Hiya, Rachel here! I am a brand ambassador for Fighting Pretty and I want to talk about the fun issue of dealing with your GI tract. To be honest, I’ve had GI issues for as long as I can remember. I even had my gallbladder removed back in 2015, but my issues didn't end there.
Looking back, as a busy mom of three with a chaotic schedule, I was just trying to make it day to day. I lived off coffee and grabbed anything in reach to eat on the go. I'm sure most of you have experienced this, or are doing that now!
My GI issues would act up every few months for a couple of days, but when it started to become more consistent, I decided to get in to see a GI specialist. Because of COVID they were booking out four months, but my issues were becoming more frequent and longer-lasting with only minor breaks between episodes. I was miserable, I couldn’t eat, wasn’t sleeping, was popping Tums like candy, and drinking Pepto by the bottle. Finally, I made a trip to the Emergency Room.
The ER visit didn’t resolve any of my problems per se, but I found out I had stage 3 kidney disease. First, it was scary, but the silver lining was I was able to get in to a GI much faster which led to a full work up of tests.
After a colonoscopy and endoscopy (ew), the doctor found inflammation in the GI tract. But the bigger concern was inflammation in my esophagus caused by GERD (Gastroesophageal reflux disease) and a pre-cancerous condition known as “Barrett’s Esophagus.” Though Barrett’s Esophagus puts me at a greater risk for developing esophageal cancer (60x more likely), he reassured me it didn't mean I’d ever develop it in my lifetime! So, I went home, anxiously awaited my results and checked MyChart every hour for 7 days!
Unfortunately, it was then I found that not only did I have Barrett’s Esophagus but the cells in my esophagus had mutated so I was diagnosed with adenoncarcinoma stage 0 esophageal cancer. I was shocked. I hadn't even gone in for my esophagus. A week previously, I had been told not to even worry and the next week I am being diagnosed with cancer.
Esophageal cancer is rare, making up 1% of cancer cases diagnosed each year in the US. Being only 31 years old is even more rare as patients under 45 years old only make up 3.2% of all esophageal cancer patients.
So much happened so fast. After meeting with a bazillion more doctors and the genetics team, my health situation became even more complicated.
I had Barrett’s Esophagus, 2 genetic mutations (I'm BRCA positive and have P53), untreated and uncontrollable GERD, and doctors considering my case "chronic" meaning I'll stay on maintenance therapy for the rest of my life.
After all of this, the side effects kicked in: swallowing was difficult and awful sensations of food getting stuck in my throat. It was at this time, I really needed emotional support. This was all too much.
At my clinic, I found info on a virtual GI Support Group, but honestly felt more disconnected after the first session. That’s when I found (or should I say re-discovered?) Fighting Pretty. The mission "to help women battling cancer feel strong and beautiful" stood out to me at the perfect time! Fighting Pretty sends "Pretty Packages" to women to remind women how strong, beautiful and truly Fighting Pretty they are with signature mini boxing gloves and beauty products.
I felt like I had finally found a community of women where I could be 100% authentically me - a community that just "gets it" and most importantly I found support! After joining Instagram, following their feed and joining the Facebook private group, I have never felt more empowered with such an amazing group of women!
My little lavendar gloves have helped break the ice, share my story and advocate for esophageal cancer. They now hang proudly from my rear view mirror in my van. Every time I look at them, I realize I don't have to lose myself during this chapter of my life. I can still be fierce, beautiful, and powerful! Fighting Pretty even asked me to be a Brand Ambassador after sharing my story!
While finding my tribe and trying to keep up a new found confidence, the fight was really just beginning. I had an esophagram in December and was then diagnosed with dysphagia and esophageal motility disorder, causing food to feel stuck... apparently, my esophagus is barely working! Looking at the scan, my food stacks up in my throat so I feel pressure in my chest. And because I'm so special, esophageal motility disorder is believed to affect 1-2 people in every 100,000. I am literally 1 in 100,000! Because this is so rare, it was hard to find a specialist to help.
Luckily, I was accepted into a clinical trial that combines two drugs to keep my cells from mutating and turning into cancer! The treatment is targeted specifically to my diagnosis and we've since had great response. Additionally, I have been setup with an esophageal specialist who manages my case and has been excellent!
I am hopeful for all that is to come. I had a "pillcam" and recently underwent (one of the hardest things I've ever had to do) an Esophageal Manometry where a catheter is inserted through my nose and down my esophagus while I was awake! This helps doctors alleviate my swallowing issues. Soon, I will be undergoing brachytherapy (a high dose internal radiation to target the cancer cells. I'm still having other tests to determine if I'm a candidate for a surgery and will likely need to remove a piece of my esophagus due to Barrett's Esophagus.
It’s been a long few months… Heck it’s been a long few years. So there have been a few things that I need to share with those of you feeling like it's a downward spiral...
- "Live for today"
- this was a motto by my uncle. He passed away from COVID and after hearing this, I’ve embraced this wholeheartedly. I was someone who never splurged and always saved. Now, (within reason) I have treated myself and you should too! Buy the designer jeans you’ve had in your cart for months, get the pedicure, do something new and daring with your hair, get the damn dog you’ve wanted for 8 years! Feel good about yourself and stop worrying about what someone will think of you, I promise it’s so freeing and liberating!
- Plan that family vacation you’ve been talking about!
My family and I are ready for our first big vacation as a family of 5. It's expensive, but worth it! We are headed to Myrtle Beach for a full 6 days, 5 nights of sunshine, swimming all day and memories that will last us a lifetime!
- Be thankful.
I’ve also started a gratitude journal. Not every day is fun and blissful, but taking the time to write one good or positive thing a day really has the power to change your mindset, especially in the midst of a cancer diagnosis and treatment. Being able to go back and see even on a “bad” day the positives makes a huge difference! The day might have been filled with doctors appointments, but that stranger that paid for my coffee had no idea what I was going through and brightened my day, even if just for a minute. Too often, we live in a world that focuses on and is consumed but the negatives - I know I’ve been guilty of it! But after starting this gratitude journal and reflecting each week on all good things and positives, I don’t even remember what caused me to have a bad day.
Esophageal cancer isn’t normally caught until more advanced stages. I am beyond lucky that other symptoms led to my diagnosis. I am sharing my story in hopes it helps others get diagnosed and treated early on! I hope in the years to come we can make advances in diagnosing esophageal cancer much earlier like mine!
I also want my voice to help others find their place in a community where you feel like you belong and get the support you need like I found in Fighting Pretty! Maybe yours isn’t FP (I hope it is!) but I hope my story gives you the courage to seek out the place that gives you your voice!
Keep Fighting Pretty ladies!