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.
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.