What the Neurologist had to say

Posted mid-2009

A little over a month ago I began having more trouble breathing, my fatigue worsened, and I developed what my doctors describe as partial paralysis on the right side of my body. It feels almost like I’ve had a small stroke. The doctors were convinced it was advanced brain cancer, but the MRI showed nothing. Today I met with the neurologists.

I’ve spent the day trying to process what they told me. Frankly, I’m not pleased—though I do think they’re doing their best. The MRI is clear, and my tonsil isn’t the cause. What is? They still don’t know. But they’re almost certain it’s a form of Paraneoplastic Syndrome—an autoimmune disorder triggered by the presence of cancer in the body. It’s extremely rare in thyroid cancer, and there’s no standard treatment.

We’re currently considering three possible treatments: intravenous Prednisone, IV Gammaglobulin, or Plasmapheresis (where antibodies are filtered from the blood). Before any of these can begin—each being very expensive and risky—we have to get insurance approval. In the meantime, they’re ordering more tests.

Over the next month I’ll undergo several blood tests, a spinal tap, a PET scan (with two injections of artificial thyroid-stimulating hormone—each $1,100), and a CT scan.

After my vacation at the end of June, I should have a clearer picture of what comes next. Right now, the most important thing is getting rid of the cancer. If that can be done, the Paraneoplastic Syndrome might resolve on its own—hopefully. But since the cancer is widespread, we may only be able to control it, so we also need a strategy to manage the Syndrome itself.

This was more or less what I expected to hear. What I didn’t expect was the doctor telling me to prepare for the worst. They’re having someone from the hospital help set up disability paperwork in case I need it. They’ve also recommended that I find someone to live with me who can help if my condition worsens. Since my wife passed away, I’ve been living alone. The doctor also approved a handicapped placard for my car.

Honestly, I have no idea how to find a roommate, and I’m not ready for that—yet. For now, I keep my cell phone with me everywhere in the house, and I wear my car remote and garage remote around my neck so I can trigger an alarm if I’m injured and can’t reach the phone. I also post daily on Facebook so friends and family know I’m still up and moving.

After the neurologist, I met with a physical therapist—they’ll start therapy with me soon. For now, I’m taking this one day at a time.

Thank you for your continued support.

Odell

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