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.

Bereavement Service

Hello.  My name is Jenny Buckley and I am one of the Weinstein Hospice team members. Many of you may have met me on your first exposure to Weinstein and let me say with sincerity that I am so grateful for the trust you shared with me by going forward with our program.  I am humbled to be among you again today.

In my many years of hospice experience, I have, admittedly, developed some phrases I am guilty of repeating often. If I was the nurse that came to see you first, I may have, in fact,  said these things to you. For example, I often say, it is never anyone’s best day when I show up. I get that. Even though I know the tremendous gifts hospice care can provide to patients and families, I understand that it is only with a heavy heart that one contemplates the need for hospice care. I am also guilty of repeatedly saying that while I have a bag of tricks that can treat a myriad of symptoms, there is no quick fix for the inherent sadness in this process. I get that, too.

In those first meetings, I understand that a lot of what I might say won’t penetrate and that words fail in such moments of import.

But words… words are my thing. They are the currency I use to try and express my empathy and my desire to assist.  

Today, sharing this time with you, with my heart full and my throat tight, I have words to share. Words that again may fail, but I’d like to share, nevertheless.

The most important thing I want to say is thank you. Thank you for sharing your loved one with us. It was a privilege. Regardless of the length of time they spent on our program, our team is grateful for the time we spent with them.

Our time together may have been difficult. It may be hard to remember. People think hospice care is sad for the people that do it and, at times, it certainly can be. But all of us on the Weinstein team would be quick to acknowledge that our days, our experiences produce a surreal level of gratitude. We understand the privilege of what you’ve invited us to share and we want you to know that. We are blessed with observing some of the most incredible and beautiful acts of humanity in our work that many other healthcare professionals don’t get to see. And, while not always easy, we see our work as tasking us with grabbing gratitude in our own lives because we can have lunch with Mom, take a walk with our sister on the beach, kiss our spouse goodnight.

There’s something else that is very important to say. Your loved one- the person you shared with us- the person who’s memory brought you here today- was very special to us.

Very. Very. Special.

As we read the names of the souls we served last year, you may wonder or worry that your loved one, the precious person you delivered to us for care, was lost in the numbers.

I assure you they were not.

Each person for whom we cared, each soul that we honor today, impacted us and changed us.

Each person for whom we cared, and the family that surrounded them, taught us something new that helped us to better care for the next patient and family with whom we interacted.

Your loved one has not been nor will not be forgotten. They are forever woven into the fabric of Weinstein Hospice and their memory is for a blessing.

Last week I had the privilege of attending the GHPCO conference. GHPCO is an acronym for the Georgia Hospice and Palliative Care organization. In my career I’ve attended NHPCO, GHPCO, CAPC and have undergone ELNEC training. I’m an RN, BSN, with my CHPN certification. Basically, I’ve had the alphabet soup of end of life care training and education. Recently, however, I was exposed to a very beautiful lesson on grief and loss in a most unexpected place. It was a supracalifragilisticexpialadocious lesson, in fact.

Last month, my Mom and I went to see the new “Mary Poppins” movie. In case you missed it, allow me to provide a brief recap. Mary returns to the Banks family in the newly released version, except this time the Banks children are grown and Michael has children of his own. Mary returns with her unabashed confidence and competence only to find- or maybe because she already knew- that this young family greatly needs her help. Michael’s wife, the mother of the three children, has recently died and the Banks home, more specifically the Banks’ financial situation, is in disarray.

Early in the movie, the now grown Michael is seen in the attic looking for a very important document. He comes across a strand of pearls that belonged to his deceased wife and holds them in his hands. He begins a beautiful and touching song called “The Conversation”. His closing verse is the one that touched my heart. He sings:

    “I’ll carry on just like you told me,

    I say that like I have a choice,

    And though you are not here to hold  me

    In the echoes I can hear your voice.

    Still one question fills my day dear,

    The answer I’ve most longed to know

    Each moment since you went away dear

    My question, love, is

    Where’d you go……”

Where did you go? Where did you go, indeed. A painful question, to be sure. A common question, I can imagine.

Without stepping on anyone’s theology, our hero, Mary Poppins, suggests an answer several scenes later. As she is putting Michael’s children to bed at night, she senses their grief. Quite simply, John, Anna, and Georgie miss their Mom and they are also keenly aware of their father’s stress. With loving compassion, Mary sings a song that is, in fact, nominated for an Oscar tonight. Whether or not the song brings home the trophy, its message is certainly a winner. Looking out the bedroom window into a starry sky, Mary tells the children, “Nothing’s really left or lost without a trace, Nothing is gone forever only out of place”.

Her song concludes:

    “So when you need her touch and loving gaze,

    Gone but not forgotten is the perfect phrase

    Smiling from a star, that she makes glow

    Trust she’s always there

    Watching as you grow

    Find her in the place

    Where the lost things go”

Mary’s loving message, in my opinion, is right on point. She doesn’t suggest that anyone stop missing their loved one, she only offers a strategy to cope with the loss.

I can absolutely assure each of you that our team members, the ones you honored by inviting them into your home and shared a very sacred and intimate- and scary- time, often look for your loved one in the place where the lost things go. When our hearts get heavy with the question, “where’d you go” we seek to answer it by looking at the stars that they make glow, or in the breeze that feels so good on a warm day because gone but not forgotten is truly the perfect phrase.

And you know where else we find them? In you. In seeing you today as you carry on “just like they told you” (like you have a choice)  but still make time and place to honor their memory. We see them in your smiles- and in your tears. We absolutely feel them in your hugs.

Again, we thank you for sharing them. We have not forgotten them and we think what you did for them in their last days was extraordinarily brave. As the philosopher Ram Das most famously said, we are all just walking each other home. Thank you for letting us be a part of that journey.

Voting and Option C

It’s Election Day! Ya-hoo! The day that sets our country in the admirable place of demonstrating that our leaders are CHOSEN- BY THE PEOPLE! The citizens of our country hold the power and we are so excited to use it.

The privilege to vote is precious and sacred. History shows us the ways in which our ancestors battled for this incredible right. To not vote is perceived as a slap in the face to those who died for this right.

And yet, we still need to work tirelessly to encourage people to vote.

Today, around Georgia, everywhere I turned I saw people wearing the “I voted” Georgia Peach sticker. Turn out didn’t seem to be an issue. Add to the throes of early voters, I am thrilled by the number of people executing their right to vote.

GOD BLESS THE USA!

And yet, after months of political ads, robo calls, and social media posts, I found myself in an unlikeable place.

I.Don’t. Like. The. Choices.

I am going to say right here if you think this post is political, you are incorrect, and if you want to sway me, please don’t. You will be missing the point.

Choices are hard. Choices force us to pick a side, even when we are ill prepared to completely defend one side or the other. Throughout my life, I have struggled with this- I always find a way to make an argument for either side and decisions become difficult.

It’s all complicated.

And yet, Election Day forces us to break down the complication and MAKE A CHOICE. A defendable choice.

So many days, I have the privilege of meeting with patients and families who are facing a choice. In what I do, they often have to choose between continuing treatment (albeit sometimes futile) and electing hospice, and its “association” with ‘end of life care’.

Not an easy conversation, to be sure.

In the purest of scenarios, I sit in living rooms or at kitchen tables where votes are cast by people that don’t like the choices.  No one can blame them and yet they are forced to vote because no choice is a choice that comes with its own set of consequences.

They have to vote, even when they don’t like the choices.

Many days, I sit with patients and families, weighing out their options of pursuing further treatment versus accepting hospice care. I wish we didn’t place these decisions of burden on families who are already scared and a little desperate. So often, I have to explain Option A has consequences, Option B has consequences  and I, unfortunately, don’t have and Option C to offer.

Option C-it’s the one where we get all the choices without the side effects. It doesn’t exist. It is like the political candidate who cares for all the social issues but takes care of all the financial ones, too.

Option C is getting all the cancer treatment with the 24/7 support for symptoms and family issues.

Option C is sheltering in place, with guarantees for safety.

Option C is a high risk birth with promise for a perfect future.

Option C is the Unicorn.

New Bumper Sticker: 2020 Unicorn for President. Leprechaun for VP….

In so many hard things, it is hard to vote, painful actually, because Option C, Candidate Unicorn, is not on the ballot.

Friends, HOPEspotters, I feel the struggle. Wanting to vote and searching for Option C. I am fortified by the brave with whom I’ve worked that have voted with the understanding that no choice is a choice. I am inspired by their courage to weigh what Option A vs Option B will do for them and they choose. I wholly get the feeling of, “I don’t like the choices” and yet, they vote.

A vote cast with a fearful and yet optimistic heart is the bravest vote of all. One that would make our ancestors proud.

P.S. Option C does exist. It co-exists. It’s called Faith...

The Eve

What were you doing 17 years ago tonight?

For many of us, it’s hard to remember what we were doing 17 days ago or even 17 minutes ago,  much less 17 years. Who can keep up with the details of daily life that long ago? What does it even matter?

17 years ago tonight I was home fixing dinner for my husband and father in law. I had been to the Atlanta zoo that day with my friend and her children. 17 years ago tonight was completely uneventful.

17 years ago tomorrow, it was a beautiful September day. I got up to go to work and listened to the radio on the way to my first patient. I heard about an airplane hitting the twin towers and was sad to think about such an accident. When I arrived at my patient’s apartment, in her memory care room, I watched, with her, the second plane hit the tower and we knew that this was no accident. Despite her dementia and loss of speech, this beautiful lady held my hand with the understanding of someone who had watched Pearl Harbor and knew this was an infamous day.

17 years ago tomorrow was September 11, 2001. The day that marks the worst attacks on American soil in history. 17 years is not enough time to wrap our heads around the evil that penetrated that day nor is it ever going to be able to provide reason or excuse for the thousands of innocents murdered.

At the 9/11 museum, in NYC, there is a beautiful wall of blue tiles that stands in front of the vault of yet to be identified body parts from that day. Each tile is from a slightly different dye lot, honoring each individual victim of that day. The wall has a quote that states, “No day shall erase you from the memory of time”. The blue on the wall is reminiscent of the beautiful blue sky on the morning of September 11th.

17 years ago tomorrow, the sky was so blue that no one could possibly imagine the horror that we were about to experience. The terror that would haunt us today.

17 years ago tomorrow changed each of us.  As a nation, we experienced unimaginable horror. At the same time, we enjoyed unprecedented unity. There are images from those days that we will never forget and there are some details that have been lost in trauma.

Did they really fly airplanes into our office buildings?

Did thousands of innocents die from box cutters?

Were we really that hated?

How can we possibly recover?

17 years ago tomorrow was an awful day. It was also a day that bears hideous similarity to what so many families facing advanced disease experience.

For many, there is a blue sky day. A doctor’s appointment. Just a check up.

There is no recollection of the night before because there was nothing that seemed noteworthy about it. And yet the not noteworthy night before will be the last time anything seemed normal- and one will wonder why that night didn’t seem more special in light of what the next day would bring..

“I’m sorry, we have to run more tests…”. “The results appear to be malignant…” “Treatment doesn’t appear to be having the success we hoped..”

Planes hitting buildings. Unimaginable outcomes with devastating consequences.

In my history of meeting patients  and families dealing with devastating circumstances, I can’t recall ONE who said, “I saw it coming”. Each and every one woke up to a blue sky before they received news that was catastrophic. None of them, not a single one, knew the night before, that the next day would be the day of no turning back. Even for those who might have suspected, the reality is shocking.

Cancer is a terrorist.

17 years ago tonight, I was naive to terrorism. 17 years ago tomorrow my whole world permanently shifted.

Tomorrow I will honor those that died 17 years ago. And I will give thanks for safety and perspective.

And then I will say a special prayer for those, who might be experiencing their “night before”and don’t even know it.