E.C. Stilson's Blog, page 31

An Ironic Jam Session

 I traipsed down the street, like the Pied Piper. Well, maybe “traipsed” is a bit strong—but I did have my violin and people did come closer as I played.

I’d gone to a music festival with a dear friend. Some say he makes suits for a living, some say he works for the CIA…all I know is that he placated me that day—and it was awesome.  He smiled as I pulled out my fiddle. 

“Will you walk up Main with me?”

“Sure!” he said because it’s a rare person who says ‘no’ to someone with cancer.

I planned to jump in with every band we passed—what was the worst that could happen?

 

It’s just that cancer has robbed me of a lot of dreams. I’ve opened for some pretty big bands: Shanandoah… Cracker… Some obscure Christian bands you’ve probably heard hit songs from. I’ve played for thousands—where my fingers danced under the brightest colored lights and my heart beat faster as each fiddle solo approached. Crowds cheered, people sang along—and almost everyone danced…even me.

But I had to stop playing gigs because I can’t stand for long anymore. I don’t even have the stamina to sit for more than a few hours. I can’t drive far to reach an audience. And lately, even hearing some old songs on the radio causes a sadness in my heart that I can’t quite explain.

So, my friend—the unconfirmed CIA legend—helped me “traipse” up Main. The first band didn’t seem enthused to see me, so I played quietly as we skirted by. I tried fighting the sadness. 

Maybe my time with music had passed…just like my life is passing. Those glorious musical moments were gone.

Then, as we stood in an audience surrounding another band, the bassist looked out and smiled. “Hey, Blue!” He said, pointing to my hair. 

Was the bassist of Rail City Jazz seriously pointing to me?

“Blue! Get up here!”

So, I excitedly went on stage, and those Samaritans gave me a solo. I could’ve cried as we played because they had no idea what kind thing they’d just done for someone who’d been losing hope….

It wasn’t until a couple of weeks later that I checked their Facebook page. 

“Friends,” their latest post read, “it saddens us to announce that Brady Meline, Phillip's wife, died on Sunday after many years of suffering.” I read the words and nearly dropped my coffee. I frantically found her obituary and discovered that she too had battled stage 4 cancer!

I shut down my computer and stared out the window, stunned that they’d just helped a stranger with cancer, right before losing someone to the same dreadful disease.

A Reunion Imposter

 Will my life end like an unplugged clock or the slow decline of a poorly wound watch? I wondered this as we drove up the canyon to my 20-year high school reunion. 

A table rested there, clad with photos and memories from the 14 class members who have already died (two from cancer and 12 from drugs or suicide). According to some doctors, my picture could be on that table for the next reunion…. It felt too sobering—especially since I could’ve died from sepsis just last week. Only a few more hours and I would’ve made it to the hospital too late. There’s something about just missing death: it’s haunting.

I worried these thoughts might overshadow the night, but after Mike and I arrived at the reunion, so many wonderful surprises waited for us. Mike taught some friends of mine how to do the lawnmower dance, the sprinkler, the shopping cart, and the sea walk. He drank smuggled booze from a backpack concealed under the table, bonded with one of my favorite friends from “back in the day,” and got hit on by someone who came across the room just to meet him.

And as people hugged me and said “hello,” a jolt of love catapulted me back into the moment. I felt real pride for a friend who followed his dreams and became a well-known chef in Park City. I beamed as a woman talked about her children. And I felt true excitement while making a new friend who recently moved home to be closer to their kids. 

That one girl was there, you know the one who gets even prettier with time. The smartest kid in school talked about his epic software job. The school nerd seemed to be the only one filling out “high school bingo,” and of course there was that one guy who still doesn’t know my name.

But I was happy to show Mike off and to remember again how important it is to live in the moment. I reconnected with some legends and have made plans to see them again soon. I can hardly wait to hear more of their stories, taste some gourmet food, and go to coffee with people who only got better with time.

It was an unforgettable night—especially when Mike told someone he’d taken chemistry with them. Nothing like having an imposter at my own reunion. 🤣

Progress Is Progress

 Do you ever feel like you’re in a whirlpool, getting sucked to some inescapable vortex, where you can never get out again?

That’s how I felt on Tuesday night, after a horrendous bout with sepsis. 

It’s not these “blips” that are so terrifying, it’s the recovery after.  Like a pair of thawing feet, beating and throbbing back to life—each deadly moment only seems especially horrendous as I’m recovering. 

I actually think I’ve handled all of this quite well…but I’m embarrassed to say that on Tuesday I did not.

Visitors were restricted due to COVID-19 concerns. A CNA mistook me for a surgical patient (probably because of how I walk) and put an alarm on my bed so that if the weight changed, she would know—so she could put me back in bed. And as I stared at the darkening room around me, the walls surged closer and everything collapsed in on me. I thought about the removal of my L3 vertebrae (and how torturous that had been), the liver failure (and constant vomiting and severe weight loss), and now the sepsis (more painful than anything before)…. And I felt so stuck in a whirlpool of debilitating fear that I actually had a panic attack.

My hand shook as I hit the “call nurse” button, and luckily my nurse (and not the CNA) came in. She turned the weighted alarm off on my bed (since I was actually an ambulatory patient), walked me down the hall to a nice chair, and even gave me black tea in a little styrofoam cup. “I’m so sorry you’re going through all of this. I can’t even imagine.”

She left me there for as long as I wanted. I pulled out my phone and put on whatever breathing exercise  I could find on YouTube—closed my eyes and listened.

The next day, Mike came to see me first thing, and I threw my arms around him and never wanted to let go. He brought the light of the world flooding around him, and I could hardly believe the difference it made just seeing him, hearing his laugh, pressing my forehead against his. I started bawling then because it hit me how the elderly population must feel when loved ones don’t come to see them. The thought broke my heart, and I couldn’t stop crying as Mike scooped me up and held me in the hospital bed.

“Sweetheart! Sweetheart! What’s wrong?”

“I just want to go home. I’m tired of being in these different hospitals. I just want to go home.”

They let me out later that afternoon. The kids were so excited to hug me that I could hardly believe it. And suddenly all of the suffering in the world was worth feeling their joy and holding their arms around me. 

Everything looked beautiful. I didn’t care anymore about the vortex that we’re honestly all heading toward. Instead, we cranked up the radio, drove home from Montana to Idaho, and once we got home I curled up in bed and slept for a long time. The bumps through this journey are hard, but the rewards are greater. Like the doctor said, “It’s three steps forward, two steps backward. Progress is progress.”

Simple Words to Tie Up a Life

 Trey and I stood on the first floor of a hotel in Bannack, Montana—a ghost town, part of the Lewis and Clark Trail in 1806 before being declared the First Capital Territory of Montana in 1864.

We both stared out the window, wondering who had been there before us, and I felt proud to be introducing my 13-year-old son to a real part of history. 

But as I looked out the window, a strange memory hit me from 10 years before. A proprietor purchased an old building in Deadwood, South Dakota, where Butch Cassidy himself allegedly visited. The owner asked me to play my violin in the upper level, and a strange song had come to me. With every note I could almost see the old drapes materializing and a newly shined floor suddenly gleaming. People played cards, laughed, and fought rising tempers. 

I remembered and smiled. But what’s odd is that as I stood with Trey in Bannack, Montana, another song came to me—a sweeping melody….

I’m still not sure why, but I started singing it, slowly, surely, and I could almost imagine the town, rife with excitement. The street filled with colorful characters, horses corralled down the road. I could imagine it more vividly with each note. I was there—in my imagination—and it WAS beautiful.

Then Trey clutched my hand. “Mom! Stop. Stop singing.” He said shadows shifted and light had moved down the hotel’s hallway.

So, Trey and I left the nearly 200-year-old hotel and joined two of his siblings and Mike who stood outside of the building. We visited a cemetery after that, where the oldest person was born in 1809.

“It’s strange what they put on the headstones,” Trey said. “Doctor. Preacher. Daughter of Mr. Matthew Peat….”

“It is strange! How people choose to identify themselves, especially at the end. It makes you wonder, what gives your own life meaning. It’s clear what gave them meaning.”

I looked at him so proudly. He’s such a deep thinking young man. I know something truly “good” and “kind” will define him.

Then we left. And it wasn’t until the next day that I became hospitalized in Bozeman—the closest town with a hospital. “You’re lucky you came in when you did,” the doctor said. “A few more hours and it could have been…devastating. You have sepsis—an infection in your blood. You’ll be just fine now, but you always need to be near a hospital. When you have cancer—and are in a situation like yours—there are certain things you just can’t do.”

I heard his words and took them to heart. I do need to be more careful. But after visiting hours ended, and I sat alone in the hospital room, I instantly thought about the ghost town and all of those old graves. It’s not my time yet—and hopefully won’t be for a long time—but when it is, what will define me? What set of words will tie up my simple life?

Fiddler in a Parking Lot

 “There is a guy playing a violin in the Fred Meyer parking lot. You should come join him.” My friend’s text made me smile because she knows me pretty well.

“Hey,” I yelled to my kids in the other room, “you wanna go on an adventure?” If cancer has taught me anything, it’s to enjoy the good days.

Only one of my kids sounded remotely interested because…well, teenagers. 

So, we grabbed my fiddle, hopped into Sky’s car, and eventually found a woman who stood by a violin case in the Fred Meyer parking lot.

“You want to jam?” I asked with so much excitement.

“No English,” she said. “Italian.”

I was MADE for moments like this! I’ve been taking Italian lessons, so I told her I speak a little Italian. 

But unfortunately I couldn’t understand much of what she said. So, I pulled out my phone and used Google Translate. 

We conversed that way, typing questions and answers into the translator on our phones—and it was actually kind of fun! Then, things got serious….

She said they’d fallen on hard times—so now, they were standing in this parking lot, asking for help as her husband fiddled for tips. And to think, this brave woman couldn’t even speak English.

I guess right before we got there, her husband had left to see a mechanic because their car broke down. She had health problems on top of everything. And, they didn’t have enough money for rent.

I typed back, “I’m so sorry. I don’t know exactly what you’re going through, but I understand that life is hard. I have stage 4 cancer, and I actually came to see you to get my mind off of things…by helping someone else.”

I’m still not sure why, but as she read the Italian translation, she broke out crying and asked if she could hug me. So we stood there, both of us hugging and crying in the parking lot. My daughter, Sky, just looked at us and smiled.

After that, I asked the woman if I could play a song for her. As the notes crescendoed, the winds seemed to shift and the weather didn’t have the same bite to it. 

I hoped—with everything in me—that this change symbolized a better future for this sweet woman and her family. 

I packed up my violin, and although Sky and I didn’t have much to give, we left the woman with what we had.

“Buona fortuna,” I said (good luck).

“Grazie.” She smiled, and we left her there, standing with her sign, still asking for help.

I hope the winds of change will find her…maybe they’ll find both of us.

My Sister Wrote a Book!

 I’m so proud of my sister! Go here to check out her newly released book. Free download until Sept. 3 🤗

Check it out here: “Lean Think”

Withstanding the Test of Time

It all started in middle school. B.H. and I had talked numerous times, and honestly I thought he was one of the most intelligent and insightful people I’d ever met. Later, in high school, we joked during ceramics and woodshop. He even jumped in to help when I cut my thumb in half on a table saw and my blood splattered most of the class. 

It wasn’t until an assembly that I turned into a bad friend and said something I’d regret forever.

“I had sex,” he confided. “Do you think I’ll go to Hell?”

Instead of really listening or showing empathy, I regurgitated something I’d heard about unbelievers in church. “Yes…. You’ll go to Hell.”

His face fell in disappointment and so much sadness rested there, as if he’d expected far more from me. And I cried later—when no one could see my tears. I couldn’t stand the memory of hurting someone I respected so much.

Time passed. Some kids started calling me “Bible Girl,” a condescending term because I carried my Bible everywhere and read it until the cover fell off. 

Not long before I graduated, my life spiraled out of control. One Monday morning people talked as if I couldn’t hear. “Did you hear about Bible Girl? … Elisa lost her virginity.”

I put my hand by my neck and tried to calm my breathing. Their judgement stayed behind me, though, as I deliberated over what I’d done. Hot tears split across my cheek as I heard another kid. “So, you aren’t a virgin,” he said, then winked at me.

I could hardly see anything. The ceilings and walls pulsed closer. I couldn’t find a way out. I had irrevocably ruined my own life….

I’m still not sure at what point I saw B.H. after this, but I’ll never forget his words. “When you find yourself,” he’d said, “it’ll be a beautiful thing. There’s so much inside to be proud of. Who cares what you’ve done? Who cares what people think? The real you, beyond those stupid mistakes, that person is beautiful and that’s the person I hope you’ll become.”

I didn’t deserve kindness—especially from him—despite that, he showed compassion when no one else did.

My twenty-year reunion is in a couple of weeks, and it’s brought back a lot of memories. I’ve honestly been terrified to attend until something amazing happened on Saturday…. B.H. came to Idaho from back East! 

In 2020 he discovered that I have cancer. His gorgeous mom has even helped me at the hospital. I never imagined all of this would transpire or that my dear childhood friend would come and visit!

We talked like no time had passed. And after over 20 years, I was finally able to apologize for the cruel words I said so long ago.

“Elisa, even back then I didn’t take it to heart. I knew you too well.” And then he went on to explain how happy he was to see me—to see how I’ve turned out. And instead of saying, “When you find yourself,” he said how great it IS to see the person he hoped I would become.

“And you’re everything I always knew you’d be!” I said, pride in my voice. Sure he’s married a gorgeous woman and become incredibly educated and successful…but that wasn’t what I meant. B.H. never lost sight of what really matters: showing kindness and compassion when people need it most. Even now when I’m struggling not to die from cancer, he decided to come visit, entertain my family, and give us an unforgettable day.

I’m so grateful for friendships that withstand the test of time and for people who are so fiercely good at heart that they always stay themselves, unhindered by experiences…and regrets.

I’m actually looking forward to the reunion now. I’ll have to let you know how it goes. It’s time to forget about the hurts of the past and just move forward to a hopeful future.

For more about this time in my life and how I ran away to be a street musician in Hawaii, check out “Bible Girl.”

Photo by Sarah Chai from Pexels

What Does It Feel Like Having Cancer?

 What does it feel like having stage 4 cancer? 

People are curious and even scared, maybe that’s why I hear this question so much.

 

Three years ago, doctors removed a purple mole from my wrist, taking muscle and a little bone too. But many times stage 2B melanoma returns within five years—and that’s what happened to me two years later.

I first had an odd pain that shot from my lower back down my right leg; the doctors thought it was sciatic-related. But from June-October of 2020 I began losing the use of my leg and could only fall asleep in the bathtub, surrounded by scalding water. It also felt as if a massive festering wound stretched across my back—in need of a vat of Neosporin.

After surgeons discovered that tumors had begun growing inside of my bones, and changing the basic flexibility of my spine, they decided to remove an entire vertebrae and fuse my L1-5. A new pain started then, when I walked, rolled over, and stood for too long. 

Then the infusions (immunotherapy) started. This, coupled with the cancer, has caused flulike symptoms, aches, fatigue, and fogginess. This starts for me around 2-3 p.m. with some regularity, but can begin earlier when I’ve physical exerted myself too much.

The liver failure, from the immunotherapy caused diarrhea and vomiting so extreme that I began throwing up an alarming amount of blood. (I’m on blood thinners because of blood clots I got during two surgeries—probably why I needed a blood transfusion in 2020 and why it’s easy to throw up blood.)

All of this came to mind because I got the second COVID shot yesterday. My oncologist hadn’t been overly eager for me to get it since I’m “already going through so much.” I’ve had a fever on and off all day, but what’s intriguing is how much these vaccination side effects feel like cancer! I’m talking about the chills, flulike symptoms (or rigors as a NP at Huntsman says), nausea, aches, and fatigue.

This isn’t political, but for me, I’m grateful to have gotten vaccinated. My oncologist’s nurse told me today, “That’s why we’ve wanted you to stay home. An exposure to COVID could have been fatal.”

I blinked hard, so shocked with the reality. An hour ago I still had a low-grade fever, but I honestly felt compelled to ask Mike to help me write this post. I feel so bad for anyone who’s had COVID. I’m hoping I’ll be feeling my “regular” cancer stuff tomorrow. It’s astounding what we can get used to living with; I guess that’s what I’ve done. This new baseline required some adjustments, but this fever makes me grateful for the “normal” moments.

Cancer isn’t something to be scared of—people simply find the strength to carry on. But it is something to be proactive about. I wish I would’ve had that mole removed when my mom first told me too. My life would be completely different right now if I had.

Hope

 The nausea and vomiting have returned, along with a fear that I’ll start throwing up blood like I did when my liver failed—and that things will get worse. “I don’t want to lose my ability to talk and sing,” I finally told Mike while waiting for scan results. The results would determine if I needed radiation on my neck and throat.

“You just need to stay positive,” Mike said even though I’ve caught him crying when the kids weren’t around and he thought I’d fallen asleep. My chest physically hurt as I listened to him, knowing he needed anything but for me to acknowledge that I’d heard him—my larger than life man—in the throes of despair. I knew then that the fear had finally gotten to him. It’s the same thing that’ll eat me faster than cancer if I let it.

To combat this, I’ve been attending three different churches that aren’t even the same religion. Thanks to Zoom one is in Hollywood, New York, and Pocatello, Idaho. Each initial service shocked me because (thanks to friends) they’re praying for me. My name runs across display screens, and it lines bulletins. It’s so humbling—this absolute kindness—hard to fathom. And I figure, why not “up my chances,” right?! The more prayers the better. Last December, I even sent a letter to some Brazilian monks! They didn’t respond, but hey, at least I tried.

“I feel like I’m breaking,” I told Mike that night. “When is it too much? I just don’t know if I can do radiation again. Plus, if I lose my voice, I can’t nag you.”

Mike broke out laughing and smiled. “Elisa, you should see what’s on your nightstand.”

So I went into our bedroom and found a letter with international stamps on it. With anxious hands, I opened the envelope. After eight months, the monks had actually written back—in Spanish! 

It took forever, but I finally typed most of the words into Google Translate. They explained that the monks had done a remote spiritual “operation” on me in July and that I would see the results soon.

“You will win,” the translation read. “Do not be discouraged, persist a little longer. Do not cultivate pessimism. Focus on doing good. Forget the suggestions of destructive fear. Keep going even while avoiding the shadow of your own mistakes. Advance even through tears.”

My phone dinged, interrupting my thoughts; the scan results were in. I could read the virtual report or wait to hear directly from the doctor at my next appointment. I clicked “review test results”—because patience is a virtue I lack. And as I waited for the file to load, I thought of all the prayers and support from so many people….

Mike entered the room. “The results are in,” I said, and he sat down by me.

I read as soon as the words surfaced on my phone. “The tumors remain the same—stable except for the tumor in my neck…” My voice shook, not even sounding like my own.

“Yeah?” Mike implored.

I dropped my phone on the bed and started sobbing. “The tumor in my neck…is shrinking.”

We hugged each other so tightly. We’re still not free and clear, but this is a start. Other than my brain tumor’s response to radiation, this is the first sign that the infusions are working. For me, this is the first tangible sign of hope.

The Good Ones

 “My name is Jay.” The tan man smiled. I could picture what he probably looked like years ago as a surfer…before cancer got to him.

“What are you in for?” I asked. Sometimes this question doesn’t go over well—it’s how I test people. Luckily, Jay proved to be one of the good ones.

“Stage four bladder cancer. You?”

“Stage four melanoma.” This show-and-tell session made the waiting room actually fun!

“You look pretty good for having cancer,” he said.

“So do you! What can we say,” I grinned, “we’re awesome!”

He chuckled then started talking about his tumors, referring to them as “these guys,” and I instantly knew I liked Jay. “Look at this rash and all these scabs I keep getting! It’s crazy what we go through to keep on livin’. And the whole time ‘these guys’ just keep eating away at my body. I’ve been fighting this dang thing for 8 years—“

“Seriously?! I can’t imagine 8 years. I’ve been dealing with mine for a year, and I’m already tired!”

“You’re so strong though,” he said. “I can see it! And you’re positive. You have exactly what you need to get through this!” Then he told me about all of the drugs and trials he’s been on. “It’s amazing I’m still here. They told me I was gonna die when they first diagnosed me. So don’t lose hope, kid.”

“What are you fighting so hard for? What’s your reason?” I asked.

“I want to see my granddaughter grow up.”

I nodded. “I want to see my kids grow up too.”  We stayed quiet for a moment. “You know…” I sighed, “I had the strangest dream that I bargained with death. I always wanted five more years, and then—just five more years. Until it had been decades and my body was sick beyond repair.”

“Ain’t that the truth. Your dream was right; w always want more.”

A nurse came around the corner and said it was almost time to go back.

“Wait,” Jay said, “I need to tell you something important!”

“Okay?” I responded.

“I thought I beat this thing.” His eyes pleaded with me as the words left his mouth. “I had three good years when I knew I should travel and do all the things I’d always wanted. But I put it off, and now the cancer is back. I worry I’m getting really close to the end.”

I wanted to hug him, tell him he could still take those trips. But his elbows were far too bony, and his legs looked frail beyond comprehension. Maybe after 8 years of fighting…his fight is almost over.

“I’m just saying if you ever feel up to it, do those things! Take those trips! Don’t let anyone hold you back. Don’t have those regrets…like I do. When you feel good, just live.”

After that I went back to an hour-long MRI, and the whole time I thought about the spunky man I’d met in the waiting room. I sure hope I’ll see him again.