How this all started

The fall of 2018. Thats the first time I noticed the lump in my jawline. The 9 months leading up to that are a blur. A swirl of sleepless nights, breastfeeding, homework, playing outside and finishing and unpacking our new house. A storm of postpartum depression, anxiety, fatigue, alcohol and a marriage that just wasn’t working. I was in my mid thirties, had just had my fourth child and life was beautiful—except for the parts that weren’t. Then one day I found the lump. I can recall feeling it, over and over, running my fingers over it. Wondering. Lumps weren’t anything new, I have three currently in my breast, all benign. But this one was different, it was larger and in a different location. I went to the doctor and they dismissed it as a cyst. Nothing to worry about if it wasn’t causing any problems. Don’t worry—how could I not? It was in my face, an ever present reminder that something wasn’t quite right.

Next, came the ear infections, I had several. Once again, I went to the doctor. I hadn’t had an ear infection since childhood and these were reoccurring. This time they decided perhaps it was swollen lymph nodes and not a cyst. The doctor referred me to an ENT who agreed that it was most likely swollen lymph nodes and would go away with my ear infections.

Time marched on, as it does, and things adjusted to a new normal. My husband and I divorced, I quit drinking, I met my future wife Sarah and my bonus daughter, Ada. My health also adjusted to a new normal. I now had a frequent earaches and I was convinced the thing in my jawline was growing. Sarah’s mom works as an oncologist for the CDC. She believes everything should be looked at by a doctor! So in the Spring of 2020, Sarah and I found a new doctor. Finally, someone took interest in the thing growing in my jawline! After further testing we were strongly encouraged to have the lump removed.

In the Fall of 2020, one day after my twins turned five, I had surgery to remove the tumor in my jawline. The surgery was a success, the surgeon was able to remove all of the tumor. It was a difficult surgery however, as the tumor was much larger and deeper than images had predicted. He said healing and recovery would take a little while longer. We praised God that it was benign, but something wasn’t quite right. Less than a week after surgery, I was called back in for an ultrasound and needle biopsy of several nodes on my thyroid. Biopsy results were benign and I was sent home to rest and heal. I was told to follow up in one year for my thyroid.

Fast forward a few months, to the Spring of 2021. I still have this deep, blinding pain in my left ear that has never gone away. The left side of my face remains painful and numb in some places. I have lost partial hearing in that ear, vibrations, pitches, pressure- it all affects me. It’s around this time that I started having headaches. I don’t give them any attention but I do slow down, my energy is starting to run down for the no apparent reason.

It’s now the Fall of 2021 and I have a hard time getting out of bed. I’m not steady on my feet anymore. My headaches are blinding and relentless. I started sleeping 18-20 hours a day. I am moody, exhausted. Light and sound, smells, they all bother me now. I don’t know what the future holds but Sarah and I are tackling it hand in hand. We both left the kids back in Georgia with my parents and my ex husband and came up to the Mayo Clinic in Rochester, MN to get answers.