Katie Sitton, 28, opens up about the surgeries she's had since childhood, and combatting stage 4 cancer. Katie was one of the winners in the BoobiButter IG Giveaway partnership I did a couple months back. She was generous enough to share her story. Here it is.
I am so grateful that you are willing to share your story with the community. Tell us about you!
I’m 28 years old, born and raised in Las Vegas. Currently, I’m living in Louisiana for treatment, but as soon as I’m stable, I’m packing my bags and going home. Three months before I was diagnosed, I graduated with my degree in history and planned on continuing my education and getting a masters degree in public history. It may sound boring to some, but history is what I do for fun. I was working at a local museum before I left Las Vegas. I actually worked with Mark Hall Patten from Pawn Stars. He was a fun boss to work for. I love hanging out with my friends. You’d think living in Vegas, the strip and clubs were where everyone went to hang out, but when you live their all your life, you avoid it. I was happy just going to the movies and grabbing some In n Out. That was fun for me.
Tell us about your cancer journey. When did it begin?
I guess my story starts when I was born. I was born with neurofibromatosis, or NF. NF is the most common neurological genetic condition that affects 1 in every 3000 births. It is more common than cystic fibrosis, hereditary muscular dystrophy, Huntington's disease and Tay Sachs combined, and yet it’s still a complete mystery to the medical field. NF causes (mostly) benign tumors to grow along the nerves. By the time I was 10, I had already had 6 surgeries, one of which was to remove a tumor from my spinal cord, leaving me with two fancy rods in my back. Although most tumors are benign, people with NF have a higher risk for developing cancer in their life time. When I was 27, I noticed a lump on my breast, that was different than my NF lumps. After calling probably 15 breast doctors, and getting turned away by each one because I was “too young," I was finally able to get into Planned Parenthood; even then, this doctor dismissed it as my condition.
But I know my body, and I knew this was something else. Five months later, I ended up in the ER, as I was not able to breathe. After emergency surgery to remove 2+ liters of fluid from around my heart and 2 weeks in ICU, I was diagnosed with stage 4 metastatic breast cancer. It didn’t really sink in at first; I wasn’t even sure what metastatic meant. I’m still here, 7 months after being diagnosed, kicking cancers' ass. I’ve learned a lot these past 7 months. Not to take things too serious, and to get rid of all the things in life that make you unhappy and just live your life. Something I tell myself “I have cancer. Cancer does not have me.” So far in my treatment, I have only had chemo. 15 rounds so far. I should be almost done, and I’m getting a mastectomy by the end of the year.
I cannot even imagine. Do you recall the moment you were diagnosed?
Yes. I ended up in the ER. My heart rate was 140 and I was having shortness of breath -- thankfully, I was wearing my Fitbit, which alerted me of this! As soon as I was admitted to the ER, I had a CT; less than 30 minutes later, I was having emergency surgery to remove fluid from around my heart. After I woke up, I was told they removed 3 liters and I still had a drain in my chest.
I was told they took the fluid off for testing. After a week of still being in ICU, my doctor came in and told me I could go home. I was a bit confused and asked him “what about my test results?” He said he forgot. He forgot! 30 minutes later, he came in my room and told me, “sorry. I can’t send you home today. You have cancer.” I was honestly just....confused, I didn’t really believe him. I asked him if he knew where it was, and he said probably the colon. I asked him: “why?" I wasn’t having any symptoms that I knew of that would make me think colon. He simply replied “it’s just a common place for cancer”. I decided to lift up my shirt and just show him the giant lump on my breast that I have been trying to get looked at for months. His reply: “oh, you’re right. It’s probably breast cancer”. Needless to say, my experience wasn’t the best; but I don’t think there is ever a good way to find out you have cancer. The next day, I had a biopsy and a week later, still in the hospital, my pulmonologist came in my room and told
me it was positive. He was kind and supportive, and made me feel a lot better. He told me to be an advocate for myself, and if I don’t like a doctor, then to find a new one. He was compassionate, as his wife had breast cancer, and he really eased my worries.
That first doctor...what the heck! I'm so glad the second one was more compassionate. But that must have been really difficult. How are things going now? Currently, I’m on disability while I’m going through treatment -- but once I’m done, I plan on getting right back to work. What inspired me to work in museums? I’ve always had a passion for history. I was reading biographies on presidents when everyone else was reading Goosebumps. I do plan on continuing cancer advocacy when I go back to work. How I’ll combine the two? I’m not sure just yet. Maybe host events or days where donating to help research, such as Metavivor or BCRF will get them free admission.
What is the most challenging aspect of combating cancer? I think the change. Everything changes when you have cancer. While undergoing treatment, you can’t do the things you used to do. My days no longer consist of gym, work, hanging out with friends. I’m lucky if I have enough energy to walk around the grocery store. It’s hard to accept that this is the new normal, but at some point, you just get used to it.
What has been the most rewarding aspect of your journey? You learn to relax. Not to take life so seriously. You learn to take risks, be brave. Do things you wouldn’t normally do. Go on adventures. Not to waste your time on things that don’t matter. To get rid of the negativity in your life. Be happy. Enjoy the little things and to take take anything for granted.
What is one piece of advice you would give others your age who have just been diagnosed? I know it probably feels like the end of the world, and you might even feel like giving up. But don’t! There are so many people out there who are going through the exact same thing as you right now. You can get through this. And there’s always someone out there to talk to. Also, be your own advocate. If you don’t like your doctor, find a new one. Get a second opinion, a third even.
Is there a date, holiday or time of year that you find challenging?
Actually, no. Maybe when my one year anniversary of diagnosis comes up, I might feel a certain way. But so far, I’ve haven’t had a bad day. I’m enjoying the holidays and living each day the best way I can!
Is there a book or podcast that would you recommend to others? Perhaps related to illness? The podcast I like right now is “Stuff You Should Know”. Each episode is random history about things you probably didn’t know about. The last one I listened to was about the real Amityville horror house. I listen to an episode every Tuesday when I drive an hour to chemo. When it comes to cancer though, I haven’t really read anything. What has helped me, honestly, is finding others my age who are going through the same thing. I found a lot of helpful women on Instagram, who I’ve been following since I was diagnosed. @mycancerchic and @brittneybeadle where the first people I found. They made me see that I’m not too young for this. There are so many girls and guys out there, my age, going through the same thing. There are tons of blogs I follow.
What keeps you inspired? I just remind myself that this is just a bump in the road and I’ll get through this. Just stay positive, laugh, smile, and remember “you got this”. My friends inspire me to stay strong everyday. My best friends, Angie, Savanna and Cristina have been by my side since the day I was diagnosed. These women also have NF, and show me how strong they are everyday.
Thank you, Katie. You are an inspiration to all of us. <3
You can connect with Katie on Instagram @KatieMSitton