Kawanna
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Kawanna was experiencing discomfort in her breasts when she discovered a mass in her underarm at age 37. She shared these concerns with a coworker, who encouraged her to make an appointment, and Kawanna followed up with her primary care physician accordingly. Coordination of care proved difficult, and it took several months between this initial appointment and when she was finally sent for her first mammogram, ultrasound, and biopsy. Kawanna was not too concerned at first, assuming she just had “lumpy breasts” like her mother. Weeks later, Kawanna finally received news she never expected to hear – there was a tumor in her breast, and it was malignant. Kawanna has no known family history of cancer, so there was “no expectation” for the results to come back as they did. A second opinion confirmed Stage 3 invasive ductal carcinoma.
Before Kawanna started treatment she needed to settle her children – including a son just leaving for college – into the new school year. Kawanna’s experience once she began care was “like an acceletrain” and “everything happened very quickly.” Kawanna’s breast surgeon helped her put together a team, and treatment included chemotherapy, biological therapy, a unilateral mastectomy, radiation, and just recently reconstruction. Though Kawanna doesn’t remember every detail, she “can’t forget” how treatment made her feel – “it was just scary” and was a hard “introduction into cancer.” Kawanna had no idea ahead of time what impact her treatment would have on her: it makes you “look like you have been through hell, and it shows, and you can’t hide that.” Kawanna experienced fatigue and chemotherapy in particular had an “adverse effect” on her heart which, coupled with her already existing blood pressure issues, threw a “wrench in the plans” she had for her life. Letting go of any timelines and accepting “when it’s over, it’s over” helped Kawanna get through this phase.
Kawanna is an “optimistic person” and though cancer took its toll, was particularly worried about her family having to go through “the unknown” with her. This included her husband and “the impact it would have on him” in addition to the trauma her children might experience worrying “about this every single day.” Breaking the news of her cancer to family “was hard.” Kawanna is a mother and plays an active role in managing the household and parenting. This time in her life was particularly difficult because she went from being “a very active participant” in her own life to “being a spectator.” Kawanna’s husband took “a step forward” to help, because she felt “so emotionally exhausted” and “did not want to cheat” her children during a time when she had to withdraw and rest. The reversal of roles between Kawanna and her husband was a supportive dynamic which helped her through the most difficult times.
Kawanna continued her career as an administrator “the entire time” thanks to a very accommodating workplace. She notes that mentally she may not have been completely ready to return to work after treatment but having a place to go every day helped her regain a sense of normalcy. Kawanna was “bounced around” in the health care system quite a bit but feels lucky to have received physical therapy which “was priceless” in addressing pain. The help Kawanna received from diverse other women in support groups who “just embraced and encouraged” her was wonderful, and Kawanna now “can’t do without them.” Kawanna has now spoken about her experiences as a young cancer survivor several times, which has been both rewarding and quite therapeutic for her. Participating in these events and revealing herself and her story on social media has been important for letting others know “I understand.” Ultimately Kawanna hopes that those “who need to hear” her story and experiences “really hear it” and wants others in a similar position “to be patient with yourself” and remember that “time heals. It really does.”
Kawanna regrets the asymmetry she was left with after having a mastectomy in one breast, and a lumpectomy in the other.
Kawanna regrets the asymmetry she was left with after having a mastectomy in one breast, and a lumpectomy in the other.
So, they did an excision along with the unilateral mastectomy. That's probably one of the things that I wish that I had done differently for many reasons. After the surgery, everything was just, the symmetry was all off, and, you know, there's ways to kind of fix that so that no one else knows, but I have to see me. And that made me uneasy every day. And every day of trying to figure out, okay. What can I wear to disguise the disproportion? Or, you know, I didn't think that it would bother me, but it did. It just, besides it just looking weird, it was uncomfortable.
Kawanna struggles to feel at peace with her choice to remove just one breast.
Kawanna struggles to feel at peace with her choice to remove just one breast.
I felt rushed into that decision, believe it or not, because after the chemo, and even though I had that February month, I think that's the point where I felt like I had enough and I just was tired. And I kind of felt pushed into this decision, and I-, and I grappled with it a lot. But then I got to a point where I was like, it's too late.
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It was probably just, not even two weeks, before the surgery, and I told the surgeon, I'm like, "Mm, why don't we just do both"? She's like, "Well, you know, it's not." She explained to me the statistics of, you know, it doesn't jump from one breast to the next. And, you know, you don't want to have to do that if you don't really have to. And, you know, I was kind of okay with her opinion and her explanation. But then I just felt like it was, I should have changed my mind. But then, again, I don't know what I know now, and I've actually experienced it.
Kawanna regrets the asymmetry she was left with after having a mastectomy in one breast, and a lumpectomy in the other.
Kawanna regrets the asymmetry she was left with after having a mastectomy in one breast, and a lumpectomy in the other.
So, they did an excision along with the unilateral mastectomy. That's probably one of the things that I wish that I had done differently for many reasons. After the surgery, everything was just, the symmetry was all off, and, you know, there's ways to kind of fix that so that no one else knows, but I have to see me. And that made me uneasy every day. And every day of trying to figure out, okay. What can I wear to disguise the disproportion? Or, you know, I didn't think that it would bother me, but it did. It just, besides it just looking weird, it was uncomfortable.
For Kawanna, rebuilding physical intimacy required patience and persistence.
For Kawanna, rebuilding physical intimacy required patience and persistence.
We just ran into a lot of instances where it was just, there was, the pleasure aspect of it was gone.
For you.
For me which, in turn, he can't enjoy it because it's just like he felt like he was hurting me or just creating more pain or whatever. And, so it, and that's even been a struggle now. Energy has a lot to do with that because even though I don't have the same fatigue from going through the actual treatments, that has now transferred into I'm gone all day. And yes, I worked before this, and it was the same amount of hours, but my body handles it differently.
Yeah.
So, we’re trying to rediscover that. It was very painful for a while, so I'd like to think it was almost like being a virgin again. So, that was hard to get past. So, it's infrequent, but we're working on it.
Kawanna's dog and cat were gentle with her during her illness.
Kawanna's dog and cat were gentle with her during her illness.
They know what relaxing is. That's for sure. They didn't need nothing. They didn't need anything from me, just for me to be there. And believe it or not, they were there more so. And it's weird. I think they knew because our dog is very playful. He's young. He's rambunctious. You know, he has the energy of the kids. But he's very gentle with me. And he always was. And my cat, she's not a very affectionate cat at all. She doesn't want to, she really would rather not be bothered, but she stayed very close. She stayed very close. So, I don't know how animals deal with, with sickness and how they interpret that or what signals, but I, I did feel that closeness. Like I said, this is a big dog. He doesn't even know how big he is. But he was gentle with me. It's almost like he knew that he had to.
Kawanna's husband wanted to do everything for her himself.
Kawanna's husband wanted to do everything for her himself.
And he did great. He did great at first, but one of the things that I knew would happen, happened. But I, I couldn't stop it even if I wanted to. I was afraid of him getting burned out because he didn't want me to do anything, and he wanted to do everything. And he didn't want other people to help him do it. And he wanted to show that he can, he can do it. He can take care of it. And I, I think it just got, it was too much. It was too much. So, because all of those things were kind of like filling space for him, and it just didn't help the situation, because he wasn't dealing with how it was impacting him.
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And so, he took time off from work. And it worked out at first of course because, not that I didn't have other people to kind of step in and do that, but he-, he couldn't imagine it not being him. And I mean there was plenty of ways to give him a break, but it just, I had to let him do that because there's nothing else that, I had to understand that. Like, he's lost. He can't do anything else. He can't take away any of the pain. And he watched me. He watched me be that smiling person at treatments and in amazement of other people. And, you know, if I did decide to do some type of family function; he watched me pretend to be comfortable. But at the end of the day, he's the one who has to deal with seeing the ugly side of it all and, you know. When I'm not at my best and when I can barely, you know, all I wanted to do was from the bed to the bathroom, and he's the one who had to, besides encouraging himself, he had to keep me going. And I thought that was hard for him.
Yeah.
That was hard for him. And it was hard for me, too, to watch it happen.
Kawanna is still trying to figure out how she is changing as a person.
Kawanna is still trying to figure out how she is changing as a person.
Even when I think of my own growth and think that, all right, perhaps I'm changing as a person because of what I've gone through with this diagnosis. Or, you know, maybe it's just I'm scared, and I'm just like, all right, maybe I need to do something that I was always meant to do. So, that's hard for me to think that, in order for me to do that, I have to but I know that they would support me no matter where and what I did.
What do you think you might have always been meant to do?
Oh! I'm still trying to figure it out. I really am. I'm still trying to figure it out.
Kawanna discovered several useful support groups, including one that also has sessions for her kids.
Kawanna discovered several useful support groups, including one that also has sessions for her kids.
And then I found another support group that also had sessions for kids. So, I thought that it would kind of-, I didn't fully understand exactly how the setting would be, but how it ends, turns out is that the kids are down in their own session having-, they have different, they have art, music, different modes of therapy to kind of process their feelings. And I am in my group with-, with other people in different stages of the cancer journey. And no, I just…
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We 're completely all different types of women. But I they're-, I can't do without them.
And that's ongoing for you and your kids?
Yeah. They've become a part of my network. And I also have another group, which is less frequent. This group that I go to is every week, and then I go to another group that's like every—well, once a month, and I think as the sessions move on, it's going to be every two weeks. So, I don't know. I just feel committed to them.
Kawanna wonders if her cancer would have been caught earlier if she had been even more persistent at the beginning.
Kawanna wonders if her cancer would have been caught earlier if she had been even more persistent at the beginning.
So, I made the doctor's appointment. I went. And so, my doctor was more concerned with my high blood pressure [LAUGHS], which is what she had been treating me for consistently. And at the end of the exam, I said, "Um, do you do, um, physicals?" That's how I put it because I associated physicals with where, you know, it would be a whole-body check. So, I didn't specifically say, "Oh, can you check my breasts?" I didn't say that explicitly. So, she didn't know how much it was kind of bothering me. So she, but she did tell me, she's like, "Well, you know, I didn't allot enough time, so let me call and make another appointment, and we'll do it then." So, I did that and I had a later appointment, and my kids were in after school, and father's at work, and it was just my routine. That was my routine - picking them up and doing all that. And I was waiting in her office for almost an hour. And I'm like, I have to leave now because you know, the school was going to call me and say, listen, no one came to pick up the kids. And I had to make a decision and I left. But a week later, I explained to her why I left and everything. I told her, "Listen, I left, but this thing under my arm is really bothering me, and I need you to take a look at it."
You called on the phone?
Yes. And so she didn't have any openings, like, in the near future, enough for me. So, she referred me to one of her co-workers, and so I made the appointment with that physician. And I went in there, and the, it's, when you think about it afterwards and you can remember the expression on some people's faces, it's like, okay. They, you know, for me, this is the first time but for them, they've seen this kind of play out in many different ways for many different people. So, he immediately said, "Alright. Let's just do the mammogram."
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So, just was weird that I'm too patient. That's what I fight with myself over that I'm too accommodating. I'm too considerate of other circumstances. And I found every reason why, "Mm-hmm. Alright. I could just wait. I could just wait." I don't know that it would have made a difference, honestly. I don't know that. But it's something that I thought about early on.
Because it delayed your diagnosis by a couple of weeks?
Yeah, yeah. Even up to the first primary appointment.
Right.
I think, "Wow." I could have, this is months that have gone by at this point. It's months. It was January to July.
Kawanna wants clinicians to know how much it matters when they pay attention to patients’ lives, not just their disease.
Kawanna wants clinicians to know how much it matters when they pay attention to patients’ lives, not just their disease.
So, for the health professionals I didn't think about this one. I know what it is, the gist of what I want to say. I think sometimes they do a well enough job of getting a better understanding of their patients outside of just that particular treatment. But I think it's important to know what other factors play a part. And I don't think that that's always, I think that's how you understand what that person's need is. Actually, doing radiation, the nurse is actually the one who-, who mentioned to me a program, because my concern at that point was, all right, we're running on one income. Between the gas and the car and having to, the alternate, all of these things play a part. And these are things that are also weighing on me. And it might seem small, but these are all things that-, that play a part. The kids finish school at a certain - oh, and on Wednesdays, at a certain time, and, you know, so, I can't have treatments those days. But the doctor's not in this day and this day. All of these things weigh on the patient. And someone told me about a car service program through American Cancer Society. And I had no idea how much a relief that was going to be. They came, and they picked me up every day and dropped me off back home. And then that meant—because there were some times where I-, you know, [LOCATION], there is no parking, especially where the major hospitals are. So, there was days where my husband and I were paying for parking. That's $20, $25 sometimes, and that's just for a few hours, and even $15 for, because radiation, it goes very quickly. But that began to take, that adds up. I had to do radiation for six weeks every day. So having the car service, and there was days where we could leave the car on the right side in the event that we couldn't find parking, and he would be able to come with me. And it was just such a relief. But you don't know these things unless you're really invested in what's affecting the mood of your patient.
For Kawanna and her family, radiation treatments posed logistical and financial difficulties.
For Kawanna and her family, radiation treatments posed logistical and financial difficulties.
My concern at that point was, all right, we're running on one income. Between the gas and the car and having to, the alternate, like, all of these things play a part. And these are things that are also weighing on me. And it might seem small, but these are all things that-, that play a part. The kids finish school at a certain, oh, and on Wednesdays, at a certain time, and, you know, so, I can't have treatments those days. But the doctor's not in this day and this day. All of these things weigh on the patient.
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There were some times where I-, you know, [LOCATION], there is no parking, especially where the major hospitals are. So, there was days where my husband and I were paying for parking. That's $20, $25 sometimes, and that's just for a few hours, and even $15 for, because radiation, it goes very quickly.
Kawanna worked throughout her illness to stay afloat financially.
Kawanna worked throughout her illness to stay afloat financially.
I was like, well, I need insurance. So I've got to keep working. Even if it's four hours, I've got to keep working, so I could pay for the insurance. I didn't know that I had other options. It pretty much was vaguely, paid family leave, 12 weeks. But then what? Because that time just goes by, and at this point, I was in the midst of the first most draining chemo. But I would just have to push myself for at least four hours. And I didn't know the HR person well enough to advocate for myself on that end. I need another choice. I wanted something that was going to say, “OK, you, you can stop.” Or I wanted someone from the beginning, probably, to advise me, “Listen, it's probably in your better interests, because things are going to get harder, that you might want to consider ABC.” But I didn't know any better, so I just pushed myself as much and as far as I possibly could.