Where's Tommie??

So, for those of you who have known me awhile...the appearance of Tommie in our life has probably seemed sudden. Ok, I know it has seemed sudden because a lot of you have told me. I have heard from more than one person, "who is Tommie?" We met about a year ago and our friendship has just happened. The only explanation I have is that there are some people you are just supposed to know....she must be one of them. One of our closest friends keeps saying, "she is family and I haven't even met her yet." Which has started a joke that Tommie is not real. So, this is for you Linda......until you can meet in the flesh you will just have to trust that these pictures are real (and not me with a cardboard cut out)!!

Balance Beam

I had to get this one down before I forget it.
We were driving in the car the other day listening to a kid's cd. The song was about a kid practicing on a balance beam and saying "I'm getting better every day." Layne got really excited from the backseat and the following conversation took place:

Layne: "mommy, this is your favorite song."
Me: "Really? Yeah. OK. I do like this song" (I had never heard this song before.)
Layne: "Because it says I'm getting better everyday, like you."
Me: "You're right Layne. I am getting better everyday."

OK. So maybe I was wrong about her not really understanding that I'm not 100%. I guess I don't give our sweet, smart 3 year old enough credit. I just want to shield them from any worry, fear, and general bad stuff. But, in this situation....it is just impossible. Everyone says, "it is good for them to learn these lessons now." Really? I don't think so. I think it is good for kids to be kids and not worry about adult things like leaky spines, financial woes, and death. No, you can't protect them from all bad things BUT I REALLY WANT TO!!!

I'm worried that Syd is going to quit believing us because everytime I go to LA I tell her I will be better when I get back. Obviously, that has not been the case. I think this time I will tell her that I will be better eventually but I'm not 100% sure that this will be my last trip to LA.

Everytime I hear Syd tell Layne, "we will do that when mommy gets better" a little piece of my heart breaks. For now I am trying to do as much normal stuff as I can with the family. Cook dinner, eat with them, make lunches, help with homework, go to cheerleading games, etc. Things that I can do if I'm fortified with pain meds and a way to put my head down after about 2 hours. Now that I know bed rest doesn't help and being up doesn't hurt.....it is just a matter of how much pain I can tolerate before I become a complete bitch.

My spine might still be leaking but maybe I am getting better at walking on this balance beam.

Bigger Than My Body

Ok. I am not really a J.ohn Mayer fan. I don't have anything against him, I'm just not really into his music. I don't really know his songs or much about him. I woke up this morning with this verse in my head, "I'm bigger than my body gives me credit for." Weird. I haven't heard that song in a long time. So, I decided to look it up and listen to it. First, I looked under D.ave Matthews Band because that is who I thought sang it. See....I really have never had ANY connection to this song except for hearing it in passing on the radio. When I looked up the lyrics, it kind of took my breath away,

"This is a call to the color-blind
This is an IOU
I'm stranded behind a horizon line
Tied up in something true

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for

Why is it not my time?
What is there more to learn?
Shed this skin I've been tripping in
Never to quite return

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
Cause I'm bigger than my body now

Maybe I'll tangle in the power lines
And it might be over in a second's time
But I'll gladly go down in a flame
If the flame's what it takes to remember my name

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body
I'm bigger than my body
I'm bigger than my body now"

Also, this morning I was doing some reading and came across this quote from Thomas Merton, "I am nothing. It is not my job to understand."

So, that is what I'm going with. I'm bigger than my body gives me credit for and it is not my job to understand.

New name

I think I should change the name of this blog to, "The Headache" since that is what I have been talking about since October....yes, October!!! Ughhhh!!!! But, I want to chronicle this journey because I do think it will end EVENTUALLY and I want to remember the life lessons I am tired of learning.

So, long story short, the headaches are not gone. The post op pain has gotten MUCH better which means I can now tell which pain is which. When I lay down, not much pain. When I stand up, pain. It really is that simple. I can make it through several hours (almost an entire day) armed with pain pills and the ability to lay my head down when it gets really bad. But, by evening I. have. to. lay. down. There is NO way to avoid it. I even got to enjoy some of the nausea and ear popping today because I really pushed it to far. I can't really concentrate on anything serious for any period of time, which makes work impossible and the pain always reaches a threshold where I get really snippy. I have emailed Dr. S and the plan is for me to wait another week (after this one) to make sure and to let me continue to heal from the last surgery before going back to LA. The writing is on the wall, I know I'm going back. I have no idea what the plan will be this time. Truthfully, it doesn't matter. This is my only option. I have no control. So, as they say on AI, "you are going to Hollywood." This time Mere will stay home with the girls and Tommie will go with me the entire time. We can't keep uprooting the girls and LUCKILY Tommie offered to go again without me asking (I had ZERO intention of asking her to do this AGAIN). At this point in time, she knows all the doctors, the hospital, and the whole routine. And, having her there really is perfect (for me, not so much for her). Sometimes people are just put in your life and it just works. I'm just going to go with it.

I have spent a lot of time in fear of a lot of things. Mostly, that Dr. S won't be able to fix me, I won't be able to work, and I will always be in pain. For some reason, those fears are leaving. I have a deep, abiding faith that just won't let me believe that I would be brought this far and not be able to be a doctor, a mother, a wife, a friend, a daughter, a sister. I will have so much to give after this experience. So much to give back. I'm ready to get on with it! Unfortunately, I have learned that my timeline is meaningless.

I have spent my life planning. Setting goals, meeting goals, and moving to the next one. I have spent my life in the future. Suddenly, I can't plan. I can't say what I'll be doing next week or next month. Of course, I never really could....that was just an illusion. I have today and I am TRYING really hard to enjoy it while I can.

Mere is exhausted. I think the sheer worrying has almost put her over the edge. If I hiccup wrong, she jumps up to check on me. If I get up in the middle of the night, she is up to. If I am in the bathroom for to long (or any room for that matter), she comes to find me. She usually asked me if I have taken my D.ilantin (anti seizure medication) at least once a day. The last surgery caused some (likely temporary) damage to my laryngeal nerve, resulting in hoarseness and occasional trouble swallowing liquids. The end result, I cough a lot because liquids are always going down the "wrong" way. Every time I start coughing, she is there making sure I am ok. I think when this is over, she might sleep for a month. I maintain that I would NOT want the tables to be turned. I think it is easier to be the sick person then the spouse of a sick person. I may not be a smart woman, but I know what love is and ours is getting stronger and bigger by the hour.

And, there is some good news. I called CS hospital last night to start discussing payment plans. Thus far my medical bills (even with insurance) are somewhere near $100,000. I'm SO glad I have insurance (that was sarcastic if you couldn't tell). The woman on the phone was SO nice and helpful. Turns out, they have a financial assistance program that she was pretty sure I would qualify for. She said she feels like it will at the very least pay 60% of my medical bills and at the most 100% and it is good for 6 months. So, first I pray that my spine will get fixed and then I pray for the 100% assistance. Either way, I think it is AMAZING that they have such a program and it makes me want to donate money to them some day (when we actually have money again).

Ok. I'm going to try to get some sleep now. I have a perfect 7 year old sleeping next to me just waiting to be cuddled.

Fear and Uncertainty

So...we are back. Life is no where near back to normal but we are back and together as a family, which is the best gift that can be given. This surgery was A LOT more intensive and invasive then the last one. The pain has been much worse than last time and I have had to rely on pain pills a way more then I like. And, since there is so much post op pain it is impossible to know if the surgery worked. Dr. S said it will take 4-6 weeks to know for sure. And, that is where I spend a lot of time trying to stay out of the fear. If I could know that I was for sure fixed, then I would not have any trouble getting through the recovery. I'm just so TERRIFIED of having to do this over and over again. The good thing? Dr. S said he will not give up on me. That made me feel hopeful and good. For now, 4-6 weeks with no driving and no lifting over 5 lbs. That is really all I have control over right now. That is it. The rest is not up to me. This is a very hard pill to swallow. The financial uncertainty combined with the fear of continued bad health is really just life altering. I don't know how people do this. The further this goes, the less I identify with the doctor and the more I identify with the patient. I know there are no certainties in life....I could get hit by a bus tomorrow. But, when the illusion of certainties is shattered, it starts to mess with you. I pray A LOT and I am trying really hard to rely on my higher power but that is not always as easy as it sounds (or maybe it is).

Syd is confused and a little scared about what to do with me and Layne just wants me to pick her up. I know that if this ever ends, they won't remember this time and for that I am grateful.

I am also grateful for the amazing friends that we have. When we were still in LA, Rae (one of our online buddies) went way out of her way to pick Mere up at the airport and bring her to the hospital. To top it off, she had a basket full of goodies and a gift card waiting for her. The most amazing thing? She collected money from our online friends to make it happen. These are the things that make you know there is a God and that people are good. What an amazing thing that you can have a connection with people that live miles away and that you have never met in person. Thank you doesn't seem like enough, but it is all I have. So, Thank You!!!!

Surgery

Today is the day. Surgery. Again. I talked to Dr. S last night and he says that the old leak is not completely sealed, SO he is going back into the same spot to revise the surgery. For some reason this makes me feel better then if there was a whole other leak. Still surgery, but I feel better. Right now I'm mostly just worried about the what ifs. I have experienced a lot of the what ifs, and frankly, I'm through with what ifs.

The latest what if is contrast dye and seizures. So, it was after the myelogram and Tommie and I were hanging out in the recovery room. That is the last thing I remember. Apparently, I started screaming and thrashing around. I. was. having. a seizure. I wish I had some great way to describe it but it is all so blurry. I do remember seeing Tommie there and knowing that she was with me but I didn't know who she was, or her name, or where I was. She looked scared, I remember that. There were lots of people talking to me. I don't really remember much until I came to in the ICU. That is when I started to get the story from Tommie. Apparently, the contrast dye can cause seizures. It is rare, but it happens, suprise! I guess after a bazillion myelograms you start playing the odds. We spent the night in the ICU with the worlds nicest nurse. The next day, they discharged me back to the hotel to return Monday for surgery. We have spent the weekend just hanging out and waiting.
I'm just so THANKFUL that we had not been discharged and we weren't walking down the hall or the street when the seizure started! There is always something to be thankful for....can you tell I've been with Tommie for a week?
Mere comes in tomorrow and Tommie leaves. I cannot wait to see Meredith!!! But, I'm glad that we did it this way. The girls didn't have a REALLY long time without us and Mere didn't have to see the seizure experience (which, according to Tommie was not a lot of fun).

Can I just say, time in LA crawls? These are the longest days of my life! Mere agreed when she was here and Tommie agrees now. It is strange. The days go on and on and on. It is 7am here, surgery is a noon and we have to be at the hospital at 10. There a million hours between now and then, or at least it seems that way.

Some things I don't want to forget:

--we are staying in a really cute hotel with a great little Italian restaurant. Last night we had the CUTEST waiter from Argentina. He was super yummy, so was the food.

--Tommie saw Barbra Streisand in the elevator at CS hospital. She played it cool, didn't say anything. Wonder if she will be there today?

--There is the sweetest gray bird here named, Shadow. He sings a lot and seems very happy.

I would definately stay at this hotel again!

So, the plan:
Surgery today. Mere come in tomorrow, Tommie leaves. Hopefully, home by Friday, but I really have NO idea.

One More Time

Life was good. Ok, life IS still good, just not what I planned. Of course, I am learning that my plans are silly and insignificant and rarely matter. It was last Thursday when the headaches started to become noticeable. I had to lay down at the end of a long day, I was having trouble concentrating on patients, and I just felt yucky. Could it all be in my head? Maybe. At least that is what I was hoping. Well, fast forward to today. Here I am, back in LA getting ready for another myelogram.

Long story short, they are back. I had a full spine MRI yesterday which showed some leakage at the old site. The surgeon said it could be new or it could be post op from my previous surgery. The only way to find out is a myelogram. Luckily, they are going to sedate me this time. Whew! He said that if the myelogram is abnormal, then I get to have surgery again. If it is normal, then maybe another blood patch. So, I find myself in a strange situation.....hoping for an abnormal myelogram and surgery. At least if it is not normal, then he can find the exact spot and fix it. If it is normal, then what? Non specific blood patches and unanswered questions. Can't go there now....not going to.

Tommie is here with me and Mere is still in LR with the girls. We are going one step at a time right now. I will post more as I know it.