Have you seen my T? My Journey with Lynch Syndrome

Hello Tumblr People,

I am so blessed and proud to announce that I have accepted a job as a Pediatric Emergency Room Nurse at St. Louis Children’s Hospital starting June 13th, 2016. 

I was so blessed to be able to choose the area I wanted to start in and with my dream of being a pediatric trauma nurse as well as the appeal of working straight nights, the emergency department sounded like the best fit for the time being. Since accepting the job, I have signed my first apartment lease and I am quickly trying to figure out how I can relocate my entire life to a new zip code in less than 47 days. Add that to juggling the end of the school year with graduation, tests, projects, NCLEX preparation, NCLEX registration hurdles, and finishing up preceptorship and I am pooped to say the least. 

School is going great! I found out I am graduating Magna Cum Laude and there is currently 29 days left until graduation which is crazy to even think about! I have so many papers and projects to accomplish in the next 29 days so I am just going to buckle down and get as much accomplished in my free time as I can.

My health has been alright. My most recent visit to Mayo showed my PCOS is still improving, no evidence of abnormal paps, and pelvic ultrasound was unremarkable except for two or three smaller cysts in my left ovary. I finally have my own copy of my pedigree thanks to my genealogy visit with Mayo and my dermatology visit was completely benign. Literally great news for a visit! I just cancelled my upcoming GI visit to Mayo today. The financial struggles on top of the uncertainty involved with the move and lapse of insurance due to the job change just increases my anxiety. I would rather put my health on the back burner for a few months, get myself established in St. Louis, and then revisit the colonoscopy. As for right now, I feel comfortable establishing myself first, but I am promising myself that I will get my colonoscopy and endoscopy before the end of the year! Scout’s honor!

Hello! Long time since I have updated. Im officially in my last semester of college. Running through the rings as I finish school, keep up with work, do my 168 hour preceptorship and apply/interview/freakout over my upcoming career. There are 93 days until graduation. I have interviews at the University of Iowa at the end of this month and at St. Louis Children’s Hospital in March. It’s overwhelming but I am so very blessed to have interviews and companies interested in investing in me. Pediatric Cardiology is my focus right now but pediatric emergency has been catching my eye as well. 

As far as my health goes, its been okay. I’ve had my first colposcopy and it still hurt less than the mirena. Imagine that. I have my Gyn appt coming up at Mayo at the end of March. I’m kinda being bad about my GI check up. Funds and available time are very very low right now so I don't really have time to go spend a week in a hotel. Im still fighting with the last Mayo bill. I’ve stopped going to counseling cold turkey, which maybe wasn't the best way to exit, but honest to goodness I don't have time for it! I don't have time for myself right now, much less time to go talk about my feelings. 

I’m living on my own right now while still in the dorms and it’s an adjustment. I wish I could have a pet or something to keep me company but it’s only temporary.. only 93 days. It’s like a test run for my first year as a nurse.. I’ll just have a friend to keep me company.

We lost another Lynch member of our family over winter break. My Uncle Joe Sexton- the first member diagnosed with Lynch in our family- Passed away December 31st, 2015. I had the privilege of providing in-home hospice care for him while he was passing. It was amazing to be able to use my CNA skills, my nursing knowledge, and my personal experiences with death to help make his passing comfortable and quick without suffering. It is hard to believe that my mom and I are the last two living known relatives with Lynch. It makes you think of your own health, your own morbidity, and whats truly important in life. I am truly grateful for my Uncle- his last words to my mom and I were: “Never stop fighting” and thats exactly what I plan to do.

So a quick update. Junior year of nursing school is finished. I finished with three B+’s! A new record! But all kidding aside, this was a tough semester. If you would of asked me three years ago. I would have told you a B in any form or fashion was unacceptable and would not be on my transcript. But honestly, life happens and so does nursing school. I’m proud of my accomplishments and thats all that matters.

I want to talk for a minute about shitty things (not literally, figuratively). Shitty things like break-ups, less than great report cards, or just interactions with shitty people. I’ve sampled one in each category over the past two months and all I can say is that I’m grateful... seriously. Fairy tales don't always come true and the guy who says he sees forever, suddenly remembers you have lynch and  “can't bear to bury a great love”. It’s bullshit. But it was his excuse. The point is I’m thankful. He allowed me to step outside of my shell and proclaim (well to Facebook, mostly) that if you can’t accept me for all that I am- every extra pound, reddened blemish, broken DNA, and frizzy flyaway- you don't deserve me in your life and I have no problem showing you the door. I’m thankful that it took this experience for me to finally find my voice and set my standards in stone. It just goes to show you that good can be found in a shitty experience.

I never posted the results from Mayo. So here goes. After tests and pathology, I am good to go for another year. Prevention won again and the two flat polyps found with the blue dye (thank god for Chromoscope Colonoscopies!) were removed before their dysplasia could cause issues. Fantastic news!

I wanted to discuss the Mayo Clinic. My fears, worries, and frustrations were relieved as soon as I spoke with the GI specialists on my care team. For the first time I had doctors that knew of Lynch Syndrome, the disease process, and the reasons for the screening tests. I was so amazed at the care they gave my mom and I. They encouraged us to move our yearly screening care to them. The premise is that my mom and I will go up to Minnesota for one week in April or May and get all of our yearly screenings done in one single swoop.

I found out that I will be able to keep my female organs until 35, 8 years longer than I was expecting. This was a huge relief as I felt the pressure of that ticking clock breathing heavy on my neck. I feel that I have time to fall in love and enjoy an engagement, a wedding, a honeymoon period, and then the joy of pregnancy. I cannot tell you how much of a dream come true it is to be able to do things the “right way” and find the one that matches my heart.

The OB/GYN discussed Preimplantation Genetic Diagnosis and the Invitro process. We talked about it, discussed the different methods being used, the costs involved, and the pros and cons. Dr. Marla Wick took her time to discuss the methods completely and gave me the necessary information to make an informed decision. With my trip to Mayo, the relief of knowing that there are providers that know about us, and care teams that collaborate and work for the best interest of the patient, I feel comfortable, for the first time ever, about having a child/children the “natural way”. 

I experienced doctors and disciplines that communicated and physicians that stayed in the room with us, discussed our feelings, our genealogy, and communicated upcoming tests, preparation, and results. I had an amazing visit with qualified, educated, and patient minded physicians. I cannot boast more about my trip to Minnesota and the fantastic patient care we received. 

Lastly, we have one member of my immediate family that is currently awaiting Lynch Syndrome test results. My brother was encouraged by his doctors at the VA to get tested. He finally agreed after hearing that I had been sent to Mayo Clinic and realizing for that Lynch was a big deal. We are still waiting for his results but I am hoping and praying with every ounce of my being that he does not have Lynch. Nothing would make me more happy than to know that he doesn't have to struggle with this condition.

I'm not even going to lie, I have been down in the dumps lately. My depression has kicked in and brought me to an all time low. I never understood what someone meant when they couldn't get out of bed or they lost interest until it happened to me this past weekend. I sat racking my brain in regards to what could have triggered it and I have no freaking clue. Things have been stressful lately between school, work, money problems, and recent car troubles. But I'm used to stress, were good buds. I just cant figure out what set it off. So I took this question to my counselor, and she explained a couple of things that resonated so deep within me that I felt I needed to share. In addition to her wisdom, I have scoured the lovely and vast world wide web for more information.

1. People with chronic illness are more susceptible to depression and anxiety. I am no stranger to chronic illness. Born with Severe Asthma and Reactive Airway Disease and spending the first three and a half years of my life in and out of the hospital, I saw the toll it can take on a person and their family. When I was diagnosed with Lynch in December, I understood it for myself. There is this constant gnawing at the back of your subconscious that heckles and taunts you with all the scary details of your disease. It becomes muted through keeping yourself engrossed in work and school but it gains its megaphone in the quiet. In the time when you've pressed the pause button. It is one of the hardest things to re-press play once you've paused. In my case, that's when the depression seeps in like the opportunistic pathogen it is, swirling and swooping down into the home base that makes you who you are and removing the fuel from your motivation and socialization centers until you're in your bed, under covers, cradling your teddy bear as tears stream down your face that come from unknown and incomprehensible sources. 

2. When you have depression and anxiety, you don't need a monumental event to occur to spiral you into depression. It lives in your bones and it comes in cycles. I like imagery. I imagine the depression stationed within the abandoned epiphyseal plates of my bones looking for the moments when I've begun to slow down from the stress of school and work. At the first sight of relaxation, it swoops in and sets this sadness in the core of my body. Now these scroungers are sneaky ass mo-fos, they can hang out in your core for a while, like weeks and months, and they slowly chip away at the little things until the little things add up to one big meltdown. 

3. The best way to catch when things are going downhill is to keep a daily journal. You dont have to make it elaborate or anything too in depth. Sum it up in a sentence. Today was ______. Watch for patterns or triggers.

4. Notice your triggers. We're human, we have triggers just like we have turn ons and turn offs. Find your depression triggers and be on high alert for them. When they start appearing, have a plan of action. For example, my triggers are: withdrawl, excessive sleep, unable to do what I normally do, insecurity about myself and my relationships, anxiety, staying in bed for long periods of time, negative attitude, and I start wearing coats and hoodies all the time. Knowing my triggers, I can work to surround myself with my family and roommates, spend time outside, go workout, or read for leisure. 

5. It's okay to not be okay. Our society is obsessed that we must always be "okay" or "fine". An individual that shows their emotions is considered weak by main stream opinion. Mental illness is slowly becoming a less controversial topic and craziness isn't as commonly associated with mental illness anymore. Now I'm not saying that we all become Eeyores (he is my absolute favorite character!) but we can say the truth and still be optimistic. I commonly use "I've been better but I'm still kicking" or " I've been a turtle in a peanut butter patch lately, but i"m making it" and when people ask whats wrong I normally just shrug and say "just the strugs". I choose to unload on specific people and if you're not that person, you unfortunately get the shoulder strugs shrug. Big shoutout to my best friend. She gets the brunt of it unfortunately!

Hello everyone! Its been a while but I'm back to write an update.

Its with a heavy heart and teary eyes that I announce that my Grandma Sexton, my oldest relative with Lynch Syndrome, passed away on April 5th, 2014. She succumbed to a battle with late stage Pancreatic, Biliary Tree, and Liver Cancer. My grandma was one of the strongest women I have ever known. She fought with ovarian, uterine, colorectal (several times), kidney, and skin cancer throughout her lifetime. She taught me that life will hand you challenges and that it becomes your individual decision to pick up the pieces and keep moving forward. She taught me that Lynch Syndrome isn't a defect or deformity but a chance for me to become an advocate. She truly was one of my absolute favorite people. She could brighten the worst of days and I owe her so much credit for changing my perspective regarding my diagnosis. To say I will miss her is an understatement and I am so blessed that we had the time to say our goodbyes and allow her to go with dignity and peace. I have a new appreciation for hospice nurses and the compassionate care they give their patients and families. My grandma was always my biggest supporter of my dreams and ambitions and I cant wait to make her proud.

I finished my sophomore year of college yesterday and after the hectic semester that it has been, I am proud to announce that my GPA is still sitting at it's 4.0 perch. I am taking two summer courses, microbiology and environmental science, and I begin the nursing program in the fall. With my diagnosis of Lynch Syndrome and the recent passing of a few family members, including my Grandma Sexton, I have found new determination and I'm motivated to continue on my track to get my BSN. I was afraid that the recent events would change my career plan but it made it so much more desirable. So I'm going forward, full speed ahead, head first into the nursing program. But there's something different about me lately and I want to keep it this way. 

When I was first diagnosed, I was ashamed, confused, frustrated, and felt like I was hiding a secret from the world. How could I be broken? How could I have this damn gene too? Well, that attitude has changed with some reflection. I'm taking a different stance. Forget being the victim and hiding my secret, I'm ready to scream it from the friggin' rooftops. I want to speak up for early detection, genetic testing, Lynch Syndrome Awareness, and prevention. I'm not going to be ashamed of it anymore and I'm not going to allow it to hold the power it once held over me. I may have Lynch Syndrome, but if I mind my p's and q's, it wont have me. 

In regards to awareness, there is something that I want to see change. I would love to see Lynch Syndrome Awareness apparel, wristbands, car magnets, and any other sort of media. I would love it if Lynch Syndrome became as well-known as any other cause. I have some ideas for wristbands and Tshirts but I'm a college kid with no knowledge of business aspects or how any of that stuff works. If you know how that stuff works, lets talk!! I currently wear a colon cancer awareness wristband and when people ask about it, I tie in the Lynch Syndrome and I say why I wear it, but how cool would it be if it didn't have to be a tie-in. I would love nothing more than a Lynch Syndrome Awareness wristband and it would seriously put the frosting on the cake if the proceeds could go to the detection, prevention, and awareness efforts. I remember going to get tested and wondering if insurance or if I could afford it. What if money wasn't the issue? I would love to become the Bob Barker of Lynch Syndrome... 

*cue cheesy game show music* remember to schedule your yearly prevention screenings and get your colonscopies! Have a good day folks!

Just a pipe dream but I'm seriously becoming passionate about this. I'm going to investigate further and do more research to see if anyone else has these ideas or passions. 

Lastly, as a personal health update, not much has changed. I went to my PCP this am and I learned that I have officially lost 60lbs and I am back down to the weight that I was my sophomore year of high school. I feel good and I feel skinny for the first time in probably ever. I still have 40 to 60 lbs still to lose but I am so proud of myself and it is something I never thought I would say. I am done with Dr. Appts for a while. (I can hear my insurance company cheering from here!) I am becoming more apprehensive for my OBGYN appt in September but I just keep remembering that prevention and early detection are key. I rejoice with every good check up because I know it can change in an instant. I am trying to keep my apprehension at bay because I realize that there is going to be times when the news isn't going to be good and so I'll save all those nerves for then. Until then, its just school and work as usual. As always, if you have any questions, please feel free to contact me and have a blessed day.

Until we meet again! :) ~Katelyn