Former House speaker Salvatore F. DiMasi has grown frail and thin in a prison hospital in North Carolina, where he is battling a rare form of cancer that went undiagnosed for months as he was bounced from one facility to another, according to his wife, Debbie.
Just 16 months after he reported to federal prison to serve an eight-year sentence for corruption, DiMasi has lost 50 pounds, has suffered bouts of pneumonia, and has a feeding tube attached to his stomach. He sips apple sauce and pudding and cottage cheese, if he can sip at all.
DiMasi, 68, may also be facing a recurrence of the cancer in his tongue and throat despite intense radiation treatment that has left him unable to swallow solid food, his wife said.
In a rare interview at the request of the Globe, Debbie DiMasi agreed to discuss her husband’s failing health and their struggles to cope, but also her frustrations with what she called an incompetent federal prison system where he was supposed to be sent for punishment, but not to suffer like this.
“He was frustrated, trying to get help, knowing something was wrong,” Debbie DiMasi said Wednesday from her office at a suicide prevention organization in Downtown Crossing, surrounded by pictures of her and her husband when he was one of the most powerful politicians in the state. “He had spent so much time knowing this was in his body, for so long.”
And DiMasi said some of her husband’s suffering could have been avoided if prison doctors had examined him when he first reported suspicious swelling in his throat and neck.
Instead, his cancer was not diagnosed until months later — April 2012 — giving the disease time to grow and spread.
‘He had spent so much time knowing this was in his body, for so long.’
“I do think it’s important for people to know what he’s gone through,” she said. “But this is a systemic problem, so it’s more than about Sal. This is the way things happen here.”
DiMasi said she has met wives of inmates and the son of another, who described the same pains in seeing their family members go untreated: One family member said he had to seek the help of a US senator to get treatment for his father, and by then the cancer was terminal.
“It’s not right,” she said. “I never thought we’d be in this situation, but it’s been eye-opening and heart-breaking, both personally and with the other stories we’ve heard.”
The Bureau of Prisons did not respond to requests for this article, but has maintained in previous inquiries that it provides the necessary care for all inmates.
Despite Sal DiMasi’s current health, he has little hope of gaining early release from prison, based on a recent Human Rights Watch report.
The nonprofit found that the bureau asks the courts to consider “compassionate release” of sick prisoners only about two dozen times a year out of a prison population of more than 218,000.
Some of DiMasi’s former Beacon Hill allies said it is tragic that a politician who was a driving force behind the 2006 Massachusetts health care reforms that became the model for President Obama’s overhaul should suffer from poor health care.
“What a horrible, horrible irony: That the man who was hugely responsible for helping millions of people access health care would now be denied access to quality health care is extraordinarily painful and terrifically unjust,” said Arline Isaacson, cochairwoman of the Massachusetts Gay and Lesbian Caucus. “He deserves a lot better.”
Defense attorneys said the apparent failure to provide proper care for DiMasi reflects a prison system that has been overwhelmed by an increase in aging, nonviolent defendants sentenced to lengthy prison terms.
“It’s a profoundly serious problem, where federal judges impose sentences and the Bureau of Prisons implements them without any consideration of the absolute lack of medical care in the system,” said Martin Weinberg, who successfully represented one of DiMasi’s codefendants and is handling the appeal of another, lobbyist Richard McDonough, who was sentenced to seven years in prison.
Thomas R. Kiley, DiMasi’s lawyer, would not say whether he is planning any legal action against the prisons bureau. But he said that he has repeatedly in court filings sought to have DiMasi relocated closer to Massachusetts so that he could receive proper care.
“Making sure he gets the best treatment in the system is imperative,” Kiley said.
Debbie DiMasi first realized something was wrong in January 2012, just two months after her husband reported to the federal prison in Lexington, Ky.
In a visit to the prison, she noticed a lump on her husband’s neck, about the thickness of her finger.
He told her he saw a doctor about it, and was told to come back.
But within days, he was moved to another facility, then another. US Marshals eventually transferred DiMasi back to the Massachusetts area to testify before a grand jury investigating the patronagescandal within the Probation Department.
Finally, prison officials in Rhode Island ordered two biopsies for lymph nodes that had started to swell.
But, rather than give him the test results, Deborah DiMasi said, officials transferred him again and placed him in solitary confinement in a prison in Oklahoma for reasons unknown to the family, and then brought him back to the Kentucky facility in April.
“I thought it was so disgustingly cruel, I thought they were getting in the way of getting him help,” she said.
When doctors finally confirmed that Sal DiMasi had advanced — stage 4 — cancer, his wife said she had to deliver the news. At the Kentucky prison, in a visiting room with plastic chairs, and surrounded by other families, where they could do little more than hold hands, Debbie DiMasi told her husband he had cancer in his tongue and lymph nodes, a disease that can be fatal if not diagnosed and treated early.
DiMasi, who underwent a bilateral mastectomy for cancer in 2010, said she told her husband that, through all their struggles, they had hope. She had only years earlier watched her father die from Lou Gehrig’s disease. But they had hope for treatment.
“I told him, ‘I’ll take that,’ and he said, ‘you’re right,” Debbie DiMasi said. “I think that’s something he holds on to.”
Sal DiMasi, who received the longest sentence ever for a Massachusetts elected official, has maintained his innocence and an appeals court is considering his request for a new trial. Meanwhile, with the loss of DiMasi’s income, a judge last year approved the foreclosure of the family’s condo on Commercial Street in the North End.
Debbie DiMasi said she has taken her struggles in strides. Last July, inspired by a history of suicides in her family, she began working for a suicide prevention organization. She is thankful for the support of friends and family and living by the philosophy that, “Life is hard, but I think it’s how you get through it.”
She said she has tried to convey that to her husband, who needs the mental support as much as anything. In June, he was finally transferred to a medical facility in Butner, N.C., after a doctor complained of his lack of care, his wife said.
There, he underwent three weeks of initial chemotherapy to reduce the tumors, followed by seven weeks of more intensive treatment because the cancer had grown so much.
But the treatment caused a buildup of fluids in his throat, which his wife said was later determined to be undiagnosed lymphedema, and his esophagus started to close. Doctors were able to reopen his airway weeks later, but it repeatedly closed, she said. Several times, DiMasi aspirated into his lungs because of the narrowed esophagus, causing pneumonia, she said.
Debbie DiMasi said the family couldn’t visit him again until October, because he was too weak to come to the visiting room. They couldn’t speak, either, because DiMasi couldn’t talk on the phone.
“I felt terrible for him,” said his wife, who said she started sending him directions on how to swallow again, and how to massage the fluid from his neck area, something she figured the prison should have done.
DiMasi underwent a PET scan in December to look for traces of the cancer, but it was inconclusive.
The scan did detect some potentially cancerous cells in his mouth but the doctors said that could also be a result of swelling.
DiMasi had hoped that he would have undergone a new scan by now. He told his wife he is not due for the procedure until April.Milton J. Valencia can be reached at MValencia@globe.com. Follow him on Twitter @MiltonValencia.