November 28, 2012

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

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. 

March 02, 2012


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?

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.

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.

January 28, 2012


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.