A former lingerie league soccer player was diagnosed with terminal blood cancer at age 41.
She says doctors missed early signs of multiple myeloma, which appeared in her urine years before.
When she arrived at the emergency room with throbbing pain, the doctors thought she had carpal tunnel.
The first thing Roban Lampkin noticed were the bubbles. Small, compact constellations in your urine, on the surface of the toilet water.
“I’ve never seen that in my life,” he told Insider. “Bubbles that stayed on the edge.”
Her doctor initially suggested that it could be some type of protein in her urine, which can be a warning sign of kidney damage, but the doctor didn’t think too much of that.
Over the years, Lampkin began to develop a wide range of health problems, some of which were difficult to rule out.
bruises Red dots. Swollen ankles. A revulsion to alcohol. And fatigue: almost constant fatigue.
At one point in the fall of 2019, her tongue and the inside of her cheeks became so swollen with sores that it was difficult to speak. Maybe she had been biting her tongue too much, she thought.
I also had burning low back pain. It became so intense that Lampkin could not get out of bed in the morning unless he, step by step, walked his body up, up, to an upright position.
She felt exhausted. “I’m working, I’m dancing, I’m going to school,” she recalled. “I’m doing too much,” she told herself.
Eventually, Lampkin developed neuropathy, severe burning sensations in her hands and arms that were so acute they “woke me up screaming in the middle of the night.” That’s when she started visiting urgent care and the ER, desperate for answers.
His burning hands were dismissed as carpal tunnel.
At first, doctors dismissed the new pain in Lampkin’s hands as carpal tunnel.
“I knew I didn’t have carpal tunnel,” he said. “carpal tunnel it affects millions of people; there’s no way people work like that.”
After more than a handful of unsuccessful doctor visits over the course of a few weeks, Lampkin once again woke up with excruciating, burning pain in her hand.
That day, “I came in screaming, crying, more out of frustration” to get providers to take her concerns seriously, she said. “I had to remember the pain I had been in.”
That’s when the doctors began a week-long barrage of tests and blood work. First, they discovered that Lampkin’s kidneys were about to fail.
“I was like, ‘What? I’m not here for my kidneys,’” Lampkin said. “‘I’m here because of my hands and my tongue.'”
After several more days of testing, Lampkin’s doctors went back to the bathroom for answers, the same place where their concerns began. He collected all of his urine over a 24-hour period, and that’s how doctors finally discovered that the protein that had been sitting in his toilet for years was now cancerous. Bence-Jones protein, a hallmark of the blood cancer called multiple myeloma. She was 41 years old.
Looking back, Lampkin says the signs of his illness were “things I think most people would miss, not really pay much attention to.”
“Too bad my doctor didn’t either,” he said.
Multiple myeloma is a rare cancer.
Multiple myeloma is a relatively rare cancer, accounting for less than 2% of all new cancer cases, with approximately 34,500 new diagnoses every year in the US But it’s also a dangerous disease, with a 5-year relative survival rate of less than 60%. There are new cancer therapies under investigation, like expensive CAR-Tthat show promise in some people with multiple myeloma, but the cancer affects everyone a little differently, and a functional cure is still elusive.
Today, Lampkin, former lingerie football league player and dancer, she says her bones ache and she is often very tired. It’s frustrating, she said.
“It was a huge life lesson,” Lampkin said, going from working out regularly and feeling “really pretty and fit and athletic and taking care of myself” to five months of chemotherapy infusions, losing her long hair and dealing with the other side effects of cancer treatment.
“It’s still hard, but I’m getting better,” he said.
Two years ago, Lampkin received a bone marrow transplant and his case is considered to be in remission. He is taking a small maintenance dose of a chemotherapy drug and is taking medication for nerve pain. Perhaps if he had been diagnosed earlier, his kidneys might have suffered less damage, but he says he doesn’t like to focus too much on that now.
“I’m here to take advantage of the time I have left,” he said.
Lampkin has 35,000 followers on her myeloma-themed TikTok, where she regularly posts about her symptoms and how cancer has changed the way she views life.
“I only talk about my feelings,” he said. “I think people appreciate that, and feel like it’s relatable even if they don’t have what I have.”
Some women connect with her through shared stories of misdiagnosis or medical gas light. Lampkin is also working to start a new nonprofit organization called the Myeloma Movement, which she hopes will provide funds to multiple myeloma patients, serve as an educational resource about the disease, and fund research for a cure.
Recently, she learned that her grandfather also died of some type of blood cancer, although she is not sure if it is the same one that she has.
“One guy says it was multiple myeloma, another guy says it was leukemia, and then my dad says he just doesn’t know,” Lampkin said. “People have to know what it is, they have to understand.”
Read the original article at Well-informed person
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