Tuesday, July 30, 2024

Watching Olympians Overcome


 Mike and I drove down to Utah, so grateful to have a room at the Hope Lodge. It’s an absolutely gorgeous facility, and we felt extremely lucky to get a room where they have wonderful amenities and even an amazing kitchen area with a fancy coffee maker! Any Huntsman patient who lives over 60 miles from the cancer center can apply for free lodging there, and we lucked out. 


I’ve been nervous to do this because I know there are people who need the help much more than we do and are in much worse situations. I didn’t want to take a room from someone else. “You’re the last on the list for that day,” the receptionist told me. “You’re not taking it from anyone. And you need this just as much as anyone else. I’ve seen your appointments and your diagnosis.” The woman had been given access to my chart to verify my situation and approve my stay. “You’re going through a lot.”


I tried keeping the tears from my voice. “Thank you for saying that. We’re so grateful for the help—we’ll take the room.”


Mike and I checked into the Hope Lodge, and they gave me a gift bag along with the CUTEST stuffed animal. Then we went to the hospital, and I even got to play my violin for fellow patients. 


It was the most wonderful morning, but then things went downhill. 


I met with my main oncologist, and he got so concerned after getting my labs and speaking with me that he actually hospitalized me. 


“But I was supposed to get treatments today,” I said. “And we got a room at the Hope Lodge… Can’t I just stay there tonight and come to the E.R. if things get worse?”


“Elisa, the tumor in your L2 might be pushing on your spinal cord. You need an emergency MRI. I’m sorry. I know this is hard. But if something like that is happening, we’ll need to do surgery to prevent permanent nerve damage.”


My heart clenched, and within a couple of hours, I rested in a hospital bed, waiting for MRI results. “Excuse me?” a night nurse came in. I’d spoke with him earlier, and he said it was a surprisingly slow night. “Do you mind if I ask you something?” he asked.


“Sure,” I said. 


“It’s just… You seem like you’re handling things so well. And life can be hard even for people who aren’t fighting cancer.”


I looked at him, wondering what hardship he might be facing. I know most problems aren’t as obvious as terminal cancer, but that doesn’t make other things any easier. Life can be hard. In fact, the hardest thing I’ve ever experienced wasn’t this fight against cancer. It was when my baby died years and years ago. You never know what things other people might be facing—things we can’t readily see.


“How do you cope?” he finally asked. 


“I play the violin,” I said, “and when I first started, I sounded terrible. But no matter what, I told myself that I had to keep going.” I sighed. “Quitting wasn’t an option… So, I guess I cope by looking at my end-goal. I want more time with my family. And no matter how hard any of this might be, I’m fighting for even one more second with them. I remember learning to play the violin, and how incredible it felt when I could finally play.” I took a deep breath. “Even though doctors say this is terminal, at least I know I can look back and say I did my best. I tried. There will be a time when I’ll have to say that I’m done. Cancer won’t ’win,’ but maybe I’ll call it a draw. But until then, I have to tell myself I can’t quit. I just have to keep going. That’s all.”


He nodded. And thank goodness, he seemed somehow heartened even though I was still having a tough time myself. 


“I do have really tough times though,” I admitted, wanting him to know. “I cried earlier. I was supposed to go on a date with my husband tonight. But… after getting hospitalized, I had to take a deep breath and tell myself to find the good things around me. One of the good things tonight is that I got to talk with you.”


He gave me a huge smile, and I hoped that whatever he was facing, he’d find hope somewhere in the mix.


When I did get discharged (thank goodness the tumor isn’t pressing on my spinal cord!), Mike wanted to brighten my day, and he surprised me. “I know we didn’t get to go on a date, but we can coin-flip to see where we can stop by on our way home. Even if you just want to take a nap in a park, we can find something fun.”


“Really?” He always seems to know what’ll get my mind off of things. 


He took out a coin, and we flipped to go East, up toward Park City. So, we went to watch skiers train at the Olympic training area. 


Athletes there put on snow boots, carry skis, and walk up several flights of stairs until they ski off a massive jump that leads right into a swimming pool. Mike and I watched as skier after skier face-planted, bellyflopped, and plummeted into the water. Then, despite being sopping wet, they still climbed up the flights of stairs repeatedly—just for a chance to perfect a flip they could eventually land on a real snowy slope. 


As we watched them, I went from feeling a bit dismal to quite invigorated. If these young athletes can keep going despite epic fails, serious fatigue, and various other hardships… If they can get up over and over just for the hope of getting a gold medal, impressing the world, and making a name for themselves, then I can keep fighting for more time with my family.


The advice I gave that young nurse was the best I had at the time, but I felt it even more after watching the Olympians get up even after they’d failed repeatedly. That’s sometimes how life can feel. It can kick us down and make us want to give up. But no matter what we’re facing, it’s so important to remember how strong we are. We can do this. We can overcome hardships and come out shining on the other side. Even in my situation… Sure I don’t know where my road will lead, BUT the best I can do is keep moving forward. If those Olympians can persevere despite odds stacked against them, then we can keep going too. Like my dad says, “The key to overcoming, is to just keep going. It’s as simple as that.”

Tuesday, July 16, 2024

Making a Difference for the People We Love



 When I was younger, I’d wonder if my life truly mattered, but then I’d stop worrying and think, “I still have time. Maybe I’ll do something to make my family proud next year. Then my life will matter.” Although my husband and kids have been proud over various accomplishments, it never seemed to be enough for me. My brother is a mechanical engineer who’s even worked at Harvard. My sister is a chemist. My parents are both equally impressive, and I… Well, I’m not. The greatest thing I’ve done is simply raise my kids and try being kind to the people around me. That doesn’t look amazing on a resume though, and searching for significance, it seemed subpar—especially after doctors told me I’d die from cancer.


Now the cancer is getting even worse in my spine, and (to fight it) we’ll start a new treatment regime on July 25. This specific regime put me into liver failure before, and it would be easy to feel scared and think death is looming closer. What if I go into liver failure again, but this time I die? These are real possibilities, and they can happen far too quickly. Just because I try to see the good, that doesn’t mean there aren’t hard days. Sometimes CHOOSING joy takes work.


“Mike?” I asked my husband. “You’ve done so many incredible things in your life. Are there ever times when even you wonder if your life has mattered?”


He appeared surprised. “I haven’t done so many incredible things.” He chuckled and smiled at me with so much love. “Only you and the kids think that.” Then my humble man paused, deep in thought. “I bet almost everyone questions if they’ve mattered—at least at one time or another—but I think a better thing to ask is if you’ve made a difference for the people around you.” He stopped what he’d been doing and wrapped his arms around me. “You matter to me. You matter to the kids. Elisa, you matter so much more than you might realize.”


“Mike, you’re the most wonderful man.” And I stayed in his arms for the longest time just hoping he knows how much I appreciate everything about him.


The next day, I cried pretty hard and told myself I’m somehow strong enough for all this crap. G-d doesn’t give us what we can’t handle, so G-d must think I’m a bad*ass. I was in the middle of this ugly-cry fest when my phone rang, and it was one of the two people I what to make really proud: my dad!


“Elisa,” he said, “I got a book at a lending library. I’ve been reading it every day, little by little. It’s pretty hilarious—about medical humor.” He described a couple of stories in the anthology and broke out laughing at one point. “Anyway, I turned the page today, and there you were! A story by ‘EC Stilson.’ I didn’t know you were published in a book like this.”


My dad lives in Arizona, and both of us could hardly believe this turn of events. “I was so shocked. I had to call your mom into the room. It shows what a small world we live in. There you are in Idaho, and I found a book you’re in all the way in Arizona.” 


“And the publishing company is owned by a man from Japan!” We laughed because it really was from around the world.


Then my stoic dad, who rarely talks about his emotions, actually told me how proud he is of my writing AND how I’ve handled cancer. He got a little choked up at that point, saying how grateful he is for the memories we have together and that he always feels so loved when I’m around. That final part meant more than anything else he could’ve said.


My outlook seems so different now that we had this conversation that I’ve needed since I was a little girl: My dad is actually proud… But more than that, I make him feel valued and loved. I make my dad feel like a better person when I’m around. That is a pretty astounding compliment. Mike was right, asking if we’ve made a difference for the people around us is a good question—something I want to start asking myself each day. That makes me feel like I have mattered because I matter to the people I love the most.


(Pic above: Me and my dad)

Who knew an anthology I got published in over a decade ago would help facilitate a talk I’ve needed my whole life. It really put things in perspective and helped me remember why I’ve been fighting so hard to stay alive in the first place. It is strange how our lives end up and how experiences come around one way or another. 


Doctors never expected me to live this long, but I’m so grateful to still be here. I can’t imagine missing out on all of these incredible moments, like this life-changing conversation I had with my dad. Somehow I think maybe he needed it too.

Tuesday, July 9, 2024

A Lesson in Trust


Mike doesn't believe in G-d, and rather than let our differing beliefs tear us apart, they've knit us closer together. We discuss various religions and debate how people find faith through hardship. I have told him, though, how ironic his atheism is; after all, he's the greatest example of G-d's love in MY life. And oddly, I think my current plight has made Mike want to believe in the randomness of the universe even more.


Despite how opposite our beliefs may be, Mike has admitted that I do have some pretty strange things happen to me, and today was not an exception.

A couple of days ago, I told my mom a story my rabbi once shared. "A pauper wanted to marry a princess," I said, "but the king needed to know if this would-be suitor was even worthy, so he sent him on a quest. 'Find the one thing that can make a rich man weep with sadness and a poor man cry tears of joy.' The pauper searched for years but finally returned empty handed and dejected. It wasn't until he stood at the castle gates that he found the answer. A beggar gave him a ring with the words..." My voice faltered. And at this point in the story—as I relayed this entire thing to my mom, my mind froze, and I completely forgot the words that were written on the ring! We broke out laughing—and Mike chuckled in the other room because, apparently, he'd been listening too.

No matter how much I racked my brain, I couldn’t remember the riddle’s answer. I thought about it during dinner last night and then today as I thought about the word trust. I’ve been really trying to fully place trust in G-d, believing that there’s a reason for everything. But trust is a terribly hard word to understand AND it’s even tougher to put into action. I’d just been thinking about all of this when Mike bounded into the house, looking like an energetic golden Lab—the best of humanity. “You got some mail!” he beamed. And after I opened the package, we both literally sat dumbstruck. 

“You’ve had some bizarre things happen,” he said. “But this is up there.”

“Does it make you believe in G-d?” I asked. 

“No… But I have to admit that sometimes weird things do go on. And I can’t explain why.”

I don’t need to change Mike’s mind. G-d knows I’m the last person who should be judging anyone. I’m currently in the process of converting to Judaism, and some people aren’t the happiest about that. But “vivre et laisser vivre,” right? At least one would hope. I’m tired of being judged, so I don’t want to inflict my own beliefs on anyone else. I’m simply curious.

Anyway, I held up a card that had accompanied the package we received in the mail. Then I read the words to Mike:

In times of uncertainty, remember the wisdom of King Solomon, whose ring bore the timeless letters of “This too shall pass.” Life's journey often leads us through unexpected twists and turns. Trust that in whatever place you find yourself, you are meant to be. Know that every step has a purpose. For only when it's dark can you see the stars shine. Let this ring be a gentle reminder. You may not feel in control over your life, but you are deeply loved by the One who is.


Engraved on the ring in both Hebrew and English it reads: THIS TOO SHALL PASS—the exact words from the ring in the story that I just told my mom. Not only does this feel like a godwink, but it seems like a beautiful reminder that G-d has a plan for each and every one of us. The reason this could make a rich man weep is because riches don’t last. But the poor man would cry tears of joy knowing that “this too shall pass.” Not even hardships can last forever, and that’s a pretty powerful thing to remember when life feels at its worst.


Maybe my fight against cancer is a lesson in trust, but I feel like G-d might be telling me that everything will be okay—one way or another. Whether I do die from melanoma (like doctors keep saying) or if I miraculously beat this, at least I feel like G-d will be by me each step of the way. The good, the “bad,” it’ll all be all right because somehow there really is a plan—for all of us.


(The ring is from TheHonestJewelerShop.com (Honest Jeweler) if you want to see a picture of it.)

Monday, July 1, 2024

It's Not Over Yet

 When someone faces hardships, we assume 100% of people will be kind. Unfortunately, this isn't the case. While 99.999% of people might be compassionate and helpful, a few insensitive things are often said. I learned this when my baby died at Primary Children's Hospital in 2003. We had to take him off of life support, and it was the most horrific moment of my life. Much harder than my battle against cancer, tougher than getting a divorce or being in an abusive relationship, having a child die was hellacious. 


Yet, after his funeral, a woman came over and said, "He would still be here if you'd had more faith." My sister even received an anonymous letter detailing how my baby was born with defects because someone in our family had "sinned." I don't think people always intend for these things to be hurtful. In fact, they're often searching for answers themselves. None of us truly know what happens after we die. It's one of the ultimate mysteries which can mystify and terrify people. I think this is why I lost a couple of friends; they simply don't like facing death at all, let alone personally knowing someone who's fighting it.


In 2020, after oncologists diagnosed me with terminal cancer, my first thoughts weren't even about my own death. They were fears regarding telling my children, husband, and other family members about this diagnosis. I didn't want my children to encounter such hardship at such young ages, and I didn't want to disappoint my parents and siblings. For such a long time, I hoped for perfection. I know I'm deeply flawed, but at least I can try to improve. But having cancer... that's not something to just brush under a rug. If I told my family, they would know beyond a doubt that something was wrong with me. I'd gotten burned too many times. I'd gone fake tanning when I shouldn't have. I'd made innumerable mistakes. And it wasn't just that, but I've been through enough terrible things to know that .001% of people might make insensitive comments to me AND my family. And sure enough, they have. I've had people tell us once again that this happened because of sins. Or if we just had a little bit more faith... If I could be more positive. If I could eat better. If I could trust in: Medicine... G-d... Black Salve... Mushroom Tea... Ivermectine. The list goes on.


I've explained before how tired I've become, especially since the cancer in my L2 is growing and the pain often makes it hard to sleep. Although my oncologist and care team have come up with an incredible new treatment plan, it does feel like a Herculean task to keep going to get treatments.

Anyway, I was just about to go to sleep the other night when I couldn't stop the cycle of sad thoughts. I thought about my plight and what it's done to my loved ones. All of it crashed around me: just too much. After a while of this, I must've really worn myself out because, by some miracle, I actually fell asleep. That's when I ended up having the most bizarre dream.


A man came and said he needed to talk with me. Surprisingly, he looked strikingly like my 16-year-old son, Trey! 

He stood tall and so strong. His short hair framed his face perfectly, and I couldn't get over how handsome he was. I studied his features. He must've been about 21, yet he held the wisdom of ages in those piercing blue eyes. He finally turned to me, showing compassion with every movement, and he said, "You can't go. You're not done."

"Not done with what?" I rebuffed.


"You're not done with what you need to do," he responded, and at that exact moment, I knew he was my little baby who died over 21 years ago. 


When I woke up, I felt so much stronger, with a firm resolve to keep fighting. I told my second-oldest daughter about this when she came over to visit: "I don't know what the heck I'm supposed to do, Sky."


"You know, Mom," she said, "even just being here for us kids, that's enough."


Tears filled my eyes because she was completely right. "That really is," I said. "That is enough." Sometimes just putting one foot in front of the other... Sometimes, the fact that we're even trying... That. Is. Enough. Showing my loved ones how much I care about them is the most important thing I can do with my time now. THAT is my biggest dream, that they'll all know how much I love—and believe in—them.


I've written before about the word accomplished. You know when you see someone who's extremely impressive and people will say, "They're so accomplished." Well, I decided to look up the etymology of the word "accomplished." It originally described a person who simply does what they say they'll do. This could be big or small. But the point is that they finish. So that's what I'm looking at today. Instead of shooting for the stars, I'm happy to be taking steps at all, to continue getting treatments like I promised my husband and our children. I might not be the most impressive person who's done mindboggling things like walking on the moon, but I can say I do what I say I will, and I try. In that sense, maybe I am accomplished, and that feels pretty great.


The funny thing is that not long after this, as my mom and I took out a sack of garbage, we spotted a laminated egg-shaped card in some weeds. My mom picked it up, and her face lit up. "Elisa, this must be for you." Then she read the words aloud. "Find your dream. It's the pursuit of the dream that heals you." She smiled so big. "I guess it's a quote from someone named Billy Mills."


I took the card, and after displaying it in my kitchen, I thought about how I need to throw out the terrible thoughts I've kept filed away in my mind. It's time to stay strong for my loved ones and myself too. My baby said it's not my time to go. So I better keep fighting. It's like a quote my dad loves: "It's not over 'til it's over." So I better enjoy every second of life that I can. We all should.