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.