I thought since I mentioned Josh's MRI was on the 4th, that I better post. I haven't had the greatest week (due to a handful of things) and I hope that won't reflect in tone of this post.
Josh's MRI was on Tuesday morning and then we met with Dr. Cohen and Dr. Coleman at the clinic later that afternoon to discuss Josh's well-being and the scans. We left the office feeling good and confident. The verdict was another stable month to chalk up to success.
Wednesday morning Josh had an infusion where we received the formal MRI report that stated change in two different areas and that they looked like disease progression. So, I went into survival mode. I started reading all the other reports to compare the wording, compare the jargon, compare the emphasis of previous scans. After finding consistencies in specific phrases and words I was able to gather what was a description of location or what was the name of a part of the brain. I understood well enough to know what the report said: They (the radiologists) believe the tumor to be growing. I was confidant that my first understanding of the report was right.
You better believe I was on the phone dialing the nurses to ask them about it. I told them:
"I am not the quiet type to just wait around for something to happen."
I told them I didn't want to be naive, that I don't want to be caught off guard, and that I always wanted to hear the absolute truth even if it was ugly.
The nurse assured me that she would have the doctor call me back. Hours passed. No phone call. I called again and left a message but then had to leave. Dr. Cohen called while I was gone. Ugh.
I called and left another message this morning before I had to take Eliza to the doctor. (Poor sick baby) While I was gone the nurse called. I called. Finally later this afternoon I heard from both Dr. Cohen and Dr. Coleman. They agree that the places the radiologist flagged has changed, but feel it is not significant enough to call it tumor progression. They said they don't use that particular series to diagnose progression, and they would just watch it at his next scan in 10 weeks. They couldn't say it was nothing, but felt Josh is "essentially stable." I am now of the opinion that
stable and
essentially stable have two different meanings.
So there you have it. A bunch of ambiguity and uncertainty. Conflicting reports and a not-so reassurance from the doctors. The positive side is that, at least for now, the doctors feel like it is not progressing, and that is good news.
