“Who Lives, Who Dies, Who Tells Your Story?”

In my last blog, I mentioned that if you look hard enough, Hamilton lyrics can be applied in the majority of life’s situations. I’m doubling-down on it, especially right now (does that get hyphenated? Hmm…). Ever since I first heard the soundtrack, the song, “Who Lives, Who Dies, Who Tells Your Story?” has resonated with me:

“And when you’re gone, who remembers your name?
Who keeps your flame?
Who tells your story?”

“And when my time is up, have I done enough?
Will they tell your story?”

“Oh, I can’t wait to see you again
It’s only a matter of time
Will they tell your story?
Who lives, who dies, who tells your story?

I often think of the difference between the written and the spoken word. I had English teachers in high school & college who invested so much into me and into my writing…I hope I’ve made them somewhat proud (and that they’re forgiving of the occasional run-on sentence and/or “excessive verbiage” that one of them often accused me of…and rightfully so…have you read my blogs?!?!?). I’m often told that I write as if I’m speaking to someone, that I’m a “conversant writer,” and I’ve always found that to be an interesting compliment. Like, is that a back-handed compliment? Is it a compliment at all? I’m actually not sure.

My goal is always to write with honesty, even when I contradict myself (which seems more common through these crazy, fluid, everything-is-uncertain time). I don’t mind it when someone messages me and says, “Hey, you’re wrong,” or when they respectfully disagree with me (I have one particular friend who excels at respectful disagreements. I look forward to them, and yes, he’s actually changed my mind on Facebook, so it DOES happen). I’m constantly learning, and I hope that’s my permanent state of being. I firmly believe that when we stop being honest, and we stop being open to other perspectives or to discussions with those whom we wouldn’t necessarily agree with, that we stop learning, and when we stop learning, we stop growing. Honesty and respect are two words we are sorely lacking in society these days, so I want to buckle in and hold on to them more tightly than ever before…

The written word leaves a legacy—it’s the opportunity for us to claim our narratives, for us to leave our mark somewhere, even if it’s just in cyberspace. Every stroke of the keyboard is an indelible impression on the universe that may someday disappear, but with the retention of the digital world, probably not completely. Our Twitter feed, our Facebook statuses…every single one of them is marked in the annals of the digital history of the world. That’s insane—especially when I consider just how many idiotic posts I’ve made and/or “liked” over the years. It gives us an opportunity to truly think before we post: How will this affect my job? How will this affect my family? How does this reflect my faith?

Someone once told me to never end a blog on a bad note—to always try to find a way to end it with hope. I took her advice to heart, and I’ve tried to do that in every situation. I haven’t always succeeded, but sometimes, forcing myself to refocus and to view life through a lens of hope has been such an incredible healing process. Even when I’m drowning in my own cynicism, and I want to wallow in whatever pathetic state I’m in, I have to stop. It’s about His story and how He’s working in and through my life….even when I’m being “pathetic.” He Still Works—through all of us.

I have found myself thinking about the lyrics of Hamilton, and about the concept of legacies, for a few weeks now. It’s not because I have some kind of morbid fascination with death (in spite of how much of it is inundating our media these days). I think it’s because the older I get, the more I realize how short time gets. Days fly by, one bleeding into another, and it feels like it’s going even faster in the wake of COVID-19. I’m on my hamster wheel of work-home-work-home-work-weekend-work, and it feels both exhausting and never-ending. The needs are never met, the questions aren’t getting answered, and there’s no stability, so it seems especially draining. There’s no time to stop—to just stop—and to process before something else comes along to upset the apple cart (THERE IS NO CART! AND THE APPLES ARE FALLING EVERYWHEEERRRRE!). Murders in the St. Louis area are up by 30%, and there’s no justice. The nation is fractured and broken, and we’re on the cusp of an election that would take an act of God to be peaceful (please, God, do something). We are speeding along an Autobahn of chaos, and there is nothing stopping the insanity (that we can see).

The anxiety builds…and it’s tangible.

Time is shorter in unsettled waters…

What stays?

“Who lives, who dies, who tells Your story?”

I want to.

I hope that I have.

For me, the spoken word gets me into trouble. My lack of a filter combined with a face that physically can’t stop emoting bundles together to create some kind of idiotic verbal Thunderdome. I swear far too easily (a lazy man’s way of expression), I ramble too much, and I struggle with interrupting people. I’ll say it—I’m obnoxious (at times). The spoken word is fleeting & annoying…No one remembers your spoken words, but they sure as heck remember their impression of you based on what you said. I hate to think about what people think of me and of what I represent, based on verbal conversations.

The written word is permanent, and WILL be used against you…

So, how do you want it to be used?

To answer Hamilton’s questions…

I don’t care who remembers my name….have I written in such a way that people remember the Name of Jesus? The Hope that He brings?

Have I kept His flame burning throughout what I write? Will my own words be enough to convict me, if my faith becomes prosecutable? Have I lived a life of clear faith, or have I been satisfied with a lukewarm life of treading water?

 “I ask myself, what would you do if you had more time?
The Lord, in His kindness
He gives me what you always wanted
He gives me more time…”

Have I done enough? Have I told Your story? Have I glorified Your Name?

I’ll keep writing “like I’m running out of time.”

It’s not enough.

 

*Photo Credit: Hamilton magnets by HeyThatsCuteStudio on Etsy–Shop St. Louis! Shop Single Mom!

 

Hurry Up and Wait, AKA, “It’s Allllll Right.”

Some of you may have caught that back in February, my thyroid cancer decided to make a comeback. In typical “Cassidy” fashion, my sense of timing was AWESOME, and as the country was shutting down from COVID-19 in March, I was running back and forth to the hospital to have injections and scans done (Thyrogen injections and RAI with a full-body scan, for those that understand this garbage). This was all set up after my tumor markers (which were 0.00 back in December, which is why BJC decided to release me from monitoring for 3 years back in January ’20) jumped up to 0.7 in February. That may seem like a nominal amount to some, but in my case, it was not a great sign.
So, I had the full body scan done, and just like the last time I went through the test back in 2018, the full body scan was negative. Unlike in 2018 (when my labs were pretty clear), the labs said the cancer was present, but the scan didn’t pick it up (I have cloaking cells. Very Star Trek). In that case, the line of care is to repeat the labs and check the markers, and based on those changes, possibly to graduate to a PET scan and (I hope) eventual surgery to remove the threat (in my case, it’s a few lymph nodes in my neck that have been suspiciously enlarged for the last few years. Large lymph nodes with clean labs = No big deal. Large lymph nodes with positive labs = Kind of a big deal). I know it might sound crazy, but these lymph nodes have been a thorn in my side since my original diagnosis back in 2015. I’d really like to get them out of my body. I don’t know if taking them out will reduce the chances of the cancer showing up elsewhere, but either way, they stress me out, so I want them gone.
My endocrinologist said that if my tumor markers have gone up to 1.0, we’ll move on to the PET scan. I put off getting the tests done until the absolute last possible minute, which was this morning…
Labs are completed…so now, we wait.
I think the hardest part of any medical decision/result is the waiting. It’s like, “Let’s hurry up and get this done…but wait until your insurance approves it,” or, “let’s hurry up and get this done…but wait until the results come in, then we’ll do another test, then we’ll wait some more, and eventually, we’ll have answer…maybe…but that answer may just be that we monitor the condition, so yeah, our treatment advice is just to keep waiting (even though you feel like you have a ticking time bomb in your neck).”
Man, I don’t DO well in the waiting–haven’t we already established that, Lord?!?! Like, YOU KNOW I don’t wait well. I’m not saying that I’m going to sit here and worry until I get the test results, because I’m not going to LET myself say that–I’m going to argue with myself and pray for peace. I’m not going to worry. There’s enough worry in the world, and worry stresses out every body system. It doesn’t MATTER what the test results are–God is still in control, I’m not going to die from this, and it’s going to be okay. It’s the easiest kind of cancer to treat–so much so, that there are some that debate whether or not it’s an actual cancer (although how that’s debatable, I do not know). It really is the stress in the waiting, and the stress in the process, that’s the worst.
I have a friend right now that has metastatic breast cancer (and her treatment during COVID-19 has been terrible–I think the medical industry has let their standard of care drop significantly in the wake of trying to prevent the spread of the disease. Patients are still people, and they still need actual care). We were emailing yesterday, and she said something that really caught my heart: “I just want to feel normal again.”
I’ve said those words. I think anyone who’s been through a major medical issue has said those words, and the truth is, the day you received your diagnosis, your “normal” changed. You don’t look at life through the same lens. People can choose to let it define them, to make it part of their identity. I don’t believe that’s a healthy approach (although you do you–whatever it takes to get through it, do it). To me, it’s not a badge.  I told my friend that it’s part of my story, but it’s absolutely NOT who I am, and it’s not something I candidly speak about to just anyone (although here I am, blogging away. Yeah, I see that.). I think doctors let it define you–every time I go into a medical office, I get 3 things: History of congestive heart failure. History of thyroid cancer. History of diabetes. Every single other thing that has/can go on, is looked at through those lenses, regardless of what I say. That can be frustrating, but I know now to anticipate it. I can live my life with cancer in the background; doctors can’t treat me without considering the history at the forefront. I get it.
But as a human being (and I say “being,” meaning that “as a present, focused individual”), and as someone who says they believe in a Creator Who defines them, cancer/other medical issues are a consequence of living in a fallen world. They don’t reflect Him, and they don’t reflect Who He sees me as. Jesus loves Cassidy. Yes, He knows Cassidy the Cancer Patient, but He Loves Me as who He made me to be, and who He made me to be is whole.
So, that’s how I identify–I identify in hope as someone who’s jumped through the hoops and has come through the other side, unscathed. I might be scarred, but I’m not burned; that might not make sense to you, but that’s okay. The hardest thing for me to deal with through this resurgence of cancer cells is anger, and I’ll admit that it’s still an issue–but I’m not mad at God. I’m aggravated at the Enemy. Cancer didn’t come from God. It came from Satan, and he sucks, so yeah–I’m mad at him. I’m mad at weirdo-genetics and my own laziness, and the frustration of the American healthcare system, and the cost of the procedures, and the feeling like my own sin caused this to happen to me (that’s a lie from the pit of Hell. God is NOT sitting in Heaven with a Smite button. I believe in pleading the Blood of Jesus over sins for my redemption, so no–I’m not being punished by God with cancer. People that teach that kind of religious garbage need a swift kick in the head with the book of James. That’s a whole ‘nother conversation).
God does not look at us through a lens of sin or of sickness. He sees us through His Son, and He sees us through Love, so even though I’m angry at my present situation, I am grateful and I believe that He knows what He is doing. I think my best course of action is to get these rebellious lymph nodes removed. I’ve caught myself pleading my case for that to God, and I have realized that it will be a hard pill to swallow if He says, “no.” That will mean I’m back to square one with a treatment plan, and that I’m back on the hamster wheel of, “hurry up and wait” for another 3-5 years (which may happen if I get the nodes removed. My hope is that if I get the nodes removed, then we can just do periodic lab work instead of ultrasounds and scans).
Part of the new “normal” after a medical diagnosis is relearning how your body is going to function; it’s learning new medications and side effects, and how you need to treat yourself in regards to them. It’s learning the signs of when you’ve pushed things too far, and of listening to your body. It’s educating yourself and your loved ones to hopefully understand and extend grace when you’re not yourself, and it’s part of finding out how to be YOURself, when things can come along chemically, that try to alter that. It’s learning how to reach out when you’re frustrated or sad, and to find someone who can and will listen without judgement. It’s learning to ask for help, even if you may be a person that hates doing so. Asking for help is not a sign of weakness (I’ll say that again, for the people in the back: ASKING FOR HELP IS NOT A SIGN OF WEAKNESS. Thank you.).
Part of the new “normal” is learning to handle a load of fear, impatience, and apprehension that comes at you from every side–from well-meaning friends and family; from physicians; and from yourself (just think of them as these guys: Fear, Impatience, Apprehension–bloodthirsty little hyenas).
shenzi_banza_Ed_disney-villain-sidekicks
I’ll definitely admit to struggling in this department. Once the “C” word is in your vocabulary, it stays. Some days, it’s a Hollywood marquis; other days, it’s a whisper in the back of your mind. When I’m not in active treatment, it’s usually just a whisper. My daily struggles involve the thyroid replacement meds and the HRT–one missed or mistimed medication can wreck me for days, so I have to have constant organization to remember to stay on top of those things. And because my memory skills aren’t what they used to be (age, meds, oxygen loss, etc.), I have mental systems in place to try to keep things straight, but sometimes, I make mistakes (For anyone who’s on a regiment of multiple medications, I highly recommend PillPack. It makes things SO much easier!!! And they handle vitamins, too, which is nice). Fear, impatience, and apprehension are not from God, so we (I) have to come to a place where we recognize those feelings as they’re coming on, take a stand, and lay them at His feet. Easier said, than done.
And that brings me back to today…The labs are done.
He truly is in the waiting….And in the waiting, we (I) take deep breaths; I focus on knowing that it will all be okay; I pray that God would provide clear answers and direction; and I pray that I will hear Him clearly…
Some people would say, “Well, why don’t you just pray for healing?” Sometimes I think it takes more faith to believe for a healing, than it does to pray for a resolution. I think that’s another blog I will eventually be able to write–there’s a lot to unpack, there.
Right now, we wait. And like my sister’s macaw likes to say, it will be “allllllll right.”
🙂
Hey, if a bird can get it, so can I. 🙂
scully

Cardiology Update!!!!

So, for any of y’all that don’t know, back in 2006, I delivered my daughter Hannah via emergency C-section due to severe preeclampsia.

Long story short, my physician was a third-generation OB/GYN who had basically written off my complaints of being short of breath during my second and third trimester. My daughter was delivered at 34 weeks, and the preeclampsia was “supposed” to resolve…except it got worse. I wound up in full congestive heart failure due to peripartum cardiomyopathy and pulmonary hypertension. My left ventricle blew up like a balloon–it was 3x the size of the rest of my heart, and my lungs were full of fluid. In the first night after my diagnosis, if I remember correctly, they removed 30 pounds of fluid from my body that I had retained. Dealing with that, post C-section? Not cool.

As most of you know, my daughter passed away at 29 days of age, due to Late-Onset Group B Strep and bacterial meningitis. Her cause of death was not due to my heart failure-it was a completely unrelated issue. We were told for years that due to the extent of the damage my heart had gone through, that we should never have another child….but we did not believe them. Cardiologist after cardiologist refused to see me as a patient, until Dr. Michael Paul, perinatologist at Mo-Bap, referred me to Dr. Robert Kopitsky, who did the right tests and discovered that miraculously, my heart had recovered to running at 50-55%, which was completely normal! I had no scarring, no permanent damage, and I was cleared to get pregnant with my son. It was the best news I’d ever heard!

Through my pregnancy with Jericho, my heart was closely monitored, and I was admitted to Mo-Bap at 32 weeks along. At that point, my cardiac function was already less than 30%. It continued to decline, and the decision was made to deliver early once again. I had excellent care, and my miracle baby was born! My heart was still an issue, and remained closely monitored & medicated for the next few years.

In 2016, I had an echocardiogram performed, and my cardiologist (I’d had to find a new doctor due to insurance changes) put my estimated cardiac function at 40-45%. That’s not bad, but it’s not normal; however, my cardiologist said it was acceptable and to be happy with it, “because you’re stuck there. I don’t think you’ll see those numbers improve.'”

And you know what? I was happy with that. I mean, c’mon, I almost died–twice! I’m happy with what I can get!!!! I took my regular meds and considered myself blessed!

Last month, my new PCP said it was time to check on my heart again. I’ve had some issues with stress, headaches, and back pain, so she wanted to rule anything out. My cardiologist agreed, so last week, I went in for a new echo. I got the phone call from his nurse today, as I was getting ready to leave my office.

MY HEART FUNCTION IS AT 60%!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m completely floored–the nurse said, “We just don’t see that. We don’t see those numbers with people with your history. Someone is looking out for you, for sure.” HA!!!!! Ya’ THINK?!?!?!?

My mind is blown. Like, I wasn’t even praying about it–I just accepted 40-45% and went on my way. Subconsciously, I think I was writing off even trying to exercise or anything, because why bother if I’m “stuck?” I come from a long family history of crappy hearts, so I just took it for granted that this is my life.

BUT IT’S NOT.

God takes over and answers prayers when we don’t even ask. He works miracles that we don’t expect or anticipate. David & I are in this season of struggle, where things have been extremely stressful. Yet in this, over and over again, I keep seeing little things, and big things, and random things, that remind me that God is watching. He is PRESENT. He meets needs we didn’t even know that we had. He loves us, He works in our lives unexpectedly, AND HE STILL WORKS MIRACLES!!!

Spiritually, mentally, and now physically (multiple times!), my heart has been broken and repaired in miraculous ways. I know it may sound dramatic to say, but I will shout this testimony from the ROOFTOPS, y’all, because I know my God is in the business of healing hearts.

“My heart overflows with a good theme; I address my verses to the King! My tongue is the pen of a ready writer. You are fairer than the sons of men; Grace is poured upon Your lips; Therefore, God has blessed You forever.”–Ps. 45:1-2, NASB