Something in the wind
Former Hopi chairman talks about his bout with cancer

By Kathy Helms
Diné Bureau

Ivan Sidney sits on the porch of his childhood home in First Mesa Village. Sidney is a survivor of radiation-related cancer and has been compensated as a downwinder. [Photo courtesy of Russell Honicker]

FIRST MESA, Ariz. — In 1981, at the age of 33, Ivan Sidney became the youngest man ever to be elected chairman of the Hopi Tribe. In October 2006, during the 10th month of his third term, he was ousted following a painful alcohol-related incident in Winslow.

He makes no bones about it. It’s not something he’s proud of. But he survived.

As a matter of fact, Sidney has survived a lot of pain since his birth in 1947, but nothing quite so painful or quite as humiliating as cancer, he said. Of course, when first diagnosed several years ago, Sidney had no idea that he was one of thousands of victims known as “downwinders.”

During the era of atomic testing at Nevada Test Site, it was not uncommon for radioactive clouds to rain down poisonous trails of fallout across the Hopi Reservation.

Perhaps that accounts for what some members of the Hopi Tribe say is a high incidence of cancer, but with no definitive health studies ever having been conducted, it’s hard to say. As of April 2005, approximately 20 Hopi had been approved to receive compensation as downwinders under the Radiation Exposure and Compensation Act.

That same year, the New Mexico Tumor Registry had documented more than 250 Hopi born before July 1, 1962, with RECA-compensable cancers.

If it weren’t for the fact that Sidney’s cancer was related to radiation exposure, one might be led to believe that the illness in his family is hereditary. About 14 to 15 years ago, he watched his mother die from breast cancer. “It just spread all over her body,” he said recently. “About 10 years later, her younger brother, my uncle, died from prostate cancer. Then, prior to that, her younger sister, an aunt of mine, had a lump removed from her breast. She’s deceased now too.

“About a month and a half ago, another aunt of mine — another sister of my mother — died of cancer. She was a retired director of health care with Indian Health Service. It spread from breast cancer and went into her brain.”

In Sidney’s case, he was working at Northern Arizona University when he first became ill. “I would have very high fevers. My temp would be as high as 102, 103, and I would develop chills. I was going to the hospital here locally, in and out, in and out. I was diagnosed for many things,” he said.

“I found out that Native Americans on the reservations were supposedly provided health care through the Indian Health Service. Our new health care center is an ambulatory care facility, it’s not a hospital, so there’s limited service — there’s virtually no inpatient care,” he said. “In my particular case, cancer, Indian Health told me that’s not part of their services. In fact, it took me over two years to be diagnosed finally that I had cancer.”

After going back and forth to IHS at Hopi, Sidney became ill once again during a family trip to Flagstaff. He said he called a Hopi doctor at IHS who told him, “Ivan, we can’t help you — it’s obvious. Why don’t you go to the Flagstaff Medical Center?”

In order to do that, however, he had to have a referral from IHS. “It’s called contract health care,” Sidney said. After receiving the referral, he went to the medical center where he was immediately admitted because his temperature was dangerously high.

“I was admitted on a Friday. It took three doctors at Flagstaff Medical Center three days to tell me that I had cancer. It was behind my back, my lymph nodes. I immediately went into surgery the fourth day and immediately went into chemotherapy. It took 18 months of chemo for my doctor in Flagstaff to tell me I was infected with stubborn cells, they refer to them as T-cells, and that normal chemo would not cure me. I had stubborn cancer cells which meant, it’s over for me,” Sidney said.

The doctor told him there was a new cancer treatment, still in its early stage, but that it was only offered at the University of Arizona or Tucson. He was referred to Tucson for a blood stem cell transplant.

While in Tucson, Sidney asked the new doctor what might have caused his cancer. Once more, he was told that it was caused by radiation.

“Again I was asked, ‘Do you ever remember being exposed to radiation?’ I said no. He said, ‘Where do you live?’ I said on Hopi. He said, ‘Has that area been part of the downfall from Nevada, the nuclear testing, the uranium mining?’ I said, ‘Yes it is.’”

“I drank from our springs and lived on the farm with my grandma. I grew up the traditional way — and that’s why I brought up my mother and her brothers and sisters. All of us are dying of cancer.”

Now, he realizes that he is very lucky. While at NAU he had the foresight to take out private health insurance. “I would have died if I hadn’t had my own insurance. I just thought of all the other Hopi and Navajo who maybe don’t have insurance that probably could have been saved. I kind of feel guilty about that sometimes — that I’m alive today and somebody else isn’t,” he said.

“I’ve been to the point, lying in the hospital so sick, I remember not wanting to go to sleep because I was afraid I was going to wake up dead — die in my sleep. But I got so tired I would fall asleep, and then open my eyes and I would see the morning light coming, the sun coming in. I would say, ‘I’m alive!’

“So, every day is a good day,” he said, but he feels especially bad for Hopi children now suffering similar illnesses. “One I know of is 5 years old, a leukemia victim,” he said. “I’ve lived a good life, and I didn’t mind seeing myself maybe somehow fade away by cancer, but these young people, it’s all wrong. It shouldn’t have to happen.”

Sidney is now in remission, “but I have to live with the fact that any day it can come back — and I don’t know that I want to go through it again, especially the blood cell transplant, because I know how it is and I’d be crazy to repeat something that hurts so bad.”

Last year, when he was ousted by the Hopi Tribal Council after it was learned that he had been drunk at a motel in Winslow and had urinated in the hallway, he saw some people in the audience laughing. “That was, I felt, a real discourtesy to not only me, but other cancer victims,” he said.

“Alcohol, sadly, became a part of me because of the pain. But people couldn’t understand that. We run to those things because there is nothing for us to go to.” No one can describe the pain and no one will understand what he and other cancer victims have been subjected to unless they experience it for themselves, he said.

Now, Sidney counsels other Hopi cancer victims, some of whom helped remove him from office, telling them, “how I coped with it and what happened to me,” he said. “I am a survivor, and I’m doing everything I can to help.”

He started playing music while undergoing chemo, and later put together a country band, The Hopi Clansmen, which plays to raise funds for charitable events.

“Right after I was told I was in remission, I put together a music festival called ‘Joining Hands to Fight Cancer Through Music.’ We just finished our fourth annual. The first year, we raised $18,000. That was put into an account with the Women’s Health Program, where cancer patients can apply to get small grants to help with expenses while they’re traveling back and forth to Flagstaff for treatment.

“Every little bit helps. I used to drive myself four times every other week for chemo, all the way to Flagstaff at my own expense, and that was tough,” he said. He is also pushing for a drug and alcohol treatment center as well as a local chemotherapy center to serve Hopi and Navajo cancer patients.

“Our community needs to wake up to the fact that cancer is killing our people. Statistics tell us that it’s happening here,” he said.

“I hear about new uranium mining on Navajo. Don’t they know what’s happening to all of us?”