Wow. What a day. Thank you so much to everyone who came out and walked or ran and also to those who gave so generously. It was a really fun day. I am really sorry for those of you who did not get a goodie bag. There were a couple instances where the race could have prepared much better. I am not sure if they were expecting the economic downturn to effect turnout or what, but the community came out in force for Pancreatic Cancer Research. There were over 3000 runners this year. Now it is not quite the 60,000 runners that the Revlon Breast Cancer run gets, but it is a really good turn out for a pancreatic cancer run. Thank you all so much for also surviving their convoluted web donation system. Honestly, I see a lot of room for improvement. I understand that they want to make everyone a fundraiser and give everyone their own fundraising page, but really, some people just want to give and be done with it and that is perfectly all right. We did so well as a team. I am so proud of everyone’s performance. On the fundraising side, we raised an amazing $4,040.00! That was 300% over our goal. Again, incredible generosity. We had 46 people join Team Tyler. I will never be able to communicate how much your support means to me and how much it has helped me fight this disease. Now, I have no idea how they figure out the team standings, but it looks like they took into account both races, and even though we were heavily stacked in the 5K and were overly relying on my father in the 10K, we managed to win the team title by over 3 minutes. It looks like we did this for the second year without Ross’ (the second place finisher) help as some how he just can not get it together to actually join team Tyler. Next year I may have to sign him up myself. Our team did benefit incredibly from Shannon Rowbury and her friend Dan demartini (cool last name). He won the race and she was 4th place overall and the first woman and totally whooped John Burke. I guess those Olympic athletes are legit. Also, another great perk was that, even if you walked the 5K in an abysmal 1:14:20 (yes 1 hour, 14 minutes, and 20 seconds), you can say that on October 26th, I was on a team with an Olympic athlete. We may not all get to the Olympics (except maybe to watch), but at least we will have that.
I really enjoyed the walk this year as a number of people on the team all walked together and chit chatted during the race. It was really great to catch up with so many of you and it sounds like everyone is doing really well. Nate Bershtel, a former teammate from my LB Poly XC days and the current girls XC coach at LB Poly, brought out a number of runners who all walked with me. I don’t want to be a dirty old man or anything, but it is pretty nice to have a dozen or so high school girls around.
One exciting moment during the morning came when my father spotted Harrison Ford. He of course could not just leave him be, so he ran and grabbed a Team Tyler t-shirt and ran over to Harrison and gave it to him. He did not put it on but we did see it hanging out from his belt a little later that morning. About a half hour later we saw him going into a porto-potty (I know, he wipes his own a**!) and we were going to confront him after he finished and walked out to insure that the t-shirt was not soiled. Unfortunately, we got distracted and never saw him leave the porto-potty. You may have escaped this time Han Solo, but I will watch you next time. In case you were wondering, his kid did the little kid’s run. I was thinking about hopping in, but I don’t think I could handle the emotional devastation of being beaten by 100 seven-year-olds (their quick little guys and girls).
Once again, thank you all so much for your support.
Take Care and Live Strong,
Tyler
Monday, October 27, 2008
Saturday, October 25, 2008
Race Tomorrow
Sorry that this is a little late, but oh-well. The LA Cancer Challenge is coming up this Sunday. I am really looking forward to seeing so many of you there. I hope everyone is in shape and we can make a good showing. It is looking like we may be rounding out our team with an Olympian, so hopefully that will give us an edge. The race details are at www.lacancerchallenge.com. The 10K starts at 7:30am, the 5K starts at 9am, and both races are on the Veteran’s grounds next to UCLA. Parking should be available but may be a little ways away from the starting line, so give yourself plenty of time. We will meet and distribute t-shirts somewhere near the team canopies/tents. Just look for a lot of people with Team Tyler t-shirts. Thank you all so much for your incredible generosity and support. You all do more for my disposition and motivation to fight than you will ever know.
Thank you so much to Debbie Cook and Dr. Geisse for your very kind comments. Both of you are very special people and I feel so fortunate to have met and known both of you. Again, if you live in the 46th district, I am sure Debbie Cook would make a great congresswoman and she certainly gets my wholehearted endorsement (not that it is worth much, but she still gets it).
As far as my health for the week, it has been up and down a bit but generally ok. I was scheduled for chemo on Friday morning, but I woke up with a fair amount of back pain and we decided to hold off for a week. Over the last six weeks, I usually feel crappy on the day of an infusion, then really crappy for the 3-5 days after an infusion, then it slowly gets better and for maybe the 3 days before my next infusion, I feel fairly normal. That has been the “regular” 2-week cycle for the last few sessions. This last cycle, though, I just never really got to that semi-normal feeling. I was still feeling fairly crappy the day before the infusion. Add that to some back pain, and you have got a day where adding chemo probably is not going to do a whole lot of good. I always hate to miss a session, for fear that the cancer might gather a bit of strength, but I think that my body needed a bit of a break. Like Eva says, it is no good if you beat the cancer but the treatment has taken out all of your other systems, too. Another perk, is that I will have no pump for the cancer challenge. It would have been very dramatic, but I think I have a better chance of completing the 5k without it. Just to let people know, we may have to take breaks. Plan on chitchatting a bit with the water station volunteers. Maybe try to come up with a few good jokes to brighten their days.
So I have had to take some painkillers just to feel fairly normal over the last couple weeks. Eva was initially a bit worried as se is a caring wife, but after seeing me in pain for a few hours, she understood how important they are. In fact, a few hours after “perking up” a bit post popping a couple pills, she actually said I seem even more like my old self than when I am not taking anything. I would like to not have to take anything, but I am intimately familiar with how pain can take away your will to fight and destroy your resolve. I consider myself pretty tough, but when I am in significant pain, it is just so hard to stay motivated.
Anyways, I am really looking forward to seeing all of you tomorrow. Get a good night’s sleep and get psyched up for the run.
Take Care and Live Strong,
Tyler
Thank you so much to Debbie Cook and Dr. Geisse for your very kind comments. Both of you are very special people and I feel so fortunate to have met and known both of you. Again, if you live in the 46th district, I am sure Debbie Cook would make a great congresswoman and she certainly gets my wholehearted endorsement (not that it is worth much, but she still gets it).
As far as my health for the week, it has been up and down a bit but generally ok. I was scheduled for chemo on Friday morning, but I woke up with a fair amount of back pain and we decided to hold off for a week. Over the last six weeks, I usually feel crappy on the day of an infusion, then really crappy for the 3-5 days after an infusion, then it slowly gets better and for maybe the 3 days before my next infusion, I feel fairly normal. That has been the “regular” 2-week cycle for the last few sessions. This last cycle, though, I just never really got to that semi-normal feeling. I was still feeling fairly crappy the day before the infusion. Add that to some back pain, and you have got a day where adding chemo probably is not going to do a whole lot of good. I always hate to miss a session, for fear that the cancer might gather a bit of strength, but I think that my body needed a bit of a break. Like Eva says, it is no good if you beat the cancer but the treatment has taken out all of your other systems, too. Another perk, is that I will have no pump for the cancer challenge. It would have been very dramatic, but I think I have a better chance of completing the 5k without it. Just to let people know, we may have to take breaks. Plan on chitchatting a bit with the water station volunteers. Maybe try to come up with a few good jokes to brighten their days.
So I have had to take some painkillers just to feel fairly normal over the last couple weeks. Eva was initially a bit worried as se is a caring wife, but after seeing me in pain for a few hours, she understood how important they are. In fact, a few hours after “perking up” a bit post popping a couple pills, she actually said I seem even more like my old self than when I am not taking anything. I would like to not have to take anything, but I am intimately familiar with how pain can take away your will to fight and destroy your resolve. I consider myself pretty tough, but when I am in significant pain, it is just so hard to stay motivated.
Anyways, I am really looking forward to seeing all of you tomorrow. Get a good night’s sleep and get psyched up for the run.
Take Care and Live Strong,
Tyler
Sunday, October 19, 2008
Political Rant
Well it seems like everyone has a political opinion to share these days and Eva and I certainly have ours. Now this may come off as a little self-centered, but I figure that is one of the privileges of having a blog- sort of what it is all about. Blogs are not exactly beacons of humility. Anyways, I apologize if it comes off as fairly self-serving. I am also sorry for the lack of photos and the length. There is a local endorsement towards the end. Is that enticing? Hopefully.
What an amazing time that we are living through. Of my few years, this just feels like the most historic time that I have ever lived consciously. Either way that the presidential election goes, it will be historic. We have not seen stock market gyrations like this since the thirties. A Republican has just authored and approved one of the most socialist moves in our nation’s history. Again, what an amazing time. Something that really strikes me is that the citizenry is more informed than I have ever seen. I hear Obama’s and McCain’s names in conversations between people on the street, in restaurants, and in almost every other public place I might frequent. It seems like more people have an opinion one-way or another now and it is very rare to meet someone who is either oblivious to what is going on or apathetic. Don’t get me wrong, these people are still out there but it seems like their numbers have dwindled and even if you are tired of the 24 hr news channel’s minute by minute election coverage, your probably are leaning one way or another.
One big factor, which really seems to bring home this election more than the ones before it, is that it actually seems like this election matters. That real people will be directly affected by its outcome. With this consideration, I would like to mention the factors that will directly affect my life and urge you to consider them when you vote. In the interest of full disclosure, I consider myself very liberal but definitely open minded towards conservative ideas. I would hope that I weigh both sides evenly though I know that we all have a strong disposition towards seeking out views that confirm our own philosophies. One of my favorite books on the subject is Matt Miller’s 2% solution which proposes achieving a number of liberal goals using conservative means and visa-versa. Very progressive and it seems like while we are overhauling some of these institutions maybe we should look at doing it in a methodical, thoughtful way, so that we do not end up here again.
Anyways, as this blog has primarily concerned itself with my health, the issue that will affect me most is health care. There are distinct differences between the candidates that will impact my life in a very real way.
1.Pre-existing conditions. Under our current system I am basically a leper as viewed by the health insurance companies. So far, Raytheon has been amazing and has treated me more fairly than I could have imagined, but if something happens between me and Raytheon, I basically have no chance of picking up another private health care policy. There would be ways around this like if Eva had health coverage through her work and she could include her spouse or, since I have end stage renal disease (ESRD), I qualify for Medicare, but it is hard to know how much of the chemotherapy that has given me the last two years would be covered. Obama wants to make it law that people like me cannot be excluded because of pre-existing conditions. They can still make the premiums high, as I would expect and accept, but I would still be able to get coverage.
2. Opening up the Federal Employees Health Benefit Plan to all Americans. This would allow anyone to buy into the health insurance pool of the federal government. If something did happen to the benefits that Raytheon has so wonderfully provided, this would allow me to buy health insurance without having to have it tied to an employer. Now employers cannot discriminate based on disabilities, but I probably would not want to hire myself and I totally understand. I am barely productive, I need to take naps during the day, I have trouble focusing, and I occasionally would need to drop what I was doing or leave a meeting abruptly to go throw-up. All in all, I would be a horrible employee. Again Obama has presented the idea of opening up the federal pool to everyone and I like the idea of moving health coverage away from our employer-based system. This should have a lot of appeal to people who would like to start their own small business (often conservative) as leaving a big company with good health insurance is often a risk impeding that jump. An Obama administration would remove this hurdle.
Now, McCain had some decent ideas, too, but the two mentioned above trump everything else for my personal situation. Actually Matt Miller and McCain have the same idea about subjecting the benefit part of what your employer pays for your health coverage to federal taxes. McCain does give a $5K tax credit that would offset the tax burden and then give most people about a thousand dollars to spend on their own health care. In my situation, under this plan, if I lost my Raytheon based health coverage, I doubt if the $5K would cover a policy for me or if I could even get a chance to buy a policy. In this case, my chemotherapy would be a huge burden to my family and me and everyone would probably end up paying for me anyways as I would probably end up in the ER more often than now. People are not going to want to hear this but, the idea of opening up what the employer pays for your benefits to being taxed, is one way that the government could generate some revenues, hopefully they would be used to combat the spiraling costs of medical care, or keep Medicare solvent, or be the basis for some government pool that would offer health coverage to those who do not have it through their work place.
I am just about done ranting. I appreciate your strength of character if you are still with me. Just a couple more points…
We are ok with $85 billion to save an insurance company, and $700 billion (plus $100+ billion of incentives to get votes) to save our banking industry and the broader economy, yet we cannot find $5 billion to insure every single child in the richest nation on earth. That is a crime.
Fire fighting is not a profit seeking business. Why is health care? I trust my doctors, but the only way they get paid is if they perform a test or a procedure. Guess what? They have to do a whole lot of tests and procedures to make a decent living. If we applied this to fire fighting and paid them when they actually put out fires, we would either be continuously burning so that they could get paid, or be devastated by a huge fire because it was not profitable for them during “dry spells.” I don’t know how to do it, but we need to change our goal or mindset in the medical industry. We need to find a way to make it profitable to keep people healthy (without withholding needed care).
Now, being a democrat, I almost certainly would have voted for Obama anyways, but considering the reasons I mentioned above, my life would actually be more livable with an Obama presidency. You can think of a vote for Obama as just another way of supporting me but don’t worry, I won’t hold it against you if you vote for McCain. Personally, I would prefer if hope prevails over fear. That is what has gotten me this far and will, hopefully, get me through this disease. We all have our own reasons, and had the McCain of 2000 run this year, I would have had a harder decision myself. However you feel, please just vote and make your voice heard. If you don’t vote, you will share in none of the credit if things actually improve and I will blame you for the shortcomings of whichever man get does gets elected.
Thank you for enduring even more political talk, amongst the over abundance this campaign season. I invite any thoughts, comments, or rebukes to be posted. I would really enjoy hearing some thoughtful opposition.
As far as my health, I am still plugging away with dialysis and chemotherapy. We are starting to get into a routine with the dialysis and it really is not all that big of a burden. Chemo has been going fairly well though I still throw-up a few times after every session. The pump is as close to a modern version of a ball and chain as I can think of. I bit more portable but some actions just do not work very well with it- like spinning in circles or hula-hooping. It totally cramps my style.
I have still managed to squeeze in a bit of fun here and there. Eva and my folks saw Steve Forbes speak at the Bona Venture in downtown. That was really interesting. He painted a surprisingly rosy picture especially since the DOW lost over 700 points the day before he spoke. He thinks the feds are actually taking the appropriate action now that they are injecting liquidity into the banks. We will see. Eva and I have enjoyed getting out to see Religulous and W. Both were very enjoyable, though Religulous was much more provocative (and frightening). W was decent in that it did not paint Bush as a total idiot but more of a victim of those around him. Who knows what happens behind close doors but it was pretty entertaining.
Last night I was lucky enough to attend a small gathering for a woman running for congress in my own district, Debbie Cook. It was hosted by Dr. Geisse, an eye doctor that plays soccer with my father. Dr. Geisse is an amazingly compassionate man and has a particular ability to make you feel especially cared about. He was almost certainly my Grandmother’s favorite doctor (besides her son) and when my dad would stop by after soccer, she would inevitably ask…Did you win? Did you score? Was Dr. Geisse there? That said, he fully endorsed Debbie Cook and provided an opportunity for her to speak a bit and then take questions. I was very impressed. She was a nice, intelligent, realistic person who I think would do an excellent job as congresswoman. After most people had left, she took the time to answer a wide range of questions I put to her -everything from evolution to the financial recovery package to climate change to health care to ethanol. The evolution question was more to just determine a baseline of reasonable thought. I hope that my questions were not too smart assy, I just wanted to cover all the bases. A bit of accountability and questioning might have prevented some of the messes we are currently dealing with. I was very satisfied with each of her responses. In fact, I think in the ten minutes I spent with her, I heard more substance in her answers than in all of Sarah Palin’s answers combined. I think Debbie Cook faced more questions from me than I have seen Sarah Palin face everywhere except for the debate and Katie Couric. You should take a look at her if you live in the 46th district (a crazy district that includes Los Alimitos, Huntington Beach, a small slice of Long Beach, a slice of San Pedro, and a piece of Palos Verdes) at www.debbiecookforcongress.com. Her opponent, the incumbent Dana Rohrabacher, a Republican, has quite an interesting wikipedia page. Most of it is fairly understandable when read in context, but the table of contents was one of the most bizarre I have ever read. Anyways, she was pretty impressive and will certainly get my vote. If anyone who knows her and reads this, please thank her for spending a bit of time with me. Small encounters like these really bring government to life and are very interesting to me.
Sorry this has been a really long entry. Obviously I enjoy these topics very much. Thanks again for bearing with me. I hope to see a lot of you at the LA Cancer Challenge next Sunday (the 26th). You all have been so generous with your time and money. Thank you for being such wonderful people.
Take Care and Live Strong,
Tyler
What an amazing time that we are living through. Of my few years, this just feels like the most historic time that I have ever lived consciously. Either way that the presidential election goes, it will be historic. We have not seen stock market gyrations like this since the thirties. A Republican has just authored and approved one of the most socialist moves in our nation’s history. Again, what an amazing time. Something that really strikes me is that the citizenry is more informed than I have ever seen. I hear Obama’s and McCain’s names in conversations between people on the street, in restaurants, and in almost every other public place I might frequent. It seems like more people have an opinion one-way or another now and it is very rare to meet someone who is either oblivious to what is going on or apathetic. Don’t get me wrong, these people are still out there but it seems like their numbers have dwindled and even if you are tired of the 24 hr news channel’s minute by minute election coverage, your probably are leaning one way or another.
One big factor, which really seems to bring home this election more than the ones before it, is that it actually seems like this election matters. That real people will be directly affected by its outcome. With this consideration, I would like to mention the factors that will directly affect my life and urge you to consider them when you vote. In the interest of full disclosure, I consider myself very liberal but definitely open minded towards conservative ideas. I would hope that I weigh both sides evenly though I know that we all have a strong disposition towards seeking out views that confirm our own philosophies. One of my favorite books on the subject is Matt Miller’s 2% solution which proposes achieving a number of liberal goals using conservative means and visa-versa. Very progressive and it seems like while we are overhauling some of these institutions maybe we should look at doing it in a methodical, thoughtful way, so that we do not end up here again.
Anyways, as this blog has primarily concerned itself with my health, the issue that will affect me most is health care. There are distinct differences between the candidates that will impact my life in a very real way.
1.Pre-existing conditions. Under our current system I am basically a leper as viewed by the health insurance companies. So far, Raytheon has been amazing and has treated me more fairly than I could have imagined, but if something happens between me and Raytheon, I basically have no chance of picking up another private health care policy. There would be ways around this like if Eva had health coverage through her work and she could include her spouse or, since I have end stage renal disease (ESRD), I qualify for Medicare, but it is hard to know how much of the chemotherapy that has given me the last two years would be covered. Obama wants to make it law that people like me cannot be excluded because of pre-existing conditions. They can still make the premiums high, as I would expect and accept, but I would still be able to get coverage.
2. Opening up the Federal Employees Health Benefit Plan to all Americans. This would allow anyone to buy into the health insurance pool of the federal government. If something did happen to the benefits that Raytheon has so wonderfully provided, this would allow me to buy health insurance without having to have it tied to an employer. Now employers cannot discriminate based on disabilities, but I probably would not want to hire myself and I totally understand. I am barely productive, I need to take naps during the day, I have trouble focusing, and I occasionally would need to drop what I was doing or leave a meeting abruptly to go throw-up. All in all, I would be a horrible employee. Again Obama has presented the idea of opening up the federal pool to everyone and I like the idea of moving health coverage away from our employer-based system. This should have a lot of appeal to people who would like to start their own small business (often conservative) as leaving a big company with good health insurance is often a risk impeding that jump. An Obama administration would remove this hurdle.
Now, McCain had some decent ideas, too, but the two mentioned above trump everything else for my personal situation. Actually Matt Miller and McCain have the same idea about subjecting the benefit part of what your employer pays for your health coverage to federal taxes. McCain does give a $5K tax credit that would offset the tax burden and then give most people about a thousand dollars to spend on their own health care. In my situation, under this plan, if I lost my Raytheon based health coverage, I doubt if the $5K would cover a policy for me or if I could even get a chance to buy a policy. In this case, my chemotherapy would be a huge burden to my family and me and everyone would probably end up paying for me anyways as I would probably end up in the ER more often than now. People are not going to want to hear this but, the idea of opening up what the employer pays for your benefits to being taxed, is one way that the government could generate some revenues, hopefully they would be used to combat the spiraling costs of medical care, or keep Medicare solvent, or be the basis for some government pool that would offer health coverage to those who do not have it through their work place.
I am just about done ranting. I appreciate your strength of character if you are still with me. Just a couple more points…
We are ok with $85 billion to save an insurance company, and $700 billion (plus $100+ billion of incentives to get votes) to save our banking industry and the broader economy, yet we cannot find $5 billion to insure every single child in the richest nation on earth. That is a crime.
Fire fighting is not a profit seeking business. Why is health care? I trust my doctors, but the only way they get paid is if they perform a test or a procedure. Guess what? They have to do a whole lot of tests and procedures to make a decent living. If we applied this to fire fighting and paid them when they actually put out fires, we would either be continuously burning so that they could get paid, or be devastated by a huge fire because it was not profitable for them during “dry spells.” I don’t know how to do it, but we need to change our goal or mindset in the medical industry. We need to find a way to make it profitable to keep people healthy (without withholding needed care).
Now, being a democrat, I almost certainly would have voted for Obama anyways, but considering the reasons I mentioned above, my life would actually be more livable with an Obama presidency. You can think of a vote for Obama as just another way of supporting me but don’t worry, I won’t hold it against you if you vote for McCain. Personally, I would prefer if hope prevails over fear. That is what has gotten me this far and will, hopefully, get me through this disease. We all have our own reasons, and had the McCain of 2000 run this year, I would have had a harder decision myself. However you feel, please just vote and make your voice heard. If you don’t vote, you will share in none of the credit if things actually improve and I will blame you for the shortcomings of whichever man get does gets elected.
Thank you for enduring even more political talk, amongst the over abundance this campaign season. I invite any thoughts, comments, or rebukes to be posted. I would really enjoy hearing some thoughtful opposition.
As far as my health, I am still plugging away with dialysis and chemotherapy. We are starting to get into a routine with the dialysis and it really is not all that big of a burden. Chemo has been going fairly well though I still throw-up a few times after every session. The pump is as close to a modern version of a ball and chain as I can think of. I bit more portable but some actions just do not work very well with it- like spinning in circles or hula-hooping. It totally cramps my style.
I have still managed to squeeze in a bit of fun here and there. Eva and my folks saw Steve Forbes speak at the Bona Venture in downtown. That was really interesting. He painted a surprisingly rosy picture especially since the DOW lost over 700 points the day before he spoke. He thinks the feds are actually taking the appropriate action now that they are injecting liquidity into the banks. We will see. Eva and I have enjoyed getting out to see Religulous and W. Both were very enjoyable, though Religulous was much more provocative (and frightening). W was decent in that it did not paint Bush as a total idiot but more of a victim of those around him. Who knows what happens behind close doors but it was pretty entertaining.
Last night I was lucky enough to attend a small gathering for a woman running for congress in my own district, Debbie Cook. It was hosted by Dr. Geisse, an eye doctor that plays soccer with my father. Dr. Geisse is an amazingly compassionate man and has a particular ability to make you feel especially cared about. He was almost certainly my Grandmother’s favorite doctor (besides her son) and when my dad would stop by after soccer, she would inevitably ask…Did you win? Did you score? Was Dr. Geisse there? That said, he fully endorsed Debbie Cook and provided an opportunity for her to speak a bit and then take questions. I was very impressed. She was a nice, intelligent, realistic person who I think would do an excellent job as congresswoman. After most people had left, she took the time to answer a wide range of questions I put to her -everything from evolution to the financial recovery package to climate change to health care to ethanol. The evolution question was more to just determine a baseline of reasonable thought. I hope that my questions were not too smart assy, I just wanted to cover all the bases. A bit of accountability and questioning might have prevented some of the messes we are currently dealing with. I was very satisfied with each of her responses. In fact, I think in the ten minutes I spent with her, I heard more substance in her answers than in all of Sarah Palin’s answers combined. I think Debbie Cook faced more questions from me than I have seen Sarah Palin face everywhere except for the debate and Katie Couric. You should take a look at her if you live in the 46th district (a crazy district that includes Los Alimitos, Huntington Beach, a small slice of Long Beach, a slice of San Pedro, and a piece of Palos Verdes) at www.debbiecookforcongress.com. Her opponent, the incumbent Dana Rohrabacher, a Republican, has quite an interesting wikipedia page. Most of it is fairly understandable when read in context, but the table of contents was one of the most bizarre I have ever read. Anyways, she was pretty impressive and will certainly get my vote. If anyone who knows her and reads this, please thank her for spending a bit of time with me. Small encounters like these really bring government to life and are very interesting to me.
Sorry this has been a really long entry. Obviously I enjoy these topics very much. Thanks again for bearing with me. I hope to see a lot of you at the LA Cancer Challenge next Sunday (the 26th). You all have been so generous with your time and money. Thank you for being such wonderful people.
Take Care and Live Strong,
Tyler
Saturday, October 11, 2008
First off, just to let everyone know, the LA cancer Challenge 5K/10K is coming up on October 26th. Last year we had an incredible turn out and raised an amazing amount of money and this year is looking really good as well. We already have over 30 team members and have raised over $2500! Way to go everyone. I cannot fully express how touching all of your support is. Thank you so much for your generosity. I am really looking forward to seeing all of you. Again, we are still looking for ringers so please feel free to invite any friends or co-workers that you would like to. The link to our team page is
http://www.lacancerchallenge.com/faf/search/searchTeamPart.asp?ievent=264394&lis=1&kntae264394=500CD6879C444EE48F466D6D5D16E57D&team=3149367
If running is not your thing, don’t worry. I will certainly be walking and this year we will try to get all the walkers together so that we can chit chat during the race. I used to mock the chit chatters, and now I am one. Oh-well. At least I am still standing.
If walking is not your thing and you are looking for a swanky night out, the PANCAN gala is also coming up on November 15th. The tickets are a little pricey (it really is a bit much) but the last two years they have served some pretty decent food and I find it fun to get dressed up. It feels like I am pretending to be an adult. If you have cancer, the ticket price is waived so I guess that is one positive aspect of being a survivor. More information is available at www.pancan.org.
PANCAN put together a little video about pancreatic cancer that is up on youtube. I make a small appearance though I think I need be a little more animated.
Anyways, health-wise I am still doing pretty well. I was scanned last week and it looks like the cyst may have gotten slightly smaller and the mets in the liver are a little less obvious than before. All in all, very positive. Any scan with little change is really encouraging. On the current two week regimen, I usually feel like crap for the first 3-5 days and then it slowly improves so that the couple days before the next infusion I usually feel pretty good and pretty normal. I have still been throwing up pretty regularly after infusions. That is no fun. I may need to go back on the super calorie diet, as I am a little light on the scales these days. Depending on how much excess water I am carrying, it will end up either in my face or my ankles though the last few days my ankles have been fairly normal for most of the day. If I keep my feet elevated for good portions of the day, I can usually keep the edema to a tolerable level. If I spend all day standing or sitting with my feet down, by the evening my ankles look like the ankles I would imagine a 350-pound man would have.
As far as activities, I had a really good time with some of my college buddies last weekend. We all met up at Pesto’s place down in Newport. Talk about nice digs. It took about 5 minutes before a political discussion erupted and about 7 minutes before Tom and John started wrestling. The guys are always a wonderful distraction and everyone seems to be doing really well. The guys except Pesto were accompanied by their significant others which was really nice so that I had somebody to talk to while the guys were wrestling. I never really wrestled, even when I was living in the trackhouse. I guess it may be just a bit too homoerotic for me. As usual, Coffee managed to use pressure points to his advantage. Here, Coffee, John, and Tom are playing a bit too close to the water’s edge.
Both Saturday and Sunday we spent some time on the sand, which was just so nice. I would have liked to go into the water, but the waves were pretty powerful and breaking right on shore. The color was amazing.
This did not stop Coffee, Tom, and John from “reverse bodysurfing” where they would wait for the wave to break, then lie down and let the water sort of pull them into the ocean. Essentially, a great way to get sand in every orifice. Much to our surprise, Tom arranged for us to attend the symphony at the Walt Disney Concert Hall on Saturday night. We debated whether the impetus for the symphony was Tom wanting to get as much use as possible out of the suit he had made for himself in Beijing or Tom wanting to impress his new girlfriend Shannon. I think I am leaning towards the latter. The LA phil performed brilliantly, as expected, though I was going a little nuts trying to find where the snare drum was when they played Bolero (hidden between the basses and the cellos). After the concert we got a late dinner at Kendell’s, beneath the Music Center (thanks Dad). It was really tasty though this was the second time I got tricked by the shrimp and avocado salad. I always think they will include lettuce and it really is just shrimp and avocado.
This week was the first full week that I was dialyzing at home again. I am getting more comfortable with starting my own lines and my button holes are coming along nicely. I don’t want to jinx it, but I have been getting a little better and the squirting has eased up a bit. It’s a good thing, too considering that we have white carpet. There was a little excitement yesterday when I was accessing my fistula with my father. I got both needles in ok, but then when I was securing my venous line, I accidentally nudged the needle and it came out. Luckily, there was gauze over the needle all ready and as it started to soak the gauze I just applied pressure and stopped the bleeding. That was a new one. We did not practice that during training. Then as I was applying pressure I was wondering how I was going to create a venous access so that I could proceed with dialysis. For a brief minute we pondered whether or not I could remove the gauze and stick myself really quickly before I bled too much. Yeah, that did not sound like all that great of an idea so we just waited until I had clotted and the bleeding had stopped and then I stuck myself like normal (well, normal for me I guess). After the excitement had subsided, everything went smoothly. The fistula really is an amazing concept. My button holes are barely noticeable yet they get stuck with 15 gauge needles four times a week. I was wondering with my father whether or not there might be a cost benefit to giving drug addicts fistulas and creating button holes to prevent infections and keep them out of the ER. Now that would be a pretty progressive policy. I don’t really see it happening anytime soon.
A big guy in my life over the last few months has been my Home Hemodialysis training nurse, Richard. He trained me to use the Nx Stage system through both my perm-a-cath and my fistula and has become a great friend. His calmness and thoughtfulness made a potentially scary situation (stabbing yourself) very manageable. Thanks Richard!
Here is a pic of the two lines coming out of my fistula. Fun, fun, fun.
Yesterday, after dialysis, my father and I went to the Page museum in Hancock Park. It was a really nice little outing. The museum is small enough that I had no problem walking around the whole thing and it was really enjoyable as it brought back a number of memories from when I was a kid. I still love raising the poles in the tar that gives you a sense of what it would be like if you accidentally stepped in tar. The mammoth skeleton is really impressive and seeing the people actually working on cleaning up fossils was pretty cool. There is something of a fishbowl laboratory where you can actually watch archeology in action. It is just so tempting, though, to taunt the paleontologists who are working. It took a fair amount of restraint to not press my mouth against the glass and inflate my cheeks or lift up my shirt and press my nipple against the glass. I just wonder how they would react. Would they be shocked and possibly drop the specimen they were working on or do they get yahoos like me all the time and by now, it doesn’t even phase them any more. After the museum, my father and I had a wonderful later afternoon meal in the outdoor patio at Marie Calendar’s next door. As we sat there enjoying our happy hour pizzas in the warm sun on a cloudless day, you would hardly even know that the financial world was imploding. Again I just feel incredibly lucky to still be doing very well and am very grateful for the wonderful support from my wife, my parents, and Raytheon. All have done so well by me and I am in each of their debt.
Today, I had an infusion at Dr. Isacoff’s. It was the usual routine of running down my status, checking the blood, and then dripping the chemo. Usually by the time I go in for each infusion I am feeling pretty good so I was wondering, if that is all Dr. Isacoff sees, he probably thinks I just feel great all the time. I should give him an update a couple days after an infusion and I would not be surprised if I got a little puke on the form. Just a little disclaimer-I am writing this post infusion and I did feel like crap about an hour ago so I took a couple oxyir and now am feeling pretty nice between little spells of nausea. I hope this entry is coherent.
Again, I am really looking forward to seeing a lot of you at the Cancer Challenge. Thank you also to those who will be there in spirit. I hope that everyone is doing well.
Take Care and Live Strong,
Tyler
http://www.lacancerchallenge.com/faf/search/searchTeamPart.asp?ievent=264394&lis=1&kntae264394=500CD6879C444EE48F466D6D5D16E57D&team=3149367
If running is not your thing, don’t worry. I will certainly be walking and this year we will try to get all the walkers together so that we can chit chat during the race. I used to mock the chit chatters, and now I am one. Oh-well. At least I am still standing.
If walking is not your thing and you are looking for a swanky night out, the PANCAN gala is also coming up on November 15th. The tickets are a little pricey (it really is a bit much) but the last two years they have served some pretty decent food and I find it fun to get dressed up. It feels like I am pretending to be an adult. If you have cancer, the ticket price is waived so I guess that is one positive aspect of being a survivor. More information is available at www.pancan.org.
PANCAN put together a little video about pancreatic cancer that is up on youtube. I make a small appearance though I think I need be a little more animated.
Anyways, health-wise I am still doing pretty well. I was scanned last week and it looks like the cyst may have gotten slightly smaller and the mets in the liver are a little less obvious than before. All in all, very positive. Any scan with little change is really encouraging. On the current two week regimen, I usually feel like crap for the first 3-5 days and then it slowly improves so that the couple days before the next infusion I usually feel pretty good and pretty normal. I have still been throwing up pretty regularly after infusions. That is no fun. I may need to go back on the super calorie diet, as I am a little light on the scales these days. Depending on how much excess water I am carrying, it will end up either in my face or my ankles though the last few days my ankles have been fairly normal for most of the day. If I keep my feet elevated for good portions of the day, I can usually keep the edema to a tolerable level. If I spend all day standing or sitting with my feet down, by the evening my ankles look like the ankles I would imagine a 350-pound man would have.
As far as activities, I had a really good time with some of my college buddies last weekend. We all met up at Pesto’s place down in Newport. Talk about nice digs. It took about 5 minutes before a political discussion erupted and about 7 minutes before Tom and John started wrestling. The guys are always a wonderful distraction and everyone seems to be doing really well. The guys except Pesto were accompanied by their significant others which was really nice so that I had somebody to talk to while the guys were wrestling. I never really wrestled, even when I was living in the trackhouse. I guess it may be just a bit too homoerotic for me. As usual, Coffee managed to use pressure points to his advantage. Here, Coffee, John, and Tom are playing a bit too close to the water’s edge.
Both Saturday and Sunday we spent some time on the sand, which was just so nice. I would have liked to go into the water, but the waves were pretty powerful and breaking right on shore. The color was amazing.
This did not stop Coffee, Tom, and John from “reverse bodysurfing” where they would wait for the wave to break, then lie down and let the water sort of pull them into the ocean. Essentially, a great way to get sand in every orifice. Much to our surprise, Tom arranged for us to attend the symphony at the Walt Disney Concert Hall on Saturday night. We debated whether the impetus for the symphony was Tom wanting to get as much use as possible out of the suit he had made for himself in Beijing or Tom wanting to impress his new girlfriend Shannon. I think I am leaning towards the latter. The LA phil performed brilliantly, as expected, though I was going a little nuts trying to find where the snare drum was when they played Bolero (hidden between the basses and the cellos). After the concert we got a late dinner at Kendell’s, beneath the Music Center (thanks Dad). It was really tasty though this was the second time I got tricked by the shrimp and avocado salad. I always think they will include lettuce and it really is just shrimp and avocado.
This week was the first full week that I was dialyzing at home again. I am getting more comfortable with starting my own lines and my button holes are coming along nicely. I don’t want to jinx it, but I have been getting a little better and the squirting has eased up a bit. It’s a good thing, too considering that we have white carpet. There was a little excitement yesterday when I was accessing my fistula with my father. I got both needles in ok, but then when I was securing my venous line, I accidentally nudged the needle and it came out. Luckily, there was gauze over the needle all ready and as it started to soak the gauze I just applied pressure and stopped the bleeding. That was a new one. We did not practice that during training. Then as I was applying pressure I was wondering how I was going to create a venous access so that I could proceed with dialysis. For a brief minute we pondered whether or not I could remove the gauze and stick myself really quickly before I bled too much. Yeah, that did not sound like all that great of an idea so we just waited until I had clotted and the bleeding had stopped and then I stuck myself like normal (well, normal for me I guess). After the excitement had subsided, everything went smoothly. The fistula really is an amazing concept. My button holes are barely noticeable yet they get stuck with 15 gauge needles four times a week. I was wondering with my father whether or not there might be a cost benefit to giving drug addicts fistulas and creating button holes to prevent infections and keep them out of the ER. Now that would be a pretty progressive policy. I don’t really see it happening anytime soon.
A big guy in my life over the last few months has been my Home Hemodialysis training nurse, Richard. He trained me to use the Nx Stage system through both my perm-a-cath and my fistula and has become a great friend. His calmness and thoughtfulness made a potentially scary situation (stabbing yourself) very manageable. Thanks Richard!
Here is a pic of the two lines coming out of my fistula. Fun, fun, fun.
Yesterday, after dialysis, my father and I went to the Page museum in Hancock Park. It was a really nice little outing. The museum is small enough that I had no problem walking around the whole thing and it was really enjoyable as it brought back a number of memories from when I was a kid. I still love raising the poles in the tar that gives you a sense of what it would be like if you accidentally stepped in tar. The mammoth skeleton is really impressive and seeing the people actually working on cleaning up fossils was pretty cool. There is something of a fishbowl laboratory where you can actually watch archeology in action. It is just so tempting, though, to taunt the paleontologists who are working. It took a fair amount of restraint to not press my mouth against the glass and inflate my cheeks or lift up my shirt and press my nipple against the glass. I just wonder how they would react. Would they be shocked and possibly drop the specimen they were working on or do they get yahoos like me all the time and by now, it doesn’t even phase them any more. After the museum, my father and I had a wonderful later afternoon meal in the outdoor patio at Marie Calendar’s next door. As we sat there enjoying our happy hour pizzas in the warm sun on a cloudless day, you would hardly even know that the financial world was imploding. Again I just feel incredibly lucky to still be doing very well and am very grateful for the wonderful support from my wife, my parents, and Raytheon. All have done so well by me and I am in each of their debt.
Today, I had an infusion at Dr. Isacoff’s. It was the usual routine of running down my status, checking the blood, and then dripping the chemo. Usually by the time I go in for each infusion I am feeling pretty good so I was wondering, if that is all Dr. Isacoff sees, he probably thinks I just feel great all the time. I should give him an update a couple days after an infusion and I would not be surprised if I got a little puke on the form. Just a little disclaimer-I am writing this post infusion and I did feel like crap about an hour ago so I took a couple oxyir and now am feeling pretty nice between little spells of nausea. I hope this entry is coherent.
Again, I am really looking forward to seeing a lot of you at the Cancer Challenge. Thank you also to those who will be there in spirit. I hope that everyone is doing well.
Take Care and Live Strong,
Tyler
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