January 2008 Archieve

January 31
Life...
Once again thank-you for all the support. Finding out answers has been both a wonderful thing AND an equally scary thing for us. We have found out that the seizures are a direct result of the Pituitary Tumor. It is thought that initial treatment will involve Radiation therapy. I will know more after my appointment on Feb. 19. with Dr. Tanner, my Neurologist here in GR. I learned that the Neurosurgeon that I will meet with is Stephen Sullivan, from the University of Michigan Hospital. Dr. Tanner spoke very highly of him and said that he has even performed pituitary surgeries on patients from the Cleveland Clinic, when those doctors were not confident on the particular situation.

In the meantime, I'm trying to enjoy my family...sleep through the medication adjustments, spend time with those who are supportive (Even went and played Bingo for the first time a few nights ago, and drank hot chocolate at Denny's....told you I'm losing brain cells...ha! ha! Went to the grocery store the other day, and even cooked home-made soup for my family today!)

I know that some things like playing bingo, or grocery shopping, working on my scrapbook, playing go fish with my kids, or preparing dinner may seem trivial...but to me, they are all an attempt to "continue living". Some days, I want to sleep and sleep alone. I think that is a combination of pure exhaustion and depression combined. Somedays, I'm too tired to venture to the mailbox, others I have cleaned the whole house and done 6 loads of laundry. I'm doing my best to stay positive, but some days are just easier than others.

I think sometimes the financial stress of me not working gets the best of me, BUT we recently found out that I may qualify for Medicaid. Thankfully we do have wonderful health insurance, but the Dr. co-pays and prescription co-pays are killing us. If I get approved for Medicaid, it will cover what Blue-Cross doesn't. (we should not have any out of pocket medical expenses if approved.) I'm crossing my fingers and praying hard for this!

Thanks to all my prayer warriors and everyone who has helped make things a little easier on us.

Much Love, Kendrah


January 29
Baby it's C-O-L-D !
Wow, today I went to the mailbox in a shortsleeve shirt...and it felt unseasonably warm.

Tonight, well....
It's cold. So cold, my dog won't go outside. He's virtually dancing all over the living room because he needs to go out so badly, but when I open the door he freaks when he feels the cold air. Then, like Michael Jackson doing the moonwalk, he backs away from the door. Two minutes later he gets brave and asks to go out again. Two minutes and two seconds later he's performing the moonwalk again. That's how cold it is.
Tomorrow COLE has a neurology appointment, first one in over 6 months. For any of my new blog visitors...Cole also has Epilepsy and mild CP. When he was just 6 weeks old we were told that he would never talk, walk or function as a "healthy child". I can't wait to show off my boy tomorrow. I hope he jumps off the examining table, doing a cannon ball and calls them a "poopie eye-ball". (Cole's favorite saying when someone makes him mad) Although we don't condone this type of talk, it would be funny. Okay not really, I would be humiliated. I guess I'm just proud off all he has accomplished...I'll let you all know how his appointment goes.


January 27
Feeling lost.
For the past few weeks I’ve been trying to fit back into my life. I’ve been trying to find my pace again, trying to remember who I am, who I was. I know that person. I know her so very well. I know how she reacts and thinks. I know what she loves and what she tolerates. I know what makes her laugh. I know how easy it is for her to forgive and smile. I know her desires. I know what she needs. What she gives. I can hear her, in my head. She’s so real to me. She’s right there. Right there. And the moment I try to conjure her up, she’s gone. Instead something else comes out. Something garbled, different. Somedays I just feel lost.


January 26
THE PATH OF MY RESISTANCE
Home from the hospital, waiting for the test results. Are the seizures deveolping around the tumor? Is the tumor growing, blah, blah, blah.................
You know that quote that talks about not going where others have but going somewhere else and forging your own path? I used to love that quote, I guess I still do, I don’t know. I used to think it was a quote about bravery – a quote about going your own way and doing so because you weren’t a little coward who blindly followed others. I used to think that the composer of that quote was awfully brave. Awfully strong. Awfully wise.
I’ve often gone my own path. I’ve forged my own way. I’ve pressed ahead where there wasn’t a marked trail, scratched my knees, taken branches in the eyes, climbed fallen trees and slide down muddy slopes to go somewhere all on my own. I’ve figured my own way around difficult barriers. I’ve planned and plotted and found new ways to travel. I’ve stood back and taken a deep breath and then charged ahead again and again into briar patches. All by myself, always by myself, and I’ve always liked it that way.
And all along I thought I was awfully strong. Awfully brave. Awfully wise. Today I disagree. Today I think doing it alone is just plain awful. The truth is, I never did it alone because I was brave or wise or strong. I never forged my own path because I was adventurous or capable. I never did it by myself because I was independent or self-sufficient. I did it alone because alone was easier. Alone has always been easier. Up until now.
I don’t know why the author of the quote wanted to forge out on his own. But I know why I have.
You see, when you travel alone you have no one to blame when you stumble. Everything you do and don't do is a direct refelction of "you". Peroid.
This path I’m on I have not chosen. I was picked up from where I was and plopped here on this trail. It is unknown to me. It is foreign. It is unlike other paths I’ve walked in many ways … the greatest of which is this path is well worn. This path is new to me but old to so many that have walked it before me.
To all of you who have tried to travel this path with me, even though I have been trying to go alone. Thank-you. I appreciate the guidance. TO all my friends, family, neighbors, and strangers who have jumped on this path to hold my hand...and hold my heart through these trying times....I could never thank-you enough.
So.
Here we go. I’m ready to learn what this path will teach me. I will do the only thing I know how to do - walk this road one long stride at a time. In 2 weeks this path will lead me to another MRI, please pray specifically for no changes in the tumor size. Feb. 19 - I meet with the Neurologist again to discuss all findings. Until than, I walk the path of the unknown with all of you, my friends.


January 23
Late Night Thoughts...
Although it may seem like a lot has happened to me, although I may wonder at times if my name got accidentally pulled out of the cosmic hat one too many times, although I may sometimes think my dance card is full enough thank you very much –I am notNor do I ever think I will beUpset about the things that have happened to me. (a little annoyed at times.)I don’t like themI complain when I hurtI wonder if there is some way I can “do it better”
I contemplate where this is all going to lead me...But there is not ONE SINGLE SOLITARY CELL IN MY BODY that thinks any of the following things:“this is not fair”“why me?”“what did I ever do to deserve all of this?”when it comes to my health and other difficult circumstances in my life.In fact. The only time I ask those questions is when I look around at my life and I see the amazing, wonderful, unbelievable things I’ve been given. My family. My Husband. My kids whom I miss so much and I cried everytime I heard their sweet voices on the phone today. My friends. My neighbors. The generosity of complete strangers.......the list goes on and on. It is when I look at those things that I stop and say,“this is not fair”“Why me?”“What did I ever, ever, ever do to deserve ALL of THIS??”
So. I know I get grumpy sometimes. I know I haven't been the easiest person to be with. I know that everyone is tired of hearing me say "I just want to go home!" But please don't ever mistake that for me being ungrateful for what the Lord has given me.
I thought we should get that straight.I think I just may be talking to myself.


January 20
Reminder...
30 years old1 husband5 children42 days ago, life was normal.1 headache, 114 seizures3 days in ICU, 13 days in the hospital4 scans, 5 new medications andmany viles of blood later, I get1 ticket back to the nightmare from hell..... 5 days back at St. Mary's Hospital 0 great choices2 profoundly bad months in the life of this family..1 more reminder to hold tight the ones I love tonight!Next week I will be stuck in the hospital my sweet children, that is why mommy is hugging you a little longer tonight. Love you to the moon and back, mom


January 14
100 Guns...
The statistics are amazing. Up to a 80-90% cure rate for this type of tumor...NINETY PERCENT. I carried that 90 around with me for two whole weeks. I held it in my pocket and talked to it late at night. I showed it to my family and my friends and I put it on the little soap shelf next to me in the shower. 90% and I became fast friends.
But lately, 10% has been showing up. And all I can think of is if you put 100 guns in front of me and told me only 10 of them had bullets in them I still wouldn’t pick one up and put it to my head. 10% is too much.
90% is too little.
I want my 100% back!

I've had some more seizures, or as we call them at our house "the shakes"! So they have doubled my seizure medication...I figure at this rate I will be offically brainless by 31.

January 07
Drugs
Anti-seizure medication has side effects. Every person responds differently so there are lots and lots of potential problems you could have. Some are more annoying than others. Few of them worry me. I mean they are somewhat bothersome in the moment but all in all, they are temporary and therefore not so upsetting. Except one. One of the potential side effects of these drugs is terribly upsetting to me. Apparently, there can be cognitive effects. And I don’t mean good cognitive effects like I’d be able to suddenly do logarithms or solve that really hard problem at the beginning of Good Will Hunting. No, the cognitive effects can be negative. Basically what were talking about here is I have a chance of getting dumb. er. Dumber. I say dumber because I really think this is starting to happen to me. I think I’m losing brain power. Yesterday I forgot my mother's first name. Two days ago someone told a joke and I didn't get it. This may not seem too upsetting but it was a knock knock joke. Everyone gets knock knock jokes. Most upsetting is I feel like I'm constantly faking that things make sense. "Oh yeah, I remember where I put that....just give me a few minutes and I will find it". I don't remember the phone number of my children's pediatrician....with 5 kids, I used to have it memorized. I looked for 10 minutes for aluminum foil in my own house yesterday....You get the picture....These pills are making me STUPID. :(


January 05
Happy Birthday Dawson!
Dearest Dawson,
Yesterday you turned 7. SEVEN! I can hardly believe it. You are growing up so fast. I know every adult says that and I know you cannot understand it but the days and years are flying by for those of us who are honored to be raising you.
I try to be the best mom for you....Sometimes I forget that my needs don't come first. I forget that what I think I deserve comes after what you deserve. That makes me impatient at times. That makes me pout like a five year old. That makes me argue with you sometimes over the smallest stuff that doesn't even matter. Will you forgive me for that? I'm doing better. I'm learning every day about what it means to have children.. I'm learning how to be a the best mom I can be. For you, dear one. for you.
I couldn't be prouder of you.
You are funny. You are wise. You are delightful. You are kind. You are smart. You are aware of others. You are gentle. You are insightful. You are good friend to your friends. You are a wonderful son! You are truly a gift. You, like your siblings, are proof to me that there is a God and that God loves me very much!! I love you, Mom


January 02
Annoyed...
A friend of mine stopped by last night to ask me how I was....."How are you"? "Fine.".....I said. "No, really how are you"? After much thinking and lots of contemplating...Amy, I have an answer....I'm very annoyed. I'm not scared,...I'm annoyed. That is the HONEST truth.
I’m annoyed that my stomach hurts after I eat and that I haven’t had a normal bathroom break since the hospital and the new meds.
I'm annoyed that I have to drive to Ann Arbor to meet with these Dr.'s.
I'm annoyed that there is something foreign in my brain...something uninvited harvesting there.
I'm annoyed that I can't drive.
I’m especially annoyed that on one CT report it states that my “visualized brain is unremarkable” - I find my brain highly remarkable thank you very much.
I'm annoyed that I had to explain to my 8 1/2 year old what my seizures look like and what to do if I have one and she is home.

Yup, I'm annoyed!