Life in Jeopardy

Alex, I’ll take standing on my soap box for $200.

HOPEspotters, yesterday, long time “Jeopardy” host, Alex Trebek announced that he has been diagnosed with Stage IV Pancreatic Cancer. This is a devastating disease. Mr. Trebek released a video sharing his news and provided his positive outlook on his situation.  He states the announcement is in “keeping with (his) long time policy of being open and transparent with the “Jeopardy” fan base.

“Just like 50,000 other people in the United States each year, this week I was diagnosed with Stage IV pancreatic cancer. Now normally the prognosis for this is not very encouraging. But… I’m going to fight this. And I am going to keep working. And with the love and support of my family and friends, AND with the help of your prayers, also, I plan to BEAT the low survival rate statistics for this disease. Truth told, I have to. Because under the terms of my contract, I have to host “Jeopardy” for three more years. So HELP ME. Keep the faith and we’ll win. We will get it done. Thank you.”

Friends, I am not about to kick someone when they are down. Let me be absolutely clear that I am terribly sorry for Mr. Trebek and his family.  I absolutely wish him the very best. And until I walk a mile in his pancreatic cancer filled shoes, I am NOT going to judge his reaction. I have NO idea how I might respond in a similar circumstance.

I am, however, going to use this public example as a critical teaching moment because I feel like I have to. There is SO much to unpack in Mr. Trebek’s situation and statement that it would be.. negligent.. for those of us who see these cases to remain silent.

Media around the country today was flooded with well wishes for the long time, beloved game show host. The constant commentary frequently included, “he’s a fighter” and “if anyone can beat it” and “he’s got the right attitude”.

While these are wonderful sentiments, and well meaning I am sure, I challenge the speaker to sit and say these words to someone with Stage IV pancreatic cancer. In their bedroom. Because they can’t get up and get dressed. Because they are too sick. And they just barfed their toast. And they are terrified. And really, really, sick.

Cancer really challenges the adage that attitude is everything. And suggesting it to the patient can be totally out of place.

Further, can we finally debunk the notion of the “cancer fighter”? Everyone who has cancer, had cancer, fears cancer, survived cancer, fights. It is all a fight. A terrifying, soul searching, highly inconvenient fight that often offers strange and scary forward paths. “We didn’t get it all”. “There is a clinical trial that is being offered..” “We can’t do treatment this week because your levels are too low..”

It can be like a blind folded boxing match with multiple, fierce opponents.

Everyone fights, Mr. Trebek. In 20 years of sitting at the bedside of people with your diagnosis, I’ve yet to meet the person who has said, “Eh… no biggy.. I’m just going to roll over..” Even, and perhaps most especially, the patients who have told me, “I am done with treatment” are fighters because they have decided to fight for different things: peace, comfort, dignity.

Fighting for a legacy is still fighting. Without question.

So please, oh please, let’s reframe the “fighter” paradigm and let’s be awfully careful to not assign those who make different choices as ones who’ve “given up”. They’re already afraid enough of that suggestion. It can be crippling.

Mr. Trebek also states he plans to “beat the low survival rate statistics for this disease”. Clearly, I don’t know when the famous game show host was diagnosed or what the situation was that predicated his diagnosis. I can imagine he is in shock, so again, I don’t judge him for his words. But Mr. Trebek, the survival rate for Stage IV is 3%. Yes, I believe in miracles but I also believe in science and the benefit of expert opinions. In my work, the hardest thing is balancing real hope against false hope which is done by restating the question, “what are we hoping for?”

Additionally, Mr. Trebek’s brazen suggestions that he has got the upper hand on his illness makes me worry that there are thousands of very sick cancer patients calling their oncologists today screaming, “Give me what Trebek is having!” If only. If only…

Finally, Mr. Trebek’s statement concludes with “keep the faith and we’ll win”.  I’m sorry. That breaks my heart. For all the millions of people that admire the long time Jeopardy host, I fear there may be some who will deeply believe their faith and their prayers will save him. I believe in prayer and I believe in hope but I recoil when we offer false guarantees. I believe in God. And I don’t question that. I’ve been at the bedside with - I hate to say- HUNDREDS of patients who wanted to believe their faith would guarantee them a win.

When the win isn’t delivered, the loss is exponentially devastating.

Let’s all be mad as hell at pancreatic cancer. It is an asshole. Let’s all pray for people with love and people with cancer and double pray for people we love who have cancer. And certainly, let’s all pray for Mr. Alex Trebek. For what I know of his life and career, he’s very well liked and considered very smart. Unfortunately, neither of these things kept him immune from the deadliest cancer. At age 79, he’s going to face a very difficult situation.

Here’s the upside: “Jeopardy” reaches millions of Americans every night and it helps make them smarter. Let’s hope that Mr. Trebek’s VERY unfortunate situation can be an opportunity- going forward- to educate the American population about hard choices and palliative care.

What if he said instead, “My friends. I have received a devastating diagnosis that is Stage IV pancreatic cancer. I didn’t see this coming and it is very frightening. While there are so many things I don’t know, here are the things I do: I don’t want to spend my time in the hospital. I want to be optimally comfortable. I want to spend my time with my family, reviewing my wonderful life and finishing my business. Therefore, I am resigning my position, that I have deeply loved. Thank you for all you support over the years. Please pray for me and all the people facing cancer. We need grace.

Because in the face of Stage IV pancreatic cancer, I will take grace for $1000. With a daily double for palliative care.

Palliative Care and the Great Pumpkin

Sean has had two sleepovers in the past two weekends. He’s exhausted. I am always exhausted. Tonight, as we battled for that last half hour of contentment before resigning to bed, we watched Charlie Brown’s “It’s the Great Pumpkin” and I have so much to say.

As an early disclaimer, I grew up in a Catholic church with incredible priests: men who could take the gospel and make it real and liveable to every participant. Monsignor Mahoney, who became a beloved family friend and ultimately officiated my wedding. Father Mahoney caught my attention as a child in his homilies as he often referenced the Peanuts gang. So that my theology goes back to Charlie Brown may seem brilliant, but it is admittedly not entirely original.

For those of you who haven’t seen “The Great Pumpkin” in a while, I am here to provide a brief reminder.  Charlie Brown’s best friend, Linus,  is filled with anticipation and joy about the upcoming arrival of the Great Pumpkin.  Per Linus,the Great Pumpkin rises out of the pumpkin patch and brings toys to all the boys and girls. Linus foregoes trick or treating awaiting the arrival of the Great Pumpkin. Linus’s sister, Lucy, is verbally outraged at his foolish belief and behavior. Charlie Brown’s smitten sister, Sally, stays with Linus, believing they will celebrate the Great Pumpkin’s arrival together.

Spoiler alert:  the Great Pumpkin doesn’t come. Sally is enraged. Linus is dismayed. And mean Lucy, in spite of herself, rescues Linus from the patch and lovingly brings him back to  bed. Upon awaking, Linus professes NO remorse to Charlie Brown for his devotion to the Great Pumpkin.

Ladies and gentlemen, I present to you palliative care. Hope. The loud voice of second opinion. Tenacity. Discouragement. Support. Unbreakable faith.

Again, with a nod of gratitude to Father Mahoney for illuminating the theology within the Peanuts gang, I offer these thoughts. The Great Pumpkin is special: whether it be as ethereal as the Holy Spirit, as pragmatic as a symbol of hope, or as allegorical as treatment for advanced disease, that Pumpkin represents something worth waiting for. Linus, ever the representative of humanity seeking the Lord, remains steadfast in his belief of this wonderful thing that he has never seen. In this story, Linus is Faith 101.

Linus’s faith is unwavered by the mockery of his friends and especially his sister. Linus’s faith becomes a clear and shiny hope, an anticipation of a delivery of belief. Linus is every parent of a child with cancer. Linus is a stage IV patient returning to MD Anderson. It isn’t that Linus doesn’t hear the Peanuts gang mocking him, and it most certainly isn’t that Linus doesn’t want to trick or treat. To be sure, Linus takes all of that in but is instead drunk with hope that no one can dare call false because they don’t know any better.

The night in the Pumpkin patch is the perfect allegory for a season of disease treatment. Linus and Sally stay side by side, certain for the arrival of the “Great Pumpkin”. Friends come and mock their choice. They offer the option of leaving for something more fun. Linus at one point becomes so convinced he has in fact seen the Great Pumpkin (which is only Snoopy) he passes out. Eventually, weary from waiting, Sally, the primary caregiver of Linus, leaves in a heap of frustration. Linus seems sad, but continues to hold out all hope.

To me, the most touching and poignant moment of “It’s the Great Pumpkin, Charlie Brown” comes in a scene with no dialogue. Lucy, Linus’s sister, awakes at 4 am to realize Linus is still out in the pumpkin patch. Silently, she trudges out and assists the very cold and sleepy Linus to bed. She doesn’t gloat, she doesn’t ask for thanks. This character who has represented opposition, succombs to love for her brother and seemingly forgives him for his devotion to a hopeful notion.  Perhaps, she even loves him a little for it.

Many many days, I meet patients and families who remind me of Linus. Boldly optimistic and infatuated with hope. For the love of GOD, if I do anything right in my job, I never ever want to squash that hope or depress their inner Linus.  The challenge is how to break the news that the “Great Pumpkin” they thought was coming, isn’t, BUT there is still reason to stay in the patch with a heart filled with hope. The challenge is to remind Sally her time wasn’t wasted and to encourage Lucy to not wait until 4 am to show her kindness.

I love the Peanuts gang and I love working in Palliative care. And I encourage each of you reading, to spend a moment, in a pumpkin patch, along side Linus, with a heart full of hope.