I am thinking a lot about Steph Pope lately. It is just over a year since her memorial. The memorial that I couldn't attend due to my own illness. I guess I am not feeling like I have closure with her and her family the way I would like it to be.
I am also feeling a lot of gratitude to have strength health and energy these days. I had to push myself pretty hard to bust through the fatigue and to do some BASIC exercising and I am feeling much better. The meds I am on are still working and giving mostly bearable side effects.
That is all I have time for. Goodnight
November 28, 2012
March 08, 2012
A few quick Items.
It is a good week and this is just a quick post before I go spend my time outside while the weather is nice.
My Mom sent me this video about a guy who cured cancer with nmarijuana extract. It brought up a conversation between us that I enjoyed.
I am a medical MJ user and can speak directly to its positive effects. Of course now I am only mildly aware of all of the political controversy about legalization etc. but I have my opinions. The advocates of legalization often claim that law enforcement is firmly on the side of criminalization because it gets lots of its funding from anti drug programs. This short article in Mother Jones certainly points that direction.
My Mom sent me this video about a guy who cured cancer with nmarijuana extract. It brought up a conversation between us that I enjoyed.
I am a medical MJ user and can speak directly to its positive effects. Of course now I am only mildly aware of all of the political controversy about legalization etc. but I have my opinions. The advocates of legalization often claim that law enforcement is firmly on the side of criminalization because it gets lots of its funding from anti drug programs. This short article in Mother Jones certainly points that direction.
March 02, 2012
Update
I posted on FB last night but will elaborate in the short time I have before my mystery field trip with David Thomas. Yesterday I had my monthly Oncologist visit. It went well. My Kappa Free Light Chains are 28 down from 34. This is great because it means that the Revlmid is controlling the growth of those bad cells.
I talked with the doc about lowering the dose to a point where I do just a bit less suffering. Ok, I'd settle for a lot less suffering. As a result my new prescription is for 5mg a day which is considered a maintenance dose. I am feeling super hopeful about this change. Perhaps I'll be able to lead a more normal life while on this super low dose.
It is kind of silly but one of the things that I really hope for is that I'll be able to enjoy a beer. With the amount of poison that I take right now, my taste buds have rebelled to the point where beer tastes really bad. Of all the small and big things that this transition might change, my mind just keeps going to beer. Is that a bad sign?
I talked with the doc about lowering the dose to a point where I do just a bit less suffering. Ok, I'd settle for a lot less suffering. As a result my new prescription is for 5mg a day which is considered a maintenance dose. I am feeling super hopeful about this change. Perhaps I'll be able to lead a more normal life while on this super low dose.
February 28, 2012
Roid Rage
Note: I wrote the following on Sunday the 26th at the same time I wrote the last post. Just as the wind blows my mood is different. It is Tuesday night, I am exhausted.
Personally, I am going through a phase of anger and depression that is for me, in many ways unprecidented. My whole life has been about adventure and putting myself in situations that take intese mental and physical focus in order to come out safely. In the old days, before cancer, If the river was too low to paddle, the weather was too rainy to ride, the snow was to thin to snow board or the surf was too low to bother, I would experience a sort of depression. A tensing of the facial muscles, a shortness of attitude, and a longing for better times. When I was able to get out and play, run rapids, descend hills at high speed or something like that, my attitude was visibly more enthusiastic, calm and friendly.
In 2008 during the intense first year of treatment for multiple myeloma, I was able to mostly put that aspect of myself away. Not easily, I was able to tell myself that I had the most intense battle of my life to fight and that in a year, I would be cancer free and back to my old self. All I had to do was keep my attitude good, my head in the fight, endure intense suffering and remain in a place of gratitude and I would come out OK in the end. In hindsight, it was exactly the right thing to do. I nearly died that year on at least one occasion and I credit much of my survival with the attiude I was able to cultivate.
Unfortunatley I was out of neccsity, I was deluding myself. Multiple Myeloma does not go away. It is a blood disorder, necessary cells in your blood grow haywire and cause problems. You can't survive without those cells. The best you can hope for is to have them at a "normal" level and to have no symtoms. I achieved that, for two years. Now I am taking chemo drugs to keep those cells normal.
In all likelyhood, that is what I will keep doing for the rest of my life. The outlook is not great. Between what has already been done to my body and the drugs I take to stay normal, my immunity is depressed, my body's abilty to recover is severly limited.
In 2008 when I made that commitment to go back to my "old self" was sadly impossible. I will never be that guy again-- physically. Mentally, I struggle more and more as the months years go by and my treatments take up more of my energy and time. I am relegated to walking the dog on a 3/4 mile concrete loop with the senior citizens when I am able. I go skateboarding for a half hour when I feel a little bit better a photography hike when I feel good, and kayaking when I feel great. In my mind much of the time I am still the guy that is able to paddle all day everyday or ride 50 miles before 10AM. Gone are the days where I can manage my attitude by doing what I call "getting out."
I have been able to replace my adventureous yearnings with other activities; playing the guitar, gardening, working on cars, doing art. Still it is not the same. None of this demands the extreme meantal focus that shuts out all other aspects of life to the point of meditation where there is nothing but you and the task at hand. That feeling that when I get to be in it leaves me relaxed, elated and with a sense of well being that is unparraleled.
The last few months have been a process of realizing that I can no longer structure my life in pursuit of those moments. Not to say I wont get them, I just can't count on them to keep me sane. I have to find a new way of doing it. I morun the loss. I try hard to go on with out them but I feel like I am living in a greatly diminished world.
Thanks for reading.
Personally, I am going through a phase of anger and depression that is for me, in many ways unprecidented. My whole life has been about adventure and putting myself in situations that take intese mental and physical focus in order to come out safely. In the old days, before cancer, If the river was too low to paddle, the weather was too rainy to ride, the snow was to thin to snow board or the surf was too low to bother, I would experience a sort of depression. A tensing of the facial muscles, a shortness of attitude, and a longing for better times. When I was able to get out and play, run rapids, descend hills at high speed or something like that, my attitude was visibly more enthusiastic, calm and friendly.
In 2008 during the intense first year of treatment for multiple myeloma, I was able to mostly put that aspect of myself away. Not easily, I was able to tell myself that I had the most intense battle of my life to fight and that in a year, I would be cancer free and back to my old self. All I had to do was keep my attitude good, my head in the fight, endure intense suffering and remain in a place of gratitude and I would come out OK in the end. In hindsight, it was exactly the right thing to do. I nearly died that year on at least one occasion and I credit much of my survival with the attiude I was able to cultivate.
Unfortunatley I was out of neccsity, I was deluding myself. Multiple Myeloma does not go away. It is a blood disorder, necessary cells in your blood grow haywire and cause problems. You can't survive without those cells. The best you can hope for is to have them at a "normal" level and to have no symtoms. I achieved that, for two years. Now I am taking chemo drugs to keep those cells normal.
In all likelyhood, that is what I will keep doing for the rest of my life. The outlook is not great. Between what has already been done to my body and the drugs I take to stay normal, my immunity is depressed, my body's abilty to recover is severly limited.
In 2008 when I made that commitment to go back to my "old self" was sadly impossible. I will never be that guy again-- physically. Mentally, I struggle more and more as the months years go by and my treatments take up more of my energy and time. I am relegated to walking the dog on a 3/4 mile concrete loop with the senior citizens when I am able. I go skateboarding for a half hour when I feel a little bit better a photography hike when I feel good, and kayaking when I feel great. In my mind much of the time I am still the guy that is able to paddle all day everyday or ride 50 miles before 10AM. Gone are the days where I can manage my attitude by doing what I call "getting out."
I have been able to replace my adventureous yearnings with other activities; playing the guitar, gardening, working on cars, doing art. Still it is not the same. None of this demands the extreme meantal focus that shuts out all other aspects of life to the point of meditation where there is nothing but you and the task at hand. That feeling that when I get to be in it leaves me relaxed, elated and with a sense of well being that is unparraleled.
The last few months have been a process of realizing that I can no longer structure my life in pursuit of those moments. Not to say I wont get them, I just can't count on them to keep me sane. I have to find a new way of doing it. I morun the loss. I try hard to go on with out them but I feel like I am living in a greatly diminished world.
Thanks for reading.
February 26, 2012
February: a month to forget
Whoa it has been a rough month. It started with a blissed out day of warm January kayaking on the 29th of January. I went with my dear friends Patso, Tim, Terry, Matt and Girl Alex. I was feeling great and at the just at the beginning of a 3 week half-strength chemo round. It was sunny beautiful, I paddled a boat I hard never tried and was loving it. Things felt like they couldn't be better. That didn't last.
That evening I started having flu symptoms and proceeded to be sick with fever, cough, sore throat, congestion, vomiting, fever, you name it, for the next two weeks. While I was sick both girls were down with the bug as well, alternating days home from school and needing attention. To top that off, the Chickenhawk, after 6 weeks of no work started back at CODS full time. We need the money so she despite her mothering instincts ovaried up and worked rather than staying home and nursing her brood.
The good news was that during that time I was never admitted to the hospital, I only went to the ER once for fluids and stabilizing of my fever. For a guy with lowered immunity, that is huge.
The bad news, at the end of two weeks of streaming netflix, lots of fluids and anti-nausea meds, the couch time had taken a toll on my body. When I got up and started moving around my back was spasmed to the max. Back to the couch, a wonderful massage from my dear friend Heather Freer, and I was still in pain. A trip to Kaiser for muscle relaxers and another few days on my back, a trip to the chiropractor and here we are at the end of the month and I am just starting to function again.
My body feels as decondtioned as it has in 3 years since the transplant recovery. My blood pressure is low so the simple act of walking can make me dizzy. I have very low aerobic capacity and my back still hurts when I stand for more than 15 minutes. On top of all this I experience extreme fatigue. Tori Robinson described it as wearing a lead suit all the time. I think it is like living in an atmosphere of peanut butter rather than an oxygen mixture. It is just really hard to move around or get any normal task done.
Last weekend the girls went skiing. They had a great time except Dana was hit by not one but three snowboarders. I think it might have been the target she was wearing on her back. Anyway one of the collisions resulted in a bruised knee and now she is back on her crutches and hopping around the house. This is a condition that puts stress on the whole family. Xrays say no break. Dana says she is in pain and refuses to put weight on her leg, the doc says wait two weeks.
You may notice that my tone in writing this is (I'd like to think) uncharacteristically negative. Well yes, yes it is. I took a break from Revlmid and Dex for a week or so while I was sick, now I am back on. Due to the side effects of the Dexamethasone I am experiencing what I can best describe as roid rage. The Rev / Dex therapy includes a high dose of the steroid once a week. Side effects include sleeplessness, manic behavior, and yes, a really awful attitude. My internal conversation is appalling, I am unkind to myself and extremely judgemental of anyone that gets close. I am downright mean to my kids and often disrespectful to my wife. The best way to describe it is to say that I can hardly stand to be around myself. For 24 hours a day 3 days a week, I am the guy at the party that I would attempt to avoid. The good news is that the fatigue is gone for the three days I take the Dex. The bad news is on Tuesday, when the dex goes out of my system, I will experience extreme fatigue that will slowly improve until it is time to start the cycle all over again.
This month has been quite hard on our family. It has gotten to the point where the chickenhawk and I have started talking about our options; Different treatments for me. No treatment for me. Her stopping working so that she can run the family and house and care take while I do treatment, and the question of what do we do for money if she does that. For now we have decided that we are just adapting to yet another "new normal." For now we'll just tough it out and hope for better health for all. Better numbers in my monthly testing and overall good fortune.
I try hard to stay in a place and attitude of gratitude. It has been particularly challenging lately, nonetheless, I'd like to thank Mary Smith, Terry Anderson, Dave Pope, Traci Sheehan, Margrit Petrovsky, Hillary Mulligan, and Kay Osborne for the fabulous meals. Also thanks to Jen Calvin, Tim Madden, Dave Pope, Julie Stanley, Kary Danielson, Dennis Eagan, and Kenna Foster for both dropping by and spreading good cheer as well as running the occasional errand. Also, last but not least thanks to Tommy Anderson for installing a new toilet when our ancient master bath commode stopped working. The spirit and and attitude of our community never stops amazing me even in the depths of a cold miserable February it is as though a warm light is shining on us. Thanks to all for helping with the burden we have to bear.
Thanks for reading.
That evening I started having flu symptoms and proceeded to be sick with fever, cough, sore throat, congestion, vomiting, fever, you name it, for the next two weeks. While I was sick both girls were down with the bug as well, alternating days home from school and needing attention. To top that off, the Chickenhawk, after 6 weeks of no work started back at CODS full time. We need the money so she despite her mothering instincts ovaried up and worked rather than staying home and nursing her brood.
The good news was that during that time I was never admitted to the hospital, I only went to the ER once for fluids and stabilizing of my fever. For a guy with lowered immunity, that is huge.
The bad news, at the end of two weeks of streaming netflix, lots of fluids and anti-nausea meds, the couch time had taken a toll on my body. When I got up and started moving around my back was spasmed to the max. Back to the couch, a wonderful massage from my dear friend Heather Freer, and I was still in pain. A trip to Kaiser for muscle relaxers and another few days on my back, a trip to the chiropractor and here we are at the end of the month and I am just starting to function again.
My body feels as decondtioned as it has in 3 years since the transplant recovery. My blood pressure is low so the simple act of walking can make me dizzy. I have very low aerobic capacity and my back still hurts when I stand for more than 15 minutes. On top of all this I experience extreme fatigue. Tori Robinson described it as wearing a lead suit all the time. I think it is like living in an atmosphere of peanut butter rather than an oxygen mixture. It is just really hard to move around or get any normal task done.
Last weekend the girls went skiing. They had a great time except Dana was hit by not one but three snowboarders. I think it might have been the target she was wearing on her back. Anyway one of the collisions resulted in a bruised knee and now she is back on her crutches and hopping around the house. This is a condition that puts stress on the whole family. Xrays say no break. Dana says she is in pain and refuses to put weight on her leg, the doc says wait two weeks.
You may notice that my tone in writing this is (I'd like to think) uncharacteristically negative. Well yes, yes it is. I took a break from Revlmid and Dex for a week or so while I was sick, now I am back on. Due to the side effects of the Dexamethasone I am experiencing what I can best describe as roid rage. The Rev / Dex therapy includes a high dose of the steroid once a week. Side effects include sleeplessness, manic behavior, and yes, a really awful attitude. My internal conversation is appalling, I am unkind to myself and extremely judgemental of anyone that gets close. I am downright mean to my kids and often disrespectful to my wife. The best way to describe it is to say that I can hardly stand to be around myself. For 24 hours a day 3 days a week, I am the guy at the party that I would attempt to avoid. The good news is that the fatigue is gone for the three days I take the Dex. The bad news is on Tuesday, when the dex goes out of my system, I will experience extreme fatigue that will slowly improve until it is time to start the cycle all over again.
This month has been quite hard on our family. It has gotten to the point where the chickenhawk and I have started talking about our options; Different treatments for me. No treatment for me. Her stopping working so that she can run the family and house and care take while I do treatment, and the question of what do we do for money if she does that. For now we have decided that we are just adapting to yet another "new normal." For now we'll just tough it out and hope for better health for all. Better numbers in my monthly testing and overall good fortune.
I try hard to stay in a place and attitude of gratitude. It has been particularly challenging lately, nonetheless, I'd like to thank Mary Smith, Terry Anderson, Dave Pope, Traci Sheehan, Margrit Petrovsky, Hillary Mulligan, and Kay Osborne for the fabulous meals. Also thanks to Jen Calvin, Tim Madden, Dave Pope, Julie Stanley, Kary Danielson, Dennis Eagan, and Kenna Foster for both dropping by and spreading good cheer as well as running the occasional errand. Also, last but not least thanks to Tommy Anderson for installing a new toilet when our ancient master bath commode stopped working. The spirit and and attitude of our community never stops amazing me even in the depths of a cold miserable February it is as though a warm light is shining on us. Thanks to all for helping with the burden we have to bear.
Thanks for reading.
January 28, 2012
Shoulds
All right sitting at the computer writing. The problem is not having nothing to write about but rather too much and not enough time and energy. The dexamethazone that I have been taking on the weekends as part of my therapy jacks me up and fills my mind with so many thoughts: It makes me manic and fills my mind with "shoulds." ChichkenHawk and I refer to that as "shoulding on yourself." Just like another SH word.
Things I "should" do: Start a business, start a non profit, learn to play the guitar better, workout, plan another big adventure, more yoga, photography, enlarge my garden, write more, more housework, blah blahy blah, the list goes on and I get sick of it. I spend a couple of caffeine fueled hours every morning banging around the house before I fatigue hits and I have a 15 minute warning before narcolepsy sets in. Then I am out from 15 minutes to 3 hours. People say, "oh how nice I wish I could take a nap like that every day." Yeah well, I wish I had the choice to knock off more of those shoulds. I do try to practice acceptance but this is one of the big challenges for me. As a cancer patient in treatment and a dad who contributes to his family there is a lot of "have" to do items. Don't get me wrong, I am really happy with my new treatment regime, it is the best chemo I have ever taken, I am able to function really well. I take the kids to school every morning and have some time to myself before I spend the afternoons with them. Next week ChickenHawk starts full time work that will take her through early June. I'll be more "on" than before and I am sure I am going to be challenged by that. I am worried about all the effort that it takes to raise the kids while also taking the time I need to be fatigued. In there will be the shoulds driving me nuts. Build a chicken coop, make chile verde, do more painting, make foam boaters for my friends. Enough to drive me nuts. October 28, 2011
Refelctions on Choices and Worst Case Scenarios
The last week has been rough. I can barely stand myself half the time and the other half I am sleeping. I am angry at the poison that I put into my body every day. The good news is today is the last day for this round and then I get a break. Seven days of no revlimid or dex. Just enough time to start feeling sort of normal... for the level of toxins in body to decrease.
It is a beautiful morning. Just after the CH left with the kids I went out and cruised around the valley. There is a haze that settles in on these cold mornings. A fog that hovers over the river and whisps up into the sky. Somewhere someone is burning a slash pile and somewhere else the USFS is doing a controlled burn. The haze is a mixture of the fog and the smoke. I went down to the river and watched the yellow orange tinted low angle light coming over the ridge reflect so many shades on the riffles at the head of the rapids. The spot where the pool goes from being glassy to micro standing waves flowing into the turbulence of the rapid. The cottonwoods reflected yellow and green against the gray glassy water. I celebrated the ability to get out and enjoy.
So much sadness. The fall is always hard for me. Time to go back to school. No more surf trunks and flip flops, carefree playing in the refreshing icy cold water. Throw in friends dying, and chemo poisoning and it is enough to make anyone blue. I need somewhere to focus my anger.
I saw some friends at the bakery when I stopped by. They are also out enjoying the morning. Not enough time to talk about the sadness we all feel. A look is enough to acknowledge it.
We talked about choices. How hard should I work? When should I work? What is best for my body? My point of view seems to reflective of the times we are in; The American Fall. A time when people protesting inequality are being met with resistance from above and state sponsored violence. In 2003 I was strongly considering joining the masses that I saw accruing wealth through "real estate investment." I was in a great position to take advantage of the opportunities. Every time I looked at it I saw a down side that I couldn't quite commit to. What if the bottom falls out? It just did in the late 90's and the experts said, "no one could have predicted." Now it seemed wealth was building up all over again.
Do I get involved? work harder? I was really enjoying my young family and very jealous of the time that I spent on my bike working out my legs and soothing my soul. "I have enough," I thought. A warm home, health insurance and I am starting to save for old age. Why make choices that will make my life busier, more complex and thereby more stressful? I would revisit that question many times with myself and my clients over the next five years.
My bottom line question became, what is the worst case scenario? and if it comes true will I be ready for it?
As I became sick the air started to leak out of the bubble. When I lay in my bed in the ICU also during the fall, I watched CNN. I watched the experts predicting depression beyond the one that my grandparents lived through.. I struggled to recover that winter as our feeble government and the money people that control them tried to keep from going over the falls. I listened to the experts say, "no one could have predicted this."
I am done listening to the experts. Here is my prediction: Oil is becoming more scarce. We are in the middle of a financial meltdown that is energy dependant. Over the next couple of decades our way of life is going to change dramatically. Every facet of modern life will be different, driven by high cost of energy. America will experience something beyond a great depression. Food as we currently consume it will become scarce. People will starve and obesity will become a thing of the past. Travel will consist of walking, bike riding, sailing, horseback and river travel. Small rural communities with access to water, land and soil will struggle, adapt and survive. Cities and suburbs will become empty monuments to our unwavering tendencies towards easy choices. Delivering supplies to them will be considered impractical. Scraps of plastic that we now throw on the ground or recycle will become valuable containers to be reused. Internal combustion engines will be valuable as labor savers but we will use a different metric when we decide utilize them. Agricultural, medical and basic engineering skills will be far more valuable than business degrees of those who are currently occupying the ivory towers.
Why should I not believe this? We as a culture have been faced with tough choices for as long as I can remember. As long as I can remember we have taken the easy choices. Paper or plastic? Long commute for a few bucks more? Would you like to super size that? Don't you deserve it? Apples with blemishes? My kids wont eat it. Have today. Pay tomorrow.
Half of our political structure is bent on denying anything I am predicting. They are lying and cheating to hide it. The other half is sticking their heads in the sand.
Whatever. Get mad at me, call me a freak and impune my motives.
I have a minuscule 1/2 acre somewhere in the foothills. I go out in the morning and watch the colors on the river. I spend as much time as I can with my family making memories. My health is dependent on the system as it is. I need modern medicine to keep me alive. When it goes down I will be dead. The question to me is what will I leave behind for my family and my community? What is the worst case scenario?
Thanks for reading.
It is a beautiful morning. Just after the CH left with the kids I went out and cruised around the valley. There is a haze that settles in on these cold mornings. A fog that hovers over the river and whisps up into the sky. Somewhere someone is burning a slash pile and somewhere else the USFS is doing a controlled burn. The haze is a mixture of the fog and the smoke. I went down to the river and watched the yellow orange tinted low angle light coming over the ridge reflect so many shades on the riffles at the head of the rapids. The spot where the pool goes from being glassy to micro standing waves flowing into the turbulence of the rapid. The cottonwoods reflected yellow and green against the gray glassy water. I celebrated the ability to get out and enjoy.
So much sadness. The fall is always hard for me. Time to go back to school. No more surf trunks and flip flops, carefree playing in the refreshing icy cold water. Throw in friends dying, and chemo poisoning and it is enough to make anyone blue. I need somewhere to focus my anger.
I saw some friends at the bakery when I stopped by. They are also out enjoying the morning. Not enough time to talk about the sadness we all feel. A look is enough to acknowledge it.
We talked about choices. How hard should I work? When should I work? What is best for my body? My point of view seems to reflective of the times we are in; The American Fall. A time when people protesting inequality are being met with resistance from above and state sponsored violence. In 2003 I was strongly considering joining the masses that I saw accruing wealth through "real estate investment." I was in a great position to take advantage of the opportunities. Every time I looked at it I saw a down side that I couldn't quite commit to. What if the bottom falls out? It just did in the late 90's and the experts said, "no one could have predicted." Now it seemed wealth was building up all over again.
Do I get involved? work harder? I was really enjoying my young family and very jealous of the time that I spent on my bike working out my legs and soothing my soul. "I have enough," I thought. A warm home, health insurance and I am starting to save for old age. Why make choices that will make my life busier, more complex and thereby more stressful? I would revisit that question many times with myself and my clients over the next five years.
My bottom line question became, what is the worst case scenario? and if it comes true will I be ready for it?
As I became sick the air started to leak out of the bubble. When I lay in my bed in the ICU also during the fall, I watched CNN. I watched the experts predicting depression beyond the one that my grandparents lived through.. I struggled to recover that winter as our feeble government and the money people that control them tried to keep from going over the falls. I listened to the experts say, "no one could have predicted this."
I am done listening to the experts. Here is my prediction: Oil is becoming more scarce. We are in the middle of a financial meltdown that is energy dependant. Over the next couple of decades our way of life is going to change dramatically. Every facet of modern life will be different, driven by high cost of energy. America will experience something beyond a great depression. Food as we currently consume it will become scarce. People will starve and obesity will become a thing of the past. Travel will consist of walking, bike riding, sailing, horseback and river travel. Small rural communities with access to water, land and soil will struggle, adapt and survive. Cities and suburbs will become empty monuments to our unwavering tendencies towards easy choices. Delivering supplies to them will be considered impractical. Scraps of plastic that we now throw on the ground or recycle will become valuable containers to be reused. Internal combustion engines will be valuable as labor savers but we will use a different metric when we decide utilize them. Agricultural, medical and basic engineering skills will be far more valuable than business degrees of those who are currently occupying the ivory towers.
Why should I not believe this? We as a culture have been faced with tough choices for as long as I can remember. As long as I can remember we have taken the easy choices. Paper or plastic? Long commute for a few bucks more? Would you like to super size that? Don't you deserve it? Apples with blemishes? My kids wont eat it. Have today. Pay tomorrow.
Half of our political structure is bent on denying anything I am predicting. They are lying and cheating to hide it. The other half is sticking their heads in the sand.
Whatever. Get mad at me, call me a freak and impune my motives.
I have a minuscule 1/2 acre somewhere in the foothills. I go out in the morning and watch the colors on the river. I spend as much time as I can with my family making memories. My health is dependent on the system as it is. I need modern medicine to keep me alive. When it goes down I will be dead. The question to me is what will I leave behind for my family and my community? What is the worst case scenario?
Thanks for reading.
October 26, 2011
Whatevah
Okay, this is my attempt to write myself out of the hole that I am residing in. I am stuck in my post weekend steroid low. I slept most of the day yesterday as well as both previous nights. I feel like rip van winkle. Fatigue is not being able to walk by a chair or a bed without sitting or lying down. Once down it could be hours until I get up again. For now I am sitting behind my new 23" computer monitor taping away on my new wireless keyboard. Ergonomics. The lap top has been killing me.
Yesterday I had a couple of visitors. Denny came by to do Yoga but I was asleep. Monte came by to talk tent trailer (more about that later) and Kay brought a beautiful dinner that we'll eat tonight. Bill and KT came to make dinner. It was great to wake up with them and hang out. Tim came and did homework with Dana while the CH got to make her famous pumpkin rolls.
As for what happened during the day.... I am not sure.
This is the place that is hardest for me. It is just totally frustrating to want to do but not be able. It is a constant theme in my process. I am re-learning when to push myself and when to go easy. When to go for a walk and when to just lie on the couch. When the pains in my legs are related to chemo and a sign of danger and when I just need to do yoga. Should I work on the business of my family that feels so important and imperative and when should I just sit on the patio and watch the leaves fall. The lessons that I learned as a road biker in how to suffer with grace serve me well when there is no question that it is time to suffer. It is the times when I feel borderline that I do not trust myself to make good decisions about how hard to push.
Alright. feeling a bit better. Writing helps.
Yesterday I had a couple of visitors. Denny came by to do Yoga but I was asleep. Monte came by to talk tent trailer (more about that later) and Kay brought a beautiful dinner that we'll eat tonight. Bill and KT came to make dinner. It was great to wake up with them and hang out. Tim came and did homework with Dana while the CH got to make her famous pumpkin rolls.
As for what happened during the day.... I am not sure.
This is the place that is hardest for me. It is just totally frustrating to want to do but not be able. It is a constant theme in my process. I am re-learning when to push myself and when to go easy. When to go for a walk and when to just lie on the couch. When the pains in my legs are related to chemo and a sign of danger and when I just need to do yoga. Should I work on the business of my family that feels so important and imperative and when should I just sit on the patio and watch the leaves fall. The lessons that I learned as a road biker in how to suffer with grace serve me well when there is no question that it is time to suffer. It is the times when I feel borderline that I do not trust myself to make good decisions about how hard to push.
Alright. feeling a bit better. Writing helps.
October 23, 2011
For Stephanie Chapman Pope
In the meadow last night after sunset a warm breeze blew against my skin. I felt you then. At the campfire with friends and in the house your spirit moved around whirling in the heat raising to the sky, with the heat from the fire and feelings of love and camraderie that surrounded. Live oak clad hills shilloueted against a palate of darkenss and, hummingbirds' pinprick holes. Below a steely black river flows towards its peaceful destination.
October 18, 2011
Whats the Dealio
I get this question alot. I will make it easy as I can. I am taking Revlmid an oral Chemo Agent related to thalidomide an agent that caused many birth defects in the 1950s when it was given to women as a cure for pregnancy induced nausea. It is a mild poision that happens to kill the bad stuff in me.
I am currently 1.5 weeks into my 2nd course. It is a pill. I take it daily for 21 days then take a week off. On the first seventh and 14th day of a 21 day course I also take dexamethazone. That is a largish steroid dose that makes me feel amped manic and then I crash after a day or two of sleepless mania. As of this writing I am currently at about that phase.
I have kappa free light chain Multiple Myeloma. There are other types. You can google the rest if you want. Here are the basics. When I was diagnosed in 2008 I was feeling sick, tired and in so much pain that I couldn't walk without aid. I was taking tylenol and eating pot brownies like a chocolate loving stoner bent on dying from obesity. Once I was diagnosed I went to the heavier stuff and the rest is history...
...OK the above was written just prior to the Tuesday crash. I just came back to life after sleeping all day and am ready to finish up this post. It is getting predictable that on Tuesday I am going to feel awful and sleep all day. It is rough to go from manic and somewhat energetic to sleeping all day. It is super frustrating to not be able to get anything done. Hopefully tomorrow will be better. Chickenhawk mobile needs new tires I think I'll attempt a Folsom run.
I awoke from the fog today at about 4:30. just in time to meet the Coloma boys at the Brick Oven. I eat pizza and watch them drink beer. Chemo and alcohol just don't mix. It is great to go out. I am constantly amazed and blessed by the wonderful friendships I have developed in this community. It has been a long time since I have written about it. I will soon but for now: moderation is the name of the game. Time to step away from the glowing screen. Spend some time with the CH watching House season 17.
Thanks for reading
I am currently 1.5 weeks into my 2nd course. It is a pill. I take it daily for 21 days then take a week off. On the first seventh and 14th day of a 21 day course I also take dexamethazone. That is a largish steroid dose that makes me feel amped manic and then I crash after a day or two of sleepless mania. As of this writing I am currently at about that phase.
I have kappa free light chain Multiple Myeloma. There are other types. You can google the rest if you want. Here are the basics. When I was diagnosed in 2008 I was feeling sick, tired and in so much pain that I couldn't walk without aid. I was taking tylenol and eating pot brownies like a chocolate loving stoner bent on dying from obesity. Once I was diagnosed I went to the heavier stuff and the rest is history...
...OK the above was written just prior to the Tuesday crash. I just came back to life after sleeping all day and am ready to finish up this post. It is getting predictable that on Tuesday I am going to feel awful and sleep all day. It is rough to go from manic and somewhat energetic to sleeping all day. It is super frustrating to not be able to get anything done. Hopefully tomorrow will be better. Chickenhawk mobile needs new tires I think I'll attempt a Folsom run.
I awoke from the fog today at about 4:30. just in time to meet the Coloma boys at the Brick Oven. I eat pizza and watch them drink beer. Chemo and alcohol just don't mix. It is great to go out. I am constantly amazed and blessed by the wonderful friendships I have developed in this community. It has been a long time since I have written about it. I will soon but for now: moderation is the name of the game. Time to step away from the glowing screen. Spend some time with the CH watching House season 17.
Thanks for reading
October 15, 2011
When the Going Gets Tough, the Tough Make Grape Jelly
Sarah aka the chickenhawk has a really tough job. She has to manage me when I am chemo since I am at times (much) unable to do anything but what I feel like doing. This week it was trimming my medical marijuana harvest and smoking lots of pot. Intermixed with going to the hospital for a couple of days to get fluid back in my dehydrated dihareal and otherwise afflicted body. The boring list goes on of minor complaints. My moods swing like Count Basie, Frank Sinatra and and lord Kieth Richard the IV (pronounced eye vee). It depends on the day of the week, and the moment of the day.
Let us not forget that we are 6 weeks into the remodel that was dumped in our lap like a basket of lemons due to a flood on memorial day weekend. The work is all but done and we now have to work on getting everyone paid and moving what seems like every little piece of clothing, funriture, knick nacks, junk, etc. etc. etc.... back into its new place in the house. The upsides are fantastic new tile in parts, bamboo floor in the master bedroom.
Currently I am manic like a like an under exercised dog at a Frisbee throwing contest. That mood started at 2;30 this afternoon when Dave P brought over a dose of dexamethazone so I could stay on my treatment plan. I was supposed to have gotten my own from kaiser but ended up being busy with more pressing issues this week and found myself without this AM. Luckily Stef has a pretty hefty war chest of Rx meds and was able to share saving me another last minute weekend freak out trip to the kaiser pharmacy. That is a bunch of phone calls and an hour drive to roseville and sitting in a line. Now that I've got dex on board that wouldn't be a problem. It is 10:40 and I am not going to go to sleep at any time in the near future without the help of some serious Over the counter pharmaceuticals.
The chickenhawk did not work this week. It was too much. Perhaps the fact that she looked, hard, for a teaching position this summer and fall to no avail is a blessing in disguise. Yes, money is tight, holding the family together in a time of stress is more important than $15 at CODS.
I have always been someone to get what I want. Most of my life money has been abundant. I would say that I am a money magnet. That was what I discovered when I got my relationship with dollars straight. I learned alot about that realtionship by looking at how other people related to money and emulating those that had relations with money that I admired. To name a few: Matt Sundermier, Lisa Parks, Lars Holbek, Mark Kocina, Randy Calvin, Tommy and Terry Anderson and Doug Stadler among others. It is all about a balance between doing what you love for the amount of money that you need to enjoy life. That, a good brain a shred of motivation, a mild willingness to do the things that you don't like to do occasionally and some good old fashioned white-male-with-an-education-grown-up-in-an-affluent-community-opportunities-and-relationships aka wmwaeguiacoar aka the acronym I will never use again.
So much to do. I have wanted to call and talk to or email so many friends and let them know. I am OK. I am doing a hard job. Chemo is my full time occupation right now. It is a 24-7 job and I am often too slammed to talk to all of my dear friends that are so important to me. I have yet to make this blog's resurrection public. Why? Shut the fuck up is why. I am writing for me. If you don't like it don't read it. It may be self agrandizing or the posts might not be frequent, If I am feeling good I will probably blow it off for things that involve being outside, adventuring and otherwise making the precious memories. While I still can.
So much cancer in the community. Poor Stef, I can imagine what she is going through. I feel as though I have a fairly unique sympathy for her predicament. I can honestly say I would have quit, I would have gotten off the bike and started walking. When the walking gets to painful I will sit down and die. The chickenhawk says that I am going to go with my skateshoes or my wetsuit booties on. I can emphatically say that the last place on earth that I want to be in my life is not in a hospital or in a hospital bed. That will be when I go. That is a topic for another post.
Tori, you are filled with bravery. Your motivation, focus and life's training have set you up for your challenges like no one else I can imagine. I wouldn't wish cancer on Dick Cheney (ok maybe him) but you are the most suited to the job at hand more than anyone I know. I have seen you locked into a turn at 50 MPH passing the fastest descenders I know on the outside of a 30 MPH blind turn like the professional speed demon that you are. That is when you are at your best. Train your weaknesses too, I wish you clarity, tranquility, and comfort while you kill this dragon.
To the friends and fans of the chickenhawk, I say when you see her doing good, tell her. Like the cartoon chickenhawk, she does well with positive reinforcement. She has a really really hard job. She likes high quality dark chocolate, easily prepared meals in disposable containers, homemade baked goods, fruit for making Jams jellies and preserves, red wine, trips out hiking, biking, SUPing, trader joe's. Her dislikes include snot, whining, house remodels, negative feedback and asking for help.
Me, I've got my body and my spirit, my wonderful little family, my extended family and community, good food and a comfortable home in one of the most beautiful places on earth. The things I want for are mostly material illusions. I have you dear reader. Thank you.
Let us not forget that we are 6 weeks into the remodel that was dumped in our lap like a basket of lemons due to a flood on memorial day weekend. The work is all but done and we now have to work on getting everyone paid and moving what seems like every little piece of clothing, funriture, knick nacks, junk, etc. etc. etc.... back into its new place in the house. The upsides are fantastic new tile in parts, bamboo floor in the master bedroom.
Currently I am manic like a like an under exercised dog at a Frisbee throwing contest. That mood started at 2;30 this afternoon when Dave P brought over a dose of dexamethazone so I could stay on my treatment plan. I was supposed to have gotten my own from kaiser but ended up being busy with more pressing issues this week and found myself without this AM. Luckily Stef has a pretty hefty war chest of Rx meds and was able to share saving me another last minute weekend freak out trip to the kaiser pharmacy. That is a bunch of phone calls and an hour drive to roseville and sitting in a line. Now that I've got dex on board that wouldn't be a problem. It is 10:40 and I am not going to go to sleep at any time in the near future without the help of some serious Over the counter pharmaceuticals.
The chickenhawk did not work this week. It was too much. Perhaps the fact that she looked, hard, for a teaching position this summer and fall to no avail is a blessing in disguise. Yes, money is tight, holding the family together in a time of stress is more important than $15 at CODS.
I have always been someone to get what I want. Most of my life money has been abundant. I would say that I am a money magnet. That was what I discovered when I got my relationship with dollars straight. I learned alot about that realtionship by looking at how other people related to money and emulating those that had relations with money that I admired. To name a few: Matt Sundermier, Lisa Parks, Lars Holbek, Mark Kocina, Randy Calvin, Tommy and Terry Anderson and Doug Stadler among others. It is all about a balance between doing what you love for the amount of money that you need to enjoy life. That, a good brain a shred of motivation, a mild willingness to do the things that you don't like to do occasionally and some good old fashioned white-male-with-an-education-grown-up-in-an-affluent-community-opportunities-and-relationships aka wmwaeguiacoar aka the acronym I will never use again.
So much to do. I have wanted to call and talk to or email so many friends and let them know. I am OK. I am doing a hard job. Chemo is my full time occupation right now. It is a 24-7 job and I am often too slammed to talk to all of my dear friends that are so important to me. I have yet to make this blog's resurrection public. Why? Shut the fuck up is why. I am writing for me. If you don't like it don't read it. It may be self agrandizing or the posts might not be frequent, If I am feeling good I will probably blow it off for things that involve being outside, adventuring and otherwise making the precious memories. While I still can.
So much cancer in the community. Poor Stef, I can imagine what she is going through. I feel as though I have a fairly unique sympathy for her predicament. I can honestly say I would have quit, I would have gotten off the bike and started walking. When the walking gets to painful I will sit down and die. The chickenhawk says that I am going to go with my skateshoes or my wetsuit booties on. I can emphatically say that the last place on earth that I want to be in my life is not in a hospital or in a hospital bed. That will be when I go. That is a topic for another post.
Tori, you are filled with bravery. Your motivation, focus and life's training have set you up for your challenges like no one else I can imagine. I wouldn't wish cancer on Dick Cheney (ok maybe him) but you are the most suited to the job at hand more than anyone I know. I have seen you locked into a turn at 50 MPH passing the fastest descenders I know on the outside of a 30 MPH blind turn like the professional speed demon that you are. That is when you are at your best. Train your weaknesses too, I wish you clarity, tranquility, and comfort while you kill this dragon.
To the friends and fans of the chickenhawk, I say when you see her doing good, tell her. Like the cartoon chickenhawk, she does well with positive reinforcement. She has a really really hard job. She likes high quality dark chocolate, easily prepared meals in disposable containers, homemade baked goods, fruit for making Jams jellies and preserves, red wine, trips out hiking, biking, SUPing, trader joe's. Her dislikes include snot, whining, house remodels, negative feedback and asking for help.
Me, I've got my body and my spirit, my wonderful little family, my extended family and community, good food and a comfortable home in one of the most beautiful places on earth. The things I want for are mostly material illusions. I have you dear reader. Thank you.
October 06, 2011
Remodel
Did I mention that my house is under re-construction after the flood that occurred on 2 of September. I have spent much of my time in the last month dealing with the consequences of a broken clothes washer line. We have had floor torn out, holes put in walls, tile installed ,bamboo floors and this next week carpet. Tommy A has been here for the last 2 weeks or so. I really enjoy working with him and having him and Mario around and that is the consolation.
Did I mention yet that at the same time I am doing chemo?
Actually this week I have had off of the drugs and it has been great. I have has mostly normal energy. The pain from the irridia has faded and I am feeling strong and mostly lucid.
Did I mention that Chickenhawk Sarah is dealing with all this as well and working at the same time? She deserves all the chocolate and wine she wants. Perfect neighbor the quiche queen brought dinner over again tonight. Right at 5 when I was wondering what I was going to make and how I was going to find the energy to make it. It is easy to stay in gratitude when so many people are kind to us.
It has been a very social week. I took my dear friend KD and his friend Kate to the Amtrak so they could begin their journey to Nepal. I am really excited for them. By now they have been in Kathmandu for a day or two and recovered (hopefully) from the travel. I am sad because when KD returns he is going to live in Truckee for the winter. I am going to miss him.
Did I mention that I have not yet gone live with this blog. I am not sure what I am waiting for. I think I am still figuring out what it (the blog) is about.
Ahh. there is a good writing assignment. Too tired to continue now. Next time. Big day tomorrow. Massage, doctor visit, trip to Nevada City with friends for live talk and music. Saturday is back to my job; poisoning myself for my own good and the good of my family. Sure has been a nice break.
Thanks for reading
Did I mention yet that at the same time I am doing chemo?
Actually this week I have had off of the drugs and it has been great. I have has mostly normal energy. The pain from the irridia has faded and I am feeling strong and mostly lucid.
Did I mention that Chickenhawk Sarah is dealing with all this as well and working at the same time? She deserves all the chocolate and wine she wants. Perfect neighbor the quiche queen brought dinner over again tonight. Right at 5 when I was wondering what I was going to make and how I was going to find the energy to make it. It is easy to stay in gratitude when so many people are kind to us.
It has been a very social week. I took my dear friend KD and his friend Kate to the Amtrak so they could begin their journey to Nepal. I am really excited for them. By now they have been in Kathmandu for a day or two and recovered (hopefully) from the travel. I am sad because when KD returns he is going to live in Truckee for the winter. I am going to miss him.
Did I mention that I have not yet gone live with this blog. I am not sure what I am waiting for. I think I am still figuring out what it (the blog) is about.
Ahh. there is a good writing assignment. Too tired to continue now. Next time. Big day tomorrow. Massage, doctor visit, trip to Nevada City with friends for live talk and music. Saturday is back to my job; poisoning myself for my own good and the good of my family. Sure has been a nice break.
Thanks for reading
October 02, 2011
Wow, yesterday was a little slice of hell. I had an Irridia (sp?) infusion on Thursday. Thanks to Phil B. for taking me to Roseville. The med is a bone strengthener. Yesterday I had nasty pain all day. The Chickenhawk led a hike for ARC in the morning and the girls went with her. I was by myself most of the day. I did a bunch of work around the house and had to keep stopping to just deal with the pain. I got through it without going to opiates for relief and I feel a bit better today but I am not all the way up to par. Nausea seems to have supsided.
I woke up today excited about the tent trailer rebuild. I am gonna do some more research on modifications before I start. My goal is to get it to be a really soild (off road capable) semi self contained base camp that carries all the necessary toys.
Talked to brother Billy yesterday. He is always more perceptive of other people than me.
I imagine that at some point my writing will be poignant. Right now I will keep working on daily posts.
I woke up today excited about the tent trailer rebuild. I am gonna do some more research on modifications before I start. My goal is to get it to be a really soild (off road capable) semi self contained base camp that carries all the necessary toys.
Talked to brother Billy yesterday. He is always more perceptive of other people than me.
I imagine that at some point my writing will be poignant. Right now I will keep working on daily posts.
October 01, 2011
Alright, down to business. Writing. It is going to be a good thing. I have been avoiding writing because I feel like I have more to write about than ability to sit and write. I am still trying to balance my life between parenting, being a patient, a husband and a community member.
Today is the first day of not taking revlmid for 21 days. I was manic as hell before starting this course. There was so much I wanted to get done. I hope to write about all of it, if I can stay focused, and balanced long enough to do so. The course of revlimd has been rough like a long long day of class III boating, my body is tired. I need to stretch out and take a rest. I am really looking forward to a break. I am hoping that by the end of the 7 day break that drinking a beer might taste good again. I am hoping that during the break I might feel good enough to get a project or two moving or finished.
Here is my list in no particular order:
Today is the first day of not taking revlmid for 21 days. I was manic as hell before starting this course. There was so much I wanted to get done. I hope to write about all of it, if I can stay focused, and balanced long enough to do so. The course of revlimd has been rough like a long long day of class III boating, my body is tired. I need to stretch out and take a rest. I am really looking forward to a break. I am hoping that by the end of the 7 day break that drinking a beer might taste good again. I am hoping that during the break I might feel good enough to get a project or two moving or finished.
Here is my list in no particular order:
- work on the non profit
- rebuild my tent trailer
- fall harvest
- fall camping with the family
- SUP training
We'll see how much I can do. The last 21 days has been a real learning process and I am ready for the next stage. OK that's all I've got in me for now.
February 03, 2011
It Sucks to be Me (sometimes)
I am feeling the need to complain. In the last 3 weeks I have been plagued with diarrhea that knocked me down for a couple of days, a few days of feeling good then a fever and headache, then a gnarly chest cold. So far, I have not had to go to the hospital to recover, which is good news. It seems that about half of the ailments that come my way require a trip to the big house to help with fluids and antibiotics or whatever... I am complaining because on top of my every day fatigue and persistent neuropathy and a fried memory and cognitive abilities, I have a weakend immunity that is an almost constant drag.
It seems to be the theme of my life, getting used to the post cancer me. My memory is so bad that I cant remember how many silly things that I have forgot in the last week. How many appointments I have shown up for a week early or a week late. I am trying to strike a balance between frustration and just being OK with what I have become. The frustration leads to action towards improving myself. At the same time I don't want to get into a cycle of self loathing. It is a balance.
I am the luckiest guy I know. I have been given a second chance to live my life. To be with my family. To explore the world and go on new adventures. I am really happy to be here. Part of the adventure is figuring out who I am all over again.
I am feeling the need to complain. In the last 3 weeks I have been plagued with diarrhea that knocked me down for a couple of days, a few days of feeling good then a fever and headache, then a gnarly chest cold. So far, I have not had to go to the hospital to recover, which is good news. It seems that about half of the ailments that come my way require a trip to the big house to help with fluids and antibiotics or whatever... I am complaining because on top of my every day fatigue and persistent neuropathy and a fried memory and cognitive abilities, I have a weakend immunity that is an almost constant drag.
It seems to be the theme of my life, getting used to the post cancer me. My memory is so bad that I cant remember how many silly things that I have forgot in the last week. How many appointments I have shown up for a week early or a week late. I am trying to strike a balance between frustration and just being OK with what I have become. The frustration leads to action towards improving myself. At the same time I don't want to get into a cycle of self loathing. It is a balance.
I am the luckiest guy I know. I have been given a second chance to live my life. To be with my family. To explore the world and go on new adventures. I am really happy to be here. Part of the adventure is figuring out who I am all over again.
January 24, 2011
Endings, transitions and beginings
All right, here it goes, my first post on a new blog. I stopped posting to my old blog several months ago . The name and the content of puddin' rider was feeling more like the old me and less like the new me. Although this is a new blog for the new me, I should say a few words about the old. I stared puddin' rider just before I was diagnosed with Cancer. I was 4o, the strongest I had ever been and at the same time I was suffering. As things developed the blog became less about a cyclist and father and more about a miserable trip into suffering, pain and miracles. So as I move forward with the transition to the man that I am now I give a nod to the experiences and writing that got me here.
With this new blog, I hope to explore my new life as a man dealing with the challenges and joys of being who I am now: A father, cancer survivor and an adventure hound among other things.
It has taken me a while to re-label myself. As I got sick with Multiple Myeloma, I lost all of the identities that I had, I was no longer a cyclist, I was no longer a provider for my family and I was more of a liability to my family than any sort of support. I no longer work at a traditional job. I am often too sick to be relied upon for any sort of regular responsibility. My physical and mental abilities are greatly diminished in many ways. This is not something I really care to dwell on other than to discover how I can integrate and accept them into my new life. Surely that will be a big focus of this blog, hopefully there will be more: witty humor, various ramblings, occasional insights and tales of my adventures as well those who inspire me.
So, stay tuned.
Thanks for reading
With this new blog, I hope to explore my new life as a man dealing with the challenges and joys of being who I am now: A father, cancer survivor and an adventure hound among other things.
It has taken me a while to re-label myself. As I got sick with Multiple Myeloma, I lost all of the identities that I had, I was no longer a cyclist, I was no longer a provider for my family and I was more of a liability to my family than any sort of support. I no longer work at a traditional job. I am often too sick to be relied upon for any sort of regular responsibility. My physical and mental abilities are greatly diminished in many ways. This is not something I really care to dwell on other than to discover how I can integrate and accept them into my new life. Surely that will be a big focus of this blog, hopefully there will be more: witty humor, various ramblings, occasional insights and tales of my adventures as well those who inspire me.
So, stay tuned.
Thanks for reading
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