This weekend was packed full of excitement! On Thursday afternoon I took the train up to LA again because I really wanted to attend a free brain tumor conference at UCLA. I went by myself hoping to find some additional insight into to my condition and see if the experts there had any new advice for me. It was great to see some familiar faces there, and make some new friends. I brought some “TUMORS SUCK” stickers with me, and by the end of the conference everyone was wearing one! They were a big hit! I found the conference very enlightening; however I did not find the new advice from the experts I was looking for. Since my case is so unique, and it is relatively early I will just have to be content waiting and continue to do what I am doing. I am still progressing, but I want to do everything in my power to nurture this process.
Friday was the first day of the conference. I now realize that, based on the location of my tumor between the brain stem and cerebellum, I am either really brave or really dumb. Actually, I think I can lean towards the stubborn/dumb side. To take that kind of a risk you really have to be a little of both, but you have to be fully aware of the consequences. I consider myself VERY lucky, so I am not taking ANYTHING for granted! I’m not out of the water yet, but I feel like I am back in control (to a certain extent). I had the opportunity to pick some of the smartest brains in Neuro-oncology and I still haven’t heard any new advice on how to handle the ataxia in my left arm and the intention tremor in my right arm other than “keep doing what you are doing”. My expertise is rehabilitation, but no doctor knows exactly what to do with me next. I am convinced that if I sit around and wait, things will not progress for me. I will have to take things into my own hands. Friday night, I got to meet up with some friends in Santa Monica. We have laid the groundwork for some fun activities this summer. Oooooo… It’s gonna so fun!
Sat was day two of the conference. It was definitely more intimate then the first day with breakout sessions, so there was more room to ask questions. I think I enjoyed the conference more the second day. Looking around the rooms I noticed that I really stuck out. Not only was I one of the youngest guys in the room, but also walking slowly with the walker draws a lot of unwanted attention. I’m glad I’ve learned to ignore it. I realize that right now I still need the walker to walk with “modified independence”. The dilemma I face now is whether to practice with the cane or no assistive device. The cane throws things off when I’m walking because the tremors in my right arm make cane placement unsteady. The ataxia in my left arm makes holding the cane stable very difficult. I am trying to problem solve this dilemma, so for now the walker has to do. The thing is, the walker is so bulky… try a quad cane? I am fine walking with someone holding my elbow, but I’m not independent. Sat night, I was exhausted after a long day. Me and my buddy grabbed some sushi and hung out at a friend’s place to play a little Guitar Hero 3. I was in bed by midnight! Whoa… in bed on a Sat night by 12 on a trip to LA!
Sunday, was my radio debut on the Vital Options Group Room on xm radio. I still speak a little slower than normal, but Selma, the host, did a great job getting everyone involved. I’ll post a link to it once it is available online. Being a part of the show was a great experience. I was expecting to go to a small back room. Turns out it was in one of the largest radio studios in LA, premier radio network. Someone told me Jim Rome, the sports show host does his show there! For a second I thought “for a normally quiet guy, what are you getting yourself into?” Everything I’m doing is very uncharacteristic for me. There were two other young adult survivors in the studio and 3 other guests called in, so my nervousness quickly resolved. I really enjoyed meeting the other young survivors. It was the first time I had participated in a “support group” type session. Figures I had to go all out for my first session. Anyways, the show went well and was actually quite fun for everyone involved. I’m looking forward to doing it again. Sunday night I got to meet up with some friends I hadn’t seen in a long time. A lot has happened in the past 2 years, but it was great to see that people are still the same.
I had to catch a late night bus to San Diego. I totally went old school traveling to LA on a train/ bus. It was kinda neat sitting in Union Station knowing that this was the primary means of transportation before commercial airlines, green house gases, or air pollution. It was a simpler time then. Not to mention, this form of travel is much “greener” than driving a car up there. I didn’t get the answers I was looking for in LA, but the contacts I made and have re-established made my throwback travel well worth the effort. I have a feeling more crazy stuff is in the works… stay tuned.
Physically I’m still making progress returning to what I would normally be doing. This is taking a REALLY long time. I consider myself to be a very lucky man, but in order to keep my sanity and appease the creative beast within me, I’ve had to resort to a kinder gentler time… my childhood. Ah yes, those were the days of eating sugary cereal, coloring, writing in notebooks, playing video games, etc. Well, I’ve taken the “developmental” theories/progressions and applied them to my own rehab. Why not have fun with it right?
