Sneak Preview

When I went to Patient's Day earlier this month, I was able to speak with a number of staff who took care of me during my treatment(s). I spoke with my amyloid doctor, who complimented me on my healthy appearance, and wanted me to do a favor for her: to come in and do an early 24-hour urine test. She was genuinely curious to get the first results from my treatment, and didn't want to wait until my 3-month evaluation in mid-December.

To hear that my doctor was as curious as I about my recovery such a nice feeling. What a heart-warmer. And having the advantage of living in the area, I was able to do it without a problem. I drove down and dropped off my "little orange jug" on November 14th.

The thing with finding out lab results is that generally, the doctor will not call you with your results if they are good or, at the very least, not horrible enough to require immediate attention. Why is this? Who knows. Perhaps its a matter of triage -- the doctors don't have the time to call every patient and tell him their labs look normal. Or maybe they don't want to answer questions about the results. Still, the wait is very frustrating. Anyone who has been there knows that the tension can get high, and waiting for important blood test results can unerve you like a college senior who is awaiting the results of his SATs. So I tell other patients who are pulling out their hair waiting for the doctor to call back with results from a test to not worry about it. If there was a problem, you would have known about it already. All of the lab procedures these days flag any wacky results and send them to the doctor immediately.

This is just a stock photo, and not my actual lab results. Damn, I wish my cholesterol was only 210.

So when I didn't get the results from the lab I dropped off, I didn't worry about it. "If there was a problem," I said to myself, "they would have called me by now." But for some reason, that explanation didn't settle right with me. While it may be true that doctors only call you if your routine labs were bad, what about when the lab taken was not mandatory? The November lab wasn't required by protocol -- more of a "just for shits and giggles" kind of inquiry. Would my doctor share that information with me -- especially if it was good news? If it was bad news, would they not tell me, considering that I was coming in a couple of weeks? Now I wasn't so sure. Thinking about it, I started pulling my hair out. (Actually, since I don't have much hair it was more like pulling scalp and peach fuzz.)

Finally, after nearly two weeks of waiting, I dropped an e-mail to my contact at BUSM asking about the labs. Of course, I didn't have the cojones to say that I was terrified that I didn't hear from anyone and I was worried sick and desparately wanted to know the results, but instead dropped a gentle "reminder" them of the lab and to verify that they were able to process the sample.

A couple hours later I got an e-mail from my doctor.

Tony,
We did receive your 24 hour urine collection. Protein has decreased to 10 g/day and lambda free light chain is not present anymore. Therefore, it seems that you are in remission at this point. We will see how long it lasts for! Hope you had a great thanksgiving.

It's funny. I get an e-mail stating that I am currently in remission from this awful disease, and my first thought was, "I still am leaking 10 grams of protein?!?" Shows where my priorities lie. Or how stubborn I truly am.

Of course, there's no pulling out the red carpet for me yet. This is all preliminary and too early to celebrate, but it's a start. And I'm sure that if the labs do change for the worse, the doctors will let me know.