In case you missed it
The Oklahoman ran this Associated Press story on Wednesday:
Experimental cancer treatments get Medicare’s quiet approval
BY THE ASSOCIATED PRESS
WASHINGTON — Medicare has quietly expanded its coverage for cancer drugs to include some treatments that haven’t gotten the Food and Drug Administration’s full seal of approval.
The change took effect in the fall. It means that doctors and patients seeking Medicare reimbursements for certain novel treatments won’t have to negotiate with the billing department for payment. But it’s also certain to increase Medicare spending, since cancer medications often cost thousands of dollars a month.
“In some instances … the medical community may have scientific evidence that supports using a drug to treat a disease even if the drug’s FDA-approved label does not include those clinical conditions,” Medicare explained in a news release describing the policy.
Cancer doctors strongly supported Medicare’s decision.
“Basically, what this means is that there will be faster coverage of evidence-based and appropriate cancer medications for patients,” said Dr. Joseph Bailes, a spokesman for the American Society of Clinical Oncology. “It will reduce the hassle factor.”
Still working
Never fear. I’m still here.
I’m buried in my first draft of Chapter Two. Writing it has taken me away from the blog a bit, but I think it’s a worthy trade-off. You get great blog items from Jim and Charlotte, while I work on writing a passable story.
Hope you’ll stick with me.
The view from Houston
HOUSTON — I teared up a little today.
So did Jim. And LeAnn.
Jim had an appointment at the M.D. Anderson cancer hospital here. Actually, a couple of them. Yesterday, I accompanied him as he had blood work done and watched from the technician’s consoles as he got a chest X-ray and a CT scan. I saw Jim from the inside out, including the telltale spots and shadows of his cancer.
Jim has been dreading this trip to Houston. In recent weeks, he’s been feeling pain in his lower back, especially toward the right side. It shows up every day and hurts worse when he strains or lifts heavy objects. He’s gotten used to evaluating the signals his body sends him, and usually if something new occurs it’s an indication to him that his condition is worsening.
“I’m not expecting any good news,” he said repeatedly, both back home in Oklahoma and here in Texas.
So we were all bracing for the worst when he met today with Dr. Scott Kopetz. Jim and LeAnn sat on one side of a small examination room, the type you find at pretty much every medical facility in the country. Examination table. Sink. Rolling stool. Desk. Posters on the walls.
John Clanton and I huddled on the other side of the room, trying (in vain) to be unobtrusive as Jim and LeAnn nervously awaited the doctor’s arrival. John snapped photographs and operated a video camera. My audio recorder sat on the desk.
Dr. Kopetz bustled in bristling with efficiency and confidence. He ignored John and me, for the most part, and focused on Jim, asking questions about Jim’s condition and checking his breathing and lower back.
Then he pulled out the documentation from Jim’s tests.
I think we all took a breath. This was it: the big moment. How bad would it be? Had the cancer spread? Were the tumors bigger? Would Jim still have months left or only weeks? How much worse could it possibly get?
But Dr. Kopetz said something utterly unexpected.
Two words.
“Good news.”
Jim’s cancer hadn’t grown. It hadn’t shrunk, either, but it hadn’t gotten worse. The chemo was working; the cancer had stabilized.
It wasn’t miraculous, fantastic, stupendously amazing news. It wasn’t a cure. It wasn’t remission.
Under the circumstances, though, it was about the best news possible … and it was more than good enough.
LeAnn cried quietly as the words struck home — the first time, I think, I’ve ever seen her tears. Jim’s chin quivered.
Watching them, tears filled my eyes, too. I couldn’t help it. LeAnn hides her fear so well, but it was there, evident in the relieved smile that stretched across her face even as she cried. And Jim looked somehow stunned, as if he couldn’t comprehend hearing something that didn’t speak of tragedy.
For once, in this vast stretch of Job-like misery, they’d caught a break. And God, do they deserve it.
Jim will continue the chemo. He won’t come back here for three months. And if things continue like this, he’ll be alive when Maddye graduates from high school in May. Alive and well enough to watch her walk across the stage, to hug her and congratulate her, to see her throw her cap into the air. He’ll be there.
“Good news,” Dr. Kopetz said again a little while later.
Jim replied with a smile: “That’s one in a row.”
Here’s hoping there’s more.
Sorry
Sorry I haven’t posted anything recently. An impacted wisdom tooth got infected and left me flat on my back. I think I’m finally on the mend, although I have an unpleasant date with an oral surgeon soon.
Dealing with this tooth issue has had me thinking about Jim and his family. (Of course, most things do these days.) I was worrying about the unexpected expenses of dental work and oral surgery and thinking about how much this problem has thrown my schedule out of whack when it occurred to me that the Chastains constantly have stuff like that to worry about.
How do you live anything resembling a normal life under the constant threat of massive medical bills? How do you make plans when you don’t know where you’ll be in a week or a month?
Welcome
I suspect that many new readers will be joining us in a couple of days, when the first chapter in this ongoing series appears in The Oklahoman.
For those newcomers … welcome! I hope you’ll find something here or in the other “Life is real” blogs that touches you, makes you laugh or educates you a little about cancer, life and love.
Here are a few things that might help you get the most of these blogs:
1) Start at the beginning. Go back to the first blog post (there aren’t that many) and read the rest in chronological order. That’ll get you all caught up on everything so far.
2) If you’re looking for the rest of the post that was excerpted in The Oklahoman, it’s the one titled “Why.” (You can find it under “Recent Posts” on the right side of the screen.)
3) None of this would be happening if not for Jim Chastain, his wife LeAnn and their teenaged children, Maddye and Ford. They’ve been kind enough to invite us into their lives as they face some of the scariest stuff possible, so please play nice. I encourage you to post comments on my blog and the others, but remarks that are hurtful toward the Chastains will be removed.
4) Check out some of the links on the main “Life is real” page. You can visit Jim’s personal Web site, listen to Ford’s music, buy Jim’s memoir and poetry books, read additional stories about cancer and more.
That’s about it. Welcome to the site. I hope you’ll come back often.
Sick and tired
Jim had chemo on Tuesday. I went to see him a day later.
He was pretty much wiped out, not as sick as he was the last time I checked on him after a chemo treatment, but not well, either. He’d left the OU Physicians building, stopped at a fast food joint to eat some French fries and gone home to collapse into bed.
That’s where he was when I saw him yesterday. Dressed in pajamas, his hair tousled, he lay on his right side — a fairly unusual move for him. With no right arm or shoulder, it hurts to put weight on his right side. He usually sleeps on his back (which he couldn’t do because the chemo causes acid reflux) or on his left side (which he couldn’t do because he’d strained his back or arm). He chose the least uncomfortable option.
Jim hadn’t really eaten since those French fries a day before. He’d sipped some Sprite on Tuesday and some orange juice and water on Wednesday. Otherwise, nothing. Those toxic chemicals in his system — the only things keeping his cancer at bay — had left him exhausted. His coat still lay on the bed where he’d tossed it a day before.
At least this time he’d managed to avoid vomiting. A few weeks ago, a chemo treatment spawned intense nausea and left him sprawled on the bathroom floor, so weak he could scarcely move. He’d sent his daughter a text message: “911.” She and the rest of his family came in and toted him into bed.
Seeing Jim like this and hearing tales of past chemo reactions somehow spotlights how insane cancer is. Cells rebel and replicate, striving to live and grow, but in the process, they kill their hosts. To fight back, patients endure torturous treatments whose origins defy understanding. Who thinks of fighting a disease by irradiating a patient? How do you come up with the idea of poisoning a person to try to save them? The concepts sound positively medieval.
In fact, chemo’s origins are much more recent, if no less barbaric. Chemotherapy was born in the fiery hell of the worst battles in human history. Chemotherapy’s progenitor was a caustic chemical weapon known as mustard gas.
According to the American Cancer Society: “The first drug used for cancer chemotherapy did not start out as a medicine. Mustard gas was used as a chemical warfare agent during World War I and was studied further during World War II. During a military operation in World War II, a group of people were accidentally exposed to mustard gas and were later found to have very low white blood cell counts. Doctors reasoned that an agent that damaged the rapidly growing white blood cells might have a similar effect on cancer. Therefore, in the 1940s, several patients with advanced lymphomas (cancers of certain white blood cells) were given the drug by vein, rather than by breathing the irritating gas. Their improvement, although temporary, was remarkable. That experience led researchers to look for other substances that might have similar effects against cancer. As a result, many other drugs have been developed.”
Who knew?
First chapter should be out this Sunday
I can never guarantee that a story will run on a certain date — this is a newspaper, after all, and you never know when a major news event will cause a feature to be postponed — but the plan is for Chapter One in the Chastains’ saga to appear on Jan 11.
If you like it, thank Jim, LeAnn, Maddye, Ford and their extended family for giving me so much access to their lives. If you hate it, blame me.
This first story centers on Jim’s cancer battle. Later stories, which should appear about once a month, will focus on his biography, his family, his writing and more. I hope you’ll stick with us throughout the series and post comments on the blogs: mine, Jim’s and Charlotte Lankard’s. Photographer and videographer John Clanton would welcome your comments, as well. You can reach him at jclanton@opubco.com.
Why
Stepping out of the shadows is one of the toughest things for old-school print journalists to do. In recent years, we’ve had to do it, at least to an extent. The industry has changed, and we can’t hide anymore. You see us on TV sometimes. We appear in videos on our Web site. We blog. For years, my bosses wanted my picture to appear online with my Cold Case series; I successfully avoided that, but now you can see my ugly mug on the Life Is Real site.
Have you read the section of this blog labeled “About Ken Raymond”? There’s not much information there, but it does include this sentence: “Cancer is his greatest fear.”
Ever since I accepted this assignment, I’ve debated with myself if I should explain why (beyond the obvious reasons) cancer is so scary to me — and why I nearly turned this story down. Today I came to this site and found a message from Sue Hale, formerly The Oklahoman’s executive editor. In her written comment, Sue talked about how readers rarely see journalists as people and don’t realize that the things we write about affect us.
That was the nudge I needed to step a little further out into the light.
So why do I fear cancer?
1) When I was 19 years old, my father began complaining of backaches and nausea. He’d come home from work and collapse onto the couch, lying on heating pads and beneath heat lamps. He was a big guy, 6′2″ and probably 250 pounds, and he’d been a blue collar worker his whole life. He was tough and strong, but now he hurt too badly to do much of anything. At first, we thought my dad, who was also named Ken, was being a baby. Lots of people have backaches, and the doctor couldn’t find any explanation for why he was incapacitated. Probably a muscle strain. Maybe a pinched nerve. But the pain continued. In the fall, when I had begun my sophomore year of college and football season had returned, a specialist finally realized that something was seriously wrong with my dad. It’s been a long time now, and I don’t remember exactly how the truth came out — an X-ray? an MRI? — but they discovered that my father had a mass growing inside of him. A few days later, he entered the hospital for exploratory surgery. My whole family — including my mother, brother, three sisters and their families — gathered with our pastor in a waiting room at a Pennsylvania hospital. We made unfunny jokes and tried to keep our spirits up, but I was strung so tight I could hear a high-pitched whine in my ears, and if I’d tried to smile, I think my face would’ve cracked. The operation dragged on longer than expected. After a few hours, my family was summoned into a long hallway. We stood along the walls. A grim-faced surgeon approached us. My father had pancreatic cancer, he said. At the time, the mortality rate was somewhere around 99 percent, and my dad’s cancer had progressed so far that there was no chance of survival. I have exactly two memories of that day that remain crystal clear in my head, as if they were somehow captured and pressed between glass. One of them will remain private. Here is the other: In that moment, when the doctor told us my dad would die at age 53, time slowed, and I watched my family members collapse like dominoes into the arms of those nearest them. My mother fell sobbing into the pastor’s embrace, and my siblings each reached for their spouses. I was the youngest, and I was alone. “That’s it, then,” I thought. “I have to be the strong one.” And I never let myself cry through the months ahead — not when I went alone into my father’s hospital room and told him he was dying, not when he suffered through every experimental treatment he could find, not as he wasted away to a jaundiced skeleton who could scarcely move, not when his voice became a scratchy rasp, not when he lost his mind and not when, two months later, he died on Oct. 28, 1989. He was buried on Halloween.
2) In April 2001, my brother called me at The Oklahoman to tell me to come back to Pennsylvania. He’d stopped in to visit our mother and found her incoherent and unable to get out of bed. I can’t recall if he knew then that she had cancer, but I know he said she was in bad shape and was asking for me. This time the tears came in a flood. Three of my coworkers, including the woman I would eventually marry, surrounded me as I tried to find a way home. I wasn’t alone. The paper booked me a plane ticket, and soon I was back home. My siblings were steadfast in their refusal to believe our mom could die, but the second I saw her, I knew. Months had passed since the last time I’d seen her, and in that interval, she had shrunk, and I could see in her the same thing I saw in my father so many years before. My mother and I … we’d always been close, but after dad’s death, we’d grown even closer. She was my best friend, and even though I lived more than 1,000 miles away, we talked often and about everything. Now this. I wasn’t ready. My mother had breast and lung cancer. The doctors thought it originated in her breasts and spread into her lungs. They tried to help her, but as with my father, the cancer was too advanced. She was sent to a nursing home to die, and she did, just three weeks after I’d returned home. Again, I have two clear memories. Again, I will share only one. My mother had a fat housecat named Snit. She’d named it that because the cat didn’t like many people and often seemed annoyed, as if she was walking around “in a snit.” The cat was a kitten when my father was still alive, and we had a photograph of my dad sitting at the kitchen table, smiling brightly with Snit perched atop his head. Snit loved only three people in her life: my dad, my mom and me. When mom was at the nursing home, she kept saying that she missed Snit, that she wanted to see her cat again, so I arranged with the staff there to surprise mom by bringing Snit for a visit. Mom was delighted, and Snit jumped into bed with her, curled up beside her and went to sleep. The visit lasted only a few hours, and then I had to reclaim the cat and take her back to my mother’s house. Snit didn’t want to leave. She hid under furniture and hissed at my siblings when they tried to capture her. Efforts to corral her dragged on for 10 minutes, as my mother sobbed. “I’m not ready to leave my baby,” she said repeatedly, and as my attempted act of kindness turned into a tragedy, the true meaning of my mother’s words fell on the room, making it small and somehow airless. Everyone there knew that she wasn’t really talking about the cat. She was talking about me and my siblings, crying out her pain and sorrow and fear in a way she wasn’t willing to do directly. Me taking her cat away had become a metaphor for everything she was losing, everything cancer was stealing from her, and I cried the whole way home. Mom died a few days later, less than a month shy of her 65th birthday. Snit came to live with me. She was an old cat, and several months later, her kidneys began to fail. The vet said the most merciful thing would be to put her to sleep. I spent 15 minutes alone with Snit in an examination room, petting her, telling her I loved her, saying goodbye. Then a vet tech took her away. Snit had become a metaphor for me, too, and losing her was like losing my mother all over again.
3) My wife’s grandmother, a spunky 92-year-old named Irene, is dying of exactly the same sort of cancer as Jim. It’s growing in her colon and liver. Like Jim, she refuses to dwell on it. Unlike him, she has declined treatment for it. Chemo took too much away from her, so she discontinued it. I saw her on Christmas. She looks good. She’s still funny. She’s a tough old girl, the sort who doesn’t believe you should have your mouth numbed just to get a filling, and she’s endured a lot. My wife is close to Irene (who famously grabbed my butt during a wedding photo), and I love her, too. I was worried about taking on this assignment while my wife is facing the loss of her grandmother, but she urged me to do it.
4) In 2008, I had my own cancer scare. I won’t go into details, but it was still fresh when my editors approached me with this assignment.
There you have it. More than you wanted to know and vastly more than I thought I would ever share. Cancer is the worst thing I know, and I live in terror that after taking so much from us already, it will come for the rest of my family, too.
