Still ok. Aug 2009

Well, once again, it has been a long time since I updated the blog. As usual, I am sorry for the absence and I appreciate those of you who remain persistent in checking it. Maybe an RSS feed would be a good idea. I am still doing well considering everything that has gone on. It has been a hard road since my kidneys went on the fritz, but I am still fairly normal. I guess a run down of the cans and cannots might be good. I can walk, I cannot run. I can go up stairs, I cannot go up two stairs at a time. I can lift small objects, even a few grocery bags, I cannot do pull-ups (funny story). I can pee, I cannot pee enough to prevent my body from filling up with water without dialysis. Most days, I can drive, some days I cannot drive, or maybe rather, should not drive (on a closed course I’d be up for trying anything). I can eat with a little help, I cannot really seem to eat enough to gain back any of the weight I have lost. Luckily, I am remaining pretty stable in the low 140s (my pre-diagnosis weight was 175). I can shower, I cannot comb my hair because I have none (and I mean none, I feel like Mr. Bigglesworth, Dr. Evil’s cat). I can be alert and appear to be pretty normal and functional, I cannot keep that up for an entire day (some days for more than an hour or so). That said, I still feel really lucky for still doing so well. In July, we passed the three year mark since diagnosis. Quite a milestone. In the beginning, we were celebrating the weeks, then the months, and now three years, and I still have my mind in the game (or at least I think I do, which I guess is all that matters). It has been a grueling three years and very tough on Eva, my friends and family, and me, but we knew from the beginning, this was going to be a marathon, not a sprint. I really have no idea where we are in the race at this point. Neither the start line nor the finish line are in view.

I have not really been doing all that much and I apologize in advance, if I resume updating the blog, it may be pretty dull. We’ll see, if it gets really bad, I will just start making up stuff. I guess the big news is that Eva will be starting her MBA program at Pepperdine at the end of the month. I am really excited for her and also looking forward to learning a bit myself as I look over her shoulder from time to time. To reduce the commute for her, we moved earlier this summer and are just about settled in. I have to say, I love the location and the apartment though there are a few minor drawbacks. We moved to a small one bedroom in Pacific Palisades and are only a couple hundred meters from the water. Being close to the water and also the trails in the Santa Monica Mountains is wonderful. Plus, now we actually have a wall that separates the bedroom (before, we just had some vertical blinds as the divider and Eva is sort of sensitive to light when she sleeps - not ideal). The apartment was redone right before we moved in and I really love it, but we are right next to Sunset blvd. and it can be a little loud. Eva and I have entered what I call our curmudgeony phase and sort of rail against the various sources of noise. We shake our fists at the motorcycles, curse at the loud cars, and are currently working with the MTA to try to get the bus drivers to turn off their buses while they wait to begin their routes. I could not believe it, the other night, a bus was on and sitting there for 32 minutes before leaving. Typically, they will leave the bus on and then actually go to the Vons or talk on a cell phone outside of the bus. I have confronted a bus driver and she said that she leaves it on because occasionally, it won’t start again. Hmm, seems like we got some pretty sweet buses here in LA. I wonder why more people don’t ride them. The noise is what really bothers Eva and I, but every minute that they are sitting there with there engine on, they are getting 0 miles to the gallon and wasting gas that you and I pay for. Whew, thanks for letting me rant a bit.

Anyways, it has been pretty hard to travel with dialysis and the logistical issues that entails but Eva and I actually got out of town for the first time in a long time in late July. We did a road trip to Bryce and Zion Canyons and it was awesome. We spent one night in Vegas, then two in Bryce, two in Zion, and another night in Vegas on the way back. These canyons are pretty amazing. If you have never been, I highly recommend it (especially if you like rocks). Bryce has some really unique rock formations, really unlike anything anywhere else in the world. A lot of pinnacles, all grouped together starting at the rim of the canyon and going down into the canyon and also a few incredible natural arches. There were thunderstorms in the afternoons, and even some hail but otherwise the canyon was pretty warm. We attempted a short hike down into the canyon that did not work out all that well. I was having trouble going down (bad sign) and between the hot sun, the steep trail, my lack of fitness, and the looming thunderclouds coming over the ridge, we decided to turn back early. Good thing too, because I barely made it back up to the rim. Those reverse climbs can be pretty deceiving. People would stop and ask if I was OK. I guess my expression was a little worrisome. Eva was a little taken aback, she was taking care of me. I am so thankful for her, I might still be down there without her help. We decided to just drive to some overlooks for the remainder of that day (good idea). Zion was also spectacular and very different. On Bryce, you are on the rim, looking down into the canyon. At Zion, you are at the bottom of the canyon with the huge cliffs all around you. Totally different feel. Plus Zion has a small river running down it which always adds to the appeal. Just to give you an idea of the depth of the canyon, the floor is around 4000 ft. and the tops of some of the canyon walls are over 8000 ft. Really cool. At both parks, we were fortunate enough to stay at lodges inside the parks. You just could not beat the locations (unless you were backpacking). We brought the cycler and I dialyzed once at Bryce and once at Zion. What really helped was that both lodges had porters who would help you with all your stuff if you needed it. Eva and I can do it, but it really just makes life a whole lot easier. What is a large burden for Eva and I, really is not that big a deal for a big guy. If we manage any trips in the future, I am sure we will be staying at places with porters, they are key. We did a couple hikes in Zion which went really well (I survived). It is still hard to think that four years ago, basically any hike that existed was doable for me and now I really can only complete the most basic hikes. I am saddened that Eva and I can no longer just march out into the wilderness and know we will be ok, and that even the easy hikes need a good looking over to insure I will make it. I wonder what I am missing. The curiosity that took me around the next bend or over the next little hill when I was young, is still alive in me, and eats at me, but then I try to remind myself that I am lucky for what I can do. I am lucky for what I can see. Vegas was pretty fun as sort of bookends to the trip. Eva and I are not millionaires nor are we in the poor house. In fact, we did not gamble at all. I do not know what it was, it just did not appeal to me or her this time. On the way to Vegas, I think I was in the hottest weather I have ever been. The outside temperature was 117 degrees F. I cannot imagine living in that kind of heat. Luckily the Prius performed beautifully (thanks dad and John B.) and we just marveled at the desert from our little comfort pod. It had been a long time since I had spent the night anywhere besides my apartment or my parents house, and it turned out really well. It sort of felt like old times (except when I was attempting to hike) and I felt so fortunate to share the experience with my wonderful wife. She is awesome.

Otherwise Eva and I have just been settling into the chemo patient routine. Get chemo, feel crappy for a few days, slowly start to feel normal, maybe get one or two good days, and then go back for more chemo. We have really gotten into gardening and are really getting a lot out of our tiny 2m by 2m balcony. We put up planter boxes and have a little herb garden with cilantro, oregano, thyme, sage, chives, margarine, and parsley. We got some other plants and then as we were running out of space, we got a rack to really maximize our gardening area. Sometimes we look over our miniscule little green space and I think we probably have the same expressions as if we were looking out over acres of cultivated land. Personally, I am just amazed that seeds actually do turn into plants. Another victory was getting an orchid to reshoot and rebloom. That orchid is basically like a child to us. Disturb it and beware our wrath.

Well, I think that is about enough for now. I hope each and every one of you are doing well. Remember, if there are things you really want to do, get out there and do them. You never know what may happen and someday you may not be able to accomplish them. Now is the time. If another blog absence occurs, just remember what I would always tell my mother, “If you hear nothing, everything is probably ok.”

Live Strong and Carpe Vitam,
Tyler



Here are Eva and I at Bryce Canyon. Now there is a happy guy.



Natural arch. Just stunning. Yikes, I am still getting used to seeing my bald head in pictures.



As we were driving, we came across a tree that was still smoldering from a lightning strike. It looked like the base of the tree had exploded. Pretty gnarly.



Do you want to know why I listen to my wife? Because she is really strong and I do not want to know the consequences of not doing what she tells me to do.



Me in the narrows at Zion. The walls on both sides of the canyon basically go straight up for hundreds of feet.



Eva on the top of Angel’s landing. I did not go on this hike with her. There was a lot of elevation gain but, obviously, the view was pretty nice. Two weeks after Eva did this hike, a woman fell to her death at the top while hiking with her husband and two young children. Quite a tragedy, but, needless to say, this hike is not for everyone. I am glad Eva is smart, cautious, sure-footed, and not scared of heights and am so thankful nothing happened to her.



A silhouette of our orchid just as it was beginning to bloom. Our pride and joy.