Wednesday, December 24, 2008

Bail out the Big 3 or National Health Care

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
Click on this link or paste it to your broweser for more info:

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.

Wednesday, December 17, 2008

Good News, The Best Possible News

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

Monday, December 8, 2008

Coming Back

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

Friday, December 5, 2008

One Step Back

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.

Saturday, November 29, 2008

A Blog About Cycling?

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.

Thursday, November 27, 2008

Stories of Gratitude: Charlie and Nancy

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!

Saturday, November 22, 2008

Lance, Dope, Cancer and Understanding

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.

Thursday, November 20, 2008

Stuff, Items and Things

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.

Saturday, November 15, 2008

Down Day

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.

Tuesday, November 11, 2008

Veterans Day

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.

Sunday, November 9, 2008

An Economic Rescue Package to Save the Human Race

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

Saturday, November 8, 2008

A New Post ('bout time)

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
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.
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.

Saturday, November 1, 2008

Settling In

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.

Thursday, October 30, 2008


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.

Saturday, October 25, 2008

Home Soon!

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.

Thursday, October 23, 2008

Update from Stanford

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.

Monday, October 20, 2008

Busy Busy

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.

Wednesday, October 8, 2008

Stories of Gratitude

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.

Monday, October 6, 2008

of caretakers, timing, gratitude, and life.

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.

Tuesday, September 30, 2008

Shit, and piss, and phelgm

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.

Tuesday, September 9, 2008

Back in the big house

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.

Saturday, August 30, 2008

Probably My Last Post Before the Transplant

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.

Monday, August 18, 2008

Couch Time

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

Saturday, August 9, 2008

What I've got

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.

Saturday, August 2, 2008

Rumors of my demise are greatly exaggerated

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

Wednesday, July 16, 2008

catching up

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.

Sunday, July 6, 2008

I am still in the fight

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

Wednesday, June 25, 2008

FIrst Night in Stanford

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.

Monday, June 16, 2008

It is Starting

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.

Tuesday, June 10, 2008

BMT Details

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.

Thursday, June 5, 2008

Game On

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.

Tuesday, June 3, 2008

New News

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.

Thursday, May 29, 2008

A big mistake and step backward

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.

Saturday, May 24, 2008

Glacial Progress

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.

Wednesday, May 21, 2008

News and Jerseys

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.

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.

Tuesday, May 13, 2008

Goal and Objectives

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.