It has been over a year now since my journey started. The journey to my new life, and my new normal.
This whole journey really started with my Grandma Billie, my dad’s mom. Growing up, she was my biggest fan and she never let a second go by without telling me. I went to her for everything and she always lent her ear, her hugs, and lots of yummy food! In March of last year, after many health battles, my Grandma sadly passed away. Before her passing, she had mentioned a gene mutation she carried, but with everything going on it slipped our minds. Plus- this ‘mutation’ she described sounded CRAZY. Like she looked up her symptoms on web MD and it told her “you have 2 hours to live”, crazy! Some time went by adjusting to her passing and grieving our huge loss. About two months after her passing my mom was at work (in a local hospital) when a doctor approached her. It was my grandma’s previous doctor. She said, “Your mother in law was positive for this gene. You need to get your husband tested for this gene mutation! If he is positive you need to get your kids tested too.’ She went on to explain this mutation called CDH1. CDH1 is a gene mutation that causes hereditary diffused gastric cancer as well as lobular breast cancer. Carriers of this gene have up to an 80% chance of having stomach cancer in their lives and about a 50 % chance of having breast cancer. Stomach cancer is the main focus for this gene since it is so hard to detect and treat. Diffused Stomach Cancer doesn’t form masses. It spreads within the lining of the skin in your stomach and throughout the rest of your body. There really is no good way to test for it and you can’t see it with scopes until it rises above the skin or causes visible spots, which, at that point, makes it at least stage 3. How do you prevent this cancer then? We all wondered… the answer made our jaws drop. To prevent this cancer, the only thing that can be done medically is to get a total gastrectomy also known as the full removal of your stomach.
I wanted to laugh. Are you kidding?! That sounded absolutely INSANE!
I wanted to laugh, cry, and jump on google to do research all at once. My dad, the possible carrier of this gene already had brain cancer.. there’s no way he could have this too!
Well, as they told us- he sure did. He had this extremely rare gene and high-grade brain cancer of an unknown cause. Now, it was my little brother and I’s turn to be tested. We both had a 50% chance of testing positive for the gene.
I knew I was going to test positive.
I told everyone before I even tested… ‘I’m going to have it. I feel it. It’s going to be positive.’
On one of the most nerve-wracking days of my life, I went into the oncology office that went to with my dad dozens of time for chemo and radiation. Only, this time- I was the patient. I saw all the nurses that knew me as ‘Mick’s daughter’. They looked at me with worry, sympathy, and concern.
‘You’re positive’ I told myself, not really knowing if I was using that as a defense mechanism or really believing it.
Two weeks went by after that test. Those two weeks felt like months. I checked my results every day on my computer, logging in with every muscle in my body tight. I waited for the calls every day thinking ‘today will be the day’.
The day I got the call, I missed it. I got it as a voicemail. An awful voicemail that told me exactly what I already knew. ‘Unfortunately, you are positive for the CDH1 gene’.
I collapsed further into my seat, my friends supporting me, hugging me, silently giving me all of the encouragement I needed.
I decided that day was the day I would become strong.
I had never felt strong before. I had felt a lot of things, but never strong.
Little did I know how strong I would really become.
After testing positive, I was able to connect with a WHOLE COMMUNITY of seahorses (they are our mascots since they are stomachless too!). Through them, I found the best study in the country for my gene. It was a study at the National Institute of Health run by Dr. Jeremy Davis in Bethesda, Maryland. This scared me. I had never had surgery alone yet a surgery in another state. After a lot of convincing myself, I flew out last July for my very first meeting with my soon to be team.
-I have to add here, if you are reading this and early in your journey with the CDH1 mutation gene, go see Dr. Davis. You won’t regret it. He is the most amazing doctor and his team perfectly matches him. They are angels. –
My meeting went great. The team was everything I could ask for and more and now the preparation would really start.
In my first apointment, I had an endoscopy where they took about 50 biopsies for research and to test for cancer. Side note- this was my first time ever being put under and I was completely mortified. I was dry heaving and it took a nurse anesthetist playing Beyonce songs on his phone for me to calm down. The scary things about the biopsies are that they are not full proof. You can’t rely on them to tell you if you have cancer or not. The cancer, like I said, is hidden so if one small area with cancer is not biopsied it won’t show up in slides.
About three weeks after my appointment, I was out for a fun day with my best friend and I saw the phone number pop up on my phone. My heart dropped. I stepped outside and I heard the words no one wants to hear… and again that word ‘unfortunately’.
‘Unfortunately, we found cancer in your biopsies.’
I would have continued with my Total Gastrectomy regardless due to the high occurrence of the cancer but this solidified it all for me and I scheduled my surgery.
December 13th.
I decided to schedule it on my Christmas break from nursing school so I could have the 2 week Christmas break and then take 2 weeks off of school… quite the feat.
I started to prepare… but how? How would I prepare for something like that?
I made a game plan.
#1 See a counselor to become mentally prepared
#2 Eat every type of food possible, and as much of it as possible.
#3 Repeat step 2 over and over until satisfied.
Seeing a counselor was the best thing I ever did for myself. If you are facing any challenge in your life, like we all are, I encourage you to find a good counselor and see them regularly. I credit so much to her and her help.
After all my preparation I had successfully eaten everything I could imagine, put on a happy amount of weight, and felt ready.. like, really ready… like, GET IT OVER WITH PLEASE ready.
I had a Second Thanksgiving going away party to eat even more food and then went on my way with my husband, mom, and dad by my side. We made the 5-hour flight and 45-minute drive over to Bethesda Maryland and I checked into the unit where I would be staying and the room where I would be healing.
Seeing the unit is where it really hit me… Adult Oncology Unit.
I was scared, overwhelmed, and then… I wasn’t. I was given a tour of the unit, I made friends with my nurse, and I felt ready for the next couple days of tests before my surgery.
Those next two days were hard. They went by slowww. I made my little room as home-like as possible, Carson stayed the night with me in the cot next to my bed and my parents would stay the days and eat all meals with me in my room. I felt ready, supported, and surrounded by love.
The night before my surgery… It’s here already?! I braided my hair, washed my face, and tried to diffuse every essential oil POSSIBLE to help me sleep. I had to be up and ready at 6 am.
When it was time, I was wheeled to pre-op where I met the most vivacious, hilarious, bubbly, happy nurse. He was bright and welcoming and I thought to myself ‘You’re going to be okay.’
Remember the dry-heaving episode from my endoscopy? You would think that would happen again times ten but, no! I really was so ready. I felt calm relaxed, and in great hands. I got my epidural placed, gave hugs to my husband and my parents, and I was on my way back.
My last memory before going under was that I was able to have the same nurse anesthetist from my endoscopy and he remembered me… I remember laying in the operating room with none other than Beyonce playing over the loudspeakers. What better way to go to sleep?
Waking from my surgery was a blur. I remember part of being wheeled back into my room. I remember the voices and the ‘oh sweetie, you’re doing so great.’ I remember my family members caressing my face and feeling their relief of knowing I was okay.
I was okay. I was on the other side.
I made it through the hardest part.
The next 10 days in Maryland were full of healing mentally and physically. I still had my epidural so that made my incision practically painless.
The day after my surgery, I walked one mile in laps. That only increased from there. I was so proud of myself. I pushed my two poles around the unit thinking the more laps I did, the faster I would heal. My dad kept telling me ‘ You are so strong, I am so proud of you.’ So, I would do another lap because yes, I was strong.
In the hospital, I went through learning to start eating in a new way, not being able to bathe myself without help, and heparin shots galore.
I learned something from my dad in his treatments and every day I would make a goal for myself mentally and keep track of it.
I am still starting to remember different things from my time in the hospital, but even with the less great parts of healing, wow am I lucky.
I had the sweetest nurses who treated me like their daughter, or friend. I had the best surgeon who took every part of me into account. I had the best people in my life there to support me, and I was alive. What more could I ask for?
Every day I am still adjusting to my new normal. I eat about evry two hours in small amounts. Surprisingly, I eat everything I could eat before. I eat veggies, fruits, pizza, steak, burgers, cake, fries… and of course allll the protein I can get in any way I can get it.
My new normal isn’t normal but I love it.
I love it because I’m alive. I was told after my surgery that I had stage 1A stomach cancer. Without the discovery of this gene and the surgery, I would not have gotten this chance at life.
A lot of people don’t get to live to 22. A lot of people don’t find their cancer early. I am living for those people. For the ones who didn’t get the opportunity I have.
My new normal is a weird eating schedule, lots of yummy food, friends, fun, working towards goals, and lots o’ love.
That is more then I could ask for.
Take a second to feel your heartbeat today. Really feel it in your body. Feel your lungs fill with air. That alone is a huge blessing.
If you have a new normal, embrace it. Find the beauty in the messy. Find the things that bring you passion and that inspire others.
Make your new normal your best friend.
Stay magical!
xo, em
Made of Magic 