Rich is a greeter. It's always a competition to see which of us is going to have the bigger smile when I come by the MSK clinic in Middletown for a visit (underneath the mask, of course).
Frankly, the smile was little more forced than usual when I came by to discuss my latest scan in February. After 18 months of chemo and a radiation holocaust in my pancreas, we are sort of back to where we started as my cancer returned to my liver
And that's when I learned the latest results are actually a good thing. Let me explain.
Shortly after I was diagnosed with cancer, I signed some papers that allowed Memorial Sloan Kettering to do a genetic scan of my body. That information gets thrown in a database accessed by medical investigators conducting clinical trials.
Turns out that I have something called a mutated RET proto-oncogene which triggers the growth of my pancreatic cancer. More importantly, the FDA approved last year a drug that inhibits RET in lung and thyroid cancer with pretty dramatic results. Researchers want to see if they can have similar success with other cancers (there are some early indications that it does work with cancers that originate from the pancreas).
The basic idea around the study is to determine the optimal dosage for the drug, which is called Selpercatinib. I understand the Disney people originally planned to use that name for a song in "Mary Poppins," but "Supercalifragilisticexpialidocious" won out in the end.
Suddenly, I'm pretty popular, as in the Sally Field "you like me" realm of popular. Paperwork asking me to join this new clinical trial arrived only hours after my oncologist shared his reading of my latest scan. I've heard they might entice me with a new toaster oven. Even the pills are free.
My new best buddy is Dr. Drilon, who has been leading clinical trials around this drug for years. With a name like that you might expect him to a dentist or a power tool manufacturer. Seems like a good guy.
Of course, in the Catch 22 world of modern medicine, you can't take a drug designed to knock out your cancer unless they can find cancer to knock out. So in a weird way, chemo's failure to finish the job allows me to take what might end up being a better drug anyway.
The trial requires me to head up to New York City weekly so the researchers can closely monitor me. But I also understand that if I can make it there, I can make it anywhere.
It's up to you New York.
This March was one of those months that you want to grind up, stuff into a trash bag, piss all over it, cover it in lighter fluid and watch it joyfully go up in flames.
Or maybe it would best to describe my March as a car wreck, like my beautiful Volvo, hit on Route 34 on a clear night, while going at the speed limit of around 45 miles an hour, by a "distracted" driver going so fast that he literally sheared off my right back wheel. I still don't understand how I didn't lose control of the car or that it didn't tip over. Once again, another testimonial for Volvo safety. But maybe not their logistics. The repair shop is still waiting for parts to arrive from Sweden.
March was also the month I started a new clinical trial. Truthfully, there was very little "new" about this drug. It had already been FDA approved for two other cancers, where the response rate had been excellent and sustainable. It matched the genetic makeup of my cancer and was designed to target the gene that was generating my cancer cells and turn it off. A true miracle drug. The MSK clinical team had been eagerly following my case. They had wanted me for months. Their lead researcher had been working with hundreds of patients for over three years. I mean, what could go wrong?
Hold that thought.
The trial required me to go to NYC at the start. The facility on the city's east side had the quiet buzz of efficiency. Patient people processing thousands of patients. Unsuspecting the whirlwind just about to burst through those elevator doors, a memorable presence ready to give a positive poke to everyone everywhere. No one was safe.
As I munched my sandwich in the sixth floor cafeteria, a stranger turned to me and said I’m the most positive person he has ever met. I slowly nodded. Mom taught me never to talk with my mouth full.
The clinical trial people were putty in my hands. I quickly put the receptionists in tears as I kept lobbing jokes like hand grenades. The nurses were peppering me with questions, a mere formality, but it was tough to stay serious when they earnestly told me that during the trial, I am absolutely forbidden to go around impregnating women. I responded that I would only focus my attentions on menopausal ones.
During the first few weeks of the trial, I developed a nagging, dry cough, and a series of low fevers. COVID was ruled out, X-rays show clear lungs, but my energy was slowly leaking out like a balloon with a small hole. I begged the team to give me anti-biotics (a request eventually granted a week later which knocked out the cough in two days as I expected), but the medical folks were distracted by disturbing liver numbers. I was told to stop taking the drug at the end of March, and when I appeared at my next clinical visit on April 6, I found myself unexpectedly whisked into the hospital for tests and monitoring.
They needed to figure out what was wrong with my liver and why. No one could say how long they thought I would have to stay. With literally the clothes on my back and a business computer without a charger, I had my sons put together a CARE package and my amazing friend, Vicky Flynn delivered it to the NYC (she even had a spare computer charger).
Suddenly I had become a NASA project with three separate medical teams “working the problem.” A young man with the air of counterculture waited to transport me to my ultrasound. We started to talk about music. The cough was now gone thanks to modern medicine, so there I was rolling down a hallway, belting out “Gold Dust Woman” while we wheeled briskly into the room. A version of “Fly Me to the Moon” got the tech folks asking for encores as the ultrasound technician with the foreign accent smiled and did her job. I asked her how the liver looked. “Fine,” she said. “Just bigger.”
In sum, the cancer drug was beating up the liver, and it was inflamed. I was put immediately on heavy doses of steroids. The head of the liver team, a young guy with a penchant for sweatshirts who seem ready to head off to the next college kegger was keeping his cards close to his chest. I could be there for two days or eleven. It depended upon how quickly my liver bounced back. But at least there were no obstructions and no need for medical procedures.
My nurses like Ashley were widely competent. Ashley’s colleague, Debra, who filled in on Ashley’s day off, has a child in medical school. She had this clocklike precision around everything she did. On the first night I suddenly woke up at one in the morning to find two nurses feverishly covering me with icepacks to bring down one of my fevers, which was covering me with sweat.
Thursday didn’t show too much movement, but on Friday morning, the oncological team burst in at 8 a.m. with that level of enthusiasm that should come with a soundtrack. Tapping on cell phones and smiling broadly, they told me the liver had bounced back dramatically, and that after that day’s afternoon treatment I could go home. My liver, the recipient of years of “almost” clean living, was once again imitating Gumby, as it has throughout my treatment.
Lots of thanks to staff, a walk about the floor singing loudly, and then I’m in the back of a Lincoln limo, tired and contemplative. Of course, the house was in slight disarray when I came home, and I spend the early hours cleaning the bathroom where we keep the kitty litter boxes.
I had it keep it contained so well, but as I told the social worker who had stopped by earlier in the day, the emotions were going to come out eventually. I had a few things to say to God. In the darkness of my garage, I let him have it. Through angry tears and a raspy voice, I told him in no uncertain terms that I wasn’t quitting. I told he was going to have try a lot harder if he wanted me to come upstairs. I told him I wasn’t done. I don’t know why, but deep in my heart I knew that.
Later in a quieter moment, God and I agreed to keep talking. Or at least I did. Negotiations are never over.
Foie Gras is one of those interesting examples in which human ingenuity and cruelty intersect. Just imagine feeding a duck or goose an excessive amount of food to make sure their livers swell to ten times their normal volume to produce a culinary delicacy. I'm sure it's tasty. The recipe dates back to the ancient Egyptians.
Been thinking about Foie Gras lately because my own sad and swollen liver has the medical team at MSK stumped. Today, we increase the steroids by 50% and we are scrambling to set up more medical tests to get to the bottom of the problem. Without a happy liver, we can't proceed with the clinical trial, which has produced some good early returns.
Frustrated? Sure. Imagine being tied to a chair in the desert with a glass of water just out of arm's reach. But as I was reminded the other day, I am being treated by one of the top hospitals in the world. And the doctors have kept me going almost 22 months after the cancer was first discovered, which is pretty remarkable. I just need a little more positive energy headed my way. Telling my liver that if he doesn't get with the program that it might end up on a plate with Fava beans and a nice Chianti doesn't seem to be working. :)
The question was simple. The tone was a little off. "Did you read the scan report?" asked Madeline, one of the nurse practitioners on my MSK medical team. Throughout the clinical trial, the first adjectives that come to mind when I think about Madeline is serious, business-like, and prepared. Befuddled was something all together new.
Of course, I had the report. It had arrived in my MSK email box roughly an hour after I received a series of CAT scans and MRIs on Friday. My cranky liver had prevented me from getting any anti-cancer treatment for almost a month. The last thing I wanted to do was look at my scan report.
"No," I said. "I thought I would wait until I heard your conclusions."
I lied. I was just too scared to look at it.
A pause. A long incredulous pause.
"No new growth," she said. "The cancer stayed the same."
Actually, that wasn't completely accurate. The scan also showed the spot in my pancreas itself had shrunk, potential evidence that all that radiation back in December did the trick. And the Monday blood work showed the liver enzyme count was dropping.
A little early to declare victory. Liver still has to heal. And we still need to find the right dose of my current drug. The road ahead could have some more bumps, but I'm blessed to have a pathway in the first place.
Over the last 22 months, I have been humbled by the prayers, the well wishes, and the relentless tide of positive thoughts.
And they are apparently working.
Just finished the first draft for a radio play for my English friends. In the process, I learned inadvertently that you can write pretty emotional stuff when you have been on steroids for three weeks. :)
Lesson one on how to charm nurses. During check in for my liver biopsy in NYC yesterday, one of the nurses asked if I have fallen recently. Too easy. I quickly responded, “Besides falling in love with you?”
Liver enzymes levels continue to move in the right direction. Overall, feel good. Hopefully more progress next week.
The MSK lobby in Monmouth was pretty empty when I stopped by for my scan last week. So I chatted a bit with the receptionist.
"Not too many people here, huh?" I asked.
"Yeah," he said. "It's practically dead in here."
Always love a good Freudian slip.
The clinical trial is over. My liver didn't want to cooperate, partly because some of the cancer wanted a water view, and settled near a bile duct. Those pesky enyzme numbers weren't going to go down on their own, so on the Saturday of Memorial Weekend I returned to chemo treatments.
In general, the new combination promises to be a little milder on the constitution, and I don't have to carry around a chemo pack for two days. There is a better chance I lose my hair, but it might simple thin, rather than fall out (one nurse pointed out if you got thick hair already, you probably will be safe. We'll see.)
The most important thing is that I have options, and if the chemo steadies the ship, we just wait until the next treatment comes along. The scan didn't show any growth in the pancreas itself, so maybe the radiation holocaust worked there.
About that "death" line? Well, I'm a little too busy to think about end state right now. On Saturday, one of the first plays I wrote after my diagnosis will be featured at the Middletown Arts Center's Festival of One Act plays--"Big in Texas." One of my better heartfelt works. The staged readings begins at 7 pm. Be good to support local theater, or at the bare minimum, just see theater again done live and in person.
Equally exciting is the fact that Playhouse 22 will go ahead with Harvey this fall, so if I hang in there (hair or no hair), I'll at least get a chance to act again on a stage. And literally minutes after I got that confirmation, the Villagers folks emailed that "In Danger of Falling in Love" is back on their schedule for next season, after being cancelled because of COVID. One of my plays gets a radio reading out of Chattanooga later this month, and I drafted two more plays over the last few weeks for two other companies.
At some point, the treatment was going to hit a snag. The key is to get back on the horse. And like I say to everyone, I'm as healthy as a horse. As long as the horse has cancer.
I'm not what you would call a heavy drinker by any means, but it is nice to be able to open up a cold beer from time to time or even glass of scotch or rum on ice. Unfortunately, alcohol and cancer in your liver doesn't make a good combination, and I have been abstinent since February. I never realized how much I would miss it, or how alcohol plays such a major role in social gatherings. I have a renewed respect for those friends of mine who are recovering alcoholics who have managed to go for years fighting this urge. In the meantime, pass me that ginger ale, please.
I guess it's always a matter of perspective. When I went back on chemo three weeks ago, I didn't worry so much about the nausea or the exhaustion. I could always hide that. My main fear was losing my hair, so I quickly scheduled a picture shoot with a local photographer just in case. My favorite is my new profile photo (thanks for the nice comments).
Apparently, my timing was good, because beginning today, I started shedding like a cat. I guess I'll know in a few days if my thick hair will just get thinner or become history.
Sigh. Obviously, I understand the alternative isn't better, but I'll be honest. This ain't going to be easy for me. Wish me luck.
Spending the weekend in New York City in a lovely room overlooking the city’s east side. Too bad it’s a hospital room here at MSK. I did manage to charm the staff when I arrived on Thursday night with my usual routine of singing, dancing and semi-comical jokes. As a result, those on duty in the urgent care center pulled strings and placed me on the elegant 19th floor, a ritzy section of the hospital with single rooms usually reserved for VIPs. But then if I beat pancreatic cancer, I might be the biggest VIP of them all.
My latest NYC adventure began when they did my blood work prior to my latest chemo round. My liver numbers looked very bad, suggesting that one of my tumors was blocking a bile duct and later confirmed by my CAT scan. I’m scheduled for an endoscopic procedure on Monday to address it.
Initially, they wouldn’t let me eat, just in case the procedure took place on Friday. I pointed out I’m only supposed to celebrate Yom Kippur once a year.
So I’m stuck in a hospital bed this weekend, because if I leave, I lose my place in line (Emergencies go first. The fact we are trying to avoid an emergency is irrelevant). The nurses are all sweet and pretty and naturally they are giving me (wait for it) the VIP treatment.
Doctors do stop by from time to time. One even came by at 3 a.m. I did manage to get one to let me get a peek at my scan results, which showed the largest liver tumor was shrinking at the same rate my pancreatic tumor shrank during the first round of chemo two years ago.
With those results in mind, I was a little amused when one doctor confidently told me today that the goal of a second round of chemo (that describes what I’m going through right now) is to just stop the cancer from growing. Maybe, I thought, he should aim higher.
The question is not how to get cured, but how to live."
--Joseph Conrad, Lord Jim
There is a fogginess that has settled over me, a drifting exhaustion that makes it difficult to do the things I wouldn’t think twice about. It settled in after my latest round of chemo and it has proven relentless. Almost like the Elvis Costello’s song, I have sunk into the Blue Chair, stuck and immobile.
Probably the most literate excuse you have ever read why I haven’t been responsive to all those FB IMs, texts and phone messages.
After over 40 chemo treatments in roughly two years (not to mention putting stents to keep a liver duct open), one would have to expect the body to start to complain. And the Conrad quote continues to sum up my overall strategy. Don’t take good days for granted. And even in the bad days, try to squeeze out something positive. For example, the latest photo was taken at the gym one day after my last chemo injection. And I did manage to walk a mile today (with feet numbed by neuropathy).
Doing my due diligence, too. Stopped by a funeral home the other day just to get a better idea what a “funeral” entails with a young manager doing his best to project the right amount of cheerfulness and somber respect. About fourteen minutes into our conversation, he stopped and took a close look at me. “You know,” he said, with a head shake for additional emphasis, “you are the calmest person I have met.”
Well, maybe it helps when you know that the traditional Jewish pine coffin only costs about $400.
The game plan is now a matter of endurance. Stick with a dose of chemo that will make the remaining cancer melt away like units of the Afghan regular army (or for those with long enough memories, the ARVN in 1975). Eat through the nausea. Get out of the Blue Chair. Then hopefully in a few months, we reach a point when a more benign solution is available to keep everything in check.
Friends are important now. If the responses are slower or my voice sounds softer, just consider it a phase, not an end state. There are still enough warm days out there to spend a few minutes on my patio with Gatorade.
“Facing it, always facing it, that’s the way to get through,” wrote Conrad. “Face it.”
Early on, I reached the conclusion that the best approach for addressing my cancer challenge was to try to stay even keel. It hasn’t been easy, especially in 2021, which has been a roller coaster ride built around failed clinical trials, tumors taking pleasure cruises through my liver lobes, and fluid backups that would make you think I had a personal visit from Hurricane Ida. I spent most of August zombie-like—bloating, nausea, weight loss, and a general malaise which made it impossible to do the simplest things.
The Thursday before Labor Day weekend was the nadir. My scan showed excessive flooding on my liver, bilirubin numbers too high to tolerate chemo, and my cancer still growing. Even a local funeral director was frightened by my appearance, and this is a guy whose business is built around dead people.
My doctor sent me back to the hospital in NYC where I was a greeted by a French doctor with a sexy, unintelligible accent. I think he said that we needed to put in a drain. Or he might have been commenting about oranges in Spain. Either way I nodded my head and told him to do what he must.
He and his team drained two liters of fluid from my liver and put in an active drain in my right side which continues to collect bile on an ongoing basis in a plastic bag. Every day, I feel a little bit better, and while there is still more improvement to make, my oncologist did say the bilirubin numbers are now low enough to allow him to restart chemo, using a version of the original combination that I tolerated well.
Balloons? Confetti? No yet. It isn’t easy, but I need to keep my perspective on the bigger picture.
Learn to roll with change and stay focused on the final prize. “Choose to be optimistic,” said the Dalai Lama. “It feels better.”