Just an Update...

I am overdue for a catch-up on this thing. It’s been over a month, and what a month it has been…

Halfway through the month of December, I had to stop my thyroid replacement medications (TRH) in order to prepare for the scheduled radiation tracer/whole body scan that was scheduled at Siteman on 1/8/16. You have to stop your meds for 2 weeks, because the meds suppress your Thyroid Stimulating Hormone (TSH) and your thyroglobulin levels (cancer/tumor markers), and your labs need to reflect your true levels. I’ve said before that thyroid cancer will not kill you (it’s true—it’s slow-growing, totally not aggressive—usually—and is easy to treat. You just remove the thyroid and do a simple round of radiation). Nope—the cancer won’t kill you. Getting the thyroid medications regulated, however, just might, as it can make you lose your damn mind. Once you’ve got it regulated, then you’re cooking with peanut oil…but it takes a really long time to do that, and it can change out of nowhere (weight gain/loss, solar flare, mercury in retrograde, etc…I’m kidding. Sort of.). So, we think we have my dosage sort of regulated…maybe…

That being said, I’ve fired my treating endocrinologist, because either she or her staff failed to communicate the correct dosage of my TRH to my pharmacy, and I wound up borderline-suicidal in a church parking lot, while my poor husband contemplating having my @$$ locked in the funny farm. It was a disaster. I transferred care to the Center for Advanced Medicine at Barnes (since all of my other doctors are at Siteman/CAM), and had my first appointment with the new doc this week. We’ll see how it goes; he seemed nice enough, but basically said I'm condemned to utter fatness for the next 6 months, and to stop beating myself up over it. I say "whatevs" to the skinny man...blah.

Anyways, back to December: I had to go off of the meds for almost 3 weeks. I had no idea what I was in for. The hormones your thyroid produces (and that the synthetic TRH tries to duplicate) affect Every. Single. Cell. of your body (http://www.bastyr.edu/news/health-tips/2012/04/what-your-thyroid-and-what-does-it-do).  Every one of them. When you have your thyroid unceremoniously removed (without notice or true explanation), or when you stop your TRH, your cells FREAK THE HECK OUT and you go into a horrific tailspin of exhaustion/psychosis/stupidity that is truly unprecedented. No one can prepare you or your family for the trainwreck you will become; you get super-emotional, you start gaining weight like a manatee (#15 in 2 weeks!!!), you can’t stay warm, and you don’t have enough sense to adequately explain what is happening to you, so your family just thinks you’re being a giant douchebag.You forget things, you have (-) energy, and your brain function declines into something resembling Silly Putty.

It sucks.

That was my Christmas.

And then the floods came. 

JD and I were staying at my parents’ house, which was supposed to be a time of rest for me. However, their basement flooded, and they had to unpleasant task of keeping the water at bay. JD had to be corralled into the largest room of their house, and I had to chase him more than I physically could…and THEN the highways closed, so David couldn’t come get us until New Year’s Eve. We were all exhausted, JD was out of his routine (and acting out), and my “break” wound up being incredibly stressful for ALL of us. Honestly, it was just a total comedy of errors that was further complicated by nature…I’m grateful to my family for letting us stay with them, and for as much help as they were able to give with JD when I wasn’t able to manage him at times during the day…but it was definitely difficult.  By the time we were finally back home, my bed never felt so good (and I really didn’t want to crawl out).  I still had to go back to work for 1 week without my thyroid meds; by the time the week ended, I was only able to work a half-day before coming home and sleeping it off for a few hours. BRUTAL.

On Friday, 1/8, David and I headed to Barnes for my baseline scan (I’d had a radioactive tracer two days before). The scan took about 90 minutes, and afterwards, we headed to Siteman to get the interpretation. I already had my lab results, so I knew my tumor markers were up, and that my cancer was back. I was totally prepared to deal with that—you take a dose of radiation, you start your thyroid meds back up the next day, and all is well for 6 months. Except….

That didn’t happen.

My scan was negative.

According to the Radiation Oncologist, because my labs show that I have cancer, but my scan can’t find it. They believe the cancer cells are now “smart” cells, and no longer uptake the tracer radiation/treating radiation, so the next move is to have a PET scan at the end of this month. I really don’t like that idea; to me, PET scans tell you a lot of stuff that you don’t necessarily WANT to know…I realize that I’m being ridiculous about it, but in my gut, that’s one test that I’ve never been a fan of. It’s the equivalent of someone asking you, “How are you?” and instead of you answering with “Fine, and you?” you instead word-vomit on them with everything they ever wanted to know about you, your day, your ancestry, and your Instagram of what you had for breakfast. It’s too much information, and more about myself than I really want to know.

I told you I was being ridiculous about it.  It really is the best kind of scan for what I’m dealing with (which is NOTHING. Slow-moving, non-aggressive cancer that really should be called something else.). It’s just super-invasive to me, and something I’m not looking forward to.

I’m disappointed, kind of scared, frustrated at the lack of time/money, time off of work. Driving to-and-from Barnes is an exercise in anxiety-management for me, dragging my family into this for care of myself and/or my son is a pain, blah, blah, blah, blah…It’s stupid. I’m totally not cool with what’s going on right now. I’m resigned to it, but I’m not cool with it. My biggest frustration is the nagging question of “why” that I’m struggling NOT to ask God, but I find myself asking in the wee hours…Like, why are we dealing with this (after all we’ve been through, do we not have enough “credit” to get a “pass” of some sort?!?”)? Why can’t we just hit our “Easy” button? Do we get an “Easy” button? Did we piss God off some way, that He’s hitting that “smite” button? Are we cursed? People must think we’re cursed at this point…or just, like, really, really bad sinners, that we’re dealing with this kind of judgement on our lives…

I am ridiculous.

As soon as these questions flash through my brain, I smack them down. They’re gnats from the enemy, annoyances that attempt to embed in my heart and my brain, to take down my spiritual life. I see them for what they are, and I try not to give those thoughts the time of day. They only lead to pain in my heart, and they’re ultimately pointless. I want His will, and I want to lean on Him. I want my husband and family to lean on Him. I trust Him, even when I’m not seeing Him clearly, which I’m not right now.

He knows what He’s doing, even when I feel ultimately perplexed. This is a season, and it will all be clear at some point. He lets me know through random things that He’s here, and He’s listening; that He has a point, and that He loves me ferociously. That’s what I can focus on. A lot of people are going through a LOT worse, a lot harder, and I really have nothing to whine about. It’s the aggravation more than the physical issues that I’m struggling with; I know SO many people that are dealing with BOTH, and my heart goes out to them. They are far more deserving of prayers, meals, hugs, etc., than David & I are, because we are not dealing with a severe issue here.  My TRH is regulated, and as long as I stay on it, I’m good. I’m back on it now, so my life is fine, even with the PET scan looming at the end of this month.

We’re good. We’re fine; JD is getting back into the swing of things, and after a week of being a Tiny Tyrant, he looks like he grew 3” and has finally calmed down. We are well, we will continue to be well, and we are thankful for the health care providers that are in communication and are managing my issues.

That’s my update…Now, if only I could nap….a lot…

Publishing the Unpretty, AKA, "There's No Such Thing as the 'Good' Kind of Cancer."

I’ve had a few people ask for an update lately, and I have to say, it’s a lightning-rod topic.

This is the part where I remind myself of the person that told me I should never write a blog and not somehow find a way to end it on a positive note…It’s also the part where I remind myself that I promised myself to be honest and real, even when it’s ugly.

It’s gotten really, really ugly.

Sure, minus the gigantic scar across my throat, physically, I look fine. The hair loss that’s a side effect of such large doses of Thyroid Replacement Hormone has begun to decrease…I think. Fortunately for me, the biggest part of the hair loss has been at my temples, so my existing hair covers it fairly well. I cut my hair when all of this began, and as long as I am sure to tell my stylist my issues, you’d never know that I threw around 30% of my hair away this fall. I can’t really color it right now, due to the meds, unless I pay a professional; therefore, my ashy-grayness is starting to come through (if I try to color it myself, I’m guaranteed to go orange, or so I’ve been told). I have the deepest of sympathies for women who lose their hair in chemo/radiation; I had no idea how much my hair meant to me, until it started falling out. It’s pretty emotional.

I have come to the realization that thyroid cancer won’t kill you. That’s why they call it the “good kind” of cancer. You know what will kill you?

Yourself, on Thyroid Replacement Hormones.

This roller coaster of figuring out the right TRH is MADDENING. It’s heartbreaking, confusing, and gut-wrenching...it robs you of your sanity and your dignity, and leaves you doing things like yelling at random teenagers at church or sobbing on your husband in a parking lot after you’ve just told him to f--- off for the third time that morning (when you would normally probably never say such things, to said person). It makes you unsure of your abilities in your job or as a wife and a mother. It makes you call your mother and probably scare the crap out of her, because you’ve done lost your damn mind for the millionth time that morning.

When you already struggle with anxiety and PTSD, TRH makes you paranoid and swearing every cough your son has, is his last breath.

When you’re already exhausted from the physical effects of having no thyroid, TRH makes you swear that your husband hates your very existence and would be better off with your life insurance money.

TRH makes you believe the lies of Satan, and convince yourself that God did this to you on PURPOSE.

Sure, I look fine….

But I’m falling apart.

The thyroid meds are unavoidable.  I have to take enough TRH to keep my Thyroid Stimulating Hormones at 0. They’re currently at 1. If the TSH can’t stay at 0, it will basically cause my body to think I need another thyroid, which it obviously can’t duplicate, and will instead generate another tumor and cause my cancer to return.  So, I can’t just stop taking it; I’m on my 4^th different medication, and Lord knows HOW MANY dosage alterations.

Monday-Saturday on the meds (by the way, they’ve changed my meds every 6 weeks since July. I can’t get used to the meds before they’re being altered, so I can’t regulate), I’m “okay.” I say “okay,” because the anxiety is manageable. I can talk myself off of my own ledge, or I can focus and pray and handle my business.  It’s 180mg/day, and it’s okay. 

Sundays, though…I dread Sundays, and I believe my husband does, too. On Sundays, I have to take a double dose . I’ve done it the past 2 Sundays, and I swear, it’s like a freight-train through my brain and my emotions. I could literally rip my own eyeballs out (I’ve already ripped my fingernails off as far as I can). It’s uncontrollable.

My poor husband—he doesn’t understand why I can’t “just stop it.” I have no reference to make this make sense to him. This past Sunday, he took me to a park and we walked for what seemed like hours while we troubleshot some different ways we could alter the medications. Can my Wellbutrin be increased? It’s been the same dosage for 2 years. Can my TRH be taken 1.5 pills for 2 days/week, instead of 2 pills on 1 day/week? How do we handle this? What do we do? Do I need a monitor to keep me from jumping off of the roof? Should he take my other meds away? Some questions, I asked; others, I didn’t, because I didn’t want to scare him. Always the problem solver, David and I finally decided that I should contact my PCP and my endocrinologist, and have them figure it out; also, I’ve left a message for a psychiatrist who may be able to better help me deal with the fears and uncertainties that cancer leaves. The reality is that in the last 12 months, I’ve lost my ovaries, my uterus, and my thyroid. I don’t know of any sane woman that wouldn’t be a little messed up from losing just one of those. Losing all three of them, and dealing with all of the awful, synthetic replacements for them, is enough to make anyone go ballistic.

We had Benefits Enrollment this week, and we also set up a Trust Fund for our son. Dealing with so many uncertainties (what will this plan cost? I’m probably gonna meet every deductible they throw at me…what do we allow for? Could I have a reoccurrence? Do we have Critical Care/Cancer Care insurance available? How we decide to care for our son if we die?) left me feeling particularly vulnerable, especially since we met with the attorney for the Estate Planning on what should have been Hannah’s 9^th birthday. It was a very emotional process, and one of those occasions where I wish I believed in recreational marijuana, quite frankly. Being stoned sounds a lot better than contemplating the reality of mortality  (Not a very Godly way to handle things, right? It’s okay. I’m still a Christian, even during those times that weed sounds fun. Never tried it; never even had a cigarette. Don’t worry, folks). 

Those people that are able to lay everything at the feet of God and just walk away—those people that seem so able to release the burdens of this world—I want to be like them when I grow up. There’s a lot that I carry around that I’d do a lot better leaving at the foot of the Cross. All of the stress of this medication has me really struggling with anger (which has been a real problem through this process), and on Sunday, I actually got angry with God. It’s really easy to fall into the trap of “why do You keep letting all of this crap happen to us!?!?!? What did I do to deserve all of this?!?!?!?!?”

It’s a struggle, to stay out of that mindset. I know the “reasons” for illness, and that it’s all the result of living in a sinful, broken, jacked-up world. I know God is bigger.

More importantly, I know He loves me, even when I’m not feeling all of those lovely warm fuzzies.

I’m in a rough place right now. I’m hoping my doctors can work together and figure something out, because my family deserves the very best of me. Right now, they’re kind of getting the worst. I’m getting the worst of me, because in this state, I don’t even like myself.  Motherhood is seriously the biggest, greatest motivator to keep going, and keep letting them alter the meds until we get the dosage right. If not for that, I think I’d at the very least not be leaving my bedroom.

Thyroid cancer…

I swear, if one more person tells me that thyroid cancer is the “good kind of cancer,” I’m going to punch them in the throat as hard as I possibly can with my left hand….and when they’re choking and bleeding on the pavement, I’m going to say, “Gee, at least I hit you with my ‘bad’ hand. Could’ve been a lot worse with a right—that’s my ‘good’ hand.”

“Good” and “bad” can be pretty darn relative.

Like Butter on a Bald Monkey...

If you’re wondering about the title…if you missed the joke, and just think I’ve lost my mind…rest assured: You’re probably right.

But seriously, I have a deep, deep love of classic VeggieTales. That line comes from the “Dance of the Cucumber” song, and is actually sung first in Spanish; it sounds even funnier in a foreign language.

All that aside, I’m actually just writing this as a “quick” update on the whole cancer thing. You know, even though thyroid cancer is the “good” cancer, there’s a surprising amount of stress that comes with that word being a part of your life. There’s really nothing that prepares you for it, at any time, at any age. It’s just a shock to the system that takes some time to acclimate to. You find yourself being very quickly swept into the vernacular of cancer…into the relentless questions and internet searches, into multiple doctors’ appointments (even for “good” cancer), and into the belief that this word is hanging over your head like the proverbial Sword of Damacles. It’s like a little (in my case), dark cloud that smacks you in the head with a stinging raindrop on a day that you’ve spent an hour fixing your hair. It’s an obnoxious pest that isn’t going away any time soon…After all, it will linger on in medical records for your entire life span. You’ll never be able to leave that box unchecked again.

Now, I’m quick to differentiate my case—the “good” cancer—because I’m not really allowed to be a basketcase/whinebag  in the grand scheme of things. I have a friend who’s sister-in-law (a single mom with two kids and no child support) who’s dealing with 3 different kinds of cancer at once. She has like, 75 radiation treatments (to my one) and chemo (to my none); she isn’t able to work; and the doctors are giving scary prognoses that I don’t even want to put into writing. She has a lot of potential, but she needs a miracle. She’s too sick to work, her hair has fallen out, and she’s still looking at surgery after all of that. THAT is the “bad” cancer.

The “good” cancer scares the crap out of you and inconveniences your life. It doesn’t kill you, and it really (after the initial shock) has little-to-no chance of killing you down the road (if you’re a good girl and regularly do your labs and take your medicine). It changes your life, sure…but not like what my friend is going through. Please understand that when I do complain, I have that in the back of my mind: I am so lucky. I don’t know why I’m so lucky, but I’m grateful.

That being said, I have my own issues. They’re doable, just annoying. My case is a bit odd; in fact, my PCP is sending me for a second opinion, because my treatment thus far is pretty laid back (which appears to be the standard? Who knows?). We knew at surgery that there was a good chance they didn’t get all of the cancer out. One month post-surgery, I did my one-shot radiation treatment; it’s a pill. Just a simple, little pill that contains enough radiation to stay in your body for MONTHS…it’s bizarre, that such a thing exists. My post-radiation body scan confirmed that nope, they didn’t get all of the cancer; cancer cells were spotted in the lymph nodes of my neck and chest. My initial fear was “oh, crap—more surgery? More radiation?”  Nope. According to my current radiation oncologist, the little radioactive pill I took contained enough radiation to slowly-but-surely kill those cells off over the course of the next few months. I have labs every 6 weeks (for the next 2 years, I believe) to make sure my TSH and my Thyroid Globulin levels drop; those levels will let my endocrinologist and oncologist know that the cancer isn’t staging a comeback tour.

Now that the cancer is “dealt” with, the next-and-biggest issue is the fact that I don’t have a thyroid. This is a much bigger problem than I ever knew. Dude, your thyroid is IMPORTANT. Take care of it!!!!!!!!  Dr. Oz says that 2 Brazil nuts/day contain enough Selenium to support proper thyroid function. Yeah—do that.  Your body will thank you. I’m on a medication that I just found out is causing my hair to fall out—MY HAIR. If you know me, you know my hair. My hair is its own entity. I love my hair—it’s a great, big, giant curly mess that took me years to learn to control, and it’s just a big part of my ever-shrinking self-esteem (this is not a pity party. This is just a statement. It’s a struggle). Having handfuls of my hair fall out every day has taught me that first of all, I have a LOT of hair. Secondly, it’s a daily reminder that it could be SO MUCH WORSE. It’s another of those things that’s seriously annoying, but nowhere near as bad as other people have it. It was a bit of a shock, when it first started happening (2 weeks ago); I knew it wasn’t from the radiation. I assumed it was from not having a thyroid anymore. Yesterday, I found out that it’s from the medication (T4) I’ve been on (that just got increased); I’m going to have to stay on it a little while longer, but my doctor is putting me on something else that combines T3 and T4, which should stop (and hopefully, reverse) the hair loss. I still think I need to cut it, but I will be so thankful when it stops!!!! 

I want this to be over. I want to be done with it, and I never want to hear that word, again. I’m sure anyone else who’s had cancer can relate (regardless of whether or not it’s a “good” or a “bad” cancer). I know people who are dealing with daily radiation, daily labs, daily “inconveniences,” and I am amazed by their strength and courage. I’m a giant pansy—this has taught me that. I have a lot to learn. I feel so guilty for the complaints that I’ve made, but I also don’t want to pretend that certain complaints aren’t valid. It’s a weird, uncomfortable, strange path to be on, and it’s very isolating. Family and friends are supportive, but this type of cancer is so odd that you feel like you’re on this island where nobody “gets” you. “Regular” cancer patients think you’re a wuss, but really, the sheer removal of the thyroid is insanely debilitating. Getting the medications regulated isn’t easy (I’m finding that out), and the side effects are widespread. Sure, this is the “good” cancer…but it seems to me that it’s a “bad” organ to have removed. I may look like I’m fine (minus the thinning hair) but the reality is that I’ve got a ways to go. That takes some getting used to, especially for the people closest to me that have had to pick up more slack than usual for some time now.

I am most definitely feeling better. My voice is coming back (although an upper respiratory infection has me sounding nasty right now), and my energy levels are picking up. I think I’m emotionally in a better place than I’ve been in for a while, and I feel like I’m coming back around. Frankly, I’m glad to see the end of this summer; although I’ve had a lot of fun with my little guy and my family, it’s been a roller coaster for all of us, I think.

I think I’m hoping for some smooth sailing…at least, for a bit…

Smooth….like butter on a bald monkey.:)

Thyroid Cancer and Panic! At the Parking Lot

I’ve tried to make myself maintain a pretty decent attitude about this whole cancer thing. After all, this is the “best cancer you can get,” right?
Sure…up until I found out it was in my lymph nodes. I tried to limit the amount of Dr. Google-ing, but I also want to be an informed patient who isn’t a doormat to an overbearing doctor (that I hadn’t met yet). So, I did my research, and found very little about what changes when the cancer metastasizes. I also didn’t find any information about a tumor the size of mine. By Saturday, I had a friend over that had also had thyroid cancer, but hers hadn’t spread. She eased some fears, and was a great listening board to the spiritual aspect of The C Word.
After all, no one expects to hear THAT WORD, especially at 37 (my friend is in her 50’s,  and is more in the typical demographic of this  kind of cancer).
By Sunday evening, I had a volcanic meltdown over not being able to find what I want in my house, when I want it…about a leaky roof…about a rebellious body…and about this bloody fatigue that is like a lead cloak. David informed me that I had lost my damn mind.
I’d say that although that was true (and he was entitled to say that, as he was the one catching my ridiculous freak-out), his timing could have used some work…and by the end of it, our trashcan was full of God-knows-what, and I was too tired to sleep.
I went to work as usual on Monday, with a careful eye on the clock…I was having another “Monster At the End of this Book” moment, except this time, I already knew the monster at the end was me…but it was Me + Cancer.
I have continued to have this image of myself in my head, of standing on the edge of a cliff while a tornado bears down on me. I have nowhere to go; all I can do is watch it coming, and know that it’s going to hit. All I can do is pray.
When I pray, I see myself as a child, sitting at my Father’s knee…”Abba, what is going to happen to me?”
It is not that I don’t trust Him…it is more that I do not do well with The Unknown….it is that I have a promise of a long life, but I do not want to see the quality of that life compromised. It is that my husband has had to carry so much, and I feel I am a  burden when I shouldn’t be…It is that my mother should not have to once again, watch her child deal with yet another medical issue. It is a myriad of questions, methods, lifestyle choices…and it is all under the lead cloak of fatigue that comes from currently having no thyroid.
I do not consider this a series of Dark Days…I consider this a series of Tumultuous Days.
And I consider this a far shorter series of days like this, than for people with more serious cancers.
Thyroid cancer truly is very treatable.

So, yesterday afternoon, we arrived at The Cancer Center at St. Anthony’s. Just being in the parking lot set off the waterworks and a huge wave of panic; I truly, seriously wanted to grab the keys and leave, and just forget this whole thing ever happened. I literally could not get out of the car. David came over, opened my door, and took my hand: “C’mon, honey.” (BTW, my son says that now. It’s adorable!)
I checked in at the window, and was promptly given a card with a barcode on it. “Whenever you come in for treatment, just scan your card, and we’ll know you’re here.”
A Barcode?!?!?!?
The waiting room was full of cancer information; in the corner, a cabinet with complimentary wigs and hats was there for patients who needed chemo. My stomach churned; I did not want to lose my dignity in a waiting room with other patients who were no doubt dealing with far worse.
My name was called…It was TIME.

We knew our consultation would be an hour; it was 2 ½  by the time I had my labs drawn. My doctor is actually the Medical Director of oncology, and I was extremely impressed by her caring nature and clear way of explaining what was happening to me. She understood that she was dealing with someone who was in a thyroid-less brain fog, and she took her time with David and I. A protocol was established; lines were drawn. Definitions were given, and an excellent prognosis was reached.

All will be well…which I knew…but it was wonderful to hear it.

The details: I have papillary thyroid cancer, metastasized to the lymph nodes. The tumor was large enough to break through the “capsule,” and grew into the skeletal muscles of my sternum. This means that during my surgery, a lot of mass was scraped off of my trachea (yeah, that’s fun). The tumor also snuck into my lymph nodes; although one was removed, the margins of the cancer within that node were too close for comfort, so it is assumed that it spread to the surrounding nodes of my neck.
Normally, with this cancer, they do a baseline scan to determine whether or not the surgeon removed all of the cancer; then you take a radioactive iodine pill, stay in isolation for 3-5 days, wait a few more days, and then they do a second scan to make sure the cancer is gone. The radioactive iodine pill treats and destroys any remaining thyroid cancer cells, wherever they are in the body.
They are pretty much positive that the surgeon was not able to remove all of the cancer cells (due to size, entanglement, etc.), so my doctor is being very proactive. We’re skipping the first scan, and going straight into treatment. I’ll take my awesome pill (truth be told, this will probably make me pretty sick. I’ve got some prescriptions to take the edge off, but I’m not optimistic about this part, just based on my history). I’ll do my isolation at my parents’ house, return to work after 3-5 days away, and have to stay separated from my son for a week (worst part). 5 days after I take that pill, I will finally, FINALLY start synthroid, and be on the way out from under this evil, evil, evil fatigue that is frying my brain.
7-10 days after I take the pill, I do a full-body scan to make sure that Ding-Dong, the Cancer is Dead….once I get a clear scan, we wait 6 months and do follow-up work. I’ll do the same routine every year for 2 years (good to know my vacations are planned, boo); 2 years of clean scans, and I’m clear with just regular lab work. 

The doctor did a great job of explaining the severity of the cancer. Had I been over the age of 45, this would have been diagnosed as Stage 3 cancer. Since I’m only 37, it’s Stage 1. I have never been so happy to be the age that I am! My age means that I have a higher chance of recurrence, but not for a long time (like, decades). I’m really not concerned about that. Once I’m through the body scan, I am prepared for a radical lifestyle overhaul. I have a son to raise, and I’ll be damned if my love of Nutella gets in the way of that. 

So, after all of the emotions of coming face-to-face with The C Word over the weekend, and of nearly passing out at the sight of The Cancer Center, I believe the hardest part is now behind me. The psychology of cancer is overwhelming, and because I already struggle so much with fear and anxiety, maybe it hits me a bit harder than the average person? I’m sure of it. I’m very thankful for your continued prayers; I know this is going to be okay (and I knew it before; it’s just not a fun thing to go through), and that the Lord understands me where I am, and the way I am. He gets me, even when I’m ranting about sippy cups and egg separators.
I hugged my son last night, tighter than ever. We were watching “Up,” and so much of Carl and Ellie’s story has been our story…from cracking into our savings account for flat tires and medical bills, to dealing with being told we would never have another child, after Hannah’s death. When Ellie gently touches Carl’s face to say goodbye from her hospital bed, I bawled. That’s the hardest part of life…saying goodbye.
JD saw me crying, and promptly ran over to me. I didn’t mean for him to see me like that…but his little hugs were the sweetest thing ever. How I love that boy…How I love watching him grow…
We have a long, beautiful life together to do just that…Me, David, and our Bug…

Happiness, Joy, and the BS of Cancer...

Updates….

I feel like it’s been so long since I blogged that if I start writing, I’ll have that Great American Novel ready to go, before I can stop…It’s been a while; I think that despite my best intentions, motherhood/employment has me putting writing on the backburner.

And that’s okay.

I officially give myself permission to write when I can.

A few weeks ago, I thought, “Sheesh, it seems like I only write when I’m struggling with something that I just can’t process any other way. Things are good right now. Guess I have nothing to write about!”

Oh, how a few weeks can change things!

Sometime during the month of April, I was driving through our valley with my son in the back seat, and I was thinking about how beautiful life is for our little family right now. After so many years of heartache, our little world was as picturesque as the scenery I was driving through….but before I could embrace the happiness of that moment, I had an internal fight:

“Don’t say you’re happy. Don’t say it out loud. If you say it out loud, it will be taken away from you. It always is. You’re not allowed to be happy. God doesn’t want you to be happy. You’re not allowed to be happy.”

“That’s ridiculous. He loves us. We ARE allowed to be happy.”

“No, you’re not; just look at what happened to David’s job, to your daughter, to your car—you’re NOT allowed to be happy. God wants you to struggle so you can be broken and totally rely on Him. You’re NOT ALLOWED TO BE HAPPY.”

“I refuse to accept that.”

SHOUTS IN CAR:” I AM HAPPY!  I AM HAPPY!  (Toddler looks up in back seat, smiles beatifically, claps) I AM HAPPY!! THANK YOU JESUS! THANK YOU FOR MY FAMILY! THANK YOU FOR MY CAR! THANK YOU LORD!”

I was so nervous, so scared to proclaim my own joy…it was an unbelievable fight, to make that declaration…to state for the record that yes, Cassidy Sarah Cooley is irrevocably HAPPY.

The next internal monologue went as follows:

“Oh, NOW you’ve done it. NOW you’ve pissed off The Enemy. Now he’s going to come at you full-force; you’ll be lucky if you have a roof over your head, by the time he’s done with you. It’s gonna be Job all over again, you idiot. Why’d you have to do that? Why’d you have to flaunt your happiness like that?!?!?”

“Hey! It’s okay! God is bigger, He’s greater, right? God gets the glory in all of it-Jesus loves me, like the song says! It took me so long to say that I honestly feel like He loves me…there were so many years of feeling like the heavens were silent…but they’re not, and He’s not, and even when I don’t hear Him, I know He’s there, and I know He’s not the Cosmic Killjoy that was beaten into my head. I am allowed to be happy because He is a God of joy! And even if the world caves in, I know He’s there…it’s okay.”

Jesus gives us permission to be happy, in a world that tells us we have to be afraid of having it all taken away.

He gives us permission to be happy in the face of the unknown, to have joy in the face of “what if?”

He not only ALLOWS us to be happy; He CAUSES us to be happy. He is the Bringer of True Joy, and He celebrates those moments with us. He gets no pleasure from our sadness; why do we paint Him to be such a masochist? God does not manipulate us to get His way by forcing pain and sadness in our lives; the Church has done a marvelous job of treating Him like that’s His MO, but it’s just not true.

He loves our joy, and He uses it to bring us closer to Him. He can use our heartache to do the same, and I’ve seen that in my own life, but He doesn’t force it. Joy is a much easier teaching tool than sadness, I believe, and I love having it in my life after so many years of missing out on it (by my own decisions).

 So, there I was, celebrating my family in my country valley, singing along to the radio, and embracing joy in a whole, new way at 55mph, and attempting to stave off the figurative thoughts of “you’ll shoot your eye out” as I headed home…

Fast-forward a couple of weeks…

April 29^th, I had a routine physical. Toward the end of the visit (I had said I was feeling so much better, because I have a nebulizer now, and it’s a Godsend!), my PCP wanted to follow up on an enlarged thyroid that she had noticed back in November. My labs were all normal, so I wasn’t concerned, but she sent me that day for an ultrasound, which showed a mass.

Well, so what? 50% of women in my age bracket have some sort of thyroid mass/nodule. 95% of them are nothing…So, I didn’t tell anyone. My doctor said I had to have a biopsy, and I’d need help with Jericho when it was all over, so I waited a week, and reluctantly told my long-suffering husband, who agreed to come with me (I was afraid, at this point, because biopsies are scary).

Can I just say that biopsies in general are unpleasant? That was the first one I was awake for. I don’t want to repeat that procedure again.

In this age of modern medicine, that freaking biopsy was inconclusive, after all of that discomfort! I was then sent for a CT…also inconclusive. The only thing we knew for a fact was that the mass was about 1” around, it was on the left node of my thyroid, and my lymph nodes looked weird.

Great.

I was referred to a surgeon (who was super-kind about my vocal cord fears), and a date was scheduled to get The Thing out. 6/4, I went into St. Anthony’s (ST. ANTHONY’S?!?!? HAVEN’T I ALWAYS SAID I WOULDN’T SEND MY DOG THERE? WTH AM I DOING IN ST. ANTHONY’S?!?!?!?) to have a nodule/node removed, and a biopsy performed while I was in surgery. My parents, my extra parents, and my husband were all patiently waiting; we’d all prayed together with the OR attendants before the procedure, and as I went under, I was okay. One of the OR attendants was in the room for the sole purpose of monitoring my vocal chords. Cancer really didn’t cross my mind; just SAVE MY VOICE! The thought of my son growing up without me being able to sing to him was what broke my heart into a million pieces before this procedure; I could care less about cancer. I just need to sing. It’s like breathing for my soul, so knowing that OR attendant was there? THE BEST.

Anyways, at some point during the surgery, the biopsy came back. To everyone’s shock, I have cancer. Papillary Carcinoma-that’s what they call it. They say that if you’re going to get cancer, it’s the best kind, because it has the best prognosis.

The “best” kind?!? Ohhhhhhhkaaaaaaayyyy…Sure, if you say so.

It’s been kind of a rock-the-boat moment for the family; when I came to after the surgery, it was my poor mom that had to break the news to me. I have no idea why the doctor didn’t tell me himself, and although he seems like a kind enough person, I don’t think my mother should have had to do that. It’s a tremendous burden, to tell your child that they’re ill. I don’t care if I’m 37—she’s still my mother, and I’m still her baby. Some things, a mama shouldn’t have to do.

Either way, when the surgeon got into my neck, he found a mass that surpassed the 1” diameter that they thought they saw on the tests that I’ve probably paid a fortune for. Instead, the tumor was the size of a small lemon (or of a lime), and was so entangled that my entire thyroid had to be removed.

I really have to stop losing organs, people.

The Monday after the surgery, we met with my endocrinologist. Although I find her staff questionable (in both efficiency and in manners—I pull no punches when it comes to medical customer service), she seems to know her stuff (and I do not think she would be fun to work for, LOL—most geniuses aren’t), and I am hopeful.  She immediately started me on a drug called Liothyronine that was supposed to temporarily take over for my missing thyroid…but it made me incredibly sick. L This means that until I complete cancer treatment, I can’t take anything for my thyroid…which means

I

Am

Beyond

Exhausted.

It’s like, New Mom Tired x 1000%.

I’ve never been so fatigued in my life; I’m so thankful for David, because he’s working overtime to pick up my slack.

Next week, I meet with an oncologist to determine the course of treatment. The “nice” thing about thyroid cancer is that (from what I’ve read) you have a radioactive scan, then a radioactive treatment, then a radioactive scan, and then you’re done, until you have to repeat the scan next year. Thyroid cancer cells react differently to radiation, so you don’t have to have repeated treatments or chemo like with other cancers. I believe that even applies to my lymph nodes; according to my pathology, the cancer metastasized to my lymph nodes, but until I have the scan done, we will not know how much. The surgeon removed one lymph node during my surgery, so that’s one less mutant I have to deal with.

After the cancer treatment has concluded (which will involve some quarantine time), then we begin the process of working with the endocrinologist to get my thyroid replacement medicine figured out. That process is concerning to me…but we’ll take it day-by-day.

If you’re the praying type, here’s what we’d like prayer for:

• The fatigue…the mind-numbing, day-wrecking fatigue. I have a job, I have a child, I have a house. These are things that are incredibly important to me, and I need to keep all of them. I need them to not fall apart around my head. I need energy and I need to be safe about it. With my very complicated medical history, I’m not about to start taking any kind of supplement/oil/whatever that “gives you energy!!”  So, the fatigue is a huge hurdle for me and my family.
•  Radiation: I have a history of getting very, very sick from radioactive isotopes. In fact, I don’t eat shellfish, because after an arthrogram in 2000, I was so sick that my MD told me since radioactive isotopes are derived from shellfish, I’d better stay away from iodine and shellfish for the rest of my life. I miss crab legs…and I am very concerned about any kind of radioactive anything. This will be a big part of our discussion with the oncologist.
• Quarantine: I don’t know how we’re going to do this. I know where I’ll stay, but I don’t know how David will manage with Jericho.
• Thyroid medication: I’m asking for prayer now, because figuring this medicine out can take some time. I can’t start it until the cancer treatment is concluded; I’m praying that it’s figured out quickly, so I can get some energy back.
• Our House: We have some repairs that need to be done. They’re not urgent, but they bother me. I’d like to get them out of my brain.

I’ve spent all of this time going over all of this medical stuff, but I opened this very long blog with an internal monologue about being afraid to celebrate happiness, because I just knew that if I did, my world would cave in….and sure enough, I freaking got cancer.

What does that say, and how do I respond? How do I respond to people that say stupid things like, “Aww, you just can’t catch a break, can you?” “You just have the worst of luck!”

Here is how I respond:

I had that thought the other day: “Aww, man, just as I say I’m happy, just as I’m finally bold enough to say it out loud, I get this. What the crap, Lord?” My next immediate thought was: “NO!  NO!!  I am NOT going down that rabbit hole!!! NO! I did NOT get cancer because I decided to actually admit that I was happy!!!!!!!  And it’s not ‘WAS’ happy! I STILL AM!!!!”  God did NOT give me cancer, or allow me to get cancer, because I said I was happy! What a crock! What a load of crap, that we let ourselves believe!  These are the thoughts that as Christians, we have to take captive. We can’t explain the whys and the hows, but we can’t let them run our lives, either. That’s such a pitfall—we can’t get stuck in all of that.

Do you know what I know?

 I know facts: Thyroid cancer is easily treated (although this process isn’t fun). It has a low chance of recurrence (although it is possible). Statistics are crap (I had a 5% chance of getting this stupid thing). I have wonderful health insurance (although I’m sure this is gonna cost us).

I know other facts: My family is an incredible support system. My husband is amazing, and we will figure out JD’s care. JD’s daycare is fantastic, and is very understanding. My employer is understanding, and I am incredibly grateful.

Most importantly, more than facts, I know truth: Jesus knows the outcome of all of this. He is the source of true joy, in easy times, and in times of struggle. My picturesque drive in April was indicative of putting grain in a storehouse; those times when things are beautiful and perfect? Those are the times when you get your battle gear prepped and ready. You know it’s coming. I had that feeling back in April; when I really sat down and meditated over my drive, I felt like a battle was on its way, and I was right. Times of peace are not times of laziness; they’re times of reparation and preparation. You can have joy in both times of peace and times of war; God is the same in both.

Why have I had one medical thing after another? I have no idea. I don’t know how to answer that question, and when I’m asked, I’m embarrassed about it (please don’t ask me that question). I don’t know, and I don’t understand, and I don’t know how to pursue an answer (if there is one). I know that’s a field-day question in my head, and it’s a constant source of shame that I struggle with. I just don’t know, and outside of determining to make healthier choices, I don’t know what to do. I’m praying for wisdom in that area, in particular…for the self-control to do what I know I need to do, and for the discernment to know what information I’m given is actually good, solid information.  After working in alternative healthcare for 11 years, I have a ton of resources to dig back through, which is in process. It’s a lot.

On Sunday, my husband was sitting on the couch. I was so tired, that he took my hand and pulled me into him; he is so strong, and has the most amazingly broad shoulders. I laid there, snuggled up into him, and JD crawled up on the couch. The three of us sat on our old couch, snuggled up, watching TV, and I thought back to my drive in April, where I shouted how happy I was in my car.

I’m happy.

I’m so happy.

I’m deliriously happy.

I’m going to continue to say it in the face of this gnat called cancer, not because I’m trying to be brave, or out of some false sense of duty, or to elicit some kind of a compliment or response.

I’m going to continue to say it because it’s true.

There is wonderful, beautiful joy in my heart because I’m not chained by the thought that trials mean God doesn’t love me. Life IS hard. Things suck sometimes. Jesus LOVES us—He has crazy, insane love in His heart for us, for ME, and the ups and downs in my life do not determine the level of that crazy love. He just loves—it’s what He’s made of!!!  MY TRIALS DO NOT DETERMINE THE LEVEL OF HIS LOVE FOR ME. I’ve said it twice—I need to tattoo it on my head, for when I am tempted to get trapped in that mindset.

Sometimes, my trials affect my love for Him. Sometimes, I get mad; I say dumb things, I forget His provision, and I let all of that steal my joy—it happens, and I’m sure it will happen throughout the course of this cancer-schmancer BS. That’s okay. He still loves me the same. He’s not a stupid human that’s occasionally ruled by her emotions.

He loves me.

Because He loves me—There is joy in the sucky parts of life. And in the awesome parts of life. And in the mundane parts of life. There’s joy. His joy.