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…

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)

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.:)