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

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

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

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

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

Bad:

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

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

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

Coloma Goes Boi-yoi-yoing

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

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

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

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

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

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

There we are making smores on the last night.

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

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

Love you. thanks for reading.

Spence

La Vida Dolce

Do you know the feeling?

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

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

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

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

Life Goes On

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

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

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


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

One Year

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

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

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

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

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

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

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

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

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

Good Intelligence is Key

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

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

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

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

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

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

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

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

When North is South and South is North

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

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

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

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

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

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