After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Lost Records

I didn’t scream. I wanted to scream. If I had screamed, it would have been heard from the North Pole to the South Pole.

I am, however, not a screamer. Probably a good thing as if I had screamed, it would have come out as a high pitched wail, followed by a long succession of hacking due to my weak lungs.

Instead, I simply froze, not even sucking in a breath. I had just learned that all of my blood tests, records taken at my oncology office during my five years of being an active patient had been lost. Erased. Gone from their computer system.

I politely asked the person on the phone, are you sure you can’t find them? As I have some paper copies from that time, that my sainted mother had saved, I have proof they existed, but I do not have enough of them to give me the full picture I’m looking for.

You see, it all started a few weeks ago when I took one small step towards obsession in finding anything that might be helpful in light of my newly discovered working-theory diagnosis. The one element that no one can explain is why did my body flourish during chemotherapy? It has been studied from six ways to Sunday, and confounds everyone. But, as my aunt pointed out to me, I am data heavy, and pooling all of the lab work that has been done into a giant spreadsheet, might reveal some patterns or something useful. Thus, started on the project that led me to this point, of going through all of the records we had, calling and requesting any records that we didn’t.

It’s an enormous undertaking, which hit a huge bump at this moment on the phone having this lady tell me I had never had any blood drawn or ordered from their office. I politely swallowed my comment that I could have their office closed in a New York minute for allegedly administering chemotherapy to a patient without ever checking their blood levels. (If you don’t know the oncology world, that is simply NOT DONE, as you need to know how your body is surviving under the deluge of toxins.) Instead, after triple verification, I thanked her and hung up the phone.

And blinked. After an eternal moment, I exhaled. Like so many things, it seems my body’s secrets will stay secret. Or at least will be that much harder to uncover.

It’s a good thing I’m tenacious. That, and I have had many doctors, most of whom like their own test results, so I forge on. Not screaming, but chipping away until answers begin to come to light.

Life in the Illuminated Aftermath

Life in the Illuminated Aftermath