On August 5, 2022, I went to see a new doctor for a yearly check-up. Gregory Prokopowicz had just arrived from Johns Hopkins Hospital in Baltimore. I was his among his first patients. I was 75 and felt great. I’m a writer and a poker player. I’d just gotten back from Las Vegas where I’d come in second in a big tournament. My sixth novel, Bluff, was going to be made into a movie. Dr. Prokopowicz said I was in excellent health—except for a slight problem with my kidneys that showed up on a blood test. I had no symptoms. But just to be cautious he sent me for a routine renal ultrasound.
After the procedure the doctor came in and sat down, staring at me like a person who had seen a ghost. What he said next made me wonder if the ghost was me.
“Your kidneys are fine,” he said. “However, there’s a very large mass floating over your other organs. We have no idea what it is.”
“Moby Dick!” I blurted out to take the edge off my terror.
After more scans and an endoscopy at Hopkins, I was told I had pancreatic cancer. I had never even given a thought to my pancreas, a hand-sized organ behind the stomach that makes enzymes to break down food for digestion. But now I could think of nothing else. The tumor was large and had to be taken out immediately.
On September 23, 2022, Fabian Johnston, a brilliant surgeon, performed a nine-hour operation on me, removing the tumor I had nicknamed Moby Dick, plus my spleen and my gall bladder. Moby measured 16 centimeters (6.3 inches). Amazingly, no other organs were affected. The lymph nodes were clear.
After the operation I learned through DNA testing that I had one of the rarest tumors in the world: a pancreatoblastoma. It has been documented mainly in children, but in only about 30 adults. Very little is known about this tumor except that if it is removed with no metastases—that is, without spreading to other organs—it may not recur like other deadly pancreatic cancers. Because Dr. Johnston had found no evidence of any metastases in any lymph nodes or vital organs, he declared me cancer free.” I returned home feeling like I’d dodged not just a bullet but a cannon ball.
One month later I went back to Hopkins to discuss the results of a postoperative CT scan. My husband and I met Dr. Johnston with his team in his office. My GP, Dr. Prokopowicz, was on the phone listening in. Though Dr. Johnston greeted me warmly, I sensed a shift in his normally sunny disposition. He looked at me and said gently, “Jane, I’m sorry to tell you that your recent MRI shows that you have metastases on your liver.”
The full impact of this revelation did not hit me right away.
“What does that mean?”
“Unfortunately, it means you have metastatic pancreatic cancer. And without treatment, you have roughly eight months to live.” (Even though the cancer had now spread to my liver, it was still called pancreatic cancer because that’s where the malignant cells originated.)
If learning I had cancer was an earthquake, this aftershock was a tidal wave.
“What treatment could I have?” I stammered.
“Chemotherapy is recommended.”
So now my hopeful outlook on life had changed to a grim outlook on death.
I got home and googled “metastatic pancreatic cancer.” Dr. Google was even less optimistic than Dr. Johnston. According to the web, I had a three percent chance of living eight months after such a diagnosis, even with chemotherapy.
My next stop was a consultation with an oncologist. This doctor told me that there was only one treatment for metastatic pancreatic cancer: chemotherapy. I’d heard horror stories about those drugs. But I also had several friends who’d survived their cancers by having chemo. The thing was, despite the pain of recovering from a big operation, I still felt remarkably well.
I told him, “I really don’t want to have chemo. I don’t want to feel bad until I die. I want to feel good until I die.” If I seemed cavalier, it was because I still had not yet felt the full weight of death upon me.
I asked him how long it would be before I had symptoms because I wanted to go play in a big poker tournament in Las Vegas and then go to Amsterdam to see the Vermeer exhibit.
“I don’t think a couple of months will make much difference,” he said. “After your travels we’ll stick a port in you and start chemo if you change your mind.” It was a quick visit.
When I got back home from my trips in February, I knew I wasn’t going to change my mind about chemo. I decided I was just going to live, live, live until I died. I’m relatively old. I had lived a fascinating, privileged life. I’m a Christian, though non-practicing. I was resigned to my fate and prayed with the thought: “Lord, Thy will be done.”
“My case is nothing short of miraculous. At this writing, I have lived almost two years beyond the eight months I was given.”Lucy Ridges / Millennium Images / Gallery Stock
Not that I stopped looking for salvation. I tried to get into a promising trial for pancreatic cancer patients but discovered I wasn’t eligible because my tumor was so rare. I talked to a couple of friends who had connections at other great cancer hospitals. One of them put me in touch with a famous oncologist in New York. We had a wonderful phone conversation. However, when I assured him I was not having chemo, I never heard from him again.
As the weeks passed, I told everyone who was interested (and many who were not) that I had metastatic pancreatic cancer and only a short time to live. For one thing I wanted people to understand that cancer is not a shameful or shadowy disease. And for another, quite selfishly, it helped to bolster my decision not to have chemotherapy while I still felt well. I even showed some hardy souls the pictures of Moby I had on my iPhone. Taken immediately after my operation, the photos showed Moby laid out on a blue surgical cloth, the size of a small football, an ovoid mound of veiny, bloody flesh, practically throbbing with evil. Literally everyone gasped in horror and disbelief at the sight of this alien thing. I found myself taking a perverse pride in him.
In January, I casually announced to Marie Brenner, one of my oldest friends in the world, that I had metastatic pancreatic cancer and not a lot of time to live. I wasn’t maudlin about it, but Marie was almost indignant at the news.
“You’re not going to die on my watch!” she said firmly.
“Honey, I love you. But, trust me, I’m a hopeless case.”
“I know a doctor who only takes hopeless cases,” she shot back.
She told me about Dr. Tomoaki Kato, a medical magician she got to know up at Columbia Presbyterian while she was researching her latest book, The Desperate Hours, a chronicle of the year-plus she had spent at the New York Presbyterian hospital system during the pandemic. Dr. Kato is best known for liver transplantation, but he has also performed other breakthrough operations, including separating conjoined twins. He led the first reported removal and re-implantation of six organs to excise a hard-to-reach abdominal tumor. He is so revered that when he contracted a life-threatening case of COVID, the story of his ordeal and recovery was on the front page of The New York Times.
That day, Marie sent all my scans, blood tests, pictures of the tumor, and medical history to Dr. Kato, hoping my rare case would interest him. He got back to her immediately, and said he was well acquainted with my rare pancreatoblastoma. He agreed to take my “hopeless” case.
On a drizzly April morning, my husband Jim, Marie, and I met Dr. Kato in his office at Columbia Presbyterian. Dr. Kato is a slim, fit man with a handsome face and calm dark eyes. He was in his surgical scrubs scheduled to operate that morning. Yet he spent over an hour with me; his voice was soft and thoughtful as explained my situation. According to the very sensitive blood tests I had every month taken from a finger prick, the level of Circulating Tumor (CT) in my body was relatively low. This meant I still had some time. However, if the CT level shot up, that would mean the cancer was spreading rapidly. He showed me a scan of my liver and pointed out the metastases on the two lobes. It was only a matter of time before these “mets” would take over my liver and kill me. We discussed my options—chemo, wait and see—and then he asked, “has anyone suggested Y-90?”
He explained. Y-90 is short for Yttrium-90, a radioactive isotope which can be injected into the blood supply of the metastases in the liver and possibly kill them. It has been used successfully on other tumors, but never on the liver metastases of a tumor as rare as mine.
Marie and Jim and I left Dr. Kato’s office practically in tears. Was there a glimmer of hope after all?
Dr. Kato now placed me in the hands of the interventional radiology department and David Sperling.
Dr. Sperling and I first met through a video call where he explained the details of my treatment. Radioembolization requires at least two treatment sessions for each lobe affected with metastases. Because I had “mets” on two lobes, I would require four sessions in all. In the first session, a catheter is inserted into the liver artery through the groin. Through angiography the arteries fueling the metastases are “mapped.” In the second session, a catheter is inserted into the wrist. The radioactive isotope Y-90 in the form of tiny resin beads is injected into the “mapped” blood supplies of the tumor. Y-90 aims to kill them by cutting off their blood supply.
Map and zap.
On May 26, 2023, I met Dr. Sperling in person. I lay on a table in a large operating room at Columbia Presbyterian. Dr. Sperling is a meticulous man with the eyes of an eagle and a no-nonsense air. He worked quickly and confidently. The procedure took an hour and a half. I went out for dinner that night. Two weeks later I came back and he zapped the mets with Y-90 through a line in my left wrist. That procedure took about an hour. I was slightly nauseous afterward but otherwise had no side effects. After each Dr. Sperling and I looked at MRI pictures of my liver on a computer. He was encouraged by what he saw. Y-90 appeared to be working. The mets were dying.
Since my first mapping I have gotten to know Dr. Sperling. He is a star in his field of Interventional Radiology. He has a wonderful sense of humor. He loves dogs as much as I do. He loves Fantasy Football the way I love poker. He is also a champion gamer. I could see how much he enjoyed zapping those mets. After my treatments were over, the key question was whether Yttrium-90 would work on a rare pancreatoblastoma. I went to Vegas to play in the World Series of Poker. Poker was the one thing that got my mind off my “eight months to live” diagnosis. Since I figured I wasn’t going to live to finish my eighth novel, I might as well have fun. When I returned from Vegas, I went up to Columbia Presbyterian for another MRI. Once again, with me at his side, Dr. Sperling examined the results of the scan. The treatment had worked!
Two months later, the Circulating Tumor in my blood went down to zero—meaning I was for the moment cancer free. It was a true miracle. But because we are dealing with the Emperor of All Maladies, as cancer has been aptly named, follow up scans were necessary. A subsequent MRI revealed I had another metastasis on my liver. Dr. Sperling treated me again. Map and Zap. Then pray.
I have now survived almost two years beyond anyone’s expectations. With few side effects, no down time, and a remarkable record of success with other tumors less rare than my own, it is a wonder to me that Y-90 is not considered by more oncologists as an alternative or an adjunct to chemo. Interventional radiology using Y-90 treated my liver metastases from the inside out. Chemotherapy would have treated them infusing the body with harsh chemicals which would hopefully kill them but also kill a lot else in the bargain. Yet chemo remains the first choice of oncologists in cases of metastatic disease. Y-90 may then be used as a last resort if the chemo has failed to eradicate the liver mets. My treatment was only good for the liver. In general, systemic chemo is the first second or third option and it is unclear why Y-90 is not offered more frequently as an alternative. Perhaps because chemo has become the standard first option, I was never offered Y-90 as an alternative. Of course, every case is different; consultation with an experienced medical professional about Y-90 is mandatory if you’re considering asking for it as part of a treatment plan—it’s not a fit for everyone. But I do believe that Y-90 could save at least some patients the agony of chemo and extend their lives.
Cancer can paralyze you with fear—both the fear there is no hope and the fear of talking about it. My advice is to broadcast your disease. Tell anyone who will listen what kind of cancer you have. Do research. Knock on every medical door. Don’t take “only this way” for an answer.
My case is nothing short of miraculous. At this writing, I have lived almost two years beyond the eight months I was given. In June I went out to Las Vegas and played in the World Series of Poker. I had no luck with the cards. But the real luck was being there at all. Just being alive is lucky!
The small met on my liver was zapped again. The CT has remained low and stable. I may even live to see the movie based on Bluff which is in the works. The point is to keep kicking the can down the road.
I used to get up every morning wondering how and when I would die. Now I have PTSD thinking I might be around for a while. I can live with that.
