Wednesday, February 27, 2013

Hello, Arizona

We have arrived :)  A part from yesterday's frustration from having to travel so slow on a highway due to the road condition from the previous night, this trip has been nothing but wonderful.  Jay and I truly never spent this much time together, alone, before. :) hahaha  We are home bodies. We like being at home, with our kids, and enjoy regular life.  We very rarely feel the need to go out on a date or "get away". We talk about everything and anything, all the time, so we really dont need time alone to be "close", but spending this much time, in a car, with music or without, with conversation or silence, was so pleasant :)

My last post was about conflicting opinions.  Last week was so very stressful for me for more than one reason. First, I got a surgery date, which made everything so much more real.  Second, I was having major problem sleeping/breathing/swallowing, spent 2 days in the hospital with no answers, went to the ER another night, again with no answers.  I didnt care to know why I was having issues, I just wanted help.  With  my condition, i really cant afford being exhausted. It makes all my symptoms worse, rises my blood pressure (sound like a old lady uh?) and one thing leading to another for a really sick person.   I finally got some sleep without their help, and with every 10 mins of sleep (mind you, i didnt sleep in 4 days then) I got better.  

While in the hospital and ER, many, many doctors told me that the breathing and my cavernoma were not related.  I really dont care weither they are right or wrong, but my guts told me it is related. When I first went to the ER, i was convinced I was having a bleed. Just  the way i felt the week before, the way it felt then, and how horrible something "hit me" in the car on the way there.  The CT didnt show any new bleeding, but i again later found , that even a very microscopic bleed can have serious damage/symptoms when its in the brainstem, and breathing being one of them.      I know what I am made off , so being told it was anxiety related didnt bother me much at first.  Its only when they started telling me that according to my MRI, i had NEVER had a bleed.  (I was told by my neurosurgeon that I have had 2 previous bleed) Now, I can understand that they couldnt read a microscopic bleed if that is really what happened last week,  but to tell me something opposite of what I have been told and lived thru, that was frustrating. It hurts you know?!   However, one did admit "i am not a neurosurgeon, I am a neurologist.  I respect that so much more. 

Now, if it was a bleed 2 weeks ago, I will most likely find out thru Dr.Spetzler!  It will be very tempting not to write a nice long letter to Mercy Hospital and UC if this turned out to be all related and a small bleed.... I'd like to deliver it in person too, and show them my lovely head scar. I do respect Doctors, i really do... but it was very painful to go thru this experience, right around the time my life changing surgery was being scheduled.   They just need to understand that sometimes, patients with a very rare condition actually do know about their conditions, and they are not tryign to be smart asses by telling you what they think is wrong with them... they just need help!!  

Tomorrow is my pre op at Barrow.  I will also meet with Dr.Spetzler and have a MRI. I am having my MRI after i meet with the surgeon, so I dont know how I am going to find out his readings... but I am sure I will have answers to my questions sooner or later, and franckly at this point, it doesnt matter anymore :)  

It was so hard to hug the kids goodbye on Sunday before we left.  I have no doubts in my mind that I will see them again, no matter how risky this surgery is, I will see them again. It was hard because I had never left them before... and I know how difficult this is for them. Its hard enough that they are worried about me...
Friends have been amazing tho and really coming together to make sure the kids are kept busy and that all their activities like Boyscouts, Girlscouts, Dance class, Sewing class... are taken care of.  I so appreciate that...! 

Throughout all this, I met an amazing young woman, Christine, who also had a brainstem cavernous malformation. She didnt know she had one until she needed emergency brain surgery!  She had surgery a year ago and still recovering, but she is doing amazing now (and just got married!)  and is such a inspiration to me.  I found her blog and was so excited because i have been looking for months for a blog, someone i could ask questions/ talk to, and finally found her maybe 3 days before my hospital stay!  Here is a link to her blog:  

I also met 2 guys who also had the same surgery done, both from Dr.Spetzler.  They both called me when I was in the hospital to strongly encourage me to have the surgery.  I knew in the end, the surgery was the safest, better option, but I was still hesitant.  The 3 of them really helped me feel a lot more confident and believe in a positive outcome :)

Akiva's blog: Ipatch Man

An article about Peter 

I also came across this amazing story/video on the Barrow Facebook page.  Another very encouraging story!

I am staying positive and confident as much as I can.  I truly do not want to have any fears on friday when I am wheeled into that surgery room... I want to go to sleep happy and ready.  There is no telling how long I could of had before another bleed, but not being to predict that, let alone predict how bad, totally disabling, or deadly it could be, at any time... I know how blessed I am to  have this surgeon, adn the prospect of a future where I wont have to worry about dropping dead at any given moment!  

There are so many things that are showing me the hand of God in all this. Meeting Christine, so many other little things falling into place.  Just to have such amazing friends who made sure I was to see the best, is a blessing I cant stop trying to understand.  My so very special friend Melissa found Dr.Spetzler for me, thru research and just reading around the internet. Once we had his name, I just mentionned him to another wonderful friend called Melissa, and a few hours later, she called me to let me know she called his office and we were to send my scans there the next day. hahaha

Financially, I dont know how much this is going to affect us yet... This is a
125 000$  surgery and we have the most amazing insurance, but we truly dont even know yet how this is going to affect us.  I will most likely be flying home, and all the other expenses associated with this, I know, will hit home soon enough. It makes me feel guilty.. but i know my family doesnt see it that way.  I am confident that God will not let us starve or lose our home. We probably will have to sell a car, but things will work out im sure.

I am not sure I will be writing before surgery. If i do, it will be quick. I have been keeping family and friends updated thru a facebook page I created so Jay can update everyone when I cant.   You dont have to be my friend on facebook to like or just follow the page. Its such a quick way to keep you updated.

That Brain Fart facebook page.

Well, I will go and enjoy this fabulous Arizona scenery! This is my last day before being prepped and made new :)  Tomorrow will be a busy day at Barrow, and I have to be at the hospital Friday morning at 7am. Surgery is at 9am.

I love you all and appreciate your thoughts and prayers so so so much!!!


  1. Hi Lisa,

    It was such speaking with you today on the phone for the first time. I forgot to mention, you have such a lovely accent! Like I said, I am just so happy that you've made it to Arizona and you're in the best care possible. I have every faith that you're going to kick butt on Friday!
    I have a blog post written up about you that I will post tomorrow morning. Please be on the look out for that. :)
    I think it's so wonderful that you've decided to share your story with the world! Blogging really helps. Trust me, it saved my life when I was stuck inside and unable to do much of anything during my recovery.. Hehe!

    Talk to you soon! Keep us updated!

    -- Christine @


      --- sorry about that! lol oops!

  2. My beloved Lisanne
    i just startedto cry.iamso happy for u(its sounds wired but iwish i couldhave been in yourplace right now even though its scary).i thought of u allthis week but couldnt reachout. my days are really bad and aregoing tobe even worse (got some more bad nesw...but i know that ev eerything is going to go are in very goood hands and your optimism,support from family andfriends will help u to gain yourself back.i believe in u. you are an amazing strong,positive and happy person...and itsyour birthday (at least in israel since its allmost 3:00am) and its a go od sign.
    i wish i coulsgive u ahug right now and tell u that in person.
    yoo have a chance for a beautiful life and fromthe little i came to k now u you are goin to grab this chance and become healthy.
    love u <3
    sendi ng many kisses andcrossing my fingers for u.
    we willtalk soon(i can feel it)...
    so happy got thebest gift ever.
    may thiswill be the begining of awonderful year f or u

  3. Shira,
    please tell me how you are doing!!
    I think about you so much and I love you too. You mean a lot to me!