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.:)

Radioactive Fall Out...

I think I’m just going to turn all of my blog titles into Fall Out Boy and Panic! At the Disco references, LOL.

Since my last blog post (6/2015), I’ve had my radiation treatment (AKA, “ablation”) and have started my thyroid replacement medication (TRT). I’ve also gone to my first secular concerts (I’m not counting Transiberian Orchestra and Pentatonix), messed up my meds and gone off the deep end, and kind of gotten back into a routine. It’s been an eventful 30 days.

On 6/4/15, the surgeon went in and removed my thyroid, and a lymph node. Sure, having your thyroid removed has some major consequences, but you still have some thyroid cells left in your system. Radiation annihilates whatever thyroid cells you have left, leaving you feeling like your arms and legs are made of lead. The radiation treatment is relatively simple—you take a pill. That’s it. You spend 3 days in total isolation, 7-10 days away from your child, and about 7 days sleeping separately from your spouse…5 days after you take the radioactive pill, you get to start your TRT. By day 4, I could barely walk to my car. I was working 4-hour days, and all-but-crawling to my car. The day before I started the TRT, I sat in my car and bawled like a baby in the parking lot of my job. I was pretty much at the end of my rope, crying out to God, and knowing I could not cope with being awake for the drive home. My little sister had a few days where she’d answer the phone, and talk to me about anything-and-everything to make sure I stayed awake for my 45-minute commute. She was a Godsend!

On my 5^th day, I took the little miracle pill known as TRT. By the next day, I was back to an 8-hour work day…but by Thursday, everything went downhill. Thursday, Friday, and Saturday were increasingly awful; by Saturday, instead of being happy to see my son after 10 days, I was annoyed by him; I told my mom I was “in Hell,” and I was devastated that the “little miracle pill” wasn’t going to work for me. I didn’t know what to do, and I was so angry. David caught the worst of it; I still can’t yell, so I whisper-screamed terrible things at him…He didn’t know what to do with me, either, and we were a mess….

But then Sunday came, with a frightening realization: My medications were messed up. Instead of taking my usual ½ Wellbutrin (anxiety med) and 1 Coreg (heart med), I was taking 1 ½ Wellbutrin, and no Coreg. THREE TIMES my normal dose of Wellbutrin? Small wonder that I lost my mind. When I corrected the dosages, things began to get better. Within 24 hours, the thyroid meds and my regular meds were working together, and things seemed much better (and continue to be so).

I’ve had my first body scan since my radioactive treatment; the results were not anything unexpected, and sound a little scarier than they are. Basically, the scan looks for all of the thyroid cancer cells that take in the radiation.  That determines how far the cancer has spread, and lets them know if they’re getting it all. My scan showed that the cancer has spread into more lymph nodes than they thought, but since the cells are taking in the radioactive isotopes, then they’re being treated, slowly-but surely. They will monitor my thyroglobulin and TST; as long as the thyroglobulin starts to go down, I’m in good shape. If it doesn’t go down, or if it starts to go up, then I’m looking at more radiation/surgery. I’m hoping to avoid both. I won’t have another scan until next year, and will have regular labs over the course of the next 2 years. Unfortunately, that means the “C” word is now a part of my vernacular. Frankly, I’d like to ditch it.

Other happenings since my last post: Our roof has a hole in it. There’s a tarp between us and total destruction. This freaks me out, and pesters me in the back of my brain like Chinese water torture (guess that’s not very PC). My husband’s car broke down, but it got fixed, so that’s good….and mice decided to invade our house, so I fought back with an electromagnetic ultrasound-thingy that seems to be working. All of that happened the week I had to do the radiation, so that was a BAD week in our house. :) We’ve only JUST had someone out to put a bid on the repairs, so I’m really, REALLY ready to have the stuff fixed. Ugh—being an adult/homeowner is hard, LOL. I’m all for selling the house and just renting. I’m over this grown-up-property-owner crap.

The biggest issues I’ve struggled with through this whole cancer-thing is anger—I think I’ve said that before. I’ve just been angry at the whole process…at having a bar-coded card I have to present at the doctor’s office, at the inconvenience of losing all of my vacation/sick leave to something so “unfun,;” at spending yet another summer dealing with doctors and surgeries, instead of getting to do what I WANT to do (the beach!!!!  I just want to go to the beach!!!!!!—stomps foot—BEACH!!!!), and it’s been hard to let that go. My friends are going to Vegas, and the Mediterranean, and England…RAWR. Yes, there are people that have it FAR worse (my own stepbrother had a terrible motorcycle accident—he’s in much worse shape right now), and I got “the best” cancer you can get. I am fully aware that I am a giant, monster-baby-big-fat-whine-bag, and I’m being a bit of a punk about it all, truly. I just wanted to take a frickin’ vacation, already, is that okay?!?!? Sheesh.

Anyways, all of my douchery aside, I am thankful. Dealing with no thyroid is NO JOKE, and the more I read, the more I realize that my thyroid probably crapped out a long time ago. Getting it out, and getting the right medication, is probably a blessing in disguise in some way (that I will figure out after I finally get to a beach somewhere). I’m grateful that my husband hasn’t flat-out bent me over his knee and busted my rear for being a brat. I’m grateful my parents were able to take care of my son for 7 straight days, and care for me 3 solid days. I’m grateful that I opted for insurance through my husband’s employer this year, because my employer’s benefits would not have made this process very cost-effective.

Thanks to my friend Hannah, who made me a wonderful balm, my incision is healing nicely. Do me a favor, though—don’t make comments about it the first thing you say when you see me. Truthfully, I’m pretty self-conscious about it. You’d understand if your throat got slashed.  I’m grateful for my friend Amy, who has made me get out and try new things; she took me to see Fall Out Boy and Panic! At the Disco at Riverport (Hollywood Casino Amphitheater) last week, and although I’m tired, it was so much fun. I feel like I knocked a few things off of my bucket list (that’s not a cancer reference; I firmly believe everyone should have a bucket list, and I need to make mine. And yes, THE BEACH is on it.).

So, there’s the update. Oh—everything tastes like burnt metal. That’s no fun. You think I’d just stop eating, and be skinny, right? Of course not, LOL. Someone gave me the tip to rinse with Orajel and water, which I have to try. Water, which I know I need the most, tastes THE WORST, so I’m thinking of developing a lemonade habit. That still tastes okay.   I finally drug my butt back into church yesterday, for a very self-conscious but pleasant visit. It was nice to be back, and nice to be in that environment again.  JD is potty-training like a rock star, and I’m hoping we’re done with it by the end of the summer, in spite of the hectic disruption of our summer-with-no-vacation (I just can’t get past it. BEACHBEACHBEACHOCEANBEACH!!!!!!!!!)  And there you have it. Every day seems a little more “normal,” and I’m excited by being able to make it through the grocery store without falling over. I feel like this has been more of a hill than a mountain, in the grand scheme of things, and my hope is that we don’t have to go through this again. Time will tell. Until then, and even then, it’s all in God’s hands. Good thing, because I have no idea what the heck I’m doing.

Thyroid Cancer and Panic! At the Parking Lot

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

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

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

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

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

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

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

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

Updates….

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

And that’s okay.

I officially give myself permission to write when I can.

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

Oh, how a few weeks can change things!

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

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

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

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

“I refuse to accept that.”

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

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

The next internal monologue went as follows:

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

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

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

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

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

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

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

Fast-forward a couple of weeks…

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

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

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

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

Great.

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

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

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

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

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

I really have to stop losing organs, people.

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

I

Am

Beyond

Exhausted.

It’s like, New Mom Tired x 1000%.

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

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

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

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

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

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

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

Here is how I respond:

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

Do you know what I know?

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

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

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

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

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

I’m happy.

I’m so happy.

I’m deliriously happy.

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

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

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

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

He loves me.

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