Living My Best Life: A Family Beach Vacation After a Brain Tumor

Julie is an ovarian cancer survivor who was diagnosed in January 2013. Catch up on Julie’s blogs here!

This year started last year in July. I did write a piece about the year, and clearly, it has been a very long year. Last months of June and July, I started to have balancing issues. My husband had to hold my hand for just so I would be able to walk properly on the street sidewalk. I also fell several times off my bike. One fall was down a ravine into some mucky, earthy dirt.

After coming home from our vacation at the beach, an MRI was ordered by my oncologist, and I was diagnosed with a small brain tumor. At least we had answers. I was able to receive Gamma Knife surgery — type of radiation therapy that uses focused beams of gamma rays to treat tumors or other abnormalities in the brain without an incision — at the Cleveland Clinic with the most experienced doctors and staff. After a regimen of steroids, I was much better.

In the process of getting well, I also noticed a rash on my arm. It probably started from the fall in the mucky earth ravine. By September, my balance issues seemed resolved, but the rash became worse. By October, I was experiencing open lesions that were incredibly painful. These lesions were only on my arms and legs. I went to my dermatologist who took biopsies on two different occasions; however, she was not able to come up with any diagnosis.

I was referred to a specialist at the Cleveland Clinic. He took more biopsies and then had referred me to an infectious disease doctor. The sores were getting larger, some the size of a $.50 piece! By January, the diagnosis was made that I had an environmentally micro bacterial infection (chelonae: a type of infection caused by mycobacterium chelonae, a rapidly growing environmental mycobacterium found in soil and water) that is common and anyone can get. Because my own immune system is compromised, I was not able to fight it.

By February, cultures were grown, and antibiotics were tested to fight the infection. On February 18 I started a regimen of two IV antibiotics and one oral antibiotic that I had to give myself every day, twice a day. I felt like I was my own nurse. After 44 days of IV’s, I was able to switch to three oral antibiotics. Slowly, the sores started to heal. The protocol was a four-to-six-month regimen. I am getting better but have terrible marks on my arms and legs. Hopefully, they will fade.

In March, the balance issues returned. After three MRI’s the neurologist determined that my tumor is dying, and the balance problems are related to necrotic tissue being angry. This was good news.

We are again at the beach this week. We have 22 family members celebrating birthdays, a graduation, me getting better, and living our best life. Families came from Idaho, Ohio, and North Carolina to our beach at Emerald Isle in North Carolina. We are ocean front and our view is spectacular. This year, this fabulous family of mine are celebrating and living our best life. My husband and I are with all our adult children and our ten grandchildren. We are not promised tomorrow but we are celebrating the best vacation ever!

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