Since 2007, Carolyn Vonderwell has received a lot of bad news.
In the spring of that year, she was diagnosed with stage IV inflammatory breast cancer, a rare and very aggressive disease in which cancer cells block lymph vessels in the skin of the breast. It accounts for only 1 to 5 percent of all breast cancers diagnosed in the United States.
During an appointment with Dr. Bryan Schneider at the Indiana University Simon Cancer Center in Indianapolis, scans were performed to see if cancer had spread to other parts of Vonderwell’s body.
Unfortunately, a tumor was found on the right side of her brain, and she underwent gamma knife surgery.
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Between that point and starting chemotherapy, a tumor on her uterus caused bleeding, so she had a hysterectomy.
Then when she started chemotherapy, she lost her long, wavy, auburn hair. It also made her feel really sick, and she had to have blood transfusions.
After some recovery time, she began radiation treatment of her brain and left breast. Her hair had started to grow back a little, but Schneider told her she would lose it all again once radiation started.
In late summer 2008, she went through DIEP flap reconstructive surgery on her left breast.
For the next few years, she traveled to Indianapolis every three weeks for Herceptin infusions, which wrap around the cancerous spot and prevent it from growing or spreading.
But in June 2011, while driving through Kentucky, she had sharp pains in her lower neck and upper back. A scan revealed cancer in that area. She was put on medication for a while, but it became too expensive, so she went back to Herceptin.
She has been taking it ever since and was doing pretty well until a recent scan showed a spot on her lung. She has an appointment Oct. 25 to check on it.
Despite all she has been through, the 50-year-old Seymour resident said a positive attitude all along has made a difference.
She initially was told she may only live a year or two after her diagnosis, but she’s still alive nine years later.
“I try not to dwell on it because I think that puts bad vibes in you, and I want my 20 years,” she said. “My husband goes, ‘Well, I want more.’ I said, ‘I won’t ask God for anymore because that’s cheating. But if God would like to give me extra years, I won’t deny them.’
“It has been nine years, and I’m thankful for every one of them,” she said. “I will fight to the end.”
Around Christmas 2006, Vonderwell said she noticed a difference in her left breast. Her children would sit on her lap while she read to them, but when they leaned back on her, it hurt her breast.
She didn’t think much of it until her breast started growing, bruises appeared and the skin turned red, tough and thick.
‘Absolutely blown away’
During a visit to her OB/GYN’s office in February 2007, a doctor took one look at Vonderwell’s breast and said she needed to get an ultrasound.
After a mammogram and an ultrasound, her family doctor told her something looked suspicious and they wanted to do a very extreme biopsy.
That’s when it was determined she had breast cancer.
Since she had a history of ovarian cysts and great-grandmothers who had died from uterine cancer and ovarian cancer, Vonderwell said she never expected to have cancer in her breast.
“I was absolutely blown away,” she said.
Until she could see Dr. Dolores Olivarez, an oncologist in Seymour, Vonderwell researched breast cancer online and came across the inflammatory type. She had a good idea that’s what she had.
For her appointment with Olivarez, Vonderwell was accompanied by her mother, Dena Moore, and friends, Teresa Pollen and Rhonda Narron.
“Just to keep our minds busy, you put all of us together, we’re always joking and teasing, and we were just trying not to think about (the doctor’s visit),” she said. “Dr. Olivarez, when she walked in, she goes, ‘I’ll have to say, this is really nice because I’ve never heard so much laughter coming out of one of my rooms that I’m going into.'”
But the laughter stopped when Olivarez confirmed Vonderwell’s worst fear — she had inflammatory breast cancer.
‘A circle hug’
“As soon as we were all in that parking lot, we just all started bawling and got in a circle hug,” Vonderwell said. “I don’t know how long we just cried and cried.”
A week later, she was linked up with Schneider.
He learned Vonderwell had HER2-positive breast cancer, which is a cancer that tests positive for a protein called human epidermal growth factor receptor 2. HER2 promotes the growth of cancer cells.
In about one of every five breast cancers, the cancer cells have a gene mutation that makes an excess of the HER2 protein. HER2-positive breast cancers tend to be more aggressive than other types of breast cancer.
“When you have that with cancer, it’s like it’s got all kinds of antennas, and it’s going, ‘Spread, spread, spread,'” Vonderwell said. “It’s in the cancer gene, and it mutates.”
Scans were performed to see if Vonderwell’s cancer had spread. That’s when the brain tumor was discovered, and she underwent the gamma knife surgery, which involves lasers rather than making cuts.
After that surgery, she had to lie down at an angle to keep swelling and bleeding down. She became bored while lying around, so her mother gave her a knitting wheel and some yarn.
She began making knitted hats for adults and children and placed them on tables at the cancer center and radiation room for patients to take.
Over time, Vonderwell said she has made hundreds of hats, and she’s now learning to make scarves.
“You don’t realize — except for the people that shave their heads on purpose — how cold it is without hair,” she said. “Then it’s so hard for a woman.”
Shortly after her gamma knife surgery, she had her hysterectomy.
Then she was able to start chemotherapy, but she wound up having several blood transfusions because her blood count was getting really low.
Her husband, Kevin, also had to give her shots in her stomach, and she got sores in her mouth. Mary’s Magic Potent helped with the latter problem.
“It’s the worst-tasting mouthwash. You can’t even imagine how bad it tasted, but that puppy works fast,” she said.
Losing her hair
Vonderwell went to Indianapolis six times — once every other week — for chemotherapy.
“I thought that the more I got used to having it, the better it would get,” she said. “It was the opposite, and it wasn’t clicking. I said, ‘Well, this isn’t so bad. I can handle this.’ I was saying it to one of the nurses, and she was just patting my hand and said, ‘I’m so sorry to tell you this, it starts out good and gets worse.'”
During one of her treatments, Vonderwell had to eat Popsicles to keep her mouth cold and nurses had to keep ice packs along her arm where medicine was being injected because it would make her hot.
The chemotherapy also caused Vonderwell to lose her hair.
“I never liked how I looked, but people always told me my hair was so beautiful,” she said. “I felt like I lost the only thing that was pretty on me — my hair. When I was going through all of this rough chemo, I thought, ‘It will just come back.’ I knew there was a chance it wouldn’t come back the same color, but at least I’ll get my hair and I can color it.”
In the fall of 2007, Schneider strongly recommended Vonderwell get whole brain radiation to check for other possible tumors.
At that time, some of her hair had started to grow back. But Schneider told her once radiation begins, her hair likely would fall out again and may not grow back.
“I was like, ‘What?'” Vonderwell said. “I said, ‘I don’t think I’m hearing you.’ I made him repeat it six times. I didn’t want to hear it. Besides the shock of having cancer, the next-hardest part for me to hear was I would not get my hair back.”
Vonderwell stepped out of the room to collect her thoughts and talk to her husband, mother and Pollen. They helped her realize she needed to go through with the radiation.
Losing a loved one
In late October, she began radiation of her brain and left breast. That required traveling to Indianapolis five days a week. Her mother, stepmother and mother-in-law all chipped in to drive her to appointments.
At Thanksgiving, family members noticed her mother-in-law’s stomach had expanded. Her mother-in-law went to the hospital and learned she had pancreatic cancer. She died during the first part of December.
“I felt so guilty because she wasn’t with her husband. She was with me taking me to the hospital and taking care of the kids because her son was in Nashville, Tennessee,” Vonderwell said.
Vonderwell’s brain radiation ended around Thanksgiving, and the breast radiation was over right before Christmas.
After about six months passed, she was given a couple of options for reconstructive surgery.
She chose DIEP flap, which involves making an incision along a person’s bikini line and taking a portion of skin, fat and blood vessels from the lower half of the belly and moving it up to the chest and forming it into a breast shape. The tiny blood vessels in the flap, which feed the tissue of the new breast, are matched to blood vessels in the chest and reattached under a microscope.
On average, the surgery takes between six and eight hours. But for Vonderwell, it took doctors 16 hours to complete, and she experienced severe pain when she woke up.
“I was like, ‘I think I’ve been ran over by a semi who backed up and ran over me 20 times,'” she said.
Vonderwell had received Herceptin infusions after chemotherapy ended and went off of it during radiation. She then started taking it again once radiation ended.
In 2011, she tried to go back to work to give her some energy and get her mind off of her pain and discomfort. But in June, she experienced burning and hurting in her neck and back while driving in Kentucky.
Her family doctor determined she had the beginning of shingles and gave her some medicine to take. Then while visiting Schneider for a Herceptin infusion, she told him about the pain she had been experiencing.
A scan found cancer in her lower neck and upper back. She had built an immunity to Herceptin, so Schneider took her off of that and put her on a different medication.
She had to take four of those pills every day. A month’s supply cost $14,000, but she only had to pay $700. That wound up being too much to handle, and after six months, she asked to be put back on Herceptin.
Vonderwell has been receiving those transfusions ever since.
With everything she has gone through, Vonderwell said if women notice something different in their breast, get it checked out.
“Just don’t let it go,” she said.
Through her battle with cancer, Vonderwell said family support and a positive attitude have kept her going.
“You’ve got to have the will to fight, you really do,” she said. “I know sometimes, there are dire situations, but I think you can make it a lot better for yourself and the people around you because it doesn’t just affect you. It affects your circle.”
Name: Carolyn Vonderwell
Education: Seymour High School (1985); Ivy Tech Community College (associate degree in physical science and a minor in photography, 2001)
Occupation: Homemaker and learning coach
Family: Husband, Kevin; sons, Mitch, Max and Noah