Navigating Life with Lynch Syndrome
You're here! Whether it is something you typed in a search box or you recognized my name and thought I know her, it brought you to my blog. Health and medical diagnosis' can unexpectedly add a path of darkness to an already existing journey we have been on all our lives. But think about what that little bit of darkness can become. It doesn't need to be a sad, lonely, depressing dirt road off the beaten path from every day life. We have a choice. As I start this blog I will take you through the phases from when I first heard I had Lynch Syndrome and how I realized it is up to me to ensure I always choose Life over Lynch Syndrome.
Initial Reaction 😳
When I first heard I had Lynch Syndrome I was so confused, mainly because I had no clue what it was. Then, I opened the results folder and reading through everything felt like I had just entered the twilight zone. So many cancer risks, some I had never heard of. So much highlighted in red. It was all I could think about. The more I thought about it, the more questions I had. What do most of us do when we have questions.....Google here I come. I couldn't help myself. Waiting for appointments to ask questions was making me crazy. I needed information immediately. I found myself in an endless cycle of worry, fear and anxiety. The more I read the more nervous I became just wondering what was next.
First Appointment - Genetics Counselor 😕
Finally the appointment I was waiting for. Time for some answers and hopefully some direction. As I was leaving the house I checked to make sure I had everything I needed.
✅Folder with results from the doctor
✅List of questions
✅Notebook and pen to take notes
I was ready. Let's do this! Little did I know this would be a two-hour meeting that would make my head spin and ultimately have me feeling like I was in a fog with no visibility. Sometimes we push aside our emotions and fears so we can be strong to confront something head on but I learned in this meeting that it's okay to be scared. I realized on the outside I was all tough and ready for this meeting but on the inside I was crumbling with every other statement the genetics counselor made. I walked out of there with very few notes having only asked only a couple of the several questions I had. Fortunately my boyfriend (who is now my amazing husband!) and my mother were there with me. They asked questions and were later able to help me process what the next steps were going to be.
So Many Appointments😵
Then came the lifetime supply of doctor appointments. I went from hardly ever going to the doctor to needing a calendar just to manage the Lynch Syndrome. I had suddenly become a 35 year old with more doctors than her 66 year old mother. Ugh the aggravation. You know exactly what I'm talking about. You know you need to make appointments but you put them off. Well gone were those days. I was trying to schedule appointments around my work schedule and my son's after school activities and just life activities that are more fun than going to the doctor. That first year was the most difficult. I was always a career woman and I loved it! I did not have time for all this but ultimately I knew I had to make the time. Those with Lynch Syndrome who have never had cancer are called previvors. You know why? Because the cancer just hasn't happened yet. When it is put that way why wouldn't I keep up with the appointments. Then I was told there was a 50/50 chance I passed this gene on to my son so I realized shame on me if I did not set the best example possible on taking care of myself. The first couple years my husband had to remind me to schedule appointments. Every few years I would add more doctors to my team. More doctors meant more appointments. Yes it became frustrating but somehow I saw past that. Then it was time for an appointment that was not for me-my son turned 18 and it was time for him to be tested for Lynch Syndrome.
Three Generations 😞
My son is now starting his third year at college and at 20 years old his appointments and screenings will be starting. Yes he too has Lynch Syndrome. I am proud to say he is not against doing all the medical tests but he should not have to think about this while in college. I want to do my best to carry whatever burdens I can for him while also educating him on staying health and continuing to do what he does every day. He needs to know the Lynch Syndrome does not have to impact his day to day life unless he allows it to. Then, while mentally preparing myself for that I am continuing my appointments, which seem to be increasing each year and helping my father through what has been a long battle fighting his third cancer from Lynch Syndrome. Other family members have been tested but as far as we know, only my father, myself and my son have tested positive for this crazy genetic condition. Before knowing Lynch Syndrome existed we lost both my paternal uncle and paternal grandmother to cancer. Sometimes it makes me wonder what if we never knew about it at all.
The more that I experience with my father, myself, and now my son through this unpredictable genetic condition, the more in awe I am of just how unknown Lynch Syndrome is. How can so few people be aware of a condition that exists from birth including doctors? There is so much research out there about the overwhelming amount of cancers impacting peoples lives every day yet there are genetic conditions that cause these same cancers with very little awareness that those conditions exist. When I mention it to people I always get the same reaction which is usually what is that?. Then after I explain it they suddenly look sad and apologize feeling so sorry for me. Though I do appreciate the apology because yes it is alot to deal with but I don't want people to be sad. I am sad from time to time but I have been determined to not give Lynch Syndrome the power to cause a life of sadness and neither has my family.
My father is 71 years old, has beat two different forms of cancer and, though the cancer he is fighting right now is rare and was found by chance, he is determined to come out of this a winner. I am 41 years old and am elated to say I have not been diagnosed with any cancers. I have had enough biopsies and scares to make me go crazy but no cancer. My son has had a couple scares but he too has had no cancer. We are three generations of individuals who's bodies can turn on us at any time yet we do not let any of that hold us back.
Positivity and Strength 🌞
Having Lynch Syndrome makes it so easy to spend my days dealing with the normal routines and stresses of life like work, taking care of home and spending time with family while mentally breaking down out of worry and fear. But you know what, that is not healthy for me or my family. I took a different approach. The way I see it, I know exactly what my risks are for cancer. Knowing about the Lynch Syndrome gives me an advantage. It's almost like seeing the future. I am a previvor and I know I will likely have cancer but this is my body and Lynch Syndrome is just part of it. I choose to stay ahead of it as best as I can.
- I eat healthy and stay informed on the impact diet has on the body.🌿🍅🍊🍏
- I find the time to be physically active so if/when the day comes by body is strong enough to fight. 💪
- I read about Lynch Syndrome research efforts to stay informed. 🧬
- I learn about what others are going through with Lynch Syndrome by staying connected with other previvors and survivors around the world. 💻
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