad to be here, and we’re glad to
support you and everything. The fact that you have been so strong and
courageous and positive through all the things that you’ve gone through over
these last few years, you’ve done an amazing job keeping up your spirits.
Sometimes I think you keep us going as well.
[00:02:35] Nikki Anderson: Thank you. I’m a hot mess. Yeah, I guess we
should talk about like how I told you guys about it. So I found out I had breast
cancer on the sixth year anniversary of having uterine cancer. I started as a pain
in my nipple. I had gone to Mexico and I came back and I just mentioned it to
the doctor as an afterthought.
Oh yeah, I have this pain, and we had already scheduled the mammogram. So I
went to do the mammogram and he called, it was February the 3rd, I think; 2nd
or 3rd. I don’t even think about it anymore. And, he told me I had breast cancer.
I remember thinking, “I can’t have breast cancer because I just went to buy a
new bed.” That was where my head was at. And I was like, “I’ve already done
this once. I don’t want to do it again.” And, probably the hardest thing was
calling my mom and telling her that we have to do this again. And my sister is
an amazing nurse and she is able to separate the medical from the sister part of
it. And she’s like, “it’s fine. We’re going to get through this. We got you and
they do.” So I am incredibly thankful for that.
[00:03:57] Anita Williams: Well, I think too, when you first let us know, first
of all, it was shocking with the first diagnosis, but to think that a few years later,
we’d be going back through this again, was even more shocking than before.
And then to go through it a third time was really just a lot, because you would
think that with this disease, that once you have it, if you get it under remission,
you’re pretty good. You’re going to be okay and things are going to work out,
but it’s like cancer has no respected person. It’s like, it does what it does. No
matter if you follow the right guidelines, do everything you’re supposed to do. It
always has a way of rearing its ugly head and then there you are. So it was a
shock when we had to find out a second time and a third time that you had
cancer. And it was like as though every time you said your pinky finger hurt, I
would start to get nervous and worry about different things going on with you
all the time.
And so you’re on pins and needles the whole time. Every time you go to the
doctor, every time you have a pain, you feel like, “okay, what is it going to be
this time, especially after the second diagnosis?”
[00:05:11] Kim Williams: I don’t think I’ve probably had that same response. I
think because I’m working in the ICU at the time when you told me, I think my
first thought was that, “well, those patients don’t come here, so she’s going to be
fine.” I don’t know that I was worried about you not being okay. I was worried
about how you would handle it and all of that stuff. But I think because I was
already working as a nurse, we saw the sickest of the sick and breast cancer
patients don’t come to my floor.
So my thought was, “this is just going to be a thing that happens. It’s going to be
a memory and then we’ll move on.” And so it was very, for me, I think, clinical
because I could rationalize that, “yeah, this is a thing that’s happening and it’s
not very great,” but the nurse side of me was thinking that it just was going to
be okay, because I didn’t think it was going to be as much happening as it did. I
think that it was a learning, you going through that treatment, even me being a
nurse and taking care of patients and doing all of that; some of the things that
you went through and some of the things that happened, I was unprepared for
and I think that part was probably the hardest part.
[00:06:19] Anita Williams: I agree, and being a mom you want to fix
everything, so. Just like when you were a little kid, you’d fall down, you’d
scrape your knee, your mom put the bandage on it, and you’d move on. And that
was the mode. I just wanted to make sure that you were okay. But unfortunately
with cancer, it’s not like mom can swoop in and fix the situation all the time.
So it’s hard to sit back as a parent and watch your child go through these things.
And you can’t do anything but pray really hard that everything works out.
[00:06:53] Nikki Anderson: I see that. It’s hard from a diagnosis standpoint
because it’s like, “Oh, I have to tell everybody again. Oh, we have to do this
again.” And the first time I kept it pretty, we didn’t really tell anyone the first
time. I think I posted about it after my surgery and that’s how everyone found
out. But this time with breast cancer, I decided to be transparent and just tell
everyone and let them see it, peek in and watch me go through it and my logic
was just, head down. I was terrified. But I was just head down.
I’m just going to show up and do this the best I can because there is no blueprint
and I didn’t really feel like there was an end for me because I didn’t feel sick and
I didn’t look sick. And I was like, “I’m doing all these things. I’m fine.” And, I
had to tell my partner at the time. And I remember once I told everyone, I was
like, “okay, I’m going to go.”
And I went to the lake where I always went. And I was like, that’s my one time
to cry. And I remember sitting in my car and it was raining and purple rain was
playing and it was so just beautifully dramatic, which is me. And I was like,
“okay, so I’ve had this cry. Now I have to focus on this.” And, my mom doesn’t
cry in front of me.
Like she deals with everything that’s going on and she doesn’t cry in front of
me, but she gives me the space to be not be okay. And I always feel like as long
as she’s okay for me, I got to be okay for her. And, I think there were a couple
of times I remember right before I went back to surgery, I was hysterically
bawling as they were wheeling me back.
And, the anesthesiologist was like, “It’s okay, you’ve earned this one cry. But
don’t cry anymore.” He’s like, “you can water your eyes now and then.” I passed
out, so that was great. But, has it been hard for you guys watching this? as far as
like the BRCA2 thing, Kim, did it change things for you? I know you got tested.
[00:09:01] Kim Williams: I don’t think so. I think that based off of everything
he knew, my assumption was that I would have it. And I think that, because of
what I do, I had a lot of trust that it was going to be okay. We’re just going to
monitor. Everything’s going to be fine. Working in the ICU very much made me
feel like everything was going to be okay.
And maybe that was a false hope or a false sense of how things would go. And I
know you had like complications and things that I thought. I never expected. I
remember you sending me a text that day when I was at work telling me that
you thought your incision after you had your mastectomy was open.
And I remember being at work and in my head thinking, “there’s no way, like
that doesn’t happen. These patients don’t come here. People whose incisions
open, they get infected. That’s not a thing.” And just being very much like
telling you like, “girl, it’s fine, don’t worry about it. It’s okay.” And telling you
to send me pictures.
And I remember sitting there and opening up those pictures with one of my
coworkers who had been a nurse for like over 20 years and her looking at me
and me looking at that picture and us realizing, I have to tell you, you have to
go to the hospital. Like your incision’s open. That’s not what I expected.
This isn’t a thing. And I remember her going, “You’re going to call her? Do you
need a minute? What are you going to do?” And I was like, “Well, she’s not
going to let me come. Because that’s just what she does. But this is different
than I thought.” So it’s been kind of from a nurse side, a learning experience of
what these patients go through and how all of this is so much more intense and
so much more goes on.
And so to think that are all these people and all these women going through this
and still just going on casually about their life? It’s pretty surprising, but I think
on a personal level for me, it just made me more aware and more cautious and
to feel like I just have to make sure that I keep on top of it and that I monitor the
way that the positions suggest.
[00:10:58] Anita Williams: Well, and also there’s not there’s a handbook that
tells you as the sort of the supporting team, what to do and what to say and how
to act. You want to be there for that person and you’re worried for them, you’re
scared for them because of all the horror stories that are out there about cancer.
But you have to stay on top of the testing and making sure that you’re taking
care of your body and following things the way you should, but you have to
have a great support team there as well, because going through it alone would
be hard and I understand, you’re dealing with it. It’s easier for someone who’s on
the outside looking in versus someone who’s doing it.
Nikki was really strong. She made good choices and good decisions. We never
let her know how nervous and afraid we were for you, we just supported you as
much as we could. We did everything we could. And on days we took turns, I
think trying to keep each other upbeat and going strong.
So you got to have a good support team to go through this. And it’s good. It
could be a friend, neighbor, just someone to give you an upbeat word every day,
just to keep you going. Because I think the positive is what helps as well.
[00:12:13] Nikki Anderson: I remember when I had the infection, it was a
Saturday night and I was like, I’m a big webMDer and, I sent you the picture
and I knew. But I didn’t go to the hospital because I couldn’t shower yet because
I still had the drains in. So I was like, “you know what, I’m just going to hold off
on this until Monday.” And we called my plastic surgeon and told them. But I
think I had every complication that you could think of. Possibly think of the
expander flipped and I didn’t let that stop me, I just kept going and I know I was
making everyone crazy because I was like, “well, Tim, like I got this.”
I think I went to San Francisco like a month after my mastectomy. And was it
hard? I have this logic that I have to cram as much living into my life as I can
and I’m sure it was hard for you guys watching me just go back to normal life
right after everything happened. But I also wanted to not, I didn’t want you guys
to be afraid for me. So that was part of it.
But as far as dealing with all of this, does it make you scared, Kim?
[00:13:26] Kim Williams: I don’t think that i’m scared. You know my plan,
when I turned 40 before I ended up having Sloan was just to prophylactically
have a mastectomy. That was always my plan. And it wasn’t something I was
afraid of. I don’t have an attachment to that.
And I don’t feel like I felt like it would change my body. It was really just a
matter of, this is just the situation that it is. And I saw what you went through
and I didn’t want to have to do that. For me, it was just like, this is just what you
do to keep yourself healthy. And that is kind of where we are. So I don’t know
that I have any fear. I think my fear about all of this was never about if I was
going to get breast cancer or if something was going to happen. It was always
about what was going to happen to you and you being around. So I was just
always worried about losing you and not having you.
[00:14:18] Nikki Anderson: Well, I’m still here. Mom, do you worry about it?
[00:14:22] Anita Williams: Oh, of course I do. All the time. I think about those
things and I want you guys to be safe. That’s why I want you to get all the
testing that you need. It’s very hard to see your family member go through the
things that you have to go through and the treatments that are out there.
So if you can be proactive and get it done, I think you should. And sometimes I
think there’s too much of a stigma on people. If you need to have a mastectomy.
Yes, do that. If it will save your life, it’s better to go through that than to have to
suffer and go through cancer. So you have to look at it in a positive way and
think about the fact that is not what makes you the person that you are because
of your breasts or because of different body parts.
If it means you having to lose those body parts to still be with your family who
loves you dearly, It’s worth every minute of that, just so that you can have that
family member with you. So, we need to, as a people and as far as America
goes and other countries as well, we need to stop looking at people as objects
and start like thinking about them as human.
Being able to deal with, “okay, yeah, you may have a flaw, but you’re still that
same person. You may have lost your breast, but you’re still the woman that
you’ve always been.” Your breasts aren’t your personality, it’s just a part of your
body. So, you’ve got to think about it as, “I may have lost my breasts, but I’m
still Nikki.”
I’m still that crazy, zany, wild, daredevil person that I’ve always been. I may
have lost my uterus, But I’m still Niki. I’m still going strong. And I think that’s
been the thing that I’ve admired the most is your positivity about everything.
Because, some people would just go away and get sad and depressed.
But, and I know you have your days, but I think you have more updates and
you’re able to encourage other people who are going through and I think that’s
an amazing thing when you can tell your story and give someone else hope that
may not have it.
[00:16:27] Nikki Anderson: Well, my boobs had their own personality and it
was great.
Thank you very much.
[00:16:30] Anita Williams: I’m sure they had their own zip code as well, right?
[00:16:34] Nikki Anderson: They were a force. I don’t know, mom, this is a
question for you. What have you observed about me and Kim? As you’ve
watched us face difficult health issues, what have you seen that you’re proud of?
We are who we are because you instilled a sense of bravery and everything we
are is because of you.
[00:17:06] Anita Williams: I think you guys have been very strong, very
supportive of each other. And just the courage that you have is amazing to me to
know that you have this BRCA gene, but moving forward with your lives and
doing what you need to do and seeing you be strong and being able to, like I
said, encourage other people who are going through.
That I admire most of all, and the fact that you can tell your story and share it
with other people and give them hope. I tell people all the time the different
things that you’ve gone through, and how even though you’ve gone through this,
you’re still standing, she’s still going, she’s still moving, she’s still doing all the
things that she would do.
And she’s not letting cancer beat her. She’s beating cancer because every day
you get up and you put one foot forward and move forward and tell someone
about what you’ve gone through and how you survive. That’s just helping
someone else. I admire you guys both for that.
[00:18:08] Nikki Anderson: Sister, would you like to respond?
[00:18:11] Kim Williams: I think it’s- I think what’s been the best part, things
didn’t change with us. Like, after you had your mastectomy, I got to stay with
you that night, it was just being you. And I remember we were still making
jokes, I was giving you such a hard time, telling you that when you woke,
before you woke up, I was the first one who looked and I was touching
everything and messing with everything.
We had the issue with them not want to give you pain medicine. And I just
remember laughing so hard because I got so mad at the nurse and was like
telling her she needed to call everybody if they weren’t going to treat your pain.
And so it’s just, I think despite everything that’s happened, it has made us closer
and nothing changed for us.
We still had a lot of fun and laughed and tried to find some humor in some of
the things. I think you naming your new boobs what you did or is evident of that
calling them your frankenboobs and just finding humor and all of the situation
has made it easier to deal with everything that it’s still this terrible thing has
happened but we are still going through it and still trying to make the best of
everything and trying to laugh where we can find that.
[00:19:22] Nikki Anderson: I agree. I hate when people call me brave or
courageous because I didn’t do anything. All I did was show up. So that’s
always weird. But, I remember when they had to teach me how to do the drains
and my dressing and all of that at the hospital and I was crying and I was like, I”
can’t do this.”
And you were like, “shut up. It’s going to be fine. I’m coming to the house. “
[00:19:45] Kim Williams: You would cry because you couldn’t shower.
[00:19:47] Nikki Anderson: I did cry because I couldn’t shower. I didn’t get to
shower for almost a month. I had to use wipes. And when we went to Walmart
that day and we had to get the wipes and I was on the live and you were like,
“she hasn’t showered in X amount of days.” Thank you for that. You keep me
humble. Thank you.
[00:20:06] Kim Williams: I could smell you through the phone.
[00:20:08] Nikki Anderson: I’m doing my best here.
But, I think that this has been one of the times that we’ve really, I’ve had to get a
lot of support. And I think that as a family, we have an amazing support system
with, my grandma and my aunts and my dad and my mom and my sister and my
other sister, everyone shows up and sometimes it’s “oh, I wish they were coming
so we could do something fun.”
But here we are, and we still manage to find fun moments, like we did dinner
the night before my mastectomy. And when I went to have my reconstruction,
everyone was at my house and I’m thankful for that because you guys are,
you’re there for me when I need you and even when I don’t think I do, so I
appreciate that. But, how do you guys feel like support wise we’ve done?
Is there anything you wish you’d done different or anything you could have
done better or what do you think?
[00:21:09] Anita Williams: No, I think it’s just a matter of you really just don’t
know what to do and sometimes when you don’t know what to do, you just have
to follow the lead of the person who’s going through. Some days you may have
wanted encouragement, some days you may have just wanted someone to just
listen to you and you speak about how you feel and you say you’re not brave
and you don’t like that, but that’s not true.
You are brave. You are courageous because of the fact that you didn’t let this
beat you. You kept moving forward. You didn’t stop living because you had a
little bump in the road. Well, a mountain in the road, you still managed to keep
going. So I think it’s just being there and being supportive and being able to
listen when the person needs you to listen.
share words of encouragement and just try to stay positive because I think
positivity is the whole key to getting through this and making sure that the
person’s okay. There’s going to be some bad days, but still. You’ve got to always
look forward to the brighter days because there is going to be a brighter day.
You just have to keep moving forward.
[00:22:17] Kim Williams: Mama’s so sweet. She’s just, I want to support you
and that would make everything better. And my thought was like, “this would
have this would have been better if after you had your surgery, you just did
everything that I said and you didn’t argue with me about it.”
Because I feel like I was trying to tell you what to do and try and nurse you.
And it was just constant battle. And so maybe, you can just listen to me and do
what I say and that will be easy.
[00:22:46] Nikki Anderson: That is not really who I am as a person. And you
know that. So why would I start now?
[00:22:51] Kim Williams: Like I, I’m going to ask and that’s what we’re going
to- I’m going to ask for every time and what I’m going to want every time. I just
want to nurse you.
[00:22:59] Nikki Anderson: Is that the best idea? And I’m like, probably not,
but it’s fine. It all turned out okay.
[00:23:05] Kim Williams: It all turned out great and I had fun. And it was good
getting to spend that time with you and that’s when we started watching 90 Day
Fiancé and I made you watch all of those episodes from the first one and you
fought for the beginning and then you were in.
[00:23:19] Nikki Anderson: And now I’m hooked, so thank you for that. That’s
the best part of all this.
[00:23:26] Adam Walker: Well, ladies, I wanted to ask a couple of final
questions. First of all, this has been an amazing conversation to listen to. I really
appreciate you being here. You, just allowing us into your lives in this way, just
to be able to hear you converse in such a way.
It’s just been, it’s been great. So first of all, I want to know, has it been helpful
for your family members to know that there may be a hereditary risk of cancer,
and how has that affected your family conversations and family dynamics?
[00:24:00] Anita Williams: Well, I think it’s a great thing that we know that it’s
out there because cancer, like I said, it sneaks up on people when you least
expect it.
So this to me is like a way to prepare and do the preventative. So I think it’s
been a good thing. Knowing even though it’s bad, but it’s good knowing that
you have that possibility so that we can go ahead and take the preventive
measures. I think everyone should test. They even have the smallest inkling that
they may have that genetic situation going.
[00:24:37] Adam Walker: That’s great. any other thoughts?
[00:24:40] Nikki Anderson: When this all started, I didn’t really know what
BRCA2 was. I had no idea. And they didn’t really do a lot of gene screening
back then. It feels like lifetimes ago. All I knew when they told me that I finally
had something in common with Angelina Jolie. And because other than we’re
both adorably irresistible, but whatever, because she had just gone through this
whole big thing with it.
And that was like the first we ever heard of it. And looking back how little we
knew then and how much things have changed is huge and I hope that maybe
sooner rather than later we can look back at breast cancer as a whole and be
like, “things have changed and it’s gotten better and, people don’t have to keep
going through this.”
So that’s my hope.
[00:25:29] Kim Williams: I think it’s, maybe now because I’m a mom and I
have a daughter and I’m thinking about what this will mean for her. So I will
probably push to have her tested so that we can start her on the journey of
figuring out and monitoring so that she knows what her life could be like in the
event that this does happen.
[00:25:49] Nikki Anderson: Absolutely.
[00:25:50] Adam Walker: So, last question, I’d love for even each of you to
answer here. What have you learned about yourselves and all of this that has
been helpful to you and may also help others?
[00:26:01] Anita Williams: I think to me that you’re stronger than you think
you are. And a lot of times You may feel like when you’re thinking about a
situation that you really just don’t know how you would handle it, but then when
you get right in the midst of it, the adrenaline kicks in and we can handle a lot
more than what we think we can.
And I think the whole key to this breast cancer and cancer in general is
communication and opening it up more to where people are more comfortable
with talking about things and sharing things and supporting each other. You
may be a random stranger, but I may be able to speak something into your life
that may be positive and may help you.
So I think that communication is like the major thing.
[00:26:47] Kim Williams: For me, I think that, I’m still a nurse. I still encounter
lots and lots of people who have breast cancer and have this happening. And my
sister is my story. She is my person I talk about and I tell them all the things
she’s been through and how she is laughed and she had a going away party for
her boobs before she had her surgery and how she just made it as something I’m
going to do and I’m going to be okay. And that’s something I share a lot with
people. And I think it’s a comfort to them to know “Hey, I know someone, I
don’t, I can’t understand exactly what you’re going through, but my sister went
through this. She is my favorite person and she did it and she did it with grace
and was able to laugh through all of it. So you can do this too and we’ll be
okay.”
[00:27:39] Nikki Anderson: Oh, I didn’t want to cry. I’ve learned so much. I’ve
had some time to put this in the background. So, I always tell people when we
talk about it, I’m like, “Oh, but don’t be sad for me. Like I’ve been to Alaska.
I’ve met Mariah Carey. I’ve lived.” I think the biggest thing I learned is I’m not
afraid of anything.
To go through this and come out on the other side and be okay is such a
blessing. And I like to tell people, I am hardheaded and ridiculous, but I get all
of the best parts of me come from the worst moment. And I don’t think that I
could have done this without my family. And it taught me to not be afraid of
anything.
And knowing that I have survived this, if there’s one thing that people take away
from this is that you can do hard things and you have to advocate for yourself,
and when you can’t, it’s so great to have your family there to do it for you. And I
am so incredibly thankful for every day, the good ones and the bad ones.
And, I love telling my story because when this happened, I told my mom, I was
like, “No one has a happy cancer story.” Everyone’s, “Oh, I know someone that
had cancer and it didn’t go well.” Or, and “I tried to live my life to be a happy
cancer story.” And the other takeaway is it taught me to be okay with my body.
There’s so much emphasis on being perfect. I am a chubby, chocolate chick and
I’m never going to be the stereotypical body type and having to stand there and
look at my body and after my mastectomy and everything. And I had this
moment of clarity where I was like, “You know what? My body isn’t perfect,
but it’s okay.”
It has survived and it has not given up on me. And, that is my takeaway from it.
And, now you can’t tell me I’m not amazing and gorgeous, but, no, I just think
I’m very fortunate. And I’m so thankful and so grateful and I will continue to tell
my story to help others.
[00:30:09] Adam Walker: I’m glad, that you’re telling your story. And again, I
just appreciate the openness, appreciate the conversation. It means a lot to this
community and to all of our listeners. So ladies, thank you so much for joining
us on the show today.
[00:30:21] Nikki Anderson: Oh, thank you.
[00:30:22] Anita Williams: Thank you for having us. We enjoyed it.
[00:30:31] Adam Walker: Thanks For listening to Real Pink, a weekly podcast
by Susan G komen. For more episodes, visit realpink.komen.org, and for more
on breast cancer, visit komen.org. Make sure to check out @SusanGkomen on
social media. I’m your host, Adam. You can find me on Twitter @AJWalker or
on my blog, adamjwalker.com.