Full Episode Transcript

Episode 4: You Have To Do It Afraid (with Kandis Draw)

Running time: 1:11:07

Kandis Draw: Caregiving is also, it's rewarding at times, but it's also very difficult. Anybody that's ever done it knows it can be very hard. It's hard as an individual, seeing your parent go through these changes. It's hard. And it's not easy to see that. It's not easy to deal with that.

Jodi-Ann Burey: Welcome to Black Cancer. A podcast about the nuances of our lives as people of color told through our cancer journeys. I'm your host Jodi-Ann Burey, our guest on today's episode is Kandis Draw, a cancer advocate, pianist and writer.

Jodi-Ann Burey: I think many, not all, but many adult children know they'll have to take care of their parents at some point in their lives. At some point, your parents will get sick. At some point, your parents will need help. At some point, we, the adult children, enter into what they call the sandwich generation, middle-aged adults who are simultaneously taking care of aging parents and their own children. But we don't all get sandwiched in that way. Sometimes this thing that might happen to our parents at some point in the future is happening now.

Jodi-Ann Burey: A few years ago, Kandis Draw, when she was just 30 years old, found herself in between jobs with a full-time job, taking care of her mother, who received an unexpected diagnosis of stage four ovarian cancer and taking care of her younger siblings. Like many caregivers, it's easy to lose yourself in the shuffle.

In this episode, we talk about the work, the work of caregiving, and how Kandis turned that work into a mission, serving now as a national advocate for the Ovarian Cancer Research Alliance. We also discussed genetic testing, support groups for caregivers, and much more. Here's my conversation with Kandis.

Jodi-Ann Burey: So, how do you think, you and your mom were alike, and what are some ways that you two are different?

Kandis Draw: We are alike in that when we're very passionate about something, we fight for it. And we really don't care what you have to say about it. We're just going to continue to fight for it. Seriously, it's just a bad thing that I'm seeing, even with me in my adulthood. And I'm like, "Oh man, that was so her." And I see it. Here I am.

Fighting for causes that we believe in, that's another thing she did. Something else, I would say that I got a lot of strength from her working hard. I'd say for both of my parents. But I keep going. I'm able to work through hard situations. And that was her too.

Jodi-Ann Burey: It's so funny because these are the characteristics, what we were just talking about, women of color, black women, who are so passionate about something that they're like stubbornly pursuing something and will work hard at it. And we look at those characteristics as, look at that resilience, look at that strength. And we praise that. But there's a cost in being that way sometimes. Right? It can be a cost to us physically. It can be a cost to our relationships with other people. And when you have two people who are like that, that can be tough.

Kandis Draw: It is because it's almost like you have two alpha personalities colliding, crashing it. And what I've learned in those situations is if somebody doesn't dial back, this could become more and more, because they're not giving in, you're not giving in. So, it's like, where's the middle ground?

Jodi-Ann Burey: Yeah, yeah. No, that's real. That's real. Yeah. I love my mom so much. And I think we're definitely not as close as I think we could be, because I think there are ways that I fight for things, and I see how she fights for things. My mom fights, but our styles are so different. And I think sometimes maybe we don't see each other. There's a miss in that.

I have this soft spot for her in ways I do not have for my father at all. And so, in my mind, I always thought that, as my parents age, I feel like I'm going to be the one, I'll be the one to take care of her.

Jodi-Ann Burey: I also have four other siblings. And I always thought that it would be me, but as life has been going on, I don't know if it would be me. My siblings and I, we talk about this sometimes.

But I think as I've been doing this podcast and talking with other folks, who've lost loved ones and lost parents, even thinking about my own life, there's this sense that our demise happens way down in the future. We get sick way down in the future. People pass way down in the future. And we don't think as much as what happens when there's something that happens suddenly, right? That's unpredictable. That is happening before we expect it.

And so I'm curious, like for you, if you and your siblings had those conversations, what would happen when mom gets older, and maybe how that shifted when the need to take care of her happened way before you expected.

Kandis Draw: We didn't have that conversation. No. To be honest with you, we never, because she got sick so abruptly, the conversation was never had.

Jodi-Ann Burey: It was like, "Mom needs something now."

Kandis Draw: Yeah, now. And so, it was so unexpected. She had health issues as she battled, but when cancer came, it was like, whoa, everything stopped. But so no, we didn't have that conversation.

Jodi-Ann Burey: So, you just picked it up when your mom got sick. Were you home?

Kandis Draw: I was. I was living at home, and me and my younger two siblings, and my dad. So yes, I was the one that was home. In between looking for jobs too. So, what happened was, one job, I stayed there for like four years. Then they went through a whole shifting and they downsized and I got laid off. That same year, she got sick. So, basically, I went from trying to look for employment to now taking care of her. That's what happened.

Jodi-Ann Burey: That's tough. Being in between jobs is so stressful.

Kandis Draw: It was.

Jodi-Ann Burey: Especially, you were? When you were late twenties?

Kandis Draw: She had been sick for about a couple of months when I turned 30.

Jodi-Ann Burey: I don't know what it is about 30, where you feel like-

Kandis Draw: I don't either.

Jodi-Ann Burey: ... 30 is when I should have like the best job. I should be married. I should have kids. I should have a house. Something is supposed to happen at 30. And then when other things happen at 30, either when you don't have those things or you have to deal with some trauma. I got diagnosed when I was 32. You're just like, "What the fuck?" This is not the sauce.

Kandis Draw: How this was supposed to happen.

Jodi-Ann Burey: Yeah. That was not in the plan when I was trying to chart out my life and go to college, and do this and that. 30 is when, it's like the cliff of when all these milestones are supposed to happen for you.

Kandis Draw: You would think.

Jodi-Ann Burey: Yeah. I mean, how did you cope with... Was there a good time to be thinking about coping when you're dealing with such an acute situation?

Kandis Draw: Not at the time, because the diagnosis was so abrupt, so quick. And then it's like, okay, well, life stops.

Jodi-Ann Burey: Yeah.

Kandis Draw: And I was getting worried the more time that was going on, if I was ever going to be able to... But the funny part is that even if I did apply to jobs in that time span, nobody responded. I would get, "Oh, we received your email. That's great. We'll contact you if we have more questions."

Jodi-Ann Burey: "No, bitch, give me a job."

Kandis Draw: Yeah. That's not what I'm asking you.

Jodi-Ann Burey: Dollars. I need health insurance.

Kandis Draw: Yeah. That's a whole nother conversation. And then it was, "Oh, it was fun, even though not right now. And I look you for this. We'll keep you on file." I mean, I'm telling you, I went through that span of period, nothing. Nobody hired me. That's a hard reality for a 30 year old. Now, that I'm out of it, now that I'm seeing maybe that's what I was supposed to do for that time.

Jodi-Ann Burey: It's like the universe is saying like, "You chill." And then you're like, "Dollars."

Kandis Draw: No. Yeah. Universe, "Chill." Me, "No."

Jodi-Ann Burey: I'm not trying to be doing it.

Kandis Draw: The more that that happened, I was like, okay, I'm not trying to experience no more rejection from these. I feel like I'm not getting anywhere. So, I just stopped. I had to accept it for that period of time that's what I had to do.

Jodi-Ann Burey: How did you first learn about your mom's cancer?

Kandis Draw: So, we were at home and it was actually, again, while I was up there, it was the day after Thanksgiving, Black Friday, when usually I'd have been downtown on State Street, somewhere, with all the other shoppers doing what they were doing. For some reason I was just home. I decided not to go anywhere. She started having all these pains. First, she couldn't urinate. And then, it was only a little bit. And then this terrible, terrible pain, she started having in her stomach. And then her whole body started hurting. And then I was at home. I drove her to the hospital. And that's where she got diagnosed. So, it was sudden. It was the day after we had a great holiday. And then the next day, boom.

Jodi-Ann Burey: Yeah. What was her diagnosis?

Kandis Draw: Stage four ovarian cancer. It had actually spread to her liver when it was found.

Jodi-Ann Burey: Getting diagnosed at stage four is tough.

Kandis Draw: Especially that type of cancer, which I found out is the deadliest.

Jodi-Ann Burey: What?

Kandis Draw: Gynecological cancer, because it's usually found in the late stages, because the symptoms look like gas.

Jodi-Ann Burey: Yeah.

Kandis Draw: It looked like regular digestion. And sometimes people think that because you, "Were you going to the doctor?" She was the type, she stayed under doctor, because she had other illnesses. My mother is diabetic and she had blood pressure issues, but those were getting managed. And my mother was always going to the doctor and always telling me about what happened. So, no, it's not that. But with ovarian cancer, if you're not strategic about what you're asking for, when you go to the OB doctor, you're not going to know anything.

Jodi-Ann Burey:

Yeah. I think people get that wrong. Right? They think that if you get diagnosed at stage four, you weren't going to the doctor, you weren't paying attention to stuff. You weren't doing the right thing. There's something wrong with you. Because I think psychologically, they need that to be true, to feel better, if they go to the doctor. And they're doing all the right things. It's like, no, it doesn't always happen like that. And I don't think doctors are screening for every freaking cancer all the time.

Kandis Draw: No. And they don't. When you go to the OB, a woman, a normal OB, you get a Pap smear, that's cervical. They'll have nothing to do with ovarian. So, if you go to there and you don't tell them, "Hey, I need an ultrasound. Hey, I need a transvaginal ultrasound. Hey, I need this. I need you to really, really evaluate me." They're going to do the bare minimum and send you on your way. And if they find something, they'll let you know. Who thinks I'm going to go there and think they're going to tell you, "You don't have cervical cancer." "Okay. I'm cool. Yeah. But other stuff that's going on with me and I'm not saying, I don't know what to ask for." So, that's what happened.

Jodi-Ann Burey: Yeah. That's so frustrating to me for women's health like it's, "Let me touch your breasts. Let me do a Pap smear. All right, cool. You're good to go." And I feel like there's more that we should talk about, do like what is there. And it's just, just like sexism in healthcare, where I feel like there's just not enough done around women's health.

Kandis Draw: It isn't. But part of my work as an advocate is really not just going to the doctor and just accepting this is what it is. Making sure that women know that, okay, you need to speak up. If something is wrong with you and they don't take your concern seriously, you have a right to dispute that, and you have a right to go and say, "No, this is what I need." Because most of the time, if you don't do that, it's just going to be whatever. And you don't have to accept what they say. You don't have to accept that this is the only option that you have. You can demand what you want. And I mean, I mean, it was a hard road. And I'm saying that not as the person that was battling it, but just as the person that was there. And all the things that I learned along the way with her, I said, "Okay. Now, I know what I need to look for, what I need to ask for." And then when she passed, I knew that I needed to get genetics testing.

Jodi-Ann Burey: Listen, preach the word on that. It's on my to-do list. And I honestly, before I started doing this podcast, I never thought about it, but say more about the genetic testing, because I'm like, just preach the word on that please.

Kandis Draw: So, one of the things that I learned about when my mother was going through cancer, and she actually received treatment at Cancer Treatment Centers of America, after choosing what I want to say was a more natural route at first. Because in her mind, "If I do chemo, if I do radiation right away, it may hurt me more than harm me. How much time do I have left?" Because when she got diagnosed in the emergency room, they were saying like a year, but she made it three, but they were telling me a year.

So, I do think that the eating healthy did help her. I won't say that it didn't, lifestyle changes. They do help. When she started receiving care at Cancer Treatment Centers and I started reading brochures when she was doing treatment, and I started realizing, "Okay. We might want to ask a whole lot of questions. We may want to get some answers."

Kandis Draw: And then I start seeing how, okay, gynecological cancers run in my family, because my mother, one of her sisters had something like this. And then I started talking to my older sister and we started seeing some things and I was like, okay.

So, once she passed away, I took it upon myself. I was scared to death. I'm telling you, when you sit down with a genetics counselor and you start talking about this, this, that, or that, I was just like, "Oh my God." And so, then they take a blood test. But they send the blood test away. So, it took a month for my results to come back. And I was up at night sometimes like, "Oh my gosh, the anxiety is about to kill me."

Jodi-Ann Burey: Did they tell you it would be a month?

Kandis Draw: They did say it would be a month, because they won't get the results in-house. They send your blood out.

Jodi-Ann Burey: Yeah. It's in the mail.

Kandis Draw: So, I said, "Y'all sending my blood out in a box somewhere. And what are you going to do?"

Jodi-Ann Burey: You got my [inaudible 00:15:56].

Kandis Draw: I was a nervous. Yes, that's how I was because I was like, "What's happening?" But then I was just thinking, "Oh, what if it comes? Oh my God." So, testing for those BRCA1, BRCA2 genes that happened, asking specifically for a CA 125 blood test for genetics testing. My sister's insurance didn't cover that. But once my mother passed, once I found out that the insurance that I had actually covered it, I went and I did it.

Kandis Draw: And then I started going to the doctor asking specific questions because I knew then what to ask. And I said, "Okay. It's time to be proactive about your own health, Kandis."

Genetics testing, it could be very overwhelming because they sit you down and they have a whole pad of paper. They're asking you all these questions. And I was afraid because it just overwhelmed me. But I'm glad I did it for myself.

Jodi-Ann Burey: I'm fully leaned into the camera here because I'm just like, I'm so stressed out listening.

Kandis Draw: Don't. No. Because when the results came back and they said, "Oh no, Ms. Draw, you do not have the BRCA1 and 2 genes that causes cancer. You don't have this." I was like, "Oh Lord, thank you." But I have met women and going through ovarian cancer, even some that I know very closely on the things that I've done, some of them were not so lucky. Okay? Some of them, the blood test came back, that they did have the genes and they did have, so that they were predisposed to get this.

So, then I guess the point is you go to your doctors and you come up with a plan of action. Come up with a plan, how are we going to deal with this? How are we going to come back at this?

Some women chose to get a hysterectomy. Some women chose to like, "Okay, just take it all." Again, the point is being proactive about your health and knowing what goes on in your family. So, what they recommended for me was that I do genetics testing once a year. No, excuse me. At the time it was do it every two years. And once I turned 40, once a year, which is next year. Lord have mercy.

Jodi-Ann Burey: No, it's on my to-do list. And they have pages of things I've to do. And I cross it out, cross out, cross it out. And every time I flip back, the reason why I can't tear this one page out is that the genetics testing is still on that page.

Kandis Draw: Take a deep breath, and go. Say that, "I'm doing this for me." Because I was in there like, "Okay. I'm about to go nuts." But you have to. In my opinion, it's very beneficial for you to do it.

Jodi-Ann Burey: Can I get some free therapy from you right now, real talk?

Kandis Draw: I don't know because you don't pay me per hour, Jodi. So, I don't know if you can get some free therapy. If you say energy [inaudible 00:18:47]. Go ahead. Go ahead. Later on. Go ahead.

Jodi-Ann Burey: All right. I don't know if I'm afraid of genetics testing. Yes, I do think that walking into the doctor's office, talking to a doctor for an extended period of time about your history, and all this stuff that things could be, I think that is something itself to be fearful of. I don't think I'm fearful of that. What I'm fearful of, and I think a lot of people also have fear around this is, I don't want to have to go through what I went through again.

Kandis Draw: In your case, I can understand that because you had already been through it.

Jodi-Ann Burey: I know what I'm going to do, right? Then your whole to-do list, everything gets taken over. And if I know that I have the skills to manage that, but I'm just like, I don't think I'm emotionally there. So, real talk, I just had my annual gynecological appointment, which is a whole song and dance for me, because as soon as I put on a medical gown, something happens to me emotionally, that I'm like, "You're going to be fine. You're going to be fine." And then the gown comes on and I shut down. Just doing the Pap smear is just like, I cry for it. And it's like what? A few minutes. It's a lot for me emotionally. And it takes a long time.

Jodi-Ann Burey: Anyway, so she has her finger all up in my stuff, filling my ovaries. And she tells me that like, she thinks one of my ovaries is enlarged and I need to go get an ultrasound. And I have not called to make that ultrasound. I said to her flippantly, because I have some beef with her too, because last year she told me, she made me feel like I was a sick person, and I didn't like that, but I didn't have the strength or energy to find a new gynecologist. So, I'm just staying with her for the Pap. And I said, "I'll deal with cancer next year." Which is so dumb. Right? I was like, "If I have ovarian cancer, I'll deal with it next year." And I said it flippantly.

Kandis Draw: But Jodi, you're thinking worst case.

Jodi-Ann Burey: Yes, because I've been through the worst case of a test before. You know what I'm saying?

Kandis Draw: You have.

Jodi-Ann Burey: I've been through the worst. I have showed up to an MRI thinking, "All right, boom, let's go. It's my lunch break. I'm going to go back to work after this. Everything is cool." And then I go back to work and it's not cool. The rest of my life changes from that one moment.

Kandis Draw: You're just not ready.

Jodi-Ann Burey: As much as I advocate for like, "You need to go get tested. You need information. You need this. And I believe that Kandis, truly, truly, I believe in my heart, and I'm in it. I've a potentially enlarged ovary that could most likely be nothing. But I have been on that 1% chance that it is something before. And I don't think I have the emotional strength to deal.

Kandis Draw: Again. Right.

Jodi-Ann Burey: Again. It is so counter to what I believe. And I cannot get myself to call this freaking place to do the stupid ultrasound. And I know I'm not alone. I'm sure there's someone who listens to this also feels that way. I'm sure you meet people who-

Kandis Draw: I do. Yeah, I do.

Jodi-Ann Burey: What are your thoughts?

Kandis Draw: I have not been to through what you have been through, of course, so I can't say that I sit here and I know what that's like, because I don't.

Jodi-Ann Burey: But you've been close witness to.

Kandis Draw: I just know that just dealing with my mother and seeing how it was, it can weigh on you. You're fearful for good reason. But I think that you still have to, I don't want to say keep fighting, because I don't know if that's the right way that I should say it, still take, "Okay. Something could be wrong. Something could not be wrong. I'm not going to know, but I do need to go in." And do you pray?

Jodi-Ann Burey: In desperate circumstances.

Kandis Draw: Excellent. Okay. Because I had to pray to keep my nerves down, just with the simple thing that I did it, simple freaking blood tests. I'm over here if it is going to break out in halves.

Jodi-Ann Burey: I hear that.

Kandis Draw: Because I just was like, "What if it comes back? Oh my God." And I always think that we always struggled with that, with the what ifs.

Jodi-Ann Burey: Yeah.

Kandis Draw: It could be nothing. And then in your mind, "Okay. Well, what if it is?" And then I'm going to have to go back through this craziness again. And I just don't want to do that. I say do it when you're ready.

Jodi-Ann Burey: But the thing about cancer as you know is time.

Kandis Draw: And time can cost you years of your life if you're not proactive.

Jodi-Ann Burey: Yes. And so, there's part of me, even in talking about this right now, I say this to people all the time, it's just like, I just got to say it to myself, it's like, "Yes, you are afraid."

Kandis Draw: But you do have to do it.

Jodi-Ann Burey: And do you do it.

Kandis Draw: You have to do it.

Jodi-Ann Burey: Those two things exist. Right?

Kandis Draw: Yes.

Jodi-Ann Burey: The fear doesn't have to impact your actions. You have the fear. And also, do what you have to do.

Kandis Draw: It's almost like the whole, you have to do it afraid.

Jodi-Ann Burey: Yeah. Yeah.

Kandis Draw: It sucks.

Jodi-Ann Burey: I was like running scared or something like that.

Kandis Draw: Yeah. Because I was going to run up out of there room. I'm sorry, I was. Oh my God. But then I said, "Okay. No, if you say Kandis that you are an advocate, if you say that you believe this, I'm going to need for you to just do what you have to do?" And that's what I had to tell myself.

Jodi-Ann Burey: Yeah.

Kandis Draw: And to hear that when I worked on the National Ovarian Cancer Coalition, the Illinois chapter, how I met so many survivors, and the key for ovarian cancer surviving is, the chances of your survival are greater when you catch this thing at least stage one or two, because late stage with that, it gets so difficult. Cancer in general destroys the body. Okay. Let's just be real about that. But the key with that is catching it early.

Jodi-Ann Burey: Yeah.

Kandis Draw: There was a lady on there, who I became really, really good friends with, but she passed. She lost her fight and she passed from it, and I was so sad about it. She fought a long time. I mean, we became very good friends. I remember the last run-walk she went to, she told me that treatment wasn't working. And then a couple of weeks after the run-walk, they transferred her to hospice. So, I was like, "Oh my goodness, it's rough. It's brutal." I'm good friends with an oncology nurse that specifically takes care of ovarian cancer. And she talks about how it's no joke.

Jodi-Ann Burey: Yeah. I want to ask you about the fight. When we talk about cancers, there's just like, there's such violent language, like fight and battle, and warrior, and all this kind of stuff. And to me before my experience, that's a lot, that's heavy language. Right? And then you're in it. And I didn't have chemo, which I know is like a very cyclical battle. But in my situation, the touch that I had with why that language actually is really appropriate is what it takes to wake up, still be in your body and having to continue to make decisions, to keep yourself going. It's like if an elephant was sitting on and you have to get out of bed, you're going to struggle.

Kandis Draw: You are.

Jodi-Ann Burey: It's so physical. It's so visceral, just trying to just be in your body and trying to face this, invisible elephant, that's weighing you down and just making just every single thing that you have to do so hard. As someone for you as your mom's caregiver, when you think about that language around like fighting and battling, what did that look like? Not just for your mom, but also for you. I think people forget that. For caregivers, they are also battling and fighting. What are your thoughts on that?

Kandis Draw: I was a fighter in general, but she was a fighter at dinner. Seeing her the cancer journey, I mean, there were days that she had that were good. And then there were other days I would see the weariness on her face, and how it's like she was struggling. And she wasn't admitting she was struggling, but I knew it. Then there were days where she would just literally break down and cry, and I would sit there with her, and I would hold her hand and tell her it was going to be okay, "Mom, we're going to work through it." And in my mind I was thinking, "This is rough." I really, sometimes I didn't know what to say other than to just sit there. And yes, you hear the cancer warrior, "Oh, we're going to stop this. We're going to do that." Okay.

Kandis Draw: When you are diagnosed with the cancer and your prognosis is not long to live, the last thing you want to... and when you have those bad days, giving up sometimes becomes easier than fighting on. The last year of her life, I could tell this was really starting to weigh on her, the swelling, her legs, how I would get up in the morning, and how some nights it would be rough. Some nights I had to be up all night with her. And it took a lot out of me too.

But I have two younger siblings at home. They were still in school. So, after being up with her all night, "Okay, guys, let's go."

Jodi-Ann Burey: Oh my God.

Kandis Draw: "Let's go." So, I was trying to sleep whenever I could. I was very tired, very tired emotionally and physically just tired. I remember when just something as simple as taking showers and baths became very difficult for her to actually have to get in by herself or whatever. So, it took like over two weeks for us to just get a shower chair delivered to us.

Jodi-Ann Burey: Oh my God.

Kandis Draw: I remember that. And I was on the phone with the insurance going like, "Where is her walker? Why are y'all playing with me?" I really got upset. And when it finally came, and then it was easier for her to bathe. I had to be the one to go in there and bathe her. And she was grateful, and if we were talking again, but I could see the weariness on her face and how difficult it was getting. That's where relationships are vital. Okay. I say, because you get with other women who are fighting cancer as well, and you exchange information and you exchange strengthen, and you talk as a way of bonding and trying to keep each other motivated to keep fighting.

Kandis Draw: We met a lot of people at Cancer Treatment Centers, because along with the regular treatment of doctors, you do have support groups. And then there were some other women that she knew that were also fighting cancer, and a very good friend of the family that was diagnosed after my mother was. So, this was something with a completely different kind of cancer.

Relationships and having that support system is something that's really, really vital for anyone who's battling cancer. You need support groups. You need to hear that things can get better. You need to hear of other options, and not things that other people are struggling with to help you.

Cancer is a long road. I think anybody with a chronic illness or any type of disease, it's a very long road and you need other people. Other relationships, they are they're vitally important. I learned that myself because I remember she had just had a procedure. She was asleep and I had gone to a support group.

Jodi-Ann Burey: For caregivers or?

Kandis Draw: Yeah, for caregivers while we were there. So, I met so many people and heard so many stories. And it was like, people were crying and talking about, "Oh my gosh, I can't believe." And all the time I was thinking, "Man, I feel like alone and isolated." And that's another thing caregivers go through, alone, isolation. And you don't feel like you have much meaning in your life. You just feel like, "I'm just here." Just there. Sometimes you feel like you're a burden to other people, because the weight of caregiving can be so difficult. You don't want to feel like you are spreading your problems to other people. You don't want to look like the complainer. That's why you need a support group for that specific issue.

Jodi-Ann Burey: That is so real.

Kandis Draw: So, that you're not constantly wearing your friends down. And again, friendships are key to0. Getting you out of the house every now and then, bringing you food every now and then, so you don't feel like the walls are closing in on you.

Jodi-Ann Burey: Did you have friends at the time?

Kandis Draw: I did. Oh yeah. I had a good support system, and they knew and understood that I was looking after my siblings too, the two younger ones. Oh my goodness. But I'm like, "Okay, did I just wake up at 6:00 to get them ready to get out the door, to come back home to deal with mom." Man, I bought food and I went here, and I did this. Then, "Oh, shoot, it's two o'clock, let me go get this one. All right, let me go and get this one. Did we eat? Oh, this one has choir rehearsal. Let's get her. Oh, this one has this." And then I'm back home. And then it was repeat. Oh my God. This was an everyday thing.

Jodi-Ann Burey: Which makes sense why you stopped looking for a job.

Kandis Draw: What am I looking for? Where was I going, Jodi, seriously? Where am I going? Nothing was working out when it came to that, so I just stopped.

Jodi-Ann Burey: Yeah. And then, what would be the option for your family? I don't know.

Kandis Draw: Hiring one hell of a nanny.

Jodi-Ann Burey: Come on, Mary Poppins.

Kandis Draw: Look, wait a minute. Look, I had this spoon full of sugar. I wasn't doing my thing. Oh my gosh.

Jodi-Ann Burey: So, what were your friends doing for you at that time to help you out?

Kandis Draw: Okay. Believe it or not, one of my friends would just sit on the phone with me. That's all I needed to do.

Jodi-Ann Burey: I love that.

Kandis Draw: One of them just would sit on the phone. Since the most I could talk a bit at night. I would just call at random times. And the thing is, I said, "Please tell me I wasn't doing this crazy stuff, and y'all had to get up and work every day. Please tell me I wasn't doing this." And they were like, "Kandis is you." I said, "Okay, I'm so sorry, y'all." And then they were like, "No, we just slept with the phone like this on our face. And every time you'd call, it'd be like, "Oh, answer the phone." When I heard that, I was like, "Oh, I'm so sorry, y'all."

Kandis Draw: I have friends that invited me out every now and then. I had friends that would bring me treats. I had friends that would listen to me. So, I did have that. I can't say I didn't. I did have it. I was one of the lucky one, because some people don't. As I've seen in these groups, some people don't have it.

Jodi-Ann Burey: Some people don't have that. Yeah.

Kandis Draw: Some people don't have that.

Jodi-Ann Burey: I think it's good to definitely have that person, but also different types of people, who serve different purposes, "This is the person I'll go out with. This is the person who's going to sit on the phone with me. This is the person who might bring me some food."

Jodi-Ann Burey: I also had people who had different styles of talking to me. So, I had one person who would just like talk about everything else, which sometimes I needed that. And then I had another person who could problem solve with me on the actual thing that I was dealing with.

Kandis Draw: Yes, that's so key. And another thing that I found in caregiver support groups is, and I experienced this, is that, you have some people who feel like you're stupid for even doing what you're doing.

Jodi-Ann Burey: Wow.

Kandis Draw: And why I say that it's, you could have put them somewhere. You didn't have to do that. You could have just done that. You experienced that too. And you also get the other side of, "Okay. Well, if they're not listening, you don't have to do that, you could just leave them where they are." And I have some people, who think I was stupid for taking care, stupid for even being bothered with all the stress. And why should you stomach? Why should this?" And it all coming from, I don't want to say it was judgmental, I'll say that, you're not sympathizing with the other person. Why should your life have to be on hold? Why should you have to go through all of this? I'm like, "Okay. Well, what if your loved one got sick or you were ever faced with the challenge of, okay, you ain't working because you chose not to." It was a bunch of stuff that I was hearing throughout the years. And when I sat with other people that was a common conversation.

Kandis Draw: Early last year before the pandemic hit, I was fortunate to sit on a panel, where it was doctors and nurses, and talking about cancer and everything. But I sat on a separate panel, where there were people who had battled cancer, people who had took care of loved ones. And so, I was able to get my perspective.

One of the ladies that sat on the panel actually spoke candidly about how, "I'm taking care of a loved one and I can't work full time. I lost my house. I lost my car. My kids didn't have a place to go." And another girl said the same thing. And I was very candid about that. I said, "Everyone is not so lucky. I didn't have to worry about where I was going to live or how I was going to eat." Okay? There are families that don't have that option, "Okay. Mom, dad, don't worry. We don't have nowhere to go." "Okay. But I'm in treatment full-time and I can't work, or I don't have any money coming in." And how difficult it is to navigate the system to see, "Okay, can I get money for taking care of a loved one? Can I do this?" It's a very, very difficult taxing process.

And again, I was one of the blessed ones. I didn't have to worry about that. My father was working. He was there. That's something that I was blessed to have. But to hear other people that did not have that, who lost. Some people lost everything. And then it took forever to get like, I haven't had children on my own, but to hear how I couldn't work, because my job wouldn't give me disability or my job wouldn't grant me this, I couldn't work from home. And then I lose this. And then me and my kids don't have no place to go. I mean, that's a real thing. And in black and brown communities taking care of a loved one, that's just something that we do.

Jodi-Ann Burey: That is the job.

Kandis Draw: That's just something that we do, is something that happens. And we're not always quick to put mom or dad, or whoever it is into a facility. Nursing homes don't have that good of a reputation. We're not trying to do that anyway. That's just something, I even want to say in our communities, that's even expected, you're going to take care of your mom. Or you have parents that are saying, "You better not put me in a home." So, you have that too, where they're like, "Don't you do it."

But that's one of the questions that I used to get all the time on, "why you even just sitting on your way?" And I'm thinking, "So, what if it was your mother, your loved one, would you really have the same attitude? Would you still feel this way?"

And some people that I met and know recently, they love their parents, but they're willing to hire helpers to take care of them. And if that's what you want to do, that's fine, whatever works for you and your family. But other people don't have that option. And when they said that, they didn't even think she would last over a year. I felt like, "Okay. Well, I'm home. I'm going to have to step up and do it." That was my mindset.

Jodi-Ann Burey: As well, because you didn't have a close relationship. I think that's how ingrained it is. I don't want to say an obligation, but that is where you fell in line. That was your default of like, "I'm going to take care of this person." Even though you weren't close. Well, there's this like external sense of what options do you have? Some people choose to do that. Some people choose to have help. Some people choose to put their loved one somewhere else. But I think it's a very personal choice.

Kandis Draw: It is.

Jodi-Ann Burey: And it's also a logistics decision as well, like what do I have the option?

Kandis Draw: Like what will insurance cover? Will they cover anything?

Jodi-Ann Burey: Exactly.

Kandis Draw: Do we have the money to even be putting somebody up? Or do we even have the resources for that? To hear that some people chose that option, I mean, that's fine for you. And the hurtful part is, to even be criticized because you choose to take care of a loved one.

Jodi-Ann Burey: That's the thing, you don't know people's business.

Kandis Draw: No, you don't. And it's not your right to say that.

Jodi-Ann Burey: It is absolutely not your right to say that.

Kandis Draw: And what I learned as I was going along is that, if you have somebody and you know that they're going through that, it's your job to be compassionate towards that person to be understanding, because you don't know all the ins and outs because they may not have shared it with you. They may not have shared it. And they don't have to share it, but you can at least be sympathetic. But I don't know. Maybe some people just don't feel like, "Okay. Well, that's your problem. I ain't got to deal with that." Okay. That's true. But if it is you one day, what will you do?

Jodi-Ann Burey: Exactly. Exactly. What will you do? And I think you're taking your own information to try to apply it and use that as the yard stick for someone else's decision-making, it doesn't make any sense. And if you haven't been through the situation, you have no idea how to make that decision until you're faced with it.

Kandis Draw: Yes.

Jodi-Ann Burey: I'm just so grateful that you had access to caregiver support groups, because I don't know if that is something that people even know really exist.

Kandis Draw: A lot of people don't.

Jodi-Ann Burey: Yeah. Or have the space to seek it. Right?

Kandis Draw: I can tell you while she was going through treatment, I didn't know they existed. I didn't know they existed until she started getting care at Cancer Treatment Centers. That was the last year or so of her life. That's when I found out about it. I didn't know that organizations like the Wellness House or Gilda's Club existed. Here are things that are available, and they're free for families. And here are some things that we hear free, "Hey, what do I got to do?"

Jodi-Ann Burey: Sign me up.

Kandis Draw: Once my mom passed, and when I finally went downtown and saw what it was. And I'm on the associate board at Gilda's Club, Chicago. And when I found out about it and how, "Oh, they have kids programs. Boy, I wish I could have dropped my brother off here for a couple of hours, instead of running around Chuck E Cheese with him." I didn't know all these places. Oh my God.

Kandis Draw: But caregiving is also, it's rewarding at times, but it's also very difficult. Anybody that's ever done it knows it can be very hard. Your loved one is not always very cooperative with you. Again, my mother got an attitude. Essentially, one day, I just sat back and looked at her and was like, "Look here, we going to do it this way." I said, "Okay, mom, I'm in charge now. I don't know what you're going to do." She's like, "Well, you're right, Kandis. You are in charge now." "Thank you. So, this is what we going to do, beause you..." It's hard as an individual senior parent go through these changes. It's hard.

Jodi-Ann Burey: Yeah.

Kandis Draw: The sicker my mom got, there were some days she wasn't in her right mind. Because one day I had taken a nap, and then I wake up, and I see she not there where you go, and then she walked back in the house about 10 minutes later and, "Well, Kandis, I think you should watch me, because I thought something happened and I didn't know." That started happening. That started happening. And then I was like, "Oh my God."

Kandis Draw: Then there were other days where she was right out mean. Again, something that happens. I had a friend whose mom was the same way towards her. They didn't have that relationship. You start battling the illness, you start filling stuff, you want everybody away from you. Listen, again, that's what happens. And it's not easy to see that. It's not easy to deal with that.

Now, I've been in hospitals where I've seen loved ones get right down belligerent with their kids, to where their ages don't matter. I've seen it and I'm like, "Yep, it's going to happen."

Jodi-Ann Burey: And that's wild. Right? Because normally when somebody is popping off on you, you're going to pop back or you'll leave, but you're in a situation where you're experiencing this behavior from this person, and are you channeling compassion? How do you actually manage it in the moment?

Kandis Draw: No, because at the moment, at the time you're upset too. Okay. You're like, "Stop snapping on me." You do fight. It happens.

Jodi-Ann Burey: Yeah.

Kandis Draw: There were some moments I was telling her, "Look here, lady, what is wrong? What is your problem?" And she would do things to say she was sorry. Okay?

Jodi-Ann Burey: Yeah.

Kandis Draw: Again, during treatment, one day, Cancer Treatment Centers has shuttles. So, they put us up in a hotel and then they had shuttles. And then the shuttle would come and I would help her on the shuttle and sit down. And she would hold my hand really tight or put her head on my shoulder, and start saying, "Kandis, I'm sorry. Kandis, I'm glad that you're here." She didn't really have the words all the time, but she would do stuff like that, which made me feel better. "My goodness, I don't want nothing bad to happen to you." Or sitting across the table, and we were meeting with the chaplain, and then she cried another time. And then I grabbed her hand and, "Mom is all right. We're going to work through some things." Those type of moments.

Jodi-Ann Burey: When we think about the ways that you could have been supported or maybe getting into the caregiver support groups earlier in your process, or having help with your sibling, I think there are two sides of it. These organizations and these resources doing more to make sure that people know that they're available, as well as people who are needing those resources, what they can do to find the resources that they need, which is so tough because you spend all day on the phone with insurance, you're dealing with this person, you yourself are emotionally taxed, physically taxed. And then, you have to go find resources. It's a lot.

Jodi-Ann Burey: So, I think there are two projects here, right? The people who have the stuff, "How can I get that stuff out to people?" The people who need the stuff, how are they managing everything that they're managing and what they can do to make sure that they get the help that they need?

Kandis Draw: Okay. Well, that's a tough one. What I had to do was a lot of research. And I was doing that in between picking and shuttling kids around. And when she was sleep a lot, I would look and see, "Okay, what can we do? What can we do?"

Another thing is, is that if you're tied to a church or some type of faith-based organizations, seeing if they have a cancer ministry, seeing what their health department may have. At my church it was called Health and Temperance. But at other churches, see what their ministries are, and seeing if you can connect that way. Because I know a lot of churches do have cancer ministries or cancer support ministries.

Jodi-Ann Burey: That's amazing.

Kandis Draw: I've seen where the hospital may have cancer support groups that meet at certain times. And just, I guess, being proactive about it, sometimes you feel caregivers can feel resentment, fear, anxiety, under appreciated, overwhelmed. And that's normal. It doesn't make you a horrible person, but it makes you a person, you're in a stressful situation. Okay?

Jodi-Ann Burey: Oh yeah.

Kandis Draw: So, I got tired of it always being, "Okay, you took on responsibility." Maybe it was dropped on you. People sometimes they go, "Okay. Well, this person was reliable, they can handle it." But that doesn't mean that person always wants to feel that way.

Jodi-Ann Burey: Exactly.

Kandis Draw: You'll have to manage everything and coordinate care. You sometimes have to do stuff, you never even wanted to do. Again, that adds to the stress.

Kandis Draw: There were some days my heart was just completely broken. I didn't even know what to do sometimes. I could stay there for a while, I was walking around numb. And what caregivers really need is a lot of reinforcement, a lot of, "I see the job you're doing. I'm so proud of you. I'm so glad that you're sticking in there with her. You didn't have to do this, but you did. And I'm so glad that she had you." When I heard those positive reinforcements from people, I felt a lot better. Mother and I had moments that were bad, but what brought it all to me, I just wanted to know, "Okay, mom, do you even appreciate? Do you even care?"

Jodi-Ann Burey: "Do you seen me?"

Kandis Draw: But when she apologized to me, and when she told me she loved me and she was sorry, she knew that what the last couple years had done to me, she knew that I gave up a lot. And then she was sorry. I mean, I felt that was great. That's really all I needed. It's like a weight came off of me. It was like, it's just, I was fine after that. Because that's all you really want to hear. It's great, and you hear from other people, but you want to hear from that person.

Jodi-Ann Burey: And having that weight come off of you can give you that boost to get more information, get more resources. It keeps you in the fight, right?

Kandis Draw: Yeah. And what caregivers have to do is, and this is not easy, you have to ask for help. Okay. You have to ask.

Jodi-Ann Burey: That's hard.

Kandis Draw: No, it is. And you can be very scared to ask. I know I was. I didn't even know. Sometimes I didn't even know what to do.

Jodi-Ann Burey: How do you ask for help? What does that sound like? What did that sound like for you?

Kandis Draw: For me, it was going and knocking on the door like, "Hey, remember me? Can you come help me for a second?" Yeah, I started doing stuff like that. That was one of those, "Hey, help now, please."

Kandis Draw: There were days where I would just sit and be like, I was crying so hard one day and a friend called me and she was very soothing and she understood. It's like, she called me at the right moment. I was so grateful because I was like, "Oh, thank you so much." I think I was hard on myself too, feeling like I had to do everything. I felt like I had to just make up the difference. When I learned that it was actually okay, that I didn't do everything, it was actually okay that I didn't have all the answers, that was a very liberating moment, can I tell you.

Jodi-Ann Burey: How did you get there of like, "I have to do everything. Actually, it's okay for me not to do everything."

Kandis Draw: Because I learned that as long as I was there, I was doing the right thing.

Jodi-Ann Burey: And I think that's important for people who support caregivers too, that if you're there, that can be a big help. It's funny when you talk about asking for help, I set up a Facebook group, my crew, I call them the Tumor Troop. Right? So, I have my troop.

Kandis Draw: I like that.

Jodi-Ann Burey: Yeah. Thank you. So, I was like, "All right, we've got the Tumor Troop." And there were people from all different parts of my life, family members, friends from college, friends from Seattle, people who knew me in this life. I had seen my whole social network, just a sampling of folks in this one place, which was so weird because I don't mix my life in that way. I think I keep everything very compartmentalized. And then suddenly everyone was in this Tumor Troop.

So, I would just post like, "Hey, I need this. I need someone to research this. I need that." And people like, "All right. I got this. I got this." And even though they didn't know each other, it helped me to just put the call out.

Kandis Draw: That's so great.

Jodi-Ann Burey: But then it also backfired. Right? Because I was presenting as super organized, as someone who had a lot of support, that people forgot, I think to actually check on me emotionally, "Are you actually okay?" For those moments when you're crying, for those moments that you're breaking down. When it was just me and not me as a project manager, right? It's easy to forget that there's a person who is doing all of this.

Kandis Draw: And a person who is overwhelmed.

Jodi-Ann Burey: Yes.

Kandis Draw: Because once my mother died and I was able to start getting help, because I started having very bad nightmares, about times where she was in the hospital and in so much pain, and she was screaming, and then I have to go and run. I mean, that stuff started to replay in my head. And I started having very bad nightmares. And I started going to therapy to help me work through all of that. It helped me work through a bunch of stuff, when I started feeling normal again.

Jodi-Ann Burey: Yeah.

Kandis Draw: I just think when you're caring for loved ones, you're going to have your good days and then you're going to have your bad days. And as long as you're there and doing everything you can, it's going to be all right. So, one of the things you have to tell yourself, "I'm here doing my thing. I'm present. That's all right."

Jodi-Ann Burey: And it's interesting now though, thinking about you being there and that being enough, you are showing up in the cancer space way more than just being there. You are working in this advocacy space. That is huge for the community and I think maybe even in your own process as well. So, can you share a little bit more about how you got into just doing this?

Kandis Draw: Really, I didn't start being a cancer advocate like that. I joined the National Ovarian Cancer Coalition, the Illinois chapter, and I started helping with the run-walks, and learning about the history of the organization, learning about this. And I said, "Oh, you guys existed? I had no idea."

Kandis Draw: I think what you don't see in these spaces, the more I've been there, you don't see enough black women doing it. You don't see it, a lot of participation from black and brown communities.

Jodi-Ann Burey: In these formal institutions.

Kandis Draw: You do not.

Jodi-Ann Burey: Or organizations.

Kandis Draw: Or organizations. Right. So, that was one of the ways that I felt like I could become more active. I didn't become a national advocate till I found out about maybe a year or two ago that they actually had national advocacies.

And so, what happened was once I became a national advocate, I was able to now travel to Washington DC. And so, I was able to do that. Right before the pandemic hit, we made it to DC. And that was my very first advocacy day where I learned a lot. You go through a lot of trainings. And I met other national advocates from around the country that were all advocating for ovarian cancer for important bills to be passed because ovarian cancer is funded under the Department of Defense.

Jodi-Ann Burey: Wait, what?

Kandis Draw: Ovarian cancer research is funded under the Department of Defense. So, when important bills hit the floor, you have go to your state and Senate leaders, that's part of advocacy day, asking them to please sign these important bills. Please endorse these bills. So, that's what you do when you go become a state advocate.

Kandis Draw: So, for me, it was Dick Durbin, Tammy Duckworth. Those are state senators. You go and you either meet with them in person. Sometimes you're lucky and you get them. You always get a staffer. I saw Tammy Duckworth. I didn't see Dick Durbin because he wasn't in, but you leave an ask.

And so, the way that you're successful in your advocacy is that you constantly, every time they look up, they need to see you. Every time they look up, their staff need to get an email from you, "Hey, did you support this? Hey, did you know this?"

Jodi-Ann Burey: Wow.

Kandis Draw: And that's how you get it done. And one of the girls that I became good friends with, every time Advocacy Day came, they knew she was coming because she would, because her mother had ovarian cancer. So, she was like, when she would walk in, he would be like, "Okay. What did I not do? What did I not do?" That's what has to happen.

The longer I've been a national advocate, this is my second year, I noticed that every cancer has an advocacy day, where you can go to the Hill and advocate for colorectal cancer, for breast, or for something. So, it was very eyeopening.

Kandis Draw: I have never eaten in the US House of Representatives, but it was delicious. Let me just tell you.

Jodi-Ann Burey: I'll put it on my list of things to do, to go eat at the-

Kandis Draw: Delicious. I said, "Oh, where are we going next?" So, yeah. And then it's so cool to be around other advocates from Illinois, that you guys sit in the same meetings with the same staffers, with the same ask. And you do a lot of followups as part of the Advocacy Day. And the point is, is to let them know you're serious. And by doing that, you have to be one of those annoying people. And every time you get up, "Do I see you again? Why do I see you again? Why are you in my face?" "Because of this? Yes. How will you get it done?"

Jodi-Ann Burey: Listen, at first, in my mind, I'm like, just sign the bill is for cancer. Just do what you have to do. But listen, there are a lot of things that I want to do that are still in my inbox. And I'm like, if someone doesn't ping me a lot about it, it just doesn't get done. So, now I can get it. At first, I'm a little irritated just, "Sign the bill. I shouldn't have to be here advocating."

Kandis Draw: Yes.

Jodi-Ann Burey: But there's so much going on. I guess, I get it, that whole process of them needing someone to really just be in their face and try to get some of the work signed.

Kandis Draw: It's like that annoying little kid tapping on your shoulder, "Hey."

Jodi-Ann Burey: Yes. Yeah. You're like, "Oh, what do you want? Do you need a lollipop? All right. Let me just give me him a lollipop." What do you see to be compelling? Right? Because if someone says, "Hey, can give me money for cancer." I'm just like, "Yeah, girl, here's some money for it." But everybody wants money for their cancers. How do you become persuasive in your advocacy for it?

Kandis Draw: Well, there are some national advocates that have been advocates for years that got it down pat, as to what they ask and how they ask. One of the things that they do is they make sure that throughout the year they have some type of correspondence with their state House or representatives leader to where they know the Advocacy Day is coming up, "Here's when you can expect me. These are the asks. This is what I'm asking for." Usually if you have a connection, whether it was a loved one, yourself, or if you've had cancer, that's another one.

Kandis Draw: My House leader is Representative Bobby Rush, here in Chicago, Illinois. So, he has had cancer. He signs everything cancer. He literally supports it when it hits the floor. Sometimes you have to be a little bit more persuasive, and that's when I guess, they said that professional storytelling comes in, why I'm doing this, why this is important, and here's why we need it.

So, the more that I've done, it's like my second year, but the more that you do advocacy work, the better you get at it. It's something that you really have to put time and really know how to talk to them.

Jodi-Ann Burey: It's a skill. It's a craft.

Kandis Draw: It's a skill. For people who were not as experienced, like there were a couple of new advocates that they help you with training. They'll tell you some things to say how to craft your story in a way that will grab their attention and have them sign bills. So, yes.

Jodi-Ann Burey: But do you find that that retraumatizes you in some way? There are a lot of ways that I integrate my story into different work that I do. And there are parts of it that is okay for public consumption. Right? And there are parts that even if I start getting a little bit close to sharing a bit about it, it becomes too much. So, how do you think about understanding your own trauma and what parts get leveraged to move the work forward and what parts you keep for yourself?

Kandis Draw: When you're speaking about trauma and advocacy with ovarian cancer, I don't experience that anymore. I now see it as a cause I'm fighting for. Now, when I first became a member of the National Ovarian Cancer Coalition, that was a way of helping me grieve. I can admit to that, because I was in the middle of, it was just getting too overwhelming and I wanted to know more, but didn't know how to go about doing it. So, I just started reaching out to any ovarian cancer think in Illinois I could find. So, that was part of helping me grieve, but it also helped me in the long run. It started training me how to talk. It started training me on what to do, what to say. Getting with other people who had survived, and then saying that we could do cancer advocacy on the national level, and seeing it was one of those stepping stones.

Kandis Draw: Going to Washington DC and meeting with state leaders, it's more for me for the cause now. I don't relieve any traumatic events. During the run-walk seasons here in Chicago and ovarian cancer, and we have a whole run-walk season, and that's when the emotions run deep for me. You see the survivors. You see those who have had reoccurrences and they beat it again. And then, there's a whole remembrance section for people you have lost. That's when it starts to get raw for me. Or when we have our annual corporate tree decorating, that's when my emotions become raw again, for me, which is normal. It's just part of the missing them.

But I would say that the traumatic part of it for me, I've worked through, but it took me some years to get there. This was not a one or two, or three year, because I was trying to get to the point where I could communicate and I wasn't about to cry, if that makes sense.

Jodi-Ann Burey: Oh yeah.

Kandis Draw: And then, because I knew I wasn't there yet, I would say, "So, maybe someone else should talk because I don't think that they're going to listen to me because I'm a B." So, it took some time. It took some time to get there.

And then one of the state and Senate leader, if they have signed a bill, you thank them for their leadership. You thank them for their support and their commitment. And that's something that really, once you give them that, "I'm so appreciative for you for backing this bill. I am grateful to you for your commitment to cancer. And because of you supporting this bill, more things will become available, more money will become available to treat it." That brings a lot of positive reinforcement. And then you get further.

Jodi-Ann Burey: Yeah. And that's the same thing, like what you were talking about as a caregiver, wanting to hear that positive reinforcement, so you can go further too.

Kandis Draw: Yes.

Jodi-Ann Burey: So, I think this like cycle of you know someone is battling, you're in the battle, and you still need that acknowledgement, right? Be it someone who is battling cancer or someone who can really open the doors for more research, and more support and more resources. People still need to be acknowledged and reinforced that we have to keep doing this together.

Kandis Draw: Absolutely. And black and brown communities, as we know, they're affected disproportionately more. If we even talk about breast cancer, black women have a 40% higher breast cancer death rate than white women. Or talking about how vitally important it is for black and brown communities to have a face. And because I wasn't seeing a lot of black advocates at the national level, made me want to try to become one of them. So, that's why I did what I did.

Jodi-Ann Burey: Now, I'm happy to see you in the work. I read Audre Lorde's Cancer Journals.

Kandis Draw: Really?

Jodi-Ann Burey: Girl, please send me your address, and I will send this book to you.

Kandis Draw: Yes, please.

Jodi-Ann Burey: I promise you. Yeah, email me your address and I'll send this book to you. Because I think everyone should read the Cancer Journals from Audre Lorde. But there's this one part in it where after she got a mastectomy, they offered her to join one of the support groups, and she's like, "Are there any fat, black lesbians in those groups?"

Kandis Draw: Oh my God. Well, that's a valid question. That's a valid question.

Jodi-Ann Burey: Even when I'm struggling with illness or something, I still need to be seen and see other people like me in that space. That is so important. I just have so much respect and admiration for you for braving into these white worlds and bringing us along.

Kandis Draw: Listen, there needs to be some presence somewhere, because you don't see enough of it. Enough of us are not on these boards. We're just not. We're not represented. And so, I figured if that was the best thing that I can do, and I just felt like, "Okay, it's time to take things to another level." So, that's why I decided to do it.

Jodi-Ann Burey: And I appreciate your work. I'm just writing down your address here. I'm going to send you this book.

Kandis Draw: I'm so excited to read that book, you just don't understand.

Jodi-Ann Burey: Though, I'm really excited to share that with you. I didn't know about it. Talk about not knowing resources, right? I did not know that this book existed until a couple months ago.

Kandis Draw: Really?

Jodi-Ann Burey: Yeah. I've read through it. I mean, it's an old book. I've read through it several, several times, because she's mixing her politics and her perspectives. There's her whole essay about, people quote her all the time, Your Silence Will Not Protect You, right?

Kandis Draw: Yes.

Jodi-Ann Burey: That work is in the Cancer Journals. And she also talks about her own experience. And she has a lot of essays around her cancer journey and the options that she decided to take, and things that she survived, and things that metastasized. And so, I think reading the narratives of other people who've gone through it is so important because we need that representation. And it's not easy to "pioneering" in these spaces. You're pioneering in these spaces in a lot of ways, right? That work itself is not easy. I'm sure.

Kandis Draw: No, it's not.

Jodi-Ann Burey: So, I just respect you so much for navigating that for all of us.

Kandis Draw: Thank you.

Jodi-Ann Burey: And I feel like I need to go get my ovaries checked just to respect you. To respect Kandis, I'm going to get my ovaries checked. She's out here doing the work, and I'm sitting here on this damn referral, and not wanting to go get my ultra-sound. That's ridiculous.

Kandis Draw: No. Wait a minute. I've done that too, where I've looked at a paper like, "Okay, what are we going to do with this?"

Jodi-Ann Burey: What are we going to do with this? Is there anything more that you'd like share with our listeners? Because I think folks who might be drawn to this are people who are caregiving right now, right? Or folks who are supporting people, who are caregiving or navigating this, or even people like yourself, who are health advocates and are out there doing the work for us. Is there anything more that you would like to share with folks?

Kandis Draw: You need to, as a person who is either, if you're battling an illness it's important to talk to people, talk to someone. Caregivers, listen, take care of yourself and don't feel guilty about that. You're going to have feelings of guilt. Let those feelings pass. Give yourself a break. Even if it's reading a book, doing something, for you to carve out some hours throughout the day. If you have it available, solicit some help from other family members. Sleep when you can. Shower when you can. Whatever it is that you like to do, carve out some time and don't feel bad about it.

Jodi-Ann Burey: Yeah.

Kandis Draw: Are you doing things right? Yes, you are. Just because you feel like you're at the end of your rope, it does not make you a horrible person. Okay? The stress of caregiving is a real thing. And sometimes know that you won't always see the thankfulness from your loved one right away. This is a long process. And just know you're doing the best that you can.

Kandis Draw: I'm an associate member for Gilda's Club. If you have a Gilda's Club in your area, and if you're battling cancer, please know that that's a free cancer support community. Please know that it is a free resource and that you can sign up, and you can take advantage, which because of COVID right now, everything is virtual. Know that along with support groups and other activities that are on those sites, you have options. Therapeutic cancer support is things that you can get involved in. Caregiver support groups that are online, that I've been asked to speak in, actually. I can't believe I'm talking about it now. I'm talking about a level I'd never thought I'd be talking about it. Oh my goodness.

I encourage anyone who is listening to reach out to whatever things your city or state has available cancer support-wise, and then take advantage of the resources that are given. Do not be afraid to reach out and to speak up. Give yourself some grace, because it's a difficult time. Give yourself some grace.

Jodi-Ann Burey: Ain't that the truth? Ain't that the truth?

Kandis Draw: Absolutely.

Jodi-Ann Burey: Black Cancer is created, edited and produced by me, Jodi-Ann Burey. Thank you so much, Kandis, for sharing your story with us. To make sure the other Black Cancer stories become center to how we talk about cancer, like, subscribe, absolutely leave a review on Apple Podcasts. Check out our website at blackcancer.co and on Instagram @_black_cancer. Trauma comes with endless wisdom for ourselves and those all around us tell someone you know about Black Cancer.