10 Years- August 2nd, 2020

I was talking to a friend on the phone the other day and I was telling him a part of my story. He asked if I had it all written down, because I was explaining it in such detail.  The answer was yes, I do. Not on paper, but on my heart and in my mind. I remember every little detail. I remember every word that was spoken, every look that was exchanged and every tear that was shed. Today, it is 10 years since my diagnosis, but in my memory, it feels like it was yesterday.  

August 2nd, 2010. The day that I was told that I had an intruder in my head. A tumor. A word that I never thought I would hear. I will never forget the phone call that changed my life. I will never forget the look on my husband’s face. I will never forget my dad, holding me in his arms as I cried. I will never forget my mother asking over and over again, “Why?” I will never forget the feeling that I had inside. I was numb. Paralyzed with fear.  So many thoughts were racing through my head, but one was on a constant loop, “Am I going to die?”

I was in surgery two days later and even though they were only able to remove 70% of the tumor, the pathology report showed that I had a Level 1, Grade A benign Meningioma. I then began 26 days of radiation. This, by far, was the hardest part. 30 minutes a day, bolted down to a table in a mask that was not meant for someone as claustrophobic as I was. The doctors assured me that this would eradicate the remaining 30% of the tumor, but they were wrong.  A month later, at my follow up MRI, it showed that my tumor had grown three times its original size. Radiation had an adverse effect, causing my tumor to grow instead of shrink. “We don’t understand. This does not happen,” they said. Just when I thought my journey was coming to an end, this news meant that it would continue.

January 3rd, 2011. Surgery #2. A craniotomy. Disfiguring. A word that they used that sent chills through my body.  ICU, a 4 day hospital stay, 38 staples in my head, a head full of titanium plates, screws, bone cement and mesh, and the news that they still were not able to get all of the tumor. He still remains today. 10 years later. I call him “Ben.”  I never wanted him and I don’t really like him, but he has changed my life and taught me so much. These are just a few of the lessons that I have learned from “Ben.”

1. I’ve learned that life is short. I don’t want to take one moment of this life for granted. I now know that tomorrow is not guaranteed. 

2. I’ve learned to treasure every moment that I have with my loved ones. I want them to know that they are loved and I plan on telling them that I love them over and over again.  I will never tire of telling them that I love them.

3. I’ve learned to love unapologetically. I don’t want to  judge, just love. I want to open my heart to everyone I meet.

4. I’ve learned that people are good. I will forever be grateful for the outpouring of love and support from those that I knew and even those that I didn’t. I will return that love and support when others go through hard times of their own. 

5. I’ve learned that It’s ok to still be afraid. It’s ok to talk about what I have been through. (My family calls this my “tumor talk!”)  It’s ok to cry.  In fact, it is necessary for healing. (I will probably cry today, remembering where I was 10 years ago today.)

6. I’ve learned that there is a God and He was with me every step of the way. He carried me, when I barely had the strength to stand on my own. He showed me what it means to trust in His plan. As I prepare for my yearly MRI next month, I continue to put my trust in Him.  

7. Finally, I’ve learned that I am a badass! I endured 2 brain surgeries, 26 days of radiation and I still live everyday with a tumor in my head. I am stronger than I ever thought I was and I am proud of that.

So, do I have this all written down?  Kind of, through this blog that I have been keeping for 10 years. However, the past 10 years are even more imprinted on my heart and in my mind and will be forever. Why? Because it’s my story. It’s my journey. It’s the way my life changed forever 10 years ago today.

Surgery 1- August 4th, 2010
   

6 Weeks of Radiation

Surgery 2- January 3, 2011

My Scar Today

It's Been a While.......

August 2, 2017 marked 7 years since my brain tumor diagnosis.  I remember the day, the moment, the phone call, EVERYTHING about that day like it was yesterday.  I remember thinking that my life was never going to be normal again and also being filled with fear over what the future held for me. Seven years later, I am writing this blog update filled with complete wonder and awe over the way in which God has worked in my life since my diagnosis day!  Romans 8:28 says, "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."  To some, those are just words from Scripture.  For me, it has been my truth.

When life threw me this curve ball, called a Meningioma, the faith in which I had been teaching for so many years had to be utilized.  It is so easy for me as a Catholic school religion teacher to "talk the talk."  (Anyone that knows me knows that I can talk!)  But, for the first time, I was truly being called to "walk the walk" and in a BIG way.  I am not going to say that it was easy.  It wasn't.  I cried.  I doubted.  I was overcome with fear on many occasions.  I complained.  I asked WHY and I'll admit it, I uttered the words, "life isn't fair." However, it was in those moments of pure darkness where I had my greatest encounters with God.  It was in my lowest moments that I found my greatest strengths.  

What made me choose today to write this blog update?  Well, Father Dan, the priest at my school, has been speaking to my classes this week and he asked a few questions that really made me think.  He asked my students to ask themselves two things, "why was I created?" and "what is my purpose?"  Those questions really got to me in a way that I didn't expect.  7 years ago, my answers would have been different.  They would have been my answers. Today, they are His.

I was created to live a life giving glory and honor to God, no matter the circumstance.  Brain tumor or not, my God gets the glory.  He gave me a story to tell and you better believe that I am going to tell it!  (I love my tumor talk!!  lol)

I was created to lead others to this same conclusion.  Maybe not by my words alone, but by my actions that are constantly trying to imitate His.

My purpose is to support others along their "curve ball" journeys and to use my story to help them through theirs.  We don't have to go through the low moments of life alone.  These moments are a lot less dark when shared with others who know and understand your pain.

God caused "so much to work together for good" the past seven years.  I would not be who I am today without August 2nd being a part of my life.  My purpose is clear now.  Whatever you want from me, Lord.  I'm yours.  May your will be done.

5 Year Craniversary

     It has been such a long time since I have written an update on my blog.  I'm not sure why.  I wish I had some grand reason like I was traveling the world or writing a book, but I don't.  I guess I have just been busy living......which, if you have followed my story at all, you know that is a great reason!! I remember the first year after my diagnosis, I wrote a blog about my cousin Dana giving me a Just Keep Livin'  bracelet to remind me that I had to be thankful for each day and to continue to live each day to the fullest!  I guess since my last blog post I have been doing that!  Thanks, Dana!
     Anyway, yesterday was 5 years since my second surgery.  Believe it or not, I forgot!  It took my wonderful niece, Kasey, to remind me!  (as we were watching the Steeler game!)  This is the first time since my diagnosis in 2010 that I have forgotten one of the dates dealing with my journey.  At first, I was upset with myself for forgetting, but then I realized what that meant.  It meant that I wasn't living in daily fear anymore and that other things in my life have taken priority over the uninvited friend (that I call Ben) living in my head!  It meant that my tumor wasn't in control anymore and that I truly was living each day to the fullest!  With that being said though, I was glad that Kasey reminded me and that I had an opportunity to reflect on my journey, which in turn, led me to this blog post.
     5 years.  So much has happened over the past five years.  I remember asking the question WHY so many times after my diagnosis, but I think after five years, I finally know at least a few reasons why. My dad, Luke, and Stacy are just a few of the reasons why I know that God took me on this journey. Let me explain.

My Dad-  When my dad was diagnosed with lung cancer a year after my diagnosis, I was able to be his strength when normally he had always been mine.  I was able to talk to him about radiation and MRI's and he knew that I understood what it felt like to have something growing inside of you that you didn't want.  Until you know what that is like, you can't relate to someone who is experiencing it.  I had a connection to my dad during his last 18 months that brought us even closer than we were before.  For that bond I will be forever grateful.

Luke- Luke Blanock and his family have become such an important part of my heart and my life. When you think about beautiful people, you think about this family.  If I hadn't gone through my own ordeal, I never would have reached out to Luke and his family and I would have missed meeting one of the most amazing teenagers that I have ever known.  Luke is battling cancer right now and has recently been given a terminal diagnosis. Getting to know Luke, Katie, Jan and Kurt has been one of my greatest blessings and for this bond  I will be forever grateful.

Stacy-  Stacy Hurt came into my life through our mutual friend Becky.  Becky asked me to pray for Stacy because she was diagnosed with stage 4 rectal cancer.  After talking to Becky, I reached out to Stacy on Facebook.  If I hadn't gone through my own ordeal, I never would have reached out to Stacy.  I knew what she was feeling...the fear, the worry, the confusion.  I wanted to offer my prayers, but I also wanted her to know that she had someone to talk to if she ever needed it.  Since that first FB message, Stacy and I have become so very close and I can't even imagine my life without her now.  She has inspired me on so many levels and I know that our friendship was God breathed. (Genesis 2:7)  It was His plan for us to meet and for our bond I will be forever grateful.

There are others as well......Kim W., Tina (Evan), Michelle H.......I know he has led me to you too.  I am grateful.

Over the past five years, I have gone from someone who needed support and encouragement to someone who gives support and encouragement.  God knew that there would be people in my life that needed me and I wasn't ready to be what they needed five years ago.  He prepared me for these situations and for that, I will be forever grateful.

"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

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!