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!
I got home, broke the news to my family over the phone (which was even harder than I had imagined), met with my doctors, set up a plan of attack and again went into action and scheduled a surgery for just a few weeks out. Then, I got another setback, my cervical biopsy tests came back. I did not have cancer, but there were “abnormalities”. Given my other cancer diagnosis, this was set on the back burner and I was told to get another biopsy in November. This seemed to be the least of my worries and I quickly forgot about it.
Then on July 12th I evicted my cancer and my thyroid. Which, by the way, that tiny little butterfly shaped organ does a heck of a lot for your body! It stores and produces hormones that affect the function of almost every organ in our bodies. Thank goodness for modern medicine and that little pill filled with synthetic hormones I take daily.
Overall, my surgery went well from a cancer removal point of view, but there were some complications. One of the nerves that controls my voice box was slightly damaged because the cancer tried to take that from me too! However, my talented surgeon was able to save it and I regained my voice, mostly, a couple months after surgery. I still do not sound like I did before and I weirdly can feel myself talking, but I am alive, I can talk, and that’s what matters.
While battling with all this, my son, husband, dog and I also relocated from New Jersey to Seattle due to a new military assignment for my husband. This delayed my post operation scans and follow up biopsy until we got settled and I found a new team of doctors who actually knew what LS is, which is harder than one would think. I was able to find and meet my endocrinologist, gynecological oncologist, gastroenterologist, genetic counselor, dietician and PCP!
With that hurdle behind me, I just had my first post-surgery scan and am happy to report that it came back all clean! I am almost 6 months cancer free, however, the recovery has not been a cake walk. Finding the right dose of thyroid medication has proven to be a challenge. There was a point where my average resting heart rate was at 108, and I have desk job! Thankfully my doctors got that sorted, I felt like I was having a 24-hour/7 day a week panic attack. For now, I still have trouble remembering things, I have emotional swings like you would not believe, and I have been struggling with weight gain, 18 pounds and counting. So, if you have a good thyroid, treat it well, it sucks not having one!
Now that thyroid cancer is behind me, I am now facing my abnormal biopsy issue, which brings me to what I know will be my third opportunity to comeback stronger than ever. I will be having a hysterectomy with a bilateral oophorectomy in 2019, date TBD. This decision was not one I entered into lightly, as I had not ruled out the possibility of having a second child and the fact I will wake up from surgery thrown into menopause scares the crap out of me. However, it is the best option for me to make sure I see my son grown and I live a long and healthy life. You see, my aunt was diagnosed with Stage 4 cancer at age 50 and succumbed to the disease at age 51 and various other members of my family also have had cancers. Therefore, given my abnormal test, my increased risks of female cancers due to LS and family history, this is my best option. So right now, I am focusing on my nutrition and exercise and trying to get a healthy and strong as possible, so as I go through this next change, I will be set up for success and will recover quicker and easier.
Also, now that February is upon us, I am beginning my round of annual screenings yet again. Filled with anxiety and dreading getting another call that tells me I have cancer, but knowing that if I do have cancer, it will be caught early and I will kick it’s butt yet again.
I can’t change my genes. I can’t change my diagnosis. But I can change me. I have all the power and control over my outlook, my actions and my gratitude and I’m grateful for so much!
I choose happy. I choose to stay positive though all this crazy and stress. Yes, I cry; yes, I have moments I am overwhelmed; yes, I wish this wasn’t my story. But it is, so I’m rolling with it, staying positive and LIVING!
I will get treatments, I will get my screenings AND I will grow stronger. I will live to conquer more than I thought possible. I will make a difference. After all, I am AliveAndKickn and I will not be that easy to take out of the game! I am still a mom, wife, daughter, niece, aunt, sister, cousin and friend. Still living with Lynch. Still smiling. Still fighting. Still me.
