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 atrange 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 .

Mental Breaks and Living LFS, Fannie Shares Her Conference Experience

In April 2018, Fannie attended the LFSA REACH International Conference in Toronto. She shares her experience and the impact it has made on her coping with LFS since she’s been home. We are grateful to Fannie for her time and efforts making the Living LFS Exhibit Table a perfect representation of our group.

What we can learn when the mind can take a break.

Li-Fraumeni Syndrome can be so isolating. It’s a very unique feeling. Being scared all the time that is. My mutant sister Andi describes it perfectly. Most people will want to make you feel better about your horrible situation by saying things like: I too can get hit by a bus tomorrow! First of all, who are all these people that are getting hit by busses on what seems to be a daily basis!? What a weird-ass analogy… But that’s beside the point. I always use Andi’s metaphor to try and explain what it’s like. It’s brilliant and it goes something like this: Of course everybody can get hit by a bus, but imagine that this bus is basically chasing you around town and that it already killed about half of your family members. That’s how it feels to have LFS. You feel like you have to run for your goddamn life every goddamn day.

I have been diagnosed with LFS and brain cancer two and a half years ago. Since then, not a day goes by that I don’t think about cancer, multiple times a day. I have been done with treatment for a year now, but still. Not. one. day. Because cancer doesn’t stop with the end of treatment for any cancer patient. I don’t think you can never be the same after living through something so traumatic. Your body is forever scarred and your heart forever changed. People think you can “beat” cancer, that you can make it disappear, that you can make it go away. You can’t. Once you have it, it’s ever-present. And then there’s LFS. Because when you have LFS, you have to actively look for cancer on a regular basis. How fucked up is that? Worst Where’s Waldo ever…

When I heard that LFSA was organizing a semi-regular medical conference on Li-Fraumeni syndrome, I was excited. Excited, first of all because it meant I was going to get an LFS mental break. For some reason, the thought of being surrounded by LFS specialists and other mutants felt like a well-deserved lull from Li-Fraumeni Syndrome. I guess being with people who really understand meant I didn’t have to justify myself to anyone, not even myself. I almost felt like I was going home to my second family. I’m not one to expect people around me to understand what it’s like. How the fuck would they? I can barely understand it myself. They can’t understand, but they fake it well enough and they love me and help me so much. I can’t ask for more.

Going to the conference also meant I was going to meet some of my favorite mutants. They were all so amazing, but I particularly bonded with my brain cancer survivor buddy, Rowena. Once I started being able to understand what she was saying (that thick accent you guys! English is already my second language, so it was a challenge), I discovered such a warm and super interesting person. While our experience with cancer are quite different, we have a similar way of seeing life. We talked about how it feels to be put on a pedestal by our friends and family, because we are trying to live normal lives despite all this crap. How it’s heavy sometimes, and how it’s a weird situation to be in, especially when you don’t like to hug (neither of us are fans of hugging). We could laugh about super weird/unpleasant stuff, because what in hell can we do about it anyway? We talked openly about treatment, work, how having cancer in your brain is scary as fuck. How some days, we just eat cake in bed to give ourselves a mental break (and because cake cures cancer, of course). It was so refreshing to talk about all of this without filtering anything, because there was no need to. It was pleasant and refreshing to be just two normal chicks eating dinner and talking about our fucked up lives like they were normal.

This morning, when I woke up, I could feel it in my bones. It wasn’t going to be good news. So I told myself “Fannie, you have to channel your inner Rowena and power through whatever news they throw at you”. And then I started laughing. Not because the situation was funny or because I was slowly going insane (which I am, don’t get me wrong), but because I was guilty of doing something that annoys me to no end. I hate when people put you on a pedestal because they you are living life with cancer. Because, let’s face it, we’re no heros. Heros have a choice. We are up against the wall. We have cancer and we are just trying to make the best out of a horribly painful situation. What’s the alternative, really? So instead of trying to be strong, I chose to bring Rowena in my brain and in my heart. Not because she’s kicking ass at cancering (which she is), not because she’s an inspiration, but because she’s my friend.

That’s what the conference did for me. It gave me hope. Hope that medicine will save us all (I give them five years before I start sending them angry emails and breaking random stuff in the streets). It gave me the chance to get a picture with Dr. Schiffman (COME ON!). And it gave me hope that, whatever happens to me, I can find support from people who understand it all. And I think that’s all I need. My family, my LFS family, and hope. Hopefully, the next chapter won’t be so bad, because I can’t wait to attend the next conference. I think a mental break every two years is a pretty reasonable ask.