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.

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. :-)

My Outlook

     Well, it has been the better part of a week before I posted. I have actually attempted to make this post two different times, but never completed it.

     On Friday, I visited the doctor and learned that he removed the one cancerous tumor. He said my chances of survival were pretty good, and I will be getting radioactive iodine treatment. He was pretty casual about it, but I made it to the hospital before the nurse called me. My calcium levels were still low, so I was getting my blood drawn AGAIN. I hated that the people at the hospital now knew me by name...

     I was told that the endocrinologist wanted to see me Monday morning. They wanted me in QUICKLY. I agreed (because I didn't have a choice), got my blood drawn and headed back to work. I started feeling progressively worse as the day went on, and at about 2pm the nurse called to tell me that my calcium levels were as low as when I had problems in the hospital.  I could tell something was up, because my muscles were twitching, I had terrible cramps in my legs, and my face was shuddering. They adjusted my supplementation again, and I went home to rest. 

     I will say I barely made it home. I felt absolutely miserable. I don't remember much of the night, other than talking to a friend for a long time. He did a good job of distracting me from my discomfort.  I called the doctor, and he told me to take more meds. I went to bed finally, hoping everything would sort itself out.

     The weekend was easy-going. On Saturday, we had a tea party for Carly's guest (a friend from school). By Sunday, I didn't leave bed except to make a cake in the morning. I was absolutely drained, and there was barely enough energy to eat. If I could have operated from bed, I would have been happier. I was a bit worried about how the week would go if I felt this bad on the weekend!

     Monday came around, and I had to move the appt because of a work meeting. I arrived in the afternoon, to find that there was definitely cause to remove the thyroid. There were multiple nodules that looked strange, and the cancerous mass. I knew I did the right thing, but it helped to have more people back me up. They told me my schedule for the radioactive iodine, and went over how the withdrawal of thyroid hormones would work.

     I told the doctor that I had gone through hypothyroidism before, and I knew what it was like. She laughed... HARD. She told me she saw and heard about my symptoms, but that my levels were never significantly below the appropriate level. In short: she told me this was going to be BAD. She said I had a great outlook, but to prepare myself for the worst. I was going to have ZERO energy, muscle pain, hair issues, my voice might get weird, and I will be moody. Very, very moody.

     I took notes, and headed home. Well, actually I headed BACK to the hospital to give them MORE blood, then headed home. As I walked into the hospital, I saw on the news that there had just been a bombing at the Boston Marathon. I remember looking at the news, and wondering if this was a sign of some sort. It seems like there's always something, and it saddens me to think that there's so many people that don't value how precious life is.

     I got home and intended to write about the experiences. I had been trying to write for the past few days. I guess my body finally became less vigilant, and was finally able to rest. I also tried desperately at work to get a lot done, because I knew once the medication withdrawal started, it was going to be a rough road. It would be better to get everything done, then I could sit back and enjoy the end of the year.

     I'd like to say it's been easy the past few days, since I am recovering nicely. In reality, I barely get home from work, and am in miserable pain. I make it home wincing in pain to get through the doors of the house, and it's a battle to get everything done for the evening. I am just praying for Friday to get here QUICKLY.

     Last night, before I fell asleep, I was thinking about the future. I thought about plans to get me through the summer, plans of what would ideally happen in the next year, and even where I wanted to be in the next ten years (the purpose of this blog). I also realize that I am a fantastic planner, and wanted to have plans around for things "just in case." I guess the fact that I can even write about all of this without crying tells me I have a certain level of detachment that is necessary to cope with all of this mess. I am definitely not saying things will go bad--I just realize that the POSSIBILITY is out there.

     I also thought about my friend Scarlett, and how she told me this is one more thing I will conquer.  I thought about all of the stuff I've been through- attack, TBI and long recovery (wheelchair to walking and running), abusive relationship and getting OUT, raising two kids on my own while working and trying to normalize their life, even surviving an attack in college. Suffice it to say, if I come to it, I will go through it. I guess cancer would inevitably make its way onto that list. Gee, when I look at the list, I can see why I intimidate men. ;-)

     I'm not as verbose today as I was last week (can you imagine? this is short for me!). Tonight, I have a lot of thoughts swirling in my head. I know that I need to sort through these before I can write, but I also wanted to let you know where things stand.

     I have yet to tell my friend Jere about this situation. I am usually quick to tell him about everything. I just don't want him to worry, because he is an oncologist. He has dealt with great success stories, and he's had terrible stories to tell. I have always wanted to be one of the good stories he tells. :-)

     Alex lost his first tooth last night. I was so excited, because he has been looking forward to this milestone for weeks now. I felt a twinge of anxiety, because I saw how important it was to see this milestone. I had already been fully aware of these special moments, because I wondered how some people would choose to miss them! I realized that now he's losing a tooth, and won't be my baby boy for much longer. He'll be graduating kindergarten, sailing through grade school, and will be graduating in 2025. It won't be long before he has his career and family. And I hoped and prayed to God, in the ten seconds it took me to think of all of this, that I would be there to get the call from my grandchild, telling me he lost his first tooth! It's moments like these when I realize that a lot of great can come of my life. I also realize it is terrible precious and fragile, and I need to enjoy it while I can. 

I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.                                   -Psalm 139:14

     This has been a Psalm that's been on my mind quite a bit lately. I am mystified at my life, and I know my friend Robin talks about how I can make hugging a trucker in a parking lot sound magical. I am so grateful I have that ability, and can see the amazing in the ordinary. It makes me appreciate really how much awe and amazing is created in every moment, and I am grateful for all of these experiences that have added so much to my life. Our trips around the sun are really too few, no matter how many years we get. They key to all of this is finding a rich life, and appreciating that we are fearfully and wonderfully made, no matter what our religious path. No matter what news we receive, or day we have at work. No matter what ideas are floating or pounding or swirling around in our heads. We all need these moments to center us; these moments where we lie on the driveway and stare in awe at the dark universe.

     And for me, I was always the one to watch in awe. I will say there's an added glisten to all of these ordinary moments. I feel like I am seeing things differently, and really seeing how fantastic our world can be. Maybe that's the best gift I could receive right now, when terrible things happen and so many people are fearful. I know my place in this world, and my purpose as well. It is to inspire change, and to show love. If I can say I've done these two things every day, then I've served my purpose. This is really quite a feeling of contentment, and one that will ensure restful sleep tonight.