Friday, April 17, 2009

My Cousin In Law....

I sent several of you a text message last week regarding my cousin in law Christi. I wanted to post the email that she sent out after she was able to leave the hospital for a few days. I am not the best to speak medically. And I think this email explains everything perfectly, including specific things that she mentions to pray about it!

I would like to think that if we discovered a brain tumor over 1/6th of my brain that my attitude would remain positive, much like Christi's. In a more recent email she sent, this is how she ended it....

so many people have praised me for my attitude though this whole thing and (even though you probably already know this!) I just want to say, it's not me. God has been SO good. He has given us SUCH a peace. I am confident that I will be here April 21st because of HIM... and if I'm not then I am confident of where I am going because of the saving blood of Jesus Christ. Nothing Compares!!

Sheila is my older sister by 18 months. Now my best friend, we lived as rivals most of our lives not understanding each other's opposite brained thought processes. We discovered Sheila's inoperable tumor when I was 11. The Dr./nurse just came out and told my mom and sister at the same time "Good news, bad news... the good news is there is no brain hemorrhaging but the bad news is that we found a mass and need to do more tests." My poor mom heard the news at the same time as my 12 year old sister - not good... they were both scared and rightfully so. It was a scary and trying time for our family which brought about and answered many questions on tumors, brain functions, and every modern neurological practice 1994 had to offer. For those of you who don't know her, Sheila has migraines and no peripheral vision in her left eye, but apart from that leads a relatively normal life... relatively ;). Since that time I have always wondered, "What if I had one too". It's a thought that you just write off as hypochondria... but still I thought it had merit... turns out I thought right.

On the week of March 28th I started having headaches. By the 1st I was having two thirty minute migraines a day - each would bring me to tears for a short time and then slowly subside. With them came alterations of my vision (weird warp-circle swirls and just general dizziness). Not something I wish to experience again anytime soon. I hypothesized that the headaches were due to the exclusive liquid diet of crystal light-style drinks (as in I only drank about 6 decaf peach tea mix-ins a day and nothing else). It made sense!! That's a LOT of tea and those things have all kinds of artificial sweetener in them. I've had headaches from caffeine before so maybe I was sensitive to another substance as well...

I went cold turkey on the mix-ins Friday April 3rd and only had one migraine that day... on Saturday my headaches seemed to improve even more. I was so proud of figuring out my headaches!! Yeeeeaaah.

Sunday I couldn't get out of bed. I slept all day and could barely even eat (definitely abnormal) by this time Adam had told me several times that I should go see a Dr. We both thought I was improving on Saturday but Sunday it was obvious (to Adam at least) that something was way wrong... it wasn't obvious to me because... well... I was asleep... and kinda out of it. I remember waking up and asking for food... Adam brought it in and I thought it smelled gross. I immediately asked him to take it out (frozen meal... luckily he didn't have to put forth too much effort :) poor guy!) Then I slept some more. At about 7pm I decided I needed to use the restroom. I remember thinking "This is going to hurt my head... just get up and get there as fast as you can... do it... then you can go back to bed" Luckily I was cognitive enough to call Adam in the room to open the door for me... he ended up needing to do more that that.

According to Adam I looked 20 times more drunk than the more inebriated person he's ever seen.... sad. I barely made it to the door I was walking so crocked. Funny thing is I was yelling at Adam to get out of my way the whole time... even when I'm half unconscious I'm still bossy!! It makes me proud!! :) Apparently I made it to the bathroom but Adam had to brace me to help me sit. After a few minutes I stopped responding to him and that's when it got scary... and a little funny... Adam laid me on the floor, ran to get his phone to call 911 and all the time he's being yelled at by Cailyn (who was gated into the living room) "MORE CACK-ERS!" ...ummm, Sorry, Cailyn. Crackers had to wait... Adam finally got his phone and called 911. He told the ENT that his wife was unconscious, which (of course) was the exact time that I decided to respond by yelling back "I'M NOT UNCONSCIOUS!" (haha!! Yeeeeah... I don't remember any of this.) So he said something like "Ok maybe she's not, but she wasn't responding a minute ago and I think we need an ambulance."

An ambulance showed up (again I have very few memories... none about the ambulance) and Adam's fairly certain that an ENT came up to him and asked, "So, do you always call 911 when your wife has a headache?" Luckily this is NOT the attitude of the normal Portlander so I guess we'll let it slide...

I remember the emergency room check-in guy... he wouldn't let me lay down and all I wanted to do was lay down. He also jammed the thermometer in my mouth so hard it hurt... he was hyper... and had really really big sideburns. After he checked me into the emergency room, I went in for a CAT scan. They discovered the tumor and decided to do emergency brain surgery that night to drain the blocked spinal fluid (poor Adam!!). Adam listened to the Dr.s and was basically told "this is your only option" so he took it. When they told me about the tumor I remember thinking "Aren't they supposed to tell my mom and dad about this without me in the room... this is too scary for someone so young to hear..." then I realized that I am an adult and that my mom and dad were not there to be told in advance. It was a little sobering... and should tell you about my mental state at the time... I was still REALLY out of it!!

I also remember telling Adam to "wait" all night... wait until we know something to tell the parents. When we found out it was a tumor I told Adam that we could finally call them. I thankfully remember telling my mom "There's no easy way to say this, but I have a brain tumor... I'm going into some surgery now so I have to go." That's really something a daughter should remember... you know? :) Hopefully Adam filled her in on what surgery I was going into... I'm not sure that I knew at the time...

I remember the anesthesiologist, I remember the lights. I remember talking about DeeDee (my maternal grandmother who passed away in 2003... she was the nurse to the anesthesiologist... thus the conversation) and then nothing. Somewhere in there I remember changing clothes as well from one PJs to another... I don't remember changing into the hospital gown...

When I came out of surgery I apparently had a long conversation with my nurse... don't remember it at all... but I do remember feeling GREAT!! The headaches were finally gone!

I got to my room well past midnight and do remember using Facebook on my iPhone that whole night... after sleeping all day Sunday and being a bit wired from my new health news I really wasn't going to sleep that night. Also, the surgery diverted my excess spinal fluid to a tube that exited the right side of my head... kinda awkward... we called it my brain drain. In medicine it's called a ventriculostomy and it measures cerebral pressure as well as drain the fluid. The tube had to be level with the bag... they actually used a giant carpenters level on my head several times a day... the more humane nurses had a string level... I definitely preferred the string level...

I had my MRI on Monday or Tuesday of that week... it was probably Monday because I'm fairly certain that I met Dr. Gore on Tuesday. Dr. Gore is awesome. He's young, but not too young; he's Indian (yes, I am racist in a good way. Indian doctors are good doctors!); and he does brain tumor removals several times each week.... definitely the guy you want poking around in your head.

So Dr. Gore went over my MRI with me and Adam... I've got to say, I was shocked at how big this thing is. From the MRI it looked like the tumor was taking up a good quarter of my brain. In reality it's taking up 1/6th... still a good chunk. Due to the massive size of the tumor they think it's been around for a LONG time - birth maybe - and it's been growing very slowly. The Dr. said that had it been growing fast I would be dead by now or I would have massive brain damage. As a side note, tumors this size are nicknamed goombas, which made me happy - think the mushroom bad-guys that Mario bounces on. That is also a goomba! :)

The tumor is in my frontal lobe which is the most accessible part of the brain (good for surgery!) and from what they can tell it has straight edges and should be easy to scoop out. The Dr. does not think he will be able to remove it completely due to the size, but that which he leaves behind shouldn't be a problem assuming the tumor is benign. From the initial MRI they think the tumor is!! We'll know for sure after my surgery.

On Tuesday we were told the surgery would be that Thursday. I wasn't scared. I'm still not scared. We have felt God's hand on this SO STRONGLY!! Somewhere in there I insisted on doing an angiogram which maps out blood vessels... I think that happened on Monday as well. (Sheila has very abnormal brain blood vessels which would have been her demise had they biopsied her tumor.... better safe than sorry!) Turns out I have normal blood vessels! Yea! Something normal! :)

On Wednesday morning Dr. Gore came back into my room and said "I've been really thinking about this for the past 48 hours and I think we should do a functional MRI before surgery." Turns out the speech and language patterns are located in the frontal lobe and in all reality should have already been obstructed by my tumor. The tumor is on the left side... speech and language patterns of right handed people are usually on the left side as well... I am right handed. However, there is a good chance, due to my proficiency in talking ;), that my patterns are on my right side. There is also a chance that the tumor grew so slowly that my mind just adapted. If Dr. Gore knows where those patterns are then he knows where to be careful or he knows that he can be aggressive. Both preserve my communication abilities... ummm, I appreciate that Dr. Gore!!

Thursday I went back into surgery to get my ventriculostomy internalized into a shunt. I currently have this device in my head which redirects the spinal fluid into an abdominal cavity where it can exit via the kidneys. Everything went well and those blessed doctors even washed my hair for me while I was out. THANK YOU!!!

I was transferred to the regular wing of the hospital on Friday and went home Saturday.

Each day I feel stronger and am more willing to face this tumor head on (hehe... sorry, I cant resist a good pun!) My head feels weird with the shunt in it, but it's adjusting... I can feel the tube in my neck and the whole right side just feels heavier.

I have staples randomly placed all over my head from my 2 surgeries (makes scratching my head difficult :(.) Two of them are at my hairline and look like a widow's peak... about 5-8 are on the top right where they had that first drain. (That spot is sad looking... it was partially shaved and needs a scarf over it to look decent. Gave me a whole new appreciation for the comb-over technique!) And another 5 (ish) staples are randomly on the back of my head but totally covered up by my hair. I'm sure I'll have another 10-20 staples in me before this whole ordeal is over. They may be able to preserve the vast majority of my hair and do the surgery on my hairline. If that doesn't work out, I'll take ugly hair over a tumor any day!!

As most of you know, the surgery is now scheduled for Monday April 20th - my brother-in-law's birthday! We don't know a time yet, but I'm looking forward to it! "I can do all things through Christ who strengthens me!"

Now that I've given the back story I just have to say that there are certain things about this whole situation that just make my jaw drop!!

1.) This showed up on April 5th and Adam started working at Jive April 1st of last year... when you hit a year the paper work is easier for missing work and the insurance has no waiting periods.

2.) My family already had knowledge of brain tumors and the general procedure of things so it honestly hasn't been scary!

3.) This all happened over Easter weekend... going through passover literally feeling like the angel of death had passed by me was a cool feeling... and it will be even cooler when this tumor is 100% out!

4.) Also Easter is about death and new life. The symbolism is not lost on me. I look forward to my new tumor-free life!!

5.) There was a pregnancy scare this month and luckily it was only a scare! Adam and I are talking about trying for kid #2 in June of July... can you imagine if we had found the tumor in the fall instead of now!?

6.) We had just moved four weeks prior and are already very settled... we found this rent house early and had to have two rents for the month of March. "Ideally" we would have moved on April 1st... glad it didn't work out "ideally!"

7.) When we moved, we moved within walking distance of some DEAR friends of ours from church - Abraham and Nancy Bates. These friends have a 4 year old and a 3 year old who Cailyn LOVES. The Bates were able to take Cailyn for the first few days until family could fly into town and have continued to help out. Proximity has been a huge blessing.

8.) Being married with Cailyn at 2 is a VERY happy stage of my life. I have the best husband I could have asked for and every reason to WANT to be here with him and Cailyn. In surgeries the will to live actually makes a difference and that excites me (not that I'm worried about it :))

9.) In high school or Jr high I did not have that will... life was scary then... and my poor parents. It would have been cruel to them had we discovered it back then!! They had enough to worry about with Sheila.

10.) Adam used to work for himself which meant pretty bad health insurance for our family! Praise the Lord we didn't find this a year and a half ago!!

11.) The surgery is April 20th... I have a thing with 10/20/30. Started dating Adam August 10th, Cat's birthday was made-up as August 10th to make it easy, got Married June 10th, and then got Charlie whose birthday is April 10th. My birthday is June 20th, Cailyn's Birthday is March 20th, Adams birthday is November 30th.... 10/20/30

12) The surgery is on a Monday of the 20th... and I was born on a Monday the 20th. I know it's kooky, but it makes me smile. God knew what he was doing when he picked all this out!! (Watch... now my surgery date will get changed again - haha!! That'd be mean! :))

13.) I am the healthiest physically that I have been in years. I started running in 2008... probably fall or late summer. Since then I built up to running five days a week for an hour a day (honestly it more of a slow jog mixed with walking intervals... but it does the trick!!) Then, in January of this year I started Weight Watchers which is really just counting calories, eating less fat, and eating more fiber. EASIEST diet ever!! and I have lost 20 pounds and am continuing to lose and become even more healthy. Being healthy going into something like this makes a huge difference!!

Either way, the list goes on... I'm just in awe how perfect this timing is!!

Mom is with me now and more family is coming. I'm not allowed to lift anything over 10 pounds... which means Cailyn, but I'm hanging in there getting tons of hugs!! Jive is an AMAZING company and has given Adam at least 2 weeks off AND they gave Matt a day off for free to come visit me. Seriously Jive, you rock!!

We are just insanely blessed over here. Thank you for your prayers!! They are coveted!!


Pascha said...

WOW! that is insane! I will for sure be praying friend!

The Firestone's said...

Wow- we will pray too!
I don't know who Henry looks like?? Everyone says something different :)

The Austins said...

We will certainly be praying for her! I admire her positive attitude.
Hope you get a miracle blanket soon. I think it makes a huge difference, but it may not work with all babies. :)