One month… without brain cancer appointments… for the first time in 2 years. We are working on scheduling an appointment where we work more carefully on the seizure monitoring since we’re less worried about the cancer and because that’s the biggest issue on the custody thing though to me it’s a lawyer trying to find a way to be what in my opinion is in the best interest of my child. Let me state this clearly. I have never though that Kiana’s mother was a bad mother. Do I think that a mother who walks away from her child that easily no matter what the parents problems are is thinking rationally? No I don’t. Do I think someone who leaves a 10 year relationship while someone isn’t cleared to drive or work and has to be supervised was at the top of their game? No I don’t. Do I think those same characteristics show in someone who all of a suddent is asking that I only have supervised visits? Yes I do. As the livestrong video states (www.livestrong.org/iram) I think many many of my actions helped her disconnect and working in families where parents seem to disconnect from their children because they are half of someone else, I think (and this is only an opinion) that she disconnected some from our child as well to be able to do so. Psychoanalyze that however you want.
With that said, let me state that Kiana’s mom was better on the emotional side when this all started than I was by a mile if not by a marathon. She wanted us to go to counseling. She wanted us to enroll Kiana in wonders and worries. And as I’ve said many times, I worried far too much about the financial stuff and not the other items and I was wrong to not focus on the bigger picture. Some of this stuff takes time. Livestrong staff have told me that many of their clients don’t show up until after treatment. and that it's often the family members who are hit hardest. And obviously I've been fairly stoic through much of this process. Kiana's mother absorbed it faster and I wasn't there well enough for her. Yesterday I went to Livestrong's cancer transitions program. Changes in life take time to absorb.
Why did it take this long to accept some of the time off work? You're talking to the guy who snuck out of the hospital to run, put off brain cancer surgery to run a marathon, and went back to work as soon as possible. I went to work the day after they found me collapsed and took minimally time off after both times my brain got cut into. I was pissed when people handed me checks and gift certificates. It took time to realize that doing this alone is dumb. I understood the old phrase that its easier to give than to receive and you can see some of the obligation I still feel from the cancer stuff I help with but also believing that at some level it reflects that if we don't all hang together we'll hang separately. Does anyone think I run because it’s awesome? Running is a place that still works and yes talking about myself is where it still works. This has made people wonder why don’t I have a job. If talking about your life and running well paid the bills and came with health insurance, point me there right away. But let’s be frank, those are skills my daughter has.
As I woke up this morning, I made waffles just so that I could say in the morning I’m making waffles. I put on Christmas music. At lunch today I’ll meet with the minister I’ve met with for over a year. And I called today to schedule my next appointment with my local neuro oncologist, January 22nd. I am trying to set up an appointment with another doctor who is far more specialized in seizures since that’s the argument Kiana’s mother want to take. There are many studies that if I was a millionaire they would do just like neuropsychological rehab was once recommended but the insurance never approved it but I will also take raw direction like I have with lumosity. Interestingly enough, they along with all my doctors got a Christmas card. Lumosity wrote me back and they want to do a feature on me for their website. Surprisingly enough, they got consent. I am not all I used to be but I am okay with the feature because while some things to quote a doctor can’t be helped because they are structural not chemical balance, I am still trying. And honestly, in some features that just make life easier more fun, I am probably better due to their website.
Tonight there’s a lecture at UT of 40 years of the war on cancer and I hope to get to it if I find a ride. Tomorrow I run to train for the Livestrong marathon. Cancer and it’s side effect picked the wrong guy to have a fight with. I loved and love Kiana’s mother but I’m not signing up for less time with her while I’m stable.
Still my emotions today are both thank God and fuck yeah. If you think that getting your brain cut into a couple of times, getting dye injected into it regularly to see if your best organ is turning against you, taking pills twice a day so that you know you won't wake up in an ambulance, sitting through over a 100 medical appointments where they draw your blood and test how well you walk, talk, shift, remember... yeah it's going well and for that I am grateful. But the process itself has some annoyances and to avoid it for a month brings some raw emotions and if you can go through it with only wholesome cookie cutter statements, more power to you but I am glad to have both sides of the human scale, the sophistaced grateful stand but also the raw fuck yeah scale. Judge me accordingly. The appointments never stop and appropriately enough of course there was a bill from Duke that arrived in the mail yesterday. If we ever have a month without bills or appointments or phone calls, it’ll be a bigger thank God but also a bigger fuck yeah.
Kiana’s mother’s attorney thinks that I have no right to deny her my medical records and thinks that I don’t know Texas law and wants me to tell her what law is protecting me. Judge me accordingly. But Rule 509b, Texas Rules of Evidence protects me from handing it over without a judge’s order. If a judge wants to make their case why they are over ruling Texas law, I’ll accept their authority but the opposing parties counsel has none in my life. The reason I don’t do it by the way is not because of anything to hide but because the impression I have of her attorney is that she’s trying to find some technicality. And I believe with every ounce of my being that the best parts of me have been for Kiana. I’ve given up running teams, serving on boards and many things I did this before that to make sure I don’t miss a moment. And today on the first month without a cancer appoinment, let me just say thank God and fuck yeah.