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.
October 28, 2011
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.
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