“Nothing Breaks Like A Heart…AKA, “[Don’t] Take Another Little Piece of My Heart Now Baby”

Waaaaaay back when I was born, my mother was told that I had a slight heart murmur that I would most likely grow out of. I did.

In college, too much stress + bad food choices + lack of sleep + tooooooo much caffeine = Cardiac Arrhythmia, which eventually resolved. Everything was juuuuuust fine….

Until it wasn’t.

In 2006, I became pregnant with my first child. As a first-time mom, my complaints of, “Hey, I really can’t breathe too well,” and “Um, Doc? I can’t get enough breath support to sing,” were written off as new-mom, “well, what do you expect? You have a human pressing on your diaphragm,” rhetoric and explained away (I’m just a woman, Mr. Doctor. What do I know?).

2 months before I was due, I started seeing double, having migraines, and throwing up. Basic science diagnosed me with severe preeclampsia, and do you know what the “cure” for preeclampsia is? Delivery. So, my daughter was delivered 6 weeks early, and I was “gonna be just fine, ma’am,” said Mr. Third-Generation-I-Know-Everything OB-GYN….

Until it wasn’t.

2 days after I delivered, I couldn’t breathe…coughing and choking on top of a C-section incision is no fun. My sister ran for help, my mother prayed in tongues at the top of her lungs, and the nurses (who were in the middle of changing shifts, as of course, I have fantastic timing) & doctors realized I was in severe congestive heart failure. Over 20 pounds of fluid were drained out of my heart and lungs in the next 24 hours, and I went in for the fight of-and-for my life….while also trying to be a new mom to a premature infant.

Peripartum cardiomyopathy with congestive heart failure and pulmonary hypertension became the noose of a diagnosis that hung around my neck for the next 6 years as I went from specialist-to-specialist, trying to find a cardiologist that would both “fix” me, and would work with me as I wanted to try to have another child.

Once the heart has been blown up in CHF (my left ventricle was three times the size of the rest of my heart. I like to call it, “Grinch Syndrome.”), it tends to sort of hang around like a balloon that’s been overstretched. It’s kinda gross, if you think about it. My heart was literally broken in every possible way….by my body, by grief, by everything.

Image result for grinch's small heart grew

So, I had a few years of echocardiograms, medications, etc., until I found a doctor at Missouri Baptist that ordered more tests and found that my heart issues, outside of blood pressure, had miraculously resolved. I didn’t have any of the long-term problems they expected me to have, and we went on to have Jericho with the help of infectious disease specialists, cardiologists, perinatologists, and a whoooooole lotta grace from God….but it wasn’t without consequences.

As expected, even with a strict regiment of really miserable medications, I went into heart failure towards the end of my pregnancy with Jericho, and was rewarded with a lengthy hospital stay. After delivery, and after promising to never try to have any other children, I have a continued medication regiment that I’ve stayed on, and will be on for the rest of my life. I have my son; I have ZERO regrets.

The meds work great! Most of them are the same ones I’ve been on since 2006, with very few side effects, and with positive results. My CHF numbers stay low (the key number is the ejection fraction for the left ventricle. I’ve been under 10% before. My current numbers are around 40-50%, which is almost normal). My weight has been a challenge (particularly in the post-thyroid world), but has stayed in the same general area since my first pregnancy (give or take 40#. I gain, I lose, I gain, etc.), and my blood pressure stays under control with medication…it’s all working, which is crucial.

SO, why am I telling this story? Why does it matter? It matters, because YOU matter. 1 in 3 women in America are dealing with some sort of heart disease–that’s more than all other cancers, combined: https://www.goredforwomen.org/en/about-heart-disease-in-women

Per the Go Red for Women campaign, “80 percent of cardiac and stroke events may be prevented with education and action.” That’s what we can do. That’s what I can do–I can share my story, and maybe help others to become aware of the resources, the signs and symptoms, and the protocols that can help them understand heart disease more clearly. Knowing is the first step of prevention, right?

Today, my heart is functioning pretty darn well. In fact, I really don’t think about it very often, which is awesome when you consider that at one point, it was ALL I thought about…I couldn’t go up the stairs in my own home without feeling like I was going to pass out! I don’t have any limitations from cardiac issues, and I don’t worry about it…but I AM very conscious of it, and of paying attention to it when something seems “off.” I had some episodes last year of almost passing out. I wanted to ignore them, but I know better, so I called my cardiologist. Turns out, my blood pressure medication needed a simple adjustment….it was nothing complicated, and a simple phone call, and listening to my body, made all of the difference.

Take care of your heart, people. It really is the engine that drives you…and we all know that if the engine is broken, you’re not going anywhere. Love your heart….Live Fierce…and Go Red for Women!!!

“Stay Alive.”

Hamilton

I think it’s fair to say that most of life’s situations can probably be addressed in lyrics from Hamilton, if you look hard enough. That’s the genius of Lin-Manuel Miranda. If I had a .015% of his brain power, I’d have figured out how to make the whole blogging-thing a career by now. 🙂 Say what you will about the man’s politics–his creativity & talent are simply unparalleled, both currently and in history, and his ability to turn a phrase? RIDICULOUS.

You know what else is ridiculous?!?!?

The fights in this nation right now, over a simple, easy-to-use, potentially fashionable scrap of material.

Wearing a face mask has become this ridiculous, left vs. right, conspiracy-theory laden soap box, and it BLOWS. MY MIND.

the-universe-it-blows-my-mind

I’ve gotten to a place where I don’t feel like I can trust people, where what they say doesn’t match what they do….I don’t feel like people are being honest about their COVID exposures (like, why am I finding out that I may have had a secondary exposure, a week after the fact and through a different person than the one I was with?!?), or about their testing (I’m negative). I promise you, if I’m looking at you, I’m secretly wondering if you’re actually following recommendations, or if you’re gonna be the one that passes along a disease that could kill me.

That’s where I’m at.

I just want to “stay alive.”  I know that sounds dramatic, but tell that to the over 1,000 people in Missouri that have died from this garbage (& yeah, I know the amount of flu deaths is higher–this furthers the reason to wear masks during flu season as well as during the pandemic).

I fail to understand why wearing a mask, or a requirement to wear a mask, has become some sort of, “You’re inhibiting my freedoms! If you wear a mask, you’re just a slave to the media!!” HOW DID THAT HAPPEN?!?!?

Look, man, I don’t want to catch this COVID crap. I don’t want to inadvertently pass it along, either. I just want to “stay alive,” and I want my family to do the same. Wearing a mask may or may not be the “best” or “most convenient” method of prevention, but it doesn’t hurt. IT’S NOT HURTING YOU. It’s not hurting me, either.

Frankly (and this won’t win me any anti-mask friends), I feel like if you’re so selfish that you don’t want to wear a simple, little piece of cloth on your face, then maybe you need to check your heart. Are we so arrogant that we can’t stop and pause for a second, and wonder if we may inadvertently infect someone with this virus? Are we so arrogant, and so blind, that we can’t possibly fathom that we may catch this thing ourselves??

I feel like a certain faction is stuck in that whole, “well, nothing bad will EVER happen to me” line of garbage that some people like to believe (Christians are particularly bad about this, thanks to a hot streak of prosperity-laden garbage preaching in the 90’s). They’re stuck in this faction that they’re so awesome, that germs couldn’t POSSIBLY stick to them and be passed along to someone….’cause they’re PERFECT.

Y’all are delusional, and you’re gonna kill people.

PERIOD.

SO, now I’m struggling with not being in fear so much of the disease, as I am afraid of the lack of honesty and reality to the people I’m surrounded by.

If you’re angry at a store because they’ve decided to make it a mandate that you wear a mask when you go through those doors, check your heart. THEY HAVE EMPLOYEES TO PROTECT. They have massive liabilities, should they have a positive test affect their business. This nation hasn’t been this financially fragile since….well, since Alexander Hamilton built our financial systems. It’s only by the business practices of our current President that we’re not up a creek right now (say what you will about the man; his trade arrangements and positions on jobs are doing wonders for our country). Businesses need to stay open; people need and want to work. If your arrogant self marches in their store, even if you’re asymptomatic, and inadvertently infects people, then you could cause the fallout from this pandemic to continue going on for months…Or you could inadvertently be responsible for someone’s death from the disease…

Wearing this tiny, 4×6″ piece of material on your face ISN’T HURTING YOU. It’s keeping you from spreading as many germs, and it’s keeping you from inhaling as many germs (it’s obviously not fail-proof. No one is believing that lie). It may not be comfortable (I’m broke out from mine), but they’re inexpensive to make and to buy, and it’s a simple thing you can do to prevent and/or slow the spread of this disease.

I can’t understand how the anti-mask faction justifies the risk over their own comfort. Because people can’t be personally responsible and take control over their own actions, now the police and the government have to step in like we’re selfish little babies, and make masks a mandated thing.

Because people can’t be personally responsible and take control over their own actions, stores like Wal-Mart are requiring you to wear a mask for your own protection. How stupid is that, and how personally insulting is it that WAL-MART has to tell us what to do?!?!? WE LIVE IN A SOCIETY WHERE FRICKIN’ WAL-MART IS TELLING US WHAT TO DO. I’m offended by the fact that it’s come to this point (also, I hate Wal-Mart–but y’all already know that).

EDIT: I came across this meme and laughed so hard that I had to add it back in here. Please don’t be offended—okay, maybe be offended a tiny bit–but c’mon, you KNOW it’s true!!!!!!!!

WALMART

Look, I don’t particularly like wearing these dang things. I have to wear one in my office, so I get it…but I also, again, don’t know or care about the comings-&-goings of other people in my office. I don’t know or trust that they’re being responsible on their “off” time, and I’m not taking any chances. I know the science is questionable, and my trust isn’t in this little piece of material; my trust is in God.

The Bible tells us to ask for wisdom, and to act with wisdom. My wearing a mask doesn’t mean I’m a lemming or a leftie; it simply means that I CARE about my own health, and the health of those around me.

My wearing a mask means that I am doing a small part to help myself and those I care about, to avoid the pandemic and to keep us all working and living. I like this quote from Clare Johnson, “Mask-wearing is an exercise in the spiritual practice of love of neighbor. I wear my mask as a sign of my love and care for others, especially those who are most at risk. Jesus tells us that when we care for “the least of these,” we are really serving him. I believe that by caring for the most vulnerable among us, I am following Christ’s example.”

It’s the epitome of loving your neighbor–let that sink in.

Meanwhile, here’s a few more articles, if you’re so inclined:

https://biologos.org/articles/walking-by-faith-and-wearing-a-mask

Four Reasons to Wear a Mask (Even if you Hate It)

And this one, which draws some interesting parallels about salvation and masks (because we Christians love our parallels)…

Our freedoms are not being taken away because a store asks us to mask up–that’s a conspiracy-theory laden mindset, and you can go down those rabbit holes all day long. Just put some tin-foil over your ears, if that’s your line of thought. 🙂

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There are enough conspiracies out there that are MUCH more frightening than a simple, 4×6″ piece of materials, people.

Just wear the dang mask. It’s seriously not hurting you, and in some cases that you may never realize, it just might save your life.

And don’t get salty with those stores that are requiring a face covering–you have no idea what it’s taking for business to stay open right now, and if wearing a little piece of fabric over your pie-hole keeps this economy going? To quote a company I shall never name again, “just do it.”

For a list of Missouri mask requirements, click here.

For CDC mask information (which, as we all know, changes every day–this fact has NOT escaped me, people. I trust them about as much as I trust Missouri weather), click here.

And, to listen to the full soundtrack of Hamilton (because it’s amazing), click here.

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

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

Cardiology Update!!!!

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

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

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

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

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

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

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

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

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

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

BUT IT’S NOT.

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

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

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

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

*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?!?!?!?!?