Katrina
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With no family history of cancer, Katrina thought that, “never in 100 years” would she be diagnosed with breast cancer. Looking back, she now recognizes “all the signs.” Months before her diagnosis, her dog Max, was always clinging to her. Then abiding God’s call to, “Look in the mirror,” she saw a “big, green, dark, vein” from under her arm to her nipple. After a mammogram, ultrasound and biopsy, she was diagnosed with triple negative Stage 3 breast cancer.
Treatment started with the chemotherapy cocktail, ACT (Adriamycin, Cytoxin and Taxol)—which Katrina describes as the “red devil.” She prayed over each treatment and took medication for nausea. As a result of chemotherapy, Katrina experienced neuropathy (nerve damage that results in numbness, weakness, and tingling), which interfered with her ability work as a nurse. Following chemotherapy, Katrina had a double mastectomy and 28 radiation treatments. Unfortunately, her post-treatment PET scan showed that the cancer had spread to her inter-mammary glands and several lymph nodes. Against her doctor’s advice, she then switched to a cancer center using a holistic approach that better aligned with her beliefs. In addition to Taxotere and Xeloda, she also received physical therapy, speech therapy for her “chemo brain,” and massage. Nonetheless, the cancer continued to spread. Katrina is now on a second clinical trial.
Katrina’s side effects eventually got so bad that she needed to leave her job as a nurse and by so doing she lost her insurance and had to go on Medicaid. Knowing the healthcare world, she worried that she would not get good care. Fortunately, she found coverage through a special program for breast and cervical cancer patients. Ever the nurse, Katrina has taken to speaking up for those Medicaid patients who she thinks are being made to wait too long in the waiting room.
Katrina gets support from her pastor and prayers of friends, daily phone conversations with her sister, and gets a great deal of joy from video-visiting with her “grandbaby.” She took part briefly in a “happy” breast cancer support group, but as the only one with metastatic breast cancer felt her issues like “funeral stuff,” were not addressed. Max, her beloved dog, gets Katrina her out of bed each day, when most days she wouldn’t. Most of all Katrina credits her deep faith, “I'm still here, still fighting, with the grace of God.”
Katrina noticed an enlarged vein she hadn’t seen before.
Katrina noticed an enlarged vein she hadn’t seen before.
I saw it on the side right here. And it was a big, green, dark, the vein was about this big of my finger. And it was right from up under my arm, down to my side, to my nipple. And I look, I say, that's mighty green. It was like a, a dark, it's a dark green then the green vein that you have in your, in your, you know, your breast. And it was running to my, to my nipple. And I said, “Oh, my god!” And I followed it up. And I followed it up under my axillary on my armpit. And it felt about like this big. So, I said, well, maybe this is an abscess.
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So, when I made, when I made my gynecology appointment, I made it as soon as possible. And he said, “oh, Mrs. [NAME], I think it's an abscess. But we're going to go on and do a mammogram, going to go on and do an ultrasound. So, I went to the surgeon So he said, “Mrs. [NAME], I think it's an abscess but, you know, we're going to go on, and do this biopsy.” And he did it. He pulled like two samples. And he put, he said, “Well,” And in my head, I'm like, if this was an abscess, it would have burst. It would have smelled. I didn't say anything to him. But in my mind, I was thinking that. I said, there's something up with this. There’s not an abscess. In my mind, I didn't say nothing to him. But I said, if this was an abscess, it would have smelled. It would have. It would have. So, he called me back. It was like a day before my, it was, it was during my daughter's birthday, the day before. Because her birthday was on a Saturday. He called me late. And he said, “Hi, this Dr. [NAME] and I got some bad news for you." And like me and him joke. I love to joke and play. When I really be, you know, really nervous and sad. But I joke it off, and probably, he said, “It’s breast cancer. And it's triple negative breast cancer.”
Katrina told her doctor to listen more carefully and hear what really matters to her.
Katrina told her doctor to listen more carefully and hear what really matters to her.
"Well," I said, "One thing I hope," I said, "I hope you never be in my shoes." I said that you need to start listening to your patients. And I pray you never be in my shoes. And I looked him right in his eye, and I told him, just like that
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In my, in my mind, I'm like, I would have been like, "[NAME], I should have listened to you", you know? But when a doctor's so arrogant in himself, they're not going to say sorry. They're not to say, "Well, I was," just any kind of something. You don't even have to say you're sorry. Just say, and I don't know, just any nice way of saying about the scan. Just say, “You was right about this scan.” Just say, “You was right.” Because I told him. Just say that. You're not, you're not saying, like I was wrong. You're saying, “You, [NAME], you was right.” That's what a patient want to hear that you're hearing, that okay, “You was right.” I would have been happy with that.
Katrina worries that being on Medicaid meant receiving lower quality care.
Katrina worries that being on Medicaid meant receiving lower quality care.
I don't know. I don't know if they, I don't know if they do them different or not. You know, it just, you just, I just sometimes you hear, “Ooh, they on Medicaid,” you know? I don't know what that means. Is it supposed to be a different type of care, you know?
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So, I just, even if you visit hospital, you know, you can just overhear stuff, and be like, “Oh, that, yeah, they on Medicaid.” And just, does it matter? Do Blue Cross matters from them? Or do they go first? Do they put Medicaid last?” I just be, really wanting to know. I just really want to ask. I just, it makes me upset. Because I have been on both sides and it don't feel good on Medicaid. And sometimes I could, I do can tell a difference. Like, I might be last. Like, more people have been, like if I been there sitting, and I'll go ask, you know, “When is my name being called? I was here about 30 minutes ago.” And this person, they tell me something or whatever. But I just be, I don't know.
Katrina’s providers helped her prioritize her “mind, body, and soul” throughout treatment.
Katrina’s providers helped her prioritize her “mind, body, and soul” throughout treatment.
I had to, you know, keep moving, keep praying, keep moving. And up there they had, at the cancer center, they had the sign, they meet, everything. They meet mind, body, and soul. So, they met, they gave massages. So, everything that was, that you could need or want, it was there. Physical therapy, when you're, my joints and stuff was hurting. I had physical therapy, speech therapy for my chemo brain, they, and I sometimes with my phone lost, the apps would help with your memory each day. She'd set up days that I do these activities. And they helps with like remembering things, and every day it was set up. And now I had a reminder would come on. It was just, it was everything. They helped with that. So, I would say that really helped my chemo brain. Getting a massage, you know.
Katrina's intuition told her something was not right.
Katrina's intuition told her something was not right.
I had called my doctor and I said, "You know, I feel like it's something happening right here in my chest, in the middle of my chest." I say, "It feel like it's some cancer right there, and I, I just don't feel right." We got the PET scan, sure enough, it was in my intermammary glands on my right side, all down, right up in here and some in my sub-clavicle. It was in the lymph, it was in the lymph nodes right here, and in my intermammary glands.
Katrina wants to connect with others living with metastatic disease and discuss “for real” issues.
Katrina wants to connect with others living with metastatic disease and discuss “for real” issues.
I find myself around a lot of survivors. Only a few that's like, that's in the chemo doing it. I just, they make me so happy because they're survivors. I wish I could, you know, be around some that's living with it, like how do you get out the bed? My question is how you get yourself out of the bed? How are you and your family communicating when you're so tired? Or have you talked to them about if you died, when, I don’t know! I just want to ask you some for real questions. And I'm scared because I want to know some for real answers. I don't want to beat around the bush because I'm way past beating around the bush. I've been dealing with this coming up five years in March.
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Like, if you're single, intimate stuff, like how do you feel in a lot of things. Like, I had a friend, it's not like a boyfriend, but I feel like they think you're going to die, so they don't want to be close to you knowing that you're going to die. So, you be in the friend zone, you know? I want to know how does that feel, is, you know. Not somebody that's married, because they going to be there for each other. If somebody is single, these is my questions. Somebody that's single, children going off to college, you might be in the house by yourself, you know? How, how would you do? You just, just take life has, how it gives you? Just take it and be happy for what you have? I don't know. I don’t, I don't know. I just want to know. It’s no, and when I get in the group, it's just, it's happy. And I'm not wanting to be a sad thing. I just want to know real stuff.
Katrina was scared about what kind of treatment she would get once on Medicaid.
Katrina was scared about what kind of treatment she would get once on Medicaid.
And my insurance, I was at my job. I had to go on leave of absence. And at that time, my insurance was failing because I was on a leave. I couldn't go back to work so I had to get on Medicaid. And they don't take Medicaid of [LOCATION]. So I had to get Medicaid of [LOCATION]. And then I felt bad about that. And I said wait a minute, I didn't work too many years in nursing. And I'll just worry about how they was going to do Medicaid patients. You know, I didn’t want to, if I would reach this point, they was going to like kill me off or whatever. I was just scared of that. You don't know how they're going to do you on Medicaid. You just don't know. So that was, I was scared about that and just panicking
Katrina eventually had to stop working, thought her employer supported her as long as possible.
Katrina eventually had to stop working, thought her employer supported her as long as possible.
But they worked with me with my hours. They would cover for me or I'd split them up. I worked Monday, Tuesday, Wednesday, like one on, one off, you know, like, that so I wouldn't get too tired. So, they worked with me a long time. Because, you know, I've dealing with this a long time. So, yeah, they worked with me all kinds of ways. Because I had to fly to [LOCATION] and everything, and see that took a while, you know, to do the treatment, and then come back. I would come back on a Friday. And then I would rest Saturday and Sunday, come back Monday, and like that. So, it worked like that until I just got, the neuropathy got really bad. And I'd found myself as a nurse forgetting. You know, before, I'm, I'm not going to harm anybody. I'm going to stop, even if my resources have to pay. Because I don't want to hurt anybody. You know, we're there to, for safety and caring of our patients. So, I asked them, could I take a leave or you know, I took a, like a short leave, like a 30 day leave. Because I just said, maybe I'm just overwhelmed, too much working. Because I was getting that Taxotere and it was just wearing me down mentally, physically. I was just so tired.
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And at the end of the day, I say, "No, I can't." I don't like to ask for help. I want to be my own. I'm getting my own check. I don't want nobody to carry my weight. [SIGHS] So I just, I just had to take the leave. I just didn't want no patients to suffer. I didn't want my co-workers to suffer for my lack of not being a team player to help. Because they can't help me and do their work too.
When Katrina feels overwhelmed, she hands herself over to God.
When Katrina feels overwhelmed, she hands herself over to God.
When you get so overwhelmed with stuff, you have to just say, "God, I surrender this to you. I can't think anymore. I can't cry no more, I don't know anything else to do, but to give it to you." And he'll hear you. He'll hear your cry. He'll hear you. All you got to do is just say, "Jesus, help me." If you're so overwhelmed, just say, "Jesus, help me." He knows what it is. He knows all what's going on. Just say, "Help me, Lord." And that's, I find myself doing that.
Katrina felt at ease with her surgeon when she saw he had prayer posted in his exam room.
Katrina felt at ease with her surgeon when she saw he had prayer posted in his exam room.
So, I went to the surgeon, and he was so nice. He had a prayer in his room, a doctor's prayer. When I saw the doctor's prayer in his room, I was, like, at ease. I was like, "Yes, Lord. I, I feel comfortable." I feel like I'm in good hands, you know? Because we know God is the doctor. He's the doctor, but when I saw the doctor's prayer and I read it, I felt so at ease. I couldn't believe how I just felt. I just laid my, not going to say my body because that might sound crazy, but I was, I laid, I let him do what he needed to do. And I still prayed to God that he was going to take care of me, you know, in the operating room. Whatever he'd find, whatever he'd do, he was going to be able to, well. God was going to help him to be the handle it.
Debbie describes how she thinks patients want clinicians to communicate.
Debbie describes how she thinks patients want clinicians to communicate.
And it always, twice a year, the fall and the spring. So, I just went to a fall one and it was really nice. We had a fishing pond and we get to, got to fish. And we got to do crafts and art. And they did our makeup and did our nails. And they did people hair. And then we had a little like dance, a little dance. Dinner, they fed us breakfast and dinner and lunch for, like I said, it was a three day, two night, three day. And it just, this has been, this is my second time going there. And you get to meet other people. And you get to discuss, you know, how you're doing, what you want to talk about, what emotional help or emotional help, anything you want to discuss. And they uplift you.
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But they designated always around mountain, beautiful scenery, always around some beautiful scenery, like water, mountains, falls. It's just, it's always somewhere pretty. You get to relax if you don't want to, you know, go or participate. So, I was just always relaxing.
Katrina wishes she could connect with others living with metastatic disease.
Katrina wishes she could connect with others living with metastatic disease.
I find myself around a lot of survivors. Only a few that's like, that's in the chemo doing it. I just, they make me so happy because they're survivors. I wish I could, you know, be around some that's living with it, like how do you get out the bed? My question is how you get yourself out of the bed? How are you and your family communicating when you're so tired? Or have you talked to them about if you died, when, I don’t know! I just want to ask you some for real questions. And I'm scared because I want to know some for real answers. I don't want to beat around the bush because I'm way past beating around the bush. I've been dealing with this coming up five years in March.
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Like, if you're single, intimate stuff, like how do you feel in a lot of things. Like, I had a friend, it's not like a boyfriend, but I feel like they think you're going to die, so they don't want to be close to you knowing that you're going to die. So, you be in the friend zone, you know? I want to know how does that feel, is, you know. Not somebody that's married, because they going to be there for each other. If somebody is single, these is my questions. Somebody that's single, children going off to college, you might be in the house by yourself, you know? How, how would you do? You just, just take life has, how it gives you? Just take it and be happy for what you have? I don't know. I don’t, I don't know. I just want to know. It’s no, and when I get in the group, it's just, it's happy. And I'm not wanting to be a sad thing. I just want to know real stuff.
Katrina advocates in hospital waiting rooms, speaking up for others.
Katrina advocates in hospital waiting rooms, speaking up for others.
Advocacy is when you speak up and take, not take charge, but you want to find a safety for everybody, you know? And this, even with quality of care, if you see something's not right, and you know, you want to be like, even then, out in society or whatever, and you see something not right, you'll be like he was here first. Even though I'm here, he'd been sitting here. And a lot of people don't do that. They just stay in line and knowing that, and I've seen it done to some elderly. Some of them will get snappy, but most of them be like, “Go on.” I said, “No, you go on. You've been here. I can wait. My legs work.” Even though they hurt, you go on. They, you know, their mistake was, we need to start being respectful. That's another thing. This society is not respectful, even with all what's going on. It's just, I don't know. A lot of respect is going out the door. And caring for peoples went way out the door. And just being right for each other. I mean, treat each other right, just treating people right.
Katrina describes a camp for people with breast cancer and their caregivers.
Katrina describes a camp for people with breast cancer and their caregivers.
And it always, twice a year, the fall and the spring. So, I just went to a fall one and it was really nice. We had a fishing pond and we get to, got to fish. And we got to do crafts and art. And they did our makeup and did our nails. And they did people hair. And then we had a little like dance, a little dance. Dinner, they fed us breakfast and dinner and lunch for, like I said, it was a three day, two night, three day. And it just, this has been, this is my second time going there. And you get to meet other people. And you get to discuss, you know, how you're doing, what you want to talk about, what emotional help or emotional help, anything you want to discuss. And they uplift you.
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But they designated always around mountain, beautiful scenery, always around some beautiful scenery, like water, mountains, falls. It's just, it's always somewhere pretty. You get to relax if you don't want to, you know, go or participate. So, I was just always relaxing.