Kortne's Story about Learning to Live with LFS

“If you were me what would you do?”

Working as a nurse, I have been asked this question so many times. It wasn't until I was the one asking this same question, that I could truly identify with the countless number of emotions hidden behind it. Behind this question is so much more,

it is an unsure where to start feeling,

a feeling of being scared beyond belief,

it is anxiety,

it is needing assurance,

it is searching for empowerment.

This question is the first step of processing a cancer diagnosis that is so unfair and so unwanted.

Dealing with cancer and receiving an unwanted diagnoses is a foreign world.

Understanding the disease process

awaiting pending pathology reports and diagnostic testing

preparing for ultimately bad news.

For me, this foreign world has become too familiar. Cancer chose me not once ...not twice...not even three times. FOUR. Four times cancer chose me. I never chose it or anything that comes along with it! I hate cancer. But Guess what? I’m still living, I’m still enjoying my life, I’m still fighting.  As much as I hate to admit, cancer taught me so much about myself and about life. It’s easy to forget how precious being alive really is!

My first battle with cancer was at age 9. I had a rare type of sarcoma called a liposarcoma. After many appointments, tests, and scans the team of doctors recommended surgical resection. 2 surgeries later, I was deemed cancer free. Going through this experience at such a young age made me grow up faster than others my age and process thoughts that children should not have to worry about. That was my first cancer; it was also my first cancer life lesson. One that had a lasting impact on my life.

My first cancer was the “ah-ha” moment that inspired me to want to become a nurse. I like to think that this was cancer's way to open my eyes, my heart, and my mind to see that I needed to help others through medicine. If it wasn’t for cancer would I still have dreamed of becoming a nurse to help others like I was helped? No one knows.

15 years later I received my 2nd cancer diagnosis, this time melanoma. I was guilty of using the tanning bed and laying out in the sun as any teenager does. Did I think it would cause a minor sun burn at times? Yes. Did I think it wound cause melanoma, the deadliest type of skin cancer there is? Absolutely not. I wish I knew then what I know now!

The plan of attack this time was surgery with a wide local excision to remove the cancer and check my lymph nodes with a sentinel lymph node biopsy.  Then they had to cover the gouged out area (think a putt-putt golf course hole) with a skin graph. I felt fortunate that the cancer had not spread to my lymph nodes and no further treatment was necessary. My prayers were answered and I was blessed. My life resumed, I got married, my career advanced, yet there was always a small cloud of fear hanging over me that this cancer would return or metastasize to other areas of my body.

I just could not have predicted the hard hitting craziness 3 years later in 2017. I got my flu shot the second week in October.  1 week later I developed sudden numbness and tingling in my right arm and hand, the same arm as my flu shot.  Of course I downplayed it and tried to convince myself it was a reaction to the flu shot. Nurses have a bad habit of self persuasion. It continued the next day and on the 3rd day, while I was driving to work I went to press the brake and my right leg wouldn’t move. I knew I could no longer downplay this and convince myself it was from the flu shot, it was in my best interest to see my doctor immediately.  Deep down in my heart I knew it was more.

I was scheduled for a same day MRI. As a nurse, I knew all of the symptoms I had suddenly developed over the course of 3 days pointed toward some kind of neurological diagnosis. I refused to accept that possibility. As the MRI techs locked the “bird cage” over my head, the  fear of what the MRI might show hit me all at once. I do not remember a time in my life that I had ever been so scared. The tears flowed as I was slid into the machine. I just did not want to know, but needed to know so bad all at the same time.  I was walking out of the imaging center, my phone rang and my heart dropped.

“I am so sorry I have to tell you this but the MRI showed that you have a brain tumor.”

I had so many emotions,

so many questions,

so many thoughts,

yet I was numb and spaced out.

Every bit of my medical knowledge went away and I was left with nothing not say. I needed time to absorb and time to think.

That same night as my husband and I laid there attempting to sleep, I must have had a strange feeling because I said to him in my serious patient education nurse voice “do you know what to do just in case I were to have a seizure? Not that I’m going to or anything but just in case I were to ever down the road - just roll me onto my left side and call 911.” 3ish hours later he did just that. Things moved so fast from there.

Less than 2 weeks later November 9, 2017 . I was anxiously rolling into my awake craniotomy. I knew it would forever change my life. The outcome was uncertain. I was as still and calm as possible because I knew that on the other side of the sterile drape was the man my husband, parents and I had trusted to cut into my brain. My brain!!! So crazy to think about! As the hours went by, I was constantly communicating with the physician's assistant who was under the drape with me, evaluating my neurological status the entire time. He never left me and I was not fearful because I wasn’t alone under there.

Flash card after flash card and a series of zings and zaps to test for feeling in my limbs and it was finally time for the intra-op MRI. This showed a small amount of residual tumor and my surgeon elected to go back in after it. At this point, he said I would be put to sleep for the last part of the surgery and would wake up in recovery. Call me crazy, but I asked to be allowed to stay awake for the remainder of surgery. My thoughts were- if I was asleep I would not be able to tell the surgical team if I had any “weird feelings or sensations.” I was the only one who knew what I was feeling in my own body and I wanted to make sure I did everything in my power to get the best end result! It was no surprise that I was the first patient to ever make this request. Maybe it is my interest in the medical world or maybe I’m just crazy.

Living with a Brain Cancer diagnosis turns your world upside down. There is no cure. The pathology of my tumor came back, Astrocytoma Grade II. With this diagnosis and it being my 3rd primary cancer, I was referred for genetic testing. Genetic Test results came back showing that I have a condition called Li-Fraumeni Syndrome (LFS) which is linked to a mutation in the TP53 tumor suppressor gene. People with this mutation have a much higher risk of developing cancer or multiple cancers in their lifetime. Mission accomplished, I guess.

I previously thought that I had to be the unluckiest human on the planet. The diagnosis helped make sense of the cancer, finally an answer. LFS is not only emotionally overwhelming but comes with an overwhelming amount of MRIs and other screenings. This caused a new condition- extreme “scanxiety” being fearful of what may be found and what possibilities I could face next. I  completed the recommended imaging and all that was left on the to-do list was an EGD and a colonoscopy.  I was not particularly worried about either since the MRI of my chest, abdomen, and pelvis showed no signs of malignancy. I figured I had nothing to worry about, right?

After waking up from the procedure I was told the doctor would come talk to me in a small room outside of the recovery suite. “EGD looked great, but there is an area in your descending colon that I am very concerned is cancer.” A phone call a few hours later confirmed that I did indeed have colon cancer. The news itself was terrible and the fact that I had been diagnosed with brain cancer 4 months earlier made it almost impossible to process. I was reminded again how much I hate cancer.

In April 2018, I had a a left colectomy and lymph nodes removed. The pathology returned as stage 3b with lymph node involvement. My medical team's treatment plan for me is 12 cycles of FOLFOX chemotherapy.  My personal life plan remains the same as always, to be tougher than cancer, any and all cancers. I want to be the light to others and share my story to show that even though sometimes cancer tries to suck the life out of us, we can not let it.

Life can still be wonderful in countless ways! We are blessed in so many ways.
It’s hard to figure out how exactly to plan like you will live forever while living like you are dying at the same time. I do not know what my future holds and the unknown is always the scariest part! Being only 28, this is an “adulting” situation I still have to figure out. The one thing I do know is that LFS and cancer has changed my life and the lives of my family and those who love me. I have faith in God's plan for my life and that good will come from all of the bad.

I stopped thinking I have to have a 5 year plan or a 10 year plan and learned to just live.

To make the most of every day.

To do the things that make you happy.

To spend your time with those that mean the most.

To find the goodness in tragedy.

To go on the trips.

To take lots of pictures.

To cherish making memories.

To love all the sloppy dog kisses.

To eat macaroni and cheese for breakfast.

To try new things. To learn new things.

To be kind to everyone you meet.

To right all wrongs.

To be best person you can be. And to share my story to help someone else .


35 Responses

  1. Thank you. Your spirit is so much greater than LFS. Your writing is beautiful. How you choose to live your life is beautiful.

  2. I hope to get to meet you some day and give you a big hug. Brave lady, a story of such courage, such love. We are all blessed having you in our world.

  3. I love you Kortne! You are such a treasure. Continue to fight and we will all continue to pray.

    1. Kortne, you amaze me. Reading this I have a pit in my stomach and a huge lump in my throat. No one should have to go through all of this. But your attitude and faith is so inspiring. I’m always praying for you. Thank you for sharing this and teaching me too to remember the important things in life. And to live it. Lots of Love!

  4. Although we have never met I do know that wonderful man that chose you to spend his life with.
    With your determination and his drive for life I do believe that together you will be amazing and will stand tall on many mountains.
    God has put you two together to concur life’s toughest times.
    I know and pray you will show us all that living life to its fullest is possible with whatever comes your way.
    With continued prayers for your healing, Gods blessings to you both.
    Love always
    Kimberly Kline

  5. I mean, I knew "Courtney's" were amazing, BUT you are by far THE most amazing one I've ever met You are seriously an inspiration to anyone and everyone who comes in contact with you! We are lucky to have you in our lives to show us how to be brave and face challenges that no one would dare touch! My kiddos are even luckier to have such an inspirational, brave, beautiful, kick ass Aunt in their lives! We all pray for u and your journey ❤️ Keep kickin' ass girly! And looking like you just stepped off the pages of a magazine while you're doing it! we love u!
    Courtney, Josh, Becks, Barrett, Bentlee Cruz, &Bossy Cross!

  6. Kortne you never cease to amaze me! You have a wonderful spirit, a wonderful light to share with others. None of us are guaranteed tomorrow. You, however, are living in this understanding you inspire me!!! Love you! ❤️❤️

  7. You are one strong, brave lady, Kortne and I will always continue to keep you in my prayers ! I also hate cancer and so believe that someday there will be a cure found for it. I keep up with you through Joan and Kaye. Love you and may God bless you always.
    Jimmie Holder

  8. You are an inspiration to so many. We follow your fight through your family and we continue to keep you in our prayers. Keep up the fight.

  9. Reading this I cried with you through your journey of triumph, fear, bravery, and love. This story touched me so. Thank you for sharing! You are fierce and you are proof there are real life wonderwomen!
    Love spicy aunt Lisa❤❤

  10. Kortne,
    My husband Shane worked with you at Mission! He always talks about your kindness and love of life. You are so strong and such a inspiration to us! You are always in our prayers!

  11. You are all the things people inspire to be strong, brave, happy, caring , full of life, beautiful and important. I wish you the best on your journey and my prayers are with you . Thank you for sharing your story.

  12. I cried reading ur story--I have never seen such a brave or courageous person! Ur beautiful & I can tell very intelligent! My heart aches for u but I know u can beat this-- You have the courage to do it! God Bless & watch over u! Thxs for sharing ur story! Prayers!

  13. You are an amazing young woman. My prayers will be with you. God is good. He will take care of you.

  14. Thank you for sharing your story and being a light for us all! You are strong, you are beautiful and you are a child of God! I’m thankful basketball brought us together after moving away from Hayesville! Please know you are prayed for and we love you and Brigham!!!❤️

  15. Kortne, you keep fighting honey! God does have a plan! You will get through this, you are an inspiration to us all!
    Love you Beautiful! ❤

  16. Kortne,
    What an amazing attitude you have through all of this! I had Hodgkin’s Lymphoma at 23 and can relate to some degree, but you have been passing through multiple cancer storms but yet have learned - or chosen - to dance in the rain. You are such an inspiration and I pray there are many sunny days ahead.

  17. Wow Kort! I’ve always thought you were amazing & you just magnified that belief. Your attitude & faith is humbling. Praying for you precious girl. God’s Got this! The battle is His (2 Chronicles 20:15).

    Love you!
    “Ms. Cone”

  18. I have thought about you many times since our paths crossed. You are an amazing young woman and your strength is beyond phenomenal. Many prayers have been said, and will continue to be said for your journey.


  19. Thank you for sharing your story with so many. You are such an inspiration. I pray for your comfort and continued peace. As well as for your family and the many others who support you!!

  20. Thank you for sharing your story. You are such an inspiration. You didn't allow Cancer to steal your joy. My 4 year old daughter had aderenocortial carcinoma and has LFS. Our lives are forever changed. We have a new outlook on life...living day by day and enjoying every precious moment. Some days are hard, but we try to find the good in each day. Be blessed.

  21. Kortne.
    I watched you grow up and so admired the pretty little girl who was so poised, kind and vivacious. I watched how you maintained unselfish friendships through high school and college. You totally inspire me
    As Mrs Hobbs said.....YOU DANCE IN THE RAIN MY DARLING
    I adore you

  22. What an inspiring story about an ugly disease...CANCER! Kortne, having watched you grow up and knowing your amazing family, I know you and God have this battle whipped! Just know that you've had my prayers through this struggle and I will continue lifting you, Brigham and your family up to God. Continue on the path you have chosen as the brave, courageous, strong and beautiful young woman that you are! I will be here cheering you on! Love you!

  23. Kortne,
    I believe you & my daughter Steven the same age! 28!! I remember your Mom Tonya being pregnant with you when I was with my daughter. You are such a strong willed person, with such courage! I admire you so much for that strength! I try my best to keep up with your posts, and pray for you & your family. You have already had such accomplishments, that are wonderful. I can’t imagine what thoughts and feelings you go thru but want you to know, you are thought of, & lifted up before our GOD! You are bright & beautiful and have a strong testimony to Give GOD the glory, and stay on this course of courage & blessings! Helping others is where our greatest blessings come from! Keep living from day to day, as we all should do, but Carpe Diame sweet lady! I pray for and hope all the best for you!

  24. Lsorry about the spell check... it puts in its own words. Steven in the first sentence should be my daughter are even the same age.
    And then Carpe Diem!

  25. Thank you Kortne! I have known you and your wonderful family for many years and for your whole life whole life. I have respected and admired your dad since we first met. He has been my friend and mentor.But I now have a new hero in the Walsh family...you! You are not only an amazing young woman with an amazing story, you have given hope to all that reads this blog. God does have a plan for us (you) and it may never be fully disclosed to us until we come face to face with our Father in heaven. But I am sure Kortne that He is so proud of you, your courage and your gift of Hope to all who know you. He has blessed you in so many ways but especially with a heart and willingness to love and care for others...even in your tough times. My day was better today because of you.... thank you and I love you. My prayers are that God will heal you and cancer will leave your body and your life. I pray this is His will. But until that moment comes, I pray that you will continue to fight the fight, run the race and be a beacon of light to all who feel their life is darkened and who are afraid. Blessings Kortne. I am so glad God brought you into my life!

  26. Kortne, you amaze and inspire. The grace with which you handle everything is just incredible. I cannot imagine going through any of the journey you have experienced and I just think you are fabulous and fearless! I miss you!

  27. Kortne you are beautiful inside and out. You are so brave and strong. Truly admire your strength and perseverance Thank you for sharing your story I pray for many more memories, trips, pictures, sloppy dog kisses, mac n cheese for breakfast and a chance to live your life. God bless and keep you as you continue this journey. You are such an inspiration to us all!!

  28. Kortne,
    Have thought so much about you. Thank you for sharing your story. You are an inspiration to all who know you! May you stay under His Wings and find, peace, joy and refuge there! Praying for you! Psalm 91:4 He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.

  29. Dear Kortne,
    You are so beautiful, inside and out, and so inspirational, and so wise. Clark and I pray for you before each meal, and also during our own personal prayers throughout the day and at bedtime. Your faith is so great and we see how you trust God. Keep on keeping on, dear Child of God, knowing you are loved with an everlasting love.✝️??❤️Donice

  30. Kortne- you are truly amazing and such an inspiration. We continuously pray for you, Brigham, and all your family and friends who love and support you. Love and prayers from the McClellans!

  31. I can not imagine what you have went through in your life ! You are such an inspiration. Your strength is amazing. I will pray for you . Your love of God and being so positive through this makes me want to be a better person. I am so happy your brother matched you. Many prayers for you .

Leave a Reply

Your email address will not be published. Required fields are marked *