The Furies

Abused, disappointed,

Raging, I come--oh, shall come!---

And drip from my heart

A hurt on your soil, a contagion,

A culture, a canker:

Leafless and childless Revenge.

                                                                               -Aeschylus, from The Eumenides


Today was a rough day.  Well, it really was yesterday, but I was moving too fast to see it.  I started the morning at the endocrinologist, where I received great news. Based on my January lab results and my scan, I was now moving on to appointments every six months! I told him I was feeling a little better as far as thyroid symptoms, but things were still off.  He said my TSH was over-surpressed by my old doctor (to 0.03!!!).  He said there was good news in this. "Yeah?" I perked up and looked at him.

"Now you know what being on cocaine is like..."

I like that he sees the bright side in everything.  Honestly, he told me that pending my blood results, he's excited to see I'm coming along. He ordered more TSH levels to see that I moved appropriately to a level of 1-2.5 (should be to about 2 by now). He also rechecked my parathyroid hormone and my calcium levels. He was trying to figure out what was contributing to the pain in my leg and other bones throughout my body, as well as all of these odd things.

I stopped to get my blood drawn, made small talk with the phlebotomist, and headed back to Tullahoma for another appointment.  By then I was exhausted from the driving, waiting, and talking about important things, but I tried to perk up. This was my therapist, after all, and I knew that it could get ugly if I walked into the room in a bad mood.

I would say the appointment went well. I was still feeling good from being told that my appointments were being stretched out, and I felt that for the first time in a while, I was able to get a handle on things. For anyone that thinks it is a picnic to be home and recovering, I'd like to paint a different picture for you:

There are some days where I have to muster all of my energy just to get the kids to school and remember what they need. It will exhaust me to take a shower, and the bone pain of standing, walking around the house, or heaven-forbid taking a walk outside can be enough to bring me to tears. On the days/weeks when I have all of the energy in the world, I get things done at record speed. I have all of these exciting plans, and I am active in everything. The problem is I can't really feel pain during that time, so I tend to overdo or injure myself, and not even notice until I resume my normal level. It's confusing, but I'll sum it up as saying it can be hellish.  I wouldn't wish it on my worst enemy.

But I was excited that day, because as I left my therapist and headed home, I'd be picking up Carly and babysitting my niece and nephew! They were in town from Washington, and I'd be watching them while my sister-in-law got her hair done. I was admittedly tired at that point, but I knew seeing their smiling faces would make it all go away.

Right before they arrived at the house, I got a phone call. I knew it was from my doctor's office, but I wasn't too surprised. They are awesome, and tend to call me to fill me in as they get lab results.  This time, though, the nurse's voice seemed a little more concerned than usual.

"Hey, Michelle, how are you feeling?"

I told her I was fine, and getting ready to fill the house with tons of little ones.  She wasn't up for small-talk.

"Well, Dr. Kistka wanted me to call you because we got your TSH levels back. Your TSH is STILL under the reference level, which is pretty abnormal. You are taking 112mcg of Synthroid, and your TSH is still at 0.45,  It should have been at 2 by now."

I didn't really know what to tell her. I had seemed to get a crash-course education in thyroids over the past year, but I didn't know anything about the other glands and what they did.  So, I just waited for her to resume talking.

"Dr. Kistka is worried about pituitary dysfunction."

At that point, I did interject, asking her what that even meant. I knew where the pituitary gland was (in the brain), but didn't know what this had to do with a person with thyroid cancer.

"Well, your PTH levels have been abnormally high for months, and your calcium isn't regulating. We don't think this has to do with your surgery, but may have just revved it up a bit. Your pituitary is in charge of all of that, and when something throws it off, it can make your whole body a mess."

Another question from me, "well, what threw it off?" I didn't have a lot of time for small talk; I had company walking through the door in a few moments.

"A tumor."

GREAT.... I hadn't heard that word in a while. I don't think it's a word you get used to hearing.

Now, keep in mind that a tumor on the pituitary gland can be tiny and still wreak havoc. All it takes is a small growth producing hormones and pressing on important things. I suddenly thought of the visual problems, the tremors, the abnormal heartbeats, all of the calcium issues and those side effects. This all might make sense, but it still wasn't what I wanted to hear.

She told me I was lowering my med dose again, and I thought to myself "this was almost the dose I was on when I actually had a thyroid??? What's going on with me?"  I thanked her for her help, and she told me she'd call me when they got the other results back.

Shortly after that call, the company did arrive. They served as a pleasant distraction, and I was able to put everything out of my mind for the evening. When my head hit the pillow last night, I was OUT. No room for thinking about the past or future.

The Furies hit this morning. I got up to take the kids to school, and then drove to run and errand. My mind began thinking about this path over the past few years, and all that has happened. Did the brain injury cause the growth in the brain? Did the endocrinologist miss the parathyroid adenoma? That scan was only 50% successful in finding tumors? The old endocrinologist seemed quite incompetent, so it seemed my natural reaction to be doubtful.  Were the visual problems caused by all of these things? That doctor was audibly gossiping about each patient in the hallway, and he even cast his negative opinion on me.

I didn't want to dwell on the past, and I don't like to be negative. Still, I wanted to round up all these doctors and scream, "WHY COULDN'T YOU HELP ME? WHY HAVE I LIVED THESE PAST FEW YEARS WITH MORE QUESTIONS THAN ANSWERS? AND MORE PAIN THAN COMFORT???"

I imagine this to be a bit of serendipity, or divine intervention. I had thought about The Furies, from Greek tragedies. They were females with one thing in mind: revenge. They would find those that had wronged people (criminals in their minds), and drive them to their own suicides through extreme despair.

I would like to interject here that I am NOT advocating suicide or revenge of this sort, only that I had remembered The Furies, after I mentally lined up all of those health professionals that had wronged me.

So I sat at home this evening, lying on my heating pad and hoping to finish a book before tomorrow. It's called "The Body Broken," and it's an absolutely lovely book. For anyone that wants to know what my life is like, or what the life of a friend or family member might be like that lives with chronic disabling pain, then this is the book to read. It's fantastically written, and it's like I am reading into a mirror.

So, I chuckled aloud when I came across the passage on The Furies. She had that "break" too! She had a moment when anger took over, and when she realized just how much comfort and time these people had stolen from her.

This moment was interesting for me (on what I felt today, and also what I read). You see, I never wanted to be vengeful; I always insisted on keeping a positive attitude.  In the wake of a student attack, people marveled at my positive outlook. When I took 37 pills JUST TO EXIST after that attack, I just thanked God that I survived. When I looked back at the crap I endured with my marriage, I said "I am just thankful, I got out, and that I can move on!" And when I got cancer, I was quick to say "thank goodness it's just thyroid cancer!"  Seriously, was my head in the clouds?

The people around me cheered on my bright attitude, but they must have known that it doesn't last forever.  Or maybe I fooled them; I did a pretty good job of fooling myself for a while.

But there's something that happens when it's a struggle to move your body off a heating pad without tears. This same body that ran miles and carried babies and loved yoga. And for a person that people joked would "get more done before 9am than most people did all day!" I was having a problem with taking a shower without losing strength some days.

My physiatrist gave me a thoughtful look when I "almost" cracked one day. I told her how hard this has been, and how I'm tired of not having all of the answers.  She told me it seems I do have a lot of answers, they just aren't cures. Unfortunately some of this won't go away for the rest of my life. The key is learning to manage it.

Yes, that's very insightful, but she needs to follow me home and see how pathetic I can be. I suck it up and give a brave face for most people around me, but inside I am dying to survive some days. I am not trying to throw a pity party, but I guess this is the first day I've really felt that first spark of vengeance, and of the feeling that I've been wronged. I feel like they've stolen time from me, with all of these wrong assessments.

Part of the problem is that doctors have ego issues. I think they all do, when they get into a job of playing a God of sorts. When they don't see the answer quickly, they do this thing where they casually imply that the patient might be overly stressed and her mind is creating things. I wasn't dumb, so I picked up on these comments. Then the next appointment, they wanted to screen me for depression. How many times did this go awry?

I complained of swallowing problems, and people thought I was stressed. I had thyroid cancer instead.

I complained of having foot pain, and continued to wait tables for a few days. They said maybe overworked? After the x-rays, they saw I had broken several bones in the foot.

I went to the hospital with TIA's, and was told all of the things to look for next time. The neurologist questioned me on stress and depression, wanting to blame all of my symptoms on that. Instead, it was a clotting disorder and very abnormally-thick blood causing the TIAs. Go figure...

So I wasn't a fan of hearing that same stuff. I know that after pain and illness for this many years, there's no doubt some emotional help I could receive. I was already getting it, and the therapist was telling me to trust my instincts.

I guess instead of being one of the furies, I have become more of a woman that feels she has to scream to be heard. I don't want to hurt anyone else, or cause them despair.  I just want them to listen, and believe me to be a competent woman with a decent head on her shoulders.  Trust me, I WANT to be out there laughing and playing with my kids.  And on the many days that I do push myself way too far, I don't want to be miserable for days afterward.  I try to keep positive, but I guess these setbacks always make it hard for me to handle.

And when the word "tumor" pops up, that word can bring me to my knees.

Almost Three Weeks

I guess I wrote the title out of exasperation...

It's been almost three weeks since my surgery, and since my life has been turned upside-down.  I was told it would be 7-14 days before I felt like returning to work, but that was before they uncovered the cancer diagnosis, and started me on all this other plan.

From the surgery, I can say that my scar has healed VERY nicely! This picture was taken this past Sunday, which was 17 days post-surgery.

Calcium Update: It seems that my body just doesn't want to get normal with the calcium! I have had the hardest time regulating it. We've had it go up, then shoot back down twice. That was even while I was INCREASING the amount of calcium supplements. I hope I have some relief soon- the twitching and muscle cramps are wearing me out.

The thyroid hormones were stopped yesterday, and I am really hoping that the yucky feeling I was having today wasn't my hormones already giving me trouble. I was supposed to get at least a few days of calm before the storm. I try to relax and realize that everyone is different, but the general consensus is that this will be a ROUGH period. I will be extremely tired, I will have muscle and body aches, I will be foggy and forgetful, and I will probably be moody. I hate it, because I know that I don't deserve to be tired and miserable, and the people around me don't deserve to hear me gripe. In a perfect world, I would be able to disappear for part of the time to stay out of people's hair. In the next few weeks, if you encounter me, consider giving me a hug or doing something nice like that. Chances are, I'll need it.

Work: I love my job, and I usually like the end of the year. This is the chance to do some fun things with the kids, and work on things for next year. I feel bad that the students won't get me at my best. I am grateful that I will be there to see everything at the end of the year, but I also feel bad that their last days of seeing me will be when I feel like death. I will try my best to keep a perky demeanor with them. We will see how that works...

I guess over the past few days, I have tried my best not to really think about things. It's been tiring to deal with everything, and I permitted myself a break from it all. In fact, while I was riding in the car with Robin to a dinner, I finally started talking about this whole ordeal again. I don't want to rehash things every day, but it does take time to process. I was grateful to her for talking with me--there are moments that hit me when I least expect it. I am hoping this feeling is normal. During these times, I feel this sudden dread that all of this stuff is happening whether I like it or not, and I feel absolutely and utterly helpless. There are no other words to describe the feeling that I am racing toward a wall, and there's no way to put on the brakes.  I know in the end it all works out, but I also don't know what "works out" means in this situation. 

I think I had mentioned this before, but I had the kids' photos made for their "birthday" time of year. We had my niece and nephew in town, and it was a good chance to get photos of all of them together. This was about two weeks before the surgery.  The sad thing is in the madness of getting four children to look at the camera, I missed the opportunity to get a photo of just me and the kids. I remember coming home from the hospital, a few days after the surgery and everything, and sobbing in the shower. I came to the realization that I missed having a photo with the kids--a photo now will have my scar. And then I also had a brief flirtation with the idea of "what if something happened to me, and the kids didn't have a good picture with me?"  That's not a great thought to have in the shower. Or ever.

Here's a shot of my beautiful children (taken by their Aunt Jessi):




So, in the next few weeks, I am going to try to get some good photos of me with the kids. Though I missed the opportunity to get GOOD photos of me and the kids, I can get a bunch of snapshots to fill that void. 

And now, because my body cannot keep up any longer, I am going to bed EARLY.  I will update more tomorrow, once I find out what's happening with my calcium levels. Wish me luck!

I Finally Write...

     It's seems like I've been in a fog the past few days. Honestly, I just turned on my computer and went back to work today... The past week seems like it happened in slow-motion, then rewind, then slowwww again.  Here's the best I can remember:

     On Thursday morning, I woke up and seemed ready to get this surgery over with! We dropped the kids off to school, and I drove us to the hospital to check in.  I didn't have to be to the hospital until 10am, which meant surgery wasn't starting until later.  We seemed pretty relaxed the entire time, and I was just ready to put all of this behind me.  I knew I would have a few days of discomfort, then I would be back to my old crazy self--encountering new adventures and telling stories to my friends.

     I remember coming out of surgery feeling a little strange.  I wasn't sure how long I'd been in there, and I vaguely remember falling asleep. Usually, it's a pretty relaxed experience (and it's sad it's happened so many times for me!). The strange thing about this time is they strapped an oxygen mask to my face, and I remember having a panicky feeling, thinking "something is NOT right!" Then I was out... So, coming out of surgery, I expected to feel miserable.  Quite the contrary--I felt very chatty, and seemed to tell the nurse my entire life story.  She was incredibly empathetic, and listened to all my jabbering. Actually, I seemed coherent, and it was the last case before she could go home, so she might have actually enjoyed herself.  I was given a little extra pain medicine, she wished me well, and deposited me at my room for the night.

     I was supposed to stay overnight to make sure my body could regulate calcium.  Sometimes the parathyroid glands get damaged during surgery, and the calcium levels go haywire. This can cause all sorts of problems with muscles and the heart, and they watch to make sure nothing happens.

     Well, the next morning it seemed like I was only going on a few hours of sleep. I figured the doctor would come by to discharge me, and then I could go home and sleep for the next few days. Then I would be back to work, and life would be back to NORMAL.  The food services lady brought my breakfast tray, and I began eating.  Shortly after eating my pancake, the doctor walked in.

    He was a normally-chipper man, and he looked like he was making a real effort to be happy. I figured he was mad he had to come to the hospital (I was his only hospital case that day), or something else was happening. He asked me about symptoms, and checked my incision. It was when I asked about what he saw... I don't think for as long as I live I will forget the look on his face.

     He backed up a few steps, and immediately started to fidget with my hospital blanket.  I remember feeling an almost out-of-body experience as I watched him and wondered how many times he had to tell people bad things. I was trying to absorb what he was saying, and also think about what on earth he was saying, and why he was being fidgety all at the same time. I have to wonder what my face looked like at that moment. It must not have looked good, because for a moment he looked like he might cry.

     He quickly told me I had two children already, so I'd probably want to opt for the radioactive iodine. That made me snap out of it. What was he talking about? I guess I hadn't fully digested the fact that the thyroid was out, let alone that I had cancer, or that I would be arranging treatment.  I had to be honest, I really didn't know much about cancer, outside of the bits I read when people become diagnosed. I know things are so specific to different types, and it's not like I troll around morbid sites looking for cancer research.  So, honestly, I had no idea what he was talking about.  I could tell he understood that facial expression, because he paused, and said we could talk about all this once the pathology lab came back from the other half of the thyroid (I was diagnosed based on a 4cm papillary mass visually found on the left side- results are still out on the rest).

   He then walked up to me and started tapping my face. My eyes started shuttering violently, and I realized I wasn't feeling well. He got quite an alarmed look on his face, while telling me that my calcium levels were dipping. This was causing the leg pains and restlessness (that I thought was anesthesia wearing off), and the scary actions of my muscles. He asked me if my face was numb- a bit, but I couldn't tell if that was my regular Topamax.

     The staff jumped to action, starting me on calcium supplements via IV and orally.  I didn't have much of an appetite, but I was trying to consume anything that had calcium. I was also taking Calciotrol, which is supposed to aid in the absorption of calcium. We were doing everything we could from keeping the numbers down.  I desperately wanted out of the hospital- I hadn't seen the kids in a while, I had received a diagnosis of cancer, and I was now feeling anxious and miserable. From Friday to Saturday, those were NOT good hours in my life.

     On Saturday, the push was to get the calcium stable so I could get out of the hospital. Thankfully, at the 3pm draw, I was stable, and we were able to leave!! We packed up quickly, and headed home as soon as possible. I had become so fixated on dealing with the calcium issues, I didn't have to think about much else. Until I got home...

     Then I started having a few moments of calm. Moments of quiet are dangerous, because I think. And when I think, I think too much... Well, over the past two days, it seems like all I've done is gone through a fog. Every time I try to think, my brain shuts me down- I end up in a trance-like state. I think this is to protect myself from worrying about things that might never happen. I also think for the first few days, I had to get all the calcium normal before I could deal with life. Today was the first day that fog lifted, and I could start dealing.

     Today I went to get my calcium levels checked again, and I have to travel to the hospital again on Wednesday afternoon to get them checked. This is unfortunate, because on top of recovering, I have to balance. I also return to work tomorrow (I am out of sick days!), so I don't have a choice but to embrace this hectic lifestyle. I am wondering if this will keep me from thinking about all sorts of yucky thoughts.

     Today I was sitting in the hospital, waiting for my blood to be drawn. Montel Williams was on the Rachael Ray show, and he was talking about how he survives with multiple sclerosis. They had just shown a picture of him snowboarding, so my ears perked up when I thought about what words of wisdom he might have for me.

    He said to get out there, to read EVERYTHING I could, and be the best advocate for myself that I could. I need to get an idea of all the options that are out there, of all the treatments, all the outcomes, and all the paths of life I might take. This will let me deal with everything, and will let me be active in my care.

    The bald man makes a lot of sense... But that means I will have to finally sit still, think for a little bit, write down my long list of questions for my doctors, and research all I can. I want to make sure I make decisions that will give me the best outcome, and leave me here to ponder life for many years to come. That means doing some homework now. And thinking a little extra about all of this--I will have to lift my own fog.

    I remember on Friday, looking across the room at my journal. I remember just getting the diagnosis of cancer, and remembering that for a person that writes about everything, that I should really write about how I felt at that moment. I was worried it would go away. I got up, made my way across the room to get the journal, and by the time I got back to my bed with a pen, I fell asleep.  Un-thankfully, the memory of hearing those words never leaves, and I don't feel like I missed my moment.  I am not saying I am having a pity party or have lost hope from the beginning- just saying it is an experience I will never forget. So thankfully, I didn't miss the moment of putting pen to paper. :-)

     And in the coming days, I will be focusing on recovering slowly, being present in the moment, and trying not to take myself too seriously. And researching to become my best advocate for Friday. :-)

Night Before the Knife

     Tomorrow will be my thyroidectomy, and I guess the idea of being sliced open has me a little sentimental.  I guess anytime I am under the knife, I want to make sure my affairs are in order...

     In order to understand my thoughts and anxieties of tonight, I kinda need to retrace the events of the past week.

     Last Tuesday, I was sitting in a meeting, ready to finish my day. I remember walking into the meeting feeling rough. It seemed that everyone had already gotten sick, and I thought that maybe I had a touch of something.  By the end of the meeting, I felt like DEATH. I couldn't turn my head, I had an intense headache, and I was burning up.  I couldn't tell if the meeting room was too warm, or if a fever was brewing.  I told a coworker what was going on, and she told me I needed to go see a doctor.  I got in the car, and headed for the doctor instead of going to class that night.

     When I got to the doctor, they took one look at me and thought I had meningitis.  They sent me to the ER to be tested for it.  Of course, I already knew the test for meningitis: lumbar puncture.  And, unfortunately, I had already had that test before.  So, I was terrified because I had been there and experienced the pain.

     It worked on the SECOND full attempt.  Yes, after digging around the first time, they had to go get someone else from the anesthesia department to complete the puncture. I remember breathing eerily slow, with tears streaming down my face. I knew what the needle looked like, and I knew where it was. I knew that one renegade breath could paralyze me.  And with my history in a wheelchair, I didn't want to chance any issues with my legs.  It was definitely not the best 20 minutes of my life.  Add to that a headache that wouldn't quit (even after two shots of demerol, and add-on percocet), and I was a miserable mess.

     I was also concerned that I had either given this to Travis, or got it from him.  I had alerted him of this on the way over to the hospital.

     They told me I would be staying in the hospital for at least 24 hours, and they were going to start the treatment for meningitis while waiting for the test results.  They moved me up to the isolation room, and I settled in for the night.  I remember being ready for sleep, but being in such an uncomfortable bed.  I remember being thankful that I would be recovering from whatever this was, and that at least I had a supportive family, friends, and a pretty good life.

     Nausea and a headache continued through the night, but as long as I ate crackers and drank sprite, I seemed fine.  I didn't feel miserable, but I certainly didn't feel well. I just wanted to go home, so I could get back to spinning all of my plates in the air.

     Well, on Wednesday, it seemed like I waited ALL day to see the doctor.  In fact, I did. The doctor wandered into my room around 7pm and asked me if I wanted to go home. The best he could guess was that my body overreacted to a virus.  I told him I would rather recuperate in my own bed, so we were headed home.  I was thankful to get to see my children and to have my life back again.  I packed up my belongings, and mom drove me home.

     I got home, hugged my children, and headed upstairs. I sent a message to Travis, asking how his evening was going, and life in general.  Then I got the news:

     He decided that it wasn't working.  And apparently the best time to decide this is when the significant other is in the hospital.  That does seem rather convenient.

     Ok, I am not being fair.  I will back-track a moment to a week before.  We had been on a date, and he shared a story of a past girlfriend, and some issues she had.  Because he had shared the story, I decided to share a story of my long-ago past. It was 16 years before, and really had nothing to do with my current life.  Some people can hear stories about people, and respect all they have been through.  Other people hear stories, and probably think about all the ways it might affect THEM. Again, it seems that I find a lot of men that really just worry about themselves.

     And to kinda confirm my thoughts of this event, I heard a character on tv say these words the other day:  "Scars tell us where we have been. They don't have to dictate where we will go."  This is the mindset I have always had, and that experience always shapes our future.  It doesn't follow us to constantly make decisions for us--we are ultimately accountable for our growth and development.  For some people that either can't think that deeply, or are terrified of having to care for someone, I guess this is too much.

     So, on the night of my discharge from the hospital, I also had another plate come crashing down. I was single again.

     I decided I was going to enjoy my kids and take a break from a lot of things. I also decided that since I had surgery coming up, and I had suddenly gotten really TIRED, I was going to be withdrawing from classes. I would rather focus on my self, my family, and my job. Everything else can wait until later.  So, for the next few days, I took some extra-deep breaths, appreciated how great I really was, and really, really, really appreciated the friends I have.

     Tomorrow, I will be put to sleep while they remove my thyroid.  Hopefully, while they do this surgery, they won't a) release any abnormal or cancerous cells into my body, or b) damage my vocal nerves.  Those are really my only concerns.  But those are pretty hefty concerns.  Let's face it:  my job is all about talking, and I need to be able to talk to perform my daily duties. I also have a stellar karaoke career...  And I am a bit worried that things aren't right with my thyroid- there's always the chance, and I would hate to think that my adventures would be cut short.

     I would say for the past week, I have been through too much.  I would also say that I am redefining with whom I need to spend my time. I was talking with my friend Robin about this very issue. She told me about her awesome Aunt Imagene.  She's 87 years-old, and does whatever she wants. She pretty much decided she wasn't going to take care of a man, so she lives her life to the fullest, and enjoys being around men. She just isn't a slave to worrying if a man is going to stick around to be MAN enough.  Imagene didn't take any crap, and I don't think I will either.  She also apparently had some great chandeliers, which I am looking to purchase sometime soon.  Honestly, the idea of living my life to explore the world and make my own decisions sounds intriguing.  I already have kids, and I love them. I can raise them and enjoy that, and when they leave the nest, I can leave mine.

     Or, I can re-prioritize when I come out of this surgery, and realize that someone man enough will come along.  And I can still explore the world. And I will definitely be getting tacky chandeliers, as a heads-up to whatever man is looking at heading my way... ;-)