Just wakin up in the mornin' gotta thank god.
I dont know but today seemed kinda odd.
No barkin' from the dog, no smog
and momma cookin' breakfast with no hog.
Neighbor Noey usually takes the kids to school in the morning. For some reason yesterday the chickenhawk took the kids instead. I usually wait for her to come get me up and help me get dressed. Not yesterday. I got up on my own and dressed all by myself. (big deal.)
I was ready for breakfast by the time she got back. Had a nice plate of potatoes and eggs and decided that today was the day. I made my first voluntary trip out of the house since being diagnosed. It has been a quite week; no trips to the doctors offices. or reasons to go out so I made one up. The c/h was good enough to cart my ass out to the supermarket. I hobbled in to the front door and found the loaner lark. You know the little battery operated go-kart that the old folks use to get around the store. It was great. I haven't been able to drive since February so it felt really good to go faster than a walk while also doing the driving.
We bought about $100 worth of beverages. Since I started treatment everything tastes weird or bad, especially water, so I am in a constant search for something to drink that tastes good. So I bought all kinds of juices and teas and stuff. It was great making my own decisions instead of asking someone to go to the store for me and buy something that I am trying to describe. It was great. We picked up our youngest one from pre-school on the way home.
When we got home I was toast. I layed down in the bedroom for a couple of hours but never really slept. I got up around 3 feeling refreshed and hung out with the kids for a while. We watched an episode of the Deadliest Catch a DVD that we borrowed from Scooter. I took another break before dinner and came out feeling ready to get my grub on.
Monday is my night to take dexamethasone. It is an awful drug that usually rips my stomach to shreds. I tried a new strategy last night. We were eating burritos and I buried the drug deep in a big meal of refried beans, rice gauc and cheese. It really seemed to work I never felt very sick from the drug. What a releif.
I've been reading a cycling murder mystery called Two Wheels by Greg Moody. It was in a big box of books that Ray lent me. It is great escapist fun for me to read about some fictional American bike racer in Europe. So that kept me entertained while the C/H rustled the kids through the evening routine. Afterwards we watched about an hour of The God Father, we have the box set of the series that was loaned to us by Bill.
So that is a picture of a day in the life. The big difference is that I felt really good all day. I'll take it.
Tuesday, April 29, 2008
Sunday, April 27, 2008
What I'm Not Doing
Here we are the third weekend in April. For the last five years or so I have done the Chico Wildflower Century on this weekend. It is my favorite century for many reasons. Most of all is the terrain. It is classic valley/ foothills transition. The course goes up from Chico to the little town of Paradise and then drops down by Lake Oroville and climbs back up on to table mountain. Neither of the climbs are very big. They are actually a typical length of climb for what I am used to riding around Coloma 1,00 0 to 1,500 feet or so. The rest of the ride is great rolling terrain except for the finish which is about 25 miles of pan flat valley riding. I love that part, mostly because I never get to ride roads like that but there is more.
Over the last few years of doing the ride I have discovered that the funnest way to do the ride is with a crew of strong riders. At the end of the ride, when you hit the flats and start working on a pace line the speeds stay in the mid twenties pretty easily. That is how I've done it for the last couple of years and it is a treat. Usually the guys I am riding with pick up a giant line of "passengers" a group of riders that are tucked into our slip stream that wont go to the front of the group and take a pull. That is fine. For some reason on that course as the flat miles tick by, I get stronger. I really enjoy those flats. As we start rolling into Chico I get frisky and start speeding up and generally start monkeying around.
The weather is a mix. This weekend it is hot and dry. In the past I have been rained on a couple of times. But I have always finished the ride in sunshine. It is also usually the peak of wildflower season in the foothills here in CA. This year it is quite late though. The food on the ride is really good. They make a salad that is really good... Maybe it just taste really good because I am starving when I finish.
So, that is what I am not doing this weekend. Instead, I am on the couch. Not much to report. The DVD player is on the fritz. I think I wore it out watching movies. I have a giant stack of loaners from friends. I amm Feeling pretty good. I watched Liege Bastonge Liege on VS. Good gawd there were a lot of commercials! I really wanted to see one of the Schelck brothers win but Andy got dropped after that big effort. I've been enjoying a bunch of CDs that Stu made for me a while back. Thanks dude.
Feels like we are in a limbo a bit. Waiting to see if the treatment is working, waiting to find out when I go for a BMT. Waiting for the next IV Chemo session to kick my butt.
I sure am looking forward to being done with this.
Over the last few years of doing the ride I have discovered that the funnest way to do the ride is with a crew of strong riders. At the end of the ride, when you hit the flats and start working on a pace line the speeds stay in the mid twenties pretty easily. That is how I've done it for the last couple of years and it is a treat. Usually the guys I am riding with pick up a giant line of "passengers" a group of riders that are tucked into our slip stream that wont go to the front of the group and take a pull. That is fine. For some reason on that course as the flat miles tick by, I get stronger. I really enjoy those flats. As we start rolling into Chico I get frisky and start speeding up and generally start monkeying around.
The weather is a mix. This weekend it is hot and dry. In the past I have been rained on a couple of times. But I have always finished the ride in sunshine. It is also usually the peak of wildflower season in the foothills here in CA. This year it is quite late though. The food on the ride is really good. They make a salad that is really good... Maybe it just taste really good because I am starving when I finish.
So, that is what I am not doing this weekend. Instead, I am on the couch. Not much to report. The DVD player is on the fritz. I think I wore it out watching movies. I have a giant stack of loaners from friends. I amm Feeling pretty good. I watched Liege Bastonge Liege on VS. Good gawd there were a lot of commercials! I really wanted to see one of the Schelck brothers win but Andy got dropped after that big effort. I've been enjoying a bunch of CDs that Stu made for me a while back. Thanks dude.
Feels like we are in a limbo a bit. Waiting to see if the treatment is working, waiting to find out when I go for a BMT. Waiting for the next IV Chemo session to kick my butt.
I sure am looking forward to being done with this.
Friday, April 25, 2008
Garden and updates
Hurrah!! The Garden is in. We started building it a month ago at the Minga work party. There was not enough time or materials then to finish the project but not to worry. A couple of people, specifically Patrick and Jim would not quit. Both guys came back on multiple occasions to finish the fence, deliver soil and hang the gate. Annette, Pats wife, also made a fantastic snake sculpture that guards the gate. It is so great to be the recipient of such hard work and dedication.
A couple of years ago Jim said something to me that has stuck in my mind; "One way to find out who your real friends are is to call them at four in the morning. " Nothing about having cancer is convenient, on the contrary it is a giant inconvenience. But folks like Patrick and Jim don't seem to mind. They jump up and help. So many people have jumped up and helped it is amazing.
I was speaking with Aunt Judy yesterday. She had read a study that was done on people recovering from serious illness. The study found that the single largest factor contributing to recovery is a solid family and community support group. I know gratitude is one of my big themes here in this blog but I want to look at it from another direction for a minute.
Think of all of the young men that are returning home from service in the middle east right now. Many of them with life changing injuries. Many of these guys went into the military because their resources were limited in the first place. The burden that these poor guys put on their families is huge. I have also seen in the news that the support that our government is supplying for these guys is lacking. It is a real shame that those guys should want for anything. I don't mean to get all political here. I am trying to show how lucky I feel. Lucky to live in such a great community, lucky that I have in my my life I have reached out to so many folks and made such great friends. So many four-in- the-morning-friends. So thanks Jim Patrick and Annette and so many others that are helping us out.
Other News:
We have been working on getting our ducks in a row for the Bone Marrow Transplant (BMT). Really it is mostly the chickenhawk doing that. We don't know when the BMT will be. It is dependent on when and how well my current oral chemotherapy is working. Once that oral chemo's results start to plateau, then I will go shift over to the BMT. We are hoping that is going to be solidly in the middle of the summer so that it has a minimal impact on the kids and school. But, as I said earlier, there is nothing convenient about cancer.
Yesterday, when I was getting out of bed I could tell that the C/H was really upset about something. I started probing right away. She quickly shared that she had read in our health insurance contract that our policy on pays for 100 days worth of outpatient medication! That is a big deal. The actual cost of the meds that I am taking is in the many thousands of dollars per month range. If we have to cover the cost of the meds on our own after 100 days we are screwed! We both got morose and resigned at the same time. I was thinking about which bikes I would sell first and which retirement account I would drain.
Then the C/H spent an hour working through voice mail hell and called the member services people to get clarification... "Oh no," the voice on the other end said, "you've got it all wrong. You only get 100 days worth of meds at a time once you run out of those, you can re-up for another 100 days." We got all worked up for no reason. That is the nature of the beast. We are on the edge so much of the time. It doesn't take much to push us over the top.
So my question to you; when have you gone over the top about something that ended up being no big deal?
Monday, April 21, 2008
Breaking it Down
In all of the difficult athletic challenges I have taken, when things get hard my strategy has been to break the big task into smaller steps. On hard whitewater, I try to maintain my focus by just thinking about each move as it comes and not worrying about the entire run. At the end of the day I feel like I just did a bunch of challenging moves rather than a whole day of difficult whitewater.
On the bike when I am cooked and just need to finish, I'll get to the point where I am just riding from one telephone pole to the next one- breaking the ride down into series of 100 yard sections. That makes it easier than thinking about how many more miles I have to go before I get to eat pizza and drink a beer.
With this cancer treatment I am doing the same thing. I mark my progress with my Thalidomide package. I take one pill a day, they come in packs of one month worth of pills. The pills are in a bubble pack, you push them out of the plastic bubble through the paper, you know the type... Those pills are arranged into four rows of seven each representing a weeks worth of treatment. Each day I kill one more pill and I feel like I got something done. Last night, I pushed out the last pill in my 8th week of treatment. Two packs down. Two months of taking care of business! That feels like a really big deal to me.
When I started, the doc told me I would be in this phase of the treatment for three to four months so, hopefully, I am halfway done with this phase. I have no illusions here, there is a possibility that this treatment might not be working at all and I'll have to go back to the drawing board. Whatever happens, I have got two months of training under my belt, I know more now about cancering than I did two months ago. I hope the whole thing is over sooner rather than later but at least I am getting better at doing this.
I want to share something else...
This guy named Randy Pausch, a professor at Carnegie Mellon University was diagnosed with Pancreatic Cancer and given 3 to 6 months of good health. He prepared a "last lecture" titled "Really Achieve Your Childhood Dreams." He then went on to record another lecture about time management. Both lectures are a little longer than an hour long and both are fantastic. They are very worth the time it takes to listen. I downloaded the Audio and listened to them on my ipod. I also burned a disc of both of them from ITunes so that works as well.
His Website is here. From there you can choose to watch the video lecture or download the audio lecture or get the transcripts, take your pick. I promise you will enjoy them. The time management is especially good for professionals who have trouble balancing the demands of work, family and life. Enjoy. Thanks to David and Granny for telling me about him.
If you are just checking in here, I have done two posts in two days! keep scrolling down to read the post I did yesterday.
Cheers
On the bike when I am cooked and just need to finish, I'll get to the point where I am just riding from one telephone pole to the next one- breaking the ride down into series of 100 yard sections. That makes it easier than thinking about how many more miles I have to go before I get to eat pizza and drink a beer.
With this cancer treatment I am doing the same thing. I mark my progress with my Thalidomide package. I take one pill a day, they come in packs of one month worth of pills. The pills are in a bubble pack, you push them out of the plastic bubble through the paper, you know the type... Those pills are arranged into four rows of seven each representing a weeks worth of treatment. Each day I kill one more pill and I feel like I got something done. Last night, I pushed out the last pill in my 8th week of treatment. Two packs down. Two months of taking care of business! That feels like a really big deal to me.
When I started, the doc told me I would be in this phase of the treatment for three to four months so, hopefully, I am halfway done with this phase. I have no illusions here, there is a possibility that this treatment might not be working at all and I'll have to go back to the drawing board. Whatever happens, I have got two months of training under my belt, I know more now about cancering than I did two months ago. I hope the whole thing is over sooner rather than later but at least I am getting better at doing this.
I want to share something else...
This guy named Randy Pausch, a professor at Carnegie Mellon University was diagnosed with Pancreatic Cancer and given 3 to 6 months of good health. He prepared a "last lecture" titled "Really Achieve Your Childhood Dreams." He then went on to record another lecture about time management. Both lectures are a little longer than an hour long and both are fantastic. They are very worth the time it takes to listen. I downloaded the Audio and listened to them on my ipod. I also burned a disc of both of them from ITunes so that works as well.
His Website is here. From there you can choose to watch the video lecture or download the audio lecture or get the transcripts, take your pick. I promise you will enjoy them. The time management is especially good for professionals who have trouble balancing the demands of work, family and life. Enjoy. Thanks to David and Granny for telling me about him.
If you are just checking in here, I have done two posts in two days! keep scrolling down to read the post I did yesterday.
Cheers
Sunday, April 20, 2008
IV Chemo Round I
Well just when you think everything is going along really well, BAM there is something to put you back into reality. The chickenhawk and I had a busy week scheduled. We had to go down the hill to doctors visits on Monday, Wednesday and Thursday. A couple of the trips were early so I would have to get out of bed earlier than normal... We were pretty psyched up for it. Chickenhawk's younger sister came down from Oregon without her kids or husband to spend the week giving us a hand. It was a huge contribution because she could take care of the kids really easily while we spent the week at doctors appointments.
Thursday was my last set of appointments. I had to go to a class on chemotherapy that they make everyone go to before they can get IV chemotherapy. Thus far my chemo therapy has all been oral and as a result not as gnarly as intravenous chemo. The oncologist decided that I was ready to receive some IV chemo. Now this IV chemo is not really for killing cancer cells, it is for strengthening my bones. The drug that they gave me is called zometa and it only takes 1/2 hour to get it onto me. So right after the class they took me downstairs and hooked me up to the IV pole.
In the class they gave us all handouts about our specific chemo drugs. These handouts tell you all of the "potential" side effects. Mine was constipation (always constipation) muscle, joint and bone soreness, fever, chills, muscle spasms, fatigue, nausea and a few other things. The nurses at the chemo clinic were really nice, they tool really good care of us and I barely had time to crack a magazine before we were out of there. On the way home, it felt like the last day of school before summer vacation. We were done with the hard week and had the whole weekend to chill out. I was singing along with the car radio and feeling great. Got home around 3 and took a nap.
When I woke up, the world had changed. I was starting to feel not so great. On Friday morning I was toast. I cant really remember what happened on Friday other than I felt really really bad. It felt how I would feel if I rode three days of the tour de france in the alps. I was hammered. My temperature started to creep up and basically all of the aforementioned side effects happened in a big way especially fatigue. I slept like crazy. I had trouble moving due to all of the pain and had to break into the emergency morphine stash a couple of times. It was pretty much a new low point in the cancering process. The crazy thing is my chemo is one of the more mild chemos. Holy sh%$! I cant imagine getting through the rougher ones.
I felt a little bit better on Saturday and I watched 3 movies... Unbreakable, Life is Beautiful, and 3:10 to Yuma. I did not talk on the phone. I didn't have the energy. I could barely eat, going to the bathroom was a challenge. I am writing this on Sunday and I starting to feel back to my "normal" self. I watched Paris Roubaix today with KD and that was the highlight of the weekend. Boonen is frickin amazing. He ran that race perfectly.
I'll post more soon, gotta go to save energy.
Thursday was my last set of appointments. I had to go to a class on chemotherapy that they make everyone go to before they can get IV chemotherapy. Thus far my chemo therapy has all been oral and as a result not as gnarly as intravenous chemo. The oncologist decided that I was ready to receive some IV chemo. Now this IV chemo is not really for killing cancer cells, it is for strengthening my bones. The drug that they gave me is called zometa and it only takes 1/2 hour to get it onto me. So right after the class they took me downstairs and hooked me up to the IV pole.
In the class they gave us all handouts about our specific chemo drugs. These handouts tell you all of the "potential" side effects. Mine was constipation (always constipation) muscle, joint and bone soreness, fever, chills, muscle spasms, fatigue, nausea and a few other things. The nurses at the chemo clinic were really nice, they tool really good care of us and I barely had time to crack a magazine before we were out of there. On the way home, it felt like the last day of school before summer vacation. We were done with the hard week and had the whole weekend to chill out. I was singing along with the car radio and feeling great. Got home around 3 and took a nap.
When I woke up, the world had changed. I was starting to feel not so great. On Friday morning I was toast. I cant really remember what happened on Friday other than I felt really really bad. It felt how I would feel if I rode three days of the tour de france in the alps. I was hammered. My temperature started to creep up and basically all of the aforementioned side effects happened in a big way especially fatigue. I slept like crazy. I had trouble moving due to all of the pain and had to break into the emergency morphine stash a couple of times. It was pretty much a new low point in the cancering process. The crazy thing is my chemo is one of the more mild chemos. Holy sh%$! I cant imagine getting through the rougher ones.
I felt a little bit better on Saturday and I watched 3 movies... Unbreakable, Life is Beautiful, and 3:10 to Yuma. I did not talk on the phone. I didn't have the energy. I could barely eat, going to the bathroom was a challenge. I am writing this on Sunday and I starting to feel back to my "normal" self. I watched Paris Roubaix today with KD and that was the highlight of the weekend. Boonen is frickin amazing. He ran that race perfectly.
I'll post more soon, gotta go to save energy.
Sunday, April 13, 2008
Friends and Family
One of the great things about having cancer is manifest in the blog. I have not completely put my finger on it yet so I will try to here. I have had a long, fun life. The importance of having fun was clear to me from an early age. One of the things that has made my life so fun is all of the people that have been in my life; I have so many great memories of good times, adventures and parties and those memories stay there because of the people that I shared those good times with.
Since I was diagnosed people have come out of the woodwork to reach out, say a kind word, let me know they are there and thinking good thoughts or praying to their deity of choice for me. It has been wonderful. I have always been passionate about my friends. Wherever life leads me, I seem to make friends pretty easily and once you are my friend, you are my friend for life. I am passionate about the people that I spend time with because they are what makes life so great.
One of my favorite occasions is when I am able to get two groups of friends together. When I was a kid loved it when I was allowed to bring a friend on a family trip. Then I was sharing my family with my friend and we were all getting to know one another. I was bussed to school from 3rd through 8th grade so I had friends in school and then friends in my neighborhood and friends from the yacht racing. I loved it when I was able to get those groups together. As an adult I have loved the occasions where I can get my friends from work to play with my friends from home life. When I am surrounded by my friends I feel safe and warm, like nothing on earth could possibly hurt me.
I have shared so many amazing adventures with friends that I could write this blog only about all of the different fun times I have had and the friends I was with. I could write a post a day and never run out of material.
As the years pass we all get busy with our lives and go in many different directions. I am so amazed and pleased with the many different and wonderful things all of my friends have done. If you are reading this and we have spent time together, then I am talking about you. I am proud to call you a friend. Nothing makes me happier than when you are happy, when you are experiencing success, or growth or just a good stoke.
There is something that I have been trying to nail down since the work party two weeks ago. I wrote about it before, about the movie Saving Private Ryan, where the Tom Hanks character tells private Ryan to earn the life that all these men have died to save for you… I have felt like I had to earn all of the kindness and self sacrifice that has been sent my way since my diagnosis. Adam has set me straight by telling me that all of the goodness, all of the gifts that I have been given are something that I earned by being myself up until this point and I am really beginning to see that is the case.
I see now that all the years of working and playing with all these great people have been a huge deposit in the karma bank. I certainly never thought of it that way until now but I can tell you that it has been really really rewarding to have so many great friends, both old and new reach out to me lately. It makes me realize just how blessed I am.
Then there is a whole other dimension to this. As I have become more and more feeble, and my family has become more and more stressed by the challenge of cancering many of those friends have stepped up in a big way to help out. This is really more than my little family is able to do on its own. So now we have meals brought to us several times a week, we have had a work party where 50 people came and worked on our house and our yard. The whole community has helped out with watching our kids. We now have a much bigger family. When someone shows up with tonight’s dinner or when there is a gang of people working on our garden or the kids come home from a great day of skiing that the C/H and I had nothing to do with, I feel as though my family is bigger. I feel like I have gained a whole bunch of brothers and sisters. So that is one of the real gifts of cancer.
Since I was diagnosed people have come out of the woodwork to reach out, say a kind word, let me know they are there and thinking good thoughts or praying to their deity of choice for me. It has been wonderful. I have always been passionate about my friends. Wherever life leads me, I seem to make friends pretty easily and once you are my friend, you are my friend for life. I am passionate about the people that I spend time with because they are what makes life so great.
One of my favorite occasions is when I am able to get two groups of friends together. When I was a kid loved it when I was allowed to bring a friend on a family trip. Then I was sharing my family with my friend and we were all getting to know one another. I was bussed to school from 3rd through 8th grade so I had friends in school and then friends in my neighborhood and friends from the yacht racing. I loved it when I was able to get those groups together. As an adult I have loved the occasions where I can get my friends from work to play with my friends from home life. When I am surrounded by my friends I feel safe and warm, like nothing on earth could possibly hurt me.
I have shared so many amazing adventures with friends that I could write this blog only about all of the different fun times I have had and the friends I was with. I could write a post a day and never run out of material.
As the years pass we all get busy with our lives and go in many different directions. I am so amazed and pleased with the many different and wonderful things all of my friends have done. If you are reading this and we have spent time together, then I am talking about you. I am proud to call you a friend. Nothing makes me happier than when you are happy, when you are experiencing success, or growth or just a good stoke.
There is something that I have been trying to nail down since the work party two weeks ago. I wrote about it before, about the movie Saving Private Ryan, where the Tom Hanks character tells private Ryan to earn the life that all these men have died to save for you… I have felt like I had to earn all of the kindness and self sacrifice that has been sent my way since my diagnosis. Adam has set me straight by telling me that all of the goodness, all of the gifts that I have been given are something that I earned by being myself up until this point and I am really beginning to see that is the case.
I see now that all the years of working and playing with all these great people have been a huge deposit in the karma bank. I certainly never thought of it that way until now but I can tell you that it has been really really rewarding to have so many great friends, both old and new reach out to me lately. It makes me realize just how blessed I am.
Then there is a whole other dimension to this. As I have become more and more feeble, and my family has become more and more stressed by the challenge of cancering many of those friends have stepped up in a big way to help out. This is really more than my little family is able to do on its own. So now we have meals brought to us several times a week, we have had a work party where 50 people came and worked on our house and our yard. The whole community has helped out with watching our kids. We now have a much bigger family. When someone shows up with tonight’s dinner or when there is a gang of people working on our garden or the kids come home from a great day of skiing that the C/H and I had nothing to do with, I feel as though my family is bigger. I feel like I have gained a whole bunch of brothers and sisters. So that is one of the real gifts of cancer.
Friday, April 11, 2008
Paris Roubaix
CORRECTION: Show time for Paris Roubaix is next Sunday APRIL 20th at 1PM. Apparently there is some sort of Tennis event that versus deems to be more important. So we will have to wait a whole week to see the race. The real question is will you be able to keep from finding out who the winner is so that you can watch the race on TV and be surprised? Not me. On the bright side that gives them a whole week to work on the production quality which has gone downhill in the last couple of years.
Sunday is Paris Roubaix which sound like no big deal to a non cycling sports fan but for a cycling fan this is the equivalent of the Super Bowl or a Heavy Weight World Championship bout. It is arguably the hardest one day endurance event race that is done.
I could try to write about it but there is no way I can do it justice. You can go here to read about this year's race. In a nutshell it is a 259 km (168mi) race over roads that date back to the roman empire. In fact 50+ km of this years race will be over stone cobbles. All this on skinny tired road bikes. It is an all out battle of strength and determination and only the guys that can go really fast under very adverse conditions while also making good tactical decisions stand a chance of doing well. This year should be extra exciting because the forecast for the area is cold and rain with possibly even some snow!
Showtime is 4pm Eastern time on Versus if you get it. If you don't find a friend who does and bring over a six pack of Belgian beer and some sausages. This will be the race to watch this year.
Tuesday, April 8, 2008
Hamster Training
We were chatting last night about running on treadmills. The C/H was relating the story of her recent first experience with a treadmill at the local gym. It sounded pretty much like something out a Chevy Chase Saturday Night Live opening scene. But it also got me thinking about the difference between runners and riders. Now I used to say that the only thing that would make me run is if something was chasing me. However in the pre-diagnosis months where my body was deteriorating one of my goals became to run with out pain. It is still one of my goals. But for all intents and purposes I am not a runner. I am a rider. Running bores me, it hurts, you don't go very far, and it is hard on your body.
I do have lots of friends who are runners some of them very accomplished runners and I have the utmost respect for runners. I am married to one. I do appreciate the simplicity of running. It is the way that the original humans got around when they were in a hurry. You don't really need any special gear and it is ultimately pure as a form of recreation. It just doesn't float my boat.
However it seems to me that runners are more likely to be willing to or even enjoy running indoors on a treadmill while listening to their Ipod. The cycling equivalent of this is riding rollers or a trainer which is a different story all together. Most of the complaints that I have about running, indoors or out, are the same complaints about riding indoors. It is boring, you don't go anywhere and it hurts much more so than a regular ride because you sit in the same position for the whole "ride." Now I have spent more than my fair share of rime on the trainer. After all I am an avid enthusiast who cant stand to get out of shape in the winter months so usually around Mid December I start building base miles on the trainer and work up to my first round of intensity traning by early February all on the trainer if weather doesn't permit. But I will bend over backward to ride outdoors even in the winter. I don't mind riding in the cold or the wind. I like riding in the rain but I cant do it everyday. I am usually limited by daylight hours in the winter. But come this time of year, the trainer is put away and I gets my mile on the road.
But then there are those runners, who continue year round, to run on their hamster wheels at home and in the gym as if being outside is a problem. Seeing the wildflowers bloom is a drawback and staring at a wall and having nine inch nails blaring in your ears is the shizzle. I don't get it. What is up with that? Do you not want to be outside because you might sweat. Or because someone might see you? Or you are too tempted by running past the Starbucks? Perhaps because running is so damn boring to begin with, it doesn't really matter if you are staring at a wall or running around your neighborhood.
OK I've lit the fuse let the debate explode. Comment below.
But First: check out this link about How to talk to people who have cancer . Most of what it says is right on the money. I've got to say that insisting that everything is going to be OK is really annoying. It is already way not OK but it is what it is. And unsolicited advice can be really frustrating as well, I cant physically do all of the things that I have been advised to do, there are not enough hours in the day. I love you all and I know that you are well meaning and I would rather have all that than no communication. I know it has got to be really hard to reach out to someone like me because it brings you up against your own fears and discomforts but I appreciate any and all communication. I read all of my email even if I don't reply and if you make a gaff, I wont hold it against you. I love you for trying, that is really what counts.
Now chime in: trainers vs. treadmills, indoor vs. outdoor.
Thanks for reading
I do have lots of friends who are runners some of them very accomplished runners and I have the utmost respect for runners. I am married to one. I do appreciate the simplicity of running. It is the way that the original humans got around when they were in a hurry. You don't really need any special gear and it is ultimately pure as a form of recreation. It just doesn't float my boat.
However it seems to me that runners are more likely to be willing to or even enjoy running indoors on a treadmill while listening to their Ipod. The cycling equivalent of this is riding rollers or a trainer which is a different story all together. Most of the complaints that I have about running, indoors or out, are the same complaints about riding indoors. It is boring, you don't go anywhere and it hurts much more so than a regular ride because you sit in the same position for the whole "ride." Now I have spent more than my fair share of rime on the trainer. After all I am an avid enthusiast who cant stand to get out of shape in the winter months so usually around Mid December I start building base miles on the trainer and work up to my first round of intensity traning by early February all on the trainer if weather doesn't permit. But I will bend over backward to ride outdoors even in the winter. I don't mind riding in the cold or the wind. I like riding in the rain but I cant do it everyday. I am usually limited by daylight hours in the winter. But come this time of year, the trainer is put away and I gets my mile on the road.
But then there are those runners, who continue year round, to run on their hamster wheels at home and in the gym as if being outside is a problem. Seeing the wildflowers bloom is a drawback and staring at a wall and having nine inch nails blaring in your ears is the shizzle. I don't get it. What is up with that? Do you not want to be outside because you might sweat. Or because someone might see you? Or you are too tempted by running past the Starbucks? Perhaps because running is so damn boring to begin with, it doesn't really matter if you are staring at a wall or running around your neighborhood.
OK I've lit the fuse let the debate explode. Comment below.
But First: check out this link about How to talk to people who have cancer . Most of what it says is right on the money. I've got to say that insisting that everything is going to be OK is really annoying. It is already way not OK but it is what it is. And unsolicited advice can be really frustrating as well, I cant physically do all of the things that I have been advised to do, there are not enough hours in the day. I love you all and I know that you are well meaning and I would rather have all that than no communication. I know it has got to be really hard to reach out to someone like me because it brings you up against your own fears and discomforts but I appreciate any and all communication. I read all of my email even if I don't reply and if you make a gaff, I wont hold it against you. I love you for trying, that is really what counts.
Now chime in: trainers vs. treadmills, indoor vs. outdoor.
Thanks for reading
Saturday, April 5, 2008
Getting Past the Sadness
I alluded to the fact that I have not been as prolific a writer lately in my last post. It hasn't been there for me. I realize now that is because I am chewing on some new emotional aspects of my situation. Be careful don't read any farther if you are not ready for some negativity. I think part of it comes from passing the one month mark. Part of it comes from the intense feelings that the Minga brought up for me. Overall I think it is just a new phase in the journey that I am on. It has been a phase of intense, overwhelming sadness. I'll try to relate what it is like here.
I am 41. I have been married to my wife for 18 years and with her for 20. I have two beautiful girls who are 5 and almost 7. I have lived my life as much as I could as though each day were precious and something to be treasured. I have travelled all over running rivers and having adventures. I have sailed far away seas and climbed tall mountains. I have been to places that few other people have been to. I have embodied a commitment to live my life in a way that makes me happy. But I have also lived my life as though I was going to live to be an old man.
Cancer has put an end to that assumption. While none of us really know when we are going to go out, I have had to spend some time contemplating a drastically shortened life. I don't really want to get into the medical aspects of what the survivability of multiple myeloma are, that is not the point. This is about the emotional side of cancer. I've been sitting with the feeling of not having much time left. I am not one to ignore feelings. I know that I have to confront what is going on for me in order to move past it and that has been really hard.
Lets start with the worst case scenario. What if the treatment regimen doesn't work? While this is unlikely it is my biggest fear. So what will happen to me is that I will never get my beautiful athletic body back. Pain will continue to dominate my life my condition will continue to deteriorate until I am sick all the time and then I die. While I fear this, I think it is really unlikely. I don't think it is going to go that way. I don't spend a lot of psychic energy on this fear, but it is there.
Next scenario is different. In this one the treatment works. In a year or so after chemo, a bone marrow transplant, surgery on my hip, I am back on the bike, playing with my kids and post symptom free. The median time for post treatment MM survivors being symptom free according to some statistics is about 3-5 years. So after that sort of time frame I start having symptoms again. I go back into treatment and live in the hell of treatment for some unknown period of time until I die. This is the scenario that haunts me. It is only human nature to want answers to this but the nature of the disease that I have doesn't lend itself to being predictable. And I am a unusual multiple myeloma patient. I have heard stories of MM patients that have gone through the treatment 10 years ago and are still going strong. The part of this that is hard for me is not knowing how long I've got and assuming the worst.
I have been, in my mind, picturing only a year or so of life left and trying to come to terms with that. It has been really hard. The hardest part for me is thinking about not being able to spend much more time with my girls. They are so busy and active right now and I am so feeble that I struggle to connect with them as it is. The thought of not being with them as they grow into young women is really more than I can bear at times. Not being with them for all of those landmarks of growing is so sad for me. I am sad to think that I might not be there to celebrate all of the successes just kills me. To imagine not being there to hold them when they are sad drives me insane with sadness. I am not worried about me. I am worried about what will become of them.
I have spent too much time lately thinking about that. What I have come to realize (all over again) is that I have no control over what is going to happen. Just that act of thinking about all of that is self defeating. I am killing the opportunity to have a good day right now by spending time thinking about what might happen in the future. I thought that I knew better than to go down that road but I found myself yesterday paralyzed with overwhelming sadness. I am definitely snapping out of it now. I realize that the days that I spent stuck in despair are days that I am not going to get back. Yes, it is part of my process to feel all of the feelings. I still will. But I am going to have to be more careful about going down the depression road. It just isn't worth it.
The fact of the matter is that we are all living on a short deadline. At some point we are all going to keel over. That fact is certainly up in my face right now. I am most likely not going to be old and gray with the chickenhawk but I do have today. And I am pretty sure I have tomorrow. And I'll be dammed if I am going to waste any more time. I am going to try really hard to enjoy every moment for the gift that it is.
I am 41. I have been married to my wife for 18 years and with her for 20. I have two beautiful girls who are 5 and almost 7. I have lived my life as much as I could as though each day were precious and something to be treasured. I have travelled all over running rivers and having adventures. I have sailed far away seas and climbed tall mountains. I have been to places that few other people have been to. I have embodied a commitment to live my life in a way that makes me happy. But I have also lived my life as though I was going to live to be an old man.
Cancer has put an end to that assumption. While none of us really know when we are going to go out, I have had to spend some time contemplating a drastically shortened life. I don't really want to get into the medical aspects of what the survivability of multiple myeloma are, that is not the point. This is about the emotional side of cancer. I've been sitting with the feeling of not having much time left. I am not one to ignore feelings. I know that I have to confront what is going on for me in order to move past it and that has been really hard.
Lets start with the worst case scenario. What if the treatment regimen doesn't work? While this is unlikely it is my biggest fear. So what will happen to me is that I will never get my beautiful athletic body back. Pain will continue to dominate my life my condition will continue to deteriorate until I am sick all the time and then I die. While I fear this, I think it is really unlikely. I don't think it is going to go that way. I don't spend a lot of psychic energy on this fear, but it is there.
Next scenario is different. In this one the treatment works. In a year or so after chemo, a bone marrow transplant, surgery on my hip, I am back on the bike, playing with my kids and post symptom free. The median time for post treatment MM survivors being symptom free according to some statistics is about 3-5 years. So after that sort of time frame I start having symptoms again. I go back into treatment and live in the hell of treatment for some unknown period of time until I die. This is the scenario that haunts me. It is only human nature to want answers to this but the nature of the disease that I have doesn't lend itself to being predictable. And I am a unusual multiple myeloma patient. I have heard stories of MM patients that have gone through the treatment 10 years ago and are still going strong. The part of this that is hard for me is not knowing how long I've got and assuming the worst.
I have been, in my mind, picturing only a year or so of life left and trying to come to terms with that. It has been really hard. The hardest part for me is thinking about not being able to spend much more time with my girls. They are so busy and active right now and I am so feeble that I struggle to connect with them as it is. The thought of not being with them as they grow into young women is really more than I can bear at times. Not being with them for all of those landmarks of growing is so sad for me. I am sad to think that I might not be there to celebrate all of the successes just kills me. To imagine not being there to hold them when they are sad drives me insane with sadness. I am not worried about me. I am worried about what will become of them.
I have spent too much time lately thinking about that. What I have come to realize (all over again) is that I have no control over what is going to happen. Just that act of thinking about all of that is self defeating. I am killing the opportunity to have a good day right now by spending time thinking about what might happen in the future. I thought that I knew better than to go down that road but I found myself yesterday paralyzed with overwhelming sadness. I am definitely snapping out of it now. I realize that the days that I spent stuck in despair are days that I am not going to get back. Yes, it is part of my process to feel all of the feelings. I still will. But I am going to have to be more careful about going down the depression road. It just isn't worth it.
The fact of the matter is that we are all living on a short deadline. At some point we are all going to keel over. That fact is certainly up in my face right now. I am most likely not going to be old and gray with the chickenhawk but I do have today. And I am pretty sure I have tomorrow. And I'll be dammed if I am going to waste any more time. I am going to try really hard to enjoy every moment for the gift that it is.
Friday, April 4, 2008
Quick Update
I know I haven't been writing as much as usual. I am not sure why. Maybe I am just not feeling as inspired. We went to the Oncologist yesterday for my monthly checkup. It was not very hopeful. The thing that he is tracking is my plasma cells. Thus far there has not been a very big improvement. That is disappointing news but there are things to consider in there. Plasma cells are the slowest to grow and will be the slowest to react to the treatment. Also, it is really too early to expect a major change or to say that there is a trend.
Going to the oncologist is a stressful event. You never know what the news is going to be and it usually hits like a ton of bricks. We had a busy day scheduled with a trip down to the hospital and then rush back home to pick up the kids. No time to process the harsh news. As a result last night was pretty stressful around the house. Kids screaming, parents yelling and lots of crying. Lesson learned. Next time we go to the oncologist we will schedule the rest of the day away from the kids so we can assimilate then news.
Thank goodness Bill decided to drop by and check on us. He helped put the kids to bed and stayed late chatting and cheering us up.
So in a month we'll go for another checkup. And we'll see where I stand from there.
I am working on another post that I'll try to get out soon.
Take care everyone.
Going to the oncologist is a stressful event. You never know what the news is going to be and it usually hits like a ton of bricks. We had a busy day scheduled with a trip down to the hospital and then rush back home to pick up the kids. No time to process the harsh news. As a result last night was pretty stressful around the house. Kids screaming, parents yelling and lots of crying. Lesson learned. Next time we go to the oncologist we will schedule the rest of the day away from the kids so we can assimilate then news.
Thank goodness Bill decided to drop by and check on us. He helped put the kids to bed and stayed late chatting and cheering us up.
So in a month we'll go for another checkup. And we'll see where I stand from there.
I am working on another post that I'll try to get out soon.
Take care everyone.
Tuesday, April 1, 2008
Minga
Hey There,
The chickenhawk and I just got my Internet connection back on line! It is so good to be back. I had thought about doing a post today (April 1) where I tell everyone that I have been faking all along, that I don't have cancer and I was just taking a couple of months off of work and getting all my friends and neighbors to do all my cooking and house work and my coworkers to do all my work for me. But honestly that just feels too frivolous right now.
The reason that the computer was off line is that on Saturday we had a Minga which is an ancient concept from pre-Inca Times, not different than a barn raising where the community comes together to do a major work project. About 50 people came from as far away as Marin County and Bend OR to help with the work. In four hours more than a year's worth of work got done. A swing set got moved to a newly flattened and terraced spot on our property. An 8'x16" shed got moved via trailer across the property. That allowed for the creation of a garden fence and eventually some raised beds. The volunteers also made two mini patios out of broken up concrete. They deep cleaned the interior of the house including the fridge, windows, toys, all dust bunnies the eaves of the house the gutters.
To say the least the amount of work that got done was amazing! It really is one of those things that you would have to see to believe, but picture 50 people all working in small groups in a focused way on multiple small projects that were in many ways interconnected with the a bigger project. Each of these groups had a leader and then there were a couple of overall project leaders that coordinated with an overall plan. It seemed to me as an observer that each person had a job that they understood and that they were engaged with what they were doing. Everyone seemed to be having fun, joking and laughing, focusing on their work and enjoying the afternoon.
I watched for a while but pretty quickly I became overwhelmed and went and took a nap. When I awoke at 5PM the work was winding down and the party was beginning. Scooter had coordinated the potluck. One thing about a Coloma pot luck is that the food is almost always excellent. This was no exception, chicken, brats, burgers on the BBQ, salads of all types, pasta dishes and of course deserts. And, of course, beer.
The previous day (Friday) was my youngest daughters birthday. Matt and April had made her two amazing "treasure chest" birthday cakes. The kids had spent the day at our next door neighbors house playing in their yard and being watched by a gang of adults and older kids. In the afternoon Tiffany came over with her horse and all of the kids got to go for horse rides! Many folks brought gifts for our daughter and by 7PM she was falling asleep while eating her birthday cake. I think she was just as overwhelmed as I was.
My brother Billy was visiting from Arizona. It was really great to see his reaction to what was happening. It is hard to describe the sense of community that we here in LoCo valley feel for one another but the Minga on Saturday was a great example of it. He was pretty amazed by how many people were here and truly working hard to get a job done. No BS just focusing on getting a job done.
For my part it is hard to describe how I feel. Mostly I feel overwhelmed. With Gratitude. But there is something else. Did you ever see the movie Saving Private Ryan. I think when most people think of that movie they remember the unbridled violence and honest depiction of war. But, do you remember the message of the movie? At the end of the story after many people have been killed in an attempt to save this one guy's life, the squad leader turns to private Ryan and as he is dying tells private Ryan to "earn it, you go forward into your life and you earn it." I don't know how I will earn it. I feel deeply indebted to so many people for helping me and my family out. I feel more than that though.
I feel as if my family has grown. It used to feel like, there way me and the C/H and the kids then the extended family of parents and uncles and cousins and so on. It is different now. Everyone that has stepped up and helped out feels like they have a place in our family and that I would do anything in my power to help any one of them out in any way that I could. Another one of the blessing of cancer.
I want to say thanks here. I know that I am not going to remember everyone and I apologize but here goes.
Billy, Adam, David, Tommy, Terry, Bill, KT, Patrick, Matt B, April, Stuart, Eric and Moira, Bill and Robin, Matt S. and Mary, Barbara, Bikes Gone Wild (yes he was here), Jim and Weston (thanks for being my oldest best friend I love you Jim) , John Luana Elise and Alexis, Patty, Scooter, KD and Judy, Cindy, Tiff, Bobby, Marek, Seth and Noel, Phil, Jen and Randy,
I know I am forgetting you and I apologize, I will add more names as they come to me. It is time for my nap. More soon!
The chickenhawk and I just got my Internet connection back on line! It is so good to be back. I had thought about doing a post today (April 1) where I tell everyone that I have been faking all along, that I don't have cancer and I was just taking a couple of months off of work and getting all my friends and neighbors to do all my cooking and house work and my coworkers to do all my work for me. But honestly that just feels too frivolous right now.
The reason that the computer was off line is that on Saturday we had a Minga which is an ancient concept from pre-Inca Times, not different than a barn raising where the community comes together to do a major work project. About 50 people came from as far away as Marin County and Bend OR to help with the work. In four hours more than a year's worth of work got done. A swing set got moved to a newly flattened and terraced spot on our property. An 8'x16" shed got moved via trailer across the property. That allowed for the creation of a garden fence and eventually some raised beds. The volunteers also made two mini patios out of broken up concrete. They deep cleaned the interior of the house including the fridge, windows, toys, all dust bunnies the eaves of the house the gutters.
To say the least the amount of work that got done was amazing! It really is one of those things that you would have to see to believe, but picture 50 people all working in small groups in a focused way on multiple small projects that were in many ways interconnected with the a bigger project. Each of these groups had a leader and then there were a couple of overall project leaders that coordinated with an overall plan. It seemed to me as an observer that each person had a job that they understood and that they were engaged with what they were doing. Everyone seemed to be having fun, joking and laughing, focusing on their work and enjoying the afternoon.
I watched for a while but pretty quickly I became overwhelmed and went and took a nap. When I awoke at 5PM the work was winding down and the party was beginning. Scooter had coordinated the potluck. One thing about a Coloma pot luck is that the food is almost always excellent. This was no exception, chicken, brats, burgers on the BBQ, salads of all types, pasta dishes and of course deserts. And, of course, beer.
The previous day (Friday) was my youngest daughters birthday. Matt and April had made her two amazing "treasure chest" birthday cakes. The kids had spent the day at our next door neighbors house playing in their yard and being watched by a gang of adults and older kids. In the afternoon Tiffany came over with her horse and all of the kids got to go for horse rides! Many folks brought gifts for our daughter and by 7PM she was falling asleep while eating her birthday cake. I think she was just as overwhelmed as I was.
My brother Billy was visiting from Arizona. It was really great to see his reaction to what was happening. It is hard to describe the sense of community that we here in LoCo valley feel for one another but the Minga on Saturday was a great example of it. He was pretty amazed by how many people were here and truly working hard to get a job done. No BS just focusing on getting a job done.
For my part it is hard to describe how I feel. Mostly I feel overwhelmed. With Gratitude. But there is something else. Did you ever see the movie Saving Private Ryan. I think when most people think of that movie they remember the unbridled violence and honest depiction of war. But, do you remember the message of the movie? At the end of the story after many people have been killed in an attempt to save this one guy's life, the squad leader turns to private Ryan and as he is dying tells private Ryan to "earn it, you go forward into your life and you earn it." I don't know how I will earn it. I feel deeply indebted to so many people for helping me and my family out. I feel more than that though.
I feel as if my family has grown. It used to feel like, there way me and the C/H and the kids then the extended family of parents and uncles and cousins and so on. It is different now. Everyone that has stepped up and helped out feels like they have a place in our family and that I would do anything in my power to help any one of them out in any way that I could. Another one of the blessing of cancer.
I want to say thanks here. I know that I am not going to remember everyone and I apologize but here goes.
Billy, Adam, David, Tommy, Terry, Bill, KT, Patrick, Matt B, April, Stuart, Eric and Moira, Bill and Robin, Matt S. and Mary, Barbara, Bikes Gone Wild (yes he was here), Jim and Weston (thanks for being my oldest best friend I love you Jim) , John Luana Elise and Alexis, Patty, Scooter, KD and Judy, Cindy, Tiff, Bobby, Marek, Seth and Noel, Phil, Jen and Randy,
I know I am forgetting you and I apologize, I will add more names as they come to me. It is time for my nap. More soon!
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