No, this is not the next amazing death metal band, or the latest post-apocalyptic young adult novel (although this would be an amazing band name and book title). My docs have agreed that I should start the Mekanist inhibitor along with the debrafenib I’m already taking, so I’ll pick it up tomorrow. I’m excited to start it, and I just hope that I don’t get too many bad side effects from it, especially since I’m tolerating debraf so well alone.
I also had a good chat with the palliative care doc about a plan to wean me off morphine (maybe). He helped me plan a pill schedule that hopefully will help me figure out what’s going on. Basically, we need to determine if the cramping and aches I feel at low doses of morphine are really from withdrawal, or if they are actual symptoms caused by the cancer. He said that the size of the tumor really has relatively little to do with the issues I might experience, so even a small mass might be messing me up. So if I’m still feeling yucky even with a slow weaning, it could be that I really do have actual issues that the morphine is helping. If that’s the case, I’m totally fine staying on it because it’s really doing something for me. I just don’t want to take an opiate for the sake of taking it, you know?
Emmie is in such a good place right now. I am so proud of her. This morning, she went to the dentist for the first time and she did SUCH a good job. We went to a specialized pediatric dentist, and it was exactly what she needed. They had a doll to show her exactly what they would be doing, let her see and touch the different instruments, and the hygienist had the greatest attitude with her. She was so prepared that by the time they were ready to do actual cleaning, she was on the chair with a smile and let them do absolutely everything without a single complaint or moment of fear. I was SO proud of her!
She’s been diving into new experiences with much more comfort and bravery than any time in her past. She still has moments of needing me nearby, but if she knows there is an expectation from an adult (like in a class), she will square her little shoulder and do what needs to be done with nary a backwards glance at me.
She is also in one of those moments of unbelievable sweetness. She randomly bursts out with “IloveyouMommyIloveyouMommyIloveyouMommy” at the top of her lungs. She is more willing to give hugs and kisses (although they are still relatively sparing). She likes to snuggle again. She speaks glowingly of her best friend at school and is undyingly loyal to him. She is indifferent to all other classmates.
We have so many tiny moments each day that make me so proud to be her mother. We got her a preschool book with a “magic pen” that lets her select the correct answer. She apparently can identify starting letters of most words, can identify many signs (like “Do not enter”?), and can quickly assess which group has more items, even if each group has 6+ and the difference is only one item (I took longer to do it!). Peter read a beginning reader with her the other night and he said she could recognize most of the words, even “reading” some of the pages entirely on her own. She is constantly asking about the world, what words mean (like that time I had to define “constitutional democracy” for her), and she always responds to my answers with the sweetest little, “Oh.” Like the answer makes complete sense and has satisfied her curiosity. Except if rarely does and then we are off on another long string of questions, answers and definitions.
As we left Emmie’s dentist, we made an appointment for her 6 month follow up. 2 months ago, I wasn’t sure I would even be here right now, let alone next August. Now I am pretty confident I will be able to make that appointment with her, and I couldn’t be happier about it.