March On! My Journey Through Lyme Disease and Breast Cancer
By Caroline | @chronicallycaro___ | April 1, 2019
Hello, friends! My name is Caroline! I am 32 years old and I live in Minnesota. I work as a nurse, though my journey with healthcare started much earlier.
Here is my story:
Six years ago I got a bullseye rash. Right on the butt of all places. I didn’t think much of it, but enough of my friends saw it and said I needed to get checked for Lyme disease. I didn’t have health insurance at the time, so I was wary to do so. Finally, I saw a provider who told me it might be Lyme, but to come back if I get the initial flu-like symptoms. I never got the symptoms and eventually the rash went away, so I did not think much of it.
Fast-forward about nine months and I was sitting at my friend’s house watching tv when a crazy wave of vertigo came over me. I laughed at first and told my friend I felt like I was car sick without being in a car. Little did I know that moment was the beginning of a health journey that has changed my life.
The vertigo led to more frequent episodes of vertigo and dizziness. If I stood for more than an hour I would start to get dizzy, weak, and faint. I’d have to sit down to stay conscious. The longer I’d stand the harder it would be and my vision would start to disappear. Eventually I started developing numbness in my hands, feet, and half of my face. One day the vision in my right eye got really blurry. Along with the neurological symptoms came debilitating fatigue. It was hard to stand, let alone sit up straight. I saw over fifteen doctors and none of them had a good answer for what was going on. I looked healthy on the outside, but felt horrible on the inside. I tried desperately to explain to the people in my life how badly I was feeling, but try as they might, most people did not understand. I got several comments along the lines of “maybe you’re just stressed” and “maybe you just need more sleep,” but I knew it was more than that.
I suddenly remembered getting the bulls-eye rash several months prior and started researching Lyme disease. The more I researched the more I realized I had a lot of the symptoms of late-stage neurological Lyme disease. I asked several doctors if they thought that was what I had, but most said no. I got tested for Lyme and tested negative. It wasn’t until later I learned that the primary test for Lyme disease is only 50-60% accurate.
I felt so invalidated. Enough doctors and people in my life minimized how I was feeling and soon I started to question if any of it was real. Was I going crazy? Was this what it was like to lose my mind? Was I making this up? Somehow manifesting this in my body? Was all of this my fault? Did I just need to suck it up? Finally, I got an answer from a naturopathic doctor who said I was a textbook case of late stage Lyme disease. She referred me to a doctor who specialized in Lyme and I was finally able to start getting treatment.
My journey with Lyme disease has been the most challenging journey in my life. I still get awful fatigue, weird neurological symptoms, dizzy, faint, and the vision in my right eye never came back. I have had a lot of grief from Lyme. I used to run at least five miles a day, and I stopped even being able to work for several months. My athleticism as I knew it has never returned. I sometimes forget what it is like to have energy like I used to.
I struggled mentally. I wanted people to understand. How could I get them to see my pain when it was so invisible? Eventually I learned that it is not about getting others to understand. It is about creating a space for myself where my own validation is what I need. The truth is, people struggle to understand chronic and invisible illness when they have not been there. They do not know what it is like to try to function in a world that waits for no one. To put on a smile, positive attitude, and brave face day after day.
Chronic illness can be relentless. I think I could sustain it forever if I could get one day off per week without fatigue, but that is not an option. Life is not fair. Which brings me to what happened next.
A little over a year ago I was taking a shower and I felt a lump in my breast. I dismissed it and concluded it was nothing, but again, I was convinced by my friends to get it checked out. I want to my obgyn and I could see the concern in her face when she felt the lump. She scheduled me for a mammogram and ultrasound for the next day and that next day everything changed.
The mammogram and ultrasound were suspicious. I could tell the radiologist was concerned and I asked him if he thought I had cancer. He said, “I cannot say for certain, but it does look suspicious.” A bit later in the ultrasound I said, “Please be honest with me. I know you don’t know for sure, but in your experience could this be anything other than cancer.” He responded, “Honestly, in my experience, no.” I stayed for a biopsy and found out the next day that I had grade 3 invasive ductal carcinoma—a kind of breast cancer.
To say I was shocked was an understatement. After having dealt with Lyme for so long I naively thought I already had my “health issue.” I thought I suffered enough, but again, life is not fair. I felt like I won the anti-lottery of health. I exercised, ate fairly well, how did this happen to me? I had no family history of breast cancer or any related cancer, yet here I was with an aggressive form of Stage IIA breast cancer.
After the shock of the initial diagnosis came a treatment plan. I had a single-side mastectomy followed by 16 rounds of chemotherapy. I finished my last semester of nursing school while recovering from surgery and going through chemo. People were shocked that I was able to do that, but here’s the thing: if I can make it through Lyme, I can make it through chemo. Chemo sucked, but it didn’t hold a candle to my worst days with Lyme.
If chronic illness has taught me anything, it’s endurance and self-validation. It’s also an exercise in hope. I’ve found that the mere belief that tomorrow will be better is enough to carry me to tomorrow. I’ve had my dark days and my moments where I have questioned if all of this is worth it, but let me tell you, friends, it is. It is worth every nitty, gritty barely-hanging-on moment.
I have learned so much from this and I have become so strong. I have learned a depth of my strength I otherwise may never have known. I have become toughened yet more empathetic and I am without a doubt a better nurse because of these experiences.
I have not and I will not let cancer or Lyme or anything change my belief that life is good and God is good. That there are things to be grateful for and there is beauty all around me. I will not give any disease the satisfaction of changing my belief in good.
But I’m also never going to pretend these last six years have been puppies and rainbows. In a world where people often say “stay positive,” I have made it my mission to stay real. Being 100% positive 100% of the time is invalidating. My pain is real and it deserves to be recognized. I am positive most of the time, grateful nearly all of the time, and hopeful all of the time, but sometimes it sucks and it is okay to embrace that. To sugarcoat my experience into one of pure positivity and growth is to commit an injustice to the strength and endurance it has taken to get through the last six years. I will not do that. I will speak my truth for myself and for anyone out there that needs to hear it too.
Stay strong, my chronic illness warriors. Even on your worst day where the minutes seem to drag on, you’re still a bad ass.
Caroline is a breast cancer survivor and Lyme disease warrior who lives in Minnesota with her sister and her two kittens. She loves being a nurse, writing, crochet, and nature. She tries to keep her focus on hope, gratitude, growth, and humor.
Instagram: @iamcaro____ & @chronicallycaro___