Ramblings from a Puddin Cyclist

North Fork dreams in memory of George Pringle Wright

2010-06-27T10:42:00.000-07:00

In 1998 my good friend George died. He had battled cystic fibrosis and the complications that come with it since he was one year old. In his 30’s, already past his life expectancy, he became an accomplished whitewater kayaker. That is how we met. We taught kayaking together for several years but particularly enjoyed going paddling together. Our favorite stretch of river was Chamberlin falls on the North Fork of the American river.
The north fork is the epitome of perfect California Whitewater. It is free flowing. If the snow is not melting or a warm storm is not lashing the Sierra then there is no water. The beauty is fleeting. To be there and see it one must be committed to a grueling hike or be ready to paddle Class IV whitewater.
When the north fork is at its best, is on a sunny day in the spring when California Poppies line the walls of the canyon against an emerald green of buds of new oak leaves bursting into the spring air. The water, when it comes out of the shadows, is crystal clear to the point that the white gray, and golden boulders and cobble stones can be seen in the deepest of water. The rapids are pool drop, low waterfalls backed up by jumbles of house sized boulders. The water drops over the cleavages between gray rocks in deep green tongues that fall into snowy white foam piles. The eddies are blown glass in shades of blue and green.
George and I would return time after time to run the North Fork. We went when it was snowing and the water was steely gray and snow gathered on the rocks. We sipped hot chocolate from thermoses at take out while running the car heater on full blast. We went when it was sunny and warm and ate sandwiches while sitting up on the canyon side in a field of poppies. We discussed our runs through the rapids on end, analyzing every stroke and laughing at ourselves for being whitewater nerds. It seemed that we’d agree that every trip we did, was the best trip we ever did. We would marvel at how lucky we were that we could be there, playing in that sacred playground.
I always knew that he was sickly and that something was wrong, but I never asked. I could tell he didn’t want to talk about it. I knew he would when he was ready. About a week before he died, George called me from his hospital room to explain that he’d know that he’d had cystic fibrosis all his life. He asked me to explain to all of our friends why he had not talked about his illness in life. He didn’t want to dwell on the negative. He wanted to live life for the day. Then we said goodbye.
I learned a lot from George. He was passionate about what he did. Teaching kayaking was a passion for him. He truly wanted the best for his students. He loved his community and friends but refused to deal with people that “raised his blood pressure.” He always had a good attitude; even when he would spend weeks in the hospital fighting infections, or at home for months at a time recovering from illness. We would talk on the phone for hours about everything.
When he died, a few of his closest friends, and I paddled the North Fork in his memory. It was one of classic beautiful days. That was ten years ago.
In 2008 while I lay in a hospital bed, contemplating my life to date, I often thought of the north fork and how being there was a highlight of an otherwise extrodinary and fortunate life. I would also think of George and the suffering he experienced with courage, dignity and a positive outlook. Both of those thoughts gave me strength to fight, for my life, for the future of my family and for the outside, ever so faint hope, that one day I might return to that special place. Honestly, at the low point of my battle with cancer, I never thought that I would ever, in this life, have another chance to feel the cool waters of the North Fork lift the hull of my boat. That seemed too much to ask for a man battling for his life.

Yesterday Beth, one of my oldest and dearest paddling friends, and I paddled the North Fork. It was the same place the rocks were just imperceptibly smoother. The day was hot and the water shone like liquid jewels. The rapids distracted us from our daily trials and tribulations and the water soothed our souls. We both decided that we were incredibly lucky to be there and that it was a perfect day on the river.

2010-02-16T13:37:00.001-08:00

When you have almost died, everything in life looks a little bit brighter, a little bit shinyer and a little bit happier. Then you go to Maui and it is like whammo! I felt like I was in the emerald kingdom of OZ. The greens are greener, there is a rainbow around every corner. The whales were leaping like lizards on a hot plate. The ocean was that special blue that is only reserved for HDTV ads. The kids had an awesome time, the grownups had an even better time.
A New Turn On:
I paddled an outrigger canoe for the first time, thanks to my old friend Leo. I am smitten with the sport. It is aerobic, it happens in the water and it has that hypnotic stoke of a technique based repetitive motion that melts the miles away. It is such a stoke that I might have to change the name of this blog to the puddin' canoeist. OK, I did do it in ideal conditions including 70 degree water and whales swimming up to me. Nevertheless, I am hooked. I have been really frustrated by my attempts to get back on the bike. The canoe may be a way of moving forward with a new fitness activity without the grief I've been feeling for the loss of cycling power.
I came home with a batch of poomoania. Whatever, I am now back at work and ready to go. Anyone want to go paddling?
Thanks for reading

What's Next

2009-12-23T13:15:00.000-08:00

Every year for the last 10 or so I have written goals and objectives for myself for the new year. The last two years those have been very very simple, 2008 was get out of pain ( that was berfore I knew what was causing the pain) and 2009 was recover. In years previous I have organized my goals up into personal, professional, athletic and spiritual. For 2010, now that I am mostly recovered, I am going back to the old way.

I have been thinking a lot about my athletic goals. I am waaaaaay out of shape. It is hard coming from where I was two years ago to now, to not beat myself up about my fitness. As a true puddin' I have always been pretty good abouyt only doing things that are funn and have immeditae reward. That is why it is much easier right now to watch House DVDs drink rum and eat bacon. I am already at 195 pounds which is 10 pounds heavier than I have ever been and 20 more than my fighting weight. On the psoitive side it is better than the 127 pounds that I weighed 14 months ago. The fact of th matter is that I just cant stand seeing the spare tire that has developed around my waist. There is no way that I am going to go out and buy another set of pants the next size up.
I haven't really gotten back on the bike yet. For some reason I am really having trouble with feeling ready for it. At the same time I really want it. So for now I am spending time in the gym on the walking/ running machine and the rowing machine. I am enjoying that, as well as the free weights and core work. I do feel like it is too early tgo set a big goal. No Death Ride this year. I would be really stoked if I could ride a century by next fall but I really don't know if that is realistic.
One of my goals is to be able to paddle Giant Gap this year. I think the hike in would truly be the biggest challenge for me. Not to say that the whitewater would not be a challenge. As a result I am alreaddy working on walking and getting my legs strong for downhills. I am also trying to figure out what boat to paddle... I am open to suggestions.

Outlive the Bastards

2009-12-22T09:32:00.000-08:00

Billy posted something on facebook that made a memory come flooding back. His quote was "drink deep." Which brought to mind my favorite quote by Edward Abbey:

One final paragraph of advice: do not burn yourselves out. Be as I am — a
reluctant enthusiast... a part-time crusader, a half-hearted fanatic. Save the
other half of yourselves and your lives for pleasure and adventure. It is not
enough to fight for the land; it is even more important to enjoy it. While you
can. While it’s still here. So get out there and hunt and fish and mess around
with your friends, ramble out yonder and explore the forests, climb the
mountains, bag the peaks, run the rivers, breathe deep of that yet sweet and
lucid air, sit quietly for a while and contemplate the precious stillness, the
lovely, mysterious, and awesome space. Enjoy yourselves, keep your brain in your
head and your head firmly attached to the body, the body active and alive, and I
promise you this much; I promise you this one sweet victory over our enemies,
over those desk-bound men and women with their hearts in a safe deposit box, and
their eyes hypnotized by desk calculators. I promise you this; You will outlive
the bastards.

Like may I read Abbey voraciously when I was young. He helped me form many of my attitudes. Especially the curmudgeonly environmentalist and passionate recreationalist. The quote says to me that it is important not to take any of your work too seriously, or better yet to realize that nothing is really that important in the grand scheme of things. Rambling out yonder is just a important as the most important brain surgery because what it is to save life if life cannot be enjoyed?

That is part of the essence of what it means to be a puddin'.

So that is my thought for the day... It feels good to be writing again. I took a long hiatus, who knows when I will post again but I've got a new spark for this blog. I'm gonna make a puddin' attempt at keeping it up.
Thanks for reading.

The Toughest Person I know

2009-09-15T11:46:00.000-07:00

For over a year I have had a link posted to Check on KK. That is Kelley Kalafatich. She is recoverinng from a terrible disease called transverse mylitis. It has left her paralized and in lots of pain. Every day she wakes up to a pretty rough life. Every day she work on her goals. She doesn't complain and she always asks how you are doing.

Many people tell me that I handled my illness with grace. Thanks. I used Kelley as my role model. She has a video on You tube the link is here: See the video If you feel inspired by her story. Please think about donating a few bucks to her cause... and thanks for reading.

2009-08-29T06:52:00.000-07:00

What a great summer it has been. The last three weeks have been a whirlwind of fun. The family went to the Wausakee Club in Wisconsin as guest of Dr. KT and Mr. Bevridge. It was a wonderful trip with sailing, dining swimming fishing, canoeing, napping on the screen porch and more dining. It was such a great way to spend time withthe family. The girls never really stopped playing until we put them to bed at the end of the day.

Then we came home and had a visit from Mark K. and his fmaily Sierra and Jen. In the middle of that the girls had thier first day of school. The visit culminated with the whitewater voyages reunion. The raft company that the Chickenhawk and I worked for 15-20 years ago threw a party inculding a day on the water for all the old guides and thier families. It was so great to get together with all the old folks. Most of the old guides have moved away from this area so we hosted a party at our house one night.

Now Jim M. and his kids are visiting and we are having a great time again. It is such a blessing to have so many great friends and to be in touch with them after so many years. I love that much of the reuniting has been catalized by facebook. I have been spending a ton of time there finding out what is happening with people that I have know my whole life and with my current group of friends. It has really chenaged the way I stay in touch with people and I am pleased.

Work is good, my health is fine and life is the best.

That's it for now.

Zen and the Art of Kayak Rolling

2009-07-26T06:26:00.000-07:00

I have always had some sort of sport that I focus much of my extra attention on. Recreation is a very important part of my life. Some have religion, some have art, I have outdoor recreation in one form or another. I think we all need something to help our spirits transcend the beat-down of daily life. For me, it is usually one sport at a time and I focus like a laser.

Right now it seems that post cancer and during recovery, whitewater kayaking is it. I "paddled" for many years before we had kids and stopped because riding was getting my attention. I am a rider, but I think I have always, first and foremost been a waterman. The call of the surf, the river and the sea are a siren song for me. The feeling of getting a boat or board up on a plane, when you are moving so fast that the water becomes almost a solid and the rules of interaction between you and it change is irresistible to me.

Water is a basic element. It holds the wisdom of the universe. Tom Robbins said, "Water invented humans as a means to transport itself across land." I buy that. I know that I have learned a lot from my time spent in and around the water. Much of it could be encapsulated in the basic magic trick of rolling a kayak.

Rolling is one of the strangest things that you can do. Think just about the physics of it, An upside-down kayak is just like a ship with a keel. The center of gravity is below the surface of the water by the pure fact that your body is hanging from it. Then using an ancient and amazing series of body language you flip the boat upright. That sounds interesting, but there is more to it than that.

Just like in so many challenges, the psychological aspect is much more daunting than the physical. Unlike the teachings of Yoga, meditation, or the basic human need, the first thing that rolling requires is the ability to hold one's breath; like a surfer being help down by a wave. Like and action hero finding sunken treasure. Like Jim on Mutual of Omaha's Wild Kingdom fighting an 800 pound 10 foot crocodile. You have to hold your breath under the stress of wondering when you are going to get to breath again, while performing a wicked series of unnatural, upside down movements.

When a beginning kayaker learns to roll they usually start in a pool. It is warm, calm, and there are people near by to help out. Once they have the basics down, they have a "pool roll." The next step is to go to the river acquire a "combat roll." For anyone, their first combat roll is a joyous moment. Since the alternative is swimming out of the boat, through a rapid, getting banged up and cold, emptying the boat, finding all the lost gear, and getting back in the boat. Just rolling up is a much preferred alternative.

The next step is to acquire a 'bomb proof roll." In other words you can roll just about anywhere, anytime, with or without a paddle. That is to become a Jedi of the kayak roll. It is to become a master of ones fear and basic desires; one who has the patience to wait or the foresight to jump on the moment to act. A master has the ability to face the dragon calmly and with a rational mind. A master knows, even upside down and backward where they are in a complex rapid. A master of the roll can go years without swimming. They become more and more proficient in their paddling. More and confident. However, the reality is that all kayakers are between swims. The master knows that ultimately, the river is in charge.

River running- kayaking, for me are analogous to life. After being a master of the roll, I am back to being a student. In the past few days of paddling, I have swam a couple of times. Two swims, many rolls. What stands out for me is the swims, not the rolls. I am not mad at myself. I am excited to go back to the basics. To work in the pool until my body, my muscle memory finds that bomb proof roll. And that, for me, is recreation.

Thanks for reading

It was a good day

2009-07-19T06:44:00.000-07:00

I got out and ran Chili Bar yesterday. What a great day! Adrienne, and Brett went and so did Deanna. It was as hot as it gets in Coloma and when it gets like that, the only place to be is on the river. A dry top with capilene was too much clothing so I rolled over a lot. I also rolled up a lot.
We stopped to pick blackberries a couple of times. They were sweet and juicy down by the river where the plants get constant water.
There was a bit of carnage with our group, a swim or two... no names mentioned. But everyone stayed safe and happy.
We rescued a guy from another group that had swam and cut a big chunk out of his ear. It was weird because the other people in his group didn't do anything. They just let us do the rescue. Young kayakers... they don't have any sense.

After paddling we went back to the ranch and grilled more steak and chicken than we could eat. Also had roasted potatoes, corn on the cob cafe mahjaic style, a huge salad, roasted red bell peppers, lots of ice water and a bit of beer as well. Doc KT came and joined us after work and then they went to the art walk in Pville while Brett and I cleaned up and caught up on 2 years of not seeing each other.

KT and Aidee came back from the art walk and we had some New York Super Fudge Chunk.
A perfect day all around.

Gettin' Out

2009-07-15T05:54:00.000-07:00

After a month of fevers and fatigue, I am feeling better. I am sure the high doses of prednisone are doing the trick and I'll pay for that later. It is 5:45 and there is a steely glow over the blond grey valley where the sun will look over the canyon rim. It has been hot. The weatherman says 104 in Sac valley but my thermometer said it 107 on the patio yesterday.
Right now there is a down canyon breeze knocking doors shut and shaking the tops of the live oak. Cold air dumping down to the valley following the snaking path of least resistance that we call the South Fork of the American.

A month ago I was paddling her. I sure liked it but she seemed fairly indifferent to the caresses of my paddle and boat. The recent illness set me back, but I am ready to go back again soon. Phil loaned me a cool new playboat called the All Star. It has been sitting under a tarp in my yard begging me to take it out. All I can say is soon, jackass, soon.

The ChickenHawk is up in Bend visitng the clan up there. She also went to visit Dave, Suzi and Joey last night. Life is good. The kiddles are camping with Nana and Papa and their cousins. Life is good. I am back at work. LIG. Work is busy. LIG.

I made a killer dinner for old neighbor Seth last night. Tri tip, BBQ corn smothered in melted butter, salt and pepper, and potato salad. His kids and wife are out of town as well. We went over and I got to see the new house they bought a year ago when I was sick. Life is Good.

Tonite I am going out with KT. Bill is out of town. Looking forward to that. LIG.
Ok so it is a slogan off a T shirt but it is working for me.

Mr. Waddles and Mr. Wag Tail are up now and asking for the morning meal. They are the ducks that came to stay at our house this summer. They are really cute. Two males. This is California so they can't be married but they act like they are. I'll post a picture later. I'm gonna go feed them and get on with my day.
Thanks for reading.

The Big Eddy

2009-07-12T06:23:00.000-07:00

You can tell something is up when I am not blogging. Either that or life is too boring. I've got a combo of that going on right now. I went back into the big house, that's what I am calling the hospital now, on June 13th. I had a fever and bad cough all weekend so I went and checked in with Pneumonia. I got rid of that in four days and went home. Since then I have been battling fevers, fatigue and lung issues. I believe it is toxicity induced pneumonitis, something that is a rebound from last september's bone marrow transplant. The treatment is prednisone and that is what I am doing with tacit doctor approval. They have not officially diagnosed it yet but it makes the fevers go away and I can deal with life a bit better. My lung capacity feels like it is at about 20%. I can walk, slowly. I went down our road (a fairly steep hill) and it took me about 20 minutes to hike back up with about four stops to catch my breath. I used to be able to ride up that hill in the mid gears. I am a long way from that now.

There is more to this. For the last 4 weeks I have been mostly in the house feeling sick and debilitated. The kids are out of school and the ChickenHawk is wrangling them really well. They have gone on camping trips and have been playing in the pool. I have been trying to participate as much as possible but I don't have enough energy for camping and much of the time all I can do is watch or, just go take a nap. This is a hard place to be. It is like looking at my life through a glass wall. I am painfully aware of my absences as a father and a husband. It drives me nuts.

Work is kind of the same thing. I want to be there doing my job but I just cant quite muster the health or the energy for the last week. I am almost there but not quite. And the illness is not really being treated yet, just diagnosed, it is not feeling like I am moving forward. I feel like I've been stuck in an eddy for a month.

All of this brings me to a realization. My life has changed in so many ways that I often don't feel like it is my life. What I mean is that the transition from normal person to cancer patient to recovering cancer patient has got my head spinning. I need to embrace the latest version of me and stop worrying about how I used to be. To that end, I am in search of cancer support groups and friends that have been through what I have. I need some new peers for this unwanted identity.

Back in the Boat

2009-06-04T14:09:00.001-07:00

Hey Y'all. Once again I've been gone way too long but I've been busy. Not sitting around in pain and a fog of morphine. I have crossed over to feeling more recovered than recovering. My weight is back on, I've gone for a couple of easy bike rides. Moreover I am back running whitewater in my kayak! I cant tell you how much better it is to be sitting in a little boat than a hospital bed. I am not strong at all but my time in the boat has built good technique so I can fake it. I still have the goal of Leadvillle 100 at some point in the next couple years but for now running Chili Bar is the best.

Things round the house are getting better. It has been a dog tough year and a half for all of us. The level of PTSD that we have been feeling is decreasing. We are planning vacations and enjoying each other's company again.

Work is great. I am getting back into the swing of things and reconnecting with old friends that started as clients. In fact kayaking and work seem to coincide... The other day I was paddling with two different friends that started as clients. Thanks for the paddling Ray and Traci.

Gratitude is the name of the game. I feel good almost all the time, even when I feel bad. I had a headache this morning and I didn't really care. I have had a cold for a week or two and I don't really care. I am alive and there is so much to do! Anyone want to go paddling? Drop me a line. I'll try to get some paddling pics to post

Back to Work

2009-05-07T09:13:00.000-07:00

I am back at work! In many ways it has been a great homecoming almost more like coming home than coming home was. I am constantly counting my blessings that I work in such a great place. They held my office and job for me while I took 14 months to fight cancer. My co-worker Matt kept in touch with all of my clients and helped them when they needed it. To me that was one of biggest gifts that I have ever received.

I work as mortgage consultant for Bentley Mortgage and Real Estate Services. I have to say that I picked the best possible 14 months to take off of work. Everyone that isn't living under a rock knows, the mortgage and housing industry did almost the same thing I did; It took a trip to the brink of death and then started to come back again. Thanks to the efforts of the Obama administration and sagging economy, business is back up for us. I returned to a busier office than I have seen in several years.

Much like myself the industry has changed as well. The mortgage industry was suffering from lack of regulation greed and the bad behavior that comes with a lack of discipline. I think of it like a room full of 5th graders when the teacher leaves for too long and there is an unlimited supply of candy in cupboard. Some of the kids are going to take full advantage of the situation to do whatever they want to do. Other kids are going to behave the way they know they should and just wait for the teacher to come back.

Now the teacher is back and she brought the principal and the superintendent of schools and the school board and they are doing a study as to why the kids acted the way that they did. They have cracked down and reinstated all of the rules that they should have been enforcing in the first place, plus some more that don't make sense. The thing is, anyone knows what happens when you leave a group of kids alone in a room with no supervision and lots of temptation.

I was there for the end of the party and missed the big bust. Now, as I come back, all the rules have changed and I have to re-learn my job. The basics are all the same but there all sorts of new nuances. Of course, that follows the same theme that I have been living since the Bone Marrow Transplant. I have new body as well. It is 30 pounds lighter, significantly more weak, and can't remember random things.

I also have a fairly new outlook on life. I've always been grateful for what I've got. Now I am even more that way. I also am living life day to day, moment to moment, doing what I can, when I can and trying to do my best at everything. Even though I am in remission, I will most likely die from complications from multiple myeloma at some point. Maybe next year, maybe 20 years from now. The point is, I (just like you) have a limited amount of time left in this life and I am more aware of that now.

I am all about quality time. Time with my kids. Time with my friends. Time doing things for myself. Time helping other people. Time enjoying the beauty that the universe has to offer.

Thanks for reading

Installing Love

2009-04-21T14:18:00.000-07:00

I just picked this up as an email from Phil and Mary. I am not the kind to forward cute emails but I had to share this one, it is just too good.

"The Installation of Love"Installing Love on the Human Computer: Tech Support: Yes, how can I help you?
Customer: Well, after much consideration, I've decided toinstall Love. Can you guide me through the process?
Tech Support: Yes. I can help you. Are you ready to proceed?
Customer: Well, I'm not very technical, but I think I'm ready. What do I do first?
Tech Support: The first step is to open your Heart. Have you located your Heart?
Customer: Yes, but there are several other programs running now. Is it okay to install Love while they are running?
Tech Support: What programs are running ?
Customer: Let's see, I have Past Hurt, Low Self-Esteem, Grudge and Resentment running right now.
Tech Support: No problem, Love will gradually erase Past Hurt from your current operating system. It may remain in your permanent memory but it will no longer disrupt other programs. Love will eventually override Low Self-Esteem with a module of its own called High Self-Esteem. However, you have to completely turn off Grudge and Resentment. Those programs prevent Love from being properly installed. Can you turn those off ?
Customer: I don't know how to turn them off. Can you tell mehow?
Tech Support: With pleasure. Go to your start menu and invoke Forgiveness. Do this as many times as necessary until Grudge and Resentment have beencompletely erased.
Customer: Okay, done! Love has started installing itself. Is that normal?
Tech Support: Yes, but remember that you have only the base program. You need to begin connecting to other Hearts in order to get the upgrades.
Customer: Oops! I have an error message already. It says, "Error - Program not run on external components." What should I do?
Tech Support: Don't worry. It means that the Love program is set up to run on Internal Hearts, but has not yet been run on your Heart. In non-technical terms, it simply means you have to Love yourself beforeyou can Love others.
Customer: So, what should I do?
Tech Support: Pull down Self-Acceptance; then click on the following files: Forgive-Self; Realize Your Worth; and Acknowledge your Limitations.
Customer: Okay, done.
Tech Support: Now, copy them to the "My Heart" directory. The system will overwrite any conflicting files and begin patching faulty programming.Also, you need to delete Verbose Self-Criticism from all directories and empty your Recycle Bin to make sure it is completely gone and never comes back.
Customer: Got it. Hey! My heart is filling up with new files. Smile is playing on my monitor and Peace and Contentment are copying themselves all over My Heart. Is this normal?
Tech Support: Sometimes. For others it takes awhile, but eventually everything gets it at the proper time. So Love is installed and running.One more thing before we hang up. Love is Freeware. Be sure to give it and its various modules to everyone you meet. They will in turn share it with others and return some cool modules back to you.
Customer: Thank you, God.
God/Tech Support: You're welcome, anytime.

In other news. I have started working again. Mostly mornings. I tfeels great to go back into the office. I am feeling good and sticking with the workout plan.

Back Home

2009-04-18T09:02:00.000-07:00

I am back in Coloma and it is good to be home. I am trying like heck to stay with the fitness plan that I started in AZ. Lifting weights, walking and yoga. I feel like I am getting stronger. I can finally pick my kids up. I went to work yesterday and plan to on Monday and Tuesday as well. My stamina is good. I can keep going all day as long as I am doing easy stuff most of the time. I feel like I can kiss day time TV goodbye. That is a wonderful thing. My yard needs weed whacking in a big way. Anyone want to trade weed for weed whacking? There is no way I can do it myself. It used to wear me out before I got cancer. I'm not even gonna touch the weed whacker.
Life is good. I am living day to day and having a great time. We'll see what's next.
Thanks for checking in.

You Got to Move

2009-04-09T11:04:00.000-07:00

When the Lord Gets Ready,
You Got to Move.

I'm In Tucson hanging with my Mom in her retirement community. It is great she lives on the border of the desert and there is all kinds of wildlife. We just got back from the gym where I was whaling on my pencil thin arms bony shoulder and scrawny back. My goal: to look good naked. Just like Kevin Spacey in American Beauty. I love that movie. Not sure how many times I've quoted it here but it must be a lot.
Who'd believe that this is my life up until now? Cancer survivin' is a real pain in the ass but it lets you get away with all kinds of mischief as well. I wish I could tell the stories here but I wont. Ask me offline.
I am doing really really well. I walked about a mile this AM! I could have done more. What is for lunch?

I think it is going to take me at least another year to get into shape at this rate. Leadville beckons.

Gratitude Again

2009-04-05T08:35:00.000-07:00

After spending another week in the big house and taking a big step backward in my fitness I was feeling really angry, really depressed. It probably didn't help that I was kicking morphine and anti depressants at the same time. I was pissed off at everyone and everything last week. Especially myself. Then I heard a story about a guy that has terminal cancer. He lives somewhere in the middle of the Nevada desert off the grid, by himself. His prognosis is that he should have died two years ago. He is a medical and spiritual miracle. He is happy. He is ready to die. He is at peace and grateful for what he's got.
That used to be me. I lost it somewhere along the way. The anger and self pity took over. When I heard that guy speak I realized I have not been myself. I had forgotten to count my blessing instead of my problems and pains. Once I realized that it was an easy shift back to being me. I am the luckiest man in the world. I have the best family and community that a man could hope for. I have a second chance at life. I have a body that works. I am not in pain. What else is there?
What are you grateful for?
Goal: Leadville 100 not sure what year, anyone wanna do it with me?

2009-03-30T08:23:00.001-07:00

Well... where do I start. I got home from the big house, the kaiser hotel, the hospital on Friday. It was another week long stay. The boredom was grinding, the procedures were disgusting and kicking morphine was a nightmare approaching the worst thing I have ever done.

I am tired as all hell. I've lost about 10lbs that I didn't have to lose. Fitness is back in the toilet. I got out of breath fixing a flat on the Chickenhawk's mountain bike.

I did get my long lost sense of smell back. Funny though, I can only smell one thing and I smell it all the time. It sort of smells like electrical fire.

As you might guess, I am filled with mixed feelings.
Good:

I am off of morphine and anti depressants.
I am home.
It is spring in the foothills, and all those other life affirming things.

Bad:

On some level, I want morphine.
I now feel the highs and lows of life. The lows are dark and evil. The highs are great.
I have taken a big step backward in my ability to function.
Despite the above, my expectations of myself are high
I can take 10 mgs of ambien and still not sleep.

It is all temporary. I am in the moment, this is just another step forward, even if it feels backward.

OK I have a big list of stuff to get done. Thanks for reading

Coloma Goes Boi-yoi-yoing

2009-03-19T10:56:00.000-07:00

This is it. One of the many reasons I live here. Coloma in the Spring time. There is nothing like it. All the south facing slopes are covered with poppies and the lupine is coming out too. Here is the view from my patio looking across the river:

OK it isnt the best pic but if you look close you can see the poppies up there on the left and in the middle.

I went for a bike ride the other day. My first one since you know what. Downhill was great. I felt like I hadn't missed a minute. Uphill on the other hand... and we are talking very slight up hill sucked. I have no strength to turn the pedals. I think I'll wait a while before I ride again. I did enjoy my bike hugely. I took my cyclocross bike, a bianchi axis. Note the fresh yellow bar tape. I didn't win a tour stage and I am not in the yellow jersey. I think what I did was a little harder, certainly more unpleasant. So I gave myself a bit of yellow.

I've also got a few pics to wrap up the vacation. These are on the penultimate day at Refugio State Beach.

The girls spent hours running around in the waves. Note Dana is soaked. She did a faceplant right before this shot was taken.

The beach was beautiful and the temps were in the low 70's. Note, you can check out my Facebook page for a lot more pictures.

There we are making smores on the last night.

One last comment. I am sitting here listening to talk radio, NPR's talk of the nation. The subject is populist outrage over the bonuses at AIG. What the hell!? Where was everyone 4 years ago when this mess started brewing. Oh yeah, we were cashing out the equity on our homes and living fat and happy. No one was looking at what the Bushies and their corporate buddies were perpetrating on the economy. This has been going on for years. Pay attention my friends, the people with the money are counting on us looking the other way. What are they doing right now while we are worrying about the bonuses. Look at the magician's other hand. I'll bet there is something nefarious happening while we are thinking about AIG.

Whatever... It is all small potatoes to me. I am alive and I get to spend time with my family. It is spring and I am going to go paddling right now.

Love you. thanks for reading.

Spence

La Vida Dolce

2009-03-08T10:07:00.000-07:00

Do you know the feeling?

The trip is winding down, your body is starting to feel a bit worn from the exertion, you are more familiar with the other people on the trip. Everything is still going great but you know in a couple of days it’ll be over. And you’ll remember it forever. Do you know that feeling? It has bee a great trip with the girls. RVing is a blast.

We went to Disneyland on Friday with Aunt Chris and Uncle Mike. The girls had a great time and we got to do EVERYTHING that we wanted to and some 2x or 3x. Thunder Mountain was the biggest hit with the so yes we did it 3x. I rode in a wheel chair most of the day and that got us past most of the lines. Our trip through the park was a 12 hour whirlwind. Dana said it was the most fun she’s had in her life.

Now it is Sunday and we are at Newport Dunes RV park in Newport Beach. It is the ritziest RV park in the world with a bay, clubhouse, workout, pool, and Jacuzzi. Not to mention WiFi.
Aunt Chris had a breakfast party at her place in HB yesterday and we got to see all the cousins: Danny, Matt, Rachel, Joey, James and Jeff as well as Christie and Amy and of course aunt Cindy. It was the biggest reunion that we’ve had in some time. Thanks little blue schwin and Uncle Mike for putting that together!

We are tired and the CH is pooped. Our intended destination for tonight is Goleta’s Refugio Campground. Then home tomorrow. The weather is in the 70’s and clear with windy afternoons.

Life Goes On

2009-03-03T10:00:00.000-08:00

Welcome to the next post; a pretty momentous occasion. We are on vacation. We rented an RV from a company in Cameron Park and drove over Echo Summit on Friday. We camped that first night at the base of Monitor Pass. Just pulled over at about 11pm and went to sleep. In th emonring we toured down 395 along the Walker River through Bridgeport and past Mono Lake; one of my favorite drives.

Then we stopped at “the hot tub,” a hot spring in the middle of the Owens Valley where we all had a mid morning soak. The water wasn’t too hot or too cold. The view could not be beat. After the soak we continued southward to Bishop and Schat’s Bakery for Shepherder Bread (the worlds greatest bread) and donuts, raisin bread and strude. l should have got some Garlic Cheese bread too, what was I thinking?

At Independence we turned east and into Death Valley National Park. I haven’t really been here since 5th grade. It hasn’t changed much. We camped the second night at Stovepipe Wells, a giant flat gravel parking lot with parking bars to mark the “campsites.” The only redeeming naturalness to it was the tent campsites around the perimeter of the campsite. The girls played in the sand and made a “mole mountain.” I drank my first beer in 12 months. It was a Corona Light and I fell asleep after drinking it.
Sunday morning was partly cloudy and in the 70’s. We played in the sand dunes near-by. I hiked with the family all the way out to the dunes, climbed the steep dunes and even slid down them. The girls had a great time jumping off the tops of the dunes. I must have walked over one mile. That was huge for me, I felt like I had done a big ride when we got back to the RV. I did one of those straight to the kitchen and make a big sandwich post workout maneuvers. Then we went for another hike up Mosaic Canyon. It is a beautiful slot canyon the required a bit of advanced hiking. I went as far as I was comfortable and then headed back to the RV for some shade and a cool drink.
It feels really really good to be on the road and having an adventure. It has been 1.5 years since we went somewhere as a family. The girls are great travelers and are having a great time. I am already looking forward to our next trip, whatever it might be.

The RV is perfect for us and our current situation and considering the time of year. We are totally self contained. We can pull over and sleep anywhere. All the food is right with us and you can make a sandwich rolling down the road. We’ve got tons of food and have yet to go out for a meal. The RV drives like a pig, but that is what you get.
Then we turned the nose of our 24’ RV north to Ubehebe Crater. It is a big hole in the ground created by volcanic action. The girls took the steep trail down into the crater while I watched and shot photo’s. The wind at the top of the crater was intense. At times I had to lean into it to stay standing. Dana pooped out at the bottom of the crater so the Chickenhawk piggybacked her out of the hole. It was amazing to watch that tough woman schlepping the 40 pound rug-rat like she was a small load. I amazed at how tough that woman is.
We camped at the northish end of the park at Mesquite Springs which much more resembles a campground, with benches and fire pits and toilets that aren’t a ½ mile away. We are now at Scotty’s Castle.

One Year

2009-02-19T11:26:00.000-08:00

Sunday was my birthday. I kept it quiet and with the family. It was about the best day I have had in the last year. This is the anniversary of my being diagnosed with multiple myeloma. I wasn't sure how I would feel. What feeling would come up. I just wanted to be in the moment.

On Sunday night, I woke up with an incredible feeling of accomplishment; I did it! I did it! I kept saying to myself as a cried tears of relief and gratitude. I said I would beat the cancer and I did. I didn't do it by myself though.

As I felt my self grow weaker and more sick, I got into action. I talked to Adam and other freinds to let them know what was happening and asked for their help. I knew I was asking a lot. Within days a support group of more than 100 freinds family and neighbors was mustered. I was surrounded by a team of folks that were going to take care of me and all of the responsibilities that I wouldn't be able to take care of myself. I felt incredible gratitude.

With the security of knowing everything was OK I went into patient mode. I went to countless doctors appointments. I started taking drugs that are essentially poison. The pain I was experiencing grew greater and greater. I slipped into a fog of morphine use. I was furniture in the room instead of a contributing member of my family. I was a liability. I got nauseous and started loosing weight. Leaving the house became a major hardship and a trial of pain. Walking to the bathroom was my limit, sometimes more than I could do.

The whole time the Chickenhawk was taking care of me. She was talking to the doctors and understanding what they were saying. I just couldn't do it. She took me everywhere. She cleaned up my puke and poop and piss. Her family rallied around her. Her Mom and Dad came and ran our house for weeks, feeding the kids, taking them to school. Her Sisters either came to help or took the kids for weeks at a time or both. We missed our girls terribly.

My community stood up around me. We had a work day in which 50 people showed up to do all the yard work and projects that I would have done for the next year and cleaned the house from top to bottom. So much happened in that one day it was amazing. Friends brought meals, planted the garden with herbs to ease the pain, made music, made art, made bread, just sat with me while I rambled my morphine/ nausea/ pain ramble.

The original treatment plan stopped working. The doctors recommended plan b, a stem cell transplant. We began the long process in June. I started chemotherapy. Long painful drives to Stanford, overnight stays in grungy motels or hospital beds became the norm. I'd get filled with poison and drive four hours home. The nausea got worse. I puked all the time. I lost weight. I got hospitalized. Then I got more Chemo and the whole thing started again, home, sick, hospital I cant remember it all.

Then came the actual stem cell transplant. For the first three weeks I was really bad. Almost died. Weeks were like days. Minutes felt like hours. KT, Adam, Billy, David, Mom and the Chickenhawk stayed by bed the whole way through. It was a trip to hell. I walked out the hospital 2 months after going in.
My body was wasted, I could barely walk. I had to have supplemental O2. My dad sat with me in the medical apartment and patiently took care of me. We went for walks... up to 100 yards!

I finally came home. I was still a liability but I was getting better. I had to re-learn so many things. I was really weak. I was with my kids! I started driving again. I got sick. I got better with out spending the night in the hospital. Then I got sick again, and recovered again. I started feeling good. I found out the cancer was gone! I started getting off of the drugs and my brain came back. I walked out of the fog. I started caring about things other than my health. I started exercising my body. I got stronger. I slept less. I spent more time with my girls. I felt love. I feel love. I made it. Thank you, everyone that helped me. I couldn't have done it without you.

Good Intelligence is Key

2009-02-05T12:44:00.001-08:00

Well... three weeks since I last posted. Lots of stuff happening. First I want to lay some cool stuff that I've come across on ya . Both are NPR reports. One gives a lot of hope and the other just makes me say wtf? Check them out tell me what you think.

Morning Edition, January 29, 2009 · The chances of surviving cancer have been increasing in recent years. One of the most dramatic success stories in cancer care involves a little-known cancer called multiple myeloma that had been among the deadliest types of the disease. Listen or read here: Link

When I was in school this is the last type of illegal drug we had on our minds.
Morning Edition, February 5, 2009 · They're commonly called "smart drugs" or "study drugs." Scientists call them "cognitive enhancers." Drugs like Adderall and Ritalin, generally prescribed for attention-deficit disorder, are increasingly being used by college students to help them study despite serious side effects, researchers say. Link

Now you not only have to worry about the dopers in the peleton but you have to look out for them in the cube next to you. They really have a pill for everything now.

Today I am sitting around waiting for my oncologist to call. Yesterday he called and left a message. "Your lab results are in and I need to talk to you as soon as possible." was his message. It is now 24 hours since he called and I have left him 4 messages since but no return call. What is up with my test results? I am not too worried because my mole at Kaiser has gone into my records and found the test results. Something in there is a bit askew but we (my mole, the Chickenhawk and I) don't know how to interpret the numbers on the test. The cancer markers are still in the "best we could hope for range." So I am chillin'.

If I didn't have a mole inside the Kaiser organization gathering intelligence I would probably be pushing the threat level into the Red range right now. Good intelligence is key in the war against Kaiser. If I don't hear from them by 2:30 I am going to make a frontal assault on their voice mail system in an attempt to talk to a human. You know, they discourage that. Talking to humans...
Post script: the doc called at 2:10. everything is fine.

RECOVERY REPORT
I am doing great. Dennis Eagan has been really helping me a lot. With his instruction I have regained a lot of strength and balance. I am walking almost normally now and getting stronger. I still need to make more time to exercise but it is working out. I am still having troubles getting off of prednisone and it is big pain in the butt that I don't care to elaborate on. Everything is good right now and I am healthier and feel better than I was a year ago.

BTW I have discovered Facebook and am enjoying it. Come find me there and check in.

When North is South and South is North

2009-01-15T21:34:00.000-08:00

I have written before about the insults of cancer. I.V.s , needles, poop tests, pee tests, anything that comes out of your body, they’ll collect it and test it. I have to take about 60-70 pills a day at four different sittings. I say sitting because you can’t really do much else when you’ve got a little dish of 16 pills that you have to gulp down. It takes concentration to dole them all out in the right amount and then take one at a time. Pill goes to tongue, water glass comes to lips, surround pill with water, swallow. Sounds simple right? Well once in a while concentration gets broken at the wrong moment and things can go really, really wrong. So I am cautious about my pill taking. You would be too.

In the past I have swallowed a little wrong and the pill scrapes my throat on the way down. It feels like a sore throat for a couple of hours. About once a day the pill just goes down wrong and I get indigestion and burps for 15 minutes.

But the worst, the absolute worst, is when a pill goes up your nose. That’s right it has happened three times now, out of several thousand pills I have consumed in the last year. It happened tonight; I was all prepped: pill on the right spot on the tongue, water in the right proportion, and the pill was on its way. Suddenly to my left someone says something that I must turn towards and that medium sized phosphorus pill goes up my right sinus hole. You know, the little tunnel that connects your mouth to your nose? It is the reason that 6th graders at the lunch table can make their friend’s milk come out of their nose if they tell a joke with perfect timing.

So the little pill goes up my nose hole and gets wedged. It is painful instantly. Stupidly, the first thing I did was blow my nose (wrong direction) thereby wedging it farther up there. Then we ran for the nose flusher. The nose flusher is one of those cold prevention gimmicks; a little plastic 2oz. squirt bottle that comes with little packet of special medicine (salt). It has a top that fits in your nostril and you squeeze the salt water in and flush the boogies out. Or in my case the Urocit K potassium supplement tablet.

The first time it happened I was home alone and had no idea what to do. All I knew is that my sinuses were on fire and something was pushing against my brain right behind my eye. After a few minutes of whimpering I remembered the sinus flusher. I went looking for it but could not find it. It is hard to look for things when you are in agony. Luckily the Chickenhawk had her cell phone with her AND knew where the thing was.

This evening she saw the look on my face and went and got the flusher for me. I flushed and I flushed but nothing would come out, well not the pill anyway. I did start to feel relief so I took a break and finished taking all my other pills. As I did, the pain welled back up and I went back to the flusher. After a few more vigorous tries, the partially dissolved pill fell into the back of my throat and the pain was gone.
Another day in the life…

Community Through Suffering

2009-01-08T22:17:00.000-08:00

Well it has been a lot longer than I would have liked… apologies. I have been working on another writing project that has dominated my time. It is over now and I am glad to have it done and very happy with the outcome. I was writing a letter of recommendation for a friend of mine who is applying to Stanford’s MBA program. I am really proud of him and hope that gets in to that very competitive program.
I thought I would share what is on my mind lately. I have been a bit of a hermit. I’ve really only spent time with my immediate family for the last couple of weeks. I am not sure why but I have wanted to keep things low key. The people that I have talked with have all been very complimentary with me about how I have handled the last year. It has been nice but at a certain point I get uncomfortable with a lot of praise. The fact of the matter is that I did what anyone else would do in my position. I fought with everything I had. I think the only thing I did differently than the average cancer patient is that I shared as much as I could. I stated my goals almost as soon as I got diagnosed. I wanted to share the experience with as many people as I could and bring them in to it as much as they wanted to go. I got a real benefit from doing that. In fact I think it saved my life. The people that got involved with my illness stepped up and gave help of all sorts. It was an amazing showing of support. Everyone that got involved, over 100 people, contributed in the way that they knew how. Some folks worked on our house, some stayed with me sometimes for days and days so that the ChickenHawk could get out, some watched the kids, a garden was made, some brought meals, some came and ran our house for a week or two, some just gave us money, countless tasks that we just couldn’t get to were taken care of.
My Cancer became a community event in the Coloma Lotus Valley with many hands making light work. We all did it we all got me through the cancer. The Chickenhawk and I did the heavy lifting but we all did it. When I was in the hospital during the dark days of the transplant, I had a poster in my room. It was an enlarged group photo from the burrito party that we threw right before I went into the hospital for the BMT. There are about 60 people from the community in the picture. It made me feel really good. When I was deep in the pains of cancer, I would look up at that photo and feel the warmth of all the faces smiling at me and supporting me and telling me to come home. It really worked, I knew that I was loved and supported and I would redouble my effort at whatever I was doing at the moment. It was a group effort that got me through. So if you were one of the folks involved in the whole Spencer has Cancer Process, I want to say thank you for your help in saving my life.
The Latest Update:
I am continuing to feel better. I have been tapering my prednisone dose by smaller amounts and that seems to help with the withdrawals. My legs are working really well. I am starting to walk pretty much with a normal gate. My lungs are clear but still impaired. I am doing yoga, riding the stationary bike and doing some resistance workouts. I am still dealing with major fatigue, I slept 13 hours the night before last. I often just shut down and snooze so no long drives… The pain in my ribs and shoulder is almost gone.
I am starting to think about going for a bike ride, I wonder if I still remember how or will it be another thing I have to re-learn.

Bail out the Big 3 or National Health Care

2008-12-24T15:18:00.000-08:00

I have been hemming and hawing about the surrounding funding for the Ford Chrysler and GM for some time. We (the people) and our government are in a Catch 22. If we bail them out, we are enabling them to keep going making their substandard products. If we don’t bail them out and they go BK our recession is going to be that worse. When I am in a Catch 22 (as I was most of last week) I try to look for alternatives.

Fridays Democracy Now! Had a great piece with Greg Shotwell , an activist involved in the debate. He made me realize how the US fails to make a business friendly environment by putting the burden of funding health care on the employer. Our cars cost more to make and there is less profit for the big 3 (when they make product in the US) so it is hard for our guys to compete:

I would like to see, first and foremost, that we have national healthcare,
because this is the one solution that would help everyone. It would help the
employers. It would help the employees. It would help the consumers. And that is
the biggest factor that takes away our competitiveness. That’s the one factor
that would level the playing field, because all of our competitors have national
healthcare and stronger pension systems in their country—and by “pension,” I
mean government pension—so that when Toyota, you know, imports all these cars,
they’re not paying for healthcare, they’re not paying for the pensions on those
employees that are working overseas.
Greg Shotwell on Democracy Now
12/19/08

Click on this link or paste it to your broweser for more info: http://www.democracynow.org/2008/12/19/us_auto_giants_workers_face_uncertain

Democracy Now! Is a great radio program you can stream the piece I am talking about, download a podcast or you can read the transcripts of the interview on line. It is a deep issue that is not oing to get solved overnight. The government has been subsidizing the automakers for years. That makes them complacent like fat children who don’t have to work too hard. They don’t have to be competitive with the rest of the market because they’ll just get bailed out. At the same time if we the people had been putting those subsidy dollars into a national health care system, then everyone would be insured, the car makers would have to be lean and clean but their profit margins would be significantly higher as they would no longer be running and funding their own healthcare system.

Health update: In the last three weeks I have been diagnosed with 2 infections; Cellulitis and C-diff (an intestinal thing.) I am also on antibiotics for pneumonia. There is also some kind of inflammation in my left foot that is making walking pretty darn painful. I think it is plantar fasciitis. It has been about as fun as pushing a road bike through 20 inches of sloppy snow. My attitude is OK I just feel grumpy but I almost always do this time of year.

The kids are really fired up for Santa’s visit tonight. The CH has been baking up a storm. It has been raining like crazy and snowing in the hills above us. Next year maybe we’ll all be snowboarding.

Happy Holidays and the best possible 2009 to all of you out there.
Thanks for reading.

Good News, The Best Possible News

2008-12-17T13:27:00.001-08:00

My Kappa Free Light Chain test was drawn last Friday, I met with the doc yesterday and the results were already in, which is unusual. They were the best we could hope for; they are within normal ranges! The cancer is out of me. My body should begin to heal. The bones should already be starting to repair themselves. It hasn’t really sunken in yet. I cried for a few minutes in the doctor’s office yesterday but I have yet to feel a big sense of relief.

I have had SO MUCH bad news in the last year. At every point where things could go bad or worse they went worse. At every point where there was 30% (or whatever) chance that I would get some complication from some treatment I would get the complication. Then there were the complications that were completely random like Fanconi Sydrome that just kicked my butt. Let’s not forget that I have fought off now two infections in the last couple of weeks. After so many conversations with doctors where the tone is grave, and I end up saying, “OK let’s do that treatment too, I can handle it.” The doctor leaves the room and I cry and bracing myself for the next insult to my body and often dignity.

My guard is way up. This must be similar to how a soldier feels returning to life after being in battle.

This is the guy who tries to live in gratitude as much as possible. I try to count my blessings all the time. Maybe I have lost track of that lately.

Here is the Blessing Count: Cancer out of my blood, being married to the ChickenHawk, two beautiful daughters, a wonderful supportive family, a community that is the best that I can imagine and helped my family through a really really rough patch, I have a job to go back to and the list could go on and on.

OK , that helped. It is a big transition. I can start making long term plans again. I will see my kids grow. I will be a husband to my wife rather than a patient. I can plan on a future instead of saying, “that would be nice to do… if I’m feeling up to it.” Training will have meaning, like I’m not gonna’ die before whatever-it-is that I am training for.

Still, my life is different than it was a year ago. I am still trying to find the new normal. I’ll do it one step at a time.
There is more to write but I’m tired. I’ll try to post more soon.
Thanks for reading and thanks for your support

Coming Back

2008-12-08T11:43:00.000-08:00

I was just reading my little bio up there in the right hand corner of the page. "....fighting cancer so I can get back to all that stuff." What high hopes! My life has changed and changed permanently. I've got to change that bio. The truth is I am feeling ripped off, angry and sad. This weekend was a big freakin' let down. I had really fun events scheduled for both days and have been looking forward to them for a month or so. Instead I spent the weekend contemplating my mortality and feeling like poop. I am feeling a lot better today, no fever, cough is getting better blah blah blah ok it is good news. See my last post for explanations

Getting sick means another management issue. Another doctor that I have make appointments with, another set of meds to take. These IV antibiotics I am taking take me an extra 20 minutes 3x a day and not when I take my other meds. That means an extra hour a day of dealing with meds. Luckily it doesn't go on forever.

I am feeling ripped off from getting to live a "normal" life. I have to live the life of a cancer survivor. All the work, pain, constant vigilance, the lack of security about the future (both immediate and long term) are starting to wear on me. The luster of leaving the hospital is fading and the transition to life in general is kicking my ass right now. I get a lot of positive feedback from all of my friends about how I remain so positive, and I appreciate it. But jeeez my attitude sucks right now. I know that is OK. My plan is to roll with it until the wheels fall off of that ugly huffy.

Yesterday the IV that I inject the meds through needed to be redone. That means I have to call a home health nurse to do it. It is great that they come to me! The alternative would be an ER visit. So the nurse drove an hour from Roseville, started the IV looked at it with an "oh shit" look and said, "I just used the wrong IV." She pulled the needle out, went to the car to look for the right equipment and returned empty handed 20 minutes later. She drove all the way to her home in Folsom (45 min one way) got the right thing and drove back. I felt bad for her. But I was really feeling bad for me.

That's all for now thanks for reading

One Step Back

2008-12-05T09:45:00.000-08:00

It is to be expected…. Two steps forward one step back. Yes I am talking about recovery and not cycling. I go with what is in my face. Two days ago I noticed some swelling and pain in my left ankle. My excellent home health nurse jumped all over it. It was quickly diagnosed as cellulites. It is an infection of the skin basically and can be really dangerous because it spreads really fast. So yesterday I got some IV antibiotics and the chickenhawk will be dosing me through the IV in my hand for the next few days until the infection clears up.

I am feeling like I’ve got the flu; no energy, weak, fever. It is funny how my tolerance for feeling this way is really high. I am not as much as a basket case as I was before the cancer. I’m just sick and these are just symptoms, and they ‘aint so bad.

Speaking of basket case, when I first learned about what was going on I pretty much freaked out. I was sure I would have to go back in the hospital. That made me feel terrified, depressed, angry. It really brought up some major feelings. I know full well that I’ll be back in the hospital at some point, I need to get my brain around that day. I’m not sure how I am going to do that. Well one day at a time.

So for now I am curtailing my activity and just chillin’ around the house.

A Blog About Cycling?

2008-11-29T11:53:00.000-08:00

I have had a couple of down days lately; just feeling a bit more tired and needing more nap time. At the same time I am starting to work into an exercise routine. I have been taking the girls to the park. While they play on the swings and slides, I walk loops around the playground on chipped bark. It is great for me since it is soft and irregular. Padding and balance work, perfect. The legs are getting stronger but my feet are starting to feel a bit hammered. Also I have some more rib pain creeping back.

Despite all this yesterday, I threw my leg over my spin bike. For those that don't know, that is a sort of a stationary bike that is used in gyms for "spin" classes. I only pedaled for about 3-5 minutes to try it out. I was wearing jeans after all. But it felt great. I set the resistance at nil and just did circles with the platform pedals. Uncle Mike D. was there to spot me but I was really OK on my own. The bike is very stable and the stand over is really low, so it was easy to get on and off. I can't tell you how good it felt to do that oh so familiar motion. You cyclists out there know what I am talking about, the zen feeling of moving your legs around and around. It was a real spirit booster.

My last real bike ride was on winter solstice Dec. 21st of last year. I am not sure if it is realistic and I am going to talk to my docs about it but I think that I am going to set the goal of that anniversary for my first day back on the bike. I am thinking one lap on the side walk around HLP .

So it is official, I just broke months long silence, this is a blog about biking again, well, at least me biking. You've got to know that I think about riding all the time. I have been craving Mountain Biking at Cronan Ranch but that is still far away. Maybe in the spring. I daydream a lot about some of the great rides I've done. This morning I was thinking of the time that Curtis, Tom and I rode to Coloma from Jackson on a bluebird fall day. One way shuttle rides are the best! I am really looking forward to having enough endurance to do a 20 mile ride. I would love to go down to Lincoln and ride the flat country roads down there. Of course, there would be a stop at that great taqueria just off the main drag for a super burrito with extra guacamole.

The transition is happening, I am talking and thinking about things other than cancer more and more.

Got a favorite ride of ride memory? I'd love to hear it! Chime in.

Stories of Gratitude: Charlie and Nancy

2008-11-27T20:09:00.000-08:00

Today I have a Story of Gratitude to tell.

There is so much to be thankful for. In one respect I see this blog as an expression of my gratitude on a semi –regular basis. This year, I have my health and my family to be thankful for now more than ever. It is such a simple statement but it means so much more this year.
I was first diagnosed with cancer in February of ’08. We knew it was most likely cancer for about a week before the actual diagnosis. Our world was starting to come unraveled in a big way. I was going to multiple doctor’s appointments, feeling progressively worse, and we were just plain scared. Early on we realized that we were going to need help.

When you have got troubles and you need someone solid to step in and take care of business there is no one like Charlie and Nancy. They are the parents of the Chickenhawk and it is clear that the apple does not fall far from the tree. They are not afraid of hard work and there was a ton to be done. They first did the eight hour drive down from Bend OR in February, moved into our very small guest house and started running the home. Nancy took over all the regular pink jobs and Charlie took over all the blue jobs that keep the kids fed and healthy and the house in shape. They had no complaints, just eagerness to jump in. That freed the C/H up to schlep me to countless doctor’s appointments and to help with my day to day needs.
As the months went by, I became more and more incapacitated and our needs increased. Of course lots of folks helped, but nobody put in more time, blood, sweat and tears than Charlie and Nancy. They made the trip down from Bend more times than I can count, probably five or ten. Each time they would arrive and just take over. Nancy would clean the messes that we just couldn’t get to and make homemade meals that kept us running. Charlie jumped on the outdoor projects; landscaping, gutter cleaning, car repair and home maintenance, all the things that I couldn’t hope to do. They made countless trips to home depot, the grocery store, the pharmacy and everything else.

Most of all, they took care of our girls. While the Chickenhawk and I were fighting the fight for my life. We were distracted and unable to be the parents that we want to be. That was really one of the hardest things to get through in the whole cancer process. But we never worried when the girls were with Charlie and Nancy.

At the height of the summer when I was in and out of the hospital with infections and procedures, the girls went to Bend for over a month. They stayed with Charlie and Nancy (and Aunt Shalyn and Uncle Lance) but the time in Bend is another story. While they were there they spent many days with Nana and Papa; camping, swim lessons, trips to the playground. Their help, love, tenacity and work ethic made an immeasurable improvement during the last 9 months for my family. So today, among many other things, I am grateful for Charlie and Nancy. Thank you!

Lance, Dope, Cancer and Understanding

2008-11-22T11:24:00.000-08:00

Google's spell checker is on the blink today so I apologize for bad spelling:
Ocassionaly I seem to hit a nerve. I'll try to keep it up. I am refering the comments generated by my last post. Click on that and read if you want this to make any sense. The Lance/ doping thing really sticks with me. As a cancer survivor he is a very important role model for me. In so many ways I emulate what he has done. I want to give back and to support those with cancer. I like the mission of the LAF, they helped me immensly. I also want to make a comeback to being an athlete and he has shown me that it can be done. I apperciate his work ethic and determination.

I just think that eventually the other shoe is going to drop and it will become clear that everything he has done on a bike is a lie. (I already believe that.) So I am in a wierd place, feeling ripped off and inspired at the same time. It is about the difference between choosing to believe to keep from being disappointed and believing what I see and reconciling the difference.

Lance is almost not real. I mean really, he is a BRAND. He has approached his whole career that way. There is merchandise. There are millions in endorsments. He creates a small industry by existing. There are numerous people that make a living off him. All of those people are invested in the lie continuing.

Then there is addiction. Imagine the feeling of being Lance. Incredible power on the bike, you are untouchable in the mountains. You win the biggest race in the world. You get power, money and the adulation of the masses. Everything tells you that you are the greatest. For someone with and addictive personality, this is a recipe for substance abuse. It allows the person to hide from their true demons in a warm fuzzy glow. And the man has demons; he grew up without a father, angry and abandoned. I can easily see how long term use of perfomance enhancers would change your opinion of yourself. Eventually I can see believing that the enhanced performance is coming from me and my training rather than the needle. It would just become a part of you.

When you strip away the BRAND of Lance Armstrong you get a man. A man like everyone else with faults and strenghts. That is what I can accept. I see a man in turmoil fighting like a gladiator to maintain a lie. Ultimatley that lie is a lie he is telling himself. We all do that. Unfortunatley that is how we keep from growing as indviduals. So I take the man and see him for what he is (in my eyes). I still hold him as a role model. I also feel sad for him and wish him healing and inner peace. I have an autographed Lance Armstong picture that I count as a prized possesion.

OK I think I can be done with this topic. I just needed to wrestle with it a bit, thanks for humoring me.

In recovery news: I went to Stanford yesterday. Mary was so sweet to drive me. The appointment went really well. The Doc said I am looking great and recovering as expected. I don't have to go back until the 19th (three weeks)!!!! I am tapering prednisone (steroid) I have been on a pretty high dose and it is one of those things that you cant quit cold turkey. As a result I have had some moments of incredible fatigue that sometimes is accompanied by anxiety or mood swings. Not fun! Those are my complaints. Mostly I am feeling really good and better daily.

Thanks for reading.

Stuff, Items and Things

2008-11-20T08:10:00.000-08:00

I am just finishing the book: From Lance to Landis, Inside the American Doping Controversy at the Tour De France. It has convinced me that Lance Armstrong doped his way through his career starting in at least 1999 but probably before his bout with cancer. There is too much damming evidence to see it any other way. That makes me sad and it makes me feel ripped off. It makes me think of the culture of lying that so many in public life have resorted to. I feel like I have been lied to by my favorite sports figures as well as the people running my government for the last 10-12 years. Clinton lied, Bush lied, Colin Powell lied, Lance lied, Floyd lied, even innocent Tyler Hamilton lied like a rug. We the people seem to just roll over and accept the lies, like it is just part of the game. This is hardly new news but what the heck, I just read the book (thanks for the loan Ray).

I still have a ton of respect for Lance. After all he has done to help people with cancer, I just give him a pass. At the same time I feel sad for him. He seems like a classic addict. Perhaps that is what the peleton needs; a 12 step program for performance enhancing drugs. I can just see Jonathan Vaughters leading the group sessions. "I am Jonathan and I am a power a-holic." Well just like so much of the rest of the world right now there is healing happening. Team High Road (Columbia) and Garmin Chipotle are running transparently drug free programs and doing quite well. Wow! Come to me for the latest in cycling news. Well, maybe this is interesting for my non-cycling readers. Hey non cycling readers! Let me know if you give a darn. I am pretty sure I am just rambling.

On to more stuff. Recovery report: I am more and more nimble. I am using the cane less and less. The pain in my legs is lessening. The other night, I saw myself in a mirror naked for the first time in a long time. It freaked me out. I mean I started crying. My upper body legs and butt are completely emaciated. I am trying to put on weight by eating so I have a roll of fat around my middle so I sort of look like a cross between a alien from Close Encounters and a concentration camp survivor. This made me realize that it is time to start a real training plan to bring my body back into shape. It is time to start thinking like an athlete again. My big hurdle is working out a time when I focus on fitness. I'll report back about this once I've worked it out.

Other recovery news. I started tapering my prednisone dose again. Yesterday I experienced fatigue like I have never felt before. I ended up sleeping from 2PM to 5PM. I woke up feeling awful; tired, depressed, and like I just couldn't do anything. What a drag... It is kind of hard to accept that there are days like this when I have been doing so well. There are up days and down days... I'll take 'em both. That is life.

I exchanged emails with Lars Holbek! He is an old friend that was diagnosed with some form of Lymphoma by my understanding. He first felt pain while on a raft trip on the Grand Canyon and had to be helicoptered out. His comment to me in the email was that he is probably the first person to be e-vaced from the canyon with Liver Tumors. That is just another river running first for Lars. He is recognized as the pioneer of California Whitewater. He explored and was the first to descend many (most?) of the difficult Class V whitewater in the Sierra Nevada as well as the rest of the state. He is also a heckuva god guy who does not deserve to get cancer. My heart goes out to him and his partner Nancy.

OK here is the last bit of items: I got a great link to an article about David Weins, the guy who beat Lance Armstrong in the Leadville 100. Just a regular guy with a wife and kids and a job(?).
Click Here to read the article and see the video (Thanks Bill B.)

Bert Wells sent me another link about the End Of Wall Street. It reflects just how incompetent, clueless and out of control many of the people that are running our financial system are. It is a great read. Click Here to check it out.
Thanks for reading.

Down Day

2008-11-15T13:59:00.000-08:00

Recovery has been going really well lately. I've felt better every day and gotten stronger. Today I woke up just feeling down, tired and yucky. As the day goes by I am feeling better tho'. It has been a huge week. I started driving on Wednesday and did my first solo trip into town on Thursday. I met Patrick for lunch at the fresh mex taqueria. It was great. So good to fly solo.
I went to see my Kaiser oncologist on Wednesday. It was a good meeting, I got my pic line removed. That is the little set of tubes that allow me to hooked up to an I.V. or have blood drawn without a needle. So now my body is free of medical devices.
While we were visiting the doc, the CH asked if it was OK for me to drive. At first the doc said, "yes, whatever you feel you can do is OK." Then the CH asked, "what about the pain meds he's on?" Then the doc completely changed his mind and said no way, too dangerous, impaired reaction time blah, blah, blah. As he was talking I felt my blood begin to boil. The thing that gets me the most angry right now is when someone else argues for my limitations. I feel too lucid and 'with it" now to have someone else tell me what I can and cannot do. I've been through months of people making decisions for me, necessarily and now I want to make my own decisions.
At the end of the conversation the doc gave away his bias by saying that people should not talk on the cell phone while driving. That made me take everything he was saying with a big grain of salt. Later that day the CH talked to the pharmacist who said that driving with the amount of MS contin I am taking is no problem. Bottom line, I am driving. Not far, not fast, just driving. As far as my limitations, I will take your opinion into consideration and make the decision for myself.
The CH took Thursday and Friday off and spent the night at Harbin Hot Springs . Great for her! She needs more and more of that sort of pampering after what this cancer has put her through. I flew solo with the kids with the help of Bill and Katie. We took them to the end of the season soccer pizza party on Thursday night and then they helped me get them ready for bed. It was a bit of tap on my reserves but it went really well all in all. I am really glad that the CH got out.
That's all I've got for now. Thanks for reading.

Veterans Day

2008-11-11T10:04:00.000-08:00

Happy Veterans Day!
Please be sure to acknowledge those who have served so that we can be safe happy and free! Take a moment to remember those who gave all.

An Economic Rescue Package to Save the Human Race

2008-11-09T13:24:00.000-08:00

Good Op Ed Piece click here
I am back. Scroll down for news of my progress.

A New Post ('bout time)

2008-11-08T15:07:00.000-08:00

There Just does not seem to be enough hours in the day to do everything I want to do. Especially updating this blog. Now that I am home and becoming independent I am taking over control of my own medical care. I am finding out how incredibly time consuming it is. I have to coordinate with Stanford, Kaiser and several different specialists at each place. Not to mention that my teeth have gotten hammered from the Chemo and I have been to see Dr. Scooter the amazing the amazing Coloma Lotus dentist for a crown (and possible extraction.)
Yesterday was a trip to Stanford. My Doc said that I looked the best that he has ever seen me. I feel that way too! He told me he doesn’t need to see me next Friday!!!!! I am so happy about that I cant tell you. Yesterday Mary drove me and Terry came along. It took over 7.5 hours of driving there and back, which for me right now is pretty grueling. Terry and Mary were great sports though. Thanks a ton you guys!

My recovery is coming along beautifully. I feel better than I have since last spring. The pain that I was experiencing is way, way down. I am walking with a cane but pretty well. My legs are still recovering strength and balance. I have neuropathy in my feet which is a fancy way of saying pins and needles, all the time. It deadens my sense of touch significantly which makes balance a challenge. My lungs are still recovering, my aerobic capacity is limited so I am not quite ready to go out and do hill repeats just yet.

Comments Comments Comments
Thanks to Tom, Anon 8:59, Bikesgonewild and for everyone else jumping in on the political comments. Last week I wrote about my optimism stemming from what is happening in the our country right now as well as for me. The CH and I watched both McCain’s speech as well as Obama’s on Tuesday. It was interesting that even though McCain was very appropriate with his words, taking responsibility for his own campaign’s mistakes, giving credit and respect to Obama, and asking his supporters to do so as well, that the audience still booed when Obama’s name was mentioned. That is the sort of thing that we don’t need right now. I don’t think that there are many people out there that can say that their life is better because of the Bush administrations last eight years. We have a real opportunity to move our country in the a better direction right now. I don’t think that Obama is going to wave a magic wand and fix everything. He is however our President elect and as such I think he deserves at least the benefit of the doubt if not support.

Heck I even believed Bush when he told us there was WMD’s in Iraq. I thought that something as important as the cause for war would be something to be truthful about. What a crock. These are the same folks that spread rumors that Obama is a Muslim.

I digress. Here is what I want to say; I like politics, I like writing about politics, I like talking politics and I got really excited that people were making comments. So lets keep it up. If your opinion is different from mine and other commentors that is good! I want to know what you think. I listen and learn as much as I can. Our country is in crisis and the thing that is going to make change for the better is an engaged population that respects each other and works together, so please be respectful .
Here is an email that was sent to me by my Dad it is allegedly written by Michael Moore. I really liked it because it represents that sense of optimism that I have been feeling. I think there are some out there that are feeling doom and gloom over this election. Well, that’s how I’ve been feeling for the last 8 years.

Wednesday, November 5th, 2008
Friends,
Who among us is not at a loss for words? Tears pour out. Tears of joy. Tears of relief. A stunning,
whopping landslide of hope in a time of deep despair. In a nation that was founded on genocide and then built on the backs of slaves, it was an unexpected moment, shocking in its simplicity: Barack Obama, a good man, a black man, said he would bring change to Washington, and the majority of the country liked that idea. The racists were present throughout the campaign and in the voting booth. But they are no longer the majority, and we will see their flame of hate fizzle
out in our lifetime.
There was another important "first" last night. Never before in our history has an avowed anti-war candidate been elected president during a time of war. I hope President-elect Obama remembers that as he considers expanding the war in Afghanistan. The faith we now have will be lost if he forgets the main issue on which he beat his fellow Dems in the primaries and then a great war hero in the general election: The people of America are tired of war. Sick and tired. And their voice was loud and clear yesterday.

It's been an inexcusable 44 years since a Democrat running for president has received even just 51% of the vote. That's because most Americans haven't really liked the Democrats. They see them as rarely having the guts to get the job done or
stand up for the working people they say they support. Well, here's their chance. It has been handed to them, via the voting public, in the form of a man who is not a party hack, not a set-for-life Beltway bureaucrat. Will he now become one of them, or will he force them to be more like him? We pray for the latter. But today we celebrate this triumph of decency over personal attack, of peace over war, of intelligence over a belief that Adam and Eve rode around on dinosaurs just 6,000 years ago. What will it be like to have a smart president? Science, banished for eight years, will return. Imagine supporting our country's greatest minds as they seek to cure illness, discover new forms of energy, and work to save the planet. I know, pinch me.

We may, just possibly, also see a time of refreshing openness, enlightenment and creativity. The arts and the artists will not be seen as the enemy. Perhaps art will be explored in order to discover the greater truths. When FDR was ushered in with his landslide in 1932, what followed was Frank Capra and Preston Sturgis, Woody Guthrie and John Steinbeck, Dorothea Lange and Orson Welles.

All week long I have been inundated with media asking me, "gee, Mike, what will you do now that Bush is gone?" Are they kidding? What will it be like to work and create in an environment that nurtures and supports film and the arts, science and invention, and the freedom to be whatever you want to be? Watch a thousand flowers bloom!
We've entered a new era, and if I could sum up our collective first thought of this new era, it is this: Anything Is Possible. An African American has been elected President of the United States! Anything is possible! We can wrestle our economy out of the hands of the reckless rich and return it to the people. Anything is possible! Every citizen can be guaranteed health care. Anything is possible! We can stop melting the polar ice caps. Anything is possible! Those
who have committed war crimes will be brought to justice. Anything is possible.
We really don't have much time. There is big work to do. But this is the week for all of us to revel in this great moment. Be humble about it. Do not treat the Republicans in your life the way they have treated you the past eight years. Show them the grace and goodness that Barack Obama exuded throughout the campaign. Though called every name in the book, he refused to lower himself to the gutter and sling the mud back. Can we follow his example? I know, it will be hard.
I want to thank everyone who gave of their time and resources to make this victory happen. It's been a long road, and huge damage has been done to this great country, not to mention to many of you who have lost your jobs, gone bankrupt from medical bills, or suffered through a loved one being shipped off to Iraq. We will now work to repair this damage, and it won't
be easy.
But what a way to start! Barack Hussein Obama, the 44th President of the United
States. Wow. Seriously, wow.
Yours,
Michael Moore

Thanks for reading everyone and thanks for all the love and support you have given me and my family over the last year.

Settling In

2008-11-01T10:07:00.000-07:00

Some things are the same and some things are different. I have changed and so has the family. It is hard to put my finger on the differences but just the fact that the girls have grown makes it different. The Chickenhawk has been on red alert for months and now has to get used to me being independent in most ways yet in the house all the time.

I am just trying to settle into a sense of normalcy. I feel good most of the time but fatigue easily. I've been wanting to contribute to the home as much as possible so I've been looking for ways. Although the CH is a great an awesome chef she has taken to the easy way to keep the family fed during the last few months. Mac and cheese and hot dogs have been the fare. Since I have been home I have been cooking dinners. This evening I made a killer beef stew. Yes, I had help from the CH with a couple things but it was mostly me.

Yesterday we went to the grocery and I shopped for about four meals to make. This is a big deal for me in two ways. First, the trip to the store took hours and I was worked by the time we finished. Second, I don't cook, or at least I haven't for the last few years. In our house there are pink jobs and blue jobs (by agreement) and cooking has been a pink job for a long time. Now things are different and I am happy to do some cooking. It is actually good exercise for me. My arms get a workout from the lifting. I am on my feet for extended periods of time and my balance is improving by leaps and bounds.

I've got my first trip back to Stanford on Monday. My dear friend Janet has volunteered to drive. I am really looking forward to spending the day with her. All of the foreseeable dates for trips down to Palo Alto got filled up by volunteers after I sent out an email to the LoCo care network. I also got tons of phone calls from folks offering to drive. I can't believe how lucky I am to have so many people willing to help me out.

Lately I have been feeling a real sense of optimism. It has been a long time since I have not had to fight to feel optimism, now it just happens. Feeling better has a lot to do with it but there is more. Last time I got political on this blog some of my readers complained. Really, this is not a political blog but I have got to say that with the way that Obama seems to be doing, we are on the verge of a new era. The Bush years have been toxic for this country and it seems to me that there is a real chance for healing for everyone right now.

Home!!!!!!!

2008-10-30T13:33:00.000-07:00

After 55 days of being away I am finally home. Dad drove me to Coloma from Stanford on Tuesday afternoon after the docs gave me the OK. It is so good to be here I have trouble finding words to express it. It is fall and the valley is beautiful. I get to see my girls every day and be a part of their lives again. I am feeling much better than I did when I left; I am pretty much independent around the house. I am just glad to be alive.

Now I work on recovering. That means rest, exercises, walking and rest. The other challenge is re-integrating into the family unit. Lots has changed in the way we do things in the last 10 months and now it is changing again. That is going to take some work. I'll write more about it soon. For now, I am home and I feel like the luckiest man in the world.

That is all I've got for now. I'll be back with more ramblings soon.

Home Soon!

2008-10-25T16:09:00.000-07:00

It is day 46 since I had the transplant. I have been in Stanford since September 5th. Think back on what you have done since then. Me, I spent about 40 of those days in a hospital bed. I had tubes sticking out of more places on my body than I can remember. I have had more than my fair share of chest X-rays and CT scans. Suffered through mountains of pain and a sea of discomfort. I have been on death's door and recovered to the point where I can walk for 15 minutes with a cane and no oxygen. It has been a long hard road. I have had moments of pure happiness and clear gratitude. I feel so overwhelmingly lucky to have been supported so well by so many wonderful friends and family.

Today I walked the one block to the ITA using a very little 02 (2.5L). When I got there I went off of 02 and they checked my saturation. It is at 96% which means that my lungs are recovering. The doctors told me when I got to that level I would be ready to go home. So the plan is that after my appointment at 7:00AM on Tuesday, if everything is still going good, I will be discharged home!

I am, needless to say very happy about this. But there are other feelings as well. I am nervous, I have felt this way every time I have graduated to a new level; when I left the ICU and when I moved to the apartments. I wonder how I will perform. I am still really weak. I am walking, and in many ways better than when I went in to the hospital. I still have lots of fatigue. I am still dependent on help from others. I can hardly wait until I am completely self sufficient to the point where I can drive, or go out by myself. I know, I know, it will come in time.

There is more. I am going home after a long absence. Things have changed, my home is different. My family has been through a real trial. The Chickenhawk has been through every bit of hell that I have and then some more. She has managed a household, the schedule of 5 and 7 year old girls, and the volunteer schedule of 120 people. She did all this while being my primary caretaker for the last 8 months which means that she has not only been caring for me in every way thinkable. Not only that but she has been my advocate, she has learned as much as any non-medical professional could possibly learn about multiple myeloma, fanconi syndrome, diabetes insipidis, pneumonia, sepsis, BCNU induced pnumenitis, hematapoetics, the side effects of countless drugs, the inner workings of nursing staffs, the hierarchy of doctors in a teaching hospital, and the best food to order from hospital cafeterias, made countless trips up and down highway 80, returned many, many phone calls, and written countless beautiful email updates. All while watching her husband go from healthy athlete, partner, breadwinner and engaged loving father to a sickly walker and wheel chair bound invalid who cant muster the energy to play with his kids. It is more than anyone deserves to go through.

My daughters have started school and grown. I have seen them only once in 50 days. They no longer have the childhood comfort of knowing that mommy and daddy will always be there. They have had to learn the harsh lesson that sometimes mommy and daddy have to put other priorities in front of tucking them into bed every night. They know that I am mortal. This is more than a child that age deserves to go through.

Don't get me wrong, I do not feel guilty about this. It is not my fault. It is Cancer. That word, Cancer, has just become more and more evil to me.

I've got two more days here. Dad and I are having a great time. We went out for a meal today, This was first for me in months. Frankly, it was bit too much. Tomorrow Aunt Judy and Uncle Peter are coming to visit and I am really looking forward to seeing them both. I don't have to go anywhere and am looking forward to that.

The battle is not over, It is great news that I get to go home, Once I am discharged, I will have to return to Stanford weekly to visit the doctor. I don't think I'll be able to make that trip on my own any time soon, so I will be looking for volunteers to do the trip with me. Let me know if you might be interested.

Update from Stanford

2008-10-23T15:43:00.000-07:00

I guess I’ll start by bringing you up to speed. I am still at the outpatient apartments here on the Stanford campus. I go every other day to an outpatient treatment center called the ITA. They take blood and do labs to makes sure that all is well. So far everything has been just great. The thing that I am dealing with is the BCNU induced lung inflammation (BCNU is one of the Chemo’s that I had.) I am still using supplemental oxygen most of the time but am becoming less dependent on that. I am also on steroids to reduce the inflammation. The doctors have told me that they want to see me free of the O2 before they will release me home. We’ll see how long that takes; my guess is the middle or the end of next week. I had my hopes up that I would be going home this weekend based on something one of my doctors had said. That is not going to happen though. I am getting used to that sort of progress. I try not to get my hopes up too much…
The Chickenhawk drove home last night. It was time. She had planned to be here with me to the end of my stay but where that end is too vague. The girls have had a rough couple of months and we both really want them to get back to as normal a life as they can have so their mom being home with them is a priority for both of us.
My Dad flew in yesterday for a three day visit. I really think that he was planning on just visiting but the C-hawk and I quickly roped him in to being my caregiver. He has quickly, abley and willingly stepped into that role. The current plan is that he is going to stay here with me until I am discharged to home. It has been years since dad and I have spent some good time together and I am really enjoying being with him.
I am feeling better and doing better every day. Today I walked from the ITA back to the apartment. That was by far the longest walk I have done so far (about a block). I am still getting my balance and coordination back. I was really pleased when on that walk I tripped but was able to catch myself before falling. In a lot of ways I am actually getting around much better than I was before the transplant. Most of the pain that I had before is now gone. I have been able to cut back on my pain meds.
Stories of Gratitude
Way back in August or July when we were planning for my BMT we knew that I would need caregivers to be with me for the entire time I was to be in the hospital. We put the word out to my support group and a number of my friends signed up for dates. David Thomas was one of those folks. He came to stay with me for a week and wow, it was an intense week. That was the week that I was first released from the hospital to the medical apartments. That transition is pretty challenging. Logistically there is a lot of running around that needs to be done. Trips to pharmacies and grocery stores, getting key medical equipment like a walker. Luckily my Mom came in to visit during that period of time so that there were two people to do all the work. David was wonderful. He was completely and totally at my service. He anticipated my needs and provided for them while always cheerful. We talked a lot about our lives and about the world and truly built a real bond. It is a lot to ask friend to spend a day helping you paint your garage. It is a lot more to ask a buddy to spend a week waiting on you hand and foot. David’s volunteering made my life a lot better. I feel like I gained a brother and I think that David would say his experience was worthwhile.

Busy Busy

2008-10-20T20:38:00.000-07:00

I am out again!!! Got out on Saturday. This time we are at different apartments right here on the Stanford Campus. The Chickenhawk is here with me and we are counting the days until I get clearance to go home!
Over the weekend Nana and Papa were troopers to bring the kids down from Coloma so we could visit with them. This was the first time I have seen the girls in 6 weeks. It was great, but bittersweet since I am not ready to go home yet... I just miss them a ton. I have a lot of time to make up with them and I am really looking forward to it.
Yesterday Ronaldo called he was in So Cal and on his way to the Bay Area. He delayed his trip home for a couple of days to come visit us in Stanford. So he is couch surfing tonight and tomorrow night. His visit is an extra special treat since it is totally unexpected and he is so great to hang out with.
I don't have a lot of time to do a long post so I am going to run now. Please know I am eager to get some more posts up in the near future so stay tuned.

Stories of Gratitude

2008-10-08T06:57:00.000-07:00

I awoke again at 3AM this morning with thoughts of gratitude. They didn’t keep me awake like they have in the past but they were there. It is making me struggle; There are so many people that have done so many wonderful things to help me and my family out, I don’t know how to ever acknowledge, let alone thank everyone in a meaningful way. I want to start writing about some of the wonderful gifts that we’ve received but I am afraid; since I am so limited in strength, internet connection and just plain time and memory/ brainpower that I won’t get to everyone. I won’t be able remember everything. I will leave people out, I will hurt feelings. That is my concern. I just don’t think it is a big enough concern to keep me from writing about all the good. What do you think?

I am going to start telling specific stories of how friends have stepped up, joined in the fight and as a result have moved closer to me. I do this because I can’t let it go. I’ve got to write the stories of how acquaintances became dear friends and how dear friends became family. Unfortunately, I am not going to be able to remember everything. Important loved ones giving amazing gifts are going to be left out because I am human. I’m sorry for that but I just have to start telling some of my Stories of Gratitude (SOG).

Auntie Chris, one of the Chickenhawk’s four sisters has sent me at least one get well card a week since last February. Her cards seem to find me wherever I am (even in the hospital) and they never ever fail to cheer me up when they arrive. A card a week… I often wonder if she takes a lunch break every Tuesday and goes to pick out this week’s special card, or if she goes to hallmark once a season and buys all the get well cards on the rack and just saves them up to send weekly. Either way, they sure do cheer me up.

The cards, however, are small potatoes compared to the real help she has given us. Back in late June when I was first starting the BMT process. We had a major caretaker’s scheduling snafu. I was on my way in to the hospital with infections and complications and we needed an extra adult hand around the house to help take care of things. Like a true blue hero sister Auntie Chris dropped everything and flew up from southern CA to run our girls lives for a week while the Chickenhawk took care of me. We had no worries about the kids they were in really good, loving hands. Thanks Auntie Chris.

Quick Update: I am getting out of the hospital today and moving to "outpatient" status. I will be living in temporary housing near the hospital and going in for daily infusions of whatever I need to keep the healing going. This is a major graduation. I have been in the hospital since September 5th. Today will be the first time I've been outside in all that time.

David is my caretaker right now and Granny is visiting. More details soon. I am recovering well. I am ready for the transition but a little nervous.

of caretakers, timing, gratitude, and life.

2008-10-06T17:51:00.000-07:00

It is already 4:30 I cant believe how much it seems like I do in one day. Of course I am moving at the speed of an 80 year old. There is so much that I have to do in a day. Most of it is daily living stuff that is not worth writing about except to say how long it takes me to get things done. My body is slow and swollen from weeks of lying in a bed. My mind is often numb from a feeling of hypoxia. For about a week I have been back on the BMT unit. During that week one of the goals has been to get my body functioning on its own. A big challenge right now is to get my heart rate, blood oxygen content, and blood pressure in sync so that I do not feel short of breath as I move around the room or even just sit in the bed.

I have been waking up at 3 AM and having trouble getting back to sleep. Why? Because I am overwhelmed with positive feelings; I am coming home, eventually. Don’t get all excited there is no date set. I just can feel it coming. I can hardly wait to be at home with my girls, I miss them very much. The thought of coming home, and recovering, actually recovering is so wonderful that I can hardly stand it. For the last year it seems like I have had nothing but bad news. Every time I talk to a doc I brace myself for bad news. But lately I am allowing my guard down. They have been giving me good news: kidney function is looking good, the bone marrow transplant is working. More importantly, my body is feeling better. We won’t know how much cancer was killed through the process until I am about 100 days into it. So no real numbers yet. But the bottom line is that I feel great.
Today is Monday and I have just finished two great days in a row. A great day is when I feel like I am making progress towards recovery. The progress is always that frustrating two steps forward one step backward. The big challenge that I face is to keep my attitude positive when I hit the backward step moments.
That is where my caretakers are such a big help. Through all of this I have had someone by my side. Katie, Brother Billy, Adam, The Chickenhawk, and currently David have been here, by my side helping me to keep head straight like the bars that surround the bumper cars .

There have been various phases in the last month of hospital stay earlier when I was really sick and hallucinating the C/H was there for that. The next phase is when I was just really really sick and getting worse, Dr. Katie was here for that. Then there was the phase where I went to the ICU and started to s l o w l y get better, brother Billy was here for that. Then Adam came for the end of the ICU stay where I woke up from a couple of weeks of fighting for my survival to find a world that dared to go on without me. Now David is with me. Soon I will be moving out of the hospital and into local outpatient apartments where I will be out of the warm, cozy hospital bubble. Each of the care takers seemed, in retrospect to have the perfect timing for dates that they commited to compared to what actually happened. I am so, so grateful to them for the love care that they have shown me that I don’t know what to do other than accept the love, turn it around and pay it forward.

Shit, and piss, and phelgm

2008-09-30T18:49:00.000-07:00

Fuck Cancer. Fuck cancer for rippin’ my life apart. Fuck cancer for taking away the time that it has stolen, and fuck cancer for taking away the normal course of my life and time with my family.

Yeah, I’ve had to give up a lot to be a cancer survivor. They say there is a silver lining to every big sickness, and well, I see good things that have come from this but nothing that outweighs what I have lost.

I’ve been in the hospital since the 5th of September and the vast majority of the time has been really rough.. Been in the ICU since the 26th and I haven’t stood up since probably the 25th, just haven’t been out of bed.

The whole time I have been here I have someone by my side. Sarah then Beth Rypins for a day then Katie Rutherford was with me during the worst time, the lowest of lows. Then brother Bill arrived as I started to improve and he did wonders to improve my attitude. After Billy, Adam showed up and kept that good energy flowing. Adam has been a great friend and has been a real source of great strength for me. So after feeling some real lows I am finally on an upswing. I am sitting up, having conversations. In fact I am dictating this to Adam and that shows that I can almost form a clear thought.

I see the next big challenge as working on physical strength and I’m really nervous about it. I wanna find out how low I’ve gotten and I’m afraid of all the work I am going to have to do to build back up. I already feel like I’ve done a lot of hard work and that’s going to be even more hard work.

This has been unbelievably hard, the hardest thing I have ever done, beyond my imagination. I don’t think I could have done it without the support of my family and my incredible friends. Right now I am looking at the photo taken at my going away party. It is a blown up group shot and I see it as just a portion of the people caring for me but representative of all the people who are involved. It feels like you have all watched me thru all of the moments of shit, and piss, and phlegm, and suffering. I can always feel the gaze of everyone as I have gone thru all of the suffering. It feels like an amazing supply of love and support. They give me a lot of drugs around here as you can imagine, but that photo has been the best drug of all.

Adam and I have been having a great time with political discourse. Here’s the room rule…anyone who comes in, nurse or doctor, is immediately grilled by Adam as to who they are going to vote for. If they say Obama they can stay, and if they say McCain they are gonna get the boot. As a barometer we haven’t had to boot anyone yet.

The staff care has been amazing. Love and concern, and friendliness. Woman like Marika, Julie, Dana, Brandy, Cathy, Crystal, Shannon, Inna, and C.C.

Today is a landmark day. If everything goes right I am moving out of the ICU to the BMT Unit. New place new rules. The great thing about the BMT unit is that they are specifically designed to take care of people who have my condition. Goodbye catheter and goodbye to a bunch of wires that are coming out of me.

Back in the big house

2008-09-09T09:43:00.000-07:00

We got to Stanfor on Frday. By now I am done with those last two baatches of CHemo and now allI have to do is get me Blood cells back. So they say today in my newbirthday. They havent started that proceedur eyou but have given benadryl, zoporan, I am mostly so woozzy that I just sit with my eyes clos.d
this is a close too drunken writing for some time. WHimsial, merryment and chuckles all around.
But seriously What is the fasts sparrow? Well here it goes. Hopefully from here ion out no comploiations and all healinjg.
Thanks for putting upo with the sloppy typing. On another note, Sarah and I been particlalry gwoderful things thjat you've done to make our lives easier.

Probably My Last Post Before the Transplant

2008-08-30T13:21:00.000-07:00

The chicken Hawk and I made the long trek back to Palo Alto and the Stanford Cancer Center to do the final checkup before we do the last step in the process that I have been working on all summer: the actual transplant. Thus far the process has been much harder on me than it is on most people. I have ended up in the hospital and feeling really sick for the two rounds of apherisis (removing the stem cells that they will put back into me next week.) Most people do all of that as out patients but I have not responded as well.

However, on this last cycle we have figured out why that is. My kidneys are much more damaged than most people. That causes me to have sever electrolyte shortages. The symptoms of these electrolyte shortages look a lot like a violent reaction to chemotherapy; extended nausea, diarrhea and general sickness. This imbalance is called Fanconi Syndrome. Since the last time I was in the hospital we have learned how to control the symptoms of the fanconi syndrome really well with me taking about 70 electrolyte tablets a day. As a result I have been feeling better and better since the last time I was in the hospital.

So we went to Stanford, I did a series of blood tests, a chest X-Ray, and an EKG. All of those as well as several test that Stanford asked me to get through Kaiser including a 24 hour urine test and yet another Bone Marrow biopsy (I hate those) show that my Fanconi Syndrome has improved and that I am doing better.

After doing all the tests we met with Dr. Miklos, my BMT doctor. Both the chickenhawk and I were expecting a surprise from him, he always seems to have a surprise for us, this time he didn't disappoint. He told me that based on my tests, I still qualified for the procedure, however, he wanted to inform me that he was very concerned that it was going to be particularly hard on me with increased danger to my recovery. His opinion was based on my performance thus far. He reminded me that I do not have to continue with the treatment, but...

BUT now that I have developed a blood clot in my leg, I am no longer eligible for the most popular other medicines that they would treat me with. There is basically only one medicine left that I can take that is safe for people with clots. Furthermore, when I start the BMT I will have to go off of the anti clotting medicine that I'm on now, so I have an increased risk of a pulmonary embolism (very bad).

I am faced with the choices of going through with the transplant or waiting indefinitely while trying that one med (over the course of many months). There is a chance that that med would work and put my cancer into some sort of remission. There is also a chance that during that period of time I will get sicker, ie: fanconi gets out of control, I get another blood clot or the cancer progress so much that I no longer qualify for the a transplant. The transplant on the other hand is going to be really, really hard. Potentially life threatening. I really don't think that the doc would allow me to go forward if there was a good chance that transplant was going to kill me.

I feel like I am on a difficult Class V river run and am scouting a big, bad rapid. I can get out of my boat and walk around the rapid, or I can run the rapid and face the dangers that are there. It feels that if I choose to walk (wait, take the meds and do the transplant later) that I am wasting time. I have been sick for a long time and am really tired of it. I want to take the quickest path to good health that I can. I want to move on and find out what is on the other side of this transplant process. That means that my choices is to run the rapid. To go in and do the transplant on Friday. It will probably be hard, I will be really nauseous again. I will loose all of the 20 pounds that I've put back on the the last 20 days. I'll feel terrible. I'll loose all the hair that I have grown back. I will have excruciating mouth sores. I'll be exhausted. I'll be stuck in the hospital for about a month (maybe longer). But that is what I am going to do.

I will not feel like writing blog posts for a while when I am recovering so all the news will come from Sarah and our LotsaHelpingHands, Loco Care website. I am intentionally keeping that private, so if you know us and want to be in the loop just call or email Sarah and she will tell you how to sign up for that if you haven't already. If you don't know us personally, just know, I'll be back and writing a post as soon as I am able.

Thanks to everyone for your support and good wishes. It means a ton to me. I will be reading the comments below so keep me posted about the cool stuff that is happening in your life.
Thanks for reading.

Couch Time

2008-08-18T09:30:00.000-07:00

I've been doing some serious couch time this summer. I spent the whole Tour de France on the couch and at this point most of the Olympics. I am on the couch as I write. It is a good couch. We bought it a couple of years ago at Ikea. It is leather, long enough that I can lie down and comfortable for sitting up. It is starting to feel like an old friend. We've spent some good and some bad times together and it is always there to hold me up. The good news about getting to know the couch so well is that I am able to get out of bed and make it to the couch on a daily basis.
Maybe, if everything goes well, in six or eight months, I will be renewing an old relationship with my road bike and the couch's cushions will be recovering from bearing my weight for so long.

I continue to feel better. Nausea and pain are still my biggest challenges and both are under control enough that I am able to eat and move around the house pretty well. At my lowest weight in the hospital I was down to 141 lbs. I weighed in on Friday at 155, so I am doing my work. It would be nice to put on another 10 before I go in for the transplant on Sept 1. So I'll keep eating Ben and Jerry as I sit on my couch.
My energy is fading so it is time for me to sign off. See you soon. Thanks for reading

What I've got

2008-08-09T15:52:00.000-07:00

Well, we made the trip back home last night. I rode with Brother Billy and Sister Jay last night. I got discharged from Stanford in the late afternoon and we went to Thomas' house to wait for rush hour to finish.
It is great to be back home. Brother Bill and Jay are still here and the Chickenhawk is at the gym and off doing some grocery shopping. We watched the Olympics for most of the day. I am feeling a lot better than I was a couple of days ago. With the help of meds, my appetite is back and I am eating as much as I can and regaining weight.
My biggest challenge is my kidney condition. It got diagnosed about two weeks ago as I was entering the hospital. It is called Fanconi syndrome. The problem is that I am spilling all sorts of critical electrolytes in my urine. I drink about 8 literes a day and pee as much if not more. I am always thirsty, I have to pee about every 20 minutes. This has been going on for some time, and slowly getting worse. Until it was diagnosed, I was feeling worse and worse with more and more nausea, etc. We thought that I was just having more adverse reaction to the chemo than most folks but it was more than that, I was dangerously low on certain electrolytes.
When I was in the hospital the doctors first managed the imbalance with IV fluids. That was great for getting me back to health. Now however, I have to manage myself with pills. I haven't actually counted all of them, but I take one particular electrolyte, eight pills, four times a day.

The prognosis for the Fanconi syndrome is mixed. Some of the docs are telling me that I may have this condition for the rest of my life while others are telling me that the BMT msy cause the problem to slowly go away.

In addition to that, I have a blood clot in my left leg/ hip. My leg is swollen about 1/3 of regular size. The doctors have put me back on anti coagulation drugs and we are hoping that will cure the problem. There was some talk of removing the clot through an interventional procedure but we decided not to do that since the dye that they need to use is bad for my kidneys. At this point I need to protect my kidneys as much as possible.

So, I am home. I am happy to be here. The girls are coming home tomorrow after a month in OR (thanks again Shalyn, Lance Nancy and Charlie). The chickenhawk and I are really looking forward to seeing them. We miss them terribly. It feels great to be out of the hospital. I was in for 11 days and I hope that is the most time I ever spend in one again. It is great to be alive!!
Thanks for reading.

Rumors of my demise are greatly exaggerated

2008-08-02T19:50:00.000-07:00

Since the chickenhawk is typing for me right now (verbatim -ed) we'll make this short and sweet.

I am alive.

I checked into kaiser hospital on Tuesday feeling crappy from the latest round of chemo. It was a dark couple of days that I hope I never have to repeat. But I've turned a corner, took an ambulance ride from Roseville to Stanford, and I am geting my strength back and uh (burp) at my new digs. I am really tired, I have lost a lot of weight, and my focus is on learning how to eat whole food again, gaining weight, and getting healthy for the transplant. (my mouth is getting sore, let me take a sip) My uh lack of communication has been intentional; I have to focus on myself right now. I appreciate all the love and support. I love the comments and savor all of them. (Um) I'll let you know when I'm ready fro phone calls and visitors. (Um) All detailed information is going through Adam Forest, my team captain right now. Please contact him for questions or concerns.
Love to all of you, thanks for the support and kind words.
Love, Spencer

catching up

2008-07-16T09:18:00.000-07:00

I have written a couple of posts in the last 10 days that I have not been able to find the energy to post. It has been a rough 10 days but getting better now. The kids are up in Oregon with their Aunt and Uncle with Grandparents assist. The Chickenhawk has focused all of her attention on helping me get better.

For my part, I have been battling nausea. The fact that I am posting should say a lot about how I am feeling. I have the energy to sit at the computer and write. That means that I have been able to keep food down. Two or three days ago we went to the ER because I was not able to keep water down. They put me on fluids and gave me a good prescription to zoforan which seems to be the only drug that really curbs the nausea. We knew that but all of the prior prescriptions that i had got for the drug were for one or two days worth of pills. So I would run out and start barfing all over. The ER doc figured out how to override the computer default that got the short order and we are off to the races. In the last couple of days I have been able to eat solids like cereal and a bowl of pasta. Last night I even had a bean a cheese burrito! I have also acquired a taste for Sprite. I never was a soda fan until now, I cant get enough of the stuff.

So the last 10 days was really hard but I had some great visitors during that time. I have felt really rich in friendships with all those that have taken time to visit with me. The time has gone quicker and moreover, I feel a sense of my worth in the world in spending time with my good friends.
I am going to cut this post short since I feel my energy fading.
Thanks for reading.

I am still in the fight

2008-07-06T10:25:00.000-07:00

As I go back over this post I realize that my brain is not working very well at all. I have lost the ability to write in such a way that really brings my reader along for the process. I apologize. Below is what I have managed to put together for you.

I have been away from Internet accesses for a long time. After my last (2 second] post. Here is what I have done.

1.Long drive home with Granny doped out of my mind on anti nausea and dope drugs.

2. Spent several (a couple) very nauseous days at home doing daily injections to increase white blood cells for harvesting.

3. Ate very few solid foods

4.Went from too skinny 163lbs. to scary 148.

5. On Tuesday night got a fever, went to the ER at Roseville and spent Wed. thru Sat in the hospital.

The hospital was great. Lots had been going on at home. Granny had flown out to help me thought this (First) two and a half week phase of the BMT. However, before she left her hubby came down with some very scary symptoms. Granny stayed good to her word and flew out to help me thought the first part of this phase, going to Stanford for a Chemo injection. While we were in the middle of Chemo her hubby went in for a biopsy. The biopsy came back with some bad news and Granny rightfully flew home to start the hideous phase of determining how bad her beloved husbands cancer is. Right now we are waiting for more results but either way he has got cancer and my best goes out to him. No one deserves this mess and in seems more and more to me like the ones that deserves it the least get it.

Anyhow Granny leaving left us in some significant need. Her jobs was to take care of me. The ChickenHawk got on the phone and got sister Cris (aunt Cris) AKA little blue scwhinn on the message board. Cris hopped the next plane from SoCal and jumped in as full time kid wrangler. She is one of best kid wranglers this side of the Rockies. She took the kids on lots of great local outing while making sure they had lots of fun time at home. Cris you helped us immensly in a real time of need. There are very few people that could help the way you did and we can thank you enough. Mike thanks for letting her come. It was huge for us.

I started writing this post yesterday while I was having the first round of stem cells removed from my body in a process called aphersis. It took me one day. I now have a two week break before I start the process again. (A big chemo Injection) then daily injections to boost my White cells. Feeling like crap. Breathing through a filter and eating special foods.
najor nausea. This is all stuff that I have had to do for the last two weeks so I am feeling relieved that I don't have to for now.

I spend my time combating anxiety by telling myself that the fears that I feel about eating and living were created by the Chemo that I took 12 days ago. Most of those side effects are out of my body and I can live my life again. That is mostly working and with the help of Ativan I am almost all the way there. That means no more basket case until we start the whole thing over in about two weeks. That is OK I've got two weeks off. I am going to try to eat and exercise as much as possible for the next two weeks.

So right now it is very quite around the house. The kids are in Oregon for the summer and we miss them dearly. I want to take this moment to reach out an say thanks to all that have helped us so far with meals, planing, babysitting, housework, logistical support, driving, spotting me, dancing with Sarah, and so many other things. I am at a loss how to say thanks. While I was in the hospital I spent a lot of time alone and it was really good for me. I enjoyed it because I got to think of all of my friends; what you are going through right now, what you are working on, your successes, your challenges. I am really proud that I know you. You are the fuel that burns my inner fire. So do me a favor, in the next two weeks, send an email, give a call, leave a comment. I want to know what is going on with you!

Thanks for reading and again I apologize for the scattered writing

FIrst Night in Stanford

2008-06-25T13:02:00.000-07:00

I am riht now wwaiting for granny to come find me. We got kicked out of our room because my roomate needtio many peopeple i there with him and it wa time for us to go. SHe took an extra run downwn to the care and I foung this open termial to do a post. I am feeling hamered but OK as ther first round of narly Chemo wnet in. We are about to driv back to COloma 3 hours if we are lucky. See ya. More soon.
S

It is Starting

2008-06-16T09:04:00.001-07:00

Tonight we make our first run down to Stanford. I have appointments all day tomorrow so we are going ahead of time. More appointments later in the week and then the real treatment begins a week from today. I will be at home for most of July and the first part of August and then in the hospital for late August and most of September if everything goes right.

I feel as though I am entering uncharted water. I don't really know what to expect other than it is going to be really hard and probably pretty ugly. I don't know how I am going to respond to each of the different phases of the treatment. Am I going to be more tired, more nauseated, more weak? No way to know without doing it. My plan is to keep doing what I have been doing. Take it day by day and be as grateful as I can for what I've got. I feel really lucky that I have an old friend Thomas who lives near the hospital that has opened his house to me and my care takers. That is going to be a huge help.

I am still feeling pretty good as of late. The pain in my hip/ leg has gone down quite a bit and I am getting around really well. In general physically I am feeling good. I am just feeling nervous about the whole BMT process. I just really hope that it produces results. Only time and effort will tell. I have plenty of energy left for the effort. I wish there was a way to speed up the time and just get it done.

That's all I've got for now. I'll check back in when I get a chance. Just know I am going to be pretty busy for the next two weeks.

BMT Details

2008-06-10T17:22:00.000-07:00

So we are pedal to the metal around here getting ready for the BMT. Stanford had a bunch of tests that we had to get done this week in order to start the the BMT next week. Luckily it had been planned months ago that the kids would go to Aunt Kathy's house for the week so it has been really easy for us to come and go as we please only taking care of our own needs.
I have been feeling really good for the last couple of days. Pretty much the best I have felt in a long time.
Today we went in for a bone marrow biopsy. Not fun. First they numb you up with lidacane Then they stick a needle in your back right at the crest of your hip bone and bust through the bone and into the marrow and pull out a little chunk. The lidacane works for everything except when they hit the bone and the marrow and then it hurts. It went pretty well. I actually walked in to the appointment and walked all the way out as well. First time I have done without the wheel chair in a long time and it felt really good to be under my own power.

Tomorrow I have to go back down for a pulmonary function test. Not sure how that works. I have a feeling I would have got high scores this time last year though. I go back on Friday for my regular once a month Chemo session. Not looking forward to that but it is part of the deal.

Next week I have a couple of meetings scheduled down at Stanford. It is a 3.5 hour drive if the traffic is not bad. If it is bad.... It could be really ugly. Then the BMT process begins the first part of the week after next. I say process because that is what it is. I have an overnight in the hospital where they give me a chemo injection. Then I am turned loose for a couple of weeks where I give my self a daily injections of a white blood cell booster. Then I go back when the time is right to have the bone marrow and stem cells removed from my blood. That takes a couple of days and then I go home and rest for two weeks. Then that process starts over again.

It wont be until late August that I actually get the bone marrow transplant. At that point what they really are doing is giving me a lethal dose of chemo drugs with the idea of killing all of the bad cancer cells. Then they rescue me with the stem cells that they took out earlier. At that point I am in special clean medical apartments provided by Stanford. My immunity will be non-existent. I'll spend at least a month in there with the help of my mom (Granny) if not longer that all depends on how I recover.
If everything goes perfectly I will be symptom free at the end of that process. I will take another couple of months (they say 3-6) to recover. At the end of that I am really looking forward to going back to my normal life. Starting work again. Riding my bike. Roughhousing with my kids cuddling with my wife.
I have a feeling that this is the beginning of the end. We'll see.

Game On

2008-06-05T08:51:00.000-07:00

The Onclogist was eqaully unhappy with the latest labs. It is time to do soemthing different. He consulted with the doc at Stanford and they decided to go forward with the Bone Marrow Transplant. We got the call yesterday from Stanford telling us that was the case. They told us they would put a schedule together by the end of the week. It was in the Chickenhawks email by the end of the day.

Things are starting soon. We had hoped to pre-plan as much of this as we could but it is still going to be a last minute scramble. It is going to get really busy for us towards the end of this month. So here we go.

I am feeling excited to be moving forward and doing something other than waiting for drugs to work. I am also scared because the BMT does not sound like a walk in the park. It sounds pretty miserable really. But it is the best way too get back to healthy quickly that I can see so I am eager to get on with it. It is also going to be hard because I will be so helpless for such a long time. Not that that is much different than how I am now. Either way come the start of the TDF and I'll be working on the first parts of the BMT. It sounds like the process is going to take a few months all told.
Wish me luck.

New News

2008-06-03T10:15:00.000-07:00

Doctor KT called last night. The new numbers are in on my kappa free light chains (the key measurement of cancer cells) The news is not great. They have gone down but only 100 points instead of the 400 points that they went down last month. We knew that there is no such thing as a trend with multiple myeloma. It is erratic on each person that has it has a different disease and responds differently to the treatment. This is frustrating. I was really hoping for more but it is what I get.
We go to meet with the oncologist this afternoon. I don't know if this new news will change his recommended treatment. I am thinking that is a possibility. It is also a possibility that they'll want to speed up the timing on the BMT. We'll see.

A big mistake and step backward

2008-05-29T15:47:00.000-07:00

This whole experience has been the two steps forward with one step backward from the beginning. This week was a big step backward because of a stupid mistake on my part. On Mondays at dinner time I take my dexamethazone. I take 10 pills once a week at dinner. This last Monday was a debacle. KT and Bill were over for a Memorial Day BBQ and we were all feeling good. I ate a big meal and then remembered to take my dex. I had just gotten a new refill of the pills since I had recently run out so I was opening a fresh bottle of the pills. I asked the chickenhaawk to hand me the pills. She handed me the bottle, I counted out 10 pills and took them. I noticed as I was doing it that the pills looked different than before. There was a nicer coating on them with a different color. What I didn't realize is that I had the wrong pill bottle. I ended up taking 10 compazine which is an anti- nausea med that I have only taken once before so the pills didn't look familiar. I did not realize the mistake until it was about 10 minutes too late.

I freaked out, I jumped up and started to panic like I have never panicked before. KT calmly called poison control and did doctor talk with the person on the line. They determined that I was not going to die and that I did not need to start barfing. The side effects were something that I would just have to deal with. So I have spent the last few days unable to walk due to muscle spasms, sleeping due to fatigue side effects and fighting off nasty anxiety attacks which which is also a side effect. It has been a terrible trip back to the early days of the cancer process. I am again coming out of it again but it has been a real drag. I had to put off a couple of appointments that I had planned on doing including the bone scan on Tuesday and I did not get in to do my monthly lab work until today.

The good news from this week has been getting to chat with both Louis and Janet who are just back from their sailing adventure/ honeymoon. You can read their blog here. They have had the good fortune to do something that I have dreamed of doing for most of my life. They were gone when I got the news about cancer and have kept in touch from the Caribbean the whole time sending me all kinds of pick me up items from that beautiful place that I am so looking forward to visiting again when I am feeling better. Janet came over to spot me on Tuesday when the Chickenhawk had to be out of the house and Louis came today and drove me down to kaiser for my blood draw. They are both so great about entertaining my vicarious excitement about their new cruising lifestyle. I'll put their blog up in my blog roll. It is well written and entertaining.

I have to say thanks yet again to the chickenhawk. In the last week I have been more dependant on her care and she has been great about taking the extra care of me. She has stepped up without complaint and done everything that I couldn't do for myself.

The artwork for the new Velo LoCo Jerseys is in. I will try to post that artwork. I am not sure if I am going to be able to do it so bear with me. Matt is taking orders for the Jerseys and will be coordinating information through the old Velo Loco Blog . If you are interested in getting a jersey and have not emailed Matt yet give a shout out to him soon.

Thanks for Reading.

and remember always double check your pill bottles before you take your meds.

Glacial Progress

2008-05-24T16:58:00.000-07:00

On Monday I started my fifth pack of thalidomide. I have completed four months of frontline chemotherapy. Four months since I was diagnosed. Four months of fighting. It has easily been the worst four months of my life. But the good news is, and there is no denying it, I am getting better. The progress is glacial but almost every day I feel just a little bit better than I did the day before.

I will go in to get my monthly lab work done next week that will tell how well the frontline therapy is working. I don't expect to have the results of that lab work until the week after next but my guess is that there is going to be an improvement. It is hard not to get my hopes up over that test, it really is an indicator of what my life is going to look like. I hope I am not setting my self up for disappointment here. I have always trusted what my body tells me and right now it is telling me that it is feeling better.

Last week my doctor increased my pain medication prescription. I have yet to take the extra medication. The nature of being on narcotics for a long time is that you build up a tolerance and have to keep upping your dose to get the same result. I upped my dose once about 2 months ago and have not had to up it again. Last week I came close to taking the bigger dose but I held out. Now I am glad I didn't. That is part of what makes me say that I am feeling better. I hope that in time, I'll be able to decrease the dosage.

The new news about the BMT is great. The doctor at Stanford said that he wants to see two more months of those monthly tests so the earliest that we can start the BMT is early July. My guess is that it will really start by mid July. We'll see.

With the incremental progress I feel more and more hopeful. I am starting to see a light at the end of the long dark tunnel. It is very faint and distant but it is there.

News and Jerseys

2008-05-21T10:18:00.000-07:00

I am feeling really quite good lately. I had a massage from Heather F on Monday and that just pushed me into a place of less pain and more mobility than I have felt for a long time. I have a new mantra that seems to be working. It goes like this:

I am ready to feel good

I am ready to be pain free

The cancer is leaving my body

I am returning to normal.

There is not a lot to report on the medical front. I did have IV Chemo again last Thursday. It went a lot better than last time I was only sick for about 3/4 of a day instead of 4-5 days. There was a big fiasco with it though. The new Chemo that we switched to takes 2 hours instead of 1/2 an hour. However the doc forgot to tell the Chemo nurses about the change and it looked for a minute like we might have to come back at a later date. That was a big problem. The chickenhawk works really hard to schedule child care and all of the needs of the family when I go in for Chemo. If she would have had to re-do that it would have been a major problem for her. The chemo nurses were cool, they made the doctor beg and then we went ahead and did the infusion, no problem. Poor c/h though, she was really upset.

I am not sure why I am feeling so much better. It might be because the frontline therapy (oral chemo) is really working and kicking in. It might be because I am taking some new phosphorus supplements and it might be a combination of all of the above. Whatever it is, I'll take it.

I am worried about my left femur these days. I have been feeling more and more pain in the hip there and there has been some pretty bad bone loss from that area. My fear is that I'll break that leg. That would put a real damper on my recovery, not to mention my quality of life.

So we went to see the Radiation Onclogist today to see if there is anything that can be done about it. He does not see a tumor there to aim radiation at but many of the images that we have are from back in January or February so we are going to do some more testing, CT Scan, and bone scan as well as X rays etc. Fun stuff. I do feel like I am getting really good care though.

Jerseys

For the past two years I have had custom jerseys made for my riding group Velo Loco. This year I haven't had the energy to do that. I've been busy you know... This year is going to be different. I have asked Matt Barnes to help me out with a new Jersey project.

In the past the jerseys have just been available to the Velo LoCo riders. This year we are going to do the jersey's as a fund raiser to benefit my foundation. So they will be available to the general public. Here is what they looked like in the past

This year we are going to do a redesign. I will post artwork as soon as I have it finalized. The new jerseys will be the same blue color with the same double stripe on the sleeve there will still be the patch on the shoulder that says 49 which is for Highway 49 that runs from Yosemite north through the Coloma Lotus Valley and up to Tahoe. The big white stripe in the middle will be accented top and bottom by thick fight-cancer-yellow stripes. Under the words "Velo LoCo" in a smaller font it will say 'puddin riders'. On the pockets in the back in big yellow letters it will say: Ride Hard, Fight Hard!

We are using a great custom Jersey Company called Champion Systems. They are the same company that I used for last year's jersey. I have been very happy with their quality. The owners of the company have been touched by cancer and are very supportive to my cause. They make jerseys for much of the pro peleton including Toyota United and Jelley Belly as well as others. They fit snug like a good jersey should, they are full zip and they are relatively inexpensive compared with many other custom jersey companies. Cost for the Jerseys will be in the neighborhood of 70-75$. I am looking at selling them using a paypal account.

The proceeds of the sale of these jerseys will go to my foundation. I will use the money for several purposes. First off I will cover the un-reimbursable expenses of my upcoming Bone Marrow Transplant which will include travel and housing for myself as well as my care takers while I am away at Stanford. I will also use some of the proceeds to make sure that my kids are well cared for and entertained by family and friends while I am away at the BMT. After that I plan on using any left over funds as seed money for LoCo Care.

I have written about LoCo Care before. My vision for LoCo Care is a community assistance organization designed to help out folks in the extended Lotus Coloma Community that suffer from catastrophic events.

If you are interested in getting a Jersey I would greatly appreciate it if you could email Matt Barnes. I am going to spell out his email address so you that the spamers wont pick it up. You will have to add the @ symbol instead of the word "at" and make it all one word like a proper emaill address here it is:
barnesmatthewf at yahoo dot com.
Get it?
This is not a commitment we are just trying to get an idea of how many folks will want to get a jersey so that we order appropriate quantities. Please tell him if you want a women's or a men's jersey and what size you want. Again they fit snug so whatever size jersey you regularly buy is the size you'll probably want to get. Please realize this is not a final order this is just us trying to get an idea of how many people want the jerseys. We will set up a real order form with paypal in the near future. If you just want to donate money to the cause there will be a way to do that without buying a jersey please check back in about that.

OK that is enough for now. thanks for reading.

Last mintue news. The doc fromm Stanford just called. We are looking at starting the BMT in early July! Not as soon as we had hoped for but now we have something to schedule around.

Goal and Objectives

2008-05-13T14:51:00.000-07:00

I learned a long time ago that I do best when I set goals for myself. If I set a goal then I have something to set my focus on achieving. To that end, every year at the beginning of the year I write goals and objectives for myself. The goals are the things that I want to accomplish in the course of the year and the objectives are the things that I can see that I need to do to accomplish those goals. I find that I also do best with getting those things done if I share the goals with someone else. That makes me feel more accountable. I may be willing to blow off my own goals but telling someone else makes me more accountable to my goals.

This year when I was writing my goals I couldn't focus. My body was in a lot of pain I was recently unable to ride my bike and all I could think of for a goal was to get out of pain and get back on my bike. I didn't yet know that the reason I felt so bad was because I had cancer running wild in my bone marrow. What I did know was that I couldn't focus on achieving anything else until I had a plan for how my body was going to get better.

I felt guilty because I usually write goals and objectives that cover all aspects of my life not just my physical being. But things felt so out of balance with my body that it was all I could focus on. I could not write goals about my career or my family or about what big rides I wanted to do until I could find out what was happening to me.

Now it is five months later. I know now while I felt so bad. It was a relief to finally find out what was wrong with me. It gave me an answer to a mystery and it gave me something to work towards. Now my life is almost all about fighting cancer. I really don't have time or energy for much else. But the difference is that I have a plan that I am working. I am doing the treatment that was worked out for me by my doctors and it seems to be working. That gives me a little extra brain space to think about the other things that I want to do.

I'll be frank, I don't have much energy to do much more than fighting cancer but I do have a lot of time to think. That gives me plenty of time to think about what I want to accomplish. Most of the things that I think about are things that I will do once I start feeling better.

One of the biggest goals that I have is to go sailing again. I am going to go sailing in the British Virgin Islands with my family. The chickenhawk and I went there in 2005 and I had a really really good time. This trip is the carrot that I dangle in front of my face to keep me working forward day by day.

Beyond that I am starting to formulate some other goals. First off I will get back into shape. I don't really know what a reasonable expectation is after putting my body through this "treatment" but I am going to get back in to the best physical shape that I can possibly get into. I am going to start training again.

A few weeks back I started to envision a big bike ride. A really big bike ride. I started to envision a ride across America. I don't yet know how I can do something like that. Heck, I don't even know if I'll be able to ride a bike. Nevertheless, I am thinking that one of my goals may be to ride across the USA. One of my other big goals is to help other people that have multiple myeloma. I had never even heard of multiple myeloma before I got it. I want to make people aware of the disease and I want to do what I can to help fund research into treatments for multiple myeloma. Those two goals seem to be made for each other. I am picturing a ride across America to bring attention to my disease and to perhaps raise some money for its treatment.

I learned a long time ago that setting reasonable goals is the key to getting them done. If they are too huge then they don't get done and I feel bad about it. So I am not going to call it a goal yet because I just don't know if it is reasonable. But I am going to keep my eye on that idea and work on finding a way to get it done. If I get to the point where I can see it getting done then I will do it.

On the family side of my life, I want to spend some real quality time with my wife and kids. This cancer battle has really knocked a big hole in our previously happy life. I have felt very disconnected from my kids and I don't like it. I really want to get back to a situation where we play together and I can be more active in parenting them. I want to spend some good quality day to day time with them. More than I used to.

And with the chickenhawk, I want to go back to being her partner instead of her patient. I want to contribute to the work that needs to get done and more. I want to show my gratitude for everything she has done for me.

I have other goals that I'll keep posting about them over time.

Great Info

2008-05-13T14:15:00.001-07:00

I am listening to a podcast by This American Life titled Giant Pool of Money. It is the story of how the Mortgage Crisis happened. It is a fascinating story. When I stopped working and became a cancer survivor, I worked as a mortgage broker. It is a great job, I love it. I have always, in the 7 years that I did the job stayed away from Subprime mortgages. In 2003 - 2005 there was a lot of pressure in my industry to do suprime loans. That is because everyone that should have got a mortgage did. Home ownership was at an all time high and home builders were going nuts building more homes for people to buy. Home values were going up and up and frankly, I became worried that the party would end in late 2003. So I stayed away from risky business and focused my energy on doing a good job for good people. For me that meant that I ethically couldn't go out and find people that could not afford a mortgage and sell it to them anyways. You see if you listen to the podcast, which I really hope you do, lots and lots of people were doing this and making lots and lots of money. I passed up a chance to make crazy amounts of money so that I could count on being in business for a long time doing the job that I liked. I am glad I did.

The podcast is really good go download it now it is free this week and after that you'll have to pay for it.
If and when you do, chime in on the comments if you like.

Steppin Out

2008-05-09T16:07:00.000-07:00

Friday Night is the Chickenhawk's night off. She works really hard all week taking care of me and the kids. She makes a million decisions and answers to a billion calls of ...mommy! On Friday night she is done, cooked, and ready to just be out of the house and away from her burdens.

Tonight there is a girls night party and neighbor Noey's house. The ladies will be drinking cosmos and margaritas. I imagine the party will migrate to the Coloma Club. Aunt Judy and Uncle Peter are coming in to town today and will hang out with me and the kids tonight.

Friday night trips to the Coloma Club have become ritual with the chickenhawk. She does not drink all week. She hasn't picked up any bad coping habits in dealing with this family crisis so far. She says that she is eating too many cookies but I cant tell. Every week there are some girlfriends that have joined her; Tormaline, Tracy, Jen, Heather and others. It is time for them to drink a little and do some dancing.

The Coloma Club is a pretty classic place. It is a combination bar and cafe. When you walk in the door you turn left to go to the saloon or right to get some biscuits and gravy with rot-gut coffee. The bar is a favorite among Harley riders that cruise the open rolling highways of the foothills but they are typically there only during the day. By night the bar is a collision of the cultures of the Coloma Lotus valley.

There are some distinct populations types in the Coloma Lotus valley and some of those populations run together at the Coloma Club. There are the long-term multi-generational residents of El Dorado County that can remember when living in Coloma, on the river meant that you lived in a bad neighborhood. Then there are the people (like myself) that those folks would probably call "rafters." Rafters is an appropriate name I suppose. Rafting is what brought many of us to the Coloma Lotus Valley. That trend started somewhere in the 1970's and has lasted through to today. Rafters are people that see the valley and even El Dorado County as an excellent place to make a home. We are close to a major metropolitan center. There is tons of open space. The river and the mountains provide excellent recreational opportunities. Living on or near the river is a great lifestyle. Those populations don't come together too often except at the Coloma Club on a Friday night.

Update:
I started this post on Friday bust just got to posting it tonight, Sunday Night. I am doing well. I have been having some great days and am feeling a lot better than I have been. I have the second round of IV Chemo on Thursday, we are switching to a new drug so hopefully I will not get as hammered as I did last time. I start my 12th week of the oral chemo tomorrow night! Hopefully I am feeling better because the cancer's ass is getting kicked. I am pretty sure that is what is happening. I also started on a phosphorus supplement that I think is making me fell good as well.

Getting Ready

2008-05-08T19:12:00.001-07:00

The C/H spent about a half hour on the phone with the folks at Stanford Cancer Center. We are trying to find out what the time frame will be for my Bone Marrow Transplant. They gave us a 300 page binder all about the BMT but it doesn't really tell you how long the whole process takes. What I am learning is that everyone is different and the time that it takes depends on a ton of different factors.

It sounds like that for the first phase or two I will be able to come back home after a day or so in the hospital at Stanford. Those phases will last for up to a month or so. After that I will have to be at or near Stanford for what sounds like a couple of months! I have to say I am not looking forward to being away for so long. I am going to miss a lot being away from the house and not seeing the kids but I've got to do what I've got to do.

The literature says that it will take 3-6 months to completely recover from the BMT so that sounds like if everything goes really well, I will be starting to feel good sometime around next March. Yikes. That is a really long time.

The good news is that I have the opportunity to do this. I get to have a chance at getting my body back and to feel good again. For that I am very very grateful.

That is all the news for now. I am having mostly good days lately, still have all the regular challenges but hanging in there.
Thanks for reading

Pictures

2008-05-06T17:43:00.000-07:00

If you want the latest news about my progress scroll to the next post. Following are some pictures of the activity around here in the last week. They came from Nana's camera. We are not as diligent photographers as her so this is something extra for your viewing pleasure.

Chickenhawk reading up

The The Coolest 24 hour racers "puddin' riders" Left to Right Ian, Matt, Myself, Jerry, Patrick. Thanks guys I am really looking forward to next year.

Papa and Chickenhawk holding up the banner presented to me by the Puddin' Riders. I put this one in to show how hard she is working. Note the (not so) small child on her hip while carting me around to celebrity appearances.

Jerry and Kelly working on an irrigation system for the recovery garden. Doing their best to stay on task despite distractions.

Nana doing what Nana's do best, taking care of the little ones while we run to a million doctors appointments.

Papa doing one of the many household chores that I cant do. Thanks Papa Nana and Papa

Last I want to give a big shout out to Dawn Bean who just came buy with a large check. I think it was her winnings from the 24 hour race that she just aced. Thank You Dawn. Here is an article about Dawn and her amazing first place in her first 24 hour race. Well Done!

A Step Forward

2008-05-06T10:24:00.000-07:00

Wow! What a weekend. Nana and Papa (my in-laws) came to town to watch the kids on Wednesday to help out with all of this. Also on Wednesday we went to the Kaiser Lab to get my two month diagnostic blood draw. That will tell whether or not I am responding to the front line chemotherapy. By the way, everything I have heard says that it is a 50/50 chance as to whether I will respond. I was feeling pretty convinced that I was in the wrong 50%. That test takes 5 days to a week to come out so we just had to wait.

On Friday the C/H and I had an appointment with the Stanford Cancer Center where I will have my Bone Marrow transplant. It is a good three hour drive to the campus that neither one of us was looking forward to. We booked a room at the local Best Western so that we wouldn't have to battle traffic on the way home. That would have been too much for me. So we left at 8:30 and started the drive to the bay. Now, on a normal day, I have to nap by 1:00 at the latest and if I don't I am a mess. So we got to Stanford with an hour to spare. We set out right away to find some lunch. We both figured it would be easy to find somewhere to find decent food close to the campus. That was a bad assumption. It took us an hour to find food and get back to the campus, then we had to find the place where our meeting was. It was a big scramble. We ended up 15 minutes late. All I could say was, "oh well." Both of us hate to be late but there was just no sense in getting upset about it.

The meeting with the doctor took an hour. I have found that the sicker you are, the longer the doctors talk with you. We went over all the different options facing us and what the time-lines look like but nothing was close to conclusive. That is because we are still waiting to find out if the front-line therapy is working. I struggled through the meeting to keep my wits about me, I was exhausted. At the end of the meeting all I could think of was going to our room and falling into bed for a couple of hours. The doc had other ideas tho' He wanted me to go get some lab work done. So off to the lab we went.

When I sat down the lab worker pulled out, count 'em, 15 tubes for me to fill. That is about 10 more than I usually do. I am also at the point where I have so many needles stuck in my arm that I have pretty bad scar tissue and bruising on my veins. It used to be that I was pretty easy to pull blood from, but not this time. After filling about 8 tubes from my right arm the blood just stopped flowing into the tubes. So they switched arms. After about three tries on the new arm they gave up and went back to the other side. They found a different vein and started again. After about three tubes I dried up again. That is the point where I just shut my eyes and started talking to myself, sort of the same way I do when I am trying to get up a big climb or finish a long ride.
Just finish this. Just get though this. Stay strong. Keep it together.

I became oblivious to what the vampire ladies were doing. I just sat in the chair and focused on keeping it together. I tried to ignore the frustrated sighs and fidgeting coming from the chickenhawk I just sat there and waited to be done. After a half hour of trying, I was done. They gave me a tiny can of hot orange juice. It was disgusting but I needed the sugar. The Chickenhawk asked for a wheelchair to get me out of there but I said I was ready to go. We hightailed it to the hotel and I proceeded to pass out for a couple hours.

We drove home on Saturday morning and I napped all afternoon at home. I slept through dinner and woke up about 9PM. When I woke up I started puking. Luckily I had a basin handy so the mess was contained. While I was cleaning up from that barf the chickenhawk said she had some good news. My first thought was that there is only one thing that you could possibly tell me that is good news. Sure enough, she said that Doctor KT had called. She had been checking my lab results in the Kaiser system every 15 minutes when she was at work. The key results were in. The key numbers that we are looking for had decreased by 25%! I have 25% less cancer in my body than I did a month ago. I am getting better. I am in the right 50%! I have never. Ever in my life. Had better news. Not even close. I cried tears of relief and joy. Suddenly I felt like I had more hope than I have had for months. There will be another phase to this process. I will get my body back!

I felt better after the barf so I had some toast and Gatorade. That didn't work to well and I barfed all over again. I finally got to sleep on the couch around 11:30 then at 1:30 the C/H came and brought me to bed.

I slept in late on Sunday AM. When I woke up we had just enough time to make it out to the 24 hour Mountain Bike race in cool. Jerry, Patrick, Matt B and Ian raced in my honor. They took 2nd! They may be puddin's but they are fast. They presented me with a banner that Jerry had made. I'll try to get a picture of it up on the blog. I got interviewed by the local Fox affiliate. I have no idea whether it got aired. After the race the guys actually gave me the cash prize that they had won!

That money will be the seed money for the Spencer Rubin Foundation the organization that I will be starting in my name to help ensure the future of my family. The banner will hang in a place of honor in my garage.

Now I have heard of good karma before but here is a great example. I wrote a couple of posts ago about Patrick and all the hard work he did on my recovery garden. Well, at the raffle he won the grand prize a custom Grognard 29 single speed. I couldn't think of a more deserving individual.

We met with the oncologist yesterday (Monday) and he seemed pleased with the progress. Sounds like we are getting ready to move into the next phase. We are going to look at doing radiation on my hip/leg to ease some of the pain that I am having there. That may or may not work out... we'll see. Either way the good news is in. I am responding to the treatment. I am getting better. I cant tell you how good that feels.

Sorry for the long drought of posts but as you can see I have been really busy. I am looking forward to a quiet week this week.

Today Was a Good Day

2008-04-29T10:18:00.000-07:00

Just wakin up in the mornin' gotta thank god.

I dont know but today seemed kinda odd.

No barkin' from the dog, no smog

and momma cookin' breakfast with no hog.

Neighbor Noey usually takes the kids to school in the morning. For some reason yesterday the chickenhawk took the kids instead. I usually wait for her to come get me up and help me get dressed. Not yesterday. I got up on my own and dressed all by myself. (big deal.)

I was ready for breakfast by the time she got back. Had a nice plate of potatoes and eggs and decided that today was the day. I made my first voluntary trip out of the house since being diagnosed. It has been a quite week; no trips to the doctors offices. or reasons to go out so I made one up. The c/h was good enough to cart my ass out to the supermarket. I hobbled in to the front door and found the loaner lark. You know the little battery operated go-kart that the old folks use to get around the store. It was great. I haven't been able to drive since February so it felt really good to go faster than a walk while also doing the driving.

We bought about $100 worth of beverages. Since I started treatment everything tastes weird or bad, especially water, so I am in a constant search for something to drink that tastes good. So I bought all kinds of juices and teas and stuff. It was great making my own decisions instead of asking someone to go to the store for me and buy something that I am trying to describe. It was great. We picked up our youngest one from pre-school on the way home.

When we got home I was toast. I layed down in the bedroom for a couple of hours but never really slept. I got up around 3 feeling refreshed and hung out with the kids for a while. We watched an episode of the Deadliest Catch a DVD that we borrowed from Scooter. I took another break before dinner and came out feeling ready to get my grub on.

Monday is my night to take dexamethasone. It is an awful drug that usually rips my stomach to shreds. I tried a new strategy last night. We were eating burritos and I buried the drug deep in a big meal of refried beans, rice gauc and cheese. It really seemed to work I never felt very sick from the drug. What a releif.

I've been reading a cycling murder mystery called Two Wheels by Greg Moody. It was in a big box of books that Ray lent me. It is great escapist fun for me to read about some fictional American bike racer in Europe. So that kept me entertained while the C/H rustled the kids through the evening routine. Afterwards we watched about an hour of The God Father, we have the box set of the series that was loaned to us by Bill.
So that is a picture of a day in the life. The big difference is that I felt really good all day. I'll take it.

What I'm Not Doing

2008-04-27T17:22:00.001-07:00

Here we are the third weekend in April. For the last five years or so I have done the Chico Wildflower Century on this weekend. It is my favorite century for many reasons. Most of all is the terrain. It is classic valley/ foothills transition. The course goes up from Chico to the little town of Paradise and then drops down by Lake Oroville and climbs back up on to table mountain. Neither of the climbs are very big. They are actually a typical length of climb for what I am used to riding around Coloma 1,00 0 to 1,500 feet or so. The rest of the ride is great rolling terrain except for the finish which is about 25 miles of pan flat valley riding. I love that part, mostly because I never get to ride roads like that but there is more.

Over the last few years of doing the ride I have discovered that the funnest way to do the ride is with a crew of strong riders. At the end of the ride, when you hit the flats and start working on a pace line the speeds stay in the mid twenties pretty easily. That is how I've done it for the last couple of years and it is a treat. Usually the guys I am riding with pick up a giant line of "passengers" a group of riders that are tucked into our slip stream that wont go to the front of the group and take a pull. That is fine. For some reason on that course as the flat miles tick by, I get stronger. I really enjoy those flats. As we start rolling into Chico I get frisky and start speeding up and generally start monkeying around.

The weather is a mix. This weekend it is hot and dry. In the past I have been rained on a couple of times. But I have always finished the ride in sunshine. It is also usually the peak of wildflower season in the foothills here in CA. This year it is quite late though. The food on the ride is really good. They make a salad that is really good... Maybe it just taste really good because I am starving when I finish.

So, that is what I am not doing this weekend. Instead, I am on the couch. Not much to report. The DVD player is on the fritz. I think I wore it out watching movies. I have a giant stack of loaners from friends. I amm Feeling pretty good. I watched Liege Bastonge Liege on VS. Good gawd there were a lot of commercials! I really wanted to see one of the Schelck brothers win but Andy got dropped after that big effort. I've been enjoying a bunch of CDs that Stu made for me a while back. Thanks dude.

Feels like we are in a limbo a bit. Waiting to see if the treatment is working, waiting to find out when I go for a BMT. Waiting for the next IV Chemo session to kick my butt.

I sure am looking forward to being done with this.

Garden and updates

2008-04-25T11:34:00.000-07:00

Hurrah!! The Garden is in. We started building it a month ago at the Minga work party. There was not enough time or materials then to finish the project but not to worry. A couple of people, specifically Patrick and Jim would not quit. Both guys came back on multiple occasions to finish the fence, deliver soil and hang the gate. Annette, Pats wife, also made a fantastic snake sculpture that guards the gate. It is so great to be the recipient of such hard work and dedication.

A couple of years ago Jim said something to me that has stuck in my mind; "One way to find out who your real friends are is to call them at four in the morning. " Nothing about having cancer is convenient, on the contrary it is a giant inconvenience. But folks like Patrick and Jim don't seem to mind. They jump up and help. So many people have jumped up and helped it is amazing.

I was speaking with Aunt Judy yesterday. She had read a study that was done on people recovering from serious illness. The study found that the single largest factor contributing to recovery is a solid family and community support group. I know gratitude is one of my big themes here in this blog but I want to look at it from another direction for a minute.

Think of all of the young men that are returning home from service in the middle east right now. Many of them with life changing injuries. Many of these guys went into the military because their resources were limited in the first place. The burden that these poor guys put on their families is huge. I have also seen in the news that the support that our government is supplying for these guys is lacking. It is a real shame that those guys should want for anything. I don't mean to get all political here. I am trying to show how lucky I feel. Lucky to live in such a great community, lucky that I have in my my life I have reached out to so many folks and made such great friends. So many four-in- the-morning-friends. So thanks Jim Patrick and Annette and so many others that are helping us out.

Other News:

We have been working on getting our ducks in a row for the Bone Marrow Transplant (BMT). Really it is mostly the chickenhawk doing that. We don't know when the BMT will be. It is dependent on when and how well my current oral chemotherapy is working. Once that oral chemo's results start to plateau, then I will go shift over to the BMT. We are hoping that is going to be solidly in the middle of the summer so that it has a minimal impact on the kids and school. But, as I said earlier, there is nothing convenient about cancer.

Yesterday, when I was getting out of bed I could tell that the C/H was really upset about something. I started probing right away. She quickly shared that she had read in our health insurance contract that our policy on pays for 100 days worth of outpatient medication! That is a big deal. The actual cost of the meds that I am taking is in the many thousands of dollars per month range. If we have to cover the cost of the meds on our own after 100 days we are screwed! We both got morose and resigned at the same time. I was thinking about which bikes I would sell first and which retirement account I would drain.

Then the C/H spent an hour working through voice mail hell and called the member services people to get clarification... "Oh no," the voice on the other end said, "you've got it all wrong. You only get 100 days worth of meds at a time once you run out of those, you can re-up for another 100 days." We got all worked up for no reason. That is the nature of the beast. We are on the edge so much of the time. It doesn't take much to push us over the top.

So my question to you; when have you gone over the top about something that ended up being no big deal?

Breaking it Down

2008-04-21T12:36:00.000-07:00

In all of the difficult athletic challenges I have taken, when things get hard my strategy has been to break the big task into smaller steps. On hard whitewater, I try to maintain my focus by just thinking about each move as it comes and not worrying about the entire run. At the end of the day I feel like I just did a bunch of challenging moves rather than a whole day of difficult whitewater.

On the bike when I am cooked and just need to finish, I'll get to the point where I am just riding from one telephone pole to the next one- breaking the ride down into series of 100 yard sections. That makes it easier than thinking about how many more miles I have to go before I get to eat pizza and drink a beer.

With this cancer treatment I am doing the same thing. I mark my progress with my Thalidomide package. I take one pill a day, they come in packs of one month worth of pills. The pills are in a bubble pack, you push them out of the plastic bubble through the paper, you know the type... Those pills are arranged into four rows of seven each representing a weeks worth of treatment. Each day I kill one more pill and I feel like I got something done. Last night, I pushed out the last pill in my 8th week of treatment. Two packs down. Two months of taking care of business! That feels like a really big deal to me.

When I started, the doc told me I would be in this phase of the treatment for three to four months so, hopefully, I am halfway done with this phase. I have no illusions here, there is a possibility that this treatment might not be working at all and I'll have to go back to the drawing board. Whatever happens, I have got two months of training under my belt, I know more now about cancering than I did two months ago. I hope the whole thing is over sooner rather than later but at least I am getting better at doing this.

I want to share something else...

This guy named Randy Pausch, a professor at Carnegie Mellon University was diagnosed with Pancreatic Cancer and given 3 to 6 months of good health. He prepared a "last lecture" titled "Really Achieve Your Childhood Dreams." He then went on to record another lecture about time management. Both lectures are a little longer than an hour long and both are fantastic. They are very worth the time it takes to listen. I downloaded the Audio and listened to them on my ipod. I also burned a disc of both of them from ITunes so that works as well.

His Website is here. From there you can choose to watch the video lecture or download the audio lecture or get the transcripts, take your pick. I promise you will enjoy them. The time management is especially good for professionals who have trouble balancing the demands of work, family and life. Enjoy. Thanks to David and Granny for telling me about him.

If you are just checking in here, I have done two posts in two days! keep scrolling down to read the post I did yesterday.
Cheers

IV Chemo Round I

2008-04-20T19:17:00.000-07:00

Well just when you think everything is going along really well, BAM there is something to put you back into reality. The chickenhawk and I had a busy week scheduled. We had to go down the hill to doctors visits on Monday, Wednesday and Thursday. A couple of the trips were early so I would have to get out of bed earlier than normal... We were pretty psyched up for it. Chickenhawk's younger sister came down from Oregon without her kids or husband to spend the week giving us a hand. It was a huge contribution because she could take care of the kids really easily while we spent the week at doctors appointments.

Thursday was my last set of appointments. I had to go to a class on chemotherapy that they make everyone go to before they can get IV chemotherapy. Thus far my chemo therapy has all been oral and as a result not as gnarly as intravenous chemo. The oncologist decided that I was ready to receive some IV chemo. Now this IV chemo is not really for killing cancer cells, it is for strengthening my bones. The drug that they gave me is called zometa and it only takes 1/2 hour to get it onto me. So right after the class they took me downstairs and hooked me up to the IV pole.

In the class they gave us all handouts about our specific chemo drugs. These handouts tell you all of the "potential" side effects. Mine was constipation (always constipation) muscle, joint and bone soreness, fever, chills, muscle spasms, fatigue, nausea and a few other things. The nurses at the chemo clinic were really nice, they tool really good care of us and I barely had time to crack a magazine before we were out of there. On the way home, it felt like the last day of school before summer vacation. We were done with the hard week and had the whole weekend to chill out. I was singing along with the car radio and feeling great. Got home around 3 and took a nap.

When I woke up, the world had changed. I was starting to feel not so great. On Friday morning I was toast. I cant really remember what happened on Friday other than I felt really really bad. It felt how I would feel if I rode three days of the tour de france in the alps. I was hammered. My temperature started to creep up and basically all of the aforementioned side effects happened in a big way especially fatigue. I slept like crazy. I had trouble moving due to all of the pain and had to break into the emergency morphine stash a couple of times. It was pretty much a new low point in the cancering process. The crazy thing is my chemo is one of the more mild chemos. Holy sh%$! I cant imagine getting through the rougher ones.

I felt a little bit better on Saturday and I watched 3 movies... Unbreakable, Life is Beautiful, and 3:10 to Yuma. I did not talk on the phone. I didn't have the energy. I could barely eat, going to the bathroom was a challenge. I am writing this on Sunday and I starting to feel back to my "normal" self. I watched Paris Roubaix today with KD and that was the highlight of the weekend. Boonen is frickin amazing. He ran that race perfectly.

I'll post more soon, gotta go to save energy.

Friends and Family

2008-04-13T20:57:00.000-07:00

One of the great things about having cancer is manifest in the blog. I have not completely put my finger on it yet so I will try to here. I have had a long, fun life. The importance of having fun was clear to me from an early age. One of the things that has made my life so fun is all of the people that have been in my life; I have so many great memories of good times, adventures and parties and those memories stay there because of the people that I shared those good times with.

Since I was diagnosed people have come out of the woodwork to reach out, say a kind word, let me know they are there and thinking good thoughts or praying to their deity of choice for me. It has been wonderful. I have always been passionate about my friends. Wherever life leads me, I seem to make friends pretty easily and once you are my friend, you are my friend for life. I am passionate about the people that I spend time with because they are what makes life so great.

One of my favorite occasions is when I am able to get two groups of friends together. When I was a kid loved it when I was allowed to bring a friend on a family trip. Then I was sharing my family with my friend and we were all getting to know one another. I was bussed to school from 3rd through 8th grade so I had friends in school and then friends in my neighborhood and friends from the yacht racing. I loved it when I was able to get those groups together. As an adult I have loved the occasions where I can get my friends from work to play with my friends from home life. When I am surrounded by my friends I feel safe and warm, like nothing on earth could possibly hurt me.

I have shared so many amazing adventures with friends that I could write this blog only about all of the different fun times I have had and the friends I was with. I could write a post a day and never run out of material.

As the years pass we all get busy with our lives and go in many different directions. I am so amazed and pleased with the many different and wonderful things all of my friends have done. If you are reading this and we have spent time together, then I am talking about you. I am proud to call you a friend. Nothing makes me happier than when you are happy, when you are experiencing success, or growth or just a good stoke.

There is something that I have been trying to nail down since the work party two weeks ago. I wrote about it before, about the movie Saving Private Ryan, where the Tom Hanks character tells private Ryan to earn the life that all these men have died to save for you… I have felt like I had to earn all of the kindness and self sacrifice that has been sent my way since my diagnosis. Adam has set me straight by telling me that all of the goodness, all of the gifts that I have been given are something that I earned by being myself up until this point and I am really beginning to see that is the case.

I see now that all the years of working and playing with all these great people have been a huge deposit in the karma bank. I certainly never thought of it that way until now but I can tell you that it has been really really rewarding to have so many great friends, both old and new reach out to me lately. It makes me realize just how blessed I am.

Then there is a whole other dimension to this. As I have become more and more feeble, and my family has become more and more stressed by the challenge of cancering many of those friends have stepped up in a big way to help out. This is really more than my little family is able to do on its own. So now we have meals brought to us several times a week, we have had a work party where 50 people came and worked on our house and our yard. The whole community has helped out with watching our kids. We now have a much bigger family. When someone shows up with tonight’s dinner or when there is a gang of people working on our garden or the kids come home from a great day of skiing that the C/H and I had nothing to do with, I feel as though my family is bigger. I feel like I have gained a whole bunch of brothers and sisters. So that is one of the real gifts of cancer.

Paris Roubaix

2008-04-11T13:28:00.001-07:00

CORRECTION: Show time for Paris Roubaix is next Sunday APRIL 20th at 1PM. Apparently there is some sort of Tennis event that versus deems to be more important. So we will have to wait a whole week to see the race. The real question is will you be able to keep from finding out who the winner is so that you can watch the race on TV and be surprised? Not me. On the bright side that gives them a whole week to work on the production quality which has gone downhill in the last couple of years.

Sunday is Paris Roubaix which sound like no big deal to a non cycling sports fan but for a cycling fan this is the equivalent of the Super Bowl or a Heavy Weight World Championship bout. It is arguably the hardest one day endurance event race that is done.

I could try to write about it but there is no way I can do it justice. You can go here to read about this year's race. In a nutshell it is a 259 km (168mi) race over roads that date back to the roman empire. In fact 50+ km of this years race will be over stone cobbles. All this on skinny tired road bikes. It is an all out battle of strength and determination and only the guys that can go really fast under very adverse conditions while also making good tactical decisions stand a chance of doing well. This year should be extra exciting because the forecast for the area is cold and rain with possibly even some snow!

Showtime is 4pm Eastern time on Versus if you get it. If you don't find a friend who does and bring over a six pack of Belgian beer and some sausages. This will be the race to watch this year.

Hamster Training

2008-04-08T14:32:00.000-07:00

We were chatting last night about running on treadmills. The C/H was relating the story of her recent first experience with a treadmill at the local gym. It sounded pretty much like something out a Chevy Chase Saturday Night Live opening scene. But it also got me thinking about the difference between runners and riders. Now I used to say that the only thing that would make me run is if something was chasing me. However in the pre-diagnosis months where my body was deteriorating one of my goals became to run with out pain. It is still one of my goals. But for all intents and purposes I am not a runner. I am a rider. Running bores me, it hurts, you don't go very far, and it is hard on your body.

I do have lots of friends who are runners some of them very accomplished runners and I have the utmost respect for runners. I am married to one. I do appreciate the simplicity of running. It is the way that the original humans got around when they were in a hurry. You don't really need any special gear and it is ultimately pure as a form of recreation. It just doesn't float my boat.
However it seems to me that runners are more likely to be willing to or even enjoy running indoors on a treadmill while listening to their Ipod. The cycling equivalent of this is riding rollers or a trainer which is a different story all together. Most of the complaints that I have about running, indoors or out, are the same complaints about riding indoors. It is boring, you don't go anywhere and it hurts much more so than a regular ride because you sit in the same position for the whole "ride." Now I have spent more than my fair share of rime on the trainer. After all I am an avid enthusiast who cant stand to get out of shape in the winter months so usually around Mid December I start building base miles on the trainer and work up to my first round of intensity traning by early February all on the trainer if weather doesn't permit. But I will bend over backward to ride outdoors even in the winter. I don't mind riding in the cold or the wind. I like riding in the rain but I cant do it everyday. I am usually limited by daylight hours in the winter. But come this time of year, the trainer is put away and I gets my mile on the road.

But then there are those runners, who continue year round, to run on their hamster wheels at home and in the gym as if being outside is a problem. Seeing the wildflowers bloom is a drawback and staring at a wall and having nine inch nails blaring in your ears is the shizzle. I don't get it. What is up with that? Do you not want to be outside because you might sweat. Or because someone might see you? Or you are too tempted by running past the Starbucks? Perhaps because running is so damn boring to begin with, it doesn't really matter if you are staring at a wall or running around your neighborhood.

OK I've lit the fuse let the debate explode. Comment below.

But First: check out this link about How to talk to people who have cancer . Most of what it says is right on the money. I've got to say that insisting that everything is going to be OK is really annoying. It is already way not OK but it is what it is. And unsolicited advice can be really frustrating as well, I cant physically do all of the things that I have been advised to do, there are not enough hours in the day. I love you all and I know that you are well meaning and I would rather have all that than no communication. I know it has got to be really hard to reach out to someone like me because it brings you up against your own fears and discomforts but I appreciate any and all communication. I read all of my email even if I don't reply and if you make a gaff, I wont hold it against you. I love you for trying, that is really what counts.

Now chime in: trainers vs. treadmills, indoor vs. outdoor.
Thanks for reading

Getting Past the Sadness

2008-04-05T17:01:00.000-07:00

I alluded to the fact that I have not been as prolific a writer lately in my last post. It hasn't been there for me. I realize now that is because I am chewing on some new emotional aspects of my situation. Be careful don't read any farther if you are not ready for some negativity. I think part of it comes from passing the one month mark. Part of it comes from the intense feelings that the Minga brought up for me. Overall I think it is just a new phase in the journey that I am on. It has been a phase of intense, overwhelming sadness. I'll try to relate what it is like here.

I am 41. I have been married to my wife for 18 years and with her for 20. I have two beautiful girls who are 5 and almost 7. I have lived my life as much as I could as though each day were precious and something to be treasured. I have travelled all over running rivers and having adventures. I have sailed far away seas and climbed tall mountains. I have been to places that few other people have been to. I have embodied a commitment to live my life in a way that makes me happy. But I have also lived my life as though I was going to live to be an old man.

Cancer has put an end to that assumption. While none of us really know when we are going to go out, I have had to spend some time contemplating a drastically shortened life. I don't really want to get into the medical aspects of what the survivability of multiple myeloma are, that is not the point. This is about the emotional side of cancer. I've been sitting with the feeling of not having much time left. I am not one to ignore feelings. I know that I have to confront what is going on for me in order to move past it and that has been really hard.

Lets start with the worst case scenario. What if the treatment regimen doesn't work? While this is unlikely it is my biggest fear. So what will happen to me is that I will never get my beautiful athletic body back. Pain will continue to dominate my life my condition will continue to deteriorate until I am sick all the time and then I die. While I fear this, I think it is really unlikely. I don't think it is going to go that way. I don't spend a lot of psychic energy on this fear, but it is there.

Next scenario is different. In this one the treatment works. In a year or so after chemo, a bone marrow transplant, surgery on my hip, I am back on the bike, playing with my kids and post symptom free. The median time for post treatment MM survivors being symptom free according to some statistics is about 3-5 years. So after that sort of time frame I start having symptoms again. I go back into treatment and live in the hell of treatment for some unknown period of time until I die. This is the scenario that haunts me. It is only human nature to want answers to this but the nature of the disease that I have doesn't lend itself to being predictable. And I am a unusual multiple myeloma patient. I have heard stories of MM patients that have gone through the treatment 10 years ago and are still going strong. The part of this that is hard for me is not knowing how long I've got and assuming the worst.

I have been, in my mind, picturing only a year or so of life left and trying to come to terms with that. It has been really hard. The hardest part for me is thinking about not being able to spend much more time with my girls. They are so busy and active right now and I am so feeble that I struggle to connect with them as it is. The thought of not being with them as they grow into young women is really more than I can bear at times. Not being with them for all of those landmarks of growing is so sad for me. I am sad to think that I might not be there to celebrate all of the successes just kills me. To imagine not being there to hold them when they are sad drives me insane with sadness. I am not worried about me. I am worried about what will become of them.

I have spent too much time lately thinking about that. What I have come to realize (all over again) is that I have no control over what is going to happen. Just that act of thinking about all of that is self defeating. I am killing the opportunity to have a good day right now by spending time thinking about what might happen in the future. I thought that I knew better than to go down that road but I found myself yesterday paralyzed with overwhelming sadness. I am definitely snapping out of it now. I realize that the days that I spent stuck in despair are days that I am not going to get back. Yes, it is part of my process to feel all of the feelings. I still will. But I am going to have to be more careful about going down the depression road. It just isn't worth it.

The fact of the matter is that we are all living on a short deadline. At some point we are all going to keel over. That fact is certainly up in my face right now. I am most likely not going to be old and gray with the chickenhawk but I do have today. And I am pretty sure I have tomorrow. And I'll be dammed if I am going to waste any more time. I am going to try really hard to enjoy every moment for the gift that it is.

Quick Update

2008-04-04T14:33:00.000-07:00

I know I haven't been writing as much as usual. I am not sure why. Maybe I am just not feeling as inspired. We went to the Oncologist yesterday for my monthly checkup. It was not very hopeful. The thing that he is tracking is my plasma cells. Thus far there has not been a very big improvement. That is disappointing news but there are things to consider in there. Plasma cells are the slowest to grow and will be the slowest to react to the treatment. Also, it is really too early to expect a major change or to say that there is a trend.

Going to the oncologist is a stressful event. You never know what the news is going to be and it usually hits like a ton of bricks. We had a busy day scheduled with a trip down to the hospital and then rush back home to pick up the kids. No time to process the harsh news. As a result last night was pretty stressful around the house. Kids screaming, parents yelling and lots of crying. Lesson learned. Next time we go to the oncologist we will schedule the rest of the day away from the kids so we can assimilate then news.

Thank goodness Bill decided to drop by and check on us. He helped put the kids to bed and stayed late chatting and cheering us up.

So in a month we'll go for another checkup. And we'll see where I stand from there.
I am working on another post that I'll try to get out soon.
Take care everyone.

Minga

2008-04-01T12:42:00.000-07:00

Hey There,
The chickenhawk and I just got my Internet connection back on line! It is so good to be back. I had thought about doing a post today (April 1) where I tell everyone that I have been faking all along, that I don't have cancer and I was just taking a couple of months off of work and getting all my friends and neighbors to do all my cooking and house work and my coworkers to do all my work for me. But honestly that just feels too frivolous right now.

The reason that the computer was off line is that on Saturday we had a Minga which is an ancient concept from pre-Inca Times, not different than a barn raising where the community comes together to do a major work project. About 50 people came from as far away as Marin County and Bend OR to help with the work. In four hours more than a year's worth of work got done. A swing set got moved to a newly flattened and terraced spot on our property. An 8'x16" shed got moved via trailer across the property. That allowed for the creation of a garden fence and eventually some raised beds. The volunteers also made two mini patios out of broken up concrete. They deep cleaned the interior of the house including the fridge, windows, toys, all dust bunnies the eaves of the house the gutters.

To say the least the amount of work that got done was amazing! It really is one of those things that you would have to see to believe, but picture 50 people all working in small groups in a focused way on multiple small projects that were in many ways interconnected with the a bigger project. Each of these groups had a leader and then there were a couple of overall project leaders that coordinated with an overall plan. It seemed to me as an observer that each person had a job that they understood and that they were engaged with what they were doing. Everyone seemed to be having fun, joking and laughing, focusing on their work and enjoying the afternoon.

I watched for a while but pretty quickly I became overwhelmed and went and took a nap. When I awoke at 5PM the work was winding down and the party was beginning. Scooter had coordinated the potluck. One thing about a Coloma pot luck is that the food is almost always excellent. This was no exception, chicken, brats, burgers on the BBQ, salads of all types, pasta dishes and of course deserts. And, of course, beer.

The previous day (Friday) was my youngest daughters birthday. Matt and April had made her two amazing "treasure chest" birthday cakes. The kids had spent the day at our next door neighbors house playing in their yard and being watched by a gang of adults and older kids. In the afternoon Tiffany came over with her horse and all of the kids got to go for horse rides! Many folks brought gifts for our daughter and by 7PM she was falling asleep while eating her birthday cake. I think she was just as overwhelmed as I was.

My brother Billy was visiting from Arizona. It was really great to see his reaction to what was happening. It is hard to describe the sense of community that we here in LoCo valley feel for one another but the Minga on Saturday was a great example of it. He was pretty amazed by how many people were here and truly working hard to get a job done. No BS just focusing on getting a job done.

For my part it is hard to describe how I feel. Mostly I feel overwhelmed. With Gratitude. But there is something else. Did you ever see the movie Saving Private Ryan. I think when most people think of that movie they remember the unbridled violence and honest depiction of war. But, do you remember the message of the movie? At the end of the story after many people have been killed in an attempt to save this one guy's life, the squad leader turns to private Ryan and as he is dying tells private Ryan to "earn it, you go forward into your life and you earn it." I don't know how I will earn it. I feel deeply indebted to so many people for helping me and my family out. I feel more than that though.

I feel as if my family has grown. It used to feel like, there way me and the C/H and the kids then the extended family of parents and uncles and cousins and so on. It is different now. Everyone that has stepped up and helped out feels like they have a place in our family and that I would do anything in my power to help any one of them out in any way that I could. Another one of the blessing of cancer.

I want to say thanks here. I know that I am not going to remember everyone and I apologize but here goes.
Billy, Adam, David, Tommy, Terry, Bill, KT, Patrick, Matt B, April, Stuart, Eric and Moira, Bill and Robin, Matt S. and Mary, Barbara, Bikes Gone Wild (yes he was here), Jim and Weston (thanks for being my oldest best friend I love you Jim) , John Luana Elise and Alexis, Patty, Scooter, KD and Judy, Cindy, Tiff, Bobby, Marek, Seth and Noel, Phil, Jen and Randy,
I know I am forgetting you and I apologize, I will add more names as they come to me. It is time for my nap. More soon!

The Other Cyclist with Cancer

2008-03-26T12:53:00.000-07:00

The other day pedaldork, one of my favorite commenter's wrote,

"Spence, At one time I admired Lance Armstrong for the way he took on cancer.
I must say though, you have now taken his place. I never thought someone I have
never met could make such a difference in the lives of others. You're definitely
making a difference in mine. I'm looking forward to riding with you in the near
future. Keep fightin' and writin'. God Bless"

I have to say that was a huge compliment that went straight to my head. It is also not the first time that I have been compared to Lance Armstrong. I've got to say that I have terribly mixed feelings about Lance and I thought I would try to hash them out today. A few months ago Elden, AKA Fatty over at Fat Cyclist made what I thought was a great point. He said in a nutshell that he is no fool, which any of us who read his blog know, and that it is pretty clear that Lance either has absurdly super human powers or he was cheating by using EPO Human Growth Hormone and god knows what else when he won 7 Tours de France in a row. There is no solid evidence to support that except for this. Every single competitor that was on the podium with him and most of the competitors in the top 10 have all been either busted for doping or have been implicated in doping scandals. Now Armstrong pretty much rode circles around those other racers who we now know were doped to the gills. That just seems too unlikely that Armstrong was not doping.

Elden went on to say that none of that matters to him as his wife Susan is battling cancer. The amount of help that the Lance Armstrong Foundation has given to his family overrides any ill feelings he may have toward Lance as a racer and representative of the cycling community. I would like to at this point to echo that sentiment. The LAF has been instrumental to my recovery in many ways, in particular by providing the Lotsahelpinhands website tool that allows us to schedule and match all of my families needs with all of our volunteers.

I still feel the need to say more about the subject. First of all there is more damming evidence against Armstrong. A number of his team members from back in the days of US Postal Service have come forth and admitted to doping and talked about a culture of doping on the team. Armstrong has lashed out at any accuser with lawsuits and threats and reprisals. And on a more personal level, Lance left Sheryl Crowe about two weeks before she announced publicly that she had breast cancer.

As a fan of professional road racing I have to acknowledge that the sport has come a long way in the last couple of years and seems to be making great progress at confronting the problem of doping head on. More so than any other professional sport. I am very proud of teams like Slipstream Chipotle and CSC that are trying hard to confront the doping problem head on. But I fear that there is another shoe to drop in the doping wars. That shoe is the eventual discovery that Armstrong was doping all through the seven years that he won the TDF. I fear what will happen to the sport that I love when that happens.

I have never met Lance Armstrong but I have read most of his books as well as a couple of books about him. From what I have read I am a very different person than him. First off I am a puddin'. Even if I had the physical attributes that it would take to win the Tour De France, I certainly don't have the attitude. I enjoy life too much to devote 100% of it towards a single goal. As a parent I could never spend the months away from my children that he did to win those races. It would just be too much for me.

But as a cancer survivor I understand the urge to fight. With everything that I have. I will use any and every drug that the doctors suggest to fight this disease. I will do everything in my power to win against this evil infection and show it that I am tougher than it. In sporting, there is a limit to what someone will do to win when you cross a certain limit, you are cheating. But when it comes to cancer, there is no cheating. There is only winning. I must win. The only other choice is death. So I will do whatever I have to do to win. I will feel done with the cancer battle not when the doctor tells me that I am in remission; but when I have regained my pre-cancer level of fitness. I anticipate that will take a couple of years from now. So at what point am I cheating, if I am still using medical enhancements to reach that goal?

I am a 41 year old man with the judgement and wisdom of someone that has lived that long. I will be very very tempted to use whatever I can to get back to that level of fitness. When Lance battled cancer he was in his 20's and doping was at its peak in pro-cycling. Cycling was also his ticket out of a hardscrabble existence in the forgotten backwoods of Texas. It is widely known that many of the performance enhancing drugs that cyclist use to boost their blood are the very same drugs that cancer patients use for the same end. The temptation must have been very very strong for him.

People are unique, we all experience life in different ways. Having cancer is for anyone a major life experience. Each cancer patient has a different way of reacting to the challenge. My belief is that the world is a safe place and that good will come from this experience. That belief has already gotten me a long way through the experience. I have an incredible support group the likes of which I doubt anyone has ever had. And I have already been given so many gifts. The result is that no matter how I am feeling, I wake each day with an overwhelming sense of gratitude that gets me through each day. I do see getting through cancer as a battle but not in the sense that you might think. I see it as a battle of attitude. It is so very important to me that my attitude stay positive, that I continue to value the things that are important to me, that I continue to see the world as a safe place and that I continue to care about the welfare of my family and community. If cancer takes that away from me then I will lose the battle. I don't want to make a judgement about how anyone else chooses to deal with cancer but I think that attitude is quite different than the way that Lance chose to fight cancer.

When I am back on the bike, I will proudly ride in LAF events and will raise money for the LAF. I will work on my own to support my community in hopes of giving back what I have received. I take comparisons of myself and Lance Armstrong as compliments, after all he is the poster boy for beating cancer. With that said, I see myself as a very different person than Lance. I see my attitude toward life as very different than Lance. I see my battle with cancer as being very different than Lance's. I just want to get through this with as much panache as possible, to share the experience with as many people as possible in hopes that others will learn and grow from it. When I am done, I want to give back as much goodness as I have received through the process.
I don't really know if any of this makes any sense but, there it is.
Thanks for reading

Get Out There

2008-03-25T12:27:00.000-07:00

Yesterday was perfect. One of those spring days that makes the Lotus Coloma valley simply one of the most beautiful places on the face of the earth. Mount Murphy is blanketed with California poppies and there are wildflowers out everywhere you look. The Live Oaks and Black Oaks are budding out new leaves that glow in an almost fluorescent green. The air temperature was about 75; perfect riding temperature and the river was up to about 2500 cfs which is a perfect play level. If you live in the valley you know what I mean. If you don't please disregard everything you've read. All there are here is angry hillbillies and trash heaps. It is a desolate wasteland that is much too far from the shopping malls and Starbucks and there is never "anything happening."

It seems not so long ago that a day like this would be all I would need for an excuse to get out and enjoy. Somewhere along the way things like paying mortgages and health care bills, meeting deadlines and closing deals became more important. Now I see the error in my way. The fact is that we are all living on a finite schedule and at the end I am going to measure our life not in the things that I have acquired or the amount of money I have made but in the experiences I have had and the differences I have made in other peoples lives. I can not make a difference in someone else's life unless I am centered. The way that I get centered is to enjoy perfect moments. Days like yesterday and today are so conducive that perfect moment that there should be NO excuse not to get out and enjoy them.

You may be reading this right now and thinking yeah sounds good but I a have got to do XYZ thing or else blah blah blah. Well you may be right but I would encourage you to ask yourself what will really happen if you take the day or the afternoon or morning off? I mean really what would happen? There is someone willing to watch your kids or do a trade with you. Your clients will either not know or understand that you need to take some time for "personal issues." Your work will not bust you for taking a sick day. I can guarantee that all that crap that you are working on will still be there when you get back and the only difference is that you will be refreshed and ready to go to work instead of surfing over to the puddin' cyclist to see what I am rambling about what you watch the clock tick down til quitting time.

So call your friends, make a plan and get out and enjoy. While you still can. Go race each other up prospector before sunset. Go paddle chili bar and hike up and sit in the poppies and feel the warmth soak into your cold body. Go for a hike with the kids and the dogs at Cronin Ranch. Go up the hill for one last slush session at Sierra at Tahoe. Go take the boat out on the lake for an early season ski session. Go out and whack the ball. Sit under your favorite oak tree, contemplate and meditate. Run the Monroe Ridge trail. Go ahead, I give you permission. Your spouse will understand. The people around you will appreciate it because you will mellow out a bit and god knows you need it.

Do this and I promise you this, you will be happier and better for it, and you will feel better than those who choose not to do it.

Report back here and tell me what you did.

Transcending the Beatdown

2008-03-20T11:56:00.000-07:00

What the Bleep. I posted this a couple of days ago. I know it was up because I got some comments on it but blogger put it back in my "drafts" bucket and took it off the blog. So here it is again. My apologies.
S

Hi there. Feels like I haven’t been able to get as many posts out lately as I want. I told myself yesterday, “self, no posts until you finish your taxes.” Well, I made a good sized dent in them yesterday so I decided today was a good day for a post.

First the update, and then the fund stuff: I discontinued the radiation treatment on Monday. The pain that I experienced over the weekend was almost certainly from inflation caused by the radiation treatment. The spot that they were working on is on my left clavicle. There is a big old tumor there and it was getting inflamed from the radiation. That in turn was pushing on the nerves that run down the clavicle and causing intense pain. The radiation oncologist response was,” just take a bunch of non-steroidal anti inflammatory.” That just shows he doesn’t know me very well… I cannot take N.s.a.i.d’s due to my kidney problems. So it was a pretty easy decision to bag the treatments all together. That means I don’t have to make the 1hour one way commute down to Roseville all week and all next week and I am glad to have the time back. Bummer that it isn’t going to work for me but at least it was just a side treatment designed to just treat the pain in my clavicle in the first place. It was not a primary treatment. I’ll be fine without it.

So my week has been pretty good since then. I am taking long naps in the afternoons. Waking up at 10 AM and going to bed at 10 PM. Mostly I have been feeling good.

Matt Barnes came over today to be Spencer spotter while the c/h, kids, granny and gramps hiked the Monroe ridge trail. It was great hanging out with Matt. We did a lot of talking about the stuff that is important to us and how pursuing your passion is such an important part of being a happy person.

That reminded me that I’ve been wanting to write about that for some time. It seems to me that one of the things that defines us as humans is what we do for our spirits. The fact that almost each and every one of us has something that we do on a regular basis that helps us transcend the weekly beat down of life. For me it was cycling. Throwing my leg over the bike and putting in miles was the thing that I did to keep my head straight amidst all the noise and distraction of the demands of life. It gave me joy and a sense of freedom. It also gave me a sense of limitlessness in that I could go farther and farther on the bike and was only limited by my own body and how long I would hold up. When I was on my bike there was just me, the bike, the road, and my friends. No work, no family problems, no stress. That was my passion.

Almost everyone I know has something that they pursue as their passion. Religious folks go to church on Sunday, surfers look for the perfect wave, skiers spend their lives looking for the ultimate powder day and the list goes on. It seems to me that the healthiest people both of mind and body are the ones that have a passion and devote a good part of their lives to pursuing that passion. It also seems to me that the opposite is true. People that don’t have a developed sense of passion pursuit tend to be the grumpiest most out of shape people around. It seems to me that most substance abusers are lacking a passion. I don’t know if one is the symptom of the other but they do seem to go hand in hand.

Another thing that I have noticed is that like attracts like. I firmly believe that a big part of the reason that I have so many friends old and new coming out of the woodwork to support me through this is because I have spent my whole life in pursuit of my passions. At time is has been climbing, sailing, surfing, kayaking, rafting, etc. Each of those pursuits has put me in the company of other folks that were equally as passionate about those activities. From that common passion long term bonds of friendship have developed and from there, community has grown.
Right now when I am the most hammered, I have the least to be passionate about. I can’t really do anything. It is a pretty big effort on most days to sit at the computer and write a bog post, but its what I’ve got for now. Consequently I feel pretty ripped off. I spend a lot of my time fantasizing about what I am going to do when I get done with this. I feel like I have got pay myself back for months of missing out on the part of life that to me makes it worth living. I am not sure how that is going to take shape but I do know that I am going to have to pay myself back.

So I have a question for you dear readers. What is it that you do to transcend the weekly beatdown. Please leave your answer in the comments. Please note, if you have had trouble leaving comments in the past, I have made it easier. You should not have to sign up for a blogger account you should be able to do it pretty easily and I'd love to hear from you.

Out of the Cave for the Moment

2008-03-16T13:17:00.000-07:00

It has truly been the worst week yet. It started with Nausea that I wrote about. We got that more or less under control with prilosec and so I have been feeling less like barfing all the time. I started radiation treatment on the tumor on my clavicle on Thursday. On Thursday night I noticed an increased level of pain in the clavicle but thought not much of it. On Friday I went for my next radiation treatment and everything went just fine. I woke up on Saturday in an incredible amount of pain. It is hard to describe the pain but it felt like a broken bone x10.

Daughter one and two had both come down with symptoms of strep throat so the chickenhawk took them down the hill to kaiser for diagnosis. While they were out my pain started to really build. Granny was with me and doing her best to take care of me but all I could do was lay there and moan. They came home with antibiotics and the C/H clicked into taking care of me mode. She called doctor KT who made yet another house call. She sat by my bedside and kept giving me more and more liquid morphine until the pain got to a bearable level. Finally I felt good enough to watch Fight Club on the little DVD player. What a great movie. The whole day yesterday is a blur. I just remember being in pain and watching the movie and that is about it. I did do lot of fantasizing about riding my mountain bike and sailing in the Sea of Cortez. I think the pain is related to the radiation treatment so I am going to talk with the doc about discontinuing it.

I hate the end of the day the most. It seems like that is the time of day when I focus the most on my plight. People always give me great feedback about my positive attitude and I do feel like I am mostly positive but when it is time to go to bed I often just feel terrible. My body has been hijacked and I'm only a small bit of the way through the battle to get it back. Sometimes I just cant believe that I have to keep going through this. It is a really long and hard battle and there aren't really any breaks just weird semi-comatose sleep that is hard to wake up from. So last night I broke down and cried again before I went to sleep.

I woke this morning and the sun was out and the pain had subsided. I am completely exhausted to the point where I am having trouble keeping my eyes open to write this post. At least there is a lull in the battle right now. That's all I've got for now. I'll try to write something witty and insightful next time.
Thanks to everyone who is helping in so many ways.

Update

2008-03-12T11:21:00.001-07:00

Since getting out of the big house life has been a bit more difficult than usual. I have been experiencing a lot of nausea. I am not sure what it is coming from. I am on so many drugs that the side effects all collide or cancel each other out or add up to more than they should. It is pretty crazy. At times the nausea has been so bad that all I can do is sit there and try to keep it together. Blogging has been pretty far from my mind.

Yesterday Robin and Barbara went down to the Folsom pharmacy and picked up a prescription of prilosec an anti-nausea drug. Since I've got that on board I am feeling lots better and am able to eat again. the Chickenhawk and I just came home from breakfast at the Coloma Club. For anyone that knows the Coloma Club, they are rolling their eyes right now or possibly pointing their finger down their throat. But I am here to tell you it was great to have food brought to us, what we asked for when we wanted it and to just sit and talk. The Coloma Club is a yucky place but sometimes it just hits the spot.

Spring has sprung in the Coloma Lotus valley. It is my favorite time of year to be here. Coloma is an incredibly beautiful place. We are in the foothills of the Sierra Nevada. The elevation at the floor of the valley is only 750 feet but the mountains that create the canyon rise 2000 feet above the valley. Out the window of my family room is a view of Mount Murphy the biggest most prominent hill in the valley. It burned last summer and has been black ever since. Now it has turned green and the south facing flank of it has got California poppies blanketing it. All of the hills have turned the green of fresh new grass. In a few months that grass will dry out and the hills will be a dusky blond but for now it is shimmering emerald green. The buckeyes are all leafing out in a brilliant green and there are lots of trees blossoming in white flowers all over.

The C/H was running on the Monroe ridge trail yesterday the opposite side of the valley from Mt. Murphy. She said the ridge was blanketed with shooting stars.

The day time temperatures are running in the high 60's or low 70's and it has been sunny to partly cloudy. It is absolutely perfect bike riding weather. If you are not doing anything, I suggest you get in your car, drive here and ride your face off. You will not regret it.

My in laws, Charlie and Nancy stopped by yesterday on their way back home to Bend OR. They had taken a short break after being here for the better part of February. They stayed in a local campground in their palatial RV. They did were really great at stepping in and helping to run our house as the Share the Care group was getting on its feet. They figured out the routine beautifully and wrangled the kids really well. They did most of the grocery shopping and tons of house repairs that we couldn't get to. Their help was so incredibly key I really am grateful for that.

My Mom and her hubby Chuck are here now and are getting into the swing of things. My Mom, we call her Granny was a nurse for her whole working life. She just recently retired. She has been really great at taking care of me while I am down and in need. That takes a load off the C/H who has been working so hard and is constantly struggling with burn out.

Speaking of that, I am really struggling to figure out how I can help the C/H with burn out. She is the hardest worker I know. She will keep going and going until she pops. She is a sprinter not a marathoner. She does not have an easy time asking for help or accepting help or even realizing that she needs it. She just gets angry. At everything. I feel so bad about that. I am usually the one who talks her down, tells her that everything is going to be all right but I am not doing a very good job at that right now. I mean when you look at me and here me telling you everything is going to be all right it has got to be kind of a joke really. There is another example of the insults of cancer, another thing that I have to come to terms with. I cant take care of my spouse the way I used to. It is so fucked.

We are in the second week of Share the Care and it is really working well. At the initial meeting that we had, I mentioned that there were about 100 people that had expressed interest in helping out in various ways. Our coordinator Adrienne has scheduled weekly captains for the next several months. The job of the captains is to schedule the weeks' events; meals, rides to the doctor, kids to and from school etc. As a result there are still about 90 volunteers that have yet to be called on. If you are one of those folks, rest assured, we want your help it is just a matter of getting to calling on people to get them scheduled. We really truly appreciate all the help and offers of help. Please be patient with our process.

I understand that there will be a work party weekend coming up on the 28th or 29th. Stay tuned for more info about that.

So, all in all, I am feeling better than I have for the last few days which I can say were the worst so far. I am catching up with phone calls and stuff that I need to do like taxes and selling my truck. I feel like I have fallen out of touch with a lot of folks that are very important to me but I know you all understand that I am doing what I can while taking care of myself first. I have been dreaming lots about what I am going to do and where I am going to go when I am done with this. I really want to go sailing, somewhere tropical, with the kids. I want to go to Disney land with the girls. I want to form a community assitance group called Loco Care to take care of people in the community that need help. I am dreaming of doing something big on the bike, not sure yet but possibly RAAM with a Velo Loco team possibly 2010.

Rumors of my demise are greatly exaggerated

2008-03-08T19:30:00.000-08:00

Hey There,
It is 7:30 on Saturday night. The C/H just got daughter one to bed. Daughter two is a at a school event. I got back this morning from the Kaiser Hilton. On Thursday evening I was running a low grade fever. We were told by the oncologist to go straight to the ER if I ran a fever so that is what we did. Seth and Noey from next door came over and watched the kids until Mrs. Thomas could get here to spend the night. The C/H drove me down to the ER and they admitted us right away. It was all a haze to me since I took my Thalidomide when we got there and proceeded to fall fast asleep. Ignorance is bliss.

Woke up on Friday feeling just peachy but they didn't want to turn me loose until I pooped. I spent the day taking increasingly more powerful laxatives with the hope of going home to be with the family. Around four in the afternoon it was starting to look doubtful. So David dropped what he was doing to come down and relieve the chickenhawk.

It was funny in a pathetic sort of way. Each time the nurse would bring out the bigger laxative guns they would make a big deal about how I was bound to poop really soon. But I kept exceeding expectations. The last desperate try was a mineral oil enema at about 7 PM. I figured that would blast me out, but by 9:30 still no action. So we bivouaced for the night.

In the AM David scurried over to Starbucks and got me a Venti drip. While he was gone the nurse brought me some prune juice. The combo did the trick and we were on the road by about 9. I spent all day sleeping. I think I'll add prune juice to my morning routine.

I am home, on a new course of antibiotics and feeling a bit tired but no worse for wear and tear. Thanks to David Seth and Barbara for the last minute coverage.

Granny arrives on Monday. I am looking forward to seeing her, Chuck and their new dog Sophie.

Cold Hard Facts: I Do Requests

2008-03-05T12:17:00.000-08:00

In my last post I put it out there. If there is info that you want I want to provide it. My good friend Beth who moved to Napa a couple of years ago with her hubby Marco and beautiful daughter has requested to know what is really up. What the diagnosis and prognosis is. I imagine there are a few readers wondering the same thing. Honestly I am not paying much attention to long-term prognosis. I intend to set new records in that department so I don't want to even know what normal is.

Here is what I know: I have multiple myeloma and am in stage 2a. The goal is to get to where I no longer have any syptoms of multiple myeloma. I started taking thalidomide and dexamethazone (sp?) last Monday. The oncologist says I will continue with that for 3-4 months with the idea of getting my blood and bone marrow as cleaned up as possible. Once we have got to a plateau in terms of improvement of blood numbers, then I will go for a Bone Marrow (stem cell) transplant.

That BMT will be Autologis which means I will receive my own bone marrow that will be harvested from me, cleaned up and put back into me. That process will take 4-6 weeks of being in the hospital at Stanford. In order to put the bone marrow back into my body the doctors have to basically turn off my immunity so that I will not reject the new bone marrow. I will be in complete isolation for a couple of weeks while that happens. It is likely that will take place in July and August. So I wont be going to the death ride this year. I wonder how much of the Tour I'll be able to watch... I will be pretty weak and worn out after that happens so i will probably take another month or two of recovery before I am back and functioning well.

Also in the mean time: the spot that has been giving me the most pain lately is my left clavicle. I have a large hideous tumor on it and the bone is just plain coming apart. This makes it painful to carry anything. To sit up for any period of time and my back neck are reshaping around it so I am just plain in a lot of pain over this. Massage from Heather and sitting in the Hot tub have been a key in combating this.

Next week I will start radiation on that tumor with the hope of killing that particularly bad spot. I have high hopes that the bone will start to re-grow and start doing its job again but it is possible that it wont and I'll have to talk to the orthopedic surgeon about what to do about that.

Collateral Damage: Another thing that I do know is that the problems with my hip are not cancer casued. I have avascular necrosis of my left femoral head. That means there is a dime sized chunk of bone on the tip of my femur that is dead and not likely to repair itself once my bone marrow is funtioning properly. It is too soon to tell what exaclty will be done about this but I am thinking it will be a hip replacement surgery. Basically what Floyd Landis did. I'll get a metal femur head and they'll clean out the joint and put me back together so I can start training soon.

Outlook One of the things that we have learned is that survivor statistics for MM are mostly wrong and out of date since so much has been discovered about treatment and diagnosis in the last five years. They say that it is incurable but the reality is that plenty of people go years and years with out showing symptoms. That sounds like cured to me.
Moreover, I am a very unusual MM patient. I am not over 70 and black. I am at the very young range and I am much more healthy than most who get it. That is to my advantage. For example most older folks who are diagnosed with MM do not get BMTs because the risk benefit does not work well for them. My treatment is as aggressive as it gets and I am standing up for it really well thus far. Frankly, I can take a lot more punishment than I've got so far.

I try not to pay attention to the survivorship numbers because I just plain don't feel like they apply to me. I am too out of the box to start with. I plan on setting new records.
Honestly though, I have moved my mental life expectancy up. I have always envisioned growing old with the chickenhawk. I really thought that 80 or more would be how long I go. Now I don't think that. I do think it is realistic that I'll be around pissing everyone off for another 20 years or so. But who knows... No one knows. I can tell you when I am cancer free, I am unlikely to go back to the track of working full time til I am 65 and then retiring to enjoy my golden years. I want to take more of my life NOW to savor those golden moments NOW. I want to teach my girls to sail. I want to ride and paddle with my buddies. I want to enjoy sunsets. I want to serve my fellow man that I might pay back a little of what I have received through this miracle.

Any other questions from readers. Drop 'em in the comments. Thanks for that one Beth. It was good to write about it.
Thanks for reading

Of Team Work and Bike Racing

2008-03-04T09:01:00.000-08:00

A disclaimer. I am a puddin'. I have never toed the start line in a road bike race. I have dabbled in cyclocross, mountain bike races, and time trials, but I have never raced on the road. I am, however, a huge fan of road bike racing. I love to read about it on the net and to watch it when it comes on TV.

This blog started as a cyclist's blog. A place for me to reflect on my life as a cyclist. Obviously that is not how things developed. But my life always seems to work out such that the experiences that lead up to any given point prepare me well for the next big challenge. For example, what I have learned about bike racing has really prepared me for the challenges I face in fighting cancer. If you have an understanding of road racing skip the next two paragraphs, if you think that road racing is an individual sport and have no idea that it is truly a team sport, read on.

The first thing that you have to understand to grasp cycling as a team sport is drafting. In order to go fast on a bike one must overcome the resistance of the air that one is moving through. The faster you go the more effort it takes to speed up or maintain speed. However, if you ride right behind another rider the wind resistance is decreased by 15 -20% and if you ride behind a group of riders it is like being pulled along by some magic strings that make flats seem like downhills and uphills seem like flats. Hence the term, to pull; which means ride at the front of the group and do the difficult work of setting the pace and breaking the wind.

Next bear in mind that bike racing is about endurance. It is one thing to race for 10 or 15 minutes and then see who has the speed and power to get across the line first. That is really too easy. Most pro bike races are upwards of 100 miles. The idea is to wear the riders down, cut into their reserves, make them suffer, and then see who has been able to manage their bodies and their attitudes well enough to get across the line first. Usually before the start of a race the team decides who has the best chance of winning today and that rider becomes the "protected rider" for the race. Lance Armstrong in the Tour de France is a good example of a protected rider. He got this honor because he was most likely to be the strongest rider at the moments of the race that would decide the outcome of the 2,000 plus mile sufferfest. As a protected rider his teammates would look after his many needs during the race. They allow him to ride in the best spot in the peloton. Certain members of the team are given the role of domestique which means they bring the protected rider food, water and clothing as needed in addition to pulling as needed. Domestiques can also serve as enforcers. Bike races are not friendly rides through the park. They are often more like a street fight at 20- 30 miles per hour. Having a tough, fearless rider at your side can be a good way to keep out of unwanted trouble.

So the teammates of Lance Armstrong hardly ever become household names and the mainstream hardly ever knows that riders like Lance can never get the fame and fortune without a team that is completely dedicated, who commit complete self sacrifice to their captain's success. . Also, each team member supports the protected rider in the way that they are best suited to do so. A big heavy sprinter is no good for helping a protected rider get over a climb. But he can usually pull though flat sections of road for miles and miles. The domestiques are truly the unsung hero's of the race.

I've said it before in this blog and I will say it again; I have an awesome team. I doubt I could get through this without the help of so many people. First and foremost is the chickenhawk who is putting so much aside to help me, but also lots of other folks. I will keep writing about specific members my support group but today I wanted to write about my feelings toward the team.

It is great to me that everyone that is stepping up is able to contribute in a way that feels meaningful to them and best suits their skills. I have massage therapists, moms who make meals, guys who come over and install hot tubs, or do other "blue jobs." Many just come over to stay close to me, help me through moments of pain, bring me food and water and give encouragement by listening and talking about life. Others take me to doctors appointments. I have also received some awesome art from the kids in the community. I also have a financial committee forming who will help with fundraising and planning for bridging the gap in our financial situation.

I have often listened to, or read, the post-race winners' interviews. It is not uncommon for a winner to say that he put in the final winning effort out of a desire to deliver a win for the team after they have given so much support during the race. These are the riders that I think have true panache. I am really starting to understand that sentiment. I have been given so much support by so many people that I have an overwhelming desire to do my very best, to reach deep into my suitcase of courage and deliver nothing short of a win.

Finding the Path

2008-03-02T13:00:00.000-08:00

This is a trail that I have never been down. I have read stories and talked to others that have been here but the bottom line is that the cancer journey is a unique for each individual and family that goes down it. Last night Jen gave the chickenhawk and I something to help us on our way.

Jen and Randy were up in Whistler B.C. for a ski trip while we were in the diagnosis phase. We are really close with them but chose not to tell them about what was going on because we did not want to impact their trip. While Jen was up there she was consistently drawn to a set of earrings that are little inukshuks. She wasn't sure who she was buying them for but she bought them and brought them home. When she got home, of course we gave her the news about the cancer. She knew then that the inukshuks were for the chickenhawk and I.

The inukshuk is a significant symbol four us. Click this link to learn about the inukshuk. Here is a quote from that site.

The Inukshuk (pronounced IN-OOK-SHOOK) meaning "in the image of man", are magnificent lifelike figures of stone which were erected by the Inuit people and are unique to the Canadian Arctic. Standing along Canada's most northern shores, they endure as eternal symbols of leadership, encouraging the importance of friendship and reminding us of our dependence upon one another. In the Baffin region of Canada's Arctic, the traditional meaning of an Inukshuk was to act as a compass or guide for a safe journey. The Inukshuk, like ancient trackers, helped guide people seeking their way through the wilderness. An Inukshuk on land with two arms and legs means there is a valley. At the end of this valley, you will be able to go in two directions. Today, this serves as a reminder that we always have a choice in the direction we choose to take in our lives. Erected to make the way easier and safer for those who follow, an Inukshuk represents safety and nourishment, trust and reassurance. The Inukshuk guided people across the frozen tundra and gave them hope in barren places to handle hardships they encountered. These primitive, stone images showed the way ahead... pointing you in the direction you wanted to go. Had they been able to speak, I am certain they would have said... "Here is the road. It is safe. You can meet the demands that this path holds. You can reach your goals and attain your vision of where you want to be."

Jen took the two earrings and separated them into individual necklaces for both of us. A very thoughtful gift.

I am doing mostly OK I am very tired most of the time. It is a side effect of the thalidomide. I am experiencing a lot of pain. My left clavicle seems to be losing structural integrity. My back and shoulder are reshaping around the noodley bone and it is quite painful. My attitude is still good but I am just plain sleepy most of the time.

I know that many of you are wanting to know as much as you can about what is going on. If you have questions for me, please leave them in the comments section of this post and I will either answer them in the comments or in my next post.

Tommy came over this morning and hung out with me while the family went out. It was great to hang with him.

I also want to say thanks to Randy for coming over last week and hanging a new door on the girls room. There he is in the dark after a long day at work, helping a buddy out. I truly am a lucky guy.

Thanks for reading.

Possible Side Effects May Include...

2008-02-29T15:23:00.000-08:00

I have been taking MS contin (time release morphine) as my primary pain med for a couple of weeks now. It works great and does not make me feel nearly as bad as vicodin does. The down side, is constipation and a bit of drowsiness.

When the MS contin isn't doing the trick, I take liquid morphine. It is great at getting me through those pain spikes that come once or twice a day. Side effect: constipation.

I started Chemotherapy on Monday. I am taking thalidomide yes the same stuff that caused all those hideous birth defects from pregnant mothers taking it as an anti nausea medicine. I had to sign about 12 waiver forms to get it. The packaging has all sorts of warnings all over it so that it feels counter-intuitive to even put the pills in my mouth. The idea with chemotherapy is that it is poison that kills cells in a targeted way. Thalidomide goes after cells that are in the process of division. Since the cancer cells are dividing quickly there are more of them to kill when I take that stuff. So yes, I am ingesting poison. Side effects include: constipation and big time drowsiness also blood clotting.

The blood clotting is why I am taking coumadin which is a blood thinner. I have lost track of the side effects of that stuff but it is probably constipation. Since coumadin is a blood thinner I have to closely monitor my bloods thickness.... I do this by going every other day to the lab in Folsom and getting stuck by a needle. The lab calls later in the day to tell me how much coumadin to take for the next day or two.

So drowsiness is my biggest challenge right now. Don't get me wrong as far as side effects from chemo go, I've got it really good. I am not barfing or loosing my hair or any of those other hideous things. I am just really really drowsy. I take the thalidomide at bed time and immediately fall into a deep sleep. Sleep is so deep that I have trouble staying awake to go pee in the middle of the night. When I wake up in the morning, I go back to sleep for a nap pretty much right away. So up at seven, take my drugs and go back to sleep until 8 or 9. I am awake during the middle of the day. This week, each day, I have had some sort of appointment to do each day. I get back to the house at 2 or whatever and I sleep until 4 or 5. Get up for dinner. If I am not in pain (about half the time) then I eat dinner.

Then there is the constipation. Two days ago I pooped for the first time in three days. It was an unpleasant experience. I think it scared the chickenhawk pretty badly. I was in the bathroom long enough to read the entire Mountain Biking Action magazine from June 07. No kidding, it took about three hours to get the job done. Finishing was one of the most gratifying things I have felt in a long time. So in addition to managing medicine intake, I have to now monitor and manage output as well.

Here is your moment of zen

Full Time Job

2008-02-26T14:16:00.000-08:00

A while back I alluded to two big projects that I've been working on. One was getting the Share the Care group started. That is now in progress. If you want to be a part of my group in any way Adam and Adrienne are the ones to talk to. If you click the links on their names in the post below you can get to a page that has their email.

The other project was a big one it is mostly done now. I felt it necessary to make the transition from full time manager and mortgage broker at Bentley Mortgage to a full time cancer survivor/ patient. I expect that this whole battle is going to take the better part of '08 and there is no way that I am going to be able to do justice to my clients and my coworkers if I am fully embroiled in a cancer battle. Moreover, it is imperative that I focus 100% of my energy to survivorship.

This transition comes with great difficulty for me. I have come a long way to the point that I am career wise. Years ago when I was about 20 I made a commitment to myself that I would only do things career wise that made me feel good. I refused to work in something that did not resonate with me in a meaningful way. That commitment lead me on a varied and sometimes difficult path.

In 1987 I stared as a whitewater raft guide. It was by far one of funnest jobs that a person can do. I got the opportunity to share the rivers of California, Alaska and Arizona with countless passengers. It was a great job filled with back breaking work, long hours and pay in sunsets. And there were some great sunsets. Many of my most lasting and meaningful friendships stem from my rafting days. The community of river runners is one of the best I can imagine. I think leading successful rafting trips teaches you many many useful real world skills that serve to make a special person out of someone that puts years into guiding.

As a raft guide you have to make sure that everyone is safe in a potentially dangerous environment. You have to make hundreds of life and death decisions a day. I once had the band Heart in my boat, up in Alaska. I could have changed the shape of musical history by making a bad decision. My buddies Curtis and Tom have both had the Governator in their boat, just think how things would be different...

Good raft guides also have to have good social skills. When someone signs up for a whitewater trip, they are stepping into an unfamiliar world and usually will be in the same situation for a many day trip with a bunch of people that have never met before. A good raft guide is a good host, one that can make everyone feel welcome, included and valuable. All raft guides employ many different techniques to keep the entertainment up. There are jokes, games, knowledge of natural and human history that a good raft guide has to get some form of mastery over.

Good mechanical skills are also key. Raft companies are NOT the most profitable businesses in the history of commerce . One of the ways that they save money is on vehicles. If you want to make it from Groveland to Yreaka in the middle of the night with an overloaded under maintained 1987 Ford Van you better have some good wrenching skills.

Food prep is also a key skill. On the river we try to always impress the "people" with amazing meals prepared over a fire, a propane cook stove and a dutch oven. Many times the good guide plans and shops for the food the day, or night before the trip. Water-proofing and storing in coolers several hundred dollars worth of food in a Safeway parking lot in 100 degree heat is part of the job.

Service is another part of the job. People are not always at their best. Sometimes they need to complain, or vent. You learn to smile and apologize quickly when this happens. That is just part of it. You also need to be ready to deal with shit, literally. On a multi day trip it is required (for good reason) that you have to carry out all of the human waste. Technology has come a long way since I dealt with the groover. I could tell you some horrendous stories about emptying the contents of the groover after a long hot trip but I don't want to taint the high brow content of this blog (joking). As a matter of fact if any of you guides reading this want to tell a groover story, please click comment below.

Team work is another key skill that I learned. Not every guide on every trip is going to be good at all of these elements. Some are better with food, some can socialize all day and feel refreshed at the when the day ends. Not everyone has the aptitude to patch a raft on the side of the river in a downpour. But on any given trip there most likely going to be one guide that is good at each of these skills. The key is to always be ready to step up, do your part well and with a smile because at the end of the day the work has to be done before you go to bed.

Those are just a few things that I learned from raft guiding. What I did not learn was how to wear a suit, sit at a desk be answerable to a budget forecast, build a spread sheet, or any of the self discipline that it takes to be inside a building under fluorescent lights breathing HVAC air all day to earn my daily bread.

As the chickenhawk and I grew up it became more and more apparent that our taste for the finer things in life like a house, health insurance and cars that run on a regular basis was going to require that we get paid in a little more than sunsets. She went back to school and got her teaching credential. I tried many different ways to make some more bucks in the outdoor industry, I managed a rafting company, I ran a kayak school and taught whitewater kayaking, I worked as an independent sales rep for a bunch of "paddle sport" manufacturers. All of these jobs met the criteria of being meaningful but I kept feeling that because I was working in the industry, I was still expected to get paid in sunsets. So, I ventured into the corporate world and ended up for the last six and a half years with Bentley Mortgage.

The part of being a mortgage broker that has come easily for me are all of the things that I learned raft guiding. I am ferocious in protecting my clients well being. I don't want to see anyone get hurt as a result of working with me and I take that duty seriously. I want everyone that I work with to feel welcome and comfortable. I want to find the best possible deal to fit my clients needs. I treat my the other people that I work with, my co-workers, lenders, escrow officers and appraisers as respected team member that are all working to get the job done for the client. I find it very rewarding to be able to help my friends and clients through some of the biggest decisions they will make.

In doing this job for so long I have built up a client list of folks that have for the most part become friends and who trust me to take care of their mortgage needs. For me this is a huge asset. I do not advertise, I do not cold call, instead I rely 100% on referrals from my past clients, friends and family. This is how I have been the sole provider for my family for the last 5 years as the chickenhawk has stayed home and raised our girls.

To walk away from the role of provider has been one of the hardest things I have had to face in becoming a cancer survivor. I worked really hard to get to where I am and I feel like it is being ripped away from me. This gives me a feeling of helplessness, sadness and anger that are hard to describe.

I keep thinking back to the movie Fight Club where the Ed Norton character says, "I am not my job, I am not my paycheck, I am not my furniture, I am not my car..." It is true I am my spirit. I am naked against the world, all of are when you get right down to it all we really are is the sum total of our beliefs, feelings and actions. I have given up my job, I have given up my bike, I have stopped driving I often can't prepare my own food, sometimes I am in too much pain to get a drink of water, I am only doing a halfway decent job as a parent and a husband right now. I am keeping a list of other things I might have to give up, like pooping in a dignified way. These are the insults of cancer. I will take them all on with the best of my ability.

Team Leaders

2008-02-25T18:59:00.000-08:00

Meet Adam and Adrienne, standing on my left and right in this pic. I've know Adrienne so long that I am not sure what year it was that we met. I think it was about 1991 but it might have been 1993. We met when she first started with Whitewater Voyages. I was a grumpy senior river guide and Aidee was a fresh newbie with a ton of enthusiasm and joy for life. The Chickenhawk and I were both working on the South Fork of the American that season. We ended up fast friends with Aidee. In the winters Adrienne was pursuing an ivy league education while Sarah and I were trying to make ends meet and figure out how to be a young married couple. Over the years we kept coming back to Voyages for the rafting season and my friendship with Aidee just grew and grew. We also both started working in the outdoor industry around the same time. I was a sales rep and Adrienne was a fledgling recruiter with a big firm in her home town, San Francisco. So we got to hang out a couple times a year at the Outdoor Retailer Show.

In 1997 my buddy George and the Chickenhawk threw a surprise 30th birthday party for me. It was a great party and the thing I remember most was that Aidee brought the best birthday present I've every received. I am sure she didn't think of it that way, she was just bringing her boyfriend Adam. But I took to Adam right away, and we've been friends ever since. Around then we bought our home in Coloma and Adam and Aidee escaped San Francisco and moved to Coloma.

Adam and I have been close friends almost since we met. He is honest and honorable. He has the bravery of someone that has faced his worst demons and come to terms with them. In fact, one of his missions in life is to be of service to those in need. He has one tattoo that says attitude of gratitude. Adam is, almost always, in gratitude.

I am blessed with many many strong male friends, the kind of guys that would do anything for you, Jim, Jeff, Curtis, KD, Tommy, David, Fast Dan, Tom, Bill, Matt x3, Marek brother Yllib and I could keep going. When it became obvious a couple of weeks ago that cancer was what I was facing, I had to call Adam. I knew that telling him was going to be incredibly painful but it had to be done. When we talked, I asked Adam to be the One. The One that stays with me by my side all the way. To whatever the end would be. His answer, of course, was yes.

The book Share the Care, describes how to form a care team. One of the key positions was team leader. As the chickenhawk and I read the chapter we both, independently had the experience of substituting 'Adam' for the words 'team leader.' It was that obvious. Adam is a very charismatic guy. He makes his living by understanding the needs of his clients and finding the right people to do the job. He also has to absorb the mission of his clients on a cellular level and then turn around and articulate that mission to potential candidates. At this, he is a master. That is essentially what he is doing now for me. The mission is to have me be cancer free in the easiest way possible. Adam and Adrienne are responsible for that meeting that brought more than 100 people out to rally for my cause.

The other position that needed to be filled was coordinator. The person that would handle the logistics of all those volunteers coming together to support that mission. We knew that Adam's wife Adrienne would be perfect for the job but we felt it would be too much to ask. To have my disease invade their lives in such a huge way was too much to ask.

Adam of course suggested Adrienne and when he asked her if she could think of anyone to do it, she suggested herself. One of the principles of Share the Care is that no one should work so hard that they become burned out. Also people should be able to take time off to rest, recreate and recover. Adrienne is our coordinator. She is working on getting assistants, because it is a big job. She is perfect for the job.

I cant think of two better people to better see to the well being of my family in a time of need. They have already done tons of work and we are just at the beginning. Their service to me is another example of the many gifts that have come to me. It is another reason that rather than feeling anger, or sadness or sorrow through this adventure, I feel gratitude and a strong desire to do my best.

Treatment

2008-02-24T20:00:00.000-08:00

I spent the weekend taking anti coagulants in preparation for the chemotherapy that starts tomorrow. I will be taking Thalidomide and Decacdron. The Thalidomide causes blood clots so that is why the anti coagulants. The side effects of the thalidomide don't sound too bad. Mostly drowsiness. So I'll take it at bed time.
One of the anticoagulants is lovenox. I have to take that as an injection. So far I have not mustered the gumption to give myself a shot so the chickenhawk has been doing it for me. She is one of the most squeamish people I know but she is doing great with sticking me. I think it is all the years of practice on sorelegs voodoo dolls.
Nana and Papa took the kids for the weekend and we got to spend some time just the two of us. That is rare, but we stayed home and enjoyed the peace and quiet.

That is the short term update. I am working on some larger posts soon to come.
Thanks for reading.

Diagnosis

2008-02-22T10:28:00.000-08:00

The Doc called yesterday with the diagnosis. I've got multiple myeloma. I've been avoiding learning too much about it even though that is what has been suspected. I didn't want to waste energy learning about something the that I 'might' have. Now I'll be spending some time on that website, multiplemyeloma.org.
First today we are off to Roseville to pick up my chemo drugs. Luckily I get to take them orally. Sounds like the side effects aren't too gnarly; just drowsiness which is the primary side effect on everything else I am taking so... whatever. I'll be on the chemo for a few months. Perhaps then a bone marrow transplant but that is yet to be determined. It was hard to get the news all over again. I thought I had my mind wrapped around having cancer but it feels a little like I am starting over again.
The Chickenhawk and I were awake for a couple hours last night. We did some good talking. She is feeling a lot of anger, and who blames her. We had a pretty sweet life up until now. I've got a lot of things that I have to give up and so does she. For all of you sending good thoughts, prayers, healing vibes and cosmic psycho rays please send some to her. This is going to be a major test for her. For my part, I am going to give her as much love and support as I can.

So here we go into the next phase. I am ready.

Stuff Items and Things

2008-02-21T13:56:00.000-08:00

In our house there are jobs that I do, and jobs that the Chickenhawk does. We call them pink jobs and blue jobs. Before you think too hard about who does what, you have to remember that she is a chickenhawk and I am a puddin'. So if it involves tools, it is not necessarily a blue job. I take care of the bikes and the cars. I do some of the home maintenance, but the chickenhawk does most of it. The kid's bedroom door was coming apart at the seams, so Randy came over last night and hung the replacement door that we ordered a few weeks back. That was a pink job: thanks Randy for helping my wife. You are a real man!

Father in law Charlie is right now working on (what I think will eventually be a blue job) managing the chemicals on the newly installed hot tub. Thanks to Eric, Curtis, and electrician Manny for getting that going. Hot water soaks are key for managing my pain but our bathtub is too small; I can either get my legs in it or my body, but not both, and it is very very uncomfortable at this point. So I am really looking forward to the hot tub. Another example of a blue job in our family is cleaning up from dinner. The chickenhawk is a great cook -and I can burn water- so cooking is pink; cleaning dishes blue. Thanks to Nana for doing the blue dish job as of late.

Point is, there are no jobs: blue or pink, that I can do right now. My job is to be a cancer patient. Also, it doesn't pose too much of a problem to sit at the pooter and blog. I can also hold down the couch and watch the Tour of CA but that's about it. I can see a real bright side to that, like, I don't have to do sh#+!$?!?&?!

It really boggles my mind that there are dudes out there who aspire to that. What a ridiculous waste of potential. I'd easily trade with somebody. I could take some fat bastard's body, give him my pain, and then work his fat ass into shape for him, just to get my butt out there. Any of you wanna trade? Bargaining... that's one of the stages of grief isn't it?

Well, that is what I've got for today, other than to say hey to Gretchen, she gave me an awesome massage today. Very different technique, I forget now what it is called, but it is very mellow laying on of the hands. It actually got me out of my body and having full-on muscle memory experiences. I felt myself skateboarding, surfing, sailing, climbing and kayaking. I also felt myself descending a nice smooth single track mountain bike trail. My cancer body was laying on the table twitching with the memories and I would jump back into reality with the big twitches. So thanks Jane for gifting me the massage, and thanks Gretchen for taking such good care of me. It felt good to remember how I used to be.

Gratitude
Nana and Papa
Granny
The girls who could do anything they wanted for 1/2 hour today
Adam
Adrienne
Comments
My amazingly awesome community
morphine
green bud

The Big Meeting

2008-02-19T10:39:00.000-08:00

Last night there was a big meeting at the Sierra Nevada House. My Care Group was officially formed. It has been named LoCo Care. The name itself deserves some explanation. My riding group, Velo LoCo is so named Velo (which is a cycling term for well, cycling) Lo for Lotus and Co for Coloma. It is a reasonable play on words because we are pretty crazy.

My care group is using a model created by an organization called Share the Care . It was pretty amazing. Share the Care recommends that a care group consist of 12-25 people if you can swing that many. In this blog I have often talked about how amazing my community is, but this meeting spoke volumes about that; there were about 100 people at that meeting! these were all folks that had stepped up and said that they want to help in some way. I am truly honored and amazed at the outpouring of support.

Adam (my group leader who I will intoduce formally soon) asked me to speak to everyone at the meeting. His wife Adrienne, (whom i will also speak of soon) aptly managed all the meeting details. To the assembled group I read these words:

Thanks for choosing to be here. Before I start I want you to look around the room at all the faces… As you do, make a mental list of all the adventures you have shared with so many of these people, your neighbors, your community. Think of all the river trips, bike rides, climbs, trips to the ski hill; peak experiences, you have shared with so many of these folks. We have shared some really good times and some
really good adventures.
A couple of months ago, I took my girls Child One and Child Two out for their first Mountain bike ride out at Cronin Ranch. They are both new to bike riding and the trail we were going to ride would to be a big challenge for them. So to prepare them I started talking about the differences between an adventure and an epic. I explained that all adventures have some bad things that happen and some good things. And that an epic is when the bad outweighs the good. I explained that there is no way to know ahead of time whether you are about to start an epic or an adventure. All you can do is be ready for as much as you can, and deal with the bad as it comes and try to make good out of the trip.
Well, about half way through the ride Child One crashed her bike hard. She cut her face and skinned her knees. We were more than half way through the loop trail. We had her bike, and Child Two's trail-a-bike attached to my bike. My hip and collar bone were already bad at that point so carrying her out represented a difficult option. She wanted to go back, but I explained to her that going forward would get us done sooner. Child One climbed back on her bike and, sobbing, rode slowly away down the single track. Pretty quickly we came upon a horse that she got to pet. Soon after that we saw an adult friend of hers that I had never met. And before we knew it we were all having a good time. The end of the loop was a big up hill for her and she rode it with strength and determination. At the end we clearly had had an adventure.

My family and I are facing a big adventure. We are all facing a big adventure. It is called life. I did not choose this illness that faces me. I clearly don’t want this illness but the fact is I’ve got it and I am faced with the choice of having an epic, or an
adventure. I choose to have an adventure. I think of a quote from John Wesley Powell for those of you who don’t know, He is the leader of the first expedition to run the Colorado River through the Grand Canyon in 1875.

"We have an unknown distance yet to run; an unknown river yet to explore. What falls there are, we know not; what rocks beset the channel, we know not. Ah, well! We may conjecture many things... With some eagerness, and some anxiety, and some misgiving, we enter the canyon below, and are carried along by the swift water.”

I stand before you to humbly invite you, my friends, family and community to
the extent that you are able and desirous to come with me on this adventure
as my team. I can promise you that it will be difficult. There will be suffering. I
can also promise you that like any other good adventure, you will grow. The pay will be nothing. But at the end, you will feel the satisfaction of having accomplished something big and worth being proud of. And I can promise you will have my undying gratitude.
Thanks, me

I did not have the strength to stay for the whole meeting. Seth took me home and we watched the Tour of California on VS. I am really glad to be able to watch it on TV even though the coverage is horrendous. Two years ago KD and I were at that same finish line in Santa Rosa to watch JJ Haedo take the sprint. At the time we had never heard of him until then. Yesterday he pulled a repeat. I have had several offers to go down and watch today's finish. Unfortunately, I am just not up to it. Just another item in a long list of stuff you have to give up in order to be a cancer patient.

So, dear readers, I have a humble request. If you are out there watching the Tour of CA please send me pictures. My e mail addy is spencedoggie at gmail dot com. Please include yourself if you'd like. I'll post the best pics here on the blog. Bonus points will be awarded for a picture of you mooning Mario Cippolini.

Gratitude:

There are truly too many names to list here and my brain will not remember all of them.

Back Home

2008-02-17T20:10:00.000-08:00

It is 8:11 on Sunday night. I was in the hospital since thursday valentines day. I started feeling bad on Wednsday night and ran a high fever all night. On Thursday we went to an allready scheduled oncologist appointment. He took one look at my sorry a$$ and checked me in. I had pneumonia. I spent the last few days on heavy antibiotics and morphine. I am really really glad to be home. That said I had a pretty good time in the hospital. The food was OK, the staff was awesome and my care was excellent. The Chickenhawk spent the fisrt night with me and Granny (my mom) the second. David spent the last night with me. It was like a campout with pain, piss and poop. I truly grew closer with each of my babysitters and had an all round good time except for the having cancer and pneumonia and pain part.
I'll write more soon. Thanks for haning in there. I am back and I am strong.
PS Blogger still isn't letting me spell check and I have got bigger fish to fry than figure out why it aint working so thanks for bearing with me.

Meet Tom and Heather

2008-02-17T18:42:00.000-08:00

Here is a post that I was working on before I checked into the Kaiser Hilton.

I mentioned Heather the other day. She has volunteered to give me massages through the adventure yet to come. A gift that I am still completly honored by. Heather is one of the sweetest, kindest women you'll ever meet. She is also the catylyst behind starting my community care group. She lives here in the valley with her hubby Tom and their two great kids. Tom, yes this guy below, he is a nut.

As a cyclist he is, shall we say, reluctant to be swayed by the rigid construscts of cycling fashion. To put it frankly he is a cutter. I know he owns a cycling jersey becasue I gave him one. He even wears it when he rides, sometimes. His idea of during-ride energy food is a slice of peperoni and anchovie pizza wrapped in tin foil and shoved into the jersey pocket. He ususally packs a couple of extras for his buddies.

As a kayaker his is just a bansai mo-fo. That is why he looks like so sweet in this picture. Sounds like he got this shiner by going upside down half-way through a big old drop on Weber Creek on Super Bowl Sunday. He was at Chris and Traci's for the party after. Coach Tori came to his house and pathced his melon up. Because that is what we do around here. Well done Tom. Well done.

I hope for this to be the first in a series of introductions to my community care group.

Thanks for reading Look below for updates.

TCB

2008-02-12T07:28:00.000-08:00

I've hear Elvis and the Colonel used to wear belt buckles that said "TCB" for taking care of business. I gots me bidness today. I am transitioning into being a full time cancer patient. Not a job I want, but I am gonna TCB.

I've got a CT Scan today at 4:20. What would you do if you had a CT scan at 4:20?

New Day

2008-02-10T18:48:00.000-08:00

Yesterday (saturday) was all about experimenting with vicodin. I didn't want to use it going in but thought it best to give it a try. So I gave it 24 hours. I quit (for now) last night at about 3:30 in the AM. I am sticking with tylenol and some groovy herbal stuff that a friend gave me for now. It feels good to be present in my body again. Vicodin took me out of my body and reality for the day.

Today (sunday) I sat in the sun in our gravel driveway. It was one of those classic sunny winter days where if you are in the shade you need a sweater and in the sun you need to have your shirt off. I lsitened to Songs from an Old Blue Chair and read Share the Care . This is book is like someone invented the wheel and all we have to do is roll it. Tonight we are going to work on pur plan for forming my care group.

I am feeling really good right now mostly because Heather F came over and gave me a massage. She has volunteered to give me massages as I need them. This is a huge gift, I dont think I'll really have the opportunity to fully repay her. I honestly cant imagine what I might be able to do to repay her so I am accepting the gift. With Emmense Gratitude.

I've got two major projects going that are going to take a bit of energy for the next few days. I'll write about them when I am ready. I truly appreciate all of the well wishing and offers of help from everyone. We are working on a plan that will hopefully include the community as much as possible in my healing.

The Chickenhawk

2008-02-09T17:52:00.000-08:00

Many people have been asking me why I call my wife the Chickenhawk. She got the nickname about 8 years ago back when we were doing a ton of mountain biking with Matt from bicycle planet. He gave her the name because she is tiny and completly fearless, just like the character from the Foghorn Leghorn cartoons. She is willing to take on any challenge and usually attacks head on.
So, that is why I call her Chickenhawk. She seems to like it.

Pain is ______ leaving your body

2008-02-09T10:31:00.000-08:00

Fill in the blank....

This is something that I am inclined to be private about. I am choosing to share because I want to write about the experience of pain. One of my goals through all of this is to be open and share what it is like in hopes that in some way it will bring good to the readers. The other reason I write about this is that it helps me process what is going on...

I've heard the saying that pain is weakness leaving your body. I don't mean to bitch but last night as I was struggling to do a few floor yoga poses that saying came to mind. And just like that it morphed. Pain is fitness leaving my body is what came up instead.

In 2007 I turned 40. I set my fitness and riding goals high, I trained hard, and got stronger and faster than I had ever been. I was doing regular yoga and core work, I dropped a waist size and got my weight to its lowest in my adult life. Best of all was my legs. Any cyclist knows what I am talking about. When you are putting hundreds of miles on your bike every month your legs become something to be proud of. That is why we cyclists shave our legs; vanity. Don't let anyone tell you otherwise, we are proud of our legs. They look a lot better when they are shaved.

April is when I first started hurting. My shoulder and collar bone hurt when I lifted my bike up to put it on the roof of my car. They also hurt when I spent more than a couple of hours on the bike. Like a good athelete with goals I did my stretching and my exercises and iced and it got a little better. But as the year progressed the aches and pains grew. In August I called off the ride that I had wanted to do in Septmeber. KD, Ray, Uncle Don and I had talked about riding highway 50 across Nevada. It would have been a great adventure but my body was not feeling up to it.

Over the last couple of months I have spent progressively less time on my bike. The last real ride I did was December 21st. Since then the amount of pain I have been feeling has been too much to even think about riding. Over the last few days I have moved from over the counter and out of the garden pain killers on to the stronger stuff. I am trying to keep up with the pain. What I've learned from the various tests is that I am walking around with a bunch of broken bones; collar bone, ribs, the head of my left femur, and my right foot.

At this point my legs aren't so impressive anymore. No point in shaving them. I suppose that is a silver lining as far as the ChickenHawk is concerned (she Hates stubble!) I often feel anger with my body, like it has let me down. It is a hard emotion. My body has been a joy to be in for 40 years and now it is becoming more of a liability as the days pass. The pain is there as a constant reminder of what I am losing. Pain is fitness leaving my body. It is the same pain that you feel when you are soloing off the front trying to drop a pack. It is the same pain you feel when are pushing your hardest up a big climb. We all know, on some level, that the ability to deal with the pain is just mind over matter. Just put your head down and keep pushing.

I am saving that feeling of anger for the fight that I have coming.

Hooray, I Have Cancer!

2008-02-08T17:18:00.000-08:00

The Chickenhawk and I actually feel like celebrating right now. You might think we are insane and perhaps we are but it feels like weeks of waiting and wondering and WORRYING are over. As I have said in these posts, I am sitting in, conserving my energy and waiting for an opportunity to attack. Well my opponent has shown himself and my team and I are marking him. Our job now is to wear him down and then rip his legs off. Big ring all the way!!

The details: Doctor KT just called. She gave us the cliff notes version of what I've got. KT is my dear friend and first mate who works as a GP at Kaiser. She works two doors down from my oncologist and has been my champion through all of this. She has assisted in coordination of my diagnosis and moreover has been a steadfast friend and interpretor of all the medical jargon. I am really really lucky to have her!

So I have cancer. The doc says maybe some sort of plasmocytoma. All through this the doctors have been talking about something called multiple myeloma; however, many of my test results have pointed away from that, while others have pointed at it. Please note: we are stilll not sure what exactly is up but we do know I have cancer in my blood and that it may be a bone marrow tumor in just one spot rather than all over my body. There are other possibilities as well and we will need to do more testing to find out.

As I type we are waiting for the oncologist to call and give us the scoop. KT's call was just a primer. Sounds like I'll be doing some chemo, radiation, maybe a bone marrow/stem cell transplant. Too soon to tell. My sense of releif is immense right now, now that we know generally what it is.

Last night I had a nighmare that they never could diagnose it and I just slowly got more painful and crappy until I faded away. All the doctors could do was study me and try to learn. That has been my worst fear for sometime. At this point I feel very relieved that I have something to fight!

Gratitude
The calls of support and good deeds pointed at us have been overwhelming.
Curtis Hincapie (a nickname) David and Eric M, came over yesterday and installed the hot tub. No one asked them to do it. They just came and did it. Chickenhawk tried to pay them but they were not taking any money. I'm going to build up Curtis's cross bike for him in return. I need to come up with a 10 speed rear deraileur for it. I think all the other stuff is lying around in the spare parts bucket. Eric, if you are reading, drop your bike off and I'll tune it for you.
Answers
Aunt Judy and Uncle Peter
Adam and his counsel
Mom
Dad
Chuck and Nancy
Cassidy for stepping up and helping out
Everyone at the office
David
Barbara
Noey
Marek
Tori
Randy
Jenn
Tanner
Cris and Mike
I can keep going but this is starting to sound like an acceptance speech.

Dont worry about me I can do this.

The Two Classic Blunders

2008-02-07T20:01:00.000-08:00

Seems like we're always qutoing a movie around Puddin Headquarters. Lately it has been this one:

If you make a mistake or are about to make a mistake around here you have to admit to making one of the two classic blunders and then make up, on the spot, what the other one is. Makes the whole business of blowing it a little more fun really. Your favorite Pricess Bride quote would be?

Thats all I've got for now,
I Montoya