A lot of smiles Thursday at MSK. The latest scan was pretty good. They can't see the cancer anymore in my liver, and the pancreatic tumor continues to shrink, almost 90% since last summer. My doctor feels I'm exceeding expectations and we will keep those chemo appointments for the time being. Overall, I feel pretty good. Yet, more progress is necessary before declaring victory. Onward.
A lot of people come up to me and say they admire my positive attitude. Well, let me share a little secret. I'm a super competitive person (that could have started when me and my three brothers sat at the dinner table quickly grabbing food before it was gone). Let me give you an example. Throughout treatment, I have actually pushed myself to see how much I could eat, despite the nausea. It wasn't always fun, but gradually, my body started getting the message.
I can get easily bored without challenges. I guess God wanted to see what would happen if he threw a challenge at me for all the marbles.
And that maybe one of the reasons why I found "The Good Place" so appealing. I don't want to give away any spoilers now that the show has reached one of the most satisfying conclusions I have seen. The show was grounded on eye-opening philosophical and theological notions that tackle the most challenging moral issues of all. In a beautiful dance, four misguided humans and a reformed demon asked big questions and more. I'll be thinking about Chidi's Buddist "wave" analogy for a very long time (no more details from last night's finale, trust me).
Maybe we shouldn't have eaten from the tree of knowledge, and life might have been happier if we hadn't been kicked out Eden (the original Brexit, perhaps), but I don't think so. We are restless, thinking creatures, and it is healthy for us to ask the fundamental questions of why belong, what is our role in the universe, why is there an "end," and why would the Great Creator put mosquitos on the earth in the first place?
I do get teased a lot because I like to assume positive intent in others. It doesn't mean I'm not a skeptic or cynic (just listen to the Impeachment hearings). But we need to give people permission to ask big questions. Who will win the Super Bowl? Who is your favorite candidate for president? Will I really be healthy if I eat the Impossible Whopper? The important thing is that we need to give ourselves permission to listen openly to the answers, even when we don't disagree.
I don't ask God why I have cancer. We just keep our discussion on more important topics--like how I should live. I expect that conversation to continue a little while longer.
I have been busy. "Harvey" goes live in two weeks at Playhouse 22, and auditions take place in a few days for "In Danger of Falling in Love," a play I wrote that will debut in May at Villagers. My latest play, "Big in Texas," will debut in another festival in June, and I'll have start casting that as well. In between, I plan to head back to Colgate for a reunion of the school's radio station. My business clients love my work (so far) and the first two months of my tenure as Vice President of the School Board has been filled with meetings and emails. I feel pretty good, almost good enough to forget this malignant tumor less than the size of a thumbnail lurking inside of me.
Well, not quite, sports fans.
Of course, it's always a good sign when you have an oncologist who smiles every time he sees me and a medical staff trying to keep their enthusiasm contained with professional straight faces. My doctor suggested last week that I'm in partial remission, a term I would equate to being almost pregnant, but I'll take it. After eight months of chemo, I guess I earned any amount of optimism he wants to throw my way. That's Lauren, by the way, giving a thumbs up after giving me my latest treatment.
And then came this little virus called Covid.
I understand a lot of people are worried, even a little scared. Panic floats in the air like a black balloon. It reminds me of a George Carlin routine in which he talked about swimming in the East River as a kid to build up an immunity system that can stop anything. Maybe he has a point. Or maybe we have to let the math play out, which even in a worse case scenario, suggests that 96 to 98 percent of us who get the flu will be all right. At least I know my white blood cells are battle tested already.
My wife teases me that she doesn't know where all my energy comes from. I think it comes from a relentless desire to just enjoy life while I can. Something will get me eventually. I just plan to put up a pretty good fight in the process.
Stay well everyone. And keep washing your hands.
Today is one of my favorite days--disconnect day. As some of you know every, two weeks, I take some of my chemo home with me in a fanny pack attached to a port in my chest. Two days later I return to MSK, and they unplug me. They keep asking me if I want to take it out myself, but I'll defer to trained nurses like Brigit here. You'll notice we were practicing a "social distancing" selfie...
These days, we are all disconnecting in someway. Living in a time of plague does that to you. So many things that I enjoy have been taken from me in recent weeks, the things that help keep my mind on other stuff besides my condition. I get more worried calls these days. The chemo does depress my immune system, but my white blood cells are hardy little suckers, and seem to keep bouncing back. I'm careful about where I go, and I wash my hands religiously. I'm really doing pretty well and have much fewer side effects since they cut my regimen from three chemo drugs to two. Somehow, I don't think God would have had me go through 9 months of chemo just to kill me with a virus. He may have dark sense of humor about things, but not that dark.
And so, you restart that old discussion about fate, the things you can control and those you can't. The strategy of my current treatment is pretty simple. How many more good days can my doctors squeeze out of my life? And will I make the most of each and every one of them. It's a question we should all ask ourselves. I may have fewer than most people, not just because I have cancer, but simply because I'm older. Or maybe it's not that simple. A younger person may have more "good" days than me, but is he or she taking advantage of that surplus--sort of a variation of that old saying that youth is wasted on the young.
So now, I need to redefine good days. I'm lucky that I can work remotely. I'm lucky I get treatment ten minutes from my house. I'm lucky to have a dog that wants company and gives me an excuse to take him for a walk (at least when it isn't raining). I'm lucky to have family and friends who challenge me to stay active.
Rick and Ilsa had Paris. I have Zoom. Less romantic, but practical just the same.
Stanford psychology professor Jamil Zaki believes the current crisis is unleashing the good qualities of humans beings--more altruism as we replace the fallacy of self reliance with our natural proclivities to help others in times of need. Professor Zaki believes we are experiencing two global epidemics at the moment--one is viral, while the other is built upon kindness.
There are two statistical numbers that give me the perspective that I need right now.--2% and 80%. Both represent projected mortality rates. Roughly 2% of coronavirus patients are dying right now. But for those who have stage four pancreatic cancer, the mortality rate for a 12 month period is 80%. I've had my "come to Jesus" discussion with God already, and the conclusion is unmistakable. I haven't come this far to allow other health threats disrupt my ability to enjoy the good days. At some point this contagion may diminish, but the threat will continue to hang over all of us. When it is time to go outside again, I will put risk aside. There is no fun living in a hermetically sealed bubble.
Stay healthy. Keep your hands off your face. And wash those hands. We'll all get through this together.
A pandemic reaches our shores from Asia. A top health official urges public officials to contain the disease, but business and government leaders resist calls for a quarantine and try to downplay the threat for economic reasons. They claim health officials are exaggerating the threat, even spreading fake news.
Sound familiar? It actually happened more than a hundred years ago, when rats carrying bubonic plague on board an Asian steamship arrived in San Fransisco around 1900.
The doctor who first sounded the alarm, Dr. Joseph J. Kinyoun, is commonly known as the father of the National Institutes of Health and an early proponent of using microscopes to study bacteria. One of his enemies? Levi Strauss (you may be wearing one of his jeans right now), who called Dr. Kinyoun a fake. The California government managed to get rid of Dr. Kinyoun by requesting his transfer to a federal facility in Michigan. His successor did a better job convincing officials that they needed to turn their attention on controlling the rat population. But because of their failure to act quickly, it took officials almost eight years before they contained the epidemic.
By the way, the first major pandemic of recorded history happened during the reign of Justinian in the sixth century, when the source bacteria of bubonic plague made its first appearance in Europe, and conservatively wiped out between 15 to 25% of the population. Some historians think the rapid loss of so much ancient knowledge triggered the Dark Ages in the West.
I believe pandemics are just God's way of reminding us of our own hubris.
Nine months of chemo, on the other hand, has a way of making you humble and appreciative of every good day you get. For me, the coronavirus is more of a mental challenge than a physical one. I'm too competitive to cede the battlefield to a virus when I need to focus my energies towards addressing an adversary just as stubborn as I am.
Coaches give pep talks to rally their teams. One of my new habits involve periodic mental pep talks to my white blood cells. I tell them how important they are and how I'm counting on them to win the fight. MSK has provided me with this cool chart, tracking progress over the past year. When I first started receiving chemo treatments, those white blood cells got beaten up pretty badly. But in the last few months, they have been on the upswing, almost as if they got a second wind.
Justinian must have had good white blood cells, too, because he was infected by the plague, but survived. I'd like to think his all-consuming focus on reuniting the Roman Empire also gave him a mental edge--a boost of positive energy that even the plague could not overcome. He had a vision of something great, and he wasn’t going to let something like a pandemic get in the way.
We have made great progress since the days of Justinian. It might be difficult these days to find Lysol wipes, but at least we aren't sharing our food with rats anymore (or at least not usually). The biggest challenge facing us isn't really boredom. It's finding a way to make the most of the good days we have. And keeping our hands clean in the process.
We live in a strange time when almost everything we do seems to come down to being a "life or death" decision. It is an odd feeling that you don't usually experience in so-called civilized societies (although there hundreds of thousands of people around the world who life in dystopic societies in which every day is a struggle to survive).
Dying to have a milkshake from McDonalds takes on new meaning in the age of coronavirus.
But sometimes these "tough decisions" turn out to be less "tough" than we imagine. So it was that my doctor, concerned about the rising number of coronavirus cases in New Jersey, suggested that maybe we should spread out my "treatments," under the overall assumption that I'm doing well and that I should try to limit my trips to the clinic.
Naturally, I appreciate the concern. At the same time, I believe I'm doing "well" because of my current treatment schedule. To disrupt the "known" because of a threat from the "unknown" makes no sense to me. I can try to control risk by taking precautions (masks and gloves) but I can't eliminate it. And what happens if I don't get the coronavirus, but my tumor gains new momentum and starts growing again? It is a decision ripe with lethal consequences.
So we compromised. I noted that Saturdays are low traffic days in Monmouth, and I suggested we shift the day of the week for my chemo, rather than extending out the treatments from every two weeks to three. And he agreed.
I believe social distancing is important. I believe staying home-bound as much as possible is important. I also believe in my own common sense. It doesn't always win out in the end, but I think this time it did.
The nausea has a bit of a bite today following chemo. A little tired too. But I still find ways to rev up my appetite.
I do have some traditional tastes. Must come from my love of history. What I wouldn’t give to eat a Gros Michel bananna, for example, which were killed off by its own version of the coronavirus in the 1950s. I understand they still grow small quantities somewhere in Asia.
I also like chocolate sandwich cookies. Oreos naturally dominate the market, and I realize there are some alternate brands out there, but nothing beats my childhood experience of eating Sunshine Hydrox cookies (their raisin biscuits were heavenly too. The cookie that I could completely demolish out of the pack in one sitting, much to the dismay of my mother).
Unfortunately, Sunshine sold its brand to Keebler in the mid 1990s, and few years later, they gave up making them, except in 2008, when Kellogg (which bought Keebler) introduced it on its 100th anniversary for a few months.
I like Hydrox cookies. They have a distinctly different taste. Less artificial. The cocoa flavor nicely balances the cream filling. When I learned I could buy them from Amazon, I ordered a box. Sadly, they arrived today.
Sadly? I am following my Passover routine. I can’t touch them until after the holiday period ends. God is testing me again. So now I face the greatest of temptation. A box mutely mocks me less than six feet away. When it comes to Hydrox, no social distancing necessary.
When I was in sixth grade, students from all of the local elementary schools gathered for a track and field day. We were all assigned specific events. For some reason, I ended up running the 400 meter race. When the gun went off, I took off like a shot, and at the 200 meter mark, I was in the lead. But I had never run a long distance race before. I quickly ran out of "gas," and finished last. But I always remember one of the teachers encouraging me to finish strong and folks in the crowd complimenting me for my "closing kick."
Last summer, around my 60th birthday, I learned I had stage four pancreatic cancer. In the weeks before my official diagnosis, I began doing a little research. Every medical web site I visited said the same thing. I had a terminal disease. Chemotherapy would only be palliative. Most patients with my condition were dead in six months.
I want to emphasis the world "every." There was not one glimmer of hope. Not one piece of research to suggest any other outcome. Even my oncologist refused to say how long I had to live. He saw treatment as a year to year process. He thought I was a good candidate for a new treatment that showed progress--three chemo drugs that he euphemistically called a "spicy cocktail." But even that treatment failed for most patients.
So I was left with only one real option. No matter what was going to happen, I was going to make sure I had a strong closing kick.
I kept working, even flying to New Orleans to run a major off-site event for a client one day after treatment. I auditioned and won a dream role in a local theater production. I wrote and rewrote plays. I successfully ran for another term for school board. I made sure I made the most of every good day I had. And every bad one, too.
Taking three chemo drugs was hard, but how can you seriously complain about a treatment designed to give you a chance?
Today, I feel great. My doctor uses terms like "partial" remission. I'm on two chemo drugs now and my blood work, including my white blood cells, are essentially normal. My antigen marker that signals my type of cancer continues to drop. The neuropathy in my feet is beginning to fade. Knock on wood, but there is some degree of hope that I will make it to my 61st birthday next month. Or at least see the rest of season three of "Ozark."
I'm not out of the woods. I expect to be fighting cancer for the rest of my life. But I also know it can't actually beat me. Not as long as I have a strong closing kick.
Shortly after I got my cancer diagnosis last summer, I made a conscious decision to be as irrelevant as possible in my interactions with the staff at MSK. After all, I suspect most of the time, their days are filled with pretty depressing stuff, so they can use some levity. So whenever I call my doctor, I try to make his receptionist laugh, usually with pretty bad jokes. When I get calls from the medical staff to remind me of my chemo appointments, I make sure I tell them how "fired up" I am and how much my body really loves these treatments without any hint of sarcasm. And every few months, when I get a CAT scan to track the progress of my treatment, I usually crack up the technicians with my rendition of "CAT Scan" sung to the tune of the TV show, Batman.
So as I prepare for this week's chemo treatment, I can at least feel good about the CAT scan results I received this week. The tumor in my pancreas has shrunk by 92% since treatment began last July, and the liver remains clear of the malignant lesions that were spotted during my first scan. It's also a good sign when your oncologist smiles a lot. Or when you have more hair than he does.
Meanwhile, the MSK staff should get a little worried about the direction of all this "entertainment" I'm providing. I just got a ukulele.
I was attending a neighborhood Fourth of July party last year, when I received the first indication that I had a growth on my pancreas and spots on my liver. I didn't need a biopsy to know what it meant, and suddenly I found myself declaring my independence from a lot of things I had taken for granted.
I don't know why, but one of the first things that popped into my mind was a promise I made to myself.
As far as I'm concerned, there is no better whiskey in the world than Johnnie Walker Blue Label Scotch. Three fingers. Two ice cubes. One hour of contented sipping. So, I guess I'm not really surprised that I told myself that if I managed to make it to another Fourth of July party, I was going to buy a bottle of Johnnie Walker Blue to celebrate.
When I learned that a few of our neighbors planned to gather despite our global pandemic, I put my plan into action. We sat around a pool, cooked hamburgers and hot dogs, maintained proper social distancing, and enjoyed an impromptu fireworks display. In between, we all sampled one of the smoothest Scotch whiskeys you can buy. A new tradition had been born.
Thank you for all the kind wishes I recently received for my birthday. Now you all know the perfect gift when I celebrate my birthday next year as well (although I will always settle for a package of Hydrox cookies).) Some of my more optimistic friends have already suggested I should just go ahead and buy myself a case.
This week marks my first year of chemotherapy. The scar where they put in the port in my chest for my transfusions is barely noticeable now, and the folks at MSK Monmouth pretty much know me as this relentlessly cheerful guy who dances in the lobby area on the days they disconnect me from the chemo pouch I carry around for two days.
When I began my treatments, I asked my doctor about my prognosis. He said with a cancer like mine, it’s best to take it year by year, with the understanding that once one treatment runs its course, hopefully something new in the pipeline will take its place.
So far, my treatment has gone fine. To put it bluntly, modern medicine gave me another year to live. It's a good moment to assess what I did with all that extra time.
I wrote four new plays, expanded a shorter work into a longer one-act, and did extensive revisions to several others.
I got to see two of my plays live on stage. A half a dozen other works were used in staged readings and Zoom broadcasts, including readings that originated from Dallas, Texas, and London, England.
I had a chance to perform a dream role when I was cast as Leonard in Circle Players' production of “Seminar.” Then a few weeks later, I landed a plum role in Playhouse 22’s production of “Harvey,” currently on hiatus, but ready to get started again once this virus gets under control.
I was re-elected to another term on the local School Board just in time to serve as Vice President in the most challenging and dynamic year in the history of the district.
I saw one son graduate from Rutgers and another one get accepted in NYU’s graduate school for journalism.
When my oncologist suggested we slow down treatments because of the COVID-19 risk, I emphatically told him "no."
I watched Lisa once again build a business, absorb the blow of the COVID shutdown, and just keep going with online and outdoor classes, sometimes in complete renegade fashion.
My own consulting business grew. I’m busier than ever.
I became a grand-uncle when my niece gave birth to her new son, Colby. He was barely over one pound when he was born, but has thrived ever since, and is now home with his parents.
Over the past year, even the mundane (like eating my first Hydrox cookie in a decade, riding my new bike to the bagel shop, or being greeted by the wagging tail of my dog) canceled out the occasional discomforts. I never stop thinking about how lucky I have been. And I’m blessed to have so many people pulling for me. I can't thank everyone enough.
What will the next year bring? Frankly, I have no idea. What I do know is that the future is now. So I need to get back to teaching myself how to play the ukulele (thanks for the inspiration, Grace!). Fittingly, I am starting to learn a pretty passable version of “Old Man.”
I feel a sense of revenge this summer since the mosquitos are drinking chemo-infused blood.
In the meantime, cancer be damned. I just received two New Jersey Association of Community Theater nominations for both acting and writing (And First Avenue Theater's production of "Pets and Their Humans" picked up two more nominations). Amazed. Honored. Thankful.
The pending start of the Jewish high holidays (you know the one in which God writes in the Book of Life your fate for the coming year? Yeah, that one) got me thinking again of where I am, and more importantly where I'm going. Here I am with Addy, who kindly administered my latest cancer scan (she complemented me for being her "happiest" patient of the day). Keep in mind that I am feeling pretty good these days, probably better than I have in the last few years (as I say, I'm as healthy as a horse, if the horse had cancer), so I had high hopes we would see even further erosion of my tumor. Instead, it seems my tumor has the mentality of a NYC tenant lucky enough to being living in a rent controlled apartment and isn't interested in leaving. My doctor told me it was highly unlikely for chemo alone to wipe out a pancreatic tumor, so I have to admit I am fortunate that it remains unchanged in size and that my liver has been in remission now for six months. My good fortune doesn't negate my natural competitiveness. I still want to get rid of the little sucker.
Currently, my body is a police state. The chemo police have all the cells on lockdown. In the general scheme of things, that's a good thing. My doctor cheerfully pointed out that 80% of his patients are usually off chemo in a year. It was easier for him not to explain why those other patients don't need chemo anymore.
I am fortunate that my body tolerates chemo well. It's not a fun drug. It's not fun to carry a bag of the stuff for two days attached to a port in your chest. You manage the nausea and the exhaustion the best you can. Chemo takes away a few days every month, but it has also given me back more days than were expected when we started this treatment more than a year ago.
The trade-off is worth it. Unfortunately, for the moment, we have no idea how long this chemical partnership will last.
Over the past year, people touched with cancer have asked me for advice. I continue to emphasize that you need to focus your energies on the things you can control. By extension, you accept those things you can't. I can't tell my chemo what to do. I can't eliminate the uncertainty of a life now measured every two months by CAT scans. I can't tell you if I will ever be cured, or even what the means.
When I was younger, I always worried about growing old. Now that I'm on the cusp of being old, I'm learning it really isn't that bad. I still wake up every day wondering what will be new and unexpected. Learning to be old is almost as challenging as learning to live with cancer.
Which brings us back to the Book of Life. Jews are asked not to be perfect. Just be the perfect version of yourself. Rabbi Zusya once said, "In the world to come, they will not ask me 'Why were you not Moses? They will ask me, "Why were you not Zusya?"
As long as the chemo continue to work, I have an obligation to continue to live, to learn, to grow. It is an obligation we all share.
Shortly after I learned about my cancer diagnosis, I made a vow that no matter what happened, I was going to see the completion of the Holmdel 2020 project. Thirty one chemo treatments later, I was honored to be allowed to say a few words at this week’s ribbon cutting ceremony in front of the new entrance of the Holmdel High School. This is what I said:
The other day I was listening to an old Doors album called “Strange Days,” and frankly Jim Morrison could have been singing about today. Wildfires and killer hurricanes. Political division and urban unrest. A slumping economy and a resilient pandemic. And that was just in August.
Today, the circumstances are a little brighter. We gather to affirm the power of community—the ability to put aside our differences and focus our energies instead on the common good. We celebrate new classrooms, new academic and artistic programs, new athletic fields, and new systems to protect the safety and well-being of our students and our staff.
In sum, you could say Oscar Wilde was at least half right when he said you can never be overdressed or overeducated.
Today we also affirm that our most precious resource is our children. When you look around, you see a laboratory for hope and optimism, allowing our children to reach their full potential and to develop the confidence to address the problems that elude us today and the problems we can’t even anticipate tomorrow.
Benjamin Franklin once said that “an investment in knowledge always pays the best interest.” What we have done here is to put our investment in our children, and in doing so, prepare them for their own “strange days” ahead. Only then, will they be able to, in the words of Jim Morrison, “break on through to the other side.”
I’m so lucky to live in a community that has its priorities straight when it comes to public education. It’s been a honor to serve on the Board of Education and to work with so many of my Board colleagues, past and present, to make truly great things happen.
More to come!
Three weeks after I began my chemo treatments, I received a message from a local entertainer, Larry Cutrone, who knew me from my playwriting. It strikes me that “local” is too limiting a description. Larry was a man who seemed to be everywhere, a singer, producer, and writer with boundless, positive energy. He was also surviving his own bout with cancer, defying the odds and spitting into the wind.
He opened up about his own struggle with me and encouraged me to do the same. Our conversations were frank, loving, and inspirational. We chose to be memorable patients at our respective clinics. Larry, in particular, would bring along his ukulele and hold impromptu concerts. Staff at MSK nicknamed me the “happy” patient. Our wager with God was simple—as long as we woke up that morning, we would seize the day and squeeze as much out of it as we could.
Larry planned to produce a one act festival at the Darress Theatre in Boonton in June that would feature works we had both written, but when the coronavirus struck, that effort, like so many theatrical endeavors, was put on hold. Larry never lost his appreciation that his treatment had given him two more years when his original diagnosis gave him only two months. His spirit was strong, but in our most recent conversations, I could tell that Larry was beginning to wear down. I had planned to call him on Saturday, but I was too late. He quietly passed during the night.
I would say rest in peace, Lar, but I suspect he’ll be too busy for that. The nightclub in heaven has a new headliner tonight, armed with a smile, a joke and plenty of songs to share.
More to come!
Over the summer I read “The Emperor of All Maladies,” a book about the history of cancer, written by Siddhartha Mukherjee, an oncologist. Siddhartha called his work a biography, and it’s easy to see why. Cancer isn’t a disease. It’s a rebellion. A group of rogue cells rewire your DNA, and then they try to take over. Of course, if they win, everyone loses.
After 14 months of chemo, a ragtag group of malignant rebels are making a last stand inside a pancreatic citadel about a centimeter in size. My liver has been cancer-free for roughly ten months, so my oncologist thought the time was right to shift tactics.
On Thursday, I talked with two impossibly young cancer specialists who seemed only a few years removed from blasting away video game “bosses” between beers at a frat house. Now they have bigger gun at their disposal—targeted blasts of radiation designed to kill the remaining tumor. They liked to toss around confusing new words that may prove handy in a round of Scrabble, like ablative.
These guys were serious.
The approach calls for daily doses of radiation over a three-week period. No one has indicated yet if I will end up glowing in the dark.
One of the doctors made a curious remark during our discussion. He said I have “earned” this treatment, because my body reacted so well to my chemo. I had to smile because that what my knees said, too.
Some background. Over the last few weeks, I have been receiving side treatments from a local Reiki healer. Kim is a lovely woman with very warm hands and a curious ability to talk to my knees. I have learned that my knees nag a lot. They complain to Kim if I haven’t eaten enough celery or they tell her that I should avoid bananas.
During my most recent treatment, my knees assured her that my body is working hard to fight back. So true. And now it’s getting rewarded with a brand-new weapon to do so.
Over the last year and a half, I have visited Memorial Sloan Kettering every two weeks to receive my dose of chemotherapy. I'm fortunate that it hasn't been a lonely journey, and so many of you have faithfully followed my observations along the way. For that, I will always be grateful.
My first visit is depicted below. The most recent session took place last weekend. Today, I learned that it might be my last.
I had been conditioned to believe that stopping chemotherapy would be an end-stage event. Now I'm being asked to reconsider what the end really means. While I still have a tumor in my pancreas, the metastatic cancer has been in remission for over ten months. We are talking about something potentially miraculous--a stage four diagnosis in reverse.
In the meantime, a group of hotshot radiation oncologists plan to use my body as a video game in December. A member of the medical team told me that past outcomes of MSK's radiation treatment are similar to surgery, in the sense that it is designed to eliminate the cancer. He quickly noted I'm an unusual case. He meant that in a good way.
Last Friday, a doctor performed an endoscopy to place slivers of gold in my pancreas to provide the "ray gun" with a target. The ultrasound gave him the first real look at my pancreas since my treatment began. He said beyond the site of the tumor (which he emphasized was incredibly small) the rest of the organ looked like it never had cancer in the first place.
This all feels a little surreal. I think about all the strange coincidences that have led me to this point in time, such as how I managed to find myself living only 11 minutes from one of only two hospitals in the entire United States that offer the cutting edge radiation procedure I will receive.
"Life, if well lived, is long enough," said the Roman philosopher Seneca. We all have limited time. Cancer simply makes that truism more vivid. I don't see myself closer to a cure. I see myself having an opportunity to accomplish a few more things before the window closes shut. And I feel fortunate that God has made me more aware of the urgency that we should all keep in the back of our minds.
Today, three women tied up my arms, took off my shirt, put tattoos on my body and tickled my belly.
Bondage? Nope just preparation for my upcoming radiation treatments. Sorry to get you all excited.
It's ironic that purple is the color associated with pancreatic cancer, because politically, I see myself as purple as well. My town is filled with Republicans and run by Republicans. I work with Republicans all the time, I have been supported by Republicans (and vice versa), and I have worked closely with Republicans to tackle key community issues. My watchword is "assume positive intent."
But I can't ignore what my eyes tell me. The national Republican Party is executing a systematic attempt to steal the presidential election. This is not about Trump. This about his Orwellian enablers who are trying to undermine our democratic traditions. They are doing a nice job of packaging their nefarious activities under the guise of "fairness" and "ensuring every vote is counted" while they actively seek to do the exact opposite. Their recent efforts to reach out to influence local elections boards and prevent the certification of results is truly scary. People from both parties need to stand up and make it clear that what is going on is wrong.
Over the last week, I have gotten a new appreciation for TV dinners. Not as a culinary delight, but what they must be going through when you pop them into a microwave. Radiation is painless, so it is tough to really sense what's going on under your skin as technicians beam lethal doses to zap your tumor. The margin of error is small. I'm reminded regularly that there is this piece of small intestine nearby that doesn't really appreciate the sudden burst of sunshine. My radiation oncologist assures me everything is fine. I'm not unnerved by the fact that he has a tendency of having "walking" Facetime calls.
Radiation has also introduced a new type of nausea. I suppose many of you must think there is only one type of nausea--that queasy feeling that forces you to pray to the porcelain goddess throughout the night. Chemo introduced me to what I would call low-grade nausea, a multi-day experience in which you know its there, but you got to eat anyway, because if you don't, you die. BTW, the chemo also gives you a harbinger of what COVID does to your sense of taste. Chemo makes everything taste weird. Having a mother who taught be to eat everything off my plate trained me well to meet the challenges of this chemo-induced nausea.
Radiation nausea is a different world. It's like a knife attack. I can't eat before radiation, so I have to eat afterwards, because I can't take my new chemo pills on an empty stomach. Radiation nausea, anti-nausea meds, and chemo pills are old friends from their beer hall days, and they love to gang up on you. The chemo won't let you sleep, the anti-nausea meds sap out your energy, and the radiation keeps reminding you of the food still gurgling in your stomach. 33 chemo treatments taught me how to keep the vomit reflex under control, but it ain't easy.
Fortunately, they give me a weekend break. And I still got my hair. And my Reiki healer says that my knees still say positive things to her.
My primary oncologist (who could frankly make a good department store Santa) reiterated as long as they can't find any cancer outside of the pancreas, there is no reason to continue chemo treatments. Two more weeks of radiation, and I'm done. At least unless we see what the next cancer scan shows.
The radiation teams are also getting a first hand look at the strategy I used with the chemo nurses. When my father started to realize that he was suffering from dementia, he took a courageous and remarkable course of action. He made fun of everything, including himself. I thought that might be a good approach for addressing the absolute absurdity of all of this. Why take cancer seriously? Why not dance and sing and act silly? When am I going to get another chance? My reputation as this energetic crazy man who keeps throwing off stupid jokes is spreading within the radiation unit. As the plaque that sat on the desk of an old boss used to say, "Never be boring."
Or as my good friend Krissy Fless would say, "f@ck cancer."
Diwali, Hanukkah, Kwanzaa and Christmas are holidays that celebrate light, which is no surprise given that November and December are among the darkest months of the year. There is a driving human need to cast light into the darkness, either physically or metaphorically. I'm going to offer some thoughts on the latter.
This week, I will complete my last five days of radiation treatment (My radiation oncologist and I joked last week that each photon shot is like lighting a candle in my internal menorah). Then I'm done. Fourteen months of chemo and I'm still standing. My oncologist told me last week there is no reason to continue to give me chemo if he can't find any cancer. In about eight weeks, we will learn if the radiation eradicated the final tumor, and if so, my life going forward will be measured by periodic scans.
I'm very lucky to be where I am right now. I will get to enjoy the holidays I never expected to see. A dark future pierced by the lights all around me. But these lights are also there to remind me that there are plenty of people who have not been so lucky. Certainly, Covid has taken quite a toll in the United States--over 300,000 deaths expected by the end of 2020. At the same time, as dramatic as that figure is, it still represents only half the number of people who will die from cancer this year. And there is no magic vaccine available to protect those who will be diagnosed with this disease in 2021.
This brings us back to the lights. Francis Bacon once wrote, "In order for the light to shine so brightly, the darkness must be present." Darkness serves as a tableau to make those memories we cherish brighter still. We can view the lights of the holidays as a way to replicate the lights once cast off by a loved one. The holidays become a time to celebrate those no longer with us physically, but still alive and vibrant within our minds. Our ability to remember is the true miracle of the season.
Seasons greetings. May your own holidays be merry and bright.