thyroid cancer

“You Are Loved.”

/ Cassidy S. Cooley / Leave a comment

I woke up this morning to this note on the bathroom sink:

“Hey, Mom, Jericho here. Just wanted you to know, take care of yourself and that you are loved. Love, Jericho.”

This note has now been permanently scanned into my online drive and tacked to the corkboard in my office where it shall remain in perpetuity.

This note may wind up eventually tattooed somewhere that remains to be seen.

This note both undoes me & revives me simultaneously, in the best & worst ways…

My son was 2 years old when I was diagnosed with thyroid cancer. Thyroid cancer is the “good kind” of cancer, they say–it’s the kind where they remove the issue, supplement you with Thyroid Replacement Hormones, and send you on your merry way. Those that know me well, know this has not been my journey; I’ve had clinically-detectable thyroid cancer for almost 10 years now. “Clinically detectable” means that it’s still there (“residual activity in thyroid bed”), but not in so many levels that they can go in and physically remove it. I liken it to having a time-bomb in your neck, just waiting for it to either die or explode. It can be a mental process, for lack of a better word, to ignore it. On the plus side, thyroid cancer is notoriously slowwwwww, so although my tumor markers have gone up-&-down over the years, I’ve never gone so high that I’ve had to have a second surgery (there are plenty of times where I’ve begged them to just take out the remaining lymph nodes in my neck so that there wouldn’t be anywhere else for those booger cells to hide!!!).

It’s not uncommon for me to say the removal of my thyroid ruined my life. Getting my medicine titrated correctly has been a process, especially with the weight loss; the initial determination to figure out what medicine would work for me, darn near killed me. The thought is to keep my TSH levels so suppressed, that it makes an unfriendly environment for the tumor markers, & they’ll eventually, hopefully, just DIE (can we get on with it already?!?) Issues with diabetes, sleep apnea, & my legs/feet have been ongoing since my thyroid was removed…but the worst thing that’s happened since my thyroidectomy has been, hands down, the FATIGUE.

This is not like, “ohmygosh, I’m TIRED.” This is not like, “I’ve been up all night with a crying baby & now I have to go to work,” tired. This is not even like, “it’s finals’ week & I have 4 papers, 3 tests, and a volcano to make,” tired. This is literally like some evil being sneaks up behind you, cuts off your ankles & throws a lead cloak over you as you fall to the ground, dead in the water, can’t move/think/function, TIRED, & it hits out of nowhere. I usually say, “oh, look, someone’s unplugged me,” & down I go…

I’m truckin’ along yesterday, got home from church, started working on the laundry (I normally do this on Saturday, but we went to an art show on Saturday, so please don’t judge me for doing chores on a Sunday), hung up a few things in the sunroom, & stopped to admire my work….BOOM. I’m on the couch. “Just give me a few minutes.”

My son brought me a blanket & a pillow. David made some dinner. I laid there & took my few minutes. They both know how this goes–they know once it hits, I’m dead weight. I think they hate it as much as I do, because it’s not a good look to see your mom/wife deflate like a sad balloon.

It affects them as well, & I truly hate that.

I hate that I’ve had to cancel plans, or that I have to be so strict about weeknight activities (I can’t really do them, or there’s hell to pay the next day). I don’t like going to bed at 8:00pm. I have to stay disciplined about what I commit to, because there’s just no gas in the tank & I need to stay employed. Now that I’m back in an office full-time, I have to prioritize how much I do in my non-working hours, because otherwise, things get skewed. I have to be selfish with my time & protect it in ways I’ve never really committed to, before.

I now know that when I don’t establish & protect boundaries related to how I spend my time & energy, that fatigue leads to major issues—brain fog, sickness, impulse-control problems. My mental health swiftly declines, & I wind up in crisis mode, along with my family. It’s not just about my health–it’s about theirs, too–which is fuel for the need to protect myself and them. After what I went through last year, I realized that I had my priorities out-of-whack & I am grateful for the learning experience, even though it was painful. I will fiercely protect what I’ve learned, & I am trying to do what I need to so that I don’t have to repeat the process.

My son hasn’t had the experience of knowing me pre-thyroidectomy, & there’s a certain sadness that comes with that. He’s seen the fallout–the mental & physical struggle–& he’s learned compassion. Understanding is hard for him–he’s an only child, & he gets all of the attention & assistance he needs, so he doesn’t have a true understanding of what it’s like to have to figure things out on his own–but he’s learning sympathy (& that note just UNDID me–what a sweet kid he is!!!!!!!!!). My husband has been along for one heck of a ride; half of our marriage has been taken over in many ways by the collateral damage my thyroid cancer has caused. I’m not on this journey alone, & he’s been by my side. Our little household has rallied around me. It’s messier than I’d like for it to be, but it’s so full of love–that note from my son this morning was a huge, gigantic hug that reminded me that even when Monday morning slaps me in the face, I’m coming back home to people that love me, & it makes it all worth it.

I feel like a burden to my household, but I know that’s the enemy talking. God reminds me that I am loved, that I’m His, & that the sun is continuing to rise. He reminds me there is tremendous peace & hope with Him, & that He is using this journey to teach me new ways of relying on Him. He reminds me to hold onto my gratitude, & not to let the enemy twist my focus onto the things that frustrate me–that’s a waste of my energy, & that’s too precious to lose on something like that. Gratitude revives our spirits–it ‘s like in Monsters, Inc., where they find out that laughter is a better fuel than screaming.

We really get much farther in thinking about what we’re grateful for, than in what’s weighing us down.

In my last blog, I mentioned a few things that I’ve struggled with in the last 6 months or so, mostly related to some bitterness associated with a former friend. My therapist this week encouraged me to begin to focus on gratitude, & while I at first felt like I was being shamed for grieving all of the losses & relationship issues, I then realized she was correct: It is time to begin a season of gratitude. I am thankful for a great many things that had to do with that former friend. She led me to a time of employment that made a huge impact on my career & my self-esteem. Without that season, I wouldn’t have developed my personal mission statement. Without that season, I wouldn’t have befriended Jen, Jacque, & Stephen, three people who have changed my life. Without that season, I wouldn’t have been exposed to such a beautiful, diverse culture that I was privileged to be around in that place of employment.

Without that season & without those relationships, I wouldn’t have realized that I am worthy of so much–I am worthy of boundaries. I am worthy of standing up for myself. I am worthy, through Christ, of being fought for. That former friend led me to those three friends, who gave me the gift of solidarity. They teach me every day, along with my other friends, along with my husband and my son, that I Am Not Alone, & that life is GOOD, even when it’s hard.

When I am out of gas, when I can’t lift my head, I have a team of family & friends who point me to gratitude & that takes me to Jesus…and we can make it one more trip around the sun.

We got this.

He’s got me.

And I. Am. Loved.

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

/ Cassidy S. Cooley / Leave a comment
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

A Disjointed Hot Mess of Getting My Head On Straight, AKA, “Why Am I Posting After Midnight?!?”

/ Cassidy S. Cooley / Leave a comment

Doing that thing I’m never supposed to do…getting on the computer way too late at night, knowing it’s a bad idea but doing it anyway…

I’m quite sure someone will be offended by the time I finish processing whatever is pricking at my conscience, because as we all know, I process by writing and I’m dumb enough to put it online (“dumb enough?” Is it actually dumb? Or is it too genuine to be “comfortable?”).

I’m quite sure the Karens of the world will have their time clucking their tongues and clickety-clacking their keyboards to tell me how I’m not holy enough, or I’m not praying hard enough, or I’m not spiritual enough or whatever, and I’m sure they’re right, but that doesn’t make anyone feel any better, now does it?

KAREN

I’m not going to blame this on Mother’s Day (it sucked, don’t ask, and no, I don’t understand why. Grief is unpredictable, ‘k?). I’m not going to blame this on work stress (do I still have a job? Mandatory pay cuts? A cut in hours? All options, nothing decided, and we’re floating in a pool of what-the-heck-is-going-on?!?). I’m not going to blame this on COVID-19 (although I will tell you that my personal state of mental health is on the decline, if I’m being honest). I’m not going to blame this on the crappy remarks my husband made to me today, or that I made back to him (I don’t remember who started it, but we’re sick of being around each other right now, and I’m sick-to-death of sitting on the couch). I will blame this on the apparently 15 pounds worth of anxiety-eating I’ve done to cope with the last 9 weeks, and that falls squarely on my super-fat shoulders.

Now I’m ticked at myself for failing so horribly (really, what did I expect??!?!?  I’ve baked more in the past 9 weeks than I have ever before, during a non-Christmas season. David’s been doing all of the cooking, and he doesn’t know how to cook without going all Paula-Deen on everything, which is delicious, but terrible–and why I gained #20 right after we got married—and why I gained #15 being stuck in the house with him for 9 weeks, although we all know I could have gotten my fat rear up from the couch and made my own dang food. I didn’t, and now I feel horrible, I look like crap, and my blood pressure is through the roof). I have to put the brakes on EVERYTHING, and that sucks, because PEANUT M&MS ARE AMAZING, and no, David had nothing to do with those. Those are all on me…and on my hips.

I’m struggling with feeling really anxious, really sad, and really, really stressed out…and I know I’m not alone, but I feel like I am. I don’t feel like I can pick up a phone and tell anyone that I’m in a funk, because that’s not uplifting, and aren’t I supposed to be FRICKIN’ UPLIFTING?!?!?!  Because right now, all I am is a giant lead balloon in a forgiving pair of leggings and a piece of fried chicken.

I feel like a giant &$*%&$ failure in every possible facet of my life.

There–I said it. And now it’s permanently embedded into Cyberspace. CASSIDY FEELS LIKE A GIANT &(*$%&($ FAILURE.

Honey-LaBronx-Crying-Mascara

(We interrupt this rant to disclose that searching for a meme of a crying drag queen was enough to make me laugh. Those who know me know I love Jesus…and I also love drag queens. That’s an entirely different discussion. We digress.)

So, yes, much like the mascara on the photograph above, I feel like a failure/hot mess. The problem with getting something that sounds amazing (like working from home, or more sleep–is there EVER enough sleep?!? Not when you don’t have a thyroid, truth) is that over time, it becomes laced with uncertainties and eventually, tinged with paranoia. I’ve said for a few weeks now that everything feels very unsteady, and it’s not a good environment for me to try to live/work/be confronted with 24/7. Tension is building, and I’m not the only one. I’m internalizing more…I’m feeling more and more isolated and bleak and super-Don’t Touch-Me-ish (one can only be a landing mat for a projectile 7-year old without it taking a toll).

brak

David’s getting a shorter fuse. Jericho doesn’t want anything to do with homework and has turned into a screen addict who shrieks like he’s being beaten alive if we tell him the TV needs to be turned off (SERIOUSLY, PUPPET STEVE ON YOUTUBE, IF WE EVER MEET IN PERSON I AM SILENCING YOU WITH A GLUE GUN.). (And yes, KAREN, we know we did this. WE ARE TERRIBLE PARENTS, OKAY?!?!   I SAID IT!!!  Just add it to the reasons why I feel like a GIANT (*$&%(* FAILURE.) Going into this summer, my biggest fear is that if I don’t come up with some kind of schedule or curriculum, both of the guys in my house are going to get sucked into some weird vortex of TV/Legos/YouTube and I will never see any of them again…which is fine, because I will have buried myself with my headphones and my tablet, under a pile of blankets where I will binge watch “Drag Race” until I’ve eaten myself to death with the seemingly-endless bag of Peanut M&Ms that I have discovered. THEN the guys can watch my progress on television on “My 600lb Life,” and we’ll all feel like we’re learning about each other again. 

Yep…We’re not in our happy place.

Jericho has been spending a bit of time during the week at my parents’ house during our lockdown. I know that’s controversial, but I live in a 1,000sq. ft. townhouse. My parents live in a house that’s around 3x the size, out in the country, with a bigger backyard and far more to do outdoors. This gives me a bit of time to have some peace in my week (as I’m still working from home…good times) and for David to continue looking for a job (that’s another key point of stress. What do we do if he finds a job? There aren’t any childcare options right now. The “what ifs” are endless, right?). I’ve not seen my parents, as I’m stuck in “pause” regarding health issues right now (and every doctor I have is gonna be livid at the weight gain, so I’m already preparing to hear that lecture), so I miss them. I miss my job (does that make me a terrible mother? To say that I miss being at my office?!?  See, that’s another foothold for “mom guilt”–there are SO MANY.), and I truly, deeply miss my church (Zoom is meh.).

You know what?

The longer I sit here and type about how much everything sucks, the more I am reminded that THIS SUCKS FOR EVERYBODEEEEEE.

GROVER

I’m not special, you’re not special, and yeah, it’s okay for us to take a few minutes and gripe about it. From my blog history, it’s apparent that I’ve been griping about it for a few weeks, so yeah, I’m having some difficulties processing things and then dropping them. Whether that’s because I was raised by an Italian, or because I’m a vengeful harpy, who knows?

THIS SUCKS.

You can say it with me–it’s allowed. This is a safe place.

coronasucks

I know we’re hopefully coming to the end of the lockdown; just this week, I think I’ve officially got a true back-to-the-office date. I think we’ll get through this much more safely if people would get over themselves and wear a dang mask (they’re an “it” fashion accessory now, darling–you can even get them on Zulily!), we’d get through this a bit faster. I kinda think I may stick with wearing one during every flu season forever, because the flu I caught in February was WALKING DEATH, and I’m quite sure a face mask might have kept me from getting it…unless I got it from the germ magnet known as my child…hmm. But if people would just obey the CDC recommendations and wear a silly mask, what harm could it do? JUST DO IT, and get us out of this sooner!!!!!!

Just sitting down and writing things out is helpful for me–I know it’s oversharing, but at least by the end of this, I can sit here and say that my thought processes are linear. I’m not so scattered all over the place, getting slapped in the face by every emotion and feeling of failure that floats my way. I know it’s all a trick of the Enemy to get in my head and bury me–I hate to admit it, but it’s working, because I feel buried under all of this.

I can recognize the attack, but I’m truly so freaked out/worn out that all I can do is roll over and surrender. I haven’t yet, but I’m afraid that I will. I don’t feel like I’m strong enough to put my head up and to fight back, or even to pray enough to fight back. I can laugh at my own patheticness, but that doesn’t mean it doesn’t scare me.

The other night, I tried to pray for some kind of peace or relief. I prayed myself to sleep (which is kind of normal for me), but I wasn’t making any sense to myself. It was mostly just me saying, “Jesus…please.” That’s all I got.  My brain is such a mess that I can’t even talk to God naturally. Like, I’m having to tell myself, “Girl, get yourself together and TALK TO HIM!!!!”

But you know what?

I don’t have to get myself together to talk to Him.

I don’t have to sit down and write a blog about how I feel like an epic failure, because He knows how I feel and He knows the truth. He knows every insecurity and He remembers them ALL (I don’t even remember them all. That’s ridiculous.). I don’t have to get “linear” for Him, because He knows me, mess and all, and even though it’s hard for me to believe,

He loves me.

I am without a doubt, a mess.

queen

Most of the time, I don’t want to stop and try to sort me out, because IS THAT EVEN POSSIBLE?!?!?!?!?!?!?!?

grief

I love this graphic–I’ve seen it before, but it’s so perfect.  Grief isn’t something that exists in one moment, in one event of your life, regardless of how “huge” that moment is. Grief can be experienced during any kind of major transition, and baby, WE ARE GOING THROUGH TRANSITION. This whole lockdown experience is traumatic on many different levels, for many different people….for people who look like they have the “perfect” life, and for people who are in the trenches. We’re all unified by this one theme right now: STRESS.

There’s no coincidence that the word, “pandemic” and “panic” sound the same, and I think every time the word is spoken aloud, that energy goes into the atmosphere and we are in the thick of it!!! It’s oppressive, right?!?!  I can’t be the only one who feels like the sky weighs a million pounds right now.

Constant reminders in the media and the press of death, sadness, grief, fear…constant attacks on the mind that torment (and we all know who the author of torment is…stupid jerk). We’re getting hit from every angle by news that’s designed to destroy our morale and to basically fry our hope. I read an article from the Psychiatric Times that mentioned Camus’ The Plague. I’d forgotten about Camus, but from what I remember, he was an existentialist who had no hope. The story was about a town that lost half of its inhabitants due to a plague (thus, the title. Nice.). The article talks about the weight of “death anxiety,” which sounds a bit dramatic (even to me) and about how there is trauma in the persistent, unrelenting state that we’re in right now.

No wonder I feel like crap.

It’s literally in the atmosphere. UGH.

When all of this started, I thought, “YES, GURRL!!!!  You will read the books! You’ll start a workout plan!  You’ll learn new things and GET AWESOME,” not, “Your life will be boring as h*ll, your kid will mutiny, and you’ll get fat again.” I started the books…I WILL get through at least one of them. And yes, I have undertaken some creative projects (lots of painting. Too many flamingos…as if there could EVER be too many flamingos. Baking…which I like way too much of….and sewing! I’m learning to sew, and yes, my face masks are DOPE.). I was doing really well at forcing my household to go on daily walks with me until last week’s cold snap, and I can tell that was a bad idea, because walking really helps my back. So that’s getting restarted, for sure.

But truth be told, I haven’t done all of the things I’d hoped, so it adds a layer to being disappointed with myself…can I just write on all of the mirrors that GOD IS NOT DISAPPOINTED WITH ME?!? My weight or my achievements and/or lack thereof does not make God love me (or you) any less, darn it, so why do I let them make ME love me less?!?  BLAH.

The “Psychiatry Times” article had an interesting quote that, “death anxiety may also result in the following positive opportunities and growth-oriented goals:

• Valuing creativity and creative achievement22

• Generativity23

• Meaning making

• Mindfulness and meditation24

• Positive health behavior changes25

• Prioritizing growth-oriented goals and positive standards26″

Likewise, numerous websites have shown this graphic for finding the positives during this time:

coronacalm

I think there’s a fine line between looking at these great ideas, trying to do them or not doing them, and then using those outcomes by which to judge ourselves. I’m guilty of that, as seen above.

I’m also guilty of writing blogs that are way too long, waaaay past my bedtime, so I gotta wrap this up without feeling added guilt at the fact that I’m crap at writing conclusions (I should just end this here with a, “Bye!”). LOL!

I think I’m just going to say that I, and probably you, have to give ourselves some credit. We’re surviving a pandemic…it’s not only a viral pandemic; it’s a pandemic of misinformation, of unrealistic goals, and of misunderstood, confusing presumptions that affect us on every level. It’s a pandemic that has kids caught in the middle, and that’s a hard one to accept and to work with (I still don’t know how to explain all of this to my kiddo or how we’re going to get back into the routine I swore I wouldn’t let us get out of). It’s a giant ball of confusion and chaos in a world that was already a flippin’ disaster, and now we’re in deep. I’m struggling with feeling buried, and I’d wager that you might be, too, if you’re still reading all of this.

Peace is a concept that sounds so refreshing and so restorative…the other night, when I said I was trying to pray and all I could get out was, “Jesus, please?” PEACE was what I needed, what I was seeking. I didn’t have to say it–He knew, and I slept like a baby. Peace is the antithesis to Panic, and it’s not some global, Michael-Jackson-We-Are-The-World Sing-A-Long. Peace is a spiritual state, and I think it’s like a shield around us to protect us from losing our ever-loving minds during life as a rule. Panic tears holes in that shield, so we gotta get in a place of quiet and worship and GET IT BACK. That’s going to be my goal through the rest of the pandemic…sure, I want to bake all of the things but still lose these 15 pounds, and read all of the books and reorganize my household, but what is it without the very Peace of God?

And that’s my new focus…that’s what writing these nearly-3,000 words has led me to: Seeking Peace. Peace in the face of the Pandemic, Peace in the face of unsteady Mental Health, Peace in the face of Homeschooling and Job Insecurity.

Peace from the very Heart of God…for you and me, for our households and for our families.

Peace to you and to your loved ones….peace in the middle of the noise and the guilt, and the standards and the social media mess. Peace, be still.

 

Click the link to be taken to a list of Bible verses focusing on Peace. Shalom, y’all. 

shalom

Rescued…

/ Cassidy S. Cooley / Leave a comment

More than the coronavirus…

More than statistics, or reports, or fear, or uncertainty…

I’ve been in a dark place for the past 2 weeks, and even though I had more than one person tell me to get over myself, or that they knew I was struggling with fear more than reality, I just couldn’t get my chin up and out of the water.

My prayers have been sporadic and ADD. I can’t focus; my eating habits are out of control, and I find myself constantly looking for news, only to be completely unsatisfied and that I just keep wondering, “what’s next?” This sidewalk over raging water is unstable, and the constant tension is wreaking havoc on every cell of my being.

The truth is, a person can only take so much, right? And I’m coming into this with a pitcher that’s half-full and full of holes–I’ve been so tired, for so long, that it gets depressing, which in fact, just makes me more tired.

At the end of February, we were shell-shocked to find out that my thyroid cancer has returned; this means that just as corona-panic was beginning to sweep the nation, I was going back-&-forth to Mercy Hospital every day for about a week for shots and testing. I kept the number of people who knew pretty limited, because I honestly can’t deal with any negativity right now. I know this cancer doesn’t  kill people, but just knowing it’s there is somewhere between annoying-as-hell and frustrating-as-hell. I just got released for 3 years from Barnes hospital in January, and now, less than 2 months later, it’s back?!? Are you frickin’ KIDDING me?!?

And I tried to pretend that I was okay with it–that it didn’t bother me, and that telling my family was just a formality–and that’s complete garbage, because I was gutted. I hated telling my parents, my boss, my sisters….my husband. It’s not fair to them…they’ve had to carry me so many times–it’s just not fair.

So, I left my office on March 18th, thinking that I would take the 19th and the 20th off for Jericho’s spring break, and then I’d work half-days the week of March 23rd…but then came the news that I’d need to telecommute. Okay, sure–I’ll telecommute that week, and I’ll be back in the office as usual on March 30th, right?

Wrong.

I’m working from home, and will be most likely until the end of this month. I’ve always wondered what that would be like; it’s nice to see my kiddo in the morning. He comes into the office every morning and hugs me in his rumpled pajamas and tousled hair, proudly breathing on me because he knows I can’t stand morning breath. He crawls on my lap and rubs his eyes, and I savor the moments. I mean, I DID say that I wished I could be a stay-at-home mom, although this wasn’t quite how I saw it happening.

I miss my usual pace at the office–I do a lot of different things, so it’s been hard for me to adjust to doing one thing at a time, with one monitor at a time. I get really frustrated with technical issues, and my personal computer is not suited for my job, but I’m making it work! I’m learning how to Zoom and how to push through, and just how many webinars I can take and stay sane (Six Sigma!!!  I took a black-belt Six Sigma course, and passed the dang test!!!!).

When I’m not being productive, I tend to make bad decisions (primarily with eating–oooh, those Thursday weigh-ins are NOT GOOD) and I also tend to feel terrible about myself as a human being. I’ve recently taken up embroidery again, which is crazy, because all of  my patterns are from a little Ace Hardware I worked at back in 1999. They’re yellowed, but I can still make out the pattern; I’m remembering how to do the stitches from back when my Grandma taught me at 12 and 13 years of age.

I’m learning how to do my nails like a grown-up (dipping powder is awesome!) and I’ve really gotten into an at-home spa experience. I have a wax melter and every facial thing you can think of; most of the stuff I’ve had stocking up for years, and am just now learning how to use it.

David has been laid off from his position, so he has assumed homeschooling our son. I have to admit, it’s fun to listen to them…until Jericho gets frustrated and has a total meltdown. He has about as much patience as his parents, LOL, so we’re all learning how to take deep breaths and to to find better coping mechanisms. It’s a journey.  I spent my lunch break yesterday giving a Spanish lesson.

I don’t speak Spanish, y’all.

I don’t make enough money for the therapy this kid’s probably gonna need from my pathetic attempts to educate him.

So, all of this is to say that I probably would have been in the “mullygrubs” even without the added medical drama. I had a full-body scan at the end of March; the insurance companies demand that I go through the racket of doing a full-body scan before they’ll approve a PET scan, even though we know the full-body scan will be inconclusive. It was, so now we wait. My tumor markers are low–0.7–and we’re going to wait until I’m at 1.0 until we progress to the PET. It’s the usual hurry-up-and-wait crap that gets in my head and stresses me out (even when I won’t admit it, it shows). Add corona to this, the lack of income, the lack of school and the slow pace of my job, and it created a perfect storm for the Vortex of the Downward Spiral, and I couldn’t shake it.

I’m still not through it…I’m trying to surround myself with worship music and musicals, to remind myself to sing my way through this…Sunny days make it easier (that’s why I’m writing right now–the sun came out, the window is open, and I finally drug myself into a shower) and like I can process things a bit better.

Like everyone else in the world, I’m overwhelmed and I’m struggling to see the beauty in this mess.

But you know what?!?

Someone threw me a lifeline.

One of the young ladies that I work with texted me out of the blue (Emma! I’ve blogged about her before):
“Hey, do you wanna do a Social Distancing Photoshoot?”

Um–a reason to put on real clothes, and go outside, and see actual people?!

YES.

She sent me the pictures today, and I have to tell you, I don’t know why I reacted quite so powerfully to them, but I literally felt myself take a deep breath, and I got overwhelmed by GRATITUDE to God for giving me this amazing family who surrounds me with so many wonderful, hilarious, amazing moments that work together to form a pretty phenomenal life, even when the chips are down.

GOD IS GOOD.

And people are good.

Emma did a great job of catching “those” moments–you know, the genuine laugh, the squish-hug, the toothless grin of a first grader (click the link to see the proofs). She captured the joy of our family, and it was such a beautiful reminder that I am surrounded by the most beautiful of gifts, even when I get overwhelmed and bogged down in the dark places.

You never know when your act of kindness is someone else’s lifeline…when God speaks through you and opens doors to someone’s heart, letting His light shine through.

My dad really likes Lauren Daigle, and when I talked to him a few days ago, he’s like, “Yeah, I really like that ‘Rescue‘ song by that Lauren girl!” I’ve heard it, but I really listened to it today (thanks, Dad!):

“You are not hidden
There’s never been a moment
You were forgotten
You are not hopeless”

How many times do we let words like, “hopeless” rule our lives, even as we say we’re dedicated to the God Who gives the greatest of Hope? I fully understand that anxiety and depression–which go hand-in-hand with chronic fatigue issues and autoimmune issues–are real, chemical problems. They have a spiritual effect, and it gets hard to focus on Who I know Jesus Is when I’m so chemically messed up–it’s so hard. Having the motivation to take care of myself when I’m in these pits seems unreachable. There are a LOT of superlatives when physical syndromes throw up roadblocks every time you turn around, and it takes constant discipline to not get shut down and drowned by it all (click the song lyrics above for a list of Bible verses about being rescued).

Sometimes a simple act of kindness is all that it takes to lift someone up out of all of that.

I’m grateful.

I’m not forgotten.

I’m not hopeless, and He never lets me think that for very long….

He’s my Rescuer.

We’re going to get through this, all of it. We really are, and the world will look different on the other side of it. We take one step, and He takes it right along with us.  We can do this, and we’re going to do it.

Come Follow Me: New Perspective about Peter walking on water ...

The Boy Who Cried Wolf…but didn’t.

/ Cassidy S. Cooley / Leave a comment
Man, I blew off the initial warnings about the coronavirus–I totally didn’t take it seriously, because of “fake news.” I think it’s become a “Boy Who Cried Wolf” scenario–the media has over-hyped SO many things, that now we don’t take anything seriously…and here we are. This thing is spreading quickly, and I think that I, as well as many other people, were under the impression that it’s just a bad flu. It gets real, though, when you realize that YOU (as in, ME), per the letter your doctor wrote to your (my) bosses, are to be considered as “extreme high risk.”
Now, most of you know I’ve faced down some pretty challenging medical hurdles thanks to a heavy dose of grace and a touch of ignorant oblivion. Usually, I only find out that I’ve almost died in discussions with my doctors after the fact. 🙂 This time, though, they’re serious, and I’m realizing that I was an IDIOT when all of this started out. I’m not scared or working in fear or anything…it’s just a reality that I didn’t quite grasp. So, do me a favor–If you’re not taking this seriously at this point, I get it. I understand. But just take a second and realize the implications to your family if all of a sudden, you were out of the picture–either dead (worst case scenario) or stuck in the hospital for an extended (and expensive) period of time. Think about the implications if your parents were gone (and I know some of my friends know that all too well). Consider your life without any of the people in it that you KNOW are “high-risk” and the ones you DON’T KNOW are high-risk (because I don’t really look like I am, but I TOTALLY am).
I like my parents. I like their friends. And I like my family.
I like my life.
I’d like to keep it as long as I can.
So if you aren’t taking this seriously, and you try to get all up in my business, don’t be surprised if I or someone in my family corrects you. And if you see me forgetting what I’m supposed to do (which is easy, because I feel fine), feel free to smack me hard enough to put the proper “social distance” between us. 🙂 I’ll take it as a sign of love. 🙂
Be well, readers–I’ll be over here, trying to figure out how to work from home and home-school and basically not crawl up the walls. Gonna need more than thoughts and prayers to get through the next few weeks, for sure!!!!!!!! Gonna need a miracle and some divine intervention–LAWD, help us! 🙂
Hey, maybe I’ll get my writing caught up…

Fear.

/ Cassidy S. Cooley / Leave a comment
Fear.
Fear is heavy, like a suffocating blanket of pressure that you just can’t shake.
Fear locks you in your own head, making you see everything through its lenses, where everyone is on the attack and even the air you breathe is tainted with its taste…
Fear chains your motivation–
Fear tapes your mouth shut.
Fear stifles your song.
But for God…
God says, “Perfect Love casts out all fear,” and He doesn’t just “say” it…
He IS it.
Jesus breathes LIFE into those burnt out, suffocated places…
Jesus gives freedom, and the suffocating blanket of pressure?
It’s no match for the One Who tore the veil to the holiest of places…
It’s no match for the One Who gives us access to the very throne of God.
Jesus gives us motivation…
Jesus shakes those chains loose,
And He opens up our hearts so that the song He gives has
No
Choice
But to tear free from the places where fear tried to stifle it.
“Perfect Love” doesn’t just cast out fear…it annihilates it.
“Perfect Love” doesn’t make sense to a society that is currently embroiled in a panic, hoarding things like an ogre hoards trinkets, thinking they will save his soul.
“Perfect Love” gives us clear vision.
“Perfect Love” restores our hope…
When we feel overwhelmed…when the choices we have to make seem to choke us to death…when the clouds of fear threaten to block out the Light…
When I struggle with anxiety….
When the decisions are too heavy, & my heart is quaking…
“Perfect Love” is the embrace to my spirit that tells me He is still in control.
So I will rest in Him…
And be at
Peace.

Summer Goals, #PlayGloria, and Kindergarten Graduation

/ Cassidy S. Cooley / Leave a comment

I go through phases where I write constantly, and then it’s “crickets,” and honestly, I don’t really know why. Is it a self-discipline thing? An emotional thing?

Maybe it’s an energy thing, and I haven’t written anything lately because I’m perennially exhausted.

I’m still here, in case you were wondering (in case I’m wondering?).

The schedule’s returned to an unreachable pace, with David not only being back to work, but working a different shift. I’m so grateful that he’s employed, but I’m not going to lie and say it’s easy. We see each other for around 15-20 minutes per day (usually trying to have conversations that are perpetually interrupted by, “MOOOOMMMMM!” and “LOOOK AT MEEEEEEE!”), and then I’m off to bed, and he’s doing the evening entertainment for the offspring (who couldn’t be happier, because Tired Mom is also BORING Mom). Our marriage is breathing on the fumes of weekends, and our house is perpetually messy.

Our lives are full.

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Meanwhile, since my last post, my son has graduated from Kindergarten. In the ceremony, his class recited Scriptures, sang songs, and basically let us know they were going to join together at some point and take over the world. I believe every one of them could do it. Jericho’s classmates are a beautiful mixture of personalities, and I’ve loved getting to watch them interact over the year. My little guy has matured and learned, and is showing more and more of an amazing personality.

We have Summer Goals (and even as I write that sentence, I’m laughing at myself). None of those goals involve housekeeping, but I supposed it must be done. Frankly, our dog is so old (“how old is she?”) that we’re kind of waiting for her to cross that Rainbow Bridge and go to Jesus, because the carpet will need to be replaced throughout the house…and I’m hankering for a change in our color scheme, so the entire house will need to be overhauled and deep-cleaned. It’s times like this where I’m grateful that we’re still in our “starter home,” and it’s tiny.

I’ve started Jericho on a First Grade curriculum from Brain Quest, and every day, he does 2-4 pages in his workbook. My goal is to get him through the book this summer, just to keep him sharp and to work on his handwriting. He still gets “6,” “9,” “d,” “p,” “g,” and “3” backwards. I haven’t gone so far as to discuss it with my office’s peds department yet…I’m not hugely concerned, because he can correct it when I call him out on it. I’m planning on mentioning it in his eye exam next month.

That being said, get your child’s eyes examined every year! It’s a relatively painless examination that can help their future!!!!  PSA—and done.

ANYHOOO, a little thing happened this week that completely de-railed any attempts that I’ve made to finish this blog in a timely manner. THE SAINT LOUIS BLUES WON THE FREAKING STANLEY CUP, and I’ve cared about little-to-nothing else this week. Image may contain: 1 person, stripes

Since I’m given to panic attacks at the mere THOUGHT of ginormous crowds of people, I’m going to be watching the parade from my app. It’s going to be amazing, and I’m so proud of the team. I’m not a big sports person—I always mention that I don’t like baseball, but I consider myself a Cardinals fan, simply because I love what the camaraderie brings to the city. I do, however, like hockey, and even though I never watch the games (my family is not a “sports” family, but we’ll scream like maniacs at a cooking show), I think hockey requires the most skill and tenacity of any sport. I admire hockey players—anyone that sacrifices their teeth for anything, gets mad respect from me. Also, my youth pastor’s dad was the trainer for the San Jose Sharks back in the 90’s, so my love and appreciation for the game runs deep (I’m SO glad we beat them for the Nationals!).

Sports talk aside, things are moving along at a frantic pace…it’s hard to find time to slow down and EXPERIENCE things, as opposed to just getting through them. I’m usually doing the latter, and by the time a week’s gone by, I’m wondering where it went? Too many hours spent on the couch and not in the sunshine.  Being in a somewhat-constant state of fatigue makes me feel like I’m missing out on so much…oh, and the MOM GUILT!!!  I can’t.

I keep telling myself that I won’t be like this, forever…Jericho asked me the other day, “Mommy, were you ever not tired?” Ouch—that hurt. I basically told him I’ve been tired for the last 7 years. J I’ve been without my Dear Thyroid for 4 years this month, and all of my Facebook Memories that come up threaten to drag me into the Abyss of What-If, so I’m trying to ignore them.

I deal with a lot of “Mom Guilt,” partially because of my personality, and partially because there’s so much to work with.  I’m a working mom who had to use formula, so start there, and work your way up, mom-shamers.  My son is starting to get Six-Year-Old Sassy, and he’s watching too many episodes of “Teen Titans,” (hey, I didn’t start him on it…but they’re hilarious, so now I’m mom-guilting over a moral failure) and eating too many tortilla chips. Overall, though, he’s getting lots of playtime during the day in his summer program, so during the week I’m not feeling tooooooooo horrible about coming home and being chill.

I know this sounds mushy and all, but every day I look at that kid and I swear, I love him more. Even with his sass, he’s still funny and sweet, & he’s creative. His imagination is limitless, and he reminds me of my favorite parts of my own childhood. I need to get back into the routine of reading him a bedtime story; he’s been staying up later than I do, so I’m missing out!!

This summer, we have Six Flags passes, and are planning on going if the sun comes out any time soon on a weekend.  We’ve had so much rain! I love watching Jericho start to tentatively embrace roller coasters. He’s working on riding his new bike; he got a bit scared of it, so we have to ease him back into it. I don’t think I coddle him (David does), but I know so well what it’s like to be afraid of everything, and to feel like less of a person because of it. I don’t want that, for him. When he’s afraid of something, I tell him that it’s okay to be scared. We take it slow, until we’re ready. If he isn’t ready, I think that’s okay—he will be. I’m surprised at my own patience in those cases, but I think that’s what it takes. I want him to enjoy roller coasters and bike rides, and roller skates and bowling, and everything fun (we’re back to bowling again, BTW—I LOVE it!!!). If it’s fearful, it’s not fun, and I know that too well. We have nothing but time, to make those leaps—even if that’s not true, we can live like it is, at 6 years old.

bowlMy goals for this summer are to take it in…to enjoy parenting, and to not enjoy too much TV…to take my time doing life in general, and to spend less time embracing the things that bring me down. I love that song by Lauren Daigle, called “Look Up, Child.” Rico-Bean sings it a lot, and I think it’s major goals, for me. That’s my goal—to Look Up, and to keep from letting myself be weighed down by fatigue, or stress, or whatever albatross has decided to land on my neck. It’s summer—it’s time to get free, to live free, and to stay looking up.

And maybe, to spend some time blasting “Gloria!!!!!” on repeat while my son yells at me because he’s sick of the song….He’ll get over it, and we’ll have these memories to last us a lifetime. I’m so proud of our team. #LETSGOBLUES!!!!!!!!

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The Inconvenience of Healthcare AKA, Making a Big Deal out of Nothing At All

/ Cassidy S. Cooley / Leave a comment
*Never doubt my love of Air Supply.
**Back Story: If you’re new to the blog, I was diagnosed with metastatic thyroid cancer in 2015. I had a tumor that wrapped around my throat and went into my mediastinum; the cancer broke through the capsule of the tumor and went into my lymph nodes. I had a total thyroidectomy (TT) in 2015, and have been on thyroid replacement hormones (TRH) since then (Armour Thyroid). After firing my first set of doctors (oncology, ENT, and endocrinologist–the oncologist didn’t want to see me back for any follow-up care for a year, which my PCP didn’t appreciate; the surgeon became out of my insurance network; the endocrinologist miscommunicated a medication dosage to her staff, and almost killed me), I wound up switching all of my cancer-related care to Barnes Jewish Hospital’s Siteman Cancer Center, where I’ve remained since 2016.
Surgeon: “You need to visit the oncologist for updated testing; it’s been 2 years, so you’re due.”
Oncology Nurse: “Please come in for a consultation!”
Me: Has a day off, arranges schedule accordingly (I work 40 hours a week, and have a 45-minute commute each way. I stay busy. For this appointment, I was going to have my son with me, but whatever–we’d make it work).
Oncology Nurse (2 days before the scheduled consultation): “Oh, no, we don’t want to see you for a consultation until you get all of these tests, which will take an entire week to accomplish. Let’s get this scheduled.” This testing involves 2 days of injections, plus one day of radiation (tracer dose), plus 1 day off (because I can’t be around pregnant people), and then a day of labs and a full-body scan….which didn’t work on me, the last time I did it, and I wound up having to have a very expensive PET scan….so I was trepidatious, to say the least.
Me: Arranges appropriate time off of work; arranges childcare. Gets everything scheduled and gets everything approved through office (which couldn’t come at a worse time, given my current workload). Gets emotionally prepared to be a pincushion for a week. Informs family of process to come, and struggles with ensuing anxiety.
Oncology Nurse: “Oh, no, wait, we don’t want to do any of this testing until we have a consultation scheduled.”
Me: “ARE YOU KIDDING ME?!?!?!?!?!?!?” LOSES MY TEMPER on highly-degreed individuals who have obviously forgotten that I AM A HUMAN, and I am more than the stupid disease that has been hanging over my head for 3 years!!!!! “Could you NOT have decided to do the consultation first, like we ORIGINALLY SCHEDULED, before putting me through all of the hassle to put a very busy life on hold for a week? Could you maybe have REVIEWED A CHART and a medical history, and REMEMBERED a few key details?!?!?! Who decided this?!?  Who decided to do one thing, then another, and then the first thing, after I already rearranged my life?!?!?! The Nurse Practitioner? Can I speak to her?!?!?!” She takes a message, and says the NP will call me back.
Me (super-mad): Calls surgeon who sent me back to oncology in the first place; gets favorite nurse on the phone. “Lisa? Can you help me? Can you talk to them and figure out the why in what the heck they’re doing, since your MD sent me back to that office in the first place?!?!?” She agrees to call them; she was out of the office when I was told to make the oncology appointment, and she’s aggravated that the MD forgot to explain everything to her. She’s been amazing. She can’t help what happens next.
Oncology Nurse Practitioner (now I’ve moved up the chain of command; my phone was IN MY HAND and went to voicemail, and this is what I got): “Mrs. Cooley, the insurance company won’t cover any of the testing until you’ve had a consultation.”
THEN WHY DID THEY CANCEL THE ONE I HAD SCHEDULED IN THE FIRST PLACE!!!!!!!!!!!
I am so sick and tired of the medical BS that doctors put people through, because somehow, in all of this, they forget that we are individuals who put our actual lives on hold to deal with these things that come from out of nowhere to sideline us and our families!!!!! It’s been 12 hours since my conversation with oncology, and I’m STILL mad. It’s an endless cycle of bad communication, and it’s a small wonder that insurance companies are now basically practicing medicine without licenses in order to dictate the course of care/medical authorizations. IF THE DOCTORS THAT ARE RESPONSIBLE FOR THE CARE THAT AFFECTS THE QUALITY OF OUR LIFE CANNOT EFFECTIVELY COMMUNICATE WITH EITHER THEMSELVES OR WITH THEIR PATIENTS, what hope do we have for our medical well-being?!?!
CRO_Health_CROH_May_Doctor_Office_Confusion_03-15
I don’t think it’s too much to ask, for a doctor to review at the very least, a list of the patient’s diagnoses before they walk into a room for a consultation or order a test…but guess what? They’re so over-scheduled that they don’t have time. BUT, they’re so over-scheduled, because the insurance contracts reduce their allowed amounts to the point that in spite of popular opinion, doctors and hospitals generally make just enough money to make a profit, or even to barely meet costs. My orthopedic surgeon–you know, the woman who was responsible for cutting my feet open and rearranging the tendons so that I could relearn how to walk properly–was allowed maybe 10 minutes for each visit (actually, I think it was 4 minutes) by her overseeing medical group. 4-10 minutes, to make sure that surgery is necessary, that 4″ of incisions are healing properly (mine didn’t), to decide what steps need to be taken–she has 4-10 minutes to make decisions that will affect me for the rest of my life. Me, and the 50-90 other patients that she’ll see in a day.  Fortunately for me, my ortho was AMAZING, and her staff was phenomenal….not every MD is as dedicated, and not every MD can handle the workload they’re assigned (patients, documentation, insurance reviews–it’s more than the average patient understands).
ARE THEY KIDDING US?!?!?!? Are they kidding the doctors? They didn’t sign up for this; they signed up to help people, not to treat them like a cattle call.
But there they are, making decisions, saving lives, and leaving a trail of confusion and frustration in their wake…
At this point, I’m not sure what’s more frustrating—the doctors, the insurance companies, or the diseases that exist in the first place.
I was whining on the phone to my mother last night (God love her, for listening to me), and she pointed out (very gently) that since my thyroid was ripped out, my ability to process my emotions has been greatly affected. I detest admitting that she is correct, but it’s true. I struggle with being angrier when I’m mad, with being deeply depressed when I’m sad. There’s no happy medium with my emotions, and it makes things much more difficult. There are times when I’ve wondered if I’m straight-up bipolar, or on the spectrum, or if I’m just permanently screwed up from all of this. Maybe it’s PTSD on steroids, or maybe I’m just a terrible person. I don’t think it’s normal for people to stew on things like I do, or to have the internal (and sometimes external) monologues that I have to sort things out. I don’t want to admit that I’ve changed, but it’s true: I’m different.
I don’t know if I’m more honest, or if I’m just, frankly, more of a bitch. I don’t know if I’m more unfiltered (because I don’t have the patience to wrap things in snowflakes for the general public), or if the more choleric side to my personality has somehow mutated, but what I do know is that I am sick and tired of the hamster-wheel that a chronic illness put me on.
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I like people less. I have less patience for people. I like the fact that I sit in an office by myself, because I don’t think I can deal with the anxiety and stress that dealing with the public puts me through. I don’t like getting out of my familiar, and I don’t want to do it. When doctors lay out a course of treatment or protocol, I will latch onto that, and Type-A get it scheduled, and God-help-you if you get in the way of MY PLAN.
On the plus side, since my whole cancer debacle, at least you know when you ask me a question, you will get the whole truth, and nothing but the truth, once I’ve warmed up to you and feel like I can trust you with the unfiltered version of me. That takes a while–I’m not as easy of a person to get to know as one would think at first.
I think the thing I’m the angriest about is that I have an incredible amount of anxiety any time I have to deal with the oncology department. I can’t explain it or make it go away; just knowing I have to go back there seems to undo me, and I had just gotten it into my brain that this was actually happening again. Surely I am not the only person in the world who deals with this?!?!?  I had just made peace with it all, and had made my plans accordingly; as aforementioned, I do NOT like it when my PLAN gets messed up or taken out of order, LOL. That’s not doing me any favors in motherhood, let me tell ya’. Am I crazy for being this aggravated about this one instance of medical miscommunication?!? Or should we all get this mad, and maybe make something happen from it?
I know the “right” things to say, here: “God has a plan.” “This will all get worked out.” “Trust Him with your anger.” “Be angry, but don’t sin (stop swearing!).” “Stop ranting (that’s part of my monologue-ing)”. “It’s still the good kind of cancer, right? Be grateful!” Blahbaty-blah-blah. And yes, I’m praying about it..sort of. It’s one of those throw-up-your-hands-and-yell/pray kind of prayers. 🙂 I do that a lot lately.
Healthcare in this country has got to get figured out. I consider myself to be a pretty informed patient after almost 20 years of working in this industry, and if this kind of confusion in healthcare is “normal,” WHAT IN THE WORLD is going on? What have we come to?!? And what are we paying for?!?!?!?!?

Limbo…

/ Cassidy S. Cooley / Leave a comment

Two years ago, I posted a status update that I was basically cancer-free.

cancerfree
Before you read any further, please note that I’m not saying that I’m not cancer-free. THIS IS NOT A POST TO SAY THAT MY CANCER HAS RETURNED, so please don’t worry. 🙂
It’s actually a post to say that now they’re telling me it may have never really gone away.
Nobody seems to know the real answer to that question.
I’m posting this not as a means of being dramatic or whiny, but because it’s indicative of how confusing the medical industry can be…I’ve been working in healthcare for 18 years, and have had a complicated medical history, yet with all of that, the terminologies and explanations that healthcare providers give can be very misleading…
At this appointment, I was made to believe that I was done with this whole cancer thing…I even looked at my doctor and asked, “So, does this mean I’m done here?” He said, “Yes, but we’ll still need to see you every 6 months for ultrasounds. Cancer-wise, though, you’re in the clear.” I knew at that time that thyroid cancer, particularly when it’s as complicated as mine was, has a high chance of a recurrence, and that stays in the back of one’s mind.
So, here we are, 3 years after my initial diagnosis, and I’ve been a good girl; I’ve taken my meds, gone to Barnes every 6 months, and had my ultrasounds. I’ve dutifully supplied my blood tests on time, and I religiously maintain a spreadsheet of my results. My lymph nodes in my neck have finally started to shrink, and that’s a positive change since my biopsy in January of this year (when they actually suspected that I might have lymphoma, which was terrifying; turns out that I was still dealing with the after-effects of having mono the summer before). However, I continue to have something called, “residual activity” that shows up on my ultrasounds. It showed up on my PET scan in 2016, and it’s never actually resolved. So, how can I be told that I’m “cancer free,” when in fact. that’s not necessarily accurate? There should be NOTHING in my thyroid bed, yet there’s that stupid thing, boppin’ around on my ultrasound. I don’t have cancer, according to my labs…BUT my labs never said I had cancer in the first place–that’s the anomaly of my particular case of thyroid cancer. I never registered as having cancer, via labwork or biopsy, even though the cancer cells broke through the capsule and went into my lymph nodes. We didn’t know I actually had cancer until I was in the process of having my thyroid removed, when the surgeon biopsied me on the table. Now, however, according to my surgeon and the ultrasound (AKA, “anatomical scan”), I’m not totally clear, and I’ll need to see my oncologist again for follow-up scans (functionality scans, AKA, another PET scan).
I know everything is fine, but you mention the word, “oncologist” to me, and my anxiety skyrockets. I’m not sure why it freaks me out so much; I’d rather never see an oncologist again. Thyroid cancer is a SUPER-slow growing cancer, so even if my tests are positive or questionable, I really have nothing to worry about. It’s just a stupid mind-game, and I hate how it affects me (and everyone I care about).
When we lived in Kentucky, I had an accident with Holly, and wound up tearing a tendon in my wrist. I didn’t COMPLETELY tear the tendon, and as a result, instead of a simple surgery to repair the damage, I had 6 weeks in a cast, 6 weeks in a brace, and 12 weeks of physical therapy. Something relatively simple became extremely complicated; what sounds like the better version of the injury was actually worse than the reality (Partial tear vs. Complete tear). I feel like thyroid cancer is like that. It’s the “good” kind of cancer–it’s “easily” treated. You remove the thyroid, and we’re good, right? Not really…My dad had a kind of cancer where they removed it all with surgery, and everything was fine–no meds, no radiation, and no chemo. You’d think that thyroid cancer was like that, based on the whole, “just remove the mass and the thyroid” thing. No one talks about the chances of recurrence, the residual activity, and the extreme difficulty in balancing the medication that replaces your thyroid. No one tells you about all of things that are affected by your thyroid–the energy levels, the hormones, the immune system (in my case, because of lymphatic involvement). They don’t tell you that when you catch a basic cold, you’d better call your doctor, because it’s gonna mutate and turn into bronchitis or pneumonia or whatever, because your immune system’s compromised. I just started my 3rd or 4th round of antibiotics this year, and my 2nd round of steroids…over a dang COLD.
My nervousness/drama over the thought of additional testing/seeing the oncologist is admittedly stupid. I’m being WAY overly dramatic, especially when I think about all of the people I know who have dealt with “real” cancers…the ones that require multiple rounds of chemo and radiation, the ones that incapacitate people and take lives…Thyroid cancer is often treated by the medical community as the “good” kind of cancer, so the issues that we deal with are not treated with the seriousness or compassion that I believe they should entail.  Thyroid cancer is, by definition, “easy” to treat in comparison to every other kind of cancer, based on the previously stated premise that you just remove the organ, give the patient a replacement med, and send them on their merry way. It’s not like I’ve had a breast removed or lost a kidney…I’m not visibly scarred (unless you know where to look).  I didn’t lose my hair (well, I did, but no one really noticed, and it’s all grown back). My issues have all had to do with regulating the thyroid replacement medication, and that’s a process that will go on for the rest of my life. If I gain weight (huge struggle) or if I lose weight (ha!), the dosages have to be recalibrated. Right now, I’m actually medically slightly hyperthyroid, but the consequences of re-calibrating the medication are worse than dealing with the effects of being hyperthyroid (sleeplessness/heat intolerance/anxiety) so we leave it as is for now.
Ask anyone in my family, and they will tell you that my life after having the “good” kind of cancer is very different from my life before.
My son will never know the Mommy that existed prior to 2015, when I had issues, but I also had energy, and I could go outside in the summer and not feel like I was going to pass out (I thought I was heat-intolerant before this, because of my heart. This is another level). He tells my husband that he wants to “take Mommy home, so we can go to the park.” That hurts, I’m not going to lie.
But I’m being stupid. Aren’t just supposed to shut up and be grateful that I got the “good” kind of cancer?
REALLY?
I very rarely let my brain go down the rabbit hole of “why is this happening to me?” I’ve found that’s a very dangerous place to go, and I’ve learned to stifle that fire with a blanket of blind faith and self-control, per the whole, “blessed are they that have not seen, but have believed” verse in John 20:29. I could list the things David & I have been through that I just don’t get, but what point would it prove? We’ve been through hell? Yeah, but so has everyone to some extent. Everyone has their own definition of the worst thing they’ve been through, and my worst isn’t your worst, but that doesn’t mean one is worse than the other–who makes that judgement call? Life isn’t about comparing my life to yours, or your life to Kim Kardashian’s. Life is about doing all that we can to give glory to God in every situation. If the Apostle Paul can do it, so can we.
So, I try to avoid the “why, God, why?!?” Nancy Kerrigan-isms of my life. My life is GOOD!!!!  I love my life! And I’m not defined by this stupid cancer thing, but it does take up an inordinate amount of space in my psyche, particularly when I’m told that I have to go back to oncology and have additional scans in the next 6 months (they’re not in a hurry. That’s the perks of having the “good” kind of cancer. Nothing has to be rushed, which is cool, even though my brain says, “DO IT NOWWWW!!!!” I can wait until my FSA has renewed, LOL). I’ve been pretty whiny with God all week (when I’ve even spoken with Him–I’ve been so dang sick that I’ve barely prayed, which is embarrassing to admit). I did actually say to Him on Wednesday that “I just don’t understand why I get hit will all of this $hit (I’m not gonna fake Him out with some kind of churchy-fake lingo)!!!” And as soon as I said it, I’m like, “Eh, never mind.” I don’t really need to know the definition. Grace tells me it’s not a punishment. Grace tells me that we live in a fallen world full of crappy chemicals and emissions, of hormone-affecting toxins and atmospheric garbage that affects all of us in different ways.
Grace also tells me that regardless of the confusing definitions and my internal/external comparisons, that the bottom line is that it will all be okay. Grace tells me to stop being afraid of words like, “oncology,” and to start saying things like, “stop being a stupid worry-wart, and chill the heck out.” 🙂 (Okay, Grace doesn’t say that. Mom says that, LOL. I love her. Everyone needs someone in their life to cut through their crap, and that’s my mom. She’s like a younger Judge Judy with a penchant for wedding-based reality TV). Seriously, though, Grace says that this is one more bump/hill/mountain in the road, and regardless of what happens, I’ll get through the other side of it. It really, truly is not serious, and it’s only because of the “C” word that it seems so scary. My surgeon actually once said that thyroid cancer shouldn’t even really be termed as a cancer, because it’s such a slow-growing, minor thing to deal with, and that word is so complicated and fearful. I tend to agree with him, even though I know that trivializes something with major consequences.
Seeing an oncologist is actually just part of regular follow-up care for any kind of cancer. I probably should have seen her a year ago, but because things were so well-maintained at my visits with my surgeon and my endocrinologist, it wasn’t brought up. In fact, my endocrinologist isn’t particularly concerned at this point, and I don’t have to see him for a year (yay!). Oncology is routine, even though in MY brain, seeing an oncologist isn’t routine for ANYONE.
Like I said a few (okay, a LOT of) paragraphs earlier, this post is not to say that my cancer has returned…or that it ever reallllly went away. It’s just showing how confusing the medical industry can be (“you’re cancer-free! Oh, wait, you have activity—oh, wait, it’s not enough to worry about—oh, wait, go see the oncologist–but you’re fine!”), and the emotional roller-coaster that goes along with it. I am fine–believe me, I’m as fine as I get. My levels are well-maintained, and if you don’t count the bronchitis/respiratory garbage I keep getting every few months, my energy levels are good. I’m doing a heck of a lot better than a lot of people I read about on my “Life After Thyroidectomy” forum on Facebook!  Hoooo, those Facebook Groups!!!! “I stubbed my toe! It’s because I had a thyroidectomy!!!!! I hate my doctor!!!!” It gets DRAMATIC…and I’m not going to lie, it’s kind of entertaining. It helps me find out what I really need to be concerned about, and clears up a LOT of myths, particularly when I review some of the stuff with my endocrinologist.
Whether I do or don’t have a recurrence of this garbage, everything is fine, and it’s all going to be okay. Even though the thought of something as routine as a follow-up visit with an oncologist is scary to me, I know it’s a good thing to do. Ultrasounds can only tell doctors so much, and additional testing is a good thing. I just have to get over myself and the mental hang-up I have with that word. I don’t see myself as a “cancer survivor,” because of the type of cancer I have; however, I believe we probably all share a similar fear/anxiety of having to see an oncologist, and of the ensuing tests. It is part of the process we all deal with, regardless of the type of cancer. The mental aspects of the terminology are just as emotionally difficult as the physical processes, which is something I think healthcare would do well to address.
Any additional testing I have done will most likely not happen until next year (the perks of “non”-cancer cancers), so I’m probably not going to post anything else regarding my status until then. For me, just writing all of this out has been helpful; only so much can be said in phone calls and 10-minute conversations with spouses. Blogging is my way of having uninterrupted communication, so it’s completely selfish, and I’m not sorry. 🙂 If you’ve stuck with me this far, well, good on ya’, mate! 🙂
This is all just part of the process. And it’s okay. I’ve never been good at any kind of waiting, and I’ve wanted everything to be over and done with for the last 3 years. I’m not really getting that, and I’m not good at not getting what I want. I want closure. It’s not happening. It’s a bizarre kind of limbo.
I’ve never been particularly good at that game. 🙂