By Ina Joseph
One Woman’s Story With So Much to Teach Us
Gospel music, her son, and “lots of prayer”. Beyond medicine and support groups, those are the things that have kept Rose-Laure Salomon Mathieu going after her battle with breast cancer. Between apathetic healthcare providers and debilitating body-image struggles, Rose’s breast cancer survival has been taut with hardship.
“I don't want to say ‘why me’, but you kind of wonder...when you try to walk a certain path and try to do everything right... how certain things still happen to you. But some people have it worse; [breast cancer] could be deadly, but thank God, God spared me.”
"Rose’s story speaks to the beauty and spirit of Rose – an immigrant, mother, and survivor."
Despite the physical and emotional scars her battle left her with, that gratitude prevailed. At no point during Rose’s interview did she shy away from the difficulty of her experiences. She even warned that she may cry while telling her story because of the emotional weight it carries. And yet, not once did Rose shed a tear. Her eyes gleamed with fortitude and her voice never wavered. With every harrowing reflection, there was a “thank God” or “I’m grateful” to accompany it.
Rose’s strength and story can speak to so much. It can speak to the self-sacrifice of women with families to care for. It can speak to the resilience of Black women in the face of inequitable healthcare. But most importantly, Rose’s story speaks to the beauty and spirit of Rose – an immigrant, mother, and survivor.
Before receiving her diagnosis in 2014, Rose had no reason to expect that she would get breast cancer. She moved from Port-au-Prince, Haiti to the United States at 16 years old, then relocated again from New Jersey to Florida 17 years later in 1988. After the upheaval of resettling multiple times in a fairly new country, Rose married her husband in 1990 and cared for him as he recovered from a brain tumor and sickle cell disease shortly after their wedding. All the while, Rose continued to receive regular mammograms while juggling increasingly demanding jobs in the nursing field. Her health always remained consistent.
After facing problems with her hospital’s management early in her career, Rose decided to transition to agency nursing. “I worked in several hospitals [in] different areas; pediatric, psych, you name it,” Rose explained. In the midst of all the pressure of agency nursing, her husband’s health was on the decline. Although Rose was getting older and her husband’s condition was getting poorer, they both still yearned for children of their own. Thankfully, Rose’s health was still so steady that doctors deemed her fit for in vitro fertilization at 56 years old. The embryo took and Rose’s pregnancy led to a healthy baby boy - Gerard - in 2010.
The aforementioned mammograms continued throughout Rose’s adult life - before, during, and after her pregnancy. Since her twenties she would accumulate a benign fluid in her breast as a symptom of her menstruation, so the regularly scheduled mammograms and ultrasounds Rose underwent simply became a precautionary routine. Despite the turbulence in her life and the hormonal impact of her fertility treatment, no problems ever arose during these check-ups. So, when Rose realized she was the last one in the attending room after a run-of-the-mill appointment in March of 2014, she grew concerned.
"I thought it was unusual [that] everybody else left [the attending room]. And I was still in the attending room when the nurse told me that the doctor- the radiologist - wanted to talk to me.”
The radiologist went on to tell Rose that there was “something suspicious” in her left breast; that she should schedule a biopsy because the “suspicious something” looked like the beginning stages of breast cancer.
“I was so devastated. I started screaming. I was just ...I couldn't believe it. I was in shock, I didn't know how to react, but I was just screaming.”
Rose confided in her sister, Mirlande, immediately after her diagnosis and moving forward. Coming from a family of healthcare practitioners – from ICU nurses to physicians - Rose often looked to her family to help her navigate what felt like utter chaos.
“When I was diagnosed, everything was just... rush, rush, rush, I couldn't think. I didn't know what questions to ask. That was one of the reasons that I called my sister to help me [as well as] my nephew, who is a physician. So, I asked them to check for me and help me make a decision because... the medical doctors, they were just telling me one thing after another thing after another. It was very traumatic.”
And the trauma only continued as Rose underwent two biopsies in a matter of weeks, both of which were incredibly painful. Ultimately, after the biopsies and a number of appointments, Rose decided to have the mastectomy so that "later on, I wouldn’t have to go through the same trauma again.”
All seemed well with her treatment. Despite the malignant nature of her triple negative breast cancer, Rose responded well to the chemo. Meanwhile, a steady stream of family members, with Mirlande at the helm, visited constantly to support Rose in whatever way they could. The support from her family was especially valued given the lack thereof from Rose’s colleagues and doctors.
"“When I was diagnosed, everything was just like, rush, rush, rush, I couldn't think. I didn't know what questions to ask. That was one of the reasons that I called my sister to help me"
Doubt from Doctors
The next step in Rose’s treatment was radiology, a process that doctors insisted should be relatively painless. And yet, Rose did feel pain. When she tried to explain to her doctors the redness and irritation she felt, they simply overlooked her symptoms.
"When I told the doctors that I was having pain— what I was going through— it felt like they didn't want to believe me. But I had patients that I met, and one...said, ‘The radiation can burn your skin, so this is what you do to prevent your skin from getting burned so much.’”
That advice was to use aloe gel to soothe the skin from the radiation. This was the first among many pieces of simple, yet useful knowledge Rose received from a fellow patient, rather than her own doctors. As a nurse, the irony of receiving apt medical advice from her peers in recovery rather than the professionals was not lost on Rose. And it continued after Rose’s mastectomy.
The decision to pursue reconstruction surgery is monumental for many breast cancer survivors. However, due to her traumatic whirlwind of a breast cancer journey, Rose didn’t have the knowledge or emotional capacity to place much focus on it. In the midst of numerous appointments with various doctors, it was never clear to Rose what questions she should be asking and to whom she should raise them. When it came time to decide on her reconstruction, this uncertainty only amplified her trauma.
“During my radiation, [my doctors] had referred me to a plastic surgeon to help me decide about my reconstruction surgery. So, he gave me the impression that... physically I was going to look much better and that it was going to help me with my self-image,” Rose said.
This wasn’t the case at all. To this day, Rose struggles with her body image thanks to the decision rushed onto her by male doctors and a male surgeon. It was only months after her reconstruction, during a conversation with a fellow survivor who had opted out of the surgery, that Rose realized she could’ve done the same.
“I didn't get that option. Pretty dramatically, I was talked into doing the reconstruction. If I had known I could do that and known I would feel this discomfort and stiffness [post-reconstruction], I don’t know if I still would’ve gotten it. But I’m miserable [with the surgery]. I’m miserable to this day.”
As Rose experienced psychological distress due to her body-image struggles, she was referred to a psychiatrist who would merely prescribe needless medications. “All they do is keep giving you drugs. It’s like they never believe what you’re going through.” Adequate treatment was always in question as doctors continuously denied her symptoms and experiences, and even continue to do so as she receives treatment through Medicare.
Now, though, Rose knows. Rather than listen to the misguided advice of impersonal healthcare practitioners who make her “feel like a burden”, she’s learned to follow her own instincts as a former nurse, as well as other survivors’ experiences. “When I hear other survivors talking about [their experiences], I realize I’m right! When I complain about such and such symptoms, it’s not just me. I’m not crazy.”
Had Rose’s doctors established a more communicative and informative relationship with her, perhaps the misery and purported “craziness” could’ve been avoided. While Rose sites the surrealism of her breast cancer journey as a reason for so much misinformation, in retrospect she can see other factors that may have also had an impact.
“When I was going to get my treatment, I didn't think anything about race or gender... but now I'm seeing so much." Rose continued to describe that there’s “certain help you don't get” as a Black woman and immigrant. “Help” including tips to use aloe on radiation burns, options other than reconstruction surgery, or simply having doctors believe your symptoms. Her impression isn’t unfounded. Rose’s discernment fits into a wider narrative of inequitable healthcare for Black Women in the United States. One of the most popularized stories, Serena Williams’ nearly fatal pregnancy, was an ordeal that began with doctors not believing her symptoms.
An Ongoing Journey
As Rose approaches her sixth-year cancer-free, the journey still continues. She continues to experience physical symptoms as a result of her mastectomy and the chemo therapy, symptoms that she needs to advocate for herself for doctors to acknowledge and validate. In fact, it’s only been through sharing experiences with fellow survivors that Rose has been able to identify probably causes to current maladies she faces, from numbness in her foot to spasms in an entire leg. Nevertheless, she finds ways to cope with the emotional and mental toll her breast cancer took on her.
“I go through my periods of up and down. Sometimes, it hits me, and I have my tears. But prayer, lots of prayer [helps me]. And listening to gospel music, listening to people’s inspirational messages not to give up. Of course, my little one, my boy. He’s my world, he’s my strength. And, finally, being in the health field...I realize that there are other people who had it worse than me. So, God is with me, and that gives me courage and gives me strength.”
By no means has Rose allowed breast cancer to halt her life. She continues making connections with women in support groups, learning how to open up about her own experiences, and making plans for various philanthropic pursuits for hospitals in Haiti and for multicultural youth in the U.S. Rose's biggest ambition? To write a book about her journey.
"As a survivor, it takes determination. I used to be a very quiet person...But I realized that I have a lot to say from my experience that can benefit other people. It's getting a little bit better- talking about it - because I realized that before, when I used to keep things to myself, it was more painful. When you talk about it and you hear a different opinion [from] other people that are going through the same thing... you feel like you're not the only one going through this. It will get better. It's gonna get better.”
"I used to keep things to myself, it was more painful. When you talk about it and you hear a different opinion [from] other people that are going through the same thing... you feel like you're not the only one going through this. It will get better. It's gonna get better.”"
Click here for more information on how to advocate for yourself and your loved ones in the face of inadequate or inequitable healthcare. For more information on mammograms, breast self-examinations, and early detection of breast cancer, visit https://www.nationalbreastcancer.org/early-detection-of-breast-cancer/