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Kari Kolstoe, 60, told CNN she was diagnosed 18 months ago with neuroendocrine cancer, which starts in the digestive tract and it makes carcinoid tumors all over your body.

Since her diagnosis, she’s undergone four rounds of chemotherapy and had her ovaries removed in January, but that did not stop the spread of cancer. It has now made its way to her lower back.

Kolstoe is on the ship with her husband, Paul. The couple live in Grand Forks, North Dakota.

Kari said since her diagnosis, her doctors have given her medication to manage her pain, but she hasn’t been given anything to attack the cancer itself and that’s why getting off the Grand Princess is so important.

Kari Kolstoe with the medications she takes for her cancer.

She said she has the utmost sympathy for the passengers and crew that have been diagnosed with coronavirus, but she’s concerned that if she doesn’t get the proper treatments her body will fail her.

“I have rights, too,” Kari said. “And if I don’t have the coronavirus, I need to get that found out sooner rather than later because every day we argue about where we (the ship) are going and what the protocols are going to be, my cancer is growing.”

A total of 46 people on the ship were tested for the virus with 21 testing positive for the infection. 24 were negative and one was inconclusive, Vice President Mike Pence said during a Coronavirus Task Force press briefing Friday. Of the 21 people who tested positive, 19 were crew members of the ship and two were passengers.

Passengers learned about the test results from watching news coverage of Pence’s briefing.

Living in a ‘cancer world’

Kari said she and Paul had been looking forward to the trip for almost two years. With careful consideration the couple decided to go on their cruise to Hawaii despite all the medical complications that had come to light.

“‘We think you should go on the cruise and then come back, and we’ll be ready to start this treatment,'” Kari said her doctor told her. “So, it kind of looked like the doc opened a little window for us.”

She said she did start worrying when she heard about the outbreak of coronavirus on the Diamond Princess cruise ship in Japan last month. More than 3,500 people were quarantined aboard that vessel for 14 days and more than 600 confirmed cases of the virus have been linked to the ship during its quarantine.

“We had trepidation to do it, but it was going to be this great time,” she said. “All we had been doing is living in our cancer world. Paul’s dad died seven weeks ago, his mom has pretty severe cancer at 92, so we just had all of this stuff going on, and we thought this would be a break from this cancer world.”

And then their trip which was supposed to be a break for the couple has resulted in an ongoing quarantine with no indication of an end.

“My first thought when we got that letter underneath our door on Wednesday was ‘Oh my goodness, we’re not going to be able to get back,'” she said.

Missed connections

Kari said cell service and Wi-Fi on the cruise has been intermittent. She’s been trying to keep in touch with her family as much as possible throughout the quarantine.

“She is the toughest woman I know,” Liz Mackowick, Kari and Paul’s daughter, told CNN. “We are trying to hold to some hope that something will happen today to get her off that ship and someone out there realizes her medical needs and can provide some assistance.”

With her liver covered in tumors, Kari said lying down and sitting has proven to be quite difficult and only makes things worse, but she’s trying to manage the pain with her medications.

“It’s not helping to be cooped up in this tiny, little room,” she said.

The Grand Princess asked passengers to fill out a medication refill request form to get an understanding of who needs medical assistance, according to Kari.

The form asks passengers to rank their medical issue as appropriate on a scale of 1-5, with No. 1 being urgent, life-threatening assistance and No. 5, which meant not needing any regular medication for the next seven days, according to the form.

Kari said she believes she falls under the No. 2 category, which is someone with an “urgent pre-existing medical appointments scheduled within the next 7 days.”

Kari Kolstoe was asked to fill out this medication refill request form.

After filling out the form and handing it in, Kari said she has yet to talk to anyone about her needs.

“It does make you feel like no one cares in here,” she said.

For now, Kari said she remains hopeful that help is on the way.

“I know that rights for the common good trump everything else, obviously,” she said. “But we are people too, and we all have lives and people who love us, and we love them.”

Kari said people, including doctors, often don’t know how to explain all that is going on in her body with this form of cancer. She said people die from neuroendocrine cancer and don’t even know they have it.

“Days really make a difference,” she said.

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