Weekly Update #14

I missed my first update last week. I took a break from most electronics over the Thanksgiving break.

I still have not started my new chemo regimen. Twice I have gone into the clinic only to find out that it is not yet authorized and I have to wait for the insurance dance. It is incredibly frustrating to keep waiting. This new regimen feels like a wave that is about to crash over me, and I want to get out of its shadow and get it over with. I want to know how destructive it’s going to be, so I can plan how I’m going to deal with it.

It’s also stressing me out about my schedule. My dad is coming to help out next week, and I would really like to be getting treatment then. I currently have doses 2-4 scheduled in a way that works for my family, and I need dose 1 to happen next week to keep that schedule. I have never had issues with insurance denying treatments so I’m not worried about that, just tired of waiting for the process to run its course.

I have another thing that I cannot get off my mind. Since April I have been on an advisory board for a new clinic being created here, the Livestrong Cancer Institute. Their goal is to treat cancer in a whole new way, very patient centered and including social and emotional issues in their care. It is a thrilling project to be involved in and I’ve found it incredibly fulfilling. What is stressing me out is that they’ve invited me to be patient zero. They’re starting with GI cancer and an adolescent/young adult focus, so I am exactly their target audience. I would really love to give up the travel to Houston – it would be so great to have my husband be able to attend some appointments with me, have surgeries locally and have friends visit me, remove disruption from our lives from me being gone so often. And the care at the new cancer sounds so comforting. But . . . it means giving up the care team I’ve built up that I love. My new oncologist at MD Anderson makes me feel so safe and happy. I know the name of every person I interact with at my local oncologist – from the phlebotomists to the schedulers. Can a start up environment provide the level of care I need? I can’t commit myself to worse care. I keep making up my mind not to switch, and then I go to help out at Livestrong and I don’t feel able to let the question go. In a few weeks I’m going to go act as myself in a mock operations day, pretend to be a patient considering switching to Livestrong. I am hoping that being in the space, with the team, and acting it out will feel clarifying. Either I’ll feel at home or I’ll know that it’s not time to switch yet.

In good news, the song I have been working on in a pilot program is done and it’s incredible. As soon as it’s up on Soundcloud I’ll put up a link!

2 thoughts on “Weekly Update #14

  1. Wow, what a couple of weeks! Fingers crossed they get your scheduling straightened out quickly.

    That Livestrong decision would be tough. I’ve only known my team for a few short weeks and am incredibly attached already! It sounds like being part of the advisory committee and getting to go through the mock events should really help. I would find it comforting.



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