This week we’ve had preliminary discussions with Nathan’s school and are well on our way to developing a plan for his return to school. Since exams at Sidwell (SFS for the cognoscenti) are after winter break his first day of school will be Jan 17 – the day he turns 17. In the meantime he’s working to make up classwork, getting Calculus tutoring (going very well, actually tutored by a Quaker who I knew slightly who taught math for 40 years in the Montgomery Md. County school system). The life is back in his eyes and and the bounce is in his step. He is now out with a friend taking a walk in bitter cold as he wants to chat with her privately. We had a total of 4 doc visits this week for him, and all came out “tip top” as Nathan has taken to saying. No more checkups or other visits for 3 months. Yea!
This week I got a few shots to boost my white cell blood count and got my port installed. The port is amazing, I was so worried and it is fine. Imagine a modern plastic soda bottle cap, imagine it with a soft squishy top (like a pin cushion) and a few thin hoses going out. The bottle cap goes under my skin on right chest, the hoses go in veins to my heart, and they just poke through my skin into the squishy surface to give the magic infusions that are making me well. Four hour appointment today and no pain or IV challenges. As I’ve been saying the port is going to be my friend. The device (saw it before insertion) is even purple, my favorite color.
The part that has been more challenging this week is insurance reimbursements. Somehow I’m the only person in the Blue Cross system who experienced a new year on Jan. 1. I thought that was standard, but oh no, all my drug approvals were revoked Jan 1, and had to be put back in place. And one of Nathan’s (the most important) had been rejected retrospectively and also moving forward. His doctor has confidence it will be reinstated since it was the only thing that worked… This part of this process is really hard for me. I try to get on top of it plans then they dissolved. My inner manager wants to let them LEARN how to do this RIGHT. That “how do you run a program properly” sense of dealing with the public was honed through close to 30 years of working on surveys and data collections where you need to train and retrain those who come in contact with respondents. And my turning into a management consultant at the same time I’m a patient is not helpful in these moments. At one point I was told that my chemo for today was cancelled because no drugs were approved and i really lost it. Resolution, advocate for myself forget the management consulting sideline. The chemo did happen.
We continue to appreciate cards and continue to be self sufficient on rides, food etc. Thanks so much for your continued well wishes and loving concern. Thanks particularly to Meredith who set up my healing calendar and Colleen who keeps coming up with creative ways to deal with these insurance issues.
Prayer, Let me be grateful for and gentile with the good people at the insurance companies, doctor’s offices, infusion center, and hospitals who all are doing their best for Nathan and my care. It sucks to be in this situation but I pray to bring my best self to these interactions and find grace in the hard moments to come. Please pray with me and for me to these ends.