thyroidectomy

“Where’d You Go?!” AKA, “The Case of the Missing Body”

/ Cassidy S. Cooley / Leave a comment

I’m going to start this blog out by making a statement I never thought I’d make & am terrified to state publicly: I have lost over 100 pounds.

“Where’d you GO?!?” is the question I am most commonly asked, and I generally respond, “I’m right here.” I’m still me. I’m still a giant jerk…still a giant nerd…still a flawed bonehead that loves Jesus & fails every day. I’m just….lighter.

I’m still a “big girl,” & I’m cool with that (even though I look like Shrek in family photos–why is everyone so SHORT?!?). I’ll never be petite–I’ve got hips that could birth a Hereford–& I’m 5’7.” I have feet like Sasquatch (my sister calls me “Casquatch” & I embrace it), so don’t get it twisted–I’m solidly built. I’m as my college “friend” called me, “healthy.”

Body confidence has NEVER been my forte. I dealt with so much body shaming growing up; when you grow up in the Church & you develop early, you’re punished for it. It’s crap. I was 14 and a DD, & my tiny, little Christian school couldn’t handle it. I got dress coded on a regular basis (like I asked for it?!?); my mom always reminded me to “suck it in,” as I had a belly even before I had my babies. I look back at pictures of myself, & I looked AMAZING at 17, but felt like a total freak show. I was taller, curvier, & louder than everyone I knew, and none of those things fit in well with a culture that wants you to be “meek.”

I felt hideous. I was “too much” for society, for church, & even for my family. I was different–I acted differently, and “different” was “bad,” so I tried to be what people wanted. I tried to dress in a way that covered everything up, but that’s hard to do when you’re top-heavy (& I only got more top-heavy as I went through college, leading to some horrific nicknames that I am still embarrassed by). If I could have taken a knife and cut off various parts of my body to relieve how ugly I felt, I would have. Every family picture showed how I didn’t fit in (several of those pictures are still on the walls in my parents’ house). Every group picture in the church youth group with the tiny, petite blue-eyed girls with straight hair, every picture of my vocal group in college where I’m trying to hide beneath suit jackets & scarves, every picture of me from my wedding where there’s industrial-strength tailoring holding me into my dress–every picture has a flaw I can’t help but to see.

These flaws are compounded by Rejection Sensitive Dysphoria, which is a common thing for people with ADHD to struggle with.

I didn’t know I had ADHD until a few years ago. I just thought I was a weirdo, an outcast, the one “odd” personality type in a family that all tested one way while I tested another (side note: Personality tests were not designed for the neurodivergent. Throw them in the trash). I don’t fit in now, and I didn’t fit in then. Being told I was “different” added to the RSD. I looked different. I acted different. I was Built Different.

And therefore, I was BAD.

This voice that tells me I’m a “terrible, awful, horrible, wacky weirdo” has whispered in my ear for decades. It’s robbed me of being at peace with this “strange” mind, this “odd” body…it’s taken away the joy of being “fearfully and wonderfully made” that I should have celebrated, that I should BE celebrating. It’s sent me through cycles of self-harm & suicidal ideations that even though I recognize, I still encounter (sometimes through reasons I can’t control, i.e., medication changes–thank you, family & friends, for loving me through these processes!!!!!). Being weird or different, regardless of the fact that society is trying to preach inclusivity, isn’t welcomed, so I should just check out, right?

WRONG.

We just don’t realize how body image issues carry over into mental health…how it’s a spiritual issue that’s complicated by neurological and hormonal issues. Weight is NEVER the true problem. It’s ALWAYS a symptom, yet our healthcare system is only just starting to realize how true that is. Ask a fat person–we’ll tell you….but because we’re fat, we’re intrinsically stupid, right, doctors? And therefore, our opinion is void….and we pile on the mental health issues.

I’m 47 years old. It wasn’t until my ADHD was diagnosed and properly treated that I started looking over life experiences with a fresh filter & learned just how toxic and damaging my body image issues were. Losing weight has further complicated this retrospect, as I can see how many times health care providers dismissed major problems in the light of my weight. I have carried decades of guilt over my weight, like it defined my worth as a Child of God. I have gaslit myself & ignored root issues that played out in binge-eating & self-harm. I have looked at family pictures and privately sobbed (sometimes not privately) at how disgusting I looked & how I brought shame on our family with my size. I have shed oceans of tears over the combined issues that I now know were rooted in anxiety, depression, neurodiversity, rejection sensitive dysphoria, PTSD, and abandonment issues.

Shame is a heavy, heavy burden to carry. When it’s combined with RSD, it’s soul-crushing. When the burden of untreated ADHD finally began to be lifted, the lies of RSD began to untangle, & I began to get clarity on this skin that I am in, on this body (amongst other things). The ability to focus allowed me to silence the inner static that had me snacking constantly. Getting my ADHD treated led to a healthcare provider that got my diabetes under control through a semiglutide (which is also something I never thought I’d say publicly, but whatever, we’re all friends). I overhauled my healthcare team in 2021 & began the process of what would ultimately lead to losing 110 pounds.

But now what happens? I get shamed for using a semiglutide? That’s the only part of the journey people focus on?!?!? The shot gets all of the credit?!?!?!?!? Um, no–you can shove that. Today, I am refusing to take shame or blame for using an injection to first-&-foremost, get my T2D under control. Did it help me lose weight? Absolutely. Was it the only thing? NO. It’s taken multiple medication changes, getting my ADHD treated, therapy, better food choices, family support, and most importantly, remaining focused on listening to the Holy Spirit to carry the shame & to help me identify triggers. When you brain starts to work properly–when the synapses fire & connect– you can hear the truth of God so much more clearly. My ADHD meds have turned down the static in my brain, & have turned up how I tune in to Him!

There’s more of me to give, even as there’s technically less of me. Life is more….LIFE. That’s not saying things are easy; in fact, if you check my last blog, you’ll find our life has become intensely complicated in the last few months, & it’s been ROUGH. I see God working even in the storms…He is still in control.

And by His grace, so am I, at least, when it comes to my mental health support and my weight loss journey.

Physically, “don’t you feel better since you’ve lost the weight?!” is a misnomer. Losing weight can sometimes a.) Remove being fat as the cause of the problem and b.) Exacerbate the problem. As we speak, I’m in the process of ruling out yet-more autoimmune issues related to my legs & feet (did you know there’s a medical level above a neurologist?? Yep–I now see a “neuroscientist,” & it’s a trip). Testing for another issue means I’m off of my primary ADHD medicine for a couple of weeks, & IT’S NOT FUN. I’ve had a frightening decline in my energy levels (aren’t those supposed to be BETTER once you’ve lost weight?!?) that specialists are trying to identify, but that fatigue has been a cyclical issue that’s followed me for a decade. Now we at least know I’m exhausted not because I’m fat, but because I’m…me. That’s fun.

I’d like to throw up a face-palm for every doctor that missed signs of major issues because I was heavier. YOU. ARE. JERKS. 🙂 Jesus still loves you; I think you can go climb a cactus, for real.

Weight loss is hard, even in the face of perceived successes. I have anxiety every single time I clean out my closet (so bad!!!!!) or go into a store. I STRUGGLE with body image issues. The picture I’m posting below is what set off this blog post…I feel like I should LIKE this picture. I’m like, genuinely laughing in this picture, yet all I can see is the fact that because it was taken by someone who is shorter than I am, my neck looks fat. And fat, in my crazy-wired brain, is BAD. Therefore, even though I’ve lost weight, I’m still fat and ugly and this picture is terrible, right?

I sent this picture to someone who has been on a similar weight-loss journey & said, “I want to like this picture but I don’t.” She told me it was gorgeous (and considering she’s stone-cold STUNNING, I should take her word for it, but I don’t). She understands how I still feel like a heifer even after losing the weight; she struggles with the body image issues as well, even though she’s always had the figure I wish I had. The conversations I’ve had with her on our body image issues validates how I’m feeling, and how I know it’s messed up but can’t fix it.

I have to forcefully remind myself that losing weight does not define me. I’m terrified to gain it back, but if I do, gaining weight does not define me. This body is the shell for Who I Am, and although Who I Am is a definite weirdo, Jesus says I’m frickin’ SPECTACULAR. Whatever it takes for me to embrace that I am Who He Says I Am, that’s the journey I am committing to take, here on out.

My son is inspiring me to make this commitment. He’s on the shorter side of the kids in his class, & was recently tapped to play Napoleon in the school play (he didn’t really want a speaking role; he says that’s why he was cast in the role & I’m taking his word for it, even though a lil’ heathen said it was because he was short. I see her…duly noted, child, with a healthy dose of parental side-eye.)

My son’s body image issues started in the first-or-second grade, when the more athletic boys in the class were comparing muscles. What first grader has defined muscles?!?! Um, not mine–sorry, child, it’s not in the genetic cards. Since then, I try to stay aware of realistic comments like, “yeah, Mom, basketball’s not really my thing, hello?!?” verses shaming comments like, “I’m just fat, Mom.”

No, son, you’re not fat. I hate that you know that word and I hate that I’m the reason why. I’m sorry that your genetics predispose you to being on the thicker side but I also know that you’re on the cusp of a growth spurt & that you’ll lean out. I’m sorrier that he’s picked up on my own issues & struggles, and that being ADHD himself, he has some of the same eating habits that I developed to try & quiet my brain. “Bored eating” is a thing, & all of us fight it. I don’t know that the body image issues will resonate as deeply with him as it did with me at that age…but I also don’t think that body image issues are relegated to gender. Body dysmorphia is more impactful amongst the neurodivergent, so I suspect my son & I will be having this conversation a few times in the coming years. I am praying that he will come to me with these discussions to avoid the decades of pain this has caused me…

It’s very, very strange to see someone I haven’t seen in a long time & have them comment on my weight first-thing. Frankly, it’s rude–don’t do that. Don’t ask the people close to me how I’ve lost weight either–I’m an open book & if you were my friend, you’d know to ask me directly. If you don’t know, we’re not friends. We’re social media acquaintances in good standing. I don’t really want to discuss my weight, and part of the reason for this blog post is to hopefully put an end to the questions. I don’t like talking about weight–what woman does?!?–and if you like to talk about weight, good for you. Do it with someone else. It’s not a topic worth discussing.

Now, if you want to talk about Type 2 Diabetes, ADHD, RSD, or about how Jesus has changed my life, I will have these discussions All. Day. Long. The numbers on the scale, though? NO.

I am still the same person I was at +250 pounds. I am not, however, the same person I was 4 years ago…I look back at that person & I see a wholllllle lot of hurt that’s in the process of being identified and healed by a God Who has NEVER looked at me like anything but a beloved child.

I am listening to Him point out the pain in His gentle way, & love me to His wholeness.

This body will die some day. It will be fertilizer in the ground, or ash, or whatever…it isn’t eternal, so why have I put so much worth into to what people think of it? Why have I allowed it to have so much power over me when I look at it in the mirror? I can dress it up, slim it down, work it out–I can do everything within my power to build a body that doesn’t scream, “YUCK” when I look at it, but none of that will ever do anything more than build a shell for a divine creation of the Most High.

I’m worth dying for–He said so, & He lived-&-died for me. He rose again, & He is still working miracles through people today. All of our pain–all of my pain–& all of our struggles are things He is longing to hold in His hands, not to wipe away, but to walk us through. Weight loss is often seen by the world as a kind of salvation; I can tell you first-hand it is NOT. It’s a tool, however, & it can be used to harm or to help. I’m choosing to use it as a tool to point out what areas are still raw & that need to be given over to Jesus…where my insecurities show that I can further lay things down for Him, & where I realize the idols I’ve put in front of Him…I’m choosing to lose the weight but gain dependence on Jesus to a greater extent, to gain transparency with Him & to stop masking to such a degree that I convince myself that I’m fine. I’m not. I need Him, & I need His work in my mind, body, and soul.
He’s doing new things, and for that, more than anything–ADHD treatment, weight loss, etc.–I am so thankful.

Now you know. Let’s put this topic to bed, ‘k? 🙂 Unless you want me to flip it into a full sermon, because…I will. 🙂

“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

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?!?!
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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.

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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. 🙂