Sunday, January 22, 2012

The Awakening... Can I Go Back to Sleep?

These past two weeks have been nothing short of surreal. Over the Christmas break I began to get ready to sew again. I have obviously not been sewing much but I was looking forward to getting back to it. I cleaned my house, I was planning on going the Tiny Stitches retreat at Amicalola Falls and I had an idea for how to deal with a UFO that bugged me all last year. Pretty cool stuff.

 Kay went back to school on a Tuesday. On Wednesday I began to clean up my sewing supplies. On Thursday I began to cut the fabric I needed for the retreat only to find I didn't think I had what I needed, so before I cut anything I decided to drop by Tiny Stitches on Friday morning (among other errands) and make sure I wasn't making a mistake. I went to bed that night and when I woke up, I was in my driveway. True story. It gets better. I was being loaded into an ambulance by a guy who looked like he belonged on a soap opera. Trust me, if you have to be loaded into an ambulance and wake up in the middle of the job it's a very nice bonus if the guy doing the work is not only nice to look at, but nice. He talked to me the whole way to the hospital explaining to me what had happened. I had no memory at all. It was not quite 5:00 AM. The only things I knew for sure was that Lyman and Kay were in the driveway with me. Lyman had woken Kay up to come kiss me goodbye, I honestly think he thought I might not make it and he didn't want her to not have a chance to say goodbye. They were staying behind so she could get on the school bus and then he would be along to the hospital to check on me. The EMT told me I had a seizure that woke Lyman in the bed. All I can imagine is that it must have been some seizure because there have been times when I have been unable to wake him when I am actually trying to do so. He called 911 when he realized he couldn't rouse me and they came right over (they are just 10 minutes down the street) I'll be honest, I'm glad I remained unconscious for all of that.
We got to the hospital and I was put in a trauma bay. I remember wondering to myself "Really? I feel fine, do I really need a trauma bay? I could go to a regular ER bed, I'm sure." Within what seemed like minutes they were telling me I had suffered a stroke. I did not believe them. I felt fine. I hadn't even wet my pants, aren't you supposed to wet your pants when you have a seizure? I wasn't trying to be difficult but the only part of this that indicated any of it was real is that I am a light sleeper and somehow I was removed from my bedroom, down the stairs and out of the house without being woken up. Apparently they were worried that this might not be the end of the trauma. They were admitting me for testing and observation. I really didn't care what they chose to do which was another indication that perhaps something was really wrong. You'd have to know how much I don't care for westernized medicine, hospitals or doctors to appreciate this. Just take my word for it now. Then someone came in, a neurologist I think, he told me I didn't have a stroke, I had a brain tumor. I'd like to go back to the idea of a stroke that hadn't done any damage, thank you. Nope. Brain tumor. Hmmmm. I was sleepy. Whether it was the drugs they were giving me or the results of the trauma or the shock of the news for most of the day I was in and out of consciousness as I was being driven around the hospital on a stretcher for this test or that and finally being moved into a room on the Cardiac Care Unit.
A neurosurgeon, Dr. Weaver, came to visit me. He explained the tumor was small but in a bad place. He wanted to do surgery to get a sample of it for testing. For the first time in twenty years I agreed to a serious medical procedure without question or hesitancy. It was still Friday, he would operate on Monday, no, I couldn't go home in the interim. When I woke up on Saturday morning I felt fine. Seriously, fine. I couldn't believe they were going to keep me in the hospital for two days when I needed no medical care except some tests that wouldn't happen until Monday morning and medicine that could be taken orally at home. Stay I did. They wouldn't even let me get out of bed unattended. I finally convinced a night nurse to let me walk the halls of the unit with my IV pole at 4 AM on Monday. I was going stir crazy and not having any sense of the place I was in was driving me nuts. Such a funny thing how getting out of my room and gaining an understanding of my surroundings helped to ground me.

 Unless you have been on this kind of journey there is no reason why you would have any kind of understanding about it, except compassion. We can all imagine this is not something we would want to go through. We can all appreciate that someone who has routinely sought to avoid medicine of all kinds would struggle with needing drugs on an around the clock basis. Nobody wants a tumor. And I promise you nobody wants a tumor in this particular part of her brain. The surgery went well. They let me come home on Wednesday of that week and I slept almost non-stop for three days.

 Did you know that the effects of anesthesia stay in the body for 4-6 weeks and for someone with some the pre-existing issues I have that it could be 6-8 weeks? I have had some memory issues in the past week, unable to make the house alarm work properly, getting locked out of my bank account, forgetting my daughter's school i.d. number. They were all situational problems. As I sit here typing I can recall all this data now, but can't recall the name of an actor who was in a movie I have been thinking about this morning. The doctor assures me this is not due to the tumor which is not in a part of my mind that affects memory. It's not even because of the narcotics they gave me for pain (which I stopped taking as soon as I could bear to do so) but instead it is the combination of having my brain touched (which it does not like) and having the anesthesia. He assures me I'll be back to normal in about two months, total. The results came back nearly two weeks later. There are some good things. I am relatively young and in the best physical shape of my life. The tumor is small and only a grade 2. I am asymptomatic except that I could have another seizure so I am on medication for that.

 The bad news is that the tumor is in a very very bad place. No surgeon in Georgia is willing to consider operating on it. If it were somewhere else in my brain they would take it out rather easily and this would be something to watch for the future but no real risk. I wouldn't even need radiation or chemo. But it's not. Have you seen Dr. Shepherd do an awake craniotomy on Gray's Anatomy? I can remember him doing it twice so far. Turns out that's what I need and there are, in real life, only a few neurosurgeons in the world who can get the job done. That's really the bad part. They can't attack it with radiation and they want to save chemo for when the tumor gets aggressive because there are only two drug choices and tumors learn from whatever attacks them and improve their defenses accordingly. So, we wait. I will go for MRIs every 90 days, it could take years before the tumor changes, or it could have already changed and we won't know about it until we take new pictures in which case it might be too late. The biggest concern it seems is if it engulfs an artery in which case I could have a stroke. That's not a big enough concern at this point to make them want to operate.

Here's the amazing part of this (I'll bet you didn't know how special I am) my neurosurgeon has only seen a handful of cases like this. I'm the only case he's seen with such a low grade tumor. That's pretty cool. Of the handful of guys who can do this surgery, one of them, Dr Yasargil is the guy who invented the surgery I need. He invented the tools required for the job. He runs the most respected tumor program in America. In 1999 he was named Neurosurgeon of the Century. My doctor was placing a call to his office as I was leaving his practice on Friday afternoon. He hopes that Dr. Yasargil is interested enough in a young patient with a low grade tumor to want to operate. There are three programs in America that he recommends, but Yasargil's is the best and oddly the closest at the University of Arkansas. I am blessed that Dr. Weaver is committed to at least getting my case considered by this extraordinary specialist.

 If you are a praying person and are wiling to add me to your prayer list I would be grateful. I am praying four specific things. These came to me in exactly this order and yesterday I realized they deal with the body, spirit, heart and desire, in that order. The last one only occurred to me yesterday and it is my crazy, only a miracle could make it happen hope. Fortunately the guy I'm praying to doesn't find the impossible difficult.

1. The tumor will not grow or change at all before it is possible to attack it.
2. My faith will hold.
3. That I will live long enough to see my 11 year old grow up and get married.
4. That Dr. Yasargil will already have it on his mind to come to Atlanta to demonstrate his technique for the neurosurgeons here who have only seen this kind of procedure on video so far. That when he sees my case he will be eager to put his desire into action.

 I think God is pleased when we have the gall to ask for the impossible. I don't know that I'm going to get the pony I'm asking for, but if I do, I will know and every one around me will know how amazing it is. It's an opportunity to make an impact on people who don't always recognize the hand of God when it is moving in front of them.


Anonymous said...

I am Lynda's sister-in-law. My God is the God of the impossible and His Word says He is able to above what we can even ask or imagine! I am agreeing with you in prayer, believing God for what man says is impossible. I am committed to pray for you however long it takes! Many of my friends are praying for you also! Keep believing!

Love Of Quilts said...

I have high hopes that God will do what you ask...I will be praying for you.. so sorry you have to go threw this...but so glad you will be getting the help you need from the best Dr. for this...even if you have to go to Arkansas to recieve it.

Laura said...

Good Morning Danielle,

I am a friend of Trish's and learned about your prayer requests through her blog. What an amazing testimony you have...and what an amazing God we serve. Our family will be praying for you as you go through this journey...and we will also pray for the doctors that you will encounter along the way. God bless you and your sweet family.


Melanie said...

Hi, Danielle,
I found your blog while I was visiting with Trish. I'm so sorry all this has happened to you, and I will keep you and your family in my prayers!

Tammy@Beatrice Banks said...

Just learned of your story from Trish. I believe in divine miracles. Your 4 part prayer request is being added to my prayers. I'm also going to link up your story on my blog. There are a lot of praying people out there and I know they'll want to join in. May God keep you and carry you through this journey. Prayers for your family too!

Brandi said...

Hi Danielle! I'm visiting from Tammy's blog. Thank you for sharing your story. I am praying for you and your family. I wish you the all the best as you embark on this journey.

Angela said...

I came here from Trish. I've already prayed for you and I pray that the Lord will work all of this out for you.

I do believe in miracles! My cousins son Jeremy is 16 and just diagnosed with 2 brain tumors back in November. One they were able to remove and the other is in the middle of his brain where they can't take it out. He's underwent 31 treatments of radiation and will go for his MRI in 2 weeks to see if the radiation has helped. Jeremy has a strong faith in God and has from the very beginning of this life changing journey. His motto is "God has this"! I only tell you of this because God has yours too! He can do exceedingly above our expectations and I'm looking for him to move mountains for you and for Jeremy!

Hugs & Prayers!

Debby@Just Breathe said...

I am stopping over from Trish's blog. I will keep you in my prayers. ((HUGS))

Daisy said...

Danielle, You don't know me but my thoughts and prayers go out to you and your family and the Dr. who might be able to come and help you with this. You sound so positive and that will go a long way towards keeping you going. Daisy

Anonymous said...

you are in my prayers


Ann said...

I am and will be praying for you, your family and the doctors.
Visiting from Tammy's blog, Beatrice Banks.