What you don’t see

I have been told numerous times how good I look.  I walk without my cane; for the most part, so I must be much better.  My speech has improved so I must be awesome!  Somebody asked me yesterday how I am and wanted the truth and not the generic “I’m fine”.  She then told me I should share to show where God has brought me to and where He continues to take me.

 

1 Peter 2:24 (NIV)

 “He himself bore our sins” in his body on the cross, so that we might die to sins and live for righteousness; “by his wounds you have been healed.”

Day to day life after surgery is different for everybody and even if you have an identical surgery things can be very different.  Here is my day to day life after having a craniotomy for cavernous malformations:

~  Nausea – I have medications for this, but there are some days it is horrible.  I am unsure if this has improved because the medication helps so much.
~ Ice pick headaches – off and on I get these headaches that feel like you have stabbed me in the head with an ice pick and a few seconds later pull it back out.  These headaches are extremely painful, but thankfully only last a short time.
~ Pressure headaches – these are different than the ice pick; with these it feels as if something is pressing against my head for an unlimited amount of time and not as severe as the ice pick.  These headaches can last for a couple of hours or an entire day.
~ Numbness – wow – this one is entertaining.  Around the surgery site it is still numb, but I’m getting some feeling.  At the edges of the numbness it is very painful.  The numb places will itch, but I can’t feel to scratch, so it drives me crazy.
~ Left side insanity – my left side hurts, is numb, shoots pain, feels weak, and is sensitive to the wind against my skin, and on and on.   This is the side that had been paralyzed briefly after the surgery.
~ Lump on back of head – it is not a literal lump, but that’s what it feels like.  I feel like I have something huge attached to the back of my head at the incision site.  It bothers me to lean my head against anything or to lie down at night.
~ Stiffness in arm and leg – My left arm and leg will become completely rigid, usually in my sleep.  The muscles are so tight that it hurts to the point the pain wakes me up.  Sometimes I wake Mike up if I hit him depending on how I’m laying.  I find this much funnier than he does.  Also, sometimes when I yawn or stretch it will make my arm and leg rigid.
~ Apraxia – this is newly diagnosed – Apraxia is the inability to execute learned purposeful movements, despite having the desire and the physical capacity to perform the movements.  An example would be:  I want to reach out for something, but I can’t just do that.  I have to almost tell my body step by step – move shoulder, straighten elbow, open hand, etc.
~ Exhaustion – I started to write tired, but that’s not the correct word.  They told me in the hospital that I would be tired and need extra sleep and they were right.  Simple things like taking a shower are exhausting to me and I almost need a nap from that.  Even something like sitting in church is tiring and requires a nap.
~ Pain in head when laying down – when I lay the back of my head against anything it hurts.  I have to take pain medicine to sleep at night.
~ Forgetful – Mike added this one.  If I’m forgetful I don’t remember it!!
~ Freakish sound sensitivity – in my right ear my hearing for high pitched sounds is insane.  I heard a sound in Alabama that people kept saying I could not hear; but it was hurting my head.  Mike could hear it and then somebody else that had a stroke heard it and asked what that horrible sound is.  Maybe the strokes affected our hearing, but it made me feel better because I know what I heard and now somebody else did too.
~ Speech / tongue – my tongue is very weak and that is why my speech is messed up.  The right side of my tongue cannot hold the correct placement for my words to be correct.
~ Balance – My balance is still off and I still have some problems with dizziness.  I do not use my cane all the time, but I do take my rollator if I know there is a lot of walking. I stumble now even when standing still.
~ Confusion – when I am in a group with lots of different conversations or background noise I have a hard time concentrating.  I cannot play computer games and talk on the phone like I use to either.  Anything that requires me to focus on more than one thing is very difficult.  I will usually stop talking in these situations and just pretend to pay attention.
~ Weakness in left wrist and ankle – I sleep in a brace that supports my hand and goes to my elbow and wear a foot brace that supports my foot and goes to almost my knee.  When I take these braces off I feel very weak.  My wrist hurts to push a buggy (cart) around the store or to lean on it.  It is painful to get up and walk without the brace, but I have been told to not wear it all the time.
~ Missing things – I really hate this the most.  I miss things all the time and it makes me feel so unreliable.  I have had to miss things Mike and I really wanted to do because of any of the above things or a combination of things.

People have pressured me since 2009 when I was first diagnosed to have surgery.  I have said repeatedly the best thing to do is watch and wait because we don’t know what side effects surgery could cause. I am very blessed that things are as good as they are for me. 

1 Thessalonians 5:16-18 (NLT)
Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.

Since I decided to write this several people have asked me to.  I am not whining when I write this or asking for pity.  Our bodies are amazing and the way we heal is awesome!!  God has been with me through every step of this journey and placed some wonderful people to help me.  Even when I get upset and have small pity parties I know that God is with me and I start to praise Him again!!

Blogging again!!

I am so glad that I am home and able to blog again!!  The past couple of months has been very entertaining and has had many ups and downs, but that’s ok because I’m heading in the right direction!

I want to say a HUGE thank you to Dad and Judy for letting us live with them for two months and for driving me to therapy.  I know it was not easy having us in your home for so long, but we really appreciate it.  We will miss all the wonderful food we enjoyed while we were at your house.  Mike says thank you for lending him the drawing tools so that he could continue doing something that he loves.

Thank you to Trinity United Methodist Church for making us feel so welcome.  You all made us feel so welcome and part of the family and that meant a great deal to us.  Thank you to Ron’s Sunday school class!  You all were so sweet to us and made us feel right at home.  We were curious about attending a different church and how it would be, but thanks to all of you for making it such a good experience!!

Thank you to those who came to visit Mike and me!  We had some wonderful visitors who made us laugh and enjoy ourselves.  It was nice to see the different people and to think of all the different ways we met and how our lives have grown. 

Thank you to our home church, First Assembly of God in Jefferson for remembering us in prayer!  We received daily messages from two of the sweetest girls telling us about you guys and keeping us entertained!  Thank you for your calls and texts letting us know that you were thinking of us.

Thank you so much to Kevin and Marisa for driving us home.  You guys went so far out of your way – literally – to help us and that meant so much to both of us.  We had a lot of fun talking on the ride home.  We will never forget Marisa’s reaction to the winding mountain roads either!

UNIQUELY MADE

Hello all - long time, no blog!! I am typing one handed, so please excuse any and all typos.

I am three weeks post op and life is interesting and full of surprises and challenges.

2 Corinthians 12:9 (NIV) But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

Do you want to talk about weak? We are all weak in one way or another, and I wonder how many times we do not want to admit our weaknesses. During my OT, my therapist, Allison, kept telling me “you got this; I know you can do it!” She was my cheerleader, she pushed me and challenged me and God is doing the same thing! This entire journey He has been telling me “you got this; I know you can do this!” Do you want to know a secret? He knows I can do it because He has my back. His power is resting on me through my weaknesses as long as I trust in Him and lean on Him.

At church yesterday, Brother Ken kept telling us that we are all uniquely made. I can’t remember what verse he used (one of the problems with brain surgery), but he is right. Could you imagine two of you running around? I would not want two of me running around – I talk too much by myself, I would hate for two of me to be talking peoples ears off. From what I understood, part of us being uniquely made is that we are all given unique gifts. We all like gifts and we all have one that is specifically for us and nobody else.

During this brain surgery journey some have talked about how positive I am. Now, I have no idea what my gift is and I definitely don’t know if being positive is a gift or not, but it has helped others. This makes me wonder that if every one of us just once a day bit our tongue and said something positive instead of that negative thing that popped up could we change our world? Our life? The life of the person you are talking to? Your church? It is so easy to be negative, but sometimes we have to think about being positive; don’t you wish it were the other way around? What if when we are on Facebook we shared the positive things and not all the negative? What if we shared the prayer requests instead of the gossip? What if we shared God instead of the world?

Here is a positive thought to leave you with – you are all beautiful, made in God’s image and uniquely made!! Brother Ken said “God has given you a gift – use it”!

Life changing

What would you do if you were going through a life changing situation?  What would you change?  Who would you talk to?  If you knew that something was going to happen next year, next month, next week or tomorrow what would you do?

My surgery is in one week and I keep thinking about these things.  My surgery is life changing even if nothing about me physically or emotionally changes!  I feel like I have really been thinking about what I would change!  One of the biggest changes I have noticed is that I feel closer to God because I am praying so much more than ever before.  I am talking to Him about the surgery, about my dog, about going to Wal-Mart, I just keep talking to Him about everything.  I hope this does not change after surgery and that it is not one of those attempts people make when you know something is coming!

     Proverbs 27:1 (NIV) Do not boast about tomorrow, for you do not know what a day may bring.

This verse is so true for me right now it is not even funny!!  

In one week I am having brain surgery.  Do you have any idea how many times per day this goes through my mind?  I have definitely asked the questions: am I bad enough that I really need this; is my family really alright with me staying at their house while I heal, I was just there in December; is Mike going to be alright if I look bad after surgery; is Dad going to be ok; questions, questions, questions!  I am sure this is normal, but I just keep asking them and praying!  My prayers are being answered!!  I know because even with all of my questions, I am calm and not worried.  I feel comfortable and content.

We have rearranged the house and are starting to pack.  I would rather prepare for the worst and not need it, then think everything will be perfect and it is not and things are not ready.  It may sound crazy to do these things, but if I have problems then I won’t be able to do these things after the surgery. 

I thought a week out might be a good time to give some information to my family and friends.  Some of this will be directed towards the people who are physically with me in Phoenix, but I thought it would be good information for my prayer warriors to have to maybe give some ideas on things to pray for!!

There is a website called AngiomaAlliance.org that has some wonderful information about my condition.  They already have pages set up to help give ideas and support to patients and family members:

Caregiver Information - - for Mike, Dad, Rebecca, and Judy
http://www.angiomaalliance.org/pages.aspx?content=79&id=69#.UxiBIvmwJ2M

It’s not about you – it’s about Him

A week or so ago I saw a post by a woman whose husband had surgery and was on an emotional roller coaster which means she was also on the same ride.  People were giving her different advice and trying to cheer her up when one person commented – it’s not about your right now it’s about him.  I kept thinking about that and you know, I have decided that woman is partly right.  It’s not about you – it’s about Him.  It’s not about me, it’s about Him!  I hope you caught that – Him = God!!

My body is rebelling against me and making me have strange behaviors and strange speech, but how can I use that for Him?  I could fall on the ground and curl up in a ball and cry and beg non-stop to be perfect again . . . but that would not serve Him.  I could call everybody and tell them how pitiful I am and how my life is not worth living . . . but that would not serve Him.  So what can I do – how can He use me.

Luke 22:27 (NIV) For who is greater, the one who is at the table or the one who serves? Is it not the one who is at the table? But I am among you as one who serves.

Well, I can do that.  I can serve! 

Did you know...

- Abraham was too old
- Sarah laughed at God’s promises and was also too old.
- Moses stuttered and questioned God's judgment in picking him. He killed a man.
- David’s armor didn’t fit and was too young. He also killed a man & had an affair.
- Hosea’s wife was a prostitute.
- Amos’ only training was in the school of fig-tree pruning.
- Jacob was a liar.
- Lazarus was dead.
- John was self-righteous.
- The Apostle Paul spent his early life murdering Christians.
- Jeremiah was depressed & suicidal.
- Samson didn't wear a suit and had long hair.
- Noah got drunk.

- See more at: http://mikelfrench.org/blog/flaws-of-famous-bible-characters/#sthash.MwsvkCRC.dpuf

God used imperfect people so many times throughout the Bible because they were willing to serve others and to serve Him.  That is my plan – serve God every day; it will probably never be something grand in the eyes of man, but I believe that it will be to God for the willingness!

Who will you serve today?  Who can you help?  Motivate?  Encourage?  How can you show that it is not about you, it is about Him?

Call confirming surgery

Several people have asked me what the doctor said when he called to confirm the surgery.  I recorded the phone call so I would not have problems remembering it and typed up exactly what he said:

Dr. Hardesty Call confirming surgery

We agree that there is a small cavernous malformation in that front part of where your brainstem meets your spinal cord at the cervical medullary junction.  It is a difficult location to get to surgically, but it is surgically accessible.  Dr. Spetzler’s recommendation to you was that it really depends on your symptoms and your level of botherness, how much it bothers you.  If you want to go through with the surgery that’s reasonably invasive, but provides a good chance of getting that cavernous malformation out, we would be willing to offer that to you.

I mentioned that my current neurosurgeon said that I am in a lose/lose situation and continuing to get worse.  The Dr’s response:  We agree, if you are continuing to get worse I think it should probably come out. 

The way we would get there is, the lesion is on the right side just barely, but we would do an approach on the lateral side on the left to get the angle just right to get there. Because if we came on the right side we would have to kind of reach around and so we would actually recommend a left sided, what’s called a far lateral approach.  That’s a craniotomy at the base of the skull on the left side where we take off some of the bone, open up the lining, the dura, and then head towards the cav mal and take it out.  The only thing is that at times we have to take off enough bone that it destabilizes the area between the skull and the spine.  And at times people do require fusion later in life after this kind of procedure.  But we wouldn’t anticipate you needing it at the time of the initial procedure.  But the hope would be to not take off enough bone to cause instability.  This is just a warning.

I asked what is fusion:  that would be putting little screws and rod between the bones of the skull and the neck, kind of like a brace inside.  That would reduce your neck mobility a little bit in terms of nodding yes and no, but not totally.  Again, that is not an upfront thing that is something down the line that might have to happen.   

I asked that I have heard that a lot of time the symptoms you go into surgery with often get worse with surgery:  yes, that is something we warn everybody with a brainstem malformation about.  Over the first couple of days, usually the first three days, you can have some worsening of your symptoms because of the swelling around the area of surgery.  That does not mean that they are permanent by any means, but you can imagine that the normal tissue around where we operate gets kind of irritated that can cause some symptoms for at least a little while.  However, that does get better quickly. 

I asked what new deficits the surgery could potentially cause:  very similar to what would happen from a bleeding episode.  So sensory changes, weakness on the side of the body, perhaps worsening problems with your speech, or with your tongue function, or with your swallowing function, but overall I think the chances of any of that happening are relatively low.  I am betting that if Dr. Spetzler were to see you in clinic and quote you a number he would say you have probably between an 85 and 90% of getting by with no new permanent deficits at all.  

I asked when I can put my contacts back in (I hate my glasses):  in recovery as soon as I feel like it.

Every day that you don’t have surgery is a day you could have a bleeding episode even if it is unlikely. 

If you are from out of state, you fly in and get seen by us in clinic, you also get a new MRI and that MRI is used at the time of surgery for our navigation system – that’s kind of day one.  You go back to your hotel and then the next day or maybe the day after that depending on the timing, you come in early in the morning and that is when you are admitted for surgery and you have surgery that day.  It is sort of an all in one process; it all gets taken care of within a couple of days. 

I asked about Mike staying with me:  When people are in the ICU or on the hospital floor there is a couch in the back of every room and family members are welcome to stay 24/7, at least one of them.  It can be anyone important to me; they do not have to be family.  After 9 or 10 pm it is just one person, but during the day as many people as can fit in the room are fine. 

I think we can do you some good and get this out. There is no guarantee that your symptoms will improve, but certainly we can prevent them from getting worse.  But there is always a chance for recovery as well especially since things have been getting worse recently and not over those last five years there is always potential for recovery in someone who is young as well.

You come in and have your pre-op and surgery the next day, so that is two days right there.  You stay in the ICU overnight, that’s another day, maybe two days depending on how fast you are waking up and everything.  Most people will leave the hospital by a week after surgery.  I tell people to plan on being in the Phoenix area for seven to ten days.  Obviously if you were to have a new deficit after surgery or need rehab or there was a complication, God forbid (yes he said that), that would put you here longer. 

I asked how much assistance I would need when I go home:  I anticipate you would not need much more than you already do.  Again, unless you were to have some new permanent or temporary neurologic deficit and in that case you would probably go to rehab, until you are at that baseline level again.  Most people get back to their normal lives pretty quick.

He does recommend going to dad’s house after surgery for the help they can give me and Mike.

March 14th we are EVICTING Damian!! 

Mike’s Perspective . . .

There is a woman whose husband has had brain surgery earlier this week and she is having a hard time emotionally right now.  I asked Mike to write to her from a caregiver’s standpoint and I liked what he wrote so much I thought I would share it as today’s blog . . .

Life with someone who has a Cavernoma is not normal. You learn quickly that everything is different now. Your other half cannot do like they use to. You have to keep in your mind that they want to do everything they did before. Now though they have a health problem slowing them down. Today they might be at fifty percent of their normal energy. While tomorrow it could be more or less energy. So you cannot really plan anything due to what will tomorrow bring, but you want to give them the best in life. When they wake up with a bad day you spend time wrestling with what to do today. You know they will want to go on today like every other day. So I have to remind them that you need to take it easy for their own health. How they respond can change many times through the day. You might get a happy response then an angry one next time. So patience is a key. Keeping in mind how they are feeling at that time. They can be depressed or not feeling good.

Knowing that they will see later on how they responded. When they do it breeds fear. Fear that they will ruin your feelings for them. To the point that you will want to leave them. Understanding that your feelings are not based on how they react all day every day.  So you have to reassure them you have not changed your feelings for them.

The physical problems are a unique experience. You get days where they may not be noticeable then there's bad days. On the bad days you may be a caregiver. This can range from steadying as they walk to trying to convince them to stay seated while you do everything in the home. If you are like me you enjoy being the caregiver when all of your life it was the opposite. Being in a wheelchair I have wanted to be independent so I understand the feeling of I do not want help. Even though you see the one you love and want to do everything to help them. It has ranged from hurrying to keep them from falling to getting things off the bottom shelf at the store. Learning the triggers to problems is a constant thing that can change. Like bending over makes you dizzy to certain sounds that trigger the effects. Yes your life may never be the same, but you see that they are more important than wasting money on movies. To me my other half is the most important thing. Wasting money on things that are triggers is not important to me. Making sure that they are safe and not put in the wrong situation is. I try to find ways to keep life interesting. Because you cannot live a life in fear of everything. Sitting at home scared is not a life. If you are adaptive you can see things like a simple walk can be enjoyable.

So you deal with the times where they are not feeling good or happy. I do not want a happy go lucky life where it gets boring. A challenging life can be more fun. So no matter what mental or physical situation she is in you need to realize what they are going through. Do not stress out. Keep in mind how would you react if you were them. You might act a whole lot worse to your loved ones then they do.