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.

In the End

It's not that I haven't wanted to write; it just seems that I have spent a lot of time doing other things lately.  While talking with my friend Robin today, I realized that I had committed to a plan two years ago on this date (that's how the project of 15 Before 30 got started).  So, no matter how sleepy I am from travel, it's time to start writing...

I wrote this list of things to do before I turned 40, because I knew they would take a while, and I knew there was significance for each item to play a major part in my life. My 30's are a time of settling down, of reaching goals, and also of exploring and appreciating the world around me. I have always wanted to live a life of balance, but I feel more than ever that I need to find this balance in my life.

In the middle of December, I started feeling strange. I just felt TIRED all the time (I still do, really). I went to have a scan done by my dr (long story, but he was convinced I had another tumor), and they tried for almost an hour to complete the test. For some reason, my body was clotting the blood on contact, making the injection nearly impossible.  When they went to change the needle, they pulled massive clots out. I thought I was dying, and wondered what on earth was happening to me.

So, I headed to my primary doctor and talked with her. She agreed to run blood work, and checked me over. I told her I was by no means depressed, but I felt VERY exhausted at this point. She said we'd find out the results the next day.  I went home, and promptly went to bed.

I woke up the next morning, and I'll never forget the feeling. It was like my brain had no connection with my body. I had to go to the bathroom, but my brain wouldn't tell my body to get up and go. I felt spacey (what I imagine being stoned is like), and my face was tingly. I had a headache that hadn't gone away for a week at that point, so that was also nagging at me. When I went to speak to my son, I realized my speech was really slow.

I did what any logical level-headed person does when feeling this bad: I called the guy I've been dating (at work), and cried to him. Yeah, that was pretty uncharacteristic of me, so I'm guessing I felt BAD.  I decided to go to the doctor and get looked at.  My mother came home from work and drove me, because a shower almost did me in. When I arrived, the doctor took one look at me and sent me to the hospital. She noted that my left pupil wasn't dilating like it should, and my face numbness and weakness was concerning her. She was afraid I was having a stroke, and wanted imaging IMMEDIATELY.

Well, insurance can be a pain. I was sent for CT and CT-A scans, but insurance said they wanted four hours to review my file. I could be dead at that point, so my doctor told me to travel to Murfreesboro and go to the ER. That way, they could run the tests in less time, and potentially save my life.  So, we took the trek up there, and sat for the evening.

I can say nothing but good things about the hospital in Murfreesboro.  As soon as I came in, they already knew my situation (my doc had called ahead). I was processed quickly, and was hooked up to an EKG and had blood work within 10 minutes of arriving. They were really working hard to assess me quickly, and even had meds for pain and nausea within a pretty quick time. I started to feel better once I was there, but was still incredibly tired. I was also concerned about flying at this point (I would fly cross-country two days later).

I was told that what I had was a Transient Ischemic Attack (TIA), and it is otherwise referred to as a mini-stroke. Pretty much, blood flow was interrupted temporarily to the brain, which gave me all of those effects. I was put on aspirin to thin my blood, and told to rest, relax, and drink plenty of fluids. I was also told to see a neurologist SOON.  There's a pretty decent risk of impending stroke if I do nothing, so that was a good wake-up call to evaluate life, and realize that I had a lot of control over the stress I was letting in my world.

So, as I sit here today, I am thinking about what it will take it get my life into balance. I take on too much stress of the life around me, and I know it will kill me. I've always been a kind, compassionate and hard-working person, and those traits can do a lot of harm if they aren't cultivated in the right setting.

I want to go back to school. I know I am already in the program, but I had to stop when the cancer arrived. I want to get back to learning about what I really enjoy, and finding a way to help people around me.

I want to look at how my skills can be matched with the world around me to leave me fulfilled.  I know I am thirty-one and saying this, but I guess it's better than waking up miserable when I am 40 or 50.  I know that I don't have to be happy every minute of my life, but I also know that I need to feel content, and I don't need to go on nerve pills just to exist.

I am enjoying the relationships and friendships around me, and I'd like to take time to cultivate those. I really love that I have three good female friends that I can lean on, and I enjoy a relaxed relationship with Jason. I like where I am at during this time, but I'd like to make sure I can keep these things going. I know that takes work and attention, but it's worth the time and effort for the great results.

I also need to complete a task off of my list. I was sitting here today, thinking about all of the projects, and about my life in general. It's been a pretty rocky 2013 for me, and I can't wait to push it out and welcome 2014.  I decided my first project to be completed soon will be going to see the Before I Die Wall in New Orleans. I had come across this place and the idea of the trip in 2011, and have tabled the idea for two years. It's time for the project to continue, and I honestly can't think of a better place to go to get inspiration for how to live a life of balance, and to appreciate each moment. Once our travel plans are complete, I'll let you know the plan! :-)

I'll be spending a low-key New Year's Eve with someone special, so I won't be making a post before the end of the year. But I will be thinking about this project, and about making these changes in my life. If 2013 was the year of catastrophe, then 2014 can be the year of metamorphosis. Carly asked if humans go through metamorphosis like butterflies, and my response was "most definitely!" My explanation was a bit over her head, but I appreciated getting to tell my daughter that amazing things happen when the body goes through stresses and traumas to grow. We all change and evolve, and it's amazing to see how those past transgressions shape our current beings. 2014 will be a year of spreading my wings.

Making Changes

Everyone makes goals, and some people accomplish them. I could be hard on myself, and think about all the times I've stopped working toward a goal. I will give myself some credit, and realize how many times I've set my mind to a goal, and got there! 

That being said, so many things have happened in the past seven months. I've gotten a bit off track, but I guess cancer is as good a reason as any to get off track. With thyroid cancer, the whole body is affected. I will take a moment to describe the thyroid and cancer, before moving on with my changes:

The thyroid has a lot of really important functions for the body.  I did not really know this until I was left without one! The thyroid is in charge of metabolism, heart rate, body temperature, and other hormone regulation. When a person doesn't have a thyroid, they take a pill (like Synthroid) for the rest of her life.  Without a thyroid or medication, a person will die in about six weeks.

In preparation for the radioactive iodine (RAI) treatment at the end of May, I had to go off Synthroid for five weeks. The goal is to starve the body of thyroid hormone, so that when the radioactive iodine is introduced, the body will suck up the iodine and try to convert it to hormone.

By the time I made it to the RAI date, I was barely alive. At the end of May, Tennessee is smoldering. I was still wearing a fleece coat every day, and was chilly. I was always sleepy, and if I sat in one place too long, I would fall asleep. It was an effort to make it through the day. My doctor was mystified when I told him I worked until the day before treatment, and I wondered how I even drove myself to the cabin after I took the RAI pill. 

My primary concern throughout this process was to get rid of cancer. My second concern (I'm almost ashamed to admit) was that I would gain back the weight I had lost when I moved to having zero metabolism. It's sad that this would be such a concern, but as a person that dealt with such issues with weight, and after losing 115 pounds, I was determined to keep off the weight.

Luckily the low-iodine diet that I had to eat for a few weeks before treatment (and a few days after) helped to keep me from packing on the pounds. When you have to make everything from scratch, can't eat dairy, and limit a lot of high-calorie items, the weight doesn't seem to be as much of a problem. From the moment I had my surgery until I took the RAI pill, I gained two pounds (YAY!!).

Once I took the pill, I had to go into hiding for a week. My children were at risk of damage to their thyroids if they were around me for the first few days, and if they had prolonged contact for days after that. We thought the safest idea was to let me be alone. I slept twenty hours a day, drank a lot of water, and watched movies. Nothing tasted right once I was able to eat normal food again (anything with tomatoes or carbonation tasted like poison, and nothing had a real flavor).  I also had nasal and mouth sores, so that kept me from eating unless I had to. Fortunately, I guess, my weight leveled out and the two pounds were gone.

I started feeling decent around the beginning of July, but lacked the energy to make it through the day. My doctor added Cytomel (T3 med) when I was told to go back on Synthroid, and I credit this addition to helping me more than anything. I read that many people function much better with this addition than with simply increasing the Synthroid (I am now at 150 mcg).

My taste also returned around the end of June, though some things are still a bit off. I was able to eat again, but I wasn't able to make it through a normal day of activity (which is what burns calories). Unfortunately, six pounds creeped back on.

Six doesn't seem like much, but for a person that lost a lot, it could all come back starting with six. This morning I woke up, and realized today was the beginning of the change. It was time for me to get things arranged so I could feel better, get healthier, and lose the weight to get to where I need to be. The reality is that I am about 30 pounds from my goal weight, and that isn't far.  The stress of dealing with testing for recurring cancer is also getting to me, and at least this is something I can control!

So, today, July 18th, is the first day of this change.  I don't want to be hard on myself, but I do have to have some accountability. That being said, I've come up with a few goals I want to keep track of:

1. I will report progress online three times a week. (I know it's unrealistic with my energy level to report daily. I will, however, keep a log of my progress daily.)

2. I will drink at least 10 glasses of water daily. (I have always found this to be the most important goal in feeling well, keeping yuckiness away, and losing weight. Water is important!!)

3. I will plan my meals the night before, so there are no surprises.  I will also allow myself two meals a week to relax a bit (but not go overboard!).  Everyone is different, but I know I do best when I am following a plan. And it always helps to plan ahead, so I know I am actually eating. I have a bad habit of realizing I haven't eaten anything at 1pm (because I have to wait an hour after Synthroid to eat).

4. I will experiment and try some new recipes and meals. The key to sticking to something is not getting into a rut. I need to broaden my tastes anyway, so this will be a good goal!

5. Increase my activity!! I am going to log 150 minutes of activity a week.  This is only 30 minutes a day, 5 times a week.  It can be anything- walking, riding the bike and watching a show, taking a run, or doing some heavy yard work. Anything that gets me moving!!  I will worry about refining my workout goals later.  For now, I just want to move!!!

I know that 30 pounds is a pretty significant amount of weight, but it can definitely be done. Increasing my activity and watching what I eat should do well to help me along my goal.  I'd like to see myself reach the goal by the end of the year (December 31, 2013), if no more major hiccups come along.  That's a steady goal of about 6 pounds a month, meaning 1.5 pounds a week.  Being that this goal runs through the holiday season, I will have to be extra vigilant.  The advantage, I guess, is that I will be losing or maintaining during that season, instead of gaining like everyone else!! :-)

I'll keep you updated on my progress. I know that healthy eating, activity, and taking time to reflect will only help my lifestyle. Stress can no longer take over my life, and these changes will hopefully put me on the right track!

Finally... An Update...

I realize I disappeared for over a month. I guess there was a good reason...

I didn't turn on my laptop for just about that much time. And when I don't turn on the computer, I rarely type. I even realized that I wasn't answering text messages like I normally do.

I was severely hypothyroid, in preparation for the Radioactive Iodine treatment on May 24th. I had to go off the medication for 5 weeks, which means without a thyroid, I was bottoming out.  And honestly, I don't really even remember the drive to the treatment, or part of the days afterward.

I knew I had to be away from the children for a week, because they couldn't be exposed to the radiation that was coming out of my body. So, my parents took care of the children while I hid out in the cabin.  Like I said, there are holes in my memory, because I was running on empty. What I do remember?

I remember showing up to the hospital to receive treatment, reading ten pages of forms and signing my life away, then being handed a tiny capsule to swallow. I thought to myself, "this is IT?" then I was pushed out the door to start my drive to the cabin.

Actually, my endocrinologist quoted Eddie Murphy from a movie, THEN pushed me out the door to get down the road. And he warned me not to throw up in the car or on the side of the road, because that would be a nuclear accident. Fantastic...

I slept for about 19-21 hours of the first three days. I knew I was overtired, and I was in the darkest room for sleeping. It was a good thing that I had slept so much, but I was also worried that I wasn't monitoring myself like I would like. I knew I was alone in this, so I at least had to be aware if something was wrong.

After a few days, I was going stir-crazy. A few friends had wondered how it would work out: an extrovert like me being stuck in the woods alone for a week. I could be around people on day 4, I just couldn't be around little kids for extended periods. So, I went for drives, stopped in little shops for short periods, and twiddled my thumbs until I could go home again.

I did have a few adventures along the way. I scoured my favorite used bookstore (McKay), and found some books to read for the remainder of my stay. I picked up a natural living newspaper, found an ad for a pizza place, and decided to go visit.

The experience? I came into Lupi's, marveled at the tree sculptures and psychedelic twinkling lights on the ceiling, and decided to try something different. It was definitely something out of the norm for me, and I decided to embrace the experience.  My taste was also altered because of the medication, and so I wondered what would even taste normal.

The whole experience was anything but normal. It was a good experience, don't get me wrong. It was some of the best pizza I'd ever had. But listening to a man from suspected Polynesian descent belt out the lyrics to an old Elton John love duet under a disco ball, while twirling pizza dough.... This wasn't my typical pizza experience. I wondered if the medication was changing my perception, and then I realized I always notice stuff like this. I sent a message to my friend Robin, telling her briefly of the experience. Her response: "I'd love to see the world through your eyes. Even these brief glimpses are a treasure."  I love that my life amuses her...

I hate malls. I can't stand how everyone is darting around in different directions, and it seems that people believe their agenda is the most important. Heaven forbid I get in the way of a lady trying to get to a Hollister sale.  Nevertheless, I missed seeing people and I needed to go look at something.  So the final two days, I spent my hours wandering around the mall looking at things. Actually, the mall is a pretty decent place in May- there's no real rush for anything.

I finally got to return home, and was thrilled to see the kids. I was also being watched because my calcium levels were still dipping. At this point, the doctor started to wonder what was going on. I was under a lot of stress, which doesn't help calcium levels at all. So, I had to start going to get blood work again, and we started to wonder what was going on with my body. My parathyroid glands were looking great, so this left some confusion about my body. 

I looked pretty good, considering I was going through cancer treatment. Still, I felt miserable. I had sores down the inside of my nose and throat, my tongue was swollen, and my neck was tender. I couldn't taste food, and some food even tasted poisonous. I was incredibly tired because I had just started back on thyroid hormone medications, and it would take a while to get back to normal.

So, I did what any normal human being would do... I started teaching summer school. Through all of this, I have to remember I am a single parent and the one that is ultimately responsible for the care of the kids. So, I take any opportunity to build up additional income, knowing they are getting their tonsils out in July, and I will be the parent that has to pay for the surgery up front (and wonder if I will receive half back...).  Summer school only has one week left, so I guess we could say I survived.  I could make it through the days better if I wasn't so TIRED. I wake up exhausted, and spend twenty minutes mentally preparing myself to get out of bed. I know that in a few more weeks, my thyroid hormone will be back to normal and I will feel like living again. I can't even imagine how nice it will be to feel normal. 

I'll make an effort to catch up more at a later point (but soon, I promise!). I guess even typing and trying to remember things can wear me out. I have a lot of thoughts I wrote down in journals or on post-its during the past few months. Once I get a chance to convert them to normal human language, I'll make sure I update this post. :-)