PanCAN June 2021

Guest Author & Judy Blume

Editor’s note: Acclaimed author Judy Blume is sharing today’s story with you, which she wrote about her husband George’s pancreatic cancer diagnosis and treatment. Blume has published 29 books including “Are You There God? It’s Me, Margaret,” which is currently being made into a feature film, “Tales of a Fourth Grade Nothing,” “Forever” and four New York Times bestsellers, most recently, “In the Unlikely Event.”

Special request to all readers: If any portions of this story are shared, please reference and link to PanCAN as the original source.

Chapter One – Diagnosis

It was date night, that Saturday in November 2018. George was out on the balcony (we live in Key West) when I came close for a cuddle and saw that he had turned yellow. I mean, seriously yellow. His face, his chest and arms, even the whites of his eyes.

“George, you’re yellow!”

“Yeah, yeah,” he said.

“I’m calling the doctor,” I told him.

“Don’t,” he said. “I’ll go Monday.  I feel fine.”

I didn’t think so. For a few days he hadn’t felt hungry. He got angry if I mentioned it. What is it with guys, even the smartest guys, who can’t admit something isn’t right? But this – no, I wasn’t waiting. I called our local doctor and all the time George kept saying, Tell him I’ll come in on Monday. The doctor asked to speak to George. He told him this could be life threatening and he was to go to the ER right away. That got George’s attention. I had no way of knowing until then that his urine had turned brown and his stool was pale and what they call floaters.

We jumped in the car and headed for the ER. Saturday night at the local hospital’s ER isn’t somewhere you want to be but they had a bed for George. The medical staff didn’t know what was wrong. They suspected a gall stone blocking the bile duct. They didn’t have anyone on site who could do a proper scan that night. I called my cousin Seth, a G.I. specialist at Baptist Hospital in Miami. He spoke with the doctor at the ER. We needed to get to Miami. George thought that meant he’d be medevacked in the helicopter (an idea he liked) but he wasn’t deemed sick enough.

He had no fever. No symptoms other than painless jaundice, an expression we would hear a lot in the coming days. So an ambulance was called. I was permitted to ride in the front passenger seat. It’s a three-hour trip to Miami, even in an ambulance in the middle of the night. An EMT was with George in the back. Again, George claimed he felt fine, that he enjoyed the ride. We arrived at Baptist’s ER at 3 a.m. and were put in a room with a hospital bed.

After preliminary tests – blood and chest x-ray – George slept. He can sleep anywhere, anytime.  I sat in a chair, bedside, covered in hospital blankets. I was freezing cold. My feet turned deep purplish blue from Raynaud’s. I’d forgotten to ask for socks. I think I was numb, not just from the cold.

Around 6:30 the next morning Cousin Seth got to the hospital. I don’t remember everything from that day, only that George had two scans. The first was without contrast and didn’t show enough. By midafternoon he’d had a second and had been admitted to the hospital. He had a small room with a big window looking out to a concrete slab where a large dead bird lay. I tried not to look but couldn’t help myself. Hours later I asked if the bird could be removed.

By late afternoon Seth gave us the news. You don’t have a gall stone, he said.  But you do have pancreatic cancer.

Seth thought George was a candidate for Whipple surgery – hopeful. I was struck by how kind Seth was delivering such news, but I don’t think this really hit us until later. I went into action mode (because that’s what I do). I emailed my breast radiologist in New York, an empathetic person who is married to a physician at Memorial Sloan Kettering Cancer Center (MSK). An answer came back quickly with the name of a surgeon. An appointment was set up for us on Tuesday afternoon. We also contacted our primary care physician in New York, who is a family friend, someone who has helped us make decisions through some tough times. (George had prostate cancer six years ago. I had early breast cancer.). He recommended seeing a surgeon at NewYork-Presbyterian Hospital. We were able to schedule an appointment with him on Wednesday.

The following day, still in Miami, George had a procedure to stent his blocked bile duct, making it possible to travel. That night I went to a hotel near the hospital for a few hours of sleep. I know myself well enough to know that without sleep I’d crash, get sick and be useless through whatever was coming.  That’s when it hit me. That’s when I cried. George told me the next morning that he’d had a cry too. We held each other. Two of our friends had lost husbands to pancreatic cancer within a few months after diagnosis and one of my son’s close friends had died of it after trying every treatment available. We didn’t know of anyone who had survived except (at that time) Ruth Bader Ginsburg. When she and George were both law professors at Columbia they knew each other, but he didn’t get in touch.

At that point I had it in my head that every minute counted. When we landed in New York on Tuesday, we took an Uber directly to MSK and met with the surgeon there. Dr. J was a no bullshit guy. He gave it to us straight. He ordered another scan with contrast (all surgeons want their own scans by their own teams.) He agreed that George was a candidate for Whipple surgery. That would be followed by six months of chemo.

Pancreatic cancer likes to come back, he said. Another phrase we heard often. The surgery is complicated, recovery would be rough, eight days in the hospital.

The second opinion surgeon said pretty much the same things. It was up to George to choose and he decided on Dr. J at MSK because he’d had surgery for prostate cancer there, went home the next day, and walked to the shoe store. If he thought this was going to be anything like that, he was wrong.

George developed a light head cold and Dr. J said we’d wait a week before surgery. It won’t make any difference, he promised. He gave him meds for the itching caused by the jaundice. We heard again and again how lucky he was to have developed painless jaundice, which allows pancreas cancer to be caught early. And I know how lucky we were to have connections to doctors and hospitals.  At the time we didn’t know about PanCAN and the free services and support they offer patients and families. I wish we had.

George’s daughter Amanda flew in from New Mexico to be with us for the surgery. She wrote a letter to Dr. J about George’s accomplishments as a man, a human being, as a father – especially as a father. She thought he should know about his patient.

I was anxious on the day of surgery but George went into an altered state. How can I explain it? He accepts that he has no control over what’s going to happen and he relaxes. Que será, será. I’m just the opposite.

Dr. J explained that they would first go in laparoscopically to determine if they could do the Whipple. If they couldn’t he would see us very soon.

Saying goodbye, I love you, as they wheeled George away, was hard. Amanda and I clung to each other.  Then the waiting began. After three hours we were called to a Family Room. We were devastated. We’d read it takes six hours, on average, for a Whipple. We knew what kind of news was given out in Family Rooms.

When Dr. J came in, we didn’t understand until we asked, then asked again. You mean the surgery is over? Dr. J looked at us as if we were from another planet. The surgery was over, George was doing well, and Dr. J had been able to do a successful Whipple. He didn’t have to touch the stomach. The cancer hadn’t spread. It was caught early. Amanda and I cried from relief.

That was the beginning of the hardest eight days. We’d done our research on the Whipple and Dr. J had told us what to expect. But knowing and experiencing are different. With it all, George was up and walking the next day, not by himself and not easily, but he did it. After that, Amanda and I walked him up and down the hallways four times a day. Dr. J said the goal was to walk a mile before he could be discharged. We hired an “overnight companion,” an idea that tickled all of us. It was suggested to me when I asked about private duty nurses, who were not permitted on Dr. J’s floor. Having an overnight companion was unnecessary (the nursing staff is excellent) but knowing someone was there with him made me feel better and allowed me to get some sleep.

I called the hospital every morning before 7, when the overnight companion would leave, to find out what kind of night he’d had. One morning she said it was very bad. She put George on the phone to tell me he’d screamed aloud from the pain. The on-duty staff didn’t know what was causing the pain. I rushed to the hospital. A scan had been ordered, hoping that would give the medical staff the info they needed.

While sitting in the waiting section of the scan area I first learned of PanCAN from a TV show about the organization. I was glued to the screen and so impressed by what I saw and heard I jotted down notes as fast as I could. An organization just for us – patients with pancreatic cancer and the families and friends who loved them. There was information. There was hope! That was the main thing. How quickly we transitioned from hearing the worst news to thinking ahead.

I’m not sure we ever found out what was causing the extreme pain. Maybe gas. Maybe something else.   But eight days after the surgery George was coming home. I’d rented a big tilt back chair, similar to the one he had in his hospital room. He wasn’t supposed to spend daytime hours in bed. It was a slow but steady recovery. My daughter traveled to New York for several days to prepare soups, smoothies, anything to tempt him. She’s a good cook but it was tough. He had no appetite, though he tried.

Because we could afford to hire helpers, we did. I didn’t feel strong enough to care for him on my own.  He needed help getting to the bathroom, showering, dressing. He was taking a lot of meds, including the enzymes he will take with food for the rest of his life.

Finally, we ventured outside for the first time. (We’d been walking laps in the lobby of the apartment building). It was very cold by then, December, and it was difficult for him to walk the few blocks to the new bookstore he wanted to see. But he made it there and back. Then he slept for the rest of the day.

You have to know this about George – he’s not a complainer. He may have been 81 (so was I) but he was in excellent physical shape, a former runner, energetic, lively, interested in everything. Now he was tired. He’d lost 20 pounds, which put him at 138. Our neighbor brought him old comedy tapes to play on TV while he sat in his chair. The tapes made him laugh. This was good.

Dr. J told us he was too weak to start chemotherapy. He suggested he start after the holidays. We saw three oncologists in N.Y. at three different hospitals. I took notes as we listened to each one because it’s not easy to decide which protocol you’re going to have. There will be a lot of decisions to make along the way. Doctors, treatments, hospitals. Who will make these decisions or help you make them?  This is where PanCAN can really help, whether or not you have connections. I wish we’d known about them sooner. Especially at this time when it may be hard to focus, we need all the professional help we can get.

It’s not about what happened to your friend’s uncle during his treatment. It’s not about George’s experience. Each case is different. Each tumor is different. Treatment has to do with your tumor, your age, your physical condition, what’s right for you.

All the oncologists had a preferred treatment in mind, the latest chemo. George, who loves data, was impressed by the studies. But they also told us about other treatments to consider. Decisions and more decisions. George surprised me when he asked Dr. O, the oncologist at MSK, if he could have chemo closer to home, in Miami. She recommended an oncologist at Sylvester Comprehensive Cancer Center, a part of University of Miami. An appointment was set up for January.

All our kids came to Key West for the holidays. They took over the kitchen, making wonderful meals, trying and sometimes succeeding in tempting George. Amanda walked with him every morning. But George was not himself. The cheerful, optimistic, energetic, funny person we all knew and loved was quiet, tired, probably depressed (who could blame him?). None of us missed the change. None of us knew what was to come. It was a bittersweet week.

Right before we left for Miami we ran into an old friend who was visiting Key West. He’d been treated for cancer for years. Yet he looked good, strong, and was on his bike. When we told him George was about to start chemo he said, It’s not your parents’ chemo. Things have improved. You’ll get through this. 

I think that was the best thing anyone said to us.

Chapter Two – Chemo

On the day we met Dr. H, who would be George’s oncologist at Sylvester, he came into the room – tall, thin, handsome, young – and made a case, based on George’s age and tumor pathology, for an older chemo treatment, GemCap. He showed us various charts and handed us reading material. Cousin Seth also urged George to opt for the GemCap – an infusion of gemcitabine weekly, for three out of four weeks, then a week off, accompanied by an oral chemo drug, capecitabine, twice daily, also three weeks on, one week off. We had heard about this protocol from the oncologists we’d consulted in N.Y.  It wasn’t their first choice, but it was one of the choices. George opted to go with it.

An appointment was scheduled to have a port implanted. We had decided we needed to stay in Miami for the three weeks of treatment and hoped to go home to Key West for a week each month. This turned out to be a very important decision. Dr. H had said from the start, You need to be near a major medical center for certain protocols. Even though George wasn’t having the most aggressive treatment, we were lucky to be near a major medical center when things didn’t go well.

There was a small park outside the building where we were staying and every morning we walked, usually a mile and a half, and slowly. Almost every evening George wanted ice cream. Like a pregnant woman, he had food cravings, and sometimes couldn’t eat a food he’d previously enjoyed. We went to the medical marijuana shop and he stocked up.

There were plenty of ups and downs. He was hospitalized twice, once with bacteremia/sepsis, a serious blood infection. I called Amanda as I’d promised to do it things took a turn for the worse. She was on a plane the next day and immediately, George was cheered. This was in mid-February. He spent a week in the hospital. His port was suspected of being the infection site and it was removed, but it was clean. At first they tried to continue the infusions through his veins, but he burned so badly they had to implant another port. He still complains that his “great veins” were wrecked by the chemo.

Sometimes, the day after chemo he said it felt like a war was going on inside his body. Sometimes, the day after, he was so up we joked that instead of a walk around the park he was going to swim to Ft. Lauderdale and bike back. This was from the steroid he was given, along with anti-nausea medicines before chemo. Medical marijuana helped with his appetite, pain and relaxed him.

Half-way through the six months we had our week off and he wanted to participate in the Key West St. Patrick’s Day 3K run/walk. I went with him. We wore green tutus.  That was the best he’d felt since treatment began and he wouldn’t feel this good again for months.

On the day of his final chemo we wore T-shirts spelling out End of Chemo in purple letters. We took photos with Dr. H, who had become very dear to us. We loved his humor, his honesty, his wise care. He and his staff could not have been more kind or helpful. That day we celebrated with lunch at a Miami Beach restaurant.

The next morning George was sick, as sick as I’d seen him since the bacteremia. He was admitted to the hospital and put on IV antibiotics. I called Amanda again. She was already on her way to Key West to celebrate with us but was able to change her flight and get to Miami that evening. He was hospitalized for six days. Cholangitis – an infection around the bile duct – was suspected. He also had a blood clot in his neck. We were all amazed that he recovered from these setbacks so quickly. The magic of antibiotics. (And maybe the magic of George?)

Our grandson was going to be married in Boston in early September. Our goal was to be there. My goal was to dance until I dropped. We made it, and I did.

Now it’s June, 2021. We just celebrated George’s 84th birthday. We’ve made it through the pandemic. We’re fully vaccinated and have started back to work at our bookstore. We try to walk two miles every day, as we have for the past year. We’re also riding our bikes to the store. Maybe George doesn’t have the stamina he once did, but neither do I. He falls asleep easily (lucky him!). He’s gained back 12 of the lost 20 pounds. He probably won’t gain any more. His scans are clear and instead of every three months, we’ve graduated to every four.

I still get what Dr. H calls scanxiety before every scan. Yet most days I forget he was sick. I swore I’d never forget, that I’d remember all the details – but if I didn’t have the notebooks I kept I wouldn’t be able to share his story with you.

The only thing to remember is, there is hope! We’re two and a half years from that date night when it all began. People run into him and can’t believe he’s okay. That he looks so good. He still wants ice cream most nights. And he’s just as enthusiastic about Date Nights.

We know we are very lucky. And that many aren’t as fortunate as we are to be so connected and have access to such great institutions and care. Know that PanCAN is a wonderful resource for anyone – no matter where you are in your journey. PanCAN is also at the forefront of advocating for more federal research dollars for this disease and they need all of us to call on Congress to increase this important investment. I hope you will join PanCAN’s “Voices in Action” event on Monday, June 14, and take part in PanCAN’s Action Week so we can celebrate together and make a difference in this fight.