Every day she looks at the supply of pills that are supposed to stop her cancer from coming back, and she makes a decision.
Denise Carson calculates how many pills she has and when she is eligible for insurance through her new job. Then she decides whether she should swallow one of the pills she is supposed to take each day or wait a day.
Carson has no other choice. And then she worries the cancer will come back.
For the past several years, including while undergoing nearly all of her treatment for breast cancer, she has struggled with getting and affording medical insurance.
Type of cancer
Stage 3 HER-2 positive receptive breast cancer
Eight weeks of chemotherapy, 12 weeks of radiation, lumpectomy
What cancer taught me
What’s important, and what’s not. Who your real friends are, and who is not. No one wants to be around a sick person.
How cancer changed me
It helped me be more aware of how I treat people and how they treat me. It made me slow down and take stock of my life.
What I would say to someone just diagnosed with cancer
Get as much information as you can, get a second opinion if needed. Know that it is not a death sentence. Listen to what your body needs. It’s more important to take care of yourself today so you’ll be around tomorrow.
She doesn’t have any now, meaning a 90-day supply of Anastrazole, which is supposed to help prevent the cancer from returning, costs $900.
“It’s a Catch-22. Do you pay your rent or do you pay for these pills?” Carson said.
For now, she’s been paying her rent and waiting to become eligible for health insurance since taking a new job at a pharmacy after years of looking for work. The monthly premiums aren’t cheap, but they’re cheaper than $300 per month, she said.
When she was diagnosed with breast cancer in 2006, Carson didn’t have insurance. She had recently taken a server job at a restaurant, and they didn’t offer insurance. She hadn’t had insurance since she had gotten a divorce about a year earlier.
She quickly learned just how expensive cancer can be.
She took shots that were $300 apiece to build up her white cells during chemotherapy. Another shot was $1,500. She got a bill from her oncologist’s office that topped $20,000.
She paid $20 per month for a while, but it wasn’t enough. Eventually, she just stopped getting bills. She doesn’t know whether her account was turned over to a collection office or the hospital wrote off the costs.
Most times, she puts it out of her mind, instead focusing on the fact that she beat cancer. Other times, she gets angry thinking about how people are treated differently when they don’t have insurance.
“There is a difference in how they treat you when you have insurance versus when you don’t,” Carson said. “I didn’t ask to get sick, and I’m sorry I don’t have insurance.”
Carson’s sister, Teri Conard, who works for Marion County Health Department, already had learned about the struggles families face when they have little to no insurance. But seeing her sister go through cancer treatment without insurance made her see those struggles firsthand.
“When you have a family member that goes through that, it really opens your eyes,” Conard said. “What happened to her can happen to anybody.”
Despite the struggles, Conard was impressed with her sister’s attitude during treatment.
She had her rough times, when she was upset or down. But most days, she used humor to lift her spirits and focused on getting better.
“She has that ability that when everything falls down on you, you’re able to come out of it,” Conard said.
Both Carson and Conard agree that the cancer diagnosis helped Carson do what had always been hard for her: ask for help.
For Carson, that help meant her sister covering some bills and expenses, such as a wig after she started chemotherapy. And she had to go to the hospital when she couldn’t pay her bills and ask to make the small payments she could.
“She’s always been a person who is an individual and wants to do things herself. No one can get through that without support,” Conard said.
Carson at first thought she could handle the diagnosis and treatment herself.
She had a lump under her arm that was making her work jacket feel tight. But she never thought the diagnosis would be cancer.
“That was the last thing I thought. Under your arm, you don’t think it has anything to do with your breast,” she said.
But then, during testing, she saw the way the doctor and nurse looked at each other. Their look said cancer.
Even after she got the diagnosis, Carson didn’t want to admit that she had it. She didn’t want to say those three words to her family: I have cancer. And she didn’t want to see their reactions.
So she waited.
She went back for more testing. She had a biopsy. She got the confirmation from her doctor, a Stage 3 cancer diagnosis.
She heard the words the doctor was telling her, that if her cancer had reached her organs, there was nothing they could do for her. But she doesn’t think she truly understood.
“I heard all of this information, but it wasn’t registering how bad it was,” Carson said.
Eventually, her family noticed something was up. They confronted her, and she had to tell them, making the diagnosis finally real.
Luckily, the cancer hadn’t reached her organs, though it had gotten into her lymph nodes.
She underwent eight weeks of chemotherapy treatments, and her sister insisted she come to treatments with her.
Carson hesitated but finally accepted. Conard had seen people go to treatment alone, and she didn’t want that to be her sister.
During chemotherapy, Carson had to give herself shots in the stomach to boost her white blood cell count. She shook and trembled for 40 minutes before she could do it. But she didn’t want to have to keep bothering everyone and asking for help, she said.
Carson also had to apply for assistance for the first time in her life.
She applied for Medicaid but was denied because she still was working. She applied for Social Security disability but was denied because she wasn’t sick enough to be considered disabled, Carson said.
The one thing she did get: food stamps. When she received the card in the mail, she threw it on the ground in disgust. What person going through chemotherapy treatment wanted food, she thought.
Finally, just before she had a lumpectomy, she was accepted onto a state insurance plan, which has a sliding scale for monthly premiums based on income.
Throughout everything, Carson continued working.
“You may be sick, but you still have bills to pay,” she said. “It’s what kept me going. As long as I can still support myself, I can keep going.”
She knows her credit is likely ruined, and she still feels the sting of one collections person she dealt with who told her she should be going to a hospital that specifically dealt with people without insurance.
And she feels for anyone who has been in her shoes — applying for help and getting nowhere, feeling embarrassed and discouraged.
“You’re not supposed to get sick and get treated like this,” Carson said. “When you go to the hospital, they ask for insurance before they ask what’s wrong with you, and I don’t think that’s right.”
But, if it’s possible, she believes cancer changed her for the better.
She made amends with relatives and old friends she had been feuding with, because in the back of her mind, she worried she wouldn’t be around much longer.
She became closer to her sister and began to feel OK asking for some help from her family after pushing everyone away during her divorce, she said.
“If I wouldn’t have had her to help me, I don’t know where I’d be. You need a person like that,” Carson said.
“Maybe that was God’s way of waking me up.”