October 3, 2019
Diagnosis: arachnoiditis/leptomeningitis. Can you say that 3 times fast? This is the diagnosis of dad's infection in the spine. Here's an anatomy lesson of the central nervous system. Imagine a peanut-covered M&M. The peanut represents the brain and spinal cord. The thin translucent film over the peanut is the "pia mater." The chocolate is the "arachnoid mater" and the hard candy shell is the "dura mater." These layers are surrounded by spinal fluid and protected by the spinal canal. Dad's infection was within the "chocolate" and "translucent" layers of his central nervous system. The doctors are unsure of the etiology(cause) of the infection and have considered a superficial skin wound that got infected, but also considered the urine or lungs as a possible source.
I had the privilege of reading dad's medical records this evening and I was shocked to see that for 6 days at UNM, the leading diagnosis was malignancy (cancer) based on the findings of his MRI that was done upon arrival. It was not until Dr. Allen examined my dad that she was honest and forthcoming about this possibility, whereas the doctor from the night before only reluctantly mentioned cancer when my dad pushed him for his "gut" feeling about the cause of his symptoms. And in those 6 days prior, we were left to wonder if it was musculoskeletal vs infectious (my leading diagnosis due to his fever, neck pain and back pain, since he was in Taos). As I poured through each progress note and consult note, I could see the uncertainty in their thought process as other diagnoses were being considered including malignancy, but also mentioned was discitis, pneumonia (though there was never any clear radiographic evidence for this) and other serious infections including tuberculosis. Dad's clinical presentation had the doctors stumped (thanks for not reading the textbook, dad!), and it was only with time and some serious detective work initiated by Dr. Allen did that picture start to come more into focus. The internal medicine team was astute to change dad's antibiotics he got in Taos to a regimen that was more in line with meningitis while Dr. Allen guided the lab and fluid testing to optimize the antibiotic regimen, with helpful input from Neurology and Neurosurgery.
As I reflect on this past two weeks, I feel like I have traveled around the world twice. The emotional and physical toll it has had on my dad is hardly noticeable as you see in the photo below. When I told him the medical diagnosis, he responded with "It's tough being a man baby," and he leaned back with a swagger and raised his arms to the side. Really dad? The patients here are going to think you're just here for the free food! Today he has looked his best, and most like his old self. He painted my mom's nails (a favorite activity) and even tried to do the "floss" (it was EPIC). He likes to joke about picking up his walker when he walks in the halls and only puts it down when he is walking across a nurse or doctor (seriously dad, you're going to get kicked out of here!). We enjoyed another meal from El Patio in Albuquerque, and as mom says, "it is the closest to a home cooked meal."
Dad continues to make friends in rehab as when he was at the hospital. The nutrition aide calls dad "hito" but I think she is younger than him. His night aide is from Cuba, is Navajo, and has a zest for her job with sincerity emanating from her personality and empathy for her patients. His nurse Jessica recently moved from Michigan and she is looking forward to the milder NM winters. His roommate is healing from a brain bleed, and in his younger years was a successful trial lawyer who once had Donald Rumsfeld as a plaintiff witness for a client he represented in a worker's compensation case. He won the case, needless to say. He also went to grade school with Vice President Joe Biden, and you can guess who he is voting for in 2020. I shared a lovely time with him and his wife, visiting about the Iowa caucuses and the freak show that is our current political system. We debated the pluses and minuses of each of the candidates and they are active consumers of the political news landscape, with a keen eye on the upcoming election. Dad makes every person feel like they are the only ones in the room, giving them respect and sharing much about himself as well. As his roommate's wife left for the night, she thanked me for the nice conversation and she is grateful to have met dad, that in the short time they have known one another, she knows we come from a special family.
I will be traveling back to Iowa tomorrow to be with Zeferino, Joaquin and Elias. Wow, I have missed them so much. But I also have thrived here in NM. I have been sustained by the green and red chile, the sopaipillas, the crisp Fall air and the love, care and friendliness of those around us during this time. Being with my nuclear NM family has strengthened me in ways that will carry through as I travel across time zones and state lines. I know I am blessed to have a wonderful and funny and loving father, mother, brother and sisters, and the love expressed from all of you during this journey has kept my cup overflowing. I will return to Iowa with a renewed sense of purpose and energy, not that it was ever lost or depleted, but something about being home allows my batteries to recharge both emotionally and spiritually. I am so proud to be able to advocate for my dad and other loved ones in my capacity as a physician, but I am as equally proud to come from a family that taught me how to be the person I am today.
Thank you for reading, for walking this path with us and for keeping my dad and our family in your thoughts and prayers. For this, we are grateful.
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