Even on good days, Gloria Smith’s voice is a hoarse, raspy whisper — and on bad days, it can fail her altogether. But Gloria, 66, keeps talking anyway because there is much she wants to say about the health care encounters that left her in this situation.
Gloria feels blessed to be alive — "with four beautiful children, nine grandchildren and seven great-grandchildren" — because she was not yet 30 when she first faced a potentially-deadly disease. In 1973, after feeling "rundown" and noticing discomfort in her genital area, Gloria went to two doctors before one performed a biopsy and gave her a diagnosis: There was a cancerous growth in her labia. The doctors who operated told Gloria they removed all the cancer and that tests of lymph nodes indicated the cancer had not spread.
Gloria considered herself lucky and went on with her life. She worked various jobs in retail, went to secretarial school and hairdressing school but didn’t find work in those professions. Then she trained to become a state-tested nursing assistant (STNA), and worked a series of jobs in that field. Throughout Gloria’s life, moving among employers has meant seeing many different medical practitioners — in private practices, urgent care clinics and ERs — who each started from scratch in understanding her medical history.
In the early 1990s, she says, "I was feeling really sick and rundown again." A vaginal exam led to another biopsy and another diagnosis: cervical cancer. Gloria again underwent surgery "and thank God they got it. And they tested lymph nodes, too, and didn’t find any that were positive." Throughout the 1990s, Gloria continued to work as a nursing assistant but lost jobs in two cases, she says, because "I was still going back and forth to doctors so much" with various concerns.
As she spent more time in health care systems, Gloria developed an unofficial, personal measure of whether a new practitioner actually was looking closely at her case. "I had pneumonia when I was eight years old and from the first time I had a chest x-ray, it showed scars from the pneumonia. So over the years when I had more x-rays, one doctor would comment on those pneumonia scars — but I’d go to another doctor and they’d never notice. I began to question how closely doctors are looking at the patient’s history and tests."
By 2002, a mass on the right side of Gloria’s abdomen "was hurting all the time, sometimes so bad that it made me stop in my tracks." Surgery confirmed cancer in her right ovary and it was removed — again, with lymph nodes testing negative. Two days before that surgery, Gloria says, she threw away her cigarettes (after smoking for decades) and has not smoked since.
In 2005, Gloria began persistently experiencing a soreness in her throat and difficulty swallowing. A doctor in an urgent care clinic "gave me a swallow test and said it suggested some kind of blockage, but didn’t give me a diagnosis. I kept going back and forth to practitioners but nobody could tell me what was wrong." By summer 2006, Gloria says, a friend at church suggested the symptoms might relate to the thyroid, the butterfly-shaped gland at the base of the neck. "I took that idea to the doctor," Gloria says, "and that’s when they sent me to the nuclear medicine department." She swallowed a pill containing radioactive iodine, then underwent scans that traced the iodine absorption to check for thyroid conditions including nodules, cancer or goiter (when the gland isn’t making enough of a hormone the body needs and swells to try to compensate).
Several weeks later, Gloria says, "I got a letter in the mail stating they had found I might have a goiter. I tried to talk to that doctor, to ask who to see to take care of it. But for months I couldn’t reach anybody to tell me what to do next." When she finally got in to see a new physician, Gloria says, he did a blood test that should have revealed a thyroid condition "and he said it came out negative." So Gloria was neither treated for a thyroid condition nor examined for some other cause of her symptoms and in the meantime, she says, "I kept getting more hoarse, and feeling something like a ring tightening around my neck."
In 2007, Gloria became so dizzy on her way to work that she went to the ER and was admitted. "They kept me for a week, looking for the cause, and finally they said I had really low platelets and that’s what caused the dizziness." One possible cause for low platelets is cancer — but even given Gloria’s cancer history, the treating doctor monitored the platelet count but didn’t suggest further tests for cancer, she says.
By March 2008, Gloria says, "I couldn’t breathe well enough to go from here to there. They’ve told me all this time there’s nothing wrong, but there has to be something wrong." When she went to the hospital, she says her blood oxygen was so low "that they immediately put me on oxygen. Then they examined me, putting tubes in the back of my throat, and I heard them whispering to each other. And finally I was told, 'You may have cancer in your larynx and you may need an operation.'" Within hours, she says, doctors removed parts of her vocal cords "and a tiny bit of my voice box" and installed a tracheostomy, a surgically-created passage to her windpipe so she could breathe despite the cancer’s and surgery’s effects.
After the operation, Gloria says doctors told her they had gotten all the cancer "and felt it could be dealt with completely by doing follow-up radiation. So every day for 35 days, I’d go for radiation. But after I found out what was wrong, and that it could be dealt with, it was all right —it was the not knowing that really gets you!" With what remained of her larynx and vocal cords, Gloria could speak in a broken, hoarse voice by putting her finger over the hole in her tracheostomy. "They thought I’d be wearing the 'trach' for two years but from my nursing experience, I knew how to care for it," she says, "so within six months it was out." The loss to her voice is permanent, but Gloria has made peace with that outcome: "It could have killed me!"
"For this cancer, I’ve had the best doctors," she says. "They’re still trying to make sure everything is going as it’s supposed to go. If they wanted me to come for follow-up every day, I would have done it, because I knew they were taking care of business. I can’t say that about all the doctors before this; I hate to put it so drastically, but they just didn’t seem to care." In March 2011, doctors told Gloria she could scale back check-ups from monthly to twice a year. She considers that a victory — and proof that in advocating for her own health, "my persistence paid off."