“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!!!

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. 🙂