Wednesday, February 27, 2013

Hello, Arizona

We have arrived :)

I am here in Arizona to have brainstem surgry to remove the brain tumor/cavernoma.   The past week have been incredibly challenging.  I am still struggling to walk and pretty much do anything, but it is time to risk it all. 

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. I have to think this way.  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

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. 

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!!!

Friday, February 8, 2013

Neurosurgeons "gods"

Dr.Robert Spetlzer
Barrow Neurological Center
Phoenix, AZ

These 2 doctors I am going to see are basically so talented at what they do that they are both considered among the best in the entire world.  Dr. Spetzler (pictured) grew up in Germany, and Dr. Lanzino in Italy, but they both came to the United States to specialize in Brainstem conditions and surgery after their basic medical training.  I first heard from Dr. Spetzler; he is the one that offered a surgery as soon as i want it; caught me off guard as I have been told for almost a year now that this was inoperable.  He practices at the Barrow Institute, In Arizona.   I am going to see Dr. Lanzino on March 6th, at the Mayo Clinic, in Minnesota. 

(update: I didnt get to see Dr.Lanzino, as I ended up in the hospital February 18th and traveled to Arizona to have surgery by Dr.Spetzler March 1st: Read here) 

Dr. Giuseppe Lanzino
The Mayo Clinic
Rochester, MN
Oh, what is funny, is that Dr. Spetzler is considered the best in the country regarding my condition but Dr. Lanzino studied with him in Arizona and then moved to Minnesota, and they wrote  book together!! So cool!   I am so curious to see if they both agree that i need / can have the operation. If Dr. Lanzino agrees with Dr. Spetzler…. I think that will just confirm that this is the best decision…. why would the 2 best surgeons suggest it as a good option if its not a good idea? 

I grew up in the middle of nowhere. You can see my house there. It is the third one among those 5 that you can see.  This town is in the middle of miles and miles of forest, from all directions. We HAD to drive long distance for everything.   Driving to get things done is not a big deal for me.  I know some people who would simply say “oh, i dont have any specialists near me, there is nothing that can be done for me” so….. go find them?     Unless you are suicidal, why wouldn’t you drive for 12-20 hours? You dont HAVE to fly if money is an issue!  Unless its 4 days drive away, with gas price, you may as well take the plane. But at least, GO.
Kedgwick, NB

Thursday, February 7, 2013


Exactly 6 months ago, on July 17,  I blogged this:

“However, I am staying positive, because there are no uses for me to live my life always wondering when this will happen.   He told me that at some point, I will have to make this very difficult decision… wait for something catastrophic to happen, or operate now and risk now.   Not the kind of decision anybody wants to take.”

This “point” has arrived.  At least from one very skilled neurosurgeon. I was getting used to being told to just go home! Being told that surgery is an option and that I have a choice to make is a whole new ball game for me now… I have to make that decision.  It is so hard to choose…. Im no ready!  I guess I never would be ready to choose… but I think seeing another very qualified neurosurgeon at Mayo Clinic on March 6 will give me more confidence/facts/confirmation etc.

Saturday, February 2, 2013

Mayo, Hopkins and Barrow

I had a MRI follow up about 2 weeks ago.  Its very normal for the cavernoma to be empty before it fills up with blood again.  I have good days, and bad, then a good week, followed by 2 bad weeks.  I thought maybe it was getting worse, or was bleeding again, but I guess it is just the joy of having what I guess i can call “brain damage”. hahaha   The list of weird symptoms is so long, i will spare it….  Some of them are silly, some are scary, some are “oh well”, but most of them are very frustrating… both physically and mentally, but the mental symptoms are what is bothering me the most.  Its hard to not feel in control of yourself. However, I do believe I have a very strong control of “myself” despite some really bad days.  I work really, really hard to fight those symptoms.

Lately, I have been struggling with the realization that its not because I accept other people at their worse that they accept me at mine.  I thought it was pretty natural for most caring human being to do that, but I was wrong.  I will always have the same soul, the same heart… that people seem to like…. so why not accept all of me when this girl is not doing good.  I really cant say that from a lot of people. My true friends and family have been patient with me, and i also learned to stop being so strong all the darn time…. i am so used to just push myself to every limit, stay positive and move on, that when i do feel really sick, which is very often, nobody knows. I think its mostly good that im like that… but bad in the way that even the people the closest to me have no ideas how hard simple tasks can be for me.

I have also come to realize that I have amazing friends.  Within 2 days, 3 of my friends, mind you they dont know each other, have  arranged for me to see 3 of the best neurosurgeons/neurology center in the country.   First , the Mayo Clinic, In Minnesota. My appointment is March 6.  Second, Dr. Speltzer, at Barrow Neurology center; he is known to be one of the , if not THE best neurosurgeon in the world. Third, a neurosurgeon at Hopkins, Maryland.  I dont know who is going to view my Scans there, but all those opinions wont hurt.
When I saw my neurosurgeon 2 weeks ago, he was mostly positive. I just felt like he is not saying much.  He first told me things looked good, then said “if it bleeds again, i will try to convince you to do surgery”. He never said surgery was an option before. He actually said it was inoperable. I just felt like there was something he was not telling me. I later found out that “calm” cavernoma is very normal right after a bleed, and a lot of time, it only means it will bleed again soon enough. Anyway, I still take it on the positive side.  Of course i hope i never have to think of choosing to go thru with brain surgery.

I seriously dont know if i’ll have the support I need.  People mean well, but I always felt pretty invisible when I was in need.  Might as well go live in a cave by myself.  I guess I am not the type of person people are eager to “serve”, even when in need.  Probably because im usually the servant and ironically enjoy doing so. I never get burdened when friends need help. I am very happy to help and never think twice about it.  I think my problem is not that i dont have support, is because i dont ask. hahaha

I guess im feeling down tonight uh?!  Oh well, cant be perfect
I am excited to know more about this. I feel like i’ll be able to move on better.  I dont wake up thinking of all this, and I dont go to sleep thinking about this, but lately, the thought of surgery scare me some.  There are so many things that can go wrong in a  brain stem surgery…. its ridiculous.  Anything can happen, Anything! Its scary…. BUT, i dont stay scared long. I chose not to go there.

Did I tell you I lost 27 pounds?  I did, and im really happy… I feel so much better about myself.  Now, Jay keeps telling me , jokingly, that im too skinny.  He doesn’t realize it, but it makes me insecure… haha I want to please him, and he used to joke about me being chubby, and now im too skinny… am i ever going to be just right?

Anyhow, I am so so blessed to have friends that cared enough about me to inquire for me…. it really shows you who really care about you. Who thinks you are worth the effort and time!  I am blessed to have them.  Not a lot of people have the chance to get 3 specialists opinions like I will be getting.