Battle Hymns of a Hot Mess Mom

I got an email from the study drug clinician: “So, we just heard back from the sponsor. According to them, you do not meet the criteria to get the medication because your blasts are <5% (You are only 1.3% which is good). The team contacted Dr. A and Dr. P so they can talk to the medical monitor to clarify.”

So….now what? Don’t know. I have to wait for Dr. P to come back and figure out what is happening. I can’t control it. It was for compassionate use so I just have to roll with it.

Oh the drama. I have to laugh a little as well. Ia is my clinical research RN. He sent me the email that said I was rejected from the study. That Dr. P wouldn’t be there. So I didn’t rush to a fake appointment that my doctor wouldn’t even be at. Well, I was an hour late to the appointment because he was there. That’s how things go sometimes you can’t control the nonsense. Ia comes in and says, “Um yea Dr. P is here but he wasn’t supposed to be.” I nodded and said okay. Then he starts with his speech “So the doctors talked to the Sponsors and they are willing to accept you but you have to still have cancer.” Ummm….huh?? What gibberish are you saying sir? I took a moment and said what I thought I heard. And we went a few more rounds until Dr P got there.

Because I just got the T cell transplant a couple of weeks ago; I may be in remission. (Dr. P confirmed it doesn’t work like that.) In order to comply with the study’s rules I needed a new bone marrow biopsy to prove MRD shows relapse. He said, “If you get rejected because it’s 0%. I couldn’t be happier!” So I have a biopsy on 2/8 and we go from there. One step at a time.

Also according to Dr. P – I am going to bed too early. The meds are working. But when I go to bed at 8:30 – 9:30pm after 6 hours I have actually used the efficacy of the meds. Oops. He trolled me, “Do you have to go to bed at 8:30pm? Like can you stay up until 10:00pm? You’re not 80. You’re also not a toddler. You don’t need to sleep for 12 hours.” Damn Dr. P…like man. Made me laugh.