Scan Results: Good!

I meant to write this a long time ago -- Jon got his PET scan results back, without much commentary from the people who read those things, and they are good. The treatment appears to be working. There is less evidence of active myeloma and nothing is worse than before. We already sort of suspected that it was working because his symptoms have abated. He has more energy, he has finally lost the cough that was part of his life for well over a year, and he is back in the kitchen, cooking and cleaning.

But it seems that we didn't understand that he was making a deal with the devil, taking this drug. It has completely taken away his taste buds. And his smell. They said that was a possible side effect. We didn't realize how total it would be. He cannot taste anything. This is a huge loss, and there is no way to know if and when he will get that back. It is hard to imagine the enormity of this, and he is wrestling with it all the time. Meanwhile, he gets his calories mostly from Boost.  In addition to no taste, he also has almost no saliva.

In my mind, this is just about as big as learning you have cancer. It's a whole new adjustment. And somehow losing your ability to eat is harder than learning that you have to spend the rest of your life in treatment, one way or another.

But we don't know anything about how long this treatment will last or if he will ever be able to taste again. He has to keep taking in calories to find out because there is no option there. And he has plenty of things to do, so he doesn't spend every minute of his day mourning this loss. 

We are all feeling it. It is hard. But thank goodness for this treatment (a shot every two weeks) that is so new no one can tell us yet to tell us what to expect. Jon's oncologist has never had a patient on this one. Pretty soon Jon has another conversation with Dr. Imus. We will see if he knows anything more about this, but he did warn us this could happen...