A Step Forward

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



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



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



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

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



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



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



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

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

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

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

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

Today Was a Good Day

Just wakin up in the mornin' gotta thank god.

I dont know but today seemed kinda odd.

No barkin' from the dog, no smog

and momma cookin' breakfast with no hog.



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



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



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



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

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

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

What I'm Not Doing

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

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

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

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

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

I sure am looking forward to being done with this.

Garden and updates

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

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

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

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

Other News:

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

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

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

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

Breaking it Down

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

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

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

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

I want to share something else...

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

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

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

IV Chemo Round I

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

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

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

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

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

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

Friends and Family

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

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

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

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

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

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

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

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