I came home from work on Monday and he was in bed at 5:30 p.m. He slept through the next two days before going to the doctor to learn his only unusual symptom was a low-grade fever and slightly elevated white blood cell count. The temperature outside in Texas was over 100 degrees but he shivered in jeans, t-shirt and a fleece jacket inside the house as well on the car ride back to the doctor two days later. He continued to sleep most of the day and all night. He ate very little. He now had a temperature of 101 degrees and a pounding headache. The doctor ordered another blood test but we would not get the results until the following Monday. This was Thursday.
Friday, I was planning a trip to Kansas City to visit my daughter. My flight was early in the morning so I woke up to pack and prepare to leave when I found him downstairs in a spare bedroom curled up in a ball in bed, under several layers of blankets. He had turned the air conditioner off and the temperature in the lower level of the house was over eighty degrees. I told him I would not leave him, as he was too sick. I cancelled my flight, called my daughter and told her I was taking him to the doctor again. We ended up in the emergency room at Medical City Fort Worth Saturday morning as his condition had deteriorated and his body was aching, his temperature spiked to over 102 degrees overnight. He could barely walk into the waiting area.
The staff at the hospital quickly did an assessment and speculated that he had meningitis. They ordered a MRI and prepared to do a spinal tap. The spinal tap was cancelled after they found from the images that he had two masses in his brain, most of it laying on top of the brain but some had seeped into the ventricles. The initial diagnosis was brain cancer by the emergency room physician. They ordered more testing to determine the source of the cancer as they speculated it had metastasized from some other organ in his body like the pancreas or liver.
Several hours later into Saturday night, we learned it was not cancer but some sort of infection that initiated from the lung and traveled to his brain. The infection ate a hole in the left lung the size of a quarter. This diagnosis was made by the neurosurgeon. RM had several more procedures done over the night including a more exacting MRI to assist the surgeon. At 5 a.m. Sunday morning, the surgeon and his team met with our family as C2 and her husband traveled all night to get to the hospital in time to see RM. The neurosurgeon shared the plan for brain surgery or what is called a craniotomy that they would perform that morning. We knew it was serious when so many specialists came in on their day off to perform the procedure.
We were so elated it was not cancer but the surgeon had to firmly remind us of the severity of the surgery and the risk of the infection spreading from the brain into his blood stream. We signed the consent.
We felt positive going into the surgery as we had the chance to talk to the entire surgery team and each one assured us of the surgeon’s abilities. During the middle of the night, I quickly did an internet search to learn the surgeon earned his medical degree from the University of Virginia, did his residency at Baylor and studied at M.D. Anderson. The anesthesiologist shared with me that her husband had a brain tumor, which was successfully removed by this surgeon. She reminded us that getting through surgery was the start of our journey back to our new normal.
He came out of the surgery with two large incisions in his skull. One incision was located on the left forehead and another on his head in the back secured with staples and stitches. He looked like pictures you see of people blown up in Iraq. He spent nearly a week in intensive care when we learned after several days of lab analysis that he had inhaled a large amount of bacteria called nocardia. Nocardia lives in soil and water. We do not why RM’s body could not fight the infection off. The doctors used words like a one-off occurrence, an anomaly, or what I call – of its own kind – sui generis.
For six weeks, he took IV antibiotics that left him unable to eat. He survived on water and probiotics. We now journey with RM through therapy, oral antibiotics, doctor appointments, weird side effects, and returning to the activities we enjoy like yoga, walking and just piddling. Thank you to all of our family and friends for your support! So blessed to have RM with us. He is our sui generis.