Today’s cancer story belongs to Lauren, who has cutaneous T-cell lymphoma, which falls under the umbrella of non-Hodgkin’s lymphoma. “It’s one of the few cancers that you can never say you’re cancer free. So I’ll never technically be a survivor,” Lauren told me in our interview. In cutaneous T-cell lymphoma, Lauren explains, the T-cells within the skin undergo a cancerous transformation, so they manifest themselves on the skin’s surface in patches and lesions. Eventually, if left untreated, tumors can form.
Lauren’s first symptom appeared in high school, when a patch of dry skin, burn-like in appearance, showed up on her hand. It eventually spread further up her arm. A few years later, another patch appeared on her leg. Dermatologists told her it was psoriasis, but the medications they gave her weren’t effective against it. Over a period of thirteen years, Lauren went to see twenty-five different dermatologists, in five different states. (You read that right- 13 years, 25 doctors, 5 states- Lauren’s a military wife, so she’s moved around quite a bit.) The first twenty-four doctors diagnosed her symptoms incorrectly. Lauren kept searching, with the sense that something wasn’t right. Then when Lauren was almost thirty years old, a tumor developed on her arm. The twenty-fifth dermatologist she saw- who happened to be a cosmetic specialist- finally diagnosed her condition correctly.
After the lymphoma was diagnosed, Lauren underwent a series of tests on her liver, blood, brain and bone marrow, to determine the extent of the cancer. About living through that uncertain time, Lauren says, “It’s scary, but it didn’t feel at all like I would have imagined had I not lived through it. It’s scary, but I have a strong faith… aside from the panic I was feeling about the ‘what if’, I just had this sense that it was going to be okay. Knowing that it had been cancer all those years, and just now was finally progressing to the tumor stage, I just had this sense that it was going to be okay.” Thankfully, Lauren’s tests all came back negative, and it was determined that the cancer had not spread to her other organs.
To treat the lymphoma, doctors recommended courses of in-patient chemotherapy and radiation. The possibility of chemo brought up fears about Lauren’s future fertility. She had a 2 1/2 year old daughter at the time, but had suffered a miscarriage earlier that year, and wanted more children. Chemo carries with it risks of infertility (as Laura referred to in her story). Despite the risk, Lauren knew she had to go ahead with the treatment.
For about six weeks, the doctors prepped Lauren for chemotherapy and in-patient radiation. But sometime during those six weeks, something amazing happened.
“My tumor went away.”
Lauren explains, “I have a scar on my arm, it looks like it was surgically removed, but it wasn’t. It went away. I’ve actually been presented at medical conferences because there’s no medical explanation for it.” When Lauren lived in Texas, she met with University of Texas dermatology students once a month to show them her the scar. The professor would ask how the students thought the tumor was resolved, and all the students would say ‘surgically.’ And Lauren would tell them that it just went away.
Lauren told me that most people don’t believe the story without a logical explanation, but because of her strong faith, Lauren accepted it easily. “I knew that God handled it.”
Because the tumor disappeared, Lauren’s doctors decided not to go ahead with chemo and radiation, and instead took a less-invasive approach: phototherapy, which is “basically like a stand-up tanning booth,” Lauren said. UVB radiation zaps cancer cells before they can manifest themselves on the surface of her skin. Lauren is closely monitored to make sure the cancer isn’t progressing. She’ll need phototherapy for the rest of her life, but is hopeful that will be the extent of her treatment needs. Lauren is encouraged to spend time in the sun, and worries about other skin damage, because her father had melanoma several years ago. But when Lauren expressed that concern to her doctors, they said, “we need to treat this cancer right now, and watch you very closely for signs of that other cancer.”
After the change in treatment, Lauren took the risk of getting pregnant again, and though she was scared, because her symptoms had increased during her last pregnancy (possibly due to hormone changes), she had a sense that it was all going to be okay- “and it was,” she said. “It was the best decision I ever made, because I got an amazing son.”
“I feel like God saw this tumor coming down the track and that’s probably why He intervened on that pregnancy [her miscarriage], but I think He also wanted me to get the diagnosis I needed, I think that’s why that tumor came.”
“It has shown me that every day is really a gift. Even when it’s a bad day, it’s a gift. I can see beautiful sunsets from the back of my house… there’s never been a day I’ve watched that sunset and not been thankful for that day… I make sure the people I love know that every single day, to do something that makes me and somebody else happy every single day, because you’re not guaranteed the next day.”
Lauren felt that being a young mother shaped her perception of her cancer. When she was first diagnosed, before she knew how far the cancer had spread and before the tumor disappeared, she remembers thinking a lot about what would happen to her husband and young daughter if she died. “I thought a lot about what their world would look like if I wasn’t here… I don’t remember ever feeling like ‘I don’t want to die’ for selfish reasons, I felt like ‘I don’t want to die’ because I can’t do that to my husband and my daughter.”
“It’s changed me, it’s changed who I am, in that I just feel like every day truly counts.”
This post is part of a series on cancer; previous posts are listed below:
I Was Radioactive In A Padded Yellow Room