Posted by: Ken Wheatley | December 5, 2008


The first part of the week was rough for Sheila. She wasn’t sleeping or eating much , and as a result became very emotional.

Tuesday was blood tests and infusion day. When I arrived at the hospital Sheila was practically sobbing in the waiting room. I thought she might be upset because I wasn’t there when she arrived, or that she had gotten bad news from Peter, the trial manager. So I rushed to her and asked what was wrong. She was upset over the wait (she’d been waiting for 45 minutes for the blood test) and she had been trying to reach Peter since the morning and he wasn’t returning the calls.

Then there was a problem with her name change that she’d done over a month ago and they were confusing her with another “Sheila,” so we had to deal with that. And then the pharmacy took over an hour to mix the drugs for her infusion. A lot of tears were spilled that day.

Then yesterday we met with Dr. B to talk about the test results on Sheila’s thyroid. She has two or three nodules growing on the thyroid that according to Dr. B probably aren’t malignant, but they won’t be sure until they do a biopsy.

So today, Sheila tried scheduling a meeting with the endocrinologist, and they said the earliest opening was in late February. Clearly that’s too far off. So Erin, Dr. B’s nurse case manager was able to get Sheila in tomorrow morning.

We’re not sure how they biopsy the thyroid, but we’ll find out tomorrow.

Talking with Medco, our drug provider has become an almost daily occurrence. Since Tuesday we’ve talked with them at least once, and sometimes twice a day.

Lastly, we thought the infusion Sheila gets every 6 weeks was a temporary deal. But Dr. B informed us yesterday that Sheila will have to do this for the rest of her life. That doesn’t seem possible, but it’s obviously the case for the near-term.

I’m tired.

What a difference a week can make.


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