Three Years Ago Today.......

     To many, today is just another day.  To me, this date will always stand out and cause me to reflect and remember.  Three years ago today, Dr. Khaled Aziz performed a craniotomy on me to remove a brain tumor.  I had already been on this journey for 5 months, beginning with my tumor being discovered on August 2nd, 2010.  After having 70% of it removed and then enduring 6 weeks of radiation, we thought the worst was behind us.  Then, after a follow up MRI, it was discovered that my remaining tumor had actually grown three times its original size.  I was told that this was unheard of and that I was now famous in the medical community as doctors were studying my case and trying to figure out what happened.  (I guess that was my 15 minutes of fame!)  My second surgery was scheduled for January 3rd, 2011 and I was told that this was going to be a very invasive and possibly disfiguring surgery.  I can remember being paralyzed by fear, but so desperately wanting the tumor out of my head and for this ordeal to be over.  The surgery went very well, although, unfortunately, not all of the tumor was able to be removed.  As I sit here typing, my remaining tumor occupies my frontal lobe and loves to remind me of his presence every day!  I hate knowing that "he"  (I named him Ben) is in there, but I just take it day by day and hope that he never begins to grow again! (Meningiomas are reoccurring tumors....so the thought of regrowth is always in the back of my mind.) I have some side effects....daily headaches, barometer head, memory problems and some vision problems......but I am lucky to be alive and stronger than I ever knew that I was!  I will always dread MRI days and I will always worry that every pain means that my tumor is growing.....but that is just my new reality and I will embrace it and "Just Keep Livin.'!"  Many people are tired of hearing my "tumor talk," but until you experience something like this, you will never understand that impact it has on your life and the need to talk about it.....so I will keep on talking, sharing and blogging!  I am also very thankful for a group called Meningioma Mommas......a place where I can turn when I have questions, concerns, worries or I when I just need support.  This group has become like a second family to me because they know exactly what I have been through.

     So today, as I celebrate my three year craniversary, I thank all of you who have been on this journey with me and who have supported me for the past three years.  Thank you for supporting and loving this crazy Meningioma Momma!!

2 Year Craniversary

     Today is my 2 year craniversay.  It seems weird to focus on this day, but it was a day that changed my life forever.  I don't celebrate it.  I don't expect a cake or cards, but it is a day that I choose to stop and remember where I have been and what I have overcome.  I tried really hard to do that today, but I couldn't focus on me today.  Today, my thoughts only went to my dad.  His cancer is back and again, he will begin treatment to fight this horrific disease.  It took me a few days to digest this information......obviously it wasn't the news we wanted to hear, but it is his reality and now we must deal with it. 
     So, as I have been trying to deal with this news, I began to think of my dad and what he means to me.  I have always been and always will be a daddy's girl.  I talk to my dad on a daily basis and if I don't, the day just doesn't seem right.  I turn to my dad for everything.  I have always needed him.  From relationship advice, to help with my car, to absolutely everything.....I turn to him.  I never do anything without asking my dad and making sure it is ok with him or that he would approve.    I remember after I married Doug, we wanted to go away for a weekend and I told him I had to call and ask my dad!  He was laughing so hard!  He said, "Kim, we are married!  You don't have to ask your dad anymore!"  He was right, but it is all I had ever known and it just felt like that was what I was supposed to do....it felt like the right thing to do.  I am loved by my dad and he lets me know that every day.  I am one lucky girl.
    Now, as I sit here, worrying about my dad and this recent news, I begin to think about my other Dad......God, my Father.  You see, I am his child too.  Just like my dad, I talk to Him every day and I turn to Him for everything.  I need Him too.....from advice, to help, to absolutely everything.  I never do anything without asking Him for help or guidance.  So, tonight I turn to Him in prayer and ask Him to be with my dad.  I ask him to help my dad get through this next round of treatment and for all of us to be the best caregivers that we can be.  Why do I turn to Him?  When it comes to my faith, it is all I have ever known.  I turn to Him, because it just feels right.  I turn to Him because I know that I am loved by Him and that how I am feeling right now matters to Him. 
     So, today it is my 2 year craniversary, but I am not focusing on that at all.  I am focusing on how I am a daddy's girl.....to my earthly dad and to my Heavenly dad and that makes me one lucky girl.

October 25th, 2012- Ben Isn't Growing!

     Friday, was a long day.  I have been having a lot of pain in my head, so I scheduled an MRI.  I wasn't supposed to have another one until December, but I  was in pain and I just couldn't wait.  I had been taking Ibuprofen every day and even had to get a new pillow because I couldn't lay on the right side of my head.  All signs were pointing to Ben, (that is what I call my tumor), growing.  You know, most people think that because my tumor was benign that I have no reason to worry.  Well, even though the word cancer was not involved, a Meningioma is a reoccurring tumor.  In fact, most re-growths happen within three years of the first removal.  My tumor was not fully removed so for me, it is not a matter of "if" the tumor will regrow...it is "when" will it regrow.  So every little pain, or sniffle or headache causes me to think that the tumor is growing back.  I also am a member of a group called "Meningioma Mommas" where people who have Meningiomas share their stories and we support each other through our journey.  The majority of those woman have all had reoccurrence and most of them suffer from severe side effects such as loss of motor skills, vision and speech.  As I read most of the stories, I realize how very lucky I am.  That being said, I also realize that this could change at any minute, so I was very prepared to hear that my tumor had started to grow.

     As I was in the MRI waiting room, for over an hour, I had the pleasure of meeting 2 men.  One young man was 20 and was battling Chron's Disease and the other was 56 and battling Pancreatic Cancer.  We filled our anxious hour of waiting by sharing our stories, the moment we found out about our diagnosis and the complications we have had since that day.  We had never met before, but we felt like we had known each other forever.  I realized at that moment, that these two men are the ones that I have the most in common with today.  Sometimes, it is so hard for me to get through a day with my pain and these two men understood that.  We shared a story.  We had something in common.  A struggle, constant worry, fear......all something we knew nothing about a short time ago.  When they told their story, I listened with compassion as they did when I told mine.  No one said, "Well, it was benign so you have nothing to worry about."  No one said, "Your MRI will be fine.  Don't worry."  We all know that there are no guarantees in life and to a fellow sufferer, you do not say such things.  They looked in my eyes and saw the same thing that I saw in theirs.  Pain.  Our lives had been changed.  Maybe we were all dealing with three separate issues, but the struggle bonded us together.  No one understands me better than someone who has been there too.  They were there....in that waiting room with me.......for a reason.  I think I was there for them for a reason too.   We promised to pray for each other as we left, knowing that we would probably never see each other again.

     I got my results that day.  My tumor has not grown and I do not have to go back for another year. (I'll never make it a year!  I worry too much!)  I left the hospital on a high......happy that another surgery is not a part of my present.  I also left wondering about my two new friends.  What were their results?  Did they leave with the same excitement that I did or was their news more terrifying?  I probably will never know.  But I will pray for them daily now, because they are a part of me.  They are the people that I walk by daily that have a story.  The people in the grocery store, the people at the mall....people walking around daily that have all had their lives changed.  I will keep my eyes open to people like my two new friends.  After all, it is in our eyes.  You can see the pain.  All you have to do is look for it.  It is there, I promise.  And sometimes, all someone needs is a smile or an opportunity to talk about it.  Because you see, the hardest part of this is that for everyone else, life goes on.  Life goes on without the worry, without the fear, without the pain.  For us, life goes on, but it will never be the same.  Most people will never understand that and will miss the many opportunities that come our way to make a difference in the lives of another.  My two friends reminded me of that and for that, they will always hold a special place in my heart.

    So, if you have a story, please know, I want to listen.  I will listen with compassion and I will be there if you need me.  Our stories connect us, our struggle bonds us and our pain allows us to be a part of the same journey.  I have a year ahead of me of waiting, worrying, wondering........I hope my new friends will be praying for me too.

Thanks for sharing this journey with me.

Kim

   

It's Been a While.....

          I have been thinking so much about my last two years lately.  Well, I actually think about it every day, but due to the fact that August, when this entire journey began, is right around the corner, I have been thinking about it a lot more.  You see, in the past two years I have learned so much about myself, about life, about my faith.....and none of this would have happened without Ben.  (That's the name of my BENign tumor...I call him Ben!!)  So today, I am just going to write about the lessons from the past two years.  Not necessarily for you all to read, but for me...to let it all out and maybe, in the process, I will heal a little bit more and maybe help someone else out there as well.  So...here it goes!!

1.  Life for me will never be the same.  I have changed.  Some people get this and others do not.  This tumor, that still resides in me, is a part of me.  It has changed me for the better in many ways.  I take more chances. I take more risks.  I look at people differently.  I am more empathetic.  I love harder, I appreciate more, I embrace each day.  But, it also has changed me in other less favorable ways.  I am less tolerant of complaining, or negative feelings, or senseless arguing.......I tend to get frustrated with people that are letting little things bring them down.  I am more blunt, go after what I want more and tell people how I feel more often.  This doesn't always go over very well!!  I have realized that my life was almost taken from me and I am lucky to be here......I know how I want to live each day and I want to be happy!!!!  I want to see the joy in each day.  I want to laugh and have fun and just be silly!  I don't want drama or stress or worry.  So, as much as I have changed for the better, I have also changed for the worse as well.  Go figure!!

2.  My God is amazing and my God had a plan.  In His infinite wisdom, He lead us from NC back to PA with perfect timing.  Two weeks later, my tumor was found.  At first I thought it was because I was going to die and my family would help Doug raise Zack and Davis.  But, God had greater plans for me.  He allowed me to be a witness to my students at St. Anne's, to my friends in NC and to my new friends in PA.  He allowed my family to right by my side the entire time, especially to help Zack get through this.  He used me and my situation to show others how mighty He is.  For it says in His word, "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11) 

3.  God’s plan wasn’t over.  One year and one day after my tumor was found, a grapefruit size lung tumor was found in my dad.  Stage 3A lung cancer.  Surgery was not an option and his life expectancy was 15 months.  Chemo and radiation took its toll on my dad, but he said he watched my strength and now it was his turn to be strong.  My dad, my strength, my hero….was getting strength from ME!!  When he had to have an MRI, I was able to explain it to him.  When he was getting radiation, I could tell him all about that too.  Pain??  Take a few percocets dad…they are great!!!  All of those years where my dad was my strength, it was my turn to be his.  I would have never been able to be as strong for him if it wasn’t for what I went through.  My God prepared me.  He was working His plan and it was all working out.  My dad’s tumor shrunk, surgery was performed and now he is cancer free.  You see, “And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.” Romans 8:28

4.  I am a survivor and I am strong.  Holy crap am I strong!!  I have always viewed myself as such a weak person, but now I know that I am stronger than I ever knew.  When I read posts in my "Meningioma Momma's" group, I realize that I am so lucky to be as healthy as I am now.  So many other survivors have not been as lucky as me.....memory loss, motor skills damage, vision loss.....long term disabling effects.  Some, are even no longer with us.  Yes, I have pain every day and headaches every day and I forget everything.....but that's it!  I did this!!  I didn't let this tumor win.  I kicked its bootie!!  Why....because Philippians 4:13 tells me that "I can do all things through him who strengthens me." 

As August 2^nd approaches, I have so many emotions.  But the one that stands out the most for me is I AM BLESSED.  This tumor was God’s mercy in disguise.  So much more good has come from this than I could have ever imagined.  Yes, I will never be the same again, but to me….that is a blessing.  The song below says it best.

Laura Story
Blessings

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

My next scan is in December.  Until then, I will trust that my God is in control.  He has this in His hands and I wouldn't have it any other way!

     Monday, August 2nd, 2010 started out like any other normal day.  I had one focus only that morning and that was my dear friend Ali's wedding which was on Saturday in NC.  Doug and I were out shopping for wedding shoes and picking up my bridesmaid dress when we got the call from the eye doctor.He told us that Med Express set up an appointment for me. I tried to cancel, but they said that Med Express told them that if I didn't come in  I would end up in the hospital!  I have never been to an eye doctor before, but this appointment will remain in my mind forever.
     After the doctor examined me, he noticed that my right eye was protruding out quite a bit and that concerned him.  He ordered an immediate CT Scan.  I passed out.  I was in shock.  I remembering thinking that this had to be a joke and that Ashton Kutcher was going to walk in at any minute and tell me that I was being Punked!! I remember the look on the doctor's face and most especially on Doug's face.  We left to get the scan, but before we did, I had to call my family.  I remember sitting outside of the lab and talking to my mom and dad.  I was crying so hard.  I was telling them the news and all of us were speechless.  Everyone was telling me it would be ok and not to worry......but for the first time in my life, I was petrified.
     After the scan, we had to go home and wait for the call from the doctor.  That call came at 5:00pm.  I remember Doug talking to the doctor and I was just screaming to him, "Am I going to die?"  When he got off the phone, it was confirmed that I had a tumor behind my right eye and I needed surgery.  It was scheduled for Wednesday, August 4th.  I had to only wait two days to find out what this was, but those were the longest two days of my life.  I remember lying on the bed in complete shock.  I couldn't eat, I was sick to my stomach, I was on valium, yet nothing helped.  I looked at my kids and didn't know if I would see them grow up.  I thought about the house I was building and didn't know if I was ever going to live in it.  I looked at my husband......and I ached inside.  Doug and I had conversations in those two days that no couple should ever have to have.  We held each other closer, we kissed a little longer and we cried harder than we have ever cried in our lives.
     The surgery revealed a benign meningioma.  YES...no cancer.  But, only 70% of the tumor was removed.  I needed 6 weeks of radiation.  Cat Scans, MRI, Radiation....words that were not familiar to me became a part of my daily vocabulary.  Each day I woke up brought more worry and fear to me.  Yes, I was so grateful that this was not a cancerous tumor, but that didn't make the journey any less difficult.  I faced daily radiation...every morning at 6:45am, strapped down on a table with a mask on my face.  That was the scariest thing ever for someone as claustrophobic as me.  Doug was with me, by my side, every day.  So, was my Casting Crowns music....I had a CD that I played during treatment.....In Me, Praise You in the Storm, songs that will always have a different meaning to me now.  Finally, October 14th was my last treatment.  I did it!  I made it for 6 weeks.  I had one month to wait to see the results.
     The results came after an MRI....and the news was not good.  The tumor had grown about 3 times its original size.  This never happens with Meningiomas, so they were concerned that this was something else.  Another surgery, more worry, more fear, more questions, more tears.........I remember thinking that I wasn't strong enough for this and I just couldn't take much more.  This surgery was a craniotomy and major brain surgery.  They used words like disfiguring and no guarantees.  My surgery was scheduled for January 3rd, 2011.  I would not find out results though for at least 3-5 days. 
     The surgery was tough.  Not only on me, but on my family as well.  I was in ICU for 24 hours and then to a regular room for 3 more days.  I was in and out of it, but I knew that the results would be coming soon.  I couldn't think about anything else.  Every time I opened my eyes, I saw the people that I loved and wanted so bad to be strong for them, but I couldn't.  I just wanted to know......my future.....will I have one?  Finally the news came after being home from the hospital for 2 days......it was a benign meingioma too!  The future was going to be a part of my life.  I don't know what I did to deserve that outcome, but I will live each day for the rest of my life being thankful for it.
     My journey is not over.  They did not get all of the tumor and some still remains in my sinus cavity.  We will continue to watch it and get scans for the rest of my life.  As of May 20th, it didn't grow at all and my next scan is September 16th. Prayers are welcome!
I relied on many things to get me though this last year:
Doug- you were my rock.....I fell in love with you the day you walked into my classroom with Davis and I love you even more today.  I could have never done this without you.  I get to have a forever with you and I am so grateful.  We fall deeper in love every day and this situation has brought us closer together than ever. You gave me strength.  You were my strength. You continue to be my strength. I love you...without fail.
Mom, Dad and Kel- God knew I needed to be near my family so he sent us back to Pittsburgh for this.  I can't even begin to thank you for what you did for me and still continue to do.  There is nothing I have needed over the past year that you haven't been willing to do.  Your support, your love, your help.........thank you from the bottom of my heart.  I love you all so much.
My Friends and Family- (even my Facebook Family!) Your cards, flowers, posts, calls, texts.......they gave me such strength.  I knew that so many people were praying for me.  I not only knew it...I felt it.  You were the wind beneath my wings!  Thank you for standing by me and helping me get through this year.  I am lucky to have such wonderful people in my life.

 My God- I struggled with my faith...I yelled, I cried, I doubted and I asked WHY?  But in the end, I realized that I will never know that answer.  That is why it is called faith.  I now have surrendered and I trust.  You have held my hand through all of this.  You have brought me peace when I prayed, people when I needed them and have allowed so much good to come out of this.  I can't imagine going though this situation without my faith.  I will spend the rest of my days being a witness to your great love and telling my story because in the end...it never was my story......it was yours.  You were telling a story of faith through me.  I will continue to tell it, Lord.....I promise.......and I will glorify you in all the days that I have left!



     So today, I ask that we all join together and take a moment to love those in your life that you need to love.  Hug them, kiss them, appreciate them and take the time to tell them what they mean to you.  We never know what tomorrow will bring, so do it today.

Thanks for taking this journey with me.  I love you all.
Kim

Living Lent!

"Lent is the time of our lives where we are most especially called to reflect on our own lives and ask ourselves, how much do we thirst for an intimate relationship with our loving Jesus who is just waiting for us to respond to His love? It is the time that we must deeply ponder how much do we thirst for a life that is life-giving to others?"

      A few weeks ago, my cousin Dana and her husband gave me a bracelet to wear that said "Just Keep Living."  J.K. Livin' is a company created by Matthew McConaughey in 1996 to encourage people to make a living with their life.  http://www.matthewmcconaughey.com/   The day that they gave me that bracelet something inside of me changed.  I realized that I hadn't been living since my first tumor was found on August 2nd.  I was paralyzed with fear, worry, anxiety and thoughts of negativity.  I was just living from scan to scan...waiting for more bad news.  That bracelet changed that.  It made me realize that I was going to live and even better than that.........live out loud!!

Since that day, the bracelet has never left my wrist and has been a part of all the decisions I have been making.  I have decided not to return to work this year.  I will go in once a week to teach Lenten lessons, but the rest of this year will be used so that I can LIVE !!  I have also joined my church's Pastoral Council and am participating in a weekly Lenten Bible Study.  I plan on attending daily Mass as often as I can and also hope to take an online class at the University of Dayton about the Sacraments.  I am currently leading a Lenten discussion group on Facebook too.  I feel so alive for the first time since August!  Why? Because I am not consumed with ME.  I am living for Him.  That became my focus again the minute my cousin Dana and her husband Brian gave me that bracelet.

What I really feel is amazing is that this all happened right before Lent.  The perfect time for me to LIVE...40 days to live and not to be consumed with my tumors!  (especially since my next scan isn't until May 20th!)  It is almost as God had this all planned.  The timing was perfect.  I can hear Him saying to me, "Just Keep Living, Kim.  I'm not done with you yet!"  

I want to have a faith that is life-giving to others.  So, today, I promise to JUST KEEP LIVING AND TO LIVE OUT LOUD!!!!  http://www.youtube.com/watch?v=tVLHTqdkwZ0

Walk by Faith

Since my scan on the 10th, my mind has been spinning.  I was so relieved to receive news that didn't lead to another surgery!  Since I do have some remaining tumor in my sinus cavity, it doesn't mean another surgery is not in my future, but at least until my next scan, May 20th, I can relax a bit.  Thus the trip to Boca, which was wonderful, I might add!
Anyway, One of the things that I have been doing since my last scan, aside from the few trips I have taken, is to really begin listening for what God has planned for me.  Maybe I will hear Him speak to me through a homily, or a friend, maybe a random stranger that I meet or maybe in a song. So, I was listening to a song the other day by Jeremy Camp called Walk by Faith.  Jeremy lost his wife four months after they were married to cancer.  He said that he just wanted God to tell him why.  He realized that in order to "walk by faith and not by sight" the question of "why" can't be answered.  If it was answered, then it isn't really having faith, is it?  That is the kind of faith that I want.  I don't know why my head has become the beloved home of meningioma tumors.  I don't know why mine were benign and some people aren't as fortunate.  But, I guess to be His follower, to be a true believer, I don't need to know why.  I just have to believe that my God has a reason and that He will reveal that reason to me on His time, not mine.  That is faith.
Even since this journey began on August 2nd, when the first tumor was found, I did ask why this happened, but I never doubted that there was a reason behind all of this.  I know my God well enough to know that whatever the outcome was, He had a mighty plan.  As I sit here today, I am just not sure what His plan is.  I feel like He has something big in store for me.  I feel like He will use me to make a difference somehow.  I want to take this experience and use to to inspire others or help others in their time of need.  I am ready to finally make sense out of all of this and have His plan revealed.
 
So I, like Samuel, am waiting.......waiting as His servant, ready and willing to do as He pleases.  My life is Yours, Lord.  Speak now, for Your servant is listening.