April 4th, 2010

Well, done everyone. I really like the banter in the comments section. Thank you all so much for contributing. I liked the support as well as the skepticism. Eva says I better be careful or else this blog will turn political real fast. I guess that is just one way that I have changed during this journey. I always thought pretty much along these lines, but the urgency and depth with which I hold my views has certainly increased. Again, I really enjoyed hearing different peoples thoughts and concerns. It is so important to be vigilant and really look at the world around us. If we do not keep each other honest, the system falls apart. That said, the more I look at the healthcare bill, the more I like it. In fact, I would prefer a number of provisions were enacted sooner. Regarding earmarks, I totally agree that so many are a waste of our tax dollars and some are basically institutionalized bribery, but remember, one man's pork is another man's midnight basketball league, or city beautification project, or free clinic. Often earmarks go to legitimate and beneficial projects. One drawback I see, is that some of the best projects are only funded in one small district. Though it is good to test pilot a project before implementing the more broadly, it would be nice if maybe we picked a few projects that were working well and funded them for everyone. Please correct me if I am wrong, but though the senate bill did have some special deals to get the votes of a few wavering senators, the reconciliation package removed those special deals and generally expanded medicaid for all states. Anyways, another little comment that got me thinking was Aunt Donna's. If she is arguing with her grandsons on Facebook, what am I? A social networking Neanderthal? That made me think that I may need to increase my online presence a bit. We will see if I have the courage. Just to stir the pot a bit, I thought that I might point out that for those of you who enjoy Medicare, you are living the socialist single payer system and loving it. Are those red stockings I see there comrade?

Just a heads up. In June, Pancan is going to do it's lobby days thing where a bunch of cancer survivors, caregivers, and friends all go to Washington DC and lobby for more funds for pancreatic research. I went last year and was really glad I did. It was really cool to see the inner workings of government. I am hoping to go again this year but it is always a toss up with my health. It is a long trip and it can be expensive, but if you have the time and the money, it is a great way to get involved. If you are lazy, like me, you can do a year's worth of awareness raising in one day (ok, two days with training). The more people from different locations, the better, because then we will get to meet with more different representatives. Just know going in that I will probably be in a different group as they are usually only about 5 people or so in each, but anyone who goes on my behalf can join me in my room for a little post lobbying medicating. All the details are on Pancan.org, just look for the Advocacy days link.


Well, other than these little political firestorms to fire me up, my life is pretty mundane at the moment. It is probably good, though, because I don't really think I have the energy for much more than I am currently doing. I have just finished my 6th week back at work (only 20hrs/week). Other than work, I dialyze three times a week at Ucla. Most of the rest of the time I sleep or nap or doze. I do not know what has happened but my energy has really fallen off over the last couple weeks. We have been trying to get labs but the unit has not been able to accomplish this. In the hospital, I had labs drawn everyday, and often got the results the next day. In the three weeks since I was released, I have gotten no lab results. We took labs, after I repeatedly asked to take them, and somehow they have been lost in the system. I'm currently not very pleased with the dialysis unit. Most of my sessions have been smooth but I had a rough one last Tuesday. The machine ended up clotting and I lost a bit of blood and just felt crappy the rest of the day. I was particularly agitated because it could have been avoided had the care partner been up to the challenge. Being the control freak that I am, it has been hard to have my well being out of my hands, especially after doing everything at home for so long. I am still doing really well and very thankful for my current condition, but it has been hard recently to keep positive. It just seems like everything is hard. Just little things, like putting socks on, or pulling my pants up, or getting a bowl of cereal, or going anywhere. I feel bad that I cannot really contribute to keeping the apartment clean or in order and really use a lot of my energy just to keep myself somewhat clean. For those of you who loath doing laundry or vacuuming, think for a minute about not being physically able to do it. It may sound nice at first, but it really is not the lazy utopia you may be envisioning. It is a constant battle in my head but I really try to appreciate the fact that at one time I could run, surf, dive, fly, waterski, hike, sail, dance (sort of) and do almost anything else I set my mind to. I tell myself that I was lucky to have been able to do those things at one time when so many people never even get the opportunity to, but it is hard not to feel bitter that those abilities have been taken away (hopefully temporarily). This disease, and especially the treatments, have taken a toll. I will certainly keep fighting, but it is getting tougher and tougher and has been wearing me down for a long time.

On a lighter note, one thing that keeps a smile on my face is a new toy. I feel incredibly fortunate to have been amongst the first to get an iPad. I had been looking forward to this for quite a while and after playing with it for a couple days, it is pretty sweet. I was talking with Eva and we both agreed, no one really needs an iPad, but, that said, I think everyone should have one. It is just a really cool way to interact with your computer. I loved browsing the web on the iPhone and this is even better. You see a link, you touch it, you want to zoom in on a picture, you double tap it, want to scroll up, flick the page up. Super intuitive. You can watch movies using the watch instantly feature from netflix or watch your TiVo with a sling box. Alright enough shameless Apple promotion for the time being. All in all, it is a pretty cool toy that should keep me occupied for at least a week or so.

Take Care and Live Strong,
Tyler