Well, the panel sat down and talked about my case and the short version is it’s not clear to a board of 20 plus experts where to go from here. For the time being we are not worried about the tumor and no one feels the need to do tumors any more frequently then every six months. I call that a win. The guy who didn’t want to take pain medications in the biopsy or surgery, who has always been hesitant about taking the anti seizure medication… well now I pushed and prodded to get essentially an add medication prescribed to him that only 1 doctor thinks might help. Only one of my original doctors from Duke thought it would help with the local guys thinking it served no function since they believe the damage is structural not chemical and that it could cause more seizure. Still, at some level I am grateful that the doctors are willing to try things even if they disagree… Obviously if you read this, I’ll let you know how it goes. I am putting starting it till Sunday after I do my mom’s first half marathon with her since theoretically it could trigger more seizures… but either way they labled the arm spasms that and I am restricted to driving until the day before the Austin marathon… somehow that Livestrong 100 mile bike training ride seems serendipitous. I walked to a medical appointment this week and I had promised Kiana I would have lunch with her at school this day and realized I wouldn't make it back so... I took the bus for the first time ever living in Austin. The smile on her face at lunch made it worth it.
I tried to continue the helpful spirit and while this Mohawk isn’t my style, I died it yellow for Livestrong day figuring if nothing else I should be a good sport. Then the day after that, I went to the cancer and transitions class and I’m continuing to be a fan of those guys, realizing that the rookie mistake I’ve made all along is not admitting some of these things to myself, and therefore to others. I have to keep, despite this memory, remembering that even if a lot of this is journey because no one has ever been quite through all of it, it doesn’t have to be alone. I’ve even offered to host a support group for young cancer since Livestrong was looking for people to do that.
Nonetheless, despite all that, I am heading to West Texas to run my mom’s first half marathon with her pushing a stroller. The legs still work and loving my mom and daughter still work. And I’m going to literally push that love in whatever way I can. This is titled eschew obfuscation (you should look that up) and to continue to make progress, I have to do that. Okay, it means avoid being unclear. Someone asked at my running group if I notice any differences from the surgery and I have all along and they are noted over and over again in my medical records, that I have a hard time remembering people and their names, it’s a facial recognition issue and with spatial orientation and with some immediate memory problems (ironically the guy who asked, I would ask someone who knows about this who they were a little while later). You can’t just throw that out to everyone but you shouldn’t try to hide it from everyone including yourself.
And in the midst of all that, I literally became a cancer poster child with one of my favorite pictures of Kiana and I now being on one of their poster… which I hope is helpful to someone cause at some level it feels… strange. One friend asked for one and Livestrong gave me 2 (they offered more but I didn’t know what to do with that), one for me and one for my mother. The friend offered a $100 donation to Livestrong to support my Austin marathon race so if you want one do something similar (it could be less) and I’m sure I can get you one.
My mom’s about to run her first half marathon and I’m going to run it pushing Kiana. At the latest doctors appointment my resting heart rate was 48… getting closer to the best it’s ever been (right after Boston at 47). So maybe my brain’s not what it was 2 years ago but my heart’s better.