Hurricanes, Storms, and Floods

Chuck Brodsky, is a folk singer/song writer who lives in Ashville, NC, that was recently devastated by the hurricane. Yesterday, he was interviewed on a radio station in Bethlehem, PA.  The DJ asked him if he had written anything about the hurricane. He said he was working on one, but it wasn't ready yet.  He was still working on the words and wasn't yet happy with the music.  However, the DJ convinced him to play it. Today, Chuck shared the recording with some of his friends and patrons. For me, it brought back a flood of memories that prompted this blog post

I was 11 years old when Hurricane Hazel destroyed much of our chicken farm.  We were chasing chickens cleaning up the debris for weeks. There were no injuries of lives lost there in South Jersey, and as a preteen it was an adventure, more than a tragedy.

Seven years later, we were hit by a three-day nor’easter. We were about 25 miles inland and only got soaked, but the coast wasn’t as lucky. Long Beach Island (LBI), which was 18 miles long and only three blocks wide, was devastated. On the third day, at high tide, the water cut the island into three pieces, flooding the entire area, killing 32 people who ignored evacuation warnings, and causing millions of dollars in damage. About 80% of the homes and businesses on the island were either destroyed or severely damaged.

Again, as a teenager, I had heard about it and seen it on the news, but it might as well be a million miles away from Richland.

 

A dozen years later, I found myself teaching 5th-grade science on LBI. During a unit on the digestive system, the kids were struggling to grasp the material. At the time, I knew about six guitar chords and decided to write a song about a fly named Charlie who flew down the throat of the manager of a Chicken Delite. Charlie was “the fly who never returned,” and naturally, it was set to the tune of the Kingston Trio’s M.T.A. The kids loved it, and when I gave them a test, I noticed some of them quietly singing the song to themselves. That’s when I realized I was onto something.

That one song led to about 2 dozen more, a few performances, a presentation at the state teacher’s conference, and even an invitation from the local community college to conduct workshops on songwriting for kids. Most of my songs were tied to curriculum topics, but I had written a few personal ones that either never saw the light of day or were shared only with my wife and kids. There was one exception, though.

My wife’s cousin, Bobby, was a Pennsylvania state trooper. Bobby was a big guy, and nothing seemed to rattle him. During his time in Naval Intelligence, he received a commendation for quick actions during an electrical fire on a communications plane. The report described how the plane dropped 10,000 feet so quickly that the changes in pressure and temperature caused rain and snow inside the cabin as he chopped out electrical circuits.

When I asked him why he refused the commendation, he shrugged and said, “I didn’t do it for the Navy. I did it to save my ass.” Bobby later became an FBI agent and earned other commendations, but I only saw him shaken once. That was after he was sent to Johnstown, Pennsylvania, the day after six dams on the Conemaugh River failed and flooded the town.



When I spoke with him a week later, he described the devastation in a way that showed how deeply it had affected him. He was in awe of the water’s power. Bobby had taken about six dozen photos of the aftermath and sent me copies. As he walked me through each picture, I took notes, realizing that his firsthand account of a national news story could help my students understand the incredible force of water on a personal level.

Using his photos and words, I created a slideshow and narrative about what happened, how it happened, and its aftermath. Unlike my other songs, this one wasn’t inspired by the curriculum but by raw emotion. I performed it once during a school-wide assembly and never played it again.

The Flood of '77

The Conemaugh River was quiet and calm
But nature would make it her slave.
And the heat of the day and the wind through the trees
Led the way to a watery grave.

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CHORUS-*
Many were killed and many were lost
And many must live with their fears.
We will never forget what happened that night.
Now the Valley is flooded with tears.
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It started to rain on that hot summer night.
The lightning turned night into day.
The water came down like never before.
And terror was heading this way.

CHORUS-

Just under 12 inches would fall through the night.
Ten hours was all it would take.
The water roared down from the mountains so high
Like a horrible, venous snake.
 
CHORUS-

The dams took their fill, but they just couldn't hold.
And by dawn six dams were to spill.
The waters would crush and the water would rip
And the waters would maim and would kill.

CHORUS-

This flood's not the first and it won't be the last
And the many who cheated the grave
Are safe 'till the time when nature will make
The Conemaugh river her slave.

My 2024 Bodyssey

Friends and family have accompanied me on a medical journey that began in January. As the year unfolded, the Facebook Amyloidosis-Wild Type-ATTRwt-wtATTR group became a shelter in the storm, offering me a sense of community and understanding. In reflecting on my experiences, I felt like Odysseus charting his long and perilous journey back to Ithaca. When I sat down to write about this odyssey, the result was a dry, overwhelming chronicle—a narrative that even the most dedicated reader might abandon, much like Odysseus' crew succumbing to the enchantment of the lotus-eaters. Seeking to transform my story into something more engaging, I turned to ChatGPT for help, hoping to breathe life into the telling of my Bodyssey.

In 2024, my medical journey has been nothing short of an epic odyssey—a Bodyssey, if you will. Just as Odysseus navigated his way home through trials, delays, and near disasters, I’ve spent the year traveling through a labyrinth of medical diagnoses, procedures, and appointments in search of my own version of home: stability and a clear path forward. From the stormy seas of congestive heart failure and cardiac amyloidosis to the siren calls of misdiagnosis and seemingly endless waits, each step has been a test of endurance, patience, and resolve. Like Odysseus, I’ve relied on the guidance of skilled specialists and my own advocacy to navigate these uncharted waters. While I still have a few more stops to make before my "homecoming," I’ve come to understand that this journey is as much about resilience as it is about finding answers. Through it all, this group is my Ithaca—a place where I no longer feel alone in the midst of this battle.

In late January, I encountered my first storm—a bout of pneumonia that lingered for over a month. Though I thought I’d weathered it, I soon found myself struggling with shortness of breath, as if the winds were against me. At my next appointment, a startling gain of 10 pounds in just 10 days signaled the approach of another tempest. My doctor ordered tests and prescribed Lasix to bail me out of what we soon learned was edema and congestive heart failure. That night, as I struggled to breathe lying down, it felt as though I was facing my Scylla and Charybdis. Fortunately, the Lasix worked, providing temporary calm, and the tests revealed a BNP level of 3160—my journey had truly begun.

This led to my first major checkpoint: the cardiologist, who after running tests suspected cardiac amyloidosis. Like Odysseus consulting an oracle, I began a diagnostic quest that would weave through delays, tests, and referrals. Bloodwork hinted at myeloma, and the suspected amyloidosis required confirmation. A cardiac MRI was ordered, but with the slow pace of the medical process in rural New Hampshire, I felt stranded, waiting weeks for appointments while the waves of uncertainty grew higher.

By late spring, I was referred to the Solinsky Cancer Center for oncology. Faced with a choice between an earlier appointment with a less experienced doctor and waiting longer for a specialist, I chose the first, knowing I could always seek a second opinion. The oncologist confirmed smoldering myeloma but acknowledged amyloidosis was outside her expertise. Another stop, another delay. As I waited for a bone marrow biopsy and PET scan, I felt the clock ticking louder, the sands of time slipping through my fingers.

The results were inconclusive but suggested smoldering myeloma with amyloidosis. The approach was "watchful waiting," but I felt I needed a more skilled navigator for this journey. By July, I sought the wisdom of Dana-Farber Institute in Boston—a bustling port compared to the slower pace I had endured. Within days, I met Dr. Vianna, whose confidence and clarity lifted the fog. His explanatory chart gave me a picture of what I have been and where I will be going. It is on the left half of my Facebook home page. He quickly referred me to Dr. Falk, an expert in amyloidosis, marking a pivotal moment in my Bodyssey.

Dr. Falk unraveled the mysteries of my medical past, connecting decades of symptoms to a single cause: wild-type ATTR amyloidosis. Tests including a PYP scan, cardiac biopsy, and mass spectrometry analysis by the Mayo clinic. The tests confirmed his suspicions, and a Vyndamax a pill a day, I had my treatment. But my journey wasn’t over. Alongside amyloidosis, atrial fibrillation and a bladder lesion added new challenges. When a scheduled cardioversion in New Hampshire was delayed due to a residual clot, Dr. Falk, like a trusted ally, stepped in to resolve it, restoring not just my heart’s rhythm but my hope.

By November, I had reached a turning point. With diagnoses in hand and a clearer map of the road ahead, I could finally see my way home. I had to decide on my crew for the next part of the journey. Dr. Falk arranged for local follow-ups with my trusted cardiologist, while Dr. Vianna referring me to Dr. Elizabeth O’Donnell, the head of the Center for Early Detection and Interception of Blood Cancers for oncological care, ensuring I had the best guides for this ongoing expedition. Just as Odysseus relied on the gods and his crew, I leaned on my team of specialists, grateful for their expertise.

Dr. O’Donnell, much like the other exceptional navigators I encountered at Dana-Farber, proved to be supremely equipped to guide me further along my Bodyssey. She drew a clear and reassuring chart of my smoldering myeloma, explaining that my risk of progression to multiple myeloma was low. The chart now sits alongside Dr. Vianna’s map. To confirm this, she ordered a comprehensive set of blood tests. However, the results were unreadable due to damage to the red blood cells—either a reflection of an underlying condition or a rare misstep along the way. Though this latest delay felt like another storm rising on the horizon, I have confidence that, like all the challenges before, I will endure and push forward, steadily navigating toward home.

This Bodyssey has been long and arduous, but each trial has taught me the value of persistence and the power of finding the right companions for the journey. Though my destination is still ahead, I am no longer lost at sea, and I know I’ll reach Ithaca—healthy, resilient, and ready for whatever lies beyond.