Working with LFS: When Your Brain Gets in the Way

by Fannie Lemay

I always loved to work. Even when I was cutting carrots at IGA for a living, I loved it. Well, maybe “love” is a strong word, but I still really enjoyed myself. I’m what you would call a power loner. In my personal life, I have few close friends and that’s how I like it. I’m an introvert; I’m not outgoing. But for some reason, it’s easier for me to connect with people when I’m at work. I’m a bit silly and it seems to bring people together. I work hard and I like taking care of my work family. A lot of my self-worth comes from work. I don’t doubt at work; I just do. Well, I did…

First Christmas party at Cossette in 2010 with my favourite proofreader spectacular Geneviève. She taught me basically all I know.

When I started working at Cossette as a translator a little less than 10 years ago, it was my dream job. When people asked me during my college years where I’d like to work once I was done, my answer would always be “in the advertisement”. Of course, back then, I had no idea what it really meant. Luckily for me, the advertising world seemed to fit my personality and my brain perfectly. I was fast and could take the pressure. I found a very patient mentor that taught me to be a decent enough translator to keep my job, and I became part of an amazing AMAZING team that helped me become a better version of myself. Two years later, I became the team’s coordinator, and that was the best gift I ever received.

My brain was perfect for this new job. Because you see, my brain doesn’t work quite right. I have hyperesthesia, which basically means that sensory information reaches my brain faster than the average, and the information is processed in a significantly shorter time. My senses are basically heightened. Having hyperesthesia has a lot of disadvantages. Some days, I can’t stand being touched even by my loved ones. It feels like my skin is burning. I can’t tune out any sounds, so I have to work with headphones or the A/C will drive me insane. If my son is noisy, sometimes I have to leave the room for a while so I don’t get too irritated. I’m very rigid with food brands and if someone removes their shoes, I can smell their feet even if they don’t stink. It just smells like clean feet. Sometimes having hyperesthesia is overwhelming, but most days, it’s a blessing.

My weird brain helped me a lot in my role as a coordinator. Since I had an exceptional memory, I could manage a lot of projects simultaneously without needing to take notes or setting reminders. I loved going the extra mile to make sure everything was running smoothly, and I tried to protect my team and the work we were doing with all my heart. Because you see, working in an ad agency is a totally bipolar experience. I’m not sure how to describe it… It’s just so hard and so easy at the same time. It’s great and horrible. I always say it’s not a real job, except, fuck, it is. And I love it. And it seems to

My brain post-surgery. My neurosurgeon described the cavity left by the removal of my tumour as gigantic.

like me too. Well, it did…

When my neurosurgeon showed me the MRI of my avocado sized tumour, I thought my life was never going to be the same. But, turns out, that’s not what happened at all. Three years later, my life is pretty much exactly the same. I, on the other hand, am not. I am in pain almost all the time. Most days, I can deal with it. Some days, I can’t. Even now, more than one year after my last treatment, I’m still exhausted pretty much all the time. The kind of exhaustion that makes your legs hurt. Some weeks, I can have three “good” days in a row and, if I’m lucky, I can pull a fourth one out of my ass, but then I pay for it and I’m stuck in bed for 24 hours. Because my body never lets me forget that I’m broken. That this shitty treatment broke me.

My brain is also damaged. You can’t really tell from the outside if you don’t know me (or maybe you can), but it is. People tell me it’s just part of getting older, like chemo and radiation had less impact than the passing of time. Like I somehow aged 10 years in 12 months. I guess they want to make me feel better or more normal. It’s not working. Not even a little. But they mean well, so it’s nice. But I have to take notes now. All day, every day, I take notes. So I don’t forget. I FORGET STUFF NOW. A LOT. Not a lot actually, but a lot more. If I get interrupted, I lose track of what I was doing sometimes. When it happens, it hurts me, deeply. I was always able to rely on my brain, but not anymore.

All of this made my return to work very difficult and emotional. I’m not the same Fannie that left Cossette two years ago. I can still work and my new team seems to think I’m doing well. They are awesome and understanding. They are insane, and human and lovely. They laugh for real and eat cookies in the middle of the week. They are a little haven in this crazy place that is Cossette. I like them. But every time I forget something or miss something I wouldn’t have missed before my treatment, it hurts me. A lot. When I have to go home at 3 pm. because I’m too exhausted to do a good enough job until 5 pm, it hurts me. When I can’t be warm with my coworkers because the damn voice in my head screaming CANCER is just too loud that day, it hurts me.

This is Louise. She’s basically the soul of Cossette. She helped me feel confident that I was still worthy of keeping my job when I was at my lowest. I will be forever grateful to have had met her. I know returning to work is hard for any cancer patient. Some of my dearest friends had to go back to horrible working environment where they were judged and bullied. It’s not my case. I am very lucky to have landed in a company that takes care of me during this trying time, but it’s still hard. I guess I still have to make my way to the fifth stage of grief: Acceptance. When I started to live with Li-Fraumeni Syndrome, I had to let go of a lot of things. My freedom, my breasts, my innocence, having more kids, the ability to stay awake past 9 pm, my hair, but also, my career. I can’t seem to let go of what I thought my life would be. I have to redefine what I am as a wife, a mother, and an employee so I can be done with the constant guilt. But it’s hard you guys. It’s fucking hard.

If you are living with cancer and about to go back to work, I hope you can find a place that welcomes your new normal. Because let’s face it, you have other stuff to be worried about. Also, be kind to yourself. You are still worthy and your journey probably made you a better human in a lot of ways. That’s a very special gift. And if you work with someone that has a chronic disease, please be kind. Sometimes, you can’t tell from the outside how much they hurt inside…

Interesting fact: Cossette is the ad agency responsible for creating the amazing campaign for Sickkids. The Sickkids Foundation is a very important institution for the Li Fraumeni community. This is Sickkids VS Undeniable, one of the most powerful spots I have ever seen.

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 .