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.

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.

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.

Jerseys

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

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

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

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

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

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

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

OK that is enough for now. thanks for reading.


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

Goal and Objectives

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



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



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



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



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



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

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



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



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



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

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

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

Great Info

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

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

Steppin Out

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

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


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


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


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

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

Getting Ready

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

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

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

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

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

Pictures

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

Chickenhawk reading up

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

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

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

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

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

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

A Step Forward

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.