A survivor of a rare form of cancer and a Sarcoidosis patient whose symptoms once deteriorated so severely that she was placed in hospice care, Cascenta Whyte has become a fierce advocate for her own health.
Cascenta’s symptoms began to surface shortly after she had a minor surgery at age 27. She initially dismissed the bouts of vertigo as a possible after effect of the anesthetic. But over the next month, her condition deteriorated rapidly. She lost the ability to control the directions that her eyes pointed, needed to cling to walls in order to walk, experienced asthma attacks and began to lose her ability to spell. Multiple trips to the hospital produced no explanation.
“On my third visit, they ran psychological tests because they actually thought I was faking it,” Cascenta said.
Her condition worsened as she lost her ability to swallow, wash herself or remember simple things, like how many siblings she had. After exploring theories that Cascenta might have cancer, MS or other diseases, physicians concluded that she had a rarecombination of lung and neuro-sarcoidosis.
Treatment included extremely high-dose prednisone which gave her hypertension and diabetes. It even included a recommendation by one doctor to drill a hole in her skull and install a stent in her brain. She subsequently fired the doctor.
“I wanted options and nobody seemed to know what to do. I felt like I was a test dummy,” Cascenta said.
Whyte’s extensive research efforts and vehement quest for expert, collaborative doctors helped her steadily improve her physical condition and reduce her medication levels. When she was diagnosed two years later with a rare form of lymphoma, Cascenta was able to find oncologists who had special expertise in both lymphoma and Sarcoidosis, and who worked collaboratively with her sarcoidosis doctors.
“They reached out to my neurologist and were so willing to work as a team. That’s when I learned how this disease needs to be treated,” Cascenta said.
Cancer-free but now coping with the recent additions of nasal and skin Sarcoidosis, Cascenta is a fervent believer in doing everything possible to improve her health and healthcare. Research has prompted her to change her diet to avoid foods that promote inflammation and include foods that boost her immune system and help her maintain healthy blood pressure and blood sugar levels.
She also regularly debates her doctors.
“Just because a doctor prescribes a medication for you doesn’t mean you have to take it,” she said.
Cascenta researches all medications recommended, including their side effects and success rates, and talks to doctors about what could be the most prudent treatment choices. She monitors her own condition to recognize and attempt to avoid situations that can exacerbate her symptoms. She also tracks her pain to determine how to limit her pain meds without allowing pain levels to over-stress her body.
“You have to know yourself and be your best advocate,” she said. “I have learned over the years that I must and can help myself through things. You can’t put all that responsibility on doctors.”