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'A level of fear that you’ve never experienced' Cancer diagnosis not only worry for family

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The tears still flow some days when she gets dressed.

Breast cancer and her long recovery from a double mastectomy have changed Casey Paulin’s life and wardrobe.

Paulin tries not to be self-conscious about her flat chest. Her husband, Kevin, tells her every day how beautiful she is. But when she gets dressed, sometimes she cries.

“It doesn’t really bother me until I’m getting ready. It looks silly. It’s obvious there is supposed to be boobs there. And then I have a woe-is-me moment,” she said.

Paulin had a double mastectomy last year after she was diagnosed with breast cancer; but due to complications after her surgery, she is still waiting to do the reconstruction that she said will make her feel normal again.

She was 37, the same age her grandmother was when she was diagnosed with breast cancer that later spread and killed her.

But Paula’s diagnosis wasn’t the only concern. She also had to worry about the fact that she was uninsured, a decision her husband had to make when the costs became too high for his small business, a staffing company.

Throughout her treatment, the Paulin family has struggled with insurance coverage.

Their plan already was expensive. Kevin Paulin has avascular necrosis, a degenerative bone disease that required him to have a hip replaced and likely will require the other to be replaced. With Casey Paulin’s cancer treatment costs and 20 to 25 percent yearly increases in their premiums, the costs became unmanageable, he said.

They got on a state insurance plan the night before the double mastectomy but later had to cancel the coverage when the price got too high. She is now on a Medicaid program specifically for cancer patients, but she will be able to keep the coverage only as long as she is being treated for cancer, she said.

Casey Paulin resents the fact that, the night before her surgery, she spent hours on the phone confirming that she would be covered under the state plan, rather than spending the time with her family.

“I just felt like I couldn’t concentrate on what was most important, in case something bad happened, because of all of that,” she said.

Soon after surgery, she knew she wasn’t healing properly. Her incisions reopened because of the stretching her skin had to do, requiring doctors to close them again. Then she got an infection, and doctors eventually had to take out one of the expanders that was going to be refilled in preparation for reconstructive surgery.

The other expander was kept in but deflated.

Then came the blood clots.

Casey Paulin has a blood clotting disorder, which was a worry for her recovery. One morning, she woke up and stretched. Her calf hurt. Her back had been hurting, but now it hurt to take a deep breath. She called her doctor, who told her to go to the hospital right away. They found clots in her leg and both lungs.

She stayed in the hospital a week and still takes pain medication to lessen the pain and burning she feels constantly.

The clots changed her treatment path.

She already had decided not to do chemotherapy when testing showed that the treatment wouldn’t be as beneficial for her as it is for some patients, and she didn’t want the side effects.

But now, she couldn’t take Tamoxifen, a drug patients often take to stop the recurrence of cancer because a side effect is blood clots. And any surgery would come with the risk of blood clots, so she couldn’t have a hysterectomy, and she worries about continuing with reconstruction.

“Cancer just gives you a level of fear that you’ve never experienced,” she said.

So everything was put on hold.

The complications and financial struggle took a toll on the family.

Medical bills piled up, and the couple didn’t have the money to pay them. They considered selling their Center Grove area home, but worried they couldn’t get what they owed or anywhere near what was needed to pay even a fraction of their bills.

Casey Paulin got sick of looking at the bills and put them in a box, pledging to pay them when they get the money.

The money issues would cause stress and fights at home, especially with growing worries about when Kevin Paulin would need his other hip replaced.

“We just had to remind ourselves it’s not us. It’s just what we’re going through,” she said.

Casey Paulin did her best to put on a strong face for her children, Chloe, 5, and Cameron, 11. But some days she struggled to get out of bed. She was so tired after just one errand. And sometimes she would quietly shut her bedroom door and sob.

But then she noticed changes in her children. Chloe was throwing fits, and Cameron was losing interest in baseball, a sport he loved.

He wasn’t greeting her when he came home from school, and one day she asked him why. His answer: He was worried he would find her dead.

Suddenly, she realized her kids were feeling the same stresses she and her husband were, no matter how hard she tried to protect them. She vowed to do better.

“I saw a difference in them when they were seeing me healing, and it just pushed me to get better,” she said.

Her family thinks she is too hard on herself. Her mother, Cathy Summers, questions if she could have been as strong if she were diagnosed with cancer.

They talk every day. Some days her daughter will mention having her 10-minute cry, and Summers aches for her.

“You want to reach in and you want to take it away from her,” she said.

She knows her daughter is still scared, but she sees how strong she has become over the past year.

“There is fear, but the way she presents herself and the way she gets on with her life, it amazes me she is this strong,” she said.

“I see her now, and I think how would I react? Could I do what she does,” Summers said.

Kevin Paulin describes his wife as the strongest person he knows.

“Casey handled it like a trooper. She was strong. Obviously she had her breaking points, anyone would, but in my opinion she is an extremely strong woman,” he said.

He tells her as often as possible how beautiful she is, because she truly is, he said.

For a woman, the loss of her breasts is difficult, Summers said, but she is impressed with how her daughter has handled it. When they go shopping for clothes, Casey Paulin knows what will and won’t work. She doesn’t care about appearances or what people think, she said.

Cancer changed their family’s perspective on life, Kevin Paulin said.

“We look at the bigger picture. Does this really mean that much, as opposed to the way it used to be,” he said.

Casey Paulin remembers family members getting upset when her daughter wanted to cut 10 inches off her hair.

Before cancer, that likely would have been a big deal to her, too. But after cancer, she thought: It’s just hair.

“You have no control over any of this. Cancer has a mind of its own,” she said. “It’s a new perspective. There are much bigger things.”

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