Friday, March 16, 2012

Training Wheels

This week I spoke with the neuropsychologist who I am going to be doing some cognitive rehab with. Last year, the guy who did my evaluations said that if he felt it was necessary that I should just start it whether or not insurance approved it and pay out of pocket and while I did some of that, this year we’re waiting to see if the insurance approves of it so that the costs are less (time is not as critical). In last year’s evaluations, he informally recommended Lumosity as something to consider and this year he believes the results from it show enough to where it’s a formal recommendation. It’ll be interesting to see how this one on one rehab will go. We talked about it and the short version is that it’s going to be trying to both improve and compensate for some of the ways some memory and language things have shifted. I’ve come to accept that will power is a great thing but that sometimes you need help and sometimes, the guy who used to be able to remember everything has to swallow his pride and do little things like get an app for his iphone that lets him record things, use that camera to take pictures to remember things. It will also try to change apparently an increase in impulsivity which I still don’t understand how both of my neuropsychological evaluations show me as being more calm and yet more impulsive simultaneously.

I also sat with a counselor from Wonders and Worries this week who will be meeting with Kiana for at least six sessions and give her some ways to process it. I’ve tried to do address some of those things on my own with Kiana by some of the Livestrong functions, some reading material, taking her and showing her the MRI and just saying things to her where she very cutely says, “Daddy has a booboo in his left temporal lobe” even teaching her where to recognize it in a chart of the brain. But when I trained for the marathon on my own, the first time I did it on my own and the next year I did it with people with more experience and it went much better. Maybe after whatever made me unconscious two weeks ago and after all the one year follow ups, it’s time to recognize that someone with more training should have been called in the first place but like so most things in life, it’s better late than never. They pointed out one thing that I’m not sure where they’ll go and I’m not sure I have an explanation as to why we’ve never done it but they asked if I used the word cancer around her and somehow I haven’t, and I wonder and worry whether or not naively I think protecting her from the word protects her from the other effects. I am back driving and everyone keeps pointing out that it's great to have my independence and it is but the best part of it was that, because Kiana is with her mom this week for spring break, I went and had lunch with Kiana at her daycare 3 days.

This week, I also sat for the Livestrong postcard photo shoot at Mellow Johnnys where I got introduced to the Trek bike that I’m going to be lent for the 100 mile bike ride at the Davis Challenge. They measured my height and torso to get a good fit and tweaked the seat and the handlebars and I learned that riding a bicycle is well not like riding a bicycle. As they tweaked things and mentioned how having things down to the right millimeter mattered, I remembered the last time I heard things in millimeters matter was this growth inside my head. The guy who is going to create my training schedule talked to me and said that while they are worried about getting only two months to train me, they don’t want to lend me the bike early because he wants me to stay focused on Boston and apparently running can help cycling but not vice versa. They are hoping to raise $100,000 for Livestrong through this campaign, a thousand dollars for each mile I ride. Afterwards, I asked the guy helping me out what this type of bike costs…it’s more than I make in a month. So I’ll be riding a loaned bicycle that’s about what men should pay for an engagement ring so I guess we’ll say that I’m committed to this event. And if things go right, it will raise more money for that organization than I make in two years. That’s astounding…but I hope that any money that is related to me and cancer is always far more going to things like this and the Brainpower5k than to my medical bills. The guy who is volunteering to create my training schedule will be someone I listen to a lot about equipment and exercises because (roll eyes here), there’s no need to reinvent the wheel. Actually, he said the main muscles I need to work on more than from running are the core muscles since you lean more on a bike. I did a lot more (read as did some) sit ups and pushups that night than I had done in a while.

And the dots kept connecting this week. Matt Cotcher, a friend I made at that 5k that talked me into doing a Mohawk was over for dinner. It was the first time we’d ever had a chance to talk in person 1-on-1 and as he told me about his rehab, staring at a mirror trying to remember to use both sides of his face to talk, that some of his physical impairments have made it difficult to find a job, I counted my blessing that my rehab is what it is (with that said, I made a mistake at work where trusting my own handwriting that because it didn’t have enough details helped me misremember something that caused some problems). I met his wife Amanda for the first time, a woman who by his own admission is well out of his league, who was engaged when all of this came up and put off their wedding so he could do some of that rehab and has been married to him for a while. No words can adequately describe the fact that he recognizes that blessing. Just by remembering that he had talked me into that Hawktober event and knowing my hair was too scruffy for the photoshoot the next day, I went and got the most expensive haircut of my life from Floyd’s with the same guy that had done my Mohawk. I’ll probably never value my hair that much but I will grant that I understood why my $8 haircut is not as good as that $20 one.

They asked me a few questions more for the interview and I answered them as well as I could but they asked if there was anything else new I was going to do in light of this…and there is. Kiana’s with her mom this weekend but next weekend, I am going to take one of those big steps that I still remember being very frightened by and very comforted by when my stepdad hugged me after I fell, I am going to take the training wheels off her bike and help her ride.

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