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…

"Storyteller...."

I am a born storyteller.
I don't say that in an arrogant way; it's just part of who I am, and how I live. I'm from such a colorful family that I think I came into being a storyteller in the most organic way possible. We're just a fun, crazy, vibrant bunch of people that live in superlatives. I can't tell you about anyone in my family in a simple, short way. We're all too complex...but then again, isn't everyone?
I married another bright, colorful, emphatic person (although people don't always see that in David, trust me when I say that he's funnier than all of us. You just have to wait a little bit...) from a hilarious family. We're all as they say, the "salt of the earth." We're honest (to a fault), ornery, ferociously loyal, and just...well, we're just US. You can't survive in that kind of family without learning to relay your experiences to others (if anything, just for the moral support, LOL!), and in doing so, you have to learn to fully describe/justify/embrace the crazy, so you become (in the best of ways) a STORYTELLER.

I love songs that talk about the stories of our lives. I fell in love with a song called "Happily Ever After" by He Is We a few years ago; the lyrics caught in my head, and I find myself humming them in various moments:

"We all have a story to tell. Oh, happily ever after, wouldn't you know, wouldn't you know.
Oh, skip to the ending, who'd like to know, I'd like to know.
Author of the moment, can you tell me, do I end up, do I end up happy?"

Everyone has a story to tell...and sometimes, all we want to know is the final answer.  Do we end up happy?

That's the greatest thing about knowing Jesus: Yes. Yes, we end up happy, and we end up happier than anything we could have ever realized on this earth. That's the assurance we have, and I've had to embrace that assurance just to keep breathing, more times than I could tell. No matter how this life ends, we have that hope, and I can tell you, it is more than a figment of my imagination. Heaven is real; Jesus is real, and His salvation is tangible. I've felt Him embrace the most broken of hearts...I have no doubts in His existence, and I have no doubts in what His love can do for your life (end mini-sermon :))

Someone posted on Facebook today, and asked what the greatest thing we've learned in 2015 was. My first reaction was, "Well, honey, the year's not over yet!" I've learned that no matter how much I want something to be over and done with, it's not over until the clock strikes midnight on 12/31. Frankly, I'm DONE with this year. It's been a difficult year, but it certainly hasn't been my hardest. It's just been confusing and frustrating, but far from heartbreaking. I answered the post and said three things: 

1. I've learned about brokenness in new ways (that word, "cancer" will do that to you, even when it's an easily-treatable one. It still hurts.).
2. I've learned about motivation (knowing that you have a toddler to take care of, will motivate you when you think your strength is gone).
3. I've learned a whole, new definition to the term "teamwork" (I am terrible about telling my husband what a team we make...how helpful he can be...how shrewish I can be, about things like socks on the floor, when he's come home and taken over caring for a Tiny Tornado because I'm too exhausted to move. Knowing he's coming home, and that my little family is complete, is a joy to me every single day. I love that man, and I wouldn't have picked anyone else. Also, my mom and dad have stepped up more times than I can count, in helping us through this year...I can't imagine life without them).

There's a lot more I could say, that I've learned...I've learned about different ways to have fun, I've strengthened some relationships, and ended others. I've embraced changes and fought changes, and just...changed, hopefully, for the better. I've let go of a few wishes and allowed "pause" to affect my dreams. My dreams have changed, and I can feel even now changes coming to the desires of my heart...Things I never thought I wanted are knocking on my heart's door, and I don't know how it's going to play out, but I know if it's of God, He will work it all out. There are mysteries to come, and changes to come, and I know 2015 has been a year of preparation in some ways...although I don't necessarily know for what.  

I went to a birthday party yesterday for my Aunt Mary. A lot of people never realized that my mom was adopted into the family, years and years ago, and that she and my Aunt are actually step-sisters (mom's adopted dad married Mary's mom, Henrietta. Henrietta was the only Grandma I ever knew, and I miss her a great deal). Aunt Mary is so much like my Grandma; from her colorful personality, her constant joy, and her endless travels, she resembles Grandma as much in spirit as she does in body. Now, mind you, in my eyes, my Grandma was a saint. For me to say someone reminds me of Grandma is the highest compliment I can give, and in my lifetime, I've only said that about two people: Mom, and Aunt Mary. That should put it in perspective.

There were pictures everywhere from Mary's life, with her kids; we hadn't all got together in years, and I couldn't believe the changes in all of us; we all grew up! My cousin Jonathan had a full beard! AND KIDS!!!!! And I have kids! What happened to us?!?!?!?  Meanwhile, Aunt Mary pretty much looks the same, minus the beautiful, white hair.  It was wonderful, to see everyone gather and show love for such a wonderful person...such a beautiful story, and such a vibrant soul. I love my Aunt Mary and all of my cousins, and to all be together in one room just evoked the spirit of my Grandma in the very best way. It was pretty rad, truth (photo of Mary and the Grandkids from Cousin Judy!)

That being said, my Mama made an UH-MAZING cake, and she did it the only way she knows how: BIG. Four separate layer cakes, frosted and piped in homemade buttercream:

It was gorgeous, tasted awesome...and crashed to the floor.

Those top two tiers? The made-from-scratch carrot cake and the red velvet cake? Yeah--they crashed right where Mom is standing in this picture, shortly after Mary got to blow her candles out. The entire room gave a collective "OOOOOOOHHHH!;" I went running to clean up, and Mom? Mom just charged in, cut up the surviving cakes, kept smiling, and looked fabulous. No tears, no swearing, and no throwing of sharp objects.

I'm impressed, to say the least. 

When I say that I'm a natural-born Storyteller, things like this explain why: My mom used the experience of a destroyed cake to talk about how God makes messes into miracles. She used the experience to give Him glory, even in the middle of what could have been a total disaster. She was able to laugh, when anyone else would have fallen through the floor in embarrassment. She lived her faith, even in that small of a thing...this is the example that God gave me. This is what I have in my life, to point me toward Him.

How could I not have a story to tell?

We laughed through it; we have QUITE a memory of the party and of the day (so many laughs!); and we were definitely tired by the end of it all (except for my pickle-thieving toddler--he was wired. Cake.).  But more than that, I have a new point of reference for the year. My whole year kind of feels like a cake that crashed to the floor, in a lot of ways. It's been a really tough year for me, physically, but more than anything, spiritually, in ways I haven't really discussed. I feel like I've put so much effort into "life," but in a lot of ways, it's a bit of a smashed cake. 

We're gonna laugh about it, though. 

We're going to look at the bright spots: My son, and his ever-changing personality...his discoveries....the adventures of life with a toddler.  My husband, and the ways he's expanded into doing things he didn't realize he could do, both at home and on the job. My parents, and the ways they've been absolute rocks through the storm.

We're going to laugh about not only the "smashed cake" of the year; we're going to laugh at the work that went into it, and the love, and the heart...we're going to focus on the ties that bind us to each other on this journey, and we're going to embrace the good, the bad, and the hilariously broken.

We're going to tell the story together, of 2015, and we're going to love every page.

After all--we all know how it ends. He loves us....smashed cake, and all.

"Storyteller"
Morgan Harper Nichols

On a Sunday evening I'm looking back
Over all the years and where I've been.
Looking at old photographs, I'm remembering
You were right there and You have been ever since.
With every page that turns I see Your faithfulness.
The mountain where I climbed
The valley where I fell
You were there all along
That's the story I'll tell
You brought the pieces together
Made me this storyteller
Now I know it is well, it is well
That's the story I'll tell
There were some nights that felt like
They would last forever.
But You kept me breathing.
You were with me right then.
And all that You have done for me,
I could never hold it in.
So here's to me telling this story over and over again.
The mountain where I climbed
The valley where I fell
You were there all along
That's the story I'll tell
You brought the pieces together
Made me this storyteller
Now I know it is well, it is well
That's the story I'll tell
That's the story I'll tell
You hold the broken
You hear my every cry, every cry
My eyes are open
I know that it is well, it is well
[x2]
The mountain where I climbed
The valley where I fell
You were there all along
That's the story I'll tell
You brought the pieces together
Made me this storyteller
Now I know it is well, it is well
That's the story I'll tell
That's the story I'll tell
For years and years and years I'll tell
That's the story I'll tell

Find Me in the Waiting...

Find me in the waiting….              

So, here I am…waiting.

Lots of people are waiting for something right now. I have a friend who’s waiting for travel visas to China, so she can pick up the special-needs child her family is adopting. The process is agonizingly-slow, and she’s READY TO GO…The nervous anticipation she’s posting on Facebook is palpable. I find myself curling my toes and bouncing my knees when I read her posts, because I’m So. Darn. Impatient, on her behalf.

God moves on His own timetable.

Darn it.

So we wait….

My sister is waiting for something right now…a chapter to close. She knows it’s coming, but she doesn’t know when, and every week or so, I’ll text her and ask, “Do you have a date, yet?” We’re trying to plan out the holidays, but it’s nearly impossible, without definite information.

Time is dragging.

And so, we wait…..

I am waiting.

I am waiting to find out what the swelling in my neck means. I am waiting to find out why an ultrasound was needed…and then a CT scan, after the results from the ultrasound looked less-than-ideal.  Having your doctor call you and say, “We need you at the imaging center right away; how soon can you get there?” is scary…You gather your things, leave your office, make arrangements for your son, and you drive (mostly within the limits)…You get there, and the staff remembers you, and gives you “the look.”

You say, “Don’t feel sorry for me! Let’s get this over with!” and you call your pastor, because even if neither of you know what’s going on, there’s something beautiful in hearing him say, “Let’s pray.” It’s good to know people that mean it, when they say they’re praying.

I didn’t make the imaging center wait; I hauled myself there in record time…But they are making ME wait, and I know it’s not their fault…

But let’s get it over with.

Rip the damn band-aid off, and tell me what’s happening in this mutinous body of mine.

I am waiting.

I am praying.

And I know He’s there now, and He’s already there at the end, and He already knows the results, and He isn’t scared, at all…

This weekend, David & I had an extended date that was already planned. We had a friend who watched JD; David had done their family photos a few weeks ago, so they kindly agreed to take care of The Loinfruit. They love him so much, and I know he was happy to see them. We went to The Original SpringsHotel and Mineral Spa in Okawville, IL (highly recommended), and did a simple spa admission. The mineral baths are heavenly; there’s a dry sauna and a pool, and if you want to pay extra for a massage, they have wonderful massage therapists. We skipped that part, because I’m not a good candidate for massage right now.  The restaurant is AMAZING, and has the best fried chicken you’ve ever had (True Story!), so we stayed for lunch, and headed home…We laughed (a lot), and really didn’t talk too much about the Elephant in the Room.

We just hung out, two people that love each other fiercely, and who have been through so much worse…two people that couldn’t navigate this crazy life without one another holding on. He’s my soulmate, and I’d like to think that I’m his, as well. He’s my very best, dearest, most attractive friend, and he knows me better than anyone…We had fun, and as we drove back, I thought about our life together, and what an adventure we are always on…never a dull moment!

That evening, David did what was to me, the most important photo shoot he’s done since our children were born. He was asked to do an impromptu, informal photo shoot with a family where the patriarch is terminal. So far, I’ve been unable to look at the pictures, because from the two shots I’ve seen, the love this man has for his family, and they, for him, is so rich and so beautiful; my heart can’t handle it. This man loves Jesus, he’s raised a godly family that has had children of their own, and he knows where he’s going. That doesn’t make it easier to leave, or to say goodbye…Well, maybe it does, but it still hurts.

He doesn’t have an exact date, just a timeline…

So they wait.

They cling to each other; they make these the sweetest days…

And they wait.

My friend is waiting for travel passes and adoption papers…my sister is waiting for closure.  I am waiting for answers, and my other friend’s father is waiting for the end of the last chapter of a story he’s been writing for decades….

The waiting will break you, if you’re not grounded.

The waiting will take you to your knees…which is perhaps, the best place for all of us to be as we go through these processes. We find strength in ourselves, when we can answer our own questions. When we have definite dates, we begin the stress of preparation.

But in the waiting, everything is open-ended. Everything is up in the air, and we are on shaky ground…we are on rafts, in the middle of the rapids.

He is our Anchor.

Find Him in the waiting; cling to Him, and have stability in the ever-changing waters of uncertainty…

He is our Peace…He is our steady ground…

All of us that I mentioned in this post are waiting, praying, hoping, and seeking…and all of us know that He has His ways, and His timing…we all know He is not ignoring us, or pushing us away. Our Father loves His children.

So, we wait for Him to rescue us….even when that doesn’t look like what we think it should look like.

 https://www.youtube.com/watch?v=OVd7Hh5WCyc

Surviving the Meltdown...

My last blog post was pretty rough.
I don't want to call it "dramatic," as that would imply hyperbole...it was just very, very raw and real, and not fun to write or even to acknowledge. The bottom line was that as soon as I hit "post," I regretted it.
I will not take it down.
Someone on social media who was a so-called "Instagram Star" took all of her profiles down, because as she put it, she had glamorized this "real" life of lies. It's so, so easy to create an alternative world for ourselves on Facebook and Twitter, or in blogs...I think we're all guilty of it, to a certain extent.
I mean, who wants to be "that person" on Facebook that's always complaining?? The advice I was given, to always find a way to end things on a positive note was not advice to blatantly lie. It was advice to always find a way to glorify God, even in the worst of situations.
I didn't really do that in my last blog, but I'm actually not sorry about that. He's kinda far away right now, as much as I hate to admit it (although that doesn't make it okay for me to not give Him praise for all of the awesomeness He's done in my life). I am actually "aggravated" with Him.
I don't think Christians have to fake their relationship with God. I don't think we have to lie and act like it's all sunshine and roses, and that He's this gigantic ball of always-happy cotton candy. He sees us; He hears us, and He knows us, and He knows that what we're going through totally sucks sometimes (see previous blogs). He GETS us.
He understands that when I look at Him, and see that He has the power to stop a lot of really sucky things, but doesn't, it doesn't make sense, and it's aggravating, to say the least. He knows me, and He knows my heart; He knows that I'm not one to sit here and say, "why do bad things happen to good people?!?!" I know the answers to that, and I'm not one to be accusatory towards Him.
I know my place in the Grand Tapestry, and I know that He's not required to explain the Big Picture to me at any given time.
That doesn't mean it's not aggravating, that He doesn't.
Sometimes, I'm not much more mature than my two-year old.
He still loves me, anyways.
I definitely still love Him.
He's my Father, and I'm His Child, and I know that He still holds me through the pouting, through the rage, and through the storms, just as much as He holds me when the sun is shining and all is right in the world. I don't consider that to be "taking advantage" of Him; I consider that part of what He signed up for as a Father, and part of what I signed up for, as His daughter. He loves me. He doesn't change His mind, and He'd rather I pout and still call His Name, than to sit in sullenness and turn my back to Him....and even if I did that, He would still be there.
He Is.
I change--I'm moody, tempramental, and in my current state, I'm random forms of batshit crazy (I give that phrase way too much screentime). I'm messed up on medication and I'm stressed out, and I'm an ever-fluctuating mess of hormones.
He Is.
I am grateful to Him, for all of this, even for the lousy parts...I think my biggest aggravation comes from the lack of information I was given at the beginning of this process. They told me that getting the TRH figured out would be difficult; not one person explained to me the emotional/mental stress involved in this process. Not. ONE.
I feel like my life has been cut off at the ankles, and until we can get the "prosthetics" of TRH figured out, I'm just going to stumble around like a drunken idiot. For someone who has been through so many major fluctuations in life, and so many oceans of rough waters, I'm struggling with feeling like I want to yell, "Hey, Lord, haven't I been through ENOUGH?!?!?  C'MON, already!!!!!!!!!!!"
I know I'm not alone in that, and that I certainly am not the first or the last person to say that to Him.
I also know that there are no guarantees, and that the only way to get through this is to keep trusting Him...and to be smarter with my doctors.
One doctor wants to leave my Wellbutrin alone, and add something called Buspar to help with the anxiety [IT'S NOT A SPIRITUAL ISSUE, PEOPLE--it IS chemical, so please stop telling me I just need to pray more. Suck it! (I wish I had the courage to say that to people's face, sometimes...okay, perhaps that's a bad idea)]. Another doctor says I don't have to take the double-dose of the Armour Thyroid, since I'm not "tolerating it well" (I laughed at that phrase). Sooooo....since the Armour Thyroid is keeping the stupid cancer at bay, do we just forget increasing the dose, and roll the dice? Do we roll the dice with the anxiety meds, and keep trying new stuff until we get it right? I'm about DONE with all of this potion-process of guesswork.  I'm really not inclined to turn my biology into a giant cake mix of troubleshooting.
Frankly, I'd like to take ALL of the meds I'm on, and burn them...they tell me that's a bad idea.
David (my husband) keeps reminding me that this is just a season...that it WILL get better, and that we can get through this. God knows we've been through worse...I know he's right. We CAN do this. This WILL get figured out, and I will be as close-to-normal as I can be. We're going to beat this stupid process, and things will be alllllll-right (as my sister's macaw likes to say).
It's one day at-a-time.
I am grateful that at least I have open doors of communication with my doctor (even if I had to kick one of them down pretty hard).

(Side-note: If you have a husband, or kids, or parents, and you're dealing with a health issue, REMEMBER THAT IT DOESN'T JUST AFFECT YOU. Doctors are not just caring for YOU. They're caring for you, and you're important to your ENTIRE family. You need to stand up to them when you have questions, when you feel like something's not right, or when you need more information; if you can't do it for you, DO IT FOR YOUR FAMILY. Put on your grown-up pants and find your voice, because in the direction that healthcare is going in this country, YOU'D BETTER BE ABLE TO STAND YOUR GROUND. Doctors are important. They're smart, they're educated, and they're very much an integral part of society. SO ARE YOU. They aren't any better than you are; as my dad likes to remind me, "everybody poops."  So get it out of your head that they're calling the shots, because the way I see it? I WORK HARD FOR MY GOSH-DARN HEALTH INSURANCE. My health insurance takes my money that I work hard for, and pays my health care providers. MY DOCTORS WORK FOR ME, and by golly, my employees are going to engage in conversation with me!!!  I am PAYING FOR ANSWERS, darn it, and I WILL GET THEM....for me, for my husband, for my parents, AND FOR MY SON. That's worth being uncomfortable, and it's worth pursuing excellence in healthcare. #EndRant)

Now that that's out of my system...

 I've said all of that to say that I know we're going to be okay. We're only 5 (LONG) months into this process. It WILL get better--it has to. I know the promises of God, and I'm hanging on to them.  

It's gonna be okay. 

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.

The Perceived Suckiness of the Plans of God and Silencing the What-Ifs...

For years, October 30^th glared at me from the calendar.  Every day that approached was like another page turning in “The Monster at the End of This Book” (see THIS for more details—with pictures!).

This year, I’m not sure what’s different…Is it the pace of life? Is it the fact that physically, this year has left me feeling pretty spent (and marginally emotionally uninvested)? Is it the fact that I am finally, truly at peace with a clearer understanding that my daughter—who would be turning 9 this year—is, beyond the shadow of a doubt, with my Savior? 

I generally have my prayer time on my commute to work. I feel like I can have an unadulterated, uncensored, frighteningly-but-beautifully frank conversation with the Lord, free from pretense or interruption (with the glaring exception of the occasional eruption of road rage). This morning, we talked about Hannah…about the fact that my concrete beliefs that there is a Heaven, that Jesus is there, and that my daughter is with Him, are probably the only reason I have survived the loss of my firstborn. Without that knowledge, without knowing Him (in as broken of a way as I do), I would be lost. Even with that, there were days the despair was so heavy that I wanted to end it all. I will never, ever forget those days of darkness…there really is nothing like it. It’s like living in a state of suffocation…but not quite enough that you get the bliss of unconsciousness. It’s scary, because all you want is to be extinguished; however, your own faith keeps you from pulling the trigger yourself. You just pray that something else kills you (I can’t tell you how many times I prayed my heart would just explode). It’s the hardest thing a soul can go through…And we survived.

We made it (oh, the fear that goes into making that actual statement…there is no pride there, trust me. There is simply the acknowledgement and gratitude of the Spirit of God that kept us from self-destructing). I’m not sure how I didn’t off myself, or how David didn’t lock me up (or why he hasn’t as of today…I’m not ruling it out as a possibility at some point in my life, LOL), other than by the grace of God.  And how thankful am I, for that grace? If not for the grace of God…I wouldn’t be here. Jericho wouldn’t be here.

When I think of all of the joy that would be missing from the world, without that little boy…

God is good, y’all. He sustains us, even at our weakest, our most unlovable, our most vulnerable. He doesn’t walk away, even when we yell at Him in our anger. He doesn’t give up, even when we don’t want to breathe. He stays, even when we are unfaithful.

His ways are not our ways. His plans don’t make a lot of sense to us…and who are we, to think that they have to? I had a friend who recently said, “I’m sick of being told that God has a plan for all of this. If this is His plan, His plan SUCKS.”

After I took a few steps to the side, so as to avoid the proverbial lightning strike (God doesn’t really do that…I hope), I didn’t really say anything back to her. I just told her that I understood. It’s true…to us. Sometimes His plans just suck. Going into heart failure sucked.  It sucked, to lose my daughter. It sucked, when my husband lost his job. Those years of unemployment/underemployment? THEY SUCKED. Finding out I had cancer this summer? IT SUCKS. Do I think that God sits in Heaven, intentionally inflicting pain on His constituents? No…but I certainly think He uses it to draw us into Him. He takes these things…these results of living in a fallen world that hates His children…and He recognizes that they hurt. Jesus wept when His friend Lazarus died. He wept, even when He knew what was to come. He cried because it sucks when your friends die…even when You’re the Son of God. Jesus cried in the Garden of Gethsemane. Why? Because He knew what was to come…He knew it would hurt…He knew it would separate Him from His Father…and He knew it was gonna suck, BIG TIME. Sometimes, God’s plans just suck.

(It’s at this point that I recall how many times I got into trouble for saying something/someone totally sucked, in elementary-junior high-high school. Never really broke that habit.)

Even though things are arduous (fancy-talk for “sucky”), it’s only for a little while in the grand scheme of things. There is always, always, ALWAYS another side to the battle. There’s a break in the storm; even hurricanes eventually come to an end, although they seem insurmountable in the process. 

It WILL get better, because He is. HE IS.

We have that truth—the truth of The Great I Am. Sometimes, those two little words are all we can wrap ourselves around in the middle of the chaos…

I spent about an hour on the phone with my Mama the other day. She’s taught me a lot, and I feel like she’s lived a lot of life in a few years. I’m sure I’ve aged her a few decades on my own, although you’d never know it to look at her—she’s super snazzy!!!! I’d like to be more like her, when I grow up. We discussed the fact that this summer was pretty much a great big pile of poo. Seriously—getting cancer (albeit, “the good kind”) really trashed most of my plans. It took up all of my vacation time, rendered me unable to tend to my garden (big waste of $$), made me unable to really have too much fun (minus my concerts—those were a blast), and I am STILL dealing with trying to get my meds regulated. She took quite a bit of care of me and JD during that time; the emotional toll of being told mid-surgery that your child (even a grown-up child) has cancer is pretty great….even when it’s “the good kind” (that phrase!). If not for the ever-changing antics of JD (and my concerts), I’d like to forget most of this summer. So would my mother. She really took my diagnosis hard, and I think she still struggles with the aftermath. Every 6 months for the next 2 years, I will have tests; because of the high reoccurrence of this kind of cancer, I’ll probably have labs to monitor my thyroid levels for the rest of my life (also, to maintain the dosage of replacement medication that I have to take).  That’s a lot to ask of a person as a patient; I think it’s more to ask of that patient’s mother. My mom has held my hand through 10 of my 11 surgeries; it’s safe to say that this one was the hardest on her.  Cancer is a kind of chaos that requires clinging to “I Am.” Even the “good kind” of cancer wreaks havoc on a mother, when it’s her child. My mom really hit her knees through this process, and I know her prayers have been heard.

Mom and I talked about my fears and frustrations in our phone call. The change of seasons…grayer days…gloomy weather…the ever-approaching end of the month…It all affects me, emotionally and spiritually. I look for ways to escape; I find myself dealing with irrational fears. I don’t want to go anywhere; I just want my blanket and a fireplace screensaver on Netflix. I eat more, and I make bad choices. I’m more introspective and less social; I bake more, and channel my lack of adventure into a recipe book. The irrational fears are a problem. The “what ifs” go from a murmur in the back of my brain to a screaming chorus in my head that makes me paranoid about everything, and there is a daily battle to keep it in check. You could say that my natural crazy gets “turnt up,” and it’s a problem. Mom talked to me about prayer, and I said that I wondered if it’s the natural fear associated with Halloween that I’m subconsciously picking up on? She said it’s not…it’s this time of the year. She’s right.

Not having a birthday party to celebrate is a nagging constant in my brain and in my heart…I’d be lying if I didn’t admit that it hurts. This time of the year makes me more emotionally sensitive. I HAVE to disassociate; I have to unplug. I have to make myself stay off of Facebook for a few days; I have to stop reading the news (I think I need to do that, regardless of the time of the year). There are 29 days each fall where the clock is pounding in my head…where was I, what was I doing, what was Hannah doing? Only in the past 3 years has that improved, and that is honestly because having a toddler means that I don’t have time to climb down that rabbit hole. It’s an unfair pressure to say this about my son, but he has, in so many ways, pushed me to a different place of healing where Hannah is concerned. You simply, physically, cannot focus on the sadness and on what you missed, when there is a child that takes up most of your attention. Days become markers on the calendar, rather than the overwhelming emotional valleys. Life forces you to move through and walk forward, rather than stopping (notice I didn’t say “move on.” That’s another discussion).

That’s not to say there aren’t pauses, and that there aren’t moments where it hits…that there aren’t moments like this morning, where I wonder what would have been? What would she be like? I have no idea…

But I know what her brother is like.

And I suspect that had she made it…had she survived…he wouldn’t be here (we wouldn’t have tried again, because of the damage I sustained to my heart. I really don’t think David would have wanted to risk another pregnancy, and I think I would have been reluctant to, as well). God has a plan for that little boy that we have yet to have a clue toward…

I think the greatest way to celebrate Hannah’s birthday is to thank her…Having her, knowing what motherhood felt like, loving someone so strongly and having that blessing to hold in my arms, was the greatest gift I’ve ever been given outside of my salvation. She has an eternal impact on my life and on my soul, and I am grateful for the chance I had to hold her. My son is in no way, shape, or form, a replacement for her…but he IS a response to her. I knew that I knew that I KNEW that we were meant to be parents after Hannah died, and we pursued that dream until it became a reality…The reality known as Jericho.

What we have does not replace what was lost…and focusing on our present is the best way to honor the past.

So, on October 30^th, I’d like to say that the day will go on as mostly “normal:” David and I will both go to work; JD will go to daycare. We have a meeting scheduled that afternoon, and I may convince David to go out to dinner; otherwise, we will treat the day as any other. At the end of the day, though, I will get a candle out of our coat closet. It’s a Birthday Cake candle, made by a mother in Kentucky who lost her son. I light it one day a year, on Hannah’s birthday.  I will light that candle, and we will pause…we will hold our son a little tighter, and maybe keep the bedtime ritual a little more relaxed…We will kiss our boy, and we will be thankful for the love we have, for the grace of God, and for the beauty of knowing the peace of the Great I Am…We will marvel at the good, the bad, the sometimes-perceived “suckiness”, and the overall, misunderstood awesomeness of the plans of God….And we will cling to the verse that David chose as our wedding verse, because every year, it just becomes more and more clear that only He fully knows what He is doing; all we know is that we can rest in His plans because above all, He is a good God:

9. However, as it is written: “What no eye has seen, what no ear has heard, and what no human mind has conceived” the things God has prepared for those who love Him—I Cor. 2:9 (NIV)