Lindsey: I’m not just surviving I am thriving!

My first “comeback” started on Valentine’s Day 2018. On this day, I sat across a table from my genetic counselor and where she said something that would change the course of my life, “Lindsey, you have Lynch syndrome”. My immediate response was, “what the heck is that???” I had no idea…but I sure do now.

Lynch syndrome (LS), put simply, is a genetic condition that increases a person's risk (my risk) for various cancers. Most of us with LS get those cancers at very early ages, much younger than the general population. To add fuel to the fire, I was also told that I was late to the screening party given the average age of cancer diagnosis for LS patients at my “advanced age” of 35. I am not going to lie, I was freaking out!

You see, I was scared because in October 2017 my body starting acting weird and telling me something was wrong, but no doctor could figure out why it was doing what it was doing. The standard suspects were all ruled out up to this point, but now, there was a real chance that some cancer, somewhere hidden in my body was the cause. If that realization doesn’t freak you out and wake you up, I don’t know what would. I wanted to crawl into my bed, feel sorry for myself and stress about how I might not see my 3 year old son grow into the great man I know he will become. That was just not an acceptable option for me, I did not want to squander one second of my life any longer. My only choice was to move forward and figure this out! This was the start of my first comeback. I deemed February to be my “self love” month, I was going to focus on making sure I would be around for years to come.

I jumped into action, got on the phone and set up what seemed like a whole month’s worth of appointments with oncologists, gastroenterologists, and specialists of all kinds. I did all my screenings and got looked over, poked, probed, scanned, prodded, imaged, put through many different procedures, and so much more. Then, I began the hardest part of my LS diagnosis, calling my family. Since LS is an autosomal dominant genetic mutation, that meant there is a 50% chance of inheriting it from a parent, which also means that others in my family could have this as well. Given the history of cancers on my mom’s side and lack thereof on my dad’s side, it was pretty clear the mutation came from my mom. Devastatingly, she passed away the year prior, so we could not have her tested to confirm. Also, both of my grandparents and all of my aunts and uncles, except for my one Aunt, had also passed away. Therefore, I needed to call all of my cousins and educate them on LS and what that meant for them and give them the option to get genetic tests themselves. I wanted to make sure my family members knew their risks and could get the best care they could. Calling each person and telling them was harder than I thought. Some opted not to get tested, some did. Thankfully no one who had been tested has come up positive. I have never been so happy to be alone in this journey!

The results of my many tests started rolling in, and they were coming back good. The cancers I was at higher risk for, colorectal, endometrial, ovarian, gastric, (shall I go on??) did not seem to be in play. Which is good, but I still had no answers to my body telling me something was wrong. My doctors kept searching for answers, kept testing, drained me of what seemed like most of my blood, then in June 2018 took the cautious route, thanks to my LS diagnosis and ordered an ultrasound of my thyroid.

In June I got the opportunity to head to Denver, Colorado to give a workshop at a conference. The conference went well, work was going great! On June 28th I was at the Denver airport, happy with the conference, happy to be headed home to spend a week with family who was flying out to visit for the first time since moving away from California to New Jersey (my husband is active duty military). Just as I was getting to the security checkpoint my cell phone rang, it was my endocrinologist. I answered it, fully expecting to get the same answer I’ve gotten a million times at this point, “good news, everything looks great. Bad news, we still have no answers.” I had mentally prepared for this, I was ready to ask what’s next, I was not going to take no answer for an answer. When she said hello, I heard the disappointment in her voice, so I kept walking towards the airport security checkpoint as I knew the call would be over quickly and I would get no answer on this call. Then she said something that didn’t make sense to me. I asked her to repeat it, she did, “Lindsey, I am sorry, you have papillary thyroid cancer.” I couldn’t move, there I was in the airport, surrounded my people, but so very alone. I think I even asked, “you mean I have REAL cancer?” Like there is a fake cancer or something. I was in shock, I looked around and found a place to sit because I did not trust my legs. As I sat there and tried to hold it together, the bustling airport, a scene I am very familiar with and almost numb to, came alive. These strangers surrounding me became people. They were mothers, fathers, daughters, sons, wives, husbands, sisters, brothers, friends. I all of a sudden began to wonder how each one of these people would shape our world, shape our community, and shape each other. With tears streaming down my face, I wondered how much more impact I could have on this world, how much longer would I be here? A year, 5 years, 50 years? At that moment, I started my second comeback. I determined, I would not take this cancer lying down, nor any other. That day, I was going to change my life, be as healthy as I can be and make cancer realized it picked the wrong girl!