Showing posts with label endocrinologist. Show all posts
Showing posts with label endocrinologist. Show all posts

Monday, March 7, 2016

Updates, Labs, and 'Roid Rage...


Oh, those days where I know that I KNOW I'm running off at the mouth....I feel like those days should come with an automatic plunger for my face.

I totally feel sorry for this kid--you know that had to leave a mark!

That being said, last week, I got really sick...I made it through worship, but by the time it was done, I made it back home and went straight to bed UNTIL TUESDAY. I couldn't exactly pinpoint what was wrong; I've been feeling really run-down, my throat has hurt, and I was having such a heaviness in my chest that I kinda figured I had bronchitis, so I finally went to my Nurse Practitioner.
I've been under a lot of stress over the past few months (yeah, I guess cancer can do that). I've gained a lot of weight; my marriage is feeling "unsteady"; and my job has been busier than ever. Everything is weighing very heavily right now, and I feel like my walk with God is definitely suffering.
I've had NO energy, and I'm exhausted. The next friend of mine that puts their vacation pictures of a beach or a cruise ship on Facebook, I swear, I'm gonna barf. :)
All of that being said, it appears that I've simply caught a nasty virus, so they put me on Prednisone (a steroid) to ease the lung strain. Breathing--hey, it's important!
In the midst of that, my labs for February came back, and showed that nope, my thyroid meds STILL AREN'T REGULATED. Are you kidding me?!?!? IT'S BEEN 7 MONTHS!!!!!  COME ON, ALREADY!
Every time they mess with these meds, I gain weight, my anxiety levels go through the roof, and I pretty much feel like my brain is going to explode...It's incredibly difficult to function in this constant state of flux, and it wearies me, not to mention what it does to my family. I'm on my second endocrinologist, and I already feel like I want to knock the resident out. It's not him--it's me. It seems endocrinology is a branch of medicine that I hate. :) Unfortunately, it's something I'll have to deal with for the rest of my life...SO CAN WE GET THESE MEDS FIGURED OUT?!?!?
That being said, they've added Synthroid back in the mix (let's hope it's not enough to make my hair fall out again), plus the Armour Thyroid that I'm on...with all of this, I've decided to make the leap to a full does of the Wellbutrin (150mg) instead of the 75mg I was on.
So....steroids, new thyroid meds, and increased Wellbutrin.
I'm AMAZED at how much I can get done with this kind of energy, LOL. Of course, it also means I'm having difficulty sleeping....Once I'm off of the steroids, things should level out. I'll repeat labs toward the end of April (hey, I'm at 8-week intervals instead of 6-week intervals!), and at the end of July, we'll repeat my PET scan, most likely after a round of something called "Thyrogen," that I have yet to Google.
That being said, back to being sick: Emotionally, knowing that I have cancer in the lymph nodes of my neck is bothersome. Even though I know thyroid cancer is very slow-growing, non-aggressive, and non-life-threatening, being sick has made the nodes in my neck very swollen, which freaks me out...even though I know it's fine. After my next round of PET scans, depending on the node size, they're probably going to remove all of the lymph nodes in my neck. I need to take the time to educate myself on the consequences of that, but I haven't done research at this point, because I think it will be mentally burdensome. I feel like this virus-bug-thing is on it's way out; my nebulizer is a HUGE help, and I'm looking forward to some super-awesome weekend plans with my 3rd-grade bestie. :)
(That's a lot of commas...)
I'm hoping this med change will be the last for a while...I'm hoping I can learn to accept my body in this shape, and stop beating myself up for the weight I've gained (feeling bad just makes me eat more, I swear)...I'm hoping my marriage can catch a break where my health issues stop causing us so much stress, and stop affecting our communication/emotions/life in general....

The brightest spot of all has been, in a word, Jericho. He's funnier than ever; he's smart, he's bright, and yesterday, he learned his first Bible verse (Gen. 1:1). He's officially potty-trained (only took us 7 months), and he's brave. He announces himself when he walks into a room (sorry, Bread Co.), and he makes my heart explode in the best of ways...My husband is an amazing father to that little boy, and the two of them are bonding heavily over Legos right now (UGH. LEGOS.).
He knows his full name, his numbers, can count to 10 in Spanish, and is beginning to put his letters together to try to spell words (thank you, PBS!). We are beginning to discuss schools, and I'm trying to not be completely overwhelmed at the choices in education...(yeah, right!)...Praying for wisdom is an hourly thing in parenthood!!

The steroids I've been on have made me chatty and slightly-more unfiltered than normal, so my apologies if this is a TMI post...The truth is, I've been very sad lately...Up until this weekend, I'd say it's been since before Christmas that I can remember feeling "right," and it's been....well, sad. Nothing seems right, and I've felt like my joy got sucked out. All of the meds are now adjusted; I've always felt like when things are off chemically, it affects every facet, from the spiritual to the physical to the spiritual. I'm not really feeling like myself just yet, and probably won't until I'm off of the steroids; once the course is done, I think we may have our med combo figured out.

If this blog feels like it just goes in one big, static-ish circle, you're right--it's a rambly mess.
But that's kind of my life right now.
It's more good than bad, but it's a disorganized basket that's taking much longer than I have the patience for, to sort out...
Thank God He has some sort of a plan...knowing that, having faith in His abilities to make this ball of yarn into some kind of a tapestry, is a driving force for me. My life makes no sense...the things we've been through, as a family? In our marriage? None of it makes sense.
Jesus makes sense.
So, in this mess, I trust Him, and I discipline myself to find the joy in the best AND in the worst (and believe me, we've been through worse). These are not our darkest days, by ANY means...they're just frustrating days, but we're moving forward.
We keep walking, together, knowing that He will work all of this out for good, because we love Him. 



Wednesday, June 17, 2015

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 29th, 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.

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