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

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

Fear.

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.

Limbo…

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. 🙂