My Story

January 24, 2022 was a normal day. I spoke with my marketing manager in the morning, researched products for my boutique, tended to daily tasks, had a training session at the gym, and wrapped up my day with a massage. It was a good day until I returned that evening from my massage and walked into the house. I heard my husband, Neal, on the phone in the distance. He had a serious demeanour as he walked toward me. He told the person on the phone, “hang on, Kim just walked in the door.” Neal told me it was the urolgoist then touched the speaker phone.

Two weeks prior to this, I had gone to see him to figure out why I was having recurring UTIs and feelings of urgency. These symptoms had been going on for several months, and I knew it was likely due to menopause. During the office visit, he scoped my bladder and saw alot of inflammation. He felt that it would be best to take me to surgery so he could get a better look and scrape my bladder along the inflammed area. To my surprise, he found a 3-4 cm tumor which he removed and sent to pathology.

It’s now five days since the procedure and the phone call from the urologist came to share the results. He shared the pathology report showed the tumor was cancerous and had invaded the muscle wall. Because of this, I was diagnosed with stage 2 bladder cancer. This diagnosis came as quite a surprise since I have no family history of cancer or any risk factors. Up to this point, I led a healthy lifestyle by taking supplements, working out and for the last few years primarily eating a plant-based diet.

Chemo treatments began in February in which I suffered several side effects, which my oncologist hadn’t seen in his several years of practice. One of the side effects was elevated liver enzymes. These were so high in April that oncology referred me to a GI specialist for evaluation. Several lab tests were run which resulted in a diagnosis of rhabdomyolysis. Rhabdomyolysis is a condition in which damaged skeletal muscles break down rapidly. My symptoms included muscle weakness, tea-colored urine, and high blood pressure. Since this diagnosis can be harmful to the kidneys and may lead to kidney failure, I was admitted to the hospital in Wichita on Memorial Day weekend and started IV fluids. 

Upon admission, my CPK levels were over 39,000, (the normal range is 100-200) and I stayed in the hospital for eight days. Hoping things would turn around while recovering at home, my CPK numbers weren’t dropping below 20,000. I was becoming weaker and weaker. By the end of June, my husband became my caregiver while still working full-time. He assisted me in and out of bed, bathing, and sometimes helping me eat. After ten days at home and now unable to walk, we drove from Wichita to the Kansas University (KU) Medical Center ER (three hours away) so I could be admitted. After being seen by oncology, neurology, internal medicine, having multiple tests and a muscle biopsy, it was determined I have Dermatomyositis, an autoimmune disease. 

The treatment plan began with high-dose steroids, IVIG, and other medications to help fight this autoimmune disease. Since my muscles were so weak due to the breakdown, I could only lie on my back or sit in a chair. I was unable to feed myself, lift a glass to drink, bathe, brush my teeth, and had a hard time swallowing. I needed two people to assist me in and out of bed or the chair. Someone always needed to support my head to lie down or sit up. 

After two weeks of treatment, I began walking with assistance. I would push myself to walk further each time and saw progress. Within three weeks I was able to feed myself and pick up beverages to drink. By week four the medical team agreed I was ready for rehab. 

The day I was scheduled to transition to KU Rehab, I tested positive for Covid 19! I was kept in isolation and unable to move to KU’s Rehab facility. Fortunately, I learned of a facility close by that would take me. After two days of making phone calls and tending to necessary paperwork, I was released. 

Off I went to rehab only to be put into isolation and unable to access the main gym where I was anticipating to gain more strength. I saw the therapists in my room where we did modified exercises and did what we could. I had no access to the outside world and was forced to stay in my room with the solid wood door closed. Fortunately, I had a large picture window with a large tree and a view of a courtyard.

Nine days passed, I had met my goals, and the medical team felt confident I was ready to go home! My husband drove from Wichita on a Thursday afternoon and we drove back to Wichita late Friday morning. It was an emotional experience knowing I was transitioning home where I would become more independent. I was excited to reunite with my two daughters, our labrador retriever, and fluffy feline whom I hadn't been with for eight weeks. 

We had a smooth ride home and our labrador was the first to greet me in the garage. He was so excited! It had been two months since we’d been together. My husband assisted me out of the car and into my wheelchair. As he pushed me into our home, I felt overwhelmed. I began crying with tears of joy and pinching myself to make sure this was real. It felt similar to culture shock since I had been gone most of the summer. Praise Jesus I was home to stay!