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.

Embracing the Moment

Earlier in the week, I visited my friendly hematologist. He took 21 vials of blood two weeks ago, and told me he was sure he'd have some sort of answer for me on Tuesday.

Now I had been to the neurologist at the beginning of the month, and wasn't terribly thrilled when she confirmed my diagnosis, and told me it was most likely a combination of Essential Tremor and young-onset Parkinson's Disease.  Having the thoughts in your head and comments from doctors is COMPLETELY DIFFERENT than hearing a neurologist say "you have a problem..."

Awesome.

So, I wasn't terribly thrilled to go see another specialist. To be honest, I wanted to get answers, and I have been feeling disheartened because it has taken five years to get the answers. But I also felt more comfortable with some things just being a "maybe." Sometimes getting results means I finally have to deal. I am a fairly well-adjusted person (in my opinion), but I also feel like I've dealt with more than my share lately.

So, I sat in the exam room and waited for him to arrive. It didn't help that the appointment took two hours, so I felt like I was waiting in Purgatory.  When he finally walked in, I could already tell he had some thoughts in his head. He had something to share, and he didn't wait too long before starting into his speech...

"We ran TONS of tests on your blood, because we needed answers. We did get a POSITIVE back on one of our tests for clotting disorders.  As you know, your blood clots WAY TOO EASILY, and that's a big problem. Now we know why.  You have Factor V Leiden Thrombophilia."

I just blinked at him. I remembered how they had taken all of those vials, and how it took FOREVER because my blood was clotting in the collection tubing. I remember looking at the tubing and wondering how on earth that could even happen.

He told me that it was with me since birth, but we probably didn't pay enough attention to it until now. He said this is what was causing my TIAs, and was the reason I had pregnancy complications and two miscarriages. He said that honestly he was surprised I was able to have two healthy children, even with the complications that came along with them.

I asked him what I needed to do, because I obviously didn't want my blood to keep clotting up, and causing major issues like strokes, pulmonary embolisms, etc.

He told me the problem was that he didn't feel comfortable putting me on potent blood thinners yet, because I have accumulated quite a few minor injuries from my clumsiness and shaking (remember last post?). He pointed to the cuts and scrapes I had, and told me I would be in big trouble if I had super-thin blood while slamming into everything and cutting body parts. BUT THEY WERE KIDS SCISSORS!!!

So, right now he wants to try a "wait and see" approach. He'd like to wait for the signs of a clotting problem, then make that the beginning of treatment. I can understand where he's coming from, but I am also a bit nervous about that. He also wants me to get the tremor medication worked out, because he feels more confident with trying blood thinners once I am not a risk to myself... LOL

So, I came home from that appointment TIRED. Beyond all of that info, my blood pressure has been dipping dangerously low (114/40), and it has been making me feel dizzy and just miserable. It was my intention to rest and feel better for Wednesday.  I had heard a rumor that snow might be coming to the area, but I didn't believe that would happen anytime soon. It just doesn't happen here anymore.

Well, the kids were off on Wednesday (and my mom was home as well). I was excited, because we had the opportunity to play games, watch cartoons, play dolls, run around outside before the snow, make homemade pizza for lunch, and snuggle. I was excited we got a day together, and I really needed that after such a tiring day on Tuesday. I even got a pretty decent nap, so that made for a good rest of the evening.

In the evening hours, the snow started to fall. My dream was coming true!! I know it sounds cheezy, but there's NOTHING better to me than to watch snow fall. I like the peace and quiet that happens when I am watching the snow drift. I can sit and watch it at a window for hours, which is probably disturbing to most.  After all of our excitement from playing all day, both kids were asleep before 7pm. I tiptoed into Alex's room, and told him to put on his robe and boots. He popped his little head up and wondered what was going on. I told him I had a surprise for him.

Something I had been thinking about, as all of these issues have been happening; probably the scariest thing for me to deal with is the idea that I won't be able to do everything I want to do with the children.  I feel bad sometimes that they have never had a mother that's 100% healthy all the time, and really that's the only parent that is around. They have grown up to be compassionate creatures, and we still have fun, but I sometimes wish I had the ability to do so much more.

So, when the snow started falling, I decided we needed to embrace the moment. I took Alex outside, and we stood for ten minutes, feeling the snow fall on our faces, and catching flakes. There was such a peaceful stillness in the air, and we loved watching the snow falling under the security light on the street. I even turned on the flood lights so we could watch the snow fall inside the house, on the staircase.  Here's a picture of my snow buddy:

We headed to bed, and by the time I fell asleep we had about two inches on the ground. I will admit that I did sneak back outside by myself later, to absorb that feeling of quiet again. :-)

This morning, I heard my bedroom door FLY open as Alex burst in to announce that it had SNOWED BIG TIME. He was SOOOOOO excited at the winter wonderland outside, and he told me how it looked from his bedroom window, from the balcony window, and from a downstairs window. Apparently angle is everything when viewing the snow...

So, even though I hadn't been feeling too great, I decided we needed to embrace this moment.  Me and the kids were going to make snow angels! Yes, a person with recent ACL surgery and a broken leg, along with various pain and neuromuscular issues thinks it is a good idea to make snow angels.

Here we are (thanks Mom for taking the pic!):

I thought about the numerous reasons why the snow angels may not be a good idea, but then I thought of one really good reason why this needed to happen: It hasn't snowed in a while, and I don't know when this will happen again. The kids need to have a memory of me playing in the snow with them, in case I am not able to do things like this later.

So, we threw piles of snow "dust" (the snow wouldn't pack, so it looked like glitter glistening against the early morning sunlight).  They found big hunks of snow to eat, and took turns sliding down the slide into a pile of snow. I'm glad they had that opportunity to get out there with me, and they were grateful for the hot chocolate when we headed back inside! :-)

These past few weeks have been adjusting to a new reality. Where there have been suspicions and questions for some time about what my future might hold, now I am faced with a bit more certainty about the uncertainty, if that makes any sense. It was fun to be able to take some time to enjoy my little ones, and to make some memories that will serve us well as years go by.

None of us really knows what the future holds. I try to keep in perspective the fact that there have been so many rough things that have happened to me so far, and I've survived them all. But I also know that there's only so many battles one person can handle. So, I take comfort in my good friends that reach out to me, and my family that is there to catch me when I stumble.  And I thank God every day for a little voice that tells me in the morning "don't you know that you are the best mommy a girl could ever have?"  Some days I don't feel it, and I wonder what the future holds; in those little eyes though, it seems like everything is working out just fine. 

<3

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. :-)

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!

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.

An Evening with Jere

         This past Thursday, I had the pleasure of joining a good friend for an evening of dinner and schmoozing at a fancy benefit dinner.  The event was the CABIA Annual Benefit dinner, and that is the Chattanooga Area Brain Injury Association.  Suffice it to say that everyone in that room (all 150+) were in some way touched by brain injury.  If you'd like a slap in the face of the reality around you, attending a dinner such as this would be a great way to do so.

        Jere sent me a message Tuesday, asking me to attend the dinner with him.  He was worried it was too short notice, though I remembered that I was supposed to have the event on my calendar in the first place.  I arranged a babysitter, and told him I'd be there.  I remember sending a message back to him asking what the attire would be.  His response: "wear pearls and comfortable shoes."  It seems I never get a typical response from Jere.

       I realized I hadn't worn a dress in ages.  I guess the last time I wore one was graduation night, and that was only briefly enough to get to the event and back home.  I am not a dress person, but it seemed that the evening would be a reason to delve into something new.  Tuesday evening, after class, I hit the clothing stores looking for a dress.

       The other task was interesting: I did ask my boyfriend if it was ok that I attended a swanky dinner with another man.  This seemed to be a strange question, because it was an all-around weird situation.  Jere was "another man," but it was definitely different with him.  He was a good friend, a kindred spirit, and it was a different type of relationship from the normal "other men" that are out there.  Travis said he could have me for twenty bucks...  I am thankful I am dating an understanding man. :-)

       On Thursday, I finished work and took off down the interstate.  I remember curling my hair and changing clothes between classes!  I knew that even if I left at 3pm, I would barely make it to the dinner in time.  I pulled up to the location, The Mill in Chattanooga, and saw Jere wandering around the parking lot.

      Jere looked whimsically dapper.  He was cleaned up, with a dress shirt, tie, and coat.  I was entertained with how the colors did not match, but complemented each other so well.  It gave him the look of an absent-minded professor, but made him absolutely charming at the same time.  He gave me the once over, and told me I looked splendid.  We went inside to check in and find our table.

       Through the evening, we talked with many people who have themselves dealt with brain injury.  The whole experience made me realize how little I talk about the subject.  I guess even though I have wanted to interview people and write about it, the whole experience to me is just something I need to suck up and deal with.  I guess I feel like rehashing all of my feelings over and over again will just waste time.  I do know better of this now, and realize there is a tremendous amount of support around me, if I am willing to ask.  I met a woman that has almost no short-term memory, and always meets someone new (even when she has met you twenty times before).  I met a few people that shared physical disabilities along with their brain injuries.  We sat with a couple that actually met, dated and married AFTER the brain injury had occurred (which gave me hope).  All in all, it was an absolutely wonderful evening.

       The speaker was a lawyer from Atlanta that had suffered a brain injury in 2004, after a car accident.  He talked about reach out to those around you, and to spreading knowledge of brain injury.  Everyone knows what concussions are, but very few people understand the effects of brain injury, and that the recovery is life-long.  There are so many people that are so very lucky to be alive, but that doesn't mean they aren't still pushing and clawing their way through life.  Recovery is never meant to be easy, and a life-long recovery can be grueling.

      After hearing him speak, we said our goodbyes to those around us.  Jere and I made small talk all the way to the parking lot, where he asked me if I would be able to drive home.  I told him I should be ok, as I let out a yawn.  He told me I needed coffee, and that we would grab a quick cup of coffee before I hit the road.  I got in my car to follow him, and we drove through the streets of Chattanooga, in search of liquid energy.

      Following Jere through the streets of Chattanooga is like following him in any conversation.  He is incredibly intelligent and quick-witted, but he also makes connections and turns that most people don't see.  Trying to keep up with him leaves me mentally exhausted.  I was relieved when we pulled into the parking spots at the Bluff Art District.  We would be visiting Rembrandt's, the coffee shop where we first met and talked.

      I did a quick mental calculation, and realized it was just about one year ago that we made our first trek to the coffee shop.  I didn't say a word, because I knew that this tidbit was probably irrelevant.  We got out of the cars and walked to the shop.  I am always entertained by the glances and fake smiles we receive when walking about town together--it must look strange to see a white-haired sixty-one year-old with a young, thirty year-old brunette.  I chuckled to myself, because those people didn't realize that this wasn't some strange relationship they read about in the tabloids.  This was the meeting of good friends, ready to connect and share their life experiences over coffee.

      Inside, I ordered a cup of coffee and a dessert, and he did the same.  We sat down at the table and began to chat while our order was being prepared.  I could tell by the look in his eyes that he was ready to get down to the real conversation.  It's hard to be ourselves in front of all of those people.  As much as we make sense to each other, I believe our conversation would seem odd in front of an audience.

      He asked me about my experience in court earlier that day.  I told him about the drudgery of dealing with child support court, and he commented that he expected sparks to fly and fire to come from my eyes when I spoke of my ex-husband.  I told him that honestly, he wasn't worth that much energy anymore.  There are bigger and better things ahead of me, and those thoughts would only hold me back.

       We moved on to talk about brain injury.  I couldn't tell if my thoughts were coherent at that point, but he seemed to understand.  He always seems to understand what I am saying, even when I am not quite sure I am saying real words.  I tell him how frustrating it is to deal with the recovery, how I have great days where I feel like I am the "old me," and then many other days where I can't even remember who the "old me" was.  My frustrations are with my processing speed, my memory, and my indifference to the people around me on any given day.  I know that all of these are valid complaints for someone with a traumatic brain injury, but I still don't like it.  I know the biggest part of me that hasn't recovered is my spirit, because I am still grieving the person I thought I was before the accident.

      I say that because sometimes I become confused.  Sometimes I wonder if I am remembering who I once was, or if I am having thoughts of who I always wanted to be.  And since everyone around me seems to want to cut me a lot of slack, I have to depend on myself to remember what life was like before.  And Jere, bless his heart, worries I don't get enough sleep and give my body enough time to heal.  I know he's right, but I still feel like I am making up for lost time.  Every day, I wake up and go to bed feeling that way.  Sometimes I take it in stride, and sometimes it terrifies me.

      Toward the end of our conversation, we talk about writing together again.  The whole reason we ever came together was because I was writing, and he was someone I needed to interview.  This evolved into him helping me write, then a joint effort.  Through the year we have both gone through peaks and valleys, and our writing effort has suffered.  This evening was a time that we could make plans to write, and to make a commitment to finally doing something about it.  

      Eventually, the coffee and dessert were gone, and I realized I had an almost-two hour drive home.  We walked out of the shop, and down the street.  He told me about how his house was going on the market, and he would be moving to North Carolina.  I could feel my heart stop, because I wasn't liking the idea of him moving so far away.  It's not like we see each other even weekly, but I like knowing he's only a few hours away anytime I've needed to chat.

     We walked to our cars, parked on top of the bridge, and turned to say our goodbyes.  He grabbed me and pulled me close to hug me, and I felt the stress of the day fade away.  He told me how much he leaned on me, and I almost cried when I thought about how much I have leaned on him over the past year.  I honestly owed much of my success in this past year to how grounded he has made me feel.  Having someone who has been to hell and back, for just about the same reason, can make the world of difference.  Being able to say whatever I want, whenever I want, and knowing he has felt the same way makes a big difference in dealing with issues.  And knowing that whenever I try to convince myself of something, he will be there to call me out on my BS and push me to find the truth. THAT is the mark of a special relationship.  Whatever happens from here on out, I know that this has been a truly magical time for me.

     I also had a brief moment where I wondered if the people driving below had looked up to see us.  I wondered what they saw while driving--a man with silvery hair, holding a young woman for dear life, on top of a moonlit bridge.  I wondered if anyone questioned the peculiarity of our pairing.  I know I've questioned it often, but have always remained grateful for divine intervention.  

     And Lisa Morgan.  You see, Lisa Morgan is the woman that introduced us a year ago in Siskin Rehabilitation Hospital.  I can remember it like it was yesterday... Jere walked through the door, and Lisa told us we could go sit in the cafeteria and talk.  His response: "cafeteria food sucks!" He then looked at me, a stranger, and said "Let's go somewhere else and eat. I'm driving."

    I looked at him, and gave an immediate response of "sure!"  I hadn't thought through the fact that I didn't know the extent of his brain injury.  I only knew that this would be someone interesting, and I was determined to find some adventure.  I remember Lisa's final words as we walked out the door together:

"Don't let me see you two on the news!!!"