Well it has been a while again. I hope everyone has been well and keeping busy. OK, a couple items of business first.
1. June 22 is PANCAN’s Advocacy Day in Washington DC. If you have extra miles we would love to see you in DC (try to show up for the training on the 21st, too) but if you won’t be making the trip, you can still help in a big way. You don’t even need to leave your house. It would be awesome if you all could participate in PANCAN’s National Call-in. All the information is on pancan.org under the national call in heading. You will need to fill out a few web forms and then they will tell you who your senators and representative are and how to contact them. In addition to calling your own representative, it would really be helpful to me if you could call my representative, Dana Rohrabacher. He was a little tough to convince last year. Feel free to say what you want, but maybe you could mention that you are a dear friend of Tyler Noesen and that you fully support pancreatic cancer research funding. The more people who call, the bigger impact we will make. I know some of you have a lot of facebook friends and I am just making sure that everyone knows that they are totally welcome to call my representative and give him their 2 cents. It should be fun. This is democracy in action.
Here is Dana Rohrabacher’s info...
His Washington DC office number is (202) 225-2415.
His Huntington Beach office number is (714) 960-6483.
If you have the time, it would be great to call both numbers. Not to get your hopes up, but you probably won’t actually speak to Rep. Rohrabacher. You will probably speak to a staffer but that is just as good. They will pass the message along.
2. My old neighbor and friend, Dean McCollom, is doing a cross-country bike ride and is blogging along the way. You can follow his journey at
www.crazyguyonabike.com/doc/LemonadeMagnate
If you find yourself in a town as he is passing through, call him at 831-239-4118. I am sure he would love to share a meal and some stories.
3. Next week I will be in DC (Jun 20-24) and Richmond, Va (Jun 24-26) so if you are in the area, I would love to meet up and catch up.
Anyways, I am just plugging away as usual. Again, great comments. You guys rock! I really enjoy reading them. The bulk of my time these days is spent working and at dialysis or other medical appointments. After getting out of the hospital, the neuropathy in my legs did get worse for a few weeks before slowly starting to improve. I have been in a wheelchair since about March and it has certainly been a challenge. For a while, even the simplest tasks were exhausting and/or impossible without being able to stand on my feet. After being stumped for a while, I slowly started to figure out how to accomplish little tasks in the chair and recently, I have regained a decent amount of independence. For example, for about a month, I was essentially trapped within my building unless I had someone to help me out. There are two stairs and a pretty high curb between the door to the building and the street and no handrail which pretty much made it seem impossible for me to leave on my own. Eventually, I thought about it, and figured out how to accomplish this simple task. I open the door, transfer from my chair to the ground, scooch on my but down the stairs as I pull my wheelchair down the stairs next to me, put my chair into the street, and transfer back up into the chair. By the time I had figured out this sequence my arm strength had improved, which really helped me get in and out of my chair. Over the last couple months I have also learned how to use hand controls (which we had installed into our Prius), how to cling to the side of my car to get from the driver’s seat to the trunk, how to get my chair in and out of the back of the car by sitting on the back bumper, and how to go up or down a flight of stairs with my wheelchair (again using the scoot on the butt method) to get to the parking garage in our building which is between floors that the elevator services. While these are very useful skills to get around while being impaired, mobility-wise, I have also gotten pretty good at doing wheelies and really have a lot of fun showing off from time to time.
Recently, the nerves in my legs have started to regenerate and my leg strength is starting to come back. I can get around decently with a walker these days and have even started trying out a 4-point cane at physical therapy (with a support belt and my very strong physical therapist with his hand on my back ready to pick my up if I start to go down). It has been very nice to be able to stand a bit without my knees immediately buckling. I still don’t really have any calf strength and cannot really stabilize myself very well, so when I do walk a little (between the parallel bars at PT), it looks like I am a bit of a drunkard.
Otherwise, things are going pretty well. I had a fun day at the butterfly pavilion and IMAX in Exposition Park with Nate and Becky last Sunday and had dinner with my physical therapist, Jafari on Wednesday. The folks came over for the Laker game last night (Go Lakers!) and I am looking forward to my trip next week. Eva is doing well and is in Chicago for the summer, interning at Abbott (who manufactures Synthroid, which I am on, and a few other drugs I have been on in the past). Seems like she is working with nice people and that they are taking good care of her. It will be tough without her for a few months but the timing worked out pretty well as I regained a lot of independence (like driving myself places) right before she was about to leave. Sometimes things workout pretty well.
I hope everything is going well for all of you and if you have the time, a few phone calls would be greatly appreciated next Tuesday.
Take Care and Live Strong,
Tyler
Friday, June 18, 2010
Sunday, April 04, 2010
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
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
Sunday, March 21, 2010
Health Care Vote Tonight 3-21-2010
I was a little fired up when I wrote this. Forgive the proselytizing.
I am writing today as an advocate of the health care reform bill that is being voted on in congress today. At this point, it is looking like the Senate bill will be passed by the house and then reconciled once the president has signed it into law. Wow, what a process it has been. I have personally been both inspired and horrified by the legislative process and people on both sides of the debate. I cannot believe how hard it has been to get to this point. I guess I just don’t understand. There seems to be widespread suspicion of the government these days I and I just do not get it. Maybe I am naive, but the government has done right by me during my hour of need. The safety net that we have and are fashioning should catch you on your way down, not restrict you on your way up. I think the health care legislation is another step in strengthening the net so that our most vulnerable are not forgotten. I feel that the character of a society is shown by how it treats its most vulnerable citizens. Do we feed our poor or merely look down on them for not being able to provide for themselves? Do we help our disabled or mock them? Do we detain our convicts humanely or starve them in squalor? How we treat those less fortunate than us, reflects back upon us. Again, I feel that the sacrifice we all will make to extend health coverage to nearly all Americans is miniscule compared to the enormous benefit individuals (and the rest of us) get by being covered and the nation gets by raising its moral standard. Today will, hopefully, be the day that the richest nation on earth finally decided to look after all of its citizens, rich and poor. You personally may not experience a medical bankruptcy, but you could, or someone close to you could. Ask yourself, how much is it worth to you, to have the security of knowing that medical bankruptcy will not happen to you or a loved one. That piece of mind is worth a lot to me. Many times more that whatever small tax increases, if any, I will bear.
Of course, I have a very unique perspective and, like anyone, have my own personal biases. I welcome all comments an criticisms, especially those who disagree with me. Perhaps concerns can be posted and I can make an attempt to alleviate them through the comments section.
Anyways, enough lecturing. A quick update on my health...My leg strength has continued to degenerate and it is pretty tough to get around these days. I spent a week in the hospital to try to figure it out and it looks like chemo initially damaged the nerves and then they were damaged further when I worked out while my creatanine was too high because I was not getting enough dialysis. Solution: dialyze more and wait for the nerves to regenerate (which hopefully they will). It just takes time, lots of time I am told, like months. We are figuring things out slowly but it has been tough. Few of the places I frequent are really wheelchair accessible. It is not that they are accessible or not, but it is more of a spectrum. Some places are easier than others. UCLA is fairly good. My apartment, not so much. My parent’s house, good in some ways, less so in others. For instance, there are only two small steps to get into my parents house, but the bathroom doors are not standard and my wheelchair will not fit through them. My walker will make it if I go sideways, but it is a little tricky. It has also been straining emotionally to be so dependent on Eva and my parents. I feel very dependent and it is also hard to feel so helpless if someone accidentally puts your walker just out of reach. Ok, I could crawl to it, but then how would I get back up on my feet once I was there. I would have to crawl back to the couch or bed, dragging the walker, try to get up onto the bed, and then try to get up on my feet. Everything just becomes that much harder. One victory yesterday, was figuring out how to shower at my apartment. There are no bars to hold onto and the lip for the shower is about 12 inches high. I can barely lift my foot 12 inches, let alone balance on one foot while I step over the lip into the shower. Our solution was to get two folding chairs. We put one into the shower and one just out side. I sit on the outside one, transfer to the inside one, and while sitting on the inside one, lift my legs into the shower. Eva is spotting me the whole time. Then she leaves, I enjoy my shower (sorry earth, once I am in, I love it, so I use a bit more water than I should), and I yell when I am done. She helps as I reverse the entry process and we are done. It was a good thing we figured it out because I was getting a little musty. Those little clean wipes can keep you going for a few days, but there is nothing quite like a nice warm shower. Otherwise, work has been going pretty well. They are pretty awesome people and have been so kind and understanding. I hope I am contributing to the group. Eva is still studying hard. The folks are doing well. Last Sunday, we all went to a Breast Cancer 5K at Dodger Stadium. Eva and my dad ran and then helped my mom push me through the 5K walk in the wheelchair. I may not have been exerting myself, but I think my heart rate was elevated during most of the walk (lots of people, obstacles, and cracks). All in all, it was good to be out.
Take Care and Live Strong,
Tyler
Sunday, March 07, 2010
March 7th, 2010 Work and Play
Hi all. I guess it has been long enough since the last post. Someone mentioned that the “Happy New Year” sentiment is looking a little odd now that it is March. Mehh. Well, as usual, there have been a number of highs and lows over the last month or two. Generally, I have been doing very well, but as always, there have been some set backs, too. I have actually been off of chemo since late November and have been loving that. My PET scan looked pretty decent in November and my marker was down in December and I briefly thought that maybe this whole fiasco might be nearing its end. Unfortunately, in February, my marker was back up. It was not crazy, but it was elevated and I will probably go back on chemo in the near future. In January we figured out that I had a bit of hypothyroidism and my TSH was over 100 (normal is between 0.5-5, this hormone triggers the thyroid to do its thing. Basically it was working super hard to just get my thyroid to make a miniscule amount of thyroid hormone). It was odd that I was still just so lethargic after being off of chemo for a while and after a week or two of taking synthetic thyroid hormone, I really started to perk up. I would actually stay awake the entire day and be alert and aware, it was amazing. Another issue has been some neuropathy in my legs. In December it started getting pretty bad and lots of the feeling has been lost in my feet. Also, because the muscles were not getting stimulated, they weakened, especially my shin. This resulted in what they call foot drop. When I would take a step forward, I could not lift up my toe and it would tend to catch. Carpet was treacherous. I started physical therapy in December and the set me up with some AFOs (braces) to keep my toe up and it helped a lot. Immediately, I was able to walk like 3 or 4 times faster. Physical therapy continued and I was doing really well. I even joined the gym across the street. I was getting stronger, building endurance, and feeling really well. Then, about 2-3 weeks ago, something happened, and my muscles have been deteriorating ever since. Initially, we thought I overdid it at the gym one weekend but I never recovered, I just got weaker and weaker. The neurologist and nephrologist are puzzled. Almost all my labs are fine, I feel well, have good energy, I just cannot stand, walk, or get up out of low chairs. My calves feel like jello and are incredibly skinny. Not much more than skin and bone (and water at the end of the day). It has been pretty scary and I now use a walker just to get around the apartment. I realized the other day that I am basically like a toddler. To keep me in one place, all you need to do is surround me with a barier that is about 5 inches tall. That is all it would take. Eva mentioned I could get down and crawl over a 5 inch barrier, but I told what would I do then? Just crawl after that, I wouldn’t be able to get back on my feet. Now that I have revealed my kryptonite, please don’t use it against me. I guess I am getting some good experience of knowing what it is like to be truly mobility impaired. Poor Eva has to carry everything everywhere including supporting me with her shoulder as we go down the two stairs and the curb at the entrance to our building. She is a trooper. Hopefully we will figure out what is going on soon and then be able to address it. Well, enough blah blah about the aches and pains.
Eva and I have been keeping fairly busy. She is still going strong at Pepperdine and I actually started going back to work a couple weeks ago. I just go in one day a week for about 4 hours and do another 16 from home. The leg thing started right after I decided to go back and has been challenging, but again, Raytheon has been incredibly accommodating. They set me up with a little scooter that I use when i am at work and the lab has been incredibly welcoming and positive about my return. I think it has been good for me, too. Exercising my mind a bit. I have mostly just been writing reports which is pretty conducive to do from home. My primary reason for going back was to avoid COBRA and keep Eva and I on my work insurance but, aside from that, I am glad I am back working a bit. I like the work I do and it feels good to be a semi-productive member of society again. I just hope we can get this leg thing figured out and I can keep putting in my 20 hours.
Otherwise, Eva and I got out of town for a couple days and went down to Temecula. We really enjoy it down there and find it a great place to just hang out and relax. The notable occurrence this trip happened pool side. I was enjoying the jacuzzi as Eva finished up her work out and had the whole pool area to myself. A couple people joined me as she got changed and then, before she got back about a half dozen had come by. They seemed nice enough and mentioned that they were part of a healing group. Hmm. I asked where they were from, and most were from southern California, but a few had come from elsewhere including all the way from Germany. Eva joined me in the jacuzzi and then after her another 5 or six got in, too. Now, there is a guy with a microphone sort of organizing the crowd that is gathering in the pool. It was only about 10 minutes from when I was alone to when there were 70+ people in the pool area. Then, once everyone got a spot, the guy started playing a tape of himself going through a little chant with responses from the crowd.
“Everyone feeling good today?”
“We are feeling good”
“Everyone feeling fantastic?”
“We are feeling fantastic.”
“Super fantastic?”
“Super fantastic.”
“We are grateful for this great day?”
“We are grateful.”
“How grateful?”
“Super grateful.”
And on and on. Eva and I just looked at each other puzzled. We had both heard of groups like this, but never witnessed it fist hand. It was also a little unnerving because the 12 people in the jacuzzi were all facing us (we were between them and the pool and the leader guy) with their hands over their heads and would occasionally dip beneath the water (at which point the jacuzzi would overflow). Eva and I got out, saved our stuff from the water and decided it was probably time to go. But not before Eva “checked her emails” and took a little movie with her iphone. I love my wife, she’s awesome. From that point on, every little thing that weekend was super.
Eva and I have been trying to be a little more social, so if you have not heard from us in a while, give us a call or a txt. It has been working out really well to hang out with people in San Pedro while I dialyze. Nate and Becky have been wonderful company a number of times. I am sorry for my “hermitness” over the last few years. The first step is admitting you have a problem. We actually had a little dinner party at our place a couple weeks ago with some of Eva’s friends from Pepperdine and a few of my friends, too. It was a lot of fun and Eva set up a Hell’s Kitchen style, guess what food you are eating game. Boiled carrots and bell pepper stumped me but luckily my other two team members carried us to victory. I was surprised at how well everyone did. It was a little hectic to prepare as we did not get back from Temecula until after 3, but she still managed to pull off dinner for ten. Go Eva! I helped a little. I made the guacamole.
Last night, Eva and I went to the little thing put on by the PANCAN club at LB Poly HS. We did not really know what to expect but it turned out to be a great little event. It was a little variety show with different students singing and dancing and raising awareness. I was amazed at how well done the whole affair was. The had info packets from PANCAN, friendship bracelets, food, and purple everything. Someone mentioned that they raised over a thousand dollars. Pretty incredible considering muffins were only a buck. A number of the students introduced themselves to me and were very kind and seemed like really good kids. There is hope for the youth. This is a little hard to wrap my head around as I have grown pretty curmudgeonly these days. The president of the club’s best friends father was diagnosed last December and was sort of the catalyst and it was just really impressive what these young adults put together in a pretty short amount of time. Pretty touching, too. If the rest of us had the energy and enthusiasm of those youngsters, we would be a lot farther down the road to a cure, that is for sure.
Thats about it for now. I hope all are well and the new year has started off on a good note for everyone. As my Grandma used to say, “You have only got one body, so take care of it.” I’m trying Grandma, I’m trying.
Take Care and Live Strong,
Tyler
Eva and I have been keeping fairly busy. She is still going strong at Pepperdine and I actually started going back to work a couple weeks ago. I just go in one day a week for about 4 hours and do another 16 from home. The leg thing started right after I decided to go back and has been challenging, but again, Raytheon has been incredibly accommodating. They set me up with a little scooter that I use when i am at work and the lab has been incredibly welcoming and positive about my return. I think it has been good for me, too. Exercising my mind a bit. I have mostly just been writing reports which is pretty conducive to do from home. My primary reason for going back was to avoid COBRA and keep Eva and I on my work insurance but, aside from that, I am glad I am back working a bit. I like the work I do and it feels good to be a semi-productive member of society again. I just hope we can get this leg thing figured out and I can keep putting in my 20 hours.
Otherwise, Eva and I got out of town for a couple days and went down to Temecula. We really enjoy it down there and find it a great place to just hang out and relax. The notable occurrence this trip happened pool side. I was enjoying the jacuzzi as Eva finished up her work out and had the whole pool area to myself. A couple people joined me as she got changed and then, before she got back about a half dozen had come by. They seemed nice enough and mentioned that they were part of a healing group. Hmm. I asked where they were from, and most were from southern California, but a few had come from elsewhere including all the way from Germany. Eva joined me in the jacuzzi and then after her another 5 or six got in, too. Now, there is a guy with a microphone sort of organizing the crowd that is gathering in the pool. It was only about 10 minutes from when I was alone to when there were 70+ people in the pool area. Then, once everyone got a spot, the guy started playing a tape of himself going through a little chant with responses from the crowd.
“Everyone feeling good today?”
“We are feeling good”
“Everyone feeling fantastic?”
“We are feeling fantastic.”
“Super fantastic?”
“Super fantastic.”
“We are grateful for this great day?”
“We are grateful.”
“How grateful?”
“Super grateful.”
And on and on. Eva and I just looked at each other puzzled. We had both heard of groups like this, but never witnessed it fist hand. It was also a little unnerving because the 12 people in the jacuzzi were all facing us (we were between them and the pool and the leader guy) with their hands over their heads and would occasionally dip beneath the water (at which point the jacuzzi would overflow). Eva and I got out, saved our stuff from the water and decided it was probably time to go. But not before Eva “checked her emails” and took a little movie with her iphone. I love my wife, she’s awesome. From that point on, every little thing that weekend was super.
Eva and I have been trying to be a little more social, so if you have not heard from us in a while, give us a call or a txt. It has been working out really well to hang out with people in San Pedro while I dialyze. Nate and Becky have been wonderful company a number of times. I am sorry for my “hermitness” over the last few years. The first step is admitting you have a problem. We actually had a little dinner party at our place a couple weeks ago with some of Eva’s friends from Pepperdine and a few of my friends, too. It was a lot of fun and Eva set up a Hell’s Kitchen style, guess what food you are eating game. Boiled carrots and bell pepper stumped me but luckily my other two team members carried us to victory. I was surprised at how well everyone did. It was a little hectic to prepare as we did not get back from Temecula until after 3, but she still managed to pull off dinner for ten. Go Eva! I helped a little. I made the guacamole.
Last night, Eva and I went to the little thing put on by the PANCAN club at LB Poly HS. We did not really know what to expect but it turned out to be a great little event. It was a little variety show with different students singing and dancing and raising awareness. I was amazed at how well done the whole affair was. The had info packets from PANCAN, friendship bracelets, food, and purple everything. Someone mentioned that they raised over a thousand dollars. Pretty incredible considering muffins were only a buck. A number of the students introduced themselves to me and were very kind and seemed like really good kids. There is hope for the youth. This is a little hard to wrap my head around as I have grown pretty curmudgeonly these days. The president of the club’s best friends father was diagnosed last December and was sort of the catalyst and it was just really impressive what these young adults put together in a pretty short amount of time. Pretty touching, too. If the rest of us had the energy and enthusiasm of those youngsters, we would be a lot farther down the road to a cure, that is for sure.
Thats about it for now. I hope all are well and the new year has started off on a good note for everyone. As my Grandma used to say, “You have only got one body, so take care of it.” I’m trying Grandma, I’m trying.
Take Care and Live Strong,
Tyler
Monday, January 11, 2010
Happy New Year!
Happy New Year everyone! Wow, 2010, pretty amazing. There were times when I was not so sure I would see 2010, but here I am. I hope everyone had a wonderful holiday season. Were people good boys and girls and got what they wanted for Christmas, Hanukah, Kwanzaa, Ramadan, or any other holiday I may not be thinking of? Did everyone do their part to try to get this economy rolling again? I tried to be a good consuming American, but you know I am on a pretty fixed income. You do what you can.
As usual, there have been some ups and downs, though things seem to be going pretty well, health-wise, these days (knock on wood). I had a pretty decent scan in November and my marker has been fairly low recently, so we are holding off on chemo for the time being. I have actually been off for a good 8 weeks or so. I am actually feeling pretty well right now. The flip side is that my body, at this point, has pretty much been beat to crap and I am not really sure how much more chemo I can handle. The few months before we stopped, I got a lot of drugs without many breaks. Pretty much every week since the end of summer and I think we may have hit a bit of a tipping point here and there in my body. The peripheral neropathy is pretty bad as I really cannot feel my feet nor much on the very surface of my skin up my legs to around my calves. Without the sensory nerves in my feet and toes, standing becomes a little tricky sometimes.The motor nerves have also been damaged and the associated muscles have wasted away, especially my shins. It is basically impossible for me to raise my right foot or point my toe up. My left foot is affected, too, but there is still a bit of movement there. This all results in me walking very slowly and very hilariously. I tend to march, so as to bring my foot up high enough for my toe to clear the floor and then slap, because I don’t set my foot down heel, toe, more like all at once. I think it sort of looks like a high stepping duck. I am also painfully slow. It is often a race against the clock when I cross larger streets. I barely made it across Sunset the other day, whew, pretty stressful, too. Luckily, I have started physical therapy and, though progress is slow, I have noticed a difference after the first 3 weeks. My therapist gives me a really good workout every session which greatly pleases Eva. Somehow, I still have trouble with food. I have a hard time finding food I like and then often have a bit of pain and discomfort digesting and expelling it. I have managed to put on about 10 pounds, but it is hard keeping it on. One exciting moment was when, about two weeks ago, hair started coming in. It was awesome, little sprouts on my head, my mustache (well my pathetic teenage dirt-on-lip mustache), my legs, my arms (barely), and a few on my chin. My chest and armpits remain hairless about which I have mixed feelings. Right now it looks like I have a buzz cut. The really great part is that I now have eyebrows and eyelashes. What a difference that makes. Before, I looked like a super aerodynamic alien egg. Now, fairly human, though, I will admit, markedly less aerodynamic.
Otherwise, dialysis continues, and continues to be taxing physically and emotionally. It has been more tolerable recently as friends have joined me and hung out for a number of sessions. It is a really good way to catch up with people and pass the time. Again, I am very thankful that dialysis exists and that I have such a comfortable set-up, but it wears on you over time. It is just always there. There is no vacation from dialysis. My parents have been doing an amazing job of helping out with all the set-up, putting me on, feeding and keeping me warm during the sessions, taking me off, and cleaning up, but it is still just emotionally wearing. It is hard for me to need to be helped so often. I liked my old self image of being very independent and self-reliant. I tend to resent the situation and then you get grumpy Tyler. Not very pleasant. Sometimes the biting remarks just come out without me even thinking to close my mouth in time. I apologize if you are ever on the receiving end of one. Usually, though, they are reserved for family. Eva does a good job of balancing me out and often stops me in my tracks with remarks of her own. Like a good punch to the nose, I usually stop, shake my head a bit, and then smile as I find myself in a new, sunnier mood.
I have not been too active, but I did manage to get out of town for a few days before Christmas. While Eva was visiting her folks in Switzerland, my folks and I went up to Orcas Island to visit my Uncle Jerry and Aunt Mary. Orcas is up in the San Juans, right on the border with Canada, near Victoria. They have a beautiful house though it is a little out of the way but well worth the trip as it was really great spending some time with my aunt and uncle. It was a little chilly, so we spent most of our time indoors catching up or eating and catching up. My kind of trip these days. One evening, we drove up to the top of Mt. Constitution and enjoyed a pretty fabulous view though it did take quite a while for me to drag my sorry ass up all the stairs in the tower at the top. Throughout the few days, there were some pretty good stories about small town island life. I maybe romanticizing it a bit, but I really like the idea of small town living. I loved the summer I spent in Petersburg, Alaska. They often have such character. Eva’s little town in Switzerland is pretty cool, too. Don’t get me wrong, I really enjoy city life, but I could see myself living in some po-dunk little town somewhere (well, I guess not now, as I do require quite extensive medical facilities, oh-well).
Eva as been doing well and has really been enjoying her MBA program at Pepperdine. She had a great first semester and is just starting the second. It can be very stressful at times, but she handles it very well (with a little encouragement sometimes). The folks are doing well, too. Both are pretty active and get out and about quite often (much more than me but that is not really saying all that much). Sadly, my Uncle Tim, Aunt Robbie’s husband, recently passed. I did not really know him very well but the loss will certainly be felt by the entire family and my heartfelt condolences go out to my aunt. I attended his memorial service yesterday and, though it is always sad when someone passes, the service was a very nice celebration of his life and it was really good to see so much family.
Again, I wish everyone happiness and success in this coming year.
Carpe Vitam and Live Strong,
Tyler
As usual, there have been some ups and downs, though things seem to be going pretty well, health-wise, these days (knock on wood). I had a pretty decent scan in November and my marker has been fairly low recently, so we are holding off on chemo for the time being. I have actually been off for a good 8 weeks or so. I am actually feeling pretty well right now. The flip side is that my body, at this point, has pretty much been beat to crap and I am not really sure how much more chemo I can handle. The few months before we stopped, I got a lot of drugs without many breaks. Pretty much every week since the end of summer and I think we may have hit a bit of a tipping point here and there in my body. The peripheral neropathy is pretty bad as I really cannot feel my feet nor much on the very surface of my skin up my legs to around my calves. Without the sensory nerves in my feet and toes, standing becomes a little tricky sometimes.The motor nerves have also been damaged and the associated muscles have wasted away, especially my shins. It is basically impossible for me to raise my right foot or point my toe up. My left foot is affected, too, but there is still a bit of movement there. This all results in me walking very slowly and very hilariously. I tend to march, so as to bring my foot up high enough for my toe to clear the floor and then slap, because I don’t set my foot down heel, toe, more like all at once. I think it sort of looks like a high stepping duck. I am also painfully slow. It is often a race against the clock when I cross larger streets. I barely made it across Sunset the other day, whew, pretty stressful, too. Luckily, I have started physical therapy and, though progress is slow, I have noticed a difference after the first 3 weeks. My therapist gives me a really good workout every session which greatly pleases Eva. Somehow, I still have trouble with food. I have a hard time finding food I like and then often have a bit of pain and discomfort digesting and expelling it. I have managed to put on about 10 pounds, but it is hard keeping it on. One exciting moment was when, about two weeks ago, hair started coming in. It was awesome, little sprouts on my head, my mustache (well my pathetic teenage dirt-on-lip mustache), my legs, my arms (barely), and a few on my chin. My chest and armpits remain hairless about which I have mixed feelings. Right now it looks like I have a buzz cut. The really great part is that I now have eyebrows and eyelashes. What a difference that makes. Before, I looked like a super aerodynamic alien egg. Now, fairly human, though, I will admit, markedly less aerodynamic.
Otherwise, dialysis continues, and continues to be taxing physically and emotionally. It has been more tolerable recently as friends have joined me and hung out for a number of sessions. It is a really good way to catch up with people and pass the time. Again, I am very thankful that dialysis exists and that I have such a comfortable set-up, but it wears on you over time. It is just always there. There is no vacation from dialysis. My parents have been doing an amazing job of helping out with all the set-up, putting me on, feeding and keeping me warm during the sessions, taking me off, and cleaning up, but it is still just emotionally wearing. It is hard for me to need to be helped so often. I liked my old self image of being very independent and self-reliant. I tend to resent the situation and then you get grumpy Tyler. Not very pleasant. Sometimes the biting remarks just come out without me even thinking to close my mouth in time. I apologize if you are ever on the receiving end of one. Usually, though, they are reserved for family. Eva does a good job of balancing me out and often stops me in my tracks with remarks of her own. Like a good punch to the nose, I usually stop, shake my head a bit, and then smile as I find myself in a new, sunnier mood.
I have not been too active, but I did manage to get out of town for a few days before Christmas. While Eva was visiting her folks in Switzerland, my folks and I went up to Orcas Island to visit my Uncle Jerry and Aunt Mary. Orcas is up in the San Juans, right on the border with Canada, near Victoria. They have a beautiful house though it is a little out of the way but well worth the trip as it was really great spending some time with my aunt and uncle. It was a little chilly, so we spent most of our time indoors catching up or eating and catching up. My kind of trip these days. One evening, we drove up to the top of Mt. Constitution and enjoyed a pretty fabulous view though it did take quite a while for me to drag my sorry ass up all the stairs in the tower at the top. Throughout the few days, there were some pretty good stories about small town island life. I maybe romanticizing it a bit, but I really like the idea of small town living. I loved the summer I spent in Petersburg, Alaska. They often have such character. Eva’s little town in Switzerland is pretty cool, too. Don’t get me wrong, I really enjoy city life, but I could see myself living in some po-dunk little town somewhere (well, I guess not now, as I do require quite extensive medical facilities, oh-well).
Eva as been doing well and has really been enjoying her MBA program at Pepperdine. She had a great first semester and is just starting the second. It can be very stressful at times, but she handles it very well (with a little encouragement sometimes). The folks are doing well, too. Both are pretty active and get out and about quite often (much more than me but that is not really saying all that much). Sadly, my Uncle Tim, Aunt Robbie’s husband, recently passed. I did not really know him very well but the loss will certainly be felt by the entire family and my heartfelt condolences go out to my aunt. I attended his memorial service yesterday and, though it is always sad when someone passes, the service was a very nice celebration of his life and it was really good to see so much family.
Again, I wish everyone happiness and success in this coming year.
Carpe Vitam and Live Strong,
Tyler
Thursday, October 29, 2009
5K Champs again! Great People, Great Day!
Whew. What a day! The LA Cancer Challenge was last Sunday and it was a great day. In fact, I was thinking about it, and Sunday was probably one of my favorite days in a long, long time.
Thank you all so much!
Thank you to all of the wonderful people who came out and ran and donated so much time, energy, and money to a very worthy cause (ok, I may be a little biased). Thank you to those of you who showed their support from afar (You rock Aunt Zel, Breakfast buddies Ray and Bob, Uncle Bob, and Aunt Gloria, and the many others who gave but could not join us for the race).
All of your generosity was truly touching, especially with everything that has been going on financially over the last year. If you ever need any rationalizations, I have plenty so try this one on for size...with stocks being incredibly volatile, bonds likely to lose value if interest rates ever go up, housing being, well, housing, and T-bills yielding close to 0%, cancer research may be the best investment you could ever make. Think about it, regardless of how much or little you give today, there is a one in three chance you will get some form of cancer during your lifetime. I know that I would pay pretty much any amount for a cure for my cancer. Hopefully you never have to face a cancer diagnosis, but if you do, hope that it happens later rather than sooner. By that time, your dollars donated today may have contributed to a cure, which you will probably be able to afford (Go public option!). So your donation today would have matured into a treatment that could have infinite value to you. Hmmm, infinite, now that is a good return.
Threepeat!! We continued our streak and won our third 5K team title in a row. Props go out to Ross C.(for finally figuring out how to get onto team Tyler and taking 2nd place overall), to Daniel D. (always a powerful presence on the course), to Shannon R. (for being the first woman and 5th overall, getting Nike to provide some awesome jerseys, and letting all of us couch potatoes bringing up the rear say that we were on the same team as a World’s medalist and Olympian), Nate B. (for taking 9th and bringing out a great group of young runners from the Home of Scholars and Champions), and Andrew G. (for showing us that you can bounce back from something as severe as a collapsed lung in college and still take 10th in what is becoming a fairly competitive 5K, Maybe there is a chance that my body will eventually recover). Honorable mentions go out to Dan S., Mike F., Greg J., Alex G., and Mark C. for all going under 20 minutes and Effort awards go to John C. and Chris C. for representing the OG Choad and just completing the race. I did manage to drag my sorry butt around the course in 1 hour 26 minutes and 1 second (yes, that was for the 5K) and was emotionally broken as the kids fun run started right as I was finishing and a herd of children dominated me in the final 100m. By the time I crossed the finish line, I think they had stopped handing out medals (I forgot to pick up my number anyways) and was a little bummed. Luckily, my wonderful wife saw my disappointed look, gave me her medal, and saved us all from a big kid tantrum amidst the young well-behaved finishers.
The 10K team did great as well. Props to Dad, Becky S., Karen B., Marty L., Eva and Mom, though I think we may need to make some adjustments to be a little more competitive next year. It is really pretty straight forward. I am just going to need each of you to train a bit over the next year, and, if everyone can take, say 11 minutes, off their time, we should be in contention to win the 10K team title as well. You might want to start training now.
All in all, the race was a great opportunity to catch up with a lot of different people and I really enjoyed the time I got to spend with so many of you. I am trying to de-hermitize myself a bit and hope to see as many of you as I can before next year. Txts are probably the best way to reach me and please, be persistent. I often go days without checking my email or voicemail. Sometimes just getting to the couch is all I can manage. Other days I am pretty much unstoppable (or at least I think I am).
After the race, the contingent of x-Cal runners and associates went over to Ross’ parent’s house for lunch. They have a wonderfully pleasant backyard where we continued to tell old stories and new ones over crepes. Thank you for hosting a great little get together.
As if all that activity was not enough, Eva and I had tickets to a live taping of one of my favorite radio shows that evening- NPR’s Left, Right, and Center. There was a cocktail hour and then Robert Sheer, Matt Miller, Ariana Huffington, and Tony Blankley took the stage and did a special 45 minute show in front of a live audience. The “stars” mingled during the cocktail hour and a bit after the show where Eva and I actually got to meet Matt Miller. I usually do not go ga-ga over famous people but, as a testament to my nerdiness, I was a bit start-struck by Mr. Miller. He has laid out a very logical progressive agenda on which I agree with many of his ideas. I managed to utter that I had read his two books and he replied that I was amongst a select few. Then Eva mentioned that the Swiss model (which he often touts as a possible model for American health care reform) is still very expensive and might not be the answer we are looking for and he thought about it a minute and mentioned that he liked Tony’s comment during the show that the Swiss model works in Switzerland because its run and used by the Swiss. We got a quick picture and then left and I was just on cloud nine. What a day. So many wonderful people and moments that I will treasure for a very long time.
Exhausted, we made our way home, got a bit of food, and I slept for the next 17 hours, woke up, dialyzed, then went to bed again. On Wednesday, I started to feel sort of ok. Sunday certainly took a toll but was totally worth it.
Take Care and Carpe Vitam,
Tyler
Here is Team Tyler at the start. Or rather, the walking contingent of Team Tyler. Full of energy and ready to go.
Here we are a little later in the race. A bit less energy but we are still going. I kept telling myself, "Right foot, left foot, Repeat"
The Poly boys and girls that came out to the race. You know, next to the petite Shannon, my arms don't look quite so thin. Too bad she could probably dominate me in an arm wrestling competition.
Nate and Becky and me. Nate and I ran together during my glory days and Becky is his lovely wife. He now coaches the Poly girls XC team (he is the new Joe Carlson).
Eva and I with Matt Miller. If you are looking for a couple good reads, check out The 2% Solution or The Tyranny of Dead Ideas. Progressive ideas laid out in ways that both liberals and conservatives should love.
Thank you all so much!
Thank you to all of the wonderful people who came out and ran and donated so much time, energy, and money to a very worthy cause (ok, I may be a little biased). Thank you to those of you who showed their support from afar (You rock Aunt Zel, Breakfast buddies Ray and Bob, Uncle Bob, and Aunt Gloria, and the many others who gave but could not join us for the race).
All of your generosity was truly touching, especially with everything that has been going on financially over the last year. If you ever need any rationalizations, I have plenty so try this one on for size...with stocks being incredibly volatile, bonds likely to lose value if interest rates ever go up, housing being, well, housing, and T-bills yielding close to 0%, cancer research may be the best investment you could ever make. Think about it, regardless of how much or little you give today, there is a one in three chance you will get some form of cancer during your lifetime. I know that I would pay pretty much any amount for a cure for my cancer. Hopefully you never have to face a cancer diagnosis, but if you do, hope that it happens later rather than sooner. By that time, your dollars donated today may have contributed to a cure, which you will probably be able to afford (Go public option!). So your donation today would have matured into a treatment that could have infinite value to you. Hmmm, infinite, now that is a good return.
Threepeat!! We continued our streak and won our third 5K team title in a row. Props go out to Ross C.(for finally figuring out how to get onto team Tyler and taking 2nd place overall), to Daniel D. (always a powerful presence on the course), to Shannon R. (for being the first woman and 5th overall, getting Nike to provide some awesome jerseys, and letting all of us couch potatoes bringing up the rear say that we were on the same team as a World’s medalist and Olympian), Nate B. (for taking 9th and bringing out a great group of young runners from the Home of Scholars and Champions), and Andrew G. (for showing us that you can bounce back from something as severe as a collapsed lung in college and still take 10th in what is becoming a fairly competitive 5K, Maybe there is a chance that my body will eventually recover). Honorable mentions go out to Dan S., Mike F., Greg J., Alex G., and Mark C. for all going under 20 minutes and Effort awards go to John C. and Chris C. for representing the OG Choad and just completing the race. I did manage to drag my sorry butt around the course in 1 hour 26 minutes and 1 second (yes, that was for the 5K) and was emotionally broken as the kids fun run started right as I was finishing and a herd of children dominated me in the final 100m. By the time I crossed the finish line, I think they had stopped handing out medals (I forgot to pick up my number anyways) and was a little bummed. Luckily, my wonderful wife saw my disappointed look, gave me her medal, and saved us all from a big kid tantrum amidst the young well-behaved finishers.
The 10K team did great as well. Props to Dad, Becky S., Karen B., Marty L., Eva and Mom, though I think we may need to make some adjustments to be a little more competitive next year. It is really pretty straight forward. I am just going to need each of you to train a bit over the next year, and, if everyone can take, say 11 minutes, off their time, we should be in contention to win the 10K team title as well. You might want to start training now.
All in all, the race was a great opportunity to catch up with a lot of different people and I really enjoyed the time I got to spend with so many of you. I am trying to de-hermitize myself a bit and hope to see as many of you as I can before next year. Txts are probably the best way to reach me and please, be persistent. I often go days without checking my email or voicemail. Sometimes just getting to the couch is all I can manage. Other days I am pretty much unstoppable (or at least I think I am).
After the race, the contingent of x-Cal runners and associates went over to Ross’ parent’s house for lunch. They have a wonderfully pleasant backyard where we continued to tell old stories and new ones over crepes. Thank you for hosting a great little get together.
As if all that activity was not enough, Eva and I had tickets to a live taping of one of my favorite radio shows that evening- NPR’s Left, Right, and Center. There was a cocktail hour and then Robert Sheer, Matt Miller, Ariana Huffington, and Tony Blankley took the stage and did a special 45 minute show in front of a live audience. The “stars” mingled during the cocktail hour and a bit after the show where Eva and I actually got to meet Matt Miller. I usually do not go ga-ga over famous people but, as a testament to my nerdiness, I was a bit start-struck by Mr. Miller. He has laid out a very logical progressive agenda on which I agree with many of his ideas. I managed to utter that I had read his two books and he replied that I was amongst a select few. Then Eva mentioned that the Swiss model (which he often touts as a possible model for American health care reform) is still very expensive and might not be the answer we are looking for and he thought about it a minute and mentioned that he liked Tony’s comment during the show that the Swiss model works in Switzerland because its run and used by the Swiss. We got a quick picture and then left and I was just on cloud nine. What a day. So many wonderful people and moments that I will treasure for a very long time.
Exhausted, we made our way home, got a bit of food, and I slept for the next 17 hours, woke up, dialyzed, then went to bed again. On Wednesday, I started to feel sort of ok. Sunday certainly took a toll but was totally worth it.
Take Care and Carpe Vitam,
Tyler
Here is Team Tyler at the start. Or rather, the walking contingent of Team Tyler. Full of energy and ready to go.
Here we are a little later in the race. A bit less energy but we are still going. I kept telling myself, "Right foot, left foot, Repeat"
The Poly boys and girls that came out to the race. You know, next to the petite Shannon, my arms don't look quite so thin. Too bad she could probably dominate me in an arm wrestling competition.
Nate and Becky and me. Nate and I ran together during my glory days and Becky is his lovely wife. He now coaches the Poly girls XC team (he is the new Joe Carlson).
Eva and I with Matt Miller. If you are looking for a couple good reads, check out The 2% Solution or The Tyranny of Dead Ideas. Progressive ideas laid out in ways that both liberals and conservatives should love.
Monday, October 05, 2009
LA Cancer Challenge Oct. 25th!
Wow, well, what can I say? All of the amazing people who left comments and wrote such wonderful words truly touched me. Thank you, from the bottom of my heart, for each and every one of you. I really felt cared for, and those feelings are good medicine. Good for the soul, good for the fight. Again, I am sorry that I go a bit of time before updates. Tiana mentioned that people on facebook ask her about me, but I just figured that she was just trying to make me feel good. I know I should be better about updating, and the response after the last blog was immensely motivating. I think my aunt Betty took the prize for the fastest posting of a comment, a mere 30 minutes or so after I posted (on a Saturday night, no less. Betty, you and I have got to get out more). Again, thank you so much for your kind words. I am still doing very well and I think that every one of you have played a part in that. I may not see many of you very much, if at all these days, but there has got to be some sort of mental/spiritual thing going on (which is a pretty hard thing for an engineer to say).
Anyways, a quick health update. As I said before, I am still doing very well. I am a little light and my legs barely have the strength to get me around, but I still manage to get around, sort of. Dialysis still sucks but is tolerable and if you really press me I will admit that I am really thankful for it (though there are days when I don’t really think I need it but I suspect that I am being kept on because that is how the system works (this is on my more paranoid days and in actuality, I probably would not last long off the machine)). Wow, I was sort of all over the place there. My appetite is doing well (when it gets helped) though I could certainly be eating more. And of course there are a few other little issues, aches, and pains.
Now, onto the more important stuff. First of all, the LA Cancer Challenge 5K/10K is coming up in just a few weeks, Sunday morning, October 25th. The 10K starts at 7:30am (yikes!) and the 5K starts at 9am (a bit more reasonable). I will probably be there to cheer on the 10K runners and walkers, but I will be attempting the 5K myself. Lets see, if the race starts at 9am, I will probably be finishing around, hmmm, 10:30, 11, hopefully before noon. Last year, it took me 1 hour and 14 minutes. If I am still out on the course, someone save me some pancakes. Please go to my team page to join our team.
Link to the Team page. Please scroll down and click on "Team Tyler".
We have had the best overall 5K team time two years running, and it would mean a lot to me if me kept that streak going. Who knows what will happen this year, but it is looking like Shannon Rowbury (who ran the 1500m for the US at the 2008 Beijing Olympics) will again be leading our team. Just think, you can tell your neighbors, friends, and grandchildren that you ran alongside an olympian. She is really pleasant, too. She may even talk to you (that, by the way, is the only requirement for my father to like you). We all had a lot of fun last year and it is a really good opportunity to catch up with people I do not see all that often. So I hope to see you there. I apologize for the race’s website. If you can successfully navigate through it, I applaud you. Don’t worry about setting up your own website and doing you own fundraising. Just go through the motions, it has been a rough year, financially, for all of us.
As far as keeping busy, most of my time is spent dialyzing, getting chemo, or recovering from chemo, but I have managed to get out of town a few times over the last few weeks. I just got back from a trip to Portland to visit some family and see my great aunt on her 95th birthday. She looks great and is just as feisty as I remember her. I think I may have more in common with her, these days, than anyone else in the family. We walk at about the same speed, don’t really handle stairs all that well, take a while to get up out of chairs, are fairly particular about our foods, and occasionally speak our minds a bit more than maybe we should. Well, I guess Zel can say whatever she wants, whenever she wants, but I suppose I should maybe hold my tongue from time to time. I spent the majority of my time with Zel, but was also really happy to see my other family members in the area like Tom and Birken, Betty and David, and Jerry, who drove down from Washington. Everyone looked to be doing very well and I was really pleased having that much family together. I know that Grandma would be happy that her boys saw each other and that just put a smile on my face. Zel had quite a birthday filled with eating, eating. and more, you guessed it, eating. There was a bit of visiting during and between meals, but the main focus of the day was food. This was turning out to be a pretty good trip for me, once I medicated. Special props go to Birken and Jerry who came from pretty good distances by different combinations of boat, bus, or truck. Birken is just starting his sophomore year at Evergreen and is looking like quite the professional college student. This suits you much better than disheveled high school student. Well done, sir. Another highlight of the trip was Zel’s friends. They are hilarious and we really enjoyed our breakfasts with them. Can you believe that one of her friends lived in a house near Santa Fe, New Mexico, built in 1980, that was entirely climate controlled using passive solar energy. It was built into a hillside so that three walls were insulated by earth and then the south wall was all windows. On summer days, they would close the blinds. The rest of the year, the sun warmed the house nicely. I asked if she was comfortable, and she said she wore shorts and sandals every day of the year. It can be done people. It is about time we start implementing these considerations a bit more often when building. The flights went smoothly, the old folks home was very hospitable, the family and friends were warm and welcoming, all in all, it was a great few days. Even the weather was pretty nice, though I heard it was gorgeous the week before we got there (I think we heard that the last time we were in Portland, too).
The other two trips were a weekend in the bay area and a weekend in Tahoe. The first was mainly to see Tom as he has now moved to England and it was good catching up with him, his brother, father, and friends and also to see Chris and Katie and Vincinzo (their 2 month old). I got to spend even more time with the Coffees the next weekend which I spent with them in their family’s cabin in Tahoe. Both weekends were amazing and it was really good for me to spend some quality time with good friends. Hanging out with the Coffees was pretty amazing. In about 15 months, Chris went from being single (not really) with no attachments to him and Katie owning a house, getting married, having an adorable baby boy, and getting a dog. Wow, that is some fast domestication. Impressive. I have never spent that much time with a child that young though I think I made progress over the weekend. At first, I was pretty nervous even just holding Cinzo, but by day 3, I had held confidently, fed, burped, and changed him(with a tiny bit of poop) and even had gotten him to smile (no small feat for this kid). It felt pretty good and I was so thankful for Chris and Katie to be so comfortable with their child and me. Maybe I am some relation to my grandmother.
Anyways, the rest of the family is doing well. Eva is diving into her MBA, meeting great people and learning fascinating things. My parents are doing well. Dad is still playing soccer. Mom is running a bit more. Both are doing a great job at taking care of me. Eva’s parents just got back from a cruise through Scotland that sounded amazing. I love castles, and abbeys, and Scots. Well, I hope to write before then but if I don’t, I hope to see you at the LA Cancer Challenge. Remember to bring your “A” game.
Take Care and Live Strong,
Tyler
Anyways, a quick health update. As I said before, I am still doing very well. I am a little light and my legs barely have the strength to get me around, but I still manage to get around, sort of. Dialysis still sucks but is tolerable and if you really press me I will admit that I am really thankful for it (though there are days when I don’t really think I need it but I suspect that I am being kept on because that is how the system works (this is on my more paranoid days and in actuality, I probably would not last long off the machine)). Wow, I was sort of all over the place there. My appetite is doing well (when it gets helped) though I could certainly be eating more. And of course there are a few other little issues, aches, and pains.
Now, onto the more important stuff. First of all, the LA Cancer Challenge 5K/10K is coming up in just a few weeks, Sunday morning, October 25th. The 10K starts at 7:30am (yikes!) and the 5K starts at 9am (a bit more reasonable). I will probably be there to cheer on the 10K runners and walkers, but I will be attempting the 5K myself. Lets see, if the race starts at 9am, I will probably be finishing around, hmmm, 10:30, 11, hopefully before noon. Last year, it took me 1 hour and 14 minutes. If I am still out on the course, someone save me some pancakes. Please go to my team page to join our team.
Link to the Team page. Please scroll down and click on "Team Tyler".
We have had the best overall 5K team time two years running, and it would mean a lot to me if me kept that streak going. Who knows what will happen this year, but it is looking like Shannon Rowbury (who ran the 1500m for the US at the 2008 Beijing Olympics) will again be leading our team. Just think, you can tell your neighbors, friends, and grandchildren that you ran alongside an olympian. She is really pleasant, too. She may even talk to you (that, by the way, is the only requirement for my father to like you). We all had a lot of fun last year and it is a really good opportunity to catch up with people I do not see all that often. So I hope to see you there. I apologize for the race’s website. If you can successfully navigate through it, I applaud you. Don’t worry about setting up your own website and doing you own fundraising. Just go through the motions, it has been a rough year, financially, for all of us.
As far as keeping busy, most of my time is spent dialyzing, getting chemo, or recovering from chemo, but I have managed to get out of town a few times over the last few weeks. I just got back from a trip to Portland to visit some family and see my great aunt on her 95th birthday. She looks great and is just as feisty as I remember her. I think I may have more in common with her, these days, than anyone else in the family. We walk at about the same speed, don’t really handle stairs all that well, take a while to get up out of chairs, are fairly particular about our foods, and occasionally speak our minds a bit more than maybe we should. Well, I guess Zel can say whatever she wants, whenever she wants, but I suppose I should maybe hold my tongue from time to time. I spent the majority of my time with Zel, but was also really happy to see my other family members in the area like Tom and Birken, Betty and David, and Jerry, who drove down from Washington. Everyone looked to be doing very well and I was really pleased having that much family together. I know that Grandma would be happy that her boys saw each other and that just put a smile on my face. Zel had quite a birthday filled with eating, eating. and more, you guessed it, eating. There was a bit of visiting during and between meals, but the main focus of the day was food. This was turning out to be a pretty good trip for me, once I medicated. Special props go to Birken and Jerry who came from pretty good distances by different combinations of boat, bus, or truck. Birken is just starting his sophomore year at Evergreen and is looking like quite the professional college student. This suits you much better than disheveled high school student. Well done, sir. Another highlight of the trip was Zel’s friends. They are hilarious and we really enjoyed our breakfasts with them. Can you believe that one of her friends lived in a house near Santa Fe, New Mexico, built in 1980, that was entirely climate controlled using passive solar energy. It was built into a hillside so that three walls were insulated by earth and then the south wall was all windows. On summer days, they would close the blinds. The rest of the year, the sun warmed the house nicely. I asked if she was comfortable, and she said she wore shorts and sandals every day of the year. It can be done people. It is about time we start implementing these considerations a bit more often when building. The flights went smoothly, the old folks home was very hospitable, the family and friends were warm and welcoming, all in all, it was a great few days. Even the weather was pretty nice, though I heard it was gorgeous the week before we got there (I think we heard that the last time we were in Portland, too).
The other two trips were a weekend in the bay area and a weekend in Tahoe. The first was mainly to see Tom as he has now moved to England and it was good catching up with him, his brother, father, and friends and also to see Chris and Katie and Vincinzo (their 2 month old). I got to spend even more time with the Coffees the next weekend which I spent with them in their family’s cabin in Tahoe. Both weekends were amazing and it was really good for me to spend some quality time with good friends. Hanging out with the Coffees was pretty amazing. In about 15 months, Chris went from being single (not really) with no attachments to him and Katie owning a house, getting married, having an adorable baby boy, and getting a dog. Wow, that is some fast domestication. Impressive. I have never spent that much time with a child that young though I think I made progress over the weekend. At first, I was pretty nervous even just holding Cinzo, but by day 3, I had held confidently, fed, burped, and changed him(with a tiny bit of poop) and even had gotten him to smile (no small feat for this kid). It felt pretty good and I was so thankful for Chris and Katie to be so comfortable with their child and me. Maybe I am some relation to my grandmother.
Anyways, the rest of the family is doing well. Eva is diving into her MBA, meeting great people and learning fascinating things. My parents are doing well. Dad is still playing soccer. Mom is running a bit more. Both are doing a great job at taking care of me. Eva’s parents just got back from a cruise through Scotland that sounded amazing. I love castles, and abbeys, and Scots. Well, I hope to write before then but if I don’t, I hope to see you at the LA Cancer Challenge. Remember to bring your “A” game.
Take Care and Live Strong,
Tyler
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