`Happy birthday,’ but sorry…

Castelli should know about the value of protecting classified data

By Ken Tingley

Gillian celebrated her 64th birthday with an appointment at her oncologist last week.

When the doctor entered the room, he said, “Happy Birthday! Sorry I have to give you bad news.”  He told her he was going to stop the latest round of chemotherapy because one of her tumors had grown.

He suggested there might be a cancer trial in Buffalo. He did not say much else.

On her birthday.

I was still in Texas supervising the movers for my son’s move to New Orleans, so I suspect Gillian felt pretty alone. Maybe even abandoned.

It was 11 years ago next month she was diagnosed with advanced ovarian cancer. The first oncologist in Albany would not take her insurance so we found another doctor in Burlington, Vermont. She had surgery three days later and we spent the next six months regularly driving the two hours over bumpy backroads to Burlington for chemotherapy. We left early in the morning and often did not return until after dark.

After that, she was clean of the cancer for nearly five years, then it came back. She began treatment again and beat it back again, and again, and again.

And she made it all seem like a flu shot.

Then, she developed a tolerance for the chemo drug that led to an allergic reaction. She had to find a new treatment

She began taking tumor inhibitors which didn’t have as many nasty side affects and the tumors got smaller. Then, they added in maintenance chemotherapy to keep the tumors in check.

Along the way, it was decided she needed to take magnesium sulfate infusions to keep her blood pressure in check and her body functioning. At first, she did that at the hospital, but that was going to cost nearly $500 a month in copays. More importantly, it was going to disrupt her routine by forcing her to sit in the hospital for 12 hours a week.

Instead, she learned how to do the infusions herself by accessing her own port. She puts the bag of magnesium in a backpack and goes about her daily routine at home.

Throw a curve ball at this woman and she bats it out of the park.

Cancer is bad enough, but it is the other indignities that make it unbearable.

When you go for chemotherapy, you are charged a $40 copay for chemotherapy, then another $40 for a two-minute visit with the doctor. I call it the “double dip.” Even the people at the hospital seemed confused about what to charge. The hospital recently sent my wife to collection when one of those $40 copays did not get paid.

Over $40.

In the spring, my wife’s insurance changed its name. She is regularly on the phone battling with the drug company about deliveries of the cancer drug, often being passed from one person to the next. At other times, it is the insurance company.

Someone is always dropping the ball. On Friday, she was on the phone for over an hour be switched from one person to the next. Finally, she was assured the medication would arrive on Saturday.

We were still waiting on Sunday and nobody ever seems to care.

We have it better than most. We have good insurance, my wife is a nurse who can handle doing basic medical prosecutes and we have lots of experience in pushing back on  insurance companies. While talking to one person on the phone, she was told that her cancer drug would carry a $7,000 copay a month once she goes on Medicare.

Finally, after one trying series of phone calls last week, I watched as she burst into tears.

“I’m tired of this,” she said simply. “I don’t want to do it anymore.”

That’s the wear and tear that people don’t understand about cancer. It’s not always the the physical demands that get you, but the back and forth with doctors and drug companies and the indignity of being sent to collection by your local hospital.

The next day, Gillian was back infusing again. She talked to the folks in Buffalo about getting into a cancer trial there. A biopsy was scheduled to see if it was a differently type of cancer. It was just another day at the office for her.

I picked up a birthday cake for her Saturday. There was no damn way she was going to define her birthday by what the doctor said in his office.

I lit one candle on the cake and we sang “Happy Birthday” together.

Classified information

Matt Castelli, one of the Democrats running against Rep. Elise Stefanik, posted a statement last week about Stefanik’s attack on the FBI. Since Castelli used to work with the CIA, I believe he would have insight into Trump’s mishandling of classified data.

Here is part of what he said:

“As a former CIA officer, I know the grave harm that the mishandling and disclosure of highly classified information can do to our national security. But rather than concern herself with the safety of our country, Congresswoman Stefanik has attacked federal law enforcement professionals and spread wild conspiracy theories and lies, putting targets on the backs of  the brave men and women who risk their lives protecting us.”

Less attention better

Finally, at the New Orleans International Airport last week, I made it through the “millimeter wave scanner” without an intimate pat down of my private area.

The machine did find a suspicious area on my right shoulder, but since I was wearing just a short sleeve T-shirt, it was clear there was nothing there.

I told my wife I had to remember the underwear I was wearing for next time.

Mark your calendar

My second book - The Last American Newspaper - has gone to the printer and should be out next month.

I hope you will mark your calendar for Thursday, Nov. 10 when WAMC-Radio Roundtable host Joe Donahue will join me at Battenkill Books in Cambridge to talk about the new book.

I will also be appearing at the Saratoga Book Festival Saturday, Oct. 22 - along with my former colleagues Will Doolittle and Mark Mahoney - for a panel discussion about community journalism with Donahue hosting that as well. That is scheduled for 9:30 a.m. at Cafe Lena.

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A Worried Citizen @ThePubliusUSA

Florida bans the Pulitzer Prize winning novel “To Kill a Mockingbird” from its schools. When I was kid, this book was on our required reading list and triggered my interest in the law.