Denise
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Denise got “the call” about four years ago at work just after her annual mammogram. When she heard, “I'm sorry,” Denise knew “it's not a good thing.” She asked her husband to accompany her to the clinic for the ultrasound that confirmed cancer in her right breast; then came the surgeon. It was a scary and “complete merry go round ride.” They did not know what type of cancer she had or how far it had progressed. Given its size, the surgeon recommended removing the breast. While many insurance plans pay for a double mastectomy, Denise’s says her “insurance dictated her treatment,” only covering a double mastectomy or oophorectomy with a genetic risk and Denise’s test came back as a question mark. Learn more about Denise’s experience with genetic testing and cancer risk that runs in families here. So, on the day of her diagnosis, a single mastectomy was scheduled for two weeks later. Financially and psychologically, Denise felt the need “to get back to work and keep going,” She took just one week off for surgery.
Denise’s breast cancer was staged at 2B. She needed eight rounds of chemotherapy over four months. Chemotherapy while still working was tough. She lost her hair and felt wiped out. By comparison, radiation was like a “walk in the park.” She takes tamoxifen to tamp down her “girl hormones,” wishing insurance had paid for an oophorectomy. The asymmetry, along with hair loss, was a hit to her femininity. A prosthetic has helped her self-image and she delights in how elegant she looked at her son’s wedding. While placing the chemotherapy port they discovered a schwannoma (benign tumor) on the left side of her chest. This melon-sized tumor pushed on her lung and cut off blood flow in her arm. After chemo, Denise was referred to a nationally recognized clinic to remove the schwannoma. This clinic also focused on her spirituality—a noted difference from the quality of care she received at the rural cancer clinics. Denise notes cancer might well have saved her life.
Denise is grateful for her husband’s health plan, but she had various procedures at different rural clinics and things fell through the cracks. Denise had to become her own advocate, often nagging one clinic to fax her x-rays to another one. Denise rues that healthcare is run like a big business, remarking how little personal connection she encountered among the healthcare workers. Then a a wonderful nurse navigator came on the scene and moved information where it needed to be and straightened out complicated billing statements. She was happy to relinquish her “go-between” roll. Denise is also frustrated that removing the schwannoma left a scar tissue on her left breast. Yet, her insurance still refused to remove it, citing no evidence that schwannomas increase breast cancer risk. To this day, Denise worries about a recurrence
Denise coped by going “mission crazy.” Not only did she work at her job even throughout her treatments, but she also completely repainted and reorganized her house. At some point, a nurse took Denise aside for a “come to Jesus talk.” It was time to slow down, get beyond her “survival mode,” and linger long enough to smell the flowers. Denise was afraid at first to look at what really happened. But at long last broke down and cried for so many losses, the reflection that followed helped her think about how she could make her life better. Until then, she had not talked about her experience. She now realizes how important it is to talk. “You win, you win, you win… Even with breast cancer, you win.” She sees that “God gave me that time… I built a better relationship with Him.” She notices the miracles that came, “nonstop with people bringing me flowers into work,” and sees breast cancer as “this beauty coming to you… not an ugly thing.” Breast cancer, after all, saved her life!
For Denise, losing her hair was a visible symbol of having cancer.
For Denise, losing her hair was a visible symbol of having cancer.
I, it was so, I think losing the hair was probably the hardest. And it's so vain. It is so vain sounding. But that's who we are as females. And to lose that, I did not want to go out in public. I know there's different options and stuff; the scarves and stuff, but I didn't, I wanted to pretend I wasn't sick.
Denise explains how much work patients have to do when providers don’t communicate with each other.
Denise explains how much work patients have to do when providers don’t communicate with each other.
I became my own advocate for my own healthcare. I, yes, you have all these people. But it's sad it's run like a business. And it's sad. It was nothing personal. I didn’t, some of the people that I encountered, yes, they were - I had a little connection. But for the most part, I had to carry the weight myself. I was the middle person to get these two locations the information. And it's because the two were not communicating effectively, and I had to relay information between the two. Not fun.
Denise had limited options, due to her rural location, but advocating for herself proved helpful.
Denise had limited options, due to her rural location, but advocating for herself proved helpful.
OK. So, in the town that I live, it's a small town, but they do have a place where they do sell prosthetics. My insurance wouldn't allow me to go there, so while I was getting treatment, there was a place there in that town; however, they kind of closed that up. Then at that point, they said, "Now you need to go to [LOCATION] to get your prosthetic." [INAUDIBLE] First and foremost, I don't even have time to take off work to go bra shopping or go get prosthetics. Come on, people. So, I walked into my local place, and I just started crying, and I'm like, "I don't get this. I don't understand this. You're right in my back door. Help me out." And so, that's when a phone call was made, and they made it work magically. I don't know how, but it broke, it broke, again, it had to break all the way down and then voila. It's like, come on. You shouldn't have to fight just to feel like a human being.
Denise had limited options, due to her rural location, but advocating for herself proved helpful.
Denise had limited options, due to her rural location, but advocating for herself proved helpful.
Okay. So, in the town that I live, it's a small town, but they do have a place where they do sell prosthetics. My insurance wouldn't allow me to go there, so while I was getting treatment, there was a place there in that town; however, they kind of closed that up. Then at that point, they said, "Now you need to go to [LOCATION] to get your prosthetic." First and foremost, I don't even have time to take off work to go bra shopping or go get prosthetics. Come on, people. So, I walked into my local place, and I just started crying, and I'm like, "I don't get this. I don't understand this. You're right in my back door. Help me out." And so, that's when a phone call was made, and they made it work magically. I don't know how, but it broke, it broke, again, it had to break all the way down and then voila. It's like, come on. You shouldn't have to fight just to feel like a human being.
Denise’s dogs are her “babies,” but she was afraid around them after her surgeries.
Denise’s dogs are her “babies,” but she was afraid around them after her surgeries.
Yeah, I have pets. I have too many. I have four inside dogs. But you know how they always say like dogs know what's going on with breast cancer? And so, I decided to test that theory out, and it was exactly true. So, I have a little Papillon. He's got the butterfly ears. He's so tiny, so cute. But after I was diagnosed, I watched where, what he did with me. And he laid directly there on my, on my chest, right where it was at. And it was night after night after night that he was right there. So yeah. But he, they were my, they’re my dogs are my babies. So, they were there. And they knew when I was sick and when I was not feeling good. They could tell. Yeah.
What did they do when they couldn’t—when they could tell?
They wouldn't like be all jumpy, jumpy all over me, you know what I mean? They just let me be. You know, maybe they would lay next to me, but they wouldn't be all like excitable. And then too, how I, because I sleep with my dogs, how do you do that with surgery, because I was so fearful that they'd be jumping on me. So, when I did, for both huge, big surgeries, I stayed out of, let them sleep in my, I slept in another bed until I felt comfortable, and then I would put a pillow in front of me, so that, and I hugged the pillow and slept that way. So, they weren't anywhere in my zone. So, and they didn't, but I was - that was my fear that they would come in there and I'd get hurt.
Faith helped Denise feel at ease before surgery.
Faith helped Denise feel at ease before surgery.
My life became very much on the line with that surgery because they were saying I could be paralyzed. So, I had to come to the realization of if this isn't something I can control, I have to give it over to Him. And so, if that means I live, die, or be paralyzed, I got to be good with God's plan. Usually, you have anxiety before surgery. I was so relaxed. Letting go, I felt so good. I know if I was not to make it through, that God would have just embraced me right then and there because prior to that, I went to confession. I had those conversations with God about I'm sorry. And so I knew, spiritually, I was in a good place and that He was there. I felt free. No way, no weight, no stress, no worry, no nothing.
Denise told her clinicians, “you’re in charge of the treatment and I’m in charge of me."
Denise told her clinicians, “you’re in charge of the treatment and I’m in charge of me."
For one, I never wanted to be babied. I didn't like it that they were coddling me like I couldn't handle my own stuff, to my—my own business. I had to go in for a chemo meeting and I got scolded at the chemo meeting. "Where's your support person?" And I said, "my support person is my husband and he's working. And I'm a big enough girl I can handle this". And you know what, I didn't need to—even need to be there. Maybe they—that's their way. But they gave you a three-ring binder and were explaining the different things of chemo, and then you were supposed to watch the video, and you can't have sex, and if you do, protect yourself, blah blah. And it's all good information, but if you're going to give it to me in a three-ring binder, I can easily read it. I need to get back to work. You wasted a whole day when I can just read it. Just hand me the information. Don't treat me like a two-year-old. And I, but I felt very coddled. And maybe some people need that. But I didn't need that at that time because again, I'm thinking, I got to take off for this, I gotta do this, I gotta do this. I was, cancer was not going to be front line and center in my life. I'm sorry. I'm going to live. And my life is, and I got scolded again when we were talking about my work. "Oh no, you're not going to work that much," and I got ticked off, and I said, "Oh, yes I am. Just watch. You don't control me. I control myself." And I told her, too, I said, "I will, you're in charge of the treatment and I'm in charge of me. So you don't tell me how it's going to go." I mean, that's just wrong.