I spoke with Dr. Firoozmand, the doctor who has been working with me coordinating my care so far. He informs me that on the bone scan they found significant lesions in many areas, including my spine, my ribs, my pelvis, and my legs.
This is not presenting as a normal chordoma. They are not sure what they are dealing with and can't really give me a whole lot more information. The chordoma specialist in San Francisco has been in touch with Dr. Firoozmand and has made arrangements to have all of my scans sent to him for evaluation. Hopefully he will have more to say.
I am in a great deal of pain right now and have been taking a lot of pain meds all day with little relief. This news doesn't make me feel any better.
I know this sounds matter of fact and it is. I can't deal with the emotion of this right now. I'll try to put some words together at some point, but I can't imagine what I can really say.
1 comment:
Ben,
I hope you have gotten on top of the pain by now. You have to take the pain meds before the pain has become too strong. Choose a number from 1-10 and when the pain reaches that number (like 5 or 6) take the meds. And don't let the pain get beyond that number.
I am so sorry that you are suffering. You are in my prayers every day.
Andrea
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