“And here you are living, despite it all.”

One of the first rules I remember learning as a kid was, “You can’t tell anyone your birthday wish after you blow out your candles or they won’t come true.” In my now 25 years of life I can confidently say that that is one rule I’ve never broken. But I’m going to break it now.

My reason for breaking this rule is that I’m unsure if my wishes have come true or not. For the last 6 birthday candle blow-outs, (literally or figuratively), I’ve wished for good health. The first memory I have of something being wrong started when I was 19. I was a sophomore in college, loving life and playing lots of golf. The pain wasn’t consistent, it came maybe once every 8-10 months. Over the course of 6 years, that once every 8-10 months turned into once every 10 days. I was scared, I was hurting, I was trying to live normally knowing something very abnormal was happening in my body every day.

I think if I asked my friends to describe me they would say I’m the positive one. I can turn any negative situation into something not-so-bad. I can turn a storm into a pretty sunset. But my own storm hasn’t seen a pretty sunset for 6 years. When it comes to me, I have a hard time being positive and following the advice I give those closest to me. For 6 years I’ve been chasing a dark cloud that is my health. I’ve been gaslit out of doctors offices as, “Oh this poor little white girl has tummy pain. Must be IBS. Good luck!” I’ve done stool samples, I’ve done blood work every 6 weeks for 6 years, I’ve been in and out of urgent cares, I’ve almost spent $80,000 on a treatment program in Arizona to figure out what is wrong with me because I know the pain I feel can’t “just” be IBS. 

It’s hard to stay positive when all of my blood work consistently comes back as “enviously healthy.” It’s hard to stay positive when all of the urgent care visits end in, “Well we don’t see anything wrong with you, you can go.” It’s hard to be positive when doctors look you in the eyes while holding your charts and say, “You look great, your labs are great, you’re active, you’re healthy. How are you managing your anxiety?” I know the pain and I feel it. I know to trust my body but how can I when nothing is wrong but I hurt? It deterred me from pursuing answers. It made me fearful to speak up for myself. If these doctors keep telling me nothing is wrong, they must be right. Maybe it’s just my brain doing this to my body. I guess I’m managing my anxiety terribly if this is how I feel all the time. This has taken away so many moments with family and friends where I’ve had to hide behind excuses because, like the doctors kept saying, “Nothing looks wrong with you,” but I’m hurting and scared and constantly wondering when is it going to happen again? Elephant in the room: this has derailed my career. I don’t play professional golf anymore, it was too painful. I can’t even play golf recreationally out of fear of pain. I can’t help but wonder how my life would be different if I had a “normal” body.

After one final push from my parents, I reluctantly went to another doctor with a small positive voice in the back of my head, “Maybe this will be different.” Immediately, she scheduled a colonoscopy and endoscopy on April 10th, and a CT scan of my abdomen and pelvis on April 12th. After the glowing results of healthy insides from April 10th, I was notified of something not glowing from my scan on April 12th. On April 14th I was called back into the doctor's office with news of a 13cmx15cm mass on the left side of my liver with a smaller piece on my right side. It was an immediate weird flood of emotions. Of course the first was the worst, the terror of it being the “c” word. But the second was a sense of relief. Finally. All this time I had known something was wrong, but all this time I was dismissed as a healthy-presenting young white girl. With this new diagnosis being out of the realm for this particular doctor, I packed up my 6 month home in Naples and was referred to the Mayo Clinic’s liver department on April 24th. After some more imaging and scans and blood work, both of the masses were deemed an adenoma, a benign tumor. I was scheduled for surgery on May 8th. The next wave of emotions: crying happy and scared tears in the surgeon's office. It’s not cancer, it will come out, and maybe it will improve my pain.

The mass was pushing and moving all sorts of insides around where they shouldn’t be. I mean how could it not? It’s a 5inch x 6inch obstruction in my body. My doctor even said it’s incredible you couldn’t see it through my skin just by looking at me. Have you ever thought about how it feels when your stomach growls when you’re hungry? My last memory of my body doing that is 4 years ago. Have you ever felt post-Thanksgiving dinner full after just drinking water? I do. It was affecting everything from the clothes I wore to how I eat food to how I got out of bed in the morning.

I am now 16 days post-surgery and 1 day post turning 25. The surgery was successful and I’m now living with a fraction of a liver, no gallbladder, a wicked scar from my diaphragm to an inch below my belly button, and what people keep saying is, “A new lease on life.” I don’t know if I believe that yet, being positive after all of this is still confusing. I’m working on being less angry at the doctors who have dismissed me so many times and thankful for the ones who took this so seriously. I’m beyond grateful it wasn’t the “c” word while still scared knowing there was this alien inside me doing its worst for god knows how long. I’m looking forward to hopefully living how I want to. No more last minute canceled plans due to fear and/or pain. No more waking up every morning terrified for what’s to come. No more turning down things or shying away from things out of fear of how I’ll be feeling. No more excuses to family and friends. Of course none of this is promised with the tumor removal, (as my surgeon reminded me), but the small positive voice in the back of my head tells me maybe this will be it. Maybe this is the answer I’ve been longing for.

So in a way, my birthday wishes have and haven’t come true. I’m as healthy as I could be with a tumor inside of me, but I had a tumor inside of me. I’m beyond thankful for the health I do have. I’m beyond thankful for my parents for pushing me to pursue my health and for believing me when others didn’t. I’m so full of love for my friends and their support during my diagnosis and recovery. I’m proud of myself for getting through all of my hardest days. Behind so many photos and so many happy memories over the last 6 years has been a girl putting on her bravest face to show up for her own life. And she’s really happy to be here, despite it all.

Hug your family, tell a nurse and a doctor thank you, and don’t forget to advocate for your health. As for this year’s birthday wish, I haven’t made one yet. I’m just happy to be here.

HB