You, My Dear, Are A Baffling Curiosity

“You, my dear, are a baffling curiosity.”

I have worked with a lot of doctors over the last year, but my favorite is a sweet older gentleman who has been practicing medicine for over 50 years and happens to be a good friend of my father-in-law. He treats me like a daughter, explaining that just because he and the medical community haven’t seen anything like it before, it doesn’t mean that it’s not real.

“You look healthy. I know you don’t feel good, but you look much better than your labs and imaging would suggest.”

My coccidioidomycosis titers have remained steady at 1:32 for the last year, despite aggressive treatment. Somewhere between May 2014 and March of 2018, the infection escalated from 1:4 up to 1:64 (meaning antibodies still remain after the sample has been halved 64 times). Despite this, everyone is now in agreement: whatever this thing is, it’s no longer valley fever.

My morning cortisol is low at 3.8 L, where the normal range is 6.0-18.4 L. Paired with several other abnormally low hormone and enzyme levels, my labs are pointing to adrenal insufficiency and/or liver damage and/or kidney infection and/or malnutrition. I’m awaiting results from gastrointestinal and micro-nutrient tests, so hopefully those will point to any malabsorption issues. I’m also trying to see an endocrinology to verify the hormonal imbalances.

My PET scan shows soft tissue masses speckled down my legs, and clusters of radioactive sugar-suckers from my knees down to the tips of my toes. I’ve been told repeatedly that “valley fever doesn’t behave like this,” and yet the SUV is too low to represent malignancy. We’re planning to repeat the PET scan to monitor any changes and verify biopsy locations.

“You have two options here:
1. You can be aggressive and keep pushing forward until you find an answer, or
2. You can accept it, and do you best to live a normal life.”

I’m working with several doctors who are leaders in their field, thanks to some invaluable family connections. Every single one is utterly perplexed. The objective labs and imaging don’t make sense, nor do my subjective symptoms.

It’s as if someone haphazardly tossed some nouns and adjectives into the Mad Lib of my life. A tumored toe here and malfunctioning adrenal there. The next thing you know, I’m going to wake up with webbed feet and a blue nose.

“Your condition, it’s…nebulous. Now, what do you make of that?”

As frustrating as medical diagnostic process can be, I am so grateful for the doctors that actually care–the men and women who call on Saturday afternoon with test results or to ask how I’m feeling. Having seen equal amounts callousness and compassion across the past several years, I appreciate the latter that much more.

As I step back and try to discern what life is trying to teach me here, I keep returning to the power of empathy. In the midst of all this uncertainty, I’ve never gone a day without hugs, words of encouragement and small glimpses of hope. Right now, I’m 100% focused on myself and my recovery–I need to be–but as soon as I regain some energy, I intend to seize every opportunity to give back, show love and do more than expected. So many people have done that for me, and I’m confident that I’m in a better place because of it. If you’re one of those people, thank you–truly, sincerely and from the depths of my heart, thank you.