‘It has been exhausting’: Veteran’s wife shares monthslong fight for benefits

FIGHTING: Arlene Sibetang, left, and her wife, Layla Sibetang, right, shared their struggles in getting Arlene Sibetang, an Army veteran, cancer treatment and care from the Veterans Affairs Office. Photo provided by the Sibetang family  

Cancer is a vicious disease, one that does not discriminate. It can bring the strongest to their weakest moments — moments that can make a person feel helpless. But, for one veteran battling cancer with all her might, it’s the lack of help from the Veterans Affairs Office that she said has brought on that feeling.

Arlene Sibetang is a firefighter medic with the Guam Fire Department. For years she has rushed to the aid of island residents, gaining recognition for her selflessness among her peers and family. As an Army veteran, she has seen combat and fulfilled her duty to her country.

These days she is fighting for her life. She was diagnosed with stage 4 cancer, advanced aggressive metastatic appendiceal adenocarcinoma, in October of 2021.

“Arlene has been on hospice. It has been exhausting for months continuing to fight for her benefits, to get her the care needed while seeing her suffer for so long,” Layla Sibetang told The Guam Daily Post.

But, Arlene Sibetang has not given up her fighting spirit.

Layla Sibetang, Arlene Sibetang’s wife, spoke on her behalf in the hope of sharing the challenges that they have encountered with local doctors, medical insurance and the Department of Veterans Affairs.

“It started last year in March, she went to FHP because she had abdominal pain, they couldn’t treat her there for COVID-19 related symptoms, so I took her to GMH,” Layla Sibetang said.

Lab work and scans conducted at the hospital showed the tremendous pain she experienced was due to a ruptured appendix. An appendectomy was performed and she was discharged from the hospital with a drainage tube.

Arlene had the surgery at Guam Memorial Hospital, days later she was admitted to Guam Regional Medical City for complications. The cancer had latched on to the drainage tube, upon removal it spread across her abdomen.

Not knowing that the cancer spread, she was discharged. She had a follow-up soon after with the surgeon who performed the appendectomy and was cleared to return to work.

But Arlene Sibetang continued to experience abdominal pain. Her wife said she trusted that both hospitals didn’t miss anything, and assumed over-the-counter medications could help.

Doctors had missed the cancerous tumor that was present.

“They got a hold of the pathologist that did the biopsy and they had to redo it because the pathologist didn’t know there was cancer on her appendix before it was removed,” Layla Sibetang said. “The pathologist didn’t note it and it shows clear on the paperwork.”

By the time medical professionals found a tumor, the cancer had spread throughout her stomach.

Arlene Sibetang sought care off island for a specialized surgery needed to remove blockages in her stomach to be able to treat the cancer. The surgery could only be done at certain hospitals in the United States.

Time was ticking but red tape slowed the process in getting the care Arlene Sibetang needed.

At the time, MD Anderson Cancer Center in Texas was recommended as the best option for Arlene Sibetang to receive the treatment she needed. But, MD Anderson doesn’t work with TakeCare insurance, one of Arlene’s providers. The VA denied coverage for the expense as well.

“The VA refused to pay for MD Anderson because it’s too far away. They said they were going to go with the closest one that’s qualified to do the procedure she needs and her treatment,” Layla Sibetang recalled. “The VA kept saying they were trying to find something, they kept giving us hospitals left to right every week and it failed because every surgeon that was there refused to take her because, first of all, it took a few weeks here to make an appointment for a biopsy.”

The appointment was initially scheduled a month out from local doctors realizing they had missed the tumor during surgery. While that time was cut down to two weeks, it was still too long of a wait according to Layla Sibetang.

“Every day we are crying, ... and she was still working. She works 24 hours, she’s still doing what she needs to do. Because we can’t leave off island, we don’t have $100,000 to fly to MD Anderson,” Layla Sibetang said.

It took weeks for the VA to find a doctor at Stanford University who would take on Arlene Sibetang because of her rare cancer.

“It's so rare that not anybody could do the procedure plus the radiation. They (VA) had an appointment set in December and this was in October. But the VA would only cover Stanford. They said you could go to MD Anderson but you have to pay."

She said they would have need $100,000 up front just to be seen even with a referral, it was money they didn’t have.

“We didn’t have the funds to even start treatments,” Layla Sibetang said.

Layla Sibetang did not discredit the health care provided at Stanford but stressed time was of the essence to remove the tumors.

“It took six weeks of torture in fear because we don’t even know that here she is covered in tumors and we don’t even know if she is going to make it off-island,” Layla Sibetang said.

“We did get prior authorization from the VA six weeks later to Stanford but left sooner than consultation date. Went straight to the ER from the airport,” the wife said. “Because we only had authorization for that appointment or consultation. That would have taken longer, but because I took her to the ER without prior authorization they had no choice to take her in.”

But they didn’t get there in time.

“They took her in, she’s stage 4, it’s a rare cancer. They were, like, if she came sooner they could have done the surgery,” she said.

Arlene’s surgical option was no longer viable – because by that time the cancer now covered her intestines and was near her liver.

“They wanted us to come back to Guam because they can’t do the surgery. Basically they are saying until it changes and we have a miracle and she doesn’t have a blockage, something changes then they will do the surgery but it's too late,” she said.

The VA kept them at Stanford for weeks. Then in December, the VA had Arlene Sibetang transferred to the VA hospital in Palo Alto about 10 minutes away from Stanford because it cost less.

At the time they refused to return to Guam and pushed for chemotherapy despite doctors' uncertainty that it would work.

“This is December we are doing chemo treatment, they said let’s see how her body reacts. She did four treatments every two weeks for outpatient,” she said.

For one month there were no side effects, but the treatment wasn’t working; the tumors did not shrink. They weighed the option of stronger chemotherapy treatment as they thought about what could have happened if the tumor was properly caught.

“She couldn’t do radiation, they said she can’t and that if she came sooner and if they would have known about it in March when they did her surgery, then they could have done radiation because it was small then and there wasn’t spread,” she said. “But, we can not change that.”

They decided to go with the stronger chemotherapy. It had a negative impact causing more problems with her blockage.

“She was constantly going to the hospital, she hasn’t eaten in months, she’s on a liquid diet and constantly having to do a NG2 to do a pump out of broth and jello. She can’t even stomach broth and jello so she’s been doing outpatient IV nutrition for five or six months now,” she said.

Medical complications have forced them to stop the chemo earlier this year. Arlene is now back on Guam and has been confronted with more road blocks to treatment she needs.

“The VA wasn’t going to cover her home care, they said they would cover hospice, but we are not settling for hospice, we are not giving up on her, but that’s the only thing they are willing to pay,” she said.

They had no luck with local clinics which do not have the resources to cover nutritional IV outpatient needs like she received in the states.

Layla Sibetang said only GMH and GRMC have the nutritional mix Arlene Sibetang needs.

“It took us one month in and out of the hospitals for them to approve outpatient infusion here. For one week I was bringing her in for outpatient infusion,” she said.

The outpatient infusions quickly ended according to the Layla Sibetang.

“They told us that they are not comfortable doing outpatient because there was no doctor,” she said.

They have been home for about three months, and have not been assigned a local VA provider who is capable of administering care.

For now, Arlene Sibetang is seeing her primary care doctor. They hope to find a VA provider locally that will cover medications and claims.

Arlene Sibetang filed disability claims with all supporting documents with the VA to expedite her benefits since the end of February, but to this day they are paying the full costs without help from the VA.

“It's June and still nothing is processed. We have co-payments, pay full amount for all medications, and pay full costs for home health care because her claims haven’t been expedited,” she said.

Between all the back and forth from government insurance providers, “nobody” covered any expenses up front.

“It’s inhumane to send her home and be malnourished and dehydrated … the cancer is not the biggest issue right now, she's starving because she can’t eat and you can’t live like that,” she said. “Its been one thing after another.”

She believes that everything that Arlene Sibetang has gone through is for a reason.

“Something has got to get better, I don’t think God is allowing her to go through this for nothing. We look at it spiritually and if it needs to shed light whether it's doctor’s negligence at the hospital, or it's pathologist's negligence or the VA, their process because there’s no VA Hospital here,” she said. “All this could have been prevented.”

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